Wednesday, March 31, 2010

Day 38

Not much to report - things have been going quite well and I can see the finish line for my chemoradiation treatment.

The steroid taper worked excellent. I was able to travel to Reno last Friday for a business trip and got to enjoy an evening of betting on NCAA hoops at one of the casinos. Pretty much lost my ass, but still had fun. Today was the last day of the taper and the chest/neck pain has been largely non-existent the past week. I mean, they crept back a bit, but nothing like it was before. I see my pulmonologist tomorrow and should have only a little bit to complain about. He may not be able to figure out what the root cause is, but at least we know works if it should come back. My chemo doc thinks that, whatever it is, it'll go away for good right after chemo ends. Oh, and the pain in the backside has greatly diminished. No pain at all between bathroom visits, which is very, very nice. I haven't taken any pain meds since Friday. (I was on Vicadin pretty much the entire week before.)

My last day of chemoradiation is Monday. I'm really looking forward to it - no more being attached to the damn pump, no more drugs being injected into my body, no more not feeling less than 100%. I'm looking forward to getting my health and my body back, even if it is only temporary - surgery awaits. I starting to think about surgery, but am trying to keep it in the back of my mind. I want to focus on finishing up treatment, healing up and enjoying being healthy for a few weeks before my surgeon excises his pound of flesh.

I have family arriving tomorrow (Jerry, birth-father) and am looking forward to the visit. Looking forward to a good weekend.

Wednesday, March 24, 2010

Day 31

Today was one of those days that you just realize things aren't going your way, and the only thing you can do is to recognize that fact, accept it, label the day as a bad day, and hope that tomorrow is better.

The reason why today started out so sucky is that the chest/neck pain when I woke up was as bad as it's been - still hurt on a deep inhale, and that the pain was more intense and occurred a bit earlier in the inhale. Basically, things were getting worse. I then went to the hosptial to get my radiation treatment and spoke to the doc about the pain. He took another look at the CT chest scans from last week, and said that everything still looks good. He suggested maybe a neck MRI was in order to rule out anything there, and I hemmed and hawed a bit. Yeah, MRIs and CT scans are great diagnostic tools, but I'd rather not have one done unless it was needed. So, I went to work.

And got nothing done. As soon as I got there, my throat/esophagus felt a little constricted due to the pain, which made my concerned. I've said this before - when you've been diagnosed with cancer, any little pain, sensation or feeling gets your mind racing. And, it doesn't help when you go to ESPN to read the latest sports news and one of the articles on the home page is about George Karl suffering setbacks due to chemo/radiation treatment for his neck cancer (he had blood clots). http://sports.espn.go.com/nba/news/story?id=5023269.

So, after staring at Microsoft Outlook for about an hour, and all this going in my head, I went to the ER again. I stopped by the radiation oncologist's office to see what he thought, if he was available, and he was all for me going to the ER, which was good. So, I checked myself in. I told the attending doc my story and there wasn't much he thought he could do to add to the story. They did a chest X-Ray (negative), some additional bloodwork and another EKG (again, all good). He was convinced that there was nothing that originating in the neck and that upper respiratory/lung problems/pain can extend up through the neck. So that was good to hear. I told him that during my last CT, the steroids they gave me prior to injecting with the the iodine contrast due to my shellfish allergies made the chest/neck pain go away. Cutting to the chase, that's what they wound up doing - giving me a course of steroids (prednisone) that tapers down over the week (3 pills days 1 and 2; 2 pills days 3 and 4; etc. etc.) Right now, a few hours after having taken the first dose, I feel great. No chest/neck pain AT ALL. Hallelujah. It's so nice to be pain free. I have an appointment with a pulmonary specialist next week to find out *why* this inflammation occurs (it is not a common reaction to the chemo drug (5-FU) I'm taking) and the steroid program should get me to next week just fine. Doctor's order to take it easy on the exercise between now and then. Just because I'm on steroids doesn't give me free reign to go out and ride 100 miles this week.

As far as the keister, the A-D meds are doing there job. The frequency of restrooms stops took a big dive today, and the pain was actually less than it has over the past few days (still painful, I'm just no longer drawing blood when I bite down on my arm). So ... a bit of a bright spot right now. Another day down. Another day closer to being done with treatment and being unplugged from the pump.

Thanks to everyone who has been emailing, calling and sending cards extending well wishes. They're all greatly appreciated and do make me feel better.

