Sco got a bug

2010-04-18T18:18:00.001-04:00

John passed away today at 2:25pm. Thanks for all your thoughts and prayers. I will try to update this blog at some point to give details on his memorial service.

Thanks
Jody

kablam!

2010-03-20T15:46:00.002-04:00

So we'll blow the dust off the blog in style and shotgun the latest (and not so late) out to the masses. You guys deserve better than this...

I do apologize for the long delay. The holidays were only an excuse not to be writing. I just wasn't feeling very shary. I'm still not, but the pressure this week alone has my heartrate way too high though at least my blood pressure is okay.

My last batch of chemo was in early December and I was looking forward to the time off. I'd made some special gifts for kids I know after finding custom thumbdrives that looked like Clone Troopers. I filled them up with the old NPR Star Wars radio dramas and so far all the boys have really liked them. :)

Jody and I had my in-laws come for Christmas and I worked my magic to get premo seats and a special dinner with car service to see Young Frankenstein on stage at the Kennedy Center. It was a wonderful night not soon to be forgotten.

The new year arrived though and I was not feeling so great again. At the time I chalked it up to having caught something from my father in law whom was not perfectly well during his visit. Various remedies kept things at bay and I was able to make a scheduled CT scan and followup to learn that, on Xeloda alone last year, the disease had managed to progress... a little... but in my mind, it was pretty devastating. Dr. Lee proposed I go back on Xeloda with Avastin again but to taper it off so that I could tolerate it better. That would have started in February but I miised seeing Dr. Lee because of the weather.

The recordbreaking snowstorm came and had to be dealt with. I mustered what energy I could, as I could, and we eventually got ourselves dug out. We had help and we were thankful for it, but my cough was getting worse though nothing was ever coming up. I feared infection or pneumonia and went to my general doctor.

Two rounds of antibiotics made no improvement and the cough worsened to the point that it was triggering my stomach to want to be emptied. That has sucked and has only added to my fatigue, more weight loss, and feeling depressed.

It was this time that I decided to 'get off the pot' and find another oncologist. I have valued Dr. Lee's opinions and encouragement and I will dearly miss her staff in Columbia whom have been angels in some of my darkest days and worst experiences. The truth of the matter is, she is not a researcher and she is not plugged in to the clinical trials community. I want to be closer to that world and to be working with a doctor who knows I have already raised my hand to volunteer.

Other than a very scary evening in the ER a few weeks ago where nothing was wrong with me that covers the past three months. Imagine feeling kicked in your ribs and being unable to breathe without excrutiating pain. Now imagine ER doctors and nurses missing your veins with IVs, not seeing anything on x-rays or CT scans, and sending you home to consult with your oncologist because it's probably your cancer in your bones. Yeah. Well, I got over that somehow. Science and their bedside manner have a LOT to learn from faith and genuinely caring believers.

That pretty much catches us up to this past week...

Monday was the day I met with Dr. Naimish Pandya at the Greenbaum Center of University of Maryland. He's a researcher and a practicing onc. We went over my case history and he gave me his opinion. Going back on Xeloda and Avastin is not the best course of action. We know Xeloda needs help and we know Avastin makes me ill. With no improvement after two rounds of antibiotics, he feels my persistent cough is very likely mets bothering something higher in my respiratory system. He feels it's time to go to tier 2 which is an IV cocktail called FOLFIRI.

At the mention of this, I began to panic. I chased it away for the moment and continued the conversation. I am simply afraid of being alone, of quiet, when I've had to wear the infusion pump. It terrifies me... the haunting slow squeal e v e r y fourty three seconds It is tortuous.

But I knew he was making sense. Before I can think about trials, I need to have my disease back under control so that this cough does not grow any worse.

IV chemo means drips in my arm for long periods of time or finally getting my clogged port replaced. That happened yesterday, very suddenly, and though I am sore today I am glad it happened with more time to heal up before my first drip. That will probably be happening April 9th which will mercifully not trample my 7th wedding anniversary with Jody. She deserves so much better than we've been dished. :(

Compounding this week though was my boss... my old boss. She, um, does not communicate very effectively. Week before last she dropped a bomb on me that some govvie had eavesdropped on my conversation with a beancounter. Said beancounter had actually lied to an auditor but it was on my head to cover up for her. Nosey govvie got upset that I told her it was not my top priority to help her and the audit guy change some spreadsheet block from red to green. We passed our audit, and did a crapload of other stuff that got crammed by the snowstorm, yet my head was still desired upon a platter.

Tuesday old boss emails my teammate and I, on the same To: line, that she needs to speak with us, separately. Given the lack of communication, a direct snub of meeting my new boss a week ago (WTF?), and the plainly bass-ackwards way some of my govvie customers behave, I was sure I was getting a pink slip. I prepared for the worst and my well-being suffered for it. Wednesday morning I got a thanks for all the hard work and for being such a great guy, my (her) last day is Friday, and hey check your calendar because I signed you up for a cool training opportunity (as long as chemo doesn't keep me from it). Color me stunned.

Still in shock from that came an oh yeah, that's scheduled for tomorrow when I asked about my port being checked or replaced. For those of you who saw my status on facebook, last week was indeed, difficult.

Yesterday, the port procedure was strange. I thought I'd be knocked out, but they gave me something to make (that never made) me drowsy and I went through every step with the surgeon and his resident. Weird. Interesting and not scary, but weird. Today I'm sore but not nearly as traumatized and swollen as my first one. It's in roughly the same spot but into my jugular instead of the subclavia. That ought to have much better resistance to getting clogged up as early and as fully as the old port/location did.

Wish me luck... especially with the pump. I hope it is nothing like the ones I know.

it's still raining... a reminder

2009-11-22T05:59:00.002-05:00

I had a really nice day yesterday. I got to spend it with my Mom and my Dad just helping with a few chores and talking for most of the day. It wasn't planned out, it just happened that way.

Dad needed a lift back into the city for a quick test and Mom needed to stay home so I gladly volunteered. I hadn't seen Dad in a week thanks to some bronchitis I picked up while waiting at the the hospital when Dad and Joanie had their surgeries.

Oh. Yeah, about that...

I neglected to share that here for you non-facebook friends of mine and I feel awful. Not to worry, both Dad and Joanie are home now with one of Joanie's kidneys now doing wonders to help our Dad. :)

It's a little cliche, but there has been a meme floating around the net over the past few weeks, I think it may have started with Oprah Winfrey, but it has been a challenge to publicly post things you are thankful for. every day, try to post something new that you appreciate, leading up to Thanksgiving.

I resisted largely because I've never been big on fads... even though I'm a sucker for cutesy stuff like the LEGO games. But the real challenge is there to truly stop and think about what I'm grateful for.

Funny enough, the topic of memes came up in conversation with Mom and I used that one to help describe the term. Later, as Dad really needed to be resting, he stopped me before I left and said he wanted me to see a music video...

I'd never heard this song before (and I'm glad I could link a video with subtitles). If it has rained, it has certainly stormed in my life but, as I fought back and got choked up, it actually made this challenge of naming what I am thankful for pretty easy. So, indulge me.

I am thankful for God even though I might have hurt and will probably hurt again. I am thankful for my Mom and Dad who introduced me to Him. I am thankful for Jody who, as ill-equipped and fragile as I am, has weathered with me through some absolutely black and crushing times. I am thankful for my sister who, despite the miraculous match that she was for Dad's kidney, did not hesitate to volunteer for the surgery with my nephew at home not even really crawling yet. I am thankful for Josh, my brother in law, whose feet haven't folded underneath the weight of being a new dad. I am thankful for my cousin William for leaning on all of us because we hold each other up. I am thankful for the rain and the storms in my life because them remind me that I am not alone.

a dare...

2009-10-18T13:42:00.002-04:00

I'm going to dare you to watch a movie.

It's a documentary, "Crazy Sexy Cancer," and it's actually on Discovery Health Channel today. And while I'm trying pretty hard to relate my experience here, Kris Carr manages to emote the Reality so much better with her visuals.

She's not alone nor does she have both oars in the water all the time (imho) but she's feeling on film the same feelings I have... and do. If you don't cry, um, well that won't happen. If you don't laugh, well, that won't happen either. Trust me, it will be a challenge.

So, buy a copy, rent it, borrow it from the library, or Netflix it... if you dare.

lemme blog atcha

2009-10-08T16:26:00.003-04:00

Hot on the heels of the horrible experience that was the bronchoscopy, remember to make sure they knock you out, I got my wind back and had a pretty good week. It was lonely with Jody away again, but it ended on a high...

I got to go back to the track and drive.

I actually signed up about a month ago after seeing the chemo did not completely stop me in my tracks. I did gamble a little but figured it would be far easier to back out or even just carry a credit for a future date instead of try to get in at the last minute. Turns out, I got my moneys' worth.

Ask me how it went and I'll bore you with details of how I got the tires right into their sweet spot with just one session and couldn't get turn 14 right twice in a row except for the very last session and how neither of my ideas for turn 8 really panned out... ;)

Meanwhile, the results of the bronch came back... and they were negative. ???

This is a little like being told to circle before landing. I'm still sick, as the CEA marker rising tells us, but a doctor looking for disease to biopsy inside my lungs did not find any. True, he did see spots, but they were too small to sample. Thus,I'm stuck with disease too big to Cyberknife, too small to surgically remove, too small to biopsy, yet too much of a nuisance in my blood to get me off chemo. What a pain.

As well the K-RAS test came back negative, but that wasn't such a big deal. All that means is I can take Irinotecan with Erbitux in the future if the Xeloda I am on stops doing what it's doing. But for now, the Xeloda is doing what we want it to do and it's doing it without making me sick. Truth be told, my track day last week was the day after I finished my third round (of eight).

Sooooo... I will still stay on the lookout for trials or experimental procedures that may need sick people to volunteer.

This is what a cancer patient can do... eat up S4's :D

Well I won't do that again...

2009-09-26T06:30:00.003-04:00

I blurbed about this on facebook but let me expand a little for my distant readers or those whom might happen to stumble here in search of advice on a bronchoscopy.

First word of advice, negotiate some sort of hand signal or gesture to tell the doctors you're not doing well. Clenching your fist, moaning, raising your hands and waving did not work for me.

I'd been told I would get some anesthetic to numb my sinuses and then a little more to numb my throat. It was supposed to taste bitter. It was supposed to be -in-addition-to- an iv twilight drug that would make me compliant with their demands and forgetful of the entire procedure... they were wrong.

The doctor was running late for the rain and the traffic that I and my wife had managed to get through just fine and arrive on time. So I laid there wired up with sensors and ice cold oxygen in my nose under a hospital gown slowly freezing. Multiple "blankets" were piled on when I mentioned the iv drip was cold in my veins but they did little more than make me look like a dollar store Halloween mummy.

The doctor arrived and within what felt like thirty seconds I had some of that bitter numbing juice squirted in my nose, coughed against it, "here, bite down on this', and then (flooOORP!) in went the 'scope.

I coughed and coughed against more of the liquid and was told to just swallow it. I could not get them to back of or stop; there was not twilight effect of anything going on and I was most definitely awake and aware of the tube poking around inside me. I kid you not, it was terrifying.

This was where my gestures and gripping must have been noticed because I kept getting what were probably intended as reassuring remarks that we were almost done. In my head I steeled myself to just stay still and that it'd be over with soon. At no point did I fall asleep. I understand the need to get caught up after arriving late to work, but I don't appreciate my comfort being the corner that was cut. :(

Headed home, things just got worse. There was just a little blood with the first few coughs and that cleared up in no time. My chest however felt like I had simultaneous heartburn and severe congestion. It hurt to breathe. It hurt not being able to breathe deeply. I fought against panic for hours until I finally just begged Jody to pour me a drink; rum over ice. I needed something to dull the edge. I'm sure I was lit for a while but I needed a break from the pain. I was too tired to keep my eyes open and then I fought to find some comfortable position to try to sleep.

I've recovered a little over night but I still cannot lay flat without a lot of discomfort. Sitting upright is best for now and, though it is early in the morning, I am awake. Hopefully I'll have a little more recovery today and be able to lay down to sleep by tonight.

In the meantime, if you're getting a bronchoscopy, make sure they knock you out!!!

A taste for adventure

2009-09-14T06:54:00.013-04:00

So the big weekend arrived and I'm certain Jody will be posting soon, but not without a tempting wrench thrown my way...

Wednesday last, I received an email inviting me to New Jersey Motorsports Park as a guest of Volkswagen for rounds 8 and 9 of the Jetta TDI Cup. I've been itching for two years now to see these cars in person and free infield tickets (and swag) are awesome... if I could make it.

Dovetailing off the positive experience on my feet over Labor Day weekend, I rationalized my way to NJMP, solo, and then on to the in-laws for the weekend. At worst, I'd catch practice on Friday, get way too tired, and we'd have both cars in PA to be driving home as a caravan. At best, well, let's just say at best was the case that materialized. :)

I made it a hundred miles through constant rain to NJMP at around noon on Friday and found my way to the infield. I'd nabbed a sub and fueled the car just as I reached Millville so I was good to go. That was when I noticed there were cars on track...

Sure enough, the TDI Cup cars were out for practice. I was astonished at how quiet the cars were! I am not kidding when I say they sounded like the space cars from The Jetsons. They just whispered by so quietly that I could hear water splashing inside the fenders and the rapid bzzzz of brakes and rain tires against the ground. On Sunday's race, one ARCA fan (NASCAR minor leagues) asked if the Jettas were electric cars. I reeeeally want to drive one now.

They're friggin' fast too... they were on Thunderbolt set up for the fast turn 2/3 (no chicane) and turning 1:38 laps; faster than 4/5ths of the entire Pro-IT field. (As an aside, I timed a few of the SpecE30 cars in Pro-IT and they were in the :38 to :40 range giving me an idea of how my BMW may measure up some day.)

I was feeling good and did a little be-bopping around the VW area hoping the camera in my new phone would not disappoint. Not too shabby, eh?

Incidentally, the driver being interviewed above is Tim Megenbier, the current points leader for the series. If he finishes the next and final race in 15th place or better, he will be the series winner for this year and probably on to some more exciting drives. Last year's champion, Josh Hurley, is currently teamed with Ian Baas in the APR Motorsports VW GTI #171 in Grand Am's Koni Challenge. There are videos online, including a great documentary of innaugural TDI Cup races from last year. Search Youtube for "Racing Under Green."

I chose to head for Mom and Dad Schumacher's place about mid-afternoon not really knowing what traffic might be like. The new GPS mapped me through Philly, but it could do nothing about Mother Nature's choice to resume pouring nor of my choice to be driving in the middle of rush hour. Another hundred miles from Millville to Easston took nearly four hours. Fortunately I had some of my sub andwich and a cooler with drinks. I stopped twice along the way to stay sharp.

Saturday arrived and the anniversary surprise was a huge success. I will let Jody do the talking there because she planned the party and did all of the legwork.

I wasn't so sure I would make it back on Sunday for the second set of races. Catching Friday's practice and qualifying had been great, but the drives in the rain had required a great deal from me and Saturday night I wasn't perfectly comfortable... ifyaknowwhatImean...

Still, I pre-packed and made sure I could go back Sunday morning and chose to decide along the way if I was too tired to continue. I would rather have tried and limped home than have chickened out.

The drive on Sunday was great. No traffic, anywhere, and I made the track before some of the drivers even. The paddock had definitely filled up with the full measure of Pro-IT and ARCA teams so there was a lot going on. I caught the Pro-IT race and timed a few of the cars I was most interested in being careful not to overdo it too early in the day.

For the TDI Cup race, I made my way to the grandstands between turns 4 and 5 and was happy I had. From there I could see very well and follow a number of close races within the field. I love spec racing, where all of the cars are evenly matched, because the drivers really have to work to get ahead and to stay there.

I happened to have chosen the same spot that AJ Nealey's fans had set up camp. When he would drive by, they would cheer really loud; loud enough to startle other drivers! AJ's posse seemed to grow with each lap and I too started paying attention to where he was in the field. He'd started 13th, worked his way up to 9th, but ultimately lost a place and finished 14th. Still, the friends and fans there for him helped make my race.

Ultimately, Devin Cates finished on top capitalizing late in the race on a battle between Mark Pombo, Andrew Novich, and Taylor Brokemeier all of whom made some great moves right in front of us diving and dicing at turn 5. Pombo held on for second and series points leader, Tim Megenbier, patiently drove hard and clean in a solid fifth all race to pounce on third place securing valuable points for a series of consistency. He has definitely had his eyes on the series win more than any one race here or there.

I got to catch the trophy ceremony presented by none other than Tom Hnatiw of Speed Channel fame and was in the wrong/right place to get splashed with champagne too. I suppose I can cross that experience off my bucket list. ;}

But wait, there's more!

I was feeling great, really. The weather had improved and I'd seen some really great racing, but it was only time for lunch. No offense to you big power fans out there, but the ARCA race really didn't hold my interest so by the time the TDI Cup support race was over, I was ready to scoot...

I hmm'd and haw'd a little and poked around my GPS wondering what the difference might be going home through central Delware instead of back up through Wilmington. Obviously it's a longer trip, but I've driven over big bridges before. I've never taken a ferry. :)

Even though it cost me an extra hour on the road and and extra three hours to catch and ride the ferry, it was worth it. The time spent waiting for the ferry and then relaxing on board for the crossing let me take it easy, grab a snack, and enjoy myself for a nice change. I do wish Jody had been with me because it was a little lonely and she could have taken a better picture of me. ;)

knock on wood

2009-09-09T06:27:00.002-04:00

Just a quick post this morning before work.

The first week back on Xeloda has passed now and it wasn't too bad. I started the pills Monday evening last week so I would finish them Monday morning this week. I had anticipated they would hit me with some force so I looked ahead and made sure I didn't have anything in the immediate future that I might miss before starting. Sure enough, they tired me out right away and by Thursday last, I needed to stay home.

I kept at it, eating and drinking well, and even made it back to work the next day. I felt okay enough to take an impromptu trip to the track, chauffeured by by friend Will, and watch some racing on Sunday. That may have been pushing it but the Monday holiday slipped by with no major downtime and week number one was done.

Thanks to my new friend, Ryan, I found some Tofutti and coconut milk ice creams at David's Natural Market (hi, Pam!). They were remarkably good though last Thursday's sick day might have been the net result of a little loss of self control... a pint of ice cream, even if it's Sco-patible, probably wasn't my best choice. ;)

ice cream

2009-09-02T14:23:00.003-04:00

No, this won't be one of those posts where I lament now having to avoid dairy. I'd loooove some ice cream and I've made noises about contacting Ben & Jerry's in hopes of some really good lactose-free concoction of theirs. No, this is a philosophical post; about an analogy I feel is true.

When you answer your door and find a Jehovah's Witness waiting for you, what do you do? I can imagine you'd do what I've done a few dozen times with varying degrees of polite rejection. I'm not interested.

Well, week before last I hushed the dogs as best I could and stepped outside to politely turn another one away. I wasn't really in the mood to debate Racism in our country nor to agree or disagree on what God might think of such pettiness. But I indulged the fellow briefly, politely accepted the literature, and made it clear I am secure in my faith figuring shooing a fly away would be less messy than squashing it.

I think he was intrigued because he dropped by and spooked Jody when she was home. I hadn't told her about the visit because, well, I figured I'd never see the guy again. He caught me awake the other afternoon on a repeat visit which, I admit, kinda annoyed me. As I went to the door I became determined to, politely, tell the guy, "no, thank you," and please don't come again. We may not be perfect in this house, but we're not looking to change up our ice cream toppings either.

Again it was the Racism topic and what the Kingdom of God was going to do about it and why God would cause me to suffer with cancer. Now he was making it personal though I'm sure he meant no offense. I stood my ground same as you can read back through this blog and pointedly insisted it's not my will be done, but Gods. If he was going to try pointing at scripture, then I was going to point it right back at him.

Was I interested in more literature? No, thank you. How about a Bible study exploring why there is suffering in the world. No, I'm pretty comfortable with the reasons for suffering and my responsibilities when faced with it. Here is where I interrupted and explained I'm just not looking for anything new for my ice cream.

You see, when we visit the ice cream shop, we are offered all manner of flavors and toppings which are a lot like churches and fellowship. As long as there is ice cream in the dish to start with, we're all having, "ice cream," which is to say we're all reading the same Bible and worshipping the same God. Now some churches go with the plain vanilla, liturgical, ordered, etc. Some go only just so far and have chocolate or strawberry, singing melodic hymns that rhyme in English instead of funky-metered Latin translated into nerdy white guy rap. And some churches whoop it up with bananas and cherries and stuff like electric guitars and music videos and, what I can only best describe as, cheerleaders.

Meanwhile, as long as it's the Bible being taught from the pulpit there is no worry about frozen yogurt or tofu or Frostee frozen food products. What we put on top, the style of worship we each choose in our churches, does not matter.

And that's where Mr. Jehovah's Witness and I could agree. No amount of added literature in his attache was necessary because I've got my Bible. He is free to put pineapple and caramel sauce on his ice cream... as long as he's got ice cream in his dish.

Man o man could I go for some Chubby Hubby right about now. ;)

August... where did the time go?

2009-08-30T10:04:00.002-04:00

Well, I'll tell you...

Thanks a great deal to Jody and my Mom taking good care of me, the Avastin backlash was broken. I met with Dr. Shih one more time and was doing muuuuch better, just in time to take a little trip to Cape Cod.

Our friend's sister was getting married (congratulations and thanks, Robbie and Jeanine!) and Jody and I had been planning to spend a long weekend in Falmouth to enjoy the beach and the wedding. That went really really well for me despite my initial ambivalence about New England and anxiety over my situation. I found that as long as I ate whole foods instead of things that were too heavily processed, I felt pretty good. I wasn't running marathons by any stretch, but I did okay. Getting home by myself was a challenge, but I lived. Jody stayed on for a few days more to visit with Sarah (Jeanine's older sister).

Sadly though, Jody's flight home was abutted by the death of her grandmother. We repacked and drove home to PA for the funeral which was a tender time. Grammy had lived 93 vibrant years and the time taken remembering and honoring her was well spent.

Back here at home I'm leaning into the wind that is Xeloda, once again. I'd had a visit with Dr. Lee while Jody was still on the Cape to discuss the analysis of my most recent CT scan (of the 17th). The known spots have grown a little and have multiplied in the interim of Avastin alone so that trial seems to have failed. She and I also discussed recommendations made by Dr. Hwang, a research oncologist at Georgetown Univeristy Hospital whom I'd met back on the 19th, right before the trip.

Dr. Hwang had seen me to answer my questions about possibly participating in a clinical trial applying a developmental colo-rectal cancer vaccine as a therapy. Unfrotunately, the trial had already closed, but since it was a therapy in concert with chemo and my CEA rising was steering me back to chemo, why not check it out?

He did send me home with details of another trial but one using a different chemotherapy and that may or may not be one that has had good results with my particular genetic goulash. Dr. Lee ordered the DNA test for K-RAS to see if my case might fit and better help me decide, but there are other factors to consider. I'd have to move my care to Georgetown and that would mean routine trips into the city for drips and tests and such; not very appealing. The traffic sucks pretty much all day and the insult is complete only having to pay for parking. Bleagh.

Still, the K-RAS test might also indicate that another chemotherapy could help me more. I don't really have to do much but wait for the test results.

In the meantime, my CEA is rising and the lesions are trying to grow and spread. Rather than mix things up too much at once, I elected to go back on Xeloda alone mostly because the side effects are pretty well known in me and I've responded well to it several times in the past. I know it will increase my fatigue, but I also know I can avoid dairy and heavily processed/preserved/fatty foods to head off the worst of the effects. I think this next batch will go a lot easier than before.

If the K-RAS test comes back indicating I can go for the trial or that another chemo might be more successful, great. While that is going on, I'd like to try to define what state I might have to reach before surgery to remove the lesions would be worth my while. I'm also going to lobby Dr. Lee to have biopsies taken again; to this date, only my liver has ever been needled and it came back negative. If I'm taking treatment for metastatic disease, I think it should be verified.

Some part of me chuckles at the thought that an HMO would have probably balked at any treatment I've been getting until those biopsies told them they had to pay... ;)

back from the gastrointerologist

2009-08-13T16:16:00.002-04:00

For those whom haven't seen my facebook updates, I've been struggling to beat some very unusual diarrhoea that the usual fluids and bland diet weren't knocking out. Even a weeks' worth of Cipro didn't break it. I've missed a lot of work and been very very depressed and unhappy. Life really sucked.

Past tense.

I don't want to claim victory just yet but the past two days have been a lot better. I paid a visit to my gastrointerologist last week who sent me homw with test vials to fill up. Ahem.

I met with him again today and learned all of the tests came back negative. It's been three weeks since my last Avastin drip. With the improvement I've experienced as of yesterday, we're both pretty confident the Avastin was the problem.

That puts me in a tough spot though. The Avastin was supposed to be a maintenance therapy; something to avoid lots more chemo. Thus, my next visit with the onc will probably mean chemo pills. Again. :(

While I'm glad this seems to be untangled, I'm still on a rope. I don't know if I can get a smaller dose of Avastin or possibly a stiffer shot of chemo, but it's sure looking like I'll be hypermiling whatever therapy I go to next; gas, coast, gas, coast...

I have a CT scan on Monday to see how the Avastin alone measured up, but it's going to have been nearly four weeks since I had to cut it off. The mets may have had a chance to grow in that time and negate the time I spent off chemo. On the flip side though, that scan will give me fresh images to show the research doctor I'm meeting with next Wednesday down at Georgetown University...

They've got a study going on right now applying an experimental colo-rectal cancer vaccine as a therapy coincident with chemo. I might qualify and, frankly, if I have to go back on chemo anyway, why not participate?

thematic ending

2009-07-29T14:58:00.003-04:00

The theme for this months' posts, if you haven't already guessed, has been "How much can Life possibly suck?"

To close out the month on a thematic note, today's visit with Other Dr. Lee was not terribly heart warming.

I learned little more than what the current "standard of care" is for a patient like me and that what comes next promises to be more irritating and still not promise a cure. I don't know if I feel more naive or misled but the certainty of never ever getting rid of this **** is crushing.

What little more I did learn was that there may be another study out there I might qualify for. This one is at Georgetown... I just got off the phone with them now relaying some preliminary details about where I'm at in this mess. We'll see.

Meanwhile, Regular Dr. Lee consented to letting me skip the next Avastin drips in an effort to get back onto an even keel. It has been murder eating bland foods, feeling no better from the antibiotic, and hardly sleeping needing to be within a few yards of a bathroom around the clock. Depression is drowning me but there is nothing any therapist is going to say to me or sit there and listen to that changes the reality of living like this. Sucks does not begin to describe life like this.

Tune in next month. Maybe August will be rainbows and unicorns?

desperation

2009-07-24T14:33:00.002-04:00

Can you grasp at straws in an ordered, controlled manner?

If you can, I think I'm learning how... the hard way. ;)

Let's be honest for a moment. My ability to endure pain and discomfort has grown dramatically throughout this gauntlet, but at the expense of my sensitivity to others as well as Jody's patience and capacity to forgive. The 'perfect storm' that struck a few weeks ago thundered through both of us leaving two hearts nearly broken. What's worse is as the storm passed, the floods came and I dearly wish I were only being metaphorical.

