BY JIM OMEL
One of the most predictable things about myeloma is its devious unpredictability. Why do half the people who get this cancer die within 5 years, despite receiving the best treatment they can find? Why do the other 50% live longer than 5 years, some much longer? A member of my support group (Willie…..real name) had a transplant about 12 years ago and has had no therapy since then. He has had no relapses and continues to enjoy normal labs. Why?
I have had myeloma for 19 years and have led my support group for the last 17 years. I fully expected to die many years ago, and have remained the only survivor from our original group. I attended most of their funerals. Recently it was necessary to fill out a form briefly listing my original year of diagnosis and relapses. I wrote, “Initial dx in 1997, relapses in 2000, 2006, 2010, and ‘any day now’”. I have no symptoms, am taking no maintenance meds, and have had normal labs. Despite these 6 glorious drug-free years, I can truthfully say that ‘any day now’ accurately describes my fear of recurrence ever since I stopped Revlimid and Velcade in 2010. Every deep ache or lasting pain reminds me that each of my relapses came with bone erosion and unrelenting pain. I fully anticipate that the next lab will be the one that shows an abnormal immunoglobulin electrophoresis or serum free light chain rise. I don’t consider my myeloma return as “if”; it is considered “when”.
All of us with myeloma were shaken and terribly saddened by the sudden death of our energetic friend, Liz Smith Conley. Lizzy sought and received the best care possible. Why was her cancer so aggressive? Why did Pat Killingsworth suddenly die from myeloma after educating himself and studying best treatment options? Likewise Mike Katz, and the list could go on and on…. On the other hand, why does Ron from my group (real name) continue to be free of myeloma despite no treatment for many years, just like Willie? Why did dear Jim (real name) suffer aggressive relapse a few months ago after about 13 years of no treatment whatsoever?
Experts tell us that myeloma is at least 7 different diseases, defined by their genomic characteristics and risk status. I understand that, and realize patients with 17-p53 deletion have high risk myeloma. Why then has Nancy (real name) who has that ominous chromosomal feature done so well? Each month she greets me with a smile and a reminder that she and Jerry pray for me every night. I know she means it. Does God hear her? Why have I been so lucky the last 6 years and so many, many people more deserving of grace than I suffered recurrence and death? Sometimes I feel “survivor’s guilt” that I have been blessed with ‘myeloma light’ despite my broken back and ribs.
Andrew Gordon is an excellent writer for the Myeloma Beacon. In his October 8 essay he explained his mental quandary over stopping all drugs and probable development of secondary MGUS. He said, “Why do I have this nagging sense of concern?” and noted that even the most optimistic among us have moments of doubt. He reported, “It seems odd that, now that things appear to be as good as I could hope, I cannot seem to let the apprehension go”. Andrew…..me too! Even after 6 years of CR I feel exactly the same way you do.
Cherie Rineker wrote an equally inspiring column Oct 6 for MyelomaCrowd in honor of Lizzy Smith Conley and told of the remarkable similarities between these myeloma warriors. I read it to my wife this morning stifling the same tears Cherie describes in her final paragraph. Everyone with myeloma can identify with Cherie’s stirring comment about “the only fear she has left” being how her daughter will cope with her death if she doesn’t make it. Me too Cherie! Who will push my wife’s wheelchair and dress her each morning and feed her if I die of myeloma? This cancer is so horribly unpredictable. When will mine become active again? When will the shifting clonal tides of myeloma make it aggressive and deadly for me? For Willie? For Ron, Nancy, Jim? When? (not if).
Life is absolutely not fair. What is fair about a child with brain cancer? Why must Cherie and Jenny and all of us suddenly cope with Lizzy’s young death? What is fair about her two children abruptly losing their mother? Life is not fair and never will be. We must however live and enjoy each day God gives us without ever knowing what day the oil will run out in our personal lamp. We all will die. How can we live and enjoy the happiness that is possible each day if we let the fear of that death consume our thoughts? I hate myeloma and its fickle unpredictability. It is no worse however than the sudden diagnosis of inoperable stomach cancer which blind-sided my brother just three months ago, or the unrelenting progressive multiple sclerosis my wife endures every day. Life is not fair but God doesn’t give us more than we can handle. Myeloma remains bitterly incurable. We are developing better answers and accurate measurement of sustained MRD. Confirmed test accuracy of this deep response will eventually give those of us waiting for the other shoe to drop an objective measure of peace. I will write more about MRD in an upcoming column.
Each day is a gift from God. Enjoy them all.
Jim Omel MD