The Makings of Crazy

One thing about chronic illness is it pretty much makes you crazy, among other things but crazy is the thing that stands out this week.

So, there those results sit on a desk not far from here.  I have been through just about every emotion in the past 6 months as we have waited.  Among all the feelings was the underlying pull of denial.  Denial really messes with you.  If you indulge in denial for too long, you begin to lose sight of what is real and everything actually appears just fine.  Denial has a friend doubt and doubt messes up all the sense that denial tried to make out of a situation.  You second guess everyone, everything and most of all you second guess yourself.  Your understanding of things becomes based on doubt and denial and that just creates a big mess.

I have gone from loving our doctors to hating them.  I have gone from feeling like driving all night to get to Seattle to get the news, to not really caring if I ever hear the news and then back to wanting to drive all night.  I have been doing everything I could think of to push away from what is inevitably going to happen.  I have been doing everything I could to be mad and stay mad.  It's way easier to be mad than terrified.

Yesterday, after a series of unfortunate events, it was determined that a conference call did need to happen.  When the nurse from our local Oncology office called to set that up, I felt ashamed at being so cranky about wanting a conference call but not getting a conference call.  Then I got the conference call but I really don't want the conference call.  I spent most of the afternoon and evening just in knots over this.  Why can't I know what I want and why do I always feel restless?  I hate not feeling grounded!

I finally got up the courage to email our wonderful doc in Seattle yesterday and attempted to get clarification since she seemed to go from this being a big deal to not a big deal.

She called me at 7:30 last night to talk.  She was very concerned about how I was feeling and wanted to set things straight.  I was so glad she did...sort of.  She said that the kids are not in immediate danger, not any more than they are on any given day and there is nothing she would do differently in this moment. Nothing to panic about.  However, she said that there are many things we need to do for the kids as soon as we can get started and decisions need to be made on how to approach the near future.  They need to have bone marrow biopsies again! We just did that it feels like.

That was a hard conversation because it brought me straight out of denial into those not so fun things I have to face and feel.

So, the conference call is happening next Friday, here at our local Oncology office.   She felt like it would be okay to break the news to us this way as long as we could be with our doctor here.  Then, we will make a plan for getting to Seattle to meet our new team of doctors.

I am fine for the most part, just a lot of internal struggle to gear up for next week.  It's going to be tougher than I am letting on.  You know what my biggest fear is about the conference call?  Crying.  I don't want to break out into tears when she tells me.  I want to be strong.  I want to be brave and front my way through this...but I'm afraid I won't be.  I bragged that this wasn't my first rodeo earlier in the week and while it isn't, it's a new 8 seconds I really don't want to experience.

Yesterday, Spencer sent a picture of him on a hike he took for P-day.  I know he's been sick almost daily and I know he has not gained an ounce of weight and after seeing the picture, I think maybe he's even lost a bit.  His pants just seemed to hang on him.

So, yesterday was a crazy wake up call!  I hate crazy wake up calls as opposed to just a normal wake up call.



  1. Hi Kat, I found your blog through a LinkedIn group. As a mom (21year old son) my heart aches for what you are going through. As a writer, I am wowed by your ability to express such complicated feelings and really take us on this journey with you. Thank you. I'm sending you lots of love.
    PS I hope you let yourself cry - it's so good to cry!

  2. Bless your heart. And those sweet kids of yours. You are a wonderful writer.


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