In the last ten days I have had major league diarrhoea that has kept me from work more than half of the time. I'd thought I'd eaten something bad though I had been abundantly careful in choosing what to eat and drink. After a week I visited my gp who now has me taking Cipro to kill off a possible infection. It sure feels like an infection though halfway through the antibiotic now, nothing has changed. In fact, today things seem to be worse... the day after my most recent Avastin drip.

So I look at the Avastin website and see diarrhoea is a possible side effect. Great.

an a guy get a break? Or do I say stop to the Avastin? I've already stopped eating a number of things to avoid upset and the top of the list now is dairy; being stripped of lactase is a side effect of Xeloda. The Avastin was supposed to be a test to see if we could keep the lesions from growing (we will scan on Aug 21st to see) but that gameplan has left me feeling cheated... cheated out of ever being healthy.

I'm tired of being sick; too sick for Cyberknife but not sick enough for surgery. I'm tired of taking chemo but not enough to kill the lesions off before making me feel I'd be better off dead (insert old John Cusack movie clip here). I am God-damned tired of the burning, itcching, blindingly painful hemorroids I get with loose bowels that never seem to firm up. Right now, at least the diarrhoea passes quickly (like lightning) though our washer and dryer have been getting a workout.

I find myself rationalizing all manner of things. They range from stopping treatment so I can salvage some quality of life even at a shorter quantity, all the way to looking for a rectum transplant or some biomechincal device to control my bowel movements. I've missed the ileostomy I had to wear baggies for through the early part of last year. I've found a surgical procedure called a BCIR pouch that would do away with my large bowel in favor of an internal ileostomy of sorts that I'd have to empty with a tube. It sounds like a miracle... it doesn't hurt, people who have them eat whatever they want, they swim, play hockey and football, women with them can have babies, all kinds of great sounding stuff. If I come across any testimonial of patients who have it and race cars...

I'm adding it to the list of things to look into more because having questions is a weird form of hope for me. There is still something out there that might be worth it.

I'm also seeing another oncologist next week; a guy my oncology clinicians have heard of and has a good rep. The irony is -his- name is also Dr. Lee so there may be a little confusion of who's who coming up soon. ;)

I'm not going to feed him what I want to hear. I know I'd like to be more agressive and I want someone to say to me they think they have a plan that kills the disease... not just keep it in check as more and more of my life passes me by.

some explanation

2009-07-08T22:05:00.003-04:00

The downside to sharing this way is things still come across very black and white even with the advent of emoticons; body language only so well represented through clever keystrokes.

You guys see me use this one a lot. ;) It's my way of cocking my head and winking to add emphasis to a point I'm making (writing). Unfortunately, I don't have any emoticons at the ready to convey the frustration of the perfect storm that struck this past week.

I reeeeally don't want to go into it here but let me assure everyone I'm not stopping my treatment. The thought crossed my mind and I've dwelt on it before because the plain fact is, I am utterly mortified of what seems to be coming to pass; a life lived in yo-yo cycles of chemo constantly stepping to one side and never getting anywhere. Or worse... slowly being picked apart, piece by piece. I already feel like less of a person, less of myself. That angers me more than I may have let on.

And though I know what matters is how I behave in response to feeling angry, I lose that battle with my self control because the Reality I often see ahead of me is one where there is no hope of ever breaking out. I feel trapped except to stop dodging the inevitable. I'm sorry for saying it, but it is the truth.

This is with me all the time and I know it salts what I say and do. That last blog was barely the tip of the iceberg.

Just do me a favor and pray for me and Jody right now. We need it.

it gets worse

2009-07-07T14:27:00.002-04:00

So, 'last post was a downer. Sorry, but this one is too. Feel free to stop reading now.

My CEA is back up. That's a very good indication I'm heading back to chemo and there is nothing I can do about it. I can pray, I can think positive thoughts, I can sacrifice a goat... won't change a thing. :(

Crossed with all of the other crap happening in my life, I am seriously considering stopping treatment. I hate to say it but I honestly do not know what I am still fighting for. This is NOT even close to worth it. :'(

Crap on a stick.

2009-07-01T18:03:00.002-04:00

As posted on facebook...

I just got an invoice for outstanding leftover payments to my oncologist. Though there's a lot from Kaiser, they're a tiny fraction of the pocket portion Aetna has left me with. It appears to be just the first quarter of the year... and may allude to thousand-dollar copays, per visit, for the Avastin... that I get every other week... three moths worth aren't on this invoice...

Attack of the Clones is on television, sucking.

The NetApp at work is expressing that same firmware bug from back when I first started; don't know how to/haven't had a chance to fix it.

And it's now raining so I can't take my doggies to the park to let any one of us blow off some steam.

To borrow a meme, FFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUU!!!!!!!!

I miss you, Brie.

2009-06-03T17:31:00.003-04:00

I apologize for the cliche but I wanted to spend just a little time reflecting upon Brie's passing.

I admit I am still angry though I am immediately tempered and comforted by both Jody and Alex's words from those dark days last year. No, my faith comes with an acknowledgement that God's hands are not the only forces at work. Yes, Brie is alright and some day we all will be too.

Not today though. Not yet anyway... but it's coming.

Remembering now scrapes that scab away and it hurts all over again. Yet, whatever the Reason, that Will I've hitched my star to as Perfect, if I really beleive it is True then I'm still here for some reason no matter what I'm feeling now.

Part of it must be to honor Gabrielle's memory and to support her Mom and her brother as my friends.

Through a strange coincidence I've been able to pledge some money to the Kimmel Center at Johns Hopkins; the place where Brie was cared for last year. We thought it was a miracle to have a place with doctors here close to home almost in direct connection with the hospital in Ireland where she first fell sick. I chalk it up to Providence again that one of the editors at a car magazine I subscribe to will be racing and counting laps just an hour or so from home to raise funds for the Center. It was his car and the articles following his build in the magazine that encouraged me to buy the BMW I'm still chipping away at. I've made my pledge in honor of Brie.

I am hopeful to be able to make the race over the weekend of June 20-21st. If you would like to join me, please do not hesitate to ask. If you would like to make a pledge, you can do so at Laps for Life. The driver/editor I'm sponsoring is newly wedded, Scott Lear, the Club Editor for Grassroots Motorsports Magazine. Pledges are per lap for the race which is expected to be between 10 and 15 laps; the race is the most laps within the set time.

In closing, let me say how thankful I am for having known Brie even for such a short time. Let me also ask for your extra special prayers for comfort and care for her mom, Holly, her brother, Alex, her dad, Mark, and those others whom were closest to Brie. We are all reminded of her bright smile and sassy attitude today and though there may be tears left, her smile is still unstoppable... don't even try to resist it. :')

fingers crossed

2009-05-21T06:41:00.002-04:00

A quick post to refresh the blog before work today.

Yesterday I went in for a CT scan. I chose to go back to the same imaging facility up at St. Joe's in Towson so I'd have two in a row from the same place. This is me plotting/planning ahead for the news that, sorry Mr. Scofield, but you still have cancer.

I want to say, "eh," but it just makes sense to think this way. it sounds hopeless i know, but the pragmatist in me takes over. I'm happy having a plan instead of just hoping... but that doesn't mean I have no hope. ;)

If I'm still sick, the second set of images from the same lab will give me something useful to show the doctors at Franklin Square. Thinking ahead, that will give them something to compare to in reconsidering me for Cyberknife. If I am still sick, perhaps now the lesions are small enough for them to think they have a stab at them. Bad pun intended.

And if not, I've got all the forms for the NIH study so I'm in position to make a move on that front too.

I know the better analogy is chess, but I don't play chess. Instead, I picture it like finding a slower car ahead but not really having a place to pass for a few corners. I know what I've got and I have a very good idea of what lays ahead. I reel that car in close enough to let him know I want by. There's no pressure; I don't have to shovel him through every corner. It's time to relax a little even in a technical section... and when I get a chance to pass, I'm right where I should be to make it happen. Meanwhile, check the flags, hit the marks, and tap out a little thank you with my fingertips as Patience pays off.

To close today, I'd like to ask anyone reading to pray for Jody today and over the next little while. She's been painted into a corner at work and struggling to meet some deadlines that are neither reasonable nor flexible. It's unfair and she's killing herself to do the best she can but missing the date seems inevitable; the work that needs to be finished won't be done on time and there are technical problems conspiring to further seal the bum deal. She takes a tremendous amount of pride in her work so not finishing is bad enough. Unreasonable customers and management who cannot bend are not helping in the least.

Another milestone

2009-05-13T15:40:00.002-04:00

Good afternoon, all.

Thanks go to Tina R. whose comments today jogged me into making a new post. I have a little bit to share, the least of which is today is the last day of chemo! :D

Believe me, I am glad to be stopping the stuff. I don't have any foolish notions of guzzling a gallon of milk any time soon, but I can say I did get to try some soy-substitute dairy product that didn't kill me. Jody paid a visit to Trader Joe's recently and came home with these mini chocolate ice cream sandwiches that are hella good. They're about the size of a deck of cards so they help portion control too which is good because I'm also weighing in (yesterday) at 236lbs.

It's getting kinda bad... first my pants were too big and now it's my shirts!

Yesterday was a checkup with Dr. Lee and we discussed a few things. First up, I'll be getting a fresh CT scan on Friday afternoon to see how well this batch of chemo has done. Desperately hoping for No Evidence of Disease, but I'm a Realist. We shall see.

I'd love very little less in my life to be out of the treatment stage finally. Planning ahead though, we talked about the NIH thang and maybe getting my broken port removed. If the scan comes back and says I need more chemo, we go from there... but we may get a chance to have Franklin Square reconsider me for Cyberknife (which drove my decision to get a second scan at their facility to help grease those skids just in case). If Cyberknife is still a no go, I'm going to pursue the NIH trial. I'd held off on responding to NIH right away out of concern for wasting their time, but Dr. Lee encouraged me to move on it now and let them worry about their time being wasted.

So there's that paperwork to fill out and a ridiculously invasive questionaire from work about my finances that I'm waiting until the very last day to submit. I am finally getting an assistant I think may stick around longer than a month... right AFTER I needed one. I've proven I can do my job... all by myself... working only half days... while sucking down poison pills. Lower case "boo yah."

And that's not all. I've killed myself doing several things lately I wouldn't have dreamed of.

Those of you who follow Jody's blog know she was excited to be a part of the Gatorade RePlay football game between her alma mater, Easton Area High School, and cross-river rivals Phillipsburg. I had a good time too but was really hurting by the time we got home.

I chipped away at stuff around the house during a weeks' worth of rain until mustering the courage to try mowing the grass. That was a big mistake and I only got a fraction of it done. My allergies reminded me that I spent most of last Spring cooped up in the house safe from all the pollen... :a-choo!:

Indoors again and trying not to let sniffles turn into an infection, I put my head down against our home network and pounded out a correct rule for the firewall to let Jody's VPN pass through. She is muuuuch happier now and I no longer have to duck underneath a hundred-foot long ethernet cable strung up in our foyer and living room. ;)

:blam!: NIH fires back

2009-04-24T23:09:00.002-04:00

Just a quick update because it's late after a long day of driving...

NIH wrote back. In spades.

I've now got an arm's length document defining the acceptance criteria and two lengthy forms to fill out. Doesn't get me in, but it doesn't shut me out either.

In other news, I also got a reply email from an oem supplier to VW who says my seats already have heater elements in them and all I need are the wires and the controls... and I have the controls.

dangit...

2009-04-15T11:13:00.002-04:00

'Just got an email from NIH...

I'm confused though. I'm not a candidate for the PHP trial because I've not had Irinotecan; the IRI part of the FOLFIRI cocktail some colo-rectal cancer patients get. But, if I have Oxaliplatin, I might be reconsidered.

Um, I had six month of Oxaliplatin; the OX part of FOLFOX.

Does that change things? We shall see, I suppose. I've emailed back to clarify.

Meanwhile back at the ranch...

I'm finishing off round four of the Xeloda today. I'm unsure of the cause, but I believe I have developed some lactose intolerance too. I'll look into that as a side effect of Xeloda and/or Avastin but I don't remember seeing that as a problem.

There is no denying it though. I just happened to have not had any milk, yogurt, or cheese for a while when trying to bounce back from so earlier lower gastrointestinal distress... and as I was feeling better I tried to get some probiotics back in my gut with some 'active' yogurt. Bad news. I was back in Hell in a matter of a day.

'Worked my way back up from there and had some breakfast cereal after a bit. I believe Dante saved a seat for me on the seventh level that evening.

When I thought I'd spotted a pattern, I decided to work with it. Sure enough, life has improved a lot. There's other stuff going on, like a headache that seems to come and go with the barometer, but cutting out the dairy has made a big difference.

But it sucks though because I loooooove milk. Some people have a palette for wine or fine foods but I am a connoisseur of cow juice. And before you go recommending Lactaid or soy this, I've already decided I'm just willing to abstain for a while. I sincerely doubt it's the Avastin because it's been a problem for a lot longer than that good stuff. I want to wait for the chemo to be over with and then I'll experiment with adding the white stuff back to my diet. For now, it is more important to me to be feeling well than to be drinking milk or noshing on cheese.

no test more than we cannot pass

2009-03-31T15:40:00.002-04:00

Peter wrote to the Church at Corinth and said it this way, "No trial has overtaken you that is not faced by others. And God is faithful; He will not let you be tried beyond what you are able to bear, but with the trial will also provide a way out so that you may be able to endure it." This is something I believe and was the first thing I grabbed onto as Truth the very day this gauntlet began. (1 Cor 10:13)

And I shake my head and wonder how the heck I'm going to get through this.

I'm not. Well, not alone anyway. ;)

The news from Josh and Joanie was uplifting. The details came in steadily that I'd become an uncle to a little baby boy. After holding him and spending time with him, Joanie and Josh named him Simon. Calls here and there to my folks and Josh gave me little boosts all weekend. Monday arrived and Life kicked back into gear.

My assistant, the guy I really really needed and was so happy to have finally brought onboard and begun sharing work with, gave me his two weeks notice yesterday. I really couldn't blame him. He'd been actively seeking an assignment when I came calling. Through a breach of proper notice, he was offered a contingency job elsewhere but still within the company. It would have been, like a broken record, a shorter commute and more money for him, just like my first guy. He got bullied into staying on my task, if you ask me honestly. So hearing that he would now be leaving for a new company altogether came as absolutely no surprise.

I issued a tactfully muted 'I told you so' to my management as I now have to interview more candidates less than a week before the pressure cooker starts. I have back to back to back classes needing full support all the way through the first week of July. I'll be off the chemo halfway through it, but also finishing the chemo half way through it... ifyaknowwhatImean [/Vern]

But this isn't more than I can handle. Um, yeah. Thanks for that. ;)

The truth is, when my last assistant was here, or rather the lazy bum who was sitting at his desk, I was doing all of the work. It was getting done on just my limited hours and with my somewhat rusty skills and cloudy head. Yeah, I'm feeling the chemo more and more as we go, but I am done with round three on Wednesday and halfway through the forest. It might be tough, but I'm not scared... I honestly think I could live without an assistant. It's not like I'll have much free time to train anyone until July any way. I need to be very discerning in the next few days as I am or am not able to interview new peeps.

Shifting gears completely, please say a little prayer for me as I've been in touch with the Cancer Center at NIH. My loving neighbor Melissa sent me a news article on a series of trials for a new procedure aimed at treating inoperable liver cancer; specifically that which has spread from other tumors. I drilled through and found the NIH links and left a voicemail today to see if my case is one they may need volunteers for.

It doesn't sound too scary, but it also doesn't sound like a breeze. I'm also concerned that it may cost me a fortune. That would suck because I feel very strongly that these trials may be a way I can do something good by helping the research along and maybe giving someone else a better chance in the future. My guess is that they'll want my history, yadda yadda, and we'll go from there.

- Sco

Did anyone get the plate off that truck?

2009-03-26T17:54:00.003-04:00

I knew I'd been slacking on the blog, just not by how much.

It's been a hellacious few weeks with far more lows than highs, but let me at least get one of those highs out there. Within the next few hours, I will be an uncle. :)

My bil called me just as I was about to sit down for drip number three today. I hesitated to answer because I was already depressed so I quickly took his call and explained I was at the oncologist. He told me he and Joanie were on their way to the hospital and that she'd be induced today. It must have been about noon their time, but it really cheered me up. I needed a few minutes to dry my eyes but the IV and the drip went nice and easy after that.

It was just the kind of news I needed after these last few weeks. I know it's not going to buoy me too far though but I'll still enjoy it. I'm not even sure who's reading this any more so I'm kinda doing this for my own therapy.

Yeah, drip number one pretty much crushed me. I was already defeated and it did not help that work had become such a strain. You see, when I'd resumed working I'd done so with the express direction that I'd be working with someone. My customer needed a full time person with my background but I was only available half-time. They okayed hiring a second full-time junior person and I'd be responsible for training him/her... kinda like training myself out of a job, but it would be honest work again.

The first guy they hired after I'd phone interviewed him and was confident he was a good guy. He quit after a month when he got an offer for more money and a muuuch shorter commute. I couldn't fault him for it.

The second guy they hired came on board as a total surprise. He showed up the day I was told he'd been hired... I never even got to see his resume'.

I could go on and on AND ON about what a complete ASSHOLE this guy was, but I'll let my rare use of such foul language speak for itself. I could sympathize with the guy if he had even the slightest work ethic, but he clearly felt justified not doing a single thing the entire time he was on my task. It wasn't the job he'd interviewed for so he didn't have to do it. An honest person would have done what was asked of him even while leaving no stone unturned to find a better job, but not this guy.

When I had finally had enough and began documenting his disappearing acts, refusals to work, playing games and watching Internet videos on government computers, and SLEEPING at his desk, it then took me nearly two months to finally get him fired. In his final two weeks, I found new and more creative evidence that he was sabotaging the lab, making deliberately wrong configuration changes to cause things to stop working.

Thankfully I was able to interview and hire a competent replacement. Even if he is not as skilled as I'd like him to be, he has a good ethic and is willing to learn new things. In his first three weeks alone, he's been a tremendous help as the chemo and the side effects have mowed me down like a runaway truck.

I am trying very very hard to stay ahead of my diet and fluids, but the smallest mistake costs me for days. I cannot recover fast enough and that drags my spirits down even further. I won't say I'm on an upswing now because I felt better a few days ago and know, with today's new round of pills, I'll be back down again pretty soon.

I just need to get through to the middle of May so this batch will be done and I can get a break to go see my niece or nephew even I won't be able to hold the baby. :'(

insert sound of balloon popping

2009-02-19T07:29:00.002-05:00

Sorry, gang, but post #101 isn't going to be bubbling with joy.

I got through that CT scan on Friday the 13th despite the completely humor-challenged radiology tech who administered the procedure. I'm still sporting a bruise from her IV ministrations, but it doesn't hurt. 'Got home from Towson just in time too... :whew:

The report went to Dr. Perry with the Cyberknife raditaion team who took it, along with my entire case history, back to his gastro disease board for a second, more detailed look. Unfortunately, they feel there are just too many spots still showing to make Cyberknife a good recommendation. even though they're not glowing on the PET scan from last month, they feel chemo is the better approach. If things are squashed more in the future, Cyberknife might be a good choice.

This wasn't what I wanted to hear though I fully understood it was possible, if not the more probable outcome. Still looking for the silver lining though, it also means the diseased areas are too small for surgery. That clicks with what Dr. Grasso said he observed through the laproscope waaaaay back in November of 2007. Nonetheless, I spent the majority of my afternoon in tears and generally depressed. I manned up and called Dr. Lee's office to advance my followup with her from the 3rd to tomorrow, the 20th. There is now no reason to be postponing chemo and I want/need to get it over with sooner rather than later.

By my reckoning, another twelve weeks sees me finishing in early to mid May. I absolutely HATE realizing that means another truncated summer of track days not to mention a hit to my disability income. It will have been a year now at the end of this month.

What I hate most though is the absolute dread I feel toward dropping those Xeloda pills AGAIN. They just drag me down so badly. I don't want to stop working, especially now that it looks like I'm going to get a good teammate to work with. But I know the pills are going to drain me, upset my stomach, interrupt my already fragile bowels, and generally make Life miserable. I don't know what to do. :'(

100th post...

2009-02-06T13:15:00.004-05:00

I couldn't think of a clever title for this post other than to notice it would be #100 on the list. When this started, I naively thought I'd be in the hospital for a bit getting surgeried (tm), miss a few weeks of work, and then all would be good again. I never thought I'd be making a hundred posts to a blog or enduring this gauntlet. Yeah, I'm a little depressed after all this time but don't go rushing to dial 911. I've said it before that if someone told me all the details of what Life would turn into after this, I might have seriously considered doing nothing.

But I did something and I'm pretty much committed to seeing it through now. It'd be one helluva waste to have suffered this much and then cash in my chips early. but that doesn't mean I can't try to do something to make the rest of the ride easier.

Which is why I've been on the edge of my seat with the Cyberknife peeps. As I posted before, it might be an applicable therapy for the metastases I still want rid of. If I'm lucky, I'm a good candidate and maybe won't even need more chemo. I might be an okay candidate and get to mix the two. But I'm realistic and know I'll be back on the chemo if Cyberknife just isn't for me.

I've been unsuccessful in squelching my hopes for consideration though. Even over email I'm vibing a little too much; so much so that I got a 'calm down, be patient' kind of email back the other day after offering again to share all my CT and PET/CT scan images if they were needed.

I got a phonecall from one of the radiation oncologists who was looking over the documents and images I was able to submit. He wants to share them with some other doctors and get a larger consensus opinion and asked if I'd be okay with that. Of course. I concisely listed the doctors I've seen over the whole saga and emailed them to him today and will wait, patiently, while the chew on my case a little while longer. I did explain that Dr. Lee had given me this month to check out Cyberknife and that we're in no hurry. I closed with an acknowledgment that I'm not looking for any shortcuts but am also interested in less discomfort if an alternative treatment might mean dead lesions without a dreadfully ill Sco.

So, please pray for patience for me. :]

:D part deux

2009-01-29T06:32:00.002-05:00

If I had told someone, anyone, what I was going to do, they probably would have restrained me or very seriously admonished me.

It needed to be done though. And I did take a break here and there, but I did my part and am happy to have helped.

We got our first ice storm of the winter on the tail end of a little snow. You mid-westerners will warm with laughter at the thought of less than an inch of winter seizing the machine of industry here. I still do too. But when it gets glazed over with a quarter inch of ice making the whole world look like a donut, it does get hard to get around. It had to go.

I instinctively wait when there is ice in the forecast. Years of experience have taught me it will be MUCH easier to get rid of with snow underneath than clearing anything and letting the ice form on the ground. If there are clear skies forecasted afterwards, even better. Let Nature help!

Of course, the day after a 'scope and like nine weeks off the poison probably aren't the best conditions for lots of shoveling, right?

eh. Like I said, I did take breaks and I had help too. I also know from experience that shoveling by yourself sucks. If you have a friend, a neighbor, your dad, out there with you then it goes -much- quicker. A few of us chipped at it off and on over a few hours mid-day and the result is a nice clear street this morning instead of the slip-n-slide of death we started with. :)

And the strange part is, I felt good. For sure I got tired and way sooner than I used to, but I recovered with a little rest on those breaks and made three sorties until the whole drive was clear.

I need to share this with Dr. Lee on Friday and ask her opinion about Cyberknife.

For those not aware, Cyberknife is an extremely tight-focus radiation therapy. The beam can nail lesions as small as 1mm. It can track what it is aimed at killing even though a patient is breathing. There is some tailoring of the system to each individual patient and possibly small metal markers to place near the therapy sites, but the recovery time is far less than other radiation oncologies. Recovery compared to chemo is not even on the same page because only the lesions are targeted, as opposed to poisoning the entire body. Killing just what's bad or slowly killing the whole person hoping what's bad dies first?

I also want to get her thoughts on a theory I came up with about chemo and fat.

From what little I know about the liver, its job is to nab extra sugar from the bloodstream and convert it for storage as fat. When the body needs sugar, the liver takes care of retrieving fat and putting the sugar back into the blood. I also think I have it right that fat is stored in a LIFO type of system; that's Last In, First Out for you non-dataflow personalities out there. In other words, the youngest fat you put away is the first to go when you need energy (or are trying to lose weight)... kinda like the last box you put in the moving van is the first one you take out when you get to your new house.

From what I know of chemotherapy, it works because it looks like sugar. Cancer cells are dividing and signaling the body for food and, as the chemo floats by, they eat up anything that looks like sugar. If that happens to be the chemo, the cancer cells die. We chemo patients feel lousy because our healthy cells eat the faux-sugar and die too. Bummer.

I got to wondering if chemo is treated by the liver just like sugar? Is excess chemo stashed away as fat just like excess sugar? And if the newest fat is burned first in times of need, does that mean chemo-fat gets tunred back into chemo???

If so, then I think there may be a way to hasten chemo recovery; lose fat.

Notice I didn't say lose weight.

This has worried me for a while too. It is well established that adding muscle to the body is a sure-fire way to increase metabolism and lose fat. The more muscles there are, the more they need to eat. But with chemo floating around killing anything that eats it, new muscle cells DIE, and I've been told it hurts. A lot.

So, if I'm right, how do we burn off fat to get rid of stored chemo without adding too much muscle or suffering a lot of pain? My first thought is perhaps some sort of blood test to see if there is chemo still present. I don't even know if that is possible. Ideally, once the chemo isn't showing up, muscle building can safely begin.

We shall see...

:D

2009-01-27T16:02:00.002-05:00

well, after the horror of last night's prep, today's 'scope was a breeze. I had to get an IV and repositioning a piece of tape hurt worse than the needle going in.

Better news than that was a near sparkling clean report form the colonoscopy. Dr. Grasso took plenty of pictures and provided a map/legend of where the pictures were taken so I can share them with Dr. Lee. One polyp was found and removed. It was less than 5mm and gave no argument. Otherwise, the prep had worked well and everything looked great... giving no more weight to the PET scan analysis of "consistent with disease."

Dr. Lee and I will talk things over on Friday. I'm going to see if there aren't some more focused therapies or maybe trials that need volunteers to put the attention right on my little liver lesions. Say that five times fast! If there is something out there, I'd like to go for it. The chemo wipes out all of me in an effort to get these tiny little bastards. If we can zap them, and just them, I think I'd like to give it a try.

Gotta go for now; I'm due for a haircut. Meanwhile, I keep seeing Feedjit hits with searches that resolve to the blog or past entries. If you're one of those searchers and you need advice, my experience, or just a friend who's been where you're heading, please do not hesitate to comment or email me. I'm here to help!

do something

2009-01-22T10:07:00.002-05:00

Like a zillion others, I too watched the Inauguration on Tuesday. I'm not going to express any sort of opinion other than some disappointment at the 'personal resonsibility' message of the President and the irony of the National Mall left looking like a landfill. It was a great day, a cold day, but pick up your trash, people!

On that note of responsibility, I want to toss out a challenge to each of you.

