My Multiple Myeloma Experience

Less than two months ago, I was diagnosed as having multiple myeloma, a cancer of the white blood antibody cells that most medical textbooks state as being incurable, and for which there are very few long term survivors. Having read all the literature, its my intention to live to at least age 100, so I'm out to do everything in my power to survive.

Background

While I've always tried to stay in good shape, about two years ago, decided to start working out, 4 or 5 times a week. Typically I'd put in a half hour on the StairMaster, followed by various weight lifting exercises, depending on the day. Subsequent to one workout, a club member asked me to play some racketball with him in May 1997. Feeling very warmed up, we started play immediately. But towards the end of the first game, I took a large side step to the right, and felt something "pop" in my right hip.

Unable to run after the ball, I concluded the game a few points latter.

Found myself limping for the next two weeks, but after that I felt great. Subsequently, in early August, I was learning to windsurf, in particular I was quickly becoming expert in falling off the board and landing feet first into the soft mud of the San Francisco Bay, near Coyote Point. After a few days of this, found myself limping, and decided to visit Kaiser.

Ironically, an oncologist saw me and prescribed a weeks worth of muscle relaxant. But two weeks latter, my hip still hurt, and at the suggestion of my sister, a nurse practitioner; I asked to see a physical therapist.

In mid-September, I saw a physical therapist for the first time, who determined that my right hip was rotated out of position and was able to manipulate it back into position. He also prescribed various exercises to help strengthen the area. On five subsequent visits, I met with the therapist through the end of November. While much of the pain have been alleviated, a certain amount of limping still remained, particularly when the hip was stressed.

With some trepidation, I accepted an offer from a friend to join him skiing in Montreal for 4 days, just prior to Christmas. Despite my apprehension, had a great time skiing, due in part to the extensive stretching exercises I did prior to skiing each day. But ironically, it was while trying to unload my ski equipment from an elevator at the Montreal airport on Christmas Eve, that I slipped and fell, and found myself, once again, walking with a severe limp.

My experience with the physical therapist not having increased my esteem of their profession, decided to see a chiropractor shortly after my return from Montreal. He did an exam, took an X-ray of my hip, and noted that my entire right hip, leg, knee and ankle were out of alignment. And indeed, he quickly made a considerable reduction in my pain and discomfort over the next two weeks.

The Accident

In mid-January 1998, I went out with a friend for dinner. It had rained earlier in the day, and the sidewalks were still wet. Walking on a metal grate, my right foot slipped forward. Instinctively, I arched my hips forward and swung my arms forward to catch myself. But as I did this, I heard a "snap" and flash of pain from my right hip, and fell flat on my back onto the sidewalk.

I laid on the sidewalk for a few minutes, in hopes that I'd be able to muster the strength to move. But the pain was such that I didn't bother even trying. I was convinced that I'd either dislocated the leg or pulled a tendon. But a few hours latter, at the Kaiser hospital, it was evident that I had a very bad fracture of my leg, the femur was broken about an inch from the hip socket, and the head of the femur that fit into the socket of the pelvis, was very distorted.

But as a young male, in good health, fractures of the femur, one of the largest and strongest of bones in the body, almost never happen. So before any surgery to repair the fracture could occur, it was crucial to determine its cause. Over the next several days, it seemed to me that the hospital zapped or poked at me with almost everything in its possession. In fact, in leaving the hospital, it was 2 weeks before the black and blue marks on my arms from the tape and needles disappeared.

One thing I quickly learned, is that the American medical profession apparently will give out any amount of pain killer to someone who is 65 or older. But they are down right parsimonious when it comes to younger patients they suspect of wanting to get "high" on them. The first two days in the hospital, I had to get the nurse to give me injections of morphine, since the medication on demand dispenser was providing minuscule doses. These days were particularly bad since frequently I was having painful muscle spasms.

One of the better things I did upon entering the hospital, was to have a friend retrieve a list of friends and their phone numbers from my condominium. I scanned down the list, and asked him to call several of them, to let them know what had happened, and where I was staying. This resulted in a steady stream of visitors and phone calls over the next two weeks, which really helped to breakup the day and improve my morale.

