Tuesday, April 27, 2010

S minus 5 weeks

Only five weeks to go. I like 35 days left better. That seems longer. But still, five weeks is still a good chunk of time. It's almost a tenth of a year, right?

Nevertheless, I think I'm growing anxious about surgery, at least subconsciously. During the day I go about my business and don't think of what's going in my ass too much, feel pretty good about things and how I figure everything is going to work out the best in the end (intended), but the past 3-4 nights I've had a tough time sleeping. I wake up in the middle of night feeling worked up, anxious and stressed. I've had to use relaxation tapes to get me to fall back asleep. I dunno, maybe things are starting to pile up mentally. I ran through the first leg of the gauntlet just fine, but the degree of difficulty of the next two stages are much harder. It's great knowing that I'm going to come through this just fine, but knowing what I'm going to have to endure and how freaking LONG it's all going to take to get there ... well, it just blows. The thought of having that rough-around-the-edges you have ALL the time when you're going through chemo - I am NOT looking forward to four more months of that crap. Six weeks was already enough. I already want to hit the fast forward button. But you know what? If that what it takes, I'll do it.

Sunday, April 25, 2010

S minus 37 days

Went on another bike ride today. A 32 mile loop around in wine country with a good friend. It was great - good weather and beautiful scenery on the way out, and we stopped at one of the wineries for a quick tasting. Just a lot of fun. The road back sucked a bit - way too much high speed traffic, was into the wind, and my friend got a flat. We couldn't fix it, so I had to high tail the last 12 miles to my car by myself while she waited.

I was definitely well-worn at the end of the ride, but I was pretty proud with myself for riding 56 miles in two days three weeks after chemo.

I viewed this weekend as giving a big middle finger to my cancer. I'll be damned if this thing is going to slow me down. While I was riding, I kept thinking that my concerns about having a bag are pretty petty. As long as I can continue to have days like today, and there's no reason to think that shouldn't, everything is going to be just fine.

Saturday, April 24, 2010

S minus 38 days

Haven't blogged in depth in a bit, so lots to blog about.

Health. My health continue to improve each day. I feel great now. Earlier in the week I still had some minor soreness with the whole chest/neck thing, but that seems to have gone entirely away now. It was still there when I saw my chemo doc for my post-treatment follow-up and he said that maybe we have to take the port out for post-surgery chemo. Or, maybe we'll have to go to another drug cocktail. That'd be too bad. I want to get whatever gives me the best chance of getting cured (despite the fact that there are more side effects and it's a harder treatment to tolerate). I'm hoping that I deal with the post-treatment chemo OK. Anyways ... I can eat whatever I want now. Went to a great Cuban place last night, and had a few nice and spicy lunches last week. Back to eating salads again. It's all good. Nothing shoots through me anymore. Back to exercising too. It really took a two plus weeks to shake the fatigue. Got out and biking 24 miles today. It felt good, really good.

Surgery. Mentally, it's nice to have a date set - something that I can circle on the calendar. Now I can start making plans to marshal the troops. It's like a mini airlift of family members from back home to help with my recovery. There's lot of people already here in Portland who are ready to help as well.

As far as surgical options go, I see my surgeon on May 3rd. He's going to take a peek at the tumor to see how it has responded to surgery. I think it's gone entirely. No reason for that. Just a gut feel. They need to wait about a month after treatment to allow the treatment to finish working, and to allow for things to heal up before people starting poking in my back end again. There's no way I would have allowed that a few weeks ago without being put completely under. I'm thinking my default position is that they should give me the permanent bag. The doctor is going to have to convince me that sphincter-saving surgery is a good thing. Yes, the quality of life would reduced with a bag, but if cancer comes back and takes me out two years down the line, my quality of life is a big fat zero. No life. No quality.

So, since it looks like I'm going to get bagged shortly (no paper or plastic choice - they're all plastic), it looks like next month is Doug's Asshole Farewell Tour. If you knew you were going to have your asshole taken away from you in a week, what would YOU do with it?? It's not nearly as deep as question as if you knew you were going to lose your sense of hearing or your eye sight (what would want to hear or see one last time?), so I probably wouldn't do anything unusual except maybe have a little more Mexican food, cheap beer and sauerkraut than usual.

I will be doing some traveling before surgery, though. Heading back to Wisconsin the first weekend in May to see everyone and soak up as much good will as I can, and then it's up to Seattle for more of the same. I'll probably take one of the remaining weekends to get away on my own to log some quiet Doug time with Tahoe and to contemplate the road ahead.