You see, I'll be getting a colonoscopy next Tuesday morning. We need to rule out the possibility of any new, unwanted growth in the region my most CT and PET scans have kept being reported as 'consistent with disease progression.' Dr. Lee wants to be sure. Dr. Grasso feels (literally, ahem!) the scar tissue is there and possibly still healing. Only eyes on the area of concern will give us answers.

That's where you come in. Metaphorically speaking!

I'd like to challenge you to take some personal responsibility for your health. If you haven't already, I reeeeally want you to get up to speed on your own family history of cancer or other chronic/hereditary disease. If you're a child, ask your parents. If you're a parent, make time to talk with your children.

As I've said before, the discussion doesn't have to be some dramatically urgent shoulders pushed up against a wall Hollywood movie moment. Just ping your loved ones and ask for some time in the near future to sit down in a quiet place and have a little chat. You need to know... they need to know... loving one another means gently broaching these tender subjects. The awkwardness can be defused with a little bit of a business approach and a lot of caring for each other.

And when you get informed, do something about it. Had I known I probably had an elevated risk for colo-rectal cancer, I would have gladly sought to be screened for Lynch Syndrome. That simple blood test may have sent me in for a colonoscopy or other exam/tests well before I developed symptoms or spent months thinking I was just eating poorly or needed to get into better shape. It could have headed off this entire process of the last seventeen months and kept me from dreading the next three.

Eh, I say dread, but I know I'll get through. I'll feel crummy and I will fail in several ways, but I'll do what I have to do.

But you can do something, now, and that's what I want to encourage. i want to save you from the consequences of putting things off, denying a problem, or ignoring an unpleasant possibility. The earlier you know, the better! No matter how uncomfortable it may be today, I guarantee it will be much worse tomorrow.

Lord willing, you are healthy or at least informed of what to look out for. With that, please consider helping someone else out. These are selfish days; times that need the restoring power of helping another person even if from a distance. I am very excited about the things the Stand Up To Cancer (SU2C) organization are doing. I know there are walks, runs, rides, etc for people to get involved in. Even the car guys out there can turn laps in BMW's for the Komen Foundation and help conquer breast cancer. All you need to do is look around for an opportunity... and then be brave enough to sign up.

Finally, though it does not feel like doing anything at all, you can pray. No, it doesn't feel like -doing- anything, but it puts your heart in motion. It is both the least effort and the most commitment to just quietly ask for the well-being of someone else. It may hurt. We think we get so much more out of putting our hands on something and fixing it, but the truth is there is so much more in putting our hearts into caring. Go for it!

there's no place like home... there's no place like home...

2009-01-07T13:41:00.004-05:00

Being married to Jody is rubbing off.

You see, she has this ability to absorb bad news and bounce back. I hate to be sharing this today, but we learned yesterday that I'm not out of the woods yet.

No one wanted to hear otherwise more than me. I held it together and was able to figure out the next steps. The facts are though, the metastatic disease just hasn't been done away with yet and I will have to go back on chemo in the next few weeks. We're going to go for another 3 month series but this time we will cross the Xeloda with Avastin to see if we can both kill and checkmate things out of my system.

It was tough to take and both Jody and I spent the better part of the day stunned, teary, and contemplative. The truth of the matter really is though, I'm still in the fight. I'd like to be out of it and I'm beyond ready to be done, but I'm not quitting. I know what to expect and though it doesn't please me, I'll push through.

Today, I had to take care of business at work. I got a curveball that helped firmly engage my brain and take my mind off of the inevitable that I'll be taking care of arranging today. When I got home I cautiously browsed the PET scan images on the CD Dr. Lee let me take home...

Instead of making me feel worse, I actually brightened up a bit. Don't get me wrong! It's kinda creepy looking at quasi-transparent images of yourself; especially when you not only know it's you but you can see it's your own body, right down to your own face! I looked for the four spots on my liver and the spot on my lung where the tracer shows lesions...

I could only find three, really. And that was with playing with the colors of the images. I'm not sure Dr. Lee knew how to use the little browser program that came on the CD because she showed us just black and white images and had a hard time stopping the animation. Maybe being a geek is helping me consume this stuff a little easier? I admit, seeing my scan images spinning and morphing like an old Peter Gabriel music video is kinda cool. Bonus points for spotting the Wizard of Oz reference. ;)

The report had comments about tracer showing up in my vocal cords, rectum, and still in my right lung. But I was in between two very sick weeks that required antibiotics that did nothing for my sore throat. I was also, um, fighting very loose bowels that morning. The analyst reported that I said I'd eaten nothing for fourteen hours though my metabolism was sparking off uptake all over that could have triggered false positives in the scan. The liver spots though, they're the biggest concerns... and they're not big enough to make surgery worth my while.

So yeah, though I didn't get the all clear yesterday there is a silver lining. There has been tremendous improvement over my initial diagnosis; the primary tumor is gone, CEA is now down to 2.8 from a high of 19, there is activity in the places noted ever since the beginning but it is on the run.

I have always been bigger than others and need more medicine when I get sick or a headache. When the bottle says "4-6 hours" that always meant 3-4 hours to me. Thus, I'm not surprised. I'm not thrilled, but I'm not surprised.

Before I get back on the poison, I will have to have another colonoscopy. This has always been on the horizon and is warranted now to rule out the tracer showing up down in the surgery site. As neato as the PET scan is, it is still high tech holistics. A 'scope will put eyes on the problem and allow for a biopsy to be taken of anything actually seen by a doctor.

I also need to have my port checked out. The last two flushes haven't gone very well and I'm worried it has closed up or otherwise quit functioning. It had been getting accessed every other week for a large portion of last year but, since July, it was just every month or so to be kept in good working order. The Avastin I'll go onto shortly goes in intravenously and, as always, I'd prefer not to needle my arm.

I also need to open a line to my new health insurance company, Aetna. I will dearly miss Denise at Kaiser, but I had little choice... Lockheed dropped Kaiser. But I picked up the Total Choice option with no referrals required, the exact same out of pocket premiums as the HMO, and $500 from the company to use toward the first $500 of any out of pocket expenses I do rack up. Not too shabby so far. I just want to make sure there is someone on my side as we try to finish this fight.

Happy New Year!

2009-01-01T11:54:00.002-05:00

I missed posting about Christmas because, well, I got sick again. Or still, depending upon your point of view. Bad enough that a day ahead of what we planned, I tried to visit a walk-in clinic up where my in-laws live and we wound up leaving a day early.

I was in a pretty bad way. It had been a week since I'd finished the antibiotic I'd hoped would be enough firepower to win the fight. I did get well enough to lay still for that PET scan you may be wondering about, but by Christmas Day, enemy forces had regrouped and taken me down.

This only dampened Christmas though. I came home with some excellent new fleeces and two new shirts, some fluffy/grippy socks, a healthy eating cookbook, a Thai curry cookbook, curries and rice to go with, a bunch of clever gifts from Germany courtesy of my traveling in-laws, and a very cool new pair of FRS/GRMS rechargeable walkie-talkies among lots of other gifts and sweets.

Back home I paid a second visit to my own doctor and got some horse-sized antibiotics for a second battle. This one is going well so far helped along by my Mom's Russian spiced tea.

I've receovered my strength enough to have muscled my big surprise Christmas gift down into the basement for a temporary setup. Do you know what pachinko is?

Ye of my longer associates know just what I'm talking about; the highly addictive Japanese gambling game. Imagine pinball stood upright, about as wide as your shoulders, with hundreds of small pinballs falling through a strategically placed playing field of brass nails. The nails dodge and direct the falling balls into and way from traps; some that open and close. Balls that are caught cause the machine to yield more balls in return... but those that are lost you don't get back. Hence the gambling aspect.

In Japan these machines are lined up in parlours in even the smallest towns. Players buy a set quantity of balls and risk them in the machines to win a variety of prizes ranging from plastic toys in the fun parlours to groceries in some pragmatic places and motorcycles or cars in high stakes casinos.

My oldest friends know I've found and fixed a handful of antique machines. They are fascinating to figure out as all the older ones really need is gravity to work. The falling balls do all the magic both in front of and behind the machines.

This new one though... it does need electricity.

But that's because it's a personalized Las Vegas casino! It has music and digital slot reels to make the caught balls even more hopeful as one plays. And it has lights. LOTS OF LIGHTS. And it happens to be Star Wars themed. (Think of a movie, rock band, Japanese cartoon, etc... there is probably a pachinko machine with that theme out there)

My Nerd Night friends punk'd my big time with this thing. They all chipped in to buy it and surprised me last week when I showed up for our regular Monday night out. I walked into the cantina and noticed it. I thought the restaurant had bought one to go with the video games, jukebox, and poker machines. I was completely shocked when they told me it was for me!

I've got some pictures to share later and a little video I found online... enjoy!
Better yet, come visit Jody and I to play it yourself!

Look at the video: http://www.youtube.com/watch?v=bnS19GVSvsE

NnuuunnnrrruuuRRrrrnnn,,,

2008-12-19T08:28:00.002-05:00

That's the sound I make to help clear my chest.

Or at least as close to what I think it might looked like if I could only type it out.

I got it honestly though and I wouldn't have missed it. Joanie was home this past weekend and I was able to spend the afternoon with her. She was pretty sure she'd picked something up on the plane. By evening we were both sniffly with a little sore throat starting. When I got home, all hell broke loose and my sinuses congested in what felt like minutes. By morning, I was very sick.

The dry house hasn't helped, nor has the room humidifier I bought in desperation. I've missed work every day this week. And I had to reschedule the PET scan I was supposed to have today.

I've got two days on antibiotics to go and I hope they're enough. My biggest worry is that my immune system isn't up to the task of finishing this off.

Note of irony: it was a cold and a dry cough that I couldn't shake that got me in to my doctor that led to the x-ray and the original scan that revealed the cancer. Go figure!

port problems

2008-12-02T16:29:00.002-05:00

Waaaay back when all this stuff first started picking up steam, Dr. Grasso signed me up to get a port. It would make IV chemotherapy much easier to administer saving me endless needle sticks in my arms. This sounded great back then because I have notoriously shy veins in my arms that have always been hard to find, much less hit.

It was supposed to be this great thing letting me get a needle in my chest (a lot less pain than you might think) and allow for both infusion of IV and medicine as well as blood draws. But then the insurance kicked in and for some truly stupid reason, blood draws and port accesses couldn't be done on the same day. Mind you the appliance makes both possible with just one visit... one needle... one insurance claim to pay. Nope, two visits for two procedures. And so Life went on. It still hurt less than getting stuck in my arm.

Until a few weeks ago that is. You see, the port needs to be accessed every four to six weeks whether it's being used for therapy or not. I'd been on Xeloda for so long, the only action my port was seeing was a routine access to flush it clean and keep it working. The last time it had been used in anger was for my reversal surgery way back in April. For my routine flush in at the end of October, things didn't go so well.

The needle went right in with only the skill Brenda has, but the saline flush did not give me the distinct scent of lemons I normally feel. It's a normal thing for me; I get this sensation of smelling lemons from the very back of my sinuses, forward. It's just how my brain processes the chemical signal of the flush and I've come to expect it. When things go wrong, I know it immediately.

Not only was there no lemony fresh scent, but there was a knot of pain and pressure, next to and above the port site. It happened again today. It feels as if the catheter tube from the port has been blocked and blown up like a balloon though I do not think it is that flexible. It hurts and it feels very very wrong.

So, Dr. Grasso got a call and a message to see about possibly bringing me in to see if the port is still in good shape. This almost definitely means a trip to the hospital where no one is as skilled at hitting the port as Brenda. It may also mean another outpatient surgery that I'd rather not go through except to get the port taken out.

And that may be a possibility too. If the PET scan on the 19th comes back looking good, chemo may be off the menu and I won't need the port. I already give regular blood samples for tests from my arms and hands so the port would be unnecessary. I'm getting ahead of myself but I admit it would be nice.

Meanwhile, any of you locals who know personal fitness trainers, drop me a line. I'd like to find someone whom can help me out while being careful in shaping up my abdominal muscles. Someone with experience training chemo patients would be awesome.

Best Gifts Ever

2008-11-26T22:30:00.002-05:00

It's that time of the year... and I really hate being asked for a gift list. ;)

If someone sees something they want me to have, I will appreciate it. Please don't ask me to tell you what to buy. To me that's just you saying you don't want to think of me more than you want to cross my name off of a list. It truly is the thought that counts to me.

Having said that, I've received gifts that have left their mark on me.

The first was a toy I still have after nearly thirty years gone by. My Dad was in the Air Force when I was growing up. We were coming back stateside from Japan just before Christmas in 1979. All of our stuff had been crated up and was taking a slow boat while we were living out of suitcases and holing up with my grandparents as Dad got out of the service. Mom and Dad had known our move home would interrupt Christmas and had planned ahead mailing toys home ahead of us... this was back when the mail could take weeks.

Under the tree that Christmas was the coolest toy ever; a remote controlled R2-D2! There was an American rc R2, but it only had two legs and was cloudy white plastic with a dull silver dome head; totally lame by comparison. My plucky little droid is -still- bright white with dark blue stickers and a mirror-chrome top. He's got -three- legs and his head swivels when he rolls around stopping on command and -shooting- tiddlywink discs! I still have him in his original box. A few years ago I had him appraised at $1400 for a Discovery Channel show but, to me, he's priceless because Mom and Dad had gone to so much trouble to make sure I had him for Christmas that year.

The second gift was a Snap-on 1/2" breaker and a tin can with some sockets in it. When I opened them, I did not understand what they were. Obviously they were tools, but they were clearly worn not to mention they were sizes I already had. Then my folks told me where they'd come from.

Officially, my grandfather died on my 21st birthday. He'd had a stroke several weeks prior and the family rushed to Florida from all corners, including my aunt who had been deployed to Riyahd during Desert Storm. Grampa had been looking us in the eye and able to blink yes and no but was otherwise completely disabled by the stroke... it was heartbreaking. My grandmother told him all their kids were there and she would be okay and when she told him he could stop fighting, he stopped responding to us. I feel that was when he passed despite the agony of the bureaucracy of stopping life support; which he'd been put on with complete disregard for the papers he had signed himself when he was originally admitted for a minor stroke. The major stroke happened in his hospital room.

My grandfathers' tools were supposed to have been split up and passed on to each of his grandsons; a fact I never knew. It had been hidden from me because my uncle had run completely roughshod over his parents home, his own mother's home, taking things before any of Grampas' wishes could be carried out. This heavily damaged my uncle's relationship with his sisters and, to this day, is still a tender subject. My uncle pawned nearly all of the tools I and my cousins were supposed to receive.

Somehow my aunt and her husband wound up with the breaker and the sockets I was holding in my hands. Years had gone by before they came across the tools in a stateside move of their own (Air Force too). They felt these few tools ought to go to me. As my mom told me who they'd belonged to, how they'd escaped the hands of my uncle, and that they were supposed to have been mine many many years ago, I broke down.

Those old sockets and the patina'd breaker bar now hold a very very special spot in my toolbox. They've turned fasteners on my and my friends cars now and made a few trips to different paddocks with me. I think of my grandfather every time I see them and I can feel he is happy knowing they're finally in my hands.

Here is a picture of an Artoo like mine. Give me some time and you may get to see those tools in use on one of your cars.

quick and painless... until the blood draw that is

2008-11-25T18:32:00.003-05:00

Dr. Lee was a bit late this morning, but I did not mind. I gave her a quick update and she agreed I would probably heal up more fully now without the chemo coursing through me being reinforced every other week. I'd had a rough weekend, worst night in about a month. I'm honestly a lot more worn than I want to admit, but I am feeling better. When I asked about getting into a fitness regimen, Dr. Lee saw no problem.

She deferred to Dr. Grasso specifically for any abdominal muscle training. I spoke with him this evening and he suggested I avoid overly stressing my abs and possibly invest in an ab belt for extra support. When I mentioned I may try finding a trainer whom has worked with recovering surgical patients, he thought that would be a good idea. So, that'll be the plan and hopefully my reduced hours will help. Dr. Grasso asked after my bimmer and told me he'd been in surgery today with another doctor working on a 2002. Car guy docs rule!

I'm in a minor holding pattern waiting for a referral for a PET scan on Dec 19th. I'm going to stay on top of this referral and not let it get goofed around with some typo or rejected for the wrong mailing address or, as luck would just have to have it, some inattention because of the holiday this week.

Which brings me to Thanksgiving. Like every year I have a lot to be thankful for if I just stop and think about it. Which is my encouragement to you. Take a little time out and consider your own situation. :)

off to the oncologist

2008-11-25T07:50:00.002-05:00

I'll be jumping in the shower shortly and off to see Dr. Lee first thing this morning. Chemo has come to an end so I anticipate we will be scheduling a PET scan to see how our work has paid off.

I'll also be asking her advice on exercising, specifically strength training. I've lost a lot of weight and, as you may have heard me say, I would like to capitalize on it. But I've lost a lot of strength too... and I didn't start off with a great deal. Now that there's no chemo going in, I want to know if it's okay to try building muscle even as the chemo tapers off.

Wish me luck!

breathe...

2008-11-19T15:42:00.002-05:00

For some reason, we instinctively hold our breath when something big approaches. It's second nature; a reaction to fear. I wish I had a dollar for every instructor who has told me to breathe or even for every time I've caught myself tensing up, forgetting to do what is guaranteed to keep my head clear and my actions smooth.

Just gotta breathe.

When I don't, I feel it. Often just a bit too late and I knock myself off my rhythm. I brake too soon, turn in too early, knot myself up and make it hurt worse, or psych myself into breaking down. Such was the case Saturday evening, and I've been paying for it since then. Less and less, thankfully, but I can still look back and see where holding my breath put me off my game.

This was supposed to be a good thing. Chemo ended Saturday evening. But I'd held my breath and turned it into this emotional mountain to climb that has upset me for days all because I didn't just swallow those last four pills instead of fixating on them.

So, lesson learned again. I never was the kid who really got it that the burner was hot the first time I touched it. I've always had to burn my hand a second time just to make sure. I need to just let the chemo go now and not get all worked up over my next meet with Dr. Lee. Yes, we'll talk about what happens next, but I do myself no favors trying to hold my breath until then.

okay now, THIS is cool

2008-11-12T15:23:00.002-05:00

Jody and I just had an impromptu video chat through Google and Meebo. With the teeny little webcam and microscopic microphones in my laptop she could see and hear me in real time! So this is that change Obama was all on about! ;)

Pshh... it's probably about time I got up to speed on video messaging. Jody got me a webcam for the desktop last Christmas but I never really put it to use. Who am I going to video chat with? Maybe webcams will appear in some other stockings this year... hehehehe

If you have one and you see me logged into Gmail, chat me up!

I am regrettably pleased to report I am well into my final week of chemo. I had to outline this fact to a few people at work today as Monday found me home, ill. With no more classes in the lab until February, Tuesday being a holiday, and no pressing needs I wallowed one more time (last time?) in the ick and stayed home. No sooner had I hung up the phone after letting my boss know, the phone rang again and there was a customer at the lab needing some machines set up...

I now know I'm going to be okay with the new job. Over the phone, I walked him through the setup and asked him to call me if anything did not work. I pictured each load taking a few minutes to finish and was pretty sure I'd stepped him through everything just right. 'Called him after about 15-20 minutes and all was right with that world. Yeah, I think I'll do just fine. ;)

doing okay, busy at work

2008-11-06T16:51:00.003-05:00

As requested, I am indeed doing okay and I am, happily, busy at work.

Unfortunately, I've also been busy at home too trying to make sense of a hiccup in my long-term disability insurance. To the point, eveything is straightened out but I am not getting what I thought I had purchased.

It was sad to cross over from short-term disability way back in February when the six month anniversary passed. The indignity of applying for social security benefits through a subcontracted nagging service was that much worse. They drilled me every few days over the phone and every week or so with paperwork but I just took it on as part of my new "job" of recovering and getting well and vowed to do my best. Fast forward through some rough times and I thought when I was finally well enough to go back to my day job, I would see more money coming into the bank account. What I didn't realize was the benefits would shrink relative to any money I earned.

Checks had been arriving for months now and the new number was predictable. I abided by my contract and reported my part-time earnings and the benefit check didn't change. I thought it might, but when it didn't I figured that was the other half of my paycheck; the other 20 hours a week my doctor has me resisting.

When September passed without a check, I didn't worry too much. By the time my birthday passed two weeks into October and I hadn't received a return call, I did begin to worry. After figuring out CIGNA had chosen to just stop paying for the flimsiest reason they could find, I went from worried to angry.

My case manager vanished. She may have quit or been fired, croaked dead or been abducted by aliens and forced onto a Elvis diet. She just plain disappeared. Her voicemail still works and her email has never bounced leaving me to think she was getting my pay/leave statements just like normal. But she wasn't and therefore CIGNA wasn't. After weeks with no check, I persevered through their ridiculous robo-phone system to get ahold of her boss who promptly denounced the break in communication as my fault giving them every right to stop paying benefits. Pardon my French, but this pissed me off. I wasn't the one whom had stopped talking, they were. To blame me and use it as an excuse to stop paying was just plain stupid.

You may be able to imagine my reaction. ;)

I bled them for information to get my account current but I was totally stunned to learn my adjusted benefit was more than a thousand dollars less. I could not figure out why. I know I can be thick sometimes, but a grand? For weeks I pored over their spreadsheets trying to make heads or tails of their math. I was certain they'd made a mistake because I piad for coverage to make up half my paycheck; half my gross paycheck! Every month I'd not been working, the benefit arrived fine. The month I started working, fine. The second month? Nothing. Got that straightened out and then the check was a fraction of what I was expecting. Feeling sick, routinely crashing, and being reminded of my age weren't helping either. In the end, I prayed for patience and understanding because I needed this to be over with so I could either adjust for the smaller amount, or get my account settled and back onto the check amounts I'd been expecting.

Now don't go thinking we're having budget problems. Far from it. Jody and I immediately scaled back the budget as soon as we found out I was sick because we did not know what this ordeal would cost. Mercifully, the out of pocket expenses haven't been that bad though I now understand the concept of those pre-tax flexible spending accounts. Taxes this year are going to be interesting... and that's without Obama. ;)

However, I cannot ever earn more than 100% of my old pay; what I earned when I got sick. Some months it will be smaller because I bring home weekly paychecks; twice a year there will be months with five while all the others will only be four. It was very bad timing that September was that first month for me coinciding with my old CIGNA rep going Houdini on me. I just didn't realize my coverage isn't actually for the other half of my paycheck if I'm able to work a little.

Honestly. What do people do who are too sick to keep up with these things?

None of this has really helped my stamina either. On the nights I can rest, I am able to wake up nice and early, have Aaron drive me to his school so he gets some drivers education time, punch in half a day in the lab trying to learn the new job, then collapse or completely crash at home. It's compounding the effects of the chemo with, thank God, ends after next week's final round of poison. Only 56 more pills to go starting Sunday... I think I'll cry when the last ones go down.

Please, oh please, let them have done their job. I don't look forward to the sore muscles after another PET scan or the prep for another colonoscopy, but they will be worth it if someone can tell me they don't see anything any more.

Okay maybe I'll cry now too. :(

vivendo discimus

2008-09-19T06:51:00.003-04:00

I don't want to write this post. Really. It's been better than a week since I actually realized I did not want to write this and it's been nagging me ever since. I'm ashamed of my reason and I'm afraid I will alienate some of my friends but it is my responsibility to say what I'm about to say no matter how afraid I am to do it.

This started off as a more convenient way for me to share what was happening to me. As I said then, managing multiple email chains would have been difficult at best and impossible when I got worse as expected. Now it's a bit of a sounding board and a punching bag for me to just get some things out. This has been needing to come out for a while now and, in struggling with the problem itself, I'm struggling to have tried keeping it to myself out of fear of disappointing anyone else.

Realistically, I am doing much better that just a few months ago. I'm still having troubles from time to time and they're still frightening me too easily into doubting I can do much at all. I'm fighting to do fun things like fly away for a racer/driver coaching seminar, or spend a day at the track, or even just muster up enough within me to enjoy dinner with friends or a movie with Jody. As anxious as I am to get back to meaningful work, I am scared about what next Monday brings me in terms of balancing my ability to be effective with the need to spend more time than others in the bathroom. It's embarrassing and it crushes my spirit at times.

Which leads me to my knees, sometimes literally but most times in just a quiet desperation. I'm worn out. I don't know how much more I have left to wear away. I feel like the brakes on my car; able to get by but not without a bit of noise near the end squealing a little louder for attention.

And the trouble there is, the reason I am afraid to have said more to anyone other than Jody or my family, I'm not feeling like this is doing anyone any good. I clearly remember praying and, though scared, acknowledging my faith that God wouldn't have allowed me to be thrown anything I could not handle. I prayed that my faith would increase because the challenge certainly would. Through radiation and chemo and surgery and chemo and surgery again I felt buoyed.

And then chemo started again and the second round destroyed me. My hope drained away faster than ever. All that while, little Brie lay in the hospital and I could not visit her because I had poison escaping through my skin. I prayed she would be okay and was thankful for all of the miracles that seemed to have put her in the absolute best hands she couldn't have possibly planned or even paid to be more right. And my hope was obliterated when she died. Though I've been coping with that and am still finding acceptance, there has been an insidious want inside me that has aggravated the anger I have over my own disease and made me arrogantly call it a need.

It's been a desire, a temptation really, to want to know why. Why has this happened to me? At the beginning I had a real sensation that this was a test of my faith and being around others and sharing through the blog would be a way God would show Himself to others. And that gave me hope at the time. A year later I'm tearing myself apart wanting my part in the decision of whether or not all of this, me suffering with cancer and life afterward, is worth it... worth going through if it's just to be an example to others.

I'm just starting to scratch the surface of that and this post, as much as I'm afraid to make it, is what I think has to come. You see, I'm not perfect. My faith and what I believe do not make me any better nor worse than anyone else. They do not protect me from disease or hard times and do not make Life all teddy bears and rainbows. And just as Life can be tough for me, Life is also tough for everyone else. Which brings me to one fo the requirements of being a faithful person... this... relating to other people and sharing my experience... even when it's been hard and I feel like I'm failing to be a good example of how a believer faces rough times in Life.

I was reading a thread on a message board in a discussion of whether or not Creationism or Intelligent Design, the belief that the universe was created by God, should or should not be taught in public schools. The argument was familiar; that evolution was the only scientifically provable angle and should be the only curriculum taught to today's children as opposed to an unproven fairy tale of sorts.

I added my own personal take on the debate by saying this, "Personally, I revere science, the scientific method, and curiosity as a motivation for greater knowledge and understanding. I also happen to believe this quality was a gift from God. My faith is reinforced every time the tiniest new discovery is made. There is no scientific fact that will shake my faith. There is no scripture that can deny me the wonder, the enjoyment of discovery. I've got cancer. If there is an experience in life that could destroy my faith or express my disappointment in science, this is it."

