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Five months ago, I was loath to take any sort of medication. Today, I have a pillbox.
In fact, the way things are going, I fear I’ll soon be declared a superfund site by the Environmental Protection Agency. A seemingly endless stream of chemicals pours into my body, most notably during my every-three-week chemo and immunotherapy sessions. What about the rest of the time? Depending on the day, I might down three or four pills in the morning and one or two in the afternoon.
As best I can tell, my stage 4 cancer hasn’t had any impact on my physical abilities. Indeed, most days, I feel pretty good. I’d always thought death would be easier to accept because of the pain involved and the endless interactions with the medical establishment, which would slowly sap my will to live. But so far, it hasn’t been that way.
That said, my treatment has been accompanied by a litany of side-effects. The latest: In early October, I landed in hospital for two days with a pulmonary embolism, which showed up on one of my regular abdomen scans. I’ve since learned that cancer treatments can cause blood clots, which are the second leading cause of death among cancer patients.
The blood clots are now being addressed by the blood thinners I’m taking. Still, their arrival has been a wakeup call. Before, I imagined I’d know the end was coming when my treatment plan no longer thwarted my cancer’s growth. But thanks to the blood clots, I can now imagine going to bed and not waking up.
End Game. Few topics are taboo these days, but sex and dying are among them. Yes, there’s plenty of chatter about sex. But not many folks talk in detail about their own sex life—thank goodness.
Similarly, there’s a fair amount of talk about death, but not many who are dying openly discuss their own demise. In this case, however, I think we’re poorer for it.
This lack of discussion partly reflects the nature of death. Some folks go suddenly—the result of accidents or heart attacks. For others, death is accompanied by cognitive decline, so they’re in no shape to articulate their thoughts about their own demise.
But as of now, I’m fully aware of what’s happening. Why don’t others in my position talk about their death? Is it denial? Shame? Fear?
Truly finite. We all know our time is limited. But my time is more finite than most, and that—I like to think—brings clarity about what’s important. I don’t want to waste time on life’s hassles, or allow my days to be consumed by anger or despair, or spend time with folks I don’t care for.
Instead, I’m anxious to make every day a good one. For me, that means doing work I love, helping others, and spending time with family and friends. In fact, I think this is the way we should all strive to live. Why wait for a terminal diagnosis to focus on what’s truly important?
Will I ever stop working entirely? Probably not. I feel like I’ve done enough. Still, I’d love the time to do even more.
Unwanted silver linings. I’m not going to claim there’s an upside to dying. If I had my druthers, I’d much rather be doing something else with my time.
Still, when folks learn that I’m dying, their behavior changes. They suddenly become awfully nice, they start calling out of the blue and they might even try to visit. This includes people I haven’t seen or heard from in ages.
Got something you don’t want to do? As I’ve discovered, you can tell folks you’re dying and you’re immediately off the hook. This includes dinner invitations, jury duty and visits from old colleagues you never liked.
Every so often, I’ll even “play the C card.” I’ve done so perhaps a dozen times, including with customer service reps who were being unhelpful and with contractors who were dragging their feet. I’m not saying I’m proud of this. But it sure is effective.
Mr. Clements, I read your article in Feb/March 2025 issue of AARP. “No Retirement For Me “ I was very moved by what you wrote and I feel for you and your wife with your diagnosis. I pray for you and send up love. My husband is an author as well. If you have time, look up “W. R. Benton” on Amazon. Bless you Sir.
I also just read your AARP article. You have made a positive impact on many. Years ago I was so impressed with your practical no nonsense financial advise articles that I shared some with my two daughters. Also gave them a link to your website, to refer to when I am gone. I am praying for you, God Bless Mr. Clements
I distinctly remember this famous quote from the book “Tuesdays with Morrie”:
“The truth is . . . once you learn how to die, you learn how to live.”
Morrie talks about a Buddhist philosophy that every day, one must ask the bird on his shoulder if that day is the day he will die. The philosophy serves as a metaphor to remind him that his death may come at any moment and every day is a gift.
There have been a few but not many end of life self chronicles; one that springs to mind is Christopher Hitchens not so long ago. Perhaps more typical is the spouse’s story, and I’m in that category. My wife is in at-home hospice,dependent on 24-7 care for all ADLs. I keep friends and relatives up-to-date on how it is going. Paying for this and trying to plan for my overdue retirement – delayed so I continue to get a paycheck that helps with the expenses – is a story in itself, but one that is not uncommon, as I know from dementia carers groups.
About 6 years ago, I was helping an author promote her book about end-of-life matters and ended up going to a local “Death Cafe” to try to let people know about the book. They didn’t allow promotions like that there, but I ended up staying and having a great conversation with a group of very nice people, all ages and walks of life.
Over the years, I’ve attended a number of these Death Cafes (it’s a worldwide movement and with the pandemic a lot of them went from in-person to online). It’s not a support group–just random thoughtful people who want to talk about this “last taboo” in order to reduce fear and enable themselves to live more fully. Often their friends and families have NO interest in that (my case). I have found the small-group conversations (3-5 people) refreshing and “normalizing” about end-of-life issues, which we all have faced in some way, even if it’s a pet that died.
