Update #25

 

 

It’s official:  I am a member of the Disease of the Month club.  Jim and I were flipping through television channels last night and stopped in time to hear an actor say, I’m sick.  I have multiple myeloma.  If you don’t help me (obtain umbilical stem cells) I only have six months to live. 

That revelation nearly propelled me from my chair and caused me to whoop and holler.  I restrained myself. I am grateful for the attention brought to the disease, but the rest of the episode was much too melodramatic.  I have enough drama in my life without watching overwrought enactments on television.

Last Thursday and Friday, Jim and I were in Indianapolis for the Gaither’s Praise Gathering.  It was good to be out of the house, to share meals with old friends, and to hear all the artists in the concerts.

I could travel because for the first time in three months I am finally off the TPN (intravenous feeding).  Every night Jim took a high-calorie liquid IV bag, injected it with prescriptions and vitamins, connected it to a pump and primed the plastic line.  He flushed a line of my catheter with saline solution before connecting the IV which I wore for the next 12 hours or so.  Each morning, when the bag was empty, Jim disconnected the line, flushed the catheter with saline solution and Heparin (a blood clotting inhibitor).  Needless to say, while the dear man earned brownie points, the extent of my mobility was greatly hampered.   

Last Wednesday, Amy, my nutritionist called to say we could stop for the next two weeks and see if I can eat enough on my own.   It feels strange to count calories for the purpose of increasing them, to write down everything that goes into my mouth and stays down, but that is what I must do.  My taste buds are “off.”  Some foods don’t taste “right” but that doesn’t stop me from trying.  I really tried in Indianapolis.  Jim and I went to a steak house and I ordered a baked potato, thinking I’d have a few bites of Jim’s steak.  He ordered chicken.  I credit him with the loss of calories that night. 

I have mixed news about my bone marrow transplant. a donor match has been found for me.  No date has been set but still it seems odd that a stranger somewhere in the U.S. is being talked to about donating bone marrow for me. For my part, I must eat breakfast (usually a can of Ensure), swallow a monolithic pile of pills, then take smaller stacks throughout the day, some of which put me almost instantly to sleep. I snack throughout the day to reach my goal of 1,000 calories.  That “command” would have been a piece of cake (literally) a year ago.  Today, it is a payment I find hard to make.  Even the phenomenal meals Jim prepares are hard to eat.  Now, thankfully, I am making progress and getting stronger every day. I mean, it is progress when I’m disappointed that Jim didn’t order steak.  The good news is that I am getting stronger by the day.  Hopefully, in the next week or two, a timetable will be set for the transplant.

The tests of whether I am strong enough for the transplant have begun.  Last week while, thankfully, I was sedated, I had a colonoscopy and the “down the throat into the stomach” scope search. This week, I will have yet another bone marrow aspiration.  I’ll be “out” for that, as well.  Test by test, result by result, I will learn whether I’m physically able to do the transplant. 

There is a major non-physical concern facing us.  Vanderbilt may not be able to do my bone marrow transplant.  Not that Vanderbilt is incapable of doing it but rather that our insurance doesn’t cover the all expense of it. For reasons known only to those who sit “Dilbert style” in office cubbies and create such policies, I am covered if I go to Houston, Seattle, or Duke University for the procedure.  Not covered, of course, are the complications of a three-month move, lots of “out of pocket” expenses.  However, those three places are the best and that is good. Please pray for wisdom as we make this choice “to stay” or “to go.”  No matter where I’m treated, I’m being prepared to expect a dangerous, exhausting, body-rattling procedure.

Now it is mid-November.  Nashville trees are finally losing their leaves, wind whirls cold, the sun sets early, and my heart’s thoughts turn to holidays.  I’m on the brink of what many parents have doubtlessly experienced but it is new for the Chaffees.  Our boys are in Boston, both are working, and will work the day before and immediately after Thanksgiving.  My mother’s heart smells the turkey, sees families gathered around laden tables and my two boys in their all-guy house, just the two of them, consuming carry-out from Whole Foods grocery store.  How pathetic is that? 

And if that isn’t enough to take my mind away from IV bags and transplant travails, my thoughts jump to December and I see the same situation repeated Christmas Day.  So, if I’m not by then strapped onto some transplant stretcher and completely immobilized, Jim and I will do our best to fly to Boston for a few days. 

Thinking of the holidays, I think of all of you who read the pages of our continuing story along with us.  We are thankful for you.  I know that by Christmas I may be fired up with new stem cells and once again forcing down critical medicines.  Still, I am thankful for treatment and so aware that God remains worthy of gratitude. 

Now, wherever you may be, with whomever you celebrate, may you have a Happy Thanksgiving. 

 

Janice

 

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