June 19 - More waiting

Spent some time with Dr. Liem, radiation oncologist, today. Laid out the treatment plan. But wait ... it appears I haven't yet been scanned enough, so he would like a PET scan. It can be done at the same time as the first CT scan but he wants to confer with the PET technician before he schedules everything.

So we wait again. Should hear from him by Thursday with a date/time for the CT/PET scan. The CT purpose for this scan is to build a 3-D image of my body and also create a body mold. The 3-D image will be used to design the distribution of radiation so it is focused most tightly on the tumor. The body mold will be used every time I get radiation to ensure I am always in the same position.

If they do a PET scan, it will be used as a baseline for follow up. He says renal cell cancer glows more brightly on a PET scan.

So here's the plan as I understand it.
1. I have the CT/PET scan to create baseline images and body mold. This appointment is yet to be determined ... waiting to hear back from Dr. Liem.

2. Two weeks after the CT/PET scan, the treatments can begin. These will be about 10 minutes each ... I originally thought 20 minutes, but that's the amount of time I should schedule, not the amount of time for the scan itself. I will have up to 20 of these treatments, depending on how I react in terms of side effects.

3.Then we wait approx 3 months and take another look with either CT or PET. We monitor every three months for as long as a year. We will be able to tell during that time one of the three possible reactions: (i) the tumor has shrunk ... hooray! (ii) the tumor has stopped growing ... also hooray! (iii) the tumor is still growing ... time to look for another treatment.

I had some new revelations during the discussion of details:
1. I had thought the response would be much faster. This news that we might wait as long as a year to determine if this has "worked" was quite a surprise.

2. Much as I hope we can shrink this tumor to nothingness, just halting the growth of the tumor is a success. Of course I want this thing out of me, but not being able to do that, halting its growth is a good option. As Dr. Liem said ... there's no problem with it just sitting there and doing nothing.

3. I finally got a mental model for how to think about this as a chronic disease. I already have a chronic disease ... heart disease. I treat it daily with medication ... I occasionally have to spend some time in the hospital due to an acute attack ... no one could look at me and tell I am sick ... life goes on. This is so different from having a surgery, a long hospital stay, and a longer recovery and then moving on. I can live with this and just keep going on.

Interesting!