Her condition was diagnosed as light-chain myeloma with free kappa light chains being the culprit. This compounded a prior acute kidney trauma, and a course of treatment was recommended. After a year and a half of treatment for the multiple myeloma (Revlimid + dex, then Velcade+ dex, later adding Cytoxan), a stem cell transplant was recommended. In March 2014 we traveled to the clinic for the transplant, using her stem cells that were collected the previous May.
Our expectation was for two to three years (or hopefully more) of remission and treatment-free time, followed by a re-emergence requiring a resumption of treatment. We hoped that in the intervening years new advances would continue to be made, and more effective treatments with fewer side effects would be available once she needed treatment again.
In any case, we went into the transplant with a hope for several years of relatively normal life awaiting us after the transplant. Statistics, particularly for the clinic, bore out the reasonableness of this hope. We made plans for all the things we wanted to do and places we wanted to go while the disease was in remission.
Sadly, this was not to be. I will spare the reader the details; suffice it to say that in the third week, things went drastically wrong. After many subsequent weeks of struggle and deterioration, she ultimately succumbed.
And so, 100 days after arriving at the clinic, a once proud, strong, independent woman passed from this world too soon, deprived of the promised years of symptom-free and treatment-free existence and the chance to benefit from new advances in the management (or even cure) of this nasty disease. And tragically, a devoted husband of forty-nine years, a loving son, an admiring grandson and most cruelly an idolizing granddaughter now have this wonderful person only in their memories.
What went wrong? This question will haunt me for my remaining years. As a layman, it is impossible to know the answers and imprudent to speculate. That said, I believe two factors directly led to her death:
- Something mental was altered during Week Three of the treatment and I believe this was instrumental in her demise. There was a cardiac event while she was in ICU, I can only speculate that the negligence of the ICU staff in responding to the cardiac event in a timely fashion prolonged it sufficiently to cause the damage. It is known that cardiac events can have significant effects on the psyche. On the heels of this cardiac event, anti-nausea drugs were used in combinations and at levels that resulted in a borderline comatose condition for several days. I believe that mental state is key to getting through a severe trauma – which is what a stem cell transplant must be considered. Since we cannot measure mental function and well-being as we do physical characteristics (e.g. through blood chemistry), there is no conclusive evidence of her mental state change. However, as one who had shared 51 years with this woman, I can say without equivocation that something drastically changed mentally, and her characteristic strength of purpose and will to survive was lost in that fateful week.
- A few weeks later, she was presented with an option to end her struggle, this by a medical practitioner in what appeared to me to be a grossly negligent dereliction of duty in the treatment of a medically compromised, severely sleep-deprived and significantly depressed – but definitely non-terminal – patient. I believe that from this point forward, her slowly reemerging strength-of-will became focused on dying rather than living.
