The Good and Punctuated Life

No blog posts since December 2015! Wow! I’ll be convicted of blogger’s neglect! So, before a whole year goes by, I am hereby reporting in and telling you that, in a word, I am doing “fine.” And I’ll add: it’s a good life, but there are those punctuations.

My harvested stem cells were returned to me on April 2, 2015, and we were off! The doctor at the Cleveland Clinic tells me that I am still in remission. Wheee!  I am feeling pretty good most days. I am taking a maintenance dose of the chemo drug “Pomalyst” on 21 out of 28 days. (Allow me one more rant about the cost: retail value for 21 pills is now listed as $40,000, nearly $2,000 for every pill. My cost? $47/month.) Even though I am in remission, we know that, very likely, there are still abnormal myeloma cells circulating, trying to find some way around my defenses. Thus, the Pomalyst patrolling my system.

I remember a pro and con session with Dr. Reu when I was trying to decide whether to have the SCT. One of the “cons” he mentioned was that, at my age, I might not want to take a whole year out of my life to go through the SCT and recovery. I’d never heard anyone else say that recovery took a year, but now I know what Dr. Reu meant. I was surely out and about a month or two after the transplant, but as the months have ticked by this year, my strength and stamina have inched steadily upward.

So this summer, when my fisherman grandson said, “Grandpa, I want you to get your boat out, and take me fishing,” I said, “Yep, I might be able to do that….if you help me clean out the boat.”  The boat hadn’t been out of the garage for 4 years!

And when daughter Amanda said, “We’re going to England,” I said, “OK, but we’ve got to stop by Doc Martin’s surgery in Port Isaac.”….. “Doc Martin” being my favorite TV program of late. I decided to worry about walking up those steep streets leading up from the ocean in Port Isaac, later.

So……… good times. Not without fatigue. Not without neuropathy. Not without curtailing back to back events. Not without huffing and puffing when trying to keep up with other hikers in the family. Not without a little “chemo-brain.” But at 69 years old and with an incurable disease, I’m not complaining.

And I’m not really complaining when I mention the punctuations to the good life. I’m just trying to keep us all real. To read some descriptions of multiple myeloma, you would think that breakthroughs in treatment have turned it into just another chronic disease, an inconvenience, a pain in the tush, but no longer a killer. The experience of the myeloma community over the past several months belies that rosy picture. There is a robust community of folks with multiple myeloma who have banded together online to share information, tell of their treatments, produce newsletters and blogs and online radio programs with researchers, and the like.

Within the last month, this same community was shocked to hear of the passing of Liz, a 48 year old mother who had been one of our leaders. She wrote over 400 posts sharing information for others, like her, who had multiple myeloma. She was a skier and hiker and traveler, and she was unwilling to give in to her disease. Then, a few weeks ago, she entered the hospital for treatment of pneumonia, and ….. she was gone. Some would say she died of pneumonia, and she would say you are wrong. She died of multiple myeloma.

This year, key people in the mm community have passed, people well known by the rest of us because we read their monthly articles. Some documented their downward spiral; some slipped away ever so quickly.

Earlier this year, Martha and I had some friends over for lunch. Mark was a newly diagnosed mm patient. We compared notes and shared stories. Later, we bumped into them at the Cleveland Clinic. Not long ago, we attended his calling hours at a local funeral home.

So, yes, my life is pretty good right now. I’m in remission, lots of people are who have benefited from the ever-evolving treatments. But there are no guarantees with this sneaky, cruel disease. Several new drugs became available last fall. They are having good success. But they don’t work for everyone. Relapse is a very common outcome. These outcomes punctuate the good life.

And even the word “cure” is not as outlandish an idea as it once was. Exciting things really are happening. In the meantime, our goal is to live each day to the fullest, support one another as best we can, and pray that God’s love will be our ever present strength.