As she escorted me down the fluorescent hallway, she casually said “so, you’re just here for a Pet Scan?” Just here for a PET SCAN? Are you kidding me? Doesn’t she know my whole life hangs in the balance here? That these results will affect the future of 4 very important people and probably a whole lot more? That it will determine if I can return to my life work? If I need to go back to chemotherapy? WHAT?
Yup, you read it right. My tumors are continuing to shrink and are way less avid or active. The tumors in my liver don’t really stand out from the rest of my liver and the one under my kidney is even less avid than last time. I am going in the right direction people! Better than stable!!!!!!! Yup, I cried at this news, too choked up to speak. With a terminal diagnosis, I am scanned every 12 weeks. Right after a good scan it is like the tide goes out for a while but in the week leading up to the next scan, it is like the tide is rushing back in. It is a scary place.
This means that for whatever reason the immunotherapy experiment (clinical trial) is working in continuing to drive my own immune system to fight the cancer on its own! Much as the Pembrolizumab (Keytruda) nearly killed me, it is working. Dr. Rachel said she has nothing to compare me to. Only a few hundred women in the world have tried this, and only a handful had the extreme adverse response to it that I did. One other woman at DFCI responded terribly to it and is now diabetic for the rest of her life as a result, but she currently has no evidence of active disease. This is fantastic and miraculous. Funny enough, as good as this was, Tim Blanket and I left DFCI with our stomachs in knots. As he said, it is almost too much to take in and process, especially relative to where we were 12 months ago, when two lines of treatment failed and I headed in to a liver biopsy that showed the cancer had mutated into Triple Negative, the deadliest kind. We are beyond grateful for the risk and the result. This is why it is so important to fund MBC research, so clinical trials like this can reach more women. It is so sad that we are so often left behind to die.
With that being said Metavivor.org has set up a web page exclusively for me so that all future donations in my name will be counted there and kept track of. To celebrate this great news, I would love it if everyone went to my page and donated $5 today. It is beyond exciting. To donate you can copy and paste the following into your browser and viola! It will take you there:
Moving on to other no less important things.
Although this is in no way a political blog, I feel like I should say something about the recent election. I was deeply troubled by the outcome. I was taken off guard by the meanness and disregard for women, the LGBTQ community and religious and ethnic minorities. No, it is not open house to abandon our most disenfranchised citizens, especially kids, who need to be valued and loved. I want my kids to know that human rights are unequivocal and a woman’s body is hers, and hers alone. I hope the president-elect finds a voice in this mess to put us all back together.
I truly believe it is the responsibility of teachers, coaches and parents–the people who kids spend the most time with, to model appropriate behavior. That means to teach our kids inclusiveness and kindness, to stand up to injustice and bullying. If we don’t, we are going to have to bear the bitter consequences of hate and intolerance. We are not on our own out here in the dark. Together we can shine a light and root out racism and bigotry, sexism and discrimination and make sure every kid has a seat at the lunch table.
“Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.”
– Martin Luther King Jr.
Having said all that I need to add that my blog is a safe and inclusive place. Everyone is welcome here. Why? One out of 8 women (and men) will develop breast cancer and 30% of those will go on to be metastatic, stage IV. The thing is, cancer knows no boundaries–it crosses all lines and is an equal opportunity intruder. It’s an all-inclusive disease that does not care what color you are, what your religion is or who you love. Given its epidemic status, it hard to find someone who has not been affected by cancer—children, mothers, co-workers, friends, neighbors. In the cancer paradigm, we are all in this together.
Recently I co-led a cancer support group on the topic of coping with cancer and the unknown. A woman in the group said she relies deeply on her faith and her church. I was struck by that in the sense that I am not religious at all and kinda forgot that it is so important in many people’s lives. Just because I am not religious does not make the practice of religion by others any less valid. Others in the group said they coped by being more empathic and by living more in the moment, more able to appreciate the little things. We all cope differently, yet the same, and we all need to be in community, together.
Okay, enough philosophizing. How about them Cubs?
Head coconut and I just returned from our big adventure to Aruba. It was really lovely. Hot weather, balmy breezes and warm water. Our first night there we dined at a local beach restaurant and my favorite waitress, Annelotte, greeted us by telling me I looked much healthier than last time! She surprised us with a crazy dessert lit with sparklers that said to celebrate life. That’s the spirit! Coconut and I mostly laid on the beach and swam with naps and walks mixed in. We ate fish on the pier and took the kuku kanuka bus—after dinner and the first bar stop we decided to ditch out and take a cab back to the hotel. We are such party animals! We snorkeled on a particularly rough day that Kelsey found more challenging than me, just sayin. The recent hurricane in Aruba created a sand ledge a few feet into the water with a strong current that made getting into and out of the water very challenging for me. Kelsey had to hold my hands and kind of pull me over before the water knocked me off balance. One day I really struggled to get out of the water and Kelsey, with one arm around my waist and holding my other hand, fell over with me. As she stood back up she was yelling at me to use my legs. Really? If I could use my legs I would have. We were laughing pretty hard as we tumbled onto the beach and into our loungers. Kelsey said “you do know that everyone here thinks we are the drunkest couple on the beach?” At least the beach waiter, Jorge, thought we were funny and rewarded us with mango smoothies.
About a month ago Kelsey was visiting us and said that she didn’t think I was so handicapped anymore. After this little trip she is now fully aware, lol! Guess you gotta spend 24 hours with me to see all the shenanigans I get into.
At the airport in Aruba the Jet Blue agent asked me if I came there a lot. I told her I had been there in August and she said she remembered me. Hard to miss the skinny, wobbly lady with a marine style haircut, lol. Hey peeps, spread sunshine and light wherever you go, people remember.
On Sunday a group of my old college buddies visited for lunch and a walk around campus (Stonehill College). So fun to reminisce (a word I thought I would never use) about college and all the crazy things that happened and people we remembered—a great walk down memory lane, particularly since my memory is not so hot these days. Good to know that across 40 years these are still the same warm, funny, people I first fell in love with back then. I love you all!
See ya next time, sometime in this life,
Very Happy Barbara, Blanket, Kelsey RN and Lasagna Bridget—–Yahoo!
Blue is definitely not my color today!