You gain a lot of insight into your friends, when you're in the hospital with a major medical problem. Friends who had lots of medical problems in their past, seemed to be the most frequent in coming by, as well as the most understanding and thoughtful in the gifts they brought by. One of the most appreciated gifts was some books on tapes and a tape player with earphones. I spent many evenings, when I otherwise couldn't sleep, listening to them. Another friend astonished me by flying over 2,000 miles to spend a day and half with me over the weekend, before they flew back to their teaching position at Georgia Technology.

When I was diagnosed in the hospital with multiple myeloma, it really didn't mean much to me. Between being on morphine and never having heard of the cancer, I was much more interested in getting my hip replaced. But as I subsequently started to read the literature, I found it difficult to accept the word, "incurable." Being an analytical person, it was very frustrating to be immobile and fatigued, and unable to do any research on my own. I asked two of my friends to track down information for me. One did considerable searches on the Internet, the other was able to identify a well regarded doctor who was expert on multiple myeloma.

Leaving the Hospital

Having lived on my own and been self sufficient since college, it was very difficult to accept at first, that I needed to live with my folks for the next month. But having experienced a rehabilitation hospital for a single day, I cried for joy upon getting into the car for my parent's house.

There is something that sucks at the soul of an indifferent institution catering to the old and infirm, that I found overwhelmingly depressing and sad. The emotional support you receive from staying with family or friends, more than makes up for any small lack in facilities that a more formal institution might offer.

To stabilize my femur from further attacks by multiple myeloma, my physicians scheduled me to receive radiation treatments. Over a four week period and 20 visits, I received 200 Rad doses of 4 MeV X-Rays each day from a Varian Clinac, a workhorse in the arsenal of radiation therapists. While exposure to the leg causes few direct side effects, I found myself increasingly needing sleep as the week wore on, often having to take 30, 60 and 90 minute naps during the day. Some nights I would sleep as long as 11 hours.

Another thing that I'm having to accept, is that I'll be continuing to get stuck with needles for months and years to come. Not only are there frequent blood tests, but each month I'm to receive a two hour infusion of Aredia. I used to turn white and faint when someone tried to take my blood. Now I just try and look the other way, and hope it'll be over with soon!

How I'm Helping Myself

My uncle is a retired psychiatrist who I respect greatly. He took it upon himself to research and identify a therapist who specialized in visualization with respect to multiple myeloma. Shortly after leaving the hospital, I began hour long therapy appointments by telephone to his office in New York. Typically we would spend 40 minutes discussing my state of mind, and what had been going on with me that week; and than 20 minutes doing two visualizations. For me, visualizations are very powerful, and something that I can do almost anytime or place. For others, I'm told, visualizations lack any punch or meaning. Its my feeling that when you're fighting cancer, you do anything and everything in your power that you think can help.

Another friend of mine has been studying Chinese herbal medicine and acupuncture for several years at a school in San Francisco. At my request, she was kind enough to select two herbal tinctures, Echinacea and Astragalus / Ligustrum. Prior to breakfast, lunch and dinner, I take a dropperful of each, diluted by a small amount of water. The astragalus is a dark brown, the echinacea is a smokey yellow, and together, they have a slightly bitter taste. The literature I've read states that both help the immune system by increasing the numbers of various types of T cells.

A long time friend of mine is a 10 year survivor of a malignant brain tumor. She recommended attending a cancer support seminar, held all day, once a week, for 10 weeks. In essence, it provides group therapy to a small group of cancer patients. Held on the grounds of a church, in what was formerly the pastors house, we meet in its living room. With each meeting, we share our emotions with respect to cancer, how it has changed our lives, and how we are changed. My friend said that she didn't like it when she took the course, but latter realized that it had given her an incredibly valuable set of tools to help in her psychological battle with cancer. As for myself, I can't say that I always like the pot of emotions that are being stirred up by the course, but I do feel they are helping me become more emotionally healthy.

Summary

Everyone that I meet comments that I have a upbeat, positive attitude. I do feel confident that I'm going to survive. I also feel that a positive, confident attitude helps the immune system, and furthermore, life is too short to sit around and mope. Once each day is gone, we bid it adieu forever, and we can only greet the next day with renewed conviction to enjoy and live it with all our joy and life.