My appointment with Dr. Gralow today was good, she is pleased with the results of treatment so far. She agreed that it was time for another port placement, so I can get rid of this annoying PICC line in my arm. My skin is going to get to breathe again! Now, this also means I have to go through the port surgery again, but I’m trying not to think about that too much. This time I’ll be having the procedure done at the SCCA, and I’ve heard they do a great job. Then I’ll go on straight to chemo the same day next week. But after that is my week off, so I’ll have 14 days to rest and recover before the next chemo dose.
Today I also went to a little sub-group that my Young Survivors Support Group has started, it’s just for women with Stage IV cancer. It was so great! The main support group is nice and I’ve met some good people and I like going. But you have to share your story every time, and my story is exactly what all those women are fearing. And the topics just don’t always apply– I don’t need to talk about breast reconstruction for two hours. I could give a shit about breast reconstruction right now. A year ago would have been a different story. So anyway, those women need a place to talk about that stuff, but I don’t always feel it’s the right place for me to be.
So this sub-group of women with mets is six women, four who had recurrences of cancer that were Stage IV and two that were diagnosed at Stage IV from the get-go. We call ourselves the “Been There, Done That Girls.” What some of them have been through is amazing and heartbreaking. One woman, my age, diagnosed with mets everywhere and tried every treatment. She is triple-negative so not many treatments are available to her. She went to MD Anderson in Texas with two other women she met on the message boards and talked to them about a stem cell transplant. All three women agreed to try it, they had nothing to lose at the point they were at. The other two women did not survive, but she has so far. I can’t begin to imagine what that must be like.
Anyway, I feel like this is a group of women who understand what it’s like to live with cancer. They understand and are frustrated by the way that late-stage breast cancer is ignored by the media and no one ever wants to acknowledge that women die every day from this disease. They have struggled with friends and family in denial or unable to face the truth, they have had great treatment results to celebrate, they have had setbacks, and all of them have been through more treatments than I have so will have advice about drugs and procedures and such. I feel lucky to have found them and to have these women I can celebrate the good news with– but also sit down with and say “this sucks, I’m really pissed off today.”
Oh, the picture! After my mastectomy Rosaleen Rose sent me that beautiful scarf she had knitted. Now she has made me a lovely matching hat! She made me another hat too that I will be wearing to sleep at night because it’s so soft and fits perfectly. There’s a pic of that one on the photo page.