Sean’s Burgundy Thread: Answering The Call
As I approach the seven-year anniversary of my Thanksgiving 2008 multiple myeloma diagnosis, I wanted to share a little bit about the results from my most recent myeloma check-up.
But first, I’d like to tell you about some of the quirky things that have recently happened:
It was not once, not twice, but four times in the span of two weeks that I’d been contacted by friends that I haven’t seen in years. Their common message was how sorry they were to learn that I was faring so poorly in my fight with blood cancer.
While I appreciated their concern, I was taken aback by their sudden coming out of the woodwork with pronouncements that I was on my last legs. Again, I hadn’t seen these folks in 15 or 20 years.
I was beginning to wonder if my new popularity was really because I’d won a lottery or had gotten an inheritance that I didn’t know anything about.
I would agree that I haven’t felt like my old self these last few years. And sure, there were all those fractures, the pain, fatigue, blood clots, pneumonias, mouth sores, steroid manias, hospitalizations, surgeries, neuropathy, stem cell transplants, chronic insomnia, and years of chemotherapy, that I’d been through.
That does look like quite a lot all written down together. But I thought that I was doing rather well considering all of the above.
I politely thanked them and told them not to worry about me. The first call took me by surprise. The second call was so sad and dramatic that I bent over backward to assure her that I was okay. By the time the third and fourth guys contacted me, paranoia began to set in.
Again, I started to wonder if they knew something that I didn’t. And I’m not talking about the lottery.
To get to the bottom of it, I did a little sleuthing and discovered that it was a mutual friend who was hyperactively addicted to social media and had mistakenly spread the news of my impending demise. Sheesh, I hadn’t seen her in 20 years, either.
I suppose that her well-meaning attempt at sharing my story was relatively harmless and it did garner a few good-natured laughs in the end. And if you know me, you know that I do like to laugh.
In hindsight these little exchanges not only helped to reconnect us, but they gave me an opportunity to tell them about myeloma and to share the following story with them about yet another one of our long-lost musician friends.
Here is a representation of the phone call I received about five years earlier:
ME: 'Hello, this is Sean.'
FRIEND: 'Sean? SEAN! Wow, man, I thought you were dead!'
ME: 'What? No. Who’s calling, please?'
FRIEND: 'But you had cancer?'
ME: ‘Uh, yes. Do I know you? '
FRIEND: 'Man, it’s me, Frog! FROOOOOG!’
ME: ‘Frog! It’s been a long time. How the heck are you?’
FRIEND: ‘I’m righteous. But you, you have cancer, right? And you didn't die?'
ME: 'Lemme' check. Nope, I'm still here. Hey, Frog, if you thought I was dead, why'd you call?'
FRIEND: 'I, uh... I was just checking. Wow, man, you didn't die. That’s cool!'
ME: ‘Yeah, that is cool. Hey, Frog, I'll make a deal with you. If I do die, I'll give you a call. That way you won't have to worry about calling me when it happens.'
FRIEND: 'Yeah! That'd be great, man! I mean, not if you died, but if you called me when ..uh...'
ME: 'Hey, if you don’t hear from me, just take it as a sign that I’m still around somewhere.'
FRIEND: ‘Yeah, I’ll do that. Well, gotta’ scoot. I’ll talk at you later. Or, uh, not... Bye.’
That was a wonderful, funny, albeit strange way to reconnect with Frog. I’m assuming that he’s still out there somewhere making music. I haven’t heard from him since. He always did make me laugh, but almost never on purpose. I also suspect that he was well acquainted with some pharmaceuticals not found in my myeloma medicine chest.
By the way, to protect the innocent, Frog was not his real name. He went by a toadily different amphibian moniker.
Despite the craziness of all of that nonsense, I felt their love. Those moments that make us laugh and love in the midst of the myeloma madness, I call S’myelomas. I’m always on the lookout for them.
Anyway, so last week I went back down to Little Rock for a nine-month myeloma check-up. Everything went as smoothly as silk. All the appointments were on time for the most part.
