Atheist in a Foxhole

Yesterday I went with Billie to UCSF to meet the team of doctors who will take my case from here. Like the first day I heard I had leukemia, there was a lot of blunt reality spoken. I asked for a prognosis and I got it with both barrels.

"You know why you're here don't you." asked the doctor."

"Yes.... It's the Flt3." I replied.

We then talked about options in protocol. One option would be the autologous stem cell transplant. That involves using my own cells to regenerate my blood. The prognosis for that would be a 20% survival rate. The other option would be the allologous transplant. That is when the donor is from someone else, preferably a sibling. The chances of a sibling match is 1 in 4 so I have pretty good odds there. The average outcome from an allologous transplant would be a 40% survival rate. Considering that if I do nothing, the survival rate is 0%, then I don't have much choice.

If the leukemia doesn't kill me then the treatment might. There is a death rate of 15% just from the treatment.

The factors that I have going for me is that I am relatively young and tough. The survival rates are skewed by others who were not so young or as tough.

In about a week I will be admitted to the hospital in SF for a round of consolidation chemotherapy. I will be sent home after that for about a month and then the fun really starts. I will then be given a round of chemo that will erase my bone marrow completely. When it is a blank slate then that is when the transplant will take place. During the recovery time that will be from 3 to 6 months I will be extremely weak and vulnerable to infections. During that time we will need to live close to the hospital in SF. Billie and I will need to find a place to live. I hear there is a nice trailer park in Pacifica. I am not sure if they allow dogs though.

I have a coordinator that will help with all the arrangements. Her name is Lisa. She will be contacting all my siblings soon and sending them a kit that they can take to a local lab where they can be tested for compatibility.

Right now I fell pretty good and am enjoying life here at our house in Sacramento. This morning I put on my roady garb and I took my old steel Colnago out for a spin in the neighborhood. I had to be careful to not get going too fast and get lightheaded. I still have a very low red cell count so I have to be careful. No old ladies on mountain bikes were able to pass me.

Da Ol Folks at Home

I talked to Gene last night and he said he has never written a single email or ever posted anything on the internet so when I compare myself to him I don't feel so bad for not posting anything for this past week.

The first thing after getting discharged, Billie took me to a little taqueria in our neighborhood. It wasn't until then that I noticed that my sense of taste was not all there. I seem to smell food OK but only half of my taste buds seem to be functioning. I hope this effect goes away when my hair starts to grow back. It takes a lot of the pleasure out of eating when you have trouble tasting the food.

The doggies didn't seem to miss me much. I can tell that they like Billie a lot more.

Not much has really happened that merits mention. I have puttered about the house doing minor housework. I snaked the bathroom sink so it will drain properly. I changed the battery terminals on our little Ford Escort so that we can use it. The Ford was Billie's moms car . It's over ten years old and only has 35.000 miles on it. I have been driving around town and running errands.

Last weekend we took a day trip to our Tahoe house and picked up a few personal things. I was amazed with how well my little kitchen garden was growing. It's been about two months since I last saw the garden. I have it watered with a drip system on a timer. We picked a bunch of stuff to go and left before dark .

On Sunday we went to the local farmers market in Sacramento. The place was mobbed. I bought a lot of fresh fruit and some sweet corn.

On Monday we went to see Doctor Ong. My white blood and platelet counts are within the normal range. My red cell count is still low and slowly rising. I can tell because I seem to walk in slow motion. My body has atrophied from the cancer and from spending so much time lying in a hospital bed. I've lost about 15 pounds.

Next week I have an appointment in San Francisco with the medical team there. I may be admitted to UCSF for my next round of chemo and a bone marrow transplant. All this is part of the strategy that is going to attack the FLT3 variant of AML that I have.

The rest of the time I have at home is spent reading and napping. I have been enjoying watching the Vuelta de Espana on the internet this past few weeks. This morning a young Irishman, Philip Deignan won the days stage after a long breakaway.

The weather here in Sacramento has been unseasonably cool. I like spending time on the front porch swing reading and watching the action in the neighborhood. When Billie is home from work we like catching up on the days news on the porch swing.

I really am savoring this time at home with Billie and the doggies. This time next week I may be back in a hospital again.

Hypothesis of Origin

I have had a lot of time to ponder just why I am a victim of this disease.  I mentioned earlier, my childhood exposure to lead.  Most of the literature about AML does not say much about exposure to heavy metals as a trigger or cause for Leukemia.  All of the theories about the causes of AML are only speculative.  

  The most frequent culprit that is cited as a potential cause of AML is exposure to Benzene.  Benzene is an organic chemical compound.  It is one of the most common and interesting chemical compounds that students learn about in Organic Chemistry.  The formula C6 H6 in a six sided  ring is a basic building block for millions of other chemicals. Just remove a hydrogen or two and add some other shrubbery to the ring and you have another chemical compound.  Organic chemists love the stuff.  It is also a known carcinogen.  

  I have been exposed to benzene through gasoline and many other industrial solvents .  When I was a younger cyclist I used to use gas as a solvent to clean my bike.  I don't remember ever wearing gloves.  Because I liked my bike clean, I probably exposed myself to a lot more benzene than anyone else in the general population.  I more often would buy solvent instead of gas.  I often bought solvent in bulk from the local Beacon station.  Solvent was less volatile but most likely had just as much benzene as gasoline.  

 I also used a lot of "White Gas" for my campstove.  

