Ray’s Blog

This is what I have been predicting. I couldn’t make it in to work on Monday because I still had not recovered from this last session of chemo. This is when I need to stay strong, as the good days get taken away from me. I made it in to get my last neumega shot and I did still go to my therapy session but I was kind of a mess. In fact, on the way home from my therapy I almost got into an accident around the bridge which is a bad spot for anyone but apparently especially for me now since usually I’m fine there. I’m not even half way through and at this rate I’ll be dead before it’s all over. I’ve heard that they want to bring you to the brink of death so they know it’s working. So it looks like I’m well on my way towards reaching that goal. Before leaving the cancer center this last time, I was making my usual appointments and, after I had finished, the receptionist asked if that was all I needed. I said why don’t we do some extra chemo this week, I love this stuff. It brought a laugh but underscores that no one if they had a choice would ever do this therapy except if it meant life or death. And it does.

Most people see me when I’m feeling well enough to be out. That’s not to say that I’m squatting down in a rice patty, dropping a baby, and getting on with it, but I’m functioning at a relatively healthy level. Most who see me say I look good and that’s good for me to hear as well as feel. Some ask why I still have my hair, some wonder how I can work, some surprised ones probably think I’m already dead. The thing is what people don’t see. It’s not quite like an iceberg but you get the idea - when you don’t see me and why you don’t see me is because I look and feel like cancer. And the more I’m on chemotherapy, the more I am cancer. I was told today that my hair looks good, which is good to hear and relative to many cancer patients it’s really true. But my hair has probably thinned by 50% so to ME that’s not so good. And hair will grow back so what’s the big deal but, as a demonstration, to prove that my hair isn’t that good, for a small audience, I grabbed at my beard, gently pulled, then released half a dozen hairs onto a napkin. That’s not normal. That’s cancer. And I have it no matter what I look like.

Well, as I told you, the Neulasta shot did it again. That’s why I haven’t written lately. Although I have to admit even the chemo this time had me fatigued. But that f’in shot drove it home. Even after sleeping for eight hours, I slept for most of Friday, and Saturday I was in bed all day. Sunday was better but I still took a two-hour nap during the day. I got a good tip from a fellow chemoer who recommended ginger Altoids for the bad taste you get in your mouth from chemo that never goes away. It really helps. Taking my medication also helps me to feel better but on Friday I felt awful and sleeping was a welcome escape. At least I’m not nauseous and puking my brains out (although I have medication for that if it should occur). The cold is really getting to me. I can’t breath outside anymore without going into a huge sneezing fit. I need to filter the air and heat it up before it gets to my throat. I’ll be getting something for that soon.

Twice now I have shat in my pants because I think it’s gas but I get something else instead. Gas is a huge side effect of the chemotherapy as I have alluded to before. Sometimes it really smells sometimes not but there always seems to be a huge supply. Now with the increased diarrhea (which I am now combating with increased imodium) it’s a mixed bag as far as what comes out. So now I have to be really careful and err on the side of caution and not push anything out unless I’m sitting on a toilet. Christina procured some Depends things that look like maxi pads (not diapers to pamper me with) which is interesting in a way since I’ve been calling my chemo treatments cycles and comparing it to having a period. There’s blood and cramps and moods, and now there’s maxi pads too! Although I would say the smell is worse with my period.

Beyond that, I’m on the pump again and down to less than 80 ml at this time (from 96ml). Side effects are getting worse after each successive treatment and that neulasta shot on Thursday is going to be a Duesy. Until then, I’m at least not fatigued and I’ll be taking advantage of that. I’m planning on being at work tomorrow for a meeting then working from home for the rest of the day. That’ll be a first for Wednesday, last time I made it to the office on Thursday with the pump, so we’ll see how that goes although now everyone at that meeting who has read the previous paragraph may ask for a postponement.

Get your tickets! Complete session #4 but session #5 overall starts tomorrow and we’re all so excited about it! Well, really, I’m not looking forward to feeling like shit for the next five to six days but here it goes. I’m hoping I can get some advise from a nutritionist and maybe use some of the pro-biotics I bought if my oncologist says it’s OK to smooth things out this time. Maybe some energy bars? If I can even stomach them. Again, thankfully, my laptop is here so the world will be at my fingertips even though I may be stuck in bed and I can communicate with the outside world.

I’ve been listening to some great music lately. My favorite song of the moment is “Old Fashion Morphine” by Jolie Holland. See her in New York if you can this Thursday at the Highline Ballroom. I can’t because I have f*ckin’ cancer.

My hair is getting to the point where I’ve decided I’m going to start wearing a hat in public. The first deluge of escaping follicles began after my surgery. I was told the anesthesia can cause this but I would imagine a good trauma could too (gee, have I had some of those lately?). Then, since the chemo started, it’s been a steady exodus, and without rogaine or hair club for men replenishing the crop, it’s gettin’ pretty thin. To the point where it just looks like a bad hair day every day. I’m lucky that I had a lot of hair to begin with so I kind of had a jump start on the thing. My therapist was asking me how I would handle the hair loss if and when it happened. How many people identify having hair with strength and its loss with weakness. To me it doesn’t matter. At least I consider it a temporary situation. But to have hair or not, to shave it all if there’s some deficiency to me is not an issue at all (but I do draw the line at the comb over). My appearance is what it is so just suck it up.

Well, I’m feeling good but I can see my window for feeling that way is shrinking after each chemo session. I need to counteract this somehow. Through nutrition is one way. More sleep would probably help. I’m starting to read about supplements that could do the trick. Maybe even some exercise when I feel up to it. Unfortunately, I don’t have a lot of time to experiment. I just need to keep a look out especially when I have the energy in the times I feel close to normal. The real measure of my fitness will be how long I can maintain my six days out of ten at the office. I was a little shaky at the start of this week. I had to leave a little early yesterday ’cause I just felt tired. I can still work from home as much as I need to but being in that office helps me to feel at least semi-normal so to maintain that as long as possible will do me well as well as indicate how well I’m handling chemo.

Well, depending on how you score it, I’m either a quarter or a third of the way through chemo and it just keeps getting worse. Although I am medicating myself better. Adjusting things in a strategic way. Like with Imodium. The directions tell you to take it only after you’ve had a bowel movement. Well, sorry, that’s too late. I had diarrhea from Tuesday to Sunday last time using that method - it just didn’t work for me (could it be just me?). This time I was proactive and just took it twice a day for the first three days, bowel movement or not. Now, I did get worried after the third day without any BM and that’s when I decided to stop taking it. I wanted to stop the diarrhea not the whole system. I can now say that I’ve gotten through Sunday with perfectly normal stool. One small victory for me. I’ve conquered my own poop. Whoopee!

This year, Halloween was very different. It’s the first time I have been a non-participant. I received two shots yesterday, one neulasta and one neumega and those things knock you on your ass! Neulasta effects bone marrow and encourages it to produce more white blood cells. Neumega is to increase my platelet count. Both counts need to be high enough so I can get my chemo. I was feeling not so bad yesterday. I was hooked up to my pump and at work. But after those shots, BAM! Taking ativan is helping me get through it but I’m just exhausted. I took four hours worth of naps today after getting a good eight hours of sleep last night.

I dragged myself to my in-laws for the kids’ trick-or-treating. All I could do was lay there on the sofa. This will be one Halloween with missing video. I sent Christina out with the still camera instead. I just did what was easiest. This was the worst timing. If it had been one week from now or even a couple of days from now, I would have been fine. I wonder how I’ll be for Christmas? There’s no way to tell. I’m starting my shopping now, and online has never been so convenient or needed. Thank (insert deity here) for this laptop!