Mayo Speaks

Today was the day we went to the Mayo Clinic in Rochester, MN. It's about a 2-hour and 15-minute drive from our home. Fortunately, the clinic at which I get my WMD therapy is directly on the way, so I was able to stop in for that.

The appointment with the brain tumor expert medical oncologist was scheduled for 1:30 pm. Initially Mayo had set up another appointment with me at 10:30 am. This was because they were planning on doing a bunch of diagnostic stuff (MRI, lab work, etc) before the actual doctor's appointment. When I told them I could get them recent results for everything for which they were looking, they said that would be fine. So, since they wouldn't need to be doing their own diagnostics, I asked if I still needed to be there at 10:30 am. They assured me I did.

This morning we make our way to the reception area and I let them know I'm there. The woman handed me the typical insurance release form to sign. I said, "Please tell me that I didn't come here 3 hours early just to sign this form." After looking through her stuff she said, "I'm afraid so." Not happy.

On further reflection, I realized that some of the results had been sent directly from my clinic to Mayo and some of the results I had hand-carried this morning. I suppose they did need some time to go over the stuff I hand-carried. The good news is that when I met with the doctor, he had definitely done his homework and was familiar with my case. So I got over it.

So we sat in the waiting room for a bit, sat in the car for a bit, then went and had a divine lunch at Victoria's. Lori had the spaghetti carbonara and I had pesto angel hair. Oh, so very yummy.

Then came the moment for which we've all been waiting - the meeting of the brain tumor expert medical oncologist. Lori and I both liked this guy right away. Far from humorless, but mostly a no-bullshit-just-the-facts type. First thing he did was briefly related to me what he knew about my case. Like I said, he'd done his homework.

After that, I explained why we had travelled there to see him. He emphatically agreed that when dealing with brain tumors one must seek care from brain tumor experts. I have to admit that I was a little anxious that we would be left feeling like we had wasted everybody's time with this 2nd opinion thing. He certainly didn't think so.

Then we talked about what treatment I am currently receiving. He said he pretty much agrees with the treatment plan I'm undergoing, though he's not certain he'd have included the chemo at this point. He said the chemo is usually recommended with radiation in cases with grade IV tumors. But he said using it with grade III tumors is certainly acceptable and not unreasonable. Later we were talking about our desire to take an aggressive stance with my treatment and he said that by all means we should then be doing the chemo with the radiation.

We talked a bit about other treatment options like high-dose chemo/stem cell replacement and positron therapy. He gave his views and why these treatments are not indicated for my case. These questions were really about curiosity, not that these were therapies we were considering.

Then we looked at the pre-op and post-op MRIs side by side. Wow. I'm going to insist from now on that any consultation involving comparison of MRIs features the side by side format. This way we could see how profoundly different the two are. It's impossible to describe it without showing you pictures. You really can't see how squished and disfigured things were in there before the surgery until you see how it's supposed to look, i.e. basically what it looks like now.

This was a theme to which the doctor kept coming back. On at least three separate occasions he talked enthusiastically about how phenomenally well my surgery went. Which leads us to the best part of the whole day.

We were close to wrapping up and we'd been talking about people with brain tumors who survive for years. The doctor said, "Nobody knows for sure, but these are the reasons I think you will be on the long tail of that curve: You have good health going into this, your excellent surgery results, and the way you're handling the treatment." From your lips to the ears of all gawdz everywhere, good doctor.

On the way home, I said to Lori, "He should have added a fourth reason. Because when we hear someone on the inner circle of the team say that they are not a brain tumor expert, we go find someone who IS a brain tumor expert to sit in that inner circle with us."

Let's celebrate Go Team Jeffrey! and by that I mean each one of you reading this. Let me hear you ROAR!

RAWWWWWWWWWWRRRRRRRRR!!!