For the record, it was in an off-topic forum of one of the BMW boards I read. ;)

What has shaken my faith though is this overwhelming wish to know why this has happened. I'm starting to realize that I may have gotten it right at the beginning and it's happened because it's supposed to speak to someone around me. What is it supposed to say? I'm not entirely sure, but I think part of it may be simply to demonstrate that a faithful man is not free of anything good or bad in Life. I think it may also be saying belief is not some easy choice for the lazy or the unintelligent man.

And the more I think about that, the more I'm okay with it because helping other people is something I think we all feel good about. I know it satisfies me even if I've been a little too anxious to get back to work; the last place I really felt I was being helpful. So while I'm afraid to admit I'm struggling in my faith, I will anyway because it may be helping you.

And to me, that is worth it.

vivendo discimus - by living, we learn

ch..ch..ch..changes

2008-09-10T09:15:00.003-04:00

I've had a bit of a rocky few days and I wanted to make some changes. Obviously the blog template changed, but I've got a post brewing that I'm both anxious and hesitant to put up here. God and I have been butting heads and I need to get some things out. For all I know, it's one of you that needs this more than me, but I'm going to do my part.

Meanwhile, I've added a new little picture over to the side linked to the Stand Up to Cancer movement. I missed the television program last Friday, but I'm going to try to find it online. I don't know much about the effort, but given the name I'm eager to find out more. Please click through and check it out for yourself. Because you know me, cancer has touched your life now. Sorry 'bout that... ;)

and home again

2008-09-09T07:39:00.002-04:00

I made it home from Durham without melting in the rain. The seminar was a fantastic experience and though I've still got butterflies when thinking about instructing, I now have a tone of ideas, techniques, and advice to draw from when I finally make that jump. Day two was just as good and sent me home with a list of bullets to apply to my own driving once I make it back to the track.

The flights home were uneventful except for another twinge in my abs (same one) that I'd otherwise been able to avoid all weekend. I tried reaching back over my head to raise the headrest of the airplane seat and -zing-. That set off a wave of anxiety and I must have looked like a ghost. I think I saw myself turn white. It didn't help that I was dog tired... or maybe it did. I got home around midnight and just crashed. I'm still glad I went instead of chickening out.

Hopefully this week will find me reunited with my badge and back to work work (as opposed to empty cube "work"). I was still pretty tired when I awoke yesterday morning so I logged into my email from home to see if the badge process had finished. Nope, not yet, so the decision to take a floating holiday was pretty easy. My boss warned me that I have to use them up before the end of the year. ;)

Jody telecommuted too and around mid-afternoon we both wanted to get out and do something. How about a movie? "I'd like to see Mamma Mia!" "Okay, I guess..." I enjoyed it after all and now I have ABA stuck in my head. I will burn a CD this morning and pop it into the car today so it's not a bad thing. :)

How to test your faith

2008-09-06T06:48:00.003-04:00

This is a weather.com image of the Raleigh/Durham area right now:

Yeah, that's the eye of hurricane Hanna just east of Fayetteville.

Why Raleigh/Durham? Well, that's where I'm at right now, posting from my laptop in the very nice Sheraton Imperial. I'm here for a driver coaching seminar being given by Ross Bentley, author of the Speed Secrets books.

So yeah, I've flown away from home, into a hurricane, by myself, just shy of two weeks after being in the hospital, anxious as all get out about these weird sharp muscle pains under my right arm (ribs) and below my belt. I know they're muscle pains because they only hurt if I'm reaching or stabilizing myself... so I'm moving kinda carefully as I go. And praying constantly.

God got me through the anxiety of getting on the plane and got me here just as the storm arrived. He blessed me with an easy checkin and some very good rest before treating me to a visit with wonderful friends, the Valentines, whom moved here earlier this year. We had a great dinner at Ole Time Barbecue that Brett had seen on Road Tasted with the Neelys on the Food Network channel. It was excellent. :d

Good nights' sleep capped off the big day and now I'm up getting ready to go learn how to teach drivers to drive fast. Oh, and safe too. :D

I am very thankful for the smooth sailing so far and I know I'll be okay going home... even through the tail end of a hurricane.

potentially big day tomorrow...

2008-09-01T17:28:00.003-04:00

Hello again. I've been sitting on something that I've been trying not to get too excited about. I've had a handful of setback days still trying to get back to okay to help keep my mind off of it.

Last Tuesday, as I was waiting to see Dr. Grasso actually, I got a call from a fellow at Lockheed about a contract we'd recently won that is being staffed even as I type. I couldn't find anything about it earlier so it came as a bit of a surpise when I found out where it was. Take a guess?

If you guessed right back where I had been working, you'd be close. I've not been given all of the details yet (administrivia) but what it sounds like is going to be really really cool. I may find out more tomorrow as the wheels of bureaucracy continue to turn and I get closer to my old, normal status.

What I do know is it will be within my old customer's spaces at a rung or two higher on the ladder of development, test, and delivery that I used to work. I'll be back in that environment again which has me absolutely thrilled. Ever since it looked like I wouldn't be going back to my old task, I've been praying that whatever it is I should be doing be made nice and clear. I've been a bit thickheaded with this opportunity, but it does seem clear that's where I should be.

I was doubtful, and my bad days didn't help, but the customer is aware of my work limitations and wants me anyway. In fact, they want me as soon as possible so that I can overlap with the incumbent whom is leaving at the beginning of October. I do not know the situation there but that has also conspired to worry me; in the past it's always been me headed for the door having to train my replacement several times. But I'm going to put one foot in front of the other and believe it's where I ought to go. Hopefully, I will learn more tomorrow.

Meanwhile, I am a little nervous about the weekend approaching. I want to stay healthy this week and enjoy a driver coaching seminar down south in Durham, NC. The speaker is a fellow whose books I've read at the encouragement of some of my driving instructors. Before I got sidelined, I was being asked if I'd consider teaching and I secretly cringed. I'm not sure I'm skilled enough to teach someone else... I wouldn't know where to start. Well this is where I'm starting by learning how to teach another driver. I am looking forward to the experience and hope to catch up with some old friends at the same time.

Can a guy get a break? -or- Here, have some bacteria!

2008-08-26T09:13:00.004-04:00

I just lost five good days.

They were stolen from me, actually, but I'm not getting them back. Today isn't looking like a winner, but it is better.

I mentioned I took a trip to the emergency room in my last post. Welp, it happened again Wednesday afternoon last week and I got an extended stay in the hospital for my trouble. I had the prior experience going for me as I struggled to drive home and call for help. It was back to the ER where I writhed and just hoped the pain would pass just like Monday. I wound up being admitted for a possible bowel obstruction and the possibility of surgery. And yeah, it's making me cry just remembering that. :'(

I cried and prayed and just begged that no new serious thing would block us on the path out of this nightmare.

I got a very rough IV and started taking on fluids. The ER had given me a laundry list of painkillers that managed to get me through a "dry" CT scan that showed only the possibility of an obstruction or maybe twisting of the large bowel. By then the pain had started to move to my left side and I was sure it was not my stomach (or my appendix... that crossed my mind very early on).

I'll get to add to my list of painkillers not to give me as whatever they pumped me up with got my stomach in knots and kicked over the vomit machine.

Let me pause here and say something about the hospital bed. They kill me. Slowly and thoroughly. I now have a darkly humorous understanding of the expression, "laying on his death bed." The gem I was given had some system of air chambers underneath that would inflate and deflate if I dared to move. I never quite figured out its method, but I was told it was to prevent bed soreness. As a user, let me be the first to say IT DOES NOT WORK. The Bionic Woman can hawk those SleepNumber beds all day, but I'll never buy one again. Be on the lookout if you end up in the hospital! (Unless they're giving you bionic legs or something cool. That might be worth it.)

Obviously the vomitting had to be mitigated so what faster way to empty my stomach that with... another tube! Yay. I literally cried in terror and half hyperventilated myself unconscious. I begged that my stomach was already empty but I had no choice in the matter. At least this time I knew what to do and I spent every microsecond praying that it would go down easy.

It was easier than the first tubes I had way back when but that's not saying a lot. When nothing came up, only an x-ray would satisfy. No amount of me pleading that I was empty could convince the nurses. At least the x-ray guy came to me.

Since the dry CT hadn't been definitive, I had to get a contrast CT. Normally you'd drink the liquid and fill yourself up with stuff that the machine can see real well as it floats through you. Mine went down the tube; a consolation prize for not having to drink the stuff that tastes like El Cheapo white-label brand lemonade without enough sugar. Why they couldn't do this downstairs in the radiology department I do not know, so I got to enjoy the Mad Hatter's spinning teacups ride with a tummy full of yuck.

What goes in must come out and the vomit machine started once again. FINALLY the nurses listened to me and gave me painkiller that wouldn't make me barf. For my last ride, I was sitting half Indian-style in the bed when the wretching probably caused a hernia (of sorts... grrrr) that I will be trying to have addressed today.

With the "possible" hernia came a whole new set of consultations with urologists. I'm sorry, but what part of "this is all swelled up, it hurts like someone pulling on me, and I can feel stuff that shouldn't be there" does not translate into hernia? "Well, it's probably not small bowel and that's what I call a hernia."

I wanted to punch that knuckledhead.

I got the all ladies version of the Three Stooges in the imaging department. I'm not joking. The one urologist lady walks in while the technician lady has her magic wand on my friends "down there." Another one walks in and says, and I'm quoting directly here, "Oooh, this is the one I wanted to check out!" I guess it has been beneficial to have lost my modesty because I'd have otherwise been scarred for life.

Yes, it's a hernia, "of sorts" they said but it's not as bad as a bowel intrusion. I now understand why some hernias hurt like crazy and others are just uncomfortable. Regardless, I really don't want anyone but Dr. Grasso messing with my guts if surgery has to be done. I did manage to convince the weekday doctor to CALL him which the weekend doctor confirmed for me.

Oh yeah, you came in here with a possible bowel obstruction...

When the CT scans turned up no blockage and no clear evidence of a twist, someone dug just a little deeper and learned that chemo patients are prone to bacterial infections. (gasp!) So, let's try you on some antibiotics and see what that does.

Bing! I cleared up pretty quickly while I was on it, but when I got home, literally less than a day later, I was sick as a dog again. So, while trying to get all my doctors caught up on what has happened, figuring out if I should resume my chemo (round three should have started Sunday), coping with a hernia "of sorts", and being bummer that this all happened on just my second week back to work, I got scripted some more of the antibiotics I'd been given in the hospital. Yes, if you're reading closely, they discharged me without any prescriptions to finish off any infection. Hopefully there will be no more vomiting today now with the antibiotics back in play.

Jody doesn't want to go back there again. Not to the hospital, but not to that hospital. And I have to agree it was a less than wonderful stay. If it wasn't the guy sharing my room and his relatives who spoke only Spanish, loudly, it was the guy sharing my room and -his- relatives who spoke only Chinese. Loudly. And that guy snored like a train at all hours. I wish I could fall asleep that fast. And doctors just do not visit patients like you see on television.

But Tara visited me twice and Dad's friend, Terry, did as well. Naturally Jody and my parents kept me company too. I got a surprise visit in the middle of the night from Tara Ross, a nurse I'd met at a Superbowl party last year. She'd heard through her and Jody's mutual friend, Sue, that I'd been checked in and spent a nice long time with me on her break in the middle of the night. So, the lonely times weren't so much and the waiting times went by as fast as they could. Thanks to all of you. :)

Now it's off to try and get some food to stay in me today. We'll also see if I should get back onto the chemo and if the hernia is a real problem or something I can live with.

A year ago I was saying how much I wished this was over. I'd give anything just to be myself again.

back to the grindstone

2008-08-19T17:28:00.003-04:00

I did resume the position last Monday. I did not wear a pink shirt, but I did wear some of the khakis and oxfords I've had hanging in the closet now that they fit me once again!

A thought occurred to me a few weeks ago when I was threading on my favorite belt; the one I got in Camden Lock in London when Jody and I first vacationed there when we were dating. I am thinner than when I first met her. I vibrantly remember talking with David Bristow, the leather crafter, as he measured my waist and sized my belt to let me gain or lose some weight. I'm on the last hole he put in the belt for me. :)

I had a bit of a scare before I did start back. Wednesday and Thursday were sketchy as I'd probably eaten something I shouldn't have. Friday it was the other end as I'm pretty sure the yogurt I had with breakfast, though fully fresh and very yummy, did not sit well all day. My pink friends helped.

I also had a fright last night as I reluctantly had Jody take me to the ER. I'd had me regular Monday dinner with some of my oldest friends and come home ready for bed. I was dozing and Jody was reading when I was literally sat up in bed by a very sudden and very sharp pain... right in mah belly! [/very bad Mike Meyers/Austin Powers voice]

Though I would be proven wrong later, it was very very different from my usual gas pains from eats I've learned to avoid. I was doubled over within minutes and nothing I did was making things better. Jody very deftly rushed me to the hospital with smooth speed and maybe a few pictures from some red light cameras. If she gets pinched, I will testify on her behalf I thought I was in serious trouble.

The pain subsided with some choice, um, expressions of my gas-itutude and thanks to the nurses and technicians in the ER. With some fluids, I was able to lay flat again in about an hour and a half but I tell you now, I was seriously hurting beforehand.

I called in this morning to relay my story and ask to come in late and was told to just stay home and rest. It's not like I'm missing anything urgent right now. When I reported in last Monday, I was given a desk on a ghost-town of an office. A football field's worth of cubicles and a whopping three people amongst them; myself included. We're a rag-tag bunch with me just getting back into the swing and two other fellows looking for work between assignments. I checked email, got my voicemail restored, returned a voicemail from a month ago, reformatted my resume, got my retirement elections back on course, and surfed the company network for job listings. It's like when I first started with Lockeed so I imagine I'll be tapped to do some backfill work here and there for a while and then be off on another glamorous, action-packed adventure.

Back home I've been chipping away at the net finding old episodes of Top Gear and Fifth Gear. I found a cool fleet vehicle service company whom was able to steam slean the engine and transmission on the bimmer so I can plot my assault on the timing belt and water pump in the coming days. Knock on wood, the Xeloda pills haven't hit me very hard except for possibly being the cause of my trip to the ER. But that I think may have been a bad combo of the chemo starting to accumulate and poor timing of slight dehydration and maybe a bad choice for lunch or dinner yesterday. I may have crossed a threshold with the stuff and might need to get the Tagamet pills back into my daily snack pack. When dry toast makes you belch, you may have a little stomach acid trouble. ;)

Speaking of lunch yesterday, I got to enjoy it with Jody as we celebrated her passing the Project Management Institute's Project Manager Professional exam! She's certified now!

To close on an upbeat note, I ran across a net web game/toy you should try.
Check out Fantastic Contraption!

Pink things

2008-08-09T07:34:00.002-04:00

Last night Jody and I watched the stunning spectacular of the Beijing opening ceremonies of the '08 Summer Olympics. If you missed it, stop. Do not pass Go and do not collect $200 until you've made an effort to find some video of the production. It was unbelievable.

And it came to me courtesy of some little pink friends. One was Pepto Bismol's new antacid pills that helped me finally come down off of something bad I had for breakfast yesterday. Dunno what it was though I strongly suspect the yogurt though it tasted perfectly yummy... so did my bowl of Cheerios. Go figure.

This was after a very loooong day before finally relieved by this pink cream called Calmoseptine. I'm not kidding; this stuff is magic. Come to think of it, it was two very looong days. It's bad when something hurts so much that you can't remember time.

My little chemo pills are also pink and that first week wasn't all that bad. I was expecting a lot worse, but it didn't really hit me. I had more difficulty psyching myself up to take them the first few days than they actually affected me.

These little pink aides are helping me avoid a pink slip that would otherwise be coming my way at the end of the month.

I'd thought three more months of chemo were going to seal my fate and keep me from going back to work. Dr. Lee suggested I give the pills a try and see how they affect me. I agreed, mostly out of desperation, but was pleasantly surprised. I'm not being stupid though and I've acknowledged there will likely be a cumulative effect, but that is okay with Lockheed and they're welcoming me back part-time on Monday morning. :)

Personally, I think getting back to work and feeling useful again will have their own benefits. I may wear a pink shirt on Monday.

Maybe not. ;)

Sunday! Sunday! SUNDAY!!! er... WEDNESDAY!

2008-07-23T17:02:00.003-04:00

Just five dollars gets you the whole seat but you'll only need the eeeeedge!

I was a little anxious yesterday afternoon heading for Dr. Lee's office. Was the CT scan good enough? Should I be expecting a fight with Kaiser over getting a PET scan? It's been five weeks... am I going back on chemo? Can I go back to work?

Yes, these questions and more were all answered on this week's episode of As Sco's World Turns.

In order, yes the CT scan was good enough. The report was a whopping two pages instead of two paragraphs and had many good things to say. There was nothing to see in the lymph nodes of my chest. The diseased spots in my right lung had shrunken more still compared to April and August of last year. The spot on my liver had also diminished down to less than an eighth of an inch in diameter; even smaller than when Dr. Grasso spied it when I had surgery. He said then that it was too small to go after then, even while I was already konked out. My spleen is enlarged, but that is most likely due to the chemo making things hard on my immune system and it is (was) pumped up now that the chemo has been off for a while. There is also a good deal of inflammation in the soft tissue 'down there' which is only a worry if I'd not been through radiation.

No, Dr. Lee does not need me to suit up for battle with Kaiser. She was a little sly when she said she would save her admonition for the denial for another time. There is something to be said for being owed one when someone goofs something up for you. ;)

Yes, I am going back on chemo.

Yeah, I needed a moment to let that sink in too. I tried to bargain right away because it's going to be the Xeloda again (pills) instead of a drip. I'm trying to keep an open mind here and hoping the side effects will be similar to last year's experience but without the sunburn from the inside. I'm going to need more willpower this time. Dr. Lee made it plain though that we need to do this and it needs to be for a few months to make sure all of the work I've done so far is not wasted by cutting things off too early. That would suck. Big time. I need to remember that to avoid the temptation of 'forgetting' to take the stuff.

Yeesh. You'd think a day to accept the news would be enough. :\

Can I go back to work? Sure. But Dr. Lee cautioned me to give the Xeloda a try and judge how the full dose hits me (the does I took last year was only 50% because I was getting microwaved at the same time). I agreed that would probably be a good idea and I shared that with my section manager at work today. Meanwhile, Dr. Lee is ready to write me anything I need to rejoin the wage-earning population. Just plain interacting with people again is going to make me feel good. :)

what a tangled web we type

2008-07-16T07:18:00.003-04:00

Sure enough, I got my little five page letter from Kaiser explaining to me why they turned down the procedure my doctor had not requested. Right there in black and white they spelled out that I don't need a full body PET scan, not the thoracic scan we're trying to get. On the one hand, they got it right. If we'd asked for a full body scan, it shouldn't be approved because it's not needed. But on the other hand, they should have corrected the typo when Dr. Lee called in to explain that what was denied was not what she'd requested. Literally, someone goofed and checked the wrong box.

But no. The reviewing physician at Kaiser (whose name, address, and phone number are in the denial letter!) apparently understood Dr. Lee's request and that a clerical error had been made but still turned down the procedure... the correct procedure.

Que?

Denise's advice is to go ahead and start the appeal process. I'm not quite sure how I'm going to convince the Kaiser doctor if he has already heard Dr. Lee and still said no. But I'll try, I guess. At the minimum, the CT scan I just had done will probably come back inconclusive giving Dr. Lee another reason to ask for a PET scan. A thoracic PET scan. My very first CT scan was not revealing and that was while the tumor and mets were untreated. Seriously, Kaiser... duh, much?

So I'll do that today. And I'll ping Dr. Lee to see if she'll write me a letter for Lockheed to take me back on the payroll. And I'll call some tree guys after my county environmental guy visited on Monday. And I'll take a whack at cutting the grass; slowly so I don't keel over. And I'll whittle off some lighting fixes for the house. And when it gets hot, I'll retreat to the air conditioning and fight with Mom's dying laptop to rescue her pictures. And I'll have to work in a trip today to make sure we have dog food. Ahhh... tedium... ;)

biding my time

2008-07-13T22:01:00.002-04:00

Tomorrow morning (Monday) I'll be headed in for a CT scan. Fun. Two hours of lounging in a darkened room sipping day old strawberry milkshake. That's what the barium contrast stuff tastes like. I've learned to drink it without thinking about how gross it tastes. ;P

You may be asking why a CT scan and not a PET scan? Or maybe not. Well, thanks to a clerical error and some apparently paperwork shy doctors at Kaiser, the referral for a PET scan was turned down. The Kasier person who received the original request put it in wrong as if Dr. Lee had sent in a full body scan request; which I do not need and should have been turned down if that was really what had been requested. But we asked for a thoracic scan, just like the first two. Dr. Lee called in last Friday to correct the error and still got turned down.

Now, this is something I need to have done. Dr. Lee needs to see the same kind of scan as the first two to judge how well the chemo has done. Apples and apples, ya know?

So, while I wait tomorrow morning, I will call Denise (my case manager) and ask her if we can't get this approved somehow. I won't be surprised if she agrees with her standin (Denise was on vacation last week) and tells me it may be easier to have Dr. Lee call in another one but to make sure it is received correctly.

No biggie though it's not like I need any extra crap in my life right now.

I'm trying not to get my hopes up, but I may get an assignment to work in a few weeks. I don't have many specifics but one of my strengths has always been an ability to adapt to new jobs.

The Accidental Astronaut

2008-06-28T05:56:00.003-04:00

Pun fully intended above.

Yesterday was a milestone; one I didn't think I would reach for a bit nor was I fully prepared for it. I'm off chemo.

Well sort of, so before you start whooping it up there is a catch. Lemme rewind...

It had been a few weeks since I'd met with Dr. Lee and we'd last talked about possibly switching me to oral chemo (my old friend Xeloda) to finish things off. I'd made noise then about the neuropathy and how my fingertips were numbing and both my feet were constantly freezing numb. We agreed to go two more rounds. Round nine was on when Brie passed and only Grace carried me through that without days of ill effect. Round ten was last week and pounded me harder than ever before. Compounding that was Jody needed to be away for the week for training so I was on my own with the dogs to care for. I was sick for five days straight until Thursday this week I finally got some relief.

Of course, that was the day Dad was scheduled to go in for his dialysis catherter surgery which had been worrying me all week too. I can put on a good show for "routine" surgeries but it doesn't mean I'm not still worried. Thankfully Dad's procedure went just fine and, though he's got some expected abdominal pain, he was able to get up and down under his own steam that afternoon. I'm hoping to visit he and Mom today now that Jody is home too.

Thursday evening I was glad I'd been able to go with Mom to the hospital and I was feeling much better than I had all week. The boys had been very depressed all week with no Jody around so I asked them if they wanted to go for a drive. They perked up at that as did I and we went out for an easy loop around 108 down to 32 and back up 95 to home. I noticed Bailey still nursing and licking at one of his feet when we got back and found it was bleeding. (Yes, there are bloodstains in my car now too.)

It was too late for the regular vet so I called the overnight place. The nurse there encouraged me to keep an eye on him and bring him in if it got worse. The bleeding had largely stopped and Bailey was curled up asleep by the time I got off the phone. In the morning, I made an appointment to have him checked out... the poor guy keeps hurting both of his hind feet but this was the first time anything had bled.

But that had to be after I'd visit Dr. Lee again...

I came in with only two items on my agenda; I needed two more packets of the lovely anti-nausea pills that go with each chemo drip and can we PLEASE talk about stopping the oxiliplatin because my fingers and feet are now blocks of ice.

She asked me how things were going and I relayed my bullets to her. She asked if the anxiety was still there and I had to admit it was but the little ativan pills helped and I planned on taking one next week to help psych me up for round eleven. All of this must have tipped the scales because she suggested enough had been enough... but...

She began to tell me about a drug called Avastin that I'd be switching too along with Xeloda to polish off the full chemotherapy treatment. I've already been getting Avastin as part of my cocktail; it is the piece that interrupts the signaling of cancer cells to blood vessel cells to make new blood vessels. We'll finish off the poison that kills the cancer cells (and others) and stop the little knives from flying around bursting capilaries that slows new cell growth, but we have to keep any living cells left from growing.

This started computing in my brain and I asked the obvious question of how long this would last. I dod not remember learning about any sort of maintenance therapy only monitoring and possibly needing more attention once this was all over with. Getting to "over with" has become one of the last few things I've been trying to reach... and all this sounded like was MORE.

I held it together until I left and had a good cry in the car. Jody was in class, Mom was home caring for Dad, Bailey was hurt and needed me to get him to the vet, and I had already postponed visiting with Alex because of Bailey. I felt like I'd been just barely climbing mountains and now I had to fly to the Moon. I just prayed.

I got some peace and a little perspective in response and I was thankful. Yes I'll still be going in for regular drips every other week but I won't be taking home that annoying little pump overnight. (I can still hear that thing and it makes me feel sick.) This Avastin stuff does have some side effects but nothing like the sapping sickness of the IV chemo, flourouroouroro-whatzit. I get a month off before we start this phase and there will be a third PET/CT scan in there to see how things have changed since the reversal surgery. This may, for all practical reasons, mean my last batch of really sick days just passed me by.

And yeah, that brings tears to my eyes but this morning they are happy ones. :')

What a week...

2008-06-11T10:28:00.008-04:00

I tried writing Wednesday morning because I needed an outlet. I wound up saving the draft and not posting and I'm glad I did.

I was angry.

Oh yeah was I angry. A friend had died in, what I felt, was the most unfair and cruel circumstance. I'd railed and cried and wished it could have been me instead. I've had a good life so far and hers had hardly started. I was more angry over this than I was at any of the low points I've found myself trying to get through colon cancer. It simply wasn't fair or right and if I believe God made me in His image then my sense of fairness and rightness must have come from Him, right?

THIS DID NOT ADD UP. And it was making me furious.

That draft post was full of it. I admit it now because, honestly, it's the right thing to do. I am no saint and the truth, the whole truth, ought to be out there for you guys to see. Yes, I believe, but that does not make me more than human.

I was dreading the memorial service Wednesday afternoon. When I went in last Friday to return the chemo pump, I half begged Dr. Lee to prescribe me something for anxiety; she gave me ativan. It had worked so well at calming me down with the last two of those towering chemo drips that something at home would really be nice, especially with such heartbreaking news to have received the day before. But it felt like cheating; to have a little pill that would just chill me out instead of suffer all the hurt I was feeling for Brie. I haven't taken one again since the first one.

I downloaded a carefully metered amount of this on Jody. She lovingly reminded me that yeah, we have faith in God's plan but that He's not the only force at work. I grabbed onto that and reiterated my deepest hope that on some level Brie's doctors were able to learn something that would help save another person. Until then, it was the only good thing I could even remotely find about this whole mess.

We were going early to allow Jody time to help with the flower arrangements she'd volunteered to captain. That left me with time to call my Dad and talk a little. Brie's brother Alex found me too and he was doing alright. I told him he was welcome to visit when he felt up for it and that I'd bought the Lego Indiana Jones game that we could play two-player.

Even from a distance, Holly had made it very clear she wanted the service to be a celebration of Brie's life. Given my emotional state at the time I was struggling with this. The service was overwhelming and there were some moments that really touched me.

