I have been mulling over my reaction to the Oliver Ames High School “Class of 2016” decision to dedicate their yearbook to me. I really can’t find the right words–I am incredibly honored, moved, touched—-but mostly, I feel very loved. It is inspiring that a group of kids on the verge of adulthood would come up with this on their own and that they really “get” the whole metastatic breast cancer thing, and in fact, embrace it. I know now that I have educated a pretty big, awesome group of kids about something so many adults don’t even know about or understand–metastatic breast cancer is the only kind of breast cancer that kills and it is fatal. This is important as it comes on the edge of PinkOctober and the pinkwashing and glossing over of something so many people are unaware of. Please think before you buy something pink because you think it helps fund research. It probably doesn’t. Send a dollar to Metavivor.org and you will have an impact. Better still, take the 4x4x4 challenge and donate $4 to Metavivor and we can rule the world people!!!!!!!!!!!!!!!Forget about the pink crap. Just sayin.
In the spirit of that, October 13th is Metastatic Breast Cancer Awareness Day–yup, we get one whole day of awareness. What!? My metster friends are planning a big die-in and march in D.C. from the Monument to Congress to campaign our legislators for more research funding for MBC. I cannot attend but I have been invited to speak at a pharmaceutical company that day in Cambridge. All of these activities, big and small, matter. Metavivor.org, my beloved charity, blogged about me this month with the headline “woman benefits from research as she helps to fund more”. Pretty awesome stuff except………..
That was interrupted yesterday by a trip to my Norwegian oncology-endocrinologist. Apparently my pituitary is triggering most hormones in my adrenal glands except the big one, cortisol. This is a peculiar finding–they don’t know if it is an artifact of the pembro or something else amiss. He has decided to change my steroids to one that metabolizes quickly and will be out of my system in the evening to see if going without the steroid overnight will trigger something. In a normal person cortisol is lowest in the evening and highest in the morning and I of course, am showing no cortisol in the morning. Probably why I have so much difficulty getting up in the morning! Tim and I were somewhat alarmed at this change of meds—if ain’t broke (at the moment), why fool around? We cancer peeps are superstitious. Potential side effects, which I have already experienced in the past, include fainting and vomiting. Remember that little incident at Back Eddies? The doc relented and said it was okay to wait to switch meds until after I return from California the first week of October. However, he said I now have to wear a medical alert bracelet at all times because I would need IV steroids in the event of an accident. I sorta knew that part was coming. I was okay with some new bling until I got home and priced the bracelets–mama mia! I wanted something simple, water proof and not obvious—they were not cheap, just sayin!
Then he dropped a bombshell—e-mailing me later that evening that he got my latest lab results and my cortisol was so low, that I need a brain MRI. Really? And things were going so well. In a panic I e-mailed Doc Rachel and she reassured me she thought my brain would look great. WTF?
Moving on from that……Head coconut mentioned that she didn’t think I was so handicapped anymore while we sitting in the backyard. Tim and I abruptly started laughing. Of course I look good when I am sitting on the couch , talking, or being driven somewhere. It’s the everyday tasks that get me—being unable to open cans and jars, shaking in unfamiliar or unsafe surroundings, being unable to feel the bottom of my feet and unable to walk on wet or uneven surfaces, unable to cook or carry things up and down stairs….it takes me 20 minutes to make the bed and twice as long to do most things……I’m not complaining but disabilities aren’t always obvious. However, I prefer this to the alternative. I remind peeps that I have been officially diagnosed with “gait instability” as I wobble off. But its great to be alive!!!!! And I have helpers!!!!!
When we were young things seemed so much simpler, especially without social media and the pressure to be everywhere at once. I loved my little apartment in Brighton, my (paid for) used Chevy Malibu and my monthly rent and tuition payment. That was pretty much it. Tim and I would go to Harvard Square on Friday nights to a BYOB Chinese restaurant and split a bottle of wine and fall asleep on the couch watching Miami Vice. I would spend all day Saturday studying in a back bedroom. Graduate school!! Scintillating!!
When my mom was diagnosed with colon cancer when I was 26 it didn’t really phase me much. She was 62, had surgery and that was it. She never talked about it and I have no idea what she thought at the time. She lived until she was 90. Both my parents were very private and never talked about things like cancer with us. My coconuts have had to learn a lot at a young age, never mind my relentless openness. September 30th is #breast cancer reality day# when people get to share the truth about what cancer has done to them. I’m sure my kids could contribute plenty.
So what next? A trip to Big Sur and Sonoma with Bill and Carla, a brain MRI (obviously), and then Aruba if I live that long, just kidding. I am already making plans for fun with Kelsey in Aruba. I am determined to make memories with my loved ones even if it kills me!!!!
Last week we had a fantastic evening with Kris and Jane at the Adele concert–cannot say enough about how awesome Adele was. Fabulous doesn’t cover it. The weekend before, family visited from Michigan–don’t get to see them enough but they will be back for Christmas! Paula K. dropt off a huge Italian feast, Claire Cronin brought me strawberries and special holy water from a pilgrimage in Turkey, my next door neighbor sent over the last of the summer tomatoes and peppers, and we rounded things out with a birthday celebration for Elizabeth, although this year I wasn’t strong enough to jump in the pool! Gee, too bad! This, of course, was done with lots of sleeping and naps.
I plan to continue to be present and to live my life with intention, no matter how hard it gets–you can too!! Lets do it!
Barbara and the Circus