Saturday, July 31, 2010

1 down, 5 to go ...

Another late-night posting ...

Had my first post-surgery chemo treatment today. Went to the hospital, made my way to chemo infusion room and sat in the chair for three hours. In addition to the two hours it took to give me the oxaliplatin, they gave me some anti-nauseau drugs that took about half an hour to put in. (They're still using my chest port.) The whole session was pretty boring actually - there were hardly any other patients in the room and the place was quite dead. The green boa lady was there for a bit though. She was wearing a tiara this time. My nurse told me she always dresses up. One time she came in wearing a full Hawaiian outfit because she had a chemo session when she had supposed to be on a trip to Hawaii that she booked before she was diagnoses. What a great spirit. I hope she's kicking ass.

So with very few people in the infusion room, the radio was pretty much the only source of noise. And what should come on? "Everybody hurts" by REM. Are you kidding? People are sitting there getting chemo to fight cancer, a disease that is a killer, and one of the most depressing songs written in the past 30 years comes on the radio. I said to the nurses it was a good thing the windows can't open (we were on the 6th floor) or otherwise I might have consider jumping.

"Everybody hurts"? During chemo? I mean, c'mon ...

So, those neuropathy side effects of oxaliplatin I've been talking about? Well, there's two aspects to it. First, there's acute neuropathy, which sets in immediately after treatment and fades away after a few days. And then there's long-term neuropathy, which is, as you might expect, long-term (lasting weeks, months or years after chemo). How immediate is immediate? We're talking right away. I drove straight home from the hospital to get some food so I could take the Xeloda pills, and the gulp of quasi-cold water I used to wash the pills down set my jaw a burnin'. It was like some was running electrical current through all my jaw muscles. It was painful enough to not want to take another sip, but not excruciating or everything. So now I have to let all my food warm up to room temperature before I eat for the first few days after a chemo session. The list of things I need to pay attention to and watch out for seems to keep growing and growing, and I wonder how I to keep track of it all, but this one, should I forget, I'll get a quick, sharp reminder to not come into contact with anything cold.

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Haven't touched the pain meds since Tuesday. Fatigue spells are still a pain in the ass though. They can wipe me out for a good portion of the day. Most of the time they hit in the early/mid afternoon and I head home, but lately I've been just trying to ride it out. Sometimes it'll pass if I go out to the park and lay down in the lawn for a bit. (Yes, I can do that. I work a block from a park. Have to deal with the homeless begging for cash (can't they see I'm trying to sleep?) or the cops asking if you're OK (can't they see that I'm not dressed like a homeless person?)

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Back pain from last Friday's adventure is pretty much gone. The chiro and massage sessons worked wonders for me as always. The massage therapist exhibited some of the same ignorance that others at work have shown about ostomies (not judging, just pointing out that people don't know what having a stoma really entails). During the massage, she said that she would stay away from the ostomy appliance so that she "wouldn't touch the tube". I had to laugh. Sorry, no tube. Just my large intestine coming straight out of my stomach.

Gonna try some light physical activity tomorrow. I may even hop on my bike and try riding it around the block to see how the hindside does. It's probably not going to work out very well, but I need to know where I'm at because I am just chomping at the bit to get on my road bike and start riding again. It's killing me. Probably good that it does hurt, because if it doesn't, I'll be tempted to jump on the road bike and go out to Sauvie Island for a ride (which is bound to be a really bad idea).

This whole recovery process has taught (retaught) me some things about myself. I think the biggest thing is that I'm used to "functioning at a very high level" (my doctor's words), and it's driving me nuts not being able to work or play at anywhere near the level that I am used to or want to. And, I'm learning that I just can't push it. In my moments of feeling good (which usually occur right about an hour after popping some vicadin) I'd start setting up social get togethers and visits with friends and then later in the week, when I was battling fatigue, I'd have to cancel on people. Which is bad form. So, I have to take it slow. Baby steps. I hate baby steps. I want to take leaps and bounds.

