[extropy-chat] Jim Lewis Update
nanogirl at halcyon.com
Tue Jul 13 21:13:40 UTC 2004
Dear friends, as often as I can I will try to report to you Jim's experiences throughout his treatments. For those who don't know, Jim is the Foresight webmaster and on the board of Alcor, he was diagnosed with multiple myeloma ( http://www.multiplemyeloma.org/ ) on May 7th. The treatment is chemo and then a stem cell transplant.
Jim had the line put in his chest on July 1st. He recovered very well from the surgery. On July 8th Thursday, they began introducing the chemo into the line. A small bag of the drug is put inside of a square box that delivers the drug continuously and also has a read out on it, to monitor how much is being delivered and when it is close to empty. If something wasn't working right with the device it would activate a beeping noise. This box is put inside of a nylon pouch that has a belt he can wear around his waist. From this box is a thin tube that you can see the drug (it's red) coming into the line in his chest. He wears this box device for four days out of each month, for 3 to 4 months.
The next morning on the ninth Friday, he had to begin the steroid pill, a drug that is part of this combination treatment. The steroid pill will be taken four days off and four days on continuously. On this day Jim said he felt jittery. We had been told that patients tend to feel amped up by this particular drug.
On the 10th Saturday, Jim said he had trouble sleeping the night before due to the same jitters he felt earlier in the day.
On the 11th Sunday, Jim had dominating stomach cramps, did not eat well and was very tired, spending a lot of time lying down in bed. Both he and I thought he felt hot, and I thought he looked flushed in the face, but his temperature was pretty much normal. On this night, Jim's attempt to sleep was agonizing. I usually go to bed a couple hours past Jim's bed times but right before I was ready to go to bed, he was in the living room pacing. He was getting up all night long in frustration.
Yesterday, July 12 Monday, Jim decided to take the anti nausea pill that was prescribed. Up to this point he had taken the sample anti nausea pills instead. It seems this was a good decision since his cramping was not as bad. We went to Pac Med to have the line removed. Jim took his last steroid pill of the four day round and will start it again in another four days. Removing the line was quick. Jim's original doctor, Dr.Frank is moving to another facility and had told us that Dr. Chen would be Jims new doctor. We passed Dr. Chen's office in the hallway and introduced ourselves. I asked him about Jim's problem sleeping. He said that Jim should avoid taking naps through out the day, so that he is very tired when it is time to go to bed. Jim ate better this day, although he said the food didn't taste as good that it was sort of metallic. This was also a common reaction mentioned in our list of side effects. We really focused on Jim not taking a nap per Dr. Chen's suggestion. Jim spent a nice chunk of time at the computer! Last night Jim took longer than usual to go to sleep. But while I was in the living room, I heard snoring!
Jim slept last night and this morning (July 13 Tuesday) said he woke up feeling rested. He said this rested sensation sort of wore off after he did a few of his daily routines. Since he felt the jitters previously I had suggested that he skip his coffee, so he might be missing his usual morning alertness partially due to the lack of caffeine he is used to. He took his first shower today, he didn't want to take one while the tubing was attached, not only because the attached box is cumbersome but to avoid any wetness and pulling on the tubes. They had told us that he needs to use baby shampoo with a soft cloth or brush. I'm not sure if this is to protect his hair or his scalp, since he is to avoid nicks (to avoid nicks he is also not to floss, or use a straight shaver). He needed a little nudging, "that won't help my dandruff" he says. His head could be snowing and it would be alright, as long as he is okay! He of course understood and used the shampoo. It's an adjustment to have to make so many changes in ones daily routine. He said he felt weak after the shower. We took the bandage off of his chest. He is now back in the office trying to figure out some of the insurance stuff. The Zometa infusion (which is to protect his bones which this disease targets) apparently is not covered by the insurance company and is rather large bill so we will need to pay it and then try to appeal it. There are office visit bills to be paid as well.
So now we are up to this very moment in time. Thank you all for your support I will keep you informed.
Warm Regards, Gina
Gina "Nanogirl" Miller
Foresight Senior Associate http://www.foresight.org
Nanotechnology Advisor Extropy Institute http://www.extropy.org
Tech-Aid Advisor http://www.tech-aid.info/t/all-about.html
Email: nanogirl at halcyon.com
"Nanotechnology: Solutions for the future."
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