Doug 2.0

Two year cancerversary

2012-01-19T10:29:00.000-08:00

Saturday, January 21, will be my two year cancerversary (the tumor was discovered during a routine physical on the 15th, had a biopsy on the 19th, and got the news on the 21st). Two years. That's a long time. And I've been through a bit of an ordeal. I'm still adjusting to "post-cancer" life (although I don't know if I'll ever be really "post cancer", I feel like it's always there, lurking), still recovering, although now mostly it's mental adjustments - adjustments to how I view myself (it's taken quite a while to rebuild my self-esteem, and just now do I feel like I'm slowly getting my swag back), how I view my relationship with others, and how I view my place in the world (readjustment of big picture stuff - what I *really* want to do with the remainder of my life - not just in terms of my career, but how I go about my day to day living).

But two years out from diagnosis, the most important thing I want to say is that I'm still here and I'm healthy. And for that, I'm grateful.

Sleep, interrupted

2011-12-08T15:41:00.000-08:00

Been continuing to sleep like crap, and finally got a hold of my sleep doc. Here's the deal. He said my sleep test went great and I slept for 6 1/2 hours (amazing - I thought it was one of the worst nights of sleep in my life). He said that although I was asleep, I was never getting any deep sleep because my brain is waking up 26 times an hour to deal reduced oxygen flow due to snoring and apnea. Yes, 26 times an hour. That certainly sounded a bit alarming, but he said that half of the "wakes" are due to apnea, which, at 13x an hour qualifies as only "mild" apnea. He said he wasn't too concerned about that, but was concerned about the apnea combined with the snoring waking me up as often as it did. So, the punch line is that he recommends some kind of hardware to treat this - either a dental appliance or CPAP. I'm to the point now where I don't care. I'm not getting sleep and it's effecting my day to day life. I simply want a good night's sleep, which isn't asking for much. So, dental appliance it is.

OK, so this really isn't a cancer-related post, but it's a non-cancer diagnosis for something that I thought *might* be cancer-related, so it kinda counts. So I wear something at night. I think I can deal with it. Small taters compared to what I've been through with cancer.

Oh, and I root caused the source of my stupid skin reactions I get when a blood draw. It's the isopropyl alcohol wipes. Tried two of 'em on my legs, and they both broke out. So there you go. Again, not cancer-related, but kinda sorta related because I get so many blood draws for cancer tests. So there.

---

Alright. Time for the firm holiday party. As far as I know, I'm not allergic to cocktails, but just to be sure, I'll make sure I drink enough tonight to rule out the possibility the I've developed alcohol allergies since this weekend.

Cheers, all!

Doug

And, an anniversary

2011-12-07T09:51:00.000-08:00

Today marks one year since finishing up treatment! Another cause for celebration. I'll be helping myself to an extra cocktail (or two) at the firm's ~~Christmas party~~, ~~holiday party~~ end-of-year-acknowledgment gathering tomorrow.

Big smiles folks, big smiles!

HA!

2011-12-06T17:20:00.000-08:00

In a flurry of medical activity today, I unexpectedly wound up having my Year Two Scan and I'm clean! No evidence of disease! No cancer!

Here's what happened. Woke up with that pesky damn chest ache/pain feeling worse than it has since it started. And, as you know, this has been weighing on me. Cancer gives you a healthy paranoia about your health. Not necessarily hypochondria mind you, just healthy paranoia.

So, I called my chemo onc to move the scan up to as soon as they could schedule it. Then, I called my primary care doc to complain about the chest pain and they scheduled me to come in and see the doc that afternoon. He wanted me to head over to radiology right away for a CT scan to check for a PE (pulmonary embolism (blood clot), which, apparently, is not an infrequent occurrence for people have been through chemo). I then get both docs to work together to see if we can't do both scans at once, and, amazingly, they work it all out with insurance in short order.

I walk over to Legacy Good Sam from my office downtown (with all sorts of wonderful "what-if" scenarios going through my head) get the scans, walk over to my primary doc and we go over the results (yes, they turned the scans that quick). No PE. No signs of cancer. Huge relief. The doc even showed me the images, which were pretty cool. Boy, they rrrreeeaaaally took out a lot of my large intestine. I mean, wow. Not an insignificant amount. I'll try and get a copy of that image to post here.

As far as the chest pain - we still dunno. Sill unsolved. We're gonna see if it goes away on its own. At least it's not anything that involves getting biopsies, radiation or chemo.

But man, getting the scan done and analyzed, and getting the results to me that quick. I was pretty impressed. The whole thing lasted less than 75 minutes. Hats off to Legacy Good Sam.

So, I got two Christmas gifts today - my scanxiety taken over for the holidays, and another clean bill of health.

A little celebration is in order.

Motivated

2011-12-05T22:27:00.000-08:00

A good friend of mine shared a web site reporting studies that linked sleep apnea with all types of bad stuff, including increased cancer risks. A little bit more motivated to call up my sleep doc tomorrow and make an appointment. I guess the sleep doc is going to be officially added to my medical posse.

Here's my sleep test self-portrait:

More thoughts, doctor check-ups

2011-12-05T01:12:00.000-08:00

So, I pretty much beat irrigation to death in my last two posts and now I want to move on to a few other topics.

In the past month, I learned of a few rectal cancer recurrences in people I know from Poop Group and from the online cancer community. In one case, the cancer come back in the form of lung mets after 3+ years, and in another, it came back in the bone (quite rare) pretty quickly. In both cases, it was upsetting news and made my think more about my own monitoring coming up. I had my blood draw recently and my Year Two scan is in January.

(An aside. Blood draws, immunizations ... basically anything that involves putting a needle into my body now causes a pretty bad reaction. I get localized hives that take about a week to go away, and by day 3, it's pretty bad. Like bad hives. Left arm, right arm, back of the shoulder. Doesn't matter. Huge reaction. Happened again this blood draw. My allergist has no idea what it is. (Double aside. I get shots 2x/week from my allergist and I have no problems there. So how is a shot from my allergist not like a blood draw from the hospital?? I don't know. We've tried to figure this out, but can't.) Never had this before cancer, but it's something I have now. This is just one a few minor changes that have occurred to me after having gone through this, in addition to the big one. Chemo, radiation and major surgery wreak major havoc on your body and I guess secondary effects like this are bound to occur. You just adjust, learn to live with them and move on. Another change is that I have a notably lower physical exertion ceiling. When I'm at the gym and I push things beyond a certain point, the body just says, "no, we're not going there." I think I've made some improvement in this department over the past year, but progress has been kind of slow. I just get this very clear feedback from my body that I'm in the red zone.)

Hearing this news just makes me more determined to make sure I do the things that I want to do with my life in the next few years. I'm big into work-life balance, and being an attorney, that's a difficult thing to have. I'm fortunate enough to work at a law firm where the people are truly nice people, and they set the dreaded "billable hour" bar a little lower than is typical in the industry, which allows them to lay claim to being a "lifestyle" law firm. Well, that's all fine and dandy, but it's a relative. A "lifestyle" law firm is life a dull pain or a dry heat. It's still pain, it's still hot, it's still a law firm.

I asked if I could go part time, and they said yes, that option is available, but they'd like to have me stay full time, because they have high hopes for me. That was awfully nice to hear, and I hope I can deliver, but if I can't, it's nice to know that I can scale things back. So, game plan is to focus, see if I can pull of full time for a few months while keeping good life balance, and go from there.

---

So, anyways ... had my 3 month visit with my chemo onc, and my 6 month visit with my surgeon to go over my CEA results. They're fine! CEA levels are 0.9 (anything less than 3.0 is "normal"). So, there's at least no tumors in me that are causing elevated CEA levels.

I spoke with each of my docs about my lung/chest aches, and although there was some concern at me reporting this (lung and liver are where rectal CA likes to spread to), they listened to my lungs and didn't hear anything out of ordinary. I told my chemo onc that it felt like that odd pain I had during chemo that we never could figure out what it was, and he said even though we never figured out what that was, we know it wasn't cancer, so if its the same thing, we're OK (at least from a cancer standpoint).

But, he sensed I was still a bit apprehensive about it, and that we could schedule my year two CT scan sooner rather than later to ease my mind. So, I have it scheduled for the 1st week in January. Looking forward to having that scan done.

--

So, feeling pretty content with my low CEA levels, I stop my surgeon's assistant's desk to schedule my next appoint in June, and she gives me an appointment reminder I look at it, note it has a nice little summary of my health, at the bottom of which it says "cancer, rectal," "pleurisy" (the diagnosis they gave me for my lung pain/ache during chemo), and then ... "sleep apnea."

Wait a minute? What? Sleep apnea?

(Let me backtrack a bit. I mentioned here a while back that I had some serious bouts of fatigue over the summer. Just these spells that would totally wipe me out for days. My general physician referred my to a sleep disorder doc since I snore. (I've been known to clear rooms.) The sleep doc ordered a sleep study during which they hooked up all sorts of electrodes to you (I have a great picture of it -I'll post it), which make it difficult to sleep, and then ask you to sleep. It was one of the worst nights I sleep I'd gotten in my life (after the "test," I went home and slept for another five hours). I left there thinking I wouldn't be surprised if they diagnosed me with all sorts of stuff - lupus, typhoid ... )

So, sleep apnea? I had the test at the end of OCTOBER ferchrissakes, and here it is DECEMBER and I haven't heard ONE WORD from my sleep doc, and now I'm seeing "sleep apnea" on my health summary?

I asked the assistant if this was just a *possible* diagnosis, and she said nope, those were actual diagnoses. Great. Wonderful. I was a bit pissed because, one, I hadn't heard ANYTHING from my sleep doc, not even a follow-up to make an appointment, and two, I apparently have sleep apnea. I don't know much about it other than to allow you to get a good night's sleep, you have to wear some cumbersome mask, which, if that's what they're recommending, I'll do, because I want a good night's sleep again.

And you know, it's not just not hearing back from the sleep doc, or the actual diagnosis, it's just that this is ANOTHER health thing that's cropped up recently. Can't help but feel that all the health stuff this year (old allergies getting worst, new ones cropping up, my body giving out when I strenuously exert myself, and now, sleep disorders) are all collateral damage from my battle with cancer, and that my body will never be what it used to be. I wanted to come out of this mentally and physically stronger than before, but hell, I'm still trying to make it back to where I was before things want south.

Well, all I can do, really, is to call the sleep doc, see what the apnea diagnosis is all about, and do what I need to do to take care of this. As long as stuff keeps popping up, I'll do what I can to address and move on from there. That's all I can do. Be my own advocate, look out for myself, and take care of my self.

--

My one month end-of-treatment anniversary is December 7th!!!

More irrigation

2011-11-21T23:04:00.000-08:00

So more notes about irrigation ... while I'm thinking about it. I've been traveling quite a bit this year, and taking the irrigation show on the road has been OK. No problems, really. As long as you have a bathroom with hot water, and *plenty* of supplies you're good to go. Really can't emphasize having the plenty of supplies thing. I bring twice the amount of supplies I need at home, plus a few extra. Something about being on the road screws things up, and I'm been VERY glad I brought as much supplies as I did more than a couple times.

So, anyways ... all my friends know what I've been through and that I have this neat and cool front-facing exhaust port, so when I camp out in the bathroom for a good 30+ minutes, they don't question it. Staying in a hotel room is cake, but I wonder what the help staff thinks when they see my whole irrigation setup (irrigation resevoir hanging from a carabiner, the 'biner clipped to a sling swung over a shower rod, the funnel, the control valve). I tend to leave it out on purpose just to them something to think about.

Now ... take away the conveniences of modern plumbing and hot water and things get more involved. In early October, I went backpacking for a few days in the Wallowas to clear my head and do some critical thinking/soul searching (subject of a upcoming blog entry). I brought all of my irrigation supplies and gave it a go. I made it work, but it took a lot of time. Irrigation takes about 1.25 liters of water, and it took time to filter the water and get it to the right temperature (96-102 degrees F - too cold and you really cramp up, too hot - just not good for the colon). I'm an experienced backpacker and now I know I'm going to have to bring a lot of extra stove fuel on trips if I want to irrigate. And, then the actual irrigating was awkward as I had to find a place to squat/sit/stand for half an hour where everything could just kind of pour out. I dug a hole big enough, decided that I'd stand over it, and then did the irrigation. It went fine, but I'm sure had someone turned the corner on the trail while I was irrigation, they would have wondered what in the HELL I was doing. I'm sure I made for an interesting site. I was lucky that it was later in the year and that the were no 'skeeters. Having to stand or sit with a fair amount of flesh exposed to the elements would be horrible if there were swarms of mosquitos around.

Lessee .. what else about irrigating. Can't think of anything else. Never had any problems with airport security. The scissors that the medical supply companies give you with one of their supply carrying packs is small enough that you can bring it on the plane and doesn't result in a full body cavity search by TSA (which, by the way, I'd love to see them try).

But, the backpacking was good practice for how to irrigate in interesting situations. I'm considering going to Peru for a few weeks this summer, and I know I'm not going to have reliable plumbing or reliable hot water for a good portion of the trip. Not just because I think Peru may not have modern conveniences everywhere I stay, but because I'm planning to do a 3-4 hike to Machu Picchu (yeah, I know ... pretty damn cool, huh?) and a bunch of other fun outdoor stuff. And there's not going to be bathrooms/hot water along the way. You're required to do the hike with a tour operator, so I'm going to have to tell them what my "special needs" are, and see if they can accommodate. It's one thing to dig a small pit in the ground, do the deed, wipe your ass, burn the toilet paper, and then cover the hole up; but it's another thing to generate have to sit somewhere for half an hour, get 1 1/4 liters of properly-warmed water, and to generate a fair amount of plastic waste that you're likely going to have to pack out.

Okay, more thoughts tomorrow ...

