Monday, December 20, 2010

Happy Holidays

Merry Christmas and Happy Holidays everyone!

I have some time for a special holiday posting before I head over to my friends' house for a potluck dinner. I'm bringing a bean casserole, which requires me mixing a few cans of soup and veggies together and heating it up. Well within my cooking skills.

--

Post-treatment life continues to go well. The bouts with fatigue have switched from daily to one to two times per week. What is happening is that I'll have 3-4 days of feeling normal, and then my body will demand a day of rest where I sleep 12-14 hours straight. That one day can be a bit frustrating, but I'll take it.

Felt strong enough to go snowboarding on Mt. Hood yesterday with one of my good friends for several hours. It's been at least eight years since I last went snowboarding, but it's like riding a bike. After a run or two, I was doing just fine. Kept myself to the greens and blues and still fell down a good bit, but it was *great* to get back out in the outdoors. Three hours wiped me out, and I'm still feeling tired today, but getting out there yesterday ... it felt like I got another small piece of my life back.

There was concern about whether the colostomy bag would hold up with me continually falling (sometimes belly first) and repeatedly crouching over to do/undo my bindings, but everything held together just fine. No leaks or explosions. It's nice knowing that I have an ostomy hardware system that holds together (most of the time).

--

Had a post-treatment follow-up visit with my chemo onc. He says all my blood levels look good and gave me the general lifestyle guidelines for the post-treatment colorectal cancer patient. Most of it is the usual stuff that everyone already knows - regular exercise (5x/week - cardio plus resistance), eat well (lots of veggies / fruits) and maintain your ideal weight (I think mine is around 205-215 and I'm at 235-240 right now.)

He also said to take a baby aspirin (80mg) a day. Apparently, studies show that daily aspirin can reduce mortality rates in people who have had Stage I, II or III colorectal cancers:

http://www.sciencedaily.com/releases/2009/08/090811161308.htm

The anti-cancer effects of aspirin are believed to be due to aspirin blocking or reducing the action of the CO-X-2 enzyme, which is the mechanisms by which aspirin eases pain and inflammation. Inflammation - there it is again. Much of the advise in that "AntiCancer" book I was reading earlier this year goes to reducing the risk of cancer by preventing the body's inflammation response from kicking in - avoid foods that create an inflammation response, stay stress-free as stress induces an inflammation response, etc.

So, the aspirin makes sense to me and I'll be adding a baby aspirin to my daily nutritional supplement regiment (which already consists of Vitamin D, a general multi-vitamin/mineral and fish oil). In addition, the studies mention that most colorectal tumors are CO-X-2 positive, which means that most colorectal cancer patients will benefit from taking aspiring. I don't know whether my tumor was CO-X-2 positive, but I'm going to ask my chemical oncologist when I see him next.

I asked my doctor about alcohol consumption as well. I had read everything from total abstention is required to making sure you drink one glass of red wine a day (red wine contains resverterol, an antioxidant found in the skin of grapes that has been found to reduce certain types of cancer in mice - although no human studies have been done to back that up). My chemo onc said there's no data showing that total abstention or drinking red wine daily is going to help or hurt colorectal cancer patients. He said that, as a general health rule, drinking alcohol is fine, but keep it to one glass per day. So, I'll try and keep it to that.

--

We just had our annual health insurance enrollment at work. I signed up for the maximum guaranteed supplemental life insurance that our provider supplies (guaranteed meaning they can't deny me coverage because I have cancer), and am trying to sign up for a bit more supplemental life insurance, for which I need to provide evidence of insurability. I tried getting the supplemental insurance before, but was denied due to my cancer. But, I'm trying again. Maybe being done with treatment and having had successful surgery will change things. Doubt it though. I still expect to be denied.

I think the standing waiting period, at least for this particular provider's employer-provided health insurance, is seven years. The forms only ask if you've undergone cancer treatment within the past seven years. That's not *too* bad.

Also, the maximum health insurance benefits limit has been removed with the passage of the new Health Care Law. This is good news. Before, my lifetime maximum limit was $2 million, and this past year ate up 10% of that. So, I had some concerns that if I had several more rounds battling cancer, or had some more serious health issue later in life, that this wouldn't be enough. I know not everyone in the U.S. is behind health care reform, but I'm glad it passed (and frankly, wish it had gone further). And not because I was diagnosed. I was for health care reform even before diagnosis.

