Mohr’s Myeloma Musings: Inspiration From Within My Family
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, 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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Well put Steve. I have a sister who is my greatest inspiration. She has been battling breast cancer for 12 years since she was 30 years old. It has taken over her whole body now. Brain, liver, lungs, and spine. Her time is growing short now, yet she continues to fight and think of me and others before herself. My battle with multiple myeloma pales in comparison to what she has been through. Her message - FIND YOUR JOY! I will do my best to take her advice.
Great perspective Steve. My husband has only begun on the myeloma journey, being diagnosed May 31st. And always keep looking forward and upward.. You can always find joy in the journey if you try.
Well said Steve. Perspective is always valuable.
Steve
Your article brought tears to my eyes. I am not the emotional type, but the treatments you described for others and family were heart strengthening. When I was 9 months into my once-per-week myeloma treatments with melphalan, prednisone and Velcade, I was feeling mentally exhausted. Then my wife and myself met a woman who had been undergoing breast cancer and other cancer treatments for 10 years. She was happy and smiling, spiritually and physically strong. She convinced me that women are definitely stronger than men, both mentally and physically.
I realized I was not relying enough on my spiritual side for strength. I will never forget that lady who strengthened me for the road ahead. Thank you Steve for offering us mental, physical and spiritual strength to continue on the road ahead.
Amen to this, I was diagnosed at 44 and when I read about children with cancer who never got a chance to live to even a tenth of that, it's painful and I feel guilty that I got to live this long. Counting my blessings.
You are so right Steve! I simply can't stand to see another in pain, but the children just tear me up. I have cried over children I don't even know and have never met, simply because no child should EVER have to deal with cancer and the other health problems out there. I know how I felt during my treatment and SCT, and can't imagine that being thrust upon an innocent child.
Maybe somehow through this battle, the chemo, the SCT, or maybe the cancer itself has softened me and brought more of an awareness of others around me who are suffering. I don't know. I DO know, however, that the the seemingly weakest children are always the strongest. We can ALL take a lesson from that.
It's all about keeping things in perspective and you have done a fine job! Thanks for the reminder!!
Bob Marley stated, "You never know how strong you are until being strong is the only choice you have."
I am sorry to hear of all the cancers being fought in your family, Steve. I hope that all do well, and that you have a better year ahead of you. It sounds like you are very supportive of each other, and that will be a great help .
I didn't know Bob Marley said that but he was very right. There is no choice when faced with myeloma or similar.
My daughter who has myeloma was born with a club foot. We use to go to Children's Hospital in Philadelphia and, one day when she was 4, we saw a boy without a leg. She turned to me and said, "At least I have my leg." Although she is going through a really hard time now, she still has that perspective on life. I had breast cancer 9 years ago. My husband was diagnosed with prostate cancer 3 months after our daughter was diagnosed with myeloma. Doctors worked with us to get him treated before she was to have her SCT. He is fine, I am fine. To see our child have to deal with myeloma even though she is grown is the worst thing we have ever had to deal with.
Great post on perspective. We cannot expect the world to center around our problems. This really became clear to me a few days after I was diagnosed when I saw 40,000 men, women and children die is a single day from the tsunami in Japan on the television news.
Kim - We are both lucky to have sources of inspiration within our family. It is so easy to become self-absorbed with this disease because it is incurable that we lose sight that there are cancer patients other than those stricken with mm who face equally difficult situations. I hope that what time you have left with you sister is joyful.
Sharlene - Living with this disease is tough, but I have had countless joyful moments come my way in the last two and a half years. I wish your husband the same.
Becky, Eric, and Scott - Andre Agassi once said "Image is everything." So is perspective!
Mark - I know how you feel. I will never get used to seeing children cancer patients in my visits to my cancer center.
Mary and Margaret - I have never been a Bob Marley fan, but I love his statement and find it one of the most profound I have heard.
Nancy - we are certainly looking forward to "out with the old and in with the new" come December 31st!
TJ13 - I am convinced that watching a loved one deal with sickness is tougher than living with an incurable disease.
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page