Dr. Williams had dropped me into the schedule of Dr. Allan Chen, a radio-oncologist. You get two experts trying to sustain your life: A radio-oncolgist who does the burn, then an oncologist who does the chemo and the longer-term plan. The oncologist who is not only one’s general guide, but also in charge of what drugs may work. The one we wanted was on vacation this week and there was only a slot open earlier by 2 days. So it seemed worth it to wait for Dr. Adams, the head of the department for Monday the 3rd.
This week (I think it was Tuesday, the world is a blur), Radio-Oncology had me go in to do the initial review of my file and a sort of…orientation of the program. Thanks to Shannon the baby-sitter, she took Tomás and her sweetie Mateo-potato while my mom came in with me so I could actually give Steve the morning off of being my escort.
In meeting with Dr. Chen, I was…impressed. He is both an MD and has a PhD, so was also great at showing us the evidence. He walked my mother and I through the MRI scans, and pointed out where the tumor had been, then the cavity it had left behind (I am still unsure as to when and how my brain is resettling. Need to ask someone eventually. Is there now a hole of information that is making me not able to recognize homonyms?). He remarked, as all have, that the surgery was particularly successful. He gave us the worst-case numbers, as he said he had to, but also expressed hope at the uniqueness of my situation. The Giant Cell, my age, and the success of the surgery all played into a higher hope of survival. He also remarked on his own experience at the National Cancer Institute, they had seen a case as mine for 20 years and it was still the one the interns got to be awed by every year. (He did not share that until I gave him my personality disclaimer: tell me the worst, and expect to beat it).
So the radiation will be every week day for 6 weeks or 30 sessions. Probably starting next Wednesday, though we have to wait for the official ok from Dr. Adams, in Oncology. However, Dr. Chen was going forward with calculations and plans as to maximize time. He also remarked that he thought I would not have the side effects except the fatigue. And he said if I could get a 15-30 min nap in, it would probably aleiviate it. I commented that I was thrilled to stop the steroids for that sake. Then he gave me my list of neuro-development to ensure the brain swelling had stopped, or else I was back on the steroids. I think as long as the vocab and such stay where they are, I am ok as far as swelling goes.
Dr. Chen spent over an hour with us. He was quietly paged three times in the session. A nurse asked me how I got on his panel. (I think he is considered the best). It turns out minutes after my appt with Dr. Williams on the 24th, a patient had decided to switch locales and Dr. Chen had just transferred the patient to another site. Then Williams dropped me into Dr. Chen’s panel. Dr. Chen wondered how I got in there so fast.
From there, Dr. Chen said they had another cancellation for the masking, so mom took over Lemon (so Shan could actually go get Paco’s fiancée from summer camp) and I went into the masking area to get the marks done for treatment next week. Terri, one of the technicians, also gave me a quick tour. It is actually a very nice facility. There is an exam hall and a treatment hall. The treatment hall comes with dressing rooms and such to change in prep and the staff is all so upbeat that I can see it stopping you from getting too negative.
Then a great technician (seemingly Terri’s partner in crime) named Ben worked with Terri to take my mask. I was in the casting for about 20 minutes and I was fine (wanting hot mud and warm towels to relax further)…until Ben came up to me with a camera and took a photo. I swear I thought I was dressed up with my cousin Alan to make a show. I started cracking up in the mask and Ben could not tell if I was choking or not. I had to put my hand on his arm and give him the thumbs up. I warned him not to crack me up anymore. He asked why my attitude was so good and I explained my friends and particular my cousins, my family and my in-laws. He said very sweetly and earnestly, I was lucky. His parents had died when he was young, he was raised by his grandparents who were now gone. Ben seems like a nice guy, full of joy. And his reminder to me of how fortunate I am was completely appropriate.
From there I met with the nurse who I had a good conversation with about my head and skin issues (she told me how I can swim, it involves using Aquaphor to create a seal in the swim cap. Will try next week). And we discussed the hair issue and not wanting to look like a cat with mange.
Then I met with the dietician who…get this…had lived in Buenos Aires! Anyway, she pointed out something obvious…not to overdo anti-oxidents during radiation. Apparently, the idea is to not make the cancer cells stronger. You want them to be as weak as possible so the burn. No prenatal vitamins for the month (I have old bottles to use up) and no real supplements. It makes sense, but I had needed it pointed out. I asked her about mercury, now that after 6 years of being pregnant, nursing or trying to be pregnant, I was in my own zone. She said, “go for it.” Ah, tuna sandwiches all the time. And mackerel sushi. Gari Saba Make. My roll.
Thanks to my mom watching my loud baby, it was a 4-hour effective orientation to radiation. From there, I went to Trader Joe’s for the first time since leaving the hospital. I bought too much food and some sake. Had to celebrate the beginning of the fight.