Monday, August 30, 2010

2:2:4

Long entry today ...

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Can someone explain to me why a medical supplier only puts *15* ziplock bags in a box of *30* ostomy bags? Do they really think I'm going to reopen a ziplock bag that already contains a used bag (a bag that I've already tied down as tight as can to keep all the shit odors *in* the bag) so that I can put a *second* used bag in there? Who would do that? How expense can 15 one-ply plastic bags be? It's complete and total brain damage, if you ask me ...

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Side effects have gotten a little bit better the past day or two. Was pretty much wiped out all day Saturday, which sucked because I had some plans to go do some cool stuff, but just didn't have the energy. Sunday I had the energy to do some much needed cleaning in the apartment, and was able to meet up with a friend that I hadn't seen in a while for dinner and a movie, so that salvaged the weekend.

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The highlight of my day today was re-filling my 7-day pill container. Another week of pills down, one more week to go for round #2.

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Had lunch with a colleague of mine whose Dad and brother are both battling cancer. His brother was diagnosed with Stage IV cancer back in March 2006. The doctors are telling him it's terminal, and the treatment is palliative, not curative. He's survived longer than the doctors said he would, but the outlook is still pretty grim. Anyways, the conversation was pretty thought provoking and I've been thinking a lot of the things we talked all afternoon and evening.

My colleague's brother has been going through a constant battle - attack the cancer with one round of treatment, step back and see what happens, let the body recover, find out it's popped up somewhere else, and then repeat the whole process. Six months into my own cancer treatment, when I hear these stories of recurrent cancer, or treatment that wasn't successful, I think of how I would respond to hearing the news that my cancer came back, and how completely and utterly devastated I would be. I mean, I would be beyond crushed. To have poured this much physical and mental energy into making it through treatment, to have waited all this time to be able to get back to the process of living and *enjoying* life, and then only to be sent back to the starting line again (actually, you'd be worse off - the outlook for recurrent cancer is always worse than the initial occurrence) - that'd be incredibly cruel. I don't sit around and dwell on these thoughts all the time, but I do think of them now and again. And, it gives me motivation to control the things that I can (diet, exercise, mental state) to maximize the odds that this doesn't come back.

We also talked a bit about religion, how CA can change a person's outlook on life (some deep topics I won't discuss today), and how going through something like this changes one's view of health care professionals and the health care system. Specifically, how a person who has been through a major medical ordeal questions the system more and becomes more of an advocate for themselves, which is a GOOD thing. Everyone SHOULD QUESTION their doctors and SHOULD become more of an ADVOCATE for themselves. Unfortunately, I think the vast majority of people, myself included, tend to defer to the doctor's expertise 99% of the time, and just go along with whatever they say. And that certainly seems to be a reasonable position. I mean, the doctors are the ones who went to medical school and did a residency, not the patients. They're the experts. They're the ones who are in a position to know best.

And, after going through my ordeal, I'll always be challenging my doctor from now on.

Let me tell you a little bit more about my story ...

So, as I've mentioned, I was diagnosed back in January when I went in for my annual physical. My doctor discovered the tumor when he did the prostate exam, which is the first time I had this done because I had just turned 40. Well, this wasn't the first time that the doctor and I had a discussion or did anything about my rear. I saw my doctor a year earlier for a physical and complained about rectal bleeding to him then, which had been a problem with me for years. Yes, years. Let me go back a little bit further ...

I don't know when this started, but at some point in my early thirties, I noticed blood in my stool. At first, this spooked the hell out of me, but for whatever reason, I wasn't concerned about it, or it happened so infrequently that I didn't get too considered about. I may have mentioned it to a doctor once or twice, and if I did, we likely dismissed it as nothing, because we never did anything about it. I'm going to dig up my medical records with my primary care physician in Washington to verify this, but this was all before I moved back to Wisconsin to go to law school.

