Wednesday, October 27, 2010

5:1:6

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

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

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

Monday, October 25, 2010

5:1:4


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

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














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

34 days to go ...

Monday, October 18, 2010

4:3:4

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

41 days left ...

Thursday, October 14, 2010

4:2:7

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

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

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

44 days to go.

Monday, October 11, 2010

4:2:3

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

"Daisy ... Daisy ...."

Monday, October 4, 2010

4:2:1

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

--

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

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

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

And then some.

--

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

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

--

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

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

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

Sunday, October 3, 2010

4:1:3

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

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

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

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