Friday, May 31, 2013

I'm Not A Survivor

Austin approached me last night and told me that he felt like I paint an overly rosy picture of my diagnosis.  "You make it sound like you have a sinus infection." he claimed.  "Don't make it the end of the world, but be honest about it."

Here's the thing.  I have some mixed feelings about that. Is an Ependymoma fantastic? No.  It's not.  If you get to pick your brain tumor, you should pick a benign meningioma right under your skull.  They pop them out like pimples, or leave them in depending on size.  They don't hurt anything, and frequently they only find them by accident.  Ependymomas are rare, and they're in a terrible location.  Most adults get them in their spine, which is a horrible place to need surgery.  I got mine around my brain stem, which is incredibly dangerous.  We didn't just leave our kids for 6 weeks to get radiation treatment because the Cancer Center is pretty, we left because it's an insanely complex region to treat and we needed good, experienced doctors.  Do you know what posterior fossa syndrome is? It's where your brain basically shuts off.  It happens in people who've had surgery or radiation to the back of their brain, where I did.  They don't know why it happens, it just does.

However, I have a very strange approach to this whole thing.  Half the reason I shaved my head before surgery was because I wasn't letting my brain tumor take anything away from me.  It couldn't take my hair because I gave it up.  I needed doctors who, even if they acknowledged it was the wrong choice, told me I had a choice, because my brain tumor wasn't allowed to force me into doing something I didn't want to do, like brain surgery.  I needed to pick it because I wanted to and I had choices.

I don't want to be my brain tumor.  I don't want people telling me I'm "amazing" or "strong", and I don't want to be a survivor.  Partially because this is something that happened and not my identity, and partially because it seems wrong and unfair.  Also, partially because nobody wants to do this, you just have to do it.  I don't feel amazing or strong, I don't feel like I'm "an inspiration", I just feel like I was sick and couldn't take care of my family the way I wanted, and that sucks.

Doing the Race for Hope almost gave me a panic attack because of that stupid yellow shirt.  I feel like what I've been through is not legitimate compared to others. This lady, Carol, she has an ependymoma and she has struggled to maintain the ability to walk, talk, and do other basic functions because of the damage to her brain.  Some people lose their children, their sweet precious babies to this thing.  Mark has had three surgeries, chemo and radiation to try to kill off his ependymoma.

It seems like I got it pretty easy with minimal side effects and a successful surgery.

Beyond that, as one person mentioned to me online, "Ependymomas barely count", not because the process isn't hard or scary, or because the location isn't ideal (it isn't) but because when you consider the fact that survival in adults is so high, and then you look at something like Glioblastoma Multiforme, which kills almost universally, it does seem kind of like I had a sinus infection.  A really really bad one, but still, it could be so much worse.

It's a really hard balance that I am trying to strike.  I don't want to be defined by this forever.  I don't want a vanity plate with a grey ribbon, I don't want to become a walking awareness PSA, I don't want to be told "You're just such a fighter" as if the people who don't make it to the other side of their brain tumor didn't try hard enough.  I want to help raise money for a cure, because I don't want anyone to ever have to do this, but I don't want to walk (and didn't) as a survivor because I feel like I'm somehow faking it because it could've been so much worse for me than it was.

So, in conclusion, I apologize if you felt slighted that you brought my family food and all I had was a sinus infection.  It is definitely more than that, but at the same time, I got it pretty easy when you consider how successful my surgery was, how long I made it on radiation with no symptoms, and the fact that they removed my entire tumor, I had it pretty easy.  Or, as easy as you can have it with 16 hours of surgery and 6 weeks of radiation.  I guess being thankful for that makes me tend to gloss over the severity of my situation, but I'd rather that than be a puddle on the floor.

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. 

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, 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.  


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:

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."
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.

Tuesday, May 28, 2013

In Which I Drop Off The Face Of The Earth- Part 4

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

After I came home, I started lying.  A lot.  If you know me, I probably lied to you, too.