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With my health improving, I'm starting to think of how to answer the "what now?" question that cancer survivors ask themselves after finishing treatment. It's a good question, and I'll have a multi-faceted answer for it (what kind of athletic goals do I want to set for myself to show I'm back (ironman, marathon, climb a mountain), career change, move to another city, etc. etc.), but not any time soon. I think cancer patients are too busy fighting the good fight to *REALLY* think about that question. I expect that only when I'm back a full strength and really return to my pre-cancer routine that I'll appreciate the changes that I need to and want to change in light of having had this disease. I mean, there are already changes in my attitude toward some things, like work (it matters less to me) and, I think, a more general laid back attitude toward everything. Interestingly, I've noticed that I'm now a normal-speed walker on the sidewalks. Before cancer, I was always racing everywhere and passing everyone. I didn't want to waste any time getting where I needed to go. It was go, go, go. Now, even when I think I'm making good time, everyone passes me. Maybe what I think of as being "rushed" is now a good normal pace, or, maybe I just can't move that fast right now. I dunno ... I just noticed that this past week and thought it was interesting.

Thursday, July 29, 2010

Drug free living

Time to dance with the devil again - tomorrow I start post-surgery chemo. Got my chemo pills in the mail today (mailed overnight in very discreet packaging from Walgreen's Special Pharmacy (their black ops division)). It seemed like quite a large box for two pill containers, but it also contained all sorts marketing material for Xeloda and a nice neon green neoprene carrying case with XELODA emblazened on it that I'm sure I'll never use. The box also contained some udder cream. Yes, udder cream. The first thing I thought to myself was, "the stuff for cows?" And the labeled assured me that yes, that the product was "developed for use on dairy cows." Okay ... So I read the material and apparently udder cream helps prevent/treat a lovely side effect of Xeloda known as hand-foot disease. Apparently, small amounts of the drug break through the capillaries in your hands and feet, leak to the skin and cause really bad dryness and chapping. It can be a bit painful if left unchecked, and the pictures they included in the materials were sufficiently scary enough to encourage me to pay attention to this. I'll add it to the list.

I'm glad they included instructions on what the udder cream was for, and that I actually *read* the literature (I don't always do that), because, left to my own devices, I could have seen myself trying to figure out what to do with the cream, and applying it to my nipples. (Doug to himself in front of mirror: "Well, I *know* they gave me this stuff for a reason .... and it *is* udder cream ... but I really don't see how this is going to help get rid of the cancer ... oh hell, here goes.")

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In other news, I am pleased to report that yesterday, eight weeks after surgery, was the first day that didn't take any vicadin to deal with pain. Of course, smoking copious amount of medical marijuana may have had something to do with that.

Saturday, July 24, 2010

Coast

Just got back from the coast. It was perfect Doug time. Tahoe and I just walked up and down the coast a bit, I chatted on the phone with a good friend for about an hour, and then watched the sunset. The weather was just perfect - 20 degrees cooler than Portland, and the natural beauty of it all just recharged the soul. It was just what I needed.

Tahoe chilling out on the beach ...

Chemo

Saw my chemo doc yesterday. We're going ahead with the full FOLFOX cocktail starting next week. I want to go forward with the full standard course of treatment to kill off any cancer that's still floating around in my body. I can't half-ass it know, even though I had a complete pathological response. I don't want to deal with this popping up again somewhere else a few years later. If it did, and I had chosen to back off on the back-end chemo, I'd always be left wondering. So, no regrets. The regiment is six, three-week cycles, so that takes me to Thanksgiving weekend. It's going to be total drag I'm sure living with the side effects of chemo for four whole stinking months, but it's the final act in my cancer treatment, so I'm eager to get started. As I mentioned before, I'll be taking the pill form of the 5-FU drug. I'll take that daily for two weeks, then stop for a week. For the oxaliplatin, I'll go in to get a 2 hour infusion of the drug once every three weeks.

When I was in the doctor's office yesterday, there was a woman in her 50s who was getting her infusion who, just from looking at her, I knew had a great attitude toward battling cancer. She was wearing royal blue silk pajamas, a deep green feather boa, and ruby red slippers. It was great. She was finishing up just as I was sitting down (I had to get my port flushed) and she was positive as hell. It was great to see. Looking around the infusion room can be kind of a bummer sometimes.

