Have you ever seen the movie Constantine? The movie with Keanu Reeves and he plays the demon abolishing Marvel comic book character Constantine…..anyway, there’s a scene in that movie where he puts his feet in water and stares at a cat and he can actually go to hell. I don’t know much more about it than that but I know the scene and how he ends up there and what it looks like and that he can walk through hell. He can transport himself there when he needs to and it’s like an apocalyptic world with remnants of cars and a city and lost souls are swarming about to do the devils bidding. Well, my point here is, I know what that feels like because these three people in this picture have walked through hell, just not exactly in a Marvel movie setting.
We most certainly have been through hell though, there is no doubt about that. I describe it like a movie because I often felt and still do feel like I was watching someone else’s life and now with Facebook’s timeline of what happened on this day from years past, I can watch it like a movie almost. A picture diary of the hell that was pain ridden days spent stuck on that fucking couch with Adler sitting on his heating pad and lost in YouTube videos to distract from said pain that broke through a 25 mcg fentynal patch and oral morphine. The Spider-Man puke bucket near by for after weekly chemo days or when the pain would be too much and he would vomit. I never in my life thought I would “get used to” vomit but I have. I have caught it in my bare hands many times. And now we have bowls placed around the house because our son has suffered through so much that he and we have PTSD from this hell we walked through and his anxiety causes him to vomit if he gets nervous. Even if he gets excited his beautiful brain sends those fight or flight signals out and he gets nauseous from being to happy even. It’s literally one day at a time because even not on treatment now for thank God over a year he still pukes. And when he does, he really does. He pops blood vessels in his face often and when his pain was so bad he would need me to hold him up physically because he would buckle in pain that would radiate down his tumor filled spine and cause his buttocks to hurt and that is how the hell all began, with pain, pain in his buttocks. Pain that he described at lighting hitting him or 500 grown men punching his butt. Yea, that sucked. I am happy to say he doesn’t have that pain anymore but I, me, have trouble forgetting it. I have trouble forgetting all the hours spent on the 6th floor at Memorial Hospital and the uncountable times we have been to Lurie Children’s Hospital in Chicago. Chicago used to be fun and now, well, it’s rather tainted.
I have worked with my therapist on emptying my locker of the pediatric cancer pain ridden past because unfortunately in my world it is ever present. I am very much like a rubber band always pulled tightly and that is a hard way to live. I am worried about Adler almost all the time and my mind is never at rest. I take many forms of beautiful distractions but sometimes that doesn’t even work. I need more. Something more real, more tactile and palpable but that’s hard to find and hard to designate time for. Music, books, social media binging and TV shows on season after season or movies and time with my friends to help ease my aching mind. And it does ache. It pounds with the memories that flood back even in the middle of the night when I am asleep woken by bad dreams or nocturnal panic attacks. I didn’t even know that was a fucking real thing until I experienced it and it’s happened a few times. I have had anxiety attacks in public, at home, at Adler’s school, in my car and at the movie theater. The fucking movie theater. Come on!! It isn’t fair. As immature as that is to say, it isn’t. And it isn’t fair that my son is only 7 and upon our last ER trip which was just 2 days ago they said his veins in his hands were shot. They have been poked and stuck so many times that much like a junkie, they won’t take a needle very well anymore. HE IS ONLY 7!!! My God. And I can say junkie because I am a recovering alcoholic and a prescription pain pill addict. And I tell ya I could go for a pint of Crown with some blues playing or a bottle or two of our wine that we make in Napa that is undeniably some of the best wine I have ever had or my favorite secret, Vicodin with a small non fat hot cocoa from Starbucks at Super Target on a Sunday. I miss that feeling of not feeling. Or was it feeling but just feeling something different. Either way, I am clean and sober 2 years tomorrow so I won’t be doing that because I am stronger than that.
I am stronger than I think even when I am shattered and huffing my “relax” oil smeared all over my hands sitting bedside in the ER with all the beeps and clicks and ticks from the IV pole with fluids running and watching his heart rate like a soap opera on the cardiac tele. It’s become routine. I actually miss chemo time because that was my known job for 15 months. And now sometimes I feel rather lost. I was his chemo caregiver. I was on call for that time. I was ON too. I mean never forgetting anything. Now I have forgotten my own doctor’s appointments and I call to cancel or reschedule because of an emergency and they are rude and unapologetic about it. So for the last 3 years I have put my dental health on hold and now have cavities to deal with but can’t make the goddamn appointments and they complain to me about it when I call. Don’t I get some kind of compassionate cancer card I can play here??? I should, I should have a legit card to throw at unwilling participants like a red card in a soccer game. A fucking yellow flag like in football and a red one in my pocket to throw out to challenge some asshole who DOESN’T GET IT. At least it would be a warning right? I mean I have Fuck Cancer on my mini van. I am not in my right mind yet I stay very reserved and calm for someone who has literally walked with their son and husband through not a virtual movie made hell, but a real one. One of pain, suffering, vomit, narcotics and poison. Poison that was pumped through my son every week for 15 months. If it were to have spilled, it would have been treated like a hazardous chemical spill and that was going into my son as he sat in this little wooden rocker or green wooden chair hooked up to the IV pole that pumped that shit into him and stripped him of his immune system, took his hair twice, made him sick as a dog and lose weight in a matter of weeks to the point of near anorexia. He was so thin and scared. I was scared. My husband was scared yet he processed it differently than I did. And now we as a couple are dealing with our walk through hell too. It breaks people. It scars them. It has done both to me.
So now here we are. We don’t look like this picture anymore at all. I have lost weight and cut my hair and colored it a few different shades. Aaron, lost some weight too and I think he’s more grey now. And Adler can walk better, doesn’t have a port that was accessed in this picture that made his left arm droopy because it was near his left arm pit. He has hair. He has grown taller and gained weight. But he’s still sick. His cancer is stable and has been for over a year but every single time he gets a headache or throws up it’s instant worry. He has two other diseases that can be life threatening if not handle properly and those two symptoms are two that could say shunt malfunction, or could lead to issues with his adrenal insufficiency. It’s never just a virus for him even if it is. How do we heal? How do we move on? How do I heal when I feel like I might still be stuck in that Marvel movie hell I compare it to? I don’t know but I have been working on it. Making changes in our home to make it a “happy home” again and making some changes in me to make me happy too and continuing to work on the ones I have already made and conquered. The demons maybe real and they may be around but that doesn’t mean I can’t walk right past them and flip them off……