I have had the honor of visiting with several cancer survivor and patient groups (mostly multiple myeloma-focused groups) since my treatment for myeloma began in December of 2008. Though the groups have been created for rather sobering reasons, I have found them to be warm and inviting and sources of valuable information.

While I am always happy to recount my own ongoing myeloma experiences, one of my very favorite aspects of these get-togethers is to hear the vastly unique stories that come from the group’s members. Their personal insights have provided me with many useful, real-life ways in which to better deal with my own cancer.

Since openly talking about topics so close to the heart can be a bit intimidating for some folks, we often try a very simple, but still meaningful, exercise.

I’m a big fan of simple. Alluding to me, my wife is known to have said, “From simple minds spring simple ideas.” I appreciate her support immensely!

The patients and caregivers in attendance are asked to quickly jot down one word that flies into their brain that describes some facet of their personal myeloma journey. The range of ‘words’ shared is often powerful, sometimes curious, but almost always quite revealing.

For example, several weeks ago, I stood in front of a group to share what words people had written.  I unfolded a piece of paper, read what was on it, and then said aloud: ‘Fear.’

An empathetic look registered on the faces of the fifteen people with whom I was sitting in a circle at a suburban community center. We let the word sink-in for just a moment and then launched into a discussion about how fear has factored into our struggles with myeloma. Almost everyone had something to say about fear.

I took another piece of paper prepared by a member of the group, unfolded it, and it read: 'Pain.’

Mention ‘pain’ or ‘chemo’ or ‘blood’ or ‘dex’ or a number of other key words, and you get the knowing looks from the myeloma crowd because we have so much common ground in those areas. But it is when the perspectives, thoughts, and opinions of the entire brain trust are thrown on the table that new ways of thinking and insights come to light.

It is not news to any of us that dealing with a diagnosis of multiple myeloma can be a complicated affair. Different schools of thought espouse various treatment options. Patients find themselves pulled one way or another as they try to decide how best to proceed. Do I treat myeloma aggressively, or do I take a more conservative approach? Who do I listen to? Should I get a stem cell transplant? If so, when? How many?

It was this kind of mind-churning experience that prompted one person in the circle to write: ‘Confusing.’

And from the word ‘confusing’ came a frank and energetic discussion about the puzzling nature of myeloma and its treatment.

Though many of the words written down involved the nuts-and-bolts methods or tools of myeloma treatment, I quickly realized that even deeper, more personal feelings were weighing heavily on the minds of the patients and caregivers.

‘Forever’ led to a discussion of the thought that multiple myeloma would be with us, in some form or fashion, until the end of our days. Some patients said that even when they feel good, an overwhelming sense of dread follows them like a black cloud just waiting to unleash a tempest.

One very cute and spry older women said, “I used to feel that way until my sister told me to raise a pretend umbrella and tell that black cloud to go away! I know that it’s silly, but it helps me! Plus, when you bring your umbrella, it never rains, does it?”

That was her charming way of saying that myeloma would not cloud her days. Will pretend umbrellas be offered in a protocol? No, of course not, but I was grateful to hear her thoughts on how she copes with her myeloma.

In one group, someone had written ‘Incurable’ and someone else had scribed ‘Curable.’ Don’t you know that the horse race was off and running for that one!

One person wrote ‘Broke,’ but I didn’t know if he had meant broke in relation to broken bones, or whether he referred to being broke because of the costs of treatment. In this case, discussion revealed that it was the latter. Here is a man with myeloma and the first thing that pops into his head is to think about his family’s financial situation brought about because of his cancer. He had never mentioned his need or his internal guilt to the group, but when they heard the explanation about the word ‘broke,’ they offered several fruitful ideas to help ease his burden.

I can’t share all of the singular words that people have written in the scope of this column, but I will leave you with this one: ‘Dodie.’

Dodie? It turned out that Dodie was the nickname of the grandmother of a fifty-six year-old myeloma patient. Dodie had passed away years before and was still much loved and missed by her granddaughter. In their playing dollhouse and other things that little girls and their grandmas play, Dodie had often said that someday the little girl would get to be a grandma just like Dodie.  With her oldest daughter recently married, the patient prayed that myeloma would not take away the opportunity to be a grandma – just like Dodie.

If you are a patient or caregiver and want to meet a group of folks who may well understand what you’re going through better than anyone else possibly could, see if there is a multiple myeloma support group somewhere near you. It may just change your life!