So Many Appointments

Hi everyone – 

Physically, I don’t feel that much different – I need a bit more sleep, my throat feels kind of “thick” with just a bit of difficulty talking sometimes. The hard part is yet to come. 

Emotionally, I’m coming to terms with what’s coming down the road. I’ve learned a ton in the past week, and all of the information has helped turned a big scary mystery into a big scary plan. But I no longer have “fear of the unknown.” I know it will be uncomfortable and then painful and I just have to be here for it. 

The number of appointments and scans involved in planning for cancer treatment is just ridiculous (but everything has a reason – no complaints). Trying to fit all of this into my work schedule has been a challenge, but work has been really supportive – no one is complaining that I’m missing half the time. I’m keeping a log of appointments I’ve had or that are coming:

Feb 11 – GP first appointment with throat concerns 
Feb 27 – ENT specialist who did the biopsy
March 4 – CT scan, Oakland
March 6 – Scan follow-up with head cancer surgeon
March 9 – Start diet/exercise/fasting for PET scan
March 10 – Blood panel
March 11 – PET scan with radioactive tracer to see whether there was further spread
March 12 – Video visit with oncology specialist
March 13 – Radiologist meeting – general info
March 14 – Medical leave arrangements mtg at work
March 18 – Audiologist – Radiation could affect my hearing
March 18 – Cancer dentist – radiation will affect my teeth
March 19 – Final more CT scan – the mapping/planning one (super detailed)
March 24 – Speech pathologist – like PT but for speed

I’ll have a start date after the mapping scan on March 19 – probably the 2nd week of April. From that point, I’ll have one 4-hour chemo session per week, which will wipe me out (exhaustion), and five 10-minute radiation treatments per week. The whole course lasts 7 weeks. Then I need a full month of recovery. The effects of radiation discomfort will actually continue for the first couple weeks of recovery. 

Then more scans and checkups for quite a while, tapering off over time. If after five years there are no further signs, I’ll be considered clear.

For the radiation, they’ll be making a mesh mask of my face. I’ll lay down, they’ll put the mask on my face, bolt the mask to a frame, and bolt the frame to the table. The target markings will be on the mask. That’s how they’ll keep radiation directed at precisely the right spots, and have a consistent reference from visit to visit.

I’m supposed to be trying to gain weight right now – if I lose more than 10% of body weight, I’ll have to go on a feeding tube they’ll implant in my abdomen. 

I have to see a special radiation dentist to prepare to deal with damage to teeth (which already aren’t great). And I have to meet a speech pathologist to minimize effects on my speech. 

I asked whether there was a possibility I could do some of it from my parents’ house at a different clinic and they said no – it’s important to have the same gear and the same care team for all sessions. I’m sorry. 

My medical leave at work – I’ll have job protection and stay on benefits for 3 months, but California SDI will pay 90% of my salary. That squares well with the expected amount of time for treatment. If it goes longer, there are other options, but I may have to rely on insurance or just go without pay for a while. But I don’t think there will be. 

I’ve been so impressed by all of the doctors and caregivers – everyone is super sharp and friendly and it’s clear they’ve all been doing this for a long time. I have total confidence in all of them. 

Amy is amazing – such a great researcher, and getting ready with special recipes, a new blanket and pillow, house supplies, preparing to take off work to drive me to chemo, etc. I am so lucky to have her here for me. 

The doctor insisted I go on the work ski trip next week so that’s what I’ll be doing! Doctor’s orders, you know. :)

That’s all I can think of for now. Feel free to ask me anything. 

Love,
Scot