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

Day +177 Independence, Birthday, Overreacting

Happy Independence day! I hope everyone had a great day!

I wanted to let you know that yesterday was Dylan's 18th birthday. We have a new man in the house. We did whatever he wanted, which was to see a movie, eat out, and open presents with his family. Next weekend we will have a back yard party for him with his friends. Dylan is rapidly approaching 6 feet in height. His shoe size is bigger than mine and he has more hair on his legs than me. I still have him beat in hat size though! He is a senior in high school this year and has a real positive attitude about learning and education. He has been a wonderful help and inspiration to me this year. Good kid!

Yesterday I was happy to be able to report actual medical data on my progress. Going a month between doctor visits means that, if I am to post more than once a month, I have to write about the more subjective aspects of my recovery. One day I may collect enough of my thoughts to write something coherent about my 'mental' journey covering the past 6 months. Some of you have asked about this. However, I know such a post will be a great opportunity for me to ramble so I'm putting it off until I can compress into something of reasonable content and size.

Regarding 'overreacting', since yesterday I have been trying to find the right analogy for explaining the overreaction of a new immune system to a minor injury like a sunburn. So here it is. Imagine a convoy of heavily armed Blackwater contractors traveling through a busy marketplace in Sadr City and a firecracker goes off next to one of their vehicles... Yikes! I'll be staying in the shade!

Day +176 Good Numbers, Phlebotomy

All my blood line counts are up from last month! See the blog page. Even my white cell counts are up a tenth. At today's appointment Dr. Andrey said the whites always come up slower because T-cells have to get 'educated' by the lymphatic system, Lymphatic U., so to speak. Dr. Andrey was very positive about my progress. He did say, for the first time, that he thinks I am definitely experiencing some minor, chronic, GVHD symptoms. These are: dry eyes, dry mouth, some facial rash, and some skin itching (without rashes). This means he wants to keep me on Tacrolimus for the time being. Supposedly, if I were not taking Tacrolimus, these GVHD symptoms would be more pronounced. These kind of symptoms generally disappear as the new immune system becomes accustomed to it's new surroundings. So I am to drink lots of fluids, use the 'Tears II' solution in my eyes from time to time, and occasionally employ the bamboo back scratcher that I obtained in a tropical drink years ago in Waikiki. The GVHD symptoms are very minor so I feel very lucky. However, even light symptoms are considered a problem because it does not take much to cause the new immune system to overreact in unpredictable ways. That is the reason SCT patients are told to stay out of the sun. A common sunburn can cause the new immune system to go bonkers, to start mistaking good skin cells for alien invaders. It's kind of a a tight rope for the first year after a SCT. The new immune system is kept mellow by the Tacrolimus and eventually learns to discern friends from foes on it's own.
My Ferritin level tested out at 3132 ng/mL. Normal range is 10 to 291. All those blood transfusions the last 2 years loaded up my system with iron (Fe). The body has no way of getting rid of iron once it enters the vascular system. The excess iron gets stored in places where it doesnt belong, eventually damaging organs. With my newly functioning red blood cell system able to make lots of blood now, the way they get rid of excess iron is to perform a phlebotomy, not to be confused with 'lobotomy' where they snip the connection between the prefrontal cortex and the rest of the brain. In the phlebotomy procedure a nurse inserts a needle into a vein in your arm and drains a quantity of blood. Starting today I will have this done weekly for around 16 weeks. Each pint of blood removed will eliminate 1/4 gram of iron. The blood, of course, is useless and cannot be donated. It is thrown away. How strange. I went from needing blood for 2 years to now needing to get rid of it. In 16 weeks I should lose around 4 grams of iron, bringing my Ferritin level down to normal. The 1 pint drained each week represents only about 6% of my circulating blood, so I will only feel slightly fatigued during the period. Not to worry, I am used to feeling much more fatigued because of the chronic anemia I experienced for more than 2 years.
With all your help and support I will continue to try to beat the odds and stick around a while longer! Thank You!

Day +172 Hiking to Cara, Bachin It

I had a good week except for one major problem. My family was gone. They boarded the germ factory called a Boeing 737 and flew off on their annual vacation to Cathie's home town, Lake Mills, WI. They return tonight.
Dad and I hung out and were able to find a new trail to hike every day of the week. We found some great ones. At this point we are trying to walk different segments of some of the same trails we discovered previously. Maybe I'll write a book, "The Hikes of Ranchos Penasquitos". It really is amazing how many trail hikes exist in this area. San Diego's 'Trans County Trail' provides some great jaunts. One of our best discoveries last week was the TCT trail portion between Black Mountain Road and I15. This turns out to be a very nicely shaded trail in the canyon with a running stream. We ran across some kids fishing in the stream. If you park at Canyonside, the round trip hike to I15 is approximately 1.5 hours. If you park at Ridgewood Park you can cut the trip in half. When you round a certain turn in the canyon, the 100 yard wide, massive I15 bridge between Mercy and RPQ Blvd suddenly appears in the west sky overhead like something out of a science fiction movie. Next to the I15 bridge is the old I395 bridge, rising out of the canyon to only half the height of it's replacement. As you walk under the 100ft high bridge, the sounds of traffic drown out the sounds of the Phoebees and finches chattering in the steam-side trees. You can't see the traffic, even from a distance. However we saw a lone yellow grading tractor sitting on the west edge of the southbound lanes. It was parked directly over one of the 100ft high columns. Caltrans is in the process of widening the freeway at this point and down to the south. On the East side of I15 you are still in the canyon. There is a single lane, mostly unused, road leading North-South to a waste water treatment plant that is visible in the canyon below to the Northbound I15 travelers. The road, Cara Way, is special. Dad and I first became award of this due to the fact that the road had numerous retaining walls on either side that were decorated in reliefs by a local artist. The designs were a celebration of the Kumeya’ay Indians. I could tell that great expense went into designing these retaining walls on a road that I thought just led to a treatment plant. We walked a hundred yards down the oak and willow tree lined road toward the treatment plant. Just outside the locked gates of the plant we discovered the reason for the fancy retaining walls. This was the location of the Cara Knott memorial park. Cara was 20 years old when she was killed by a California Highway Patrol officer in 1986. The park is a volunteer-maintained clearing with planted baby oak trees. Many trees are ringed with memorial rocks and artifacts for other young people who passed-on too early in life. Someone constructed a beautiful wooden gazebo in the South end of the 1 acre park. Walking around and reading the various inscribed memorial objects was a time to reflect upon how tragedy can strike so unexpectedly.

Day +172 Eternal Vigilance One Can Only Hope For?

Last Sunday my Dad and I attended a seminar/celebration at Scripps. It was the 21st Annual National Cancer Survivors Day. The event was held in a nice sized amphitheater at Scripps Green hospital. It was attended by over 300 people, including 3 speakers, a musical entertainer and the San Diego Union newspaper. This wasn't so much of a 'support' gathering as it was a celebration for cancer survivors. 2 of the 3 speakers were cancer survivors, the other was my doctor, Jeffrey Andrey. I want to write about Dr. Andreys presentation and mention that the musical entertainment was really good. The lone performer was Steve White. He played blues guitar, harmonica, vocals and foot drums. Everyone was stomping their feet to the music. He was very good.
Dr. Andrey's presentation was very interesting to me in terms of understanding cancer. His topic was the increasing use of SCT (stem cell transplantation) for the treatment of tumorous cancers. I've always thought of SCT for the treatment of bone marrow cancers, which are non-tumorous. A traditional SCT is meant to replace defective marrow stem cells with a donor's good marrow stem cells. With the new tumorous SCT therapy, there is presumably nothing wrong with the patients marrow stem cells. Instead, tumors elsewhere in the body are the target. How could this be?
The answer may be surprising. Replacing bad stem cells with good ones make sense, but this cannot be done without the necessary side effect of a cold 'reboot' of the entire immune system. For people with bad stem cells, they would love to not have a cold reboot. The results of an immune system reboot is unpredictable. What will the new immune system attack? The liver? The heart? The lungs? Nothing? Most people, like me, are extremely happy if the new immune system attack nothing except for invading pathogens, bugs, and other usual suspects. For SCTs done to tumorous cancer patients whose stem cells were fine to start with, they *want* their new immune system to function better than their old immune system. In other words, they want an immune system transplant. Why?
This is the intriguing part. A cancer patient's old immune system somehow became lazy. Their immune system allowed itself to be duped by line of cells that were 'not right'. In other words, the tumorous cancer cells established themselves in their body and their immune system allowed it to happen. This is how cancer gets established. Errant cells, randomly created by faulty cell divisions, are supposed to be detected and killed by the immune system. Cancer is an immune system failure. With traditional SCT's like mine, some Graft Vs. Host (GVH) reaction is expected. It is expected that the new immune system may target good organs by mistake. But the immune system may target cancer tumors just as well! They call this side effect Graft vs. Tumor (GVT). It is hoped that the new immune system will not find fault with healthy, desired, organs; but it *will* find fault with any tumor cells it finds. Dr. Andrey produced slides during his presentation that demonstrated lung tumors clearing out in one SCT survivor. This is an important frontier in cancer research. But how can we direct a (new) immune system to attack only things we want it to attack?
Eternal vigilance. One thing I've come to realize from all this is that our immune systems are the key to a healthy, cancer free, disease free life. What is it that causes an immune system to give a free pass to a new line of mal-organized cells? What happens early on when there are only a few malignant cells? Why does the immune system let down it's guard? How does it get duped? The immune system must remain eternally vigilant. Is this something we can only hope for or are there things we can do to help?