I didn't want to seem weak or whiny, so I only said something on Facebook when I had a good day.  Recovery was hard.  My kids wanted to be all over me and to know "are you better yet today, Mommy?" and that was hard.  Stairs were hard.  Waking up in the morning was hard.  Waiting for pain medicine was hard.  When people came to see me, I tried to make sure that I was already downstairs and seated so they wouldn't see how slow I was or how difficult things were for me.  When they were there, I tried to be alert and happy, and when they left (or got chased out by my mother and/or husband) I would sleep for HOURS to recover.  I didn't tell anyone when I had to go back in to the ER or when I had a really bad day, I just tried to buck up.  I had so much to be thankful for that it seemed ungrateful to complain.

I did get caught in my lie once.  After the surgery, I had to go in for a lumbar puncture to confirm whether or not there were ependymoma cells in my spinal fluid (if there were, they'd need to watch for drop metastases and it might have changed the follow up treatment). Lumbar punctures aren't all that horrible.  This one was planned and scheduled and so I went in, laid on a tilting table, and the doctor used an x-ray machine to guide the needle into my thoroughly numbed back and get out a small amount of fluid.  No big deal.  A few days after this procedure, however, I was having chills and terrible head pain, and so we went in Thursday night to the ER.  After doing a neuro exam and a CT, they sent us home.  Austin was supposed to have his first day back at work on Friday, so I felt badly that he wasn't going to get a great night's sleep, but he functions well on little rest, so he was okay.  On Friday, however, he got a call from my neurosurgeon that the neuroradiologist looked at my CT scan when he arrived at the hospital in the morning, and was concerned that the amount of swelling and inflammation I had around my drain site indicated an infection and I needed to come in to be sure.

Fun times. Behold, my Georgetown MedStar Folder Collection:
(That's 4 admissions in 6 weeks.  I keep it real.)

So, my mom and I outsourced my boys to play, Savannah was already at preschool, and we headed to the ER.  Because I am such a good patient (read: I don't whine, cry, complain, or even typically say ouch) one of the neurosurgery residents was going to get to do his first lumbar puncture on me in the ER room.  This was a very different beast as I had to lean over a chair, but he did a pretty good job, only sending a little "shock" down my left leg.  Dr. Ryan, who's our favorite person to see in the ER supervised and had ordered me some morphine to have in advance, so it was all good.  Afterwards, I was laying down trying to avoid a headache (which I could not do- having two LPs in less than a week is a VERY BAD IDEA if you're trying to do silly things like "sitting upright" or even "raising your head"), and the nurse (Tina- who was awesome) had just come in to check on me.  After she left, I turned slightly in the bed, and all of a sudden I turned as white as a sheet, my chest got tight, and I felt like I couldn't breathe, and I was crying in pain. Tina and the doctors came running, I earned myself some EEG leads, more morphine, and an admission.  Dang it.

So, then we had to call and get our dinner delivery canceled and get Savannah picked up from preschool, and confirm the boys had somewhere to be until Austin could get home.  Two of the three people we had to call didn't ask many questions, but I could literally hear the third screaming over the phone that people want to take care of me and help me and they can't do that if I won't tell them how I'm really doing.

Le Sigh.  She was right.  I didn't get much better at it, but I did tell her, from then on, when asked.

Also, on the 20th (which was my birthday) I got my stitches out.  Dr. Nayar is a great stitcher-uper, apparently, and I am a fast healer:
At this point in our story, I also got to start physical therapy.  My baby brother is a PTA and will be going back to school soon to get his doctorate.  Because he loves me (and/or wants to torment me for every time I wronged him in our childhood) I started two hour sessions three times a week.  After my first PT appointment, I crawled up the stairs to my room crying from exhaustion.  (Also, I've started crying more! I'm noticing that theme as I tell this story.)  He did amazing things for me, though, including Russian Stimulation Therapy, which isn't really indicated for the left-side numbness I was having, but he'd read that it might help, and it did, tremendously.  It's not comfortable, I'd compare it to having contractions during childbirth, but in your leg or hand, but it made me so much more comfortable.  We also worked balance, strength, and endurance.  He is a cruel and evil overlord, which is what makes him so good at his job.

