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Cancer Like a Concentration Camp: A Lesson for Caregivers
The following is a true story. Only the names have been changed.
In "The Emperor of All Maladies", Siddhartha Mukherjee introduces the analogy of cancer and concentration camps by discussing author Primo Levi's writings, in which Levi argued that, "if no life existed beyond the camp, then the distorted logic by which the camp operated became life as usual":
Cancer is not a concentration camp but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself: it subsumes all living. The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away. Every last morsel of energy is spent tending the disease.
In May 2009 a very close friend called to tell me her father Alex, a 70 year old man in good health, had been diagnosed with unresectable stage IV non-small cell lung cancer (NSCLC).
For Alex, and for his caregivers-- his wife Nadine and their daughter, my friend Cindy-- the race was on to find a cure. So too, for all of them, was the intense and complete preoccupation with his cancer, using 'every last morsel of energy' to the unimaginable detriment of their entire family.
Right away it looked bad: the US National Cancer Institute's SEER statistics for cancers of the lung and bronchus offers a grim prognosis: for metastatic disease, the relative 5 year survival rate is a miniscule 3.9%.
The health care network to which Alex belonged utilized the clinical practice guidelines for stage IV NSCLC issued by the American Society of Clinical Oncology. Assigned an ECOG/Zubrod score of 1, he was considered a good candidate for initial palliative radiotherapy for symptom relief followed by platinum-based combination chemotherapy.
Yet, just four months after his diagnosis, Alex made a decision that stunned friends and family. A year later, in early September 2010, this soft-spoken Vietnam vet in retirement after a career in the automotive industry granted me a phone interview.
Ross Bonander: Alex you were initially diagnosed in May of 2009?
And this was out of nowhere?
This was out of nowhere, it sure was.
I think Cindy told me that one day you just collapsed, is that right?
Let me give you the whole rundown. My neighbor had a chainsaw, and my other neighbor sees this and says "Gee I could use that" and next thing you know there's four of us and over the course of the morning we cut down 18 trees. Later we're tossing the branches into a trailer when I feel my back give out.
Had you had back problems before?
No. Nadine convinced me to see a doctor who said it was a bad back and gave me muscle relaxers. So this goes on now for four or five more days, and then one morning I lean over to pick up a pair of shoes and the muscles in my back seize up. I drop to the floor and I can't get up. I'm down flat.
While Nadine calls the advice nurse, I roll onto my stomach and pull myself up, and once I got onto my feet, I could walk. Nadine tells the nurse this and she says "You better get down to the ER." So while Nadine got dressed I relaxed in our Lazyboy, but when she was ready I couldn't get out of the chair!
At the ER, I fell every time I tried to walk, so they admitted me.
And they began running tests?
Started with X-rays. Showed nothing definitive.
A bone scan. Nothing definitive. Then an MRI, nothing definitive.
This was over a Tuesday, Wednesday and a Thursday. You know, they have to schedule them, and one day a machine wasn't working et cetera. Finally, Friday morning they did a CT scan. They found a mass behind my shoulder blade and told me "You have lung cancer."
Were you at all expecting that?
Oh My God no. Total unbelievable shock.
What did you know about cancer up to that point?
Very little. Virtually nothing. Cancer was something other people had.
So when did you learn the staging?
I was discharged but the next day they called saying they wanted to do more CT scans. Cindy took me. Now about the following Wednesday we had an appointment with a cancer doctor.
You had a good four or five days to pretty much be scared shitless.
That's right. And we all spent it on the internet, trying to learn as much as possible.
And how did that go?
Not well. Then on Wednesday, Cindy and Nadine were with me in an exam room, the doctor came in, sat down and said "It's stage IV." That was on May 20 give or take a day.
How much time was there between diagnosis and treatment?
Well about June the fifth I started 10 doses of radiation. See, when my back first gave out, I fractured the L1 vertebrae. The cancer had left the lungs and had started to grow at the L1. So the radiation shrunk that tumor a bit, helped with the pain. I didn't start chemotherapy until July 9.
How was that?
It seemed to go OK. We had company and we went to dinner with them that evening. I had a second round three weeks later.
And how did that go?
Terribly, terribly bad. I didn't know you could feel that horribly and not be dead. Vomiting was my worst problem. It was so violent it took me off my feet. I lost 35 pounds. I was so sick, Nadine started sleeping on the couch and each morning the first thing she'd do is check on me to see if I was still alive or not. Second thing, was ask "How many times did you vomit last night?"
They wanted to do six cycles of this. I said no. I said "I'm done."
OK now this is crucial: You had stage IV lung cancer and you were shutting down treatment. Were you fully aware of the consequences of that decision?
Ross, my quality of life was non-existent. I had developed ulcers, and coupled with the vomiting, that got me readmitted to the hospital. I was so deathly sick that I didn't think I was gonna live, and quite truthfully I didn't want to live.
That bad. If I'd had a handgun I woulda shot myself right there. It was unbearable.
So the decision not to pursue treatment wasn't a difficult one?
Not for me. From October on I started to feel good. I gained weight. In January I started playing Bridge again.
For Nadine and Cindy however, the stress did not ease up, it just changed colors. What had been a wait-and-see game sprinkled with hope became a waiting game played on eggshells. New challenges arose, new worries: would this be the last Christmas with dad? The last grandchild's birthday? The last this, the last that? Every event became loaded with that foreboding potential. Nadine faced an uncertain future now that she would most certainly be a widow soon. Cindy's attempts to juggle caring for her dad, working part time and raising two children overwhelmed her; one night, entirely out of character, she got a DUI.
