What's it all about

I have been feeling guilty the last few days so here is my true confessions.

I feel like all I write about it is how this is affecting me.  Make no mistake about it, I fully understand how this is affecting Shelbie and the boys, even my Wasband.  I don't feel like I have a right to talk about Shelbie's feelings all the time because they are her feelings, not for me to publish or broadcast.  I have urged her to start a blog herself.  There are vast and varying differences in the suffering of a caregiver, as opposed to the suffering of a patient.  So, I write about the things I know, the feelings in my heart but in doing so, I can see how selfish that may come across, as if I'm the only suffering here.  I'm not.  We are all struggling at times.

It really is all about Shelbie.  It's about the kids living their whole lives with the thought of dying only an abstract collection of words in the back of their mind; a vague statistic they would hear on occasion at an annual doctor visit, bone marrow biopsy day or some rebellious research they tried to sneak in on their own.

But now...it's happening.

Shelbie has yet to really talk about the state of affairs right now.  When we talked about the scan results, one single tear fell.  That's all.  Later that night, I asked her if she wanted to talk about things, process things and with sad, tired eyes, she looked into my sad, tired eyes and said, "I just really don't want to die."

"I know.  I just really don't want you to die either." simply, and profoundly stated. No tears.

The days come and go and I think we are managing alright but towards the end of the day, I find it harder to manage.  It's always around midnight, when Shelbie feels like talking or at least letting a little thought or two escape her mind.   Last night, after prayer, she said, "You know it's cancer right?  PET scans show cancer.  Healthy normal cells don't run on radiated sugar, only cancer cells do."

"I know.  You may be right."  I'm trying so hard to just acknowledge her thoughts instead of counter-thoughts rolled around in colorful sprinkles of denial.   She's right.  I'm sure she's right.

So, another sleepless night for me. I think I imagined every puking moment in store for us if she has to start chemotherapy.  I already lived through the moment of having to shave her head,  her cries of desperation on the days when it will surely be too much for any one soul to take.  I already heard her fears rattle in my own head all night long.  I pictured her laying in a hospital bed.  I imagined me losing our house, losing my job, losing everything and maybe even my daughter; all of them.  It was a horrible night.  I hate my head sometimes. My head creates more trouble for me than any actual circumstance we have been through!

I fell asleep sometime around 4 and my alarm of anxiety went off at 5.  There is nothing quite so rejuvenating as the feeling of anxiety sprinting through your arteries and running laps in your gut.  That shaking feeling is a great way to wake up.  Makes you want to head off the kitchen for a hearty breakfast of bacon and eggs.  Instead, I took the strongest thing we have- generic Advil, got up and got dressed, opened my computer and decided to take a nap at 5:30 for an hour.  It's going to be a long day...

Still no word on surgery.  We are holding on and holding out.



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