During my third year of law school, when I was planning my around-the-world trip, I went into the university health clinic to get some vaccinations. The nurse practitioner gave me an overall physical, and I mentioned the rectal bleeding to her. It hadn't gone away, and I recall telling her that sometimes there could be a fair amount of blood, and that it occurred frequently. She poked around my backside a little bit and diagnosed it as "anal fissures" (basically, as I understand it, a cut that never gets a chance to heal - let's face it, you're always using this orifice). She also suggested not bearing down when taking a crap. (Being a Type A personality guy, I like to get my business done quickly. I have never been a person who carries literature into the bathroom and camps out for hours. I go in, take care of business, do the paperwork, and I'm out.) And, not bearing down seemed to work. The bleeding would lessen when I didn't bear down. We also did a fecal occult exam where they test samples of poo for blood, which is an indicator of various intestinal issues. But, never was a colonoscopy done or any other type of examination perfomred that involved actually looking inside the rear. The most she did was to spread the cheeks and the slightest of poking around to come up with her anal fissure diagnosis. So, after all that, I walked away thinking that I had chronic anal fissures and that if I wanted the bleeding to stop, all I had to do was not bear down.

Okay, that was 2007. Fast forward back to 2009.

So, this is the rectal bleeding history I relate to my doctor when I'm seeing him for the first time and getting my physical at 39. And, I mention that I'm *still* having blood in my stool. By this point, it's been going on for years. And what does he say? He says something to the effect of well, you're 39, next year you turn 40 and you're scheduled for a prostate exam then, so we'll at things then. I said sure and thought nothing of it. Fast forward to 2010. I go in to get the physical, the doctor does the exam, finds the tumor, and the rest is history.

So, since I've only gone over what could have been done differently to avoid being in the situation I'm in, oh, about a thousand freaking times, I keep coming back to the 2009 physical. I keep thinking, what if he had actually done the prostate exam *then*, or *some* kind of examination that involved an internal check of my behind. I believe that they would have could the tumor then, when it was smaller, and I wouldn't be sitting here with a goddamn colostomy. Dammit. It just eats at me.

I'm not a doctor, but when a guy complains about rectal bleeding that has been going on for years, don't you think you it's worth following up on? A digital rectal exam takes, what, 30 SECONDS?!? Isn't that worth the time investment? Hindsight is 20:20, but I wish that something had been done at that point at time. Sure, I'm only 39 at the time, and only 5% of rectal CA patients or 40 or younger, so maybe he doesn't even think of cancer being a possibility. Maybe he considers the background information I tell him about it being diagnosed as anal fissures and thinks that's what it is. I don't know. I do know that nothing was done at that point in time. No examination. Nothing. Nadda. Bubkis.

What I've since learned is that polyps take many years to grow and eventually turn cancerous. So, the odds are that there *was* a tumor or poly that in my bum a year earlier, a tumor/poly that could have been detected when it was much smaller.

So, where am I going with this. Two points.

First, as my colleague and I were talking about, you have got to BE YOUR OWN HEALTH ADVOCATE! ASK QUESTIONS! If you don't like what you're hearing, if you have concerns that you feel aren't being addressed to your satisfaction, explain them to the doctor, and get a SECOND OPINION! Don't worry about challenging the doctor or thinking that you're going to hurt his feelings or bruise his ego, this is YOUR HEALTH, not his. He sees lots of patients every day. He's not going to bring the same level of scrutiny to every patient. The doctor is human. They have bad days too.

This is particularly difficult because most of us don't know what to challenge the doctor on. In the abstract, when you first see blood in your stool, you're generally going to be pretty worried about it. Shit, I was. I mean, how can this possibly be a sign of anything that is GOOD? Right? But, after dealing with it for years, and having one health care professional provide what seems to be a reasonable explanation, it's easy to convince yourself that it's your lot in life to blood in your stool, and you go on your merry way. So, by now your initial instinct that says "blood in stool = bad" is gone, and when a doctor says, "Hey, we'll look at it next year," you buy into it without questioning it.

Second, and you may already have guessed this, but I think my doctor may have screwed up. I don't know what the standard of care is for this particular situation, but if the standard of care is to do some kind of physical examination of the rectum when a 39 yr. old male is complaining of a long history of rectal bleeding, then yeah, he screwed up. So, I'm in the process of getting records from my doctor to see if there's any record of that discussion. Either way, I plan on talking to few medical malpractice attorneys around town to see what they have to say. Hey, wait a minute ... is Doug actually saying that he's thinking about suing his doctor for medical malpractice? You're damn right I am.