Where I had been so amazed at the miracle of Brie being put into the hands of specialists both in Ireland and here at home, it was one of the nurses at Hopkins Childrens Center who may have been the real miracle. You see, not only was she a nurse at the hospital but she was also a member of their church and had been Brie's Bible study leader just a few months before. A friend and a caregiver and a mentor, right there for her. It was this young lady whom reminded all us that Brie had framed out peace and love as the most important things to her.

Alex had written a little about his sister but it was the story his pastor shared about a walk they'd been on a few days earlier that struck me. The pastor admitted he stumbled into the question that, at times like these, really doesn't have an answer. He said he'd asked Alex, "Are you okay?" He said Alex paused at this and answered honestly that no, he wasn't. Not yet anyway, but Brie was and that would help him be okay soon.

Why I couldn't see this for myself became clear just a bit later.

As the service concluded, the pastor told us another story of how Brie had picked a verse from her Bible with her Dad and had pinned it to the wall in her hospital room. It was 2 Corinthians 5:7 which reads, "For we walk by faith and not by sight."

Like a curtain being pulled back I realized that's been my problem most lately. It's also the reason I needed to write this and be honest with you who may be reading. I've not been walking by my faith lately. I've been right back to handling all of this stuff on my own and praying only when it hurt instead of when I was fine... which I'd complacently chalked up to my own good work. Being human can bite you in the butt sometimes. No pun intended.

The pastor concluded by affirming just as Holly had made plain that Brie would not want to be mourned in sorrow. Paraphrasing, she would have told us that she wanted to be missed a little but that we should also make peace and love important in our lives.

Both Brie and Alex have been such wonderful examples to me. Though I am still sad, I am not angry any more. I know again I need to really walk by my faith. And I know that Brie is okay now and that will help me be okay too.

please pray for Holly, Alex, and Mark

2008-06-05T06:03:00.004-04:00

I have to post a very sad update. Brie has passed away. I do not know the details and right now my only hope is that she was not in any pain. Those hurting most are her parents, Holly and Mark, and her brother, Alex. Please pray for them.

[old post]
I've posted before that she'd fallen ill on a vacation to Ireland and was found to have contracted an acute onset of apalastic anemia; in short, her bone marrow has ceased producing blood cells of all types. Most recently, she has been so unstable that she had to be isolated in the pediatric intensive care unit at Johns Hopkins Childrens Center fighting not only a short balance of white cells, but doing so against a reported three different types of bacteria floating rampant through her little 12 year old self... oh, and running at 100-degree plus fever. For a while, she was not able to breathe unassisted though it sounds today as that has been mitigated. I've heard she was awake last night and asking for Holly, her mom.

Holly needs our most sincere prayers as well. She's been painted into a corner rather quickly with Brie being sick, not being able to work regular hours, and trying to maintain some sanity in Alex's life; Brie's twin brother. I worry for both of them so much so that I cry wanting to do more but being half dead myself. It's crushing me that I can't go to visit her in the state I'm in. I can forget the pain, but I can't change the fact that every pore in my skin is bubbling with residual chemo that could seriously complicate matters for anyone around me whom is sick. If only Brie were at least on a path through and out of this mess, we could all breathe just a little easier and coping with the day to day stuff wouldn't be so bad.

Holly's parents are en route and I've heard Alex has been able or will soon be able to visit too. What Brie needs most is healing. It's what we all need, really. So please, please lift Brie up today and pray for her today.

taking back the blog

2008-06-02T07:39:00.002-04:00

I made an honest mistake. I thought it would be helpful to someone else out there who may be dealing with this same cancer to see what I've been through. When the invitation came to join a blogger community that could be searched, I thought I'd join and get a little exposure; maybe help someone out. That's me.

But VerveEarth took over and I lost the ability to post. Until this gets fixed, I won't be using the service. One lengthy post at a particularly low point on my trek got lost and isn't even showing up as posted or draft saved anywhere. :(

People have emailed and asked in passing how it's going. To be honest, it's been hurting. A lot. I keep getting teased with days where I feel fantastic only to be sobbing a few hours later. This is the part of the rollercoaster I do not like... the wavy part. Give me the big drop I can see coming, any day. Just let me have a little time to prepare myself for what's next, please.

I hit a 10 on the pain scale earlier this week; shivering in shock and crying. :'( That allowed the insane idea of taking a dose of oxycodone sound reasonable. Trouble was, it didn't kick in any faster than the pain subsided on its own but I still got itchy all over and short tempered anyway. I need to flush the rest of those pills down the toilet.

I have a good idea of what and why there has been so much pain lately. And I am trying to execute a plan to help smooth things out. I am absolutely convinced the pain is an anal fissure that has not been able to heal on its own for a number of factors including being back on the chemo. I know my immune system is getting beat down with each hit so even just being careful with my diet and drinking LOTS of water is only going to do so much. I'm just hoping and praying I can keep up the fluid regimen and possibly keep any leftover chemo from concentrating on me as it passes through and knocking me down when I'm already weak.

I look at the calendar a lot lately and the weeks are counting down; just seven left now and four more rounds. Round nine starts day after tomorrow. Even though it's so close to the end, each one just towers over me blocking out anything I'm looking forward to and I lose it.

I do not want to go through this any more. :'(

But I don't really have a choice. :'(

We are what we eat

2008-05-06T05:17:00.003-04:00

And with that in mind, be sure to avoid shrimp and boneless chicken. Also try not to fill up on bologna.

Ba da bing... I'm here all week. ;)

A few days of some seriously tiring experiences and a good amount of acute pain have brought this old adage back to mind this morning. As always I do not want to gross anyone out but I do need to put a lot of emphasis on getting much more water and real fiber into my diet. They're going to be the only things that really resolve the issue I've been having.

Not to say that things are not working. Au contraire, they're working well and I've been enjoying the ability to get out and about despite the impending resumption of chemotherapy this week. (I did manage to negotiate Wednesdays instead of Mondays so I won't have to miss my regular dinner out with my old highschool pals.)

That was last night, in fact, and I did not chose very wisely in what I had for dinner. Like most realizations, this one came upon me rather like a light being turned on; I've slipped back into eating very much the same poorly selected diet I've been eating for most of my adult life. Last night it was half a dozen buffalo wings, four mini cheeseburgers, a shot-glass sized carrot cake, and three glasses of iced tea (still not doing sodas and not really missing them). This after rather mindlessly snacking on probably twenty cups of kettle popcorn in the afternoon and only a glass of water to wash it down. Before that was three slices of take out chicken quesadilla, chips, a blob of guacamole and sour cream, and maybe a quarter cup of rather limp salsa... and nothing to drink. I honestly cannot remember drinking anything at all. Breakfast was a bag of crap from McDonalds I remember swearing off after seeing Super Size Me a year ago. Crap in this context is a Sausage McMuffin with egg and cheese, the ubiquitous hashbrowns, and a large decaf coffee (along with avoiding sodas, I have been pretty good about limiting my caffeine to iced tea).

I politely smirk when I hear my fit friends and acquaintances refer to meals as "fuel" and, in my head, I kinda giggle thinking, "Isn't that a little extreme?" But the analogy really is quite accurate as my tailpipe is going to show me today. You'd think that several days of tiring pain and irritation would wake me up to what a few friends and Dr. Grasso himself have been telling me...

Another part of the real solution for me is going to be losing the fat I'm still carrying around. Those of you whom have seen how thin I have become have been congratulatory and laughed with me that this isn't the diet plan I recommend. Since I started actually trying to get more exercise and make better meal choices waaaay back in January of 2007, I have lost right around 60 lbs. But I'm still shaped like a gourd and, again trying to avoid being graphic, where I'm still stored up for winter is all over the area that's been under the knife. This needs to change or just eating better is not going to cut it.

The ready made excuse goes back into my port tomorrow morning and it will be all too easy to let the chemo win. I will really have to try hard. Not having my old job assignment to look forward too, the ongoing long-term disability benefits gauntlet*, and the pain are already conspiring against me but it's only me that can punch through it. Yes, the light at the end is getting brighter, but for the moment I'm still in the tunnel. So again I'm asking for your support to make it out. :]

- Sco

* As for the benefits obstacle course, I've received some strange pieces of mail over the weekend that a) make no sense and b) alluded to a change in my health insurance coverage by hiding one sentence in seven pages of "certificate" statement.

The first one was a pair letters from the social security claims contractor congratulating me on a benefits award from Social Security (that I was told from the get go I would not get). I should be receiving a check and an official award letter from the SSA shortly. Blah blah blah. The only trouble with these two letters was it was I who told them I'd received a check and an award letter from SSA two weeks ago. I've been itching to fire these people since the end of March after a month of their incessant probing and far too many identity-risking edicts. People whom are truly sick or incapacitated must be getting steamrolled by these guys.

The second one was literally a certificate for me to provide to a new healthcare provider explaining my HIPAA rights (which the state of Maryland revokes with its own HIPAA-like law). Huh? I can't be turned down, etc, etc, if I applied in most states I have 30 days, if DC or Virginia I have 31 days, yadda, yadda, I only have 63 days to apply if I quit, COBRA this, FMLA that, you have receied this certificate because our records indicate your coverage with Kaiser has been terminated. What was that? Believe me, I'm on the horn before rush hour dies down this morning.

the home stretch...

2008-04-25T11:24:00.002-04:00

'Just got home from a post-surgery followup with my oncologist. I told her how things were going and that I plan to increase the water and fiber in my diet. I need to make sure that I do so that things downstairs continue to improve. We talked about another PET/CT scan at/near the end of treatment and, if the same uptake shows up downstairs, we'll go in for another colonoscopy to see what's what. (Like I said before, I don't think I can do this all over again... so I'm praying it goes away, completely.) We negotiated a restart date for chemo and agreed upon May 5th. That will be a Monday instead of my old Tuesday date, so I'll be missing my dinners out with my pals. No biggie.

That date makes my last chemo round the week of July 13-19. It seems so far off, but I'll get there. That date will also be just a month shy of when this all started. Talk about a year in the life of! I don't know what I'll do, but I think there may be a party.

A little closer though that date will also leave me free for some extracurricular activities.

Jody will be helping her friend Jolene at the Maryland Sheep & Wool Festival the weekend of the 3rd and 4th. Jolene is in the process of assuming ownership of a local knitting supply store and is hoping to kick off her tenure with success at the festival. I will probably tag along to help out too.

I am anxiously looking forward to the weekend of the 17th and 18th to get out of the house and camp with my track friends at the second V-Dub Deliverance weekend track event. I'm not planning to do much more than camp and socialize, but if I'm feeling good, I may try for a ride-along. I will bring my helmet just in case. ;)

Meanwhile, I'm trying to get out of the house more often now that I've got some confidence. The weather has been great but opening windows and puttering around the yard has not been enough. Yeah, the chemo will knock me down a bit but I know just how much and I'm sure I'll get through.

so far so good... and a little clarity

2008-04-21T08:44:00.002-04:00

First things first. No, I will not be going back to my old job assignment but I am still employed. This may be a strange thing for the non-contractors out there to grasp. Essentially, I am a hired gun who gets sent to work a specific job for a while. Though I may work in someone's building, my paycheck comes from my company whom was contracted to put workers on a specific task. My specific task, the one I was really hoping to get back to soon, has been contracted to another company... so that means I have to stop and let someone from that company take over. I really really really liked that job, but I'm not being hung out to dry. I'll get to work something else now.

It's been a bit more than a week home now and, knock on wood, it's going okay. I'm eating pretty much anything I want now still saving uncooked fruits and vegetables. The liquid diet quickly changed to toast and some fiber much to my better comfort. I'm debating dinner out tonight with some friends, but I think I'll be okay. I've got to try it sometime!

Potty training... or... Kick 'em when they're down

2008-04-16T13:31:00.003-04:00

Greetings.

As you may imagine, I feel lousy thus the lame 60's Batman show title. I have to honestly admit that today has been okay so far but I got some pretty hard news to swallow; I will not be getting my job back.

No, despite the hoops I was jumping with the company and the long-term benefits insurance and the seriously invasive Social Security benefits claim "service," my contract was awarded to another team yesterday. I got the news this morning. Since my company isn't part of the team that won, I'm officially out of my job. I need to get well enough to go clean out my desk sometime soon.

I'm still employed... for the remaining whatever number of weeks my long term insurance was limited to... but I won't get to go back to my assignment. That one goal keeping me moving is now gone. This is just the icing on the poop cake I've been served. If it's not clear, I am not happy right now. Not in the least.

Here at home though I was able to clean and change the incision both Sunday and Monday evenings without any help. Knock on wood I've won more of the fights for control than lost and made it to the bathroom on time; no major disasters, thank you. It has dawned on me I may be potty-training all over again like when I was a little baby. It's not like it's a skill we are taught or even something babies can learn except by doing it. Gotta hold it. I think I'm just learning that all over again.

I'm trying to be funny about it but in all seriousness this whole thing is making me feel like less and less of a man every day. This crap just keeps pecking at me. :(

Surgery went well!

2008-04-11T19:19:00.002-04:00

Hi all! Jody here to fill you in on John. He had surgery yesterday to reverse his ileostomy. I'm happy to say that everything went very well!

We had to get up extra early to arrive at GBMC hospital by 5:30 am. He was wheeled back into surgery around 8am and was finished by about 10:30. So - nice and short - not like last time!!

He had a great first day too - he ate all his lunch and dinner and had no nausea. He did have a rough night - but mostly because they kept coming in at all hours to take his vitals, blood, etc. He was definitely ready to come home - if only to get some sleep!

Today is a big day! It's John's first poo day! Happy poo day John! I told him I'd get him a cake for his first poo day - but the cake may have to wait a while as he is on a liquid diet for a while. Do you think I can write "Happy Poo Day" on some Jello? hehehe

More good news was just delivered as I was writing this. His doctor (Dr Grasso) just came to see him and he says he's ok to go home today! Yay! So - hopefully we will be out of here soon. That is fantastic news!

Thanks to everyone for their thoughts and prayers - we appreciate all of them.

-Jody

For Jody

2008-04-06T06:36:00.004-04:00

Today is the fifth anniversary of our wedding date. So much has happened in our lives since then with the reason for this blog only being the latest. I want to take this time to express just what being married to Jody has meant to me.

Little did I know I was exchanging emails with the girl I'd marry and come to love so much. I was pretty selfish in those days. Who am I kidding? I still am. Getting to know one another before we actually met, she wrote and asked me a poignant question that still makes me think to this day. Her question was, "What makes you smile?"

I do not honestly remember my answer but I do remember it made me think. We met at a local Thai restaurant based solely on the discovery that neither of us had really ever tried that kind of food. I remember trying very hard to not monopolize the conversation in response to being nervous about meeting her for the first time. She told me later she tried very hard not to judge me based upon the ugly sweater I was wearing; my favorite sweater at the time.

I began to learn and like more and more about her and within only a few months of dating, we arranged to vacation together in London. It was my first real trip outside the country since I was a kid and really only my first vacation as a grownup. We traveled well together and had a blast. Coming home though, I realized I'd been pursuing her for the wrong reasons and we broke up about a month later.

Then realizing my mistake I apologized for what I'd done and asked if we could start over. This was one of the first times of many I would see that Jody knew how to truly forgive an offense.

Our politics differed on the surface and she'll be the last to admit we really agree on what solutions we'd rather see to so many issues. We dated for another two years more taking in more new experiences and tastes and it dawned upon me that I could not remember life without her. Much less even want to live life without her.

You know the story of how I proposed and though I tried to make it memorable, I know she'd have said yes even if I'd asked while washing dishes or waiting for a light to turn green.

Our wedding day was a small miracle sandwiched in between two nasty days of cold rain and sleet. Our honeymoon was another adventure just adding to the memories we've collected together. Returning home, marriage began and we had some adjusting to do.

Jody has been so much better at it than I have, I am sorry to admit. And she has endured so much in just these short five years. I wish above all else that I could take some of those times away; not for my own comfort but for hers. She is one tough girl to have not only withstood those storms, but to have stayed beside me and steadied me when I've been shaken. I've said it before and I will say it again... I can never repay her the debt that I owe and I pray I never have to. She has been through enough already with me.

Yes, -through- all of those and stronger than ever. She is many things to me beyond my brave taste tester, tourguide, and girlfriend. She is more than my date for an evening or my fiance planning our wedding. She is more than the girl who read stories to me until I fell asleep or the hand I grab when we're climbing a hill looking for buried treasure. She is more than my nurse as we both ride out this mind numbing cancer treatment.

She is my best friend and the one person I need to see or talk to every day. She is uncommonly strong and resilient against the worst. She is faithful and loving and beautiful and fun and she deserves better than me. She is my wife and I love her more than I can ever say.

I love you, my Sweets. I am honored to be your husband.

Are we there yet?

2008-04-02T07:35:00.003-04:00

Can I once again tell you all just how tired I am of this whole deal? Yeesh...

Yesterday was a waypoint. I had appointments for a pre-surgery checkup and a post-round-6 oncology visit. I've been getting more absent minded and left my pre-surgery papers at home (five minutes away) and no matter how many times I offered, they wouldn't let me leave to go retrieve them. Finally, after calling the wrong surgeon, they let me jog back home and grab the one page order sheet... maybe the chemo is affecting other people. ;)

The oncology visit held the promise of PET/CT results...

There was good news and meh news. The good news is the metastases seen back in August are gone except for a handful in my lungs too small to characterize. The meh news is there was "uptake" (sugar that looks like cancer cells chowing down) at the very site of the j-pouch. No firm explanation was given though the analyst noted the site had lots of sutures while also noting other sites with sutures didn't uptake this same way. My optimism is running thin but is giving me hope that since that site had to be worked on for so much longer than the others, maybe it's just taking longer to fully heal and the uptake there is just evidence of healing still going on; not to mention healing has been slowed by chemo. But there is the possibility that not all of the tumor was removed. My optimism rebuts with yeah, sure, but my CEA is now too low to measure and all the metastatic spread is gone. I can't be sure and I'm praying through tears that it's just slow healing. I don't think I can do this all over again.

Even if that's the case, I still have work to do. One of the things I need to try to share is what I learned about Lynch Syndrome. Dr. Lee had asked me if I had any siblings or children because she'd learned of a DNA test that could help identify anyone related to me at risk for the same crap. In a matter of minutes, I read through the literature from Myriad (the lab that does the test) and was stunned.

There is a genetic mutation that, if present, poses an 80% likelihood of that person developing colo-rectal or endometrial cancer well before age 50 like most screening recommendations suggest. Finding it early may mean more frequent colonoscopies for that person, but it may also mean no surgical gauntlet like the one I'm running.

Myriad is also able to test for other genetic markers that may indicate other cancers like melanoma, pancreatic, ovarian, and breast cancers. Please visit their website and drop through the Hereditary Cancer Testing side for Patients and Caregivers. They have some brief questionnaires that can help you determine if you ought to have your doctor order one or more of the tests. For those of us who don't have or can't get family health histories, these tests may mean we're able to stop the train before we get to the bridge that's out.

Meanwhile, back in Real Life, Jody had to fly away at the drop of a hat to New Orleans for some hands on help. Her superiors had known the request was pending but did not manage to get her the specifics until the day before she was needed there. This on the eve of our fifth anniversary and me heading in for the reversal surgery. No, she was not going to be able to stay for two weeks. Had no one even looked at her calendar?

Even that got off to a bumpy start. I'm already lonely and chemo-bummed but now I lose my wife for the week. :( Want some more bumps? Jody's teammate, Wes, was to go along as well but the poor guy had an acute attack of something serious after I got them to the airport. The poor guy lost his lunch before boarding and wisely decided to stay home. I ran back up to get him home and we only made it halfway. I felt so bad for him and was genuinely weighing whether I should continue home or take him to the hospital. Turns out the rest of his family came down with it too after a younger member brought it home over the weekend. I really hope he's doing better... and that Southwest will manage to get his bags back to him.

On the brighter side of things, I've learned my young friend, Bree, is not only back in the US but is doing well at one of Johns Hopkins facilities. I don't know where yet, but she's had visitors and I mean to find out where she's at and go see her myself. She's got a port now, just like me, and she's not feeling very hungry, just like me. I want to encourage her and her brother and acknowledge what I know the whole family is feeling; this is not fair. But while that's true, we can put our faith in believing that it is where we're supposed to be and what we're supposed to be doing. And God has a way of assuring us of this too so even though I might be scared about that ambiguity on my PET/CT report, I can ask for help to get me through. I hope I can show that to Bree. Who knows? Maybe she's going to help me instead? :')

Please, pray for us. And I need to ping Dave again to see where he's at too.

A pleasant surprise

2008-03-27T14:15:00.002-04:00

So I wake up this morning and it's the end of round six. No friendly beeping just yet so I lounge for a bit and try to stay warm. This one hit a little harder than five, but nothing like the earlier rounds. That and this is the last one for a while since we're taking a break before the reversal! YAY!

Jody drove me in because the chills had my right arm and fingers on the fritz and I had to admit I wasn't feeling confident to drive myself. I was fine once I warmed up. We get back home and my phone rings with an unknown number... who can it be?

A familiar voice asks me if I'm me and says it's my oooold friend Chris calling. He's been stood up for a conference call, has some time to kill before a meeting, and has just hit the ground at BWI... am I free for lunch? Heck yeah!

I scrambled to remember the last time I'd even seen Chris in person and I still can't remember, but it was great to spend some time catching up today. We both lamented not staying in better touch, but that will be amended. Almost naturally we wondered what's happened to the others in our bunch and we only had bits and pieces to trade. I felt bad Chris wasn't all the way up to speed with the whole cancer thing, but hey, I'm gonna make it. ;)

We'll have to collaborate on finding those other old friends and have ourselves a little reunion. :D

halfway there...

2008-03-25T12:25:00.002-04:00

It's really a lot more than halfway, but this is round six of twelve so it is half of the chemo. A good deal has transpired so let me catch up once again.

For openers, I got the celebrity treatment over Easter weekend visiting my inlaws. By Easter Sunday, everyone at church knew Jody and I had made the trip and were anxious to see me. I was a little embarrassed for all the attention, but the love coming from that church aimed at Jody and I has been nothing short of awesome. I really enjoyed seeing everyone and sharing my thanks for all of their support. You guys are a very big part of getting us all through this, not just me. :)

I have to admit I was a bit fried for the weekend. I'd pushed myself waaaay too hard last Monday on a trek to the Jersey shore for a sweetheart deal on a rollbar for the BMW. With work still eluding me (more below) I've had more than my fair share of time to study some of the problems and solutions for the back end of the track car; namely the fuel leak. It hasn't reared its head since back in October, but I worry that it needs attention rather than just thinking it has gone away. Anywho, I borrowed Dad's truck and made the trip. I got to enjoy lunch at White Castle along the way and took a roundabout route back through Philly to stop at Pat's King of Steaks. The website may be lame, but the steak sandwiches are THE BEST. 1237 E Passyunk Ave in Philly... add this to your bucket list and definitely get yours "with cheese."

I'm rambling...

Yes, I pushed way too hard that day and I didn't really stop on Tuesday. With Dad's keys in hand I loaded up and made a run to the landfill. This all caught up with me by Tuesday evening and I was dead all day Wednesday. I managed to get packed for the weekend and then suddenly, it was here.

Trying to drive to Easton Thursday evening was a big challenge. Poor Hurley was terribly frightened either by his first nighttime ride, the radio, or the wind blowing our little Escape all over the highway. Jody eventually got into the back seat and was able to calm him down while I drove and spent what little energy I'd recovered. Driving in high winds can be treacherous... we didn't make it home to Easton before 11pm.

I'd missed a call from my boss alluding to something I needed to do to call the employee service people or HR and we've played phone tag since. We'd agreed (reluctantly on my part) to go ahead and wait until after the April 10th surgery date before trying to get me back in the doors again. That -does- buy us time to figure out any impact my less than 20 hours a week schedule may have on my pension and retirement stuff. There -has- to have been a precedent for what I'm asking to do; Lockheed is too big to have never hired a cancer patient.

That has been the least of my worries though and I want to ask you guys to add a young friend of mine to your prayers.

Her name is Gabrielle though she goes by Bree. She and her twin brother, Alex, are newly minted teenagers having just turned 12. They take an annual trip to Ireland with their father but this year has been very, very different. You see, Bree reached that time in a girls life where her biology changed and womanhood began. Unfortunately, this time seems to have coincided with aplastic anemia that forced her flight home to return to Ireland last Thursday. Bree was gravely ill and the anemia was not yet known.

There were lots of tears and prayers and the initial scare of leukemia was ruled out. Her mom, Holly, had run the gauntlet to get emergency permission to enter Ireland as she has never held a passport before. That and the flight were tough enough, but managing a sick daughter and a frightened son a whole ocean away did not help. Holly sounded like she was holding it together well when we did get to speak to her.

And though the leukemia was ruled out, the aplasia isn't that much better. It a nutshell, Bree's bone marrow may be shutting down and failing to produce -all- types of blood cells; red, white, and platelets. She needs a miracle. And if there was a little girl that ever deserved one, it's her. Jody and I will do anything for Bree, but right now all we can do is pray. We believe she's in the best hands and we prayed she would be. As if to answer our prayers before we asked, Bree's doctor in Ireland has been studying aplasia and recently published a text on treating the disease... co-authored with a doctor here in Maryland at Johns Hopkins. Guess whom Bree's doctor will be when she is able to get home? ;)

More later. I'm at the oncologist now using their wireless network but my battery is getting low. TTFN!

Ha ha!

2008-03-10T15:47:00.002-04:00

Not like you think though... more like Nelson from The Simpsons.

I mentioned the April 10th reversal surgery might wrench the works of me getting back to work. Little did I know there might be one thrown back at me.

The reduced schedule I was hoping to be able to work was actually acceptable to all parties involved. I was about to be officially told I could report back next Monday and I was happy. However, that schedule was not 20 hours a week so instead of being a "part time" employee, my official status would be "casual." What is not known right now is what being a casual employee might mean to my history with Lockheed or if it might mess up my pension or possibly my ability to become a full time employee again. There may be a risk I'm not willing to take, but none of us are perfectly clear on what might happen. The best thing to do right now is... wait.

I just want to get back to my job.

However, if that means goofing up my retirement or screwing myself out of tenured time (more vacation days!) then bank on me staying home until chemo is finished. It's just not worth it.

I will remain patient and hope the answers we're looking for mean I can work the reduced schedule. If it doesn't I will be okay with it. But, like other disappointing news has been, I'm not okay with it right now. I need to get somewhere cool though, and fast. Round five of the chemo goes into me tomorrow and I already know what chemo mixed with worry feels like... super crappy. :(

videoblog... take 3

2008-03-06T14:44:00.002-05:00

whatever... must post good news for a change

2008-03-05T12:57:00.002-05:00

I've tried and tried with the video and only managed to get a hyper-spaced video of me with sound at normal speed so I'm giving up for now. I have good news to share so text will have to suffice.

Yesterday I had a pleasant meeting with Dr. Lee and learned my CEA count is now 0.5. Booyah! That's what normal adults have; people with no cancer. With it now too low to monitor, we scheduled a PET scan for March 20th which will be late enough in the week between rounds five and six that I'll probably be feeling okay to get around. That will also be ahead of the reversal surgery which I anticipate being able to schedule soon because...

