Our “science fiction radiation vacation”; that is how my wife characterized our very short trip to see the ProCure proton therapy centre in Seattle last weekend. It was short, with a whole lot of driving; 14 out of the 36 hours in the car. We arrived just as the Cowboys defeated the Seahawks, so we walked around Pike Place Market and the piers with a lot of disappointed Seahawks fans and a very few jubilant Texans.
We stopped and toured SCCA House on our way into Seattle. This 80 room residence, owned and operated by the Seattle Cancer Care Alliance, has communal kitchens and laundry facilities, a small gym, meditation room, library and some common lounge areas. It is not very close to the radiation facility and it is quite expensive, however the idea of interacting with other cancer patients and being part of a community is very attractive. It is definitely an option if I can afford it.
I spent Monday at ProCure, meeting the intake and nursing staff and touring the facility. It has a gorgeous waiting room with a fireplace, reading area, comfy chairs and a coffee bar. The staff took very good care of Stella – setting her up to play Wii sword fighting and bringing her donuts. While she was occupied with games and sweets, the staff explained proton beam therapy and their process to Olivia and me.
After the introductory meetings, I met with Dr. Tseng who outlined my treatment plan and the challenges that we are going to encounter. It is not nearly as straightforward as I had anticipated. Dr. Tseng is awesome. She was easy to talk to, clearly understood my case and was prepared for the meeting. She had discussed it with colleagues at Mass Gen (where she had worked previously). She is familiar with chordoma through her work with Dr. Leibsch (who is the leading expert in chordoma research and treatment) and knowledgeable about pbt. I hit the jackpot with respect to a radiation oncologist.
We are not sure that I have any cancer cells left in my body, or where they are, so this is different than radiating a tumor. Chordomas are radiation resistant, so if it does grow back we would need to try to remove it surgically rather than radiate it, and it is going to be very difficult to operate around my current hardware, so at this stage we want to ensure that all the cancer cells are dead. We are going to radiate the site of the tumor and anything that might have been touched during surgery or where cancer cells might have been transferred. Apparently these cells like to adhere to metal so we are radiating the plates and screws as well as the spacer where my L5 vertebra was. One question we have concerns the sites where my drains were put in during surgery. They are quite high up (behind my kidneys) and radiating them will cause some kidney damage. Dr. Tseng is looking into the likelihood that they could have been compromised. If there is a chance that they were we will radiate them.
Dr. Tseng was very good at explaining the potential risks and side effects. There are a few side effects generally of pbt and there are others that are case specific. I will likely have some skin damage on my lower back, which I expected and is not a big deal. We also discussed the risks and potential short term side effects due to having to radiate the bowels and rectum and the potential longer term effects on these organs and my nerves (feet and legs). These are of much more concern. In addition we are weighing the risks of radiating my kidneys. There also may be some short term fatigue but apparently this is reduced if I am active, which I intend to be. Overall, these are much less than I would experience undergoing conventional radiation.
After the consultation, I had two CT scans, or verification simulations, to determine exactly where to radiate. Dr. Tseng is now working on a plan for target volumes and then physics and dosimetry can go to work. She is planning for 41 treatments at 73.3 Gy (Grays). If you are interested, I found some helpful information on radiation levels at http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation
If physics and dosimetry can finish quickly and then get the plan to machining (to build the aperture) I should be able to start the week of October 27th. If we start the 27th and radiate every weekday except US Thanksgiving I will be done on December 23rd – Merry Christmas! However it looks like the complexity of the physics, and the consultation around the drains/kidneys will push us back a few days, so I will probably finish the week after Christmas. That’s okay. I can’t rush it and Christmas in Seattle will be okay. We have enjoyed the holiday in Hawaii, and in Freshwater Beach, Australia, why not Seattle?
While the doctor and technicians figure out the radiation plan I am figuring out logistics of the trip, where to stay, what I can afford and waiting for the call early this week with an exact start date. I am staying positive, and am overwhelmed by the support and help that we have received from friends and family for my radiation visitation in Seattle.