Opinion #3

Last week, Jake and I attended our first brain tumor support group meeting in Appleton (Fox Valley Brain Tumor Coalition). Yes, we traveled all the way to Appleton for the meeting. Jake's parents were kind enough to drive down from Crivitz to watch Layla while we were at the meeting (Jake's dad even drove me from Hartford to Fond du Lac, where we met Jake, so that we didn't have to drive back separately from the meeting. Having Jake drive from Plymouth to Hartford after school, only to turn around and drive back to Appleton would've been ridiculous). The meeting was amazing, and we learned more than we've learned from all of the doctors we've seen to date. I'll blog more about that specific experience later. In the mean time, I'll use today's post to give you an update on today's appointment, which was with a neuro radiologist at Froedert.

At today's appointment, Dr. Bovi spent a lot of time with us and was very thorough about hemangiopericytomas, what they are, how rare they are, etc. He has seen 7 or 8 of them (which, in his words is, "a lot") and has treated them successfully. We learned from him that although doctors are leaning toward "standard" radiation, that type of radiating will be more focused than we had originally thought (before, we thought that standard meant that they would basically do a carpet bomb treatment of my brain which scared us). He explained that it's actually more focused, just not as focused as gamma ray or gamma knife. He talked more about side effects (some hair loss at treatment site, fatigue, sometimes nausea, etc) and about additional tests and monitoring he'd like to have done. We left his office with four new orders:
1. Neuro-psych (to be sure I'm not turning into a psychotic... kidding. It's to take an exam that will tell them how my brain is functioning now vs. after treatment)
2. Speech pathologist - this is because I still don't have full jaw functionality so they want to have me in some sort of therapy to be sure that jaw restriction isn't permanent
3. MRI of thoracic and spine - brain tumors like to "creep" to the spine sometimes, so they want to be sure I'm all clear there (why has this not been ordered by another doctor before, your guess is as good as mine)
4. Pulmonary consult - to be sure the "lesions" that appeared on my last body CT are what they think they are (scar tissue from severe cough) and not something else (again, see my comment above about other doctors not ordering something like this sooner)

So, this week is our Frodert week. Tomorrow neuro psych exam, Thurs MRI and neouro oncologist meeting (Dr. Malkin). On Wed, Dr. Bovi, the doctor we saw today will meet with his board to discuss my case and make their recommendation as far as treatment goes. He is fairly confident that they will be on the same page as St. Luke's and Northwestern with their "standard radiation" reco, but likes to meet with all parties to be 150% sure. Froedert's pathology lab will also be reviewing my path slides to give a 3rd diagnosis (which, Dr. Bovi believes will for the 3rd time confirm that the tumor is a hemangiopericytoma).

I'll post more later this week about the support group and what we learned there. Like I said, it was amazing, and I'm so thankful to Diane, Jake's mom, for putting us in contact with Darcie, who invited us to the meeting.

More to come... oh, and of course, GO PACK!!