670 days since diagnosis

2011-11-21T22:23:00.000-08:00

That's a loooong time since being diagnosed. Seems like it was both yesterday and an eon ago. Also, it's been 352 days since treatment ended -- almost a year. Almost time for my next visit 3-month visit with my oncologist and my 6-month visit with my surgeon, which means time for another blood draw. I'm looking forward to this one because I want to see my CEA level still pegged at "so low they can't read it," like my last two. I'm a little bit extra eager to have this draw as I'm had some dull achy pain going on in the right side of my chest the past month or so, and, after going through cancer, I think that every ache or pain is cancer rearing it's ugly head. I'm sure it's nothing as going to my chiropractor and getting adjusted along with some massage therapy in my right shoulder seems to have helped things. I have my next CT in January, which is right around the corner, so I'm eager to have that done too. Kinda wish I could have it done now (like, tomorrow) so I could now that my lungs are OK and that I don't have to go through two months of slowly building scanxiety. I know, I know, perhaps I'm a bit of a hypochondriac and that there's probably nothing to worry about, but still ... I wanna know.

So, it's been awhile since I've posted. Been busy with "real life" stuff. I have more than enough things built up that I want to write about, so this is likely to be a long one. Or a series of posts to get a lot off my chest.

First off, I want to talk a bit about irrigation. Irrigation continues to kick ass. It's been part of my daily routine now for almost six months I think. It's a hassle in that it takes 30 minutes out of my day, every day, but I get it back in spades -- it allows me to not think about having a colostomy and I go about merry way, which allows to focus on all the petty concerns I have about of real life. Other things that are nice -- since you've purged your system in the morning, it's not until mid-to-late afternoon that any gas comes out. That means no sounds for most of the day. With a bag, there are always noises. Not much mind you, but still -- noises. Oh, and I'm still wearing the Be-band on a daily basis to keep the stoma cap under wraps and to muffle noises.

After doing irrigation for a few months, my ostomy nurse said I could try irrigating every other day. I was pretty psyched for that. She said that most people are indeed able to do that, but I was skeptical. So, I tried it. About 32-36 hours in, I started having output. I was at work, and immediately I was taken back to where I was before I started irrigating. Blugh. Hated that. And it was all I could think of. I irrigated as soon as I got home and said that was it. I'm resigned to irrigating daily. Even if it were possible for me to go 48 hours after several months of "training" my colon, I'm not interested in doing that. I just don't want to have to deal with colostomy bags or having to deal with crapping into them ever again.

Now, even though I'm a big fan of irrigation, and I highly recommend it to any colostomates (yes ... there's a dumb name for people who have ostomies) who are able to partake, it's not all sunshine and daisies. Irrigation has its problems. More than a few times I've been burned by the "late return." I don't know if I'm talked about late returns before (it's late and I'm too tired to look through my blog), but it's when you think you're done irrigating, but you're really not. You start breaking down the irrigation setup, clean things up, slap on the stoma cap and *whomp* another surge of crap hits. If I'm lucky, I have a stoma cap on, on that immediately fills (A stoma cap is like an oversized glorified band aid - it's meant to provide a protective barrier for the stoma, and to collect the tiny bit o' mucus that comes out during the day. While it can collect *some* volume, it's not meant to capture much - that's what the bags are for.) A filled stoma cap needs to be swapped out immediately, so that eats up supplies (I now get a 4 month supply of caps every 3 months to account for this) and it takes more time with. Sometimes, the next surge hits before I have the stoma cap on. That's when things can get VERY messy and it takes even *more* time to clean things up as bleach, gloves and lots of paper towels are involved. Those mornings are a bit of a drag. And, on the very rare occasion, there's the double late return. I don't think I need to explain that one.

But, in any event, irrigation and I are friends.

As far as brands. I started with the Coloplast stoma cap, but that didn't really let gas out. At all. You have a stoma fart, and your cap fills up like a balloon. It's a terrible design if you have any gas at all. So, I switched over to Convatec. Their stoma caps work great. They let gas out very easily, and there's only a slight odor to it, which is fine to me. So, in a regular day, the amount of waste that I generate is one used stoma cap, one used irrigation sleeve, and one plastic blue bag. That's *much* better than the 1-2 colostomy base plates, 3-4 bags and 3-4 disposable bags if you're using a bag.

That's all I have the energy to write about for now. Long day today. Looking forward to Thanksgiving on Thursday with my friend's family. All my family is back in the Midwest, about 2,000 miles away, so I usually celebrate with friends out here.

Words for thought

2011-08-27T12:52:00.000-07:00

I think a lot about where I'm heading, where I want to be heading, where I should be heading and I seem to come across more and more quotes nowadays that make me stop and think.

The one that's got me thinking today is "Don't just survive cancer, learn from it."

Checking In ...

2011-08-19T21:15:00.000-07:00

It's been a few months since I've checked in, so I thought I'd let people know how I'm doing. In a word, good. Been riding my bike (did a couple more century rides) and my health has been good. Just had my latest 3-month blood test an my CEA levels were undetectable. Nice. I have been battling fatigue the past few months, but I think that's been due to lack of sleep, maybe not the best diet at time, and some work-related stress. Saw my primary physician to check into the fatigue issue, he ran a bunch of blood tests, and everything looked good - no anemia, diabetes, or whatever. He did ask if I snore (I do) and asked if it wakes me sometimes (it does), so he wondered if I'm just not getting good sleep due to sleep apnea. Doubtful, but perhaps. So, I'm adding a sleep doc to my medical posse.

The fatigue was a little concerning, because I would feel the same way I did when I was recovering from surgery or going through chemo. All the sleep in the world wouldn't immediately help - I'd wake with just tired, heavy limbs and just had no energy, even though I wasn't sleepy. I've had 3-5 bouts of this fatigue over the past 2-3 months and it gets old and a bit debilitating. The bouts last 3-5 days and it takes massive amounts of sleep to get through it. I'm blaming it on the chemo. Couldn't possibly be the fact that I just turned 42 and am no longer an young'un. (Could it?)

Other than the fatigue, I don't have many other side effects from treatment. I still have numbness in my feet at times, but it's getting less and less. I notice it after a long bike ride or after I've gone running. The numbness in my nether regions I thing is going to be permanent. There was some improvement in the first few months after surgery, but it's kind of plateaued. If I'm sitting in my chair all day at work and then get up and walk around, I definitely feel it. The feeling that I have down there most of the time is that of a gently pinching. Take your right hand and pinch your left foreman with your four fingers pushing up against your thumb. Not so hard that it hard, but hard enough that your left arm feels it. That's how it feels. But, that's it. No chemo brain or tingling in the hands or anything. Just the feet and my bottom-side.

I don't even think about the stoma anymore. I've got the irrigation thing down pat and I've got it down to about 25-30 minutes, which is pretty cool. I like having only two pieces of medical supplies (a stoma cap and an irrigation sleeve) to go through each day, instead of the 3-6 with a full bag system (wafer plus 2-5 bags/day). I feel better that I generate less trash and of course there's all the benefits I've discussed before about irrigating (no accidents, no walking around with a "full" bag, etc. etc.)

There are some minor annoyances with the medical supply companies, but that's nothing I can't handle. For example, the stoma caps come in boxes of 30, and I order two months of supplies at a time. Well, guess how many days are usually in a two month period. That's right, 61. So, I'm one short. Stoma caps aren't like laundry - where you can just reuse one for an extra day, you really need to have a new one each day. So, I have to order an entire additional box of the 30, and now I have 29 extra caps every two months. I could order two boxes the next month and wait until I need that third box again (in two years time I suppose), but it's a hassle to continually change my order, so I'll probably just build up a stockpile and then not reorder for a few months. A hassle, but like I said, small taters.

Went to poop group (my hospital's colorectal and anal cancer support group) for the first time in a few months. I hadn't gone for various reasons (busy, feeling pretty good), but I was in the building for my 3 month check-up, so I dropped in. I was glad I did. It was good to catch up with everyone I hadn't seen in a few months. Plus, there were some new people who had just gotten diagnosed and I got to hear their stories. Everyone's story and their response is different. I don't have much to add ("Hey gang, I'm doing great, riding my bike, etc."), but it's still good for me to keep going. I feel more centered when I walk out of there. It reminds what I went through and refreshes my post-cancer perspective.

And speaking of perspective, I really haven't been moving "forward" with my life like I had thought I would after finishing treatment. I had a mega-Things To Do List that I was going to tackle with reckless abandon this year to make up for lost time. Well, things haven't worked out that way. I'm rethinking a lot of decisions such as my job, where I live and do I even want to try and keep dating. I'm just taking things as they come and am trying not to get overwhelmed with things and take things as they come. No rush. No reason to go house hunting and waste the short summer that we get here in the PacNW, especially when I'm considering possibly relocating to another city. I was also in a mad rush to date again, but after making the rounds so to speak, I'm reminded again that you can't rush or force things and things have to happen organically. I'm alive, I'm exercising, I'm enjoying the summer here. I'm fairly happy. So there. I'm just going with it.

--

David Servan Shreiber, the doctor who wrote that AntiCancer book I've raved about died recently at 50. His death was due to a third bout with brain cancer.

http://articles.latimes.com/2011/jul/27/local/la-me-david-servan-schreiber-20110726

Rest in Peace.

--

I just had my 42nd birthday, which I was happy to celebrate. From now on, I'm happy to just be around to celebrate my birthdays. A friend pointed out that 42 is the Answer to the Ultimate Question of Life, the Universe, and Everything, according to Douglas Adams. So maybe this year holds particular meaning for me, and that I'll find some answers (not that I even know that I have questions that need answering).

--

Oh, here's something cool. I finally got paired up with a kiddo through the Chemo Pal program with the Children's Cancer Association. My kiddo is a young little boy who has a neuroblastoma that he's been fighting since he was very young. I get to meet him next Wednesday, and I'm really looking forward to it. As a Chemo Pal, my job is to just hang out with him while he's getting treatment. The CCA gives me a gigantic duffle bag full of toys and he gets to play with the toys while I'm there. The goal is to add some fun to the visit and maybe give the kid's parents a little bit of a break while their son/daughter is getting some treatment. Volunteers don't have to be cancer survivors or anything - not at all, some are but most aren't.

http://www.joyrx.org/programs/chemo-pal/

--

So, what does the next few months hold for me? I plan on having a few more months of fun before winter arrives. I have two backpacking trips in Washington planned - a weekend trip with a college friend and a solo week long trip. It's been *years* since I've gone backpacking and am I totally looking forward to this. Cycling has been great fun, but you really don't get immersed in nature. You're still on a concrete road, passing buildings, getting passed by cars, etc. Don't get me wrong - cycling is fantastic, but it's not the same as getting lost (metaphorically speaking) in the woods for a bit. Can. Not. Wait.

After that, I'm heading to Las Vegas for a class for work (some work, some play - OK, maybe more than just "some" play), and then the next week I'm off to the Livestrong weekend in Austin, TX. It's where the Livestrong foundation is headquarters and this is their big fundraiser appreciation weekend. I haven't done any fundraising - just signed up for the 90-mile ride on Sunday. Really forward to that weekend too.

Then, hopefully - it's a marketing trip to the Philippines. That'll be a great experience, and I'm hoping to tack on some vacationing while I'm in SE Asia. The plan, if I can pull it off, is to skip over to Hong Kong for a weekend and then to Burma/Myanmar for a week. But, we'll see.

So, I'm getting out there and trying to enjoy life. I don't let work get me stressed out nearly as much as I used before I was diagnosed. I realized earliest this week that after my Austin trip, I will have visited pretty much all my close friends and family this year. It's a lot of traveling since they're all scattered to the wind, but it has left my very satisfied. I've been able to say thanks to everyone who supported me through all of last year in person. Support for which I'll always be grateful and will return should the need ever arise.

Here's to health, friends, family and enjoying life!

Doug

Hey cancer - Suck It!

2011-06-16T15:50:00.000-07:00

A little over a year ago, June 2, 2010, I underwent rectal cancer surgery. It was two months before I could sit in a chair for any significant amount of time.

A little over half a year ago, Dec. 7, 2010, I finished up chemotherapy, ending ten months of cancer treatment.

Last Sunday I sat on a hard, narrow bike seat for 6 1/2 hours and rode my bike 100 miles (at altitude, as part of the Denver Century Ride) - something I've never done before in my life.

It was wonderful - plodding up the climbs, shooting down the descents, heart pounding, legs and lungs burning, the thrill of finishing.

It was for days like Sunday that I put up the fight.

Livestrong, my friends!

Year One Hurdles Cleared

2011-05-11T14:41:00.000-07:00

Hey class,

Had my one year colonoscopy today and everything looks normal. I even have pictures I could share, but won't. Let's just say that photos show a clean, healthy, happy colon (albeit a shorter one). I wasn't expecting anything less, because I've been feeling good, but this is still a big deal. With a clean scope, blood tests and CT scan, I've made it through my FIRST YEAR after cancer surgery with NO CANCER!

I'm going to celebrate by .... going back to work (my professional cup runneth over). I could write a few entries about what the deep thinking I've been doing of late regarding where my life is headed, what I *am* doing with my life, what I *should* be doing with my life, what's the point of it all, but I'm saving that for later. I'll celebrate properly when the weekend starts.

Doug

Starting to pack up shop ...

2011-04-27T22:50:00.000-07:00

Tonight I took the dozens upon dozens of cards I received from all my friends and family while going through cancer down from my apartment walls. Not because I longer appreciate them - hardly. (They'll all be saved.) But because I thought it a nice first step, mostly symbolic, toward packing up and finally moving out of this apartment. I'm not moving immediately soon - heck, I haven't even starting looking for a new place (I'll be buying something) - I just wanted to get the ball rolling. I've been chomping at the bit to get out of here.

See, when I moved to Portland in November of 2007, I got this apartment with the plan that I'd be here only a year. Now, 40 months later, I'm finally able to leave. I was about to start looking when I got diagnosed last year, and I resigned myself to staying for another year. The last thing I needed to do when I getting hit with that news was to make a long-term financial commitment. I was much more focused on more immediate concerns - like staying ALIVE.

With my prognosis looking good, it's time to move on. Moving out of here also just ties in nicely with the way various aspects of my life are tying up - finishing up cancer treatment, Tahoe passing, etc. I'm really looking forward to new beginnings and feel more excited about the future than I've felt in a very long time, including long before getting diagnosed, and moving into a new place that I plan on really settling into is just what I need.

