Wednesday, January 22, 2014

Had a better day!

Alright, after my embarrassingly crumby ending to yesterday, I am happy to announce that today was definitely a better day!  I woke up at 5:15am (still can't sleep well for the life of me) and just hung out on the couch by myself until Jacob woke up at 7am and Owen woke up shortly after and we all snuggled up and watched a movie.  For some reason both the boys wanted suckers this morning... Jacob is now the king of just going into the pantry and helping himself to whatever.  Normally I would say no to suckers at 7:30am but today I just didn't care and they looked so cute eating them.

Wednesdays are Jamie's day to work from home and drive me to appointments, SO nice to have him for the day.  Both boys are supposed to be at school/daycare on Wednesdays but today just Jacob went as we are keeping Owen home all week to just give him extra time to adjust to his new medications.  So we dropped Jacob off at daycare and then Jamie and Owen dropped me off at the Cancer Clinic for my neuropsychological testing.  Actually felt good to get showered and dressed.  I can fully admit that I have been LIVING in black yoga pants and slippers so just putting on a pair of jeans and boots really helped my mood. 

See... really, I was in jeans and boots!! Oh la la! 
 FYI - the boots are from Kohls.  They were a Christmas gift from my sister in law Lindsay.

Guess I could take it upon myself to get dressed once in awhile even if I am just home for the day.  :)  This was my first time going to an appointment on my own.  The testing was going to take about 3 hours so Jamie and Owen just went back home.  I was slightly nervous to be there on my own and hoped that my mind wouldn't wander but I did really good.  The testing was actually kind of fun.  I LOVE puzzles and mind teasers and this was basically what this was.  

 They did things like give me these cubes with colors on each side and you had to recreate pictures, I could do this stuff all day long!  There was a bunch of memory stuff, like the woman conducting the test would say 12 words really slowly and then I would have to repeat back as many as I could.  She would say anywhere from 2-6 numbers and I would have to repeat them forward and then backwards.  There were these blue blocks and she would point to them in a specific order and I would have to repeat her pattern  and then I would have to do it backwards.  There were a few times I messed up simply because I wast thinking in my head "man, Jamie would be TERRIBLE at this".

The testing lasted about 2 hours.  Then I had to fill out some paperwork that totally needs to be improved.  It was definitely about checking in on your well being but it was basically I am totally fine and having no problems OR I need serious medication and suicide watch.  For instance the first question went something like this
I am 
a. never sad
b. sad ALL the time
c. so sad I can't function
d. so sad i have had suicidal thoughts.

Umm... how about I am doing okay but have some shitty days?  Why isn't that an option?  There was like 4 pages of questions just like that with no in between answers.  Actually made me feel kind of good because I confidently answered them all that I was doing okay.  I still enjoy doing stuff as much as I always do, I still can communicate, I have energy, I still laugh and smile. Pretty much after every questions I answered, I heard the phrase "I GOT THIS" getting louder and louder in my head.  

Then there was a survey about your support system.  Questions about if I have people to talk to, if I have people helping me and man I just felt SO happy and blessed as I filled that out thinking about all the amazing friends and family AND strangers that have so generously reached out to our family.  Thank you to EVERYONE once again!  I was thinking of every single one of you as I answered each question on that survey that YES I have support and help and encouragement.

So once I was done I went back into the waiting area and had to wait for maybe 15 minutes.  I kind of took in my surroundings there, when you are with someone you chat and I try not to look around or even think about where I am.  Today it was just me and after I placed the order for a new shirt from the Gap for Owen and I to wear for photos next week I sat and looked around.  The Cancer Clinic is actually really nice.  Every person that I saw was smiling and happy, the sun was pouring in the windows, the snow was falling down and I realized, this is a nice place, a healing place.  A place that is going to play a big part in me getting better.  And then my phone chimed and it was a text from Jamie asking what the hell I had just ordered online.  Stupid online banking, anyone else have a husband that sees that crap so fast.  Good thing I ordered him a few new pairs of boxers too, always helps when there was something for them too.  :) 

So then the doctor called me back for my results....  
drum roll please....
I scored a

I don't know why but I thought this was so funny when the doctor said it.  So funny that I got the giggles.  A strong average, just sounds so .... average.  Like a C+ with a really emphasized +.  The doctor clearly thought I was offended by his wording as he proceeded to draw me a diagram of a grading curve and explained that if they tested 1,000 people so many of them would fit within the curve and that most of my test scores were at the high end of the curve.  I just couldn't stop giggling still.  He told me that my memory scored super high which was great and that they see absolutely NO sign of this tumor having had any effect on me.  There was two areas that I scored low on, the first was my left hand fine motor. I had to put these little pegs into a holes and even though they account for me being right handed, my left hand was still slower than it should have been.  Could have nothing to do with my tumor though.  The other thing I did terrible on was the number repeating.  I told him it was because I didn't know how many numbers she was going to say so I didn't know how to prepare.  If she had said I am going to say SIX numbers I would have remembered 3 and 3 or something she just started and you had no idea where it would end.  Whatever, numbers aren't my thing anyways, or geography for that matter but that wasn't part of today's test.  

So I go back in June for a re-test, about 4 months after I finish my treatments.  June... it will be warm!  I look forward to that.  He told me NOT to be alarmed if I score lower in June and if I am noticeably slower at stuff right after my radiation.  He explained that radiation really takes a huge toll on your body and that your body needs time to recoup and recover and that deficits you see right away are just from your body being so EXHAUSTED and not because you lost skills.  There is definitely the risk that I can and will slow down a bit, have a harder time recalling memories or words but that it should not be too noticeable.  He said he assumes I will come back in June and score about exactly the same.  He said the fact that this tumor has really had NO effect on me thus far could very well mean that it has been growing for a very long time and slowly pushing it's way around and causing things to reroute or just pushed healthy brain away so gently and slowly that it wasn't affected so if we can just keep this dumb tumor in check and keep it from growing we should be good.  I like that talk, tell me more about this good stuff!  Unfortunately he had another patient waiting for him so he couldn't pump me up with this good info for hours on end.  So I called Jamie and told him to come and pick me.  

Him and Owen came and we went on a lunch date to Cooper's Hawk Winery at Brookfield Square.  It's our new favorite place.  We eat in the bar, it's full of natural light (I just crave natural light these days) and the food is amazing! Owen ordered and ate a full bowl of tortilla soup, he's so funny with the food he likes. 

Then we got home and spent about 4 hours trying to straighten out insurance stuff that is STILL not figured out!  SO annoying, I have enough seizure meds to last me through tomorrow morning and our 4 hour conversation today with insurance ended with our file being put into a medical emergency status which means things should be cleared up within 24 hours.  Not sure why this wasn't done last week when we called.  Thankfully Walgreens filled a one week prescription of my meds for free until this gets figured out and that free refill ends tomorrow morning fingers crossed this gets resolved.  

Then this evening we had Owen's open house at kindergarten.  We walked into the gym and they were playing a video with a song that I used in a photo slide show for Owen's first birthday and I saw a mom from Owen's current school and so of course I started to cry.  agh!  But the open house was great.  Jamie and I are SO happy and excited for Owen.  He is going to do SO well in school next year.  They actually separated the kids for most of the hour long tour and Owen got to go to music, art and library.  We ran into him a few times and he was smiling and interacting and was just one of the kids. I just can't even begin to express the amount of pride and love I have for that kid.  To see him just being one of the kids after everything he went through last week to seeing him laughing and washing his hands in the art room talking to some little girl I have never seen before.... I just don't even have the words to describe how proud I am of him.  He's brave, he determined, he's sweet, he's courageous..there is nothing he can't do. 

So it was a great day!  Tomorrow I plan to have another great day and I am going to spend the day just playing with the boys!  That is on my agenda.. no laundry or cleaning.. just playing, chasing, puzzles, tickle fights, trucks, play-doh, whatever they want to do... that's what we will do!

AND... some special thanks I have to give our today!
Thanks to my sister in law Niki for watching Jacob while we went to the open house.  Thanks to my cousin Lisa for the AMAZING dinner!  Can't wait to eat the pumpkin bread in the morning!  Special thanks to Amy L. for reaching out so much in the last few weeks.  It was so great chatting tonight and I will definitely be taking you up on the ride offer! Also thanks to Erica and Jake who gave the boys both Superhero dolls, Owen is sleeping with his tonight and some super yummy meals.  SO sweet of you.  Both of the boys LOVED the dolls!

WOW... this was a long post!  Jamie's is a very slower reader, I better hurry up and publish this so he can start reading if we want to go to bed within the next hour.  :)

ALSO - HUGE thanks to everyone that reached out to me yesterday and today to lift me up out of the hole I put myself in.  Thank you, thank you, THANK YOU!!  

I have lots of emails and messages I will start responding to during the boys naps tomorrow! 



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