My goal when we started was to walk in the DC Race For Hope, which was held May 5th in the middle of my radiation treatment.  Spoiler alert: did it.  Considering walking three rows of townhouses was exhausting after surgery, a 5k was quite the achievement.  (Yes, I realize how sad that is- especially since they gave an award to a woman who went back to Marathon running 3 months after her tumor resection.  Thanks Marathon Lady!)
In the midst of getting better, we also had to make decisions about radiation, but this is already getting long, :)

Monday, May 27, 2013

In Which I Drop Off The Face Of The Earth.....Part 3

If you'd like to read more of my adult ependymoma story, you can find part one here and part two here.

We were at the hospital at o'dark thirty.  Austin, my sister in law, my Uncle Mike (who's a surgeon himself), and my parents all met up to wait it out.  I gave everyone a hug in the surgical waiting room, except Austin who was able to come back to pre-op with me.  Pre-op was the only place I regretted shaving my head- they made me take my hat off and it is COLD without hair!

The nurse got my vitals, made me take a pregnancy test (Just in case!), and then the residents came in to see me, which was great because one of the residents was Hasan, who I knew from high school.  We weren't ever friends, really, but having him smile and hold my hand and remind me that Dr. Nayar was a great surgeon was very reassuring.  Then the anesthesiology residents came in and went over all the information they'd gone over in pre-op on Friday and then the doctors came.  First anesthesiology, who I can't say I remember, but he's my favorite person on earth because I successfully didn't feel a darn thing ;) then Dr. Nayar came and looked only slightly surprised by my bald head when he came to mark me.  While we waited, Austin and I joked about whether he had a catch phrase like McDreamy from Grey's Anatomy ("It's a beautiful day to save lives, people!" or something like that).  Then the nurse came in to give me a shot of "something to keep you calm, although you don't appear to need it". I really didn't need it- I was either going to wake up and give Jesus a fist-bump, or I was going to wake up and get better.  I obviously didn't want to leave three small children, but I had confidence that God had a plan for my family, and me worrying about it wasn't going to change how it worked out.

I kissed Austin, and I almost cried then, just because it was an emotional moment, but we both smiled instead.  The OR was crowded and nothing at all like an OR on TV.  I wish I'd taken my iphone so I could provide a picture, but essentially, there was no viewing gallery, and it was slightly bigger than my bedroom, not the expansive empty spaces with a bed in the middle they show on medical dramas.  A very sweet resident gave me a numbing agent so she could get the massive needle in my arm that anesthesia would need, and she missed (which was fine, because I was numb), but she seemed very upset to hurt me before surgery, so the doctor took over and numbed my other arm and got it in.  My last waking memory is a doctor or resident I'd never seen before (and haven't seen since) walking in and saying to Dr. Nayar "What an unusual case, huh? We don't see.." and being shushed by Dr. Nayar because I was still awake.  I said it was okay, I already knew it was an odd tumor, and while Dr. Nayar smiled at me from behind his mask and glared at the guy who put his foot in his mouth, I think I went out.  If there was anything else, I don't remember it :)

As I understand it, after I was asleep, a team of people flipped me into a position rather like praying where I was on my knees with my chest resting on a table and my head screwed into a halo to hold me in place in case I seized or drooped or anything.  They inserted a drain in the front of my head and made an incision up the back of my neck and about halfway up my skull.  I'm not sure why they didn't need to make the upside-down L that we'd originally discussed, but whatever, it ended up working.  Then, they got to work removing the tumor, which filled my 4th ventricle compressing my cerebellum, wrapping around the brain stem, a major artery, and snaking through my top two vertebrae, C1 and C2.
If you expland this picture, all that white stuff near my brain stem is what had to come out.  It ended up being the size of a citrus fruit with some "arms" or "tentacles".  Somewhere in the neighborhood of 6.4cm x 6.7cm x 6.8cm, I believe, but I'd have to go hunt down the pathology to get the exact mm measurements and I'm too lazy.