---

The irrigation continues to work for me. This is as good as it's ever going to get for me, or for anyone with a colostomy. And you know what - it's acceptable. If I say it's awesome or great, that's all relative to where I was right after surgery, when my self-perception was completely shot and I was adjusting to the whole thing. I'd love much more to have my body fully restored to it's pre-cancerous state, but that's not gonna happen in this life time, so this will have to do.

Scope-xiety?

2011-04-26T13:50:00.000-07:00

Got my one year colonoscopy in two weeks. I'd be lying if I weren't starting to get a little anxious about it.

Some good news though - my latest blood test shows my CEA levels are still normal (1 ng/mL).

Irrigation, pt. 3

2011-04-21T20:08:00.000-07:00

I never finished talking about my irrigation trials, did I? Well, I'm about two weeks into it and I think it's great. Of course, great is all relative. Is it great that I'm sitting on the can an hour each morning forcing my large intestine to spill its guts (so to speak)? No, not really. But getting ass cancer isn't great either, and you're grateful for the silver linings to the ass cancer clouds when you can find them.

But the investment of irrigation is well worth it. I ran out of my trial sample of irrigation sleeves (think a water slide for waste to ride down from my stoma to the toilet) the WOC (wound/ostomy/continence) nurses gave me after about a week and had to fall back to the old routine. I much more prefer irrigating. It is so nice having your stoma quiet all day long. For 23 hours out of the day, you'd never know you're any different.

And, as an extra bonus, I learned that when I ran out of sleeves, I went *two days* without needing a bag. If that's what my body can pull off on a regular basis, once it's been trained in the irrigation arts, that would be fan-freaking-tastic. I think that could actually make some stoma-less people jealous. Poop once every other day and that's it? Sign me up!

--

Awfully quiet around here with Tahoe. Tough to adjust to the absence of a companion who was so woven into the fabric of your everyday life.

Tahoe

2011-04-15T22:23:00.001-07:00

My 14-yr. old labrador, Tahoe, passed away this morning. Ugh. What a terrible day. His health had been declining for quite some time, but this week things accelerated until this morning's end. But, he hung on to get me through cancer treatment, something I'll always be grateful for.

He was a great dog and I'm gonna miss the hell outta him.

Doug

More Adventures in #2.

2011-04-07T15:28:00.000-07:00

A little over 24 hours into it, and I think I'm going to like this irrigation thing. After yesterday morning's "cleansing," the stoma kept quiet for most of the day. A little bit of a gas, and a little bit of solids later in the day, but there really wasn't a whole lot. Nice. I enjoyed going through most of the day without any stoma activity. Made me feel more ... normal. Sure, it's an illusion - you're forcing your bowels to empty every morning, which isn't a visually or olfactory pleasant affair, but once that's done it seems like you're good for the rest of the day. Anything I can do to trick myself into forgetting about my condition for most of the day or to feeling like I did before I had cancer, I'm game.

Irrigation training session #2 went pretty well. I took over some of the steps, and it was pretty straightforward stuff. You fill up a big plastic bag of about a liter to a liter and a half of water, stick a little funnel in the stoma, open up a valve to let the water run from the bag into your large intestine, get all bloated up, and once you're "full," you pull the funnel out and ... well, I'll let your imagination fill in the details of what happens next. 45 minutes or so later, everything is out that's going to come out (you can kinda feel when things have all emptied out) and you go on your merry way.

Irrigation

2011-04-06T10:49:00.001-07:00

Saw Natalie, my kick-ass ostomy nurse this morning for part one in a three-part series on training me to irrigate my large intestine. Basically, irrigation is giving yourself an enema every day. It clean out the large intestine well enough that you don't have to wear bags all day long. Well, more accurately put, you don't have to worry about swapping out bags during the day - you still have to wear a little something, a "cap," because there's still a little bit of mucus that naturally comes out that you don't want to get on your clothes.

It takes about 45 minutes to an hour to do, and it went fine. Curious to see whether I find the pros (no output means no accidents during the day) vs the cons (time spent doing this).

We'll see ...

Crisis resolved (I think ...)

2011-03-31T10:41:00.000-07:00

Just got back to my hotel room. Managed to find a woman who worked in medical supplies at a local hospital who was willing to jump through some hoops for me and set me up. Kinda ... she gave me a box of urostomy supplies. (In general, a urostomy is given to those who need a new way for urine to exit their bodies (because their bladders have been removed for whatever reason, etc.)). These urostomy bags aren't exactly made for collecting solid waste, but with a pair of scissors and some guidance from my ostomy nurses back at Providence Portland (Natalie, Hillarie - you two are the best), I think I'm got something that'll get me through my two days in Los Angeles.

Everything's back to normal now (whatever "normal" is ...)

Off to the conference!

Doug

In a bind ...

2011-03-31T08:10:00.001-07:00

I'm in Los Angeles for a conference. Unfortunately, my colostomy supplies didn't make it down with me. I have no idea how that happened. Airport security went through my bag because I had a wine opener left over from another trip in it, and I wonder if I missed them not putting my supply bag back into my carry-on.

Scrambling to find a hospital nearby that carries supplies. I'm learning that not all hospitals and clinics carry them. If I come up empty, I'll be missing my conference and ordering room service for two days until my flight home tomorrow night, which could be a smelly one, folks.

Stay tuned ...

Physical

2011-03-09T20:44:00.001-08:00

Been busy the past few weeks, and have started this blog entry three times, so it's a long one, and covers a few weeks of stuff. Enjoy!

---

So I met with my primary physician a few weeks ago . He's the doc who started off last year's journey o' fun by finding the tumor in my arse during last year's physical, my first physical after turning 40, the first year that doctors are supposed to start checking for prostate problems. Well, it was 14 months since then and it was time for another check-up.

I like my primary physician. I think he's a good guy. I just wish he had found this tumor a year earlier, when I was 39. As I mentioned a while back, I knew he and I talked about my butt and symptoms that I was concerned about (rectal bleeding) the year before. Looking at the records, he only did a perineal exam (that is, he only spread the butt checks, took a look see, saw that nothing was there, and told me to carry on). I was pretty upset at him for awhile last year, but I've calmed down quite a bit. I can chastise him all I want, but that won't change anything.

Anyways, the physical went fine. He gave me some immunizations, referred me to a dermatologist for some skin stuff, and ordered some blood tests to check cholesterol and triglyceides - the usual stuff. (Got all the results - my blood numbers are actually better than they have been in years. Quite pleased with that.) Having gone through all that damned cancer treatment, and now considering myself a fairly sophisticated consumer of medical services, I didn't find him particularly prepared for the physical. Granted, my file is full of paperwork generated by the onslaught of exams and lab test I went through last year, and I really don't expect him to read every page in file (being an attorney, I'll admit that I rarely read every page in a file for a matter I'm working on, but then again, I only read what I have to in order to handle the case).

But, it was clear he skimped on the preparation side. First, he asked me if I had an ileostomy. No ... that would mean my sphincter would still be there and that we were waiting for things to heal up before reversing the ileostomy. I have a colostomy (that's in the file) and my surgeon would have reversed any ileostomy 4-5 months after surgery, which was in June (also in the file). Second, he put the gloves on to check my behind, apparently to see how my prostate was doing. *Sigh*. Really? It's all sewn up back there doc. I didn't say anything. I wanted to see how far he was going to get before realizing his mistake. Before he got too far, he asked me if they closed things up back there, and I said, "Yup." He then took the gloves off and chucked 'em. Yep, that was all in the file.

So, there you go. Doctors are people too. Sometimes they're just not on their game at work.

He said that moving forward, checking my prostate would be difficult without access to it (good point), and that the only way we can monitor prostate cancer will be checking PSA levels (a blood marker). The five CT scans that are part of my cancer follow-up will cover the prostate, which is nice, so we'll have visual data to look at to see if there's anything going on there, but after that, it'll just be the PSA test.

Anyways, after the physical ended, I couldn't help but think again that the person who is going to look out the most for me, is ME. By the time I got down to the pharmacy to pick up my new epi pens (shellfish/bee sting allergies), I'm sure my physician was already meeting with his next patient. He doesn't have the time to scour over my records, to mull over how I'm doing in between my visits. He has a slew of patients. I get 30-45 minutes of his time once a year during my physical, and that's it. I'M the one who decides what I put into my body, I'M the one who decides how much exercise I get, I'M the one who gauges how I'm feeling, and I'M the one who decides when and what type of medical attention I'm going to seek.

Oh, so I did talk to him about how I wished we had caught this a year earlier when I talked about my butt symptoms. He was definitely surprised (concerned, perhaps? - can you say "medmal"), and immediately went to the computer. His records showed that he did the perineal exam, but that that was it. I asked how we get doctors to start doing internal checks earlier, and he said that he now does internal butt checks starting at age 35, because of what he found with me at age 40. That's great for the patients who came after me, but it doesn't help me. Sure, it makes me feel good that maybe by screening people a little bit earlier, at least one other person is spared from going through what I went through, but it doesn't make MY stoma go away.

---

Saw my surgeon recently too. My CEA levels (a blood market that can indicate that tumors may be growing somewhere) dropped since my last blood test three months ago and is well within the normal range (0.7). That's good news. So with no signs of cancer in my Janurary CT scan and this Februrary blood test, I'm feeling pretty good. These two test check for against cancer and they've come up negative. I have my one year colonoscopy in May, which would pick up any polyps that could turn into cancer down the road, so that's preventive screening. And, if that all goes well, then I'll feel real good about my future prospects.

--

Physically, there's not a whole lot holding me back. Been cycling and running and signed up for a few long-distance bike rides this summer. I do still feel weak and fatigued at times, though. It's not anywhere near as bad as my chemo and post-surgery fatigue, but it does feel a bit like the chemo fatigue. I plain just get tired all over, and usually wind up falling asleep. Not sure what that is all about. Maybe I just don't have my strength reserves built back up yet.

The neuropathy in my fingers has notably reduced, but it's still pretty noticeable in my feet. It's the worst in the morning. It's like I'm wearing numbness slippers - the bottom of my feet are numb every morning.

---

Attended my colorectal cancer group this month. (Missed February because I was in Hawaii.) That group keeps on proving it's worth to me. It keeps me centered. Even though I'm "through" things, I plan to keep on going when I can.

--

Oh, I attended an information session about volunteering to be a "Chemo Pal" for the Children's Cancer Association here in Portland. Chemo Pals visit kids going through, you guessed it, chemo. You don't *have* to be caner vet to be a volunteer, but I think it might help a kid to know there's a shared experience there. A few administrative and procedural hurdles have to be cleared before I get paired with a kid, but I'm looking forward to participating in this. I've always wanted to volunteer throughout my adult life, but really, I've never done much. Just one of those things that's always on your life but that you never get too. Cancer causes one to reprioritize things, and volunteering got bumped up to the top. No more excuses. I'm making time for it now.

--

That's it for now ...

Keep on keepin' on, folks!

Back from vacation

2011-02-20T14:31:00.001-08:00

Hey gang,

Sorry for not posting for awhile, but I've been busy. Our firm has gotten a large influx of work of late (a good thing) and with me being "done" with cancer, they've welcomed another set of hands at the oars. Plus, I was working an extra bit to clear my plate for a little post-cancer getaway to Hawaii (Kauai, Maui). I've been wanting to get back to Hawaii since my first trip there in 2006 and I set it up as a post-treatment treat for myself to look forward to as I was going through treatment. It's always tough to get away from work for ten days at a time (I mean, tough in that there's always work that needs to be done, not tough in the sense that it's hard to stomach ten days in Hawaii - hardly!), but both me and my co-workers knew that I needed it. Just some time away from everything to reflect on things and restore my spirits and my soul before jumping back in to real life. A good bookend to cancer treatment.

And it was a great trip. I went by myself, and when I travel solo I usually have a pretty full agenda. I'm not a sit-on-the-beach-and-drink-fruity-drinks person. I like to be *doing* stuff. So, I set up an action-filled agenda, but knew in the back of my mind it was pretty ambitious and would allow myself the flexibility to just chill and relax if that's what my mind and body wanted. The first part of the trip was a four day backpacking trip along the Kalalau Trail on Kauai with the goal of spending three nights on the Kalalau Beach. This beach is pretty legendary among the trekking/backpacking crowd and it didn't disappoint. The beauty and scenery both along the trail and at the beach were just mesmerizing. You can google it yourself to see what I'm talking about. I took about a gazillion photos but have yet to go through them.

Anyways, the time spent on the beach was perfect. I just chilled, kept to myself for the most part, and read my book (Anticancer: A New Way of Life - highly recommend it to all cancer survivors/patients). There was a strong temptation to stay longer than my permit allowed (indeed, various people on the beach claimed to have been there for a month, a year, and even longer - there are plenty of fruit trees in the valley, and the "locals" fish, catch river prawns and kill feral goats and pigs for meat/protein), but I had limited food and wasn't about to go native. Maybe next time.

Anyways, after the hike, I was pretty pooped and spent the rest of the trip just chilling. No additional hikes or anything. Just taking in the sights, spending time on the beach, driving the road to Hana on Maui in a rented VW Westfalia camper van, and just relaxing. At times, I found myself feeling rushed when I felt I was running behind my "schedule" for the day. Fortunately, I just recognized this feeling, reminded myself what the purpose of this trip was, and just let it go. Hopefully I can keep that attitude now that I'm back on the mainland. Too often, I can find myself running from place to place during my free time because I have "things to do," which seem important at time, but in retrospect, when the weekend is over, you wonder where all the time went, and why you didn't spend more of it hanging out and having fun with friends, and doing the activities that I enjoy doing. I came back from the islands with a nice reservoir of "Zen" to draw upon when I feel life getting hectic and whatnot, and I hope to have the pool last as long as possible. I know it won't last long, but it's a nice thing to have, if at least for just a little while.

I mentioned above about being "done" with cancer. I don't think one is every really "done" with cancer after having had to endure a battle with it. For many survivors, myself included, there's the fear/concern/whatever that the cancer is lurking somewhere in the background, bidding it's time. It's like cancer broke into your house and totally trashed the place, and after you've cleaned up the mess, repaired all the damage, put new locks on the doors and windows, got a home security system, you're still concerned that cancer is still casing your joint, waiting for the right time to break in again, or, worse, that it's still in the house, hiding in the attic or something, just waiting ...

