Snow White

 

Well after that last interruption we can resume regular programming. Cancer still sucks 2 weeks after learning my chemo failed to stop the progression. I went from 3 tumors in my liver to 7. I am officially naming them after the seven dwarfs. I especially hope Sleepy takes charge and puts them all back to bed. As for the annoying tumor under my right kidney that woke back up–I am naming him Freddie The Kidney Killer after Freddie Krueger.

I like naming things and it has recently been brought to my attention that Tim/Blanket/Ladybug and the coconuts have names but my brother Shawn and his wife, Diana, do not. After some, okay very little, mulling, I have decided to name them the Limes. Why? Who doesn’t love key lime pie with a graham cracker crust or a gin and tonic on a blistering hot day on my deck (or a yacht club for that matter)?  I am pretty sure that Shawn and Diana are very relieved that the coconuts are too old for them to have to assume guardianship and financial responsibility for them in the case of our sudden demise. The Limes it is!

Put a lime in the coconut and drink ’em bot’ together
Put the lime in the coconut, then you’ll feel better.
Put the lime in the coconut, drink ’em both down,
Put the lime in your coconut, and call me in the morning

So….Tim Blanket and I had a fabulous holiday last Monday at Westport Vineyards. Indian Summer weather, wine tasting and gourmet cookies, sitting on an Adirondack chair over looking the vineyards. It was this opportune moment that Tim told me he would like to carry my ashes around with him. I asked if he meant in a little pocket watch sized thing? “No” he said, “I mean in a big container close to me.” Have NOT laughed that hard in a while.

I was anxious about Tuesday–Metastatic Breast Cancer Awareness Day and what that would be like for me. Turned out it was awesome. 1200 kids and teachers packed into the gym for a special MBC pep rally for me. I told you I love these crazy people, right? Channel 5 and the local newspaper covered it. The photographer hugged me goodbye. My social media and phone blew up later that night when the segment aired. Honestly, what I loved most about it was having an opportunity to educate a few more people about MBC–breast cancer that has traveled outside of the breast to distant organs and/or bones and is not curable–it is the only kind of breast cancer that kills.

 

On Friday my colleagues celebrated, no, they recognized MBC by wearing the “elephant in the pink room” tee shirts they had all purchased on Metavivor.org—awesomeness overflow!!!!! I love these people!!!!!!!!!!!!!!!!!

 

On Saturday Tim and I attended the National Metastatic Breast Cancer Conference which unbelievably happened to be at Dana Farber this year. I know, it doesn’t sound like a barrel of fun but it far exceeded our expectations. We learned a lot of new information and got to meet and talk with lots of women like me! I don’t personally know anyone with MBC that is still alive so this was very new to be with 200 women (and a few men) like me. We left with a lot of renewed hope. It isn’t over. For me. I think Tim got a lot out of the medical presentations since I am pretty well read up on the topic and he isn’t. He even went up and spoke with the head guru of the whole breast cancer department at DCFI to ask a few questions. It was good. Once again we are reminded of the importance of community in all aspects of our lives and that we are not alone in the dark. People traveled from all over the nation and Europe to be there and the medical community gave their time freely. I introduced myself to the president of the MBC Network and told her that we had donated $17,000 from a fund-raiser in August. She immediately teared up and hugged me, saying they were able to award 2 grants with that money. (What is with all the hugging?)

Saturday night we dined in style at a Tapas restaurant with the coconuts to celebrate my birthday which is actually tomorrow. I tried octopus for the first and last time, like ever.  They of course, went overboard in the gift department. I am not complaining. They gave me a beautifully framed poem called The Oak Tree by Johnny Ray Ryder Jr, a candle that said “Home is Where Mom is”, a few framed quotes and a family photo for my office among other things.

 

 

 

 

So what next? Tuesday morning I am reporting for duty at 7:30 AM at Cancer House for 8 appointments following an 8 hour fast. I am having a bone scan, CT scan, blood work, lung  tests, an EKG, time with both Dr. Rachel and the clinical trial nurse to gather baseline data about my disease as I get inducted into the Sandpiper clinical trial. Why a clinical trial? Because only 5% of cancer patients in the US participate in clinical trials that may not help me but may help researchers figure out a cure or a treatment to make this a chronic rather than a fatal disease. I am doing it for my kids and your kids. Why does my estrogen receptor positive cancer become chemo resistant? Either the ER+ receptor itself develops a mutation or proteins, like CD4/6 or P134K, in the tumor cells, can compensate and bypass the estrogen receptor. Only clinical trials will unlock those mysteries.

On a sour note I learned on Saturday from my new friends that the chemo I am going to start taking can cause rapid weight gain, like overnight. That totally pisses me off. I work out 3 times a week with a personal trainer whether I feel like it or not and that is not cool. At all.

Another panelist at the conference said she gets out of bed every morning, plants her feet on the floor, checks to see if she is in the obituary page, if not, she goes to work. Yeah, that is me.

“When people remember me I want them to do so with a smile. I want the bad things that have happened to me to be a footnote in a really thick book full of adventure, light, laughter and love”. Trip Griffith, fellow blogger“In the depth of winter, I finally learned that within me there lay an invincible summer.” ― Albert Camus

See you next time,

Love from the circus❤️🎡🎠🎢

My song: If I Die Young by The Band Perry

If I die young bury me in satin
lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song
Uh oh uh oh
Lord, make me a rainbow shine down on my mother
She’ll know I’m safe with you when she stands under my colors
Oooh and life ain’t always what you think it ought to be noo
Ain’t even gray but she buries her baby
The sharp knife of a short life
Well I’ve had just enough time

If I die young bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song
The sharp knife of a short life
Well I’ve had just enough time

I’ll be wearing white when I come into your kingdom
I’m as clean as the ring on my little cold finger
I’ve never known the lovin’ of a man
But it sure felt nice when he was holdin’ my hand
Theres a boy here in town says he’ll love me forever
Who would’ve thought that forever could be severed by
The sharp knife of a short life
Well I’ve had just enough time

So put on your best boys and I’ll wear my pearls
What I never did is done
A penny for my thoughts Oh no I’ll sell them for a dollar
They’re worth so much more after I’m a goner
And then maybe then you’ll hear the words I’ve been singin’
Funny when you’re dead how people start listenin’

If I die young bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song
Uh oh the ballad of a dove
Go with peace and love
Gather up your tears keep ‘em in your pocket
Save them for a time when your really gonna need them Oh
The sharp knife of a short life
Well I’ve had just enough time
So put on your best boys and I’ll wear my pearls