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I've had some experiences the past month with "phantom butt syndrome." You know how people who have lost a limb have "phantom limb syndrome," where they can feel their arm or leg, even though it's not there any more? Well, there's been a couple of times when I felt I really needed to take a dump, even though I know that sitting on the toilet will do nothing for me except cause my legs to fall asleep. I don't know if "phantom butt syndrome" is what this is called, or if this is a common thing, but that's what I'm calling it.

---

And speaking of crapping, I've had a few Adventures In Poop of late.

So, with treatment over, I've begun eating the leafy greens, fruits and veggies again, and, as everyone well knows, this tends to loosen the stool a bit. And generally, this isn't a problem. I still have a c-bag to catch everything that comes out. However, the c-bag isn't on 100% of time, so there are brief moments during the day when I'm playing without a net.

When I have to change bags, sometimes a little (or a lot) of waste escapes, which, if I'm standing over the toilet or in the shower, is really no big deal. Just flush it down, or spray it down the drain (followed up by lots of bleach cleaner), and it's all good. Well ... two weeks ago my digestive tract had an adverse reaction to one of the first post-treatment salads I ate. Maybe it was because I didn't clean off the veggies entirely, or maybe because it was the first leafy greens my digestive tract had seen in months, or maybe because the chemo was still in my system. Whatever the reason, the reaction was bad, and the effected waste made it to the exhaust port just when I was changing bags.

I never felt it coming.

As I was standing over the toilet, and about to put a new bag on, my stoma violently erupted. I mean, it just exploded. Just thinking about it again ... oh my god. I had the toilet seat up, and the whole seat got sprayed. The spray made a neat outline of the upright seat against the back wall. I immediately doubled over with the intent of directing the stream of waste into the bowl, but the spray pattern was just so erratic that this didn't do much good. The whole toilet was just covered.

The whole "event" lasted about five second and when it was done, I just stood there, slack-jawed and staring, somewhat in disgust, but mostly in sheer and utter amazement, at what just happened. I mean - Oh. My. God. It's one thing to sit on the can and have diarrhea shoot out of your behind into the bowl, but to have your stoma unexpectedly turn into a fire hose spewing out poo, well, that's just another thing entirely. I mean, wow.

It took two rolls of paper towels and most of a bottom of bleach cleaner to clean that mess up.

--

One last tale before I head out. It's been over six months since I've been home from the hospital, and during that time I've been handling waste disposal by chucking the used c-bags into a small wastecan next to the toilet, and emptying the wastebasket in the apartment building dumpster at least once a day. During all this time, my dog, Tahoe, who has been known to tear through a garbage bag or two in his lifetime, has never bothered with the bathroom waste can. And, from my standpoint, for good reason.

Well, you know where this story is going to go ...

Sure enough, for whatever reason, about a week ago, Tahoe went into the bathroom waste can, dragged a full c-bag into my living room rug, and proceeded to tear it apart. Big, gross mess. More cleaning solution. More rolls of paper towels. I now have a diaper genuine in the bathroom. It's hardly discreet and is bound to draw comments from guests, which is the main reason why I was hesitant to buy one in the first place. But to hell with comments. I'm over it. My dog can't get to the full c-bags, it keeps the odors away, and it's something I'll only have to empty once a week or so.

I'm not sharing these stories to gross people out or anything, I just want people to know what the day to day life of living with a permanent colostomy is like. Things aren't all roses, but once you get on top of things and heal up from treatment, you really do get your life back and can do everything you did before. You can't let the overhead of having to deal with a c-bag day in and day out get in the way of your day to day living. I think in another 6-12 months or so, I won't even be thinking about it much, and it'll be just another part of my daily routine, like putting in or taking out your contacts. At least, that's what I hope. And if any of you are facing life with a c-bag, that's my hope for you too.

Happy Holidays and Merry Christmas!

Sunday, December 12, 2010

Waiter ... Check please ...










Well kids, I'm done with chemo. Finished up last Wednesday.

No more pills.
No more infusion sessions.
No more treatment.
No more dealing with effing Walgreens.
No more sensitivity to cold.
No more distorted taste.
No more chemo brain.
No more nauseau.
No more radiation.
No more surgery.
No more steroid-induced insomnia.
No more cancer.

Fatigue, numbness in the hands - well, that's gonna take awhile to go away. Still got that.

