Sunday, June 27, 2010

Plateau

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.








Wednesday, June 23, 2010

Some progress today ...

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.

Monday, June 21, 2010

Wall to wall

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.

Saturday, June 19, 2010

Cabin fever

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.

Thursday, June 17, 2010

Pants on the ground, Pants on the ground

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.

Wednesday, June 16, 2010

It's been .. two weeks ...

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.

Saturday, June 12, 2010

First two days at home

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.

Thursday, June 10, 2010

Discharged

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???

Wednesday, June 9, 2010

Open for business

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.

Tuesday, June 8, 2010

Quick update

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.

Monday, June 7, 2010

Buh-bye cancer!

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

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

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.

Saturday, June 5, 2010

Sunshine and Grub

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.

Friday, June 4, 2010

Visitors & Walk-About

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

Thursday, June 3, 2010

About visitors

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.

Wednesday, June 2, 2010

The jokes resume

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

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!

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

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!

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

Tuesday, June 1, 2010

Tomorrow

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

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