Thursday, September 30, 2010

3:3:7


It's officially here .. Hump Day. I'm halfway done. Thank god.

Three rounds down, three to go.

I start Round #4 tomorrow. It's all downhill from here (actually, it's probably more accurate to say that I'm all downhill from here ...)

We'll see if doctor reduces my dosage given that the cumulative effects of the prior three rounds are kicking in, but I'm hoping to maintain the status quo so that I get as much of the poison as possible.

Monday, September 27, 2010

3:3:4

Even though my next infusion is on Friday, I'm already thinking about it. And you know what's driving me crazy? A smell. It's the smell of this liquid that they use to sanitize the skin around the port before they put the needle in. It just makes me nauseous, and it's right under your nose for the entire 3-4 hours you're hooked. You can't get away from it. I was smelling it all afternoon at work and I was getting all nauseous. How can something as simple as a skin cleaner be the one thing that makes me apprehensive about the next round of chemo. You'd think it'd be seeing everyone else hooked up to IV machines, or watching the poison slowly drip into your veins, but no ... it's skin cleaner.

I asked around the office and Googled for a natural nauseau cure and came up with peppermint candy. That did the trick.

Sunday, September 26, 2010

3:3:3

Finished up pills for round #3. Now, let's see how much I can "recover" before the start of round 4 on Friday. Now I know why they have this recovery week between finishing your meds and starting the next round. I was pretty cocky with the first two rounds, and now the cumulativeness of the chemo is catching up. I've read and been told that by the last few rounds, that last week isn't enough to get you ready for the next round. I appreciate that a heck of a lot more now than I did about a month ago.

Thursday, September 23, 2010

3:2:7

Tomorrow I'll have finished up eight weeks of chemo. Eight stinking weeks. Nine and a half to go. By my count, I've taken 418 chemo pills so far.

--

This week I was supposed to be coming out of my "chemo low," with my strength slowly regaining and the mental haziness clearing up. That hasn't happened. This low has been an extended low, worse than the first two rounds. The low hasn't been as deep as round #1, but it's certainly been extended. Just hate it. Left work early today because I was just wiped out ... again. I called the nurse at my chemo doc's office to whine and she said that yup, that's the chemo talking, and that yes, each round is going to get worse. (Basically, she was just telling me to suck it up.) I knew that, but I was getting used to (and looking forward to) coming out of the low this time. Maybe they'll reduce my dosage for round #4, we'll see.

But, with the prolonged and intensifying side effects, dealing with the chemo is really starting to be a challenge. I can come home midafternoon, crash for a few hours, lay down for a few more hours to stay rested, get a full night's sleep and then wake up feeling still pretty wiped out. You just can't kick it. I've been laying low, not doing much exercise, and not really watching what I eat too much, and I'm sure that hasn't been helping (which is a function of me not going to the grocery store - if I don't go, I tend to eat on the go, which is never the healthiest way to eat). And, not exercising only makes the fatigue worse. So, I've got to start picking my battles and take care of the tasks I need to take care of so that I can stay healthy with my limited energy.

--

Went to the colon, rectal and anal cancer support group on Tuesday. I went once previously, back in April, and wrote about how it was a bit touchy-feely for me. Well, five months later, after having gone through surgery and everything, things are different for me, and I thought this might be a good thing for me. The past few weeks I feel like I'd been trying to ignore everything that's happened to me so that I can move forward with my life, but realized after reading some posts on the Colon Talk blog, that dealing with cancer treatment and "life after cancer" is going to be an ongoing process that will last long after treatment ends, on many levels.

And, I'm glad I went, if for no other reason than to just to be able to talk with everything that's happened since I was there last, and to talk about things with others who are or who are going the same thing. One person there was recently diagnosed with Stage IV colon cancer (not good) and another person had completed treatment for Stage II colon cancer - she was only 30. 30!! Unbelievable. My heart really went out to both of them. The person with stage IV cancer had the infusion pump and hearing the periodic whir of the pump delivering another dose kept bringing me back to those six weeks before surgery. That seems like a lifetime ago.