Most illuminating was when a young woman from Mexico filled us in on the Dia de los Muertos (Nov. 1-2), her country’s celebration of ancestors where facing the fact of a finite life is baked into the culture. This matter-of-fact attitude is the basis of the colorful animated Disney film “Coco,” which won a 2018 Academy Award, so I guess some Americans moved past that “last taboo”!
November 1st is celebrated as All Saints Day in some Catholic countries, and in several Christian traditions. Halloween is celebrated in neo-pagan religions as Samhain, the day when the dead might be contacted, and as a time to honor those who have died during the preceding year.
Me too. . .stage 4 out of the blue. Had my 2nd chemo treatment this week. First treatment and I got a blood infection and spent 5 days in the hospital. My wife also passed from stage 4 lung cancer two years ago.
That said, I have met one eight year stage 4 cancer victim – sometimes there’s a magic pill for certain genetic variations of cancer. Best of luck to you, it’s a learning curve none of want.
I’m sorry to hear about your wife. Unfortunately, cancer is indeed a learning curve — and it’s also a disease that most folks don’t understand. I can’t tell you how many emails I’ve received offering advice that’s relevant to particular types of cancer, but is completely useless to me.
First, thank you Jonathan for all you meaningful articles, they are very special to very many of us. I eye the end too, even with cancer and still plan to live to 100, never loose hope. However, I also believe in being realistic, but medicine can change on a dime these days, and I have been very fortunate the last 6 years. You are making all the right decisions and keep doing what you love. Except for for 7 hours at the hospital every 28 days, I try to live just like before, and I am very fortunate all my many side effects are manageable. The best to you Jonathan and all the others out there with the C.
I first thought of death 24 years ago when I had my first Cancer it was Lung Cancer and they removed a Lob of my Lung and was out playing golf( my second love of my life) a week later after that I did get my affairs in order and have reviewed them every year since……during that time we have traveled and ate well two of the most enjoyable things in our lives….since we have no heirs we have set up to fund a few Veterans Orgs and I am sure my wife will be debt free so in my eyes all is good when I cross the blue horizon
Your question of why people don’t talk about dying inspired me to reflect on my own experiences. It was only well after my mom’s death (following a 12 year dementia journey) that I really understood that the common dementias (vascular, Alzheimers, Lewy-Body) are terminal diseases. None of my mom’s doctors explained that clearly to me. The educational work of Dr. Tam Cummings in Texas has been a real beacon of light in this area. My mom’s doctors were competent and well-intentioned, but clearly not trained or comfortable in actually communicating anything about terminal disease to my mom or her family. Added to that was the difficulty of getting a ‘definitive’ diagnosis (which is often tricky in many situations, along with the risk of mis-diagnosis). Your example is really helping the discussion, and I hope we can learn to become much more open in our discussions about dying and death.
Sheila:
1) re. It was only well after my mom’s death (following a 12 year dementia journey) that I really understood that the common dementias (vascular, Alzheimers, Lewy-Body) are terminal diseases. None of my mom’s doctors explained that clearly to me.
I’m afraid all of us (doctors, patients, and their families) all share some “credit” for this problem. Notably, I had patients with metastatic cancer, on treatment for quite some time, who were SHOCKED, despite my best efforts, to make them understand they had a terminal illness.
2) r.e “My mom’s doctors were competent and well-intentioned, but clearly not trained or comfortable in actually communicating anything about terminal disease to my mom or her family”
I trained at an excellent program in Boston. No complaints about my education, except ; we were taught to never take away a patients “Hope”. I always felt that this was code to sugar coat, or even lie, about a patients prognosis. My take away was that the only thing worse than no hope, was false hope. So I tried to be empathetic and caring, but not deceptive.
I’m a huge fan of the podcast No Small Endeavor, by Lee C. Camp. Camp is a theologian at Lipscomb University in Nashville, and episode 168 is an incredibly thoughtful discussion between Camp and a close friend of his that was facing the end of a terminal illness.
Keep on fighting, Jonathan! Prayers for improved health!
Thoughts and prayers for Jonathan. Life in no-go zone is quite a challenge.
Retired Oncologist here:
Jonathan, I loved your point about playing the “c” card, and I hope you’ll forgive my sharing a somewhat lengthy anecdote about the kindness of strangers.
I’m a huge supporter of the English soccer team Everton, and for many years I was a regular on their fan forum, but had I never made it over there to see a game in person at their century-old stadium. When I told my online friends about my own terminal cancer diagnosis in 2016, their support was heartwarming and ongoing. And when I reported the following year that then-new immunotherapy had produced a brief remission, they virtually demanded I come across the pond to meet them and see a game while I was still feeling all right.
The welcome I received was essentially a Make-A-Wish fantasy. I was wined and dined and hosted at several homes. They got me tickets for two games — refusing payment for them — and alerted Everton to my situation. At the stadium I was stunned to be introduced to the crowd of 40,000 with my photo up on the message board, and was invited onto the field to take a ceremonial penalty kick. I was given a souvenir autographed ball and a bag of club “swag”, and I got to meet several players afterwards. Everton won both games, and I flew home in an absolute glow.
