Letters From Cancerland: On Being Mortal
This month marks ten years since my initial diagnosis of multiple myeloma. The more days, months, and years between then and now, the farther out I am on the branch of mortality. As I told my friend Larry, who was diagnosed with myeloma 13 years ago, we’re both at the point we can hear that branch creaking and threatening to crack.
What an excellent time to read Atul Gawande’s new book, Being Mortal.
Being Mortal is getting a lot of favorable attention, and for good reason. Gawande, a surgeon and medical writer, squarely tackles the disconnect between modern medicine and death. And let’s face it: death is not a topic many doctors are comfortable with discussing. My own oncologist of a decade, with whom I have a wonderful relationship, is distinctly uncomfortable when I have raised the topic of dying. He doesn’t want to have that conversation and prefers to focus instead on all the treatments I haven’t tried yet.
Even Gawande acknowledges that he was well into his medical career before he learned to have “the hard conversation.” Eventually, working with palliative specialists and hospice workers, he came up with a short series of questions to ask his patients:
- What is your understanding of what is happening to you (medically, physically)?
- What are your biggest fears and concerns about what is happening?
- What goals are most important to you?
- What trade-offs are you willing to make or not willing to make?
Those are questions my oncologist has yet to ask me. I am not waiting for him to do so. I need to start answering those questions for my own sense of where I am going with this disease.
I have already scribbled out some lines. I am not willing to undergo a stem cell transplant again. I am not willing to try Velcade (bortezomib) again in any form. And while I have not yet had to put this one to the test, at some point I am unwilling to continue treatment. Period. I do not want to become a patient for whom there is no quality of life as I define quality of life. I do not want to continue a treatment that will beat me down while keeping me “alive,” but not add meaningfully or significantly to my lifespan.
Recently, the media paid a great deal of attention to Brittany Maynard, the young woman with a terminal brain tumor who chose a physician-assisted death as her disease advanced. Whether you agree with physician-assisted death, Maynard’s very public story brought new attention to the topic of death with dignity. Gawande is reluctant to embrace fully physician-assisted death, but he is very much a proponent of achieving a dignified death through other means. And he clearly articulates why and how the modern medical juggernaut may thwart that outcome.
One passage in Being Mortal describes in harsh but moving terms where I am at in my disease:
People with incurable cancers … can do remarkably well for long time after diagnosis. They undergo treatment. They resume regular life. They don’t feel sick. But the disease, while slowed, continues progressing, like a night brigade taking out perimeter defenses.
Those lines brought my reading to a halt until I could breathe again and move forward. I know that night brigade has been working slowly, stealthily for a decade.
I also know that in the end, we all die. My having myeloma just means I am dying faster than I’d counted on in those pre-myeloma days a decade ago.
My goal is not to pretend I am not dying faster, but instead to look ahead – whether it is a year or another ten years – and know that I am making the decisions I need and want to make to bring this amazing experiment called life to its conclusion.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi April, First let me congratulate you on ten years of fighting off this damn disease. I know it is both a physical and emotional battle. I am a caregiver for my wife who is in the watch and wait phase, so I know the emotional burden. I believe everyone wrestles with the thought of dying our whole lives. You are right when you say death is not a popular topic for discussion, especially when you have a serious illness. You made me think of the ancient Greek philosopher Epicuris, who said "death is nothing to us because when we exist, death is not, and when death exists, we are not." Hopefully you will continue to fight and live a good quality of life.
April:
As always,..well said.
Difficult subject, handled with grace.
Regards.
Thanks April, I appreciated reading your column too! Sometimes I think that this whole experience with myeloma over the last five years has led me to appreciate more how elderly people are feeling about their mortality. If one does get into one's eighties, for example, one knows that a natural lifespan will come to an end eventually. These older people on the whole seem to be fairly cheerful though, and I admire them for that. I also admire anyone facing a difficult disease who is trying to come to terms with what that means to them for their own life. And of course I would respect anyone's own decision as to how much is enough too.
