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Myeloma Dispatches: Unexpected Gifts
By: Maureen Nuckols; Published: October 31, 2016 @ 12:19 pm | Comments Disabled
This year, the autumn colors have been unusually magnificent here in Colorado. I believe this Indian summer has been the finest show in recent years.
The riot of colors on the hillsides created a contrast to what was happening to my body. Multiple myeloma cells were advancing aggressively and reducing the production of normal blood cells. I became acutely ill with severe anemia, easy bleeding, and shortness of breath.
My husband Mark and I had planned a three-week trip to the East Coast for the end of September to revisit the life we lived in the 1970’s: Cape Cod, Maine, Boston, and Connecticut. However, I was too sick, to travel and we had to cancel the trip. We were not sure what was next for us.
I did not accept this decision with grace and good humor. I was angry and disappointed.
When my doctor recommended a brand new treatment protocol to me in mid September, all I remember was that I would be tied to the cancer center for weekly infusions for the next 10 weeks. The newest treatment consists of weekly Darzalex [1] (daratumumab) infusions, twice weekly Velcade [2] (bortezomib) injections, and oral dexamethasone [3] (Decadron). We were hopeful.
My journey through this new protocol means twice weekly visits to the cancer center: one long visit on Mondays for the Darzalex infusion plus the first Velcade injection, and another short visit on Thursdays for the second Velcade injection.
Every few days in between the visits to the cancer center, my husband chauffeured me to parts of the back country. We became leaf tourists of Colorado fall colors. The dappled black and white of the aspen bark crowded together with bunches of its gold coin-like leaves. Small breezes created a shimmering of the aspens. We walked in the woods – sometimes just for a few minutes because of my weakness and shortness of breath.
We explored the top of mountain passes by car. We joined lines of car from the cities looking for the best view. In the high country, you can see far to the mountain sides. The golden patches of aspen create a temporary, dramatic contrast within the sea of dark green spruce trees.
With each stop with a colorful view, I opened my senses and practiced the abdominal breathing learned from years of fighting this cancer. Breathing slowly and deeply. Breathing in the beauty, breathing out fear and resentment. Right then and there, I received my first unexpected gift: this simple exercise was comforting. I opened my eyes and was able to push away my fears.
Another day, we journeyed to lower hillsides and walked to the top of a small ridge. Scrub oak with fire red leaves lined the path to the small ridge. Last year a stranger had placed two chairs under a juniper tree. Those chairs were another unexpected gift for me. As I sat, I noticed that even the ground cover of shrubs and grasses had turned orange, scarlet, and a russet brown. From my chair, the hillsides appeared to be a crazy quilt of rich earth colors.
I breathed slowly and deeply. I breathed in the gift of autumn and breathed out fear and worry of the future.
In my own backyard, I have poplars, maples, and elms. The trees are dense with leaves and their closeness creates a sense of being in a low tree house.
Whenever I sit outside, I lift my face up to the sun and feel the comfort of the warmth. I breathe in the gift of a sunny, blue sky day and breathe out disappointment and sadness.
The gift of the autumn colors kept both my husband and me going through the first weeks of uncertainty associated with the new treatment.
As the weeks passed, I noticed my bruises were fading. I was still weak, but definitely less short of breath. I felt better even with the expected side effects of the drugs.
The best unexpected gift came in mid October in form of a phone call at supper time. My familiar oncologist nurse could not wait to tell me the news.
After only four rounds of Darzalex, Velcade, and dexamethasone, my IgA dropped to 4 times the normal level, down significantly from the 11 times normal it had been around Labor Day. My M-spike was now at 1.5 g/dL (it was at 5 g/dL around Labor Day).
I was stunned. The results were quicker than anyone had predicted. We had been told that six Darzalex infusions would be required before results could be seen.
The news kept getting better.
After five rounds, I had normal hemoglobin levels for the first time since May. My white blood cell count was still low, partly due to the Velcade. The platelets were also still low, yet they had been increasing each week. I have not needed a blood transfusion or platelets for almost three weeks.
The cancer team is thrilled. I am their first patient on this protocol. This is the best unexpected gift: significant positive results in a short time.
How do I feel? I am cautiously hopeful because this is my 7th line of treatment, and I have been here before. Right now, though, I focus on the positive and hope.
The unexpected gifts of a brilliant autumn carried me through the dark days.
I am in a new place now; out of the dark place, back into the sunshine. I am out of crisis.
Maureen Nuckols is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here [4].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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URLs in this post:
[1] Darzalex: https://myelomabeacon.org/tag/darzalex/
[2] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/
[3] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/
[4] here: https://myelomabeacon.org/author/maureen-nuckols/
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