She had been diagnosed in October of 2006 and, luckily, that first year was largely uneventful in terms of any serious impact from the multiple myeloma. But within a week of being in Colorado, my mom was unpacking her stereo when one of the vertebrae in her spine “popped,” as she said. Myeloma tends to attack the spine, pelvis, and ribs, making them extremely susceptible to fracture. (For more info, see: http://www.themmrf.org/multiple-myeloma/symptoms/bone-lesions/).
Within moments, my mom was cast into the very painful journey that multiple myeloma is known for, but at this time, there was a viable solution. Through her oncologist, we found a neurosurgeon who performed a kyphoplasty surgery on her crushed vertebrae (http://myeloma.org/pdfs/Understanding_Kyphoplasty.pdf). The surgery went well, and she found relief from the pain.
Down the road, she wasn’t so lucky. With her second spinal fracture, the kyphoplasty surgery did not go well. She was left with horrific spasms in her upper legs that would come on suddenly and then seize her like a demon until they were over. Eventually, she found relief, but those first two years on the multiple myeloma rollercoaster trying myriad pain medications were living hell, to say the least.
When you are cast into such a journey, doctors and nurses become like family. They are your care team. You have to find the good ones who you can work with because your loved one’s life and quality of life are at stake. Firing doctors from your team is not uncommon.
One morning, I was driving mom to her appointment in Boulder to meet with the pain doctor. Curled up in the passenger seat holding her side, she looked like a severely injured hawk. The pain radiating out from another fracture was unbearable. She just wanted to die.
Her doctor increased the dosage of Lyrica that she was on and gave her a pain cream that ended up being a life-saver (more on that in another post). But over the next few months, each time we saw the pain doctor, she increased the dose of Lyrica as the pain worsened. My mom dutifully took it, keeping a record of each medication she took and when (a critical part of the tracking process).
When my spouse and I arrived for Easter weekend (2008), we found my mom in bed and decidedly not herself. She was ashen and listless and confused. I couldn’t get her off the toilet and back into bed. She was in a complete stupor. I wondered if she had had a stroke or if something else was permanently wrong.
We called 911, and she was admitted to the hospital, a scenario we would face countless times over the years—all new doctors, all new nurses, all new aides—though eventually we would get to know some of them well. But often, no one knew my mother except for myself, my spouse, and her friends and other family members when they would visit.
Is this her normal mental function? Is this her typical personality? Can she talk? Can she walk on her own?
Milly, what day of the week is it? What year? What is the name of our president?
In the beginning, these questions threw me. Of course she can walk, what are you talking about? Of course she can talk. She has a master’s degree and had a successful career as a counselor. She made her living talking. But amidst a sea of new faces, I was the one holding the memory of who she was. She was not in a state to represent herself.
At the time, my mom was grabbing snippets of lines from commercials and repeating them in an endless stream of babble. I was pretty freaked out. I felt as if I had suddenly lost my mother. Would she ever come back?
When a neuropsychologist finally evaluated her, he immediately dialed in on the Lyrica. In some patients, it can cause confusion, delusions, dementia, loss of memory, shakiness, drowsiness, and the types of mental oddities we were seeing in my mom. In particular, any negative side effects can be worse in those who are 65 and older since they metabolize and eliminate drugs more slowly. He took her off the Lyrica and within a few days, I had my mom back.
She rarely remembered these bouts afterwards, and I didn’t want to remind her of them, but I kept mental and physical notes. And I became more and more adept at, no matter the circumstance, holding on and fighting to get her back to her mental, emotional, psychological, physical, and social baseline. Things get murky in the thick of the battle, since having cancer throws you into a ‘new normal.’ Pretty much everything is in flux and out of control. But riding those waves of change while keeping your eye on the ball—being a keeper of the baseline—can sometimes mean the difference between being able to hang out and laugh and talk with your loved one later and them being forever lost in a mindless, crazy stupor.
Needless to say, we fired another doctor…