--

My recovery is continuing. Still battling fatigue on occasion, but it's getting less and less. And, I still get sore after sitting for a bit. But, I'm tapering off the pain meds. I still haven't gone a whole day pill-free, but I'm down to 1-2 pills a day. It's usually after sitting for awhile. As far as work, I'm still easing into things and doing what I can. Was about one-quarter time two weeks ago and was about 1/2 time this past week. Everyone at work is still awesome about things and are encouraging me to ease back into things as my health allows.

The abdomen band I purchased seems to be muzzling my stoma pretty well. I'd say it eliminates about 95% of the noise. I'm very, very happy with this. It makes a *huge* difference in my day. Also, when I have to go to the restroom, I just pop down to another floor where nobody knows me. Everyone at work knows I've had cancer surgery, most of them know what type of cancer I have/had and some of the know what the ramifications of the surgery are (i.e., you get a bag). Still, this doesn't mean that guys I work with need to be reminded of this if they're in a stall next to me when I'm taking care of business. The ripping off of the old bag, the rustling of a plastic bag as you bag up the old bag, the tearing back of the adhesive of the new bag ... just all noises that you don't expect to hear from someone going #2.

Besides, I like the idea of getting a guy on another floor to totally wondering what exactly is going on the stall next door. "What is that guy doing? I hear the toilet paper roll rolling and toilet paper being wiped and bunched up, but his feet are facing TOWARD the toilet? What the hell?!?!" And then to come out of the stall with a (full) plastic bag (a la Borat) and fling it in the garbage? Yeah, that'd draw a stare.

Mentally, I'm getting used to the daily management of things. I'm still pretty sensitive to when I think people can see it, which controls what I wear sometimes (it's harder to see with looser and darker shirts) and when the stoma is "active". Otherwise, I don't think about it much, which is nice.

Oh, got my insurance bill from the medical supply company for ostomy supplies. It was $440+ for a *one month supply*! Sure, my insurance is picking it up 100%, but that's pretty outrageous. That comes to $4-5 per "piece". I'm sure these things are made in China for pennies.

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It's going to be hot here today - mid '90s. Had some grand ideas about where I would road trip to (Redwoods - 9h away, Mt. Rainier, 3.5h; Olympics - 3.5h; Bend - 3.5h), but i think I'm just going to go to the coast to beat the heat (along with everyone else). I like it there, Tahoe likes it there, and it's only a 75 min drive. Gotta love living in the Northwest. Mountains, coast, rivers - so many options, all within a short drive.

Wednesday, July 21, 2010

Chalkbot

For those of you who haven't been watching the Tour de France on TV, there's a "chalkbot" that has been spraying messages on the roads that have been entered by people at the Livestrong website (http://www.livestrong.org/chalkbot). I saw some of them posted on the Livestrong Facebook page and found this one particularly inspiring:





















I have it taped to my computer monitor.

There are thousands of messages that have been submitted (haven't submitted one myself yet), but you can find more than have been printed out here ...

http://www.facebook.com/#!/album.php?aid=187817&id=6195089915&ref=mf

Tuesday, July 20, 2010

Easy come easy go

So I was feeling all gung ho and cocky with not having any bouts of fatigue the past few days so I put in a full day of work - at my desk around 8:30P and lasted until I left a going-away happy hour for a colleague at 6:00P. I paid the price for that one - I was totally spent when I got home. I immediately crashed, woke up an hour later, walked the dog while still feeling very fatigued and am now unsuccessfully trying to get to sleep.

One of the nurses called up from the hospital to check up on me today. I mentioned my fatigue problems and she said to have my chemo doc check for anemia. She said if you lose a lot of blood during sugery (which I did) this can happen. Personally, I doubt it, but I'll bring it up. Maybe I'm turning into a vampire and I need to start feasting on animal blood.