Monday, September 20, 2010

3:2:4

Not much to report - rode out the weekend pretty much holed up, consumed mass amount of media (football, movies, Mad Men) while passing in and out of consciousness as I tried to sleep off the fatigue (to little effect). I was pretty much reduced to being a couch potato the past four days because any activity requiring higher levels of brain functions just don't work out - the chemo brain has really kicked in this cycle.

--

I did managed to get a little bit of physical activity this weekend. I make it down to the Susan Komen Breast Cancer run on Sunday. Pretty impressed with myself as I was with friends until 11P the night before (a big deal nowadays, believe me) and the race was at 7:30A. It was a pretty tough 5K to pound out given my tiredness, but I managed to run the whole way. My Mom and my aunt are both long-time breast cancer survivors, so I've done this run a few times over the years in honor of them. Obviously, I have a heightened interest in supporting cancer survivors now that I've joined the group. Running with all those people with the "In Memory Of ..." signs on their t-shirts, I got choked up a few times. I mean, how can you *not*, regardless of whether or not you're a cancer survivor?

Best t-shirt I saw was worn by a group of guys - pink t-shirts with two strategically places softballs on the front with the words "Save 2nd base"

--

68 days left of treatment. (I had to add a few days. I'll be taking the last pills the Monday after Thanksgiving, not on Friday)

Wednesday, September 15, 2010

3:1:6

I should really be working on a patent application draft that I have due tomorrow, but ... thinking about next year and all the fun things that I want to do are much more fun.

Right now, I'm poring over a map of the Grand Canyon. I'm hoping to do an extended backpacking trip there next year. It's been on the list for years. I've been pretty gung-ho of late regarding my plans for what I want to do for a "cancer comeback" tour next year, and I've been hitting up a lot of my friends to see if they're in. I know if I do one-third of these things that I've thrown out there, I'd be pretty satisfied. But, just for fun, here's some of the things I've been thinking about doing:

Hiking the Kalalau Trail on Kauai (this is pretty much a done deal, plan on doing it in Feb.)
Grand Canyon Backpacking Trip (spring or fall)
RSVP (Ride from Seattle to Vancouver, Then Party) - 2 day, 190 mile bike trip in July
Hood to Coast Run (running relay event from Mt. Hood to the Pacific Ocean) in August
Century Ride in Colorado
Ride for the Roses bike ride in Austin, October
A 1/2 marathon somewhere ...
Olympics Backpacking trip in Sept./Oct.

Okay, yeah ... that's a bit much. But you get the point. I want to be done with chemo, come charging out of the gates next year, grab life by the throat and not let go. I live in Portland because I love the Pacific Northwest so much, and it bugs the hell out of me that I haven't taken advantage of it the way I did before I left Seattle for law school. And it's not just the cancer that's sidelining me, it's been other things - law definitely sucks up more time than engineering. Well, that's gonna change.

So, one of my post cancer changes (well, really, these changes are already taking place, I don't need to wait to finish treatment for this) is to get out enjoy where I live more. To do more of the fun things I've put off since moving out here (many of which are on my 2011 list). Of course, there are so many other things that going through cancer has caused me to reflect on, but this is just one thing.

Yes, these are "me" things, things that Doug wants to do because Doug enjoys them, but I hardly plan on spending all my energies on just doing things for me. Hardly. After going through this ordeal, and being the recipient of so much caring, love, giving, well wishes, positive energies, you name it, there's a lot I want to give back.

And when I think of that, I feel good about my prognosis, my future, about the odds of not having a recurrence. There's just too much to do to have life cut short. Maybe that's being naive, but if so, so be it. I'd rather hope for the best than plan for the worst.

Monday, September 13, 2010

3;1:4

Well, well, check this out ... looks like there's a colorectal cancer run equivalent to the Susan Komen breast cancer run that has built momentum over the past few years ...

http://www.getyourrearingear.com/about/get-your-rear-in-gear/

This is good to see. Too bad no runs coming in the Portland or Seattle areas.