Look, I like my internist. I think he's a good guy. But, if after researching this, I think he screwed up, and the price of his oversight is me having a permanent colostomy, I would feel completely justified in filing a lawsuit. For me, the main point wouldn't be any kind of monetary recovery (there'd be no trial, the hospital would settle to avoid going to court - everyone settles nowadays to avoid paying attorneys' trial fees), it'd be to send a message to my doctor, and to doctors as a whole, that you can't just say "let's take a look at it next year" in this fact situation. You've gotta go look because, guess what, even thought the odds say that it's unlikely, there just might be something bad back there.

The hospital would definitely want to avoid trial because I'd be a very sympathetic plaintiff. Sure, the defense would point out that here's this otherwise very healthy-looking guy who, at first glance looks like just you and me, who is able to do pretty much everything that he was able to do before cancer. They'd point out I'm a lawyer to play on any anti-lawyer sympathies of the jurors, and comment that the treatment worked. But then my lawyer would point out the simple fact that I now poop in a bag. And I'm here to tell you from personal experience, that when I was telling people the news of my cancer and that a possible outcome of surgery was that I may have to live with a permanent colostomy, most people grimaced, winced, or just plain went "ewwwwwww". It's just something that elicits a visceral response. The initial idea of a colostomy is gross, it's something nobody wants to think about, let alone consider having themselves, their partner, or anyone else they know saddled with one.

After five minutes of me describing my daily routine of life with a bag, urinary and sexual dysfunction, trying to date with something like this, etc., etc., it's not hard to imagine the jury coming up with a generous award. And that's without even telling the jury what going through ten months of chemo, radiation, surgery and more chemo was like.

But again, it wouldn't be about the money. No amount is going to but me back where I was before when I walked into that doctor's office for my physical in 2009. And don't think that the University of Wisconsin health system is off the hook either. I plan to take a look at them, too.

So, this is what was going through my mind this afternoon. I had been meaning to tell the whole background on my situation earlier in order to get my BE YOUR OWN HEALTH ADVOCATE point across, but today the timing was right.

Thursday, August 26, 2010

R2:W2:D1 - Halfway to halfway done

I guess I can call it week two of round two because I had the infusion last Friday afternoon, and it's now Friday night. Not much going on here in the land of Doug, just resting. The chemo side effects came on over the past few days, and I don't feel like doing much of anything. I've been streaming the hell out of Netflix movies the past few nights.

Between Xeloda and the oxaliplatin, Xeloda has won my vote for the drug the makes me feel worst. I had the oxaliplatin infusion last Friday (wow ... already a week ago), and, I felt pretty damn good throughout the weekend. Then, I got the Xeloda shipped to me Monday morning and I started popping those drugs. By Wednesday I started to totally feel like crap - tongue is jacked up so things taste different (if they have taste at all), having fatigue spells at times, but what really drives me up the freaking wall is just this overall feeling of feeling ragged around the edges. It's like a hangover that just won't go away. You want to just wash this crappy feeling of crap off you, and you just can't. It's IN you - it's in your blood, your bones, your muscles. It just doesn't go away. Drives me insane. But, it's not as bad as round #1. I was much more wiped out during round 1. And, in some ways, that makes it worse. I was so wiped out in round 1 that I totally felt justified in going home from work. Now, I want to give up and call it a day because I just don't have the mental energy to put up with how I feel, even though I don't feel that physically debilitated. It's kind of like a low grade mental torture, having to put up with this.

Another side effect is the constant, mild nausea. This isn't that bad, but it's enough that it makes me want to constantly have something in my stomach to sooth things other. Been eating lots of milkshakes and smoothies the past few days. And watermelon. Craving that - juicy, cool, sweet watermelon. Not always successful in reaching for a cup of carved up watermelon over a milkshake though. Sometimes there's just no substitute for a Burgerville milkshake. And I'm eating more too. Kind of been blowing my healthy eating the past two days, but what the hell. I'm just listening to body right now and trying to get through this chemo bullshit. If my body says "go to the movie theater and pay $4 for a jumbo sized box of Junior Mints," I'm gonna do it.