I hope that you have many more years writing and sharing with us, and that if you need to try newer treatments, they are available for you, and not so onerous as what you have already had to endure!
You do suggest good books. I took 'Passages in Caregiving' by Gail Sheehy out of the library, but haven't had time to read it yet. Maybe we could get our MB book club going again?
Oh April! You were so spot on it cut to my soul. Definitely hard to talk about, hard to read, hard to think about, but absolutely necessary to come to terms with.
Amen!
Well said, April. You put into words what a lot of us are thinking about. Not an easy subject, for sure, but absolutely no escaping it. Thank you for your insight.
Well said on a difficult topic but one that should not be ignored. The decisions you have made are ones that I often go over for myself. In my experience, doctors are the same as yours on this topic. I see that some people understandably have difficulty accepting this reality. I am not sure that my family and others close to me fully understand the reality of the situation I am in and the branch of mortality I am on. They tell me I am going to be the exception to the rule and have a very long two decade remission, or they will find a cure soon, but as I see it I am on a very average path and, while a cure is very possible, it is likely I will run out of time before that comes to be. Maybe privately they understand the situation, but they do not want to acknowledge it to me because it is more painful for them to accept than it is for me. It is those close to me who are going to have to live with the difficulty of my dying someday and what comes next, not me.
As anyone who has read my postings, I am very skeptical of what is called by many “alternative medicine”. Not always – but often – the strongest advocates of alternative medicine, not just for myeloma but for other cancers and incurable diseases such as multiple sclerosis, are people who I think do not accept the reality of the situation they are in and are drawn to alternative medicine therapies with false promises of cures in the belief they have found a way out.
Thanks April for sharing such a difficult topic. Death is inevitable for us all but having this incurable cancer makes it necessary to understand the end will come sooner rather than later.
I would like to ask why you would not take "Velcade again in any form?" I am currently taking Velcade subq weekly and am not tolerating it very well. I relapsed after a SCT 5 years ago with no maintenance during that time and had done Velcade, dex and Revlimid prior to the SCT and tolerated the 3 drug regimen well.
Keep up the great attitude and enjoy life!
Hello April, thank you for a thoughtful discussion. I have to admit that prior to my diagnosis of MM, death was difficult for me to discuss with my patients. We had no training in dealing with it in med school! However, I learned to listen when women brought it up, and was moved to tears as some embraced even an incurable cancer as an opportunity, even a blessing. Yet as an OB/GYN, I was much more comfortable managing birth.
After the initial shock of the diagnosis we all share (mine in 7/2011), I became more interested in death and dying issues, personally and professionally. I've attended several "Death Cafés". And I gradually became aware of the positive aspects of learning from my disease, enjoying life more than ever, and increasingly living in the moment. I also realized that I lost my fear of death. No one can claim they know what happens after death, but I believe there is another reality to which we transform through some amazing process.
Now I have gone through the gamut of approved MM treatments, and just completed my second auto transplant followed by CAR-T immunotherapy, just today! I am on sabbatical (intense study and deep rest), and am fascinated by the details of immunotherapy. I am convinced some version of immunotherapy holds the key to the Holy Grail of "cure" of MM, and many other malignancies.
So we all benefit from learning about our disease and treatment options, which need to be individualized. I believe that we benefit from focusing on the present, and reduce our worries about the future. Thy Will be done is my motto. May you enjoy life to the fullest; quality is more important than quantity. Best wishes to you! Jan
I appreciate the observations about "the hard conversation" we all must have regardless of our diagnosis. Dealing with elderly parents and an even older aunt, I am not sure the conversation gets any easier with age. One of those three is willing to talk about death, one is semi-willing to contemplate it, and one pretends it isn't happening!
