1937 / Class of '82 / Type: Kappa Light Chain / Died: 9/99
My one hope is that someone who was recently diagnosed with Multiple Myeloma (MM) will read this and realize that it is possible to live with MM. When I was first diagnosed with MM I was in such bad shape I would cringe when I heard the expression "Quality of life." It took awhile but I got and have a very good quality of life.
As a 16 year MM survivor it is difficult to write this narrative. Not because
of emotions but because of accuracy. Especially the early years. I can remember
some things but I have to rely on my wife's memory for other things. It seems
hypocalcaemia affects one's memory. I wish someone had told me that back then. I
thought I was losing it. My wife assures me that there are some things I
wouldn't want to remember.
I was 45 when I was diagnosed with MM (Kappa Light Chain). It was a fiasco that almost cost me my life. We were living near Stuttgart, Germany. I was associated with, but not in, the U. S. military. When I complained of extreme lower back pain it was diagnosed as stress and Valium was prescribed. Stress was the medical fad of the time. Even now MM is often misdiagnosed. Military doctors usually see young patients and I was told that MM was older person's disease. Unfortunately, they are now finding more and more young people with MM.
After no relief of the back pain, I requested an X-ray. My friend, a doctor at the clinic, saw me with the X-rays and asked to see them. It was his telephone call that alerted them to check for MM. About that time my urine had turned cloudy. Hypocalcaemia had set in. That was bone calcium in my urine. MM was diagnosed and I was near death. I was immediately sent to a hospital that had a Hem-Onc specialist. As I wasn't expected to live, my 2 daughters were taken out of school and they, with my wife, took up residence near the hospital. While the children did independent study my wife did volunteer work in the hospital.
Fortunately for me, the military Hem-Onc was an outstanding doctor. My wife was
told I probably wasn't going to make it through the next few days, maybe even
hours. First my kidneys were the main concern because of the hypocalcaemia. The
MM would have to wait. Once the kidneys got "flushed" out they started
chemo. I was put on Vincristine, Cytoxan, Alkeran, and Prednisone (as I recall.)
The doctor did try Adriamycin but I had a reaction to it. This chemo regime
became my chemo over the next 14 1/2 years.
The doctor called me his miracle patient. After about 6 months I felt I could return to work. I had a desk job as a Computer Programmer Analyst. My office was on the third floor of a building without an elevator. To that add the fact that the bathroom was on the second floor and I was on crutches. I do believe all these challenges were things that straightened my body, my bones, and my resolve.
With a very understanding boss and fellow workers, I was able to work and my progress was amazingly fast. Eventually the crutches were put away and I had only a back brace to hold me up. The compression fractures had reduced my height by about 2 to 3 inches. Currently I am actually 8 (yes, eight) inches shorter than before MM. For those of you interested, the most recent Bone Density Study of my spine showed that I have a density value of 84% of "age-matched individuals." I continued working with periods of active MM and periods of remission. Usually something like one year of chemo and one year of remission (plus or minus a few months.)
My military doctor was eventually transferred. I did not care for his replacement so I transferred my medical treatment to the Katerina Hospital in Stuttgart, Germany. There they continued my same chemo regime until I had a serious relapse. This required radiation of the lower back. After recovering from that, things fell back into the same on/off routine.
About 6 years after being diagnosed I felt it was time to return to the United States. I knew it would be easier to relocate and change job assignments while I was in remission. Even though I felt pretty good, overall, I knew I would eventually have to stop work.
I transferred to a Washington D. C. contract that turned out to be one of the most stressful jobs of my life. Stress is one of the enemies of MM. My Hem-Onc strongly suggested I go on disability. My disability was approved and we moved to California.
Now health insurance became a problem. My wife had to go to work so I could be covered as her spouse. The coverage was good and I found an excellent Hem-Onc. I was still in the one year on and one year off (approximate) cycle. I love to travel and by timing it right we were able to take many trips. To many it appeared, and still does appear, that I am not ill. (Except that I am now 5 feet tall and have a "buffalo hump" back.) I do everything to try not to have MM slow me down. By listening to my body I can control my activities with rest and medication. With me at home being the "housewife" and my wife out in the work force it's been a complete role reversal. But that's another story.
After 14 1/2 years on Alkeran my Hem-Onc doctor felt that it had been long enough. Extended use of Alkeran could produce drastic side effects. Since I was in remission perhaps it was a good time to start Interferon. I would administer myself shots 3 times a week. I hate needles but it's amazing what you can do when your life depends on it. Unfortunately, I still went from remission to active MM, even while on Interferon. It was then I started to think about an Allo BMT.
