THE BREAST LOVE IN PHILLY
In April I flew to Philadelphia with my husband to attend a breast cancer conference. I was nervous to fly with a port and with the Perjeta "poojeta" issue. Travel was possible and it went very smooth, so well in fact, that I feel good about scheduling another trip very soon. So first fear was kicked to the curb!
I was a bit nervous to be around a bunch of women that had the same cancer as me. I am not sure why, but I was anxious about the entire situation. I was so very thankful that two of the ladies that I have met locally with MBC were at the conference too. There is safety in numbers!
I was so happy to meet a friend that I had connected with through Facebook in person. We have a VERY similar cancer story. She is just as awesome in person as she is online. I also got to meet some women who have a strong social media presence. In a weird way, they are celebrities of sorts in the MBC community. So I had a few 'fan girl' moments. The one thing that surprised me is that many of my 'so called' celebrities were not as out spoken as I anticipated. They seemed a bit shy too. I expected their presence to be bigger than life. But they were just normal women trying to navigate the same shit I am.
So many emotions coursed through my veins this weekend. I was envious of the oncologists, who were speakers were also practitioners. They know their stuff and they are PASSIONATE about MBC. Why is my oncologist so disinterested in my case? Why does she not know about side effects, treatment and the new up and coming treatment for MBC? It is so frustrating to see that there are amazing doctors out there but living in a smaller rural community you can not gain access to them. I had moments of feeling empowered. We were given lots of practical tips for health and wellness. There is NO DIET that will cure cancer. There is NO special food to make it go away. There is a healthy way to eat, the Mediterranean diet, and that is very doable and does not require a fad diet or eliminating entire food groups. We even got some practical advice for exercise and building muscle. this was also very doable and does not require me to run a marathon. There were many conversations and presentations about the lovely side effects from treatment from bowel issues, sexual issues, joint pain and hot flashes. Practical solutions that I can implement on my own were provided; but also language was given to have conversations with my doctor. Overall, the speakers were amazing and had a passion for helping the MBC community. I go to many professional conferences for my job. I enjoy being a forever learner and the conference material was great!
Now there were a few topics I avoided as I was not ready to face them. One was brain mets. 50% of HER2 positive women get brain mets. I don't have them. Praise God! Maybe I should have went to the breakout session so I could prepare for a just in case moment but I decided not to. There was also a break out session on end of life issues. I just can't go there yet. Is it hopeful or ignorance to avoid the conversation? But nope, I will take a conversation on sex and intimacy, please. I did learn that having cancer does not make you a nice person. That if you were an asshat before cancer, chances are you're still are a jerk. So there is that. People monopolizing the Q and A of the breakout session. People not following the rules for the relax and restore sessions. I was a bit jaded. I expected a bit more kumbayah among our "sisters and bothers" but everyone has an agenda and they look out for number one. So there was shoving and talking over people at vendor booths and there were some cliques of people that might have met at past conferences. This is totally normal human behavior. I think I put us MBC thrivers on a pedestal and expected more.
I LOVED spending time with my husband and I was SO grateful that he had an interest in supporting me and hanging out with other women and men with breast cancer. Though some moments were heavy it was nice to have time to ourselves without our children around. We got to see the Philly LOVE and ran up the steps like Rocky did. We saw Constitution hall and the liberty bell too. I am more of a pop culture connoisseur than a history buff. Philly had the best of both. On this trip I SO wanted to have moments that stood out. Quotes to post from experts. Ah ha moments that took my breath away. None of that happened. I am not sure if I was too guarded and could not let myself feel all the feels. I think I put on my learning hat almost like a professional occupational therapy conference so that there was a wall. Looking at the content as a professional versus a patient. I think I did not want to feel too much. This is probably a coping strategy. I wanted to look good, feel good and be the best little MBC patient in attendance. So crazy the way the mind works
The one event that was incredibly heavy was the a "Die In" put on by Met Up.
I laid there on the ground staring up at the sky and thinking I can't believe this is my life......... It is now May. I never finished writing this blog......The Die In was SO emotional that I have avoided writing about it. SO instead of sharing the gut wrenching emotions that I felt. Feelings that I can't quite capture in words. I will remind everyone that 113 men and women die everyday from metastatic breast cancer. We need research not ribbons. If you feel so moved to get involved, please donate to Metavivor.org where 100% of the money goes towards research for metastatic breast cancer.