Several years ago, well before I had been diagnosed with multiple myeloma, we had a family friend who was diagnosed with an aggressive brain cancer.  He was one of these relentlessly upbeat, positive people, and of course, he approached his disease in the same way.

Despite the prognosis and all appearances to the contrary, he refused to accept any outcome except that he was going to “beat this thing.”   Now I cannot speak to what he was secretly thinking or what he felt in his heart of hearts, but that was the public persona.

He seemed to genuinely feel that by the sheer force of his will, positive attitude, and good medical care that he was going to come out on top.

At that time, I was active in medical practice and the idea of having cancer myself was inconceivable.  I was a clinician and using cool, objective judgment.  I remember thinking, ”He’s not being realistic.  God bless him, and I hope he does well. However, my scientific brain tells me that no matter how positive and upbeat you are, the biology of this disease is going to win out.”

Within a few months, he had passed away.

A few years later, I was diagnosed with multiple myeloma.

The memory of our family friend stuck with me.  I remember discussing it with my wife and saying, “We will do everything we can, any way we can. At the same time, I always want to be realistic.  I didn’t want to be like our friend, somehow deluding myself into thinking I can overcome anything and that it will all work out.”

I resolved to always try to keep it real.   The analytical side of my brain knows it doesn’t always work out.

I am finding myself once again deep in the weeds with my disease.  After a few months of feeling like things were going really well, I noticed a lump on my chest wall.  A PET scan showed several areas of extramedullary disease.

So, despite a donor (allogeneic) stem cell transplant, donor lymphocyte infusions, and a regimen of Kyprolis ^[1] (carfilzomib) plus Revlimid ^[2] (lenalidomide), my disease has again relapsed.

A short initial round of Kyprolis, Pomalyst ^[3] (pomalidomide, Imnovid), and dexamethasone ^[4] (Decadron) does not seem to be working either, so we are now adding cyclophosphamide ^[5] (Cytoxan) to the regimen.

I understand that this is bad.  I read all the papers, and I know the statistics.  I see the look in the eyes of my myeloma doc, which says without him even speaking that he doesn’t even know how bad this is.

I understand only too well. Things have been bad before.

Somehow, we have always managed to find a way.  However, I may be running out of bullets, luck, and time.

I have given up on trying to explain it to friends.  The response is always the same, “You’ve been in bad spots before, and you’re tough. You’ll be fine.”

“Well, no, you don’t understand.”  Never mind.  “I’m doing fine,” I tell them.  I know one of these times, maybe even this one, I probably won’t be fine.

In response to one of my recent columns, a reader who was also in a very bad spot talked about it being an exercise of surrender and letting go of fear.  I agree there is a certain amount of resignation and acquiescence that has to take place.

One of the interesting things about multiple myeloma as a cancer is that it tends to run a fairly long course, so there is a long time to think about and adjust to these things.

If people ask me about dying, I’ve had a long time to think about it.  The idea certainly doesn’t come as a surprise or frighten me.  Although, I have to admit I’m not too excited about the prospect of a slow painful decline.

At this point, there is almost nothing about the disease that seems to come as a surprise to me.  I have come to anticipate and expect the bad news. I hope for the best but expect the worst.

Having said all that, I want to be perfectly clear on one thing.  This is not the same as giving up or throwing in the towel!

At least at this point, I am doing none of that.  I have not given up on hope.  I still feel pretty strong and energetic.  I am still going to try to do everything I can.  I am still willing to put up with an awful lot of abuse if I need to.  At some point, I may say enough, but I don’t feel I’m there yet.

However, I do think that it is important to move forward trying to be as realistic as possible.  Keeping it real.