(At least not yet ... )

3:1:4

Oh, wanted to share this. It's a Dave Barry column about getting a colonoscopy. Being a Dave Barry column, it's riotously funny, but it also carries an important message about getting screened.

http://www.miamiherald.com/2009/02/11/427603/dave-barry-a-journey-into-my-colon.html

And, I can't help but share (yet again) the video of comedian Billy Connolly doing a bit on getting a colonoscopy:

http://www.youtube.com/watch?v=BBMsPNI6EZE

3:1:4

Well, I'm starting to descend into another chemo trough. The delayed onset of oxyaliplatin side effects are starting to slowly kick in and I start taking the Xeloda again tomorrow. But, I made the best of the weekend - bike ride on Saturday (fundraiser for a vet hospital put on by "The Lucky Lab" - a local chain of brewpubs), wedding reception and another ride on Sunday (with a riding group put on by the shop where I bought my bike). The rides took a bit out of me - took nice long naps after each one, but all in all, it was good fun.

--

New side effects to report -- burning sensation when I urinate. This one took my by surprise. Nobody gave me the heads up on that one. It happened right after the infusion (that shit just pounces on you - the side effects are immediate. No surprise really, I mean, they're pouring into right into your heart). All I could think of was the Eddie Murphy Raw routine:


"They got dudes in the doctor's office with symptoms like, 'Excuse me, doc, what does it mean when you go to the bathroom and fire shoot out your dick?'"
"Let me get this right. So you're getting a burning sensation when you urinate?"

"No, fire shoot out my dick, is all."
"A burst of flame fly out my dick when I pee."
--

Well, at least I'm a few more days closer to being done with this nonsense. What is it? 75 days left?

Badgers and Packers won, Dallas and Minnesota lost - good football weekend.

Friday, September 10, 2010

3:1:1

Officially entered the ring for round #3 today. The doctor's visit didn't start off too well - waited 90 minutes before the doctor was finally came into the examination room. Annoying, but really, what are you going to do? I've got a good chemo doc and he's known for really taking the time to sit down and talk to each patient, really listen to them and give them his full attention. If that means he runs behind every once in awhile, even if it's 90 minutes, I can deal with that, especially if running late is the exception, not the rule. They gave me a Starbucks gift certificate (a whopping $5) as a goodwill gesture, which was appreciated.

I won't blog about the infusion process and how I feel right now, because I've beating that topic to death.

I will say that just the fact of being in the hospital where I've gone through so much - first heard the "C" word, had my radiation treatments, my surgery, my chemo - just dampens my spirits. I feel like the whole "cancer" thing is getting rubbed in my face. I'll have these moments where I'm walking down the hallway or riding the elevator, realizing where I am, what I'm doing here, and just shake my head in amazement, bewilderment. I think to myself, "Holy shit. I'm a cancer patient. At 41. How the hell did this happen? Why did this happen? Where did I go wrong?"

It's usually a passing thought and I try not to dwell on it much. I focus more on looking forward to moving on with my life and living it to the fullest. It's easier to do that when you go to work every day, get out and exercise and hang out with friends. Not so much when you're sitting in an infusion room for 3 1/2 hours.

Laying low tonight. My dog went under anesthesia today for a much needed tooth cleaning (and a tooth removal), and is all drugged up from that (kinda funny actually ... he can't walk straight), but he needs to be watched for the evening. So, we're doing a little bonding as we're both drugged up at the moment.

Thursday, September 9, 2010

3:1:1

Today when I was picking up a bunch of birthday cards, I noticed the Get Well card section and wondered why I there aren't any cancer greeting cards. As a cancer patient, I thought it'd be pretty cool to get one. Well, I googled it (I mean, I "Bing"ed it - sorry, Microsoft is one of our firm's clients), and sure enough, they're out there:

http://www.greetingcarduniverse.com/shopping/cb.asp?keywords=corrie%20kuipers%20cancer

I like these, but if I were do them (and don't think that I won't), I'd make them just a touch edgier, or with a more morbid sense of humor. I think they'd sell pretty well. Maybe I'll set up a web site for that and donate some of the proceeds to Livestrong or something. Just an idea. I've been thinking about doing a line of cancer t-shirts as well. Any graphic artists out there?

