August 23, 2005

 

 

It is good to be home.  My sheets are soft, my towels thick, my refrigerator stocked with good food.  It’s true – “there’s no place like home.”

 

I’m even enjoying the heat.  My internal thermostat is still kaput so I’m always cold.  Several times in the past few weeks, I’ve gone outside to sit on the porch, in the shade of the trees, closing my eyes in the slight breeze and bone-warming heat.  If you see me in Costco, the movie theatre or church, I’m easy to recognize.  I’m the only one wearing a thermal undershirt, a long-sleeved blouse, and a sweater.

 

The continued good news is that I am totally engrafted and cancer free.  This miracle was accomplished with great effort.  I knew going into the treatment program in Seattle that there would a price to pay for remission:  tongue sores; weight loss; atrophied muscles; swollen ankles, hands and face – bloated appendages bobbing from flesh-colored ribbons; dry, peeling skin; pneumonia; fungal and bacterial infections; vomiting; countless transfusions; a kitchen counter covered with pill bottles.   All of the above was willingly endured in order to conqueror the multiple myeloma.  I was prepared to take on each challenge.  But not blindness.  Blindness was not part of the deal.  Near-blindness came uninvited. 

 

My vision was blurry in Seattle, which, I was assured, was normal; a reaction to all the drugs I was taking.  My doctors told me to see an eye doctor when I returned to Nashville and to buy cheap glasses as my vision would change yet again when I tapered off most of the medicines.  (I’ll take some prescriptions for six months; others for up to one year.)  But my vision worsened after my return home.  When I closed my left eye, I saw a black spot in the center of my right eye. 

 

I visited an ophthalmologist on August 1st and, as is usually done in an eye doctor’s office, read the letters on the wall.  I did fairly well with my left eye.  Then, I was to read the big E with my right eye.  “Can you see the letter?” I was asked.  “I can’t see the wall,” I replied.  After more tests, the doctor said that tiny blood vessels had burst and diagnosed the cause as CMV, an infection in my lungs that had traveled up to my eye.  For a second opinion, she set up an appointment with a retinal specialist.  At 7:50 the next morning, photographs were taken of the inside of my eyes (kinda cool), bright lights shone into my pupils through space-age contraptions, eye pressure measured. This doctor was emphatic the condition was not caused by CMV, but something else; the blood vessels had become clogged, like mineral-constricted water pipes.  There were also small cataracts in both eyes, not large enough to worry about now.

 

The doctor had no explanation for the eye damage, other than a side-effect from the stem cell transplant.  She said she sees this condition once every three to four years.  I wanted to shout “BINGO!”  I’ve had almost every stinking side-effect possible from each transplant.  I hold the chips when it comes to winning “We see this once in a while.” 

 

My oncologist sent me back to the ophthalmologist’s office on August 8th to determine if I had the dreaded Graft vs. Host Disease.  After another prolonged check, she verified that I did not.  On August 11, I revisited the retinal specialist.  She had just returned from a conference in Canada where she had discussed my case with doctors from around the country.  None of them knew of a correlation between a stem cell transplant and eye damage. 

 

The most aggravating part of all of this is that no one knows what to do, what course of action to take, how to stop the progression, whether the condition is reversible, or how to spare the left eye from the same fate.  My oncologist, determined to find the cause and a cure, scheduled a brain MRI.  No tumors or lesions were seen.  I’ve cried with frustration and fear.  It’s nearly impossible to read a book or the computer screen, watch the television, clearly see Jim’s wonderful face.  This feels like another Job-like moment.  And I mean more like Mrs. Job than Mr.  Yes, we rejoice in all the progress, but the damage to my eye causes me to very much want to cry out, “How much more can we endure?” 

 

Speaking of endure, on the 10th, I had my first physical therapy session at Vanderbilt.  The therapist stretched muscles that hadn’t moved in months.  I left feeling like a limp noodle.  A friend sent me a CD titled Sick Humor, The Lighter Side of Illness, a hysterically funny project by Carla Ulbrich, a cancer survivor.  My favorite song is “What if Your Butt was Gone?”  The lyrics are printed at the end of the e-mail.  It is my new theme song.  Obviously, Carla and I have a lot in common in our treatments and reactions.  One parody, to the tune of Willie Nelson’s “On the Road Again,” is “On the Commode Again.”

My sense of humor is returning. 

 

Well, there it is – a brief but honest catch up.  As I grow mentally stronger, the more frustrated I become with my physical weakness and frailty.  I can’t do what I used to do – but, then, I’m no longer the person I used to be.  Thanks for letting me spew my anxiety.  And, again, thank you for your continued prayers.  I am very grateful for the cards, letters, e-mails, gifts, quilts, jewelry, books, and money that you sent to me in Seattle.  I intended to write thank you notes to everyone; even bought a stack of cards.  But I had a hard time physically writing and no one could have read the scrawl.  Sometimes I feel guilty that this journey has been so long and drawn out, straining not only my family but my friends and colleagues.  But I couldn’t have done it without you, I’m convinced.  Consequently, I remind you again how humbled and grateful I am for your faithfulness and continued love.

 

Janice

 

What If Your Butt Was Gone?

I was just wondering – hypothetically
What would you do – theoretically
If something should happen accidentally or medically?
What if your butt was gone?

 

If sitting in a wooden chair felt like tacks
And you found you had nothing to hold up your slacks
‘Cause instead of a butt you now had just a crack
Well, something would have to be done.

If your butt disappeared without a trace
And everyone looked all over the place
Why do you have that look on your face?
Hey, it could happen to you.

If that booty patootie , that sweet derriere
Were now inexplicably no longer there How soon would you miss it?
How much would you care?
And what do you think you would do?

Would you call me up
Would you start confiding
how you tried to make it grow with florescent lighting
how you had to give up horseback riding
What if your butt was gone?

A butt as you know, can be skinny or fat
Dimpled or pimpled, curvy or flat
Like an opinion, everyone’s got one.
But what if your butt was suddenly not one?

Ending: sung to the tune of “Turkey in the Straw“ 

Does your butt hang low
Does it wobble to and fro
Can you tie it in a knot
Can you tie it in a bow
Can you sling it over your shoulder
Like a continental soldier
What if your butt was gone?               Lyrics „2004 Carla Ulbrich (ASCAP)