Three Hundred and Sixty Five Days Later

Year one

I still can’t believe it’s been a year since Brinley was diagnosed with leukemia. It’s been a tough year to say the least.  As a family we’ve grown, and been there for one another, sometimes to just make it through a few hours, and sometimes those hours ran into weeks and months, and here we are, a year later. I find myself more emotional when I think about those crucial moments in learning that Brinley has cancer, more emotional than I did a month after the fact, or even the day after, which I can’t only describe as shock.  For a moment, I stepped out of myself and put my words down, and when I go back and read it, I can’t believe the stuff that poured out, during such an intense and vulnerable time.  Here is a link to my very first blog which kicked off this whole healing process for me.

http://mpawluk.blogspot.com/2010/12/in-begining.html

I know it was dated Dec 12^th, nearly a month after she was diagnosed, but it was written November 20^th, I guess I didn’t have the courage to, “put it all out there”. Moving on…

I’d like to go over what I’ve learned in the last year, because after all, as much as I hate to admit it, this has been a very educational time for me as well.

(this part has been written on and off over the last few weeks, I find myself being emotionally raw from time to time, and I have to take a break and pick up where I left off)
I’ve learned that a place of disbelief and shock can engulf you completely.  The shock comes as a dull feeling, and your brain can only process little bits at a time, I often found myself re-reading notes taken at the conference the day after Brinley was diagnosed.  Catching up on “what I missed” sure I was there, in body, but my mind wasn’t. It was locked away in the steal vault of, “you’re not strong enough to process this now”.  The brain is a funny like that, it’s almost as if it says, “you sit, be calm, I’ve got this, and when you’re strong enough, go ahead and take the reins”. And sure enough, when the shock fades, then you get the experience the joy of fear, guilt, anger, and helplessness.

The fear is something I don’t dive into too much; I guess I’m fearful of fear…imagine that!  I try not to get my brain wonder there, but it happens, I’m only human.  Fear is something that can be very sneaky, and it only really shows its face when my guard is down.  Like when I’m snuggling with my daughter, and I think, “I’m so grateful I can snuggle her…what if I couldn’t? What if she relapses and then its game over?” or worse off “what if she dies?”  It’s something I’ve never said out loud, the words scare me, but it’s such a reality that it can’t be ignored for long.  Of course you can’t show your fear, especially around your child.  We’re supposed to be the brave, invincible parents who aren’t afraid of anything.  We hope that if wear that mask on the outside they will mimic the same fearlessness. Deep down lurks a completely dark and different feeling.

Guilt is something I haven’t spent much time on, in the beginning I did.  As a parent, I’ve wrecked my brain over and over “what could I have done differently?” But the facts are there, leukemia is not a cold or virus, it’s a disease, and you cannot prevent it.  Basically we were dealt a crappy hand, and now we have to make the best of it.  I have comfort in knowing that we are giving Brinley the best care we can, and that her health will always been a top priority.  But the days when the fevers spike, and her blood levels drop I go through my brain, “maybe I shouldn’t have taken her to that park? Maybe I shouldn’t have let her swim for 5 hours, maybe I should pull her out of ballet” some form of guilt will always be there. 

Now anger is something I have experience with. I’ve been angry a lot in the last year.  Angry, bitter, pissed off, irate, enraged, however you want to spin it, I’ve felt it.  Angry because cancer can cast a shadow on everything, it can cloud your vision and take over your whole mind.  I’m also pretty sure anger and fear are best friends because when I experience one, the other quickly follows.  Anger usually takes place when I least expect it, and more so on chemo days. I hate going to the hospital,  I hate that something so abnormal, has become normal to us.  I should NOT be taking my 4 year old to cancer treatments; I should be taking her to the park, or to dancing.  I’m angry at the fact that she’s completely unmoved by what has become her normal routine in life (grateful at how she handles it though!!)  I hate pacing the halls waiting for her to wake up from the anesthetic; I get angry at the “hum drum” of it all, when I just want to scream.  I'm angry at the pointing fingers, the invasive questioning I get from complete strangers, and the school yard giggling has often moved me to tears.

