Thursday, October 31, 2013


We've been so incredibly blessed thus far with our health insurance covering everything I've needed, with the exception of one doctor at Duke using their billing code for the hospital and not the cancer center, which was an easy fix.

So far.

Yesterday, I went to Georgetown for my repeat MRI (which I'll have, potentially, for the next decade), and found out that my insurance thinks I'm all better and don't need ongoing care or repeat MRIs.


I would love to think that's the case, but if I'm being honest, I've had a REALLY bad couple of weeks. I know that everyone told me that the year after treatment could have ups and downs, and I'm doing okay this week, but two weeks ago I literally thought I was going to die, the pain had gotten so bad.  I wasn't functional, I wasn't happy, and it made me happy that I was going to get the silly MRI so I'd know that nothing was wrong and it was just a bad few weeks of healing.

No dice.

Apparently, what happens now is my doctors are involved in a "peer to peer review" process where they'll work to convince our health insurance company that I need to have treatment be ongoing since they are working on the assumption that my ependymoma will come back at some point.  (I'd like to work on the assumption that it's not, but I'll be okay if it does- still, someone has to be the 20-30%, and I pick me!) So far it's just my oncologist at Georgetown, but after we hear back from our insurance with details, we may get my radiation oncologist at Duke/the social workers at Duke involved.

I understand that this is all par for the course with insurance deciding that they're done paying, however, with the timing being what it is with the Affordable Care Act and friends on Facebook posting about how they're losing their coverage, I spent all day yesterday petrified that I was going to lose my insurance altogether and we'd never be able to afford my care.  Then I had nightmares all night long about it, although one of them was okay- I was getting interviewed on a combined Colbert Report/Daily Show and I was really funny ;)

Silver linings, people.

Anyhow, now we just have to wait on insurance and my doctors to advocate for me to get what they're telling me I need.  More fun in the journey, right?

Tuesday, October 29, 2013

Rice Krispies Map of Europe

Homeschooling! Yay! Because we do that around here when we're not having brain tumors ;)

Geography is always a struggle for us.  I don't really like doing it, and frequently the CC woman on the cd drives me nuts when she pronounces things like "Seine" which she says "sane" and "Caucasus" which she says Kaw-kay-sus.

When have you ever heard someone on CNN talk about the Kawkaysus region?  Never.

(Sorry hardcore CC lovers!)

If I haven't offended you enough for you to leave, let's continue.  I decided that for our bi-weekly review day that we invite our Classical Conversations community to, I'd do a geography only day.  This way, I could give families a reason to encourage their kids to focus on Geography, and we could make something fun.

The idea was originally that each mom would be responsible for one week of information, and kids would earn "decorations" for their map that corresponded with each week.  It didn't end up working like that- instead families worked together to review and compile their maps, but it was fun.

To prepare- first you'll need to figure out how many families you're going to have.  Next, you'll want to  go to BJs or Costco, because we're about to make some serious Rice Krispies Treats.

For example, we had 8 families coming, so I made 8 maps of Europe.  That requires you to make 8 recipes of treats.  The good news is that as you make each map and trim them, you can heat the trimmings in the microwave (we found that 2 minutes was about right) and then roll them back out.  I have a giant poster-puzzle of the world from our local teacher's store, and I used the Europe piece blown up to 150x (the teacher's store did that for me, too!) which ended up giving me a pattern that was roughly 1x2.  You'll want to roll your treats out pretty thin (and use copious amounts of butter on both the aluminum foil and rolling pin!).  I used foil-covered cardboard, but you could use whatever you want that fits your pattern.
Doing all of these ended up taking me about 4 hours, not including clean up.  I had my mom helping me, which really helped!! I also cut Russia off- but our memory work doesn't go very far into Russia, and I didn't want to make any more Rice Krispies ;)

The day of our review, each family brought a different component.  We had:
Dark blue frosting (European Waters)
Light blue frosting (European Rivers)
Skittles (European Cities- one color for each)
Twizzlers Pull N Peel (Country boundaries for Western European Countries)
Flags with names (European Peninsulas)
Hershey Kisses (various types for each range of European Mountains)
The kids earned their maps for knowing week one (Continents and Oceans) and some white frosting "glue" for knowing week eight (Mid Atlantic World)

Here's how they turned out:
I think that everyone had fun.  I ended up hearing about it second-hand because my daughter spiked a fever overnight and I couldn't host, but luckily another CC momma was willing to let 8 families invade her house- so my mom and visiting Sister in Law were able to take the boys.  