God bless!

Day +162 News From My Other Half

Today was not going to be a post day even though I had 2 appointments at the hospital. But now that I'm back I have something. One appointment was for a blood draw, a residual from the Maribavir clinical trial study I was on until April. Not much excitement there. The other was my 3 week gassing with Pentamadine. This is where I suck an antibiotic gas under a hood for 10 minutes while I read a 6 month old issue of People Magazine. Not much excitement there.
The real treat was getting a letter from my donor. Mr. 'D' sent me, through the numerous editing channels of course, a nice letter on regular paper. This was exciting to me. I'm going to reproduce it below cuz it's not really personal and I want you to see how Mr. D's life has been affected as a donor. I'm sure he won't mind me posting this.

But before typing in the letter I want to say that I am doing great. My Dad and I have been finding many hidden trails within 5 miles of my house for our hiking excursions. The area is literally riddled with canyons sporting old trails and roads. The wild thistle artichokes are blooming a bright purple. The plant looks like an regular artichoke on steroids. Rabbits scurry everywhere as we approach and birds drunkenly fly about after munching on the ripe red monkey berries. It's getting hot so we plan our trips for 6:30pm when the ocean breeze starts pushing the sea mist back up the gentle marine terraced slopes.
My next doctors appt is July 3. He will be advising me on whether he thinks I can resume mingling with other people in offices and other gathering places. Believe me, I'm missed many gatherings that I wished I hadn't. The fact is, we are a pretty healthy society what with all the vaccinations we received as kids. So now I, who have lost all my immunities, get to take advantage of all of your good health, which is attributable to your childhood-engineered vaccines. I can catch colds and the flu, but all the really nasty stuff is pretty rare these days due to the childhood vaccination program. I'll start re-taking the vaccinations in around 6 months.

Without further adieu, meet my donor, Mr. 'D':


Dear Recipient,

Have received your letters and I am so glad that the donation was a success. It has been a unique and rewarding experience for me. I never thought that I would get called to donate. When I was contacted in 2006 I had forgotten that I had signed up. Through talking with my coordinator I found that I had enrolled in the program in 1992 - many years and quite a few moves ago. How they tracked me down I am not sure. The coordinator told me that that was the longest span between sign up and donation that they had seen. It was obviously meant to be.

Many of my coworkers have given me so much support when they heard I was in line to donate. They had many questions. Since I have returned from the donation I know of one person that has signed up to be a donor. My employer is a big advocate for the program and is going to have a sign up drive in a few months. I have been asked to speak of my experiences during the whole procedure. They were surprised to see me back to work at full steam the day after the donation. A lot of people thought of the old procedure where the marrow had to come from the hip. (I would have done that if needed.)

As far as all of the medical terminology, I am not very well versed. Science was not my strong point in school.

I am happy to hear that you are progressing and I also look forward to the day we can exchange information. I have a 'motto' that I live by - We are all in this together. Life is hard enough and we have the choice to help each other or not.

I am not very good at the letter writing (my Mom gets onto me about it) but I will try to get better. I am using a friend's computer to write this so that it is legible. As you can tell from the card I sent that I do not have the best handwriting in the world.

Look forward to hearing from you.

Your Donor


I typed that word-for-word from Mr. D's letter, which I received from the transplant nurse today. It makes me feel great to know that Mr D's donor experience is enriching his life. I did not want to feel like his experience has not been good. Anyway, it is my intention to remind Mr. D from time to time what great things his generosity has done for my family. We will never forget his effort and hope to establish non-censored contact with him when the NBDP allows.

Day +148 Two Out of Three Aint Bad

Today was my first doctors appt since May 15.
I've been feeling pretty good the past 3 weeks. My energy continues to return. I find myself walking farther and taking on more daily projects, mindful of minimizing unnecessary contacts with crowds and airborne particles.
My father has returned to our house to stay with us for a while. He and I have returned to being walking buddies. Around 6 weeks ago, after my good 100 day checkup I released him from his co-caregiver duties and he returned home to my mom. However, even after 57 years of marriage couples can need temporary breaks. So he is a welcomed returning house guest and is keeping me honest with my daily exercise routine. He is also a great companion, enjoying a conversation about anything and is very supportive and patient.
I cant mention great companions without talking about Cathie again. She is off the scale in the companion and caregiver categories. She is actually more mindful of my health dangers than I am. Around 3 weeks ago I started developing a couple small issues and she was the first to notice one of them. I've developed a slight rash on my face, no where else. The rash is only noticeable up close and is similar to a mild case of teenage acne. The other minor issue is that my eyes seem to be drier than usual. I've experienced some dry eye issues over the past few years but this time around it is more irritating. I have to rub my eyes a lot and/or apply some 'tears' solution. Cathie convinced me to consult with the doctor about these things. It was hard for me to do this because I know that Graft Vs. Host symptoms can be much, much more pronounced, and I've never read about dry eyes and face rashes being symptoms. Well, the good doctor is not alarmed but wants to keep an eye (no pun) on the 2 things because they are sometimes an early sign of GVHD. He was going to reduce my immune-suppressant drug Tacrolimus to 1Mg from 2Mg per day, but decided against it until we see if anything develops. So maybe my 'perfect' recovery from the transplant is in doubt. Oh well. If this is the only symptom of GVHD I ever get then I'll still be extremely lucky. I've made it this far because many of you willed, wished, and prayed for it. I have to thank you all again!
My counts remain on a positive upwards trend. Now my platelets have reached a normal count. My white cells will not fully recover until I am off the Tacrolimus and Diflucan. But they remain close to normal and are not falling. My red cells remain in the normal range. Two out of three aint bad! My new stem cells continue to graft well and repopulate.
My mental outlook improves all the time. It's hard to believe that only 6 months ago I was looking down the barrel of a biological gun. Now I feel the gun has been lowered but is still lurking. I have a great hope for being around for at least a couple dozen more years! This is my fathers day present from all of you!
My next doctors visit is July 3.

Day +138 Lions, Goats & Snakes

Last week I received results from the final study of my last bone marrow biopsy. The results are detailed in a Chimerism Report. The Chimerism study was, I presume, named by researchers and not practicing doctors. Doctors that deal with patients really dont like to answer the question "Why is the report called Chimerism?" First of all, there is some rule in medicine that diseases, conditions, and body parts be given greek names. As it happens, the Chimerism study is named after a "monstrous creature" in Greek Mythology named "Chimera". Here is a picture of the 2 headed cutie. Chimera is the lesser known sibling of the well heeled three headed dog that guards Hell, Cerberus. Apparently Cerberus was the more successful of the siblings since he had an actual job. Chimera is described in the Iliad as, "a thing of immortal make, not human, lion-fronted and snake behind, a goat in the middle, and snorting out the breath of the terrible flame of bright fire". Chimera was unemployed and she was literally associated with bad news. A sighting of Chimera was an omen of storms, shipwrecks, and natural disasters.
Back to the Chimerism report. The Chimer would be me. The purpose of the study is to quantify what percentage of my living stem cells can be traced to the new donor and what percentage can be traced to my 'original' stem cells. Since my original stem cells were well on their way to taking an early unauthorized retirement we made a valiant effort to evict all of them. We then introduced a batch of new donor supplied stem cells that hopefully do not want to retire early. Therefore, the Chimerism study seeks to discover whether the old stem cells are trying to sneak back into the bone marrow. We hope this does not happen. And, so far, so good!