Arlene asked why no more Velcade? I did several months of Velcade injections in 2013 in response to a relapse. I "tolerated" the Velcade in that I had only limited redness and itching at the injection site. I felt mediocre to lousy (fatigue, nausea, general physical malaise) the entire time I took the Velcade, and it had only a moderate positive effect on my lab numbers. After 5 or 6 rounds (and I want to say I did 3 weeks once a week injection and then one week off), I told my oncologist to take me off. The diminishment in my daily quality of life was not worth the limited benefit I was seeing. Looking down the road, I'm not interested in Velcade again. Revlimid has been no pleasure cruise, but after 9 cycles of it, the side effects are greatly diminished. I may be hitting the end of its effectiveness in me, though, and that always raises new questions in the treatment arena.
Eric H. touched on a topic that is near and dear to my heart: the well-intentioned, well-meaning, caring friends and family members who say you'll be the exception or there'll be a cure soon. Depending on the day and my mood, my reaction runs from rolling my eyes to a gentle but firm response along the lines of "this is a terminal illness" to biting my tongue and mentally punching a wall.
Nancy Shamanna -- that book club! Online book clubs are difficult. I am currently in a very tiny one (4 of us: my 2 sons, my daughter-in-law and me) and even we struggle to get emails sent timely with our responses to the latest read. Not opposed, just need a working format!
Hi April - Thank you for your thoughtful column. Ever since I was diagnosed in April 2011 and faced my own mortality, I have been trying to make friends with death. I've read a lot, more Buddhist teachings-related, and I became a hospice volunteer. Aside from dealing with preparations like wills, advanced directives, etc, I find that people don't like the subject of death and end-of-life discussions; heck they don't even like to hear you have cancer! Thankfully I have a wonderful therapist who is also a mindfulness meditation teacher / practitioner and I can talk to him about all of this and it is indeed comforting to open my heart and soul to him on this topic. I haven't read Being Mortal yet but I've been eyeing it, so your review was interesting.
I am about to undergo my first stem cell transplant and would like to ask why you would not do one again. After reading all the information about it and seeing all the potential effects of the drugs, I can understand why someone wouldn't want to do it again. Regardless of my experience with it, I doubt I would do it again just because of the toxic effect of all that on my body. I was clear of drugs for all my life until MM. I am now 67. Even with MM, my QOL has been pretty good because I've only dealt with drug side effects and not MM symptoms so much.
I wish you continued quality of life and a knowing that you are not cancer - you are a beautiful light on this earth!
Kathy T.: I did a tandem stem cell transplant (2 transplants 90 days apart) in 2005. This was as part of a study as to the effectiveness of tandem over single transplants (they are not more effective). The transplants were physically non-taxing for me: I was in relatively good health (well, other than the myeloma) and each time I was home in under 3 weeks. All the same, I would not do a transplant again.
First, I got a very limited response to the transplant -- a bone marrow biopsy 90 days after the second one showed myeloma activity already. So why put myself through a pretty staggeringly amazing and risky procedure for limited response?
My second reason, though, and I am only person I know who has this response (and in fairness, I have never talked with anyone else who did tandem transplants in quick succession) is that I found the second transplant to be psychologically overwhelming. My take on a transplant is that you watch yourself die on paper – watching your blood counts zero out until the transplant takes – and that was harder the second time than the first time.
For me, that went way beyond even what I write about above. It was not about making decisions about dying -- it was about dying for those 10-12 days and hoping, but not knowing, the transplant would be successful. Thanks but no thanks!
April, thanks for another great column. This is such a difficult topic to talk about, but one that I suspect we all think about more than we want to. So thanks for opening the box and giving us an opportunity to each share our own thoughts about it.
My family and friends have reacted just like Eric H.'s. I wonder if we're related, Eric.
I have a little story to share. This summer I was in a weekly yoga class for cancer patients only. At the end of the class, during the relaxation time (my favorite part of the class!), the instructor would talk softly about babbling brooks and blue skies and stuff like that. Most weeks I semi-dozed off during this part of the class. But one week she said something that cut right through my little nap and hit some nerve in my brain: "You control your own destiny."
