Medical Musings: Am I Coming or Going?

Saturday, August 8, 2009

Am I Coming or Going?

The Wedding Site

A huge part of me is completely absorbed with the wedding and its usual and customary ordeals. We have the license. There are rings. There is a date (Friday, September 4th) and a place (the wedding gazebo/chuppah on the grounds of the 1938 Spanish Revival/Beaux-Arts County Administration Center). Travel plans for old friends. A best man and an usherette. Tequila and mariachis!

Yet another huge part of me drags myself to Scripps Clinic every Monday for the all-important blood tests that will reveal whether or not I am responding to my last-ditch chemotherapy, bendamustine (Treanda). First, I descend into the clinic's deep basement to see the previous week's labs. Are the numbers up or down? Am I responding or have I run out of time? Thus far, every result has been inconclusive. Reply hazy — try again later.

Yesterday, I had the quarterly CT-Pet scan that insures against nasty surprises. During the procedure, half asleep, I was alternately planning my new life with Ivonne and as well as my funeral. Here's a sampling of what went through my mind:

Do I need to buy one cemetery plot or two? (Ivonne is so very young!)
Can I get mariachis to play for the wedding even though it is going to be held at noon on a Friday?
Am I eligible to join the clinical trial of Carfilzomib?
Should I wear a plain, gray suit or formal morning dress for the wedding?
I should probably have more than one executor of my estate.
Will it be difficult to reserve a cozy, romantic hotel for the Friday before Labor Day?
How much longer will this watchful waiting go on until my response to bendamustine is definitive?

After the CT-Pet scan, I picked up Ivonne's ring at the jewelers. There are nine stones inset in a band. I think it's handsome. She likes it.

On the good side, I think my schizophrenia is relatively mild. On the bad side, simultaneously laughing and crying is wearing me down.

The German Children

Hah hah hah!
The German children march along
Heads full of fairy tales and song.
They sing of angels in their lieder
They read of demons in their reader:
I think their little heads must swim.
The songs are jolly! The tales—are Grimm.
–Anonymous

1 comment:

SandyAugust 9, 2009 at 11:52 AM
Grimm indeed... I shall be thinking lovely thoughts on Friday the 4th of the two of you and intending that this step means the Universe is doing all that is necessary to create a miracle of healing... love has done this, you know.
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About Me

I have multiple myeloma, a rare, incurable, universally-fatal blood cancer. The average survival in 1998 for the newly-diagnosed was three years with conventional chemo, five years with a autologous bone-marrow transplant. Through a combination of diligent study and miraculous luck, I'm in good shape more nearly fourteen years later.

I've had just about every treatment medicine has to offer: chemotherapy, autologous transplant, allogeneic transplant from a matched but unrelated donor (a MUD), and a donor lymphocyte infusion (DLI).

I started blogging just before I was scheduled to have a second autologous transplant in early 2009, but there was too much cancer in the marrow. I was devastated. By November, my tumor burden was astronomically high: I had run out of time.

So I gambled on the rare and dangerous allogeneic transplant from a matched but unrelated donor, which is when I began this blog in earnest, but after a month I couldn't blog because I had become so weak I couldn't lift my hands to the keyboard. I was hospitalized for nearly three months; nearly died three times; and I continue in recovery more than a year later. My wife was once told to make "final arrangements" for me.

I wanted especially to describe my struggle with fear. Fear often leads to bad medical decisions: its acid eats away ones quality of life. Fear leads to too much treatment too soon, or to treatment too long delayed. I hope to explain the tools I've developed to neutralize it. I am writing a book on the subject which I hope to finish before I'm financially destitute: who plans to retire at age 53?

Along the way I'll try to provide the context of my life inside of which these tools work. Also, I can't resist the occasional digression.

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Saturday, August 8, 2009

Am I Coming or Going?

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