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?