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!

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

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...

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

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...

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

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. ;)