Letters From Cancerland: Where On Earth?
We’ve had a long, slow spring here in Ohio this year. Oh, there have been a few summerlike days here and there, but mostly the weather has been cool and often rainy, more like mid-April than early June. As a result, the peony bushes in my parents’ yard stayed shut tight for the federal Memorial Day but opened in time for the traditional Memorial Day on May 31.
Memorial Day, which began as Decoration Day following the Civil War, is still a big deal in our area. In the weekends leading up to the end of May, you see families all over cemeteries -- weeding, mulching, cleaning, and freshening gravesites.
My husband Warren and I had paid a visit to our town cemetery, Oak Grove, earlier in the week. Oak Grove dates back to 1851 and is a prime example of a mid-nineteenth century “park” cemetery. We placed flags on his parents’ grave, one for his father, who served in World War II in the Army, and one for his mother, who served in the Red Cross overseas in the same war.
A week later, we accompanied my parents to two cemeteries out of town. One, just a few miles away, is a sleepy, overgrown, little country cemetery, now not used, in which some of my mother’s family are buried.
The second stop was the large, open cemetery, a few more miles into the countryside, in which my father’s parents and my parents’ infant daughter are buried. That second cemetery, Green Mound, spreads out over a series of small knolls.
The old township school building used to stand next to Green Mound. Although it was torn down some years ago, the ball fields remain. On the sunny afternoon we were there, a game was in progress, and you could hear the calls of the players and an occasional “thonk” of a bat.
I have been coming to this cemetery since I was a very small child. We visited it a lot when I was growing up; it was on the route to and from my grandparents’ nearby farm. Although I didn’t realize it then, I now appreciate how very much my mother missed her baby, who had died suddenly at three months. While my parents took the time to clean the headstone or just stand silently, arms around each other, my brothers and I would use the time as opportunities to read nearby headstones. Visiting the cemetery was not a macabre experience, but a natural part of life.
Over a half century later, Green Mound is slowly filling with family friends and former clients. I do not have to look very far to see someone I knew. Eventually both my parents and my aunt Ginger will also be here.
As we drove away this year, I said to Warren, “I want to be buried here with friends, with sunshine, where I am comfortable. I want to be buried where you can hear a baseball game.”
Warren and I have not talked a lot about what happens after I die. (Given the myeloma, I feel comfortable projecting I will die first, short of a catastrophic accident.) But he didn’t blink. “Why not Oak Grove? You can hear trains there.”
That was the end of the conversation for now.
Warren and I do not often talk about the details attending death, or what I think of as the aftermath of death. We have talked some about dying, about my wishes with regard to palliative care, stopping treatment, and remaining at home, but we have not spent much time on what comes after. He knows I want a memorial service, not a funeral. He wasn’t surprised to hear that I plan on writing my own obituary. We have talked about my funding the performance of the Nimrod movement from Edward Elgar’s Enigma Variations at a symphony concert after my death.
But the disposition of the remains? We haven’t spent much time on that topic. We both assume we will be cremated, although I am now watching to see if Ohio will change its laws to allow for alkaline hydrolysis (“bio-cremation”). Warren has expressed a desire that our ashes be buried together. I also have adult sons in Oregon who may want to sprinkle a piece of me out there. And I always was fond of water: the oceans, the Great Lakes, rivers, small creeks.
I may just end up all over the place. I certainly am all over right now as I think about it.
Anymore, the question of where to scatter the remains is limitless. Scattered atop a mountain? Sent up in fireworks? Thrown into the Ganges? It can be arranged (for a price, admittedly).
Decisions, decisions.
The Revlimid (lenalidomide) I began back in February has shoved my myeloma back into remission. After four full rounds, either the side effects are less onerous or else I have grown more tolerant of them. It is likely a combination of both. But I don’t kid myself: I know what myeloma is (incurable, terminal), and I sense that the current treatment, let alone those that went before, is taking a slow toll on my body.
So I really should write at least a rough draft of my obituary. I probably ought to update my will, which I also keep meaning to do.
And I really, really need to figure out where on (and in) earth I’ll end up.
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 .
April:
Nice Article. Well written, as usual.
As a fellow Lawyer (and Single Parent)--let me please kick your butt!
