Purple Everywhere

Purple Everywhere
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Wednesday, January 2, 2013

Seventh Adcetris Dose

Dr. Wendy can no longer feel the largest tumor at the bend of my right leg. Wow! Wouldn't that be awesome if the cancer is gone!

I've lost 13 pounds since the last dose. That's just over 60 pounds total over the last nine months. Yahoo! I want to lose at least 15 pounds so I'm no longer in the obese BMI category. Dr. Wendy is concerned, but I've been eating well so I'm just grateful.

We have a longish conversation about peripheral neuropathy though. I'm not happy about that. I describe some of the limitations I've noticed:

* Fingers are completely numb and my hands are at least 3/4 numb.
* Forearms are at least 1/2 numb up to my elbow.
* Feet are at least 3/4 numb.
* Legs are at least 1/2 numb to the bottom of my knee.
* Typing is very difficult and I often hit the wrong key. Backspace is now my best friend.
* I can't play the piano or organ any more without having to watch my hands to see what keys I'm playing, plus I can't control that they continue to hold any keys so they randomly lift and quit playing at odd times on the organ.
* My handwriting has changed drastically and now reminds me of an 80 year-old woman's handwriting because it's difficult to hold a writing utensil and control the strokes.
* I can't button blouses or jeans or feel zippers to pull them up.
* Hooking my bra is impossible.
* Putting in earrings and--even more difficult--putting on their backs is now impossible.
* It's hard to walk in flats. Forget heels entirely!
* Balancing is almost impossible on dry ground. I fell in Target and have almost fallen twice at work. Didn't trip on anything; I just can't feel my feet to place each step securely and firmly.

After leaving the room for a few minutes, Dr. Wendy returns to say I have peripheral neuropathy, Grade 2 or 3. The guidelines for Adcetris call for stopping chemo until Grade 1 returns.

I'm not comfortable with that. These affects can be permanent. What if we never get back to Grade 1? After some discussion, she agrees to continue Adcetris, but on a reduced doseage. We will reduce the 1.8 unit/kg to 1.2 unit/kg. I don't like that we're reducing the dose by a full third, but at least we're continuing forward.

Do you know what else I've noticed? The doses are getting easier. What's up with that? In my entire history of chemo, every dose gets harder and harder--zapping almost all of my physical and emotional energy. Plus, every different chemo regimen gets harder and harder for my body because of all the former rounds (MOPP, ADV, ICE, BEAM, and now Adcetris) and poisons doctors pumped into it.

Not now. In fact, I've even started driving in to work 2-3 times a week. Wow! I'm am definitely not complaining. I have energy to do whatever I want (as long as I don't try to move my numb feet too fast) and I'm mentally alert as well.

The nausea is contained. The bone pain is being managed. This is great! More than I ever dared to hope or plan for. Hooray!

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