Today I had a flouroscope exam. It involved an enema and it was not as bad as I thought it would be. I made it through with just a little hiccup but I am thankful it is over with. Discussing the observed contrast, the doctor whom took the pictures concluded he saw no indication of any leak as Dr. Grasso was seeking. I have the films and I will drop them off tomorrow because, frankly, my own bravery only lasted so long mixed with a sour stomach and frayed nerves.

Dr. Lee upped my Protonix acknowledging I am a big guy and that I shouldn't be so bubbly unless I'm not getting enough dope. I'm going to anticipate next weeks downtime with plenty of bland items on the menu. We're on the homestretch now so I just need to hang in there.

I will get this video thing down though. If teenagers can post videos of themselves hitting a burning honeydew melon with a baseball bat, then I can figure this out too.

video blog, take two...

2008-03-04T15:47:00.006-05:00

dangit...

video blog... denied

2008-02-27T04:39:00.005-05:00

I tried to make a new post yesterday using an embedded video to actually show y'all how I'm doing. It was a good day for being an on chemo day. I got some nice surprises to offset the early onset of our friendly side effects, the least of which being a new laptop. :D

And ya know, I really wish Blogger included little smiley graemlins like the various web forums do.

Yes, I bought a new Dell Inspiron 1525. It was a top 5/10 pick in several recent pc editorial reviews and I know the Dell outlet site often has super bargains on refurbs and new orders not delivered; I paid $150 less than the current Dell $300 off code that's on the retail site now. That's nearly half off! Bada bing! This one was a refurb, but it does carry a years warranty and I have strong doubts I'll need it. 1.8GHz dual core, 1Gb memory, 160Gb storage, a/b/g/n wireless, Bluetooth, DVDR+/-, firewire, 15.4" widescreen, Windows Vista Home Premium edition, and some tres cool extras... twin headphone jacks for Jody and I to both enjoy a movie when traveling, a media access that starts a micro operating system to get onto the disk without starting Windows, and a 2 megapixel webcam hidden in the screen frame barely the diameter of a cheap ballpoint pen shaft. So yeah, that brought a smile to my face. :D

I got it out of the box and started setting it up for our network. First came permission to use the network then came the ubiquitous updates (only 9 since this box was built), then anti-virus (ask me privately if you really want to know my choice), and Firefox because IE 7 is a spitefully ugly tool. VAG-COM came next because it was the reason for buying a new laptop. The old one had served me well but the battery would not hold a charge making the VAG-COM cable useless when I needed to scan for trouble in the GTI last week (airbag fault!). The old one was a buy from back before Jody and I were even engaged so it was time for a new one.

In the midst of setting up the new machine I got a phonecall from Cigna... specifically my work incentive program officer. We'd not spoken yet, directly, though she was aware from comments on my case that I am seeking to get back to work. We discussed the resistance I'd encountered policy-wise from both Cigna and Lockheed. When I explained I was getting ready to campaign both my company and customer management chains to get their okay for my proposed schedule (one week on, one week mostly off) she agreed that would be workable. :o

See? There just isn't a way that :o conveys my total shock at hearing that news. Help me out, Schultzie...
So we chatted a little more for a whopping 20 minutes and by the end, I had just a slight change to make to my lobbying plan to get back to work. I can go back -today- if I want to. All I need to do is send in any statements for pay I earn and they can be evaluated retroactively.
HOT DIGGETY DOG!!!

That was possibly the best twenty minutes of the the last two months of my life.

So yeah, that brought a smile to my face too. I carved out a new area for cancer stuff on the new laptop and started with my lobby outline. I will solicit letters of recommendation from all of my doctors and management peeps and forward any that I receive on to both Lockheed and Cigna. Cigna will also get their own copy of Dr. Lee's initial part time release/limitations on me working at all. That will keep me smiling today while the 5FU drips away.

I had to blog about it but hey, why not try out the little webcam in the process? It worked well producing a four minute video (I outlined what I wanted to share like a little script) that chewed up 1.8G of storage. D'oh. Waaaaay too big for Blogger to swallow. I tried watering down the video capture settings but only got down to 350Mb which was still too big. I will give it another try because I think it would be nice for you guys who can't see and hear me.

Meanwhile, I have some prayers to ask you to join me in.

First is wonderful news from my cousin, Richelle, and her husband, Johnny; they are expecting a baby toward the end of the summer! I pray for a healthy kid and two sane parents on the other side and am so happy for them. :D

Next is my pal, Dave. He'll be going in for a biopsy/exploratory surgery on his spine where the edema and fractured vertebrae is. That's Thursday or Friday this week and I'm hopeful that at least the swelling can be abated and give Dave some relief. He and his wife, Shaye, also need to know exactly what's up so I'm praying for definitive results of the biopsy.

My chemo buddy, Greg, is off the drip this week but having more difficulties with his neuropathy causing pain and locking up joints now and then. He really deserves a break and if the supplements can't do it, God most definitely can. Please pray with me that he gets some specific help in those areas and can withstand the remaining chemo rounds we've both got coming up.

Me? Well The Bubblies are still there and this week's chemo seemed to wake them up earlier than normal; that's usually Thursday when the 5FU is done and my poison tank is full. Finding other things to concentrate one helps as does a little snack to keep The Bubblies occupied. Thus, the getting back to work campaign will help but a little more effectiveness from my pills or a little Providence would not be unwelcome. My car has an airbag fault that had been compounded by what appeared to be the steering convenience control module also dying. She goes to the dealer on Monday despite the steering controls coming back on Monday. :kookoo: I go in next Wednesday for a flouroscopy x-ray that Dr. Grasso will appraise to see how his work has healed. If he gives me the okay, we can schedule the ileomostomy reversal! And oh yeah, my hair is falling out. I'm getting this little sideways strip across the top with a little patch up front and a Shaolin kung-fu monk style in the back. I'm not happy and it's just the latest demoralizing loss in this whole deal. I don't know what to do about it.

Monster Jaaaaam!

2008-02-23T07:45:00.010-05:00

So my phone rings yesterday afternoon and my pal, Brett, has a pair of tickets he cannot use... for the Monster Jam monster truck show at the arena downtown. Can I put them to good use? A few phonecalls later and yes, I can.

Jody had no interest, but how about Alex? He got his grades back into shape and got new permission to play videogames with Mr. John when he's feeling well. To quote his mother, he was speechless when asked if he'd like to go.

So we met up and drove into the city with time to spare. I shared a little secret with Alex that if we paid for our parking before we went to the show, we wouldn't get stuck in traffic afterwards...

Inside the arena, we were greeted with the floor paved over in fresh dirt with jumps and whoop de doos and the commensurate sacrificial cars to be crushed by the monster trucks. I had a strong suspicion the relatively small confines of the arena would be mighty loud with the roar of unbridled, un-muffler'd, torque-happy monster truck engines. I was not wrong and I was thankful I had some nice, new, professional grade ear plugs to share with Alex.

Of course, I forgot to take the good camera. I forgot to take my old PHd camera. I did have my phone though...

Whoops... let me change the picture settings and see if I can get a better shot...

There we go! Well, sorta.

To be brief, the show was awesome. It started a little strange as the Cannon Lady was shot from her firetruck-sized cannon hiiiiiigh into the air and landed in a net right in front of us. She did this all without any fanfare or music though so the crowd was a little surprised.

Then came the trucks. In the timeless grunts of Tim Allen, "ARRR! ARRR! ARRRRRGH!!!" Eight huge trucks lined up in front of their four-wheeled victims promising to crush them to pieces. The contests began with a wheelie contest where the poor cars below served as ramps to launch the huge trucks into the air.

Things continued with drag race eliminations, over the gradually flattening four-doors. In between, the dreaded Team New York quad-bike racers managed to win the first of three rounds of Quad Wars racing on the dirt floor. They played nasty against hometown heroes, Team Baltimore. And with the first win, their team captain provoked the crowd by insulting the beloved Ravens wondering why we were booing the winners. They'd get theirs soon enough...

The drag race eliminations continued with favorite truck, GraveDigger, suffering a breakdown at the starting line! The tension mounted and fans were worried the truck would not be able to compete in the final Freestyle contest (it had won the Wheelie contest, hands down). The radical Teenage Mutant Ninja Turtle truck was there though to keep the fans excited.

The quad racers returned and Team Baltimore strategically put one of their men ahead at the finish for a big win. The crowd went nuts and sent the New York team packing with taunts and well-deserved boos. In the final race, the New Yorkers were out for blood and crashed on of the Baltimore riders in a scary moment. The rider was unhurt and Team Baltimore took the victory. The icing on the cake was the mouthy Team New York captain had gotten hung up on a Baltimore rider he was trying to bump off. Even after the checkered flag, he was flailing around on his ride and managed to flip himself over on his own butt. HA! Take that, Yankee!

Now it was time for the Freestyle competition. The trucks were offered fresh meat in the center of the arena with uncrushed cars and a big van to smash. Out came the trucks and in went the earplugs. I admit I'm a bit of a motorsports snob but man o man when those trucks were let loose to just do whatever the driver wanted... it was awesome. It's not about being fastest or most precise but being the most impressive. The trucks sailed through the air and bounded around on their huge tires, crushing the cars and van using them as launches, ramps, and sometimes as landing pads... with car parts falling and breaking on both the cars and the trucks. Sparks flew and the fans cheered when the GraveDigger truck emerged ready for the challenge. It closed the show in a spectacular finale spinning donuts and flying higher and farther than all of the other amazing trucks had done. It was totally cool.

I was very thankful to be feeling well enough to even think of going. Hopefully Brett will be able to let me return the favor so he can take his son tomorrow because Alex and I had a lot of fun. Thank you, Brett!

a little peace for a bit

2008-02-21T17:43:00.003-05:00

It's not completely gone away, but my stomach has calmed down a little. I do not know if it was the crushed Protonix pill or not; I asked my pharmacist and she said don't do that. :\

I did get to talk with my friend about what's happened to him. He's still in those surrealistic days since it's been just a bit more than a week that he found out. It's either a guy thing or something else but he too was strangely relieved to hear there was a reason for the pain he was having. It's in his back; one of his vertebrae, specifically. Whatever it is, it has caused a fracture and allowed that bone to compress with plenty of natural swelling that the body tries to use in reaction to an injury. To me he sounds like he's taking it well and he won't be leaving my prayers any time soon. I am very glad we finally connected and even more glad his treatment probably will not involve any radiation.

What about me? Well thank you for asking...

Jody and I paid another visit to Dr. Grasso this past Tuesday afternoon. I was expecting to get x-rayed with a little something extra (contrast) and I was psyched and ready. Nope. I misunderstood Dr. Grasso at our last visit and he wanted to check me out again to make sure I was ready for the x-ray exam. first it was holistic and then came the scope. His resident was attending as well so I got to do the exam twice. And I'll stop right there.

Everything checked out so I got the okay to get the x-ray and then some. I'll courier the films back to his office and pray we can schedule the reversal surgery shortly thereafter.

Meanwhile, long term disability is pending. Jody and I taked it through last night and this morning and decided to go ahead and buy my existing coverage via COBRA. It will cost a lot more but it will be far less hassle for the short time I'll be on it. I will also not lose the help of my case manager, Denise. She has been so awesome through this whole thing.

On the work front, I'm getting some resistance for the proposed schedule I think I can resume; half days for a week, off some of the next week when I'm on chemo. Lockheed doesn;t usually do that. I pushed a little and got them to at least consider it if I can get my doctors and my management to back me up. I think that won't be difficult. What's being missed in all this 'you need time to heal' chorus is the value of human interaction and the benefits of feeling useful. I'll give it a try... otherwise, I'm forecasting 20-22 more weeks off between the expected surgery, recovery, and the remaining chemo rounds.

Round four next week. I hope the Protonix works better with a few more pills gone from the bottle.

the captain has turned on the fasten seatbelt signs...

2008-02-17T14:52:00.004-05:00

Okay fine, I can wait forever but please, PLEASE get me some relief from The Bubblies. I do not know what it is this round, but nothing is helping. By Sunday I'm usually fine, but not this time.

I want to barf, but it's just not happening. I can belch now and then for a few minutes of peace, but they build right back up again. It's not as bad as when I was pumping dilaudid into myself in the hospital, but it is like the absolute worst case of airsickness ever. As if I've been flying in turbulence for a week.

It may all be added stress.

Despite hearing my long-term disability claim has been approved, I haven't heard anything on how/when I might get back to work. This is nothing though.

I heard that an old friend of mine is entering the arena to battle cancer. I want to rage but all I can do is cry that someone else I know and love has to go through this crap. I can't kid myself out of it and I just want to scream THIS IS NOT FAIR! He's hardly been married and has a little boy with his new bride. I know and I feel this is another test and that people are watching, but I am so angry. It's not right! NONE OF THIS IS! It's no excuse, but I just haven't got the strength. If I did, I wouldn't know what I'd do. I feel nothing but helpless. :(

Me and My Big Mouth

2008-02-12T19:10:00.000-05:00

Good evening, all. I feel lousy.

It's the start of round 3 and I'm pretty sure I jinxed myself bad this time. You see, last Thursday I got an iron drip. It was a different formulas and though I was seriously scared going (after that first iron experience) it went well and I had been feeling great. Yesterday ,I went into work. :gasp: Like I said, I was feeling great and I wanted to drop in for a visit so I had lunch with Dad and Richie and warmed the chair at my desk for afew hours. I shared my plan to let the long-term disability thing happen and get back to work early in March. Chemo this week couldn't possibly go as bad as before... I've got new iron in me!

Well, that doesn't seem to be the case. I'm struggling right now with a really weird shakiness on my left side and my old friends, The Bubblies, percolating in my tummy. Food isn't helping like it did before. I'm making more typos than ever just writing the post so thank you, Firefox, for the built-in spell checker.

'Serves me right for just saying I'm not getting my hopes up but not actually keeping my hopes from getting up. I really thought the iron would be a factor. Who knows, maybe it will shorten the lousiness? I could live with that, but I think it's just going to be like so many of my chemo friends who have good rounds and bad ones no matter what. For what it's worth, this is 25% done.

Chemo tech Brenda told me my iron numbers did improve which was a little surprise. I didn't think they'd check right away or that things would improve so soon. This was offset with news that my white cell count wasn't so great and Dr. Lee wants me to get a series of three shots to bump me back up. The chemo knocks it down every round so this may become a routine thing. Again, not really a surprise based upon the experiences I've heard from others. As I was telling my pal Clarence yesterday, it's a good thing I've grown pretty indifferent to needles. I used to be a big chicken about them. Go figure.

I hesitate again because it feels selfish, but I really need to ask for some prayers. The chemo is enough on its own, but the gauntlet with my disability benefits and the lonely hours at home have been getting to me. A lot. I need just a little more patience to just let the disability changes happen before I can get back to work. Hearing that it might be postponed even more has not helped because I'm just so anxious to be doing something useful other than sitting home alone waiting for the next doctors appointment. So, more patience for me or just an easy transition and no more waiting... or both, please. ;)

Round Two...

2008-01-30T17:54:00.000-05:00

I was going to make an ugly joke about what 5FU might really mean, but I decided against it. It was pretty lame anyway.

Suspecting the bad milk episode was a bigger part of the bad first round, this time I decided to make sure any milk I have is plenty good. This gave me some higher confidence going in for round 2 this week. That and I've got some extra anti-nausea pills just for chemo days as well as a daily Tagamet to curb any extra stomach acid.

I left the oncologist feeling okay though I got my first taste of the neuropathy sensations. Mom had a broken wiper blade I jury rigged but when I got back in the truck, my fingers felt like freezer burn. At home, iced tea gave me a little sting the first few sips and then felt like someone poked me in my voicebox. Ow. Later in the afternoon, Jody and I paid a visit to Target but the 5FU got to me and I ran out of steam. By the time we got home, I crashed and missed dinner.

When I woke up, I realized my mistake. I was shaky and Jody made me a pbj before bed. Within minutes I was much better. So, that led to a concentrated effort to eat a little something much more often today. As long as I have something on my stomach, I feel pretty good. Lesson learned.

In a hair less than fifteen hours, round two will be done. I will get a new schedule tomorrow that will include a second try at an iron infusion. This one is supposed to be much easier to swallow though it may be repeat visits. Dr. Lee is going to check Monday's bloodwork and figure up a dosing. I'll see Dr. Grasso on the 19th and hopefully get an idea of when the ileostomy reversal will go down. Until then, I'll be doing the chemo rounds every other week.

Knock on wood, this second round is going okay with the extra precautions and keeping the tummy working. As long as this goes into the weekend, I'm going to call my bosses on Monday and get my butt back to work. I'll admit it's a high hope but I am trying to be realistic in gaging how I feel rather than trying to get back just for getting back's sake.

When fighting clowns, go for the juggler.

2008-01-23T11:29:00.000-05:00

Someone on the cc forums posted to ask what had made any of us smaile a little bigger lately and that was a pun that made me laugh. ;)

It had been a few days of no laughing though. Round one of the chemo was last week and by evening on Thursday, I was hurting. The nausea pill I'd popped clearly wasn't made to last 24 hours in a guy my size even if I have lost a lot of weight. Lo and behold one of the side effects of the 5FU may be an aggravation of acid reflux. I thought I'd nipped that a decade ago which was why it felt so alien to me... I just felt like barfing really good would help but it never actually came to pass. So, I'll be rooting out a good antacid again (Tagamet and Prilosec come to mind) to get onto a prophylactic regimen.

Greg linked me to a study about glutamine reducing neuropathy in colon cancer patients getting oxiliplatin. Sounded interesting to me considering the monstrous goodie bag the manufacturer gave me as one of the patients. Inside was a pair of gloves, socks with warming gel inserts, a blanket, and a daytimer for keeping tabs on chemo. They clearly know what their drug does to most people... brrrr... I'm not looking forward to those side effects, but Dr. Lee said she'd read the study and consider signing me up for something if she thought it might help reduce the possibilities.

Speaking of Greg, he is probably getting his first drip even as I type this. I went to bed and woke up praying for him to have it a little easier than my first week. We'll be a week out of phase so at least one of us ought to be feeling okay, just in case you guys need one of us. :P

I hope round two next week goes a little easier with the extra protections on my tummy. Some of it may have been in my head, but there was no denying what I was feeling in my stomach. bleagh...

In other news, vwvortex had a front page article this morning about a college kid from NYC who went on walkabout with his car across our great country. I've been halfheartedly planning my own drive away and reading his story has me fired up again to continue my planning. I want to be able to camp and hotel my way along like he did and see some of the great sights. It's on my 'bucket list' so to speak (though I'd never call it that, I'm just using the recent movie title). In an ideal world, I'd manage to get the GTI across the country to Laguna Seca and be able to drive the track when I got there. Dad tells me I got to see racing there before my sister was born so maybe my car habit really is his fault.

AND OH YEAH...

Holly, please call me. I was feeling tres crappe' over the weekend. I couldn't email you back through the blog nor did I have your number in my phone. I have TWO gold bricks left to earn and I could use Alex's help to get them both.

mo bling

2008-01-16T08:14:00.000-05:00

My butterfly needle got the big baller upgrade yesterday with a take-home infusion pump chock full of 5FU chemotherapy. Can't touch this!

Literally. Trying to get to bed last night was a small challenge. The pump came with a little carrying bag that I thought I would just hang on the bedpost. That hung too low for comfort so I strung it up on one of the canopy rails above me and was a lot better. There is some slack from the pump to the port and the needle, but not enough to lay the pump on the floor. I didn't want to sleep with it next to me out of fear of accidentally hitting the buttons and turning it off or worse. Hanging above me it's safely out of the way and was pretty easy to unclip in the dark when I needed to visit el baño. I will give the pump back tomorrow morning and hopefully report I still feel okay.

Backing up a little, I went in for the first round of chemo yesterday. It started with an anti-nausea drip that either worked very well or was not needed. The oxiliplatin drip was next and took about two hours. I got my fill of The Waltons and Little House on the Prarie off the Hallmark Channel during the wait. :yawn:

Having started this process, I can now much better ballpark when to see Dr. Grasso again to check on the reconstruction healing. This will help pigeonhole a date for the ileostomy reversal too.

So far, the chemo has been okay though I know it starts off slowly. I am trying to remind myself that it is not being compounded by any radiation this time nor is it the first time through. It is a higher dose and though I know what the side effects might be, it is hard not to think they're coming on for real more than its just in my head. I just need to focus on eating well, doing the exercises I've been prescribed, and making sure the insurance benefits change coming up goes without a hitch. If I feel well enough after two or three rounds of chemo I'd like to try to get back to work. That is unless someone tells me I will lose or damage my disability benefit by doing so. I still really really miss my job! :(

To close on a completely random note, I am only three gold bricks away from completing Lego Star Wars II a full 100%. :D

Of course, then I will buy Lego Star Wars III...

bling bling

2008-01-14T16:19:00.000-05:00

Yo! I got me some new bling today! My old school power port done been upgraded with a (butter)fly needle!

Seriously, I went in this morning for an iron infusion as my last bloodwork came back saying I am anemic. However, the iron drip did not go well. Since this was my first time, the technicians hooked me up with a steroid to counteract any negative reaction I might have. Then I got a test drip of the iron infusion that I would either tolerate or react to very quickly.

Brenda, my technician, was chatting with me while monitoring how the test drip went and she spotted me going south right away. I felt funny for a few seconds and then went wacko. My head felt like it was on fire and pulsing with my heartbeat. My hearing started to fade away, my hands went cold, and my heart raced. I thought I was in serious trouble. Together, Brenda and the on-call doctor got me onto a Benedryl drip to calm me down though that intense dose gave me the shakes for what felt like half an hour... and knocked me out cold for an hour plus.

When I woke up, I was okay though still not really happy about the experience. I know it won't happen again, but that doesn't make tomorrow any easier. I start my chemo in the morning.

To that end I took home the butterfly needle in my port. Together with my ostomy pouch, I am stylin'. :\

Because the j-pouch resection is not yet ready for the ileostomy reversal, we're going to make the most of the next few weeks to get some chemo through me. It should go to town on the little lesions on my liver (maybe my lung?) but it may slow down the surgery healing already going on. We'll find out in about a month when I go back in to see Dr. Grasso again and see if the resection site is ready. If so, we'll stop the chemo for a short time and do the reversal. Then we'll finish the chemo. There will be some scans in there from time to time to see how the chemo is working.

Meanwhile, I am still going to try and see how the chemo affects me. If I take two rounds (three weeks) and am doing good, I'd like to try getting back to work in February. Meanwhile, I'll just pray for the treatments to go easy on me and do what they're supposed to do.

Pouch pockets, Porsches, and Prayers for my Pal, Please

2008-01-07T15:57:00.000-05:00

A little aliteration for the New Year. :)

First, some good news on the ileostomy. I hesitate a little to share this, but it's been a hair less than two weeks and I'm only only my second flange/pouch combo. When I got mad at the third one in two days, I may have struck gold. I really squashed the middle of the flange (the part we have to cut each time) and was determined to make it stick to the seal that we were trying to make sure would stick to my skin. Well, between being mad at it and being stubborn about getting it to stick and being paranoid about making sure it stuck... it stuck. Five days later, I got a little teary eyed again when I realized it was a record. So I did it again and this one is holding well too.

Just after Christmas, Jody and her mom were sewing and my thoughts wandered to a little knickknack I'd seen in the hospital. It was a cover for stoma pouches and I wondered if I couldn't make one. So, I asked for some scrap flannel fabric that Jody had and I proceeded to try to make one that might fit my pouches. I took a brand new one and laid it over two pieces of fabric then traced out an outline that would cover the pouch when I folded it inside, out. I took one piece and flipped it over on the back of the pouch to trace the inside of the flange loop so that it too would fit when folded inside, out. I carefully sewed open the flange hold first then sewed the two halves together. When I pushed the inside, out, it fit over the new pouch just like a nice warm, dry, mitten. I emphasize dry because even though the pouches has a fabric backing, they still make a little sweat against my belly that hadn't been so comfortable. It worked so well, I made another one. They've given me a little more comfort and some confidence to go out here and there.

In Dave's Porsche.

I will try to get some pictures, but yeah, I've had my friend's 911 Turbo S convertible for a few days. Both yesterday and today have been reeeeally nice for putting the top down. Oh yeah. Talk about a morale booster; when your friend dangles the keys to his sports car at you in trade for your commuter, by all means grab them.

In a bit of surprise to myself, I don't think I'd take one for myself. It is very very very well equipped for high speed travel. It would be a hoot and a half on any of the tracks I've been lucky enough to drive so far, but around town it's a workout. Trying to keep the speed down in this monster is genuinely hard to do. I used to get a giggle from that old Sammy Hagar tune, I Can't Drive 55, but in Dave's car I found a new understanding of Mr. Hagar's lament. It does not want to go slow. It doesn't even really want to go with the flow of traffic. It has a pathological, no, a psychotic need to hunt down taillights ahead and turn them into headlights behind. It was fun, but not for tame American roads. It had an unusual affect on road ragers too... I could see them approaching and then they'd quite cautiously slow down to pass me. Weird.

I will enjoy being reunited with my GTI. Dave emailed high praises for the gearbox and fun factors which were big parts of why I bought the car but I will not shortly forget the last few days in his amazing 911.

Which brings me to an abrupt segue. I've mentioned my friend Greg here before and I got word from him that he's staring down a barrel. I've been praying that the best comes to pass and ask right now for your help too.

His oncologist and surgeon are at competing facilities and can't seem to keep their opinions of one another from intruding upon Greg's care. His onc went into panic mode last week and made loud noises about Greg needing to start his chemo right away; like today. He nixed any idea of getting his ileostomy reversed beforehand. This is eighteen weeks (nine rounds) of poison before the onc will okay Greg to get his ileostomy reversed... which his has already been a bigger challenge than mine.

You see, he got sighted for his stoma almost immediately before his surgery and didn't really get a good one. From what Greg has described, his stoma is directly in the middle of a fold in his belly; such a bad sight that he can't really flex his middle without worrying. Getting up or down, sitting, etc; they all put his pouches at risk for coming off or leaking. It sounds like his flanges may be getting skewed like a taco shell if he's not careful. Eighteen more weeks of this would be hell.

The alternative is to get the reversal done first (which may be up to a month or more from now) but have to take 24 weeks (12 rounds) of chemo. I told him that's the plan B I've had to shift to since my j-pouch may take longer to heal than originally thought. My onc has no problem with this extra time though she intended to discuss overlapping the start of chemo with the revseral surgery. To her, there is no complication. I hope Greg's onc will come to this realization too instead of continuing to freak out. An extra six weeks (3 rounds) of chemo sounds like a better deal to me than trying to pary with il-fitting stoma pouches for three more months. Please, pray with me for Greg's team to get it together and find a professional, human solution to his care.

nothing changes on New Years' Day

2008-01-01T11:03:00.000-05:00

Sorry for the oblique U2 quote. It had to be done. ;)

No, nothing really has changed except for the year. Jody posted a nice reflection on 2007 but I'm just too overwhelmed with the most recent goings on. It feels like a lifetime ago but let me try to think about it.