I understood that the guys and the club went so far over the top because we all thought it was my only visit, but the immunotherapy turned out to be a miracle and the remission never ended. I’ve been back over to England twice more since, happy to see my friends but vaguely embarrassed about having double-crossed them by surviving. I buy dinners and rounds at the pub to make up for it.
A “sin” it appears that you are gladly paying for 😂
What a wonderful story. Thanks for sharing!
Hope you are seeing more of England than the Everton soccer field.
Jonathan, thank you for keeping us updated on your status. Your insights have been very helpful and have me thinking about end of life in ways that I haven’t before.
(I just revised this comment because I realized the original had several surplus words that Jonathan Clements would’ve edited right out. I continue to appreciate the education.)
Jonathan, thanks for another thoughtful article. Highlighting the risks of pulmonary embolisms (PE) is a great service. They are a serious concern as we age. On our recent trip to the Dalmatian coast, one of our fellow travelers, a retired physician, recommended compression stockings for long distance flights, 8-10 hours. We have recently heard of several retirees suddenly suffering from PEs. One person passed away 2 weeks after returning from a trip to Ireland. We should be aware of the symptoms, and keep are eyes open.
I will second the recommendation for compression socks (I like the Sockwell brand). About 10 years ago I had a DVT (deep vein thrombosis) behind my right knee), which was undiagnosed for months because the symptoms were similar to having a metatarsal stress fracture. I’m a runner and so I went to an orthopedist to deal with it. He even had me in a boot at one point. But when symptoms did not improve, he finally referred me to a more specialized orthopod, and the first thing he did was to check for a DVT. Bingo! Six months of warfarin cleared that up. But I now wear knee high compression socks every day.
Throughout my illness, I’ve been surprisingly asymptomatic — other than the side-effects from the chemo and immunotherapy — and that extends to the pulmonary embolism. I didn’t experience any chest pains or breathlessness. Instead, the embolism only got discovered because of one of my regular abdomen scans. I was lucky. We were meant to fly to Paris that night, but instead I ended up in hospital for two days. The flight could easily have been my last.
Sorry to hear of the complications from cancer – pulmonary embolisms are a non-trivial matter. I had a PE incident in 2013 – caused by a sprained ankle in tennis (same as Venus Williams, a much better player!) that ended up two weeks later as clots in the lungs. We had planned to go to France for a 3 month visit to a university but the doc prohibited flying. My wife booked us on the Queen Mary from NYC to Southampton, which was marvelous. An unexpected bonus from the PE.
Can’t imagine anyone handling this any better than you are. You are amazing!
Death was already on my mind today. When I moved to a Continuing Care Retirement Community I realized, at least on an intellectual level, that death would be a fairly frequent occurrence. Tomorrow is my one year anniversary, and until this week, all the deaths have been of people I didn’t know personally. This week, someone I knew well, who appeared to be in good health, died overnight – perhaps from a blood clot. While this may be a good death from the corpse’s perspective, it is a big shock for everyone else. Your intentional process is a gift to those around you.
I’m currently reading “Being Mortal, Medicine and What Matters in the End” by Atul Gawande. This book was published in 2014 and does not address Jonathan’s condition. It instead addresses what happens to the body in old age. There is a description of how healthcare general practitioners do not know how to deal with the elderly patient in the entirety – – – they only know how to treat specific conditions. The body just wears out after a while, and it is a combination of factors that are often responsible for general or rapid decline. There is also discussion about the current lack of gerontologists practicing medicine.
It is not a fun read, but very informative.
It is unfortunate that there are so few gerontology specialists. No doubt it is not as well paid as some other specialties. I’m fortunate that my retirement community has a clinic staffed with a doctor and a nurse practitioner with a gerontology specialty and I have moved my primary care to the clinic.
Thanks for this. You summed up my “retirement” plan in four sentences.
“Will I ever stop working entirely? Probably not. I feel like I’ve done enough. Still, I’d love the time to do even more.”
Thank you Jonathan. There are a lot of topics people don’t want to talk about like prostate cancer and I think that is a shame because lives could be saved if there was more open discussion and people got tested earlier.
Jonathan, your words continue to provide a sort of blueprint for life. We shouldn’t get so lost in planning for a long life that we forget to live well along the way.
Jonathan, thank you for this. It was helpful to me, thinking about spouse’s brother and his ALS. We are going to see him (and his wife) next week. He is in a care hospital now about an hour from their home. We plan to go regularly as we can, it is a 3 hr drive. We think it is important to just be there and walk beside them. I am still praying for you, Jonathan. Chris
Thank you, as always, Jonathan, for your candor.
For people who would rather read about dying than talk or listen, here is a remarkably detailed and helpful book:
Advice for Future Corpses, by Sallie Tisdale.
For dementia, there is this one:
The Forgetting: Alzheimer’s Portrait of an Epidemic, by David Shenk.
Denial of our individual personal mortality and knowledge of the certainty of same is the age-old tension. Thank you for the open discussion and prompts to live thoughtfully. We all know on some level that a next day is not guaranteed for anyone.