Friday, August 23, 2013

Cycle 2- What We're Using

This year, I have changed our format DRASTICALLY.  After having to leave my mom with a laundry basket of books and a wish for "good luck", I knew this year I wanted more structure.  Previously, I've spent lots of time building out from the Classical Conversations memory work to create a well-rounded program.  This year, since I never know how I'll be from one day to the next, we spent a little more money and exchanged it for my time.

(For the record, my kids were still well over 90th percentile in their standardized testing, so the "good luck" approach seemed to work just fine, but I didn't want to risk that again!)

Here's what we purchased:
History/Bible/Geography (it all comes in one convenient package!) 
Sonlight Core B+C
Sonlight Core B=C 2nd Grade Readers
Sonlight Core B+C Kindergarten Readers
(Already have Story of the World on CD for listening/Story of the World Workbooks for supplementary activities for Riley)

Singapore Math Kindergarten B/Singapore Math 1A
Singapore Math 2A and 2B
(Riley is still finishing up his math, he got a little behind in his workbooks when he focused on multiplication and division speed, but we'll get him into 4A asap, and he's still matching up on his VA SOLs for math as "on grade level" so we're okay)

Language Arts (Reading/Writing/Spelling)
Sonlight Grade 2
Sonlight K (will still use Teach Your Child to Read in 100 Easy Lessons)
The Essentials Program (holy heck is this program both good and INTENSE!)

Handwriting Without Tears K, 2, and Cursive 1

Mavis Beacon Teaches Typing for Kids
Austin is going to be teaching the boys computing one evening a week as his class (how fun!)
Savannah will work on for her computer time

This is the one portion that I didn't buy a prepared curriculum for.  We're doing some biology, some astronomy, and some physics in CC, and the kids really like to work along with the memory work here, so I'll still put science together.

Classical Conversations (Memory Program)
Cycle 2 Science Cards
Cycle 2 CD
Cycle 2 flash cards
CC Connected (monthly subscription- the boys like reviewing their memory work this way!)
Trivium Tables for Geography (I find having these makes geography go faster for my little ones)
(Already had the guide, timeline cards)

Checking In

Over the last week and a half, I had my 6 month (!!) MRIs and check up appointments with my oncologist, neurosurgeon, and radiation oncologist.  I don't know if people typically follow up with so many doctors or if I'm just an interesting case so they all want to follow up.  The CERN Foundation posted a picture of "adult ependymomas" the other day, but since I'm an adult with a pediatric presentation, I'm even more weird ;)

My brain appears to have completely healed from where the drain was, and the hydrocephalus is completely gone.  I have no signs of tumor regrowth, although there are some "focii" on my brain stem from the surgery/radiation.  All in all, really really great news.  My next appointments and MRI will be in November, and I am already looking forward to being put on the twice a year/once a year schedule rather than the quarterly schedule I'm on now! MRIs don't bother me, but I'm sick and tired of them!

I'm still incredibly thankful for the many blessings God has given our family during this process.  From Austin's job (love that health insurance!) being so flexible to the amazing and skilled doctors we had access to to all the people who have cared for us to the fact that I am functional, it's been amazing.

Thursday, July 25, 2013

50 States: West Virginia

We decided we'd like to take the kids to all 50 states before they leave for college.  We're collecting shirts, too, to turn into a quilt for each of them to take with them.  We started last week with a trip to Wisconsin.
Because I still get tired so quickly, we decided we'd start easy and go to West Virginia to see my godmother, Beth.  It was so nice to get a visit with Beth and her husband David.  Typically, we come out for big events they have for all the cousins in their family, and we don't get to spend a lot of time with them one-on-one, so this was special.  We went to a place called JayDees, which was a combination waterpark/Chuck E. Cheese/putt-putt and they also had a nature center, which was like a fantastic children's museum and was only $5!! The kids had a ton of fun walking around to each of the rooms, although we could only spend an hour because the nature center closed earlier than the rest of the facility, and then we took a short train ride on a mini train so the kids could "pan" for gemstones, which is always a huge hit with Logan who's my little collector.  After that, we went to see Despicable Me 2, which the kids really loved, especially the boys.  The adults all had fun, too, as it was a cute love story without being too lovey-dovey :)

Beth and David were so kind and hospitable, and we enjoyed being with them.  They've totally changed their diet over to organic and mostly fruit and veggie based, and we really enjoyed all the yummy food they had for us.  My kids chowed down on berries, grapes, tomatoes, broccoli, and of course the roast turkey they fixed us for dinner.  We left early in the morning, but we had a great little visit and it was such fun to have Beth and David all to ourselves :)

50 States Before Graduation
2 Down (Virginia, West Virginia)
48 More To Go!!

Saturday, July 13, 2013

New CC Group

We're very fortunate in our area because homeschooling is growing, and so is CC! Our area was recently assigned a new community, and while it is very hard to say goodbye to our current community, because I'm still not driving and tire easily, it will be a great advantage to us to be part of a group that's not across town.  In our area, across town can easily mean an hour round trip. 

