Walking The Thin Man

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

Tuesday, September 05, 2006

Day + 11: One Foot Out The Door

This morning I woke up to a bit of hair on my pillow. It seems that the hair loss has begun. Sigh. I'm hoping that it won't be as severe as my first transplant, as I did receive a lower dose. Also, it's important to note that my hair grew back from my first transplant much darker and thicker, which will hide the 'baldness' a little better :) I actually don't get bald, but the hair does thin out quite a bit, which looks kinda freaky.

My platlets have jumped a bit to 24,000, which puts me out of the risk of requiring a blood transfusion. This is a rather amazing achievement, as about 95% of all patients require at least one of them during the treatment. My doctors are amazed that I was able to make it through not one, but both stem cell transplants without needing a transfusion. It's rare, but then again, someone my age with amyloidosis is also quite rare. It seems my body is still young enough to recover through the chemo vigorously.

That's not to say that I'll be running marathons anytime soon -- I'm still affected by the same side effects of the chemo at this stage again:
  • General fatigue and lack of energy. At the end of the day, I am still exhausted.
  • Slightly impaired brain function. They call it 'chemo brain', and it manifests itself as not being able to think straight or focus on any one activity for a long period of time. It's very annoying. You'll probably notice that the flow of my posts are random and not consistant. That's the chemo talking.
  • Dry mouth. This is quite common after chemo, and becomes annoying after a while. It differs from regular dryness in that you can drink all night and day, and your mouth does not retain the moisture.
  • Loss of taste. Like after my first transplant, my ability to taste certain foods has been comprimised. It's difficult to explain this sensation to anyone who hasn't experienced it first hand, but let my put it this way -- imaging try to eat something while wearing a condom on your tongue. (Not that I have ever done that!)
On the other hand, it's becoming a challenge reporting all of the new developments with my recovery at the hospital -- there simply hasn't been any other setbacks for report of. Thankfully. I'm moving at such a fast clip that they have given me tomorrow off, and will check my platlets again on Thursday. If they are happy with the progress, then they will take out my catheter and discharge me from the hospital. Woohoo!

1 Comments:

At 9/06/2006 4:44 PM , Anonymous Anonymous said...

Hey Tony!
My family and I read your posts every day. It's great to hear you are holding up nicely (considering). In case you missed my post a few weeks ago, my dad has Multiple Myeloma and Amyloidosis (56 Years old) and will have a SCT in a few weeks. As a matter of fact he is having his catheter inserted as we speak. Can you give me more specific details about the ice chips? It baffles me that the doctors here in Alabama have never heard of eating ice to prevent mouth sores. When do you begin to eat it and for how long? I'm so glad we found your blog, it has really helped us along the way.
Our thoughts and prayers are with you during this difficult time and I hope you get excellent results!

Jill

 

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