Day +277 No Highs or Lows, ALTBUN CLAST KALB, Gulp

Referring to one of my two blood test on Sept 24, there are no highs and no lows!
For the first time in almost 3 years, all CMP numbers are in the normal range! The test is called a 'comprehensive metabolic panel' or CMP. It reveals whether some organs are under stress, functioning properly. Typical components of the test are abbreviated BUN, ALT, AST and the like.
Dr. Andrey was so happy with the results he reduced my prescribed meds down to 2 from 4. That is now only 1 gulp per night for me. I'm now down to the lowest dose of Tacrolimus possible. This is further confirmation that my immune system has been trained enough to allow a resumption of normal activities outside the home.
This appointment was different than others for more reasons. First of all the Rancho Bernardo Scripps Clinic moved to a brand spanking new building across the street. The prior location of the oncology unit was in the basement of the old building. It was dark, small, and kind of cluttered. The new onco unit is on the 2nd floor of the 5 story building across from Costco. The unit is graced with large windows on 2 sides. It is bright, cheerful, and large. Parking, which was always a problem across the street, is now a breeze due to the 4 story parking structure. Before Dr. Andrey entered my examination room Thursday, I was reading my blood report and getting choked up. A quick scan of the report column between the component values and the normal ranges came up... blank! This is the column that, over the last 3 years, has frequently displayed 1 of 2 single letters, an H or an L. Some of my letters were normally H, for 'high'. Over the last few months, as my kidney and liver functions have been recovering, the level of enzymes indicative of organ stress, have steadily dropped. Now they are normal. As a consequence of my good numbers, Dr. Andrey, for the first time, did not do the usual poking around in my mouth and belly looking for various inflammations. It's been a long road. I feel a debt of gratitude to everyone who has enabled my arrival at this milestone.
Of course, the great doctors, nurses were instrumental for their medical skills. Deserving credit are all the patients who have walked this road previously and provided the data needed to fine tune the transplant process. Many did not make it to my point, but their experiences have been analyzed and all the lessons learned from past failures have been put to good use in giving others a better chance. The stem cell transplant treatment is still considered a clinical trial. On the papers I signed last year, my 'lead investigator' was Dr. Andrey. In January, I voluntarily participated in a clinical trial for a post-transplant drug. That drug, Maribavir, may become part of the normal protocol for post-transplant treatments. It worked well for me although I still dont know if I got the placebo.
I applied and was selected to participate in a study being conducted by the Mt. Sinai School of Medicine, 'Sharing our Strength, Life's Journey After Transplant'. This is a study that, I think, will attempt to quantitatively link transplant success with psychological factors. The study will also test treatment methods devised to increase transplant success rates. After the first couple phone interviews, my role in the study will be in the form of 4 writing exercises over a 1 month period. I'm not exactly an impartial study participant. I feel that my recovery success, to date, has largely been a result of the support from my family, including all of you, my blog family and friends. A particularly sensitive time for me was the first 4 weeks of the process. Your support was overwhelming and made *the* difference. My chemo brain was playing strange tricks and it was all of you who pulled me back from the abyss.

Day +245 A Question of Passion

A father once said, "Son, you have tried for many years to become a successful actor but had no luck. You continue to live hand to mouth and your health suffers. Maybe it's time you look for other types of employment." The son replied, "Dad I love acting. I'll never give it up."

A wife once said, "Husband, you have been in several bicycle accidents and had many broken bones. Maybe you should give up this hobby for your own good." The husband replied, "Dear wife, I love riding my bicycle. I can never give it up".

A friend once said, "My best friend, you have had a serious accident on your motorcycle in which you lost control; but you survived with only cuts and bruises. Maybe motorcycle riding is not a good match for your personality." The man replied, "Dear friend, I love riding my bike. I will never give it up."

A stranger once said to another, "Stranger, I saw you hyperventilating just now to the extent that you passed out. Maybe you should give up breathing." The other replied, "Kind stranger, thank you for your concern. But I love breathing. I will never give it up."

for Trevor White - 1987-2008 - A Man of Great Passion

Day +240 A Friend Lost

I am physically well today, not so much mentally. Today, a very special young friend has been lost to a motorcycle accident a couple miles from my home. Trevor White passed away at the scene of the accident. We think he was on his way to work. Trevor was very young and leaves many hearts broken and missing him already. All of us Andersons have known Trevor for the last 13 years as his mother and Cathie became good friends through their connection at a preschool where Trevor's brother Cody and my son Dylan were classmates. We are all very sad for Trevor's mother Anne, father Steve, and brothers Cody and Weston. It is such a shock for the heart to realize that this wonderful and vibrant young man will no longer be with us. God bless his young soul and help comfort his family. He was loved by many.
News story.

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!

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, inklingsdesigns.com.

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.

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.

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 thejournalofaprizefighter.com 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!
Jim