After my myeloma diagnosis in early March 2006, I received induction therapy with thalido­mide ^[1] (Thalomid) and dexa­metha­sone ^[2] (Decadron), which lasted for eight months. At the time, this treat­ment regimen had just been approved for newly diag­nosed myeloma patients. As I’m sure you all know, the regimen is now essentially obsolete, which is a good measure of the recent progress in myeloma treat­ment!

After diagnosis, I took a term of sick leave from my university, and spent virtually my whole time at home. The first six weeks were spent basically rest­ing. I re­member that my project one day was to go from lying in my pajamas on the sofa in the living room to lying dressed on the sofa in the adjoining family room. I just managed it. My wife banned me from going up and down stairs more than once per day, as I got so tired and out of breath. Our boys, then aged 12 and 9, did not appear to notice that anything was amiss – maybe I just seemed lazy!

For an occasional excursion, I would slowly walk down our driveway to the mailbox, which was a big deal, since I had no energy and the muscles in my legs seemed to have dis­ap­peared. I developed a walk rem­i­niscent of Douglas Bader, the British World War II fighter pilot who had lost both legs in a crash and walked by using his torso to throw his artificial legs forward at each step.

I had assumed that a good indicator that my treatment was working would be a reversal in my weight loss. This did not happen right away. In fact, my weight dropped a bit further over the next month or so, which really worried me. However, it did eventually turn around.

The treatment also did a good job of driving down my M-spike, which first became undetectable in Sep­tem­ber 2006. My oncologist said that I had “responsive disease”. At that point, he also said that I might live for another 20 years or so, which was considerably better than my original pessimistic expectation of maybe three years.

On the more negative side, the dex eventually gave me cataracts and reduced my bone density to that of an average 90-year-old man. There are always tradeoffs when dealing with strong drugs.

By early June, I was able to go for short walks around our neighborhood – at first slowly, but finally one day at my usual brisk speed. It felt like flying!

I was able to work on a grant that summer and then teach a course in the autumn before taking another term off to have an autologous stem cell trans­plant in January 2007. The trans­plant put me in complete remission, apart from a mysterious three-month period in the summer of 2007 during which I had a small M-spike. This really concerned me at the time, as I was afraid that the trans­plant “didn’t take.” However, the M-spike dis­­ap­peared at the end of the summer. I did not have to take any myeloma treatment – apart from Zometa ^[3] (zole­dronic acid) to strengthen my bones – until January 2014. This was a far better outcome from the trans­plant than I had expected.

About a year after my trans­plant, we moved to Maryland so that I could start work at NASA on a satellite mission that was due to launch in seven years. I definitely had days when I was afraid that I would not make it that long. However, the mission launched on March 12 of this year, and I am still working on it. I really consider myself lucky that I am able to work at something that is so interesting, and so good for taking my mind off health issues.

So, why have I decided to write this column?

One reason is that I thought it might be good for people to hear from someone who has been fortunate enough to have lived a very close to normal life for over nine years (so far) after a diagnosis of myeloma. I realize that luck plays a key role, of course, when dealing with a disease that has as many variations as multiple myeloma. Nevertheless, I hope that I may perhaps give other patients encouragement by sharing my perspectives and experiences.

Another reason for writing, though, is that it gives me the opportunity to converse with a community of people who understand what living with myeloma is really like.

I have already learned a lot from the current columnists. For example, they make it clear that it’s normal not to “get over” having myeloma. I probably think about myeloma at some point nearly every day, and I was starting to feel a bit guilty about that. The point is, I suppose, how really different it is to have an incurable disease that you know may/will get you someday, compared to having had something, and then being cured of it.

I am hoping that writing a column will allow me to interact even more with the Myeloma Beacon community.