On Thursday night we were able to go and meet the new director, who is quite lovely.  I'm so excited to work with her over the next year or two, as she's military, so you never know when these wonderful people will be assigned out of your lives!

Going to the meeting on Thursday was a little strange for me because this was the first group of people I've been around who will only know me as an "after".  Our current CC group, for example, knew me before I was sick and loved me while I was in treatment.  They know the Kristina that still exists in my head, who loves to organize and coordinate and plan fun events.  They know Cycle 1 Planbook Kristina and Field Trip Kristina and Tutor Kristina.  Kristina who says "Yes" to everything.

Also, Kristina with hair.

This new group of people will only know post-tumor Kristina.  Kristina who gets tired and needs help and "can't tutor this year because I'm not sure if I'm up to it".  Kristina who says "no" a lot. I kind of hate this Kristina. 

I know that this Kristina is temporary, but it's weird to put myself in a group where I'm just an after.  Hopefully as the time passes, I'll get back to my old self- it's just on my mind.  I know first impressions are important.  There was also a friend of mine who came to the meeting to support a friend who is new to CC, and she asked me after how I tell people, which I had to admit, I didn't really know.  I've never spent time "introducing" my status to people before.  Usually they either know me and are aware of what's been going on with my brain, or they're strangers and don't ask.

Just more new experiences, I suppose!

Anyhow, the main point is that we're excited about our new community, but will miss our old one, too. 

Monday, June 24, 2013

On Worth

Getting better is really hard for me, not because of the physical, but because of the mental.  I am a huge "man up" fan, so dealing with the pain, while not fun, has been okay.  What really bothers me is not being "back to normal" already.  You know, because it's June and I had 16 hours of brain surgery in February, so really, what gives? I know that in the grand scheme of things I am doing way better than we ever could have hoped, but I'm not "back".  I want to be driving and taking care of my kids and my house and back to being myself.  I'm running my website again, which is nice, but based solely on the fact that my website can be done ahead in chunks when I feel good. I pre-post things to facebook/twitter/blogger and then it looks like I'm always doing well :) It's a good trick!

Today, the kids went to camp.  Riley and Logan are doing Cub Scout Camp, which my mom is attending every day.  I know that she loves the kids and she wouldn't do things if she didn't want to, but the fact that she's out there getting bitten up and sunburned instead of me gives me guilt.  Savannah Lynn is doing a skating camp, which I'm sure she'll love, but I've never sent my kids away for a week at such a young age, and I know that the party line around here (because my mom and Austin love me) was that "It wouldn't be fair" for Savannah not to get to do something fun, and not "you're incapable of being fun all day alone", but I know that she's really at camp because I'm not back to being a good enough mom.

It took me a really long time to feel like I was doing anything worthwhile with my life to begin with.  I'd always gone along with the "career first, family later" mentality and really got sucked into "you can be anything you want" idea- but that never included being a mom.  I tied my entire identity into grades and awards and my ability to "be" things and I wanted to have a job title that made me important, so when I had Riley, I struggled to not suck at being a mom and to still be "someone". I'm not sure how many Student Government senators have kids, for example, but I had to keep doing it.  I didn't even tell my professors I was pregnant with Logan until I was 2 weeks from my due date, and then only because one of them asked. When I finished school and started staying home full time, I really struggled, too, because I wasn't "doing anything".  I still felt like I had to prove myself and host more playdates, make sure that Riley and Logan were better at things, push push push.  It wasn't really until after I had Savannah that I had any kind of peace about who I was. 

I spent a lot of time in scripture after Savannah, and really prayed on the idea that my role could be helping Austin and raising our children and that those things weren't just sufficient, they were an entire calling.  It was a totally new perspective for me that washing laundry and feeding my family and loving my kids, when done for a purpose of pleasing God, was enough.  I was enough.  I didn't have to justify myself to anyone, I didn't have to fight to be important, in fact, my marriage got markedly better when I stopped fighting Austin for control of things all the time.  Shocker.  Anyway, that means it basically took me 5 years to get myself together and figure out that being a wife and a mom was worthwhile and that I could pour myself into that and rest in the knowledge that I wasn't just leaching oxygen from the senators, lawyers, and CEOs out there.

