Friday, September 2, 2011

Worst Case Scenario

Today was an emotional day. Don't get me wrong, I have many emotional days, but today was pretty intense. Being a pediatric oncology nurse, I've seen a lot of tragedy. (Not that you ever get used to it). I've seen my share of miracles as well, but any onc nurse will tell you, sometimes the unit can be intensely no hope, no light at the end of the tunnel, why did I ever pick this job, sad.
My job has always affected me. I can sit here and pretend I've seen it all before, but that would be a complete and utter lie. Every patient impacts me in some way, and sometimes, that way happens to be by breaking my heart. I can talk about professional boundaries, and coping, and learning to distance yourself from the stories of your patients, but it's crap. I don't believe there is one person walking this earth who can work in this field and not have a little bit of their heart broken-- even if they won't admit it.

I've always been able to empathize with people in various situations. However, since meeting Jonathan, I feel things differently. It's hard to explain. Work was always challenging emotionally, but now that I also live it. Well, let's just say I need a mental health day now and then. I feel like I can understand a different side of things, in a different way. It's not just the typical feeling of "Oh, that's so sad." I feel like I can relate in a way. No, Jonathan isn't my child... but I feel the frustration these parents are feeling. The constant, "Why?" The constant worry. When I take care of adolescents, I feel the way they do... that their entire world has flipped upside down and they have entered a different dimension. In a way, cancer creates its own world. A world I wish less people knew so much about.

I see parents in the hallway and know they are silently praying and wishing to see their child grow and live their dreams and I know that I, too, silently wish, probably 100 times per day for the same thing -- time. Time to have a life together, time to get married, have children, buy our dream home. All the while I know that no amount of time would ever be enough with Jon. There is never enough time with the one you love.

Jon and I have created a life together... a life together that may not be "normal" because of dealing with his disease, but somehow we've made it the most perfect life we could have ever imagined. But we fight for it...every single day. Something is always threatening it, challenging it, trying to damage us. It's exhausting.

He's been feeling pretty good, he looks great, and of course that means panic attacks for me. My constant fear of things being "too good" or "too easy". The minute I let my guard down and stop worrying, something is bound to go wrong, right?

Today, Jon went for a routine evaluation of his heart (since chemotherapy he's gotten in the past carries a risk of damaging the heart). They found a 'medium to large' pericardial effusion -- essentially, fluid around the heart. The doctors allowed him to go home since he's pretty asymptomatic. They are leaning toward it being a result of one of the oral medications Jonathan has been taking (of course, the one we think is actually holding his disease stable.) But I automatically think worst case scenario, which isn't helpful to my own mental well-being, and certainly is not the support he needs from me. He deserves more from me. When I'm upset he'll hold me and say, "I'm right here. Do you feel me? I'm not going anywhere." I hope he knows every second of every day that I'm not going anywhere either.

Sometimes I feel so incredibly threatened... all I want to do is run home and hold onto him as tightly as possible.