13. Tough Choices
When an oncologist starts an appointment by saying, “You have terminal cancer,” the automatic reaction is that you wait for the word, “BUT.” At least that’s what I did. In my case, the BUT preceded news that there was a two-pill-thread-of-hope and the proviso, that neither pill would lengthen my life, but one pill might help with the quality of it by decreasing the pain I would experience getting from here to hospice — the other pill might help strengthen the bones not already weakened by the cancer-nibbling mouse I mentioned in an earlier blog. In order to find out if I was a candidate for either pill, I would need to undergo a bone biopsy. I initially declined the procedure because the pills wouldn’t lengthen the amount of time I have left, and because a bone biopsy is an unpleasant experience. After some thought, and the enticing suggestion that I might be in less pain getting from here to the morphine of hospice, caused me to acquiesce.
I had the bone biopsy. In retrospect, that was the wrong choice — not because I learned I wasn’t a candidate for the pills, but rather because I learned I was.
A little background. When Mr. Wonderful and I feared my illness might be terminal he asked me what I wanted. My response was quick and concise. “To enjoy the Christmas season, to finish as much of my work as I can, maybe start a blog about this, and when appropriate, speak with hospice.” The next part of my answer was delivered through sobs. “If I have terminal cancer, I am not going to wage a fight that I won’t win. I am not going to torture myself or drag our seven-year-old granddaughter through a shit fest. I am going to enjoy the time that I have.” Thinking I might have less pain spending that time was very enticing.
So, I had the bone biopsy.
The news that I was a candidate for the pills was delivered on December 1st and met with a huge sigh because I wasn’t going to be in excruciating pain for months — and then I learned some things that made that moment in time very painful.
In order to get either pill, I would need to: have a consult with a radiologist, undergo an MRI or some other body scan, and have 10 consecutive radiation treatments on my femur and L-1.The treatments wouldn’t change anything, but they might help with pain. While that was being done, the oncologist would need to get approval for the drugs.
Then Tim and I would have to figure out a payment plan. Why, you might be wondering — because one of the drugs costs $12,000 per month. NOT A TYPO — and not something we were previously told. By the way, the pill that costs more than my first car is the pill that’s intended to improve the quality of my life. I zoned out of the conversation and later learned from Tim that a portion of the cost would be paid through insurance and the rest could be paid through a personal loan.
We never learned the cost of the second drug – because I popped a Xanax and Tim suffered a minor stroke that left him temporarily deaf. When we swung back into the doctor’s monologue, we learned that taking the pills would require biweekly trips to the hospital’s lab for bloodwork. Apparently, each drug can cause life-threatening situations, hence the frequent blood-letting.
RECAP: radiology consult + body scan + 10 radiation trips + biweekly labs = 14 appointments before Christmas — the season I really wanted and needed to enjoy.
An important thing to remember.
I was told by an orthopedic oncologist that the cancer in one of my thighs has deteriorated the bone to such a degree that it is structurally unstable and that my L-1 is an even more serious situation — AND I was not allowed to leave the ortho’s office without purchasing a walker — AND I was told to limit my movement — AND I was banned from the upstairs in my home — AND I ate Thanksgiving dinner on my recliner — AND I watched our Christmas tree being decorated — AND I make as few bathroom trips as possible.
TMI — perhaps.
Two weeks later, I was being told that in order to get the super-de-duper drugs being prescribed for a better quality of life I would have to leave my home, thereby jeopardizing my life with countless trips for treatments that WILL NOT lengthen my life, and could in fact shorten it if, for instance, I fell on the way to the car, or if a person fell on me in the hospital lobby — could happen — did happen — on the day of my bone biopsy, but that is a story for another day.
An important thing to note.
The potential side effects of the super-de-duper drugs would require a separate blog to list them all — and I will, at some point in time. If bad luck was on my side, and I encountered any one of them, I could very likely be hospitalized and/or die from it.
A review of my recent run of shit luck helped clear things up. “It’s time we go back to Plan A,” I told my husband who was scrounging the car seat cushions for loose change to help pay the $12,000 monthly pill cost.
“What was Plan A, again?” he mumbled.
“I am not going to wage a fight I won’t win. I am not going to torture myself or drag our seven-year-old granddaughter through a shit fest. I am going to enjoy the time that I have.”
We discussed the options with our daughters who nodded their agreement through tear-filled eyes and went separate ways to deal with the newest reality.
Mr. Wonderful went to the kitchen, put on the teakettle, and offered me a cup.