Now, because I can't even do that, I'm really struggling again.  Today, I made pretzels.  The kids were at camp, I felt pretty good, I decided to make pretzels.  It took me a long time because I'm still slower than normal- although nowhere near as bad as I was- and by the time I was done and cleaned up I was exhausted.

Today, all I did was make pretzels.

Is that worth anything? Do my doctors ever go home at night and think about what a waste of effort I must seem? Hundreds of thousands of dollars have gone into my care, and countless man hours in medical staff planning and operating and implementing and following up.  So much work and effort and money...

And today, I was exhausted by pretzels.

I've been trying to take advantage of my "time off" to really think about what my life should look like and what is really important in my days, which has been fantastic to ruminate about, but it's also frustrating to decide about what's important and what I want the structure of my days to look like and not to be able to do it- not to actually be able to implement those things in my days.

Soon enough, I suppose.  But, for now, if you'd like a pretzel, they're on my counter.

Summer Starts

 The kids have been a little bit of trouble over the last few days because they know their public school friends stopped going to classes, so being "forced" under "extreme duress" to continue to do their core work and some fun summer modules (mostly Astronomy- who doesn't love Astronomy??) is like pulling teeth.  However, from me being sick, we're behind where I want them to be, even though we're not "behind" at all, and so they're going to have to suck it up, buttercup.  Savannah, my big girl Kindergartner, however, is happy to do any work at all, anytime, without whining or complaining.  Especially when Grammy, who's still head teacher, is giving out lollipops :)
 Summer also means the beginning of swim team.  That means Saturdays start early and are spent outside hanging out between events.  The kids seem to have fun, and I love that they're in the pool every day.  I walked over to the meet on Saturday- 6am-12pm is too long for me still, but I got to watch the relays at the end, and I loved this picture of Logan and Savannah hanging out when I arrived.  I think Riley was still in clerk of course from butterfly or breast.  Logan and Savannah are a funny little duo.  Logan is actually a very wonderful big brother, protective, loving, and willing to include Savannah.  He's not, however, interested in competing with Riley for Savannah's attention, so he will actually ignore her or seem a little aloof when Riley is around and trying to get Savannah to like him better.  I enjoy seeing just the two of them because they are very sweet together.

Friday, June 21, 2013

This Week and Next Year

This week has been both good and bad- the steroids that the doctors at Duke put me on have made my head feel so much clearer and given me a great deal of energy, but they're also giving me joint pain and making it hard to sleep.  Today is my last daily dose and then I switch to every-other-day for two weeks, so I'm hoping that will cut back on some of the less desirable side effects.

Having less pain and more energy is nice, though! Yesterday evening I got to go out for a little bit with Savannah Lynn and my momma, which was just such a beautiful thing.  We stopped by a grand opening of a local store that had invited me out (I have another blog that people actually read, so sometimes I get to go to cool things!) and that was so neat because we got gift certificates for the salon we use in our swag bags!  My mom has been here helping out with the kids since the end of her classes in December, so she's not working and I know that's meant a lot of financial sacrifice on her part, so it was exciting that she gets a treat! If I had a million dollars it would not be enough to compensate her for all the work she's done with the kids, but I'd be happy to write that check!  After that, we ran over to Children's Place to pick up some essentials for Savannah for skating camp.  The boys are doing Cub Scout Camp one week this summer and Savannah is going to do one week of skating camp.  Children's Place is always having a sale, and they had thin-weight yoga pants, perfect for on and off the ice.  Plus, they have Savannah's favorite underclothes, and that girl is PICKY about undergarments!  I was done walking then, but we sat outside at Cheesecake Factory and shared some food.  It was a lovely evening to begin with, but the manager put the heat lamps on, and it was beautiful.

Sometimes I find myself waxing nostalgic after all of this.  How lucky am I that I can sit and feel the wind blowing in my face and watch my daughter smile at me from across the table? How very blessed to be here breathing.  Amazing.  If I've learned anything this year, it is to be thankful daily because the future is so uncertain!

Speaking of uncertain, we got an email today that Classical Conversations is opening a campus in our actual neighborhood instead of across town.  We already have two CC campuses in driving distance, but the one we belong to requires a 30 minute cross-town drive each Thursday, not to mention that most of the social events take place on that side of town, too.

