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Sean’s Burgundy Thread: Answering The Call

By: Sean Murray; Published: November 3, 2015 @ 4:16 pm | Comments Disabled

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 [1].

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .


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