The Things That People Say

It is a strange thing going through the process.  I’ll say it here first and it might spare you the reading, two things I do know

1) People don’t know what’s going to happen so they can’t be blamed for the things they say to fill in the blanks

2) People think they do know what is going to happen and they have a lot of experience with seeing similar situations so they speak from their experience, but what they say isn’t necessarily going to happen as each individual is different.

My first Doctor was a holistic doctor in New York.  He gave me a place to go when I was not sure how to proceed and some of the things that we worked on while there were helpful and kept me alive, and some were not successful.  He mentioned when he had cancer a number of years before and that he had cured himself of said cancer. His quote was “What happens to me is between God and me. It is not up to medicine to decide.”  I liked that idea and decided to use it.

My next Dr. was exceptionally negative about my prospects, she was clearly troubled by the state of my condition giving me 2-6 months to live in April of 2019 on admission.  I have to admit, I looked pretty rough at the time, and was underweight and weak. In addition, she had lost her own sister to breast cancer a few years earlier and was no doubt hurt, impacted and frustrated by the fact that she couldn’t help her, or me for that matter.  In subsequent conversations, her notes on me had comments such as “patient appears to be in denial of her condition.”

The wound nurse – who I loved by the way, a great a brilliant woman was generally optimistic. In our last meeting in July she said to me “You know this thing is going to take you out – right?”  to which I responded, “actually I don’t know that, whatever happens to me is between God and me, it is not up to medicine to decide” and I proceeded to tell her about my dream.  

My next Doctor (for a second opinion) was a delight.  She gave me far more information than the previous people I had met, helped explain things really clearly and the hour I spend with her was the most insightful of all to that point.  She was really general, saying things like, well we can’t know exactly how things will go, but from experience I usually see time lines like 2-5 years or longer and I have many patients who are living normal lives going past 10 years and you wouldn’t know anything was going on with them.

My next doctor after that, is also brilliant in her approach said “don’t expect improvement in these next scans, it’s highly unlikely.  In the event that we do see improvement, I will write a research paper on you for publication to a medical press.”  She was delighted when there was improvement and when I asked her if she would be writing the paper, she laughed and said she’ll certainly be discussing it.

When I called treatment center number 1 in the US in September to find out if I could get immunotherapy there – as I was not eligible for it here after a re-diagnosis to Triple Negative.  The Nurse relayed my call to my new Dr there – as I had switched providers to get to a more positive Dr from my original one.  The response back via the nurse was ” Dr X says – yes you can get immunotherapy here, but it won’t keep you alive, you should stay wherever you have the most social support.  

Well Ok then.  So we have gone full circle and are holding fast to the conversation with Dr # 1, who’s comment – whatever happens to me is between God and Me, it’s not up to medicine to decide.  Let’s have a Hallelujah and some Leonard Cohen served up with that!

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