My Myeloma Journey: From Despair to Active Acceptance
By Lois Rudnick
For 9 years my MGUS (monoclonal gammopathy of undetermined significance) was monitored annually. I had not a care in the world because only 1-2% of MGUS patients go on to develop multiple myeloma. That wouldn’t be me. Until it was. I went from 0% cancer to 80-90% myeloma in the bones of my back and hips and shoulders. I was Stage 3 and high risk in a few months. Those months before and after my diagnosis in February of 2019 I lived in excruciating pain, convinced I would die or, on my worst days, wanting to die.
What saved my psyche?
1) The knowledge from my pain doc that the Revlimid, Velcade and Dexamethasone would probably kick in within three months, although I didn’t believe him until it did.
2) My adoption of my avatar, Wonder Woman, who dressed fit to kill in halter top and bikini pants for radiation. I accumulated all the accoutrements of her outfit over these three months—bracelet, crown, magic power bracelet, and oodles of socks. Here “consort” took her out on adventures every weekend no matter how heinous she felt, which she posted on Facebook. Wonder Woman became my moniker and provided me, my friends, and family with a way to laugh through the pain.
3) Joining a wonderful myeloma support group in Santa Fe that meets monthly and offers lectures from outstanding medical professionals.
4) My excellent tell-it-like-it-is oncologist in Santa Fe who the chemo “suite” staff refer to as the “Wonder Woman of the Onco team.”
5) My specialist in Denver who provides consultation on my treatment.
6) Lots of support from friends and family here and from back home in Boston.
7) My Myeloma Coach, Bonnie Falbo, who is there to answer every question, encouraged me to get a second opinion, and provided me with an explanation of my “aggressive” and “complicated” disease that was much clearer than my oncologist has been able to do.
I went into remission in June 2019 on my 75th birthday. I refused an autologous stem cell transplant because of my age, the chemo toxicity, and my in-depth research and interviews with myeloma patients who both have and have not chosen to have one. I relapsed in January 2020, started a new regime that failed and am now on a third regime that may fail as well, which is why I am going to see my specialist in Denver to discuss my options for a backup plan at the end of May. Coach Bonnie has put me in touch with SparkCures, who are experts on matching myeloma patients with the best trial options for them and I am very much looking forward to talking with him.
As horrific a disease as this one is, with no cure, and no two profiles alike, I have actively accepted it since my first remission and done everything I can in terms of research, cooking, eating and exercise (walking, hiking and at-home gym, since COVID) to be in the best physical and mental shape I can be. I have been lucky to have the strength to continue to write (I just finished my 10th book), work with the public schools, teach, lecture, and involve myself with organizations that care about progressive political, social, and economic change. The upside of having cancer can be, and has been for me, a visceral sense of one’s mortality that can inspire a commitment to “living well” as the best revenge, to quote a famous poet.
Lois Rudnick is a retired professor of American Studies from the University of Massachusetts Boston, where she taught for 36 years before retiring to Santa Fe, New Mexico. She has published and edited numerous books and articles on the artist and writer communities of northern New Mexico and lectured at home and abroad on modern American history and culture. In Santa Fe, she teaches life-long learning courses on her favorite subjects: Immigration history and Multiethnic literature, Mark Twain, and New Mexico art and culture.