People at work continue to be awesome - supportive, checking up on me. I'm doing what I can at work. I think I worked about 50-60% of my normal hours this month, and my guess is that I'll probably be at that level until I'm done with chemo. Not only am I eager to get through with chemo so I can get back to work full time, but also because I'm looking forward to getting my mental acuity back. There are definitely some days where I come in, look at my work from the previous day, and wonder how Forrest Gump got the password to my computer.

Monday, August 23, 2010

R2:W1:D4

Day four of the second round. Scaling down the drugs by 20% certainly seems to have helped. I'm having a much easier time than I did with round 1. Of course, that could also be due to the fact that I've only been on the oxaliplatin the past three days. Just got the Xeloda mailed to me at work this morning, and took my first 2nd-round dose of that wonderful medicinal chewy goodness. (Blugh.) So, we'll see if it's the scaled down dosage or the absence of the Xeloda that allowed me to have a decent weekend.

And I did have a pretty decent weekend. Got a short 2-mile run in on Saturday, which was great. I didn't throw my back out after the first fifty seconds. First real run since surgery. Stopped when my body told me that was enough and the rest of the day had a real good feeling in my legs like they'd been worked a bit, but not overly so. So that was good.

I also got a good bike ride in on Sunday. Sauvie Island again. Went out for an hour, and banged out about 18 miles. Again, would have loved to gone out for a little bit more, but my body said that was enough. So I listened.

My post-cancer goal is to work out 5x week to get the 2.5 hours of exercise they recommend. And I did that this week. Proud of myself. Will I be able to do it every week? Probably not. Surprising if I could pull that off for the rest of treatment, but I'll do what I can with that as a goal. If I don't hit it, no sweat. I'll try again the following week.

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Was having dinner with a friend last night, and I had my first "accident" with the bag out in public. It was a bit messy and not terribly pretty, but it was discrete enough that my friend didn't catch on. I won't go into too many details, but I learned my lesson that I need to bring a spare (or two) for *both* parts of my bagging system. I had only been carrying a ziplock and an extra bag so that I could swap out a bag in case things filled up when I was out and about.

Well, this time, I blew a flange (the piece that attaches to you skin, and that the bag attaches too), so my "output" wasn't exactly being directed into the bag. Yeah ... I think this is what they call "pancaking" - the poo gets under the flange and lifts it off the skin. I think having just exercised for an hour on the bike didn't help - maybe the sweat on my skin under the flange loosened things up a bit.

Anyways ... I managed to exit gracefully without having to go into detail about what happened. Lesson learned. I was pretty bummed during the drive home, but didn't get overly depressed about it, and just took it as a learning opportunity. I can't change having this stoma, just have to keep learning on how to deal with it.

Sunday, August 22, 2010

Steroids

It's 2:46AM and I'm wide awake cleaning the apartment and folding laundry ... stupid steroids.

Friday, August 20, 2010

Round 2, Week 1, Day 1

Haven't posted in a while because I felt pretty darn good the past week. It was my birthday (41) and I was enjoy a week-long celebration. And, it being summer in Portland, there are all sorts of great things to do. We have nine months of drizzling rain and overcast weather, so when it is finally nice (July-Sep), Portland really packs in the summer activities. In the past week, I've been to a Timbers game (Portland minor league soccer team, which will become an MLS team next year, and Timber games are rally a helluva lot of fun here), watched the adult soapbox derby (Google it), hit the coast again on Sunday, and just been out with friends and coworkers for birthday lunches, happy hour and dinners. So, it's been great.

But, all this fun was done with the specter of starting another round of chemo looming over me. And, today I stepped back into the ring for round 2. My chemo doc scaled back my dosage by 20% because of the severity of my side effects (not that I thought they were "severe"). The doc said that the level of fatigue I was experiencing, along with tingling in my hands and feet still being around at the end of the round, was more than what he expected. I'm a bit disappointed that this means I won't get the full recommended dosage, because I want to give any remaining cancer the total and complete beat down they deserve, but it's a trade-off. If the side effects get better in this round, maybe they'll up the dosage back to full levels for round 3. So, here's hoping for reduced side effects this round.

