Ray’s Blog

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.

After my whole vasospasm thing I was in for a session and overheard a nurse telling a patient that what I had as a reaction was a possibility (she even pointed me out as someone that had actually happened to). This is progress. I wish I had been told the same thing when I had my first session. But if through their experience with me they’ve updated their procedures to include discussing it, that’s great. I’ve found that doctor’s are reluctant to tell patients what all the side effects or reactions may be for fear they will somehow manifest them psychosomatically or get overly anxious about it. This to me is treating adults like children. Of course if they are treating another doctor, they’ll talk about all of it. So I was happy to see the change.

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.

I was fortunate enough this weekend to go to Queens for a family get together. The last one I had to miss because I wasn’t feeling up to it, so I had to cancel my plans to go. That’s what happens when you’re on chemo, you can’t make plans and everything has to be played by ear. So this time we made it down and my brother was entertaining the kids by watching one of the Back to the Future movies. They made it to a scene where Doc wants to test the time machine and for the test he decided to use the dog instead of a human. My kids were appalled. They were asking how anyone could do that to a dog. Just send him out in the machine when they didn’t even know if it worked. They were really upset and my brother had to talk them down by telling them that he knew it would work, Doc just wanted the dog to go first, or something like that. They were happy with that explanation. When you watched Back to the Future, did that scene phase you at all? Did you care about the well-being of that dog? I’m so proud of my kids that they were not just watching the movie, but examining it and thinking about it and that they care so deeply about other species and protecting them.

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.

Enjoy this jazzy version of the cartoon’s theme.

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!