I had a PET scan in a new machine that only took 15 minutes instead of the usual 45 minutes, a full body MRI, a relatively painless bone biopsy, and a bone marrow aspiration. I willingly gave them some blood and urine, met with schedulers, data nurses, and, of course, my myeloma doctor.
The verdict?
I am grateful to say that I have remained in complete response since my first autologous stem cell transplant back in mid-2009.
No M-spike, my specimens were minimal residual disease (MRD) negative, there were no new lytic lesions, no changes in my 50 or so osteolytic lesions, my kyphoplasties and inferior vena cava filter are still holding strong, my PET scan didn’t light up like a Christmas tree like my very first one did seven years ago, and my blood chemistries and counts look pretty okay.
I do have osteopenia, continuing fatigue, arthritis, gall stones, and various other sundry areas to keep an eye on. And I’m still four inches shorter than I was several years ago because of spinal compressions. I also haven’t gotten any more handsome or clever. Darn.
I do know, without a shadow of a doubt, just how blessed I am to have had these last seven years with my wife Karen and the kids. I pray that your days are filled with S’myeloma moments, too.
Sean Murray is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Sean,
As always, amazed at the parallelism of our lives. Your story is comforting beyond words. Keep it up
I enjoyed your story! Thanks.
Hi Sean,
I really appreciate your sharing your journey with us. Your humor is an inspiration for all myeloma survivors. You must be a joy to your family and I hope you are around for them for a long time. Keep being handsome and humorous. Marti
Hi Sean,
I am glad that the reports of your death were greatly exaggerated! Congratulations on your excellent recent lab results. And thanks for another great column.
Mike
Nice column, thanks for sharing laughs. Happy, your numbers are good Sean.
Glad to hear that your myeloma is nowhere to be detected, Sean! That is a great S'myeloma happening! Thanks for your witty column.
Sean,
Great column! Since I am "Class of 2009", not too different from you, I get similar reactions from people I have known for years. Even from non-onocological medical professionals, filling out forms with D.O.B. and Employment Status info. They look over at me and then to my wife saying "He still works, ah, really?". Business visitors come into my workplace, standing in the front lobby, eyeing me up and down for adverse medical signs, and seeing none, say they heard I had some kind of cancer, is that so? To be honest, I know that isn't the case of MM patient. Almost every journey is different. So I am extremely grateful to the medical staff in Hackensack! But your column does give credibility to the social experiment: tell a story to one person in a room of let's say 20. As that story is passed around, it gets "modified". You will get a totally different story from the last one.
Now the question: "Do you really have a friend named "Frog"?
Toadly love your column. Fantastic news re the myeloma, here's to many more years in remission with plenty of S'myelomas.
Amazing skill as a writer and humorist! Great news on continued remission!!
AWESOME news!! Congrats on the great test results. Thanks again for continuing to write your column. You are a gifted writer.
Great piece Sean.
When I run into relatives I've not seen for some time, I sometimes wonder if I look bad enough that they're not - disappointed is the wrong word - surprised I guess, that I'm ambulatory. I recall, pre-diagnosis, gearing up for meeting a friend, relative or client who was dealing with cancer. Now, as part of that world, I'm not thinking about multiple myeloma when I meet someone, until I see the hesitation in the others' eyes.
Fact is, I readily manage the discomfort of multiple myeloma (except for the weeks following a sct), especially after a Dana Farber visit. There I share space with patients who's every day is like our post transplant days.
Peace,
Frank
Another great article Sean! My husband and I cracked up with the dialogue of your long lost friend. My husband has only told a few very close friends of his multiple myeloma diagnosis and treatment. I don't know why but I respect his wishes. Of course, we have told our family too. Since we are only 16 months into our multiple myeloma journey, we are still taking very cautious steps in what we do and who we confide in. The Beacon and contributors like you provide such interesting and valuable information for people like us. Keep up the great stories - I look forward to reading your articles.
Praise God ! What wonderful news for you !
I loved your story, laughed. I have experienced sometimes the hand on my shoulder and the soulful look into my eyes. " How are you doing." I have learned canned responses such as: "Good, how are YOU doing?" The majority I simply thank them for their kindness. I know they all mean well.
Maureen