Monday, July 19, 2010

Some sense of normalcy

Tomorrow morning the last of my relatives who came out to visit me to help me through recovering from surgery are leaving. I'm tremendously thankful to all of them for taking the time to come out and help me. Really. It made everything a million times easier. I'm getting closer and closer to getting back to being Doug again, which is great. Today was another day without any fatigue spells and I was able to sit in my office for a decent length of time.

So, as I'm getting more and more of strength back and am returning to "real life" more and more each day, my spirits are lifting up a bit. However, the period of improving health is going to come to quick end. I see my chemo doc this Friday and it's likely that we're going to start chemo the following week. So, I'm looking at this weekend as my last "healthy" one for awhile. And, me being me, I'm feeling the pressure to make the most of it and get out and DO something. Unfortunately, I don't think I'll be going on any long bike rides, like I did in the weekends leading up to surgery, but I whatever I decide on doing, I'll try to get some physical activity in. Maybe a short hike in the gorge. I hiked up to the top of Multnomah Falls (~3.5 miles round trip, ~ 500' gain) yesterday with my out of town guests yesterday and I felt pretty good. But, I can't afford to push it. I'll see if I can't find some friends who are willing to go on an easy hike somewhere and make the most of it.

Saturday, July 17, 2010

Coasting along

I have more family visiting me at the moment. My birth-Mom and her aunt. They arrived Thursday and are leaving early Tuesday morning. Thankfully, they're staying at a friend's apartment that is currently not being used, so I'm able to keep my apartment to myself. There's just no way I could tolerate more visitors making an extended stay in my small apartment. I think it's going to be awhile before I can tolerate guests staying in my apartment for more than a weekend. Can't wait to get out of this damn apartment and buy a place of my own. The plan was to have this place for only a year, but events have conspired to keep my here much longer than I originally planned.

We had a pretty good day today - spent most of it at the Oregon coast. What was great is that I was able to drive there and back without too much of a problem. The mega-sit pad helped things, but I'll take this as a sign that things are progressing along. (Still wasn't able to make it through the day without pain killers though.) Plus, I got a decent cardio workout in at the gym.

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My plans for returning to work this past week didn't really pan out. I only made it in three days, and worked maybe one full days worth of work total. It was difficult for me to sit for more than a short period of time and I was having serious fatigue spells. I don't know what it is? Nutrition? Lingering effects of general anesthesia / chemo? Whatever it is, it can be a bit debilitating. Just completely wipes me out. We'll see how next week goes.

And, I may have a solution to the whole farting nonsense. I bought a band that you can wear around your waist that women use during pregnancy for back support. It wears like a cumberbund and pushes down on the stoma enough that there's no noise when gas is released. I've only been trying this for two days, but this looks promising. Some other changes to the whole bag setup were made by my nurse, so that may be helping out things too. We'll see how it goes.

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This coming Friday I visit the chemo doc to decide on what I'm going to do about chemo. I haven't done a lick of research since I saw him last and frankly, I don't think I'm going to do any. I just don't have the desire to do the research. Seeing as I'm going through all this nonsense to wipe out the cancer in this initial shot, I figure let's just go ahead with the full monty. Let's zap this stuff with everything we've got so that it doesn't come back again. We'll see.

Sunday, July 11, 2010

Exercise

Made it to the gym a couple of times over the weekend! Was able to do some light cardio (30 mins, elliptical, heart rate ~ 130-140 bpm) without much problem. Strength was fine and moving around wasn't painful. Felt for a bit like I was about to push things from a cardiovascular (more respiratory than anything) standpoint, so I backed off a bit, but other than that, no problem. It was good to get the blood flowing again. I've read a few studies that say that cancer patients, even more so than the general population, need to exercise to keep cancer at bay. Rectal cancer patients in particular. They say I need to exercise five times / week for a total of at least 2.5 hours. That'll be a challenge to develop into a habit, but I'm game. Before my diagnosis, when work got busy, the two things that were always the first to go south were my eating and exercise habits. Basically, I would just eat what convenient and wouldn't exercise much.

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Speaking of work, I went into work last Thursday for an all-attorney meeting and got applause from the rest from my coworkers when I walked into the conference room. It was a kind gesture. It was good to be back.

