11 October 2013

Heady Stuff

Here we go again . . .

My head feels slightly less awesome today than it did a couple weeks ago, because yesterday I went in for Gamma Knife Radio Surgery for the third time.

I had a brain MRI last June, after about 5 months of no cancer treatment, and even though I felt fine, Dr Jason didn't like the looks of the scans. He suggested I get Gamma Knife within the next couple months, ideally by the end of July. To play the insurance game, he was going to put in a request for coverage right then (with my approval), before we found out, from the following week's scheduled CT, if anything serious was going on in the rest of my body. Gamma Knife on the brain is one of those new-fangled, super-expensive therapies that the insurance is loath to cover anyway, and extremely likely to deny if there is evidence of broader systemic disease.

In the event, I decided I'd rather not subject myself to a CT at that time, nor was I interested in getting Gamma Knife over the summer. I filled out the acid-green end-of-life desires form (Do Not Resuscitate) and posted it on the refrigerator for everyone (EMTs called to the house for an emergency) to see.

You see, I had planned out several months of summer vacation, and was not yet ready to return to the drudgery of clinic work.

The summer was delicious, with a week-long visit from my 9-year-old friend P to go to horse camp and then a few days with the rest of her family; cousins traveling with me to Orcas for a mini-retreat; a visit from my best friend from the days of linguistics; and ten days on Orcas with our boat, among other things. Just before our trip to Orcas in August we decided to put in motion our plans to build our dream home.

Ian, strong, stalwart, loving, sensitive, and direct, asked me if building on Orcas, if actively working toward the goal of our future home together, was enough for me to consider using Western medicine again, if it appeared there were still some things in it that theoretically could help me extend my life. Yes, it turned out, our Orcas home was the kind of goal I could wrap my soul around.

In late August, after reestablishing my dedication to our land, I had a blood draw that showed my tumor markers had gone up, but not, in my personal experience, a huge amount. I requested staging scans for six weeks later, when my port would be due for another flush. I would discuss a treatment plan then based on what those scans uncovered. I contacted Dr Jason to get an MRI at the same time, which happened last week.

Ian has been on furlough since 1 October. We're lucky about this because one: he already knows he's going to be paid his salary for this time (someday). But two: we have a pretty big financial buffer, so the only discomfort we've felt with the situation was a brief stepping-on-of-each-others-toes for the first couple days. He was on vacation; I was still at work. Since then I've delegated some of the householding exercises to him, but then three happened: my six-weeks-to-port-flush was up and scans and medical issues leapt back into the spotlight. It's been a blessing and a delight having my sweet companion lock-step with me through this latest part of our journey.

I've discussed in past posts my yearning to be a good student--to ace the exams, to impress the authorities, to SHOW THEM what I can do on my own. That kind of attitude makes objectivity in the face of information difficult, however, so I've been spending some time working on changing my thinking. I decided that, instead of looking at these scan results as some judgment on my character or prediction about my life, I would look at them as prerequisites for allowing me to choose Western medical therapies. There is a lot to be said for the brilliance and dedication of the scientists and doctors who work with the physics and chemistry of modern medicine, but the methodology of accessing this brilliance is likewise scientific rather than personal.

That said, my results were personal rather than the expected norm: while my MRI showed one relatively serious spot near a ventricle and a somewhat larger spot in a less serious location, the six other blips that showed up on the screen were, to Dr Jason's surprise, pretty innocuous considering the lack of care and attention they'd been given for several months (arguably, because of the vagaries of the blood/brain barrier, I haven't had brain treatment since December of 2011).

Since he was free, Ian had driven me to my MRI and follow-up last week, and he and I decided together to go ahead with Gamma Knife, as soon as we could get on the schedule. Things fell tightly and serendipitously into place this week like the pieces of a jigsaw puzzle: (Monday)Car Toys-Witch Doctor-Urban Float-(Tuesday)PET/CT-(Wednesday)Piano Tuning-Witch Doctor-Dentist-Mom&Marsh for dinner/movie-(Thursday)Gamma Knife-Dr Specht for PET/CT review. We never felt hurried, we just felt that things were right. And my PET/CT also had personal results: a bit more activity in long-term bone sites, but no new sites, and no soft tissue involvement. In other words, also pretty surprising for Dr Specht, considering my last TDM1 was almost 8 months ago. In a couple weeks I'll probably go back in for some more TDM1 (with premeds), but we'll decide for sure in a couple weeks.

In the meantime, I woke up this morning feeling almost euphoric after yesterday's events. I think I said it best to Dr Jason, in my first email of the day:

"Hi there--just wanted to let you know that I feel--psychologically--really good about yesterday. I (with the help of Ian) made the choice to do Gamma Knife directly when and because I felt it was right, instead of just doing it when you, who I trust, thought it was right. Subtle difference, but boy, I feel empowered."

Enjoy the pictures Ian took here.


  1. Wow, I thought I was doing pretty good to have three medical appointments next Monday, Wednesday and Friday. I guess most of us already knew who was in charge.