Wednesday, May 29, 2013

IWIDOTFOTE....Part Radiation Planning

You can read Part 1, Part 2Part 3, and Part 4 of my adult ependymoma story, too.

This story is way longer than anyone probably cares to read, but just in case there's someone out there who it helps, I'll keep on telling it.

Ependymomas are great because they have a very high survival rate at 5 and 10 years.  Ependymomas are not great because, well, aside from invading your brain, they are incredibly rare, especially intercranial ependymomas in adults, and there's not much research or concrete results for various treatment plans.  

I was told my particular tumor was a high grade 2 ependymoma.  It was undergoing mitosis at a rapid rate of around 25% or higher in some locations, and typically for grade 2 they like to see that number under 10%.  However, my tumor cells didn't look "as ugly as typical grade 3 cells", so they graded it a high 2.

That's right, people, my tumor cells are pretty.
This is from Nature.com, but I hope they died my ependymoma pink, too.
Also, interestingly, they're not sure if Ependymomas are cancer.  Some places say yes, other places say no.  My take is there was a thing growing in my brain that would have killed me, they treat it with surgery and radiation, and I have an oncologist.  If it looks like a duck, and quacks like a duck, it's probably a duck.  Also, it's faster and easier to just say "yes" when people ask if it's brain cancer than to explain the different scholarly journal papers that I've read offering various opinions.

So, I had my maybe-cancerous tumor removed, it was a high grade 2, I had no traces of ependymoma cells in my lumbar puncture.  Some cancer centers would tell you that in a total gross ressection of a grade 2 ependymoma, radiation is not indicated.  Others would tell you that in grade 2 ependymomas, radiation therapy is necessary even if the tumor was completely removed. 

Since nobody knows for sure, we again made it our mission to find doctors who made us feel like we were part of the process, and not a number they were treating.  Sadly, that didn't end up being radiation at Georgetown, although we sure tried to make it be.

At my first follow up visit after surgery, I met with a radiation oncologist at Georgetown.  His take was that depending on the pathology from the lumbar puncture, I would need some measure of targeted brain, full brain, and spinal radiation.  It would last 1-7 weeks, might include cyber knife, might not.  Long story short, we had a really hard time getting a firm answer out of radiation oncology at Georgetown, even after the pathology all came back.  Eventually, they even switched my doctor on me to someone new who didn't have experience treating posterior fossa patients, and we weren't interested.   There are a lot more details in here about how things went in a way that wasn't how we wanted, but it's not really worth retelling.  If you know the joke about how a guy drowns and goes to heaven and asks God "Why didn't you save me?" and God replies that he sent a weather forecast, a boat, and the National Guard, you know why we decided to stop fighting for Georgetown to work.

My oncologist at Georgetown is (because I like her better and want to do my follow up with her) Dr. Deepa Subramaniam, who is their brain tumor specialist. She is fully awesome, and, again, is the type of doctor who includes me in the conversation and decision making.  We didn't end up staying at Georgetown for radiation, but if we'd needed medical oncology treatments, I would have had no hesitation being treated by her.

With lots of unanswered questions, and getting a second opinion no matter what, on my friend Lisa's recommendation we called Duke's Robert Preston Tisch Brain Tumor Center and spoke with Dr. Friedman.  This guy is also fully awesome.  (Why would you see an oncologist who's only moderately awesome?) How awesome is he? He's so awesome that he doesn't have time to get dressed up for CNN- he's too busy curing freaking cancer.  
We met with him for about 10 seconds, during which time he confirmed that we should not have been impressed by Johns Hopkins, that my tumor required radiation, and that Duke would take amazing care of me if I decided to come down.  

In addition to Dr. Friedman, we also met an oncology nurse, a pharmacist, a children's social worker, an adult social worker, and my radiation oncologist.  Duke has an amazing system that is patient-centric wherein your team of doctors hover around you and all know what's going on.  There is no struggle to get things done or scheduled, there is no question everyone on the team is actually on the team and informed. It's magical.

