Hurry up and Wait

Tuesday, June 5, 2012

After a rough night of anticipation and anxiety D declared that he was actually not going to get out of bed this morning.  Hummmmm, what do I do with that???  He needs at least 30 minutes to take his meds, preferably with something in his stomach,, which takes another 30 minutes....GET UP!!!!  I wanted to shriek....

And then I stop and look at my trembling boy, curled in a little ball under the beautiful shawl that a group of church ladies made for him.....

DAMN THIS DAY!!!!!!!  I just wanted to let him doze and relax and not be a boy who has to get chemo today with all the fear and anxiety and untoward side effects that come in days to follow.

But as you know by now, in reading about this incredible boy, he knows when and how to apply his strength and courage even when every cell in his body is screaming NOOOOOOOOO I DON'T WANT TO.     He drags himself out of bed, puts on his "treatment" shirt (some neighbor friends brought him this super cool black shirt that says "This is my gameface" that he is going to wear each time we have to go to Albuquerque), came out and asked for an omelet and began downing the line of meds sitting at his place at the counter.  No complaining, no emotion, no talking...just down to the business at hand.  That is CLASSIC Dillon.  Hating every minute of all of it, but doing it nonetheless because it must be done.

His appointment in the clinic was at 10 a.m.  They do an exam, talk about how the week went, explain the rest of the procedures for the day, and then they send you off to the infusion lab from the actual chemo.  We did not get into the exam room until 11, the doctor came in at about 11:30.  We did not get to the infusion and begin chemo until almost 3 p.m.  All the while Dillon is so tense with anxiety and fear and worry that he can scarcely breathe.  Once we finally got up to the treatment area and they placed his port access (which involves sticking a needle into the port on his chest) his mood lightened, his demeanor shifted, and he was able to enjoy some video games the hospital has on hand to use during chemo. His fear, it turns out, is all around that darn needle and accessing the port.  We have a very strong numbing cream that we apply when we leave the house, so it was on his skin for hours.  As seems to be the usual course of things...the needle stick took 2 seconds, Dillon thought about screaming but then realized it was already over.  I knew what was going through his mind...."I have been so stressed about this and it did not even hurt."  I have got to find a way to crack through those thoughts BEFORE the whole entire night before treatment and the day of is consumed with angst.

The drive home was a challenge because he was exhausted (partly from the chemo but mostly from the emotional stress and let down of the day).  It was hard for him to sit upright in his seat belt for that hour but a tart lemonade from Starbucks and some cherries off of Nana's tree helped a bit.  (  You might be wondering about his physical self.  He has lost about 6 lbs, which on his lean frame is a lot.  One of the side effects of the steroid he is on is increased appetite and that seems to have kicked in since we got home.....so mama bear is feeding away and learning all the tricks of sneaking extra calories in anywhere and everywhere.)

We arrived home to another wonderful meal, which Dillon partook in.  He has been eating very differently from the rest of the family but last night and tonight he ate what we ate, which was a wonderful thing to see.  He went to his room and snoozed for about an hour and then he had to get back up for meds.  He knew that was going to happen so he did not react to strongly....besides....there were strawberries and whipped cream waiting....

We had to say goodbye to my brother and niece this evening.  It is so amazing to have such a strong, intact, supportive, loving, hands-on family.  All 4 of D's grandparents have been here, as well as my brother and his daughter, and tomorrow Sean's brother and his daughter are coming in.  We are rallying...ALL of US....including all of you with your prayers and love and notes and emails and donations and food and just the amazing amount of positive energy that is flowing in our direction.  We feel it....if you are in doubt about your individual power...WE FEEL IT!!!!!

And so we make it through another day, another night, another treatment.

See you tomorrow