--

Okay, so it's technically the date is 2:3:7 on Doug's chemo calendar, but round 3 starts tomorrow, so I'm going to roll the calendar forward one day to 3:1:1 a few hours early. I'm a third of the way there. Only 79 days to go.

So, here we go ...
















I think I'm going to bring my laptop into the infusion room for some live blogging. Not that anything that happens in the infusion room is terribly exciting, but to give me something to do. The time lapse video of me getting the radiation was a bit fun, but time lapse video of me sitting in a recliner for a few hours while an IV bag slips slowly drains itself ... snooze.

--

Lessee ... side effects ... This week was pretty good, which was expected because it was my drug free week (unless you count caffeine ... and maybe some alcohol). Did a 13 mile hike with a friend on Sunday and did great, except for the damn blisters I got on my feet. Probably the wrong outing for trying out a pair of used boots I got for $5 at an REI sale.

A little refreshment at the turn-around point ...














(In case you wondering, I got the OK to indulge in an alcoholic beverage now and then (I think they said "on special occasions") during chemo. They don't want you drinking alcohol and caffeine during chemo because they're diuretics, and one side effect of chemo is that it can make you diarrhetic. So, they don't want you drinking booze and coffee to exascerbate the effects. I've been spared of that particular lovely side effect (for the most part), and since any time I can get out and about is a "special occasion," I partake.)

Sunday, September 5, 2010

2:3:2 - Part I

Did you see that second digit move from a "2" to a "3"? That's right ... another week down. Five down, 12 to go. I'm 30% done. Seems like I'm both just starting treatment and been undergoing treatment forever at the same time. Thanksgiving weekend, the weekend that I'm DONE with chemo (hopefully FOREVER) both feels like it'll be here tomorrow, and that it'll never come. Eighty three days to go.

--

Today is my last day of pills for round two. That's 308 chemo pills down the hatch so far. (Well, actually, I missed three doses (maybe my subconscious saying to hell with it?) so really, I've *only* taken 293.)

I think I've figured out the rhythm of how my body reacts to chemo over each three week cycle. Knowing this should help me figure out what's coming up and help plan social outings, work and the like. It also helps, you, my readers. If you're wondering how Doug is doing, you can just refer to the list below. Print it out. Carry it with you as a handy reference:

Day 1 - oxaliplatin infusion; oxy side effects kick in (temperature sensitivity, tingly hands/feets, jaw pain when chewing hard food); nauseau; insomnia (from 'roids)
Days 2-3 - oxy side effects begin to taper off, still some insomnia, Doug getting tired from being kept up until 2AM.
Day 4 - start two week cycle of Xeloda pills, oxy side effects and insomnia disappearing now
Day 5 - feeling good; oxy wearing off, Xeloda not yet kicked in
Day 6 - fatigue settles in; feel like crapola
Days 7-9 - rock bottom for the 3 week cycle - really tired, generally feeling like shit, tongue is all jacked up, hand and feet kinda sorta tingling all the time
Days 10-13 - strength slowly comes back, fatigue tapering off
Days 14-15 - What? I'm on chemo? Can hardly tell ...
Day 16 - last day of pills
Days 17-21 - enjoying drug-free living, body recuperates

There, now I'll never bitch again about side effects. I'll just point everyone to my "2:3:2" posting. Okay, well, maybe I'll still bitch. At least a little. It's my blog. I get to do what I want.

--

Saw my surgeon on Thursday. It was my three month checkup. Yep - three months since surgery. When I stop and think about it, it's hard to believe it's been three months. I've come a LONG way, physically, emotionally and mentally. But I still have quite a ways to go.

The surgeon, as expected, said that I'm doing absolutely fantastic. He marveled at my ass, "outstanding" was the word he word. Particularly, he was quite pleased with how well it has healed up. Considering everything I've read on other blogs about people having APR surgery, I've quite pleased myself. Things could have been much, much worse.

He was a bit bummed about my complaints about the on-going numbness "down there." He gave me the impression that the numbness should have cleared up by now, or that I shouldn't have numbness to this extent. I said, "well, a lot of people in the health care field tell me that the numbness can last three months, six months, even a year before it goes away." And he says, "Or, it can be permanent." Thanks. You're just a freaking ray of sunshine, aren't you. I understand he's being realistic and presenting me with worst-case options so my expectations are appropriately set, but still, comments like that tend to dampen the whole hope for a full and proper recovery.