The infusion session was boring as hell. My friend who was going to hang out with me got sick at the last minute, and showing up sick in a room full of cancer patients with reduced white blood cell counts isn't too cool. So, anyways, yeah, boring ... You show up, they draw blood through the port (which *always* takes 15 minutes because they can never got blood out of it and they go through the same song and dance every time before they go to what works), get vitals, wait for the doc, see the doc and tell him how the side effects are going, go back to the infusion room, wait for the blood test results, then get the anti-nausea meds infused (about 30-45 mins), then get the oxalyplatin meds (2 hr+). I was a little impatient with things because I was a little annoyed that by going to these chemo sessions, I'm willingly signing my body up for a couple more weeks for feeling like crapola. But it's my meds ... blah, blah, blah. It's good for me ... blah, blah, blah. Only 14 more weeks. Is it Thanksgiving Day yet?

The Green Boa Lady was there again today, so that was at least some entertainment. This time she and her friends were dressed up as the Rat Pack and they brought in a few Sinatra and Dean Martin CDs for the nurses to play for the group. I'm a Sinatra fan, so this was nice. And, as an extra bonus, Sinatra doesn't sign any songs that make you want to jump off a building, like "Everybody Hurts". Oh, wait, actually, "Send in the Clowns" is actually pretty depressing now that I think of it, but they didn't play that.

After I finished up at the hospital, got home, started to feel like crap, so went out to get some gellatto to help sooth the stomach. Got a double pistachio cone, and after the first lick I was instantly reminded that oxalyplatin causes *instant* neuropathy. Ouch. The cone tasted like pistachio-flavored electrical current running through my tongue. I was more interested in having the gellatto than in foregoing the neuropathy pain, so I said to hell with it, and finished the cone, neuropathy be damned. Then I came home and had a glass of water (cold) to wash it down. (Again, neuropathy be damned.) That move actually *was* a mistake as I wound up curled up in a ball on the couch for a few minutes in pain as my stomach cramped up due to the cold water. So, I relearned my neuropathy lessons for round 2 - stay away from the cold stuff.

Thursday, August 12, 2010

Round 1, Week 2

... is done, as of tomorrow morning. I just have one unopened pillbox in my 7-day, 14-box pill organizer and I get to empty that one in a few hours. The pillbox reminds of advent calendars. Chemo pills aren't nearly as fun as chocolates, but you look forward to opening the last box just the same.

This week has been pretty good. Side effects have been fairly managable. Today I missed work because I was completely wiped out, but that was it for the week. Been battling insomnia pretty consistently, not sure if that's the drugs or something else that's been bothering me, so I think that caught up with me today. Hopefully in a few more days, after stopping the Xeloda, I'll be able to enjoy a side-effect free week next week.

Unfortunately, I haven't been too physically active, though. Inspired by my ride on Saturday, I went for another ride after work on Monday. I did a 12 mile loop on Sauvie Island. It went fine, but most of the last 3 miles or so I spent out of the saddle because it was just getting a painful to sit. It wasn't the usual bike-seats-are-narrow-and-it-hurts-to-sit-on-them-generally-for-long-periods-of-time pain/discomfort, it was more of a hey-dude-take-it-easy-we're-still-healing-from-major-surgery-down-here-so-take-it-easy kind of pain. So, maybe I go out for the occasional short ride, but I'm going to hold off on regular riding for a couple of months. I can stick to hiking and cardio machines at the gym until then.

Saturday, August 7, 2010

I'm back (kinda) ...

Today I reclaimed another little piece of myself back from cancer.

So, if you've heard that saying that some days you're the hammer and some days you're the nail, everyone who's been reading this week knows that I've been pretty much chemo's bitch this week. I've totally been the nail and chemo has been one of those pneumatic hammers that can drive a couple hundred nails a minute. Well, after Wednesday's low, things got better day by day throughout the rest of the week. The chemo nurse called Thursday to check in on me and reminded me that exercise can help stave off fatigue. So, Friday I just dug my heels in and walked to and from work, fatigue be damned, and this morning I woke up feeling pretty well rested for the first time since starting chemo. By the time afternoon rolled around, I still felt pretty good so I jumped on my road bike to see what would happen. I went a few blocks, things felt pretty good with the seat, so I decided to get a bit further. One thing led to another, and before I knew it, I was out on the main highway heading toward Sauvie Island, moving at a pretty good clip. I knew it was best not to bite off more than I could chew, so I turned around well before I got the island, and headed back home. But, still, the point is, I managed to get out on my road bike - the first time since a couple weeks before surgery. Got 15 miles in. It felt great - legs were pumping, blood flowing, heart pounding, wind in my face ... Man, I missed that.

