Tuesday, September 04, 2007

Gearing Up

The MRI was uneventful this morning. Having been through it once seems to have done the trick as far as not having my boundaries so egregiously compromised like before. I took a couple deep breaths as they were sliding me in, closed my eyes and went all zen, and 25 minutes later it was done. Like butter.

I was surprised to hear from Connie (aka The Angel) this afternoon letting me know Dr. Ebersold saw the MRI already and everything looks spectacular from a post-surgery perspective. That is to say that the surgery is healing very well. It says nothing about what the Onks are going to say when they see the MRI from a "what's left here that we need to radiate and poison" perspective. That's coming soon enough.

I am becoming more and more concerned with the Onk situation. During this period of time I've been addressing this new challenge in our lives, it has been hammered into my head that I unequivocally must do everything I can to make sure that my care is entrusted to experts. I have been counselled on numerous occasions that when selecting neurosurgeons, oncologists, radiation oncologists, etc, I should be looking for people who handle at least 25 brain tumor cases a year. I scored big-time with my neurosurgeon; he is without a doubt, by any standard, an expert.

The Onks I'm meeting with are staff physicians at the cancer care center at my hospital. I'm sure they are well qualified and quite likely are experts in some field. What I am anxious about is that it's highly unlikely either of them are brain tumor experts. Assuming my guess is correct, this means I am going to have to go to bat for myself and insist that experts are consulted. I don't necessarily have to be seen by a radiation oncologist brain tumor expert at Mayo, but I need to have one on the team. There's no reason my case can't be reviewed by the best person available at Mayo. I want to know that a brain tumor expert is looking at my MRIs and pathology reports and weighing in with his expert opinion.

I am usually a fairly laid back guy... prefer to go along and get along. Not like me to make waves unless it's absolutely necessary. I think we're in absolutely necessary territory now.

I caught up with my general practitioner, with whom I hadn't spoken since the day we came home from the hospital. I was asking her about strategies for preparing my body for the assault that radiation and chemo promise to be. I understand that chemo wreaks havoc on one's immune system so I'm especially concerned about taking extra special care there. She is going to see about getting me in touch with a homeopathic physician who practices at the hospital 20 minutes from home. I gather he is a bit of a guru in the local community... very well respected and liked. I say let's expand the team.

I received an email today from a cousin with whom I haven't had contact in probably 30 years. The kids in my family were quite close with the kids in her family, even though we lived almost 1000 miles apart. Every year at least, we'd spend a couple weeks with them when they would visit in Oregon. This is in addition to a couple memorable trips to where they lived in Canada. Trips to places like Banff and Jasper. Her email triggered a flood of mostly forgotten memories for me to replay this afternoon. It was very nice. I am hoping to talk more with her and to open up comm lines between me and the rest of her siblings.

2 comments:

MandM said...

you are a great Team Captain, I like your perspective and plan, especially the expert @ Mayo and the holistic guy...very glad your surgery is healing good.

GO! TEAM JEFFREY!!!!!!!

Anonymous said...

Hi Jeffrey! Just got caught up on your blog. Sounds to me like you are experiencing very normal post-surgery, cancer diagnosis feelings. I remember it was a huge time of adjustment with my mom. Without question, check out the Mayo site and you will find tons of info. We also found a great site based out of Canada that had huge amounts of info. My sister and I spent hours on the internet finding every bit of info we could. Our search was mainly for second, third, etc opinions and trials that might be available. She had Stage 4 Multi-Forme Glioblastoma; automatic terminal diagnosis. I know how hard it is, but I know you have only good things to look forward; after the Onks are done with you ;)
Hang in there, think good thoughts and I will be thinking of you.
Shana