Thursday, October 31, 2013

Grrrr....

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.

Fun.

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)

Math
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
Handwriting Without Tears K, 2, and Cursive 1

Typing/Computing
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 Starfall.com for her computer time

Science
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.