Two Steps Forward, One Step Back

My infections cleared up enough that the doctor and the various nurses all agreed I could move forward with my treatments. I had a brief (but effective) teaching session on how to mix my interferon, then the nurse made me do my first shot. I now understand why nurses jab in the needles – slow equals pain! Things seemed to go pretty well, though. My new dose is about half of what I was receiving via intravenous, so I assumed the side effects would most likely be half as bad.

I was wrong. About three hours later, I started getting the chills, so I took my Motrin. It helped, but I suffered chills for about a half hour. Not too bad, I thought. Still some side effects, but it’s manageable. Then, about seven, I started getting chills again. I have never had chills twice in so short a time. The only other time I got double chills was about seven hours between bouts (early IV and early Motrin), but only four hours later? Did the Motrin not work or something? I took some Tylenol and tried to eat (not too hungry and not enough energy to eat) and went to bed early. I was kind of hoping to get decent sleep to make everything feel better.

Again, I was wrong. I tossed and turned all night. I felt chilly, then I ran a bit of a fever, then I was freezing again. Throughout the entire night, I had a low-grade headache. Probably much of this was related to dehydration; I know I didn’t drink enough water yesterday.

Then this morning, I got up and my stomach was grumbling from a lack of food. My wife ran out to Dunkin for the boys (we had three 12 year olds sleeping over, or NOT sleeping, at least until three-ish) and got me a coffee and a blueberry muffin. Everything was good until about eleven, then I had HUGE stomach pain, like a giant gas bubble. I was almost crying from the pain. Maybe it was constipation because I did have bowel movements and I feel much better now. Being sick is ridiculously gross. My wife wants me to call the hospital, but I think I should wait until we see if I have a relapse. If not, I can mention it when I go in on Monday.

Now I’m dreading the self-injections because if I’m going to feel this bad after each shot, I’ve got eleven months of miserableness to go. Hopefully, things will get better with subsequent shots and I’ll have a better world view.

On the plus side, my infections are all clearing up. I’ve finished my antibiotics and I’m still using the topical steroid. The big infection is down to just being a red blotch and the smaller infections are virtually gone.

The Saga Continues

Yesterday, I made a last-minute appointment with my dermatologist, nominally to have a look at my infections. I also had her do the whole full body scan, which I had scheduled for next week. Two birds, one stone.

So she took a look at my infections and she was satisfied with the variety of antibiotics. But she added a topical steroid to the mix, and two different moisturizers – a cream and a gel. At least my skin will be moist. My clothes will be moist, too. She did a culture of the infection which kind of looks like herpes (the kind that causes shingles, not the STD) so we’ll find out what it is soon enough.

Right now, everything is on hold. I can’t wrap my leg to start treating the lymphedema. I can’t learn how to give myself injections. All I can do is take antibiotics, dab on steroids and slather on moisturizer. And hope everything starts to clear up before the weekend. The longer all this lingers, the longer it takes to get through the process and figure out what my new “normal” looks like.

I’ve now got a refrigerator full of interferon and a bag full of hypodermic needles just waiting for the doctor to tell me to get to work.

In order to keep my sanity, I’ve been really good with keeping my focus on just the one issue at the forefront. It’s too hard to try to worry about three or four different things, with a dozen different variables. Right now, all I should be thinking about is getting over my infections. Unfortunately, my mind is wandering to other issues. What will the Medical Duty Review Board say about my lymphedema? Will I be able to stay in the military? Will I be medically retired or discharged? It matters because the retirement means more money. Oh, and then I need to decide what I want to do for the rest of my life, since I’ll still need to have a job. I’m spending way too much time worrying about losing my job when I need to focus on infections.

I just need to get my head screwed on straight and get my focus back. After that, the rest will fall into place.

And the Hits Just Keep Comin’

I have completed the initial four weeks of interferon treatment, which wasn’t too miserable. Not that any treatment is great, but I didn’t have too many side effects. I got the chills, but taking Motrin short-circuits those pretty quick. No nausea. No headaches. Just an occasional queasy feeling. And fatigue. That’s the killer. I never felt completely exhausted, but I always felt run down enough that all I wanted to do was sit down and nap. Every night I’d get in from treatment, sit in the recliner and rest. I feel bad that my wife has to wait on me so much, but I run out of energy pretty quickly.

But that’s not what I’m writing about today. Last Friday, I had my first physical therapy appointment with Sarah. She took a bunch of measurements of both of my legs, which is the first step of treating lymphedema. My right leg (the site of my melanoma) is, indeed, suffering from lymphedema. My appointments with PT for the next two weeks are supposed to show me how to wrap my leg to reduce the swelling. I am supposed to be mummified for twenty-three of twenty-four hours a day. Except she noticed a rash on my right ankle. Which I mentioned to the nurse when I went in for my last infusion. Which led to nurses and doctors gawking at my leg because I had another rash on my incision on my thigh. The doctor said it looks like herpes. No idea how that could have happened. Sure, cold sores and chicken pox and shingles are all types of herpes, but what the He’ll is going on with my body? Now I’m on two different antibiotics for a week, I can’t get my leg wrapped while sporting infections and I still need to learn how to self-inject.

I hate cancer and lymphedema. And infections.