Monday, April 16, 2012

Day 90

I've been practicing saying "Lord willing," for two weeks solid.

Things have been going smoothly. I've been getting stronger. I'm going into the clinic just twice a week, plus the photopheresis treatments, which they try to schedule on my clinic days. I've been home the last two weekends.

My daughter Leilani (left) and Katie, who gave me the "It's all good" T-shirt that's become my motto for leukemia treatment, went to a Hatter Tea Party this weekend as a prep for a local play based on Alice in Wonderland.
On Friday, I got a call from the long-term nurse practitioner. She said they plan to transfer me to long-term care as of May 3. That would mean visits to the clinic every 4 to 6 weeks. I would then give up the apartment that the American Cancer Society, the "Open Arms" program, and the apartment complex graciously donate to a hematology (blood disease) patient and their family, and I'd move back home to Selmer, about two-and-a-half hours away.

Of course, that's assuming there's no bumps in the road. If there's anything I've learned over the last 9 months, it's that there's an awful lot of circumstances and possibilities that I have no control over.

So I've been telling people, "I should be moving back home by mid-May ... Lord willing."

Come now, you who say, "Today or tomorrow we will go to such-and-such a city, stay there a year, and buy and sell and make money." You don't know what will happen tomorrow. ... You ought to say, "If the Lord wills, we shall live and do this or that" (James 5:13-15, Bible).

My hair's coming back. I grew a moustache two weeks ago and a goatee over the last week. I have a fuzzy, soft hair coming in on my head.

Maybe I'll have the equivalent of a crew cut by the time I get to my son's wedding (2 weeks).

What I'd really like, though, is to have full eyebrows. It's a little weird having eyebrows that are barely there. In the movie, The Lord of the Rings, they shaved the eyebrows of the actor who played Wormtongue to give him a more sinister or bizarre appearance. Not everyone notices the lack of eyebrows, but it affects your overall effect on people.

For Fellow Transplant Patients

First, not everyone's hair will be gone until day 90. Jerry's hair came back thick within a few weeks of his transplant.

Second, I want to pass on a pleasant bit of exercise advice. The following applies to anyone who needs to gradually exercise back into shape, or who has a lot of blood drawn, not just to transplant patients.

The physical therapy people gave me a stretchy band like the one in the picture above.

The one I'm using isn't theirs. It's a better, stronger one that my wife picked up for yoga. You can find them in the yoga section of any store that has an exercise section. I think they're pretty inexpensive.

Anyway, I know that soon they will be removing my Hickman Catheter, the permanent port on my chest that allows the nurses to draw blood and administer IV's without having to stick me with needles. Once they do, the nurses will have to find the veins in my forearms. If they're easy to find, then you get one stick and probably no bruising. If they're hard to find, there can easily be 4 or 5 sticks and lots of bruising, along with the nurse sliding the needle around under the skin trying to find the vein.

Not good.

This inexpensive little band can be twisted and pulled to work out my fingers, wrists and forearms, making the veins in my forearms larger and easier to find. I've been using it since I got out of the hospital, and my veins are significantly easier to see already. (Note: a nurse told me hydration makes a big difference in the veins as well. So, if possible, be well-hydrated if you're going in for blood work or IV's.)

That band can also be used for all sorts of upper body exercises without leaving your chair. You can also loop it over your foot and do some leg exercise the same way.

Wrap it around your shoulders and this is like a push-up, but easier.
I've found this really great on days that I've not had much energy. I could start using the band, without a specific set of exercises to do, and it's a lot like playing. If I keep the band loose, it stretches out the joints and feels pretty good. By the time I've played with it and stretched a bit with it, my energy level has usually increased, and I'm ready to wrap it around my hands, pull the band tighter, and do some real strength exercises. Or, if the problem was just that my energy level was low, it often has increased my energy level to where I'm now much more willing to get up and do a good walk.

The band also helped when I had the urinary tract infection. Walking would irritate my bladder terribly, but I could sit in the chair and do all the exercises I want with the stretchy band. If you wrap it around your hands some so it's tight, you can do some hard work that will make you breathe hard.

The doctors really push the exercise because it helps with mood, attitude, and recovery. The difference between patients who exercise and those who don't, they say, is immense. The band is one way to make it easier.


  1. It's an odd feeling being "released", isn't it? After all those months of being poked and prodded on a regular basis and your life hanging in the balance, to be let go and come back in 4 to 6 weeks . . you probably thought this would never come. Congratulations, God willing!

  2. Yes, it is odd feeling released. A nurse told me once that it's important to get transplant patients down to twice a week and then once a week before they're released because otherwise they actually get scared when they get sent home. They're used to being checked on every day.

    I felt a little of that the first time I drove back to Selmer a couple weeks ago.

    I am ready to go after that "new normal," though.