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Myeloma Rocket Scientist: Diagnosis Memories

By: Trevor Williams; Published: October 8, 2015 @ 4:21 pm | Comments Disabled

Two subjects that I seem to spend a lot of time think­ing about these days are multiple myeloma and rocket science. This is not all that surprising really, as I was a university professor of aero­space en­gi­neer­ing, teach­ing subjects that could loosely be termed “rocket science,” when I was diag­nosed with myeloma in 2006.

It was in the late spring of 2005 that I experienced what was probably, in retro­spect, the first sign that something was wrong with my health: an annoying dry cough that was not a big deal, but just would not go away. At first, I thought it might be an allergy, and so would disappear when we went to England for a family visit. It didn’t. (A cough isn’t really a classic sign of multiple myeloma, but I have seen it men­tioned in one or two patients’ accounts of their diagnosis. It also seems suggestive that the cough disappeared as soon as my treatment started work­ing.)

During that autumn, I realized that I was losing a bit of weight. It was only about five pounds when I first noticed it. However, my weight is usually very stable, just creeping up gradually over the years, so this was unusual enough to concern me.

Then, from Christmas onwards, I started sweating so much at night that I kept having to get up to at some point to change. I was becoming more and more run-down (partly due to anemia), continuing to lose weight (eventually about 20 pounds), and running a low-grade fever most of the time.

At the university, I would teach a class, go back to my office and sleep, and then go teach the next class. I remember that a student in one class had a laptop that he sometimes had plugged in at the wall. After a while, stepping over the power cord a few inches off the floor to get to the front of the classroom began to feel like running an obstacle course.

I finally realized in late January 2006 that I really had to see a doctor. Unfortunately, I didn’t actually have one. This was partly because I had been, up until then, “healthy,” and partly because I was somewhat afraid of doctors. Since I suspected that I would never do it myself, I asked my wife to find a doctor and make me an appointment for a check-up.

This doctor sent me for a chest X-ray to check for tuberculosis. He didn’t think it was likely, but a cough accompanied by weight loss indicated it. I also had some blood taken for tests.

The doctor did a good job. When we met a week or so later to discuss the results, he said “I don’t want to freak you out, but I would like you to see an oncologist.” He then talked about my having an “M-spike” and his suspicion that I might have “multiple myeloma.” I had never heard either of these terms before.

When I met with the hematologist/oncologist, he at first seemed a bit reluctant to accept a general prac­ti­tioner’s opinion that I might have myeloma. He therefore sent me off for various tests for other possible ill­nesses. We would meet every Friday, discuss the (negative) results of that week’s tests, then schedule dif­fer­ent tests for the following week.

One of the tests was for lymphoma, which was something that freaked me out, as this was what my mother had died of. The test came back negative though.

Finally, after three weeks that seemed a lot longer, as I was getting significantly worse by the week, the oncologist took a bone marrow biopsy. I was at home when he phoned the following Wednesday, March 8, 2006, to give the diagnosis.

He said that the biopsy had shown 47 percent myeloma cells, and that I was “really sick” and should start treatment as soon as possible. (We met two days later to plan my induction therapy, which I will describe in the next column.) I tried to make myself some coffee after this phone call, but my hands were shaking so much that I just scattered granules all over the counter.

There was a small element of relief in finally having a diagnosis, as at least we now knew what I had, and so presumably what to do about it.

On the other hand, my memory of the first time that I read the famous myeloma phrase “incurable but treat­able” online is that it was written in large, bold text that stood out from the rest of the page, a bit like in a movie. Obviously it really wasn’t, but that is how its impact made it stick in my mind.

My expectation soon after diagnosis, based on all that I read online, was that I would probably live for another three years. That was the survival number that you always saw quoted then. I also expected to feel crummy for most of those three years, as that’s how I was feeling then.

It was a really abrupt readjustment for someone just over 50 who had never really had any medical issues, and who had consequently always assumed that they had a long and healthy life ahead of them.

Trevor Williams is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His column will be published once a month.

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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