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Sean’s Burgundy Thread: My First Myeloma Thanksgiving

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Published: Nov 24, 2016 1:00 pm

I had a sneaking suspicion that Thanksgiving 2008 wasn’t going to be an ordinary holiday. Unfortunately, I was right.

For starters, our long-held Thanksgiving plans had changed dramatically. Instead of taking a traditional over-the-river and through-the-woods trip north to visit relatives in Chicago, we ended up driving south to spend the holiday with relative strangers.

And to boot, my wife Karen and I had to leave our daughters behind. How’s that for Thanksgiving spirit?

Now, it’s not that we don’t love our kin and kids, but there were more pressing issues than sharing turkey and the trimmings with our beloved.  There were life and death issues, to be exact.

After seeking relief from severe back pain, two of my local doctors suspected that I had multiple myeloma. They felt that I should see a myeloma specialist to receive a definitive diagnosis, and if it was myeloma, to ensure I received proper treatment.

They urged that we go sooner than later as I was in pretty rough shape. The way that I felt, I couldn’t argue with them.

Karen’s sister came down from Chicago to Missouri to take care of our five- and eleven-year old daughters while we were away. The girls knew that I was ill, but we kept the specifics from them. Actually, at that point, we didn’t know that much about my predicament; we hoped that the specialist we would be seeing could fill in the blanks.

Karen and I packed our van and began the four-hour journey from our Missouri home. I was in considerable pain, so Karen took the wheel. We removed the middle seats of the van and I sat in the back, propped up my feet, and tried to remain as comfortable as possible. I was sandwiched snuggly between a dozen or more pillows, comforters, and blankets.

Despite Karen’s gentle driving, I felt every pot hole, speed bump, and stitch of winding, rough two-lane road that each little town along the way had to offer.

After we finally arrived at our destination, we checked into a small hotel located near the hospital, and called the girls to chat and to say good night. Although she tried, Karen was not able to mask her worry as she softly talked with her sister. The girls were giggly and goofy as ever, and it warmed my heart. We settled down for a sleepless night, Karen in the double bed, and I in the ancient recliner with an annoyingly squeaky footrest.

It was still dark at 6 a.m. when we arrived at the hospital on that Monday morning before Thanksgiving. We found our way to the lab where I was scheduled for blood tests and we were soon off and running. Over the next two days, I underwent my first bone marrow biopsy and genetic testing, an echocardiogram, a metastatic bone survey, an electrocardiogram, a pulmonary function test, and a bone densitometry scan. We also met with a nutritionist, a social worker, and an insurance specialist, and attended a new patient orientation.

No doubt this list of events is very familiar to you multiple myeloma veterans. Truth be told, even if I had been well, the two days of rigorous testing would have exhausted me.

Late in the evening of that second day, I went in for a full-body MRI scan, after which the technician informed me that a doctor wanted to visit with us in the now empty, except for us, waiting room.

He said matter-of-factly that I needed to be admitted to the hospital immediately. The severe pain that I was experiencing was caused by numerous bone fractures and three collapsed thoracic vertebrae. He didn’t understand how I was able to keep walking through the pain because shards of bone and tumors were pressing on the thecal sac around my spinal cord. He worried that if I was to fall or twist the wrong way, paralysis was a possibility.

That didn’t sound so good, so I immediately told him to get me checked in. He insisted that I ride in a wheel chair. I let him push.

By midnight, I was placed on a floor designated for critically ill patients. Karen went back to the hotel more than shell-shocked. Nurses hooked up an IV with pain medication, and I finally felt some modest release from the sharpest pains. I fell asleep in a fancy hospital recliner and was awakened a couple of hours later by nurses checking my vitals.

Throughout the next couple of days, various specialists paraded through the room to evaluate me. The hot topic de jour was whether I should undergo conventional back surgery, which would postpone my myeloma treatment by several weeks, or whether I should start the treatment regimen in order to reduce the tumor burden first. It was not a clear-cut decision. I had no idea what the correct answer was.

By Thursday, no consensus had been reached, so Karen and I decided to announce that we were going home for Thanksgiving. We desperately wanted to be with our kids. The doctors weren’t wild about the idea, but we agreed to be careful and to return the following Monday to resume testing. Otherwise I would be sitting in the hospital room for another four days until the next doctor would see me.

After all, it was Thanksgiving.

Once again I was cocooned into the van; we made it home by 10 p.m. We softly hugged Karen’s sister and the kids. Karen and I enjoyed a better-late-than-never plate of Thanksgiving dinner. The stress of the last several days finally hit us, and we quietly cried after the little ones went to bed.

So THAT was how my first Thanksgiving with multiple myeloma went. Plans ruined. Fear. Pain and an uncertain future. We felt that we’d lost control of our lives. For all we knew, I was dying soon.

How on Earth was I supposed to be feel thankful? I will tell you how I got there.

