Sailing

Hello again, it’s been awhile. Lots to celebrate and changes to adjust to as well as travel. But first, the really big news. My Pet Scan last week continues to show I am without any signs of active disease. I am NED!!!!!! 34 months going strong without treatment! A 3 month reprieve from Cancer World!

This is fantastic news and yet, I am not without medical problems which seem minor in the grand scheme of things. I have a small but persistent nodule in my lung that continues to be noted but has not changed. Apparently I have, or had,  a fracture in my sacrum that now shows scarring (healing). I don’t recall my butt hurting but what ever. Lastly, I had an ultrasound yesterday of my thyroid (they are very persistent in Cancer World) that shows I have a small nodule on my right thyroid that bears watching for now. My kidney functions were a little off since I only have one and need to be more intentional about water consumption. What I say to all this is hurray!!!!!!!! I can still go on with my life at full velocity!!! Dr. Rachel tells me that the medical paper that was written about me has finally been published and that a new immunotherapy is soon to be FDA approved for TNMBC. Exciting times. Thankful for my PD-L1 mutation!

What else is new? We have settled into our new house by the ocean and the little St. Joseph medal Tim planted seems to have worked! Our old house is under agreement and short of a financing problem, we should close in a few weeks. Last week we spent a lot of time emptying out the attic and sorting stuff, mostly boxes and boxes of pink baby clothes, wow. I could picture the coconuts in every outfit and trust me, there were a lot. Anything stained or yellowed was tossed and I managed to get it down to 2 boxes. The funniest item I found was Kelsey’s fifth grade yearbook with her husband pictured nearby! Head coconut and her husband finally head off on their honeymoon Sunday to Thailand. This will be the farthest we have ever been away from each other, yikes! I told her to go to Big Buddha Beach, light a candle and say prayers for me and all my metastatic peeps.

Here at our new house we look out at the ocean daily and feel surrounded by a feeling of peace and serenity. Despite the death grip of winter, the beauty in nature shines and every night we yell out to each other when sunset approaches so we can rush to our couch to watch the pageantry. We have a had a steady stream of visitors to enjoy this with us and of course, the kids.  Kelsey spent a few nights here escaping from Evan who was flu ridden.

Looking back at last year, all of our expeditions involved advocacy and fund-raising of some sort for Metavivor. I went to Philadelphia, North Carolina, Colorado, Washington DC and San Antonio. The work has been rewarding and many, maybe most of the time, fun. Little coconut has been with me for a lot of it, and there is always laughter.  I love the people, men and women, that I have become close to. In February we all head to NYC for Cancerland/Ana Ono/Metavivor’s NYC Fashion Week show (#notjustone) featuring all models walking the runway with metastatic breast cancer, including me. Damn a disease that brings so many people into your life that you might lose.

 

 

 

 

 

I can’t help but feel at a loss for all the women I know that have died in recent days or had progression, sometimes it feels like an avalanche of bad. It is hard to keep your own death at bay and go on while so many others are trying new treatments, or are out of options and entering hospice. My header photo this week and my song choice is for them. May they sail on…..

I am sailing
I am sailing
Home again
‘Cross the sea

I am sailing,
Stormy waters
To be near you,
To be free

I am flying,
I am flying
Like a bird
‘Cross the sky

I am flying,
Passing high clouds
To be with you,
To be free

Can you hear me, can you hear me
Through the dark night, far away
I am dying, forever crying
To be with you, who can say

We are sailing, we are sailing
Home again
‘Cross the sea
We are sailing