From time to time, I will run into an acquaintance who is vaguely familiar with my situation but not really aware of all the details.  They will often ask, “Are you back to work these days?”

I usually will respond with something like. “I’m busy enough just taking care of my health.”  This is true, but an oversimplification.

The unfortunate reality is that I have become a full-time multiple myeloma patient.

It wasn’t supposed to be this way. I never felt like that was part of the original plan.

When I was first diagnosed with multiple myeloma, I was willing to endure whatever was needed to be done so that I could put this disease behind me.

As an Ear, Nose, and Throat doctor, my frame of reference for cancer was treating tumors of the head and neck.  The treat­ment intent was almost always for cure.  With most cancers of the head and neck, the treat­ments can be brutal, but once it is over, it is over.  The longer the patient stays in remission after treatment, the better the chance of a cure.  After five years, the patient is officially considered cured.

This is not the case with multiple myeloma.

Even though myeloma treatments have improved greatly, very few patients are actually cured, and even long periods of remission provide no comfort against relapse.

Multiple myeloma is officially considered treatable but not curable.

Across the spectrum of multiple myeloma, “treatable” can mean many different things.  For some people, this can mean years of minimal or no treatment.  Others have more aggressive disease requiring more aggressive, almost continuous treatment.

In my own case, I continued to work for three years after induction treatment and autologous stem cell transplantation (a transplant using my own stem cells) until side effects made this no longer possible.

Since then, it has been a roller coaster ride of almost nonstop treatment.  In the last three years or so, I have had a second autologous stem cell transplant, multiple rounds of novel myeloma therapies, traditional chemotherapy, a donor (allogeneic) stem cell transplant in August, and radiation therapy last month.

I had hoped all of that would give me some period of relief and somewhat of a break from nonstop treatment.  This has not turned out to be the case.  I have relapsed again with several areas of activity showing up on a recent PET scan.

So, the plan is two to three cycles of systemic treatment.  We are going to try Kyprolis ^[1] (carfilzomib), cyclo­phos­phamide ^[2] (Cytoxan), thalidomide ^[3] (Thalomid), and dexamethasone ^[4] (Decadron).  Essentially, it is the “CYCLONE ^[5]” regimen described by the Mayo Clinic and well reported on by The Myeloma Beacon.  These are all drugs I have been on before but never in this combination.

Systemic treatment will hopefully be followed by a donor lymphocyte infusion (an infusion of white blood cells from my stem cell donor).

I am fortunate to have Moffitt Cancer Center here in town, so travel is not a big issue.  But this still means trips at least twice a week to the hospital for infusions, more side effects, and more tests.

My occupation has become multiple myeloma patient.  When I am not being treated, I am thinking and worrying about the disease.  I am researching anything I can find about it.  I am talking to experts about it whenever possible.

Don’t get me wrong, I live my life as much as possible.  I try not to make multiple myeloma all consuming, but it is not always easy.

I am able to exercise some, spend time with my family, and go out with friends.

But as my wife has noted, it seems that whenever we try to make plans they get sided lined by some new unexpected twist on the myeloma road.  Treatment and concerns about infection have made travel very difficult.  On several occasions, I have sat down to plot my next career move only to be derailed by the next myeloma treatment.

So for now, I just have to wrap my mind around this next round of treatment, try to make the best of it, and not let it get the better of me.

As with any occupation, I try to bring all my energy, thoughts, and resources to bear.  I like to think I remain clear eyed and realistic knowing that at this point the trajectory of my disease is not good.  But at least for the time being, I feel that I still have a few options left in front of me.