Eric. Eric is one of my brothers by birth. When I was diagnosed with cancer, the doctor told me to tell my siblings over 30 to get checked due to me being having rectal cancer at such a young age. Eric is 35 or 36, I think. Well, Eric had his colonoscopy about a week ago and they found a big polyp, which they removed. I was very, very happy to hear that. I mean, it sucks to find out they found a polyp, but, from what little I've learned recently, most polyps, if left alone for several years, usually turn into cancer. Don't get me wrong, it sucks that all my birth brothers are having to get colonoscopies early, but knowing that a family member is directly benefiting from me going through this bullshit makes me feel good. This makes my decision to attempt to find my birth family 9 years ago, which turned out to be one of the best decisions I've ever made, even better. Eric never would have known about me or my cancer, and that polyp could have sat there for years before being discovered. My other two birth brothers, Adam and Adrian have their colonoscopies soon. Here's hoping for clean, smooth colon walls all around for both of them.

Support Group. I went to a support group for colon, rectal and anal cancer patients held by the hospital. It's held once a month and I thought I'd check it out. Emotionally, I feel fine and through this whole process I really haven't been looking for other cancer patients/survivors to share my story with, but I thought I'd go see what this is all about. I figured it'd be nice to at least have a feel for what this group is about in case I needed some support down the road.

It was so-so. There were a handful of cancer patients there and we went around and talked about where we were in treatment. It was kind of like those AA scenes you see in the movies, "Hi, I'm Doug. I have cancer. In my ass." This part was nice because everyone had questions or comments about for each person, and it was good to hear other people's stories, even though some people's experiences were quite different from mine.

The 2nd half of the meeting was too touchy-feeling for me. A basket of quotes about hope were passed around and we were asked grab a quote, read it aloud, and then tell the group what hope meant or looked like to us as a result of having to face cancer. Whatever. My quote was from Helen Keller and was something like "If you look into the sun, you can't see the shadow." (Didn't *everything* look like shadows to her?) So, I read the quote and don't really recall what I said about hope.

But I will say that going through this struggle is a transformative one. Everyone's journey is different, and I think how much getting cancer changes you depends on how bad the cancer is. For me, by the end of the year, I'll be fine. I'll have no evidence of disease, or NED (that's the big milestone after treatmetn - being "NED". There' s no test they can run to tell you definitively whether or not every cancer cell in your body has been eradicating, so they rely on the diagnostics that they can run, and if everything is clear, then there is "No Evidence of Disease". NED.) And then it'll just be a waiting game to see if it comes back. So, I don't really view this cancer is really putting me in serious jeopardy of losing my life. My biggest fear is it coming back somewhere where they can't do anything about it, or where treatment will leave a much larger footprint than what I'm facing now.

Yes, there will be lifestyle changes I make to improve my physical and mental health, but I don't know how much I will change my life. I may or may not look for a different job that gives me the time to do more of what I enjoy doing, or one that I find really fulfilling. I may or may not decide to move back to Wisconsin to be closer to family. Who knows. But, getting CA has really taught me, or really, re-taught me, what's important. Doing what makes you happy and spending quality time with those you care about. If I do make any major changes other than health, that's what I'll be acting on.

Friday, April 23, 2010

S minus 39 days

Surgeon's office called. Surgery is set for June 2nd. They actually asked if that date worked for me. That was kind, but really ... it wasn't like I was going to check my calendar to see if I had something more important going on. I mean, is there really anything that would take priority over getting a cancerous tumor removed???

Hell. No.

Let's get this thing done!

I think we punched cancer in the mouth pretty hard with chemo and radiation. Now it's time to drive a wooden stake through its heart .... Cancer be gone!!!

Thursday, April 15, 2010

A pretty good day ...

I've been unplugged from the chemo for 10 days now, and I feel good. Very good. Pretty much ALL of the pain is gone from all of the side effects has been gone for the past few days. The only thing I'm struggling with is a little bit of fatigue. That, and I pee and poop more frequently than I used too before radiation. None of it hurts anymore, which I'm grateful for every day, but when I need to go, I gotta go. Hopefully that gets a little bit better over the next few weeks, but right now, it's only a minor inconvenience. I'm happy to have my health back.

Oh, had my follow up visit with the lung doc today. They took an xray, I told them that I was pretty much chest-pain free (for the most part - just a little pain left), and they were happy with that. Me too. He couldn't really explain why chemo would cause this kind of pain (just goes to show you how unique I am), but hey, it's done with. He did have one theory thought - the chest catheter which enters the body in by my upper left clavicle winds up in the center right of my chest - right where I was feeling the localized chest pain. So, maybe there's some agitation of the heart or lungs right where the toxins enter the body. But that's just a theory. This is another reason why I'm happy that I only have two days out of every fourteen to which I'm hooked up to the pump after surgery. If it really is the catheter delivering chemo that's causing the pain, it shouldn't be something I have to deal with. Which would be nice.