Monday, March 22, 2010

Day 29

I started treatment four weeks ago to the day. Last day is April 6th, two weeks from Wednesday. I'm counting down the days know because the sun-burned ass thing is really getting old. Each trip to the bathroom is painful - for a brief moment it feels as if I'm crapping molten lava. The doc says things won't be getting better anytime soon since I'm continuing to receive radiation treatments and that it will be a few weeks after that until things fully heal. It's like having a second or third degree sunburn and then going out the next day and laying in the sun again. Crazy. Just crazy. But, could be worse. I could have throat cancer and be eating through a feeding tube while undergoing radiation, a la George Karl - see http://sports.espn.go.com/espn/news/story?id=4997277.

I've been taking Vicodin to manage the pain and looks like I'll be taking it regularly for another few weeks. I've tried toughing it out, but it's just not worth it. Sucking it up for a few minutes is fine, but day in and day out for the better part of the month? It takes a tough person than me - I can't do it. Taking the meds allows me to have a pretty normal day. I can go to work and get some stuff done. This whole thing certainly gives me a new-found appreciation for all of those who have gone through radiation treatment.

The whole chest pain thing I was experiencing last week hasn't really gone away either. The doctors think that it may be inflammation of the tissue between the lungs and the muscle surrounding the lungs (pleurisy?). They prescribed an over the counter anti-inflammatory for it, and that's been helping somewhat. The chest pain will probably be there until treatment ends as well.

Eveything else is going well - no real fatigue, nauseau, taste loss/change or chemo brain. Just the sore butt and chest pain. I even was still able to get out and ride on Sunday - a short, moderate 15 mile bike ride with that same riding group. I'm chomping at the bit to push myself and do more miles with these guys at a brisker pace, but I don't need to push it right now. I have to control myself to stay satisfied with the easier, shorter rides. Although I'd love to exercise more, the weekend rides are all I'm seeming to be getting. Better than nothing I guess.

Tomorrow I get the chemo tank refilled.

Thursday, March 18, 2010

Day 25

Only 12 more sessions of radiation left. That's good because my behind is really getting raw. The radiation oncologist said I'd get sunburned where the sun don't shine, and I think I'm there. It wouldn't be so bad if nothing had to pass through the lower colon, but that's not the case. I mean, if you get a real bad sunburn, and you want to minimize the pain, you don't touch it. I don't have that option. To give you an idea of what if feels like, next time you're really sunburned, scrape a pine cone across it. It's not fun. To make matters worse (much worse) is that I've been measuring the time between bathroom trips in minutes instead of hours. So, I'm getting killed on both the frequency *and* intensity on this. That was earlier in the week. The chemo oncolobixg gave me something prescription strength on Tuesday to tackle the problem, and it's been helping.

Had a little excitement (that didn't involve the bathroom) last night. I noticed some soreness and pain in my upper chest and neck on Tuesday and it just wouldn't go away. I thought it was the start of a cold, which was of some concern to me because with my low white blood cell count, a cold can cause some problems. The pain wasn't any better on Wednesday. So, when I was heading out to meet a friend out for St. Pat's, I cleared my lungs a little bit, coughed into my hand to see if I was coughing up anything interesting and noticed some blood. Uh-oh. Not much - nothing more than what you might cough up if you have a bad coughing fit, but again, I was concerned. So, I called the on call doc and told him my story. He got a bit excited and was concerned it could be a pulmonary embolism, something that people can die suddenly from (yes, he actually said that to me on the phone) and suggested that I get to an ER right away. Now, I'm a bit excited. I went from thinking I may have a little bit of a cold to thinking that I may have a blood clot in my lungs that could drop me on the spot.

So, I drove to the hospital where I'm getting my treatment, which seemed like it took about 5 times as long as it normally does - I wasn't in the best condition to drive, parked my car and headed in. As I'm walking toward the ER entrance, I'm now quite concerned and wondering to myself if I should even be walking. Am I going to dislodge something that's going to go into my heart? My brain? Am I going to collapse right here on the sidewalk? I get in, tell them my problem (emergency room tip - drop the words "chest pain" and you go to the front of the line) and they set me in a wheelchair. "Good idea." I think. "Yeah, don't let me walk around." They wheel me to a room and have me lie in a stretcher. "Yeah, let me lie down. Even better." I call my friends Deakin and Wendy because Tahoe is in my car, I have no idea how long I'm going to be here, and I could use a little company. Deakin took Tahoe to his place and Wendy stayed with me the whole time. Big kudos to those two for helping me out.