The report reads:
Mean percent Recipient, %: 0
Mean percent Donor, %: 100

On a final note, if I have to be a Chimer I'd like to think that the Lion part of me is from the donor and the Goat part is from my old self. The snake? Well, I know I still have that and it's still very much alive. Ha ha.

Day +127 Reds Normal, Blessings Rule

Hallelujah!
The ones that started all the trouble for me, my Red Blood Cells, are back to normal levels!

A recap.
Normal Hemoglobin is 14 to 18 g/Dl. Jan 26, 2006 I was feeling very weak, went to see my doctor, and learned I had a reading of 6.1 g/Dl. Hemoglobin carries oxygen throughout the body, so I was constantly out of breath. Stem cells in my bone marrow were honked up, and were quickly forgetting how to make red blood cells. Turns out my white blood cells and platelets were low too. I was given a 50% chance of surviving 4 years. The only possible cure was this thing called a stem cell transplant, which itself offers only 50:50 odds of surviving just to the first year. Well, 28 months, a wonderful stem cell donor, and a stem cell transplant later, my Hemoglobin level was measured today at 14.2 g/Dl.

Cathie attended today's appointment with Dr. Andrey. Needless to say we were both elated at the blood test results. Doctor Andrey was in a jovial mood again, cheerful, optimistic. Up until last April I thought he was a serious, no nonsense doctor, all business kind of guy. Now I have to wonder whether his demeanor during that time was closely tied to my prognosis. When I reached the day +100 milestone in april, Dr. Andrey turned a corner along with my prognosis. In words in went from 'Not Good' to 'Favorable'. My 50:50 odds of surviving the first year are probably closer to 85:10 and after that I get about a 90% chance of living to a normal life expectancy. My Achilles heal will be my higher-than-normal risk of contracting opportunistic infections.

Well, this blog has been difficult at times cuz I normally do not like talking about myself. Writing about myself is only marginally easier. While writing I can convince myself that no one reads it anyway. However, my health is the topic of this blog so I figure I'm just staying on topic. I know I've strayed off-topic a little bit at times. That was done for the sake of my 'mental' health. It could have been worse, far worse. I could have opined about any number of controversial subjects. Going that far off topic would not have been cool.

As you can imagine, this has been an extremely emotional time for my family. I know I'm not the first to get a disease like this and I wont be the last. I've learned something about how to hold myself during this time from some of you who have given us so much support over the last months. I personally know 4 families just on our street who have had life threatening cancers. One woman, at least 10 years younger than me, had breast cancer a few years ago, and now has Leukemia. When you get the Leukemia diagnosis you dont have two years to figure out what to do, you have weeks. I had 2 years to live with my Myelodysplasia, plenty of time to plan, financially and emotionally. I was lucky. Sometimes life throws you a curve ball but then the next pitch is a fastball right up the middle that you can handle. Mmmm. It is baseball season so I was allowed that. I just want to acknowledge that, while I was unlucky to get a bone marrow disease, I have to be thankful that it was the indolent type. That is, it was pain free and slow acting. I had time to react, to adjust. Blessings in life are all over and can be found. I dont think it's naive to recognize them. And I dont think it's wise to belittle them.

Thank you to everyone who has registered with the NMDP and/or surfs the web using goodsearch.com with the National Marrow Donor Program as their selected charity. And thanx again for all your wonderful support for my family over the last few months! You are making me a better man.

Day +125 Surfing to Save a Life?

All good here. Next doctors appt is Thursday at the clinic. I cant wait to see what levels my blood counts have reached since my last blood test 16 days ago. The hole in my chest where the Groshong was removed is healing nicely. I just keep a bandaid on it now. My finger nails are thickening up nicely again. There is a noticeable dip in nail thickness in the middle of each nail. The stem cells that create the nail-growing cells in my fingers took a moderate hit during chemo in January resulting in a short period of thinner than normal nail growth. Fascinating, this stem cell stuff.

Ok. The real reason for this post...
There is a way to fund more NMDP registrations where all you do is do your normal internet surfing! Instead of using google as your search engine you use a website that uses the Yahoo! search engine. Yahoo! is probably just as good as Google for finding what you want. Whenever you perform a search, the charity of your choice gets a penny! Isnt that awesome! You can check the amount raised for the charity whenever you like. You dont have to click on any Ads in the search result page. Just by performing a search, your charity gets a penny! Not a lot of people use this search engine yet so the numbers are small, only $132 raised for the NMDP since Jan 1. However, that amount pays for almost 3 donor HLA typing tests at the NMDP. If more people used the search engine that number would skyrocket!

The search engine is GoodSearch.com. Go there, input 'national marrow' into the charity identification field and press enter. This will position your charity to the NMDP. Now, whenever you perform a search from that page, the NMDP will get a penny. There is no invasion of privacy, no registration, no user ID, etc... All you need to do is make goodsearch.com your default search engine. Also check out their newest feature, GoodShop.com. Using GoodShop.com you can shop online at many retailers and a portion of anything you purchase goes to the NMDP.

These 2 websites offer a way you can get money to your favorite charity by simply surfing the internet!

Thanx!

Day +123 Last Word on Donating

Happy Mothers Day everyone! My mom is too exhausted to come over for dinner today, but we will celebrate here anyway with our own homegrown mom, Cathie.

I just wanted to put in one more post regarding becoming a stem cell donor. The procedure really is a slam dunk with no charge until May 19. You register, they send you a tissue typing kit where you swab the inside of your cheek with a Qtip, and you send it in. The cost of doing the DNA analysis, normally $52 to you, is paid for by monetary donations by others during this time (unless you want to donate $ too).

I was lucky to find a DNA match with marrow.org when I needed a stem cell transplant. In the summer of 2006 I was not so lucky, they only had a partial match. In the summer of 2007 some guy, somewhere, decided to be a stem cell donor volunteer. I owe my life to this person. I frequently wonder what it would feel like to donate some of my extra unneeded cells to save someone's life. I can not be such a donor anymore so I'll never know for sure, but my bet is that I would feel terrific for the person and their family.

For those of you who have followed my story here I hope you have been inspired as much as you have inspired me with your comments and support. I ask you to be inspired in one more way; to become a stem cell donor, to maybe save someone's life one day. Following is my understanding of what happens if you register as a stem cell donor.

Marrow.org (NMDP), registers your HLA typing in their database. The test they do identifies only 6 of the 10 major antigens in your DNA that affects graft immune response, ie: the success or failure of a transplant. People with a handful of diseases, including Leukemia, MyeloDysplastic Syndrome, Lymphoma, Aplastic Anemia, etc... have a doctor do a search of the marrow.org database. The search usually turns up a few to a few dozen donors with the 6/10 matching. Some donors have had the more extensive HLA typing so their complete antigen profile is registered in the NMDP database. It is recognized that there must be at least a 8/10 match to proceed with a stem cell transplant, 10/10 is the best. If a 8/10+ donor is not present in the search results, the 6/10 donors are called in 3 or 4 at a time to get the full HLA typing test. This is done with a very small blood draw at your local hospital. The stem cell recipient's insurance pays for this $500-$700 test, not the donor. If your HLA typing is found to be an appropriate match and the recipient wants to proceed, this is how they get your unneeded stem cells. The doctors will schedule with the NMDP. You will be schedule immediately for a physical where they will get a blood draw to look for additional things that may complicate a stem cell transplant and to make sure you are still in good health. If you pass the health screening all is a 'go'. Approximately 6 days before the recipient is to get your stem cell donation the recipient will start to undergo 'conditioning'. This means they will get total body radiation and/or chemotherapy to knock out their own stem cells. On the same day, you will start going into your doctors office every day for a short visit where the doctor will inject a synthetic human hormone that will cause your bone marrow to start creating lots of stem cells. Normally your bone marrow stem cells get a communication to create 1 of 4 types of cell, based upon current needs; 1. stem cell, 2. Red Blood Cell, 3. White Blood Cell, or 4. Platelet cell. The synthetic hormone that is injected tells your stem cells to divide and create lots of other stem cells. Your bone marrow creates more stem cells than can occupy the bone marrow. The extra stem cells are evicted into the blood stream. After 4 or 5 quick shots over 5 days, your blood is teeming with stem cells! You dont feel any different! On day minus 1 for the recipient, you will visit your hospital and sit in a comfortable recliner. The nurses place an IV in your wrist or arm. They draw blood out of your arm for 3-4 hours while you read a book,magazine or watch TV. There is no pain. The blood is routed through a machine that filters out the stem cells and is returned back into your donors body. There are no side effects, you only lose extra, unneeded stem cells. Some of you may remember the hearing about the old days of 'bone marrow' transplants. Those procedures were much more invasive and entailed the use of big needles on sedated donors. Stem cell transplants today are as described and only slightly more invasive than just giving blood. All costs are borne by the recipients insurance. Your harvested stem cells are transported overnight to the hospital where your stem-cell-free recipient is now feeling like a sack of moldy tomatoes. The next day as the nurses transfuse your cells into the recipient he/she and his/her family cry with joy and relief. This is called Day Zero for the recipient.