I can remember trying to call home on Valentine's Day with a dead phone only to find Jody had upgraded me to a new RAZR as a surprise gift. I walked in apologizing for being late and not being able to call her when she sprung the phone on me. It still greets me with "Happy Valentines Day! I love you!" when I turn it on.

I can remember a great long weekend at the end of March to VIR where I got to meet the guy who would become this years' SCCA Pro GT champ, Randy Pobst. He would sign on later in the year with APR's VW GTI Koni Challenge team to drive with Ian Baas and Mark White; the former took me around VIR in my own car and convinced me it needs no new go fast parts but a faster me behind the wheel. What a great ride and what a cool guy Ian is.

Jody and I celebrated our anniversary on the water for my first ever cruiseship experience. I recall being nervous about the whole all-inclusive environment but somehow got used to it with ease. Our stops were nothing to write home about but the ship (RCI's Radiance of the Seas) was spectacular. I came home eager to cruise again but Jody isn't ready to slow down to cruising just yet. We're still nap of the earth kinds of vacationers. :)

Summer was uneventful save for more track days and me deciding on a different route for track toys. I had been saving money and collecting parts to build my own Factory Five Racing replica Cobra but I got to see one up close and personal and decided two things. First, it was too small for me and second, it really was a bit too expensive. For the same money, I could ball up my GTI and be stuck thumbing a ride to work. Let's spend a lot less and be like Jason... who bought a cheap old Porsche and was driving it like it had always been intended. I found a great deal on an old BMW and pulled the trigger.

Then I got sick.

At first I thought the old car had given me a mold or fungus and I just couldn't beat it back. The truth was it was colo-rectal cancer and damn, didn't that just change my life a little bit.

That's what dominates my present thoughts of 2007; just that final third of the year. I grabbed it by the horns and fought hard through early confusion and lack of information. Jody and I prayed hard and were given answers both as and before we asked. I came out of the first chemo and radiation period and regained a lot of strength. I thought I was doing well. The year would end with surgery and some genuinely unexpected difficulties. They have done their best to crush me, but I am still standing.

I do not stand alone though. God has been faithful to me through thick and thin. Jody has shown me strength I never knew she had... she may not have known she had. Both sets of parents have gone out of their way to support me, not to mention my family out of reach. Friends both old and new have found ways to tell me they care, they're scared, they're here for me, and that I'm going to make it. Not the least of all have been the specialists and doctors I've been led to whom have -all- spoken to me with absolute confidence that this nuisance can and will be beaten.

As long as I can hold on.

I will not joke with you guys; it has been really hard to keep my grip over the last few weeks. The lack of pain from the surgery has been substituted by pain from recovery and humbling challenges just to get out of the house. I've been, heck I still am afraid to leave home. I have never felt my stamina disappear so quickly nor been so worried.

So maybe one thing changes this New Years' Day and that is my attitude. I was able to focus and get regimental about my diet and water so I think I need to pray and get military about increasing my strength. The fifty pounds I've lost since this time last year should help. ;)

Please forgive me for the long quiet periods on the blog. I've been so down lately, tired, and just impatient about how slowly the recovery is going. It's been a serious drag on my spirit. I have my moments, but they aren't like they used to be... and that's one thing I want back once this is all done with.

Enjoy the Bowl games today and drop me a line. And for you locals, I am still home and earnestly welcoming visitors any time! :)

pre-Christmas update

2007-12-22T07:52:00.000-05:00

It's been a very good week thus far and I owe you guys an update... plus a little Christmas gift link to the funniest thing I've seen/heard all year. Read on.

To open, I heard from my friend Greg early this week. We had a great conversation and I'm very happy to report he's in as good a shape as I am and not back in the hospital or anything. He had some trouble with his sutures opening and infection starting but got a quick handle on the problem and did not have to be readmitted. His back has been trouble for him too and I shared the stretches Dr. Shaw had suggested to me.

Those have been paying off along with heat and some focused time on my feet getting out and about. My back still isn't 100% but it is getting there. I've been well enough to have tried to go shopping, drop in on my team at their offices for a Christmas luncheon, and driven myself back to GBMC for a checkup on my stoma.

Shopping has been tough and I pretty much stuck to getting the things I needed right away and getting back home. It was great fun to visit with a bunch of my coworkers and catch up with the news at work. They even got Jody and I a gift card for FYE that i think we may use for some music and games for Christmas. :) The trip to GBMC was the biggie though...

It was good and bad news up there. The nurse was impressed with my and Jody's handle on caring for the stoma and in the choices of products to use. She is concerned that the skin around the site is a little chewed up from exposure so she showed me how to use the Adapt paste instead of the Eakin seals to get a little better fit. So far though, the paste alone is not lasting quite as long as the seals and we may try to double up so that the skin is better protected and the pouch flanges last their full use. I had to exchange one yesterday by myself and it is already showing signs that it will not last through today. :(

I wish it weren't Christmastime because I feel I've been robbed a little. So much has gone on recently that I have had no time or even the thoughts of trying to choose gifts for anyone. So, in a rather cheap way I offer up a link to a seriously funny Sir Mix-a-Lot cover.

Merry Christmas, everyone!

first day on my own

2007-12-17T12:33:00.001-05:00

It's mid-day, Monday the 17th. I'm home alone for the first time in... I cannot remember.

I'm doing okay. I did not sleep very well again last night as my back is still bothering me. I got up around 6am and got some breakfast in me; Cheerios. I vegged in and out of sleep with Saved By The Bell on television. It's my secret guilty pleasure. Jody got ready for work and headed off a little later and I hobbled around a little before laying down again for 2010 which was funny to watch. As if the Soviets would still be a problem in that year. The moral of the story was to tell HAL the truth and trust that he/it would cooperate in saving the astronauts and cosmonauts lives.

I'm psyching myself up to go for a walk outside. I know I need to do more walking and that it will fix my back right up. But it looks cold. I may try to go to a shopping mall and walk indoors instead but I'm still spooked about losing integrity of my ostomy bag. It's happened a few times now and all I've been doing is laying around. :(

I need to make some phone calls and do some paperwork too. I'll do those when I get back from my walk... because dangit, I need to be able to sleep without my back hurting me!

prayers, answered

2007-12-13T08:40:00.000-05:00

You know, it really is good to have a faithful God in heaven who hears and answers prayers.

My back is still the big problem but my worries about infection at some of the incisions are over. The staples came out on Tuesday last just in time for a bag change. I was in tears praying beforehand that the new two-piece ostomy bags would work well but afraid that they might fail too.

I believe God already had that answered last week when I ordered (blindly). I am happy to say the new ostomy supplies are working the way we need them to. God definitely put us in the right hands with the pharmacy as we got excellent recommendations for products to use and clear advice on how to apply them. The first bag swap from the new supplies has lasted three days now! And the two-piece bag is sooooo much easier to empty and clean. I do wish they had the little gas filter and a more solid bottom opening, but the two part design is much more livable than the one part stuck to me like I had in the hospital.

I've also been able to temporarily get some relief for my back using a little leftover oxycodone (Dr. Grasso said it was okay) and a rolled up beach towel right about where I wear my belt. It just occurred to me like :bing: I should try this. While laying down I can get my lumbar lifted back where it's supposed to be and give my muscles a big break. It's not the answer, but it's working in the meantime.

I'm worried about my friend Greg as I've not heard from him in a while. Imho, he got shafted with his ileosotmy. He was not told it could happen to him until right before his surgery and he did not get any advance education. If he's had the same troubles I've had, I know he's feeling pretty blue. Please, pray for Greg too. :(

prayers, please

2007-12-10T14:33:00.000-05:00

Hello from home, still. It's been a rough few days with several challenges and I need help.

For openers, my ileostomy has been a very big hurdle. Jody has done an outstanding job of helping thus far with what is easily the grossest thing. The trouble is one of my incisions is very close to the stoma site and the bags that attach there are too easily foiled by the refuse escaping into the bag. It wets and works its way along the incision causing a predictable leak and inevitable infection in the suture itself. I have supplies coming to help dam this area and make the bags more reliable, but they do not arrive until tomorrow nor am I an expert in applying them just yet.

Second has been the trauma to the nerves below. Both my large bowel and bladder are nearly numb and I have to work to sense when they need to be emptied... or stopped. Two accidents during the nights so far have humbled me and I know nothing I can do but pray and wait for the feeling and control to come back. I am trying some clenching exercises in hopes of jumpstarting the automatic controls, but I know I need real healing.

Finally, my lower back has been an absolute spaghetti knot of spasm. Mom guesses it is from an extended period in stirrups in surgery, but I do not know. All I do know is I hurt. Massage and Tylenol have only dented the problem and I'm dying to visit my chiropractor. Unfortunately, he has shied away from seeing me so shortly after surgery but he sympathizes and told me he'll be there as soon as I can take an adjustment session. For now, I just need some relief more than traction at home has given me.

Otherwise I'm doing really really well. My appetite is back despite having to think about chewing everything real well. I am sleeping a little longer at night between interruptions. Both of my Moms are here with me today and I'm feeling alright. It's just these moments that hit me a little harder than normal that I need the most help and I pray for faith and strength to get through.

spinning

2007-12-06T07:35:00.000-05:00

Last night was tough. It is a relief to be home, but it took so much energy to get here that I think I've lost something. Sleep came in small chunks and various contortions but my dreams were horrifying. I kept floating through some sort of clandestine backwoods surgery where doctors were strung up on bungee cords being threatened to perform procedures or be shot. I didn't know if I was one of the patients or one of these terrorist dudes just that I was scared to death and I could do nothing to force my mind to more pleasant things. I emptied my ostomy bag several times through the night and Jody snuck away to sleep elsewhere at some point. I wavered from freezing to stiffling. At one point I put my head down by my feet and curled up with Hurley and it was the most calm sleep I got all night. I'm not sure what I'll do, but I just pray for some normal pattern.

In the world of the awake, I have an appointment today with a home care nurse in just another two hours. I have a followup with Dr. Grasso next week to have the staples removed. I see Dr. Lee on the 18th for a visit and will visit Nurse Simpson back at GBMC on the 19th to report how I'm getting along with the bag.

Speaking of the bag, it will be with me a bit longer than first expected. I see where Jody learned why, but I learned why differently. It was a blow for sure and pushes my dreams of track driving my Bimmer back to the end of next season instead of the beginning. I'm just thankful for the success Dr. Grasso had with the j-pouch and I got the feeling he was thinking of me and the car when he put in those extra hours to avoid a permanent ileostomy... that would have sentenced me to the grandstands.

I need to call CIGNA to start the long-term disability process that will certainly kick in now that the surgery has dictated a longer calendar. Jody and I will need to prepare for the impact to our budget and adjust accordingly.

Realize some of this is just me being methodical and staying focused through some really weird sensations and unusual pain. Tylenol does a little good, but these weird muscle pulls and constant indigestion are persistent. I feel like I could use a good belch almost all the time. It's probably a sign of hunger so I'm going to get some breakfast and get ready for the home care nurse.

Please, say a prayer of thanks with me today. I am so happy to be home, even in this shape. I am just thankful to be on the other side and heading -out- of the woods instead of deeper in.

I am home...

2007-12-05T18:34:00.000-05:00

Yes, I am home. I've not kept up with Jody's entries (blogger.com wouldn't resolve on GBMC's very low strength wireless network) but I will regain some strength and act accordingly. I've done more work just getting home today, through our first snow no less, and -finally- getting a shower that I've just not got the strength to write much tonight.

I can go no further without stopping to thank God for being faithful to me and answering every prayer I lifted up this week. From giving me the strength to endure the tube to getting my bladder under my own control last night, all of the steps I was able to accomplish were answers to my prayers. Being released home and a safe drive through the weather were only just today.

I will write more, soon.

The tube is gone!!!

2007-12-03T21:57:00.000-05:00

Woooohooooo!!!! We're celebrating today! They finally removed the tube today from John's stomach!

Thanks for the prayers and positive thoughts - it was definitely needed.

John drank his first few sips of water today, followed by tea and soup for dinner. He was finally able to get the nourishment he's been needing.

His stomach is working again!!

And that's the first step in his recovery.

Still going strong

2007-12-02T23:39:00.000-05:00

Hi all - Jody here again.

Sorry I haven't updated you lately! I've been spending every moment I can at the hospital. I'll try to catch you up:

Friday - I arrived to find John sitting up and looking great! He had a great deal of pain in his abdomen, but less than the day of the surgery. He felt well enough to get up and walk the halls 4 times!! He was able to eat jello, soup, and Italian ice for breakfast, lunch and dinner! I helped change his ileostomy bag (not as gross as I was expecting) and it was generally a good day :)

Saturday - I arrived to find a "Nothing by mouth" sign on his door. I immediately knew this was not a good sign. I walked into his room and found he had a brand new tube... this time coming from his nose. He had started throwing up bile during the night and Dr Grasso prescribed a tube to drain his stomach. There was too much bile in his stomach and it wasn't passing through to his intestines, it was instead going the other direction. The green bile was coming out of him in such large quantities I was a bit scared. He was so good on Friday and now he looked terrible. The nurse said it may have been a reaction to the meds or to the anesthesia during surgery. He felt a little better by the end of the day and we were hopeful the tube could be removed the next day.

Sunday - I was hoping to walk in and find his "Nothing by mouth" sign removed, but no such luck. He still has his tube today. They tried removing the pump (while still leaving the tube in) but after an hour when they pulled back on a large syringe to see how much was still in his stomach - there was still A LOT of green bile coming out. He ended up throwing up again and getting the tube re-connected for another day. This is the second day of no food and no water except an ice cube every 15 minutes. He's very weak and uncomfortable because of the tube. Pain wise - he is feeling much better and they were able to remove his pain med pump. He's now getting a pain/anti inflammatory med every 6 hours. I hope the removal of the pain pump may help the stomach issues - he mentioned he was very itchy too - so he may be having a reaction to the medicine.

Keep you fingers crossed that when I go to see him tomorrow - the sign and the tube will be gone!

Thanks for all the prayers and notes...

Oh! I almost forgot - Yeah Greg! I'm so very happy to hear your surgery went well :) John will be very pleased to hear to good news!

8 hours later...

2007-11-29T22:02:00.001-05:00

Hi all - John's wife Jody here taking over the narrative for a while as John heals from his surgery.

Let me first say that John is resting in his room right now and the surgery was a success! The tumor has been removed.

Now - this is not to say it was a perfect day. Let me walk you through the day from my perspective:
3:00 am - wake up - can't fall back to sleep - too nervous
4:00 am - actually get up and shower
5:00 am - leave for hospital
5:30 am - check in at at GBMC hospital
8:00 am - after several attempts to access John's port and a couple thousand papers to sign later (did I mention John forgot his wallet at home!!) he was finally ready for surgery and they wheeled him away.

At this point I retire to the waiting room. My in laws are there with me too. (Their day started out badly after being rear ended on the way to the hospital but they are both fine!).

Soon my friend Jolene and my mom arrive to join the vigil. We hear nothing until about 12:30pm when I get a phone call saying that the tumor has been removed and John is almost done. Yeah!

So I wait...

and wait...

and wait...

...until about 2:30pm when the phone is for me again and it's from the OR - they are still operating on John - but they assure me they are almost done and I should see the doctor in about half an hour. Yeah!

so I wait again...

and wait some more...

...and then another two hours go by - and I get another phone call. They had some complications at the last minute and were just now closing him up. They say Dr. Grasso will be up to see me in 2 seconds. I don't believe them anymore by this point, so I prepare myself to wait some more.

But - in about 5 minutes Dr Grasso does indeed come out to see me! he explained to me what happened:

Basically, all was running smoothly until they went to put the staple sutures in his new "J pouch". when he noticed that they had all ripped! Apparently his colon and bowels were still very fragile and damaged from the radiation. So Dr Grasso says he only has two options in this situation:

1. Try to stitch it closed again
2. Put in a PERMANENT ileostomy bag (not a good option)

My breath caught in my throat at this point.... He then explains that he was able to repair the J pouch and save his lower bowels.

THANK GOD!!!!!!

Dr Grasso was able to put in three miracle stitches to save his lower bowels and the day.

By the time Dr Grasso is done talking to us - I am so relieved, that I finally allow myself to fall apart a bit and get in my first cry. More of a release than anything else. He was OK!!!

Next came more waiting.... I wasn't able to see him until 7pm when they finally rolled him into his room. I saw him get settled after a very painful move from the gurney to his bed and then I left for the evening to try to get some sleep before heading back over tomorrow.

I'm sooooo tired and sleepy and slightly delirious at the moment, so I apologize if this didn't make complete sense. But at the end of a very long day - I'm happy to say John is ok and hopefully on his road to recovery.

Thanks for all the well wishes and prayers - it means alot.

surgery on Thursday... visitors guide

2007-11-26T06:21:00.000-05:00

Zero Hour is approaching. Ever since Dr. Shih gave me the news I've been anticipating surgery to get the tumor removed. All we've been going through has been leading up to this week. I feel a little naive having thought back then that I'd check into the hospital really fast and get things taken care of. The reality has been scary at times but I thank God for answering my and your prayers to carry me up to these days, several months later.

I have a gate to go through over the next month. Technically, my large intestine is going to be offline while the resection heals. It is amazing how far medicine has come. Yes, I'm going to experience some pain as well as some weird sensations, but I know this time to heal is temporary and necessary. To that end, I'm refreshing my call for visitors!

Visiting hours are 9:30am until 8:30pm every day. I've been advised to tell everyone to wait until Saturday or Sunday before coming because I will be pretty loopy on Thursday and Friday. That should be fun. I will also most likely be in the hospital until Wednesday next week so some weekday visitors would be great! Beyond that, I would ask you to give Jody a call to see where I'm at and if I'm in shape to have visitors. If you need her number, email me this week before I check in. :)

Greater Baltimore Medical Center (GBMC) is located on its own campus inside the beltway, just off of N. Charles Street in Towson. From the beltway (I-695), take exit 24 and then go south toward Baltimore city. You'll climb a large hill then wind your way down the other side to the light at Malvern Avenue.

Turn left at Malvern into the GBMC campus and nab a parking slip (max is $5/day). After the parking pavilion, head up the hill and to the right passing a road on the left and a daycare on the right. As you reach the Daffodil parking garage on the right, look for the main hospital parking lot on the left. The main entrance is tucked into the buildings close to the road. The reception desk inside can tell you the room I'm checked into and clear you for a visit.

Here is a link to Google Maps highlighting GBMC.

And here is a link to GBMC's own map and directions page.

I'm doubtful I will have Internet access while admitted and I'm also doubtful I will want it very much. In the meantime, I've invited Jody to post updates here for those of you whom cannot make the trip. I'd love to see all of you, but I understand the trek may be tough to make in those limited visiting hours. No worries though... I'll just not visit you in the hospital when you get laid up. :P

My specific prayers this week are for continued defenses against my old friend Fear. He's had me chewing my fingernails off though I know I really get the bargain end of the whole deal; all I have to do is show up and fall asleep. LOL!

Additionally, both my parents have been very very sick with what may be this virulent cold that's cropped up and is resisting antibiotics. Dad has been especially down because he cannot take the full dose of his drug for the negative consequences to his kidneys. I had to miss Thanksgiving with them because they were afraid to pass it along to me before surgery. :'(
Please pray that they are healed.

Also on my heart is Greg out in Wisconsin. As you may have read, he's going in for the exact same procedure the same day I am and I know he's had to have been feeling something similar these days just beforehand.

Finally, I just want to give thanks for all of the doctors and nurses, specialists and support staff whom have expertly done their jobs in helping me get to this step. We're not done yet, but I am very glad for the talents and skills these men and women have been given and shared with me to make sure I can do goofy things like blog about my treatment. They've made this as easy as it could be no matter how much I may have already complained.

See you all soon!

[edit] Jeez... I can see the bump from my port... and yes, those are new eyeglasses.

[semi-important warning] No citrus for Christmas this year, please. Well, maybe some, but it will be for Jody and not for me. I have to avoid heavy fiber foods while me and Th' Bag are partnered up so oranges and fruitgrapes and those awesome honeybells are off my plate this year. No one is more disappointed than me. :(
Shelled nuts are out too. I'll be getting a full list after surgery.

And the answer is, "aaaaaaahh..."

2007-11-21T07:43:00.000-05:00

The question of course is, "What sound does John make when relaxing in Cancun?"

[edit] This just in... Jody has a collection of photos from our trip online, here.

I regret to report that we are home from our brief escape. USAir did their best to attempt to ruin the trip by screening the worst movie I have seen since "Knocked Up." They showed Michael Bay's "Transformers" and it was awful. Like the other movie mentioned, it had the weakest possible storyline. Who on Earth (short of the flimsy Optimus Prime and all of his equally fragile cohorts) believes a mouthy teenager has artifacts for sale during show and tell time in his history class? And his father ponies up two grand for half of a complete POS Camaro? I know we're living with $3/gallon gasoline, but four G's for that pile of junk is so Unbelievable Hollywood... even if it did turn into a robot... the looked like -I- could take it down with hand tools.

Sorry. I grew up in Japan in the 70's on a diet of seriously tough giant robots. I am a robot snob.

Bienvenidos a Mexico! Are you sure you have a ride to your hotel?

Cancun's airport had changed, but the gauntlet to get to the pre-paid taxi/limo area is still the same. We boarded a Volkswagen Eurovan (you knew I'd mention it, Jody!) and were soon whisked away to the Westin Regina... er... the regular hotel side. Yep, another attempt to ruin our weekend as the spa and our condo-like room were in the building that was closed for renovations. We got booked into a (very nice) regular hotel room. We got a $40 credit for the restaurants and complimentary buffet breakfast.

This is where things began to work back into our favor. Breakfast was awesome. As I may have mentioned before (or elsewhere) I am a breakfast guy. I like breakfast foods and the Westin Cancun took care of me. Fresh fruit and Mexican dishes and seriously good coffee and this awesome hot chocolate drink started every day. And what busy busy days we had...

Here is how a typical day went this past weekend...

breakfast, find a secluded palapa on the beach, position a beach chair under the palapa for good shade, lay back, knit socks or do sudoku puzzles, periodically move the beach chair to stay in the shade, enjoy the sounds of the waves and the breeze in 80°F weather... repeat daily

Like this...

We left the hotel one afternoon to have lunch and shop but that was not necessary. If you're thinking of taking a trip yourself but are afraid of foreign places, go to Cancun. You will have all the Hard Rock Cafe, Outback Steakhouse, Harley Davidson you can stand. It's like we were in the US except everyone spoke Spanish. ;)

We stayed at the hotel otherwise and had no problem with doing so. The bar and grill by the pool served yummy lunches of quesadillas and guacamole and a BLT sans the B one day. In the evenings we tried both of the sit down restaurants and went back again to the beachside place, Sea and Stones. They're right on the beach and serve very reasonably priced dishes that you cook for yourself on super hot stones. They were like smooth pavers heated so hot they'd cook our bite-sized marinated meats right before our eyes a la fondue or hibachi style. The meals were so good and relatively inexpensive we indulged and had dessert both nights too. :d

On the beach I managed to get swept away long enough to forget to sunscreen my left arm one day. I'm paying for it now but the sting just reminds me of the relaxing weekend.

Back home, reality was waiting. Yesterday I had to get a pre-surgery checkup and an EKG. I got the BMW dropped off for the inspection and alignment. Today I will get a chest x-ray and give another coupla vials of blood so that I'll get the green light for surgery. I will also followup with the radiology clinic and get an orientation brief for the ostomy I'll be attached to. Then I'll come home again this afternoon and get to work on Thanksgiving; I'm making the turkey and I'm glad I can do it. With luck, the BMW will be ready for me to bring back home this afternoon along with new stickers for the tags! :)

:chik: :chik: :chik: :chik: :chik: :chik:

2007-11-14T15:44:00.001-05:00

That's supposed to be the sound of a rollercoaster climbing that first big hill. Again. ;)

I had another followup with Dr. Lee, my oncologist, yesterday. I joked with her when she commented that I looked like I was feeling much better. I said it was amazing what -not- poisoning yourself and napping inside a microwave every day can do for you. :P

I had a short list of questions I knew most of the answers to. Yes, I will be on chemo again to attack and kill the metastatic disease. It will begin two or three weeks after the ostomy has been reversed which will likely be about a month after surgery. I'm gathering that means chemo starts mid to late January. It will be a sequence of visits for bloodwork on day one, drip for a few hours on day two, then home with a little pump on my belt until day four. That four day cycle will repeat every other week for twelve rounds... twenty-four weeks... almost six months... and it's going to 100% instead of the 50% regimen of Xeloda that already sucked pretty bad.

But there won't be any radiation exposures to endure!

Lots of people go back to work during this period of their treatment and I've read a lot of good advice. It's a lot like riding a ride I've already been on. I know when the drops and loops are now and I know when to scream. Screaming always helps keep your stomach from getting upset. This time through I may be able to relax a little and wave my arms around knowing more of what to expect. It's not so scary.

Let me balance that with a little news from the garage...

The Pickle lives! I've probed and pushed my limits a little over the last two weeks as my strength has returned and made some progress on the BMW. I got the heater core out and began cutting out the carpets and accessory wiring. I was able to successfully bypass the heater core, fill and bleed the cooling system, and take her out for a brief drive last night! reading the Bentley book, I needed to get the engine up to temperature to check for leaks and expel any air in the system. So, I grabbed my celphone so I wouldn't get stranded anywhere and took to the streets. After a few minutes drive I stopped and checked things over... no leaks. :D

With that success, I will have the car in for an alignment and the state inspection next Tuesday morning. I am really looking forward to finally being able to legally drive the car more often to shake out the bugs and fine tune everything.

Of course, that will have to wait for a few days while Jody and I retreat to Cancun for a long weekend. We'll be in the air eeeaaarrrlllyyy tomorrow morning and in Mexico before lunch. I am so glad I've got the energy to make the trip.

In closing, I want to add my new friend Greg to your prayers. His tumor is higher than mine and he was a few weeks ahead of me on the chemo and radiation journey. We will both be going in for surgery on the same day. I asked him if he wanted to race... ;)

What a week(end) I'm having!

2007-11-11T08:34:00.000-05:00

Do you guys remember Eugene Levy's character in that early 80's movie, Splash? You know, he was the geeky scientist trying to prove Daryll Hannah was a Mermaid while Tom Hanks defended her honor (waaaay before double fisted Oscars). "What a WEEK I'm having!"

Sorry. Very obscure movie quote moment passed. Please continue.

Yesterday, Jody and I got to go on a little weird adventure. It started out innocently enough. We were going to meet her parents half way from our homes and do the doggie exchange. Bailey and Hurley are at the grandparents house now while mommy and daddy go to Cancun later this week. (woohoo!) We'll all be reunited for Thanksgiving but that is only where the day began.

We'd been invited to a housewarming party for some old friends of mine whom recently bought a new house. The party would be later in the afternoon so we poked in a more leisurely route to the address on our GPS and drove through the PA countryside. En route, I saw we would pass through Hanover and my thoughts went to a cowrker whom lives up there and routinely brings in barrels of pretzels from the factory. I love a good crunchy sourdough pretzel so I punched in Snyders to see if the factory wasn't along the way.