Anyhow.....a little over 16 hours later....

I woke up.

My poor family waited all day.  They played Cranium and Headbandz (this is why I love my family) and had food delivered from Austin's wonderful work colleagues.  They waited and watched other families leave happy and new families come in who had shorter surgeries.  They waited while the waiting room cleared out.  They waited while the nursing staff for the waiting room left for the day.  They waited while the recovery room staff left for the day.  Bless their hearts, they waited 16 hours for my surgery to end.

I had 16 hours of brain surgery.  (And I lived! If you're having brain surgery, chances are yours will be way shorter, so fear not!)

I don't remember much from waking up.  They had to take me directly to the Neuro ICU because, as I mentioned, recovery had already shut down for the day.  Apparently I overheard someone say that the surgery had taken 16 hours, because when Austin and my mom came in I demanded to know "What took so long?", which made them both elated.  I spoke.  Slowly and with great difficulty from the medication and all the trauma to my noggin, but I spoke.

The first night was HORRIBLE.  I had the only bad nurse I've ever had at Georgetown and she hurt my head getting me out of the CT scan they forced me into a few hours(?) after I had surgery.  In the ICU, my family could only come in 15 minutes out of every hour.  I remember very little from the first several days, but according to my family, I'm fun on steroids and in incredible pain.

Not really, though.

Apparently I cursed like a sailor at everyone about everything, I was super-sensitive to noise, and I just wanted more valium.

Let's take a moment to talk about Valium.  I am not typically a pain medication person (as discussed in part one) but after major skull-cracking surgery, Valium is the most amazing thing in the world, forever and ever amen.  I remember feeling joy like Christmas Morning when a nurse walked in with a syringe.  Syringes meant it was Valium time, and whether I was sleeping or just drugged out of my mind, the pain wasn't overwhelming.  I remember getting a sponge bath and freezing near to death, and I remember having Occupational Therapy come in to see if I could drink (I couldn't, having the breathing tube in for so long shut off one of my vocal chords).  I remember thickened cranberry juice tasting like the best thing on earth because I was so very very thirsty after a few days, even though I was getting IV fluids.  I remember blowing IVs....I think I had 18 different IVs started, by my last day at the hospital, they had to call in the vascular team who tried to start one in my foot (SAY NO TO FOOT IVs!!) and then used an ultrasound machine to place one about 2 inches from my armpit.  I remember them taking out the drain, too.  It was very weird because when they pulled it, there was this strange sensation as cerebrospinal fluid leaked down my face, but it was the same temperature as my body so it didn't really feel wet.  Then I got stitches without drugs, and that wasn't so cool, but it was only two. (Edit: I feel like I should mention that most of the pain in recovery was from them having to move and cut muscles around to get the tumor off of C1 and C2.  I remember (yay! memories!) My Uncle The Surgeon (Muts) talking to Dr. Nayar before heading home to NC, and as a spinal surgeon knowing what the muscle damage would mean for recovery.  In a voice I would assume is only used on the clinically incompetent and those in delerium from post-surgical medication MUTS told me "They're going to offer you some pain medication.  You're going to want to take it."  That man didn't get a medical degree for nothing, people! He was RIGHT!  Take the meds!)

Other things happened, but I don't remember them.  Apparently I had roommates, apparently I saw my SIL, apparently we had dinner in the waiting room on the 13th for Savannah's actual birthday, apparently my friend Gaby came to say goodbye (she came up from NC to help with the kiddos), apparently I can drop the F-bomb with the best of them, but I don't remember.  (In addition to the valium, I was on steroids to help combat post-operative swelling and I apparently get some roid rage.  Your family will forgive you because you didn't kick the bucket, and it gets better quickly as they wean you off).

