a reflection.

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Well, here I am after a pretty long night.  Until yesterday, my expansion experiences had been super smooth.  After each of the other procedures, my chest was just slightly sore and I only needed Tylenol to help with the pain. However, after yesterday’s appointment, things weren’t quite as easy.  I’ve been extremely sore throughout my arms, chest, and stomach and had trouble moving around most of last night. I couldn’t even sit up without assistance when I needed to grab the amazing salted caramel cookies Kelly left for me (Thanks again, Kelly!).  The pain kinda surprised me because I received a smaller expansion than usual yesterday. Maybe the procedures get more painful as you go along?  Not sure… I’ll ask next time.

Before having this surgery, I just never realized how the muscles in your chest are so connected to the muscles in your arms, back, and stomach.  I finally broke down in the night and took a pain pill which helped tremendously.  I probably should have taken one before I tried to sleep, but I have been trying to go without so I can start to drive more and go back to work sooner.  Oh well.

Enough complaining!

I wanted to spend my post today telling you about my experience at Gilda’s Club last night.  In the event that you are not familiar with it, Gilda’s Club is an amazing organization that offers free support to those affected by cancer.  There are Gilda’s Club locations around the country and I have always heard wonderful things about the location here in Louisville.  If you were wondering, it’s located down in the Highlands on Baxter Avenue.

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I went to Gilda’s Club last night because they were serving a free dinner… a HUGE bonus since I hate to cook… and FORCE (Facing Our Risk Of Cancer Empowered) was holding a group for people affected by the BRCA mutation.  I was really looking forward to going because I wanted to connect with and learn from other women who were also carriers of the BRCA mutation.  I also felt like I might have the chance to help other people who were contemplating prophylactic mastectomy.

When I arrived at Gilda’s Club, there were tons of women and men who were gathered in a meeting room waiting for dinner to begin.  I quickly realized that several other support groups were meeting as well.  I was told that we would all eat dinner together before we broke into separate groups.

I was pretty nervous as I waited since I went alone.  I finally struck up a conversation with a sweet older lady who sat down next to me.  She explained that she was a breast cancer survivor.  I’m not sure how much time had passed since her last diagnosis, but she looked great!  After we went through the buffet line to get our dinner, she asked me to sit next to her as we ate dinner in the dining room.

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The dining room was filled with large round tables and eventually several other women joined us at our table.  As we ate, it became apparent from dinner conversation that all the other women were breast cancer survivors.  Let me tell you, they had some amazing stories!  One of the women had been diagnosed with breast cancer at 32. Since then, she’d had 5 metastases to her brain and five separate brain surgeries.  Her most recent surgery was just 8 days ago and she looked absolutely amazing.  Another one of the women had been fighting breast cancer for several years and is planning to have a hysterectomy next week to avoid any other hormone related cancers.  Throughout the entire meal, I listened to all of their stories, their challenges, and the positive support they provided one another.  It was so inspiring to see how encouraging and optimistic each woman was as they discussed their treatments and their concerns.

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After dinner, we broke into our groups.  I headed to the BRCA group where I joined two other BRCA+ women and a genetic counselor who led the group.  One of the women in the group is still contemplating surgery after five years of knowing she carries BRCA1.  The other woman in the group was a few years older than me and just found out that she was BRCA+ two weeks ago.  It was a great chance for me to learn about the additional surgeries I will need and how genetics play a role in making me a high risk adult.

If you are BRCA+ in Louisville, or anywhere else for that matter, I highly recommend looking at the FORCE website (facingourrisk.org) to see if there is a group meeting near you.  You could also contact your local Gilda’s Club and I am sure they would try to help you if you needed it.

After about an hour, our meeting ended and Super Husband picked me up and brought me home.

Now that the meeting is over, I’ve had some time to reflect on everything that happened.  I really learned a lot from the BRCA group.  However, I think my dinner with all the amazing breast cancer survivors was even more beneficial.  I can’t stop thinking about how lucky  am to know I will most likely not become a breast cancer survivor.  I mean… one small difference in my path and I might not have ever known that I carried the BRCA2 mutation and needed surgery.  I so easily could have been attending a survivor group instead of a BRCA group. I feel so blessed.

I also can’t stop thinking about the strength that each woman demonstrated as she shared her story during our dinner conversation.  As I’ve written this blog and shared my journey with others, everyone has been so wonderfully encouraging.  People continue to tell me that I am so brave and courageous.  I feel proud for having the nerve to have a prophylactic surgery.  However, my bravery is NOTHING compared to the women who I sat with at dinner last night.   My courage is FAR from what survivors have had to muster when faced with huge numbers of doctor’s appointments, chemotherapy, and radiation.  My strength is small compared to the bravery my mom showed during her stage 4 diagnoses and five recurrences over the course of 8 tumultuous years.

Last night made me realize that I am so thankful for survivors who have helped pave the way to better breast cancer treatment and prevention. There are huge numbers of women who will have better experiences with cancer or not deal with breast cancer EVER because of survivors’ willingness to participate in clinical trials and genetic testing. Because of their courage and bravery, treatments have progressed tremendously and vast amounts of research has been conducted in an effort to improve the lives of future survivors and previvors.

If you are a breast cancer survivor, I want you know that I so admire your experience. After seeing my mom and grandmother suffer through treatments for so long, I have seen how heart wrenching it can be to have your whole life changed due to surgery, chemotherapy, radiation, and fear of recurrence.  You are the bravest, most courageous women I know.

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Thank you.

Jayne

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2 thoughts on “a reflection.

  1. Danielle Lewis says:

    Jayne, I am loving every post even more than the last! So many details people probably want to ask, but don’t know how or aren’t sure if it’s okay. Reading this blog makes me feel more knowledgeable, more connected to you and even more proud (if that was possible) to call you my friend. xoxo.

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