I recently met Ken while speaking to a support group near Clearwater, Florida. Ken is outspoken, animated and full of life! When I asked him to become a part of my Patient Snapshot series, his enthusiasm burst through.
So it shouldn’t be a surprise that the myeloma story he would like to share with you here is far more than a snapshot.
That’s OK! I found that reading about Ken’s successful therapy–including kyphoplasty–is both informative and inspirational. One thing he doesn’t mention is his age. And that’s not a surprise, either! Because the guy seems ageless!
I hate to guess, because we all know how that can turn-out! I will email him and see if he will share that information. For now just think of him as an atypical, well traveled gentleman with an inspirational tale to tell.
Here is Ken’s myeloma story:
WHAT ITS LIKE LIVING WITH MULTIPLE MYELOMA?
WHAT IT WAS LIKE AT DIAGNOSIS
November 2010 was a good month. I rode my bike over two hundred miles and fished a lot—paddling a kayak four miles through Spartina grass one day in pursuit of redfish. Life was good—except for the pain in my side.
My internist said it wasn’t a broken rib, so I went to a chiropractor. Bad idea!
Mid-December my radiologist noted multiple fractures of the ribs and sternum. After a few more X-rays he noted multiple lytic bone lesions indicative of multiple myeloma. A Bense-Jones test confirmed that initial diagnosis. MRI and a CAT scan revealed compound fractures of the T-4 and T-12 vertebrae. A pleural infection rounded out the picture. I thanked my internist for the diagnosis and mentally processed the bad news in about five minutes. Then I experienced the emotional processing of this game changing diagnosis. Fear of the unknown slammed me. Self-pity attacked me. Pain punished me.
A key decision at this point was to build a competent and trusted medical team. I also expanded that team to include advisers and mentors from other perspectives.
Another vital issue was to gather the right amount of multiple myeloma data to make some informed decisions. My son coached me to see myself as an “outlier” and not get tangled up in statistics (especially morbidity stats). A daughter suggested I start a gratitude list. Another daughter found a chair I could sit in and helped to rearrange the house for my situation. My wife, Ann, became a matchless caregiver—never doing more than I wanted, needed, or could use. At this time, I set the vision, mission, and values for this stage of the journey.
1-18-2011 I was diagnosed with stage 3 a (Durie-Salmon), Standard Risk multiple myeloma.
A bone marrow biopsy (lots of fun) confirmed that the percentage of bone marrow involvement was 65%. I recall not being able to get off the gurney without help of wife and son—leaving hospital in wheelchair. The good news was that I was accepted into the Revlimid (lenalidomide) clinical trial. I was to take a chemo pill each day for 21 days and then rest for seven. A monthly infusion of Zometa was prescribed to strengthen the bones.
By February I had fractured two more vertebrae and was unable to get out of bed by myself. Muscle relaxants and pain killers were a daily routine. Sleeping in my bed was out of the question and riding in a car was excruciating. Immune system was compromised and I was advised to avoid crowds.
WHAT HAPPENED AT MOFFIT CANCER CENTER
Celgene Pharmaceutical sent the first bottle of Revlimid and I started on the multiple myeloma marathon. This isn’t a sprint! Fatigue was about the only adverse side effect. Zometa infusions were accompanied by flu-like symptoms, but we found a way around that. Bones got stronger. The Revlimid went after the rogue plasma cells and the numbers on the key markers started to fall (Urine M-Spike, Lambda Free Light Chain).In early March my wife and I attended the International Multiple Myeloma Foundation’s Patient/Caregiver Seminar in Boca Raton. There we found awesome support, important resources, accurate information, presentations by the finest oncologists in the country, and above all—hope.
But we still had the pain thing to deal with. Talking with patients at Boca Raton convinced me to consider kyphoplasty. March 2011 Dr. Vrionis performed kyphoplasty on four fractured vertebrae. I went home the night after the surgery and that was the end of the muscle spasms, the pain killers, and the muscle relaxants. I had lost considerable muscle mass; however, a stationary bike got me ready for a bike ride along the waterfront. Sheer joy! I extended the distance to nine miles a trip and enjoyed every sight along the way.
So what helped Ken most to deal with his diagnosis? Tune in tomorrow!
Feel good and keep smiling! Pat