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. ;)

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. ;)

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. ;)

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... ;)

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?

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?