He was happy/pleased/impressed that there haven't been too many sexual side effects. Between some numbness and not being able to get it up, he'd choose numbness. Me too. So I've got that going for me, which is nice.

--

I still have a bit to blog about from lunch with my colleague last week. After pretty much just focusing on my side effects and getting through the day to day stuff for awhile, I've been thinking a lot about big picture stuff; the whole "be your own health advocate" stuff, what to do after cancer, etc.

Another thing that has gotten me thinking and inspired me to blog a bit more is a comment to my last post by a woman who stumbled across my blog who was recently diagnosed with rectal cancer. I've read through her blog and found her story to be helpful to me. She's 37 (only 37 ... *sigh*), married, six kids and two dogs. I can't imagine the added emotional burden of having to deal with cancer with a family. I mean, on the plus side, it must be a HUGE emotional lift to know you have all those people who are so close to you, who live under the same roof as you, who are there 24/7 to support you, and will do ANYTHING for you. And yet, at the same time, there's the added emotional stress/burden/guilt of having to put them through that. I mean, as a cancer patient, you do feel a bit of guilt of having to put others through this. Sometimes I think others feel the emotional pain of this more than me. But, that's what friends and family are for, right? For being there for you when you need there support.

Anyway, here's her blog:

http://cancercaughtme.blogspot.com/

I also re-discovered one of my favorite rectal CA blogs, this one written by a woman from Appleton. I've mentioned her blog before. She's a great writer and has a killer attitude. She's a good read and I plan on continuing to follow her story.

http://imsorryforcursing.blogspot.com/

These blogs give me things to thing about and mull over, and have given me fodder for some future blog postings. Usually, reading some of this stuff plants a seed in my mind about a topic I know I have something to say about, but it takes days, weeks or months before I actually write about it. So, stay tuned for more of my musings ...

Wednesday, September 1, 2010

2:3:2 - Part II - Get Screened

Part II for today. I wanted to break this out into a separate post.

(Doug stepping up on his soapbox)

I've been meaning to post a GET SCREENED post for awhile, and last week's lunch with my colleague got me to thinking more about it. I was going to save it for the future, when I had some more thoughts about it, but then I came across this article about increased colon cancer rates in adults UNDER 40, and couldn't wait any longer:

http://articles.latimes.com/2010/aug/23/science/la-sci-rectal-cancer-20100823
http://www.am850.com/index.php?id=3812

Interesting, huh? Even though I've only had an acute interest in rectal cancer since January, I've heard lots of anecdotal evidence to support this study; doctors and nurses at the Mayo Clinic telling me I was third person 40 or younger they had seen that week, that this was a trend, and that they didn't know why this was happening (our crappy American lifestyles? eating worse and exercising less? more toxins in our food, our environment?); the doctors/nurses at my hospital in Portland saying the same thing; seeing many people under 40 on the "colontalk" forum who have had to battle rectal CA at 40; seeing articles like this:

http://seattletimes.nwsource.com/html/jerrybrewer/2011818609_brewer09.html

Here's a quote from the article about the study, "Meyer adds screening guidelines do not necessarily need to be changed because this continues to be a rare diagnosis, but to be aware of the symptoms and see a doctor if at all concerned."

Read that last sentence again - "Be aware of the symptoms and see a doctor if at all concerned." What are the symptoms? Primarily, it's blood in your stool:

http://www.emedicinehealth.com/rectal_cancer/page3_em.htm#Rectal%20Cancer%20Symptoms

So, my message, which I feel even stronger about given this new study is GET SCREENED! Please, if any of you have ANY symptoms, for ANY type of cancer, GET SCREENED. If you're at the age where the medical guidelines say you should get screened for any type of cancer, GET SCREENED. Believe me, an ounce of prevention is worth a pound of cure. This coming from a guy who has more than a few pounds of cure.

