Mayo Clinic - been there, done that, loved it.

Mayo Clinic trip is officially complete. Let me start by saying that the drive there and back was a lot longer than I expected it to be. I think it ended up taking about 5 hours each way. Mostly because of our little Layla Bugs needing breaks and the fact that Jake is serious about babying our 'runner' car ("Ronda the Honda"). I'm sure there's some logic in his methods, but if you asked me to drive (he didn't, which is probably a good thing since I can't drive stick), I would've had the sucker pinned the entire way there. I don't drive slow. I have a heavy foot and have more tickets than I'd like to admit. I've also been known to speed past people that I know on the road, while they're trying to wave at me or flag me down, without even knowing I was passing them until they bring that little interesting fact up later. Oops.

Now, onto details of the Mayo trip. Let me first start by explaining my strategy for the trip. Since this was the 5th hospital we've visited, I felt like I had a pretty good idea as to what my day would end up looking like (check in at Mayo for my appointment, and wait. Wait, then wait more, then wait. Maybe throw in a few additional tests here and there, then wait, then see the big important doctor roughly 6 hours after my scheduled appointment). That's not how it went. Mayo has their SHIT together people. First of all, their shuttle program is insane, in a number of ways. The shuttles run on a very tight schedule and the drivers are committed to their schedules. This leads to rides to and from Mayo that resemble the bus ride we took from Montego Bay in Jamaica to Negril - fast, abrupt and frighting. But whatever. I was picked up and dropped off on time, so I wasn't about to complain. Anyway, because of our previous hospital experiences, I told Jake that it would be best if he stayed back at the hotel with Layla so that she could play at the indoor water park with her as long as absolutely possible, and that I would call him when things started to pick up.

My appointment was at 9:15 on Friday. I was called back at 9:20 (that's a record for sure). Before being called back, I handed off all of the discs I had, with every single MRI, CT, etc., that I've had since day 1. Because there was so much that I was handing off for review, I thought for sure there was no way in hell I'd see a doctor who knew what on God's earth was going on with me until at least noon. The doctor was in the exam room with me by 9:35, and, he apologized for his "lateness". Whaaaaat?!?!? He told me he wanted to get through every scan I brought to be fully informed on my situation, which is why he was 20 minutes late. Well, you better have a good excuse, Mister! ;)

The doctor started by telling me that he reviewed my scans from the most recent (January) to the earliest scan (October). He did this so that he could make his own decision as to whether he saw a trace of anything on my scans without knowing where the tumor was to begin with. I thought that was interesting. He said that if he didn't know any better, he wouldn't know that anything had ever happened to my brain (besides some very regular and expected scar tissue). We discussed my concerns about doing radiation, which were basically that if the tumor has been completely removed, the full body and bone scans show no traces of tumor activity or other cancers in my body, etc., that I don't feel comfortable doing radiation when there isn't a 100% guarantee that the radiation will PREVENT the tumor from recurring. He agreed with me fully. He said that if my objective was to have a clean scan every 3 months, then sure, I could do radiation. But if my objective is to prolong my life, then there's nothing that says radiation will do this, especially given the fact that there is no tumor to pinpoint with the radiation. This would be a completely different story if there had been even a trace of my tumor left behind during surgery (say, for example, if it was in a place where it would've been dangerous for the surgeon to remove it). If that was the case, then my one and only option would be radiation (chemo isn't an option for my tumor). Thank you for that to my surgeon, Dr. Ahuja. The doctor also confirmed for me that yes, radiation has side effects. Obvious ones and ones that some people don't often know or think about. Radiation could potentially do harm to me, if it spread to other parts of my body (which it likely would) which may or may not show physical signs of damange in my lifetime, but if they did, I'd be pretty upset (for example, another type of cancer).

In any event, the doctor said that I do not have to pursue radiation and will be safe continuing on with observation (MRIs every 3 months, full body CTs every 6 to 12 months). Because of our preconceived notions of what would happen at Mayo, Jake was not with me when the doctor made his appearance and shared the amazing news with me. I'll tell you one thing, I think that was one of my top 5 "stay focused" moments of my life. When a lot of information is coming at me at once, I tend to get lost in it, or, to hang on the one important fact that has been mentioned, which in this case, was that I wouldn't have to do radiation. I had to do everything I could to take that wonderful fact, put it in my pocket and continue listening to the other questions he was answering for me. Some of those questions:

1) Is this tumor genetic (yes, I've asked this 1,000 times before, but why not ask again, especially if I'm at Mayo)? No, it's not. This tumor develops because of something that happens to your DNA after you're born. What exactly that "something" is, no one knows for sure.
2) Can we have another child without the risk of a tumor recurring during preganancy (really, what we were worried about, was that the crazy pregnancy hormones might spiral my body into producing another tumor)? Yes, we can have another bambina (or bambino) without the risk of the tumor recurring because of pregnancy hormones. Some tumors, like the meningioma, have receptors that react to pregnancy hormones and grow as a result of the hormones being produced in the body. The hemangiopericytoma does not have these receptors. Whew.
3) Statistics show that there's a 70% chance that my tumor will come back. Really? Is that for realz, yo? ;) The statistics are real, but not certain. And that number is not 100%, so, it's not definiate that my tumor will come back. Holla. I knew it! :)
4) Meds... Seriously? Do I have to stay on these anti-seizure meds for a super duper long time? No, probably not. 6 months minimum, because of the fact that I had surgery on my brain and the tissue has been "messed" with, which, regardless of whether a tumor is there or not, could cause a seizure, espeically within the first 6 months after surgery. The doctor was confident that we could speak to my oncologist at Frodert about beginning to taper off after 6 to 8 months.

I'm pretty sure there were other questions mashed in there that I'm forgetting, but the good news is that today at 3:00 the Mayo doctor (Dr. Uhm), will be getting on a conference call with Jake and I to answer any additional questions that we have, and assure Jake that the good news I gave him wasn't just a load of crap that I made up because I didn't want to do radiation.

So, all in all, a very successful trip. Jake and I finally feel like we can celebrate a milestone in this whole adventure. Although it only started 5 months ago, it feels like it's been going on forever and we were beyond ready to get some good news and have a little break from all of this. With that said, I have my first regular MRI next week Monday at Froedert. Cross your fingers that it comes up clean. Then I'll continue on with my MRIs every 3 months, so the next one won't be until June.

Thanks to the Meyer's for making the trip to Rochester to see us and support us!! It meant the world to us to have you there and to be able to celebrate our awesome news with you, and Layla cries every night since we've been home because she misses you. I'll post pictures soon.

Also, thanks to Nate Baily and fam for visiting w/ Nina and Lyla. It was great to finally meet your little peanuts and to spend some time w/ ya!