Buying Time

“Be happy for this moment. This moment is your life.”

Omar Khayyam

White Breasted Nuthatch
White Breasted Nuthatch

Morning: I wash dishes. In front of me, through a window opening to the east, I watch a nuthatch spiral up the trunk of our lilac bush. Rays of sunlight pierce the trembling leaves, and the bird’s eyes wink like sequins.

Later, I’d plant flowers: snapdragons and cosmos out back and new perennials in the front yard. I pulled weary, overgrown plants from year’s past, then replaced them with tomatoes and clumps of fescue. Finally, I weeded the ubiquitous dandelions from the lawn. I plunged my knife deep into the earth, in search of their elusive roots.

This gardening seemed impossible six weeks ago. At that time, I struggled to cleanse my lungs of recurring upper respiratory infections. Chemotherapy for my cancer, multiple myeloma, weakened an already compromised immune system. Each week, there was the roller coaster ride of steroids to manage. Treatment proved effective against the disease. But my overall health and spirit suffered. So, I stopped taking the medicine.

Hiking at Rowena Crest in the Columbia River Gorge.
Hiking at Rowena Crest in the Columbia River Gorge.

Monthly labs provide evidence of the imbalance in my blood counts. I tire easily and my immune system under performs. A clot of malignant myeloma takes up space in my bone marrow normally reserved for productive cells.

For the last seven years, a continuous stream of pharmaceuticals kept the disease stable. But the drugs cause as many problems as the cancer they suppress. Yes, the myeloma will advance without treating it. Stability, however, comes with a unique set of questions.

Instinctively, cancer patients glue themselves to the desire for survival. We hop onto the merry-go-round of hope. Mortal fears lead to passivity and resignation is necessary in order to endure the discomforts. Why else would I tolerate chemo regimens that render me miserable?

These drugs, though, are not intended to make me feel better. They are serial killers set loose to create havoc in the disease environment. Over time, the carnage bled into the recesses of my psyche.

Crossing a bridge, now that I've come to it.
Crossing a bridge, now that I’ve come to it.

This past winter, I worried, “Is it worth it? What is the true value of the time I am buying? Do I really want to keep alive this version of myself?”

Well … yes. I’ve learned that a drug holiday treats both body and soul. It has risks. Yet, now that the veil of chemotherapy has lifted, I have a renewed clarity of thought. I can garden again. Local hiking trails beckon. I sleep better. By choosing to stop, I found strength and peace.

The pragmatist in me knows that more chemo awaits. From within my survivor’s purgatory of wishful thinking, I imagine a balanced treatment that suppresses the cancer without unduly transforming my lifestyle. It’s an idea that contributes to my objective fascination with the disease for, unlike many cancers, multiple myeloma lends itself to the possibility of long term management.

Dr. B and I have a plan in place. We are trying to solve the puzzle. Later this month, if I meet all the criteria, we will initiate a new program. Until then, I’ll try to enjoy the simple, unfiltered treasure of each moment.



9 thoughts on “Buying Time

  1. Delicious to read. You are asking yourself all the big questions and good for you. So glad for the gifts your drug holiday has given you. Looking forward to seeing you in a few weeks.

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  2. It’s a struggle.I understand that there is some hope in the clinical world that we can turn cancer into a manageable chronic disease.I would hate to see this as capitulation since survivors have different hopes. But I think you’ve given over to the details of life itself – and that’s where we experience time. Not waiting, but observing. And there’s so much to see! I do wish you as successful a treatment plan as possible with easy recoveries in between. Your words and observations are admired and looked forward to!

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  3. Hey John … saw Mar and Savie in Rosuers not too long ago. Ike was going to help me with a door at the orchard house and brought her with him earlier this month. I had dug out a handmade raggedy ann so gave it to her. No little girls in my house! ;0) I wish Kenny were here to lend his support for the path you are having to take with your cancer. Wish there was more I could do or anyone for that matter. I am down in Brookings more and more with mom & dad and their health issues. How the world turns for us all. I think about you and Mar often…still working full time and hoping to retire in a year or so. If Tris and Greg get out here maybe we can swing by with Asher again this summer. However, not sure about their plans. Take care…and thanks for the musings…they are beautiful as always.

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  4. Something very powerful and valuable with your words ~ while modern medicine, and advice from experts may be the most logical step, never underestimate what your body & spirit has to say about how to approach the day (and the days that follow). To hear how you have made your decision “By choosing to stop, I found strength and peace” and how comfortable it has been in doing so. Very moving and wish you success on your new treatments.

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  5. Hi, John — Thanks for another beautifully expressed and thoughtfully composed entry. Sorry to read of your need to change chemotherapies. After Pomalidomide didn’t prevent streptococcal pneumonia (twice), I began Daratumumab in May. I’ve been on it for five weeks. I get Dex 10 mg IV before each dose, Zertec and Tylenol orally. Despite a decrease from 20 mg orally, the Dex still causes me the same grief — heartburn, hiccups, bloating, wakefulness — that I’ve had for the nearly eleven years I’ve been taking it. As for the Dara, my first free light chain kappa results went from 770 to 880 and my m-protein went from 0.9 to 1.5 after four doses. My doc says the increase is not unexpected, and she sees many of her patients’ first results go up before they come down. So: a forewarning. Also, I had a very brief reaction — scratchy throat — within a few minutes after the start of the first infusion. (That’s why they run it in exceedingly slowly your first time and give you prophylactic meds, as well as having other “reaction” meds at the ready.) I may or may not have had a little swelling in my throat as well, but I was so attentive to that possibility I may have imagined it. My nurse shut down the infusion, as soon as I reported the scratchy throat, for 30 minutes, gave me lots of Benadryl IV (which made me talk drunkenly and then made me have cat naps the next couple of hours). But no side effects/reactions have happened since then, four infusions later. I wish you the best of the best of luck. And I congratulate you on your sense of needing a break and carrying out the idea. In May of 2015, Cytoxan, which I was taking in combo with Carfilzomib and Dex, gave me many, many skipped heart beats per minute, making the least task exhausting. I told my doc I’d rather die than continue Cytoxan and we stopped all my chemo (not Dex, though, to my dismay) especially, my doc said, because I turned 70 in May and he wanted me to have some quality life. Ken and I took the opportunity to visit Yellowstone for eight days and had a great time. May Dara treat you well, give you a long stretch of high quality life, allow you unlimited gardening, and keep you hiking for years to come. David Bennett

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