To make a long story short, they run a bunch of tests, order up a cat scan and everything came back fine. No pulmonary embolism, no pneumonia, just likely a cold (like I thought). So, they let me go. I picked up Tahoe, went home (got back at 1AM) and crashed.

I thought I'd be dead to the world today with so little sleep but I felt fantastic today. No chest pains, nothing at all. They gave me some steroids as part of the cat scan prep due to allergy concerns and I think that's what really had me feeling great. I mean, I felt fantastic. Way better than normal. I was thinking about having steroids all the time. I came off the steroid high mid-afternoon and am now back to my normal self. Generally OK, but a little crappiness because of treatment.

That's it for now.

Oh, I got a hall pass from the radiation guys for next Friday. Going to Reno for a business trip. I'm extending the stay overnigth to hang out in the casinos, watch some hoops and place some wagers. A nice little mini-break.

Sunday, March 14, 2010

Day 21

Tomorrow is hump day - halfway point of chemo/radiation. Overall, the treatment hasn't been terrible, but really, its had moments where it's sucked a bit. I'm still tolerating things well, but everything is just getting slightly worse. The lack of mental clarity, fatigue and low-grade nauseau occur a bit more frequently now, and with a bit greater intensity. Friday and Saturday really weren't too great. Felt like crap for a good part of Saturday. Probably because I hadn't exercised since the previous Sunday. I was feeling a bit stoned and nauseous so I tried to get bike ride in to try and clear the head. Didn't feel terribly strong and overall, I was a bit ragged, so I called it quits after one 12-mile around the island (was hoping for two ...). Today, I did another ride, this time with one of the local riding groups and it was a lot of fun. Physically, I felt great (hopefully Saturday's attempt at exercise had something to do with that, along with lots of sleep), the weather was good, and the pace was pretty moderate. Felt much better with Sunday's ride. I'm really excited that I'm riding again. I used to ride a lot in high school and a little bit in college, just for the fun of it. I bought a new road bike last fall and am really happy that I enjoy it just as much now as I did then. Helps having a nice bike that really allows you to cruise along without having to work ridiculously hard, like my old bike ... .

It's interesting to see how sensitive my body is to how well I take care of it. If I cut it short on sleep or hydration, I really don't feel too hot the next day. So, this week I'm going to make a concerted effort to get at least two workouts in during the week to avoid fatigue. The last two weeks I hit the wall Thursday afternoon - wound up going home both days because I just couldn't think straight anymore and couldn't keep my eyes open.

All in all, the doctors say that week three was when things really start to kick in. The effect is still cumulative, so I should continue to decline a bit, but based on how I've done so far, I think as long as I manage the side effects with immodium and the occasional anti-nauseau meds, keep exercise, drink and rest lots, I'll breeze through the rest of this and be done with this bout of treatment before you know it.

Tuesday, March 9, 2010

Day 16

Had my chemo refill yesterday. Everything went fine. Blood counts all look good (didn't get the exact white blood cell count numbers, but that's OK - they're not telling I'm neutropenic, which is good). So, I'm all set up for another week. I got a clarification on how many days treatment is going to last (31 days of radiation instead of 28), so my last day is April 5. I've marked the calendar. There will be celebrating.

During the chemo visit, they took off the pump temporarily while the refilled. When I got up out of my chair, I reached for the pump to carry it with me even though they had just taken it away. Carrying the pump with me or making sure it's secure to me is already a reflex. Amazing. Being attached to a pump that is continually injecting drugs into a port-a-cath that goes into my jugular is gruesome to me in the abstract, but being hooked up to it now, I don't even think about it anymore. I mean, if I had to leave with this day in and day out, I could do it. It just becomes part of you. I used to get a bit grossed out when I thought about diabetics who wore an insulin pump that are hooked up in pretty much the same way, but now ... that's nothing. Goes to show how a person can deal with when faced with adversity and how quickly one can adjust to a "new normal".

Last few days have been kind of rough with the food. Everything just shoots right through me. I literally sprinted to the rest room three times today, and was in there another half dozen times. I should just move my name plate to one of the stalls. I've already asked office services to install a seat belt on one of the toilets. Seriously, it's been rough. I'm finally paying serious attention to what I eat to help all this out, and am religiously taking imodium. If this is a preview of what it would be like to have a leaky behind after surgery, I'll sign up for getting the bag right now.

