Baby

I know, I know, it’s been a long time……it’s really not deliberate, I’ve just been busy enjoying health and happiness, and most of all, the summer. Actually I feel quite guilty about not blogging, especially when someone taps me on the shoulder or gives me a nudge.  For me it’s like a term paper every time. I was always the girl rushing to slide my neatly typed work (on onion paper) under the professor’s door at midnight in the pre-digital age. My master procrastination skills are an art form!

Anyway, I continue to do well health wise despite learning I had 3 broken ribs on my last Pet Scan and a mysterious something on my thyroid to be biopsied at the end of September. I have a high pain tolerance evidently or I’m just really great at compartmentalizing my experiences mentally and physically. Others in my world are not doing so great and the death march continues on with losses weekly. Some days it’s hard to cope.

In April I was elected to the Board of Directors at Metavivor.  It comes at a time of colossal growth and great responsibility for the future direction of the organization. It’s been a steep learning curve but I am grateful for the gig as I feel an obligation to give back to so many who have helped me and may not be able to help in this way because of medical prohibitions. It involves weekly conferences and some travel but I find the work intrinsically interesting. In May I participated in a couples retreat sponsored by Eisai and Metavivor at the Jersey Shore by facilitating workshops on relationships. The chosen couples were photographed and videotaped as part of a new campaign and had down time to relax and break bread with everyone. Believe me you get to know people well in a short amount of time when you spend an intensive 3 days with them. It was wonderful in every way. I wish we could do more work along these lines because of the benefit I think each couple experienced. Then it was on to the University of NC at Chapel Hill for a patient-researcher engagement conference to collaborate on setting research priorities as more and more patient advocates are asked to sit at the table. How great is that?

Next week Tim and I fly to NJ to pick up and drive the Metavivor RV home to begin our tour of New England, bringing awareness and education to places the big cities often don’t reach, and of course, to meet patients where they are. If you see us please wave! Little coconut is having a Metavivor event at her shop in South Boston on Sept 12th and we will be there with the RV.

In the middle of all that fun we are going to another patient-researcher conference in Arizona. Tim is tagging along so we can stretch it into a mini-vacation in Sedona and the Grand Canyon. We haven’t been away since the disastrous trip to Breckenridge where I discovered I am not made to be that high above sea level. Lastly, we drive the RV to Washington DC for the Metavivor Stampede on Capital Hill and hand over the keys mid October on Metastatic Breast Cancer Awareness Day. Then it’s on to Minnesota for my buddie’s Metsquerade Ball followed by time off to relax and start working on the Metavivor blog and prepare to hunker down for winter.

So….that’s all the business stuff. How are you? All of my school friends are making the big adjustment to work this week. I salute you all from here on the beach. Last year was my first time not returning to school and it felt surreal. Now every day is Friday here.

Tim and I often pinch ourselves (and each other) and wonder how we got here after such a tumultuous trauma in our life. Making the decision to move away from home was terrifying to say the least but it just felt right. With the onset of summer we have met more and more neighbors and settled in to the rhythms of ocean life. Our clock now is a tide clock and the weather channel. It feels good to still have meaningful work to contribute but at a pace I can cope with that allows me to rest and sleep regularly. Friends and family have visited all summer and there has been lots of laughter, kids and dogs. My kids are always here in one or another. As little coconut likes to say “the outdoor shower is life!”

I have made no secret of my intense dislike of our current government and it’s policies. We watched a movie the other night about racial violence and I learned, after all these years what THUG LIFE really meant—the hate u give little infants f+*ks everyone. I couldn’t agree more. Children are taught to hate, they don’t learn that on their own. Let’s teach them about love and inclusion instead. That is my charge to all young parents and teachers.

As for me, I’m going to keep telling people my story to inspire hope and at the least, keep up my badass status. I share because so many women feel hopeless and helpless. We gotta do better.

Well it’s been an unusually rainy week trying to rush the last bits of summer. Today the sun is out and the wind is balmy. We agreed to take over the beach book cart and Tim is unpacking 6 bins of books in the shed starting with murder, very fitting. Amidst the ordinary details of our life the tender mercies are always about. Tim mumbling, the cats meowing, the tune from the ice cream truck calling little customers, and my brand new shiny cell phone transferring data. The kids arrive tomorrow. There is much to celebrate—birthdays this summer and Kelsey and Evan’s one year anniversary. This song is for them.

Go catch some sun and tender mercies. See you next time, sometime in this life.

Barbara