Last month I flew west to speak to a support group in Spokane, Washington. While I was there, I met an exceptional multiple myeloma survivor, John Knighten.
John shared at the meeting how he was preparing for the fight of his life–a tandem auto/allo transplant. John is only 44 years old, yet he has endured so much. John is a true multiple myeloma warrior.
John looks so “tough” in this picture–and he is. But when you meet him in person, a more sensitive, compassionate side shines through. And John is one of the most optimistic, bravest guys I think I have ever met!
After the meeting, I asked John two things: If he would write a brief history, recapping his life since his myeloma diagnosis, and if I could follow his upcoming auto/allo transplant therapy and write about it in real time.
One week later, I received an email from John. In it I found a long and detailed account of his life up to now. I emailed back, kidding about how he started his story “from my youth.” But I think it’s interesting, so I’m going to post John’s story intact, with only a few minor edits.
Last week I featured a two part feature about Ken, a 76 year old, newly diagnosed patient:
Patient Snapshot: Ken from Florida
Patient Snapshot: Ken from Florida (Part Two)
I thought it would be interesting this week to balance things out by sharing a younger patient’s experience, too. So here is Part One of John’s Patient Snapshot:
Pat. I’m not exactly sure what you need as far as background, so I’ll try to start from my youth. I was born in 1968 as the 11th of 12 kids–I guess if you’re looking for a stem cell donor the bigger the better. My father died in 1973 of a brain aneurism. He had a rather rough life, enlisting in the Marine Corps at the age of 16 in 1943 till 46. He was recalled for the Korean war in 1950 as well. My father saw quite a bit of combat so I’m sure he had what they now call delayed stress syndrome. After my father’s death with government and church help, my mother got her nursing degree in approx. 3 years, and began a career as an RN with an orthopedic sub-specialty.
We moved to the Wenatchee, WA area in 1977 and mom began work at Deaconess Hospital in Wenatchee, who later were taken over by Central Washington Hospital. We attended Eastmont School District and Church. Through Church we met the Gary McLeod family, his wife, Norma Jean was one of my first Sunday school teachers. Gary a Deputy Sheriff with Douglass Co. took a liking to my family and over time became a sort of father figure to the younger brothers of our family. Ultimately his children became as close as little brothers and sister to me.
School was reasonably easy for me. I could have put more effort into it, but I’d say I was an above average student. In High School, my effort wasn’t near what it could have been. At times I focused on working to help support myself.
Money was always tight with a large family so if you wanted certain things, you had to help by working for some of them. I found myself in the party crowd.
Sports wasn’t my big thing in High School, with the exception of wrestling. Maybe it was some of the childhood fights with siblings and bullies helped to prepare for it. That was my one sport ambition back then. I also started developing an interest in a couple of career paths. One was in the Marine Corps, attributed to the father I barely knew and came to represent a way to learn more about his time in the Corps.
The other was in the Fire Service. I had an older brother (who was also a Marine) who was a volunteer firefighter in the old family home of Kalama, WA. I’d admire the shiny red trucks when we visited. In High School a friend of mine asked for a ride to the Wenatchee Fire Dept. for his Explorer Scout meeting. I don’t know if it was the full time paid status or the fire pole, but I joined up and won praise from my mother. She always said when a fire started around town it couldn’t be me ’cause I was at the fire house! Close to graduation I was leaning toward the fire science school in Tacoma, but father figure Gary talked to me about listening to all the times I talked about wanting to be a Marine. He also stated that it was rare for too many 18-20 year old to be hired as Firemen or Cops, it would give me plenty of time to experience the Marine Corps.
I enlisted in April of 86 on the delayed entry program with a enlistment date of 28 Dec 1990. My Mom wondered why I had to wait that long. I told her I needed to graduate and wait for an opening in my most desired field to open. Without signing a 6 year enlistment my desired field of Crash Crew (military airfield firefighting) wasn’t guaranteed with a four year deal
After my time in the Marine Corps–and following the short term marriage to my first wife–I returned to Washington State to pursue my career as a firefighter. I went into the Resident Firefighter Program with Pierce Co Fire Dist. 9. They later consolidated with other departments and became part of Central Pierce Fire & Rescue just after I was hired by the Spokane Fire Department as a career firefighter.
I spent a year as a recruit firefighter, where my job would become permanent as long as I passed my recruit test. I was assigned to Ladder Company 2. In the majority of departments ladder and rescue crews tend to draw the more aggressive types.
After my promotion to Fire Equipment Operator I spent a year as a relief driver, filling in where the vacancies occurred and one year as the driver of Engine 8. I enjoyed those 2 years, but I really wanted to get back on a ladder crew. I made it onto ladder 4 in 2002 and also onto the technical rescue team assigned to station 4. These were some of the best years of my fire career. Until new year’s day of 2010. I wasn’t feeling all that great when I left for duty, but I wasn’t going to pass up double time and holiday pay after Christmas.
As the shift progressed my sore throat became worse and after bed time it was becoming more difficult to breath. I finally realized I had no business being on duty and woke my Lt. He saw how bad I looked and awoke our paramedics who said driving myself home wasn’t going to happen. I refused to go by ambulance so the engine crew drove me 8 blocks to the nearest ER. The ER staff looked me over and was surprised I was breathing on my own. They said I had epiglottitis, a bad throat infection and would need to be intubated soon.
Eventually I asked to be tubed. I awoke a week later thinking I had dodged a bullet, but was told I had been diagnosed with Multiple Myeloma. Thankfully my wife felt something worse was going on than a throat infection and finally convinced a pretty sharp doc to look over my case. Looking at the numerous cases of pneumonia within the previous year and the anemia my primary overlooked, a bone survey was done and multiple lesions were found.
My local Oncologist felt I needed to go to the nearest center with a leading myeloma specialist, so within two weeks of discharge from the hospital my wife and I made the 5 hour drive to the Seattle Cancer Care Alliance, made up of Fred Hutchinson Cancer Research lab, University of Washington Medical Center and Seattle Children’s Hospital.
I had my initial consult with Dr William Bensinger, who advised me he thought my age and otherwise good health, and based on statistics 2-3 matched family stem cell donors, he thought this would be my best chance for either the longest term remission, or even cure. After checking in at SCCA, I told my assigned transplant doc that I wasn’t real comfortable with the risks of the donor transplant, so we made the decision to go with an autologous stem cell transplant instead.
I sailed through my auto transplant with only 5 total days inpatient. I was discharged for home on day 28 post transplant. By Jan 2010 I was released from light duty back to full duty on Ladder company 4, and I couldn’t have been happier…
Ignorance can be bliss–especially for a multiple myeloma survivor! I’m afraid that John’s myeloma journey would become far more difficult soon. Tune-in for the second part of John’s story tomorrow.
And if any of you would like to email me your myeloma stories, please do! I know from experience that there are things we can learn from every patient’s story.
But if you do, think about emphasizing the parts of your journey that would be most helpful and inspirational to your fellow patients and caregivers. Don’t get too bogged-down with the numbers. And YES! Caregivers are encouraged to write in, too!
Feel good and keep smiling! Pat