Up, Down Sideways and (finally) Up

I am exhausted. For the last month I have been on a rollercoaster not qualifying for two clinical trials. The first clinical trial I did not qualify for was because I did not have enough cancer. The second clinical trial gave me the same reason.

On Monday, I was in the dentist chair when my phone rang with a UCSF phone number. I knew that it was about this possible new drug so I insisted, “Can you take out the suction devices so I can take the phone call!?” It was hilarious.

So there I was–after a month of waiting– sitting in the dentist chair when I finally found out that I had finally passed the right test! There was an excellent drug called Truqab. Starting Friday, I will be on this new drug. This is a fantastic drug that my insurance company supports. It is one of the new targeted therapies that focus on killing the cells where I have mutations. It is an effective and perfect drug for me. (ie, my hair will apparently grow back.)

In between all of this, I have had CT scans and 2 MRI’s. MRI’s are really hard for me because I am so very very claustrophobic. Breathing and listening to music only gets me so far. Meanwhile Steve has been steady and at my side. Driving me everywhere and constant emotional support. I’m relieved but I have to admit I am not completely excited. It took so long and so much energy to figure this out. I also haven’t been sleeping.

That is why I am excited about this weekend: Hardly Strictly Bluegrass! A weekend of music and fun in Golden Gate Park. I’ve been to almost every single festival. It feels like I have friends and family there. And good news, Oliver and Benjamin are coming into town. Caire is in Berlin, so obviously she won't be coming. I’m excited to see Molly Tuttle, but mostly excited to hang out at the Banjo stage.

My mother used to perform with her band, Nancy and the Lamb Chops and debuted her song ”Don’t Sweat the Small Stuff” which to her was a realistic assessment of life: That life will throw you obstacles but you might as well not freak out about it–especially the small stuff! I try to remember her words but I’m not sure I’m very good at it. I’ve been thinking about my mother so much lately. She would be so good at helping me navigate all of this medical stuff. I love you and miss you, Mom.

Thank you, my friends and family, for being there for me. 

I hope to see you at HSB.

Lots of love,

Jessica