Part 1 of this post is here managing-diagnosis-from-super-woman-to-cancer-patient-in-two-seconds-flat.html.
The idea of a medical diagnosis has many different meanings. Years ago my diagnosis of thrombophilia, a blood clotting genetic disorder, was welcomed because it explained my back to back miscarriages and then helped me keep my son in-utero and have a healthy baby. (I was able to do this with daily self-administered Levonox injections directly above my belly button for the first 8 months of pregnancy and twice daily self-administered Heparin injections up until delivery oh and 6 weeks of Levonox after birth.)
Despite all that good, the idea of a blood clotting disorder could be deadly - it could lead to stroke and or hemorrhage and or deadly blood clots. Despite all of that potential death, my diagnosis was celebrated by me and my husband and family. Also, it is considered no big deal to anyone who knows about it outside our family and did not mark me in the way "cancer" does. The idea of "cancer" is, for most people, very close to dying. It is nuanced and yet people treat cancer as they would a terminal diagnosis even though there are many people living with cancer who are not terminal.
With my cancer diagnosis, people did think it was a big deal. Now I know cancer can be deadly but is it any more so than my thrombophilia had the potential to be before diagnosis and during 4 pregnancies -- I don't know?
I do know that it was something I could just celebrate. Did I celebrate my cancer diagnosis? Not right away - but eventually, I did - because without the diagnosis and the screening and the fact that I was freaking religious about following doctors orders and actually going for mammograms, I would probably be dead.
Upon my diagnosis in November 2016, I was kind of frozen. I had no idea what to do or how to do it. My gynecologist, Dr Prue, was able to see me that very night. My mom, husband and I sat across from him just shell shocked. He patiently guided us through some valuable information and told me, sadly, that he is giving this information more and more lately. Though the breast cancer diagnosis stat for women is 1 in 8 it does seem to be almost higher in my hometown. He gave me a list of doctors and hospitals, though I was thinking I would do everything local to my home so that I could be there for my kids and my job and my family... You see how invasive this thought process was for me? I had cancer and yet I was thinking of everyone ELSE of everything ELSE and not of me and what could be best for me.
I met with the local team and it just did not feel right. I pushed myself to go to Memorial Sloan Kettering - I live outside of NYC and people come from all over the world to these hospitals so I thought it made sense for me to check it out. From when I walked in to The Breast Center, I knew I was in the right place. I just knew. I knew the surgeon would take it all out as soon as I could stop asking him whether or not I was going to die.
My first appointment at Sloan was on December 5; by December 16 I had my mastectomy and sentinel node removal surgery. It was so fast but it felt like forever. Every day walking around with cancer in your body is one day too many.
I used to work full time in midtown Manhattan and yet I was considering not going in to NYC for my cancer care because I did not want to be out of the way. Just thinking about it now makes me realize how stupid I was, how caught up I was in all of the wrong things. I am so happy I made my choice to go to Sloan.
My surgeon, Dr El-Tamer was so kind and when I cried, he held my hand. While he wanted time to find out exactly what surgery I needed, I balked because I just wanted to know when it would be out so he gave me a date on the operating room without knowing for sure if it would be mastectomy or lumpectomy. I fell in love with him even more right there.
There were so many appointments and follow ups to do between my first appointment and my surgery and through it all every single person that helped me with MRIs, PetScans and Radiation Mapping were all amazing and kind. No one treated me like "cancer patient 101"; I was me, I was Lisa - I made lots of jokes, they laughed at all of them. I got hugs and well wishes from so many of the staff and I really felt like I was loved and cared for every step of the way.
I know a lot of people write about their cancer treatment experiences differently -that they felt they had no control and that people could be brusque - for me, it was absolutely the opposite. I mean, I realized right away I was not in control because I did not want to be anymore. For the first time in my life, I wanted to listen to my doctors and follow the prescribed course of action. I HAD to do so because this was the first time I was truly sick.
Before I was diagnosed with cancer, my allergy induced asthma was acting up and my allergist told me, "If you did not have the flu shot, I might have had to put you in ICU if you got the flu." And I was just so incredulous and told him, "Well, that is not possible; I cannot go to the ICU - I have children." It seems so laughable now - I thought I was in control of my health and on top of my game and had no reason to think otherwise.
I am so happy I wound up at Sloan and that I learned to let go. I will do another post about the time up until diagnosis and also then another post about how the chemotherapy experience was, also at Sloan. My radiation was done locally to my house.
This is what I am sharing in my time between.
In case #TLDR, here are my quick tips on what to do post breast cancer diagnosis:
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