As far as side-effects, I had MASSIVE blisters on my knees and breasts from having the entire weight of my body on them for 16 hours.  Massive.  I still don't have feeling in those locations, either, except for little bits of pain as the nerves come back.  The left side of my body feels like it has pins and needles.  I couldn't swallow except mechanical soft (and they kept trying to feed me pureed turkey and mashed potatoes, so now I have a gag reflex to jarred turkey gravy!) the first few days, but I'm better now, although I still can't sing right.  I was slow (both in speed and in speech/thought), but I'm getting better from that, too.  I developed a few more fun things after radiation, but this is what I remember from the hospital. My neuro exams were all great, and even though my left side "felt" funny, it was still strong and functional.  I consider that pretty miraculous.  Your brain stem controls some pretty important stuff.

I was in the hospital for 8 days.  Most of those were in the ICU, although I did get to go to the stepdown for 2 or 3, and my favorite nurse Grace was there.  I love Grace.  Getting ready to be discharged, one of the Neurosurgery residents confided to me that after such a massive surgery, they expected me to be in the hospital for weeks and discharged to a rehab facility, but I had never really considered that option, and apparently that wasn't God's plan, either.

When I went home, here's what my head looked like after some cleaning (I did manage to get an ICU nurse to let me take a real shower by promising to take my mom in the bathroom with me, hooray!):
 This is the incision up the back, obviously

This is where the drain was inserted (staples) and where the drain came out (stitches near the bottom of the picture).  You can't see the screw holes very well, but they're still there.  I don't think my hair will grow back there.

So.  That was an adventure!  I was diagnosed with an Ependymoma (they can't tell you for sure what a tumor is until they put it under a microscope), and the great news was the surgery was declared a total gross resection (they got it all).  Adult Ependymomas are rare to begin with, but they're especially rare in the brain.  Most adult Ependymomas occur in the spine, the presentation that I have is more typical in children.  You can read more about Ependymomas at the CERN Foundation website.  There's not a lot known about these tumors, but they're learning more every day.  Being a rarer type of tumor, the lack of research and protocols makes it even more difficult to take the next steps in treatment, but we'll cover that next time.

Saturday, May 25, 2013

In Which I Drop Off The Face Of The Earth, Part 2

(You can read the beginning of this story here)

Hopkins was a nightmare.  In their defense, I had prayed for God to make it crystal clear what our treatment should be and where we should go, and boy howdy did he ever.  Baltimore is the official sponsor of potholes, apparently, and the idea of driving home after major surgery scared me before we even got to the hospital.  When we walked in, it was overwhelmingly large, and a woman barked at me to know where I was going.  It took 6 elevators 3 turns to get everyone in, and we shared an elevator with a man in a gurney with his face covered with a blanket and moaning in pain. When we arrived in neurosurgery, giant overhead deli-counter signs indicated whose turn it was.  We went to check in, and despite a lengthy process to GET an appointment (I had to turn in information/letters from my neurologist, radiologist who reviewed the MRI, insurance forms, and personal health background just to see IF Hopkins would see me) my information was not on file.  Yay.  

