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Mohr’s Myeloma Musings: Inspiration From Within My Family
By: Steve Mohr; Published: November 21, 2014 @ 1:33 pm | Comments Disabled
One thing that has enabled me to maintain a positive attitude while battling multiple myeloma is the realization that, no matter how difficult things become for me, there are others who are fighting far tougher battles than I am. I am inspired by their courage and resiliency.
Little did I know that I would get that inspiration from my immediate and extended family. I was reminded of this when a large post card arrived in the mail the other day.
Half of one side of the card showed a picture of a gorgeous little girl with big brown eyes, pacifier in mouth, staring intently straight ahead, almost as if she was looking directly at you.
The other half of the card read: “I’m Bryn. When I was just 10 months old, my parents were told I had an extremely rare and aggressive form of brain cancer (anaplastic malignant ependymoma). My cancer is very difficult to treat and early detection is crucial. The morning after my mom and dad were told of my diagnosis, I had to have surgery where the doctors tried to remove as much of the tumor as possible. I was then enrolled in an experimental clinical trial that included 197 doses of chemotherapy, 30 rounds of radiation, 46 nights in the hospital, 12,158 needle pokes for blood tests, 37 various tests, 54 clinic visits, 22 different medications and countless prayers. My family knew there were no guarantees given the aggressive nature of my cancer, but they never gave up and nor did I.”
The card goes on to explain that Bryn is in remission. It also encourages the reader to participate in a 5K walk to raise funds for the hospital where Bryn is being treated .
It wasn’t until my wife got home from work and said something like “Isn’t Bryn precious?” that I remembered that the adorable little girl on the card was my great niece. I had closely followed her bout with cancer while I was going through induction therapy and an autologous stem cell transplant.
As I struggled through the worst part of the transplant, I often thought of Bryn and how what I was going through paled in comparison to what she was experiencing.
From her parents and my sister (her grandmother), I learned the value of never giving up, which – as mentioned in the post card – they never did. The anguish and anxiety Bryn’s parents and my sister must have felt dwarfed anything my family and I were going through emotionally. Yet, in every conversation that I had with my sister during this ordeal, she was upbeat and positive, reflecting their attitude.
I have always marveled at the capabilities of modern medicine, especially after reaping the benefits of a stem cell transplant. What has been accomplished with Bryn gives me hope that the elusive cure for multiple myeloma may yet occur in my lifetime.
During the most difficult period of my induction therapy in late 2013, I learned that my youngest sister had been diagnosed with a meningioma, a type of brain tumor. While the vast majority of meningiomas are benign, the surgical procedure to remove them can be quite lengthy — up to eight hours. In addition, because it is brain surgery, the operation can be life threatening and have serious side effects.
The shock of hearing that my little sister had a brain tumor hit me harder emotionally than being informed of my own myeloma diagnosis. Fortunately, the tumor was benign, the surgery went well, and the side effects of the surgery have been manageable.
What impressed me most in talking to my sister in the days leading up to her surgery was her composure and sense that everything was going to be okay. She also had preparations in place to cover all eventualities.
Shortly after my stem cell transplant, my mother had surgery to remove a tumor beneath her ear. A biopsy had indicated that it was benign and was limited in its scope. During surgery to remove the tumor, however, they discovered that it had grown significantly, wrapping around nerves, making it impossible to remove it completely. Despite the fact that the pre-surgery biopsy had indicated that it was benign, a new biopsy found the tumor to be malignant.
Post-operative tests indicted that the rare cancer, adenoid cystic carcinoma, had spread to her lungs and spine.
Instead of receiving advice on quality of life issues and longevity, I was now giving it, hoping that what I had experienced would in some way help my mother decide what course of action she would pursue. My mother is the most spiritual person I know. Not surprisingly, at age 82, she decided against additional surgery and extensive radiation treatment. Instead, she opted for quality of life, instead of quantity, and placed her fate in a higher authority.
In a previous column [1], I have written about the fact that my wife was diagnosed with melanoma barely three months after I had been diagnosed with multiple myeloma. Her selfless attitude (she minimized the seriousness of her situation and kept the focus of our family on my treatment) reinforces my thinking that I am the luckiest guy alive.
People have complimented me on my positive outlook in dealing with an incurable disease. I am not as strong as they think I am. I just have been lucky to witness and experience inspirational behavior by members of my family as they faced situations every bit as serious as mine: selflessness, a calm and steady outlook, spiritual commitment, and boundless optimism.
I seek to emulate their behavior as I continue my journey with multiple myeloma.
Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here [2].
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