That snapped me awake instantly. I thought: "What a stupid thing to say to a bunch of cancer patients. We're all at the mercy of our disease. We don't control anything." But that phrase stuck with me and, as I thought about it after going home, I realized that she meant something very different than being in control of when or how we die. What's infinitely more important, and what we do have some control over, is what we leave behind, non-materially, when we die - that destiny.
Thanks again for a great column, and here's to your next decade!
Mike
April - Great column as usual and on a topic that I think we all think about a lot but rarely have the opportunity to discuss with others. Perhaps the most relevant quote I have heard since being diagnosed with MM is "When confronted with your own mortality, you see things differently." Your column certainly bears that out and gives us all plenty of food for thought.
April,
A very thought provoking column. Something in your treatment protocol has enabled you to make it to the 10-year mark. That puts you in some exclusive company, since statistically most patients do not survive that long.
I never had a transplant and have no intention or desire to pursue that path. Your description just reinforced my aversion. On the other hand, I will never say never. If I relapse and that method is offered as a strong possibility of a meaningful remission, I would likely pursue it.
With respect to Velcade, I gather you must have had a very bad experience with side effects. I have been on it for over 5 years and have avoided the PN that many patients experience. Velcade now in a maintenance dosage once every two weeks, combined with 8 mg of dex, is what has kept me in a remissive state. Someday it will no longer work; however, I am riding that horse as long as possible.
I hope that you can continue a full life for many years to come.
Ron
Aloha April,
I couldn't agree with you more. There is no point in continuing life if that life has become too much suffering just for the point of extending life.
I love the questions the author of the book asks. Because of recent experience with friends who have died of other cancers, I have tried to ask those questions ever since recovering from the shock of diagnosis.
I know that I am going to struggle to make it as long as I can until my children are more mature and better able to handle my death. After that point, my tolerance of treatment side effects will go down and I will reach the point of discontinuing treatment. I will keep fighting, though, until the treatment just isn't worth the side effects.
Until that day comes, however, I am going to grab as much life as I can and try to stuff each day as full as I am able. I don't want to die peacefully in my sleep -- I want to skid sideways into my grave with a fishing pole in one hand and tall glass of Guinness in the other.
Thank you for opening up a VERY important topic.
Aloha
Tom
Actually. if you remain in remission long enough - and ten years appears to be the current threshold - the more likely you are to stay in remission indefinitely. So my fingers are crossed for you.
Your column April is profound and the comments are so so deeply moving and helpful. What a wonderful place to come to and find the understanding, concern for others, and great lessons in valuing ourselves. We share this time, this earth, and all the unknown possibilities that lie ahead. I wish you continued health!
Thanks, April, for the wonderful column and to everyone else for all the wise comments. I appreciate them very much. Today I happened to read an article that seems relevant – it was in the Atlantic Monthly – and was by a doctor who doesn't want to live past 75 because (he believes) quality of life diminishes so markedly after that point. Although he does not believe in euthanasia or physician-assisted death, he says he plans to change his own behavior at that point -- no flu vaccine, no screening tests, no treatment for most illnesses. Given that I was diagnosed with MM at age 62 and would be lucky to make it to 75, I think he makes an interesting argument for accepting mortality for the inevitability that it is -- in contrast to the typical medical standpoint.
Ginny D.: Your comment speaks to a trend that is noted and growing among doctors: a greater proportion of them decline extraordinary medical intervention (chemo, radiation, heart surgery) for terminal illnesses because they would rather have better quality of life for fewer days than gain more days at a huge quality of life cost. The article you refer to involves a doctor who takes it one step further.
Jim in SD: It's not been 10 years of remission. In the 3650+ days since my diagnosis (and toss in another 80+ days for the estimated 6 months my oncologist thinks the myeloma was active but not yet detected), I have had less than 150 days (and that is being generous) where I was in remission by all standard measurements. That means I've been in remission for 4% of the decade. Post transplant, my oncologist and I both agreed not to treat the myeloma unless it got more aggressive -- which in my case it shows aggression by tanking my physical well-being, not my labs. I've been cycling through relapses more frequently the last three years, compared to a fairly benign prior seven years. Hence my observation that I am getting out onto the thinner part of the branch of mortality. That is why the Gawande quote about the "night brigade taking out perimeter defenses" rang so true for me: that is exactly what the myeloma has been doing in me.