When we went back to see the doctor we'd been assigned to (who is very experienced and I'm sure very wonderful for other people) his resident walked in, did a neuro exam, and asked me about my background.  The doctor came in, repeated this, and then told me that he had hopes for me for a long, happy life after surgery.  He then explained that my Georgetown MRI was inadequate and before he could tell me about surgery, I'd need either a new Hopkins MRI or to wait for them to reformat my Georgetown scans.  That would be a week.  Then, he'd develop a plan and meet with the brain tumor board to go over it.  That would be a week.  Next, he'd look at his speaking schedule, and get in touch with the team he likes to use for operations in the posterior fossa (that's the back part), and get me on the calendar.  I'd be looking at surgery in around April/May.  Edit: Austin reminds me that the doctor came in and hadn't even looked at my scans and tried to tell me that there was probably something in my spine that Georgetown hadn't even looked for and that he'd need all this information and blah blah blah, and Austin, luckily, was like "umm, dude? Did you even look at the MRI?"  The answer, apparently, was no, he hadn't, he just assumed Georgetown hadn't done anything and didn't read any of my medical files before coming in to inform me he knew what was best.  I apparently, had mentally checked out already and couldn't respond to those claims.  Bring someone to your appointments, people.  

Wait a tick, Georgetown had an emergency tumor board meeting, cancelled patients, and says I need surgery NOW because the tumor is so large (they estimated 5 cm, it ended up being between 6 and almost 7 in some directions) and it's starting to cause fluid buildup.  You're telling me I can wait until April or May? 

We asked about the possibility for hydrocephalus, and the doctor assured us that if I got worse, they could just pop in a shunt.  They've done hundreds of these surgeries, I didn't need to worry about it, they knew what was right. 

Cause that's fun. 

We left and I was ready to cry.  This was all wrong, I was a number to these people, another complex surgery to write up, and I was not involved in the process.  I called my friend Lisa, who has a background in brain tumors, and we chatted about my misgivings.  Her feeling was that with brain tumors, you either biopsy it or get it out ASAP because she's known of cases where the "benign" tumor ended up being one of the most deadly you can have, and by the time someone figured it out, it was much too late.  She also assured me that while Hopkins is a great name in tumor care, if Georgetown wanted to make my life and treatment a priority, and I felt peace about discerning that, she felt peace about it, too.  Lisa is a rockstar, and brought me steak before my surgery, which was all I wanted to eat.  She's fully awesome.

So, we decided forget Hopkins, and we set our calendars for February 5th. With great peace. Then, Austin realized that he'd left his laptop in Baltimore when we got home, and we laughed at how clear this decision was being made for us. 

Let's take a moment to discuss the amazing things happening in the background.  My daughter's birthday is February 13th, which I probably wasn't going to be home for, if I was even alive. 
 This is my daughter's 5th birthday party, which my amazing friends and mother put together from my pinterest board.  Everyone took a piece and made it happen, from the decorations to the candy bar, event the insane cake I had wanted to make was there! I'm sure I'm forgetting someone, but Jen, Stacey, Pam, Jennifer, Sheri, Caitlin, and anyone else who made this happen were my heroes.  Caitlin didn't even bring her daughter to the party because she had family in town, she just showed up to help and then left.  Amazing. I had spent all week at doctors appointments (Friday was pre-op testing/interviews at Georgetown- interesting aside- the girl that got us to sign the tissue bank forms (to keep the tumor for research) had forms that expired 5 years ago....and scrubs from Johns Hopkins) and this amazing party happened anyway.
It was very, very important that I didn't get sick, and I was also in a lot of pain and pretty tired at this point, so I got to kick it with a face mask, and much like people visiting a newborn, people were Purell-ed coming in the door.
I wore a mask to the boys' Pinewood Derby, too.  I was really glad that we got to do fun things before surgery, even if I was weird looking.  There are no words for how grateful I am for everyone who stepped in to care for my family.  Sheri took on a meal list and is actually STILL coordinating meals for my family.  My mother, bless her heart, was handed a laundry basket of curriculum and a class/sports schedule in late January when we got my diagnosis and told "good luck" as I headed off to doctors appointments.  My friend Sarah set up a prayer party (because "vigil" sounded like death) and we had dozens of people who prayed in 15 minute intervals starting when we left for the hospital well before the sun was up on Wednesday for surgery.  Another friend, Amanda, had people come and join me for worship and prayer in my home on Tuesday evening.  I cannot adequately express what comfort and joy that time of worship brought to my heart, and all the women who came to be with me and pray for my family and my doctors, and myself were just awesome.  Amanda even played the piano and Sarah (a pastor's wife, but not your grandma's pastor's wife) brought hymnals.  When people broke out into melody and harmony for "It Is Well With My Soul" my heart was so happy!

