Tuesday, June 28, 2011

Single Digits

For the last 2 months the kids and I have been counting down the big family trip.  On July 6th we will be traveling to Disney world with my parents. As the day draws closer we all get more and more excited for this vacation.  It's been over a year since Blake and I have been to a destination vacation, 2 years sicne we've taken the kids on a vacation to Arizona, and a good 6 years since my parents helped us move here from Arizona...so I'm not sure you can even call that a vacation!

Next week Brinley will go back to the hospital for her second round of chemo in maintenance. She'll have blood work done, and go for vincristine which is usually a 10 mins IV drip.  She also will be on those lovely little steroids once again, but only for a week.  The last time she was on DEX the mood swings hit her pretty hard around the 2nd day, the eating however didn't kick in until the week after, when she was off of the steroids.  So according to my calender, her mood swings should be tapering off the first few days we're in Disney world but then the eating will be full effect while we're there....lots of eating...in happiest place on earth.

I really hope this next dose won't put her out of commission for the week we're there.  She usually bounces back pretty good, I don't want this to be the time she doesn't.

I'm really trying to get back into the swing of things and back to frequent blogging.  For a while I just felt like a broken record, relaying how I was feeling, how treatment was effecting Brinley and everyone around her.  In part I just wanted it all to stop and go away.  I found as maintenance got closer, the more angry I became.  I know it sounds backwards, I should have been happy we're going into maintenance right?  And I was....but I was also on the tail end of hospital visits every week for nearly 7 months.  I started to resent it, I hated walking the same hall ways, seeing the same faces (even though they are the nicest kindest faces ever) I was angry about every part of taking Brinley to the hospital, and not at her, never at her...but angry at our reality.  Quiet days at home had changed to mornings rushing off to the hospital, IVAD pokes, chemo, lumbar punctures, and waiting.  Waiting to get to this place that is maintenance.  Waiting for peace, a sigh of relief, and the energy to refocus our life a little bit.  But we're here, and as much as I'd like to say "it was all worth it" I don't know if I feel that way right now, or if I ever will....guess time will tell.

I stole this from my friend Lisa, I hope she doesn't mind, but it's very fitting.

Susan Sontag in her work Illness as Metaphor said this:

Illness is the night-side of life, a more onerous citizenship.  Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.  Although we all prefer to use only the good passport, sooner or later each of us is obliged, at lease for a spell, to identify ourselves as citizens of that other place.


  1. Morgan it sounds as if you hit a bit of depression, as weird as it seems,
    al lthe running around, the race against time, the heavy duty schedules
    and appointments, kept you so busy and singly focused on one thing, and then wham - it comes to a full stop...it is almost a let down.

    I get that,it may sound wrong to some people, but for many who have experienced the dreadful journey of cancer, you finally have time to think - to stop, and it becomes overwhelming.

    You feel like now you aren't doing enough. Shouldn't you be doing something, an appointment, drug administering, but actually, as you say you see that there is a degree of normalcy again, you find it hard to accept or even believe, that it really has "stopped" .

    So let your feelings out, talk it over with friends, and hopefully the next two weeks are going to be just great! You need Disney, it's going to be a great trip and Brinley will be fine too. Have fun, take lots of pictures!

    Hugs....Auntie Pauline

  2. I've told you this before I think, you mirror my feelings so well. You are not alone in the way you feel, unfortunately there are too many of us cancer moms out there who now these feelings all too well. You are entitled to feel the way you feel, but don't let those feelings take away from the good moments you have with your family. Every second is precious.

    Enjoy your vacation!!!!
    Ana Rodriguez

  3. I feel your anger. As painful and frusterating as it is living the reality of an illness, sometimes, all the treatments and uncertainties that you havesuffered while taking this journey through the kingdom of the sick is necessary.. . It has and I believe will continue to bring you and your family back to the kingdom of the well! You have done an amazing job enduring these difficult blows life has dealt you!!
    Forget your Worries and your Woes, and have a Great time in DISNEYWORLD!! Make lots of Happy Memories!!
    Lots of Love

  4. Hi
    My name is Jenna and I came acrosss your site. brinley is a courageous, strong, and determined fighter. U are a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease. I love it when people sign my guestbook. www.miraclechamp.webs,.com