Wednesday, January 30, 2008

Round Two...

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

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

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

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

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

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

Wednesday, January 23, 2008

When fighting clowns, go for the juggler.

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

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

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

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

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

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


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

Wednesday, January 16, 2008

mo bling

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

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

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

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

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

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

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

Monday, January 14, 2008

bling bling

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

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

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

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

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

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

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

Monday, January 7, 2008

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

A little aliteration for the New Year. :)

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

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

In Dave's Porsche.

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

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

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

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

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

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

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

Tuesday, January 1, 2008

nothing changes on New Years' Day

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

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

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

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

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

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

Then I got sick.

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

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

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

As long as I can hold on.

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

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

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

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