Some people have told me that they're pretty surprised at how open I've been with all the details of what I've been going through - disclosing what type of cancer it is, the details of where the tumor is, all the "bag or not to bag" talk. That way I see it, it's what I'm going through, it's what's on my mind, I need to get it off my chest, and it's my blog. I get to say what I want. I can't imagine trying to keep something like this to yourself.

I've become comfortable with a whole new vocabulary over the past month - rectal, rectum, sphicter, anal, anus, anal verge, anal canal, anal cavity, colon, colonostomy, etc. I don't even think about it anymore. So there. Rectal cancer is not a"glamorous" type of cancer in that it doesn't get a lot of press, although Sean Penn gave it a mention ... asshole (http://www.worstpreviews.com/headline.php?id=16997&count=0) and most people's first reflex is to snicker. I mean, I did. But to be honest, given my sense of humor, it's probably the best cancer I could have. It's so easy to joke about, really, and humor is a way I deal with a lot of things. Privately, some of my friends and I have brought ourselves to tears with joking about this. Anyways ...

I'm attaching some multimedia from today's radiation session

Here's the radiation machine:











And a video clip of today's treatment:

video

The first rotation of the machine is a quick scan to make sure that my body is positioned properly. They want to make sure the tumor is in the same place every time. After that, the real radiation treatment begins. The machine spins around me, stopping at nine places, zapping me a bunch of times at each position.

Warning ... too much info ahead.


In this photo, I'm holding the "clamshell." I'll give you one guess what goes in there. That's right - my 'nads. I have a love-hate relationship with this damn thing. I love it because it's there to help protect my nuts from being microwaved to sterility. I hate it because they're such a pain in the ass to deal with. I have to tape the hell out of the sucker so it doesn't fall off and have to be careful about pinching (it's a tight fit). And once they're on, you can feel it. They're quite heavy, and the clamshell hangs free when I'm lying on my back, so you can feel it tugging. When it's on, I move gingerly on the table. Very gingerly. I inevitably wind up taping the it to my legs or abdomen, so it's another delicate procedure to take this thing off.

Running low on fumes, so that's it for now.

Sunday, March 7, 2010

Day 14

Haven't blogged in a few days because not much to report. The treatment is still going fine, with side effects showing up every now and then. Mentally, I felt a bit out of it on Thursday and Friday, and was probably having a bout with "chemo brain." I just knew I was a bit off and found it a bit hard to really focus on things at times. As far as nausea, I really haven't had any problems sine Day 2-3. Loose stool has been a problem the past two days. Need to do a better job of watching what I eat. I'm noticing that when I get a good night's sleep and stay hydrated, I feel my best. As far as my strength, it's still all there. Took advantages of today's good weather and rode my bike for a few hours. Felt strong. Felt good.

Wednesday night I went with a friend to a talk at Oregon Health and Science University titled "Surviving and Preventing Colorectal Cancer." Even though I had hear a lot of the material, it was informative. My friend Wendy tipped me off to the lecture and attended it with me. I took the opportunity to ask the presenting surgeon about my situation and what he would recommend - LAR (attempt sphincter-saving surgery) or APR (take it all out). Like a good surgeon, he said the decision was mine (of course), but said that for a low rectal tumor like I have, rectal reconstruction "isn't all what it's cracked up to be" (i.e., you can wind up with a leaky bottom.) He also reiterated the overall survival rates for Stage III rectal cancer - 70-75. I've heard these numbers from other sources, and they're all in the same range - 60-75% for a five year survival rate. They're pretty good odds, but a bit low to my liking. So, (re)hearing that news put me in a sour mood the rest of the night. But, I'm back to being positive. Things could be so much worse, and I've got a lot of things going for me that will get me through this, not the least of which is the continued encouragement from friends and family. It all helps.

Tomorrow it's back to the radiation room for week #3 of radiation treatment, and to get my chemo refill. Curious to see where my white blood cell counts are.

So, all in all, I'm doing fine and living life as "normal" as possible. I still get on myslelf for not doing more in terms of reading and researching what I can do to maximize getting cured, but I'm doing what I can.

Tuesday, March 2, 2010

Day 9

Today I met the dietician oncologist to see what I can do from a food intake standpoint to help beat cancer and stave off its return. Overall, she says I'm doing pretty well with my diet, it's pretty healthy, but she pointed out where I can fix some things. She did say that I need to "return" to my "ideal" weight of 205. I'm at roughly 230 now, and know that I need to trim down a bit (who doesn't), but I haven't seen 205 since I was an undergrad in college. That's a lot of work to get there. She said 215 would still be great, but the studies say that the leaner cancer patients are post-treatment, the lower the odds of having cancer return. That's all the motivation I need to make that happen. Nothing to start working on now - starting a weight loss program during cancer treatment really isn't a good idea. I need to maintain my weight to stay healthy.

