November 6, 2013
Our quality of life is counted by how well we
embrace each day, not by the number of days we live.
My husband’s father lived 99 years and since Bob was like him in many ways, he expected he would also live a long time. However, that seems unlikely to happen.
For more than five years he has gone to his doctor for frequent checkups of chronic lymphocytic lymphoma, CLL, the most common type of leukemia. When I accompanied my husband to the oncologist when he got that diagnosis long ago, the doctor said that many people live a long time with it and that he would very likely die of something else.
Fast forward to a few months ago when Bob’s hemoglobin count started dropping. They had tried everything to counter the anemia, including hormones for the kidneys (didn’t know kidneys help create blood), blood transfusions and loads of iron pills. Then about a month ago, his oncologist decided to dig (ouch) into his bone marrow for a more thorough analysis.
One thing they found was that he is missing Chromosome 7, which apparently promotes healthy blood production. This pointed them to a diagnosis of Myelodysplastic Syndromes (MDS), which is a precursor of acute leukemia.
The prognosis isn’t very good. Without treatment it will most likely become acute leukemia within a year. Even with an experimental drug, Vidaza, he is not expected to live much longer than that, based on his age and general health.
So now he is getting three shots of chemo in his abdomen for five consecutive days every 28 days. He will have four sets of these for four months before we know whether the treatment will prolong his life.
Attitude Can Mean a Great Deal
I have written several articles on hope and recovery, such as Five Factors Influence Health and Evidence of a Mind-Body Connection. In all of them I note that while we do not totally control the outcome of our illness, there is a strong indication that a fighting spirit helps in at least improving quality of life.
Right after the doctor gave us his diagnosis and stepped out of the room to get something, Bob’s first words were, “I am absolutely blown over by this. But I will fight it.”
What I find interesting in all of this is that twenty-five years ago I was a co-founder of a cancer support organization called The Wellness Community (now the Cancer Support Community). I gave many workshops there on living fully no matter what your diagnosis.
Now I am remembering a cancer nurse I knew back then who was diagnosed with breast cancer. She said it was like reading about diving into a pool and then having to actually do it. It was a whole different experience. The water was wet. The water was cold. You went under the surface and weren’t sure you would come up.
I think this is about the most apt metaphor for my current experience. I have talked with hundreds of cancer patients about hope and living one day at a time. But until it happens to you and your family, it is only theoretical.
To say that Bob’s diagnosis has set us back on our heels is an understatement, especially as it means both of us need to focus on our health. (See A Pain in the Neck in More Ways Than One )
He Should Have Stopped at Seven-and-a-Half Miles
One of the factors that will help determine the effectiveness of treatment is the basic health of the patient. In that case Bob has a lot going for him. Although he is 81 years old, he is strong and has always loved to hike. In fact, a week before the diagnosis he walked eight miles in the local mountains.
However, when he was one-half mile from his car, he fell, breaking his humerus (upper arm bone). Now he says he has a “chip on his shoulder.” I claim he has a chip in his shoulder, together with titanium plate and three screws.
He was admitted to the hospital the day after I was admitted for my body’s reaction to Botox. He stayed there longer, two weeks, for treatment for his anemia compounded by the surgery, a need for blood transfusions, and neuropathy in his legs, which undoubtedly contributed to the fall itself.
Retirement Community, Here We Come
As you can imagine, we are still in a period of adjustment and are taking it one day at a time. He requires a caregiver for some of his needs, but basically we are using them for making meals.
This gives me a chance to focus on what to take when we downsize for a move on November 15 into a retirement community, where help will be easier to arrange if needed, and less expensive.
Then on January 2 (our 54th anniversary) the house in which we’ve lived for 48 years will be on the market.
Share Your Encouraging Stories
I was asked to write about our experiences because others are going through similar struggles. At least they will know they aren’t alone.
Besides, one of the things that helps keep me sane is writing. So the blog will be one of my refuges. Since Bob and I tend to look on the bright side in most situations (he has a neat sense of humor) maybe I can share something that can be helpful to you. Of course, I could use some encouraging stories of people who have gone through downsizing and a situation like ours.
I want to close this post by noting that when he is saying good-bye to people, Bob’s most frequent comment is, “Remember, have fun.” We will both need that attitude in the months (and hopefully years) ahead.