Dying for a Cure

I have now become a representative of the two things most people fear more than anything: a diagnosis of terminal cancer and a horrendous accident at home that resulted in a traumatic brain injury! Yippee, what street cred I have!

In my last blog post I wrote about my medflight and subsequent ICU stay (yay, another first, a helicopter ride!). I have gotten some of my mojo back as I recover, thankfully, at home with Blanket and the coconuts. One minute Er Nurse Kelsey is telling me to take Tylenol for my head aches instead of Dilaudid, the next she is warning me about taking too much and injuring my liver! Good times.

Back to the ICU–I think they were impressed by my ability to make complicated jokes despite my precarious state and also used that to evaluate my cognitive status. For example, my nurse needed to wheel me to a CT and enlisted another nurse whom she introduced as Becky. As they transferred me onto the CT table I asked if “she was Becky with the good hair?” She looked pretty startled before she laughingly said yes. Later, in the morning, when rounds arrived, the head trauma doctor announced I was the least sick patient in the ICU. I looked up from the cardboard bin I was vomiting in and said “you mean for someone with stage iv cancer?” which took him completely off guard.

Anyway enough about that. I am cognitively back to base line and physically banged up but recovering. Work and a trip to Cancun with little coconut have been canceled. More time at the library for me and blanket.

What have I been up to prior to all that? Well, Blanket and I attended a Living Beyond Breast Cancer metastatic breast cancer conference in Philadelphia–it was awesome–and participated in our second public protest of the lack of funding for research for MBC and the scandalous 113 people who die everyday of this disease. I also live streamed about the MBC Project with the girls from Broad at MIT. Social activism is about all we got. The video Tim made of some of this is at the bottom if you are interested (you should be!) 

 

 

 

Following that I flew to Greensboro, NC for a project produced by Metavivor and Eisai. Twelve MBC patients have been chosen, over 4 weekends, to tell their stories and be photographed and videotaped for #thisismbc. We each had individual photographs, directed by Beth Fairchild, head genius and Metavivor president. For mine, they flew Bridget in to be photographed with me. The point is to show how different we all are and to put a personal face on MBC when the project is launched in December at the San Antonio Breast Cancer Symposium–the big one for physicians who really need to see us as real people. We also got to do lots of fun things like massages and groom (mostly) and ride therapy horses. It was a once in a lifetime week with special people who I fell in love with and laughed so hard it hurt. Unbelievable. Love you Erin, Hallie and Allison.

The other exciting event in my life is that I participated in the second Metaribbon challenge to raise money for Metavivor–no surprise there. Thanks to my generous friends, I mean GENEROUS, I came in 4th and won a one week trip to Colorado, a place I have been dying (no pun intended) to visit since Tim’s ski bum days in Aspen before he met me. We booked this to coincide with his birthday in June to allow us lots of time before the wedding in August. Damn it if I wasn’t asked today to speak at a huge researcher-patient conference in Tampa, all expenses paid, the same week. Oh well, I can’t complain but I am bummed to miss this opportunity in a place I am more than familiar with since my parents lived there for many years.

Also, they are writing a story about me in the next issue of the Dana Farber quarterly magazine about immunotherapy and I just reviewed the abstract of a paper DFCI is writing about me for the Journal of Genetic Medicine. Apparently I have an unusual genetic mutation, found after my disastrous experience with Pembro, that may have made me susceptible to the adverse, hyper-inflammatory response I developed that landed me in the ICU in a coma and 2 months in the hospital–see, I’m not all fun and games. Perhaps that will help others considering this option.

So that’s about it–I am still trying to make my life count in the search for a cure or a way to make this disease chronic, not terminal. Retirement has served me well, both in dealing with my illness and providing me the time and energy to pursue this stuff and advocate for more research.

I am after all, still me. 

Love from the circus xoxo