About this time the "good" insurance I had became "bad" insurance. My wife's employer was able to cut back expenses by eliminating some options within the health insurance program. I paid extra to continue seeing my regular Hem-Onc. He had been observing and treating me for 8 years. Next we found that the insurance options were trimmed even more. I had started Aredia and was considering a BMT. Because of expenses I had to join an HMO and no longer see my "regular" Hem-Onc. Through the HMO I did get a referral to visit Dr. Schiller of UCLA. He agreed that Alkeran must be stopped. He then concluded that I was not a candidate for a BMT. He felt that I probably would not live through the chemo preparations for the BMT because of my long use of the Alkeran. He also felt that if I did live through the preparations the chance of a successful BMT was next to none because of the 15 years of effect the MM had had on my whole system. He suggested Decadron, (pulsed; 4 days on, 4 days off.) I tried the pulsed method and had what I consider bad side effects. When I changed to a stronger dose of Decadron for 4 days on, 4 days off, and then 4 days on again, each month my side effects were greatly reduced.
I was on Decadron for 7 months and it was not effective. I stopped Decadron. With MM active and Interferon and Decadron not working I have had a big problem with anemia. To the point of needing a transfusion about every month. When it was clear to me that Decadron was not working I signed back onto the Hem-Onc List to see what was new. I learned that there was now a Myeloma List. Through the Myeloma List I learned that Thalidomide was the new "hot" topic. The day I went into my Hem-Onc's office to ask about Thalidomide she was about to suggest it.
So that is where I am now. My transfusions have increase to about every 2 weeks and my protein in urine count is higher than it has ever been since my initial diagnosis. It has been over one year since I have had any effective chemotherapy. Now the doctor has taken the necessary steps to become a registered Thalidomide prescriber. And I have read all I can; both the information provided by Celgene (the manufacturer/distributor of Thalidomide) and the information on the Myeloma List. Fortunately, the "bad" insurance I have will cover Thalidomide. Perhaps they're not so bad after all. So that is where I am currently, about to start Thalidomide.
Three months after my original diagnosis, as I was to leave the hospital, I asked the doctor how long he thought I had to live. All he could do was quote the statistics. According to the MM mortality tables (1982), with my "level of burden", I had a 10% chance of living 5 years. As I said, it's been 16 years. Sixteen wonderful years. I have gone from deaths door to taking a jungle trek in Thailand. I hope this gives you something to think about. We are people not statistics. Each one of us is different. Each case of MM is different. We all can hope and hope is an important part of the remission formula.
From his wife:
Allen did try thalidomide and the treatment was not successful. There were no
other treatment options left for him, after fighting MM for nearly seventeen
years. He was hospitalized on August 24th with failing kidneys and died on Sept
14th. He was a real fighter and enjoyed a remarkable quality of life after
diagnosis. At the end, I knew that he felt that life was worth the struggle.
From his daughter:
My name is Ruth Gifford and I am the oldest of Allen's two daughters. I knew this page existed, but have not had the courage to visit it until now, what with all the Father's Day hype going on and this being the first Father's Day without Dad.
What was truly amazing about Dad was the way he adapted, not only to his disease, but to life in general. The best example I can give is to say that (among others) at his memorial service were myself, my ex-husband who remains close to our family, my current wife Dr. Atara Stein, and her daughter Sarah VanWinkle, my step daughter. When I married Atara in June of '97, my father cooked all the food for our wedding brunch and even now, three years later friends and colleagues still smile dreamily when they talk about the food. I know so many gay and lesbians whose parents refuse to even speak with their children and there my dad was, happy as a clam, tearing up my kitchen.
He was an inspiration to both myself and to my wife, who suffers from a steady-state variety of Multiple Sclerosis. She often says that if she can face her illness with half of Dad's strength and, most importantly his humor, she'll know she's doing fine.
As fathers go, Allen made his share of mistakes. As daughters go, I made my share of mistakes too. But I always felt loved and accepted, and I always know that he tried to understand me. In my own religion (which I did not share with Allen) I know that he will return someday, and some other lucky people will get to have him in their life.
Rest with Her, Dad, and come back when you're ready. There's always more projects to be worked on, new recipes to be learned, and new places to visit.
I still love you Daddy.
Ruth Gifford, email@example.com
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