I'm not sure how many families will switch, what building will house us, and the director is moving here from out of state, so I don't know what she'll be like.  I know that it will be nice to be closer to home, especially since I'm still not driving and am wary about it, but I also know that I already pulled Riley out of public school and asked him to adjust to CC, and I have guilt about pulling him to a new community.  I know that our friends from the other community will still be available, but I also know it makes it harder, and I don't know how many kids I'll be offering him in our new setting.  I also don't have a particularly high opinion of the way the communities function together- something I wish that was more collaborative than separatist, I suppose, but I'm sure the directors have their reasons for keeping very firm lines in the sand.

Anyway, so there's lots to think about now, and more uncertainty.  Just when you're sitting at dinner thinking you've got it all figured out....

Monday, June 17, 2013

Progression of a Head

Before my brain tumor surgery, I really wanted to see what I was in for.  Here's a little pictorial journey of my head and neck over the weeks as I recovered from my tumor resection, just in case you're also wondering "What will I look like after brain surgery", because I know I wondered.

This is after my initial admission at Georgetown.  I had Thursday (which I spend half of at Hopkins) to Wednesday morning (when I checked in for surgery) at home.  The kids had all been sniffly, so to avoid getting sick, we took turns wearing masks and everyone used lots of hand sanitizer.  My hair was long! 

 This is Tuesday night before surgery.  I was originally going to get an incision for a drain and an upside down L incision for the craniotomy, which Dr. Nayar was going to shave off in the ER, but I wasn't about that, because 1) I wasn't losing anything that wasn't on my terms 2) caring for weird hair with blood sounded gross 3) some cute kid with cancer is now blonde with long hair.

This is in pre-op.  If you're wondering how my husband was able to stand how incredibly sexy I look in this picture, the answer is self-control.  :) The pre-op nurses are very kind and upbeat, but if you go the shaved head route, note that those little blue caps will not do much to keep your head warm, and it is COLD when you're used to having hair. 

This is Ron, one of the best nurses ever, and I still have the drain in my head, so I know I'm still in the ICU and it must be pretty early on.  Note the pink line of goop coming out the top right of my head- that's the drain.  My neck is almost the same size as my head.  Swelling is a good time :) 

 This is when the kids came to visit me for Savannah's actual birthday.  I had the drain and the catheter out (whoohoo, did I mention you get multiple drains? It's okay, you won't want to walk the first day anyway if your surgery is as extensive as mine, although I hear that my roommates who had menengiomas removed skipped out of the ICU on day 2, so if yours is more like them, you'll be peachy 24 hours later!) You'll notice I look like I am completely out of it, and I was.  I actually don't remember this day happening at all, thanks to Valium/Morphine/Whatever Else They Gave Me.  I wore a hat so I wouldn't scare the kids with the back of my head, and I apparently had a hard time moving my neck at all, so I turned my whole body.  My neck is a little smaller, though! My neck mobility was because they had to operate into C1 and C2, not because of the actual craniotomy itself.

I left the hospital after 8 days, and I want to say this is day 10 or so at home.  My neck swelling went down pretty substantially, but the actual incision looks much angrier and gathered up.  I was totally off IV pain meds by day 6 when they moved me to the stepdown (I believe) because they told me I needed to be able to hack it with oral medication if I wanted to go home.  In retrospect, I was pretty miserable at home and probably could've stayed a few more days in the hospital, but I hate admitting I need pain meds and I missed my bed, and despite having great care and nurses, I wanted to go home.
 I had my stitches out on February 20th.  I know that, because it was my birthday.  My hair is growing back, which is exciting! This is actually just a few days later, I want to say it's the 25th or so, I went back to the ER for a possible infection, which I ended up not having.  Looks pretty good considering what I went home looking like!
 This is not cute hair.  Not at all.  However, this is right before starting radiation treatments at Duke, putting me about 7 weeks out from surgery.  My hair is covering up most of my scar, and it's getting lighter!
This is the end of week 4/beginning of week 5 of radiation.  If you look at my neck you'll see my scar is very light and doing well!  My hair was back and pretty thick, too! However, I did start losing my hair in the radiation pattern, so I decided to cut it off again because having a bald spot was weirder than being bald!  I have two thin stripes missing about 2 inches above my ears on either side, and I'm not sure if they're going to grow back in, but they're only about 1/2 an inch at the widest, and my hair (now 3-4 weeks post radiation) is growing back over the top, so I don't think anyone will be able to see them.  The back is growing in again.