The non-magical part is staying away from home for 6 weeks while you get treatment.  Duke (amazingly) was very quickly able to tell us that I would need 30 treatments over 6 weeks (they start you mid-week and end you mid-week).  My radiation oncologist was Dr. Kirkpatrick.  He's also (did you guess fully awesome?) fully awesome.  The man has radiation symbol cuff links.  Come on, that's awesome.  Duke uses the Novalis system for brain radiation, which allows them to get millimeter accuracy, which is super important when they are messing with your brain stem.  

So, we went home, confirmed that my amazing mother could continue homeschooling and caring for the kids, and we made plans to head south.  Before we actually started treatment, we also had another appointment at Duke for some preliminary testing.  First I had to get another MRI and then I had to get fitted for a radiation mask.  For other parts of your body, radiation involves getting small tattoos that show where the beams should go in, but thankfully they don't tat up your face and claim it will give you street cred.  Also thankfully, Duke told me they were going to put the mask on me, which was a nice change from the one at Georgetown where I laid down for a CT scan for "planning" and they started putting stuff all over my face.  

Communication.

So.  Again with the crying, my MRI took forever because they had to keep switching the headpieces and they did with and without contrast.  By the end of the MRI my head was starting to really hurt from laying on my incision, which just so happens to be on the exact location all of the weight from my head ends up.  When I sat up, it went away, so I thought I was okay.  When they put me in the CT machine to do the mask, though, the pain came back and became unbearable around 20 minutes into the mask hardening.  Luckily, Austin had come back to sit with me, so he called the nurse to ask her how much longer.  She said 30 more minutes and asked if I'd like a little something for the pain, and Austin laughed until I said "Yes, right now", and proceeded to explain that I try to avoid pain medication like the plague, so if I'm asking for it without being offered it must be bad. Unfortunately, they gave me something that didn't really work, and I think the pain was compounded by my brain having this conversation:

Pain Center: "SIT UP YOU GIANT IDIOT! THIS HURTS!!!"
Logical Center: "Oh, hello, friend.  We're kind of strapped in here."
Pain Center: "I WILL CUT YOU!"
Logical Center: "If we make them get us out, we'll just have to start again."
Pain Center: "SIT UP SIT UP SIT UP"
Logical Center: "Actually, this rather hurts.  Maybe you should sit up.  Oh, goodness, we're trapped."
Pain Center: "WE'RE ALL GONNA DIEEEEEE!!!"
Logical Center: "TRUTH!!! WE'RE ALL GONNA DIEEEEE!!!"

No one actually died in the making of this mask.
Essentially, how this works is they put some saran wrap on your head and lay you down in warm goop.  Then, they put a bite plate in your mouth and put very warm plastic pieces over your chin and forehead.  Next, they put very warm plastic mesh over all that.  When it's molded to their satisfaction, they cover you up with cold washcloths to totally freak out your already confused skin help expedite the cooling and hardening process.  You lay still for 40-50 minutes until the mask is hard.

PS- people with claustrophobia, brain tumors are not for you.  In addition to all the MRIs in a tube, you get to wear this beast every stinkin day for treatment.  I found it best to not think about it.  I closed my eyes every day before they put it on and just tried to zone out to somewhere else.  I don't have claustrophobia, but if I thought about this:
Then it all went downhill pretty quickly.  

Also, I feel it bears mentioning that based on the doctors we talked to, our understanding is that we're buying time.  Both the doctors at Georgetown and the doctors at Duke said that I could choose not to have radiation and could expect the tumor to return in 18 months-3 years.  With radiation, I could expect the tumor to return in 7-10.  They're hopeful I could not have it recur, too, but realistically they're giving me time to get my kids in or through high school before I have to do this again, and they all promised me that they'll have more research and better treatment by then.  

Much like the mask, I choose not to think about it.  Much like my surgery, worrying about it won't change the outcome.  We did everything we could do, and it all went as well as it could, and the rest is up to God.  Also, much like my surgery, even if it didn't go well, and even if I died, God would still be God.  If the tumor comes back, it will be okay.  God will still be God, the world will still turn, and we'll deal with it.

But I don't have to think about that right now.
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