This word I like... We architect our life...
A song, a sigh... developing words that linger...
Through fields of green, through open eyes... It's for us to see.
Interanimate: To animate or inspire mutually

Friday, August 29, 2008

Day +233 Eight Months All is Well

Yesterday's appointment with Dr. Andrey happily produced no surprises. He has given me the go-ahead to mingle with people in normal environments. Doctors are pretty conservative with their assessments, so his directions are significant. Now I can feel safe going to a movie, working in an office, eating at a restaurant!
It's kinda weird doing this well for so long. I've actually felt pretty well both physically and mentally for several months. It's been the danger of opportunistic infections, as gauged by the doctor, that has kept me home. He says my immune system is like a baby's immune system, except that babies start out with a jump start from their mother's immune system. It takes plenty of time and training for a new immune system to be ready for serious battle with everyday pathogens.
My iron levels are slowly going down due to the phlebotomies. My dry eye and mouth problems seem to be going away. My WBC is 3.9, Hgb is 14.1, Plat is 232. My metabolic panel shows that the elevated liver enzyme counts associated with liver stress are going down. The counts have been slightly above normal, probably because of the iron overload.
Thanx to Steve my new stem cells are operating like all of yours, cranking out red, white and blue cells as needed. (I'm calling platelet cells 'blue' cuz it's an election year). Thanx everyone!

Monday, August 25, 2008

Day +229 Hero of the Year

I met and spoke to Steve on the phone for the first time yesterday. He gave me permission to link you to his story, posted on Inka's website Jun 29,

Here is Steve's story:
Show and Tell Monday...Who's Your Hero??.

Steve Evers is my hero. Please read his complete story. Thank You Inka and Steve.

Saturday, August 23, 2008

Day +227 Bridge Show, Better Half Letter

This week was interesting. Thursday I had my 6th phlebotomy, the wonderful nurses at the clinic drained another pint of iron-laden blood from my veins. Unlike the previous visit, the pencil-sized needle, (inserted after a bee sting of lidocaine), found the sweet spot. The pint was drained in only 10 minutes. The other 4 chemo chairs were empty. Two weeks ago the chairs were full. During that visit, there was a young Mexican man from Guadalajara named Carlos in the chair next to me. He and his beautiful wife chose to get treatment for his lymphoma in the U.S. where they give him a 95% chance of recovery. Really nice couple. An angel, she runs a clinic in Mexico for sick underprivileged kids. Ok, back on track this week. They did not have me on schedule for some reason, so there would have been a problem if not for the fact that the chemo room was deserted. Maybe that's why my procedure went so quickly, the nurse gave me her full attention.
Yesterday, Friday, I traveled to the hospital in the other direction, to inhale a mysterious gas out of a plastic pipe in a room well stocked with old People magazines. This event was interesting cuz this was the first time I've traveled for a gassing by myself. The concern is that the gassing leaves one a little woozy, not a good state in which to operate a motor vehicle. But I had a subsequent visit with the head transplant nurse, so any dizziness wore off during that time. The reason for the visit at the BMT (Blood and Marrow Transplant) unit, where I was incarcerated in January, was that... Cindy had a letter from my (better-half) donor! Yay!
The letter was on a single sheet of typewritten paper that she placed in my hand. We talked for a few minutes. Dr. Andrey was behind the counter with a new haircut so I complimented his hairdo. Linda, one of the many angel nurses I got to know in January, appeared out of nowhere and gave me a hug. Karen, one of the original transplant nurses, along with Cindy, stopped by to chat. It was great. I caught Dr. Andrey looking at me for a minute or two, just smiling. What's going on there is simple; his job would be dismal and depressing if he didnt get the occasional success. I've heard stories, actually from his mouth a year ago, of the very bad things that can occur when a human being is injected with someone else's stem cells. He was brave to tell me these stories, knowing that I might react by taking my transplant business elsewhere. However, being an honest man he decided to scare the shit out me. Both he and I are all smiles now.
At some point, Cindy took the donor letter out of my hand, saying she wanted to edit it a bit more. Mmmmm. After a brief absence, she returned with the sheet. It had become a copy and it had 3 word blacked out. She said she first blacked out the words on the original and then made a copy so that I would 'not be able to decipher' the words. Mmmmm.
The letter was very nice anyway. And now I know that the donor belongs to a (censored) group. He has received a state-level award from the group for his stem cell donation. He is now in the running for the same award at the national level. If he wins that award, he will have to travel to (censored city) in (censored state) to receive it. Mmmmm, and Wow! He also indicated that he is having difficulty with the notoriety because he felt he was "just doing the right thing" by being a stem cell donor. More things that I learned are that Mr. donor has a grown daughter, he is divorced and he is getting a promotion at work.
Well, to all this I say: His daughter is the luckiest daughter on earth, his ex wife must be crazy, and he should be made president of his company! What can I say? I'm his greatest fan! I'm glad he is getting the recognition he deserves with the award.