So, I feel I need to be vigilant in keeping cancer at bay by adopting a healthier lifestyle. And, that Anticancer book I mentioned is a great resource. It's the book that I spent reading during my entire trip, and now that I'm back I hope to really adopt many of anticancer habits laid about by the author. We'll see how that goes. I think that book is an important book.

The need for vigilance is a real one. I've mentioned the odds of recurrence before (the five year survival and morbidity rate is about 1 in 3), and although I'm a relatively young and healthy guy, there are many reminders that I'm not immune to this coming back. One woman, whose blog I've mentioned before ("I'm Sorry for Cursing" - a great blog, she's a great writer) and who was diagnosed a few months ahead of me (stage III rectal as well), recently learned that her cancer had spread to her lungs. It was very difficult to learn about this, especially knowing first hand what she went through (pretty much the same regiment that I did - chemo/radiation + surgery (APR) + more chemo) and that I've been following her progress for about a year now. She's getting a second opinion and seems to be keeping her spirits up, but I can't fathom what she's going through. She has a tough road ahead with chemo being the likely course of treatment and I so wish her the best.

--

The Get Your Rear in Gear 5K run is coming to Milwaukee (Oct. 15), Austin (Oct. 9) and PORTLAND (July 5) in 2011! (http://www.getyourrearingear.com/events/) I'm happy to see the event is making it's way to Portland. I had thought of spearheading the effort to make it happen here for 2013, but looks like another group has beaten me to it and taken up the reins. While I'd love to do all three, that's not going to happen. The Portland one, yeah, I'm all in, and the Milwaukee one is the same weekend as the Livestrong Challenge weekend in Austin, TX, which I'd like to attend. The idea of rallying the troops back in SE Wisconsin to join me for a 5K fun run to raise colorectal cancer awareness would be great fun. We'll see what happens. I'd be fun to make a quick trip back to Wisconsin in the fall - always a great time to visit. But don't let my absence be a barrier for anyone in these cities from participating. Get your rear in gear!

--

Okay, back to enjoying the weekend ...

Scan

2011-01-18T13:30:00.000-08:00

Just got my one-year scan results. I'm clean - no evidence of disease (NED, in the vernacular). It's a big relief. As much as finishing treatment was a big milestone, this one feels a little bigger. It allows me to mentally finish moving into that "Life After Cancer" frame of mind.

Man, sending out the "All clear!" texts and emails to my friends and family felt good. And to get all the positive responses right away, that felt even better. Thanks all ...

Saturday

2011-01-15T11:26:00.000-08:00

Slow getting started this Saturday morning. Busy week with work ramping up again to it's normal frenetic pace (it's not that the work I do is frenetic - I just sit and think and read and think and write and think some more all day, but there's just a lot of it, and it's always a struggle to stay on top of things and be focused) and I've been trying to keep up a somewhat active social calendar to "live life" and "seize the day" more. Anyways, it caught up with me a bit last night and I just crashed very early, like 7:00p or so. And I'm still a bit zoned.

Yesterday was my one-year CT scan. The scan itself was no big deal - go in, drink the nasty shake with the radioactive tracers, get an IV put in, lie down on the table, hold your breath while the machine does some test runs, get the tracers injected into you (and get a super warm fuzzy feeling all over you), hold your breath a few more times while the scan is performed, have the IV take out, sit a bit to make sure I'm not having an allergic reaction to the iodine in the tracers, and then leave.

It's the *results* I'm interested in. I get those Tuesday. My chemo onc said he could call me and tell me over the phone that everything is fine, or, if there's something we really need to talk about, we can schedule an appointment after the scan. Well, I certainly don't want to do that. I mean, I don't want to get a phone call from the receptionist to schedule an appointment for a few days out, because then I *know* something is wrong, and those days would be absolute torture. Why would a doctor even propose that idea a patient? (I guess, maybe if it's a hassle to get to teh office ...) So, I settle for a much lower level of anxiety for a known number of days instead.

I thought I'd be pretty cool about the whole thing until Thursday night. I thought about what it would be like to get the news that it's come back and how hard it would be to accept that, and I really got depressed, scared and a bit afraid. Then, after work on Friday, I noticed I missed two calls from Dr. Whiteford, my surgeon. My heart just sunk. I started thinking. Why would he be calling me? Did he already get the report from my scan, and things are so bad that my *surgeon* also wants to see me? I listened to the message and it was just a robo-call reminding me of my appointment this coming week to have the port taken out. Whew ....

--

Dealing with fatigue less and less. My fingertips are still numb (they feel like they have candle wax on them) and in the past week or so my feet have become slightly numb. I knew about hand/foot numbness, of course, and was expecting it, but I wasn't expecting anything new symptoms to appear *after* I finished up chemo. Chemo just keeps on giving.

--

When I was running last weekend, I couldn't help but think about the first few runs I did after being diagnosed. It was a little less than a year ago and I remember thinking to myself, even if I wind up with a bag, as long as I can do this (run, be active ...), I'll be OK. That thought kept me going through treatment, and there I was, almost a year later, running the same route (except this time with a colostomy) and, yeah, I was feeling OK. Actually, I was feeling better than OK. I was feeling euphoric a couple times during the run. It just felt soooo good to get out there and run again. I was (and am) feeling so good about having my heath return, and really, just being alive.

--

One of the songs I recently downloaded from iTunes and been listening to a lot is "Moving on Up" by Primal Scream. But only Sunday when I was running did I listen to the lyrics. They fit where I am right now perfectly. Thought I'd share some of them ...

I'm movin' on up now
Gettin' out of the darkness
My light shines on
My light shines on
My light shines on
...
I'm getting outta darkness
My light shines on
I'm getting outta darkness
My light shines on

One year scan coming up ...

2011-01-11T20:41:00.001-08:00

It's getting close to my cancerversary (1/15/10 - lump detected in my arse during my annual physical; 1/19/10 - CT scan and biopsy, first heard the "C" word (Doc: "I'm worried it's cancer"); 1/21/10 - yep, it's cancer (Doc: "Well, we got the biopsy results back ...") and my one year scan is this Friday. Looking forward to it actually. Want it done. Want to hear the good news that nothing shows up on the scan. Then we can take the port out.

--

Saw my ostomy / wound nurse, Natalie, today. Haven't had to see her in a few months. I was due because the skin underneath the base plate has been irritated for a few weeks. It's not too bad, and she gave me a bunch of tips to help things out - take shorter showers (the base plate soaks up the moisture, causing it to peel back, which makes me burn through base plates quicker), take cooler showers (I like scalding hot showers, but it destroys my skin - when I shower without any appliance on, that may be not good for skin under the wafer), use a convex base plate (this will make the stoma protrude from the skin a bit more, which would hopefully reduce the amount of waste that gets under the wafer, which also causes me to burn through more base plates - it's also a consequence of me putting on the weight that I have since surgery - the belly contours aren't all the same as before), and use antibacterial soap instead of regular old soap. So, it was a good trip, not only for all the good tips, but it's fun to visit Natalie and catch up while we're talking shop.

It's probably going to be another month before I try irrigating. It takes quite a commitment. It'll take 90 mins/day (or every other day) to start with, and it'll still be a few months of wearing a bag before I get my body trained and I learn to listen to my body enough to know when irrigation is complete. She said you can get the irrigation time down to 30-45 minutes at that point, and even then it's only every other day usually, so it's not a terrible draw on your free time. Then, I can play without a net - it'll be NO BAGS for Doug (unless I don't irrigate). Just a little stoma cap to catch any excess mucus ("stoma sweat," in the vernacular) produced.

--

Having a good start to the New Year. Threw the dog in the car and took a road trip down to Pasadena to meet up with some college buds and watch Wisconsin play in the Rose Bowl. Took some extra time to drive up and down the California coast, which was well worth it. Been able to exercise somewhat regularly and eating a bit better. Still tons of material to read through, but I'm off to a good start.

--

Happy Holidays

2010-12-20T10:20:00.000-08:00

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.

--

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!

Waiter ... Check please ...

2010-12-12T23:37:00.001-08:00

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.

6:3:3

2010-12-06T20:22:00.000-08:00

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.

6:3:2

2010-12-04T19:04:00.001-08:00

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

2010-12-04T16:09:00.000-08:00

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?

6:2:7

2010-12-02T23:09:00.000-08:00

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.

6:2:6

2010-12-01T08:38:00.000-08:00

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.

6:1:7

2010-11-25T07:51:00.000-08:00

Happy Thanksgiving!

I'm heading up to Seattle shortly to spend the holiday with friends, but I wanted to take the time to say thanks to all of you for your help in getting me through cancer treatment. Usually I go through the motions of saying thanks each Thanksgiving before digging into the mound of food in front of me, but this year, I couldn't be more thankful for everything I have - my friends, my family, my life - everything. The past ten-plus months have been rough, to say the least, and I can't image what it would have been like had I not had everyone's support. Every card, email, phone call, social visit and extended stay was more appreciated than you probably thought. To have such wonderful family and friends, I am truly thankful.

I'll be posting an extended "thank you" entry once I'm officially done with treatment, so I'll hold off rolling the credits until then.

Enjoy the turkey.

5:4:2

2010-11-13T14:15:00.000-08:00

My chemo calendar date should read 6:1:2, but thanks to Walgreen's (the boycott is still on), I'm now in week *four* of my fifth round of chemo. I finished up my round four drugs last Thursday, and the side effects hit hard yesterday. I woke up tired, slept most of the morning, tried to walk into work, got about halfway there, realized that I wasn't going to get anything done feeling the way I was feeling, turned around, walked back home, and slept the rest of the day. Today's not going much better. Just lying around watching college football. Had grand plans to go out and get some things done like laundry and grocery shopping, but just still feeling pretty whipped. I don't think I'll figure out the timing of these side effects. Anyways, at least I have the next week to recover. Round six starts Friday. Three weeks left as of tomorrow.

So, we're back down to 22 days.

--

Other than the fatigue, I had a pretty good week this past week. I flew back to Wisconsin to road trip to Purdue with my college buddies for the Wisconsin game. Good times. Great times, actually. Time with the guys is always good for my spirits. My health held up pretty well - only had to call it early on Saturday night. Got back to Milwaukee earlier than expected on Sunday and was able to spend time with my family. Then, my brother crashed with me for a few days while he was in town for business. We pretty much just hung out, caught a Blazer's game, etc. So, that was a lot of fun. All the time with friends and family was a good distraction from everything.

--

I've been following the blogs of a few other people who have been going through the same thing I've been going through, and read something a week or so ago that shook me up a bit. One blog I've been following for awhile is written by a woman who is a few months ahead of me. We both had the same procedure and pretty much the same treatment plan. She just had her first post-surgery MRI and a few spots showed up on her lungs. (If rectal CA is to spread, the first two places it will pop up is the lung and liver, usually the liver first.) It could be scar issue, the spots are too small to do a biopsy, so they're going to wait a few months and then do another scan. Hopefully the spots *are* just scar tissue, but that's a huge scare and a source of anxiety and concern for a few months. My first follow-up scan is in June, so nothing for me to worry about for awhile (but I'm sure I'll have plenty of anxiety as that date approaches.)

Anyways, the reason why I bring up this woman's scan results is because it showed me how much my attitude toward my cancer has changed since surgery. Before surgery, let's face it, I was pretty scared, and I wanted to do everything I could to increase my chances of being completely cured. Chemo, radiation, meditation, diet, exercise - you name it, I was doing what I could. But now, coming up on four and a half months after surgery, physically pretty much healed up, and, by all accounts, all the cancer out of me, I'm feeling more and more like this is something that I can put in my past and no longer something that I have to worry about. Putting this in my past is something that I *want*, don't get me wrong, but I can't let my vigilance drop. After I'm finished up with chemo I can't continue down the same path I was on in life, I have to continue down a different path entirely. I have to take better care of myself, both physically and mentally, than I did before. I have to hold myself to a higher standard than I did before, and to a higher standard than those that haven't had cancer. There's still that 1-in-3 that this shit comes back statistic that's looking me in the face, and there's a lot I can do to improve those odds, particularly in how I treat myself, how I live. I guess I'm making a deal out of this, because I feel like I'm been letting my diet kind of go to hell and exercising less and less the further I get away from surgery. But, I'm cutting myself some slack because I *am* going through chemo and I'm eating what I eat to keep my stomach settled and exercise as much as my body allows. I don't know ... I guess I'm just concerned/afraid that I'm going to let myself lapse into the same old health habits that I had before, and I want to, I need to be better than that.

5:2:6

2010-11-03T20:40:00.000-07:00

I have to reset my chemo countdown clock. Why? Because of freaking Walgreens. I called my oncology to schedule my next (and final!) infusion appointment and felt I should mention the extended delay in getting my pills since going ahead with my infusion on my scheduled day would leave me with ZERO recovery days between rounds, and I thought the doctor might have a problem with that.

He did.

So, we're going to give my body the recovery time between rounds that it's supposed to have and push out round #6 by a week, which means I finish up another week later than planned.

So, thank you Walgreens for postponing the end of my cancer treatment by a week. It's only a week people, but trust me, having to extend cancer treatment even one more day pisses me off. I think it'll be awhile before I refill a prescription or shop at Walgreens again.

Something like 33 days left ...

5:2:5

2010-11-02T09:43:00.000-07:00

Just realized that it's been five months since my surgery, as of today. Time flies. I look back at how far I've come mentally and physically, and how far I still need to go. Mentally, the bag and I have reached a peaceful coexistence (for the most part), and physically, I've done enough activity now that I know that I'm going to be able to do everything I've enjoyed doing in the past. It'll take some work to be able to physically perform at my former peak level (I can't express how unflexible I still am), and it may be that my peak is somewhat reduced from before. I've heard this from both my surgeon and others who have gone through this procedure. Being under general anesthesia for 7-8 hours and going through a major surgical procedure like this can apparently have a lasting impact on the body. Plus, it could just be that I'm getting a little older too - I'm not 20 anymore. But that's OK. It's not like I was making a living as an athlete or anything. I'm just a weekend warrior, at best.