A new side effect kicked in today - taste change. I was told that one of the side effects of chemo is that food (especially meats) can start having a metallic taste. I wouldn't say that things are tasting "metallic", but the amount of taste is now diminished and things taste different. It's like there's a sock around my tongue that I have to taste food through. I had Indian for lunch at a place that I really like, and where the food is quite tasty (spicy), but it wasn't the same.

I also had a bout of nauseau and last night's dinner (another salad) rammed through me pretty quick. All the raw veggies and fruits that are normally so good for you because they're full of fiber are to be avoided with chemo. The chemo attacks the gastrointestinal tract, which causes fibrous foods, which already do a pretty good job of cleaning you out, to do the job even quicker. Throw in radiation of the lower abdomen and its time to lay off the leafy greens.

Shit ... my pump just started beeping at me. Loudly. It says "Error 1816". What the f@#$?!? ... I don't think it's supposed to be doing that ... Hold on ... Just called the pump hotline. They're paging an on-call nurse "who will call me back shortly." Nice. I'm stuck here with a pump that's responsible for pumping toxic drugs into me that won't stop blaring. Tahoe just woke up and he's looking at me like "Dude, that's loud." He just left the room ... OK. Here's the phone call ...

She had me take the batteries out and put them back in. (Sounds like our IT team at work.) The pump is reading the same remaining volume before it went nuts. Thank god Error 1816 wasn't something like "I am now pumping all available chemicals into your jugular vein." Seriously ... I told the on-call gal that this was NOT COOL. She said sometimes these pumps "just freeze" and need to be rebooted. Just freeze? Are you KIDDING me?!?! You hook up a guy to an infusional pump delivering very toxic drugs, drugs which, when they first hook you up they say "make sure you flush TWICE after peeing and even then, don't let your dog drink out of the toilet" and it's prone to "just freezing"? I'm amazed. I was told these things were bomb proof.

The pump seems to be working fine now.

I had more to say, but it'll have to wait until tomorrow. I'm a little distracted. Need to go listen to some relaxation tapes ...

Monday, March 1, 2010

Day 7

Started my second week of treatment today. Went in for my daily dose of radiation and got my pump refilled at the medical oncologist's office (I'd have refilled it myself, but this *is* Oregon, after all). Refilling the chemo drugs was the shortest part of the visit. They have to draw blood, do the bloodwork (a long wait) to see how I'm responding. Today, my white blood cell count dropped in half. That seemed like a pretty sharp drop in one week's time to me, but they weren't terribly surprised by that. If my white blood cell count drops another 10-20%, and another blood work number (neutrophils count) drops too low, they're going to scale back my chemo or give me a break. They want to keep me from becoming neutropenic, meaning, I don't have enough white blood cells to fight off infections. Getting an infection when your body can't fight it can lead to complications (one of those loaded words that doctors use when they want to something really bad can happen).

So, I'm all ready to go with week two. I've been feeling great since last Friday. Four days in a row now with no need for any anti-nausea pills. Felt good enough to go out yesterday and get a nice, brisk 20-mile bike ride in. I don't expect these good times to last, but I plan to enjoy them while I can.

By the way, March is colorectcal cancer (CRC) awareness month. So, be aware! Even though I have the CRC blue bracelet, I don't plan on wearing it. I'm already quite aware of colorectal cancer, and I don't feel the need to broadcast that I'm having to deal with it.

We had an awesome weather weekend here last weekend, so that, along with feeling really good overall, I pretty much got to ignore the fact that I'm going through this. But, this morning I felt I was ignoring my responsibilities to do everything I can to beat this. So, I'm back at it today. Picked up a few more books from the cancer support center on nutrition and lifestyle. It seems the formula to prevent, defeat or survive cancer can be boiled down into two words - "Live Healthy". Clean up your diet (cut out the crap, add the good stuff, eat less overall), exercise and keep your head right (be positive, no depression, etc.). With "Live healthy" in mind, you can pretty much predict the outcome of 90% of the studies involving cancer and lifestyle that are out there. For example, people who are overweight, sedantary or have high cholesterol are more likely to cancer those those who are in shape, active and eat well. Not too surprisingly, really.

That's it for now. Still plugging away, still doing good, still learning what I can.