The cancer mutates and outsmarts the drugs, and we throw a curveball to the cancer. In fact this time we will also radiate the hell out of it so it’s more of a firecracker curveball bomb approach. Here’s where we are:
despite me feeling good and having mostly good energy, the CT scan showed a lesion IN my cerebellum and extensive new lesions in my cervical spine (neck). The jaw pain, as I have suggested all along, is from a small tumor pressing on the mandibal nerve. This sounds pretty daunting and crappy. But that said, Rugo thinks it is very treatable and is very calm. She is not telling me to straighten out my will! So I am following her lead and staying very calm and zen. Of course it sucks. This med gave me my body back and gave me 10 vibrant months, but now it is time for a new drug. The good news is that because I’ve been listening to my body we are catching this before it becomes debilitating. Rugo and the radiologist (patty Snead who I highly respect) will plan radiation with a gamma or cyber knife (thank god this is just a term and not a knife!!!) which allows for highly focused treatment. Ah…thank you because as much as I love milkshakes, tapioca, and jello, I don’t want to lose my teeth! I will have a series of MRI s Wednesday afternoon which will give us more clarity and help guide the radiation plan. I am mentally preparing for the potential reality of additional lesions, which again we will tackle both systemically (xeloda crosses the blood brain barrier) and with focused radiation. I will update you when I know more next week. I told Bebe to make a super hero label for the new med because really it does sound like something Wonder Woman would take. Rugo is encouraged that I’m asymptomatic in terms of the brain and I’m proud that I’m listening to my body and that we caught this early. In the meantime if I’m forgetful I will just blame it on the cancer!
I started working with a serious and awesome editor, Alan Rinzler, and am back to square one on my book. But that is ok. I’m always up for a challenge. I’m still singing on Thursday at Neck of the Woods 8-10pm because fuck the cancer.
Onward and onward. I expect my survival to be a series of drugs and trials as medicine evolves. I will endure anything and any pain to stay here with my family and all of my wonderful friends. This certainly wasn’t the life I anticipated, but look at the creativity that cancer has brought to my life. The highlight of last week for me was teaching We Can Do It to the Burkes 3rd graders. They were so cute. Totally attentive and asking questions, eager to hear more music. Made me so proud. I hope to keep bringing you more songs and I hope to write a worthy book.
The kids are taking it well, and Creighton is being a fantastic help all around. I want only their happiness and sometimes feel terrible that I bring any of this burden to their beautiful little lives.