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Myeloma On The High Plains: To The Saints In Our Lives

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Published: Apr 7, 2020 5:43 pm

My wife is a saint.

No, she did not coerce me into writing that. As a matter of fact, she does not even know what I am going to write about in a column until I show her the final draft right before I send it out. (Notice that I did make mention of any col­lab­o­rative effort re­gard­ing the writing of my column. Why? Well, it’s a matter of ex­peri­ence and maybe marriage preservation. But I digress.)

I write that my wife is a saint because, frankly, living with someone who has multiple myeloma is not easy. Doing it for over five years? Well, that borders on the unbelievable.

And before I write more, here is a huge shout-out to all the wives, hus­bands, and loved ones of those of us who are living with multiple myeloma. You all are saints. Your lives have also been tre­men­dously impacted, and guess what? Often you do not get the credit that maybe we patients get for living with multiple myeloma. You too are living with multiple myeloma. The anxiety, worries, and dark thoughts are not limited to just those of us who actually have the dis­ease.

Oftentimes people come up to me and ask me how I am doing, tell me that I am “looking good,” com­pli­ment me on my attitude, or say some­thing similarly nice to me. And right next to me is my wife. Rarely is there a “How are you doing, Nancy?” or a “Wow, so good to see you too, Nancy.” It is almost as if she be­comes invisible (which in theory is not a bad superpower).

(Okay, here is an honest disclosure. Before I had multiple myeloma, no one came up to me and told me I looked good. No one. So I take compliments like that one with a huge grain of salt.)

My worrying, anxiety, and sometimes almost devotional need to eat, sleep, and drink in­for­ma­tion about multiple myeloma and to engage in conversations about cancer, dying, or what hap­pens next border on insanity. And yet, here Nancy and I are, still work­ing as a team. Incredible.

To use a baseball analogy, the person living with cancer may be the star pitcher with the big contract. Sort of a glamour boy. But the part­ner is probably the home-run hitter, the star relief pitcher, and the gold glove winner in center field all rolled into one. I should also mention the man­agerial acumen of part­ners because, truth be told, their level-headedness, attention to detail, and ability to hear what the oncologist is saying after she or he says “You have cancer” cannot be discounted.

(Boy, I just wrote “You have cancer,” and recollections started to flood back from those early days. Ugh.)

My myeloma was diag­nosed because of tre­men­dous back pain caused by countless lesions in my bones. All ac­­tiv­i­ties were painful. And for a while, the same was true after diag­nosis. Walking, sleeping, moving my body; it all was not good.

So, what hap­pens?  The day after my diag­nosis, a tre­men­dously comfortable easy chair was de­liv­ered to our house. Someone went to the furniture store, picked out a chair, and had it de­liv­ered. And then a huge TV com­plete with an easy-to-under­stand remote con­trol showed up and was hooked up in the same room as the easy chair. And so, it began. And so it goes on still.

In doing my column re­search, I looked up the definition of saint. (Yes, I use the e-dictionary a lot.) The informal definition given was “A virtuous, kind, or patient person”. I was good with that. But then, in a slightly smaller format, I noticed this sentence in italics: “She is a saint to go on living with that man.” I kid you not! Scary.

Nothing that has been put into words here in this column is new. And I apologize if you are sick and tired of hearing this mes­sage. I get that; there is nothing worse than hearing the same old stories.

But it is never a bad idea to say “Thanks” or to say “Hey, I got you,” or to maybe turn that spotlight of living with cancer off of us and onto those of you who also live with cancer but just not in the same way we do. Your story is just as im­por­tant, just as relatable, and just as in­ter­est­ing.

I guess this is my turn to officially say “Thanks” because, as you know, “Ya never know.”

Living with multiple myeloma has taught me so much. Before the final draft of this column was written, I casually asked Nancy if she had learned any­thing about “life” or about “the im­por­tant stuff” in our lives during these years with myeloma.

And guess what? She just laughed.

That got me thinking that maybe, just maybe, she was in on the writing of the e-dictionary.

Mark Pajak is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His column is pub­lished once a month.

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

Photo of Mark Pajak, monthly columnist at The Myeloma Beacon.
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6 Comments »

  • Nancy Shamanna said:

    That is such a nice column, Mark, and yesterday (the day the column was published) was 'National Caregiver's Day', so it is appropriate too! We are really fortunate if we have a caregiver who is a saint!

  • Susan Mandel said:

    Great article and, yes, our caregivers are the unsung heroes! I thank God for mine every day. :)

  • Patty Nolan Bodin said:

    Mark and Nancy, thank you for sharing your thoughts. I couldn’t agree with you more. Having multiple myeloma is horrible and watching someone struggle through diagnosis, treatment, and recovery is extremely tough. I have come to know lots of other caregivers in the past six years, and each and everyone is a saint. What is even more remarkable is that no one signed up for this but allowed their lives to be transformed because of the love they have for one another.

  • Thomas Shell said:

    Aloha Mark,

    Amen brother! My wife gets all the crap and very little of the sympathy. Thanks for speaking up for our unsung heroes!

    Aloha & Carpe Diem!
    Tom

  • Patty Muckala said:

    Mark,

    I always enjoy your columns. Yes, our caregivers are unsung heroes. My husband is my rock. He didn’t sign on for all of this myeloma drama, but he just is there always, calm and patient. He wants the best for me, for us. He understands the ups and downs that our family and friends can’t possibly understand without walking in our shoes. He’s living it, too. I try not to take all that he does for me for granted. Your column has reminded me that I need to say “Thank you” more often. Thanks for the reminder.

    Patty

  • Karen Johnson said:

    Hi Mark,

    I'm awaiting results at the moment, lying here with worse back pain from the actual bone biopsy!

    It's very early days for me. After going to the doctor with unrelenting back pain, feeling tired, slightly low hemoglobin and some funny urine tests, my GP decided to do a CT of my back.

    I was a little worried (mean I cried and blubbered) when he told me I had a lytic lesion on my L2 and something on my sacrum, it was a shock.

    That was last Monday, so in under a week my biopsy was arranged, bloods taken, and an MRI. Bloods showed my immune system was virtually non-existent and my light chains were in the 3000s. I'm awaiting results. It looks like multiple myeloma, I've been told.

    I'm in Australia and am 56. I was looking forward to getting to retirement and enjoying myself, spending more time with my grandchildren and family.

    You have given me some hope that, although it might be a struggle, its not THE END yet.

    I will let you know how my biopsy goes.

    Thank you,
    Karen