Reaper, Stay Away From My Door
When we are diagnosed with multiple myeloma, we find that we have to confront our own mortality. Since it’s something we all face, I thought I’d share some thoughts on the topic.
Some may find this a bit morbid. I don’t blame them. Nobody really likes to talk about death and dying. Especially their own.
I prefer to write about more cheerful topics, but one can’t be cheerful all the time. Today’s not particularly cheerful either for that matter. Like John Phillips wrote, “All the leaves are brown, and the sky is grey.”
Way back in my newspapering days (we’re talking ‘60s and ‘70s here, folks), we loathed a couple of terms about death and weren’t allowed to use them. One was “died unexpectedly.” What? Was he or she expected to die at some other time? Or so the thinking went. Another was, “died prematurely.” As far as I’m concerned, whenever I pass on, it’s going to be premature; most others probably feel the same way. Instead, we always just used “died.” None of this “passing on” stuff (as I just used) or whatever euphemism.
I really don’t dwell on my mortality, but it got on my mind because I’ve read many articles recently about those with multiple myeloma who have died and about younger people getting the disease. Heck, it’s one thing to get myeloma in your sixties or later. It’s quite another to be diagnosed in your thirties of forties. Or even your twenties.
The likely shortened life span that we get from myeloma bothers me. Not just for myself; it also bothers me a lot when I read about people whom the disease takes quite quickly. What a waste.
I’ve thought about my funeral and how I think it should go down. (Hey – it’s my funeral!). I’ve even written down a few notes and found a web site that can help me write my own obituary. I haven’t done it yet, but unless I die, um, unexpectedly, I am going to write my own obit.
When I tell people that I’ve done these things, they are appalled. Some actually cringe. They think it’s a crazy idea. They think I’m crazy.
I don’t think it’s a crazy idea. But, to paraphrase Billy Joel, they may be right, I may be crazy.
I know some people don’t handle the diagnosis well. They fear dying, um, prematurely. Again, I don’t blame them. It feels like a robbery. It’s not “your money or your life.” It’s “your life or your life.”
While having myeloma has forced me to sort of make peace with the Grim Reaper, I don’t want him/her knocking at my door anytime soon (or later for that matter).
I worry about what will be left undone. One joke around our house, for example, is that I have these unread stacks of books and a passel of eBooks, and I’m not sure I could live long enough to read them all even if I didn’t have myeloma.
It’s things as simple as that – and much more serious and important ones.
The stories of those who have died make me wonder about what they were not able to finish.
On a more cheerful personal note. I’m still hanging around and still able to do many things. Well, I’m not allowed on ladders any more and I’m not allowed to use my chain saw either, but that’s okay. I guess.
I’m not a “count your blessings” kind of guy.
But I do count my blessings. Every day.
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In Memoriam: Dr. Fred Shapiro died last month. Although I was never a patient of his, I knew him. Dr. Shapiro was an open-minded and dedicated cancer doctor in the Albany, New York, area. He started and ran at Albany Medical Center the only stem-cell transplant program we have around these parts. When cancer struck him five years ago, he commented that he never realized how much time it took to be a cancer patient. (Isn’t that so true.) He said he felt he became a better doctor because he now had the real perspective of a cancer patient.
Dr. Shapiro was a person of many talents and many interests – Renaissance man for sure. One of his interests was a salvage company he founded, which is in Albany and Los Angeles. He acquired, or gathered, old things that others probably considered junk and turned them into "gold." A number of restaurants, for example, have his uniquely designed items – from chandeliers to tables – made from salvaged materials.
He did that with people – renewed and recovered those whom cancer had damaged.
The world is a bit poorer because of his passing.
You can read more, if you want, here: Dr. Fred Shapiro dies.
Lou Ganim is a multiple myeloma patient living in Saratoga County, New York. He previously wrote a regular column for The Beacon titled "Birds In Spring." You can view all of his Beacon articles here.
If you are interested in contributing an opinion article, or regular column, to be published by The Myeloma Beacon, please contact the Beacon team at .
Hi, thanks for your column. I got diagnosed in my forties with a wife and young kids. At first, I was paralyzed. Now, I just focus on sticking around as long as possible and I have had a great response to treatment....I realize that can change anytime. As far as the Grim Reaper is concerned, someone once posted months ago that if he knocks on the front door he'll be met by a double barreled shotgun blast..bravado, but I love the visual in my mind. Terry L.
Excellent column, Lou! Last year my husband died prematurely, unexpectedly or whatever you want to call it. He postponed talking about death, dying and his funeral because he felt there would still be plenty of time. OK, occassionally he brought up the subject but he didn't intend to die yet and looked forward to undergoing new MM-treatment. But the MM had different ideas and the Grim Reaper knocked at his door 'out of the blue', despite the fact that we knew that one day in the future it could all be over. Five days later I was arranging his cremation service all by myself. I wish he could and would have told me how he wanted things arranged. All throughout the service and afterwards we celebrated his life. I feel I have arranged everything in his spirit: his closest friends, his family from abroad, poems, his favourite songs (played really loud!), tears but also laughter, and people exchanging fond memories. Just the way he would have wanted it. But stil......
