Friday, October 30, 2009

In My Room

I am in my new hospital room at UCSF. I have a window facing south with a view of a hillside with eucalyptus trees and a peek of the top of the Sutro Tower. Outside the room down the hall there is a solarium with comfortable chairs, a TV and a nice view of the city looking north. The door stays closed all the time. A technician was in here earlier to check the air flow in here. He told me there is positive pressure and a HEPA filter that circulates the air at least eight times per hour.
I'm overjoyed that the food is profoundly better than Sutter. The bread is not always white and there is a good selection of fresh fruit. The meat is not overcooked and the sauces have subtle flavors that suggest a real chef is at work. I have only been here for a day and a half now so I haven't seen the whole rotating menu but so far it is very good. I asked about how the menu will change after I am neutropenic. The nurse assured me that there will still be fresh fruit and salads. Recently a nurse did a study here and found that there is little or no difference in the cleanliness of fresh fruit over canned fruit as long as the hospital does the selection and cleaning.
This morning a spinning bike was brought here. I will have to share it with another patient down the hall. I spent about 50 minutes on it already. The seat is a little too cushy like most spin bikes. I prefer the more bone like saddle that I am used to. The bars don't adjust forward enough to mimic my road bike but you can't have everything. I have my cleats with me and the pedals are compatible which is nice.
I have started my first round of chemotherapy with the drugs Fludarabine and Busulfan. So far my platelets have dropped along with my white cell count but it seems that my red cells are holding steady for now. The regimen is for five days. They will give my body two days of rest and then introduce Mauras' stem cells next Thursday.
Maura stopped in today to say hi after she picked up her Neupogen. She will have to inject herself for the next five days to stimulate her bone marrow to dump a whole lot of stem cells into her blood stream. She will be back here next Wednesday just down the hall strapped to a table while they harvest all those fresh stem cells. I will have to go over there and visit for a while.
Overall I still feel good. The staff keeps asking me if I am nauseous or if I have any pain. So far so good

Take Care

Tuesday, October 27, 2009

This is My Last Day at Home

I had to postpone my trip to Washington for the dog races. Last week my doctor in Sacramento put the kibosh on my plans to go to one last race. "There will be other dog races", she said. If I was hurt and break something then it would be a huge setback. I crash enough just training my team. Racing increases my chances of crashing about a thousand percent. The factors of running new unfamiliar trails and passing alligator dog teams are just a few of the hazards typically encountered in a race.
Tomorrow I go to UCSF to prepare for my bone marrow transplant. I may be in the hospital for four to six weeks depending on how eventful my experience will be. I am hoping for a very uneventful time.
First there will be some more chemotherapy to wipe out my bone marrow. This should be the most intense chemo I have yet to experience. So far the chemo I have gone through hasn't been that bad. Chemo plays tricks with my sense of taste. I couldn't taste food or it tasted bad. I could swear that the fresh pineapple that they were giving me was prepared on the same cutting board that the kitchen had used to fillet raw fish on. Raw fish juice and fruit is not a good combination. Its enough to make anyone nauseous. In spite of that I had very little nausea during my first two rounds of chemo. I remember that during family road trips I was always the last one to get carsick. By that time my Dad so was tired of stopping all the time for all six kids that he just said, "Open the window and go. I don't want to stop now". Maybe that was why I was always the one to scrub the dried vomit off the station wagon after we got home. Since then a few years ago I saw another car with the tell tale splatter. I don't know why we didn't think of using a barf bag back then. With our family, a barf bucket would have been better.
I have been doing all that I can during my stay at home. I have gained my weight back and then some. I have been riding my bike regularly in spite of low red cell counts. I actually improved my speed some so that no more recumbents have passed me since those early days at home.
When I return to the real world I won't be the same person. I will have to protect myself from the sun because of all the carcinogens I have been exposed to. Billie can help me with that. Her episode with melanoma has made her avoid the sun like a vampire. If I ever get back on my bike again it will be long sleeves and tights all year long.
The one unknown variable will be Graft Versus Host Disease. I should get some GVHD but not too much. The doctors will have to try to balance it with anti rejection drugs. I need Maura's blood to take over the immune system in my body and attack any residual cancer cells that my own blood still harbors. Hopefully after a few months I can be weaned off the anti rejection drugs and go on with life. Commonly the GVHD attacks the skin and most can live with that. The worst scenario is GVHD attacking the liver.
The first few months after I am discharged from the hospital will be the most critical. I will be weak at first from low blood counts and susceptible to the million or so opportunistic afflictions. I can't see anyone except for my immediate caretakers and the doctors. I can get out but I won't be able to shop or go to restaurants. I will need to be revaccinated for everything I have ever been vaccinated for. I could easily be another victim of Jenny McCarthy and her scientifically illiterate horde of anti vaccination crackpots. All I need is to get whooping cough or measles because the population has lost it's herd immunity.
Overall I am feeling pretty stoic about this whole episode in my life. I can't say I am angry or afraid. I just accept that we have to do all that is possible and throw the best science we know at this beast. I am more worried about Billie and the rest of my family and friends and how they are going to deal with all this. The constant anxiety of this disease rearing it's ugly head again weighs heavily on us all.