Can donors register for the NMDP database and change their mind if selected? Yes. They prefer you don't back out, but there is no contract to prevent you from doing so.

The decision to register as a NMDP stem cell donor is very personal. Please compare the amount of discomfort you may experience (based upon my hopefully accurate description), with the comfort and joy you may experience in saving a life. Please consider becoming a donor. And please communicate to everyone you know about this unique opportunity to register with the NMDP at no cost. Feel free to send them a link to this post to explain the process.
Link: http://interanimate.blogspot.com/2008/05/day-123-last-word-on-donating.html

Day +120 Dangle Danger, Please be a Donor Volunteer

120 days. Seems like a nice even number. 120 divided by 30 = 4. Four months tomorrow since getting new stem cells transfused into me from my Groshong central line catheter. Man, that catheter saw a lot of action. Unfortunately, it's usefulness has now become very limited. After a search of eBay I could not find a device that could connect a bottle of beer to the catheter cap, enabling a beer transfusion. Hee haw! Truth is, since I received permission to drink 24 oz per week from my doctor a few weeks ago, I've only consumed 1 beer. The one beer kinda wiped me out, had to take a nap. My abstinence will probably continue. Maybe this is a good time to officially quit my 6 bottle-a-week habit? It wasnt much, and I'm sure a study will come out some day proving how a beer a day is great for the heart. But, I've got other things to worry about now.

Yesterday my Groshong catheter was removed. The removal procedure is much less complicated than the installation. Contrast an hour in the operating room on the table with several specialist doctors cutting into large veins while you are zonked out by a demerol-valium drip; to a small closet-sized room where a single physician-assistant with a simple catheter removal kit and a few ccs of lidocaine yanks out the line. I asked the PA how she could pull a 1/8 diameter line around a 160 degree turn out of a jugular vein; without getting a free crimson spray paint job. She really ddidnt have to explain though. It's obvious they've done this a million times and the procedure works, otherwise they'd have a bigger room and more people involved. So I got the lidocaine pricks, numbing the area on my chest around the catheters exit point. The PA said I'd feel some pressure or pulling. The pulling lasted only 15 seconds. I kept my eyes closed. Just after the pulling started the thought went briefly through my mind, "ok. stop! you know, lets just leave the thing in there, I'll just deal with it!". A crazy impulse for sure. But then I heard her say "It's out!". I looked over at her. Dangling from her rubber-gloved hand, glistening in the florescent light, still warm and silent; it hung. My entire Groshong, not just the above ground part. A scene from the movie 'Alien' crossed my mind. Without further adieu the PA threw the face sucker in the toxic waste receptacle that hung on the wall. Why did I ask her if I could keep the thing? I did that. Kinda crazy. I could have made a mobile out of it. In a couple days I'll be able to take a dip in the pool again.

Please help by being a stem cell donor.
From now thru May 20 you can become a registered stem cell donor by registering at marrow.org. This is kind of a unique opportunity. I've been saving my 'become a donor' spiel for the right time. It is now the right time because it is free! You see, normally it would cost you $52 to register to become a donor since that covers the cost of your HLA typing. Until May 20 it is free because the NMDP is doing a Mothers-day drive. Donating your blood may help save a life. But donating your stem cells is almost sure to save a life if your cells are used. The stem cell harvesting procedure is very non-invasive. Read about it at marrow.org. Following is some info I've cut and pasted from marrow.org. Thank You!

Did you know:
- Every day, more than 6,000 people search the National Marrow Donor Program® (NMDP) Registry for a life-saving donor.
- Only 3 in 10 patients get the transplant that could save their lives.
- Seventy percent of patients will not find a match in their family.

You can change that!

From May 5 to May 19, the Thanks Mom awareness and recruitment campaign of the NMDP has an ambitious goal: to add 46,000 new members to the Registry of marrow donors and raise $100,000.
I encourage you to join me in making the Thanks Mom campaign a success. What better way to say "Thanks, Mom" for giving you the gift of life than to share that gift with another.

Please Click here to register!

Day +115 Counts Up, Groshong To Go

In the last 9 days I have good progress to report.

At Tuesday's appointment, my doctor said I could cut my immune suppressant drug Tacrolimus in half, to 2 Mg per day. I'm now down to 25% of what I was taking at day +28. The dr. is now scheduling appointments at 2 week intervals. So I went from biweekly to semiweekly appointments in the span of a couple weeks.

Oxygen Up
My blood counts have shown rapid progress since eliminating Septra and Maribavir in April. My Hemoglobin has reached 98% of normal. This has me thinking about testing out my stamina by trying to actually jog a bit on my next walk. In the last 3 years I could not run more than 50 yards without getting completely out of breath.

Groshong Eulogy
This coming Wednesday I have an appointment to get my central line catheter removed. The device has been hanging out of my chest since December 28 and has served me very well. It allowed direct and immediate access to my vascular system during and just after my transplant. Lately, however, it has gone unused. It has always been a source of annoyance and occasional itching. All in all it was a good friend, but I am not sorry to see it go. For the curious of you, below I have provided more information about the Groshong port and a picture of my install. It is a truly amazing recent invention that contributes to the increased odds of transplant success.

Thank you all for your continuing kind and supportive thoughts, prayers and wishes. It is totally impossible for me to imagine getting to this place in my life, and our lives here, without all of your help. Cathie continues to be a champ supporting our family while I am recovering. In a couple short months, I hope to be a productive member of society again! My doctors support that notion.


The Groshong Central Venous Catheter
------------------------------------
A brochure on the Groshong:
http://www.bardaccess.com/pdfs/brochures/bro-grosh-cath.pdf
The end of the Groshong is a rounded dead-end. Just above the dead end in each of the 2 channels of the dual Groshong is a short slit. The slit is forced open outward when fluid is infused into the line, disgorging the fluid into the vein. The slit is forced open inward when a vacuum is applied to the line. This is how they draw blood samples. When there is no pressure in or out, the slit remains closed. Before I knew all this I pictured the catheter as an open tube that is just sitting above my heart. I imagined that if the catheter was accidentally cut open it would result in a blood geyser, a big mess. It turns out that this is not the case. Knowledge is a big help in combating an over-active imagination.

My Groshong port installation:
Note: This picture of my chest is provided for the educational value of displaying an installed Groshong Port. Please click the link only if you are not offended by bare male chests. Also, I'd appreciate not finding the picture featured at hottestmalestrippers.com. I am, however, available for your private bachelorette and birthday parties. ;-)
Anyway... I have edited the picture to show the part of the catheter that is hidden under the skin. After it disappears into my chest it is tunneled up to and enters my jugular vein. From there it does a 150 degree turn downwards to a place where the jugular meets the Superior Vena Cava, just above the heart. When they remove the Groshong next Wed there is no sedation, they just slide it out. Gulp. Imagination, be still.

