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Letters From Cancerland: Not The August Column I’d Planned

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Published: Aug 19, 2014 3:53 pm

My August column was going to be funny (well, maybe at least amusing). My oncologist made such an off the wall statement at my July appoint­ment re­gard­ing mammals and my sudden inexplicable weight loss (never a good sign) that I had pretty much written the column in my head as I drove home from Chicago following our Big Road Trip.

(For those of you wondering after last month’s column, it was a great road trip. It absolutely wore me out, and I was pretty sick by the time we walked back through our front door. But it was a great trip.)

While away, I was without connection to email or Facebook or even basic news. So I was pretty clueless as to any and all events transpiring during the week, other than catching an occasional headline here and there.

That wasn’t all bad, because times got pretty hard in Cancerland while I was sampling pie in Chicago. Not for me personally. Heck, I’m used to being exhausted, sick, and constipated most of the time. But for friends and colleagues. Once I got back to Ohio and caught up on email, Facebook, and The Myeloma Beacon, I found myself sifting through the devastation.

First was the email from my fellow myeloma traveler, Larry.

Larry is a Vietnam vet who probably got a pretty good dose of Agent Orange and anything else used in that war. He was diagnosed over a decade ago at age 53 after he fell and broke several bones and a doctor asked “so why do you have the bones of an 80-year old woman?” Larry just started Revlimid (lenalidomide). His email was a little about that, but it was really about all the new fractures: a partial compression fracture of his L-3 and two ribs, the latter fractured when he had a lower back spasm that threw him on the floor. As Larry laconically noted: “the spasm was so severe I knew I was going to hit the floor. Unfortunately, on the way to the floor, I fell back into a countertop.”

Then my friend and colleague Doug (relapsed stomach cancer) had an inconclusive CT scan earlier in August, just months after surgery to remove the new tumor, so he had a PET scan and is now waiting for the results.

Doug had already had an emotional setback when his oncologist said he would not remove the port (put in for pre-surgery chemo) because “it’s going to come back again.” So an “inconclusive” CT scan just weeks after that little ray of sunshine was not the kind of news Doug needed or wanted. I totally understood why, in the midst of a phone conversation about a joint project, he suddenly hung up on me when his cell started ringing. (It wasn’t the PET results, unfortunately.)

Dang, I leave the state for JUST ONE WEEK, and all hell breaks loose.

And then the rest of the sky fell in.

Catching up on Facebook the morning of August 11, I saw the Myeloma Beacon post announcing the death of fellow columnist Stephen Kramer. The news hit me in the pit of my stomach. My stomach took an even harder blow a few minutes later when I went to The Beacon saw the notice about Arnold Goodman’s death a week earlier.

Now I was reeling.

Both Arnie and Stephen?

Look, I never met Arnie or Stephen. (I’m not on Pat Killingsworth’s A list either.) But through their columns, I knew them. Arnie especially had made a big impression on me; his columns were the reason I contacted The Beacon and started writing a column myself. From their recent columns, it was apparent that the myeloma front was becoming grimmer for both Arnie and Stephen. In Arnie’s last few columns, he made it clear that he was running out of options and time.

That was a pretty bold move. We don’t talk about death a lot in our columns. It is a taboo topic by tacit agree­ment. Death is too grim, too depressing. It’s not pretty. We do not embrace it easily or readily. In Cancer­land, death is a constant presence. With myeloma, it is often the end game.

The poet John Donne wrote “any man's death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee.” Doug thinks he’ll get five more years, “maybe.” Larry reflects that the myeloma is “ganging up on” him. I don’t know where my disease is going right now either. Losing both Arnie and Stephen in the span of a week makes life feel all the more transient.

Indeed, it’s been a difficult week in Cancerland. Difficult enough that I shelved my original column and wrote this one instead. Two colleagues are gone and the world is a little emptier.

Life goes on and on. There are still columns to write, Revlimid to swallow, pies to bake, days to complete.

Someday I might even tell the funny story about my oncologist. Just not this month.

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 .

Photo of April Nelson, monthly columnist at The Myeloma Beacon.
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  • Nancy Shamanna said:

    April, It is just too sad as to what happened with the well liked columnists, Stephen and Arnie. I am sorry that you had to find that out all at once, as well as finding out about your friends who also have cancer. I am in a local support group, and I can assure you that between what has happened this calendar year here and then also losing our co-writers at the Beacon, it has been a really awful year that way.

