Letters From Cancerland: This
Several years ago, I got into an argument with an oncologist – not my oncologist – over a significance of my IgG jumping up 500 points from the previous reading. When I expressed great dismay, he snapped, “Oh, do you have a medical degree and extensive training in hematology? Do you know how to read lab reports better than I do?”
If I had not been so rattled by his attack, I would have retorted, “No, but I have lived in this body for over half a century and with myeloma for over five years, and I know what my body is telling me.”
My body is whispering to me again, steadily and quietly.
“I am tired.”
“I am wearing down.”
My body is not saying “I am giving up.” Nor is it saying “Time to cash your chips in.” My lab numbers are stable. Two oncologists are very satisfied with what they see. But my body is talking to me, softly, saying that the long walk towards the mountain, one which has lasted far longer than anyone thought possible, is starting to near its destination.
I recently shared this feeling with my oncologist of 14 years, my myeloma specialist of three years, and my personal physician of many decades.
My local oncologist heard me out and said in a matter-of-fact tone, ‘Well, I hope you’re wrong.” In years past, he would have given me shorter shrift because he wasn’t ready to hear me bring up end-of-life discussions. I’m not sure he’s ready to listen yet, but he does not change the topic.
My myeloma specialist listened intently, then let a long moment pass in silence. When he was ready, he spoke quietly and calmly. CAR T-cell therapy, “if it worked” for me, “might” give me a year or two without treatment, and that would be a break for my body. He carefully noted that full remission is not likely attainable for me, and that he felt there were no new promising drugs in the pipeline. We discussed and mutually rejected an allogeneic (donor) stem cell transplant. Then he said, in that same calm voice, “you are very far out on the [bell curve] of survival.”
“I know I am,” I replied. “And I’ve made peace with that,” I added. He nodded and we moved on.
It was my personal physician, a family practitioner who initially caught the myeloma, who responded in the way that resonated the deepest with me. She and I go back 25+ years as physician and patient. We are former neighbors and good friends outside of the office. When I told her what I was hearing from my body, Dr. Pat closed her laptop and bowed her head. She asked, her voice thick with emotion, “What do you want to do with your remaining time?”
We talked for several minutes. At times we both laughed. At other times there were broken voices and a sparkle of tears. I left her office grateful for the gift of her in my life.
After all these conversations, my husband Warren and I went to the Pacific Northwest to spend much desired time with family. I watched our granddaughter master a scooter, and my adult sons talk and laugh together. On the way back, we traveled south to Sacramento to see longtime close friends, spending a day talking and laughing and eating before boarding a train headed east through Colorado to Chicago. Watching the country unroll before me, Dr. Pat’s words came back.
“What do you want to do with your remaining time?”
This.
This.
This.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Dearest April, what an amazing piece of writing. I can only send my love and best wishes to you. Thank you for being so honest and so realistic. I can’t begin to imagine how this feels for you and Warren but, of course, you’re expressing my deepest fears and, I imagine, the fears of so many myeloma patients and their loved ones.
Marjorie, thank you for your loving, honest response. It lifted me up to read it.
April,
I so enjoy your columns and honesty. It sounds like you have a great medical team that listen to you. Multiple myeloma makes us aware of what our body is telling us and makes us contemplate end of life. I am 7 years in (although probably had several years before diagnosis) and I think each and every day how lucky I am for each day, because I wasn't sure I would see 7 years. Enjoy every day and thank you for the gift of your columns!
Thanks for this column. It had a real impact on me.
David
I agree with David, thank you for sharing.
You expressed what I believe is in the back of every myeloma patient's mind, but is so often left unsaid. (I certainly think about it.) Thank you! This disease is a blessing and a curse. Many people go through life thinking their time is unlimited. We know it's not. Your reminder is much appreciated -- every day is a blessing.
Thank you April. I'm sure this was not an easy column to write, but it reminds us all that we must be prepared to talk about this with our doctors and our family. It is part of the process like all the rest, just one we hope to avoid.
Thank you all for the support and love. It means a lot to me. More than I can express. You all acknowledged that those of us with myeloma live with the sense of time every waking minute. I now move through my days not just ("just") as someone who has a chronic, incurable illness but as someone who is chronically ill and feeling it physically most of the days. That being said, life goes on, and so do I.
I am so desperately aware of "the end" that I cannot enjoy "this."
Thank you, April, for this very personal and compelling column. Your courage helps sustain mine. Wishing you much, much more of 'this'.
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