--

With the calendar rolling over to November, I'm happy to say that I'll be finishing chemo THIS MONTH. Assuming that Walgreens can get me my drugs on time (something that they've proven they're amazing inept at doing), I'll be done on the 28th.

Only 26 more days ...

5:1:6

2010-10-27T08:32:00.000-07:00

I know I'm almost done, but that doesn't mean I'm getting used to these damn side effects. The side effects suck each and every time I get treatment. It probably didn't help my cause that I didn't take my steroids for the 2-4 days after infusion like I'm supposed to, so I guess it's my own damn fault.

Silver lining - one more round. I'm not looking forward to yet another round of this crap, but at least I know when the ride is going to stop so that I can get off. There's a person in my colorectal cancer support group who is stage IV and is on the same drugs I am, but that person may be on them indefinitely. They get scanned periodically to see how the drugs are doing, and they adjust the medication from there. The drugs seem to be working , which is FANTASTIC, but it is must be mentally terribly difficult to be facing that kind of open-ended treatment. I mean, the drugs are a lifeline, and considering that that person is fighting for theirlife, it's a wonderful option to have, but that doesn't make the struggle any less difficult.

So, here's to the people who are facing a longer, tougher struggle than I am -- keep fighting!

5:1:4

2010-10-25T08:49:00.000-07:00

Started Round 5 on Friday (it's getting harder to find these boxing card girl images as the round count goes up ...). My friend Wendy hung out with me for most of the session, which was great. These infusion sessions are quite boring, and Friday the place was empty, so we had run of the place. I was supposed to have a big group of guests visit me for Round 4, but since the chemo team didn't have their act together, there was no infusion session for them to visit. Which was too bad, because they all had "harem" headgear ready to wear for my chemo entertainment.

So, for Round #5, Wendy was my harem of one ...

So, now it's three days after infusion, and the chemo drugs are starting to kick in again for round #5. Second to last time I have to deal with this. Another week or so of grinding this out, then it's time for the last round.

34 days to go ...

4:3:4

2010-10-18T22:38:00.000-07:00

I'm pretty much through battling the cold, although some remnants still linger. I never had a fever that put me in any kind of danger or anything, just felt like a normal cold, which is good. Felt well enough to go hiking yesterday in the Gorge. It was good to get out. The chemo side effects for this round are reducing, but the start of Round 5 is lurking right around the corner (this Friday).

41 days left ...

4:2:7

2010-10-14T18:22:00.000-07:00

I'm battling a cold. First time I've been "sick" since my cancer diagnosis. Something's going around Portland, and I finally caught it. Probably didn't help that I was at a concert for a little bit Tuesday evening with 350 other people in close quarters.

Of course, getting any kind of cold while on chemo is a cause for heightened vigilance. With a suppressed immune system, my body can't put up the fight that it usually doesn't. Fortunately, things haven't gotten to the point where I need to run off to the doctor's office to get antibiotics or anything. Just staying at home and getting even *more* rest than usual.

Nothing else new to report. Just weary of the daily grind ...

44 days to go.

4:2:3

2010-10-11T11:26:00.000-07:00

Bad chemo brain today ... I feel like Hal in 2001: A Space Odyssey when Dave Bowman was pulling out his memory modules.

"Daisy ... Daisy ...."

4:2:1

2010-10-04T21:29:00.000-07:00

Again, jumping the gun a bit to roll the week counter ahead a little bit early, but it's only Thursday for another hour or so ...

--

So, I finally had my infusion on Monday (same dose - 20% less off from round #1), and *finally* got my pills on Wednesday (Walgreen's Black Ops division hasn't been terribly impressive - they got the first round right, but that's been about it). So, now that I'm back on drugs, I started the slow decline begin today. Was a little constipated the past few days from the infusion. I only mention this because there's a silver lining - if I'm not going, I'm not changing the bag, and if I'm not changing the bag a couple times a day, I feel pretty normal).

Felt *great* Mon-Wed., but ran out of steam mid-afternoon today and had to call it a day - went home and crashed. I feel a less "guilty" about calling it a day (yeah, I know, it's chemo, it's cancer treatment - and out of all the cards a person should be able to play to get out of stuff like work, this one is up there ... but still) after speaking with the case manager for our long term disability insurance carrier. So, with our provider, a person can get short term disability for 12 weeks, and I burned through that pretty easly. I was out six weeks full time after surgery, and have been working intermittently since then. Disability is only paying a little bit as I'm working "most" of the time. It's not a *huge* benefit anymore, but it's still one that I am very pleased to have.

Anyways, when the case worker called to discuss my case, when I said that I'm still going through chemo, she said "stop there - you don't need to tell me any more." She said that cancer patients receiving chemo are considered to be disabled, from their point of view - they understand the fatigue and brain fog that chemo patients go through. That was good to hear. One less battle to wage. The insurance company also understands that it can be another 2-3 months before a person is 100% back to "normal" (whatever that is) after chemo ends. That's good. That's exactly what my nurse said on Friday. So, while I finish up treatment the Sunday of Thanksgiving weekend (51 days from now), I'm penciling in March 1 for first feeling 100%. Seeing as I started treatment on Feb. 22, 2010, that totally backs up the statement I heard from a lot of people when I was first diagnosed - you can expect cancer to take a year out of your life.

And then some.

--

I called my ostomy supplies provider (Coloplast) to complain about them only putting in 1/2 the number of disposal bags ("blue bags") as the number of colostomy bags. I think I've comments and this insanity before. I left a bit of a nasty-gram on their customer service website to complain, but didn't really didn't expect anything to come of it. Well, today, a package appeared on my doorstop today containing 750 blue bags! Wow! Awesome. The squeaky wheel guts the grease (although, its a little disappointing that the squeaky wheel has to make noise to get something that, in the main, isn't particularly fun or exciting ... just little blue plastic bags to hold used other bags full of crap).

Getting 750 blue bags in the mail made me do the math again. On average, I chuck about three bags in the wastecan a day. That's about 1,000 a year. I've said it before here, and I'll say it again - that's a lot of waste (both in terms of the plastic bags, and what they're holding). If I live 40-50 more years (planning on it), that's 40,000 - 50,000 bags! Multiply that by the number of people who have colostomies (a Mayo doc told me 3 million plus) - that's BIG numbers. And, a lot of money for the people who make these things. It's worth sending a year's supply to blue bags to a guy who complains.

--

That's another interesting little factoid - 3,000,000 people with colostomies. I'm assuming that's world-wide (I don't think 1 in 100 people in the US have one). Yet, can you name one well-known public figure who admits or is known to have one? I can't either. And I've searched. Well, a few names come up, but nobody who has really been in the lime light (one of George W. Bush's sons?) Honestly, I can't really blame people for not wanting to step out into the limelight and promoting the cause. I mean, it's already a big enough hit on your self-image and pride, and then, when you've got *your* head on straight finally, and you're to the point where you're dealing with this on a day-to-day basis, you have to deal with *others* who have just heard the news getting their head around it

Me, I've been pretty open about this at work. I'm kind of a wear-your-heart-on-your-sleeve type of guy, and, I'm prone to say what's on my mind for the most part. So, as I've been going through this whole ordeal, I've been sharing most of it with my friends and co-workers to varying degrees, and they've been coming along for the ride. As I've said before, almost to a person, whenever I first made mention that I may wind up with a "bag", the initial response, almost to a person, was pretty visceral - a wince and a usually an "ewww" or "uggh". And that's fine, that's normal, that was my reaction ("anything but that"). But you know what, I'm coming around, and I've noticed that most of my friends and co-workers have come around too. I have everything down to where nobody notices it, and it makes very little noise, so nobody is really aware of it. And when there is a little noise or something, we usually just joke out, acknowledge it, and move on. No big deal.

But, moving forward, as I look to put treatment behind, I really don't plan on telling new people I meet about it. I don't want to be judged any different because I have this condition, so why go there? In fact, only people I spend a lot of personal time with (close friends, family, sig other) would possibly be inconvenienced in any sort of way, or become aware of this out of my normal course of activities. I don't know that a public figure, or anyone else, would just throw this condition out there about him for everyone to know about. Maybe I'm wrong. Maybe I'm just not there yet. Not that I want to be any kind of spokeperson or anything.

4:1:3

2010-10-03T07:36:00.001-07:00

I don't know if I can technically say I've started round 4 yet, because I never got my drugs on Friday, but I'm going to say I've started it anyways.

So, my appointment was at 1:15, and after a quick visit by the nurse practitioner, I'm back in the infusion room getting my blood drawn at about 1:40 or so. I get some of the results back in the normal time, about 1/2 an hour, and they tell me that my white blood cell count is low. (I think the normal range is 3.5 - 10.0 whatevers, and I'm at 3.4). When it gets that low, they look at another number, neutrophils, I think, to see if they need to adjust the medication. Well, apparently when the white blood cell count is that low, they have to do this additional measurement by hand (put the slide under the microscope and count). So, time passes ... 2:30, then 3:00, then 3:30. I'm told they can't find the lab person and that I can come back Monday if I want. Great. I've wasted two hours sitting here in this damn infusion room, which isn't exactly Disneyland, or, I can wait until these guys get their act together, find the lab worker, and then sit there for another 3+ hours as I get my infusion. I decide to say screw it and tell them that I'll see you guys on Monday. As I'm getting ready to leave, they find the lab worker (she was on lunch break ... (*really*??? you guys can't coordinate lab worker coverage over lunch break? or have her count the little thingys on the slide *before* you she goes to eat her sandwich??)). At least I won't have to wait around for blood work on Monday ...

That's two visit in a row where I've waiting 90+ for health professionals. And what have I gotten out of it? A $5 Starbucks card. From now on, I'm not seeing the doctor until they do the blood draw. Waiting around and sitting on my ass in infusionland for 30-45 minutes after a blood draw is senseless when I could see the doctor *twice* during that amount of time.

Silver lining - I get to feel good all weekend, which is great because I have some out of town friends from my Austin days in town. The cloud - I'll start my Xeloda and get my oxalyplatin on the same day, which will probably lead to all sorts of fun enhanced side effects. Joy.

3:3:7

2010-09-30T15:31:00.001-07:00

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.

3:3:4

2010-09-27T22:18:00.001-07:00

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.

3:3:3

2010-09-26T23:09:00.000-07:00

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.

3:2:7

2010-09-23T23:00:00.000-07:00

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.

3:2:4

2010-09-20T22:44:00.001-07:00

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)

3:1:6

2010-09-15T21:50:00.001-07:00

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.

3;1:4

2010-09-13T21:42:00.000-07:00

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

2010-09-13T00:52:00.001-07:00

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

2010-09-13T00:23:00.000-07:00

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.

3:1:1

2010-09-10T22:53:00.000-07:00

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.

3:1:1

2010-09-09T21:14:00.000-07:00

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.)

2:3:2 - Part I

2010-09-05T09:50:00.000-07:00

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 ...

2:3:2 - Part II - Get Screened

2010-09-01T05:15:00.000-07:00

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

2:2:4

2010-08-30T19:51:00.000-07:00

Long entry today ...

--

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 ...

--

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.

--

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.

--

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.

R2:W2:D1 - Halfway to halfway done

2010-08-26T13:53:00.001-07:00

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.

R2:W1:D4

2010-08-23T19:04:00.000-07:00

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.

---

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.

Steroids

2010-08-22T02:46:00.001-07:00

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

Round 2, Week 1, Day 1

2010-08-20T17:34:00.000-07:00

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.

Round 1, Week 2

2010-08-12T23:58:00.000-07:00

... 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.

I'm back (kinda) ...

2010-08-07T16:55:00.000-07:00

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).

2010-08-05T20:42:00.000-07:00

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.

Two words

2010-08-04T15:06:00.000-07:00

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.

---

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.

--

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.

--

Went large yesterday

2010-08-01T09:40:00.000-07:00

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.

1 down, 5 to go ...

2010-07-31T01:22:00.000-07:00

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.

--

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?)

--

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.

--

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.

Drug free living

2010-07-29T07:45:00.000-07:00

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.")

--

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.

Coast

2010-07-24T23:38:00.000-07:00

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

2010-07-24T10:15:00.000-07:00

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.

--

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.

Chalkbot

2010-07-21T09:15:00.001-07:00

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

Easy come easy go

2010-07-20T21:59:00.001-07:00

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.

Some sense of normalcy

2010-07-19T23:31:00.000-07:00

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.

Coasting along

2010-07-17T23:47:00.000-07:00

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.

--

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.

--

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.

Exercise

2010-07-11T23:17:00.000-07:00

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.

---

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.

---

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.

Looking around the corner

2010-07-02T18:42:00.001-07:00

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.

--

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.

--

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.

---

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.

--

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.

Plateau

2010-06-27T01:40:00.000-07:00

Another late night posting ...

Well, back down to one family member visiting. Dad and Ellen left this morning after a week's visit. It was wonderful that they came out to visit and it seems to have passed by in a blink of an eye. It was great spending time with them every day - watching movies, playing cards, making brief excursions outside the apartment to show them around downtown. The visit was extra special because, living 2,000 miles from them, I don't get to see them as much as I would like.

I feel like I've hit a plateau with my healing. As much as I try, I still can't go through a day without grabbing the bottle of pain killers. I've tried it, but sometimes, it just hurts too much to stick it out. Could I do it? Yeah, but what's the point. When I'm in pain, I get pretty short and irritable and am not really the greatest person to be around. I just want to lie down and not move. It's all very un-Doug-like.

Today was a good example of my wishful thinking that I'm healing faster than I really am. I spent about two hours driving around in my car and running various errands. This involved a fair amount of walking and sitting in the car - both of which stirred up the hornet nest. I definitely bit off far more than I could chew. About an hour into it, I really started feeling uncomfortable, and by the time I got back, I was completely wiped. I got into the apartment, dropped on the couch, and slept for two hours. So, I've still got to take it easy (which is also very un-Doug-like, damn type-A personality.)

The recovery plateau is frustrating because there are a couple of things that I *really* want to see improvement on. If the surgeon tells me that any of these things may wind up being permanent collateral damage to cancer surgery, it'll take awhile for my to accept this "new normal".

(TMI warning.)

