In the picture above, Reesa is holding a letter she received from her first mammogram giving her an all clear. But following her instincts, she continued to ask questions.
I told everyone at the party about my diagnosis. I had done so much research on line, and was fortunate enough to find Terry Lynn Arnold in those searches. When my oncologist gave me the full details and protocols he was right on target with everything I had learned about treatment for IBC. He encouraged me to continue on the path of knowledge, as frightening as that might be for some patients. He saw ME, and knew this was an important aspect of my personality to get into the nitty gritty of every damn thing. He encouraged me to go to Mays Clinic after my chemo was completed. I started talking to anyone who asked (questions came especially when the hair began to fall out).
I tried keeping a blog for a few years, but my heart was not really in it. I think the memories traumatized me, especially as others from our group were taken much too young. Why am I still here when she had a beautiful family with children to care for?
All of those friends, family and strangers I spoke to were my support group. I am not as active talking about cancer as I used to be, mostly because I am not in doctor’s offices and clinics and hospitals as much as I was back then. I often think about the struggle for many of us to protect kids and elder family members from the harsh reality of IBC. I seldom feel the urge to wish people a happy birthday and I know why, even if they don’t. Makes me feel so awkward and awful to be this way.”
I knew nothing about complications from removing lymphatic nodes, so today I would ask them to measure my arms and trunk before surgery and insist on having a microsurgeon available for lymphatic bypass during the procedure. This was not as readily available 11 years ago, but I was lucky I learned a few days before surgery that knowing your starting point of inflammation by measuring, would let you know immediately if your body is collecting fluid by an increase in arm or trunk size.
Also, I had some pushback for asking them to remove both breasts for my symmetry (so being more prepared for that discussion was an important thing I missed, and I could have learned much more about complications of reconstruction, average number of surgeries each breast requires for that recon, etc. had I known what to ask the team.)
I felt I had to do my own research and defend the “psychological repercussions” the doctors seemed so worried about…but that research was helpful, and they knew I had asked myself all those questions.
Bottom line, ask about everything that you can think of no matter how silly or unsure you are of the subject, because they should have the answers to guide you in all of these many decisions.