Day +106 Top Ten Recovery Indications

Top Ten Indications You Are Recovering from Your Stem Cell Transplant

10. You are discharged from the BMT unit before the estimated discharge date.
9. You can start tasting food again.
8. You start going crazy sitting around 'recovering' all day.
7. Your doctor asks you not to hang around the BMT unit between appointments.
6. You have to start clipping your uneven new hair growth so you dont look like Gollum.
5. Your doctor tells you it's now ok to drink alcohol.
4. You start thinking about creating a YouTube video diary about your experiences.
3. Your can actually understand the words on your latest bone marrow biopsy results.
2. Your pills are getting tapered off to the point where you can swallow them all in one gulp.
1. You start thinking that the bald headed look is rather fashionable after all.

Day +104 Graduation, BMB Results

This morning I had my last regular visit to the bone marrow unit at Scripps. It was both sad and wonderful. Wonderful news is that my bone marrow biopsy results indicate a quickly recovering bone marrow. No sign of MDS and related anomalies. The cure is definitely working! On the blood count front, my platelet count continues to recover from the April 8th dip. This morning was my last dose of Maribavir, the study drug to prevent activation of CMV. At the conclusion of this trial today they took the usual few tubes of blood from me, a urine sample, and an EKG exam. I was asked to complete a quality of life survey. Finally, when Dad and I were ready to leave the room, the nurses brought in a graduation diploma, which I have attached to this post. It is signed by many of the nurses and a doctor, I suppose the ones on the unit today.

That brings be around to the sad part. I am sad not to see the nurses anymore, although Cathie and I plan on coming in to deliver a group gift in May. Every nurse was super to work with. They were all upbeat, cheerful, knowledgeable, patient. Cathie and I got to know some of them well. I should say the same of the doctors. They all have been instrumental in bringing me to this new point in my life, one where my prognosis may now be measured in dozens of years rather than a few months. It's hard for me to fathom. Now I'll go to weekly appointments at the clinic nearby where I'll see the 3 nurses who provided 'supportive care' in the form of blood transfusions and Procrit shots in 2006 and 2007. Likewise, they are great nurses. And likewise, when I left their care last December I was very sad because I did not know if I would see them again. So this will be a homecoming of sorts and I think the nurses in the clinic will be glad to see me still kicking and as feisty as ever.

I'm going back to being a normal patient. I will check-in the front desk for the appointment, wait outside the offices like everyone else, wait my turn for a blood test in the lab; like everyone else. At the hospital up until today, I'd just show up, get immediately directed to a single room with a bed, and assigned a nurse. The transition to the clinic is a step towards rejoining life! The special treatment is ending! The progress must be real!

Day +100 Milestone, Sucked Gas, Once a Week

Today I reached the 100 day milestone, had to suck up a nasty tasting antibiotic gas, and converted to a once-a-week outpatient. And, oh yeah, my doctor smiled. Gad, the life of a post-transplant, never a dull day. Mmmm, what else. I also wrote my donor a thank you for his card from a couple weeks ago, and I got doctor approval to drink a beer or a glass of wine twice a week. Things are happening so fast!

The long story on 100 days.
100 days marks the beginning of phase 3 of the transplant recovery process. Most of the dangers from a stem cell transplant occur in the first 100 days. Most of the remaining danger occurs between day 100 and day 365, so called phase 3. So reaching day 100 is a great milestone. I feel very, very fortunate to still be with you, my friends and family. In the next 265 days I plan on doing everything the doctors tell me to remain healthy. Your support and inspiration continue to mean everything to me.

The long story on the doctor's smile.
My doctor has been a very serious kind of guy since I started the transplant process January 2. He is part of a 3 doctor transplant team at Scripps. When I was incarcerated in January the doctor on call for that week would make rounds every morning, visiting every occupied room. Here's the thing with the smile. These doctors go room to room on their morning rounds, and they usually see the complicated cases first. I surmised early on that by the time the doctor got to my room his mood was unpredictable but usually somber. My doctor hadnt cracked a convincing since I entered the program. But today his smile was ear to ear. Cathie and I smiled back real big.

Sucking Gas.
The gas I had to inhale through a plastic pipe was called Pentamidine. This anti-protozoan concoction will help me avoid getting pneumonia over the next couple months. It needs to be administered every 3 weeks. It should not have a side effect of suppressing my blood counts, as did Septra (Bactrim). Pentamidine is yet another drug I've taken that will most likely never be abused for recreational purposes. It tastes really bad and makes you dizzy.

Schedule Change.
Starting Tuesday I'll start going to the local clinic to see my doctor once a week. This is sweet progress. I mean the part about getting to drink beer again. :-)

Day +97 Ouch, Progress, Gollum, Salad, Bday

Todays bone marrow biopsy was ouch. My Dad was with me at today's appointment and got to finally see me undergo this procedure. No screaming, just pillow clutching and grimacing. I was hoping he would read his paper cuz I had doubts about his ability to dispassionately watch the proceedings. But no. He had to watch. I thank God I did not have to watch, mainly cuz I laid on my belly as they cork screwed into my tailbone someplace. I hear the tool is very impressive. And, thank God this will be my last bmb until next January.

I've posted my blood counts on the blog page. The highlight is that my whites made a dramatic 25% jump from 2.8 to 3.5. Since I stopped the antibiotic Septra 12 days ago this was the hoped for result. My platelets rose a few points too, signaling a believable end to their mysterious slide of April 1 through April 8. I have 7 more days on the trial drug Maribavir. I am told the end of this drug will also result in improved blood counts. Progress is sweet. My doctor gave me the speech about how the infection protection I'm getting from the drugs I'm taking outweigh the protection I'd get from simply higher blood counts. So it's a trade off, the drugs suppress the blood counts to some degree.

Hairy update. I used my electric shaver's clipper attachment to run around my head over the weekend. The way my hair is growing, up close it appears that random follicles are growing at different speeds and different thicknesses but always gray; I was well on my way to looking like Gollum, 'my precious'. My brief reverse mohawk look would have been a soothing sight by comparison to a single strand comb over. If I let my teeth rot I could join the Hobbit circus, getting extra tips for showing the braided 3 hairs growing on my left big toe. Well, that's another story. The body is still up-ended at this point. I can still feel the ongoing confusion. Believe it or not, I havent written about everything that has happened to me since my transplant!

Last Friday there was a brief hint by a nurse about a possible end to my neutropenic diet. The goal of this diet is to minimize the introduction of bacteria. I've been on this since January 2. The diet is difficult to follow during strawberry season. I cant eat fresh fruits, raw nuts, salads, leftovers, many cheeses; the list goes on and on.
Today my doc said I can now eat 'anything I want' provided it is prepared at home. I can now eat strawberries, apples, cheeses, salads, etc. The one thing I'm still not allowed to eat is restaurant-prepared food. I especially must not eat at buffet style restaurants where food is left out for all to sneeze on. Kinda scary, that. I think I'll take Soup Exchange permanently off my list after the nurse told me some stories about it.

Maddies 16th birthday was yesterday. We threw her a home cooked family party. After supper we sucked up the helium in half a dozen balloons, talking like Mike Tyson and Betty Boop. We had a blast. We love her and I am very glad to still be around to enjoy this event in her life.

Good health to all! Thank You for all you good wishes!

Day +94 Plats Up, Happy Man

After my last post I received several reports of children who were allowed to view my anti-mohawk haircut picture and subsequently had to enter therapy for chronic nightmares. I apologize for this and am I'm hoping to correct the damage by posting another picture taken only minutes later. This is a picture of a 'nice' man who is happy with his new haircut.

Yesterdays blood test showed a slight improvement in platelet counts. Yay. What's next eh? Whites slid, then platelets slid. I guess it just reinforces the fact that I'm in the middle of a 6 month recovery process. It's easy to lose sight of that.
The antibiotic I was taking for 3 months will be replaced with one who's name escapes me. It is administered in a very different manner, it is inhaled. On April 18, my +100 day milestone, I will go to a special little room in the hospital where I will suck it up. The good thing is that the drug is dosed only once every 3 weeks. I am told the dosage device is a long pipe. There will be a native american doctor present who may be wearing several necklaces of beads and helping to administer the drug. Ok. NOT on that.

