First Year Objective: The Deepest Response Possible

I am not, and never have been, a Grateful Dead fan.  Not even a little bit.  I do find one strange symptom of aging, however, is that I repeat small clips of the same song over and over in my head constantly.  What A Long Strange Trip It's Been.  I'm only about a third of the way through.

I had been trying to decide whether to continue with KRD (chemo) and proceed to the bone marrow transplant or try a novel, and undocumented, approach of stopping chemo and doing radiation (only) to reduce the tumor in my back. There is no data to indicate the success of this approach.  The benefits of the radiation approach is that I would give my body a break from these toxic chemo chemicals, and side effects, and give my immune system some respite from the havoc the chemo drugs wreak.  It was a much easier path.  

When I asked the Road Less Traveled (radiation) doctor what the worst thing that could happen by following his approach, he said that the only downside is that when I relapse, I would just have to continue on the KRd (chemo) as before.  That did not seem like a downside to me, which is why I was prepared to try this approach. 

As I told the Standard of Care doctors of my decision, they read me the equivalent of a medical riot act, for which I am terribly grateful.  They told me that I am lucky to have the drugs that exist today; 35-years ago I would have passed away within a year of my diagnosis.  They gave me information that the Road Less traveled doctor did not: because I have a 'high risk' genetic predisposition, when I relapse my cancer could be much worse.  It could be harder to control than it is now.   I could have new high risk genetic factors in my body upon relapse which could make everything much worse. 

Most importantly, I learned, thanks to the Multiple Myeloma Research Foundation and my Standard of Care doctors, is that the best predictor of my long-term outcome is my 'depth of response' to cancer in the first year.  The further I 'reduce' the cancer in my body in the first year after diagnosis, the better my long-term prognosis will be.  It is the current practice in oncology to rid my body of cancer, as much as possible, in the first year through chemo and a bone marrow transplant,  No shortcuts will produce the same results, apparently.   As my friend Jillian said, "No way to go but through." 

If it weren't for my high risk genetic predisposition, the radiation may have had a reasonable risk/reward ratio.  Because of my genetic predisposition, it does not. 

My Standard of Care doctors told me that I needed to take my disease more seriously than I was taking it.   I am taking it seriously now.   My immune system is just going to have to put up with that. 

In summary, 

I am grateful that I have doctors that care enough about me that they told me I needed to take my diagnosis seriously.

I am grateful for Grace, the amazing nurse at the MMRF, who sends me research to help answer the many questions that I ask her. 

I am grateful for Anne at the MMRF who makes me feel like she had nothing better to do today than answer my questions, despite the fact that she is probably the busiest person that I know.

I am grateful for my family and friends who listen to me, email me, call me, write me and text me, walk with me.  You take such good care of me.

I am grateful that I don't live in the Ukraine, Afghanistan, Syria one of the many centers of tragedy in this world.    

I am grateful for my employer (s), who are kind and patient with me during this messy chapter. 

I am grateful for you.  Thank you for reading this.  I am so deeply grateful for it.  Please post reactions, comments, questions, criticism.  Feedback helps keep this relevant. 

Eat, sleep. love. 

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