Climbing Mountains

Not long from now, the last cancer will be defeated, and even today most with the dread disease survive.  However, many still fall.  This leaves us with one of the toughest questions of life.  How long do you continue to fight, when death is certain?  When does striving become vain hope which drains quality and creates only suffering?  What makes struggle worth the pain; when is it time to yield?

This is a highly personal decision, which each of us can decide only for ourselves.  I have met young people who when faced with incurable disease, immediately decide that life was over, and accepting only comfort, make no attempt to delay death.  I have known frail very senior patients, who faced with an incurable disease, demand every treatment, the end of their lives announced by the compressions of CPR.  Is either path right or wrong? I do not know. Nevertheless, the certainty of these decisions demands that we consider this future, as best we can, before these events occur.

In talking to patients with chronic fatal disease, one image, which seems to help, is that of climbing mountains. If you have cancer, you face a series of medical and emotional events. The first will be the symptoms that announce the disease, such as pain, swelling or bleeding. The next event will be undergoing tests to get a diagnosis.  Then, the first treatment.  Each of these is a hill or mountain over which you will need to hike and each follows the other.

As you get over one rise, and recover from that climb, in front of you stands the next hill.  Often the ascent in front is higher and harder than the one just completed. You must climb it, even though the mountain behind has depleted you.  Sometimes there will be a wide valley or plain between the mountains, where you can rest and heal.  During other parts of the journey, the foothills of one mountain will stumble immediately into the next rising slope.  At times, you will reach the top, just to realize it was a mirage and the real summit is higher still.

When cancer relapses or spreads, the treatment may demand more sacrifice. The side effects are more severe, precious energy lost, time away from family increases, and the opportunity to simply live is taken away. More mountains rise in front of you.

Having a fatal disease means that with time the mountains will get closer and higher, the climbs more savage, and the toll on your life and body will get worse.  We may fool ourselves that even though the disease has relapsed that if we scale the next Himalayan crag, we will finally get to rest.  But, since death defines human life, at some point there will come a mountain which is so steep and so hard and causes us so much suffering, that we will die on its rocky side or plummet into a ravine.

I would not pretend to know when for each disease, each person, each life, the time has come to take off the hiking boots, and sit by the fire.  The range of rising mountains reminds me that the path we tread, at the end of our lives, is a balance between hope’s struggle, and the comfort which some may find in acceptance.  The analogy can test how we measure choices in treatment and in daily life.  For each of us what is important and gives meaning to our lives, is balanced with what we sacrifice.

The question is whether we will have the wisdom to recognize that the time has come not to climb, but to rest in the warm valley.  The peak of Everest is a crystal pure image of awe, power and beauty, but for most, it is a place of fantasy, where there is no air and the wind is as cold as death.

