After starting this blog in August, I hardly blogged at all during the semester. Partly this was because with my teaching and other duties, I had little time to spare for blogging. And in what spare time I did have, I wasn’t thinking about blog topics. I was thinking about my Mom, who was fighting what turned out to be a losing battle with leukemia.
Years ago, as the stem cells in Mom’s bone marrow were going about their usual business of dividing to make cells that would in turn give rise to new blood cells, one of them made a mistake. A deletion occurred on Chromosome 9. That cell divided and gave rise to a whole lineage of cells with the same deletion. Over time, some other cells in that lineage arose with additional genetic errors that prevented them from making proper blood cells. Instead, they produced millions and millions of daughter cells that filled up Mom’s marrow with useless cells, crowding out the good cells.
Mom only became aware that there was a problem a couple of years ago, when she was diagnosed with Myelodysplastic Syndrome (MDS), which often develops into leukemia. And in Mom’s case it did. In March, on her birthday, she was diagnosed with Acute Myeloid Leukemia (AML) and soon started her first round of chemotherapy.
Mom faced all of this with remarkable courage. In the hospital, she joked, made light conversation, took photos of all her visitors, and kept her good humor through all of the indignities of hospital life – the flimsy gowns, the lack of privacy, the constant parade of people coming into the room to do this or that, the increasing need for other people to help with basic bodily functions. Mom accepted all of this gracefully. Though she did not like revealing her birth year to other people, in the hospital many times a day she cheerfully gave her name and birthdate to hospital staff, as required when receiving new medications or blood transfusions. She always liked to look her best. When the chemo caused her hair to fall out, she wore wigs and hats – but mainly to make her visitors comfortable. Over Skype, she asked us if we wanted to see the bald head, and showed us when we said yes, seeming entirely cheerful and matter-of-fact about the loss of the hair that she had been so careful to keep just so over the years.
As a family, we tried to learn as much as we could about Mom’s condition and treatments. Dad bought and diligently read a medical textbook on hematology. This information was interesting enough, and helped us understand what Mom was going through, but we never found what we were looking for: some hidden nugget that would help Mom live. And the scientific literature was far from comforting. Studies of AML (such as here and here) found that for most patients, even with the best treatments available, life expectancy was a matter of months rather than years, especially if they were older, had a background of MDS, and had multiple detectable genetic changes in their chromosomes.
I’m not sure what I imagined chemotherapy would be like, but the actuality was both more peaceful and more awful than I had expected. For the most part, it involved just waiting in the hospital room, attached to a rack full of IV bags dripping an array of different fluids, including saline solution, blood, plasma, and chemotherapy drugs, into a PICC line – a tube inserted into the arm that directed the incoming fluids right to the heart. At first, it hardly seemed like Mom was really sick. She was just like she always was, except confined to a hospital room and attached to an IV drip. But gradually the chemo did its job and took its toll, and Mom got sicker and sicker.
One of the chemotherapy agents that Mom received was Cytarabine. This is chemically nearly identical to cytosine, one of the four bases that make up DNA. It is similar enough that it gets incorporated into new DNA, but different enough that that new DNA doesn’t work properly, and the new cells die as a result. So all the rapidly dividing tissues – cancer cells, but also hair, skin, and the intestinal lining – suffer as a result, resulting in all the usual chemotherapy side effects.
Another chemo drug Mom had was Daunorubicin – a ruby colored compound isolated in the 1950s from soil-living fungus in Italy and named for a pre-Roman tribe, the Dauni. The bright ruby color of this drug made it look especially potent and menacing when it was injected. Daunorubicin molecules are just the right shape to slip in between successive base pairs in DNA strands, unwinding the DNA a bit and interfering with replication. Again, this wreaks havoc, not just on cancer cells, but also on all healthy tissues that rely on rapid cell division.
Mom endured two rounds of chemo, achieved remission, and came home, where before long, life almost seemed back to normal. She cooked dinners, played bridge, went to church, and even traveled across the country to see her newest grandchild. It started to seem that Mom was healthy and out of danger.
However, while the chemo had killed a lot of cells, it hadn’t completely wiped out the mutant stem cells. Instead, the few surviving mutant cells continued to replicate, acquiring new mutations on the way. By September, the leukemia was back, and just before Thanksgiving, it took Mom away from us.
The chemo took a terrible toll, but without it, what happened in November would have happened in March. Thanks to the chemo, Mom had a summer at home, visits from her children and grandkids, and time to say goodbye.
Mom wanted to live, but during what turned out to be her final hospital stay, she talked of how the quality of life, and the prospects for improving it, diminish. In one of our last conversations, she told me, “I had hoped to live long enough to see how things turned out for everyone. But then, even if we lived to be over 100, we would still want more.”
Mom was one of the very best people I have ever known, and it seems terribly unfair that she should be taken from us so soon. It’s hard to believe that such a vibrant person, so full of love and caring and thoughtfulness, the keeper of so many family memories and traditions, should be undone by the information copying errors of the tiny, mindless cellular machinery of her own body.
Around the time Mom got sick, my computer crashed. The Genius at the Apple Store said it was a problem with the logic board, and that there was really nothing to be done, since the repairs would cost about as much as a new computer, and that in a computer of such advanced age (nearly five years old!), more problems would soon be arising. Luckily I had my data backed up, and almost all the files on my old computer are now on my new computer. But Mom is gone. There’s no backing her up.
Religious minded people will be tempted to provide reassurance that Mom is in Heaven. That’s certainly what Mom believed, and if such a place exists, then surely she is there. But my own inclination is to think that we are material beings, and that our lives begin and end on earth. This materialist view provides its own comforts. “No Hell below us – above us, only sky.” There is no one to blame for the loss of loved ones: it just happens. But whatever one believes about the metaphysical, Mom left behind a great big hole here on earth.