“I love you,” his mother said, when he thought she was beyond speech, writes Glenn Fleishman.
My father called one day in 2006 with bad news. My mother had been diagnosed with cancer, a rare form prevalent among older Ashkenazi Jews, though mostly men, called chronic lymphocytic leukemia (CLL). The best guess with CLL is that it’s a genetic defect. By the time the disease becomes apparent, one’s white cells create bad copies in the marrow — hence the use of both the term “lymphocytic” for white cells and “leukemia” for the bone-marrow portion. The average time from diagnosis to death is 20 years, and my mother was in her late 60s.
That’s the average, though. The problem with CLL is the angle of its attack: how rapidly the disease progresses in the individual. A very low increase in malformed white cells is labeled “smouldering,” with the odds in favor of a sufferer dying from an ailment of old age before the disease would progress enough to affect him or her.
But a steeper growth rate means an earlier death. There is no cure. An allogeneic bone marrow transplant — killing your marrow cells with radiation or chemo to receive a transplant of someone else’s stem cells — has caused long-lasting or permanent remission.
The transplant comes with many complications, and you have to be in good enough health to receive the transplant safely in the first place, which may not be an option at the point in your life when a transplant could do the most good. The future for my mother seemed uncertain at best.
My mother always embraced life. She never had a cross word for anyone, save perhaps her mother, an almost caricaturishly nasty person who, among other things, stole an inheritance from my mother that my great-grandmother had intended for her. Even then, mom preferred simply not to deal with her or talk about her, rather than express bitterness. She moved on about it better than I ever did.
Mom could be infuriating at times, and so distracted and scattered as to make having a serious conversation sometimes difficult. But she was a giving and wonderful person, and made friends instantly.
She spent a good part of her later life working as a home-health aide and in similar professions. She took care of one client, a long-time invalid with a progressive disability, for decades. She knew perfectly well what the end of life looked like, and it didn’t scare her. She didn’t keep up a brave face. She just didn’t want any pain.
She asked my oncologist, to whom I’d brought her for a second opinion, “How would I die?” He was taken aback for a moment, and then kindly explained the sequence of organ failure and resulting death. (I disagreed with her initial oncologist’s treatment plan, expert patient that I was, having gone through treatment in 1998 for Hodgkin’s lymphoma. She was eventually treated at the Seattle Cancer Care Alliance, where she received arguably the best care in the world.)
Years into her progression, we thought she was doing well, when she suddenly took a turn for the worse that her doctors couldn’t explain. It looked like we’d lose her.
I had a terrible cold, but drugged myself up with antihistamines, washed my hands carefully, and touched nothing. I was snuck in through the collusion of hospital staff to see her. We talked. She felt poorly.
She had the world’s best nurse. So good, I scarcely believe she was a real person. The nurse shuffled her shifts to spend more time with my mother at the end. I have never had visitations from angels, but as secular as I am, I almost heard wings fluttering. That is the sound of extreme compassion. It was fitting that mother, who ministered so well to others, received such good care.
The morning my mother died, I wasn’t with her, but my father, sister, and brother were. I had been there the day before. There was no specific explanation as to why she was going. She had asked us not to use extraordinary means to extend her life. But it seemed to me that she had chosen to pass over, through whatever means she did, and was leaving of her own accord. I shouldn’t have been surprised. As I say, she was an extraordinary woman.
The evening of the day my mother died, I wound up in the Emergency Department, several floors down from where she’d died. I had what was likely strep, which had exploded in severity that day, suddenly increasing right after 5 p.m. I struggled with my grief and the pain.
When a nurse asked me, hours into my sitting in examination rooms, to rate my severity of pain, I said, “10.” I told her, “I have had radiation therapy on my throat and internal sunburns from it, and this pain is worse.” She took a scraping to test it.
The hours crept past and at midnight, I found myself in a prisoner’s room. The door locked on the outside, and it had unbreakable windows and a tiny camera in the corner. It was the only room they had left; I wasn’t unruly, and the door wasn’t locked. The ward was full of the evening’s accident victim and those triaged ahead of me, even though I’d arrived when it was calmer.
At midnight, the nurse returned and said that while it wasn’t definitive, they believed it was strep, and I was sent to the hospital pharmacy for steroids, painkillers, and antibiotics. I found out more recently that strep cannot be treated; one takes drugs to prevent two other diseases, potentially fatal, but quite unlikely, from taking hold. But the painkillers helped.
Before this day, if I had been asked, I would have been hard pressed to cite the worst one of my life. But now I have one.
But I clutched to myself a moment from the day before, when I saw my mother for the second and last time in her hospital room. I was visiting with my father and sister, and my mother seemed beyond words and comprehension. We talked to her, made sure she had what she needed, but she couldn’t respond with words or actions.
Eventually, feeling as awful as I did with the incipient strep, I made to go. My mother raised her arm and croaked out, “I love you.” I didn’t know she could still talk and am not sure she spoke again.
It was the best moment of my life.
Audi Fleishman passed away April 2009.