I have been gathering information and encouragement from this site since stumbling upon it a couple of years ago. Here is my story of multiple myeloma and spinal tumor.
2007 was an exciting year for my family. After every test imaginable, I was awarded a clean bill of health - cleared to donate a kidney to my 23-year old son!
However, in 2010 I started complaining of extreme fatigue, night sweats, and occasional, annoying, lower back pain. Being 52 years old seemed to be the going explanation, “You know, you are over fifty now.”
During the next two years, it was not alarming when periodic blood tests showed a slightly elevated creatinine - remember, my remaining kidney had to compensate. The intermittent back pain, easily a result of an active lifestyle and winter slips, was managed with regular visits to my chiropractor ... until late March of 2013.
The pain changed from problematic to unbearable. Chiropractic manipulation, massage, acupuncture, and cupping would no longer offer relief. Prescription pain killers, heat and ice packs became close friends over the next few weeks while more tests ensued. My blood work was still relatively unremarkable, and, so far, nothing claimed responsibility for the migrating pain in my mid-section. When two weeks passed after my back x-ray, with no call back, I believed this was yet another negative test. Daily responsibilities didn't stop while the medical world trudged along, so, armed with lots of pain meds I carried on. Constipation joined the party.
Fate intervened on a tranquil snowy Sunday in rural Canada. Last chance of the season for a snowmobile run, and I wouldn't miss it. My enthusiasm was short lived; my back screamed more with every mile. Soon after I began sleeping on the couch, in a sitting position, propped up with pillows, or in my car with the seat reclined. A back x-ray was ordered - wait, didn't I just have one 2 weeks ago? Turned out it was never read. (WHAT??)
Work ended abruptly the morning of May 15th, 2013 when weird sensations started in my legs and spine. A trip to emergency followed; the pain was excruciating. I could neither sit nor lay down without being heavily sedated. An MRI was needed, pronto, but that was a luxury for small-town hospitals that share a traveling MRI machine. Thankfully, in just a few hours, the neighboring hospital would have the machine. This test would show: a spinal tumor, a compression fracture at T9 with soft tissue involvement, several bone lesions, a 9 inch kink in my bowel, and multiple myeloma. I knew I was in deep trouble when I lost all feeling in one foot, and then the other. In horror, and disbelief, I stared at my legs as the loss of feeling slowly inched toward my thighs.
By now it was the following evening, and precious hours had crept by. Relieving the cord compression, within 24 hours of onset, was my only chance of regaining any mobility. With luck, this procedure would also release the bowel blockage. I was transported to the nearest surgical center for emergency back surgery. Upon waking, my surgeon confirmed that he had removed 2 1/2 cups of tumor and preformed a spinal fusion T7 - T11. The bowel blockage had indeed reversed - the paralysis had not.
A cocktail of Elavil, baclofen and gabapentin (for neuropathic pain) and Dilaudid (hydromorphone) (for back pain) were used. A large back brace (no lifting, twisting or reaching) would be a constant part of my waking attire over the next 3 months. During this time, I would remain in hospital (rehabilitation ward) for intensive physical therapy piggybacked with 4 rounds of chemotherapy (cyclophosphamide [Cytoxan], bortezomib [Velcade], dexamethasome) and radiation.
Choose your battles? I could do nothing to change my myeloma diagnosis, but I would challenge the extent of my paralysis – quality of life. Nerve damage repair was possible up to 18 months after the injury. So that would be my focus, build leg muscle and relearn the mechanics of walking while the doctors planned for my autologous stem cell transplant, just six months down the road. My proprioception (knowing where your limbs are in space) had been severely impaired. This meant I needed to see my body move (starting with my big toe) in order to know that it was actually moving. With constant practice, I learned to move my legs, how to swing my body out of bed, and how to walk with assistance.
Unfortunately, my quality of life has changed drastically since the spinal cord compression. I guard my legs and lone kidney like that last piece of chocolate cheesecake, hidden in the back of the fridge. It remains a daily workout to meet my basic needs. And yet, with the ongoing help of my physical therapist, I have progressed: from a wheelchair, to a two-wheeled walker, then elbow crutches, and now a cane. I can walk for 10 minutes, with a cane and close concentration (before needing to sit due chronic pain), and I can navigate stairs that have a railing. If I suspect an activity will surpass any of my limitations (smooth surface, seating, & time), I use my four-wheeled walker. No more shopping sprees. Although the 18-month mark for nerve repair has expired, I continue to challenge my chronic pain, balance issues, flexibility, and independence. I now use Lyrica and Nabilone for pain This is my new normal.
Oh yes, I mustn't forget multiple myeloma. The big kahuna! I had my transplant on November 20, 2013. Everything went according to plan. As the days passed and my immune system lowered, the side effects hit full force. Diarrhea, nausea, vomiting,and mouth sores, I had them all. This was a messy time! Remember, at this point, it was a struggle just to get out of bed, or rise from a chair, and I shuffled with a two-wheeled walker to get to the washroom. I was absolutely exhausted. All my meds were given intravenously because I was unable to swallow anything. I was dying and too weak to care. And, just like that, ... I rallied. Each day was better than the one before, and in time for Christmas, I went home.
I am in remission; the cancer is tucked away for now. I take a daily dose of 10 mg Revlimid and monthly Zometa. Lyrica seems to help the constant burning in my feet and Nabilone works for back pain.
Thanks to the love and support of my partner, family, and friends, I face these challenges, and embrace the laughter in each day ... so ... here I am.
Forums
7 posts
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vanessa - Name: Vanessa Hargrove
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: So here I am
Thanks for sharing your story and journey to date, Vanessa. I can hardly imagine the trauma you have had to endure, and yet you are a positive person in your outlook. I hope that the future holds more improvement for you and that the myeloma stays in remission for a long time too.
I also suffered vertebral fractures, but not to the extent of injury that you have had.
Best wishes to you, and take good care of yourself!
I also suffered vertebral fractures, but not to the extent of injury that you have had.
Best wishes to you, and take good care of yourself!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: So here I am
That is some story. You have been through an awful mess but show amazing strength to pick up and push forward to improve your condition. I hope you make the remarkable recovery to match the remarkable challenges you have faced and remarkable efforts you have made and continue to make towards your health and quality of life. Thanks for sharing!
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: So here I am
Wonderfully written. Most days you cover all of your pain with a smile! That is the truest measure of a person dealing with chronic illness!
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Emily
Re: So here I am
Vanessa-
Never lose the hope that you will regain more strength and sensation in both of your legs even though more than 18 months have passed. I have worked with a few people with spinal cord injuries who were labeled as having complete paraplegia who regained movement up to 10 years post injury. So there is always a possibility that it will happen for you, too.
All the best for your continued improvement,
Nancy in Phila
Retired PT
Never lose the hope that you will regain more strength and sensation in both of your legs even though more than 18 months have passed. I have worked with a few people with spinal cord injuries who were labeled as having complete paraplegia who regained movement up to 10 years post injury. So there is always a possibility that it will happen for you, too.
All the best for your continued improvement,
Nancy in Phila
Retired PT
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: So here I am
Thanks for the comments! This is exactly what I was talking about, encouragement and information. It is great to learn that someone (nstewart) has seen firsthand what time, perseverance, and a skilled PT can do 
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vanessa - Name: Vanessa Hargrove
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: So here I am
Amazing, Nancy! Since you were a physical therapist, I know you worked with and helped many people.
Cathy
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
7 posts
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