Mr. Donor, if, by some impossibility, you are reading this. I suspect you did a lot more than just drive across town to get a few shots to make this happen for me. If you were not near a donation center and had to fly somewhere far away from home and had to stay in a hotel for a week during the prep I hope you allow me to reimburse you for your expenses! Thank you Mr. donor.

And now for today's post entertainment, for your viewing pleasure, to the right of these words (you might not see this if you are reading this via Email), there is a slide show of a piece of the San Diego Trans-County trail as it winds underneath the I-15 freeway between the Mercy and Poway Rd. exits. I posted a story about this hike last month.

My Dad and I have hiked to this location several times to sit and talk on the Kara Knott memorial bench in the Kara Knott memorial park. We've decided that the other memorials located throughout the park are dedicated to other young people who were also also murder victims. Ok, so that last sentence does not qualify as entertainment. However, this is a good, beautiful, yet thoughtful hike to make if you live in the area. Maybe it's a transplant thing, but I've recently developed an appreciation for bridges, not unlike my buddy over at The Journal of a Prizefighter. Hey, I should do a photo shoot on the Coronado bay bridge!

To wrap it up, next Thursday is my next doctor's appointment. I suspect Dr. Andrey will give me the all-clear to expose myself again. Er.. I mean... to a normal life, along with it's inherent risk of contact with germs, bugs and various bacterias and nematodes. Trips to subtropical Africa are still out of the question.

Tuesday, August 5, 2008

Day +209 Iron Man to Retire, Normal Day Approaching

At last Thursday's Dr. appointment there were no surprises. Everything is near-perfect with my stem cell transplant recovery. The dry eyes, mouth and low sweat problems are lingering; no better, no worse. The Dr. still has me on the same Tacrolimus dose of 2Mg/Day. This may be keeping the dryness from getting worse. However, it's kept me in recovery mode for 2 months longer than was possible. He thinks Sept 1 will be the time when he can reduce the Tacrolimus to a mere 1 Mg/Day. That low dose will be the signal that my new immune system is ready to handle real world situations. My 'normal' day is fast approaching; not that I've been sitting around in a bubble the last couple months. For the next couple years, I'll need to take more precautions than immune-healthy people. GVHD symptoms, I have learned, can suddenly appear at any time. My blog inspiration buddy Duane over at has seen an increase in skin problems on day +339. Recently he's contracted some kind of intestinal bug. I am very thankful not to have had these kind of problems so far.
I've had 4 phlebotomys. The Dr. thought my hemoglobin was coming down a little too fast (13.0) so he has spaced the phlebotomys out to a 1 pint every 2 weeks for the time being. My Ferritin (iron) level has been reduced to around 2450 from 3200 prior to the phlebotomys. The normal range tops out at around 400. Elimination of another 12 pints of blood (with it's extra iron) will get that number down. This morning I had to inhale my tri-weekly dose of the antibiotic Pentamidine. I might have 2 of these treatments to go before my immune system can be trusted with my health again. Meanwhile I have to keep up on ordering my remaining 3 prescriptions.
Thank you for all your support!