Sunday, November 22, 2009

it's still raining... a reminder

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.

Sunday, October 18, 2009

a dare...

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.

Thursday, October 8, 2009

lemme blog atcha

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

Saturday, September 26, 2009

Well I won't do that again...

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!!!

Monday, September 14, 2009

A taste for adventure

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. ;)

Wednesday, September 9, 2009

knock on wood

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. ;)

Wednesday, September 2, 2009

ice cream

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. ;)

Sunday, August 30, 2009

August... where did the time go?

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... ;)

Thursday, August 13, 2009

back from the gastrointerologist

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?

Wednesday, July 29, 2009

thematic ending

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?

Friday, July 24, 2009


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.

Wednesday, July 8, 2009

some explanation

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.

Tuesday, July 7, 2009

it gets worse

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. :'(

Wednesday, July 1, 2009

Crap on a stick.

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.


Wednesday, June 3, 2009

I miss you, Brie.

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. :')

Thursday, May 21, 2009

fingers crossed

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.

Wednesday, May 13, 2009

Another milestone

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. ;)

Friday, April 24, 2009

:blam!: NIH fires back

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.

Wednesday, April 15, 2009


'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.

Tuesday, March 31, 2009

no test more than we cannot pass

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

Thursday, March 26, 2009

Did anyone get the plate off that truck?

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. :'(

Thursday, February 19, 2009

insert sound of balloon popping

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. :'(

Friday, February 6, 2009

100th post...

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. :]

Thursday, January 29, 2009

:D part deux

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...

Tuesday, January 27, 2009


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!

Thursday, January 22, 2009

do something

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!

Wednesday, January 7, 2009

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

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.

Thursday, January 1, 2009

Happy New Year!

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: