When My Days Are Good, Bad, or Sideways

February 4, 2014
If you haven’t been following the blog in the past several months, here are a few earlier posts that can give you background in understanding what I write today.



A few days ago I wrote an email to family and friends with the subject of “An Update by Arlene.” I’ve decided to use it for readers of the blog:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Dear Family and Friends,

Our daughter wrote to a number of people about some of the changes that have been happening in our lives and I want to share my perspective on them. Also, some of you did not receive her note because you weren’t on her list but are on mine.

As I believe you know from our Christmas letter or other sources, last fall we had to adjust our lives to Bob’s diagnosis of myelodysplastic syndrome with a life expectancy of perhaps six months to a year.

Then last week we discovered that his white blood cell count was very high, which could be caused by any of a number of things in addition to infections. To address the problem, the doctor suggested we should not do any more chemo — after each of two sets of chemo four weeks apart he ended up in the hospital — but he could try a new drug called Hydroxyurea.

It may offer a few weeks or a few months more if he also has blood transfusions once or twice a week. Since Bob wants to do everything he can to live as long as possible, he is giving this drug a shot. With the drug, there is even the hope that he may be around for longer than that, but it is highly unlikely. Without the drug, the time remaining is fairly short.

The consequence of this uncertainty means that our days are up and down and sideways as we try to judge how well he is doing. Does greater weakness one day mean the drug isn’t working? Does slightly greater strength the next day mean the drug is working? It is a guessing game with which everyone in this kind of situation is very familiar.

Fortunately, he doesn’t have any pain other than neuropathy in his feet and legs, a condition for which he has been stoic for years. His main problem seems to be general weakness and the need for oxygen much of the time.

Yesterday he asked me to drive him to his blood transfusion session and I thought it meant that he was through driving. Today, when we went to sign papers for selling our house, he insisted he drive and seemed a little more energetic, saying “Don’t take away one of my last pleasures in life.”

And speaking of driving, the one bright spot in all this is that on Saturday I started driving again — after more than seven months. My body’s negative reaction to Botox seems to have run its course and now my neck can actually move from side to side enough to see cars coming! It makes it much easier to run errands.

Like other families in this situation, we are finding both difficulties and strengths in going through this together. All our children have been or are coming to visit and recently both of my brothers have come out to see us. He enjoys visitors and phone calls to help him remember all the good times and pleasure he has had in his life.

Incidentally, you may have heard that Woody Allen once said he didn’t mind dying; he just didn’t want to be there when it happened. However, having gone through the dying process with my parents, I know that caring for the person who is dying can be a blessing in itself. So I know I wouldn’t want to skip over this experience even if I could.

Yesterday Bob and I were talking about the fact that one of the disadvantages of dying from a heart attack is that you don’t get to say goodbye. It has been good to have time to talk about our lives and what we have meant to each other, and to also straighten out some of the financial issues that are easier to deal with when both people are there to go through them together.

For example, signing the papers for the house today was a thrill for both of us. The house appeared on the multiple listing service a week ago and today we accepted the counter bid from the wife of the director of Bonanza. Like the other two who considered our counter bid, she sent a lovely letter saying why she wanted the house. One of the people even included a picture of their children. Guess it is true that it’s a seller’s market right now.

When I asked Bob a couple weeks ago what I was going to do after he was gone, he said that he didn’t know but that I was surrounded with good examples. And of course that is true, for this retirement community, like most, has a high percentage of widows, many of whom live full lives despite their various aches and pains.

However, I suspect that going from being married to being a widow is the part that’s going to be hard. As the saying goes, “When one door closes, another opens, but it can be hell in the hallway.”

Thank you all for your good wishes and for keeping us in your hearts and prayers.

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