We have had more people come and bless our family than I can count.  Or send emails for.  Or thank you notes.  We are just dedicated to trying and paying it forward, and I think with the completely unmerited favor that has been shown to our family, I'll spend the rest of my life doing that.  People dropped off gifts for my children, took over my tutoring duties (thank you, Pam!), brought food- even when they didn't know us!- and scheduled playdates or helped drive, and they prayed.  My goodness were we covered in prayer.  Even Austin prayed, and in his own quiet way, took in all the prayers and clear responses of God that were happening, and for that alone, I am thankful. Oh, and my sweet sister in law came to be with my husband.  She made me feel such peace about him waiting for me on the day of surgery, and I know he needed her to be there, too.  My brother stepped in, too, and had picked the kids up after dinner for a sleepover at his house.  He even took the day off work on Wednesday so that he could keep the kids busy and happy.  

I think we would've kept having church in my living room on Tuesday night until I had to leave Wednesday morning, but luckily for everyone else's children, my next appointment showed up.  Dr. Nayar had explained he'd need to cut off portions of my hair, one in the front for my drain, and a long, upside down L in the back for the tumor resection.  I've always wanted to donate my hair, anyway.  A local salon owner came to my house to do it, though, because I wasn't sure about I could do it in front of people asking me why, and because I thought if Jordana (my SIL) did it, that we'd cry, and I was not crying.  We were past the initial 24-hour crying period, so none of that.
Skipping ahead in the story, if you're getting brain surgery, just shave your head.  First of all, if you've never had the chance to sugar-scrub your scalp, you are missing out on one of life's greatest pleasures.  Second, you're going to wake up bloody and gross.  Third, you're not going to want to take care of your hair after major surgery, and fourth, think of all those cute kiddos you could be helping! It is much better when you can provide as much good to the world as possible in the face of something tragic.  Behind my head are socks from my book club.  I wore all of them (and still am) and enjoyed all the tiny treasures and treats they sent before surgery.  The hats were particularly helpful. 

Surgery preparations will vary, but mine included no food or drink starting at 10pm and washing before bed with Dial soap and again in the morning with Dial soap.  I couldn't really sleep, so I wrote Austin little notes to read during my surgery.  They were all supposed to be funny.  Dr. Nayar had guessed my surgery would run between 4-8 hours, and we told people 10-12 so they wouldn't be texting or calling while my family was still anxiously waiting.  I wrote Austin 13 notes, just in case.

We were all wrong. 

Friday, May 24, 2013

In Which I Drop Off The Face of the Earth- Part 1

I don't think I have tons of people following this blog that don't know me in real life, but I know a few Classical Conversations moms were dropping by for my weekly lesson plans, so I wanted to do an update.

Starting last year in June, I started having some head pain.  I couldn't lay on my stomach to read, I got headaches that were nearly debilitating, my back and neck were in terrible pain, and running (even though I'd just run the Cherry Blossom 10 Miler) was impossible.  In July I went to our local ER convinced I was having an aneurism because the pain was so bad.  In general, I'm pretty stoic.  I had three babies with no pain medication, I don't go to the doctor, "I'm fine", so for me to be crying in pain and laying in a ball on the bed meant it was bad.

The doctor told me I was having migraines, to take some nasal spray and a pain killer, and man up.

