Tuesday, June 11, 2013

Check-Up at Duke

I had already decided that I want my after-care to be at Georgetown.  I love Dr. Deepa, who treats me as an intelligent human being and gives me options.  If I'd needed medical oncology, rather than radiation oncology, I would have gone with her, not that Duke isn't amazing.  However, since that wasn't the case, I'm very happy with our choice to go with Dr. Kirkpatrick, and he needed some MRIs.

So, we decided we'd do one final follow-up appointment at Duke with the Brain Tumor team, and then we'd see Dr. Kirkpatrick 2 months from the conclusion of treatment, and the rest of my follow up could be at Georgetown with Dr. Deepa, except when Dr. Kirkpatrick wants to see me, which I'm more than willing to drive to Durham for.

We piled in the car at 5am to head to Durham Regional Hospital for my MRI.  Duke's Cancer Center couldn't get me an appointment with my oncologist and an MRI on the same day, and I refused to get a hotel room for an MRI.  I went back on time, but the MRI (full spine, full brain, with and without contrast) ended up taking four hours instead of the regular 2-2.5.  Four hours is a lot of time to be laying on the still-angry incision on the back of your head, a long time to be laying still in a giant plastic coffin, and a long time to try to focus your attention elsewhere while you try not to think about the fact that you're trapped laying on your still-angry incision in a giant plastic coffin. I did get to sit up once when they took me out to reposition me for my spinal MRI, and when they pulled me out to give me the contrast, they wouldn't let me sit up, but agreed that they'd do my contrast MRI in reverse order so that I could turn onto the side of my head as much as possible in the head restraint until they got done with the thoracic spine. MRI's don't freak me out, but I don't love them, either, and I spend most of my time "not thinking about it".  You can't really meditate or pray, it's too noisy and you get moved on the table somewhat frequently, and so when I have earplugs (Duke does earplugs, Georgetown actually gives you headphones with music) I spend most of my time trying to play Vivaldi's Four Seasons in my head and trying to match it up somehow with the MRI noises.  I'm weird, I don't know what you want me to tell you.

However, after about 2 hours, I run out of mind games to play with myself.  Even laying in the same position and trying to be still is hard, especially when you're trying to ignore pain.  For me, most of it turns to self-discipline and reminding myself that if I move it'll take longer, that if I move, they'll have to start over, that even if they take me out and let me sit up, they'll still have to put me in and finish.  When they finally took me out, and no, I have no clue what took so freaking long, the nurses told me they were so impressed and that most people could never have physically done what I'd just done, and that I was a great patient and a machine.

I just wanted to get out.

At that point, we'd missed my bloodwork and my doctor's appointment at the cancer center.  They'd called ahead, though, and worked me back in.  Shout out to the lab team at the cancer center- those people can get me in one stick EVERY SINGLE TIME.  I love them.  I want to bring one home with me so that anytime I need an IV or blood draw I can just tell the nurse "no thanks, brought my own".  When I finished my bloodwork, I headed up to the Brain Tumor Center, and we started to wait.

I was feeling fairly patient based on the fact that they were working us back in, but remember, this is the same doctor who I'd been scheduled to meet with my second to last day of treatment, and after 2 hours ended up walking out without being seen. Yesterday, we were put in a room at 2:40pm.  Around 3:30, a nurse practitioner came to talk to us, and was so friendly I couldn't be too mad.  When nurses started going home at 5pm, I was angry.  I'd had a three inch breakfast wrap at 7am, spent 4 hours in a tube, and had been sitting in a room for 2 hours.  I pitched a fit at Austin, especially knowing that the kids and my mom were waiting, too, since my mom drove down so Austin could work in the car, and demanded that we leave.  He refused, and we were finally seen a little before 6.

At that point, I was not on my best behavior, and more or less told the doctor to sum it the heck up because I was leaving.  She seemed very nice, and was apologetic that it took so long, but I reminded her that I'd already waited two hours on another day to see her, and that I was not interested.  I didn't even want to look at my MRI, but Austin did, and his opinion does count for something since he's done this whole mess with me.  Because the MRI was done at Durham Regional, instead of at the Cancer Center (which was supposed to be on the SAME software- I asked three times!), they couldn't do side by side, but they did set up a laptop and the main monitor so we could look at my post-op MRI and my new MRI from yesterday.

(Side note: I realize there are lots of people that have way worse things going on than I did yesterday, and I want them to get their time with the doctor, but if you can't see me at the time you told me, then tell me you'll call me, or give me a pager ad tell me to go have lunch, but don't stick me in a room after I've already been in a tube!)

Y'all, it was amazing.  The part of my brain that was "missing" from where the drain tube was has filled in completely.  There is no sign of tumor, inflammation indicating tumor growth, or even necrosis.  I'm still fairly swollen in there, so they sent me home with some steroids to help with the pain and headaches, and hopefully some of the other random symptoms, and they also told me to try melatonin for my inability to sleep, but it looks great right now as far as being ependymoma-less.  The oncologist even said that to someone who doesn't look at brains all day, it'd be hard to tell I even had surgery (especially once the swelling is completely gone).

Like it never happened. Glory to God.

That's probably the weirdest part about all of this- that your life can be so completely overturned, and that some things are still so wrong, like my leg and my arm, or even like my complete aversion to groups of people- but that one day it'll be like it never happened.  One day my hair will grow over my scar, one day there won't be anything visibly wrong with me, one day, there will be people in my life who, if I didn't tell them, wouldn't know that this happened.  It makes me think about all the things other people have hiding under the surface that have impacted them deeply and shaped who they are, but that, because I can't see the scars, I would never know happened.

PS- I'll be on steroids for the next little bit, so in case I go all "Hulk Smash" on you if you see me in real life....it's not me, it's the roid rage.
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