Spring is putting on airs, choosing to arrive fashionably late. Each year our community celebrates its agricultural roots with Blossom Weekend. Normally, pear and apple trees, festooned with an array of white and pink blossoms, attract thousands of visitors. They arrive like bees, pollinating local merchants with disposable income. This year, nary a blossom presented itself. Instead, a cold windblown drizzle greeted the tourists. T. S. Eliot got it right when he said, “April is the cruelest month.”
It was two years ago in April, that I started back to work following a lengthy break to undergo a stem cell transplant for multiple myeloma. Other than periodic checkups, I have not missed a day. This January, I began a regimen of oral chemo with the wonder drug, revlimid. I take a daily maintenance dose of 10mg, three weeks on, one week off.
At the end of the last cycle, I experienced a significant drop in my energy level. For three days in a row, all I wanted to do was nap. At work, I felt as if I were walking uphill in sand. I attribute that slump to a low percentage of red blood cells. Soon, my energy picked up as my body replenished itself during the break.
The drug has slowed the progression of my disease. Dr. M and I would like to see a further drop in the cancerous cells, which hold steady after months of slow growth. Accordingly, we will continue with this treatment into the fall as long as the side effects do not create more problems than the drug solves. The goal is to achieve another sustained remission.
Doubt, hope, physical side effects, remissions that tease us, and relapses that punish us; these are factors that make up the complicated equation of living with this blood cancer. I meditate about these things on my blog and my ruminations help me to work through the stress associated with a life threatening illness. The only thing, however, that truly alleviates the alienation of a cancer diagnosis is interacting with others undergoing the same experience.
Each month I attend a multiple myeloma support group hosted by the Leukemia and Lymphoma Society. The value of these meetings extends well beyond their educational promise. I leave each get together not only wiser but also spiritually refreshed. It never fails that I glean something from the two-hour session that changes the way I think about others and myself. This past week was a general meeting. Rather than listen to a medical expert enlighten us about the disease, the moderators asked each of us to give a brief history of our diagnosis, treatments, and something we had learned along the way.
One gentleman’s moment stood out. He recounted how a counselor encouraged him to participate in art therapy as part of his recovery from a stem cell transplant. This opportunity enabled him to renew his values with a focus on creativity, purpose, wonder, discipline, and courage. Then, he proceeded to introduce us to the Jewish concept of Dayenu.
Dayenu is a song that is part of the Jewish holiday of Passover. The word “Dayenu” means approximately, “it would have been enough for us.” Essentially, the song is about being grateful to God for all of the gifts he gave the Jewish people, such as taking them out of slavery, giving them the Torah and Shabbat, and had God only given one of the gifts, it would have still been enough.
Attending a support group will not cure my cancer. Nevertheless, it does cure me of the dread that occasionally shadows my optimism. Catharsis often accompanies the sharing. We testify to our individual fears. We bear witness to what has been lost. In addition, we rejoice in what renews us. Together, we discover that no matter where we are with respect to the disease, diverse paths to affirming life exist. Sometimes we just need another to point the way.
Good Blood, Bad Blood 
Best of luck to you, John. Find solace and strength where you can and joy, even in rainy days.
My husband is Jewish and we have been celebrating Passover with friends for many years. In fact, we just sang the song Dayenu last Monday.
Today, our family will be dying Easter eggs, then celebrating Easter on Sunday.
Happy Passover and Easter to you!
LikeLike
Hi John,
I haven’t checked your blog for a while, so I am surprised that your disease came back so early and you are doing therapy.
I am on a similar path. Double trasnplant in 2009, I was in CR for a year, although bones never recovered completely, since Jan ’11 I am on Rev at 25mg a day.
THe free chains went down progressively, side-effects are limited, besides being tired, but I think we can live with that…!?!
My bones are a more serious problem.
Side effects of Revlimid usually get less with the passing of time, so let’s be optimistic on this.
All the best and a Happy Easter to you and your familiy
Sergio fm Florence/Italy
LikeLike
Beautiful, John. I am so glad you have this group to help you stay centered and give you the opportunity to feel both sides of the equation – the wonder and the fear.
Wishing you a lovely Spring!
Emily
LikeLike
The fatigue is nasty business. Dave seems to have managed over time better. He gets weekly velcade infusions as well. He does them at the end of his day on Monday and when he gets home, he eats and goes pretty much straight to bed. The rest of the week he seems to have decent energy, though admittedly not what it used to be. But over time he seems to have adjusted fairly well to the regimen. I hope that offers you some hope that it will improve with time on the fatigue.
LikeLike
A friend with severe ms often writes about Jewish teachings (laura- http://orli-shines.blogspot.com/), they are always inspirational. I’m so wishing you well John, being able to keep a healthy mental attitude must be challenging at times… good luck.
LikeLike
John, thank you so much for stopping by my blog and leaving your gentle comment. May you feel contentment as you exhale, may you feel safe as you inhale, may the wholeness of your being relax peacefully as you exhale once again. May you feel strengthened inhaling a life sustaining breath in this moment, exhaling and inhaling–your natural rhythm entwined with the breathing of all beingness. May you continue to experience the gratitude of dayenu your awareness expanding and opening to the loveliness of simply being alive right now.
gentle steps
LikeLike
Blessings Dear John.
LikeLike
John — The replies you are getting are on a par with the inspiration you provide us, your faithful readers. Must be gratifying.
I was at the meeting you cited, as you know. I too get as much or more out of the members’ stories of their journeys as I do from the speakers. (It also lets me dig out a little of my nursing experience and information at times, which makes me feel twinges of relevance.)
I’m in an “up in the air” place with my high dose of Revlimid (25 mg). After only the second cycle, including the 7-day rest period, my neutriphil count was in the dangerously low level (933), and two days later, it was back above 1000 but my white cell count was 2.1. (The percentage of neutrophils had more than doubled, but they were double of a less than half-as-many white count. Go figure.) Either the CBC machine was out of whack or myeloma has a diabolical sense of humor.
Tomorrow my doc will make the decision about what to do. I usually have suggestions for her and she honors them, by and large, but I’m sorta baffled this time. Neupogen? How much how often. Wait until the neutrophils go up more? How much more? And she has to deal with a patient (me) who has a phobia about stem cell transplant. That’s what she gets for keeping me alive for five and a half years.
At any rate, know that your presense and your writing help keep my head level and my lips curled north. Our support group (at least my little “clique” within it) seems to be doing not so well right now so it’s good to attend to your perspective and Buddhistic dispassionate compassion. I hope that phrase rings as a compliment, which I definitely intend.
I also echo another commentator’s commendation of Noah. He is due immense praise — and he has done a huge amount of against-the-odds work. He also must have had (and still has) a wonderful role model in you.
Be well. Stay hopeful. Inspire us as long as you feel up to it and we will try to inspire you back.
David Bennett
LikeLike