There is a chance that the trial drug I'm taking, Maribavir, may hinder blood count improvements. But I am due to conclude the use of that drug in around 2 weeks. So far I have tested negative for CMV (cytomegalovirus), the main target of Maribavir. So I hope to complete the 12 week study. The study coordinator nurse tells me that I may not learn if I was taking the study drug or a placebo for 1 year, until the entire study is over. I'll tell you what though. If the little blue pill is a placebo they sure went out of their way to make it nasty tasting. Would the drug maker go through such lengths to keep the trial patients from knowing what they are taking? It really tastes like a drug to me. Anyway, it doesnt really matter, just a matter of curiosity. I guess if I start growing a second spleen or something and it's due to the study drug I'll wish I hadnt taken it. However, it's only by patients volunteering for these drug trials that the drugs can get approved and help future patients.


I was told to reduce my immune suppressant drug, Tacrolimus, by another milligram. So now I'm taking 4Mg, half of what I started with. When this dose goes to zero my doctors will be ready to certify my immune system as able to cope with the real world. I can go back to work in an office, stop wearing a silly surgical mask, eat raw spinach, go see a movie. I can hardly wait!

Day +91 Bad Hair Days

Yesterdays appointment went like most others in many respects. I'm not having any physical symptoms of infection or graft vs. host. However, one thing that has come down unexpectedly is my platelet count. Since the month started I went from a reading of 95 to a reading of 32 yesterday. If it gets below 15 they will need to take action, namely a platelet transfusion. I'm told the platelet anomaly is most likely a reaction to the regime of drugs I've been taking over the last 3 months. They see this kind of thing a lot. They've had me stop an antibiotic, the likely culprit. The common drug name is Septra. They also suspect Septra for my recent bout with low white counts. So now I am off the drug since last Friday. Already my white cell count has risen to 3.0 from 2.6. Hopefully by this Friday my platelet count will show an improvement. The doctors say that everything points to my drugs as the problem. Next Tuesday I'll go in for my 5th bone marrow biopsy. Another 15 minutes of frantic pillow clutching and deep breathing will be in order on that day. I wish they'd just use the same hole they poked in my tail bone last time.

This post is my official foray into chemo 'hair'. Everyone has been asking me about what happens to your hair as a result of intensive chemo. NOT! Actually no one has asked but I think the chemo hair issue is pretty interesting so I'm going to take a blond moment here and brush you up on the subject. I promise knot to bore you with too many de-tails and I will keep it straight and short. :-)
How weird is hair? Not having any for awhile adds perspective. The picture I've posted to the right of this post was taken just a day before submitting myself to a month long incarceration in the bmt unit. You can get a rather large wallpaper-worthy version by clicking on the picture. Be sure to check out the clear patch on my neck. This covers the hole where, just a day earlier, they had threaded a tube through my jugular down to a place above my heart. The reason I look pissed off is that... I usually am after surgery. Also, I had asked the barber for a trim around the sides and found myself looking like a reverse mohawk. Really though, I did not want to worry about losing my hair after chemo so I asked Cathie to chop it off in advance. We had our fun clipping it off. There were happy pictures taken too! I swear!

Here is what happens to hair during chemo.
The chemical, Busulfex interferes with cell division. Basically, in the presence of busulfex, cells trying to divide can NOT. There are over 200 different type of stem cells in the human body. They divide at different rates. This much is known: bone marrow stem cells are some of the quickest dividers. Their life span is less than 6 days. If they cannot divide successfully then they die off. This is how the chemo gets rid of the old stem cells. However! All other stem cell division activity is affected. For instance, stem cells that divide every 24 days will not be totally destroyed, only the ones that tried to divide during the 6 days of chemo. Therefore 75% of them will survive and eventually repopulate themselves back to normal numbers.
Where does hair come in? There are stem cells that create the cells that create hair. Hair stem cells divide pretty fast but not as fast as bone marrow stem cells. During chemo, many of them perish. I'm guessing that a majority of hair stem cells bite the bionic dust during chemo. It takes months for the remaining hair stem cells to recover. There is some speculation that donated bone (myeloid) stem cells may be able to differentiate 'upwards' and help repopulate other stem cell populations throughout the body. Amazing things, those stem cells.

I remember my head hair falling out over a short period of time around day +7. I hated seeing the dead soldiers on my pillow as I came back to my mechanical bed from my many trips to the boys room. So, when I took a shower I massaged my scalp and that sped up the processes. My last facial shaving was done around the same time. Funny but not all hairs are created equal. My eyebrows survived albeit thinned. Eyelashes did not take a hit. The hair on the outside of my lower legs bit the dust but much of the hair on the inside survived. My arm hair, thinned but intact. Yeah, I think I'll leave the inventory taking at that point except to say that the worst hair loss was definitely on my head and face, sans the eyebrows and eyelashes. Everywhere else got a major thinning.

My hair is coming back. This is how it's coming back; not all at once. It seems like thin hairs started to show themselves first, right above and below my lips. Thicker hairs started growing a little last week so that I felt like shaving a few days ago. Unfortunately my dreams of having my original hair color come back have been shattered. The gray is returning along with the dark brown. The hair on my head is started to show, barely. It is causing a lot of itching up there so I've taken to massaging my scalp a few times a day. Maybe this helps the hair follicles find the best path to the surface without getting hung up along the way, causing irritation.

Well, there you have it. All you never wanted to know about chemo hair loss and recovery! You heard it here first! Happy shampooing and happy health to all!

Day +82 Donor card

Today is a light transplant news day because this week my appointments move to Tuesdays and Fridays. My next appointment is tomorrow. Once again, my health this past week has been good!

Thursday I learned that, in May, my appointments will move to the clinic much closer to my home. That is where I saw my oncologist doctor and where I went for my frequent blood transfusions during 2006 and 2007. My doctor is one of the 3 transplant specialists who run the transplant unit at Scripps Green hospital in Torrey Pines.

Also on Thursday, I received a card from my Donor via the organization that represents him, the National Marrow Donor Program (NMDP). I am really happy to get his card. You might remember that I had sent him a letter a couple weeks ago to update him on the status of his donated stem cells. I told him that they are making like bunnies and now are well on their way to totally repopulating their new home. I first gave the letter to my nurse. She edited it and passed it on to the NMDP. After censoring it they would have passed it on to the donor.
At my appointment Thursday I was shown the card's face from a distance by the head nurse who felt she could not give me the actual card because 3 words had been blocked out with a black sharpie by an censor at the NMDP. She was afraid that I would be able to see through the black ink and read the 3 words. So she had photocopied the card and gave me the copy, thus eliminating the see-through possibility. Both the NMDP and the hospital collaborate to ensure that the donor and recipient do not learn each other's identity. Each organization only knows the identify of their own client. I totally understand the need for the secrecy given the circumstances. But it's still fun to make fun. The donor's sentence that caused the censorship was this.

"The anonymity part of this seems so impersonal so I will assign us names of Recipient (censored) and Donor (censored)."

And it was signed:

"Donor (censored)"

It is a very nice card. He is glad things are going well for me. The 3 censored areas that were blacked out were very narrow so it looks like the donor was simply trying to give us short fake names other than Donor and Recipient. Kind of funny, eh? A little research shows that the word Donor is also a proper surname. There are at least 76 people with a last name of 'Donor' who live in California. So hey, maybe my guy is one of them? I guess the NMDP really has no way of knowing whether Donor is really trying to communicate a real name to me via a fake 'fake' name. Kinda funny eh? I'm going to alert Donor to the censorship of his assigned names and propose that we put off sharing any names other than Donor and Recipient until after January 9, 2009. That is when the NMDP relaxes their donor-recipient communication rules.