Any recent scans?
I had a bone scan within the month. The cancer is spreading.
Were you a religious man?
Has anything in this process changed that about you?
Have you second-guessed your decision?
Oh sure. It's gone up and down.
How do you feel about the future right now?
A day at a time.
You seem to be at peace with your decision.
I mentioned quality of life. Last summer my quality of life was zero.
That September we had an appointment with a hospital psychologist. And she tells me, in so many words, that I had had a choice all along about treatment. Of course I knew that, but I wasn't treated that way. I was rushed into treatment. I didn't know I had options. I told the therapist, "If we had had this conversation three months ago, I would have made some different decisions."
But you're hit with this so quickly. And there's so much to absorb. You're at the mercy of your doctors. With the diagnosis that I had, they were saying "The chemo will give you added months to live."
Well, if your quality of life is going downhill and you're feeling like shit, months don't mean anything. They lose all value.
In October last year I had more radiation on my left hip. The cancer had gotten there and the bone was badly damaged and the radiologist was concerned that the bone would break.
At that time I looked the radiologist straight in the eye and said, "You've been there, you've done this, gimme your best guess." She said months to one year. Well the year's coming up so I'm gonna get the year out of it.
Have you been unhappy with your doctors?
The medical team … they're frustrating. You really have to fight to get a word out of them. I mean, you've seen enough patients, you have enough history to see how patients react, you've got the data. You don't need make it like we're all going into this blind.
And that's been your impression?
My impression has been that the doctors talked and acted in a way that ... that prevented them from having to be straight with me.
I thought about you quite often last Christmas. At odd times. I'm watching TV and I see an ad for Budweiser, and it's very Christmas-y with the warm lights, the snowfall, the togetherness of the season, and suddenly I wondered, 'What if I knew this was the last time I'd see that ad, the last Christmas? Never again?' It was terrifying.
That happened to me more in August and September when I was still sick. My sister-in-law came out on Labor Day weekend a year ago, and we had a barbecue, we were on the deck, my hair had all fallen out, I'm bald as a cue ball and Nadine wanted some pictures. So we did that and Nadine had prints made and … I couldn't stand the pictures. I couldn't deal with them at all. And the reason, I came to realize later, was I was afraid that was gonna be the last family picture.
You with no hair, looking sickly—
Right. And that wasn't me! It isn't who I've ever been except for a couple short months of my life! I've lived a long full life; I didn't want that image outliving me, representing me in any future family album. THAT was terrifying. Very terrifying.
Cindy tells me you have your affairs in order.
Everything's in order, yes.
Was that a difficult process?
Not particularly. We had time to do it. So when I do die, it should be a pretty seamless transition for Nadine to continue on.
Last summer when I wasn't feeling well and wasn't sleeping, my mind would race, what can I do to try to make Nadine more comfortable, make this transition easier for her, my mind would just race wildly. But that's all passed now, everything's down in black and white.
And you've started hospice.
I've had hospice since January.
What's your take on them?
Outstanding organization. Wonderful to me and my family. And they're not just about dying, they're about living too. The big thing, when they came on board we talked about travel and stuff like that, and the doctor says, 'Why aren't you traveling?' and I say 'I can't' and he says 'Why? What's stopping you?' And with those encouraging words, we did just that. We've been to see friends in California, Seattle, and Minneapolis so far this year.
What the doctor was saying is hey if you want to travel, do it now, do it before you get any sicker. Their approach was, they see sick people every day, so if you are able to get out and do things, go out and do them. They have been very positive.
Almost as though they've 'seen enough patients and have the data' and are actually doing something with it.
Yes. In hospice they don't pretend to be blind.
Before hanging up, Alex and I agreed to a follow-up phone interview in about a month's time. Tragically that interview would never happen.
Just two weeks after we had talked, I was at my computer when my home phone rang. I let the machine pick it up. It was Cindy.
"Hey Ross can you call me? This morning my mother died."
Shortly before Alex was diagnosed with cancer, Nadine had had a heart valve replaced. Apparently, the valve was contaminated with a microscopic fungus. If she experienced any symptoms from this growing menace, the caregiver in her buried them. Alex had cancer; There was Alex to tend to. There was cancer to tend to.
Then one night a very high fever convinced her to go to the ER. Two days later she suffered complete organ failure.
It was unthinkable. It felt like a bait-and-switch, which is why I structured this article in the same way. All the focus had been on Alex; nobody, including Nadine, focused on Nadine.
Arrangements for her services fell to Cindy, who also assumed the role of her father's sole caregiver, serving in that role until Alex died, peacefully, six months later.
Less than two years after that, my dear friend Cindy, whose DUI was a harbinger of a growing chemical dependency that nobody heeded, died in her sleep of an accidental overdose. She was 41.
As Mukherjee wrote, cancer bears that quality of annihilation in how it "subsumes all living," creating an alternate reality in which the preoccupation with the disease is so great that "the world fades away."
While so often true for the cancer patient, it is far too often true for their caregivers as well.
Alex had commented to me that hospice was concerned not only with death but with life. We should regard caregiving in the same humane and uplifting way.