Take Care.


Friday, October 16, 2009

It's Maura

Today I heard from my social worker that the HLA testing has found a match. I was told that the match was so good in the first test that the odds are 99% that the further testing will verify the match. If I was to choose who would be the donor for my bone marrow transplant then I would probably choose Maura, my youngest sister. She probably has the longest telomeres because she is the youngest of all my siblings. She also lives closer than most of my other siblings which will make it logistically less complicated.
It so happens that out of all my brothers and sisters that Maura is the only match. I am so lucky to have so many siblings. I was told that the chance of a match was one in four. The way my luck has been going, I was not optimistic. I am so grateful for Catholic church and their rhythm method. I never thought I would be as happy as I am now for that surprise baby sister.
I remember feeding Maura with a bottle and changing her diapers when I was 11 years old. I am sorry Maura that I waited for mom to come home that one time so she could change your diaper instead of me. I remember you looking at me and crying and I knew what you wanted me to do. I always felt guilty about that because mom was a little late. You probably don't remember.
My platelet counts are dropping these past few weeks. I had another bone marrow biopsy done yesterday to see if the cancer is coming back. Preliminary results show that it is not as bad as I thought it might be. Still it is more urgent than before that I be admitted soon to start my next treatment to prepare for my bone marrow transplant. Tentatively I will be admitted the week of October 26th. That gives me just enough time to go to Washington to do one last dog race. The race will be over by 0830 AM Sunday so we should be able to get back to SF in time.

Wish me luck


Friday, October 9, 2009

Puttin the Muffin Top Back On

I have been at home here for a month now in Sacramento. That is a lot longer than I thought I would be here. Getting ready for the bone marrow transplant has taken longer than I thought. The most likely donors are my siblings who have been doing everything they can to expedite the process. Their blood is being tested now and there should be results by next Friday. That will narrow it down some and there will have to be further testing after that. The doctors have been pretty vague about my future schedule. When I said before that I was going to go right back into the hospital at UCSF it was because the plan then was to go into my first round of consolidation chemotherapy. Now the doctors have decided to forego the chemotherapy and go directly to the bone marrow transplant. The urgency has something to do with my rare form of AML with the mutant FLT3/ITD gene. I have been to SF twice now with Billie for testing and preparation. I will go back Monday for a few more tests. Last time we took BART into SF and it was pretty easy to transfer to MUNI on the N line directly to the hospital. It was slower but much easier than driving the whole way.
Meanwhile at home.... I have started running my dogs again with my scooter. I started out with short runs along the neighborhood sidewalks. Now I am taking them down the street to the local park where we can run along the river for longer distances. I am seriously considering going to Washington state for the Pacific Northwest Dryland Championships. I was second there last year. I doubt I can win because my dogs have lost so much training time. It would be nice to go and just be part of that scene again. The dates are Oct 24th and 25th. The location is Roslyn Washington. Roslyn is slightly famous because they filmed the TV show "Northern Exposure" there. The way things are going I think I might still be waiting for my transplant. It might be my last opportunity for a long time to race my dogs.
I forgot to ask my doctor if getting off my ass was right for me. I went ahead anyway and started riding my bike again. At first I thought I would get out of breath and fall off but that didn't happen. My red cell count is still low but not much below normal. I can't go real fast but I have been riding up to thirty miles almost every day now. I have gained about two thirds of the weight I lost and my legs look a little more normal now. Only two recumbents (the shame) have passed me and that was a few weeks ago.