Day +75 Xplant Just in Time, Go Reds & Big Red

Go Reds!
Only positive changes to report this last week. My hemoglobin counts are ticking upwards instead of in wild fluctuations. It's up to 12.1 today which is approx 86% of the lower end of the normal range and 81% of my last normal reading in a 1999 blood test. It was 6 years after 1999 that I got my next blood test and got the Myelodysplastic Syndrome (MDS) diagnosis. My hemoglobin at that time was 6.1 and I was very, very tired.
Last December my white blood cell and platelet counts were in the normal range and the Hgb count was terrible. At this time I've have the reverse problem. Hgb is gaining but the WBCs are stuck in the mud. Today my doctor told me not to worry about the WBCs in the mud. He said the white cells are the hardest cell line for the stem cells to get re-established. So, apparently they will rise more slowly that the other 2 cell lines and I'll just have to keep avoiding opportunistic infections. I can deal with doing that; compared to where I could be right now. In 25 days I will reach another milestone, passing the 'Acute GVHD' stage. The word Acute in medical lingo refers to "coming speedily to a crisis". The upcoming phase 3 of the transplant experience is known as the 'Chronic GVHD' phase. Chronic in medical lingo refers to symptoms that "progresses slowly". If you had to choose acute or chronic, chronic is definitely the way to go. It's beginning to look like I'll pass the Acute GVHD phase without a hiccup! That's me talking not the doctors. They will NOT venture a sentiment such as that at this time because they've seen it all. But I cant resist thinking that going this long without the slightest sign of GVHD must be a good thing. My end of phase 2, 100 day milestone celebration will be tempered by having to get another bone marrow biopsy.
I want to mention that I'm on a clinical trial with a new drug meant to prevent the establishment of a normally dormant virus called Cytomegalovirus. The drug is called Maribavir. There is actually a 33% chance I'm taking a placebo instead of the study drug. But so far I havent contracted CMV from my donor who tested positive, so maybe the drug is working. Around 70% of everyone carries CMV. With a compromised immune system CMV can cause all kinds of bad things to happen. Normal immune systems keep CMV in a mostly dormant state. I have around 4 weeks left on the Maribavir trial.

Xplant Just in Time
I was looking at my bone marrow report from Feb 7 and just noticed it talked about my previous bone marrow biopsy from December 21, 2007. What I just learned is that the December test results placed me in a different categorization of MDS. My MDS categorization prior to December was RCMD which basically means that all 3 of my stem cell lines were messed up. The December report, of which I now have a copy, states that I am now re-categorized as CMML. This stands for Chronic Myelomonocytic Leukemia. The reason for this change is that my old stem cells were starting to crank out too many Monocytes, a behavior indicative of Leukemia. CMML is more serious than the RCMD classification. For me it meant that my MDS was evolving to dangerous forms. Acute Myeloid Leukemia (AML) may not have been far off on my horizon. The good news is that my old MDS classification doesnt matter anymore. My Feb 7 bone marrow biopsy report says "...there are no morphologic indications of persistent CMML." As a matter of fact there are no indications of MDS at all!

Thanx.
So what does one do when one is confined to ones house for days at a time? Well, this one counts his blessings. Highest amongst them is my appreciation for all the prayers, support, and inspirations from all of you. I totally credit my ability to survive the horrendous month in the hospital to your help, starting with the wonderful hands-on help from Cathie, Grandpa, Grandma, Maddie and Dylan. We are all one family when we care about each other and take the time to reach out. This experience has been and continues to be a lesson for me in how powerful we can be when we direct our inspirations and love towards others.
What else does one do when house-ridden? Well, last weekend there was a lot of watching the NCAA basketball playoffs. This is especially exciting when ones wife attended UW Madison, where the Badgers (Big Red) play. They are in the sweet sixteen! We also had a good run here in San Diego with the mens and womens teams from University of San Diego. The mens team lost in the 2nd round. Other than the above I spend my time reading, walking (with mask), and puttering. My pre-transplant levels of energy are still illusive but I understand the energy will eventually return. And I mean return all the way to my pre-MDS days!

Day +68 Forward to the Past

Parker and Mom back at home now. Whew!
Parker, like me last month, had too much bilirubin, had to stay hospitalized for a few days. Excess bilirubin in newborns is called Jaundice. In adults it can lead to renal falure. Fortunately, the bilirubin has worked itself out for both of us. But we're not out of the woods yet. Parker is a week old and I'm 68 days old. Things are still getting straightened out inside. Organs are aligning, brain is booting up, lungs getting tested. Parker's journey was much, much more traumatic than mine. I feel for him. He went from the perfect environment; not a care in the world, occasionally feeling a little curious about various things floating by and the source of the brightness that sometimes entered his space, to unbearable pain, unwanted movement, and the cold; the bright lights and reaching hands. Ugh. Parker was transplanted to a different world. I just got a minor overhaul. Went in for my 100K mile servicing and it turned out I needed a new transmission. Same world for me. My journey was more nauseous than it was painful. And I knew what all the reaching hands were; nurses and doctors. Parker wouldnt have known. It must have been a nightmare for him. The awful nightmare of birth would have lasted right up until the second he looked into his mother's eyes. Then, it was love at first sight.
Parker is my transplant buddy cuz of his problem with bilirubin. However, Samuel, who I havent heard as much about, is also my bud. They are my new grand-nephews born last week and I welcome them to the world. They both have the greatest moms and I am very excited for their future.

--

My weekly summary is... Great! Blood counts posted on website. White cell count dipped but is not in the danger range. More on that later. However, I need to be even more reclusive for the time being. Hemoglobin count breaks a record! 11.7!

Today at my Monday checkup I learned a little more about some of the pills I am taking. One of them will be reduced again on Thursday. They come in 1 Mg capsules so that the doctor can prescribe several to start and then scale back by reducing the number. I started Tacrolimus with 8 capsules and have been at 6 now for a couple weeks. Tacrolimus suppresses the new immune cells from beating up on foreign things they find in the body; like lungs, skin, liver. Over 2-4 months, the new immune cells settle down and stop being such bullys. Somehow, they learn to recognize important organs as 'friendly'. The Tacrolimus drug is scaled back accordingly. Since I have been on the 6 pill-a-day regimen there have been no signs of my immune cells attacking the usual suspect, so they will scale the Tacrolimus back to 4 or 5 pills on Thursday. Another drug I'm taking, Ursodial, is due to be discontinued on day 90, around 3 weeks hence.

Regarding my dipping white blood cell count. The doctor said it is probably due to the antibiotic I'm taking, Septra. Evidently this suppresses more than nasty bacteria, it also aint good for neutrophils. Kind of a 2 edged sword. I guess the danger of bacteria infection is greater than that of virus. The bacteria the doctors are particularly worried about is Pneumocystis carinii pneumonia (PCP).
In light of my lower white counts I have decided to not tempt fate. I'm going to really avoid public areas more than I have. And when I'm outside on walks I will wear an N95 grade face mask again. I dont want to get sick. Any infection I get at this point will be very serious and probably put me back in the hospital. My white count actually rose 20% from last Thursday, so hopefully the count has dipped as low as it is going to go.

If feels good to be able to say, "I'm the guy who formerly had Myelodysplastic Syndrome but was cured!" Now all I have to do is literally keep my nose clean for the next few months.

Day +60 Socal Slides, WBC slips, Babies

Greetings from still-green Southern California. To follow up on my post from last week, I've included a short slide show. It has 5 pictures taken last week covering the Borrego desert, 60 miles to the East, all the way to the coast near my home.

If you are reading an Email version of this post you may not see the slide show and will have to view it from the blog page. The slide displays are very small renditions of the actual pictures. The pictures are actually 4 to 5 Meg each in size, rich in detail and colors. To view the full pictures you can click on the picture a couple times and it will download the original version which will be much larger than your monitor can probably display unless you are using some humongous HDTV. The purpose of the slide show is to let you see how beautiful Socal can be this time of year as well as give you an appreciation for the diversity of environments we have here. Both San Diego and Borrego are located in desert climates and the response to spring rains is very similar, they put out grass and flowers like crazy for a very short period of time. The first 3 pictures were taken Wednesday morning in Borrego. The desert floor is covered with grass and blooming flowers. Picture 4 was taken in the foothills of the Laguna Mountains a couple miles south of Santa Ysabel. Picture 5 was taken at the spot near my home that prompted my 'rolling green hills' comments last week. If you can click through to download the full version of these pictures I think you will appreciate them.


