New week.

 Sleep has been hard, emotions have been running high, nausea has been constant.   

I’m not going to lie I’ve been struggling.  My sleep has been horrible.  Although it is getting better.  From Tuesday-Friday night I was averaging 3 hours of sleep.  Saturday I got a full 5 hours and last night I got about 6 hours.  But here I am at 5:00 (been up since 3:30) with everything racing through my head.   I worry about the kids, I worry about Bryan.  Will this be my last Christmas?  My last time celebrating Bryan’s birthday.   This will be the first year I don’t take Bryan out for his birthday.  Not because I don’t want too.  But because I can’t.   The kids don’t really understand-Trent asked if we could go to the 99.  I’ll make a nice dinner and brownies instead we will watch his favorite Christmas movie.  Maybe grab some hot cocoa and check out lights.  

I hate not working.  I hate having these thoughts all day.  Work kept my mind off things-it was a distraction to what’s going on.  It was a distraction to the fact that I am dying and there is nothing I can do to change it.   In fact last week I had to make the hardest decision of my life when I told the doctor I couldn’t take the Ami treatment anymore.   Now I am wondering if I should just stick it out.  At least then I’d have another option in my back pocket.  Right now I have nothing left.  I have no backup plan.  I have no alternative if it doesn’t work.   But the reactions are scary.  The uncontrollable itching, the chest tightness.  The symptoms that come when the Benadryl wears off-restless legs, heavy chest, itching again.   The ones the nurses aren’t there to control.   The ones that I know are related to the Ami, but wonder if they will ever stop.  The ones that cause more anxiety at 2 in the morning.  

And then comes the nausea-the uncontrollable feeling I need to be sick.  Honestly I’d much rather be sick and get it over with then have waves of nausea but that’s not how this seems to work.   

So here I am at 5:30 in the morning silently crying trying to not wake Bryan or the dog.  Wondering what I did to deserve this. Why life has to be so difficult-emotionally, mentally, financially, physically.  But also remembering how incredibly fortunate I am.  Our families helping in so many ways (more ways than I can even count or thank them for and feel horribly guilty because I’ll never be able to repay them) our friends that have surrounded us with love (which leads to more guilt when random acts of kindness show up and four days go by and I haven’t thanked them yet).  

Yesterday I noticed that I had another bald spot.  This time on the side of my head   Not as big as the one on the back (that one’s really big!)  But then I remembered I am coming off the Ami-my head sores are going to start to heal-and I’ll be able to rock knit hats without getting my sores infected.   Heck I might even rock a pink wig.  I’ve been wearing bandanas for the past several months to hide the scabs and sores and honestly the bald spot (I’m really self conscious of that damn bald spot).  I’ll rock my shunt scar and not care what people think.  Okay maybe I will care and still be self conscious but if I tell myself I won’t be it might happen.  I’ll save time in the shower and on hair products 😂

I will remember that I will have two kids that will be thrilled to distract their dad so I can cook him a meal this Friday.  They will be excited to help cook brownies and have no limits.  They will be thrilled with the little things on Christmas morning.  Baelor has asked for those cinnamon buns I make on special occasions.  Of course I will Baelor B-it’s a tradition and you can have as many as you want.  I might even make a can (let’s not get too excited I break them out of the can) on Christmas Eve too.  We will continue to teach our kids it’s who is around the Christmas tree not what’s under the Christmas tree that matters.  And I’ll always be there with them.