In the darkness of those early days, I had still not seen the dawn. I prayed. With time, understanding, and perspective, the dawn slowly broke. I only needed to hang on and to keep going. Treatments started to work. We pushed forward.

I am not glad that I have multiple myeloma – who would be? But in many ways, I am thankful for where it has taken me.

I now know, without a doubt, that the girls and I are loved and appreciated by our remarkable family and friends. You suspect it is so, but to experience it is powerful. I am thankful that I have a steadfast, courageous best friend in my wife Karen. To watch my children grow is a gift. And my faith has only gotten stronger through the trials.

I am thankful that I live in a time where we are making headway in the war against multiple myeloma. I am thankful for the patients, caregivers, doctors and nurses, researchers, and for all who join in the fight and the search for a cure.

I am one of the most fortunate of the unfortunates. I am overwhelmed with gratitude that I am still alive eight years after my diagnosis.

I wish the very best for you all this holiday, especially if it is your first Myeloma Thanksgiving.

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 .

Photo of Sean Murray, monthly columnist at The Myeloma Beacon.
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12 Comments »

  • Wendy Merks said:

    This really resonated with me. I, too, was diagnosed with multiple myeloma in 2008 and remember our family being completely overwhelmed with the diagnosis. My wish then was to see my kids make it to adulthood (they were 15 and 13 at the time), and that has been met. I am Canadian, so my Thanksgiving has come and gone, but I certainly continue to be thankful for the support of my core group of friends who I can count on for anything and are genuinely interested when they ask how I am. There have been many ups and downs over the past eight years and this past year has been especially rough, but my response now when asked how I'm doing is "Still kickin'."

    I always enjoy your Beacon musings, keep up the good work!

  • Nancy Shamanna said:

    Happy Thanksgiving to you and your family, Sean! I counted up the years and it was also my 8th Thanksgiving since I was diagnosed, last month. We are so thankful as a family to be doing well!

  • Eric said:

    Great article Sean!

    You expressed many feelings my wife and I had in the early days of multiple myeloma. Thanks.

  • Kathy Farr said:

    I was diagnosed right before Thanksgiving 2010. My husband and I had the holiday alone while we tried to understand what was going on and how to explain it to my Mom and 3 grown sons. Thankful for a complete response. Thanksgiving will always have new meaning since 2010. Great column, you really put my thoughts into words. I love knowing I'm not alone!

  • PattyB said:

    Wonderful column Sean! I really like your expression, "one of the most fortunate of the unfortunates." To be sure, your experience was quite harrowing. We were talking about our first Thanksgiving with multiple myeloma and while it was just in 2014, it seems like such a long time ago. Like you, our original plans were ruined. The entire family was in shock. We made it work, and like all the succeeding holidays, we have had to make adjustments. We too are fortunate among those unfortunates with multiple myeloma to look forward and live life to its fullest. This Thanksgiving we thank God for the blessings we have received and pray for all those with multiple myeloma along with their caregivers and all the dedicated medical professionals.

  • Rod Williams said:

    Sendin' you a bunch of love and positive energy, Sean!

  • Tom Shell said:

    Aloha Sean,

    Excellent article! I'm glad your still with us.

    Happy Thanksgiving!

  • Mark Pouley said:

    Thank you Sean. Thanksgiving 2015 was my "first" and I started my initial induction therapy only weeks before. I really had no idea what the future held. This year was my "first" following my autologous stem cell transplant (ASCT). I'm doing well and very thankful.

  • Tabitha said:

    Beautifully written column, Sean. I am thankful that you have "seen the dawn" since those dark early days. May your thoughtful words give hope to others who are experiencing their first myeloma Thanksgiving. Praying that you and your family have lots of wonderful holidays to come!

  • Hosanna said:

    My husband was diagnosed with multiple myeloma right before this Thanksgiving. In fact, the day before Thanksgiving, we found out he is standard risk, which was the good side of bad, thankfully. I am still in the stage of trying to figure everything out. I am overwhelmed with information overload. My husband has not been on the Internet at all, which is probably a good thing. For the past 20 days, I wake several times each night and it immediately pops into my head – this nightmare.

  • Myosotis said:

    I really liked your words - "you suspect it is so [that you and your family are loved], but to experience it is powerful". Yes, it is truly very powerful! Thanks for sharing your story.

  • Bob F said:

    Thanks for your story, Sean. Thanksgiving resonates for my wife and I as well. For Thanksgiving 2015, she ate dinner in bed due to her 5 thoracic and 5 lumbar fractures, although we did not know she had multiple myeloma until she had labs done the day after. She was immediately admitted to the hospital that I work at and received a definitive diagnosis by that afternoon. She received transfusions and chemo the following day, admitted to the very ICU I work in 3 days after being transferred for aspiration pneumonia and pleural effusions. She spent 21 days in the ICU, 2 months and 27 days total in the hospital. She has lost 8-1/2 inches in height due to the collapsing vertebrae and sternal buckling. We marked her one year with multiple myeloma this Thanksgiving.