I'd have posted a celebratory note then, but quite frankly, I was way too tired. This last round was the worst, in terms of fatigue, and only in the past few days have I had enough energy to really feel happy about being done. And really, I'm ridiculously happy to be done. Honestly, I haven't felt this good since I was diagnosed back in January. Which, amazingly, was 11 months ago, although it seems like I heard the "C" word just yesterday. I remember it clear as day. I'm just so glad/relieved to be DONE with it all, to get my HEALTH back - permanently - no more of this "let's let his health improve before we hit him with surgery or chemo again." That's it. I'm done.

Unless, of course ... it comes back.

I've read enough on the blogs and cancer web sites to know that I'll never feel like I'm out of the woods, that it's only a matter of time before the other shoe drops. I'm keenly aware of what the survival odds are, and I know there are people whose blogs I've been following or whose postings I've read on the support group sites,who had the same diagnosis as me, went through the same treatment as me, who are even *younger* than me - and they had a recurrence. I know that the lungs and the liver are where rectal cancer usually travels too next, and every time I have an ache or pain in those areas, I can't help think it's you-know-what coming back with a vengeance. Same with every time I feel any kind of pain in my head, "oh god, now it's in my brain."

But, I know it's a normal part of Life After Cancer.

See? Isn't this fun? Even after every cancer cell has been eradicated from my body, cancer keeps on giving.

I have my one-year scan next month and I'm really looking forward to it. I'm a data driven guy, and I want to the assurance of a full chest/abdominal scan that there's no cancer left (to the extent a scan can discover that stuff). I went that clean bill of health. Then I can move forward with a little more confidence that we won the battle.

I say "we" because this was hardly a battle I fought on my own. Set aside the help from my medical team for the moment. If I had to have gone through all of this all on my own, with no support from family, friends and coworkers ... well, there's not too many things out there where I would say I just couldn't do it, but battling cancer alone - I hope there's nobody out there who has to do that.

I've thought of many metaphors for battling cancer. The two that I keep coming back to are a boxer fighting cancer in the ring, and having to travel alone down a long, dark road with unknown dangers and perils lying ahead. In both cases, they both involve someone being supported, but being the one who takes has to take the blows, who is put in harms way - nobody else can do it for them. Nobody but me was going to receive those 31 rounds of radiation, be hooked up to an infusion pump for six weeks, undergo surgery, put up with 17 weeks of pills and infusion and have to live with a colostomy bag. But, that didn't mean there was support to be had. The boxer returns to his corner for encouragement between rounds, the traveler is given what he needs for the journey ahead from his friends, and I had all those phone calls, emails, letters, cards, pictures, prayers, well-wishes and visits. And for that, I will always be grateful.

So, it's been a good week, as good a week as I've had in a long time - had dinner with good friends the past two nights, had our firm's holiday party earlier in the week ... and, of course ... I finished chemo.

2010 has easily been the worst year of my life. None of the other setbacks or difficulties in my life even come close. Learning you have cancer, going through treatment, having your poop hole surgerically removed. It's not fun. The year that I die, now *that* will be a year that trumps this one in terms of suckiness, but hopefully that's a long, long ways off.

There's plenty of stuff left to do, and now it's time to get back to doin' it.

Monday, December 6, 2010

6:3:3

I'm looking at the last three unopened compartments in my pill box. Three more doses. Fifteen more pills. Contemplating taking them all now, or throwing them away, just so that I can be done *now*. Okay, I really won't take all the remaining pills at once - that's really not a good idea. But tossing the rest of drugs ... it's appealing. I mean, what are the odds that any recurrence depends on me taking or not taking these last 15 pills? Are there really any remaining cancer cells that are hanging on by a thread and will only die if I take these last 15 pills? Are there any cancer cells left at all? If not, how long ago did the last one die? How much of these treatment was unnecessary? Was this treatment enough?

....

I'm going to behave and take the rest of the pills.

Saturday, December 4, 2010

6:3:2

Another side effect of rectal cancer ...

I'm working on a patent application where I'm repeatedly using the word "anaglyph." I keep on typing "analglyph."

6:3:2

Sixth day in a row where fatigue has preventing me from having a "normal" day. I'm sick of waking up after a good, long night's sleep and then feeling completely wiped out after walking the dog a whole two blocks. Today it took me about six hours of "rest" before I could get out and start the day. Is it Wednesday yet?

Thursday, December 2, 2010

6:2:7

Post #101. Time to start my second hundred posts about my cancerous adventure.

