Mask making

By | Fri June 1, 2018

We were surprised at how quickly we got the call to go up to Hamilton to get mom setup for cyberknife radiation treatment. This involved the making of the mask, which were allow in to see and for me to take pictures.

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The mask making process took about 15 minutes. Then we waited on as mom had an MRI and then a CT. The CT was done with the mask. The information collected was to be used to plan out the radiation treatment.

We were surprised to get the call on Thursday that mom will have treatment on Monday. One session – which is good. The doctor said that her tumor was slightly larger than before (no idea how much is slightly), but he seem to think it wasn’t a big deal. I also left a message for the doctor yesterday about tapering mom’s steroids, which is needed for the clinical trial. I was surprised to get a phone call from the doctor this morning to discussion options.

Now knowing the date for radiation, we called the clinical trial folks to kick that into action. The trial coordinator will talk to the doctor and put a plan in place. We are still not 100% certain that mom will get into the trial. They need to do additional analysis on the biopsy and probably need to do another biopsy in order to determine what type of pRCC she has (type 1 or type 2) as well as if her cancer is MET-activated, such that a MET-inhibitor (the trial drugs under test) might make sense. There are people on the trial who are NED – but I don’t know if they had surgery, and I don’t know how advanced their disease was before they went into the trial. We expect to hear mid-next week from the trial coordinator about the next steps.

I really expected this process to give me a sense of “this shit is getting real”, but it hasn’t. I think I had more of that sense while watching the move Bookclub. We went to the Welland theatre, which has the nice lounge chairs. We were surprised at how busy it was – the theatre was packed. The movie was good – a comedy about older women in a book club reading 50 shades of grey. It was great to laugh. I laughed but I also couldn’t help see parallels in my parents lives. As I watched the movie, I had a sense of loss that I haven’t yet had. The sense is a grieving for the fantasy future – or an empathy for the loss of the fantasy future. My parents worked so hard that it sucks that they didn’t get a long retirement to enjoy – that long retirement of good health is a fantasy future that we all have – but it isn’t a reality for most. It reminds me to get stronger and take advantage of my health while I have it.

I’m also struggling a little because this time, mom isn’t better when I’m leaving. Last time, she was so sick when I got here, that by the time I left she was doing infinitely better. This time, when I arrived she was doing well, but now is struggling more – struggling with her breathing – waiting for calls from the palliative care doctor. Hopefully we can see her today!

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