So now that I’ve ranted and raved, I should probably jot down a few not so important things I have learned this year as well.

      -  It doesn’t matter what time of day or night it is, it is always a good time for spaghetti when you’re on steroids.

-          To avoid nervous break downs, sometimes you have to give up control.

-          You’re true friends will always be there to listen and take some of the load off, no matter how much you resist and want to say, “I got this” you don’t, stop kidding yourself…and it’s ok.

-          Don’t forget the magic cream…ever

-          Have a pen and paper out ready to take notes when you’re roided up child is about to go into surgery.  The “what I want to eat when I wake up” list can be exceptionally long…and don’t skimp on the food.

-          Spend a little time on yourself when it comes to the hair loss. You spend so much time and effort teaching your child how to cope that when the day happens, you’re the one left sobbing in the bathroom de-clogging the drains.

-          When Brin wants “pizza” it means she wants “meat” just buy the meat and forget the $20 pizza.

-          Brinley can eat with both hands, at the same time.

-          I want to be like Brin when I grow up

-          20 hours of sleep is completely necessary

-          Grow a bigger internal voice that says, “yes I can” to override the one that says, “you can’t”

-          Being tired, weak and in pain is common, invest in a comfy compact stroller.

-          The more Brinley knows about her illness the better she copes.

-          Don’t dance around the subject, “Hi my name is Brinley, this is not a haircut, I am not a boy, I have cancer, and my chemo made my hair fall out so it’s growing back” is a perfectly good introduction to inquiring minds.

-          I find humor in the strangest moments. “maybe I’ll hang a sign around her neck that says, it’s not lice, it’s not a haircut I have cancer, just so people stop asking”

-     2 hands are make a fast thinking puke bucket
-          Surviving is not the same as coping.

I’m sure this list will grow in time; we still have another year to battle big bad leukemia.  Brinley’s off treatment day is January 19^th, 2013, provided she remains fighting and on the right path. It still seems like yesterday I was bundling her up in her red down winter jacket and rushing her off to the Children's hospital.  I will never forget the look of panic that came across Blake's face as he did the forbidden "web MD" symptom research, "Morgan she has all the early symptoms of leukemia".

 As much as I’d like this cancer gig to not be part of our life, it is, but in a much smaller light now.  We’re no longer consumed by the treatments and hospital visits.  Brinley is able to lead the normal life of a 5 year old. She is in ballet once again, and in a class with 6-7 year olds due to her past experience.  She will be going into soccer when the season starts and after she’s had her IVAD removed. In Arizona they remove the central lines as soon as front line treatments are over, so they were shocked to learn Brin still had hers in.  After talking it over with her, she’s decided she would like it taken out.  This means we’ll have to start to strengthen her veins with practise IV’s.  I’m not banking that this is all going to go over well; it’s going to cause some issues because she’s terrified of needles. But maybe if they are gentle and show her there’s nothing to be afraid of, she’ll go for it.  Or maybe she will freak out and call the whole thing off. I’m just happy she’s willing to try.

Tuesday Brin will be having her first LP in the US.  It’s going to be different considering she has blood counts done the day before surgery so everything is ready to go once Brin arrives Tuesday.

And finally, my letter to Cancer:

Cancer,

I could start off by telling you that I hate you, I could sling insults, and accusations, but not today.  You’ve changed my life, and my perspective of the world.  You’ve given me the gift of compassion, and empathy; you have made me stronger.  I’ve had to watch my 4 year old daughter go through pain, and anguish, and you never gave me the ability to take any of it away.  I was a spectator to my own horror show, while you tried to do your damage.  I’ve lived through your nightmare for a year now, and I've grown and evolved because of it.  I now know your tricks, and I’ve built up a wall around my daughter to keep you at bay.  The next year I will fight even harder to make sure you are banished from her body.  I wish that would be the end of you, but you will find your way into another body. I hope they fight you as much as Brinley did, I hope that you are less and less successful on wreaking havoc on the lives you touch.

M.Pawluk