Tuesday, April 28, 2009

Bad Brains

Without a doubt, the number one place you do not want to see your cancer spread is to the brain.

This week I'm facing some realities of my own brain predicament and trying to come through it like all the other challenges I've faced.

Over time I've been fortunate enough to surround myself with some terrific doctors. My family doctor has always been a champ, and has been there for important support around every curve. My current oncologist is extremely impressive and has become the champion of my cancer cause.

But I'm having difficulties this year with the cancer repeatedly showing up in the brain.

And I haven't felt real comfortable with the neurosurgeon who was leading the charge.

Both my family doctor and my oncologist recommended a different neurosurgeon. Yesterday Barb and I met with him for the very first time.

The neurosurgeon spent quite a bit of time with us. We discussed a lot of aspects of my situation, options, potential gameplans. We discussed everything. Barb and I both felt it went well.

Right now I have three very small "lesions" in different areas of the brain. All are very small, the largest measuring 2.5 millimeters in diameter at its largest point.

The doctor recommended that we wait 30-days, then do another MRI to analyze the situation from there. Are these three continuing to grow? Though unlikely, has the chemo had any effect on them at all? Are there any new ones?

The neurosurgeon felt that the Gamma Knife is there when we need it. But he didn't feel we needed to rush into it since my current lesions are so small, and at this point somewhat insignificant.

It all made sense to me. Barb and I were coming into this meeting thinking we'd leave with a schedule for Gamma Knife treatment. But I have been thinking that the Gamma Knife treatments were becoming too close together. I mean a Gamma Knife every month just is much too often.

I left the meeting feeling good. I will still have to have a big sit down discussion with my oncologist in the weeks to come. I may also have to tap into the latest drug information through the doc at the University of Pennsylvania.

But driving home from the neurosurgeon's office I felt like I had the right team around me.

That afternoon my former neurosurgeon's secretary called me to inquire into why I had decided not to return to see him. Then my former neurosurgeon himself called me.

I can respect the general nature of the call. Somehow he had gotten a copy of Friday's MRI of the brain and wanted to make sure that I was receiving the care I needed. That's very respectable.

But there was a nature to the call that I also found disturbing. It's still bothering me today. It felt like I was breaking up with a girlfriend.

He must have told me seven times that my new neurosurgeon was "just out of training." To me that showed being upset over losing businss to the competition. But that was part of the problem, I didn't really feel like as much of a patient as I felt like business, dollar signs.

He also was very negative towards my health prognosis.

I do realize that I have faced challenges, and have many challenges still to face. This kidney cancer is very serious and tough stuff.

But I don't need my doctors reminding me of that. I need my doctors ideas, efforts, and positive support.

This neurosurgeon bothered to tell me what a mistake I was making. How I should have Gamma Knife treatment right away and not wait. He blew me away.

Upon talking he basically told me that his plan was to do one or two more Gamma Knife treatments in quick succession and then basically give up. At that point he was willing to simply turn it over to chemotherapy.

I'm sorry. But giving up is just not going to be any part of my gameplans.

I, of course, was very calm and polite in speaking with this doctor. At one point it really felt like he was trying to pick a fight with me. I had to say to him, "I'm a passive, mellow guy. I don't ever want to get into arguments. I'm just looking for as many opinions and as much help as I can get.

It was all strange. On one hand, that was the most passion I've seen this doctor show towards my case since I started seeing him more than two-years ago. But on the other hand I feel that it's more because another doctor will be billing the $37,500 Gamma Knife radiation treatment.

(sigh) What a day.

1 comment:

Anonymous said...

Bert,
We think that you are right to look at a doctor that gives you a better "gut" feeling and this new one seems to have a more than just a roll over and give up attitude.

Keep the faith!!