I write to you from the comfort of my new studio apartment in San Francisco a couple blocks from the Balboa Theater and walking distance from Golden Gate Park and Ocean beach. It’s so quiet that I can hear the distant fog horns and the occasional gull. I’m thinking of this as my recuperation nest for the next several months. I have surgery number three scheduled for September 30, followed by cyberknife radiation and then my great new oncologist and I will discuss the wisdom of adding chemotherapy.

I found my apartment and signed the lease within three days. I immediately felt at home here. This place just fits me and I  realized this is something I’ve been wanting for a long time.   I haven’t lived alone since I was in college and moved out of the dorms. It feels like I’ve come full circle in some way. I feel some of the same excitement I felt then when my life was opening before me with so many possibilities. I’m facing very different possibilities now but I retain the sense of new beginnings  I signed the lease the same day my treatment team proposed surgery number three to me.

The surgery proposed will be more extensive than the first two and will involve sacrificing my S1 nerve root as well as a portion of the bone from my sacrum. I will need to wear an orthotic device on my left foot and ankle to walk and its possible that I will have some chronic pain after the surgery. During the surgery, if it is safe and feasible, an interventional radiologist will install small saline bags in front of my sacrum to move my small bowel out of the way and protect it from radiation exposure during my post-operative cyberknife treatment.  How much function and bodily integrity am I willing to risk for a chance at disease free survival? The phrase that came to me to describe this treatment is high- tech medieval.

When I first heard the proposal I had no idea how or what I would decide, but within three days I made my decision to go with aggressive surgery.  My new apartment was the first place I looked at, I almost didn’t go see it and I didn’t really know it was right for me until I was moving in. But the ease of this process helped me trust that my intuition is working on my behalf behind the scenes all the time even in my medical journey where nothing has been smooth or comprehensible.

Several weeks ago I set up an appointment with my former oncologist, just to update him on my current situation and get his perspective. It happened to be two days after the Call. He sat across from me and listened to my account of my medical odyssey, ending with the new surgery proposal and the difficult decision I had to make. He leaned forward took my hands and looked me in the eyes and said. “Choose the surgery even if it means you will never walk again. Sarcoma is a bad actor and surgery is your best hope for a cure. If it is not controlled locally chemo and radiation won’t be able to keep up with it. You are resilient, strong and you bounce back better than anyone we know. I am so sorry you have to go through this my friend.”

His blunt appraisal resonated with something in me. I was stunned but I also noticed I felt lighter after I left his office. The next day a nurse practitioner and homeopath I have known for years, shared some advice her son was given in driving school. “There are many tips and tricks to help you drive defensively and avoid accidents but if you find yourself in a very bad situation, here is your best chance for survival:  Look ahead for any available light, orient yourself towards it, and gun it.” After I left her office, while I was eating lunch, I felt something shift and settle within me. That afternoon, I  wrote the following message to my surgeon and treatment team.
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I would like to proceed with the surgery and radiation treatments you  have proposed as soon as you think it is feasible. I believe I have the best chance of local control and long-term survival if the tumor can be completely removed.  The nerve pain that developed after my second surgery has stabilized but not  improved. Your recommendation, the MRI results, and a conversation with the oncologist who treated me in 2006, have convinced me that delaying surgery is not in my best interest.

It was important for me to write this message to communicate my decision to my doctors and to solidify it for myself. There is no right answer. There are as many valid approaches to treatment as there are individuals who have to make these decisions.  It’s not that I don’t have doubts and I’m certainly daunted at the prospect of a long uncertain recovery. It’s just that I feel more settled and trusting of my doctors and myself.

It’s great to have this move to occupy and distract before surgery. I also have a daily walking Chi Kung practice for the last three plus years and which has grounded me in ways that are starting to become apparent. I still have so much to learn and practice but I’m so glad I have this foundation when I am overcome by the weirdness of it all.