Monday, January 24, 2011

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!!

Thursday, January 13, 2011

LONG overdue update

Okay people, here we go. My very overdue update on my latest encounters with doctors, overall health, test results and future. My apologies for not keeping this blog more up to date. Before Christmas, I became the proud owner of a smart phone. How does this fact relate to the fact that I haven't updated my blog? Well, for those of you who may still have a "dumb" phone (you know, one that's just used to call people and talk... so archaic), I'll explain. Smart phones make computers look like the old school IBMs that have a huge box backing. You know, the ones that kids under, what, 10 or 15 wouldn't recognize as an actual computer if it hit them in the head? Once you have a smart phone, thinking of actually getting off your lazy ass and walking to a computer, opening it (that's talk for those who have a laptop vs. a desk top), logging in (which I now think is a waste of time for chumps) only to check a few junk emails and possibly post an update to your personal blog, seems like a task equivalent to climbing Mount Everest. ;) After realizing that there are many of you who still aren't up to speed on my latest, I crawled under my bed, dug out the dusty laptop and here I sit, ready to give you my "light at the end of the tunnel" news.

I'm not sure if this is possible, but at a glance, it looks like the last "medical update" I provided was end of November? Is that right? I could investigate further but that would mean taking more time to look through my blog and, well, I don't want to because I haven't ingested the appropriate amount of coffee yet this morning so I'm not functioning properly. If I start searching for the last real medical update, A.D.D. will kick in, I'll think of something different, and wonder off, never to be seen again. So bear with me if I'm adding anything you already know. This is going to be a Cliff's notes version (or as close as you can get to that as possible when trying to include details about cancerous tumors, breast lumps, scans, tests and arrogant doctors)...

In early December, Jake and I went to see Dr. Raizer, a neuro oncologist at Northwestern University in Chicago. Dr. Ahuja, my surgeon, referred us to him after the pathology report showed that my tumor was a hemangiopericytoma, which, Dr. Raizer confirmed for us, is a rare, aggressive and cancerous tumor. Because of how rare it is, doctors decided I needed to be monitored with a series of tests (CTs of body and bone scans, as well as evenly spaced out MRIs). Thankfully, CTs and bone scans came back clean, with one minor blip: a lump in my right boob. Scared the shit out of me and really pissed me off. When I got that news I pretty much said to God, "Are you fucking serious?!" Less than a week after finding out about the lump, I had it removed, and two days after that was told it was benign. Raise your glasses people. Shortly after finding out the lump was non-life threatening, Dr. Raizer confirmed for me (after much stalking and near death threats on my part) that my CT scans looked good otherwise. Fact: doctors don't always give a shit if their patients might be suffering from severe worry, panic attacks or negative thoughts while waiting to hear from them on whether the CTs of your body are covered with cancer spots or not. They just go about their day as if the news they have is equivalent to whether fucking strawberries are on sale at Whole Foods. Dicks. Anyway, that was all good news and a huge weight off my shoulders.

This past Monday, we had my last (or so we're told) MRI that is supposed to tell Dr. Raizer (and his tumor board at Northwestern) as well as Dr. Ahuja at St. Luke's (and his radiation board) which type of radiation they'd like me to undergo. I'm told they'll most likely recommend gamma knife radiation - a one day procedure that focuses on a small, pinpointed area so that the radiation only "burns" the bad cells and tissue vs. the good brain tissue (God knows I don't need to be burning anymore good tissue). This news was a relief and gives me hope that we'll be through this soon. We are told we'll find out by the end of this week, or early next week (which means end of next week). ;)

At one point during my appointment with Dr. Ahuja at St. Lukes, I told him to just tell me what the hell was going on and what we needed to do to get the show on the flipping road with treatment. He started to tell me that the decision they make needs to be the right one for me and my super rare tumor, not one they make for time's sake. As he said that, and I'm not joking here, I reached up, with both hands and put them around his neck, as if I were going to choke him. I seriously had no control over myself at that point. After a second or two, I realized what I was doing and put my hands down. It was then that he told me that my tumor is about as rare as dinosaurs or black diamonds. I'm one of very few in the U.S. who has been diagnosed w/ this type of tumor, so they have to research and treat accordingly (whatever that means). The other obstacle is the fact that surgery really pissed off my brain, so it's still swollen and showing some post op aggravations that make it difficult for doctors to see all they need to. In any event, they didn't see anything "new" on the latest MRI images, which is a good thing. They just need to be able to see past the swelling and fluids to decide where to focus radiation, and to do that they have to upload the images and blow them up on a big screen or something like that.

Anyway, I'm doing well, feeling well, and ready to zap the shit out of the bad stuff in my brain, and take my life back. I'll be heading back to work soon, most likely part time, then easing into my old full time schedule. Looking forward to that, to seeing my coworkers, etc. Oh, and I can drive again! Freedom!!

I'll do better w/ posts, I promise. As soon as we know about treatment, I'll add a post.

To my elders, superiors, professional acquaintances, sorry about the swears. But I've found that swearing is super therapeutic for me so I've got to do it. I promise I won't do it at work, or in any sort of professional / family setting where it might offend (not out loud at least).