Yesterday, as part of a seemingly endless project to cull and organize my personal papers, I came across several items of particular interest. One of these was a blue notebook with several pages of Lee’s handwriting that I had not looked at carefully until yesterday.
The notebook looked like Lee had intended for it to function as a medical journal to document her treatment regimen following the diagnosis of pancreatic cancer that would take her life. While this journal is quite short it was unmistakable to me from Lee’s very first entry that these chemo treatments would soon prove to be intolerable. And this realization must have occurred to her, too, and in very short order, as evidenced by the fact her journal contains but a handful of entries before terminating abruptly. Approximately six months after the date of her last entry, Lee was dead.
By the time I closed the cover and gently replaced the notebook atop the large pile of papers I had designated for yesterday’s review and sorting, I was emotionally roiled by the thought of her quiet suffering. I also thought about how Lee, despite having by then experienced more serious medical problems in her lifetime than ought to be permitted, simultaneously remained one of the most positive and upbeat human beings I have known.
While there eventually would come a point in the course of the disease when Lee would no longer be able to mask its extraordinarily painful and debilitating effects, trying would remain part of who she was to the very last. I was not surprised to discover yesterday that she must have taken pains to spare me from sharing her suffering for as long as she managed. It was just like Lee always to put the feelings of others before her own, and me most of all.
***
Another document I came across yesterday for the first time was a medical handout describing an antimetabolite known as gemcitabine, which was the primary ingredient in Lee’s pancreatic chemo cocktail. The handout informed that antimetabolites interfere with DNA production, which stops cell growth and division. “Because the cells cannot copy their DNA, they cannot properly divide, and thus die.” Or, at least according to theory. Based on product marketing, and putting aside three pages listing “possible” side effects, including deleterious effects to lung function, neurology, urine production, blood flow, human skin, and reproduction, it ought to have been a veritable “walk in the park” for Lee to be restored back to good health.
The truth presents a far different picture: pancreatic cancer is a stone-cold killer. The average survival time is between three and three and one-half years. In rough percentages, the overall 5-year survival rate is about 11%. In a best case involving a localized cancer that has not yet spread, the five-year survival rate is only around 42%.
I hate that modern medicine peddles false hope when the overwhelming statistical evidence points to a contrary result.
Shortly before Lee received the diagnosis of pancreatic cancer, she had been battling colon cancer. The same doctors who spoke to us with such confidence and positivity at the start of Lee’s colon cancer treatment, never once mentioned that there was small statistical risk she might be allergic to the standard chemotherapy drugs.
When Lee had terrible reactions to her treatment, the doctors had to terminate the chemo. Weeks passed.
Lee got frustrated when her doctors largely ignored her repeated complaint that she was having difficulty catching a full breath. Of course, theoretically Lee’s condition should have rapidly improved once chemo was discontinued, yet hers did not. To the contrary, for a couple of months her overall health continued to decline, and she had to be hospitalized on multiple occasions. Even in the hospital she continued to lose weight and her blood oxygen level fell dangerously low, requiring that she be given oxygen and preventing her discharge. Had medical personnel identified the blood oxygen issue with greater alacrity they might have started taking Lee’s complaints seriously much sooner than occurred in actual practice.
Instead, for what seemed to me like the longest time, Lee’s primary doctors acted mystified by her condition. Finally, it was an infectious disease specialist who stopped briefly to examine Lee while making her rounds, who first suggested that Lee undergo genetic testing. The results revealed Lee was one in a hundred for whom the standard chemotherapy treatment is straight poison due to the patient’s inability to metabolize and rid her system of it. In Lee’s case her prescribed chemo cocktail not only built up but remained in her system, and the attendant and well-known toxic effects of chemo simply accumulated within her small body with each additional “treatment.”
By the time Lee was fit to be released from the hospital back in the late Spring of 2019 she had been reduced to a sad shadow of the person I knew and loved. That same Summer she was forced to take an early retirement, being too physically depleted to adequately perform her job any longer. For several weeks after coming home, she needed a walker to ambulate. I would have to escort her on short walks up and down our block, which was about as much exertion as she could manage. I had to assist Lee to climb a few stairs. For a time, Lee was even too weak to garden, and thus denied her great warm weather pleasure. After what had been a very rough six month stretch for Lee, the following Summer might have felt like the worst time of her entire life.
Yet, being amazingly resilient, with hard effort Lee had managed to regain much of her former strength and vigor by the end of Summer. Finally, as Fall approached, we celebrated by dining out with our friends for the first time in many, many months.
A few weeks later, Lee’s first routine follow-up examination since the prior Spring revealed she now had contracted pancreatic cancer.
***
I am convinced that the events surrounding Lee’s failed colon cancer treatment contributed mightily to the emergence of this deadly pancreatic cancer. Among other things, after Lee died, I discovered that the same genetic test which finally had explained Lee’s adverse reaction to chemo treatment for colon cancer was not ordered for crass economic reasons involving medical insurance. I have felt anger that the availability of this testing was never disclosed to us by Lee’s doctors before she underwent a treatment for the colon cancer that made her deathly ill. Given Lee’s poor track record for different cancers and generally poor responses when it came to prior cancer treatments, as well as her long history of other exotic illnesses, I would have demanded such testing and happily paid for it out of pocket, simply as a precaution against what did occur. It simply had never occurred to either one of us to ask whether such a test was available or might be useful.
It’s only my sense of things that the two cancers were connected. However, I am convinced that Lee’s weakened physical state and severely compromised immune system following colon cancer treatment and the resulting chemo toxicity issues she experienced undoubtedly increased her overall risk for new illness. Worse, I know she suffered needlessly.
***
I saw a manilla envelope addressed to Lee with a postage stamp dated May 28, 2020, just over one month prior to the date of her death. I did not recognize the sender.
The envelope contained handwritten forms containing many names, including my name. After some brief study I inferred that Lee must have been researching a family history of her family. This envelope must have arrived around the same time that Lee came home after her final hospitalization. In the tumult of her last days at home, this envelope had sat unattended until just yesterday, when I finally opened it.
I could only shake my head in amazement that Lee, in the throes of her final illness, had sought to create a legacy to honor her family. I will proudly present these materials to her brother, Paul, with my hopes that he will honor his sister by finishing the task for the benefit of his own children and theirs.
***
I came away from yesterday’s reorganization effort with a mixture of feelings. I had felt sadness while revisiting Lee’s personal travails. I had felt anger at revisiting the circumstances that had caused my wife such unnecessary suffering. And I felt joy remembering my kind and selfless woman, who made the effort to honor her family when a lesser individual would have been mired in paralyzing self-pity facing the imminent prospect of her own death.
Finally, it’s going on three years since Lee has been gone. Perhaps at last I am prepared to cull and reorganize the various pieces of my life, and in the process to face up to the hard fact that my life’s journey continues, albeit solo. By now I have experienced feelings of sadness or anger relating to Lee’s death so many times and under myriad circumstances. I feel as if the passage of time itself has helped to erode the harshest edges, or, at the very least, to smooth and round the edges to make my feelings more manageable today than they were even in the not-too-distant past.
At the same time, my feelings of joy when I think of her have not diminished in the least. Indeed, with each passing year they gain added luster in her absence.
