For three years after my myeloma diagnosis and initial treatment in 2006, I continued to work a fairly full schedule as an ear, nose, and throat surgeon, seeing patients three days a week and doing surgery two days.  However, by design, my days were not nearly as full as before I had gotten sick. 

As I mentioned in my last post, after relapsing on Revlimid ^[1] (lenalidomide) / dexamethasone ^[2] (Decadron) two years ago, I started treatment with Velcade ^[3] (bortezomib) twice a week. Since the Moffitt Cancer Center was right across the street from my office, I was able to finish my day at work and go over for a treatment with minimal disruption.

The response to Velcade was great but the side effects were not.  I was losing weight, was incredibly fatigued, and the neuropathy in both my hands and feet was becoming a problem, especially because I was a surgeon.  Working was becoming more and more difficult.

I had known from the time I was diagnosed that there would come a time that I would have to make a decision about continuing to work.  It seemed that I had reached that point. This may be one of the most difficult decisions for any person to make, and it is made even more difficult by the unique uncertainties that multiple myeloma presents.

I knew that once Velcade was stopped, some of the side effects would start to subside.  But there were other factors to consider.  How much of an effect did both the physical and mental stress of working a demanding job have on my health?  Even if the Velcade side effects did settle down, how long would my good response last before I needed more aggressive treatment again (six months? a year? five years?), putting me back in the same situation I was currently in or worse?  Perhaps most importantly, how best to spend the time I had before that happened?  Isn’t it more important to try to reduce stress, enjoy more time with my family, maybe even travel, health permitting? 

All these things were running through my mind as I weighed the decision.  I had spent my whole adult life studying and training to do what I did.  I was at the height of my career and had finally gotten pretty good at it.  

For many people, a large part of their identity is wrapped up in their work.  When they stop working, that identity is gone and they feel lost and adrift.  I know everyone is very different when it comes to this. People asked me “What are you going to do?”  “Aren’t you afraid you are going to miss it?”  And, of course, the popular “Won’t you drive your wife crazy being home?” 

Those things did not really concern me.  I felt I had prepared myself fairly well.   There seems to be an emphasis in our culture on always “doing” something and being busy.  I was OK with the idea of just “being“ for a while, taking care of my health and wellbeing.  

I had been living with multiple myeloma for three years at that time.  I think the decision would have been more difficult if I had had to make it when I was first diagnosed.  I did not see myself as only my job.  I did have lots of hobbies and outside interests.   However, one of the cruel ironies of the multiple myeloma was that while I might have more time to do some of the things I enjoy if I stopped working, the disease would make it more difficult to do them. 

There are other very practical considerations when stopping work.  First and foremost, there are, of course, financial considerations.  Do you have a disability policy, individually or through work?  Are you eligible?  Do you qualify for Social Security disability?  Do you have some other means of income?  A spouse who works? It’s not stress reduction if you have to worry all the time about finances. 

The second huge consideration when you stop working is what happens to your health insurance.  This is a whole subject in itself.  Once you have any chronic disease, multiple myeloma included, you have a pre-exisisting condition that makes it impossible to get individual coverage, and any lapse in coverage may result in not being insurable.  Until the health care mess in this country is sorted out, this will remain a problem, and a misstep in this area can be devastating.  This must be thought through carefully.

There is no right and wrong answer for everyone.  All in all, the decision to stop working when I did was the right one for me.  It has given me quality time with my family.  It is given me the ability to deal with multiple relapses of my multiple myeloma and with the side effects of the medications without having to worry about a stressful job and schedule to keep.  It has given me the opportunity to explore other avenues and time to just “be.”