Jim and I take great pleasure in our large musical instrument collection.  During our touring years, we tried to buy indigenous instruments in each country visited.  After we finished touring and decided to have children, friends contributed to our collection: a Nepalese silver horn, an Hungarian mandolin, an African zebra-skin guitar decorated with sea shells.  One of my favorites is perhaps the world’s first musical instrument, an Australian didgeridoo.  They are made from eucalyptus branches or bamboo trees fallen to the ground, where termites eat the entire core, leaving an inch thick shell. Aborigines use a stick or hot coals to clean out the hollow tube, then paint the outside with earth-colored symbols.

It’s next to impossible to get a sound out of a didgeridoo.  A great player blows air in one end and a low, slow-vibrating pitch exits the other.  The melancholy drone, a resonant, long-sustained note, shakes the soul.

I identify with the didgeridoo.  Multiple myeloma cells crawl like insidious termites, eating the marrow, creating tumors and holes, and leaving thinned,
brittle bones. 

From the last update, you know that surgery removed a tumor from my right shoulder.  It still hurts from surgery, though the inner pain is gone.  The doctor told me to start exercising, regardless of the pain, or the muscles will
freeze up. 

I began to limp a few days after the surgery.  This time it wasn’t because I was wearing two different boots.  Another tumor was growing in my right hip. 
So for 10 days, Feb. 2-15, I’m having radiation to my shoulder to kill any remaining cancer cells, as well as radiation to my hip to reduce the size of the tumor and, hopefully, fully destroy it.  My arm and leg look like a white board covered with football plays: black felt-tip circles, x’s, lines, and arrows to align the beams.

If that completed the “what’s wrong” list, I’d be happy, thrilled in fact.  However, the last MRI and CT scans show active myeloma in my neck, forehead, back pelvis, lower back, and both thighs. This cancer is deceitful and clever.  It cloaks itself and mutates, escaping chemo and cancer-fighting agents.  And, in my case, even detection.  This is why all the tests in early December looked clean, even as the myeloma grew.

This is where we go from here:  I will enter a clinical trial for a new drug.  It’s not yet approved by the FDA but is available in Houston and Indianapolis.  It won’t be Seattle in April for transplant review; it will be Indianapolis in March for treatment.  The Cancer Care Alliance has already told Vanderbilt that a second infusion of my donor’s plasma would not be effective, but perhaps detrimental.  After the radiation sessions, Jim and I will drive to Indy, not for an infusion or a chemo, but for a once-a-month prescription.

So, dear friends, again we wait.  By the time you read this, I will have completed most of the radiation sessions. 


Radiation makes me tired.  I nap every afternoon and sleep all night, though not without dreams.  Horrible dreams.  A few days ago, I woke myself up screaming, “Help me!  Help me!”  I have no recollection of what distress caused the scream, but once awake, once my mind cleared, I was aware of how thoroughly frightened I am.

Then, I think of the didgeridoo and know that beneath fear, behind all these procedures and within these hollow bones is a long, vibrating tone of safety and companionship; a tone impossible to sound but by that spirit, wind, breath of God which sustains me, even when terror strikes.  God is my helper.  He is constantly with me and knows my fears.  And He waits with me.

 We’ll keep you posted.

Janice

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