First, I really want my ass to heal. Everyone here knows that they took out my rectum (still getting my mind around that one) and gave me a new exhaust port during surgery. This means that the old exhaust port was no longer needed, so the surgeon sealed it off. I'm sure there are various ways to do this, but the approach my surgeon chose involved suturing a skin flap between the two butt cheeks. That's fine, but the problem for me right now is that this little flap is still a bit swollen and extends out past the butt cheeks. My ass looks like a hamburger bun with an oversized patty. And it's this flap that hurts when I sit. What I'm hoping (and expecting) is that, eventually, all the swelling, or whatever it is, goes down, and this flap gets tightens up so that it's just two butt cheeks and no flap back there. But right now ... it feels like I'm wearing a flesh thong.

Second, I want to regain all the feeling in my pelvic region. Pretty much everything in the perineal region (i.e., the taint, gooch, ABC) is completely numb. Can't feel a thing and I'm unable to fire any of the muscles down there. It's like the nerves have all been severed. My urologist says that this is not the case and that the nerves in that area have likely been traumatized due to the surgery (he says they were "stretched out"), but that he expects everything to come back on-line in time. I sure hope so.

So, that's where I am. I was watching a Tour de France preview show today on Vs. and they were interviewing Lance Armstrong. He was sitting there wearing his Livestrong bracelet, Livestrong T-shirt and Livestrong shoes, looking fit as hell. I should have felt inspired, but I didn't. In fact, I found myself wanting to wring his neck - he doesn't have a freaking bag, he didn't have his rectum and a good portion of his colon removed. Screw him.

I was surprised by my reaction and thought about why I reacted that way and realized that I'm just jealous that he's done fighting his battle, while I'm still in the middle of mine. He's sitting there in that interview all healthy, and here I am lying on side all day long waiting and waiting and waiting for things to heal up. Why can't I be all healed up? Then I thought more about his journey, and how, although not the same as mine, his was still pretty damn brutal (Hello ... Stage IV cancer? brain surgery?), and how I'm sure he had his doubts at times too, and that I need to stop my bitching and get right in the head again. Even if everything doesn't heal up the way I want it too, I'm going to deal with it and move on with me like. So, tomorrow's agenda includes spending some time surfing the Lance Armstrong Foundation web site and thumbing through his first book for a little motivation and whatever else I can find to help replenish my positive attitude reservoir.

Some progress today ...

2010-06-23T22:20:00.000-07:00

Today I walked downtown to meet a few co-workers for lunch. The walk, although narcotic-fueled, was pretty comfortable (I even made the walk back to my apartment) and I was even able to sit during the whole lunch. I had to improvise a bit with the seating to make it tolerable, though. I used two chairs and planted one butt cheek on each so that the crack of my ass (the source of most of my pain right now) wasn't resting on anything. I'm sure this drew a few stares or laughs, but I didn't care. I was quite happy to be able to be in a sitting position for half an hour and hang out with my friends like a normal person. I think I'm going to need one of those donuts for my office chair for a bit when I get back to work.

Although I'm still taking the vicadin for pain relief on occasion during the day, I swear I've built up a tolerance to it. They're almost like tic-tacs now. The pain does go away for a bit, and I do get a bit drowsy, but I no longer get any kind of buzz when I take it. Probably best - keeps me taking the drugs for the right reasons. Surgery was three weeks ago (I think I've made awesome progress, even though there's a ways to go), and I've been on pain killers pretty much the entire time. Not sure what the long term effects of vicadin are ... Based on what happened to Brett Favre, an experienced vicadin user himself, twenty years down the road maybe I'll find myself jerking around my employer for a few months every year about retiring, then jump around to a few other law firms and jerk them around a bit for a few years.

Yeah, three weeks since surgery. I think I've made great progress even though I know I still have quite a ways to go. I'm still disgruntled with the whole bag thing, but every day I'm becoming a bit more comfortable (well, maybe "tolerable" is a better word) with the situation. I can look at my stoma without it bothering me and I can look at my body in the mirror, with the bag hanging off my abdomen, without it bumming me out. Still experimenting with all the different bag variations. Right now, I like the two-piece closed end opaque bags with the vents. Gas build-up is a pain because you have to constantly burp it, and the more the bag is full with gas, the more noticeable it is. One particular supplier has a vent that does a good job of letting gas out with eliminating the odor - I hardly smell anything. That's a big plus. So, I'm narrowing in on a low-profile, low odor solution that may be what I wear day-to-day.

Once I start getting active again, we'll have to figure out a system that allows me to wear a 25 lb. backpack around my waist. The waist belt on all my packs goes right over the stoma, so I need to experiment with some protective hardware. My ostomy nurse says there are some solutions that are used by the military. Army soldiers carry heavier packs than I plan on carrying, so if it works for them, it should work for me.

The full-on parental visit is going fine. I taught everyone how to play Euchre (a midwestern card game), and that's been keeping us entertained the past few nights.

Wall to wall

2010-06-21T00:02:00.000-07:00

My Dad and his wife arrived yesterday. They're here for a week. I'm glad they're paying a visit. My Dad isn't the biggest fan of long airplane rides, so for him to make the trip is a big deal and it meant alot. It's good having him here, especially for Father's Day. I can't remember the last time I was with my Dad for Father's Day. 20+ years?

With my mobility limitations, most of the time spent visiting with my Dad will be in my apartment. With four adults (Mom is here until the 30th) and a dog, it's a bit crowded for my taste. But, we're making do. Yesterday, we ventured out to a local pub for dinner. I thought we'd just order some food to go, but once we got their and I saw they had padded booths, I thought I'd give sitting down a shot. It was tolerable, but even with throwing down my fleece jacket on top of the padded cushion, I only lasted about 30 minutes, and then I had to leave. Today we ventured out again and took Tahoe (my dog) for a short walk in one of the local parks, and by the end of that walk, along with the car ride there and back, my ass was angry again and I got pretty grumpy. When I got home, I popped a few pain killers and crawled under the covers for a few hours.

Despite the painful butt outings, I do thing the pain level is receeding. I'm having longer and longer stretches where I don't need to take any pain killers at all. It's becoming more discomfort and aches then actual pain. But, the amount of pain I'm in is still a function of how active I am. The reduced pain is a good thing as my hydrocodone prescription from my surgeon ran out today. But, don't you worry my friends. I have plenty of vicadin leftover from chemo to get me through the remainder of surgery recovery. Whether or not I need anything more for my upcoming second go round with chemo, I don't know. I've been reading a bit on the on-line forums about how most people really have trouble with the FOLFOX chemo regiment, but most of it seems to be how it just completely wipes you out - no strength to do anything. That isn't something that requires pain meds to get through, just rest.

With surgery now 2.5 weeks behind, that means post-surgery chemo is only 3.5 weeks away. Right now, the thought of enduring four more months of chemo is very disheartening. Dealing with surgery and putting up with the slow recovery has really depleted my mental and physical reserves. I'm getting a bit tired of putting up the good fight and just want everything to be done. I'm know I'm still pretty close to surgery and I'm hoping that by the time chemo starts, I'll be in a much better mood, and I'll summon the strength to battle through it, but right now ... ugh. Don't get cancer people, just don't.

Here's a good photo showing what I've been doing for pretty much the past 10 days - lying on a futon and watching TV with Tahoe keeping me company. Could there be a better companion duringrecovery than a 13 year old labrador retriever that loves to curl up at your feet while you're watching TV all day? I think not.

Cabin fever

2010-06-19T01:02:00.000-07:00

Today's weather was fantastic. Too bad I spent the vast majority of it inside, lying on my futon, watching TV (freaking Mali referee - the U.S. got screwed). The past few weeks the weather has been kinda crappy - lots of rain, clouds (this is already the wettest June on record, which, for Portland, is saying alot), so I haven't minded being all cooped up. But today was a reminder that summer is almost here and that not being able to do all the things that I love to do during the brief window of good weather is going to drive me NUTS. You can pretty much count on July, August and September as being awesome weather months, and that's my time to really get out amongst it. Not this year, though. This year I'm preoccupied with the whole battling cancer thing. I have no problems with sacrificing one summer of outdoor fun to make sure that I have another 40 or so to enjoy.

I wasn't completely apartment-bound today. I think my Mom was getting a bit bored with walking around the local neighborhood, so I drove her up to the rose gardens in Washington Park (if you're into roses (me ... not so much), this is your place). I really shouldn't be driving because (1) it still hurts to sit, and (2) I'm on narcotics. However, me driving in pain and while on drugs is a better alternative than being a passenger in any car that my Mom is driving. It's not that my Mom can't drive, it's just that she can get quite nervous and anxious when she does drive, and this just gets exacerbated when she is driving in a new city. And when she does get unsure of herself, it can lead to me having a white-knuckled death grip on the passenger side "oh shit" handle. So, really, drugs and pain aside, it's really better that the driving be left to me.

The rose garden was great, but I wasn't into it because the short drive over made my ass angry, and that put me in a grumpy mood. When I got back, I took more pain killers, and buried myself under blankets for the rest of the day. It took pretty much the whole day to get right again (that's why I'm blogging at 1:15A - slept a bunch this afternoon and now I'm wide awake). So, was driving the rose garden worth it? Probably not.

Did some experimenting with the bags today. The wafer I had been wearing for the past few days was itching like MAD, so I had to take it off. The itching was due to my hair growing back under the wafer. I can see that I'm going to have to continually shave the area around the stoma. Today's bag combo is a 2-part system with a closed-end bag. These closed bags were completely opaque. Not being able to see into the bags is nice, very nice. I think this is going to be the way to go for me. Unfortunately, the closed-end bags have a vent which allows gas to escape so that the bag doesn't balloon up with gas and you have to swap it out before it's full of waste. While the vent is a good idea in theory, it's not so great in practice. Even though there's a charcoal filter in the vent to absorb the smell of poo, it still smells. Not outrageously so, but enough that if you were out with your friends, somebody would likely say something. I might use these when I know I won't have company around, but it's not something I'll wear to work.

While I was tinkering around with the bag options, I called my insurance company to see how much of the ostomy supplies they covered. After my deductible and coinsurance is paid, they'll pay out at 100% PERCENT! This is awesome. At forty years at a couple hundred bucks a month, this could easily be close to six digits in supplies over the remainder of my life. My insurance kicks ass. Goes to show what a good group of people I work for. Even with the recession, the partners at my law firm didn't waiver from their philosophy of treating people right.

My Dad and his wife are coming in tomorrow for a week's visit. Looking forward to it, love my Dad, but a little concerned about what we're going to do for a week. I can't exactly play tour guide given me mobility constraints, so we'll all be spending a lot of time in my apartment. Great. I have a very small apartment, which is already growing smaller by the day with my Mom staying with me, and to have two more people in here for a few hours a day, I'm hoping that everything runs smoothly. We'll see how that goes. Ahhhh, family.

Pants on the ground, Pants on the ground

2010-06-17T21:52:00.000-07:00

Once my bum heals up and all the swelling goes down, I've got to get me some new clothes. I'm pretty much swimming in my pants. Going into surgery, I knew I was going to lose a bit of weight, not only because they were going to take out a bunch of stuff (how much does a rectum weigh? a foot and a half of colon?), but also from not being able to eat anything for awhile. Only in the past few days has my appetite truly returned. I've been able to wear jeans (instead of sweats and 3XL hospital pants) the past few days while I'm out and about and they're baggy as hell. My scale says I dropped 15 lbs since surgery. That's a good thing. All the studies say that rectal CA patients need to get lean and mean to help keep cancer at bay and I wouldn't have used the words "lean and mean" to describe me prior to surgery.

Today I walked downtown to take care of some small errands but mostly to see how well I'd do on a longer walk. For the most part, I did pretty well. I was able to walk at full speed with a normal gait without pain until I got downtown. Then I didn't feel so hot. I had planned to walk downtown and back, but wound up taking the streetcar to get back to my apartment. I was amazed at how much a mile and a half walk completely wore me out. When I got back home, I completely crashed. My recovery is really progressing well, but today made me realize I have a long ways to go. Even though the walking is going well, I'm still generally in pain, and I still can't sit at all.

----

Some notes about the surgery and my hospital stay. I like to write about stuff as it happens, otherwise it feels kind of forced. But, I wanted to capture a few things so that I don't forget what happened. This blog isn't just for all of you, it's for me as well. I don't want to forget about all the things (bullshit, pain, suffering, etc.) I went through to beat cancer. I never want to take my health for granted again, and I want the record to show what I had to go through to beat it. I want "battling cancer" Doug to inspire "post cancer" Doug when "post cancer" Doug needs to be inspired. And, knowing me, I know "post cancer" Doug will need to be inspired at times. So, here are some surgery and hospital stay notes.

For those of you who have had surgery requiring general anesthesia, you know that there's absolutely nothing you remember about surgery. One second you're in pre-op and the next you're in post-op. I remember the anesthesiologist/bartender adding the happy juice into my IV and then *immediately* feeling it kicking in. I vaguely remember being wheeled into the operating room and thinking to myself how my surgeon looked like the death star operator guy from Star Wars (see below) with his face guard coming up and out from this neck. (Hey, heavy drugs were starting to take effect ...)

The next thing I remembered is waking up in post-op, shivering violently. Don't know if this was because of the anesthesia or because the room was super cold. I remember them trying to wake a guy named Ron next to me, and Ron being pretty beligerent about the whole thing and fighting the nurses. I remember wanting to get away from Ron. I also remember looking at a clock that read 7:30P and thinking "holy crap, I was in a surgery for a long time, what went wrong?" They wheeled me into the operating room at about 11:15A, so I was out for quite a long time. They told me they had the operating room reserved for me for 5.5 hours, so I was in there for a few extra hours. Eventually, I'm going to get a copy of my surgeons records for my file, but I think switching over from LAR to APR and having to get a blood vessel to stop from bleeding are at least two reasons why things took longer. Maybe I really don't want to know any more than that.

I also remember hearing nurses uttering the word "colostomy bag" a few times. I really couldn't be sure that's what they were saying, but that's what it sure sounded like, but I don't remember being dejected about it. I was too wiped out about that. I figured I'd just have someone else verify that for me later. They then wheeled me to my room where my Mom and Wendy were waiting for me.

