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
Sunday, April 18, 2010
Saturday, March 20, 2010
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.
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.
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.
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.
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
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!!!
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 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. ;)
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. ;)
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... ;)
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?
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?
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
desperation
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.
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.
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. :'(
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.
To borrow a meme, FFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUU!!!!!!!!
I just got an invoice for outstanding leftover payments to my oncologist. Though there's a lot from Kaiser, they're a tiny fraction of the pocket portion Aetna has left me with. It appears to be just the first quarter of the year... and may allude to thousand-dollar copays, per visit, for the Avastin... that I get every other week... three moths worth aren't on this invoice...
Attack of the Clones is on television, sucking.
The NetApp at work is expressing that same firmware bug from back when I first started; don't know how to/haven't had a chance to fix it.
And it's now raining so I can't take my doggies to the park to let any one of us blow off some steam.
To borrow a meme, FFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUU!!!!!!!!
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.
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. ;)
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.
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.
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