Deserve's Got Nothing To Do With It

We're back in the hospital and I've been meaning to get some writing done and leg work done to get more songs for the Songs For Aidan project, but for most of this admission I've been swept off on a wave of apathy.  This has been one of the more uneventful admissions we've had since we started this battle, but for some reason it's also felt like one of the longest.  I think the cumulative effects of the hospital are starting to pile up on us the way the chemotherapy is piling up on Aidan. We've been here too much lately between chemotherapy admissions, unexpected stays for fevers and the weekday trips for radiation therapy. It's all too familiar now and every aspect of it has become tiresome -  The food, the sleeping situation, the way the room is laid out, the often poor reception on the TV, the access cards that don't work 5 minutes after you add parking to them, etc.  We're on day 4 of a 5 day admission and we were ready to go home about two days ago.

I get to go home tomorrow because I'm back to work at the office on Monday. Jamie and Aidan stay until radiation Monday morning and then get to come home.  Once home the overwhelming boredom we feel inside the hospital will be replaced with worry as his blood counts steadily drop and we try to avoid another admission due to a fever.

Aidan hasn't had a lot of physical side effects from his treatment at all.  Certainly not to the degree that a lot of kids do.  He has had a sore throat on occasion and some jaw pain from the chemotherapy but he's never required anything stronger than Tylenol to give him relief.  The biggest side effect for him (at least from my perspective) has been emotional.  He's become much more physically clingy.  We are always happy to hug the boys as much as they want, but it still makes us sad that he needs so much more physical attention these days. We can't help but think it's because deep down he feels really scared or feels unsafe.  So when he leans on one of us and hugs us at really inopportune or inappropriate times (like in the craziness of trying to get dinner ready, or while one of us is on the phone) it breaks our hearts a little bit.

His patience level is pretty much nonexistent now.  It's a weird juxtaposition because he's so tough in the way he deals with his treatment.  He never complains and always seems to have a smile on his face even when he knows that he's due to have some unpleasantness headed his way (port access etc) but if his iPod touch freezes, or he can't get past a level on his 3DS he is instantly in tears. I find myself telling him at least twice a day to calm down and that whatever he is so worked up over is not a big deal.  Yesterday he had one of these episodes right around the same time I was worked up into a pretty big rant that essentially boiled down the phrase "Don't hassle me!" and I realized that it's not just HIS problem.

I've lost a lot of patience too, and my frustration level always seems to be on the high side of normal simmering just under the surface waiting for something to give it that little bit of extra energy it needs break into a full rolling boil.  The only difference between me and Aidan is that I have more coping mechanisms in place having been around almost 29 years longer than him.  I also have the cognitive ability to objectively look at my behavior and try to find the reason that it's happening.

If Aidan didn't always shrug his shoulders and say "I don't know" when we talk to him about his frustration and how it manifest itself, he could probably answer "Because I have cancer" to the question "Why do you think you get so upset over this little things?"  He certainly wouldn't be wrong and I suppose that is the simplest answer for me too when I ask myself why I have such a hard time keeping it together when life decides to start throwing non cancer related curve balls my way. Underneath all that though I think ,for me, it's about fairness.

Aidan's second grade teacher always told the class "fair is where you take your pigs in the summer!" when the kids would whine about whatever injustices occur in a 2nd grade classroom.  We certainly recognize that life isn't fair.  It's impossible to have a child with cancer and think otherwise.  There's no justice to be found watching your bald, eyelashless and eyebrowless son lay in a hospital bed for 5 straight days and receive medication that is designed to poison his cells. Believe me, we get it. Life is most definitely not fair.

At the same though I have an (unrealistic) expectation that because of this incredible burden laid at the feet of our family, the rest of our life outside of our cancer bubble should go relatively smoothly because "aren't we dealing with enough?" So when things start to go wrong and become difficult I find that I just become instantly angry and indignant.

As I was thinking about this last night I was reminded of the iconic scene from "Unforgiven" where Gene Hackman's law man Bill Dagget lays on the floor of the saloon staring up the barrel of a shotgun held by the haggard former killer for hire William Munny.  Dagget says "I don't deserve this - To die like this"  Munny simply replies "Deserve's got nothing to do with it." I guess it doesn't, but it's a hard thing to accept. I'm trying though - hoping that if I can truly accept that "deserve's got nothing to do with it" I can let go of some of this anger and hopefully be more effective at dealing with life outside of our cancer diagnosis.