  I phased out the use of solvent and gas for cleaning my bike by the mid 1980s but by then I had used it a lot for at least ten years.  

  Now about 25 years later, the exposure to all that benzene may have finally caught up with me.  I was young and dumb.  I felt immortal.  Benzene my have been my culprit but maybe not.  It is only speculative.  There is also the chance that there was a genetic component that brought on the AML.  We will never know.    

My Counts Are Going Up

  It has been about 18 days since my last chemotherapy ended.  Finally my blood counts are slowly creeping up.  My marrow appears to be replacing my blood cells.  A week ago my white blood count was .1 and today it is .6.  My platelets are at 39 when a week ago they were 17.  I haven't had a transfusion in more than a week.  My red cell count is still staying the same but will soon start to climb.  The white cells and platelets are short lived so the marrow makes them at a faster rate.  The red cells can live about 40 days so they are made at a slower rate.  

 I have what they call petechiae all over my legs but mostly on my calves.  Petechiae are red marks caused from capillaries breaking just under the skin because of my low platelet count.  The dead skin that has accumulated by layers on my feet is looking like a thick crust.  I can't wait to get home and soak and scrub my feet with a pumice stone. 

   My hands are cleaner than I have ever seen them.  There is not a trace of ground in dirt in my palms.  I have no callouses. 

    My hair is still there but it has quit growing.  I haven't needed to shave for about three weeks.  My scalp still has hair but it's a little thinner.  

 My fevers have subsided and I no longer feel the need to nap off and on in the day time.  

  I may be discharged for a while, possibly before the end of the week.  It depends on how my blood counts are.  I don't know how long I will be allowed to leave until I have to come back for another round of chemo.  

  There is no word yet about whether I will be needing a bone marrow transplant.   

  Overall I feel as good now as I have since I entered this place.  I can barely feel the mouth sores that were bothering me so much last week. 

  Billie comes in twice a day and stays later in the evening.  In the morning she brings me fresh coffee from Peets.   Sometimes we watch Netflix movies. Most of the time we sit and talk or read the daily paper. Tonight I am looking forward to a break from the food here when Billie will be bringing in some homemade pizza.    I am so tired of the food here.  The menu rotates the same items every week.  I don't think I can ever look at another carrot coin.  

  My daily routine is the same.  The IV pumps tethered to me are constantly ticking and buzzing . Doctor Ong visits once or twice  day.  The nurses take my vital signs about every four hours and dispense my daily drug cocktail.  At 0400 AM the night nurse draws my blood and a few hours later the results come back.  Lately my night nurse seems as excited as I am as we watch my counts go up.  She can't wait to deliver the results to me.  My meals come at o700 1200 and 0500. 

   I can walk laps around the floor.  There is an atrium that I can go outside to and sit in the sun for a while.  Out on the floor there is a scale.  I have lost about ten pounds since I have been here.  Most of my weight loss appears to be muscle mass.  I can see it when I look at my legs.  My thighs seem a lot thinner.  My whole body does not seem to have much tone left.  

  As I write this I am listening to "the Prairie Home Companion".  I have KQED public radio playing through iTunes.   KQED has been in the background most of my stay here.  

  I really miss home.  I miss most of all being with Billie sleeping next to Billie.  The doggies are going to be happy to see me.  I really miss them too.  I hate to say I have a favorite.  Mojo is the happiest dog and he is so much fun to just watch.  His tail moves at a constant 200 wags per minute.  He holds a ball or a grapefruit in his mouth at all times if he is not throwing it at your feet.  The grapefruit is a kind of a ball.  There is a tree outside that is constantly dropping balls.  The grapefruits don't last long before they become split and crushed.  He then will start to manically eat the grapefruit wincing the whole time from the sour taste.  The trash is always full of disintegrated grapefruits.   Mojo is also the best watchdog. He sounds like the most vicious dog you have ever heard from behind the closed front door.  No stranger would dare enter after hearing that sound.  He won't ever attack though and prefers to go in his crate and bark from inside there.  He is actually the sweetest dog.  If you show him a ball he will instantly forget the watchdog stuff. 

 I feel I am closer than ever to home sweet home.  I can't complain about the care I have been getting here at this hospital.  I made friends with much of the staff here.  I still have a long way to go fighting this cancer.  For now though, I can't wait for a break from here at home.

I've Been Sick

   During the time since my last post I have been running high fevers and sleeping an awful lot.  I had another outbreak of painful mouth sores that throbbed day and night.  I was able to knock back the pain with narcotics most of the time.  When I was awake I was only half awake.  If I sat up and tried to read then I would find myself falling asleep in a short while.  Since Wednesday I have gone cold turkey off the narcotics.  I still endure some painful swallowing but I have a clearer head. The fever still lingers.  I have to remember to drink lots of water to stay hydrated and to quell the fever.  When I sleep for longer than a few hours then my fever creeps up and I have to endure more poking from the lab.  The lab cultures my blood to see if there is an infection.  At one point I had a staph infection but the doctor managed to knock that back with another cocktail of antibiotics.

  Now for the good news.....  My bone marrow biopsy results came back on Monday and it showed no detectable cancer in my marrow.  There was no detectable anything else either.  My marrow is at present empty.  Slowly my blood numbers are supposed to start coming up on their own.  When my white blood cells are high enough I will be discharged for a while.  I will still have to come back for further doses of chemotherapy.  

   I didn't think I would be lapsing from posting here for so long.  I will try to be a little more frequent from now on.