Do the Will. Do the DPOA. Do the POA-HC.(w/ Copy to your Md's Office) Do the Laundry List. Write the Obit. Do the Letter of Direction.( to Family) Add the extra name to accounts/ car titles--if need be. Sign the Trust Documents. Pre-Arrange the Funeral/Service. Etc.
They will all be "one less thing to worry about, when we get ill, forgetful, incapacitated, ill," ( Yes, Ill) ..... and things accelerate quickly.
Did you see how Casey Kasem went out?? Like a torn up Kewpie doll at a third rate Carnival.
Emotional subject--You bet! Difficult ? --Yep. But DO IT !
It's what we constantly tell others in our professional lives--but time to follow our own advice and plan these things out for family.
I had a full set in place before Surgery. Once I got done with all the Surgery, Radiation, and started the chemo,--I had mine re-done.
All I have to fill in is the DOD.
Strict Clinical Approach ? perhaps.
However, It is the gift that we (alone) can leave our loved ones.
Often, the last one.
Regards,
Something about the cobbler's children always going shoeless comes to mind. Love this comment, R!
I have current General POA, Durable POA for Health Care, and Living Will. The latter two are also on file with the local hospital and my oncologist. But yeah, I need to update the rest, now. Estate planning is something people do tend to put off; anyone living with myeloma needs to get over that hesitancy.
And that includes me.
That is a beautifully written column, April. Like you, I have a will (have since my children were born, since we always worried about their guardianship if there were a joint disaster of me and my husband). We update our wills as necessary and they are just filed away for now. I hope my family doesn't need mine for awhile yet! I liken it to having an umbrella with you ... if you do, it isn't likely to rain! Of course, I am being facetious, but seriously, I hope that you don't have to worry about such issues for a long time yet!
I have been keeping my family informed about my wishes when I die for many years now. I always told them I wanted to donate whatever organs I could. Now with myeloma that is no longer an option. I have changed my plans and am going to donate my body to a local medical school. I think budding doctors need hands on anatomy and maybe they can learn a little about myeloma in the process. There is also the chance it will be used in research.
After they are through with me, I will be cremated. When I told my daughter she and her brother could have the ashes she asked what she would do with them. I told her I did not care. I also keep my necessary documents up to date and change them when I feel it is necessary. My children have learned to tolerate my discussions of what to do for me after I die. Myeloma has a way of changing our plans.
April
Interesting article on old cemeteries. I have always found exploring our old cemeteries interesting, since so many in there died very young. Most of us with myeloma, the over sixty group, would be considered long living people back in 1800's and even into the 1900's. Times were tough back then, perhaps more so than now. This gives us a different perspective for our life with MM.
So perspective is important. Revlimid has been a good drug for me so far, in my 9th month. You also sound like you are having a good response to Revlimid. I have not had any of the serious symptoms so far, and the regimen is quite tolerable. In fact, it has gotten easier, as the first few months resulted in a bronchial infection every month at the start of each new cycle.
Thinking about the future, the estate planning, like funerals, wills, POA's etc is good to get under our belt and get the preparation done. Even if our end is not imminent, it feels good to realize the cleanup is not left for the family.
I am glad you enjoyed your trip to the country, to be with family, present and past. Great time to reflect on our blessings and issues we are dealing with.
April:
Thank you for segueing a taboo subject ( Estate Planning) out of an ethereal setting.( Bucolic vistas )
In any event, it's a subject Myelomers need to embrace.
Thanks for sliding that one in.
Regards,
PS--I bet you like Impressionism Art forms ...?
April,
I forgot to say how much I enjoyed your article. I always do. I am not one to visit cemetaries but I did quite a bit in looking up graves of my ancestors. It is always interesting.
April, such an important subject, but my experiences have shown me more than once that in the final days, all that matters is who is willing to be by your side, who can commit to unequivocally being there in your time of need. Who would be there if nothing is left to gain but the presence of you! No paper document can designate love, caring and compassion.
Things change, money gains value and loses value, even legal documents become complications as laws change and society makes new rules. A human being's life ... well, that is so precious and priceless to those who have shared the journey.
I hope your strong will and courage perseveres and that you joyfully play and enjoy the time each sunrise provides. Each sunset should have a history of time and money spent on fun. Create as many happy events as you can squeeze into the good days! Carpe diem and the rest will be just fine.
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