“Whatever is happening is the path to enlightenment.”
Pema Chodron
I am a fifteen year veteran of Multiple Myeloma, a blood cancer of plasma cells. The majority of MMers have a life expectancy of around five years at the time of diagnosis. Approximately 20% of patients with this disease persist longer. I’m on the lucky side of that ledger.
MM is a chronic, incurable disease. Left untreated, it gets worse. Furthermore, it finds ways to work around treatments. When that happens, the patient moves on to other drug combos. Oncologists have options. Their medicine cabinets are well stocked.
Through the years, I responded to most treatments. I have a strong constitution. I go with the flow of side effects. My emotional DNA dovetails with the restraints placed on social activities. I avoid crowds. I like to be on my own.
I’ve had access to the highest standards of care. That, plus adherence to safe behaviors, allowed my disease to plateau. I’ve enjoyed a decent quality of life.
Lab numbers continue to suggest I’m floating in a sea of tranquility. But, it’s not all smooth sailing. Neuropathy, fatigue, and breathing problems cling to me like barnacles. The accumulation of toxic drugs conspire with my dysfunctional immune system. This old boat is taking on water and it seems I’m bailing with a teaspoon.
In December, my oncologist suggested we re-stage the disease. The implication was that we should try to do better. Several diagnostic exams confirmed what I felt: an entrenched morbidity more and more resistant to treatment.
There were 2nd opinions, 3rd and 4th opinions. Pragmatic doctors conferred. They proposed a new regimen. But, four arduous cycles later, we scuttled the program. It caused more problems than it solved.
Given my longevity with MM, I’ve nearly emptied the medicine cabinet of remedies. What remains are variations on past themes. Their durability is suspect and they come with consequences. It’s time to consider what’s outside of the box.
I have stopped all treatment. We drew blood to establish a new baseline. We will draw more blood and reassess. We might opt for a clinical trial. We might pursue Car-T therapy. Ultimately, the choice will be mine. For the time being, though, we wait.
Staying well requires patience. There’s doubt. There’s guesswork. You respond, you relapse. Such is life at the University of Cancer.
While we try to figure things out, I balance the course work with relaxed activities. I nurture our petite garden. I amuse myself writing songs. Shore birds entertain me at the waterfront. I enjoy the antics of grandchildren.
Anxiety? Occasionally. Today, however, I am at peace and optimistic about the future.
For more information, click on The Drill.
Now, a song, Time Floats Like A Feather.
Good Blood, Bad Blood 
It’s always good to see an update on you, John! I miss visiting with you and hearing your stories!
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Hi Erin.
I hope your family is well. We have a lot of catching up to do!
The pandemic changed many things in the way health services are delivered. Your absence and the nurturing massage you provided are still sorely missed.
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Delightful song, John. You radiate such peace. Spanky seems to agree. 😎 Take care, my friend. You are in my thoughts.
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Hi Julie. Thanks for the comment. Spanky has impeccable timing! 🐈
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Thanks for sharing your journey with this, John.
A rocky road indeed, but those of us who love and follow you are grateful for the candor. And well aware of the courage and grace it takes to do it over these many years.
We are rooting for you, dear friend. Keep those new songs coming!
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Hi Arl. Thanks for commenting. Candor is a slippery slope. It’s a good challenge for writers.
I really miss our summer adventures with you and Kevin. We just experienced two family reunions. One in Sunriver and the other here in The Hood.
As I attempt to participate in Car-T, the SCCA might be in our future. 🤞
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It would be wonderful to have you close for a while. Keep us posted!
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Your writing is so beautiful ~ I’m amazed at how you approach MM and how it does affect you but you still flow making such a wonderful life. I tell you, your written line: “This old boat is taking on water. I’m bailing with a teaspoon of hope.” had me both choked up while filled with hope and admiration as this is how we should all be every day. And if there is a perfect photo to demonstrate what life is about it is of your grandson, perfect 🙂 And with the second best line: “Sam, my grandson. We both excel at recess.” You should also add ukelele, well done ~ great song and the title fits the mood of the Columbia Gorge.
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Hi Dale. Thank you for commenting. Your words make my day. We are both fortunate to experience life here in the Northwest. It inspires my writing and the beauty of your photography.
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John,
So tough about your cancer complications.
So glad you have an incredible strength and wisdom. I admire your candor to second Dale’s comment.
I love how your writing and music help you cope. Reading your words and hearing your songs make me feel better about the world. Even with the known craziness and the expected uncertainties, connecting with those we care about gives me moments of joy.
P.S. Your grandkids are adorable! Our middle son’s wife is pregnant and Gary and I are beyond excited about being grandparents.
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Thanks for commenting Ginger. Yes, things are a little complicated. OTOH, I feel good being drug free. We’ll see how long it lasts.
That’s terrific news about your son’s family! I assume they live nearby and that you and Gary will be active as grandparents.
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