When should you get screened for various cancers? Here's a good American Cancer Society web site about screening ages for cancer:

http://www.cancer.org/Healthy/FindCancerEarly/CancerScreeningGuidelines/american-cancer-society-guidelines-for-the-early-detection-of-cancer

Guys, get a physical of 40, let the doctor put his finger of your butt. It's really no big deal. You'll never know you have it until things are well on their way. Neither of my thirty-something brothers who had polyps had any clue they were there. Cancer is a silent killer.
Ladies, get mammograms starting at 40.
Everyone, get a colonoscopy if you're 50 or older, and you haven't had one already.

And remember, these guidelines aren't set in stone. They're guidelines. Take a conservative approach to your health and demand that your doctor test for cancer if you have any symptoms (odd lumps, new or inexplicable pains, bleeding where there shouldn't be)f, particularly if you have a family history of a certain type of cancer. I personally know people younger than these screening ages who have gotten these types of cancers. Some people (or their doctors) didn't act on the symptoms (like me), and some did self screening, felt something was up, talked to their doctor about it, and wound up catching cancer early.

A number of people around me have gotten screened for colorectal cancer because of what has happened to me, which led to the discovery of polyps and kept a few people off the operating table. However, there are others I know that, even after seeing what I'm going through, still refuse to do it, even though they're past the screening age. They cite having to do the "colon prep" prior to a colonoscopy, or having to drink a nasty-tasting shake before an MRI as reasons why they don't want to do it. Suck it up and do it. If not for yourself, do for those around you - your family, your children, your friends. Don't put yourself in a situation where you wish you had gotten a regular test done sooner. You might wind up inspiring other to get screened, which might wind up saving them. You might wind up learning that your family has a genetic predisposition for a certain type of cancer, which may lead to your children getting screened at an early age later in life.

That rectal cancer study says that they don't know *why* there's been an increase in rectal CA rates. It'll be interesting to see what they come up with in future studies, but my guess is lifestyle. We Americans are fatter and exercise less than ever before. And, when you consider that, along with the fact that healthy lifestyle habits reduce the risk of cancer, it's not too hard to venture a guess as to what's going on.

The unfortunate thing is that screening guidelines are likely not to change anytime soon. I'd love to see people screened for colorectal cancer at 35. Maybe this study gets the ball rolling in that direction. Changing the guidelines is probably the best way to improve the survival rate of rectal cancer. It puts the decision to get screened in the hands of the doctors. Otherwise, if you're below the screening age, the only way you're going to discover this kind of cancer is if you actually *get* cancer and starting experiencing symptoms.

I understand that establishing (and changing) any kind of cancer screening guidelines is tough. There are many things to consider - the latest scientific studies, the health risks and financial costs of increased screening, etc. etc. Where and how do you draw the line? I read a rectal CA report where they looked at the costs and benefits of increased screening for certain types of rectal CA survivors. They looked at whether the costs of increased screening, particularly the financial costs, versus the increase in survival rate. In this particular study, they assigned a dollar value to the economic benefit to society as a result of cancer survivors being alive. I think they placed it at $20,000 per year. With that assumption, they were able to do an economic cost/benefit analysis and recommend that, in this particular case, the increased screening wasn't worth it. Would it save a few more lives? Yes. But, there was a great cost for increasing the screening for everyone.

Interesting, isn't it? I mean, you can't really argue with that kind of analysis. Would it be great if EVERYONE got screened earlier for various cancers? Sure, it would. Those outliers who got cancer at a very early age would be detected. But, it would be pretty expensive to do. The cost of health insurance for everyone would go up. It's a difficult balance. As someone who happened to fall on the wrong side of the screening fence, I'm all for increased screening, or least for increased awareness on the part of doctors and patients of the symptoms of cancer so that earlier screening is considered should certain symptoms arise at an early age.

Okay, I may be rambling a bit, but hopefully I've made my point.

Please, GET SCREENED. Listen to your body. Be your own advocate. You don't want to be in this kind of situation:

http://www.nationalledger.com/artman/publish/article_272634450.shtml

(Stepping off soapbox)

That's all for now.

Hope everyone is having a great Labor Day weekend!



Screening - side effects of screening (misdiagnosis, death, etc.)

-- Sympathy with others. George Karl