    I hope and pray that they did not suffer too much, and that their families do know just how much we appreciated them sharing their stories.

  • R said:

    Glad to hear you had a great road trip.

    Life did go on, ....unfortunately. Have also buried some local Non-myelomers along the way, as well as the Beacon MM favorites, in the past few weeks.

    Glad to have you back.
    Did you ever read "Travels with Charlie"--J. Steinbeck ? After your trip--you just might appreciate it.

  • Alex said:

    Yes, the "sun always comes up" approach from some writers is very hard to bare and writing on death, symptoms, and hardship should feature more here. While not the first point of discussion at any oncologist meeting, it needs coverage and this forum allows a firm of discourse not found at such immediacy.

    "Keep smiling" hides the despair, writing on the "ups" of myeloma hides the bleak outlook but we need to peel back those layers and expose what lies at the end of this treatment process.

    The 2 recent deaths brought an unexpected depression my way, these guys were part of my daily check on what's happening out there. They were, or had been, going thru what I am now. This wasn't supposed to happen according to some correspondents.

    But it happened and it will happen again ... perhaps while I'm comparing myself to a coach, smiling, organising a charity drive, or shifting house.

  • April Nelson (author) said:

    R, yes, I have read Travels with Charlie. Have you read Blue Highways by William Least Heat Moon? That too is a classic road trip book.

    Alex, your comments parallel observations of a friend of mine who is recovering from surgery for removal of a soft tissue tumor (he has myxoid liposarcoma). He quickly discovered that most people don't want to hear the negative news, like the 50% recurrence rate. They want to hear the happy news--surgery went great! The tumor is gone! So he has learned to give out only thumbs up news briefs, and keeps his doubt and uncertainties to himself and a very, very tiny circle. That has made for a lot of emotional isolation. We (the universal "we") are reluctant to talk about death and almost silent on the topic of dying. I'm finding that silent barrier a hard one to scale. As R and Nancy both point out, we all lose friends and colleagues--to cancer, to age, to whatever. It is talking honestly about dying and death without platitudes that is hardest.

  • Joe Courtney said:

    Thanks for the great column, April. Especially the John Donne quote. I realize that when I die it will be an event that changes the lives of my loved ones - not just me. It is sad to think about. Joe

  • matt goldman said:

    Thanks April. This is a real thought provoking discussion.

  • R said:

    Your Sojurn and your well chosen line--"There are still columns to write, Revlimid to swallow, pies to bake, days to complete"---summoned one of my favourite vignettes :

    “...many a trip continues long after movement in time and space have ceased. I remember a man in Salinas who in his middle years traveled to Honolulu and back, and that journey continued for the rest of his life. We could watch him in his rocking chair on his front porch, his eyes squinted, half-closed, endlessly traveling to Honolulu.”
    ― John Steinbeck, Travels with Charley: In Search of America

  • Thomas Shell said:

    Aloha April,

    Keep trying to smile April. Reading about our friends' deaths, while bitter pills to swallow, are part of why I read the Beacon. I appreciate all of the reality portrayed here - yours included. I can really relate to your story above about your friend's ability to talk about his operation. Only a very few CLOSE friends and family are really interested in our real stories. The rest just want the sugar coated version. I find this frustrating and disappointing.

    I guess that is the point of a "support group". While I am not thrilled about the term (for my own complicated reasons), that is what we have here. I want to hear about your (and others') trials and tribulations. It makes mine more real; more bearable.

    Keep up the good work!!


  • Mike Burns said:

    Thanks for another excellent column, April. It brought tears to my eyes, just as when I read about Arnie and Stephen. But that's good. I think.

    Alex's and Thomas's comments about most people only wanting to hear the good news are so true. I tell people that I'm now in "the best remission category," which I'm thrilled to be able to say, of course. I don't tell them that studies show that that means a median of only 44 months (or whatever it is in that ballpark) until the disease relapses. And I try not to think about it that way myself. But sometimes, like when reading about Stephen and Arnie, it's not easy.

    On a more positive topic, if you like travel books, check out "The Longest Road,' by Phillip Caputo. I loved it!