Triple XXX/ History

Hello, it’s me (not Adele). I had a rough patch last week as many of you read about in my blog. I almost didn’t post but asked Tim to preview it for me–I don’t like sharing the darkness. Tim said “you have to post this–it’s your truth about what you are going through and you can’t be funny all of the time.”

Well, to reassure you, I have gotten my head back in the game after a lot of self-reflection and lots of processing. My warrior status was down for a bit but it is definitely back up to speed and I am ready to kick the door in on the next phase.

How did that come about? Time to process, a 2 hour discussion with Tim and Dr. Rachel and your support. Many of you commented on my loneliness. It is lonely at times to be the only one in the room with terminal cancer, but most of the time, I think about all of you and how much you have rallied to help me and my family get through this–it pulls me back from the brink. Also, I had an epiphany of sorts—-I feel physically okay at this moment and I can still do most of the things I always have, and I know I am loved. There is a lot of happiness and laughter and silliness in my daily life. Why focus on the distant horizon and start getting ready to die when I feel so alive? I don’t want to squander a minute of my life on the things I cannot control.

Medical news–I now have  triple negative breast cancer and the scan I had last week showed progression or growth in one of the several tumors in my liver. This is serious business. The two lines of chemo meds I have been on the last 10 months, except for Ibrance, were targeting my estrogen receptors and essentially doing nothing as I am no longer estrogen positive. In a way it is as if I haven’t had any treatment. Cancer is a fickle, demanding bitch. The good news is that considering I wasn’t really getting any treatment, the cancer did not go berserk and spread out of control like it could have.

Now what? There are no real targeted therapies for triple negative so I have to move on to the big guns–IV chemo infusions that will roll out a bunch of nasty side effects as it tries to stop cell division –that means it kills healthy fast dividing cells, like your hair and the lining of your mouth, as well as cancer cells. The twist is that I am going into a clinical trial (finally) that will also give me immunotherapy—-all the rage in cancer world. Because it is a phase 2 trial I will get both medications, no placebo’s. The immunotherapy tries to stimulate my own antibodies to attack the cancer cells. In this trial I will be getting Eribulin (standard chemo) and Pembrolizumab, also known as Keytruda. It was piloted on metastatic melanoma and lung cancer and is the drug President  Jimmy Carter had so much success with.  A side bar about that– the press jumped on his announcement that the Keytruda had shrunk his brain mets and declared him cancer free. Not so fast—he is not cancer free—he is NED–no evidence of disease or more aptly, the malignancy is too small to be detected by modern imaging. The cancer is asleep which is awesome.

Everyone with metastatic cancer dreams of “dancing with NED.” Short of that we want to dance with the “stable boy”–detectable yet stable disease viewed on imaging when compared to the last scan. So far I am neither. I expected to go longer on the subtle, gentle chemotherapies that give good quality of life before arriving here.  However, I realize it is time to get serious and bring in the bazookas cuz it ain’t working! There is some element of relief in that.

Yesterday I spent at Dana Farber on my own having baseline blood work, an EKG, a brain Cat Scan and a bone scan required for the clinical trial. It is so quiet and peaceful at Cancer House–everyone humming along, whispered conversations, loud translators,  friendly guides. I had to cross the bridge between buildings several times and pass the Jimmy Fund Clinic. I saw several young dads clutching sick babies and attempting to distract them from their discomfort. My stuff pales in comparison–wake up call Barb!  Also I discovered the hidden stash of snacks in the back room of nuclear medicine, bonus!  We cancer peeps like to snack, a lot, because bigger meals are hard and we are often coming off a fast. Signed a million documents, fasted some more, knitted and waited. All of my tests were normal–no cancer in my brain or bones.

Next Wednesday I begin chemotherapy infusions and return within 24 hours for blood work. Every side effect is listed but the most likely and worrisome are nausea, itching,  hair loss (slowly this time–she offered me a new wig prescription–I declined), loss of appetite, fever and a cough. I can do it. Disheartening is that all  of this is aimed at extending life by months not years. There is no cure.

Moving on from that I want to say that we did have a nice Christmas–family was present and accounted for, the limes and coconuts were here, laughter abounded, wine flowed and Tim made his sea salt caramel martinis. I took Tim, as part of his Christmas gift, to see the play Once–it was fabulous. Lunch with Arleen, gym time and knitting classes followed by a lovely New Year’s Eve with Bill and Carla. After dinner Bill had a slide show of our relationship over the last 34 years and all the crazy, fun stuff we have done. I loved, especially the 30-year-old photos of Carla and me–so young and adorable–hiking, sailing, skiing. It is nice to look back at all we have shared and the clothes–oh my! My younger self looked so much like Kelsey and Bridget it was breath-taking–a snapshot of what was yet to come. I loved the photo of me and Carla lounging like cats on top of Iron Mountain on a beautiful October day, another of us laughing on a porch of an abandoned house on Plum Island and lastly, sitting in the snow under a huge white birch tree on a cross-country ski trip. Those kinds of memories and relationships are what make a life meaningful and beautiful. Shared history is so much  more important than material things and accumulated wealth. So yes, I was looking back over my shoulder at a rich, fulfilling life. I just want more of it, dammit!

 

Lastly, Kelsey has had a hard time of it lately with the diagnosis of lupus. She had to stay out of work for a month until the medication kicked in and I am thrilled to say she returned home and to work this week. She is happily engaged in knitting, yoga, journaling and all of the things she loves especially her dog.

Because we have been so focused on Kelsey, Bridget has not gotten as much attention. She loves One Direction despite being in her 20’s. In honor of her, my song choice this week is 1D’s History–seems fitting given all the ringing out of the old and bringing in of the new and thinking about our shared histories. At least I now know that 2015 will not be on the end of my dash on my tombstone! Let’s get back to fighting in 2016 and sharing love, laughter and kindness. Happy New Year!

 

Love, Barbara xoxo