Thursday, May 13, 2010

Tunnels of Cu Chi

Remember Vietnam, when we would kill a whole bunch of VC, but then a whole bunch more would crop up a little later? And we kept saying, ‘We’re winning, we’re winning!’ I am Vietnam, and the leukemia in my body is the VC. Sure, we won the battle at the Pancreas, but the problem is the VC are hiding, they are in tunnels, staying safe from chemo and radiation until the battle passes over, they hide in my brain and in my testes. And they looked just like the villagers, which played on our minds.

They are prepping their weapons with new protein coats to camouflage them from our attacks. As many aerial photos as we take showing there are no VC, they are there, waiting in the tunnels. I know we all wanted to celebrate that unexpected victory when leukemia disappeared from my pancreas, and it was elating, but now we have to march back to the front.

All my counts are good right now, slightly anemic. I met with my doc yesterday, to formulate a plan of attack, or the leukemia will be back in 6 months or so. There are essentially two options, neither all that tasty.

Option 1:
Embark on Donor Leukocyte Infusion. Fly Lisa out to Stanford, extract leukocytes (WBCs), and infuse them into me.
Pros
· If DLI works, we have long-term success. Odds are 10% that it will work.
Cons
· <10% chance of success
· At Stanford maybe long-term with complications
· “50% chance of post DLI acute GVHD (bad enough gvhd to warrant admission for nutritional support and skin care ...and high dose steroids and other meds etc.. of which many patients die)” doc
· If the DLI is too low a dose then it is a waste of time
· “Little Graft Versus Leukemia from DLI with acute lymphoblastic leukemia”
· “Tough call on what to do: the odds favor medical complications without much chance for benefit.” Doc

Option 2:
Aggressive chemotherapy first week of month, then three weeks of maintenance, ad continuum. This will give me maybe two years and become increasingly ineffective.
Pros
· Buys time, maybe one, outside chance for two years before leukemia kills me
· I can stay home
Cons
· Effects of chemo
· Possible hospital time
· 20% gvhd

In essence, do I take a 10% chance at long-term (1-10+ years) with a 10% chance of death, or do I muddle along with chemo and hope that in the next two years we have more cures (stem cells maybe)?

What a quandary, and I must decide by Monday; time is slipping and the enemy is in their tunnels prepping. I just talked to the doctor at Stanford to clarify a few things, and he had never seen a successful DLI with ALL, and said many hospitals won’t try it because it doesn’t work and leaves the patient in the hospital and then they die. At the end of our conversation I told him I was leaning toward the chemo route. He said that was a heroic decision but a good one, the DLI route is such a long shot with ALL.

So I have felt like I was facing death, and aren’t we all, but I guess I am choosing some quality of remaining life versus lying in a hospital bed. I know I have been lucky so far rolling the dice with leukemia, but sooner or later the odds bite you.

On a cheery note, I am almost finished restoring the garage to a TV/gaming room, where I will engage in swordplay and bowling with the family. I have nicer furniture in the garage than I had in the first 15 years after college! I still have a little work to do, but closer and closer each day.

4 comments:

  1. Seeing you today in the front yard encouraging plants with Miracle Gro was a great sight. It speaks to the quality of life discussion --- fresh air, a sense of "normal" routines, finding the joy in simple things, and being home. You have a battalion of people supporting you in your fight. You are a hero. Whatever your plan of attack may be - you are not alone.
    JennJenn

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  2. John Try looking this up on Google. PBS Nova Epigentic therapy Ghost in your genes. The interview was done in 2007. They have had success with treating MDS and other types of cancer. Bill

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  3. Man oh man. Y’all out there in California is livin in a difrint world. We never even thoughta puttin furniture in the garage. Well, Bubba and BettyJane, a couple a trailers down, have there ole sofa and a rekliner out under da tin car port an nats where they have BettyJane’s mom sleep when she comes in from LA (Lower Alabama).

    An geez, with all that nice furniture in the garage, whatyagonnado when you have to gut a deer and hang it up to bleed out? Doesn’t everything get all splashed up?

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  4. John...your chronicle of your experience is extraordinary reading...and your choices? My god. I'm thinking of you.

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