Friday, May 19, 2017
Living...and Dying...With Cancer...
As many of you know, my wife of 38 years, Elaine, passed away recently from the ravages of cancer.
She contracted "aplastic anemia" from an unknown source almost two years ago. We were told there was no cure, however there were available treatments to be had at the foremost treatment center for that disease on the West Coast, Scripps Green Hospital in La Jolla, California. After much begging, pleading, haranguing, threatening and harassing, our HMO agreed to cough up the huge funds necessary to pay for such treatment (more than $1.5 Million for drugs and medications alone at last count). And since then we've been making the journey back and forth to La Jolla on more than two hundred occasions to obtain a hoped-for cure.
But no luck.
Aplastic anemia, also known as "bone marrow cancer," is a virulent, voracious, mean, nasty, horrendous and cold-blooded infection, that attacks all ages and races and religions and genders. It tends to afflict those under the age of 25 primarily, but, as with Elaine, can burden those of any age. It is also among the rarest of terminal illnesses, affecting less than 600 people annually in the United States.
She was fond of saying, "I can get a disease that only affects 600 a year in the U.S., but can't win the (expletive omitted) lottery!"
It is among that class of ailments known as "autoimmune" diseases. That class would include multiple sclerosis, myasthenia gravis, retinitis pigmentosa, rheumatoid arthritis, Guillian-Barre Syndrome, and Lou Gehrig's Disease. There are more than 100 such major ailments, which manifest themselves by one or more elements of the body turning in upon itself. In Elaine's case, one of her bone marrow "T-cells" decided to turn rogue, and could not be corrected by any means her physicians attempted.
During this 22 months we were forced to make the 60-plus mile-each-way journey to La Jolla, often arriving before 8:00 a.m. and returning home after midnight, every other day! Exhausting. But necessary.
As I so often opined to close friends, one had to look at our situation in the "micro," head down, singularly focused, one foot in front of the other. If one looked at it in the "macro," the "big picture," so to speak, one would surely have to put a gun to one's head.
She received more than 400 blood transfusions. She needed more than 80 separate doctors' appointments and home nursing visits. She was forced to undergo more than 20 surgeries, both major and minor, brought on by this dread disease. Thousands of needle sticks. Hundreds of infusions of noxious, toxic medicines that her doctors deemed necessary to fight this disease. Medications that now must be disposed of by county officials so as not to foul the water table.
Aplastic anemia robbed her of her taste, her smell and her appetite, and, toward the end, negatively impacted her eyesight, her memory and her cognitive abilities. In short, it was an all-consuming, life-changing, crippling disease, displacing nearly everything else in our lives.
And yet, she...we...fought it valiantly. And unsuccessfully. During this year and a half-plus, she lost more than 100 pounds. She grew frail. She was fatigued always. Yet, she never lost her sense of humor, nor her desire and zest for life. Yes, she was truly "one-of-a-kind."
We met at a convention in Seattle waaaay back in the late 1970's. She was an R.N., and I was a marketing manager for a medical equipment manufacturer. Yep, one of those "sleepless in Seattle" stories you so often hear about. If there ever was a "love at first sight" situation, this was it.
Thereafter we were almost never separated. We started a business together, ran it together, hired and fired together, worried about finances together, traveled together, had three daughters together, oversaw their education together, and their weddings, and then the birth of their children, and our grandchildren, together. We laughed together and loved together. Ours was truly a match made in Heaven.
And now she is in Heaven.
Cancer is a scourge. Her's was made much, much more tolerable due to the unyielding support and assistance of her daughters, her family and her friends. And friends! Did she ever have friends! Elaine would give you the shirt off my back! She was famous for trying to give folks our stuff if she thought they needed it more than we did. She "collected" people, as did I. We did it together. If you were friendly, you became part of our ever-growing circle of our friends. For years, as an example, we hosted annual Superbowl parties, often attended by 300 people or more. And she loved being that sort of "Earth mother" that gathers friends like a flame gathers moths. The outpouring of grief among those friends, and family, of course, has been unprecedented. It is occurring still. And may not ever subside. I hope it doesn't.
Elaine is gone. This fight was a time given to successive highs and lows. She would at one moment appear quite normal, and in the next tired, short of breath and faint. Toward the end the highs grew less high, the lows more pronounced. Even though I had a year and one-half to try and get used to the idea of her impending demise, learning to live without her will be tough. But I have to try. And if you knew her, so will you.
You've likely heard of the "Five Stages of Grief." I'm past denial, and anger, and bargaining, and even depression to the maximum extent possible, and I'll soon be into acceptance. Writing and pushing "publish" on this blog posting is one of the ways I intend to help begin to achieve that last lofty goal. And I will. And so must you...
Goodbye, Elaine. We will love you, and miss you, always...