Tom Shell: Why am I not surprised about the skidding sideways with a fishing pole and a Guinness comment? May you achieve that goal!
April, Many things in your column rang true to me. And ironically, I was also part of a clinical trial regarding tandem auto transplants in 2005. Luckily, I have been in complete remission ever since. So of course my perspective is a bit different. The first few years after my remission, I agree with a previous comment that it was uncomfortable when friends and coworkers would congratulate me on being "cured" when this wasn't necessarily true. However, after almost 9 years of complete remission, am I being naive believing that, indeed, I may be cured? I am curious if others in long-term remissions feel likewise.
I want to comment about the doctor's decision. I was diagnosed with mm in 2011 (with MGUS in 2003) and had a stem cell transplant in 2012. Within 3 months of my transplant, I went back to work full time. I am 72, still working full time, and doing whatever I want to do. I am exercising more than ever. I have an uncle who is 83 and still helping his daughter with her track team at school. His quality of life is very good.
I don't think we can pick an age to give up trying. I believe it depends more on what life is handing you and how you are feeling. When I reach the point that my QOL is going downhill, I will probably give up. Until then, I intend to continue getting checkups and flu shots. I hope for that doctor's sake he lives a lot longer than he thinks he can with a decent life.
All my fellow MM'ers – April did us a big favor with her column. Thank you so much.
I try to speak at least one time per week with my husband, kids, siblings, or friends about dying. Most of the time I start with a joke about the subject. After two years, people around me are more used to it and it is less and less a no-go area for them. I wear a wristband with my name engraved in it next to the text DO NOT RESUSCITATE. I am 57 and enjoy life to the full. In my case, that is an average of 4 hours a day that I really feel good and can do almost normal things, like walking two miles, painting, or preparing a meal. I have to talk about dying and death not because of me, but because of all my loved ones. They all think if somebody can beat this beast, it is me. So I have to prepare them, stimulate them, and let them see that life is beautiful even in case I will move on to another.
I can understand anybody who thinks enough is enough, let nature take its course. I am not afraid of dying. I probably won't like the last half hour, but I will deal with that if it is there. I am more afraid of leaving my loved ones in despair. That's why I want to talk about it and just make it a normal subject that pops up in a good, open way.
Take care and keep up all the good ways to deal with mm and it's final outcome.
April,
Thank you so much for your thought-provoking column. As my husband's caregiver, I think that this topic is the hardest one that he and I face, and probably from different perspectives.
I try hard, but I don't think that I deal with it well. In fact, we don't really talk about it – and that probably has a lot to do with me. It is my greatest fear: losing him, going through another 40 or 50 years on this planet without my best friend and soul mate. It was supposed to be our future: children, grandchildren, and twilight years. And now it is all so uncertain. These are my words that go un-voiced. Every day it's a "strong upper chin and can-do attitude", but in the dark recesses of my soul I want to cry out and rage against multiple myeloma.
Acceptance, graceful dignity – I wonder if these are even possible for caregivers. I certainly want all these things for him. In fact, I want anything for him that would make this journey easier, anything to give him peace, but I can't see myself accepting or letting go. My only way to cope is to pray fervently everyday that a cure will be developed in time to save him, and to 'save' us all, patients and caregivers alike.
This is one of the best posts and special thanks to April for that. Great to see so many reactions. When QOL drastically goes down, it is time to wind up all treatment options and prepare to take off to the next ... (whatever each believes in) peacefully. Need a lot of courage to make that decision.
I was out of town for 3+ days (at an international percussion convention – all drumming, all the time) and am reading these. The depth and thoughtfulness of the comments reflects the depth of our online community. This is a hard discussion and a hard topic, yet one every human faces. Some of us just face it faster than others.
Excuse me while I go crash.
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