Steroids

First of all, now that I'm cancer free*, I've decided that I'm not Living With Carmichael anymore.  Hence the blog title and URL change.  100% Go For It! is my new attitude toward life and, in particular, work.  I really want to get back into work in a big way, and though physically I'm still a bit weak I think I'm finally getting in to the right mindset to get some work done.

In other news, steroids suck.  I'm on 72 mg of methylpredinsalone each day: 60 mg in the morning and 12 mg at night.  Sure, I guess they're giving me anti-inflammatory gut-GVHD-healing powers, but the side effects are terrible.  I'm all puffy with edema, my muscles are severely weakened (though they are getting stronger with use), I'm temporarily diabetic and have to manage my blood sugar with insulin injections, my appetite is absolutely ridiculous, and sometimes -- like right now -- I can't sleep. It kind of puts a cramp in my new 100% Go For It! attitude when I know I'm going to be tired in the morning, but there's nothing for it but to take more steroids and keep going.

To give you some idea of my appetite, here's what I ate today:

• 6:30 AM: Full bowl of Corn Pops cereal
• 7:00 AM: 2 Hard-boiled Eggs (including yolks)
• 8:15 AM: 2 Turkey sandwiches and 2 pickle spears (this was supposed to be lunch, but I got bored and hungry while waiting for a bus)
• 9:30 AM: 1 bag of Doritos (I needed something to snack on at work!)
• 12:00 PM: 1 Double Quarter Pounder with Cheese and 1 Large Fry from McDonalds (I'm not supposed to eat out on my neutropenic diet, but I can't resist sometimes; at least I nuked it in the microwave before eating it)
• 2:30 PM: 1 bag of animal crackers (I needed a snack after a meeting with my advisor)
• 6:00 PM: 1 large beef stir-fry (I estimate that my recipe serves 3 and I had half of it)
• 7:00 PM: 1 popsicle, two somewhat large pretzels, and a handful of gummy worms
• 8:00 PM: 1 entire quarter package of Saltines
• 10:00 PM: 3 cups of beef broth
• 2:30 AM: A handful of Corn Pops (I'm starving and I can't sleep -- not a good combination!)

I really don't know how many calories that is, but the McDonalds is probably over 1000 alone, not to mention all of the soda I've been drinking throughout the day (at least 2 20oz pepsis and 4 12oz cokes). The doctors sent me home with the instructions to try to limit my diet to about 1800-1900 calories per day; it just cannot be done!  Not on this many steroids. I'm hoping the doctor will cut my dosage down on Thursday, but I have a feeling he won't because I am still occasionally having a little bit of diarrhea and I think that's their metric for reducing the steroids. On the other hand, maybe the CT scan I got on Monday will show a drastic reduction in the inflammation in my gut and they'll feel more comfortable reducing my steroids. I wouldn't be surprised if the CT scan were very positive; in general I've been having healthy bowel movements and my GI tract feels fine now.

Okay, an hour later it's 3:00.  The real question: can I get back to sleep?



*A recent bone marrow biopsy indicates that I have 0% cancer in my stem cells and 0.004% cancerous cells in the blood stream -- supposedly the graft-versus-host effect of the stem cell transplant will eventually totally fix the blood stream but it takes time. I'm not sure how many significant digits there are on the 0%.

One step forward and two steps back

Well, no one said a stem cell transplant would be easy.  For a long while, I was tolerating the effects of graft-versus-host disease, an important part of the healing process because it comes along with the graft-versus-tumor effect that will guarantee that my cancer does not return.  A recent bone marrow biopsy revealed no cancer in my stem cells, and a very small amount in my blood stream (which is apparently OK, and what the graft-versus-tumor effect is taking care of).

Unfortunately, I finally got to the point where my graft-versus-host disease was no longer tolerable.  I had between stage 2 and stage 3 GVHD of the GI tract, and it got to the point where I couldn't keep anything down; I was vomiting nonstop and had unstoppable diarrhea.  So, I was readmitted to the hospital and put on a ton of steroids and immunosuppressants just as I was when I was initially treated for the stem cell transplant.  So in some sense, I feel like I'm back to square one.  But at least I have hair now!

Still, despite being back on as many --- actually more --- meds as I was back then, I am actually feeling a lot better than I had been recently, so that's good.  The only problem right now is that my hospital stay has once again left my muscles fairly atrophied.  I'm slowly building my strength back, though.  I'm able to get around the apartment pretty well at this point, though I still need to use my arms to stand up from sitting down.  Getting up and down the three flights of stairs to my apartment is still pretty tricky.

In terms of keeping my spirits up, I made a very good purchase recently: a Nook from Barnes & Noble. I absolutely love it.  I wish I had it during my recent hospital stay, but at least I'll have it for the next one.  It is incredibly comfortable to read books on it.  It feels like it was designed for my hands specifically. I suspect I will get a lot of use out of this thing; I've already read four of the Dresden Files books on it.

Additionally, I got a recipe book.  I've been having quite a bit of fun with it, and I've made a few really good dishes.  I also misinterpreted something that resulted in a glassy explosion.  It nearly traumatized me, but Ted helped me clear it up and calm down.  Hopefully I learned something and won't make the same mistake again.  The Nook isn't great as a cookbook since it takes some work to get to the recipe you want, so I might need to get a hard copy. At the same time I'd prefer to just develop an intuition and a mental repository of recipes, maybe even just compiling my own little recipe book from the recipes that are a success.  So far, my big successes have been jambalaya and something I'm going to call a lemon catfish pocket.  I'm fine with making scrambled eggs and bacon, though I had some difficulty with pancakes.  My home fries weren't quite right, but they were still tasty and I think I can fix them with some work.  In short, as per doctor's orders I've been cooking every single thing I've eaten for the past week, and it's been a lot of rewarding work.  And I've been eating a lot; the steroids make me ravenous.

So that's a basic rundown of my current status.  I haven't even been thinking about work, but I'm hoping I'll be able to start back up on Tuesday this coming week.  I really need to find a way to get back in to programming, research, and graduate school.  It's remarkably difficult to get back into the swing of things when you've been on such a long hiatus; not only is my confidence shaken, but I'm not sure where to even begin working again.  I guess all I can do is my best.