How are you?

Ah, one of the simplest questions in the world.  A common part of civilized speech, asked dozens of times a day.  It’s thrown around everywhere.

A quick reply of “Fine, and you?” and move on with your world.

As a cancer patient, I have become increasingly perplexed with this question and how best to answer it.  I am certain that we all face the same dilemma.

It is, of course, a loaded question, and the real answer is not simple.  It can be handled many ways.

Before formulating my response, the first thing I have to figure out is who is asking, what is the setting, and do they even care about the answer.

Every morning when I wake up, my wife asks me how I am doing.  It’s her way of gauging the ups and downs of my disease and treatments and to hopefully head off problems. She understands the implications of my treatments and where I am with my disease.  She cares about the answer.

As the circle becomes wider, moving from close friends to friends to casual acquaintances, answering the question becomes much more difficult.  Certainly, a few close friends care and generally want to hear the answer.  Even then, an honest explanation of where I am at is often met with glazed eyes or a far away look.

The answer is complicated; no one wants to hear complicated.  And definitely no one wants to hear bad news.

The reality is, although people may care to an extent, most everyone’s plate is pretty full with their own issues.   Outside of family, no one really has much room for someone else’s woes.

That's okay; I understand that.  I’m no different.  I know that, in one way or another, everyone has something going on. While I am interested in how other myeloma patients are doing, I honestly can’t profess too much interest in my non-cancer friends’ sore shoulder from too much tennis or plantar fasciitis from running too hard.

Most people have already moved on after the question is asked, anyway.  Anything more than “I’m fine,” and you have lost their attention.

In a recent conversation with a friend, he asked how I was doing and my reply was “Pretty good.”  Knowing I had had a recent scan, he persisted, wanting to know the results.  “Well, actually, it was not so good,” I said.  “That’s good,” he said; he’d lost focus somewhere between asking and the answer.

The other thing to consider is most people are uncomfortable because they really do not know how to respond.   Is it even worth putting them on the spot to respond?  “Gee, I’m sorry,” “You’re tough,” “Hang in there,” “Let me know if there is anything I can do,” are all responses we’ve heard over and over.  My all time favorite is, “You’ll be fine.”  Really?  Says who?  Are they really saying that they’ll be fine?

Many patients take the approach of not disclosing anything, preferring to keep completely private with their disease.  This may be for personal reasons, preferring not to burden other people, or maybe for work or professional reasons.

C.W. Bill Young was a very prominent, long-standing U.S. congressman from my area.  He passed away recently, fairly suddenly, while still in office.  It turns out, he died from complications related to his multiple myeloma.  The thing was, no one knew he had multiple myeloma.  I’m just speculating, but apparently his answer was always, “I’m fine,” as opposed to something like, “These myeloma drugs are really kicking my behind.”

I try to take somewhat of a middle ground approach, again keeping in mind the person and the situation.  A quick “Doing fine,” “Feeling pretty good,” or “Still here,” is all that is needed in most situations and really all most people want.  Of course, there are a few close friends who want and deserve to know the full story.  Even then, I have to gauge how much is too much.

The real answer is, as I said, complicated. Sometimes I don’t even know the whole answer.

The good news is that despite a pretty rigorous regimen combining Kyprolis ^[1] (carfilzomib), Pomalyst ^[2] (pomalidomide, Imnovid), cyclophosphamide ^[3] (Cytoxan), and dexamethasone ^[4] (Decadron) for my extramedullary disease, I am feeling pretty good, with minimal side effects and good energy.

Since my disease in now nonsecretory, my M-spike and even light chains are of little value in following the disease.  I am forced to rely on PET scans to monitor my response to treatment.  In between scans, it is difficult to know how things are going.

The bad news is that my disease has progressed in spite of my rigorous drug regimen.

I am now exploring my next option.  Because of my situation, I am not really a candidate for any clinical trials.  With the help of my doctors, we are looking into getting access to new drugs through compassionate use from the drug companies.  We are also exploring genomics options; a tissue sample is being screened to see if my myeloma cells have any identifiable genetic mutations.  Hopefully, I will have more to report on this later.

Has everyone zoned out yet?