So, I tried.  I couldn't use the pills the doctor gave me- they fixed the pain, but knocked me out cold, which isn't really an option for a mother of three young children, let alone a mom who is a homeschooler.  I spent a few months being a substandard mom.  My kids went through their workbooks for math and English some days with me curled up on the sofa with a towel over my eyes, thinking that if it was a migraine I needed to avoid light.  The pain got worse and I got frustrated and short-tempered.  I tried essential oils and every over-the-counter I could get at.  I went to my general practitioner who ran some blood work, I went to a chiropractor, and it just kept getting worse.  When I woke up in the morning and sat up in bed, I felt incredible nausea and like I'd run head first into a brick wall.  Every. Single. Day.

I walked out of Christmas Eve service in tears from pain.

The last hockey practice morning of 2012, I passed out in the hallway when I was helping Riley brush his teeth. I spent the next week in bed crying and my mother had to come over and take care of the kids because I was literally unable to function.  I found a neurologist that could see me on Thursday, and I think I got her attention when I led with "I don't want any drugs.  I just want to know what's wrong, and I don't think it's migraines."  Compassionate, kind, and wonderful, the neurologist acknowledged that while chronic migraines fit for my symptoms and age, and she would help me to find a medication regimen that helped me if that ended up being the case, she opted to rule out a few things based on family history, and ordered an MRI for the next Thursday.

The following Thursday, she called me about 40 minutes after my MRI.  I missed the call, but she called me back at the end of the day, ironically right as the Peapod Delivery Guy was bringing groceries (my sweet hubby wasn't letting me drive until we figured my fainting out- $5 for peace of mind is worth it).  As Austin let the delivery guy in, my neurologist was telling me I had a brain tumor in one of my ventricles, which was blocking my spinal fluid in some capacity, causing the nausea and neck/back pain, and, of course, the headaches.  Austin came up to ask me about where I wanted the groceries just as I hung up (It was a good call.  I asked the doctor to spell "subependymoma" and thanked her very much for getting in touch with me.) and burst into tears.  Understanding without asking anything, he went back down and tipped the delivery guy and came back upstairs so I could choke out the news.  My mom had the kids already, so we gave ourselves 24 hours to panic and freak out, and then, we did what the original doctor had recommended and manned up.

The thing is, God has a plan for my life, so me worrying about it and crying about it, and being angry about it, wasn't going to change anything.  I felt such tremendous peace when I turned the entire situation over to Him, and I'm not just saying that, I honestly did.

My initial consultation with a neurosurgeon was with Dr. Vikram Nayar at Georgetown, who went over my MRI with me in detail, talked with me about my options, and then decided that he'd like to admit me for testing.  He was worried about hydrocephalus (this is where your spinal fluid is trapped in one spot, causing a whole host of problems, most notably death) and being admitted also let them get a few other things worked out, including an MRI with contrast and a spinal MRI (Ependymomas, the type of tumor I'd eventually be diagnosed with,  have a fun little tendency to drop metastases into your spine- whee!).

Have you ever had a 2 hour MRI? They're not fun to begin with, and in mine, I had NPR playing in my headphones talking about Hillary Clinton making another run for the presidency.  It was horrible.  :)

I was admitted on Monday, and on Wednesday Dr. Nayar had enough information to let me go home with a surgery date for the following Wednesday, February 5th.  He wheeled a computer into my room and told Austin and I that the tumor was more extensive than they originally thought, that his proposal was surgery, the exact procedure he expected to use, the side effects, the chance of death, the duration (he guessed between 4-8 hours), and then he told us what would happen if we opted not to do the surgery.  He also told us he had great confidence that he could successfully extract the tumor.

What I loved about Dr. Nayar was that he gave me the option.  Granted, if I didn't get surgery, I would die, too, but I liked that he didn't dictate to me that I MUST do anything.  He calmly and patiently answered our questions, and scheduled to move his clinic patients so he could book my surgery.  I felt great peace and confidence about Dr. Nayar, and had been praying for discernment about what to do, but we'd booked an appointment at Johns Hopkins before going to Georgetown, so we went on Thursday for a second opinion.

(We'll pick up there tomorrow)