Obviously, the first few days were a blur. I don't remember much as they had me on a dilaudid drip. According to Wikipedia, Dilaudid (hydromorphone) "is a potent centrally-acting analgesic drug of the opioid class. It is a derivate or morphine ... " I was able to get a dose of dilaudid whenever I pressed a button, but I wasn't able to get more than one dose every ten minutes. Patient controlled administration of drugs sounds like a good idea, but really, it has one glaring shortcoming. If you're in serious pain and you need the pain meds to keep the pain under control, which is what they want you to do, you're kinda screwed when you fall asleep because you can't push the button when you're unconscious. Right? Didn't anyone think of this? For me, when I was eventually able to fall asleep, this led to me waking up in pain every hour or so, just so I could push the button to give me more drugs so I could go back to sleep. Can't they have a "sleep" option on these machines, some operational mode where the patient gets a reduced stream of drugs during the nighttime hours? Doesn't that just seem to make sense?

One of the keys to recovery is to get up and move around early and often. It wakes the body up and gets the healing juices flowing. Getting up out of bed was a chore, and quite painful at times, and the first few walks around the floor were not pretty. The other 95% of the time, when I wasn't walking and was lying in bed, they had do some deep breathing exercises involving some contraption every hour or so to help ward off pneumonia and fever. Not sure how taking deep breaths fights off a fever, but it worked. It seemed every night my temperature would spike and I'd wake myself up every hour to do these damn exercises.

On the fourth night, Sunday, I think, the drugs and the fever got to me. I had trouble falling asleep that night, so the nurses gave me lorazepam (an anti-anxiety/anti-insomnia med) in additional to the dilaudid to help take the edge off (we had successfully tried this a few nights earlier). I fell asleep but about an hour later I woke up covered in sweat from head to toe with the sheets completely soaked. I had no idea where I was, what was going on, or even WHO I was. Seriously. I don't know if anyone has experienced this, but this is a very scary feeling. I looked around the room, eventually realized I was in a hospital, recognized a call button for what it was and pressed it, but not really knowing why. The nurse came in and asked what was wrong and I said "I don't know. I don't know why I'm here or what's going on." As the nurse filled me in, everything came back to me, but that experience shook me up. The doc later filled me in that hallucinations and disorientation are side effects of dilaudid. Nice.

Being on dilaudid also made it extremely difficult to concentrate. After that waking-up-and-not-knowing-who-you-are experience, I came up with the seemingly brilliant plan to set an alarm on my phone every hour to remind me to press the pain medicine button with the notice "take pain meds - rectal cancer surgery" to remind myself what was going on. But, I was so completely stoned that I couldn't set a calendar appointment on my iphone to save my life. I could barely focus (mentally or physically) on my iphone screen, and when I didn't fall asleep in the middle of typing something and was able to set an appointment, I came nowhere close to getting either the date or the time right. After about six tries, I gave up. I apparently did manage to set a few reminders as over the remainder of my hospital visit my phone would go off at random times with the "take pain meds - rectal cancer surgery" notice.

The next morning they switched me from dilaudid to oxycodone. I think they gave me one last shot of dilaudid followed by a chaser of three pills of oxycodone. This didn't work any better as I had a repeat of the amnesia event. I fell asleep after taking the oxycodone and an hour later, I again woke up covered in sweat, all dazed and confused. That was enough. I told the nurses what was going on and that I wanted to try a different pain drug.

I couldn't get any sleep because my body was fighting off sleep. Every time I was on the bring of sleep, my mind was start hallucinating and my heart rate would jum pup. My body just didn't want to deal with the hallucinations, crazy/vivid dreams or whatever that I would see whenever I shut my eyes. (I can't really describe all the crazy stuff I saw.) The doctor eventually came in and after a bit of discussion, he really didn't seem to know what to do. I told him that I do great with vicadin/hydrocodone and that I'd be happy with that, and he went with it. (Why he didn't suggest vicadin up himself puzzled me. It was a little disconcerting to me that me, the patient, was the one that was coming up with the ideas that were being implemented. In fact, I felt that was the case more than a few times during my stay. Don't you think the doctors and nurses have all the answers? Me too. But, I'm here to tell you that the don't. Nobody does.) The vicadin worked fine, the disorientation and hallucinations stopped, and I've been on the drug since.

That's it for now. It's late. More tomorrow.

It's been .. two weeks ...

2010-06-16T09:03:00.000-07:00

Although it's only been two weeks, it feels like I went into surgery an eon ago. I haven't even been back at home a week and it feels like I've been lying on the couch here for well over a month.

Recovery is slow, but steady. Still taking short walks around the neighborhood, but now at a slightly brisker pace. I'm still a bit off from walking "normal", but at least I'm not shuffling around anymore. Sometimes I chalk up my improvement in walking to healing, but I find there's a close relationship between how much vicadin I have in my system to how well I walk. I walk much better when I'm narc'ed up. So, yeah, the keister is still quite sore. I still can't sit at all and even lying on my back still hurts a bit. But, every day is getting better.

Saw my ostomy nurse, Natalie, on Monday. She's fantastic - very supportive, very enthusiastic and she has tons of experience. She says everything looks good - my stoma looks healthy (I wouldn't know - I still try not to look at it) and my butt wound is healing nicely. She arranged for a ton of ostomy supplies to be sent to me from the various suppliers so I can try various bag systems to figure out what works for me. Since ostomy supplies cost a couple hundred dollars each month (yeah, that surprised me too), everybody wants my business. I've already gotten a call from one of the suppliers' customer support people to check in on me. Insurance covers these supplies at some coverage level, but still, it's a medical expense I have to account for.

There are a wide variety of bag systems. First, there are one-piece and two-piece systems. In two-piece systems there is a "flange" or "wafer" that attaches to your skin and that has a hole that goes around the stoma. The flange attaches to your skin via a pectin wax-type adhesive, and has a plastic ring to which the bag attaches. The second piece is the bag itself. The two-piece system is nice because you can "burp" the bag if there is gas build-up. In a one-piece system, the bag attaches directly to the skin, and you can't burp it. The one-piece systems are nice because they have a slimmer profile and are thus less noticeable under your clothes. For me, right now, this is a big issue, because I'm still a bit hypersensitive having a bag and if I can see an outline of the bag at all when I'm walking around, I feel like there's a large neon blinking sign around my waist that says "I'M WEARING A COLOSTOMY BAG."

Another variation is drainable or closed bags. The closed bags are one-use bags. They're smaller, which is nice, and you chuck them once they're "full". The drainable bags are nice because they can be burped to let out gas, and, they're reuseable. Peeling off an old bag, cleaning the skin and the stoma and attaching a new bag takes time and can be messy (I'm still figuring it out), so I'm using drainable bags at the moment. Maybe when I start figuring out my body's rhythm, single-use bags may make sense at some point.

Yet another variation is whether the bag wall that faces away from the body is transparent or opaque. This may not seem like a big deal, but believe me, it is. With a transparent bag, you see everything, which helps you figure out when you need to drain or swap out the bag, but this takes some getting used to. Whenever you look down to check on the bag, you see all the poop. For the first few days, if there was ANYTHING in there, I had to clean it out. I mean, it's poop. It's gotta go. Nobody wants to haul that around any longer than necessary. However, constantly cleaning out the bag means a lot of more trips to the bathroom, and cleaning out the drainable bags is still an experience I'm not used to, so, I let the bags fill up a bit before going to the bathroom.

So there you go. More information about colostomy bags than I'm sure you ever wanted to hear about in your life.

Other than that, everything else is going great. Friends and co-workers are stopping by to visit, which is great, and there is world cup soccer and Sopranos DVDs to watch on TV. Family is staying with me for a few more weeks, but I'm relatively low maintenance right now. Grocery shopping, dog walking and laundry are pretty much the three things I'm still needing help on, but otherwise, I can take care of everything else.

Some photos from the hospital:

Resting, all hooked up ...

Jen and Wendy visiting ...

Stoic viking walker pose

Chile just scored on Honduras ... gotta get back to the game.

First two days at home

2010-06-12T22:17:00.000-07:00

I've been back at the apartment for two days and I now have the time and motivation for a proper post. It's not like I've been "busy" since I got back (I've mostly been spending time in the now fully operational mancave), I just haven't had the mental focus to actually sit down and write a blog entry. Maybe it's all the world cup soccer games I've been watching. Maybe it's the pain killers. Maybe it's both.

First off, I want to thank Wendy for all of her help guest blogging. She did a great job and I have continually expressed both my and everyone else's thanks to her for keeping everyone informed. Wendy, thanks again.

Healing is proceeding well. Things are still fairly painful but I'm able to take short walks around the neighborhood. I'm sure I'm quite the sight - shuffling around in my pajamas - but it's progress. The entire abdominal region still feels all tight, swollen, bloated and painful so I'm still moving pretty gingerly. I managed to attend a social gathering briefly today, but the sitting in the car on the way there and back, along with sitting a bit at the party itself, made my butt angry, so I kept myself pretty horizontal the remainder of the day.

My plumbing is slowly coming back on line. I have a visit with the urologist on Monday to make sure everything in that department is OK, and, although it took a *week*, the solid food I managed to eat in the hospital is finally starting to work it's way through. This was good news as it means everything is working, but with the bag, it's kinda gross. I mean, it's pretty much right there in your face. I know that eventually I'll be fine with it, but right now ... Gah. I just grimace whenever I look at the damn bag or have to empty it. This is gonna take some getting used to. Nobody wants a shit bag hanging off their stomach and it sucks ass that I've got one. But, it's the hand I've been dealt and I no other choice but to deal with it the best I can and move on. So there.

To sum up my feelings about getting the bag, and why I wound up getting one, I'm including the post I made to the "colon talk" on-line support group on the matter:

Hey gang,

Had my surgery last week. Got back from the hospital yesterday. To recap, I choose the LAR procedure and was pretty excited and happy with my decision. Based on my research, the local recurrence rates between LAR and APR seemed comparable and it seemed like there was a fair chance that I would be happy with the performance of a partial sphincter. And, of course, the opportunity to avoid having a bag was attractive.

However, surgery did not go quite as planned. I'm sitting here at home with a colostomy - I got an APR. Here's what happened. One reason I was comfortable with signing up for an LAR procedure was that my surgeon assured me that if at any point he felt he couldn't get all the cancer out, or that he couldn't perform the LAR procedure due to various other constraints (my body type, etc.), he would switch over to an APR. His utmost concern, as was mine, was to get all of the cancer out. One of his decision points was whether he felt there was sufficient distal margin. After chemo/radiation, he did a rigid proctoscopy to take a look at things, he felt there was enough margin (but wouldn't know for sure until surgery) and said that I was a candidate for an LAR. In my case, once he got in there, he didn't feel there wasn't enough margin, and he went ahead and did the APR. I'm not too surprised by this as all three doctors at the Mayo Clinic came to this conclusion IMMEDIATELY after feeling where my tumor was.

On the bright side, it appears I had a complete pathological response to chemo/radiation. This is very, very good news! NONE of the harvested lymph nodes (0/46) showed signs of cancer (my initial diagnoses showed that the cancer had spread to 3-4 nodes) and there was no signs of cancer in the remnants of the thumor. (On a side note, 46 nodes seems to be a LOT. I asked my surgeon if he went fishing for extra lymph nodes and he said no, that's the number of lymph nodes that happened to be in the excised tissue. He said the combination of me having a strong immune system and the hospital having eager-beaver med techs who search extra hard for lymph nodes was responsible for the result.)

That I had a complete response to chemo/radiation is bittersweet news. It seems cruel that you can only learn that neoadjuvant therapy was completely effective after you have surgery and things have been taken out. But, I also understand that you can't draw the conclusion that there's been a complete response based on a limited number of post-chemo/radiation biopsies that come back clean.

But, yeah, It's a bummer to be sitting here with a colostomy, especially when I had done all that work and research between the two options, and after I had gotten myself all excited about NOT having a bag. I'm still focusing on healing and getting through all the physical pain I'm still in, so I haven't started wrapping my mind around the idea of it yet. I try to look at the bag as little as possible right now, and I haven't even looked at the stoma yet. I'm wondering if my surgeon didn't leave me a bit astray with offering me the option of getting an LAR. He said from the get-go that the tumor was located pretty low, and that the if the tumor shrunk, I'd be eligible for sphincter-saving surgery. However, he also said that he assumes that all scar tissue he comes across during surgery is cancerous (for the most part, surgeons can't tell the difference between cancerous tissue and scar tissue from CRT). So, although he never really said it, I think my surgeon, all along, had the same mind set as the Mayo surgeon (take out all tissue wherever there has been cancer - it's the only way to know for sure.)

So, anyways, here I sit, "cancer free", with a colostomy bag. That sentence captures both the highs and lows of how I'm feeling right now. Being cancer free is wonderful news! But, having a bag - bummer. I know I'm not going to enjoy having to deal with the bag, but I do know that I'm going to enjoy life. As I sat in my wheelchair at the hospital entrance waiting for my ride, I saw at least several people who would probably be willing to trade their condition for merely having a colostomy bag. I feel fortunate that cancer (or something else) didn't take much, much more from me.

Here's to having had a successful surgery and looking forward to getting back to doing all the things that I love to do!!!

Doug

---

Now that I'm settled in back home, I've been getting requests from my local friends on what they can do to help me out. Really, right now, all I'm looking for is to have people visit. My Mom is helping out with doing the few chores that I can't do myself at the moment (grocery shopping, cleaning, laundry, walking the dog, lifting or moving anything more than a few pounds), but it's not taking much of her time. So, really, I'm not looking for more than visits from all you good folks. If you want to bring over something to eat, awesome. Trust me, it won't go to waste. My appetite has come back quite nicely.

Discharged

2010-06-10T19:26:00.000-07:00

Doug here. I'm back home. I still have a LOT of healing to do (understatement of the year), but nothing that can't be done in the comfort of my own apartment. I'll write more about my hospital stay over the next few weeks, but for now, just a quick heads-up to let everyone know I'm back! Another hurdle cleared! Awright, the move and the drugs have me wiped a bit, so that's all for now.

Looks like the Pac-10 was busy while I was away? The Pac-16???

