19 Years Later (in five parts) V

April 21, 2012.

This was my Day 100. It's the first major milestone for a BMT patient after discharge. Dr. Grant gave me the go ahead to open up my diet. The huge change was that I was now allowed to eat fresh fruits and vegetables. This is a pretty amazing feeling when you can only eat pre-packaged, canned, and frozen garbage for three months. I celebrated by eating a cobb salad.

The other huge change was that I was now allowed to walk inside other buildings, so long as i wore a mask. This means I could finally do my own grocery shopping and pick up my own prescriptions. I could also order take out food, or buy it from a restaurant. I couldn't eat inside, but I could now eat things like a california roll. Raw fish is still no good. Deli meat is still off the table as well.

After this, life began to speed up a good deal. The days were going SO SLOWLY for the longest time. But a lot of good things happened in May. I got a lot more energy. I bought a season pass for kayaking on the Charles river and went a couple times. I started to get freelance work again, so I updated my system.

A bit of background.

Before I got sick, I had been living in NYC as a kid trying to make it in the film industry. Well, somehow it actually worked and I chose sound as my field of choice. So I had a small system at my apartment, but for the most part just worked for my employer at the studio. I mixed things for broadcast TV and got to mix a feature film for theatrical release as well (this movie used 6 speakers! It's an entirely different way of mixing, altogether!).

It's an entirely different way of mixing.

So I started to get work that I could do from Kym's apartment, and that has only picked up. I've missed working, so this is pretty great.

Oh! And I got a CT scan. Remember back in October when they took out my blood spigot because there was yeast in my blood? Remember how I was taking those stupid almond shaped pills? Well I'm still taking them 7 months later. The fevers I was having in late December were caused by this fungal infection. They did a CT scan and found fungal nodules on my lungs, liver, and spleen.

Ew.

But now we are trying to get me off of that. I had a CT scan at the end of May and the nodules were gone, but they also saw increased inflammation which could be a result of any number of things (including the fungus). While the docs were pretty sure the infection was gone, ultimately they ruled it inconclusive, and I'll get another scan on June 27th to determine if I can stop taking those pills. Currently I am taking 600mg of Fluconazole one time per day.

Hmm.. other medical things to catch everyone up on...

Prednisone! It's a steroid used as an immunosuppressant. It was helpful to prevent GvH, but I am happy to say that as of my last visit, I am no longer taking it.

Tacrolimus. This is used to prevent more broad GvH. It makes me shake, which is kinda funny. If I have too much of it, I begin to twitch, especially when I'm tired. That part is annoying. Fluconazole and  tacrolimus are both broken down in your system by the same enzyme, so when I am taken off of the fluc (pronounced flook), my tacrolimus will be getting an adjustment to make sure the levels in my blood stay the same.

Magnesium: Tacrolimus breaks down magnesium in your system. So right now I am taking 800mg of magnesium oxide 4 times a day (3200mg/day total).

Folic Acid: Helps cell regeneration.
Multivitamin: Gives me multiple vitamins.
Bactrim: Prevents fungal lung infections. I'll be on this for at least a year. Apparently it has a pretty nasty reaction to alcohol, so that's out for a long time.
Acyclovir: Anti-viral. Prevents things like shingles. I have the viruses that cause mono and chickenpox in my nervous system, but no immunity. Without this drug I would be in a world of pain.

I think that about covers it. I got myself a primary care doctor in the area. This is important because if something happens where it's inappropriate to visit an oncologist (see: broken leg), I still have someone I can go to who knows me. She is part of the same hospital so they share all medical records which makes things very easy.


So here I am. It is now Saturday, June 16th, 2012. The last few months have been almost unbelievable. I still don't know how I feel about it. Sometimes I feel angry, sometimes I'm just looking forward to the future. Other times I feel grateful... It's hard to pin one thing down, but most days I am just happy that Kym and Bill happened to be at my parents house that one week in October.