While the meeting was going on, I was incredibly worried that my stoma would get noisy and rip a big fart. I kept my hand over my stoma for the first few minutes, but this was awkward, so I gave that up. A few minutes later, sure enough, my stoma let one fly. I don't know how loud it was, but to me, it was like a bomb went off. The guy to my left gave me a quick look, and I'm sure at least a good dozen or so people heard it. I walked out of the meeting five minutes later because I was so concerned it would happen again. I went to my office, shut the door, and over the remainder of the meeting hour, my stoma ripped off a whole handful of farts.

So, this is another lovely "side effect" of cancer that I have to deal. Not only do I have a bag, but I've got a noisy stoma. There's all sorts of information out there on how to deal with this - eat foods that don't generate gas, chew your food thoroughly, blah, blah, blah. The food thing sounds easy, but all the healthy foods that I'm supposed to be eating lots of (i.e., fruits, veggies, dairy) are all foods that create lots of gas. And I'm not giving up the healthy foods. Soooo, right now I'm taking gas-x with every meal to see if that works. So far, it seems to be helping. If I do happen to rip one, I can always try to blame it on the guy next to me, pretend it's my stomach rumbling (doubt that'll fly), or (and I love this one) pretend it's a ringtone and pull out my phone. There's some belts out there that look like cumberbunds that wrap around the bag and may act to muffle noises a bit. As long as I can get the noises to sound like stomach gurgling or something, I'll be fine with this. Maybe when I'm finally able to irrigate, this won't happen ...

As I was telling people about my "stoma fart" concerns, a few of my friends seemed confused about the whole thing. They didn't understand where the farting noise was coming from (the bag? a tube coming out of my body?). It made total sense to me, but colostomies aren't topics of every day conversion, so it makes sense that there's some mystery here. Explaining exactly how my new front-side exhaust post works cleared things up for them and I thought do the same for you fine readers.

So, having an APR procedure performed means they take out your rectum and a good portion of the colon. Your solid waste has to exit the body *somewhere*, so what they do is they bring the new end of the colon up through the abdominal wall and through the skin. The end of the large intestine is turned back in on itself (like creating a cuff) and sutured to the abdominal wall. So, what I have sticking out of me is the inside of the end of my large intestine. It's a little red nub and looks like a cherry tomato, like so:














Here's a random full-body picture I pulled off the web to give a better of idea of how big this is and where it's placed:















Sure, it looks a bit alien, but overall, it's not *that* big of a feature to deal with, at least not physically. Mentally ... that's another issue.

Put simply, the gas passing through the stoma can make a farting sound just like as if it were being expelled through the orifice where god intended gas to leave the body. A bag is worn over the stoma to collect stool, but the bag has nothing to do with the noise that can be created by a stoma. Put a plastic bag over your mouth and make a farting noise. Does the bag damped or change the sound? No, it doesn't. Does wearing pants muffling farting noises completely? No. Same with a colostomy bag. The bag collects the gas, but doesn't change the sound at all. So, there you go. Probably too much information for some of you, but there you have it.

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Healing continues. Physically, I still can get pretty exhausted at times, and sitting is still painful. Whenever I know I need to sit, I pop a few pain pills in advance and that really helps things. I'm planning on returning to work on a limited basis tomorrow, so this will be interested. I have a monster sit pad from the nurse that should help things out, but we'll see.

Mentally, generally I'm doing OK, but I have my ups and downs. There are times when I get so frustrated and angry at myself and others for being in this position. I think of what I and others could have done to prevent this (I'll say more about this in another post). I think of all the difficulties I'll have dealing with this in everyday situations and how to bring this topic up when I start dating someone. Then there are times, like when I'm watching the Tour de France, and I get all excited about getting back out there on my bike (or on the trail, on the mountain, etc.) and returning to all the activities I enjoy doing. And how I may set out to do some things that I've always thought about doing like running a marathon or doing a triathlon, to prove to myself that cancer can't keep me doing and that I'm going to come back stronger than I was before, both physically and mentally.

