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Sean’s Burgundy Thread: My First Myeloma Thanksgiving
By: Sean Murray; Published: November 24, 2016 @ 1:00 pm | Comments Disabled
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 [1].
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