While the scar is healing nicely, and my hair is growing back, I will mention that is still HURTS back there.  Not on an everyday basis, mind you, but my neck gets sore after "a spell" of laying any particular way, and laying flat on plastic is painful pretty quickly still.  I realize that sounds like an odd complaint, but when you have a brain tumor, you get a lot of CT Scans and MRIs.  My last MRI (I think I complained about it already) was incredibly long, and it really does get hard to focus on anything but the pain laying on the incision on plastic or four hours.

This is me at the end of radiation.  I can move my head and neck really well, my skin is obviously less than thrilled with me, but I was doing really well!  I have another check up at Georgetown tomorrow with my neurosurgeon and my oncologist, and I'll try to get a picture of the back of my head so I can add one more view a few months out from surgery.  I think I've healed really well, and I'm happy with the progress I've made in Physical Therapy (and out- I took my worksheets home and actually did them, and they help a ton!) and I hope that seeing how fast you can actual heal is encouraging to someone else!
This is from today (June 17th), so we're one month and two days out from radiation, and 4 months and 12 days out from surgery.  I think my incision looks really really good!  My hair is kind of funny, you can see the radiation on my neck gave me some alopecia, too.  I actually didn't wear a hat today (or for a few days) because when I feel the back of my head, I feel hair in that giant bald patch! Austin pointed out to me today that I'm still super bald- he thought I was just "owning it" and rocking out the bald spot! I thought that my hair had grown back in some and that it wasn't quite so obvious! Whoops :)

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's not me, it's the roid rage.

Thursday, June 6, 2013

Planning for Classical Conversations Cycle 2

I can't believe that next year will mark our third year homeschooling.  I know it seems dramatic, but being sick made me realize what a gift it is to be home with my kids.  If I'd spent the last year and a half before I died being home with them and teaching them, I would've been completely happy with that.  Since I didn't kick the bucket, however, it means I get to head into my third year knowing how special my time with them is, and what a privilege I have being able to homeschool.  It also means that since I'm still a little slower and a lot easier to tire than in the past, I'm reconsidering how we're doing things around here.

Classical Conversations has been the hinge our homeschool opens and closes on.  However, I've spent lots and lots of time expanding the memory "pegs" into a full curriculum, spending hours on Pinterest, Google, and at the library ensuring that I have enough information to fill in the blanks.  Knowing that I have good days and bad days, I'm planning to spend more money this year to provide myself with all the tools and plans I'll need so that if I have a bad day, everything is already prepared.  That seems to be the trade off in homeschooling, you can either spend more time preparing or more money preparing.  This year, I'm picking time saved over dollars saved.

I am still incredibly happy with our Singapore Math.  Savannah completed the Kindergarten A book this year on her day off from preschool (she had preschool M/W/F half days and CC on Thursdays, leaving just one day a week for homeschool). She'll start Kindergarten B this summer, and then we'll move her up and along when she's ready.  Logan is right on schedule, and will complete his 1B book in the next week or two so that he can start 2A in the fall, using a summer review book over the "break".  My first year, I purchased the teacher's guide, but I don't do that now, opting just to purchase the textbook and workbook.  I let my kids write in both, but certainly you could not allow them to write in the text and just order a new workbook each year.  I don't really feel like for the Singapore price you save much money photocopying every page--especially with our printer which eats ink like it's a contest.  Riley had a bit more of a pause this year as he struggled with multiplication facts, but with some work this summer to finish up his workbooks, he'll probably start 4A in October.  I'm not particularly concerned, because aside from mixed numbers, which is in the second portion of his 3B book, he's hit all the grade 3 SOLs and just a few of the grade 4 ones.  I always like to look, just in case there's a crisis and we have to send them back.

So....Math is staying the same.  Singapore makes me happy.

English wise, Riley will start Essentials, which is through the Institute for Excellence in Writing's Essentials of the English Language.  We'll continue all three kids with First Language Lessons and Writing with Ease for the younger two. I started these this year, so they've got plenty more to go.  Savannah will have the advantage of starting when you should actually start!

For science and history, I am going to go with Sonlight C (we'll have to circle back on world history for cycle 1 in two years) and I think I'm going to get Sonlight Science B (Animals, Astronomy, Physics), but I'm not totally sold on that one as much as I am the history. 

I feel like Riley should really start a Latin program....but I'm not sure I'm mentally there yet, but I'm trying to get a feel for what people like anyway.  I never took Latin, so I'm excited we can learn together.

What are you using next year? What's working and what's not?

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.