Heading to the Oregon coast tomorrow for a legal education "class" at the Salishan Spa and Resort. Lawyers work hard, but when it comes to getting their CLE (continuing legal education) credits, they know how to do it right sometimes. It's two days of intellectual property seminars, with plenty of time to enjoy the facilities. Me, I'll be passing on the golf, tennis and spa treatments and just plan to catch up on sleep, and chill. Just looking for a very low stress, relaxed weekend. I think I've deserved it.

Wednesday, April 14, 2010

I ate an apple

Had an apple yesterday. (Yes, I'm going to blog about eating an apple.) It was the first apple I had in a few months (too much fiber for me to handle when I was on chemo). It was a red delicious apple. It was so good. Probably one of the best apples I've ever had in my life.


So, one thing about cancer is that when you tell your cancer story to someone, they tell you *their* cancer story, if they have one. And it's amazing - I swear *everyone* has one. If not themselves, then it's a mother, father, brother, sister or someone else close. It is really super CRAZY how common it is, how many people's lives are touched. Since I've gotten this, I've learned that it's something like 1 in 2 to 1 in 3 people get cancer at some point in their lifetime. In fact, just TODAY I learned that TWO friends of friends found out that they have cancer - one, the same thing I have - stage III rectal, and the other, the most aggressive kind of breast cancer you can get. I wish them the best.


So, one of the people I've "met" on line at the "colon club" is this 32 year old woman in Appleton, WI who is just a few months ahead of me in the whole process. She had her surgery in February (APR) and got a permanent colostomy. Her blog is great - well written, good sense of humor - and I'm following it closely because it feels like it's a window in my future. I particularly like how she describes this time before surgery - it's like a moving sidewalk that you just can't get off of, the sidewalk moves every so slowly, but deliberately toward surgery. Surgery is definitely looming large on the horizon for me.



Monday, April 12, 2010

Clean living ...

Today was the first day since starting chemo that I didn't take any prescription or over-the-counter drugs - no pain killers, steroids, anti-diarrhea or heartburn meds, no Tucks, Preparation H or any other suaves, creams or ointments to sooth the behind, nothing. Very happy about that.

Thursday, April 8, 2010

Day 47

Finally - I'm done with the pre-surgery (or, neoadjudvant, as they say in the lingo) treatment. Monday, day 43, was my last day. Everyone asked me if I was going to go out and celebrate, but I'm hardly in the condition to really celebrate. I'll go out and celebrate once I've recovered from treatment. I've been unplugged for three days now and I'm slowly getting better. All the side effects are still there - the chest pain, the rear-end soreness, the "sunburned" pelvic region - things are just going to take some time to heal. Some side effects have peaked, or shown up, since treatment ended. Only now am I really, really feeling fatigued on a daily basis, right around early afternoon. The radiation burns only really hit this week too. Things can be quite painful if everything isn't all bandaged up properly (think pigs in a blanket).

Weekend visit by Jerry was fun. Things were low key, which matched my energy level. We mostly watched hoops and ate our way through a good chunk of Portland. Jerry took a few pictures of the port for me.

Close-up of the chest port -with gratuitous nippage.

The pump.

Swapping the pump out temporary with a 40 of Miller for the game ...


So, with having my apartment back to myself and being done with chemo, I'm looking forward to one to two months of normal living while my body heals up for surgery. We don't have a date set, but it'll be sometime between 6-10 weeks out, which will come up on me much sooner than I can imagine. Lots to do between now and then - my focus is on getting myself mentally and physically prepared for the surgery. Physically, recovery from surgery will probably take 4-6 weeks and will likely involve a lot of time sitting and laying down - my core is going to be ravaged by surgery so it'll be awhile before I can sit up, walk, etc. and be well enough to return to work and sit in an office all day long. So, I'm hoping to start doing yoga and other core strengthening exercises, in addition to a bunch of cardio.

Emotionally, I'm going to have to get myself prepared for the outcome of surgery, whatever that may be. It all depends on how this treatment went. If it went well, and the tumor has shrunk (or is completely gone), then I have to decide between two surgical options:

Abdominalperineal resection (APR). In an APR, they take out everything - the sphincter muscles, the rectum, the last foot of the colon, and all the lymph nodes that connect to the removed section of the colon, and I get bagged. (See http://en.wikipedia.org/wiki/Abdominoperineal_resection for more info).

They do this to make sure that they get as much of the cancer cells out as possible. This is what the Mayo docs recommended regardless of how my tumor responds, even if it's entirely gone. As one of the Mayo docs put it, there's a trillion cells in one square inch of tumor. You don't want to take a gamble that just because all the diagnostic tests after treatment indicate the tumor is gone, when in actuality there's a few left. Best to be sure. And he's right. If the cancer comes back locally, it can be bad. It could attack the prostate, bladder or spine, which can lead to them pulling out a few more organs, giving me a *second* bag (I couldn't fathom ...), or worse (they hinted at a few horror stories - guys winding up in a wheelchair, etc., etc.). The survival rate for recurrent cancer is lower because they can no longer use radiation as a tool. My lower abdomen organs have gotten all the radiation they can take - any more, and they start really getting damaged.

