Myeloma, Party Of Two: Trudging Through Winter
Published: May 22, 2014 3:47 pm
After my husband Daniel’s initial diagnosis with monoclonal gammopathy of undetermined significance (MGUS) in 2012, I couldn’t shake the feeling that the “treatment” plan of watching and waiting, which had been suggested by a local hematologist/oncologist, was not enough.
The hematologist/oncologist wasn’t a myeloma specialist, and he wasn’t connected to a research hospital. My mother had ovarian center in the 1990s, and I know what an impact it had on her recovery to have had a research hospital involved in her treatment.
I believed that we couldn’t get the care we needed in Fort Worth, where we were living at the time. However, I had no idea how I was going to convince my husband to leave our jobs, house, family, and friends – possibly even our financial security – to move to Houston so that he could be treated at the MD Anderson Cancer Center.
I think I knew on some subconscious level that we would need to be there for ongoing, long-term care. (In hindsight, I must admit that it’s strange how it never occurred to me that so many patients at MD Anderson come in for their appointments from out of state).
I didn’t say anything to him about my concerns, but I hoped that a way would present itself. Daniel had lived in Houston when we met. He left a solid career in the energy industry to move to Fort Worth and marry me. I had no idea if he’d be interested (or able) to return to his former business.
Somebody must have heard me because opportunity knocked on our doors in April of 2012, just a few short weeks later.
We were in Houston visiting his family for a birthday celebration when we learned from a friend that there was a high demand in Houston for people with Daniel’s professional expertise.
On the car ride home, I told him that I had been thinking about us moving to Houston. I explained that I wanted him to find a doctor at MD Anderson, and that I’d been looking for the right opportunity. I told him that my only “home” was where he was, and that we needed to go.
We decided that Daniel would apply for a job in the Houston area, and that, if he was able to get a solid offer, we would move.
The next couple of weeks were a whirlwind of chaos. The old adage of “Be careful what you wish for” came true for us.
Daniel interviewed and received multiple job offers. He accepted one of them. That’s when we decided to move to Houston. We put our house on the market, and we even had an offer submitted before the ‘For Sale’ sign was in the yard.
Thankfully, everything was falling into place, but it was a difficult transition emotionally. We underwent a total, unplanned life change in a very short time.
Within four weeks, we left my family, treasured friends, and our century-old house. We left successful careers. We left the little Italian restaurant where we had our first date, where I said yes to his proposal, and where we had our rehearsal dinner. And, with poetic justice, on a particularly stormy, grey day, we packed up the car – our four howling cats – and we drove away in the rain. Seeing our house in the rearview mirror, I knew it was the right path, but that didn’t seem to make it much easier.
The real winter storms were yet to come.
Two and a half months later, we met with Daniel’s new myeloma oncologist at MD Anderson. Nothing could have prepared us for that day. There were a dozen buildings and numbered parking lots. There were “sick” people everywhere. My heart broke for them. I saw them in wheelchairs, bony and feeble; watching them take each arduous breath as if it were an exercise of personal will. I smiled and put on my best “can-do” attitude, but I kept thinking “This isn’t real. I will wake up from this dream.”
To make it worse, I saw the looks of empathy that they gave us. You’d see their eyes scanning for the one wearing the wrist band, and they’d look at you with a sympathetic smile, and you knew they were thinking, “Poor thing. They’re so young.” Those indescribable looks of pity covered me all over. To this day, after so many visits there, I never get used to the looks.
In addition to the regular blood and urine tests, the oncologist said that Daniel would need a bone marrow aspiration, along with an MRI with intravenous dye and full skeletal x-rays. Remembering our previous doctor’s advice, I immediately questioned these plans. “Will the bone marrow procedure be done with anesthesia?” (No, it wouldn’t.) “Our other specialist called this procedure invasive and unnecessary. Why do you need to do this if Daniel has MGUS?” (There is a good chance that it isn’t.) On and on. I felt like a lioness defending her cub.
Daniel put a stop to it. He simply, bravely said, “No problem.”
I tried so hard to choke back tears. It was the hardest of all the caregiver’s lessons: I had to trust strangers with my husband’s wellbeing. They might hurt him, and I couldn’t do anything about it. It was a feeling of helplessness that I still feel today. Their only interest in him was a vocational one, and not based upon a lifetime of love. I simply wasn’t able to save him, and the weight of that crushed me like gravity.
Two weeks later we returned for the results. Daniel was lesion-free, but he was diagnosed with smoldering multiple myeloma. His bone marrow aspirate was positive for 23 percent of clonal plasma cells with translocated 11:14 chromosomes, and an IgG monoclonal paraprotein (M-spike) of 2.0. He was also positive for Bence Jones proteinuria.
I was in disbelief. It was supposed to be MGUS. I heard myself asking, “Can you re-run the numbers?” It was definitely smoldering myeloma, she said. I began to cry. I hadn’t meant to cry. I had even bargained with my sensibilities that I would never gripe about the dirty clothes hamper again if I could just keep from crying when we got the news. If only I could be like Daniel, “strong like bull.”
It was all a blur after that. The doctor discussed staging and treatment options. Multiple myeloma was “incurable” but “treatable,” she said. I asked myself if that was some semantic jargon that oncologists learn in medical school to make a diagnosis seem more upbeat. How do you “treat” a disease for which there is no known cure, especially when some of the “treatments” can kill you?
We went home feeling the winter storm that started with his MGUS diagnosis five months earlier had intensified. It was a dark time for us both.
I was in a temporary apartment in a large metropolitan city, and I felt alone because my family and friends were all in Fort Worth. For weeks I stayed cooped up in our little apartment. I wasn’t ready to leave my self-imposed cave dwelling (the apartment itself was shaded by trees, and there were very few windows). I spent my days reading about multiple myeloma online, trying to find a role for myself as ‘caregiver,’ and convincing family that everything was ‘fine.’
I’m thankful that Daniel had a new job to distract him during those early months. The mental discipline required by his work must have been a welcome diversion. I knew that he felt sorry that all this was happening to us and that he wondered how long he’d have before he became really sick.
I tried not to think about the future and I counseled my husband to do the same. However, it was unrealistic for either of us not to wonder what the future would bring. Would we be preparing for a stem cell transplant next year? How would I support us on my salary alone? How long would we have together?
I willed myself to wake up from the dream, but I never did. This was our life now, and despite everything, we were grateful to have it.
After a few weeks, our outlooks improved, but I still needed to find a permanent home for us and a new job for myself. In addition, there was an endless stream of doctor’s visits, lab reports, and test results that seemed to punctuate our days.
We had a long winter to go before we’d see spring.
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