16 Comments

  • gopja
    Well said. As difficult as it may be to see someone make a decision that cuts across our grain, 'tis paramount to ensure that after being given all the facts they alone decide whether to climb or rest. With that comes comfort with one's choice.
    • James Salwitz, MD
      It is, perhaps, the ultimate expression of freedom. jcs
  • Powerful. The metaphor works well in capturing the journey aspects of cancer, as well as the hard part of realizing when to accept, in both the physical and harder psychological aspects. As you note, a largely personal decision, although I think some of the cancer language and general culture tend toward delaying acceptance and excessive treatment.
    • James Salwitz, MD
      Yes, I believe too many patients are never given the opportunity to decline treatment and focus only on living that day. jcs
    • Liz
      I agree about delaying acceptance - look at the language we use "fight", "survivor"... the language of war where things are win or lose and you don't talk about lose in the context of a war.
      • Thanks for commenting. I tend not to like the language of fighting or survival as I don't think it captures the reality of living with cancer, although I draw on elements at times.
  • Kathleen Denny
    From a long-term survivor: Our battle continues after oncologists declare victory and long after we stop coming to the office. I was cured of rare and aggressive cancer at 21, but have struggled because of treatments ever since. Many survivors are ill-served by the present configuration of health care, especially health insurance. I am fortunate to have a wonderful husband and am as active as I can be, but year in and year out I have a list of conditions that make life difficult and appeared unrelated to each other. Only recently have I come to understand the extent to which my treatments are the source, and few docs are trained to follow us through. One ex-PCP made it clear that he considered me a drama queen for suggesting that my problem may be rooted in radical treatments 40 years ago. "Why, you've adapted! You should be grateful to be alive!" Well, yes I am, but no, I'm not malingering. That bump when rear-ended really did disable me for months - I don't have even the muscles that normally would be injured. No, I'm not being negative, but I really can't lift my arms above my head. No, I'm neither lying nor pathologically nervous, but my voice is forced because radiation left my throat so dry it glues together. No, I'm not diabetic, but do drink unusual amounts of water. I have decades of dental problems, as well as a stack of bills no insurance company will cover (not "normal and customary" don't you know?) Oh, and the brain tumor... Due to treatment, I'm more likely than most to develop another cancer. Who knows what I'd decide? Glad for these 40 bonus years, but my compensations are so fragile already, I'm not sure I would go through it all again. And I understand the first-timers, like my aunts of advanced age, who decided that No Treatment was the best choice for them.
    • James Salwitz, MD
      Important and disturbing words. Awareness of the problems of "survivorship" has only become a central issue in the past several years. Like so much of medicine we focused too long on the short term benefits and failed to anticipate the long term cost. Now, especially with great numbers of patients being cured or achieving extended remissions, the need to plan for and avoid chronic complications is increasingly part of treatment planning. Still, we have a lot to learn. Thanks for a tough commment. jcs
      • Kathleen Denny
        You're welcome. Were survivorship issues and followup on the agenda at ASCO?
    • Kathleen, your story is so tragic - yet increasingly common as survivors who have "beaten" cancer live long enough to suffer longterm damaging effects, not of their original cancer, but of the very treatments they trusted to "beat" that cancer. I worked in hospice palliative care for a number of years, where we saw firsthand every day the ultimate ravages of radiation-induced cancer, for example, usually years after patients' oncologists had declared victory over the initial dreaded diagnosis. The price so many pay to survive includes the heartbreakingly debilitating chronic symptoms you describe, as well as those of radiation-induced fibrosis, chemo-related mucositis, heart disease, osteoporosis, chronic lymphedema and so many other debilitating conditions directly caused by treatment. Yet what are cancer patients to do? Refuse the urgent curative promise of oncology, a decision that may shorten life itself, in an attempt to avoid decades of disability? And what can those who work in oncology do to course-correct the systemic urge to cure at all costs as we learn more and more about the late effects of cancer treatment? In hospice palliative care, there is a telling (and disturbing) nurses joke: Q: Why do they put nails in coffins? A: To keep the oncologists out.
  • Bill Wickart
    Jim, you have at least two previous columns with wonderfully upbeat -- but realistic -- outlooks on the terminal path. I refer you to yourself. I found one, but I missed the one I've reposted a couple of times. http://sunriserounds.com/living-for-today-with-cancer/ The one I'm missing focused on a woman with terminal cancer, given 4-6 months. She went for a second opinion -- and received an interview on what she wanted to do with her final days, rather than an emphasis on the spectrum of treatments. I recall that she had several happy years.
    • James Salwitz, MD
      The previous piece was "Celebration" ---- http://sunriserounds.com/celebration/ Thanks for remembering. jcs
      • Kathleen Denny
        Just read "Celebration," and it's wonderful. Thanks.
  • Paula Kaplan-Reiss
    I love the metaphor. It's beautiful and apt. It makes me think of the work I do. As a psychologist, I work with those struggling with infertility....couples who go through endless medical, high tech treatments to have a biological child. Deciding when enough is enough is enormously difficult when there are constant medical advances out there. Yet treatment takes a toll, and deciding to move on from treatment means facing the loss of the dreamed for biological child. It is a type of death (including miscarriages) that is often not recognized by others. No one is perceived as sick. The loss is often private. Helping someone up the mountains, to take time to rest, to simply enjoy the view, to choose another vista, or to grieve missing the summit is all difficult but necessary work for compassionate professionals such as you. PKR
    • James Salwitz, MD
      There is a support group which meets at my church for mothers and fathers who have suffered through miscarriages. Their grief is real and often not appreciated by our society. But the reverse, as you note, to push endlessly for something which may not be possible, can have a terrible toll. Thanks for your thoughts, jcs
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