APR pros - best option for reducing the risk of recurring cancer, easier surgery than the other option, and, not having an a-hole, I wouldn't be terribly popular in prison; cons - you have to deal with a bag and other side effects (virility, etc.), and basically, a lower quality of life (QoL) (based on surveys given to APR and LAR recipients).

Lower Anterior Resection (LAR) - Pretty much the same as APR, but the sphincter is preserved. That's why this procedure is called "sphincter saving surgery". An LAR is similar to an APR - the rectum, colon and lymph nodes are removed, but instead of bringing the end of the colon out through the skin to create an ostomy, which is what the bag hooks up to, the colon is attached to the sphincter muscles. The problem with low rectal tumors, which is what I have, is that there may not be enough cancer-free tissue at the bottom of the rectum to pull this off. If there isn't, and a sphincter-saving surgery is attempted anyways, you can wind up with a "leaky bottom" - you have *some* control, but not a whole lot. They make a pouch out of the new colon end to act as a waste resevoir, and it takes time to "train" the colon to act as a new rectum. When things don't quite work out, people feel tied to the bathroom, are afraid to go out and do things socially and recreationally for fear of having an accident, and some wind up going in for a second surgery to get the bag and be done with it. Even when things do work out, it can be over a year to get down to 6-8 bathroom visits/day. Not sure if I want that.

My surgeon here in Portland is good at sphincter saving surgery, and if the tumor shrinks enough that there's enough rectal tissue left to work with, he's going to provide me with this option. (Obviously, if the tumor did not respond to surgery then I have no option - I get an APR.) But, to pull this off, the surgeon will necessarily leave some tissue behind where there was once a tumor. Now you see my dilemma - the Mayo guys say do NOT do that. That's asking for trouble. My Portland surgeon says he was trained otherwise and cited some studies where the local recurrence rate was still low and that almost all of the participants were very happy and that most had "pretty good to normal" continence (poop control).

So, LAR pros - no bag; cons - possible increased risk of returning cancer, potential for leaky bottom, trickier surgery.

I'll be seeing my surgeon in a few weeks to see how the tumor has responded. If I have a choice to make - APR or LAR, I'm going to be doing a lot of research to figure out what the best choice is. Off the cuff, the decision seems easy - if getting the APR increases your survival odds, then get it, even if it means dealing with a bag. But, I need more data - I want to know what the increase in the chance of me getting locally recurrent cancer is if I choose LAR. Unfortunately, there's no study out there that'll give me that data. I think it's just going to come down to me making a decision I'm comfortable with. I've already given my insurance analogy to this whole thing. If the cost to avoid having to pay for the big catastrophic event (recurring cancer) is the premium of having to deal with a bag every day, that may be insurance worth taking. But if I choose this option and the cancer never comes back (which would be absolutely fantastic), I'll always wonder if it still would not have come back had I not had the APR procedure ...

In the end, and I've said this before, I'll likely pick getting the APR if it comes to that. I'm risk averse and everything I've read about dealing with a bag is that, yes, it's a hassle, and yes you'll have embarassing accidents now and the, but it's manageable and after a few months people don't even think twice about it, once you get past all of the emotional and psychological issues.

The APR v. LAR decision might not be the biggest thing I have to worry out. Like I said, the local recurrence rate is about 10-15%. If getting an LAR only increases this percentage by a little bit, it still is a bit less than the distal recurrence rate (the rate that the cancer pops up somewhere else in my body - lungs, liver, etc.). The studies put that rate at 30-35%, which is a very non-negligible number, and is why I'm reading up on all the things I can do after treatment to keep cancer at bay. Studies also put the overall five-year survival rate (is the person alive or dead five years out) at roughly 70% (again, a very *real* mortality rate).


Regardless, the whole surgery thing is starting to weigh on me because this will be the first time in my life where having gone through an illness causes a dramatic change to my physical appearance. Colds, infections, broken bones, and various outpatient procedures - with the right treatment and the passage of time, I've always come out as good as new. Maybe a scar here and there. But with this, that's not the case at all. Having to deal with a bag will be a difficult adjustment for me, as it is for everyone who faces this. I know that eventually at some point down the line I'll get used to it, but ... it just sucks to think that I'll have this "thing" that makes me different from most other people. And it's something that irreversible. It's something I'll have to deal with for the rest of my life (barring a major breakthrough in artificial assholes or something).

That's all for now.