Cancer can kiss my ass.

(what's left of it).

Thursday, August 5, 2010

Today was a bit better. Felt less crappy overall, managed to mill around work for a few hours and get a few things done, but was pretty wiped after a few hours and returned home. Post-surgery fatigue and chemo fatigue are two entirely different things. The surgery fatigue comes more in waves that you can ride out, but the chemo fatigue is much more consistent. The surgery fatigue you can sleep off, but the chemo fatigue you can't. Nor should you. It only gets worse. You've got to fight through it and get some activity otherwise you're really going to struggle with it.

Tomorrow I'll have one week of chemo down. Hey, it's a start.

Wednesday, August 4, 2010

Two words

Chemo sucks.

I'm settling into week one (out of 17) of chemo and the side effects are starting to settle in as well. Woke up this morning just feeling like crap - tired (despite eight seemingly good hours of sleep) with that never-ending rough-around-the-edges-hangover-type feeling that chemo gives you. After dragging myself to work (breakfast shot through me like a freight train, and feet were all tingly from the walk in), I stayed for about half an hour, and then dragged myself home. Just woke up from about 3-4 hours of sleep. I guess my body needed it. I was up until 4A and 2A on Sunday and Monday due to the steroids they gave me (ah, side effects of drugs to treat side effects of other drugs), so I was in the hole. Feel better now that I'm rested a bit.

So, I'm trying to figure out how best to mentally get myself through this loooong stretch of chemo. Seventeen weeks or 119 days is just too big of a chunk of time to think about. That's longer than a semester of law school. Taking it as one three-week cycle at a time is going to have to be the way to do it. And, with drugs for only the first two weeks of each three week cycle, that's only fourteen days of medicine before I get to look forward to a week of recovery before another cycle begins. So, that's what I'm going to do. Right now, I'm almost halfway done with the medicine for the first cycle.

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This is frustrating as hell because now, for the third time during treatment, I'm having my health yanked out from under me. First chemo, then surgery, now more chemo. But, I stand there and take it because I know the medicine is good for me. I know I whine and bitch and moan to myself about this, but in the past week or so I've really been giving serious thought to the fact that this disease could have killed me if it had gone unchecked and that this treatment is (has) saved my life. I mean, I never felt like I was on death's door with the diagnosis of cancer, there was every indication that I could be treated with an intent to cure, rather than an intent to ease pain. So, that puts things in perspective and makes everything I'm going through much more tolerable. That, plus all the support I continue to get from all my friends and family. I appreciate everyone who stops by at home or at my office at work, calls or just sends an email to check up on me. It does make a difference.

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I was talking to a friend about the whole "what now" aspect of post-cancer life and what I would want to do as part of the physical recovery. I mentioned things like marathons and triathlons and other 'thons and she just said that I'm doing more than a triathlon with everything I'm going through with treatment and that I should do something to RELAX after treatment. She's absolutely right. It's totally a chemo/surgery/chemo triathlon. In fact, the 119 days of chemo are close to the 112 miles of the bike stage of an ironman. I KNOW when I'm done with chemo I'm going to be completely wiped out and spent, and that it's going to be awhile before I regain my strength to start doing any type of serious physical activity again. So, yeah, I think I'm going to find some place where I can just go for a few days to relax, chill and let the body recover.

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Sunday, August 1, 2010

Went large yesterday

Had a pretty good day yesterday, was pretty active and didn't have too many side effects kick in. First, took Tahoe to Sauvie Island for some fetching in the river and to pick up some u-pick produce. No biggie there, but then hopped on the bike to see how things felt. Things felt fine and an around-the-block test ride turned into me riding me bike to our company picnic (twelve miles round trip - (screw baby steps)). Ass didn't hurt too much, and it was really two six-mile rides with a long break in between. I'm not ready for longer rides on my road bike yet, but this was a good test to see where I'm at. Was pretty happy about being to ride. Ran out of steam when I got home, slept for a few hours and then went to a co-worker's party for a short bit before running out of steam. So, a decent bike, a couple social outings - that's a pretty good day for me.