Interim Update – We’re Going Home

Posted by Barry Willdorf in Bonnie's Email Journal on August 5, 2010

Dear Family and Friends,

Yesterday we got confirmation that we can move back home the weekend of August 21/22, just a few days shy of 100 days post-transplant.  We’d been asking about this for a while but they didn’t want to give us the OK until Barry’s CMV was undetectable for two weeks, which it now is, and his counts (white blood and platelets) started recovering, which they have.

Last week Dr. Miklos stopped by when we were in the ITA (Infusion Treatment Area). Read the rest of this entry »

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AROUND THE CORNER – EIGHTY DAYS

Posted by Barry Willdorf in 1970sTrilogy, Transplant Stories, What's New on August 5, 2010

As the apocalyptics say: “The end is near.”  It’s getting close. Tomorrow will be eighty days since my second transplant! We will soon go home. Bonnie is feeling like a prisoner. She gets to visit her friends every two weeks or so. When that happens, I get a visit from Sam, who cooks up something good and we get a little time to talk/watch sports.

I haven’t felt much like writing since I got the news that I no longer was 100% engrafted. I’ve been there before and the end-game is no fun. I am doing everything they tell me to do — especially downing three liters (more or less) of liquids every day.  Every other day, I get to see new blood counts. I hang on the results. Right now things seem to be holding but I am looking for improvement, so I’m not getting what I want and growing a bit whiny.

In any event we will get to go home in about three weeks and I am looking forward to  better dining options and getting to see more people — maybe even the opportunity to tickle a grandchild.

About two weeks ago we saw the couple whom I described in So, You Think You’ve Got Problems in the ITA. She was in a wheelchair. We haven’t seen them again and can’t ask anyone because of medical privacy issues. We hope they are okay. Knowing they were able to keep her alive was an up.

As you can see, I’m not in a humorous mood. I have a bone marrow biopsy in 11 days and I always get nervous before that happens — as well as afterward, while I wait for results. That’s one of the things about cancer. There’s always a test or results around the corner and you just know that it’s a game of Russian Roulette. One day the bullet will be lined up with the barrel and boom, you’re terminal. Meanwhile you bide your time waiting for a miracle cure and dealing with stress and anxiety. A prognosis from hell. A war that never ends, kind of like Afghanistan.

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Five Years But Who’s Counting?

Posted by Barry Willdorf in Bonnie's Email Journal on July 25, 2010

Dear Family & Friends,

Today is exactly five years from the date of Barry’s diagnosis of CLL (Chronic Lymphocytic Leukemia).  The good news is that he’s still here, feeling good and looking good.  The bad news is that we’re still dealing with this shit.

Last Monday we got the results of the second chimerism (engraftment) test and the engraftment had gone down.  Needless to say, we were very upset, as were the docs, especially since Barry lost the first graft which led to a nastier and more aggressive cancer. Read the rest of this entry »

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SO, YOU THINK YOU’VE GOT PROBLEMS

Posted by Barry Willdorf in Transplant Stories on July 1, 2010

One Friday night, my PICC line was clogged.  We had to go to the hospital as the Cancer Center was closed. (The nurses couldn’t unclog it and I needed a clog-busting enzyme to roto-rooter it out.) While we were waiting for the doctor’s orders to inject the enzyme, a young Hispanic man shuffled wearily into the waiting area and slumped into a chair.

The three of us, him, Bonnie and me began talking. His wife — thirty years old — was just hospitalized. Read the rest of this entry »

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The Leukemia Diet

Posted by Barry Willdorf in Transplant Stories on July 1, 2010

Are you a couch potato? Have you grown too large for your Snuggy™? Do you hate to exercise and prefer cultivating bedsores? You like to eat carbs but you still want to lose weight. I have just the diet for you!

You’ve heard about leukemia and lymphoma, I’m sure. But what you may not realize is that the curative treatments deliver day upon day of fatigue and energy loss. But why should you care? You’re on the sofa anyway. You’ll have enough in reserve most days to punch commands into the remote. Trust me.

I’ve lost nearly twenty pounds in thirty days and I don’t have exercise to blame. Also, the chemo and radiation act as a powerful ally in the fight against excess weight. They make food taste terrible.

So whether or not you have one of the dreaded “L”s you might want to give a thought to a strong dose of radiation, chemo and associated pills. Get on that couch and lose those unsightly pounds.

Side effects may include nausea, diarrhea, constipation, shortness of breath, swollen ankles, edema in the lungs, headaches, renal failure, liver failure, heart failure, strokes and death. But what the hell, you’re well on your way with that stuff anyway.

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