As for me, things are very similar to last week. My white cell count is down a little but the doctors say there is no cause for concern other than to be extra vigilant at this time with my anti-infection precautions. My other blood counts are stable. My energy level continues to increase. I was able to enjoy a nice car ride out to the desert with my Dad last Wednesday. We walked around the desert just long enough to get some pictures and enjoy the famous desert quiet. On the way there we stopped in at Santa Ysabel's Duddly's bakery and bought a loaf of their awesome potato bread. Today Dad and I took a long walk in the neighborhood. Afterwards I was pretty tired. Sometimes it is frustrating to realize that my recovery will take 3-6 months. I wish I could spring back more quickly and rejoin life. However, at this point I still need to review my blessings and many inspirations. I still frequent transplant blogs and forums so I know how quickly things can go wrong after a transplant.
I continue to appreciate the support and inspirations from you, my 11 readers. In the last few days two of my readers, who are also niece-in-laws, have had baby boys, each their first baby. Congratulations to Shelli, baby Parker, and Cassie, baby Samuel! Life begins new for the babies and a different kind of life now begins for the new Moms.

Day +54 Tac Reduced, 100% Green, Donor Thanx

Doing very well thanx!
I've had 3 doctor appointments since my last post. I've updated the blood counts on the right panel of my blog page. Numbers are good. Although it is clear they are fluctuating, the trend for all 3 counts are upwards.

Last week my doctors decided that I could start reducing the immune suppressant drug called Tacrolimus. I'm taking 25% less of it now. This means I get to take 2 less of the pesky little capsules, I'm down to 6 of these now. Actually they are the easiest to take because of the small size and the fact they dont start dissolving in the mouth immediately. The biggest pill I'd like to jettison is the Potassium pill. It is much larger than needed, in my opinion. There are a couple of foul tasting pills that flake apart in the mouth almost immediately. I have to get these down as quickly as possible. Slowly the pills will be eliminated from my treatment.

Another significant development in my little medical saga occurred today when my doctor finally got back the most time-consuming test on my bone marrow biopsy of 25 days ago. The test indicates what percentage of my marrow stem cells are derived from my old stem cells and what percent are of donor origin. The results of my test are... 100% donor origin! Yay! The doc said this is why they put me through 'full chemo conditioning'. If they had done a reduced-intensity, or mini transplant, then my own stem cells would still be in there competing for resources. And, as I found out the hard way, faulty stem cells have an advantage over normal stem cells and will eventually win the resources battle. So, taking the full prep chemo route to transplant was so veerrrryyy not fun, but the decision is now paying off. My old faulty stem cells are totally gone and the donor cells have become my own. My new cells are now cranking out normal baby cells just like the stem cells of most every other mammal on the planet.

Today in San Diego was a day without clouds. On our walk, my Dad and I visited a hilltop a mile away from my house. The hill is really a huge flat, graded 20 acre pad in the high foothills of Black Mountain. The pad will someday provide the equal but opposite force needed to keep future parks, homes, and businesses, that will be resting on it from crashing to the center of the earth as a result of Earth's gravity. The open-hills view to the North towards Palomar mountain was remarkable. This is the truly the time of year in San Diego that touches the hearts of people who grew up in the Midwest. Everything is green. Think 'The hills are alive with the sound of music'. For a few short weeks green dominates the landscape. Green rolling hills. Maybe I've been looking at the Windows XP default screen background too long, but it's invigorating to me to see because the green surrenders to brown for the entire rest of the year. By May we will have brown and mauve rolling hills of dry sage, tumbleweeds, deer brush, and laurel sumac. Enjoy the green now while it's here. Get outside, go hiking, chew on a blade of grass.

Last week I wrote my donor a thank you and update. This is kind of interesting. The organization that manages the donor/recipient relationship is called the National Marrow Donor Program (NMDP). The donor's real name and address is only known to the NMDP. Once the donor donates their stem cells I am pretty sure there is no mechanism in place for the donor to know what became of his/her donation. The donor and recipient are allowed to write each other indirectly. Any communication is read, screened and edited by the NMDP. So I had to address my one page printed letter to 'Dear Donor'. I had to sign the paper with 'Recipient'. There must be no identifying personal data in the letter. That is, the donor may not know my name, address or even what city I live in. I guess the NMDP is trying to protect the donor from vindictive members of the recipients family and/or lawyers should things not go well. After one year the NMDP will allow the donor and recipient to communicate directly if both parties approve. For the time being I am known as 'Your Grateful Recipient'. In the letter, I summarized the excitement we had on day zero when we got his cells and how well since then his cells have apparently grafted in my marrow. I thanked him profusely and was sure to point out that however things go for me from here on, his generosity has made many people very happy, especially me and my family. I'm going to continue to update the donor every month as long as I have good things to report. I'm going to be tactful and not report to him any issues I may develop with GVHD in the future. I would not want him to feel responsible.

Your Grateful Blogger

Day +46 Avoid the Bug, Getting About, The Bill

News: I added a side bar called 'Blood Counts' where I'll report the values of my 3 stem cell lines; white blood cells (WBC), red blood cells (hemoglobin HGB), and platelets (PLAT). I get these numbers twice a week and still find them a great indicator of how well my new stem cells are grafting. They are still all headed up into their respective normal ranges!

Avoid the Bug.
Yay! I survived my first real test against the bug! Somehow I did not catch the bug that made my family so miserable the week of Feb 11-17. At this time everyone is mostly back to normal. I guess all the hand washing, constant sanitizing of everything touched, and wearing a good respirator when close to people worked well. Thanx to Cathie, Dylan and Maddie for their diligence. I was a prime candidate to catch the virus since my immune system is so weak.
At tomorrow morning's semiweekly appointment I expect the doctor to start cutting back the immune suppressant (anti rejecting) drug I've been getting. I've been taking four 1 Mg capsules of Tacrolimus twice a day. They'll cut that down to 7 per day and then maybe lose 1 more capsule every week or two. Without that drug, my new immune system will be stronger against viruses, bacteria, and nematodes.

Getting About.
This last week I've noticed a marked difference in my energy level. I've spent far less time in the recliner etching a permanent pocket in the cushion with my now-little butt. I've been going for walks and short shopping trips with my Dad and Cathie. When I go to a store I will go at odd hours when few people are around. Being outside is always preferable to inside because air circulation means less chance of breathing in possible bug-containing vapors. However, I still wear my mask. I ordered 10 new masks via the internet. They are rated N95, filtering out 95% of airborne particles. I have hand sanitizer stored everywhere in the house and cars. On walks, when I have to climb small hills I am noticing that I am not as out of breath as I used to be. When I get back I don't feel like I have to plop in a chair and veg for a couple hours, or take a nap. Strength is gradually returning. As my hemoglobin rises and the effects of the January chemo wear off I'm sure I'll feel better and better. I really feel like I may actually join the living again. I cant tell you how different I feel now than the middle of January. I've been home now for exactly 4 weeks.

The Bill.
Here's the deal. If you ever need the kind of treatments I've been getting in 2008 make sure you are insured or be ready to sell your house, your car, and anything else you may have available. As much as I've griped about insurance of all types over the years, I have to take it all back. Premiums are worth every penny spent when the unthinkable happens. Your house burns down, you cause an auto accident with serious injury, you get a rare illness, etc... Over the years one tends to start thinking one is immune to disasters. It always happens to someone else. Why keep paying for all these insurance policies and getting little back? Silly me. Of course now I am a hot potato. I could never get private medical insurance again. If you try to get medical insurance for just yourself and family you have to supply your complete medical records. 3 years ago I had an unblemished medical record. One year later that changed radically. If I were to apply for private medical insurance now, because I was self employed for instance, in California ALL the insurance providers would decline to insure me. There are a few states that prohibit such 'cherry picking' applicants based upon medical history. Now, I'd have to move to a state like Massachusetts if I wanted to be self employed and medically insured.
So here is something else to thank you all for. All types of insurance are based upon those that have 'no current need' helping those who DO have a need. Some of you may never have serious medical problems yet you will always pay high insurance premiums, often paid by your employer. Your high premiums are helping those people who have been stricken, like me. We all support each other in this way. So, you have helped me out not only with your inspirational messages, but also with my medical bills. I appreciate it.
Having said all that, I still think this country needs a lot of reform to reduce medical costs for everyone. Start with limiting malpractice payouts! Malpractice insurance premiums are a huge part of the high costs of medical care today. For example, many unblemished doctors are now paying over $100,000 per year in malpractice insurance premiums. They are passing this expense on to their patients.