It's been exactly six months since my surgery. Six months. Honestly, it's hard to believe that it's been that long. I've come a long way and filled up a lot of poop bags since then. Last night, I was reading the blog of a woman in England who just recently had her APR procedure, and I have to say, it was tough to read. It just reminded me too much of what I went through, and how much it sucked. It's funny. I think part of me wants to suppress those memories because they're not terribly fond ones, and yet, another part of me never wants to never forget any of the details of treatment (not that I'm really going to) so that I appreciate every day from here on out as much as I should. (I wish I had recorded more about my visit. Would have been tough to do - I couldn't even mentally focus to set an alarm on my iPhone, so keeping any kind of journal would have been tough. I could have done voice recordings ... Anyways ... ) I already use making it through treatment as a motivator, a little pick me up, when I need to find a little extra oomph to make it through the day. It puts everything in perspective. If I can make it through that, I can make it through anything.

Saw my surgeon today. Pretty routine visit. He took a look at my behind, marveled at his handiwork and how well it's all healed up (with much agreement by the surgical resident), and sent me on my merry way. Physically, I'm just marking time until I'm done with treatment. I haven't exercised in a few weeks now, just been too tired, which I'm sure only makes the fatigue worse (this has been a bad week for fatigue - I've missed a lot of work). My hips continue to be incredibly tight - glutes and hamstrings are so tightly wound that it's going to take months of stretching to get back them back to normal, and I was never flexible to begin with.

Not much progress in the numbness department. My behind, a good portion of the frank and beans, and all parts in between are still pretty numb. On the plus side, the plumbing is operational, for the most part. There's no continence issues or anything, I just can't stop the stream once it starts.

I'm scheduled to have my port removed on the 22nd. Can't wait to get that damn thing out - tired of having that bump showing through my shirt. I'm surprised more people haven't asked me about it. In January, I have my first follow-up CT scan since being diagnosed. I'm looking forward to that to see if I'm in the clear, and I'm already a bit anxious and nervous about it, especially given the recurrence odds. I've read enough cancer blogs and heard from enough other cancer survivors that this "scanxiety" is normal. We all think that every little ache or pain is a recurrence of cancer, and that the scan will ultimately prove this to be true. So, I'm trying to take everything in stride.

Another day closer to being done.

Wednesday, December 1, 2010

6:2:6

This is post #100. 100 blog entries about cancer. Before all this nonsense began, I'm sure I had several ideas now and then about about writing a blog and what it would be about, but I never thought the subject would be cancer. Or that it would be *my* cancer. Or that it would be my *ass* cancer. Unfortunately, the subject was kind of handed to me. It's kind of like a cruel homework assignment by God. God: "Okay class, I want everyone to write a blog about a subject that I will be assigning. I want the blog to be about something they've experienced personally. Doug, I want you to write about ass cancer." Doug: "Whoa. Hold on there big fella. Ass cancer? How in the hell ... oops, sorry ... How in the world am I supposed to write about that? I don't have ... waitaminute. You didn't. You can't be serious." God: "That's right. I believe you have a physical scheduled next week." Doug (going white) "Fuck."

So, 100 blogs entries. I finish up with treatment a WEEK FROM TODAY, so I certainly do not have 100 more blog entries in me about enduring treatment. But I probably have 1,000 entries left in me about cancer, especially Life After Cancer. I have a ton of things on my mind, and a thousand things I want to do, so there's plenty of blogging fodder. I may spin off another blog or two on other topics - travel (actually, I guess I do have a travel blog - I just haven't posted in a few years), getting/being healthy, etc. Who knows. Or, I may just keep things to myself. (Believe it or not, although I feel I lay quite a bit out here, there are some things I keep to myself. Mostly, it's the darker side of having to deal with cancer. I have other outlets for that, like the colon/rectal/anal cancer support group I go to. It's easier to share those things with others who are on the same journey.)

So, 7 days left. I'm glad it's the last round, because the side effects of the drugs are getting stronger with each round - the fatigue, the jacked-up taste, the tingling in the hands, the dryness in the feet, the temperature sensitivity.

My friends are asking what I'm going to do to celebrate being done with treatment, and I say, "sleep". Don't get me wrong, I'm going to be ELATED that I'm done with cancer treatment, but I'm just not going to have the energy to go out and really celebrate. I think what I'm going to do is get a few friends together for happy hour, take my last dose of chemotherapy there in the bar, and down it with a whiskey chaser. I'll have a more proper celebration once I have a bit more strength back.

Almost done.