"Drive 2.1 miles then turn left onto Pine Road." (in the robo-female-British-accent voice)

Bada bing we got some pretzels... and some cookies...

Back en route (or so I thought) we stumbled across the Utz factory and zipped in for a tin of chips and a couple of bags of Crab Chips (Old Bay) and some sweet and salty crunchies for making our own snack mix without the little white-bread crackers.

We were on a snack trek.

Now back en route I saw our arrival time was only 10 minutes away and I thought we were doing well. But noooOOoooOOooooo... Jody had commented that we were close to a yarn mecca and had looked it up. She insists she clicked "No" on the add waypoint question, but the GPS was taking us there instead of the housewarming address.

Fine. We only had a half an hour to spend there before they would close and the housewarming would be ongoing. Jody got some yarn (natch) and a book and I spotted a cool, quirky winter hat that I liked so she got the pattern for that too.

Back to the car and back on course for the housewarming. 30 minutes away... cool. :)

Upon arrival at the house, it became evident this would be no usual come on in take a look around have a cookie kind of affair. You see, the house was the new digs for newly minted Mega Millions winner Bunky Bartlett. :D His wife, Denise, and I have been friends for a decade plus having met at work and shared a expansive sense of humor that early and long-time Internet users "get" while younger, newer people abbreviate there humor into txt msgs. OMG LOLZ 8 U.

As we approached the house, we ran into Brian (Cheebie) and Christina Merchant; part of the same group of old friends who "get it." They were headed home before dark (sorry!) but we had a quick visit and then headed toward the house. Behind and beside the tudor styled main house were two staggeringly large tent buildings erected for the Bunk Bash; the first held a small concert theater for several hundred people while the second would be our retreat for a buffet dinner and karaoke into the evening.

I found Denise right away and expressed my stunned amazement at the scale of the party. Bunky bubbled past shortly thereafter and I got to introduce them both to Jody. We found more old friends Kathy Roznowski, Jeff Lesniak, and his wife Vicki Amb-Lesniak whom shall henceforth be referred to bu her royal title of Da Queen. DQ for short. It is arguably Vicki's fault that we're all friends to begin with.

We found some warm drinks and chatted knitting and cancer and photography and holy cow can you guys believe Bunk hit the lottery. Soon, Bunky took the stage and announced Dilana to the crowd; he'd flown her and her band in for a private concert. You may recognize her name from the most recent reality/talent contest on CBS, Rock Star Supernova. As Jody put it, they were my kind of rock band. :rock on:

It was mighty chilly and I'd embarked on our adventure without a coat. It was too loud for Jeff so we retreated to the other tent that was enclosed and heated. We talked more and enjoyed the music at a distance and were perfectly positioned when dinner was served. All the food groups were represented... steak, chicken, fish... the catering was excellent.

Bunky had given me a card that the State Troopers would accept as an okay to tour the new house. Jody and went inside and checked out the new house... and were awed. We really liked the idea of the pendant lighting in the living room and I gushed over the bidet in the first floor bedroom's private bath. Hey, I have rectal cancer and keeping clean 'down there' has become a real priority. :P

The day was catching up with both Jody and I and we returned to the tents to find and thank Bunky and Denise for inviting us to their new home. We left just a little before the party was slated to end just beginning to pick our jaws up from the floor. :)

I wonder what today will bring?

the calm before the storm?

2007-11-09T09:54:00.000-05:00

It's really hard to fathom that just two weeks ago I was having some of the worst days of my life. The chemo and radiation had just finished and I was looking forward to feeling better instead of feeling fried.

But here we are just sixteen days later and I feel really good. I did make it to the Punkin Chunkin last weekend though I was pretty wiped out on Sunday afterwards. Through the week I've done a little work around the house and given in to my temptation to tinker with the BMW. And oh boy have I tinkered...

So far I have managed to cut out the majority of the carpeting and replace the drivers seat. The rear seat and trim panels are gone now and I will go after the decaying fuel lines through the service port back there. I got the heater core and supply tubes out under the dash and will be working on a bypass while I figure out which piece has failed (my money is on the heater control valve). I carefully extracted the trunk toolkit and factory alarm system from the car that some geek may be lusting over. Sometimes car guys get obsessive about original parts and options. Do you know the way to use eBay? (cue corny eBay music) I was not so careful chopping out what appears to be an antique carphone wiring harness. I believe (knock on wood) one of those two electrical items had shorted and was killing the battery. I will find out this weekend if the recharged battery dies again now they they're out of the car.

With all this newfound strength, there have been some rather melancholy moments. I know I have surgery approaching and I'm getting my ducks in a row to be comfortable and occupied while checked into the hospital.

One of those ducks is my iPod (ptui). I bought it after Jody and I went to Scotland and ran into a fellow using his to cache his digital camera pictures. I found a used one loaded with tons of tunes (over 14,000) but little in the way of music I know best. So, I've gradually loaded my own music onto it to keep me company when I'm in. I keep running across music that really moves me so I wanted to share one that especially speaks to me every time I hear it.

It's called "No Doubt" and it was recorded by Petra. Formerly the gold standard of Christian rock bands, the guys retired the band in 2005. This song was the title track to their album from waaay back in 1995 and it's about enduring, or rather passing those tests of faith that Life pops on us when we're not expecting it. Like rectal cancer. Facing surgery and more chemo and the liklihood of icy biting neuropathy through a Maryland winter, it's as if this song was written for me. (cue tears and Kleenex)

There are times when you feel like you can't go on
There are times when you feel like giving in
And there are times when you feel like you can't try anymore
There are times of trouble in believing
This test of your faith will last
As long as it takes to pass
Till you have no more doubt you'll endure
And your faith will emerge true and pure

No doubt it'll be alright
With God it'll work together for good
No doubt in the end it will be understood
No doubt it'll all work out
With faith He can move any mountain for us
No doubt in the power of Jesus
And after all is done we find out
All we really need to have is no doubt

There's a time to take a reckless leap of faith
There's a time to be cautious and to wait
And there's a way of learning from the past
That this time of trouble won't last
And sometimes we want to think we know
The ways He will choose to make us grow
But it's never the way of our choosing
And we can't always see what He's using

No doubt it'll be alright
With God it'll work together for good
No doubt in the end it will be understood
No doubt it'll all work out
With faith He can move any mountain for us
No doubt in the power of Jesus
And after all is done we find out
All we really need to have is no doubt

There will be winters in the seasons of our soul
With a cold and bitter wind that chills our lives
But our faith can be building a fire
That will warm us till springtime arrives

If you want to hear it and don't mind installing the Rhapsody player, it's track 5 here: http://www.rhapsody.com/petra/nodoubt

I need some tissues now. :')

big fat juicy update

2007-11-02T07:33:00.000-04:00

I owe you guys another post and this time I will publish some pictures. :)

The first few days off the therapies were honestly some of the worst I've had thus far. Without the side effects to, um, soften things up, the oxycodone had free reign to knot me up big time. I return with a pary of Senokot pills and plenty of water but that just gave me ammo for more tears. I got really conscientious of my water and fiber intake after that and marched on through. The rain through the weekend both helped and hurt; it was depressing outside, but the patter of rain on the roof always helps me sleep well. Things are improving, but it's no time to let me guard down. The boys have been especially sensitive to daddy being hurt and Jody caught a sneak snapshot of Hurley giving me love the only way he knows how. :)

Yes, that is some hair on my face. It is not much and probably never will be, but it is more than I've ever had before. You may have to zoom in on the picture but I won't be offended. I've always been a babyface. I forgot to shave the morning after my birthday and again the morning after that. So I let it go. I'm not working so I don't have to look professional (as if I ever do!) so I figured why not. Jody noticed and has decided she won't let me shave it off. She likes it and wants to see how it might grow in.

Jody also booked us a long weekend trip too... to Cancun! She's cutting it very close with her leave balances and may have to take a day or two of unpaid leave courtesy of the FMLA, but we can thankfully afford it and she believes I deserve it. Four nights of all-inclusive pampering at the Westin in Cancun will be a very very welcome escape. In turn, I made appointments with the wound care center at GBMC (to learn about caring for my ileostomy), a pre-surgery check up, and a port flush. I've also got followups with both the radiologist and oncologist in there. The trip will be a nice way to relax before two weeks of business and family visits before I check in for surgery. Remember to come and visit!

Wednesday this week was Halloween and I was feeling pretty strong; strong enough to try for a trip to Skyline Drive. The timing is always bad. If I wait for news stories that the leaves are changing and it looks pretty, that's always too late. Trying for a weekend drive always results in bumper to bumper traffic up there with all the other hopefuls. And then there's the weather. Well, I'd been eying the weather reports and seeing the leaves change here had me figuring the higher altitude and more southern latitude might work in my favor. I'm not working so a weekday trip would be very doable. I called Mom to see if she wanted to go too... hehehehe

As you can see, we hit it pretty perfectly. Traffic was a non-issue, the sky was perfectly clear, and the trees were turning but not quite ready to let go. I also got to take the GTI instead of the Escape so the drive itself was more fun too. :D I packed my small cooler with some water and Gatorades and a big sub sandwich. Mom brought some chips and snacks and we picnic'd just south of the tunnel near the VA 211 crossing. I do admit I pushed it pretty hard that day and Mom took the wheel for the last hour on the way home. However, it was not a trip I could have done two weeks ago nor did I get as wiped out as some daytrips before. I'm feeling better just not 100% yet. Getting out helps though... this weekend I'm hoping to finally see the Punkin Chunkin!

Some have asked if I still want to be on prayer chains and lists and I appreciate all of you. I'm specifically concerned with my skin "down there" still as it's still quite tender. I am also still very anxious about the surgery and recovery coming up. I know I get to be knocked out and just wake up fixed but it is still pretty scary, not to mention all of the possible/probable complications and the recovery time. I can't ask all of you to do this, but I did want to share one thing; one of Jody's coworkers is flying to Israel on what sounds like a pilgrimage. She is going to visit the wailing wall, part of the ancient wall of Jerusalem, and she is going to pray for me there. I am honored and humbled that she would do this for me just as I am honored and humbled by all of you writing and encouraging me. So yes, I would like continued prayers and I promise to pray in thanks for all of you too.

why it's important to remain humble

2007-10-24T08:25:00.001-04:00

You all know how pleased I was with the good news about the dramatic drop in my CEA count. I was also very happy to be in that final "boost" week where the radiation treatment field was finally reduced to just either side of me instead of from my back as well. I was thankful for these things and looking forward to the time in between the therapy and surgery.

Monday afternoon Jody and I met with Dr. Grasso as planned for when the chemo/rad was finished. I'd been doing some research and had some specific questions about his approach and what to expect afterwards. I wanted to know instead of wonder so I asked.

I will not lie; some of the probabilities are unpleasant if not absolutely shocking. I have been pretty upset since then but I am holding onto my faith. It has not failed me yet.

I'm going to lose the better portion of my rectum and an astonishingly large section of my lower colon. Dr. Grasso's plan is to resect back far enough to take out the blood vessels and lymph nodes surrounding/supplying the area including the tumor. It is aggressive, but I believe there will be little to no chance of ever having a problem again. Again, I will not lie. This scares me a lot. I'm looking at what seems to be a quarter of my lower bowel using the illustration Dr. Grasso used to describe this too me.

The resection is going to be limited by the size and shape of my pelvis. Beyond just attaching the healthy sections together in a straight line, he has two techniques that will make up for the lost capacity of the rectum. The one he wants to try is called a J pouch where the rectum is turned back on itself to form a J-shaped area to hold more waste. The bottom of the J becomes the new opening to the rectum and this is a proven method used by lots of surgeons with success. Another is to cut the lowest portion of the new section and stitch it back together sideways making another larger space. The downside to both of these methods will be more urgency and more frequency in trips to the bathroom. There is no getting around that it seems.

Recovery is going to be kinda ugly as I will be wearing an ileostomy bag for most of December. I am hoping the resection will heal in time to lose the bag before Christmas. To my perfect shock, my diet -still- will not matter and I can eat anything I choose. Go figure.

The worst is the risk to my reproductive system. I do not want to be gross nor do I know the biomechanics of the nervous system, but there is a probability that I will not be able to have kids the "normal" way. I may have to go through minor surgery to collect and/or bank my semen because this colon resection may leave my plumbing turned backwards. He is confident I will not lose any ability to have sex with Jody but my ejaculate may wind up in my bladder instead of outside where the little swimmers can try to make a little John or Jody.

Above all else this was the most heartbreaking for me. Jody endured a miscarriage two years ago. For the few days before it happened we were both profoundly moved that we would be parents. This was one thing we both wanted but had given up to God to decide when we were ready. Suddenly, we were ready. Even though we didn't feel prepared, that decision had been made and God thought we were ready. But we weren't and that time was really only to enlighten us both that having a baby was something we both really want. And that we need to be patient for the time to come instead of try to force it upon ourselves at the expense of our relationship or our friends and family. We knew then we would probably need help getting pregnant. Though it has crushed my spirit for a few days now, the reality is we will probably still need help. Just now it will be both of us needing help. Adopting an unwanted child is also still out there and may turn out to be what we are supposed to do nonetheless.

So yeah, my radiation is done and the last of the chemo pills are gone. I'm still hurting but I can now look forward to healing up and getting some strength back. One thing is most clear as well; I've no room to be proud for "surviving" this or any other ability except to lay it all out there and pray for help. This is my test and I know I will pass.

Three point seven, baby!!!

2007-10-19T09:38:00.001-04:00

I had to post again...

I was on the phone with my mom checking on me when I got another call. Mom excused herself and wished me a good day.

On the other line was Dr. Lee, my oncologist. I wished her a good morning and mentioned that I was intending to call her later today to see if the results from my most recent bloodwork had come back. They had and the results were very, very good.

I am not anemic and my kidney and liver functions are normal. Those weren't the factors I was interested in though so I asked about the CEA (CarcinoEmbryonic Antigen) counts. On my mind was the last number I'd heard which was 19; a borderline indication that metastatic disease was on the move... cancer spreading, in layman's terms. Seriously sick people have CEA counts above 100 while normal, healthy people count only 1 or 2.

Well, as of this past Tuesday my CEA count is down to 3.7.

THREE POINT SEVEN!

Hallelujah!!!

cast your vote

2007-10-19T04:11:00.000-04:00

Yeah, it's 4am and I'm posting, but I've been kept awake this night and I just need something to get my mind out of the bathroom. Yonder computer will entertain me with more BMW tidbits and I will surf to some electric vehicle sites starting with this one and dream about an electric car that actually performs like a car. It would be awesome to carve corners at Summit Point making no noises but tires squealing...

On to the subject...

Now that all this hubbub has died down to a dull roar there is some time to relax. I will have some regular blood checks to do between the end of whacking the tumor but before the surgery to remove it. Otherwise, I'll be home just getting my strength back until then. Since surgery will most definitely lay me up even longer, we've toyed with taking a vacation. Jody and I are fortunate enough to be able to afford to take a week off and get away and we are thankful for it.

Surgery will be the week after Thanksgiving and we anticipate having family and friends the week of Thanksgiving so we're looking to get away before then.

Two destinations keep popping up largely because they were two of the most relaxing places we'd ever been; Isla Mujeres in Mexico, and taking another cruise.

In reverse, a cruise would be great again because this time we'd go just for the ship. No attempts to adventure anywhere off the ship, just us and the lounge chairs and no effort to eat or drink. One possibility is cruising with a line not so popular with kids. One minor irritation was the level of noise on the cruise we took back in April so fewer kids would be nice. That's also a minus because we did just take a cruise for our anniversary back in April. But a big plus would be the comfort level on a ship which just about guarantees a relaxing trip.

Isla Mujeres was the island Jody and I visited on our last vacation as boyfriend and girlfriend; we came home engaged to be married. :D A return trip could be relatively stress free but not as effortlessly as a cruise. Jody would be put upon to do all of the speaking (No hablo mucho Español) and the trek to the island would definitely require all of my energy if we were to go today. I'd be wiped out by the time we got there unless I get a lot more strength back soon. We'll go back there in the future nonetheless so trying to go just for this time before surgery isn't a dealbreaker. It would be great though just sitting under a palapa all day. Just imagining it now is soothing away a little of the last few months. :sigh:

Feel free to post alternatives. I want to be warm and relaxed and preferably close to a pool or ocean without a care in the world but hopefully able to order a girly-drink without Jody's assistance as an interpreter.

:thmp thmp thmp: Is this thing on?

2007-10-16T15:32:00.000-04:00

Good afternoon, all. I am still alive though I wish I could sleep off the rest of this. Birthday Friday was a doozie that I should have begged off of but I didn't want to disappoint my family.

We went to one of my favorite Mexican places; El Azteca. It took some time to get inside which is always a sign of good cooking, but I had to bail to get a donut and a coffee because I was getting shaky. Back home I was so tired but there were gifts to open and I figured I could rest late on Saturday.

Bill got me a cool pocket 8/16-bit game with little cartridges filled with old arcade games. Biggest surprise there was a DigDug II that I never knew existed. Most fun so far has been Donkey Kong Jr. Joanie and Josh got me Oblivion for the Xbox, but I'm going to demo it first because I think it is an RPG. Mom and Dad got me shop manuals for my BMW from Haynes and Chilton which I hope will get put to good use soon (please let the chemo and radiation wear off fast!). Jody overloaded me with movies, a quiz book, an XBox cheat book (tsk tsk), and an extra Xbox controller. (I had to download Bomberman from Live so we can play each other now.) The last gift was a quilt Jody had made with friends after sending patches all over the place to have friends and family personalize to help me get better. I was really touched and I will definitely take it with me to the hospital but I was so tired when I opened it that I couldn't really express my thanks. I was really really out of it.

Truth be told I was exhausted before we went out Saturday evening and I haven't really recovered since. I pushed it going out with Joanie on Saturday to pick apples and though I was feeling good out in the sun, I paid for both days the rest of the weekend and through today. I'm burned up and short-tempered and I know I've lost it over the smallest and stupidest things. For that I am sorry and blaming the drugs or the radiation is only an excuse. I just feel like crap all over and, even when asked, there isn't anything I can think of that will make me feel better for very long at all. I just want to be finished already. That or unconscious for the rest of the year until the surgery is done. Someone's old joke about being sick and tired of being sick and tired comes to mind but I can't remember whose it was or if I'm even remembering it right.

happyish birthday

2007-10-12T15:17:00.000-04:00

Yes, today is my birthday. I looked back over the blog and saw that I was hoping today would be the last of the chemo and radiation therapy. Well, it will be a week from today and all in all I am not a complete wreck as I thought I might be.

This had been a rough week until once again I took charge (with a great deal of help from Mom) and went out of my way to get the liquid Oxycodone Dr. Cheston had prescribed/suggested/hoped/gambled would help me with the intense pain trips to the throne had become. She instructed me to take the stuff about half an hour before getting out of bed for my morning edicts to the kindgom or half an hour before I felt I'd be so royally seated. Though it had taken some rational yet insistent argument with the local Kaiser pharmacist, a hundred miles round trip later through the worst DC's traffic system could muster, I had my little bottle of the next thing to try and was praying it would work.

Lo and behold it did. It's no business as usual by any stretch, but the edge is very dull now and I am not leaving in tears or shaking so hard that I need sleep. Because the stuff takes effect so quickly and is essentially a substitute for one of the Oxycodone pills, I have backed the pills down by one and will ween myself off of them with purpose when therapy does come to an end. They are addictive and though I do not feel myself wanting for them, I do want to make sure I don't.

This all happened just in time for Joanie's visit from Idaho. She arrived Wednesday night very late and has been filling in for Mom since yesterday afternoon once she got over a little jet lag. The morning liquid Oxy does me so well I do not need to immediately rush home after radiation to get some breakfast... though that is still a better start to my day than not getting any! ;)

Today Joanie took me in for the final full-strength radiation exposure. I learned earlier this week that the final week would be tapered off nice and easy. I felt bad having broken down in the doctors office when I just couldn't get them to adjust the field, but the news about the last week going to be lessened did help steel me for these last four days. They're done now.

Joanie and I celebrated with a little shopping and a realization that brick and mortar stores can sometimes just plain suck. I've wanted some new hiking shoes and I prefer to try them on to see that they look nice on my feet and fit well. Price is a not a major factor, but I don't even try on shoes that cost too much. There is no practical reason my mind accepts for such wildly different prices for shoes. When I thought I'd found a pair today for a reasonable price (what I now consider "reasonable" is also rather nutty) I got an immediate runaround from some English as a second language clerk who ran off with the shoes to get another box that said they shoes were nearly twice what the first box said. Funk that.

Joanie had been homesick for Chik-fil-A but another ESL below average student couldn't be bothered long enough to finish taking our order before hooting and hollering behind us for numba seex and numba toooo. Maybe it's the chemo or maybe it's hanging around all the baby boomers but man have I developed a sincerely bad case of please speak English-itis. Service settings really do demand clear communications, ya know?

My birthday wishes? A tuchus that doesn't keep me warm at night, adjustable camber plates, swaybars, and R888's for the BMW, and a normal life again. Or maybe that 1:8 scale Lego Ferrari F1 car... to go with the 1:10 scale one I built last year. :D

just a little bit more to go

2007-10-10T12:00:00.000-04:00

I feel bad that I haven't made a post in a week but I have really hit the skids. That last bit of fight I had was all that was left and, in the end, I didn't get what I wanted. Instead, I've got more drugs to handle the side effects and they are doing more and more to make me less of me than I want, despite trying to be conservative and scientific in how I watch myself taking them.

It seems the only thing I have left with enough oomph to squeeze out any more adrenaline is anger. When I get mad, I can do anything. I crash hard for it, but I get it done. This week it will be getting a prescription filled that poor Jody got chased from one pharmacy to another and could not get filled. I'm going back to the Kaiser pharmacist and if I get one breath of how they don't want to order it because it's liquid and they'll get stuck with it, I will go mental on them. Mental as in are you using your brains back there? What do I care if you have to order it? Order it. What do I care if you get stuck with the bottle after giving me what I've been prescribed? Are my premiums NOT already covering these costs? Your paycheck? The lovely building we're in? The overhead expenses of drugs going bad on your shelves? Isn't there a board of directors and shareholders making a profit off my premiums?

Order the damned stuff.

I wouldn't be so angry except for the fact that I'm in pretty much constant pain and have not yet been able to get out of it. I have seven more days of radiation left and then I can start feeling hopeful. I've been in tears every day for a week now for one thing or another though mostly it's just that one thing. Last week I couldn't understand why people would do illegal drugs; the kind of stuff that scrambles your brain into seeing things but this week I'll take it... or at least something to knock me out until the radiation effects calm down.

I am trying hard to hold on. I am so fried I just want it to stop.

:boom:

2007-10-03T18:24:00.000-04:00

Today was the day I'd had enough. I've been biting my tongue and laughing off a lot lately so today I fought back.

Yesterday was Doctor Day for the week and I repeated my request to see if the radiation field cannot be reduced. Dr. Linder said it was possible but not recommended for the same reasons Dr. Cheston had said it wasn't possible and not recommended. At this point in my treatment, the side effects are having a greatly increasing negative impact on my quality of life. Dr. Linder said it could be a week before I'd notice any change but also said the effects would last a few weeks after treatment was finished. I was told at the beginning that I'd be monitored and my treatment would be adjusted so today I'm cashing that chip in. I've requested that both doctors consult with one another and consider altering my exposure field so that I can start feeling better in a week instead of in four weeks. The tumor is most definitely shrinking and I feel it is not out of bounds to ask them to refocus the energy to keep hitting it and as little else as they can.

Today I was supposed to get a biopsy taken of whatever the little shadow was in my right lung on the PET scan. Emphasis on was.

Weeks ago the liver biopsy had come back negative and Dr. Lee wanted me to get my lung checked. I was told this one would be more conclusive because the surgeon would use a scope to actually look at what he/she was going to sample. The liver biopsy had been guided by an active CT scan but the surgeon then had admitted in his report that he had seen no lesions on my liver during the scan and had effectively been sampling me blind. When it came to light today that he (same surgeon) would be doing -another- CT-guided scan to sample my lung, I panicked.

I protested immediately and said I thought I was going to be anesthetized and that the biopsy would actually be taken only from a lesion that could be seen with the surgeon's eyes. "No, that;s not us. We don't do that here." Well then, I'm not doing this here either.

For starters, I was already against having this second biopsy done. It was based upon a very faint little blue blob in my right lung nowhere near as brightly shown as what my liver had been. Regardless of the results of the biopsy, my therapy would not change. I am already taking chemo as if I have stage 4 cancer so that any mets disease would be poisoned and killed before it can get going. A negative result would not reduce my chemo nor shorten my radiation and chemo regimen. A positive result won't increase them either. I will have to be PET scanned after surgery in any event. This is not to mention the hassle of fasting for another day while already weak and having to suck down chemo to make me even weaker without any food for fuel to just stay awake or walk into the hospital. This biposy was a waste of my time, a waste of my insurance benefits, a waste of the surgeon's time, and too late in my regimen to make a difference.

I apologized to the surgeon, but I told him I had no confidence he would find anything. If the cought that started this whole mess had been caused by mets in my right lung, guess what? It's gone now. I was not interested in laying awake through another blindfolded pin the tail on the Sco procedure.

Meanwhile, I now know I will be checking in to GBMC for surgery on Thursday, November 29th. That most likely keeps me in the hospital though the weekend and probably the better half of the first week of December. I also believe the surgery with be laproscopic and not terribly invasive. I will make absolutely sure of this with Dr. Grasso beforehand so that I am not surprised again like I was today.

silly rabbit...

2007-09-30T15:31:00.001-04:00

So the FiOS guy came today and all is right with the world. The weather and traffic widgets are totally awesome though I already have some suggestions for improving them. I watched too many sci-fi shows as a child.

I was also able to very easily defeat the built-in wireless that the technician said would be impossible. Tambien, extending the "router" to my existing home network was a snap; another impossible task I couldn't do. Honestly, I think I will ask Verizon if they will replace their over-featured device with a simple modem. That's all I need it to do and all I have it doing right now... even though they said it wouldn't do it. :ahem:

I am feeling pretty good though I will drop to my knees tomorrow and beg for the radiation field to be adjusted slightly. I understand they want to shoot all of the tumor and then some, but the then some is still leaving me shaking and in tears. I have upped my oxycodone with no ill effects, but I will probably need a refill before this is over with. The round the clock pain has been diminished this way and through all of the prayers you guys have been sending up with me. I really think a small adjustment from the radiologist is not out of the question.

Meanwhile, the FiOS life is good. I need to test drive the DVR to make sure it records and then make sure it will play back on both itself and the other tuner box up in the bedroom. I know some do not like the TV guide, bu I think it looks great (esp. compared to Comcast' 8-bit low res graphics with half-cooked program descriptions). I also need to program the Harmony remote to drive the Verizon box the way it drove the Comcast box. That's the last thing on the list now that the network is hunky dory. The speed is great too... I ordered the lowest bandwidth package and it is every bit as fast as Comcast. I sooooo cannot wait to hand in those boxes and close out account tomorrow. :sigh: