Wednesday, November 27, 2013

Cookie Cutter Kids

My daughter is a competitive cheerleader and loves it!!  Cheerleading has come along way from pom poms and raw raw raw.  It's crazy stunts with amazing tumbling all synced together to form an incredible display of hard work, discipline and love for the sport.  These girls work hard for 10 months of the year to compete a handful of times over 3 months.  The combination of dance, with gymnastics and meticulously counted stunts of small humans flying through the air is a site to see.  That all beings said these girls practice and practice a lot.  Our club has amazing coaches who spend their life at the gym working these kids to perfection. They have planned what they hope to be a winning routine and need the kids to give 100% every day they are there.  Well, we are talking kids here and last night as I sat and watched practice I was within seconds of leaving and sitting in my car.  I love watching them practice, I am amazed at how quickly these girls learn, I just wish they would listen to their coaches.  Almost every practice my daughter get a chat in the car about how important it is to be quiet and listen to them.  I'm sure she get sick of hearing it.  Last night the pressure in my head, like today is almost unbearable.  Whatever this rain/wind storm is, is NOT good for my poor little head.  So, last night I just couldn't deal with the noise because my head was going to explode.  However, this morning I thought about how many times the coaches say stop talking or blow their whistle and if I were a coach I would be crazy by now.  I said to my daughter last night if I were your coach you guys would spend half your class doing conditioning when you don't listen and maybe then you would realize how serious you need to take this.  Her response, "that's why you are not a coach".  Welllllll, actually my dear I'm not a coach because I was never a cheerleader and I'm sure a cartwheel or round off right now at my age and health would have me in traction, but I am a mom and I am an adult and you guys lack respect for your coaches by not listening. Have you noticed that you all get really quiet when you are made to do conditioning because you were all taking, again If I were a coach you'd spend half your time doing sit ups  As you can imagine the ride home was all about respecting their time and doing what you are told I'm sure she heard blah blah blah as all teenagers do.  So what is the answer, do I take my poor tumour ridden head and go to Tim Hortons where it's quiet and has hot tea.  Or do I stay and watch as I love to do and suffer it out?  I sit and suffer it out, because every time I go I am blown away at the athletics I see and I'm proud of my daughter's accomplishments.  So what's the answer to get 30 teenage girls to stop talking and listen?  HA, wouldn't every parent, teacher and any other person involved in mass teaching like to know?  Promise them a win, maybe some cookies? Nope, don't promise them anything, teach them respect.  Something that has been lost in our generation of parenting where we all feel that we need to undo the parenting of the past.  Parenting through a brain tumour sucks, I'm tired, medicated, in pain and cranky probably more times then not. However, there is no choice in my world but to try and teach them that respect will get you  through life further then disrespect. I don't want cookie cutter kids, I want kids who are not afraid to express themselves, their opinion and their rights as long as it's done with respect and if possible, quietly..... very, very quietly  :)

Thursday, November 21, 2013

The Big Black Cloud Called Anger

I think it appears as if I'm mad.  Several comments from people who love me are indicating this.  One in particular said you know what I hear when I read this post (Ahhh what a good little tumour)?  I hear GRRRRRRRRRRR......... I think  "Hmph, Pffffft, now I am GRRRRR".  So I reread my post from yesterday and yes it's true I am a wee bit mad at my lack of control in this whole situation.  Maybe I'm just mad that I have a brain tumour, but perhaps it's time to seek some professional counselling to deal with the trauma to my head but more so the trauma to my soul.  I think when your soul, your inner being, your primal connection gets angry, you create an aura of a nasty black cloud, and little frigg'n wonder I say, but it's not a place I want to be and I, yes I, can control that, so I will!!!!

Wednesday, November 20, 2013

Ahhh What A Good Little Tumour

Results are in, no regrowth.  As you can imagine that is the best news someone with a brain tumour can get.  I kind of figured as much as I didn't get a call the day following my MRI, at least the no call meant nothing drastic was going on in my head.

Dr. Mulroy is a kind soul who is suited for what must be a draining job.  He answers all our questions, shakes your hand and a feeling of genuinely wanting to be in your presence is evident.  A rarity in the Doctor world I find.  So if I have to have a radiation oncologist I'm glad it's him

So here is how the appointment went.  He said there was no change, which is good, and then some silence.  I immediately pipe up and said I'm sensing a "BUT"?  He very quickly said, there's no "but" it's good and showed us the comparison of my last scan to this one.  I like to see my scans, it's my tumour and I want to look at it.  He said that if the tumour was acting up I would have symptoms of tingling and/or numbness in my face or diplopia (double vision)....UMMM I have those, they are wonderful left overs from my surgery.  Hmm yes, yes you do was the response I heard and again he said that those are the things we would look for if the tumour was growing.  Brain "shut down" happened as I try to process this information...well if this is what you look for and I already have it...then where does that leave me.  I know that T Jay is asking questions but I have no clue what it was as I come back into the reality of "pay attention Kelly"  He said that he thinks we should adjust and change medications to try and calm the trigeminal neuralgia down.  Now the great news about having about only 95% of the feeling on the right side of my face is that I get shocked many times a day but prior to surgery the shocks to my face would have been about a 12 out of 10 on the pain scale.  Now they are about a 4/5, certainly a pain that's highly annoying and lets face it, they suck, it's exhausting to be snapped in the eye and teeth over and over again every freaking day but face numbness has been a benefit here.

So ok great lets increase and change the meds.  Since I am highly sensitive to meds we will do it 100mg a week AGAIN until things are under control.  Cool, I'm good with that.  Now, since there is no change in your MRI I think we should get the meds under control and then chat about radiation in the new year, as starting anything now this close to Christmas...........................and that was the last thing I head for a few minutes.  A Charley Brown whaa whaa whaa whaa whaa moment kicked in as the dreaded Christmas word has once again come into play in my life.  Now don't get me wrong do I want to jump on the radiation train full speed ahead?  Umm NO, but how my type A personality works is this...very simple...Kelly has a brain tumour, not all of it was removed, the hospital has radiation, if the hospital zaps Kelly's tumour, Kelly is all better and we just move on getting life back to normal, Kelly is fixed.  Doesn't that sound right?  So as the lump forms in my throat and my face feels like it's so red it's purple with frustration.  I can't stop thinking "why Christmas, why do you hate me so much"  I'm now back listening to T Jay and Dr Mulroy talk and I hear, that the radiation odds are only about 30% for relieving my symptoms....umm what?  What happened to my theory of zap, fix, move on?  I hear that he will call me in January to see how I'm feeling with the change in meds and we will look at the radiation either then or after my next scan in May.

Next comes what I like to call the "sobriety test" walk in a straight line, then heal to toe, close your eyes, all the things that I spent months at the Balance and Dizziness Clinic perfecting.  I've got this I think, watch this...I stand up and what happens, I stumble, like a drunken fool and I instantly am mad at myself for not being able to show off my new and improved skills.  I suppose if anyone is to see the fact that you still tip over it's your Doctor but we all want to prove how good we are at something.   I do however, feel the need to say that I've gotten so much better because of the help from the Clinic.  So once again the brain vs. Kelly didn't go my way and the brain decided that it was at that exact moment to do the two step.  grrrr

I ask about work, life going back to normal, when when when, and basically state that I'm done with this recovery thing and don't ya think this is a bit excessive?  I was told 4 to 6 weeks I'm almost a year out and seriously what's the deal?  Some people take longer is what I hear and he has seen people improve even up to two years.  OMG is what I think.  Ok so work...lets get back to that, you are not ready is what I hear, you are still recovering and you need more time.  Lets give your brain  more time to heal.  OMG is what I think again, time time TIME TIME and then I can't take it anymore and the water works start.  The blubbering about time and my frustration with this whole thing is beyond and that I love my job and I miss it, and I feel there is a big part of me missing.....But you are not ready, is what I hear and a Kleenex box is gently given to me.   We will talk in January, lets see how the meds do and you are not resting, you need to get a restful sleep, I will send a letter to your family doctor...hang in there.

So, the great news, no regrowth, the great news, radiation on hold, the great news it's still a slow growing benign tumour.  The bad news, radiation is still in my future, the bad news is I still have a brain tumour, the bad news is it's still going to grow and now matter how much I play the Kelly vs Brain game, it's always going to win.  I realize that I am lucky that it's not cancer, I count those blessings everyday.  I do also realize that because it's not cancer, I have the luxury of waiting, hanging out in the system, a place I like to work in then go home, now I feel like I'm living in it, from home.  I am however, proud of my little tumour for behaving and not growing, if I have to have one I want one on it's best behavior.

The image below is my head, basically cut in half, the tumour is on the right, images are reversed on MRI's.  As you can see the white blob is what is left of my tumour, a MUCH smaller white blob then I had.  This guy has a nice little grip on my cranial nerves and is hanging out with my carotid artery making it "inoperable".  So I say ahhhh what a good little tumour with a slight sarcastic tone as he has taken up house in a crappy location but as long as he doesn't take out a mortage to add an addition he will remain "a good little tumour"

Tuesday, November 12, 2013

Maybe I'm Over Thinking It

Halloween, my favorite time of year.  I had a blog post all written and with all posts, I have to read and reread it several times as I miss words a lot.  The post was all about how this year was very different with both children heading out trick or treating with their friends and suddenly I found myself in a position I was not used to.  They didn't "need" me.  A sense of overwhelming sadness and a sense of pride of two well rounded children growing up into teenagers had me with conflicting views in my head.  The post was also a bit of a pity party of how I wasn't really able to fully enjoy Halloween this year as I am one of those nutty folk who love to over decorate for the occasion.  Just as some of you do for Christmas.  Then before I had a chance to hit "publish" to my blog site my cell phone rang with a sobbing child on the other end, she had sprained her ankle in gym and could I come get her.  This ankle has been trouble since she was 5, this being her 4th good sprain on the same side.  Of all the days, Halloween when they travel door to door getting handfuls of treats from complete strangers (everything we have taught them as parents not to do, except of course on this day), she was now on crutches.  Her pack of friends, slightly bent out of shape that she was not able to join them had her in more tears then the ankle.  My heart as a mom was aching that she was not able to go out for Halloween but also aching for her as she was realizing that friendships are measured in groups at this age and not as individuals.  She was not able to be with the group, and nothing more could be done about it.  So Momma sprang into action with the aid of Auntie Laura and we took her to as many houses as we could find that did not contain any stairs (not an easy task around here).  One of us would carry her treat bag as she hobbled up on crutches to claim her Halloween candy.  People being overly generous when realizing that the crutches were not part of her Football player costume.

So I guess Momma was needed after all but this of course was not how I wanted this to go down.  I'm happy to report that the ankle is feeling better and the Halloween candy was devoured in a matter of days.

My favorite activity (the MRI machine) was scheduled for Monday after Halloween.  On our way there I got a call that it was cancelled due to the machine breaking.   Really, not a surprise as luck is not normally on my side.  It was later rescheduled for the next day.  I'm getting better at it, as this time, the Techs asked me to move my toes to make sure I was ok.  I always think just stay still so they don't have to redo any pictures, the less I move the quicker I can get out of this tube.  I now close my eyes from the moment I lay down and as they slide that cage like thing over my head and pad the sides, my eyes stay shut as tight as a clam shell.  When they pulled me out to inject the dye, my eyes remain shut.  She asked me if I had a phobia of needles, inside I chuckle to myself, and with eyes still closed I say "no, I'm a Phlebotomist I just hate MRI's"  and with that and some dye racing through my veins I'm glided back into the tube.  It always seems like it's a long way in with your eyes closed, one day I'm going to get brave and look, maybe next time.

My phone didn't ring the very next day like three MRI's ago so I am going to take that as a good sign.  I will however, know more on the 19th as I'm back to see my Radiation Oncologist.  Looking forward to the results actually.  Well perhaps that's a stretch...I'm hoping for no change, I guess if you have to live with a tumour you want to live with one who has learned to behave itself and just hang out.  With this change in weather however, my tumour throws temper tantrums and I can't seem to get this toddler under control.  It's truly one of the most frustrating things to know that your brain controls your body and all you have to do is think something and you can make it happen.  It can be simple like move your arm or complex like drive a car but your can't think your tumour out of your brain. I've given up on this Kelly vs Brain battle as control is something we don't have, at least I don't think we do.

Sunday, November 3, 2013

The MRI Prayer

T'was the night before the big MRI
Not a creature was stirring but I did let out a sigh
All the papers were in order
Tucked well in my purse
Hoping tomorrow will not be a curse
I'm praying the tech's needle, has no pain
As the contrast die travels through my veins
I picture it surrounding my tumour and brain
Hoping there is nothing more I have gained
A no change MRI is all that I ask
As I prepare to be fitted for a radiation mask
The next chapter will start on a totally different book
I have no choice, I must take a look
So tonight in bed when you say your prayers
Perhaps you could slip my name in there.