Fear

First chemo treatment since pneumonia today.  Felt like I was going to my execution.   I was scared of the strong drugs, my reaction to the strong drugs and the other big decision that I need to make in my care. 

When I arrive my Doctor tells me that the 'Tumor Board' said that I could reduce my drug dosage of KRD "if I wanted to."   Why should anyone listen to me?  I am not the doctor, I am only the patient, capable of reporting side effects.   "I am not capable of making such decisions about my own health care but the Standard of Care doctor in New York suggested last week that we should reduce my KRD dosage, so based on his suggestion, and not mine,  I am happy that we are reducing everything. "

"You understand that this lower dosage will not help your immune system," Dr. Currently tells me.  I understand that, but I am confused that you are telling me this.   "Before you had cancer your immune system was bad.  Because of your cancer your immune system is bad.  Because of the chemo your immune system is bad. So these are three good reasons that you have a very weak immune system."  Not really good reasons, but...I am surprised but very happy that she is acknowledging my immune system is very weak.  I am confused as to why she is telling me this now but I am grateful for the dialogue. 

I am terrified of making the wrong choice between building up my immune system in the next year or trying to rid my body of cancer and pray that my immune system behaves.  I need to choose between the two best multiple myeloma doctors in New York this week.  I know that I am lucky to have seen them both.  Their approaches are very different. 

The Road Less Traveled doctor suggests I focus on building up my immune system while getting radiation treatment. Stop chemo and start all over again when the cancer comes back.  Could be in three months.  Could be in two years.  Shouldn't come back worse than it is now, he said. 

The Standard of Care doctor suggests reducing the dosage of my chemo, harvest my stem cells in May, transplant them back into my body in June.  Then wait and hope that I stay in remission for a few years.  By then, hopefully I will be eligible for CAR T therapy that is about to be approved by the FDA.  No harm in hoping.  Could come back worse than it is now, due to the cytogenetics. 

The weight of this decision is heavy.  I cried in my chemo chair today from fear that I will make the wrong decision.  The implications of the wrong decision could be great. 

I am someone who seeks the road less traveled.   I loved the Road Less Traveled doctor's approach, but I don't know how successful it has been.  Is it possible that I will be in remission with his approach for five years, at which time maybe I will be eligible for CAR T?  Can I skip the bone marrow transplant with this approach?  I feel like I choose the 'standard of care' I am not being true to myself; shouldn't I try a new approach?  Every decision in my life is evaluated by the risk/reward ratio.  I fear that the risk of the unknown with a reward that is unknown is impossible to compare to risks that I understand and rewards that are probably somewhat predictable.  It is a difficult decision.    

My Advice...

Know your weaknesses.  Mine is my immune system, my cancer and the side effects from the chemo.  Know yours: suffering kidneys?  Low platelet or red blood cell count?  Communicate with your doctor to set your priorities as they may shift over time.   Please remember that priorities can change and your treatment should change accordingly.   Make sure you know the risks and rewards of everything. 

Be communicative.  Be kind. Be grateful.  Give love. Receive love.  Eat vegetables.  Sleep. 

Sending gratitude for your reading this.  Sending hugs and hope and warmth and love to you.

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