Open for business

2010-06-09T09:26:00.000-07:00

Let me quote Doug here: "I'm feeling the best that I've felt since surgery." Yay! He thinks he'll get discharged tomorrow or Friday. Feel free to stop by if you like, just call or text Doug beforehand. Texting is preferred if that works for you. He didn't say this specifically, but I imagine calls/texts are welcome from the far-away friends and family as well. Doug can check his email on his iPhone too.

Quick update

2010-06-08T15:13:00.001-07:00

I hope the no visitor thing didn't worry everyone too much! I talked to Doug & his mom around noon. He sounds good. He's on hydrocodone for the pain now. I think it was a little trial & error to find a pain med that works without too many side effects. No word (as far as I know) on a release date. In my non-medical opinion, I think it will be pretty soon. My days are numbered for blogging. I saw Doug exercising his typing fingers the other day! That's all for now.

Buh-bye cancer!

2010-06-07T21:37:00.001-07:00

Happy to report good news! Pat just called with the official lab results from the tissue removed during surgery. They said that they got all the cancer! I believe that means that they had clear (non-cancerous) margins all around the cancerous tumor. If someone has more medical knowledge than me (mine comes from ER & Grey's Anatomy), feel free to chime in here!

This is an important step in Doug's goal to be NED (No Evidence of Disease) by the end of the year! Kudos to the surgical staff!

Visits & Calls Suspended

2010-06-07T19:46:00.000-07:00

Doug & his mom really appreciate all the visits & support they have been receiving while Doug is recovering from surgery. I'm sure the visits take some of his energy, especially since he is such the entertainer. Therefore (for right now), Doug is going to focus on healing. If you send emails/texts or call, don't expect a response. I believe Doug's phone is turned off. Also, please save up the visits for later when he's feeling more up to it. Pat (his mom) is spending tonight at the hospital. I'll try to update the blog as often as I can. Feel free to post comments/questions on here or email me & I'll do my best to address them. Send thoughts of pain relief, rest, and a good night's sleep to Doug.

Grabber

2010-06-07T13:25:00.000-07:00

When I stopped by today, OT (occupational therapy) was there. She was demonstrating tools & strategies for doing everyday tasks as Doug recovers home. The things that we all take for granted: dressing ourselves, getting in & out of bed,etc. One tool was the "grabber" for picking things up off the floor or anywhere that's out of reach. You've seen the infomercial. The one that got high praise ["cool!"] was the "sock aid" (http://www.amazon.com/Ableware-Deluxe-Sock-Aid/dp/B0006J530W/ref=pd_sim_hpc_2). Ever try to put socks on without sitting down? Apparently laying down and standing are the two options for now (doctor's orders). Doug, his mom, and his occupational therapist didn't know how long the no-sit order would be. There was some discussion of the set-up at his apartment and what modifications might be required. There might be a recliner in his future... that would complete his man-cave!

He's off the IV and on oral pain meds (oxycodone).

So... the obvious question is when does he get tagged & released into the wild?? Doug thinks it might be Wednesday, but there hasn't been any official word. Visitors are welcome at the hospital, just give him a ring or call if you know an approximate time.

Sunshine and Grub

2010-06-05T14:42:00.000-07:00

Portland is sunny today and so is Doug! What a difference a couple days makes! He is able to speak in a normal volume (previously he was speaking more gingerly to avoid disturbing his sore abdomen). He walked up & down the hallway at least 3 times yesterday, and did some loops around 7th floor today.

He's eating too- anything he wants apparently! He graduated from ice chips to meatloaf & chocolate pudding. I pity the fool who ever puts an NPO (no food/drink) order on me. I would not have handled it as well as Doug did.

Speaking of food, look at the soup that was served on Doug's surgery day (un-doctored pic below). There also was a "Summer Fest" salad that those of you familiar with the Milwaukee music festival will appreciate. I took it all as good signs from hooooooome!

What else? Doug's drug of choice [connected to his push button] has changed from morphine to dilaudid. He seems relatively perky & energetic (except after pushing the button), so I'd say feel free to call &/or visit. The doctors have said the expected hospital stay will be 5 - 7 days, so as long as Tuesday or so. I forgot to ask today how they will determine his release into the wild.

This is 3rd hand so I don't have more details: Doug's surgeon stopped by & said he's doing great. Doug said the staff came to the conclusion that his bootie is healing well.

Signing off... I'll post again after I visit him tomorrow.

Visitors & Walk-About

2010-06-04T10:42:00.000-07:00

Hi! Sorry I didn't get a chance to update yesterday- busy!

I'm happy to report good news. Doug was up & about with the physical therapist yesterday. His first time up after surgery and he took a loooong walk down the hallway. I'm horrible at estimating distance, but let's just say he looked really small when he was furthest away. That should give you an idea!

Also, the door is OPEN TO VISITORS. The visitor hours are technically 11AM - 8PM, but anytime is fine as long as we don't turn the base up too high on the dance music. :) [i.e., don't be too loud.] He didn't specify how/if he wanted to be notified of visitors. He has his iPhone close by, so I'd say feel free to text him if you want, or just show up. I'll update the blog again if he has a preference.

He is at Providence Hospital on NE Glisan (4805 NE Glisan St.Portland, OR 97213), in the Cancer Center. The (free) visitor parking is off of NE Glisan, just east of 47th Ave (there's a light). You can enter through the side entrance (closest to the garage). There's a walkway from the garage to the hospital on level C, I think. You're going to want to turn right once you get inside & head towards the Cancer Center Lobby. The "Tower Elevators" are the ones you want (there are MANY different elevators @ Providence). Press 7. Take 3 lefts as you get out of the elevator (basically make a U-turn). His room 723, is all the way down on the right.

We discovered that he has a DVD player in his room. This request is coming from me, not Doug (Hopefully he won't kick my butt for mentioning this in the blog.): If you have any DVDs you want to lend to the cause, I think he would enjoy that. Please just label it with your name! At this point, I think TV shows might be a better length than movies. He'll have some time to kill in his lazy boy at home too, so feel free to contribute what you think he might like.

A general note: I think it is still hurting him when he laughs. He is cracking jokes as usual, but is suppressing his laughter. (At least this is my excuse that he's not laughing at my jokes. It couldn't be that they are not funny!) So Doug should be the only funny guy in the room! :)

I think he's doing super awesome. All the well-wishes are helping! Keep 'em coming!!
:) Wendy

About visitors

2010-06-03T00:09:00.000-07:00

When we left today, Doug said he thought it would be a couple days before he'd be up for visitors to his sweet pad away from home. His nurse Garrett and his CNA Casey were taking good care of him. Casey did confirm that there is a Mt. Hood view when it's clear. I think that's especially appropo considering Doug's mountain climbing feats.

In addition to the care he's getting from Garrett & Casey tonight, kudos to Dr. Whiteford (surgeon), Dr. Ricketts (anesthesiologist), and the whole team at Providence.

OK, enough posts for 1 day. I wonder if he's going to approve of these posts once he is taking less morphine.

The jokes resume

2010-06-02T20:59:00.000-07:00

Doug has already cracked a few jokes! His voice is gravelly from being intubated. He said, "I'm gonna cut a few Barry White tracks." Pat & I have already signed his bag. Bring your own sharpie if you come to visit.

He's tired & sleepy & pumped full of morphine. I'll update when I see him tomorrow.

Room with a view

2010-06-02T18:35:00.000-07:00

He's outta surgery! We just talked to the surgeon. He said he got rid of all that crappy cancer. He'll be in recovery for about an hour, then they'll bring him to his new room. His room has a beautiful view from the 7th floor, maybe even a view of Mt. Hood on a clear day?

I'll get back to you when we have the guest of honor with us.

Tumor OUT!

2010-06-02T17:12:00.000-07:00

Tumor is out! Buh-bye! Good riddance! One hour left of surgery, then I think it will be another an hour or so until we can see him. I'll post again when he's in recovery, then after we see him.

Update

2010-06-02T14:03:00.000-07:00

Everything is going great in the operating room. Unfortunately, we got news that they need to do the APR rather than the LAR. This means a permanent colostomy bag. The surgeon want to err on the safe side to make sure he gets all the cancer. Adios cancer! We all want that cancer to be gone gone gone!!! I'll do my best to speak for Doug: FAAAAAAACK! (sorry for swearing!) I'll speak for myself here: Doug has a great surgeon, and this is what he felt was the best. I know that he will deal with this with the humor and perseverance with which he has handled everything. Hopefully, he'll be OK with me sharing this on here. It will be about 3 more hours or so before he's in recovery.

And they're off!

2010-06-02T11:19:00.000-07:00

They just wheeled Doug off to surgery. Doug was cracking everyone up as usual! Thanks for all the well-wishes!! We'll be posting again by 6, if not before.
:) Wendy

Tomorrow

2010-06-01T22:26:00.000-07:00

One last pre-surgery blog entry.

I've been thinking about tomorrow since January 21, the day I first heard the "C" word, and surgeon told me that I'll be needing surgery -- how anxious/nervous I'd be, what'd be going through my mind, and how little sleep I figured I'd be getting. Well, I feel good. I'm a lot less excited than I thought I'd be. I think that's the result of having had so much time to mull this over, and having had so much time to do the research, search for providers, get second opinions and put together a team and a plan that I'm comfortable with.

Do I have doubts that there's a better surgeon, a better facility, a better variation on the procedure that I'm having done out there? Sure. Yeah, I do. But I'm not worried about it. I'm very satisfied with the path I've chosen. I was in the hospital today and pointed to a newspaper article to my Mom announcing that my surgeon was just appointed head of surgery at Providence. I'm sure they don't hand that job out to hacks.

But, even though I'm feeling positive and confident about things, like all of you, I'm anxious, excited and curious to see how tomorrow goes. I'll write when I can (which may be sooner than you think ... ;) Until then, Wendy and my Mom will keep everyone updated.

Now to go and make a futile attempt at getting some sleep ...

Trial run

2010-06-01T12:58:00.000-07:00

Hellooooo, Doug's family & friends!

Let's get the introductions out of the way: For those of you who don't know me, my name is Wendy. I'm a friend of Doug's from the Austin days who also happens to live in Portland now. I will be posting tomorrow during & after Doug's surgery (along with Doug's mom, Pat). I anticipate I'll post multiple short updates as soon as we know anything. I know you will be waiting anxiously for the good news, so I'll be as timely as possible.

As soon as he wants the blog reins backs, I will hand them back over. You're in for some spectacularly entertaining posts if he writes while under the influence of pain killers!

Feel free to contact me: wnuzzo@hotmail.com. We'll have wifi in the hospital.

Doug may be deleting this trial post, so I may repeat some of this in my post tomorrow.

Well, here goes... I'm going to post this!

:) Wendy

S minus 37 hours

2010-05-31T22:02:00.000-07:00

Yup, we're down to hours now. Not much new to report. Family has arrived (Mom flew in yesterday) and can't think of anything major that still needs to be taken care of.

Tomorrow I'll be going into work, but it's going to pretty much a perfunctory appearance. Not only do I expect a parade of well-wishers to keep me from getting anything done (which will be welcomed - I won't complain about that), but my mind will be elsewhere. I have to run to the hospital to take care of some last minute tasks (*another* x-ray, pre-op bloodwork) and I have to be back in the apartment for bowel prep by 5P, so it'll be a short day in the office anyways.

Ah, bowel prep. Nothing quite says fun like "bowel prep". What does prepping one's bowel involve? Well, I'll tell you. Bowel prep consists of a few Ducolax pills followed by a Gatorade-Miralax chaser. The prep instructions say that after the Miralax mix, "You can expect to have multiple bowel movements soon after." That's an understatement. The instructions also do NOT say when you can expect them to STOP. Having gone through this once before, I can say that it's not anytime soon. Seems like to leave that important tidbit out is a bit cruel to the unitiated.

Oh, hey, here's a YouTube clip of comedian Bill Connolly on colonoscopies. http://www.youtube.com/watch?v=BBMsPNI6EZE. Killer stuff.

---

Got a package from one of my college buds in the mail a few days ago. It was a viking helmet that we gave to him for his wedding last fall. It's an inside joke with a bunch of the guys from college, but suffice it to say, it was great getting get it in the mail. Good to know that they're thinking of me, and that they've got my back. I called up my buddy who sent it to me and we agreed that it's now a traveling helmet that gets sent to one of the guys who's going through a major life event (wedding, cancer surgery, etc.)

---

One benefit to having cancer is that you have something in your back pocket that you can pull out whenever you need to a little something extra to tip the scales in your favor. It's the Cancer Card. The Cancer Card is great fun. When I was up in Seattle visiting another one of the guys, we had picked out two rental movies, were deciding which one to play, and I said "Well, the guy with cancer would like to see (whatever movie it was) first." That just killed my friend and his family. Them: "OHHHHHH! You didn't just do that." Me: "Yeah. I did." Them: "The cancer card? Really? You played the cancer card over a rental movie." Me: "Throw it in." Of course, the rest of the night was us going back and forth. Me: "The guy with cancer would like the volume turned up a little bit louder". Them: "Would the guy with cancer like another beer?" Loved it.

Of course, the Cancer Card can be used against you, too. Back in Madison, playing Euchre with the guys, I played the Card to give one of the other guys grief over trying to steal the deal ("You tried to steal the deal from a guy who has cancer? How do you sleep at night? Have you no shame?" (He gave me the deal)), and it came back to bite me a bit later("Of course, you realize that we let you win that game -- You have cancer.") I ate it up. That's why I love these guys so much. We know each other so well, that they knew that would just kill me. These guys crack me up endlessly. Our collective sense of humor is so irreverent, nothing is off limits, even cancer.

One of the best things about the Cancer Card is that it has an expiration date. At the end of post-surgery chemo, I plan to be NED. That means I can't use the Cancer Card, because I WON'T HAVE CANCER!!! Looking forward to that day. Looking forward to being just another guy in the crowd.

---

Tomorrow is nothing but clear liquids. No solids. Nothing. Then at midnight I'm cut off from everything. I'm gonna be starvin' marvin. Tonight's "last meal" - kick-ass lasagna at a great Italian with some good friends.