But, it's early. I only had the surgery 5 1/2 weeks ago. And, I've come light years since those eight days in the hospital (which already seem like months ago) and in another 5 1/2 weeks, I'm sure things will be much, much better than they are now.

I can't wait.

Friday, July 2, 2010

Looking around the corner

Been a few days since I've posted. Not because I haven't had anything to say, rather, because I haven't had a tool to allow me to do so. I've been without a computer. I had *two* laptops when I last blogged, but I returned the 13" MacBook Pro I had just bought (too small) and I seem to have killed my six-year old Dell when I slammed it closed during a bout of frustration with being cooped up in my apartment. (Not sure what "unmountable_boot_drive" error means, but it can't be fun). I bought the 15" MacBook Pro yesterday and now I have my on-line voice again.

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Since I last blogged, my Mom's tour of duty with me ended and my brother is now holding the visiting family member position. I didn't go long without. My Mom left the apartment at 6AM on Wednesday and by noon that day, my brother and I were playing video games on the big screen. (In fact, we're still playing vids. Right now, he's playing Legends of Wrestlemania. It's awesome.) He's here until the 8th.

A deep, heartful thanks to my Mom for helping out and putting up with me for a month. She did a great job with walking Tahoe, doing my shopping, laudry and cleaning when I was incapable of these things myself. Most importantly, she did a great job of giving me space and letting me have my "Doug time". Frankly, I'm amazed we pulled off co-habiting for a month in my small apartment. She really worked hard to make it happen.

I immediately realized how much work she had done (or how lazy I had gotten) when I started doing my chores myself. Before Derek showed up, I did some laundry, some dishes, walked the dog, made myself breakfast and was complaining to myself at how much work this all was. But, it's good for me. I've gotten soft. I need to get exercise so I can continue to heal.

And, healing is going OK. If I haven't completely turned the corner, I'm at least looking around it. Definite, but modest progress is being made. I'm definitely in much less pain than I was a week ago, although I'm still popping the pain killers after a long walk. But, I'm down to 2-4/day, which is progress. I'm slowly building up my stamina and strength. I think my fatigue had/has to do with the drug (fatigue is a side effect of vicadin) and my lack of interest in eating (upset stomach and nauseau are other side effects).

I felt good enough the other day to stop in at work to pick up a copy of a recent U.S. Supreme Court patent law decision we all were waiting for and poked my head in a few offices to say Hi. It was good to see my co-workers and I told them I'd be phasing myself back into the office over the next 2-3 weeks.

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Remember my birth brother Eric (35) who had a polyp discovered during his colonoscopy? Well, the last of my three blood brothers to get a 'scope done, Adrain (37), *also* had a polyp turn. His polyp was in the cecum (where the large intestine hits the small intestine). So, there you go. Three out of four brothers had intestinal polyps or cancer at 40 or younger. Smells of a genetic predisposition, doesn't it? The cancer services center at the hospital is all eager to do genetic testing, but I really don't see the benefit of it for me. Maybe if I was about to try having kids or something, but I don't need testing to tell me I'm at risk for rectal cancer. I've already had it.

But, again, it pleases me knowing that my brothers all got screened at an early age due to do what I was going through, and that in two cases, the early screening was worth it. Imagine if I had never gone to look for my family, or if I had gone looking for them 5-10 years down the road. One of them may have gotten cancer by then. Anyways, if it isn't obvious, I'm really latching onto this as something I can feel good about as a result of me going through this. And, believe me, right now it can sometimes be a challenge to find things to feel good about.

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Saw my surgeon yesterday. I went in expecting him to say that I was healing wonderfully, and that's pretty much exactly what I said. I asked him about the swollen butt flap, and he said that it could be 6-12 months (yes, months ...) before the flap softens up and becomes flatter. Six to twelve months. Great. The flap *is* getting less painful, so I should be able to get back on a bike and get active long before then, but it's going to feel odd for quite awhile.