Kind regards
Lia
Thanks for sharing your thoughts, Lou, and for the link to the article about Dr. Shapiro. He does sound like a very interesting and admirable, hard working person, who delved into both practising medicine and restoring antiquities and collectibles. I guess we should all try to be organized as to not leave a lot behind for others to do if we become very sick. With a myeloma dx one does have to think about this. However, I am sure that our loved ones understand if we just keep on keeping on, assuming that we have taken care of the most important items, such as leaving a will, with any instructions in it about our end of life wishes. Sometimes I feel that I will never actually get caught up with being really organized! Happy Thanksgiving to you and your family!
My wife was found to have multiple myeloma in her early forties. We spent many a great year together until her dying in January of this year. We spoke often, more towards the end, of her dying and her memorial and what I would do after she died. While it was hard, she had her wishes realized (except for the one of living on)and I was prepared for her death. It was sad, and I am still sad. But the talk of after her death helped me prepare for her family. She got to talk to her niece who she was very connected to. Spoke and said goodbye to all of her family members which was of great help. Being the person with multiple myeloma sucks and the death was heartbreaking, but, for the caretakers and the family members, having them prepared was, frankly, good. I love my wife and had her home until she died. We spoke constantly of her wanting to live and her dying. Both are important.
My wish for the universe is that no other spouse has to witness their love dying in front of their eyes.
Paul
Paul-
My condolences. How long did your wife survive? Did she have a transplant?
I am trying to make sure my husband also " knows" what to do. Talk to my two adult boys (25 & 28) as well, though not as explicitly yet.
I feel great and still making progress after 2.5 years of being diagnosed at Stage 2-3. I do not have hypercalcemia and also a less aggressive form of MM.
Do not want to go for transplant, though my doctor started pushing for it, in case I become resistant to chemo.
Take care and celebrate her life. That is what. Would want, I think.
Thanks, Lou!
I got jolted into action again this week, when my doctor started talking about transplant " before I become drug resistant." all of a sudden my peace is gone and I am reminded of the reality of MM.
Still, after the initial shock, life is worth living every day, and all those books? Well, libraries are waiting for me!
It is the garage full of art materials that worries me!( I am a scientist)
I was diagnosed at 43, a week before my son's first b'day. That was ten years ago. What I've found more interesting, annoying, troublesome more than anything is others mortality issues. The inability to speak openly and frankly about a future that may come sooner than any of us want/had planned on – I'm not talking about being morbid or death-fixated talk here – is difficult sometimes. Like taxes it is with all of us. In ways we MM'ers have been afforded a glimpse into the future and given an opportunity to make as much of it as we can, however that may manifest itself.
Thanks for the great column, Lou.
Excellent writing. Multiple myeloma made me face up to the reality of death. I find it is a topic a lot of others do not wish to discuss. So I go on down the road, appreciating the days I do have, and making notes for my obituary when the days run out!
I was very touched by your column Lou, and felt a true kindred spirit.I was diagnosed with Multiple Myeloma in 2010. I had a transplant in 2011 and have been on Revlimid maintenance, having a complete stringent response. About a month ago my Myeloma protein has resurfaced. That brought me to reality AGAIN.(The first time was after my diagnosis) when my husband and I bought funeral plots. I have begun to think about what I would want for my funeral . I also want to write my own obituary and don't want a "traditional " service. My friends also think I'm crazy.( Its good to know that I'm not the only one.) I think it is important as you said,to deal with these issues and once you do, you can put them on a shelf and not dwell on them. I have every intention of living and am looking forward to a trip to Europe in the Spring. Thank you for an inspiring column.
Thanks for sharing. I was dx last year at 47 and just got my sct this September. I don't think about dying, never really have from day one. Praying that I get many, many more years before I have to start thinking about it. Your article does have me thinking that maybe I would also like to write my own obituary. It feels somehow empowering and gives me a sense of control. Again, thanks for sharing. Has me thinking.
Nice job Lou! I was diagnosed in 2011 at the age of 47, just a few months after my wife was declared cancer free from NHL. Since then she has been re-diagnosed with and beat Follicular Lymphoma. During that time, our son-in-law was diagnosed with Hodgkins and is still fighting. Death has been a constant in our lives for a few years, although not dominating our thoughts.
A dear friend really put it into perspective for me. She said, "We're all dying. The only difference is that you had some guy tell you when to expect yours which may or may not be right."
Sweet Lou:
Good article. Well said. The only time "pre-mature" should be used is in reference to childbirth and sliding in baseball. ( The guy was out before he began his slide, which was...well short of the bag).
As a Lawyer and a myelomer, I think it is selfish, Passive Aggressive, and disrespectful to dump the duties of our death on next of kin. We have a wonderful opportunity to write a script of how we wish to exit--that the poor sap who suffers a sudden fatal coronary, or is hit by a bus, never has.
Why would anyone Poo-poo that kind of opportunity ?
One of the first things I did before my Stem cell harvest, was to write my obit, contact the undertaker, make my arrangements, and to provide my oldest child and my atty friend, a copy of the details. Then I began steps to be able to rapidly wrap up my Law practice, WHEN that nasty beast (Myeloma) came back for my carcass, madder than hell that the Velcade and Revlimid had "shoo'ed it away" albeit, temporarily.
Why would I leave that distasteful task to someone to do, who is ill equipped to handle it, and would find nothing but dreary toil, in guessing the what, how, and why of ....." What he wanted". ???
Planning our exit is last benevolent gift we can leave our next of kin.
Those who refuse to Plan ..despise their next of kin ??
As Freud said: "There are no accidents, all behavior is goal directed and motivated".
'nuff said.
R
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