Thursday, May 30, 2013

IWIFOTFOTE- Radiation at Duke

You can read Part 1, Part 2Part 3Part 4, and Part 5 of my incredibly long retelling of my adult ependymoma story, too. 

Six weeks is a long time.  My treatment started on a Wednesday, so we left home Tuesday to go settle in to our hotel.  Originally we stayed at the Homestead Inn and Suites in Research Triangle, but that didn't work out because it was disgusting.  It was nice to have a kitchenette with a stove and a full fridge, but the rooms were dirty and cigarette smoke poured into our non-smoking room from the adjacent smoking rooms.  Even the air conditioner, when we turned it on, sent nasty smells wafting. I tried to buck up about it, and we stayed for about two weeks, but when our kids came to visit the third week, we switched to the La Quinta.  We didn't have a freezer anymore, which sucked, but I had gotten so depressed about being in the room at Homestead that to improve my mood it was worth it.   Duke does have a place called Caring House that's kind of like a Ronald McDonald house for grown ups, but children aren't allowed and I'm not into the whole "Cancer Mentality", which I'll talk about tomorrow, so it wasn't for us, but it's a great option.

Treatment actually only takes about 10 minutes.  That meant that I spent most of my time sitting in our room while Austin telecommuted.  I read, I watched TV, I napped, and I eavesdropped on his work meetings because I was bored.  He was really good about taking me places to get me out when he was done working, though.  We went on walks and out for ice cream and it was manageable. 

You can walk to the Sarah Duke Botanic Gardens from the Cancer Center.  It's beautiful and you can get WiFi if your spouse needs to work while you enjoy a bench.
Backing up a little, my first day of radiation was horrible.  I came back and felt nauseous and had a headache and felt disoriented.  I was really upset because I had heard that radiation wasn't going to be bad at first, but after a long nap, I felt better on day two.  After that, radiation wasn't really much to comment on for a few weeks.  Occasionally I would get these horrendous metallic-tasting burps, which is probably the most random complaint in the world.  If you ever have radiation and you get them, too, the good news is that you can make them go away by eating Sweet Frog Frozen Yogurt.  You can substitute Ben and Jerry's in a pinch, but I preferred Sweet Frog so I could get gummy bears.  Luckily, eating hasn't really been my friend since the surgery, so I didn't get any fatter from my ice cream consumption during radiation.  
My friend Gaby came up to see me week two and brought her adorable girls.  They made my heart happy.
We went home on weekends so we could see the kids and go to their sports events.  Week three, they came down with my momma and spent the week with me, and it was the happiest week I had.  It was so nice to have distractions and to be able to leave the room and go out.  I'm not complaining- Austin's work was so incredible to let him telecommute, and I know he had to get stuff done, and by the end I wouldn't have gone anywhere, anyway, but it was so great to have the kids and my mom week 3.
We hit a Durham Bulls game, the Science Museum in Raleigh, the Children's Museum, UNC Chapel Hill, the Lemur Center, and of course the hotel pool when the kids came.  There's lots to do with families in Durham/Raleigh/Chapel Hill.
Starting at the very end of week 4, I got tired.  At first it was just a little more tired, but then it was TIRED.  Tired like "chewing sounds like effort" and tired like "should I get up and go to the bathroom, or should we just tip the maid more because the bathroom is like, 5 feet away".  Helpful hint for those of you supporting someone receiving brain radiation, they're getting worse every day, not better, so when you are trying to encourage them, go with "you're getting closer to being done!" and not "this is making you better!" or "you're getting stronger every day!" because they're actually getting weaker and worse every day. 
If you really want to be supportive, forget telling the person anything and get them some Unicorn Slippers.  My friend Liz got these for me as a joke, but I love them.  The radiation oncologist at Georgetown told me that the original ER doctors that missed my tumor did it because a tumor didn't make sense.  Doctors are taught in med school that "If it neighs, think horse, not Zebra."  I am a zebra.  When I put that on facebook, Liz told me I should call that doctor back and in no uncertain terms let him know that I am a magical f-ing unicorn.  Thus was born my magical unicorn status.  Just so you know.
Some people don't have side effects from radiation, I feel like I should mention that, but one of the most common side effects is exhaustion.  Also, your brain is probably going to swell a little bit, so any neuro symptoms you had will get worse.  My left side is so much worse now than it was when I finished PT with my brother, which is because of the swelling.  Typically they can give you steroids to help combat that, and it helps with the tiredness, too, but since I was a super genius and got bronchitis during my final weeks of treatment, they didn't want to give me steroids because they repress your immune system and getting pneumonia wasn't something any of us were interested in me doing.  Did I remind you guys that you should ask before you touch someone who's getting any kind of brain treatments? You should.  Frequently the side effects make no sense, and you can't see them.  The invisible man stabbing my leg, for example, doesn't really make sense to anyone because nobody did anything to my legs, but when someone pats my leg because I'm sitting down and they want to be kind, it hurts like the devil! Same with rubbing my arm (or bumping into me, just another reason that I avoid really crowded situations or strategically put Austin or my mother on the left side of me) or patting my shoulder on the left side.

My only other big side effect was that around the end of week 4/beginning of week 5 my hair started falling out in the radiation pattern.  It drove me nuts because I'd grown back about an inch of hair, which was just enough to fall down my shirt or stick on me in the shower.  Luckily, the Wahl Clippers and I fixed that up.  I have cute hats, I don't need hair.  Also, I have hoop earrings, and scarves.  That whole "look in the mirror and remove one accessory" thing doesn't count when you're bald.  You can have as many pieces of flair as you want. 

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