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Saturday, February 9, 2008

Day +30 Phase 1 complete

The fun never stops.
First of all it's Feb 9 not Feb 8 at the time of this posting but I wanted to post on day 30 cuz it is an important statistical milestone. Making it to day 30 is kinda like reaching an important way station on the way to the the top of Mt. Everest. Unlike an Everest climb, there is no option of turning back. So, horay! I'm going for the top!

This last week was interesting.

Errata: Lost my Star Patient designation.
On last Monday's appointment my blood counts showed similarities to my counts 5 days Wednesday previous, maybe slighty better. The blood test in-between Wed and Mon, on Friday the 1st, showed 'incredible' improvement from the Wed tests. My last post talked about the great Feb 1st results. The doctor called me his star patient. So on Monday after viewing the newest test results the doctor informs me that the Friday blood test must be 'in error'. But, not to worry, my current blood counts were still very good. I guess I officially lose my 'star patient' designation now and go back to just a good patient. I wonder how a blood test can be in error? The numbers were not unreasonable enough on Friday to be challenged by the doctors. It's ok.


GVHD or stupidity?
I was due to see the doctor again last Thurs, Feb 7. However, on Tues morning, I noticed a burning feeling on the bottom of my right foot. Visually there appeared to be a few rashes in the areas located on the thickest skin part of my foot. I was wondering if this was a GVHD symptom cuz the docs always check my feet for rashes, so I phone in and they had me come in Wed morn. The diagnosis was that the rash was caused by yours truly taking a .6 mile walk Monday afternoon around the neighborhood... in his bedroom slippers with no socks. It was thus a 'local irritation' and not the a symtom of GVHD. Whew! What fun! Obviously I am now aware of how sensitive my skin is and have been wearing xtraining shoes with sox.

"Marrow Checked"
This is just one of those subtle things that are said sometimes by doctors that can show how removed they can be from their patients sensitivities. It's no big deal but I brought it to his attention at the time in a joking way. On Monday during the doctor's typical brief visit to my room to discuss the blood test, look for rashes, listen to my lungs and generally poke around, he spoke to the nurse about future plans. He said that I was due to have my "marrow checked" at 30 days and that it should be scheduled on Thursday. As soon as he said that I piped up and said something like, "oh, is that where a doctor uses a needle the size of Norway and a cork screw to bore into the bone to collect marrow?" Without a pause he replied, "sort of, but we are still 'checking' the marrow." The implication was that 'checking the marrow' was an accurate description of the procedure. Very true, I agreed. I was just acting up. I've had 4 of these procedures now so I asked him to forgive my sensitivity to a casual mention of the procedure. There probably is no good way a doctor can tell you that you need to lay down through another painful 15 minute procedure. Thats all it is to me. It is still hard to sit because of the residual pain in my tail bone. I wonder if they try to reuse the hole from the previous procedure? After the biopsy, which lasts only 15 minutes amid much pillow clutching and gnashing of teeth (on my part), I treated myself to a surrealistic scene by observing the lab techs sorting through my marrow for the best pieces to put onto each of 10 slides they had to prepare. "Oh, now there is a nice juicy chunk", I would think to myself.
Aight, nuf of dat. The reason for a bmb at this point is so the doctors can actually get a ratio of donor stem cells versus my old stem cells in the marrow. They would like to see 100% donor stem cells and 0% my cells of course. I will get more biopsies in the future, next one close to day 100.

General update
I'm still progressing well. No signs yet of GVHD in any of it's usual incarnations. Appetite is good but nothing really tastes good. If I could just smell the food I'd be happy cuz my olfactory senses are as good or better than before chemo. As soon as the food gets to the tongue it like a "what the heck is this" signal goes to the brain. Smell and tastes are not in sync, brain is confused. They say you get back tastes after a few months. Drinking lots of water per directions, gotta keep flushing the the tummy organs. I'm sleeping better. I'm trying to take half mile walks at least once per day. Some energy is kind of returning. I can turn on the computer and look at all the icons and words without it seeming like an enormous task to comprehend.
Family is terrific. Dad stays with me Mon-Wed and Cathie takes over Thu-Fri driving me to appointments, shopping for me, reminding me about pill times. Cathie is always cleaning and wiping surfaces to reduce microbes and fungi. I'm like bubble boy without the bubble. I still get lots of inspiration from all of you too, so thank you!

8 comments:

Anonymous said...

Awesome. Great news!!! It is definetly a milestone in your life and its a reason to celebrate. Cheers!
June

Mike B said...

Jim

It was good to see your post and hear the great news. Congratulations on your successful Phase 1!
Glad to hear you are making it out and about a bit and your results are looking so good.
We're pulling for you.

Mike B

Pat H said...

Jim,

So glad things are going well & to me you are still the"star" patient!

Pat H

Anonymous said...

Jim,
So glad to hear you are making great strides. I pray for you when I think about you and the family-which is often. Miss you guys!
Caryn Clarke from Maryland

Anonymous said...

ROCK ON... sounds like you are doing great! This is huge! Sorry about your bmb, that does not sound like fun, but if the results are good, then its worth it...right? Keep staying strong and getting better, oh and keep eating, you can hang out with me sometime soon, you know how I love to eat!
LOVE YA LOTS
Shell

Duane said...

Jim, your da man!

SoftwareEngineer said...

This sounds like a marathon. And if it is, it sounds like you've got your second wind! The new energy, the exercise, the mental improvements, all sound very encouraging.

We're on your side. We're praying for you.

William

Todd said...

Jim

Before u know it you'll be passing up the neighborhood dog-lady on your walks. Just remember to wear the sox next time. We forgive you. Congrats on day 30! You have an amazing family pulling for you. You are a inspiration to them and to all of us! Keep on rollin'!

Todd