Walking The Thin Man

In May 2005, I learned that I had developed amyloidosis, a rare protein folding disease. This is my story.

Sunday, August 07, 2005

Day + 30, State Of The Recovery

A small milestone, but one nonetheless -- we've hit the one month mark. I thought that I'd write an overview about the first 30 days, and give a synopsis on how I'm progressing thus far.

When I started this blog, I referred to my melphalan / stem cell transplant treatment as the "nuclear option". I could never have imagined how accurate this description was. When a nuclear bomb explodes, it is silent for a split second. Then, it explodes with amazing force that devastates everything instantly. It produces a mushroom cloud which lifts radioactive material into the air. This material falls back to the ground, which causes additional destruction long after the bomb has exploded.

The high-dose chemotherapy works the same way on your body. When you get the chemo, you feel nothing for a few days. Then all of a sudden, it goes to work killing all of your bone marrow. On Day + 4, the chemo makes it to the bone marrow. By Day + 6, all of your white blood cells are gone.

The chemo is flushed out of your body in a few days, but its effects go beyond destroying the bone marrow. It also disrupts the production of all fast-growing cells in the body such as taste buds, hair on your head and intestinal mucous membranes. This happens at a slower rate, and you do not see or feel this damage until weeks after the chemo has passed through your body. My hair did not start falling out until Day + 10, and even to this day I am still shedding like a Siamese cat.

While I am starting to feel more like myself, at Day + 30, I am still under a lot of fatigue. It forces me to take many naps during the day, and often times I do not feel like doing things I want to do (or have to do). I recognize that it will take several more weeks before I see some improvement in this area, but it is frustrating waking up and feeling no better than the day before.

But there are already some signs that I am healing. For starters, all of my taste buds have nearly returned. There are only a few things remaining which taste like paint thinner. The shedding of my head is slowing down. Facial hair looks like it may start growing again in a few weeks. And of course, I have my sense of humor back :)

The edema has been reduced to the level it was prior to my treatment: uncomfortable, but manageable. We'll get the rest off, eventually. I'm just thankful I'm no longer carrying 30 pounds of the stuff.

They say the next 30 days will follow the same theme as the first: steady but very slow progress. It's a frustrating wait, but I'll know I'll get there.

1 Comments:

At 8/08/2005 1:05 PM , Anonymous Anonymous said...

Congratulations Tony :) You are a fighter !!! Rannveig

 

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