I also asked about the numbness / lack of muscle control in the perineal region. He said that, well, they *did* take out the anus, and that does play a role in some of the functions "down there", so any function that depends on the anus isn't coming back. He said that he's pleased that I do have the functionality that I do have (gotta love doctors, "it could always be worse"), but he says I should expect for things to never quite get back to pre-surgery normal. That was disappointing to hear. I'm taking the approach that I'm still pretty early in recovery and will hold off on accepting my "new normal" until things reach a steady state, which may not be for another few months.

The surgeon pulled out the remaining few sutures, which were a source of pain, and gave me the green light to do cardio - elliptical training, recumbent bike (with a pillow), etc. That was good to hear. I may try getting to the gym over the weekend and give cardio a go. He also said that it seemed like I was close to being able to get back to work, maybe in the next 2-3 weeks. I said I agreed.

Also saw my medical oncologist (chemo doc) today. I was wondering what he was going to say given my complete pathological response, and, true to form for my experience with cancer, he's presenting me with a decision. I mean, it's always my decision whether or not to even have treatment or surgery or whatever, but he's presenting me with a treatment decision. He says people with a complete pathological response (no cancer in the resected tissue) either: (1) do not have adjuvant (post-surgery) chemo; (2) get chemo but only get 5-FU (the drug I was getting during before surgery); or (3) get chemo with the full FOLFOX cocktail (5-FU + Oxaliplatin). Oxaliplatin is a third-generation platinum-based cancer drug that has been proven to improve the response in patients with colon cancer. When Lance Armstrong went through chemo, he got the second generation platinum-based drug, cisplatin. From what I've been told, the side effects of oxaliplatin are gentler than those of cisplatin.

So, if I had a complete pathological response, why do I need more chemo? Good question. Even though the resected tissue showed no signs of cancer, we want to make sure that any individual cancer cells that are floating aroud the system are finished off. Should the pre-surgery chemo have done that? Sure. But, the studies show that for my stage of cancer, patients that receive neoadjuvant chemo in addition to surgery and neoadjuvant chemo to best. So, I'm pretty sure I'll be signing up for more chemo. Let's zap this sucker with everything we've got while we're going after it. I'm young, I'm strong, let's do it.

So, I need to decide whether I want 5-FU or Folfox. My concerns with Folfox is that oxaliplatin can cause nerve toxicity and you can get neuropathy (tingling, numbness and temperature sensitivity in the hands and feet). About 80-90% of people who get Folfox experience some level of neuropathy and it sticks with about 15% of people after treatment ends. And, it can linger for quite awhile - about 20% of the people who continue to experience neuropathy after treatment still have the effects a year or so later. That sucks. So, I need to do some research on this issue before deciding, even though I'm pretty burned out on researching treatment. Right now, my gut says go with the Folfox treatment and when neuropathy really starts to kick in, we back off to 5-FU.

One more note about 5-FU. Because I had some issues with receiving 5-FU via my chest port, my doctor wants to try Xeloda, a pill form of 5-FU. One may think that the pill form of a drug would cost about the same of the liquid form of the drug, but in this case, you would be wrong. 5-FU has been around for forty years and is cheaper than milk or gasoline. Xeloda, on the other hand, is still under patent and costs about $5,000 per month. Pretty amazing, huh? Xeloda is an FDA approved drug and insurance will pay for it, but we'd be asking them to pay $20,000 for a drug in the hopes that I don't have the same chest pain reaction. When I first thought of that, I couldn't help but try to put a price on how much it costs to avoid that chest pain. I mean, it wasn't any fun at all, and I can't imagine having to put up with that for 3+ months. But, is that worth $20,000? If not $20,000, how much is it worth to you? How much is making any health condition (cancer, post-surgery pain) go away. I don't know. I didn't spend too much time thinking about it because that's a road I didn't want to go down - putting a dollar amount on health. I have kick ass insurance and that's what it is there for - to cover my medical expenses.

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I'm not angry at Lance Armstrong anymore. A friend of mine works for an ad agency that just finished putting together Nike's latest Lance spot and he gave me a sneak preview. I'll just say that it has to do with fighting and beating cancer and that it is very inspiring.

There. All caught up now.