This is not a flattering picture. It wasn’t meant to be. It’s a real picture of me. The me that has become who I am over the last four years. I am stricken with severe anxiety and PTSD from everything that has transpired form the first day Adler said ” Mommy, my butt hurts” to the misdiagnosis and watching him balloon up from steroids. To the correct diagnosis which just so happens to be 4 years ago today. I remember everything about that day and it hurts my heart and mind to know the pain that day caused. Our lives were forever changed. The only word we could find to describe our feelings was capsized. Our life became one day at a time. I had to learn everything on my own too. There are no classes in caregiving. There are no books about pediatric cancer. There is no pamphlets or handouts or anything other than what they tell you to expect with the treatment. And it was all right. He was so sick. He lost his hair after the fourth treatment. I remember washing it in the shower and it came out in clumps in between my fingers and I wanted to throw up because my baby was losing his hair because he was on chemo because he has cancer. Fuck. Fuck. That made it so much more real. I rinsed my hands quickly in fear that he would be upset and when we got out, because we had to shower together for a very long time due to his mobility issues and my fear of him losing his balance, I dried him off and his hair was all over him. I cried. I couldn’t help it. I called for Aaron to bring another towel and Adler said “oh well, at least it won’t fall in my pretzels now”. And I cried even harder because he was so sweet about it. We had his head shaved after the next chemo and soon enough he was completely bald and lost his eyebrows and eyelashes too. He was so skinny too. His little ribs and spine showed through his skin like it was a sheet over his bones. He was so fragile then too because of the pain. He was on fentynal and morphine for the pain. And we used natural remedies as well but he still suffered daily. I still suffered daily. I began to see a therapist too because I just couldn’t take it. There are no support groups locally for people like me. I found some online and I am very thankful for the Mom’s I talk to. Especially the one’s who really get it because they are just like me. Mom’s who have kids with cancer or have lost a child to that killer.
I live with these reminders, these thoughts and memories every single day. I can’t just “get over it” because HE will never get over it. It isn’t going away. It is inoperable. He will have cancer as long as those tumors are in him. And they can say they are stable and that they haven’t grown since treatment and that’s great, but stable is just a big bow wrapped on a box of shit. Adler got the shit card. He got dealt a shit fucking deal for sure. He was good for awhile. Things were minimal in the pain department. He was off all narcotics and doing really well in school. His walking was decent. I mean he’s always had an issue with that because of where the tumors are located in his spine but he sure didn’t need a leg brace like he has now. He actually has two but his right leg is worse than the left so he has to wear the right one because his foot isn’t getting the right message from his brain to pick it up so we are afraid he will fall. The left is showing the same trend. The pain comes first then the ability declines. How far will he decline because of this? Because of the tumors. Because of the cancer. Because of the killer that lives inside him. How long before he is debilitated? Will that happen? I don’t know but I worry about it. I worry about so many things that some days, like this day the picture was taken, I can’t control the worry and it over takes me. I worry about germs, his daily pain, his walking, his head, his body, my head, my body. How much can I take before my body gives out? My father has had heart issues since his 50’s. I’m in my 40’s now and my stress level is outrageous. When will it hurt me more than it already has and does? And if one more person tells me to take care of myself, I may scream, because I am doing my best and that’s all I can do. Yoga, meditation, naps, baths, oils, rest, exercise, eating right, taking time for myself…….well, that can all fuck off. I do what I can when I can and most of the time that’s a swipe of oil on my neck and chest while I eat a yogurt or protein bar standing up in the kitchen waiting for some type of relaxation to kick in and it never does. Never. Sleep doesn’t cure this kind of exhaustion. It doesn’t even scratch the surface. This is four years of tired, a nap ain’t going to do a damn thing for this tired.
I had to retire from my position at my family business to stay home with Adler and though I’m still technically involved, Aaron is the only one who work so you can imagine the financial worries too. Debt over time goes from a hill to a mountain and it swells in your mind with each pay period. And yea, we have gone on vacation and we will again because that is the ONLY time we have had as a family that didn’t involve a hospital. Chicago lost it’s luster for me a long time ago. And that is so unfortunate because I loved that city so much. It’s our second home but not by choice. NONE of this was our choice. I hate it. I hate it so much. My anger runs like a goddamn river of lava inside me that I pray never ever explodes. People say “I wouldn’t wish that on my worst enemy” well I sure would. I would wish it twice actually!! If it were only that simple. To wish away the pain. To wish away the disease that causes it. God, if only.
I was taking a moment to collect myself in this picture. I have to do that often when the anxiety hits. Sometimes that doesn’t even help. Sometimes it hits in public or at the movies or at a restaurant or at the school or in my car. I never know when or what will trigger it. But what I have learned is that it’s ok to be the way I am. I learned that with my recovery. My sobriety means the world to me. To stay clean and sober is a daily chore and I do it for myself and for my family. I don’t need the veil anymore. I don’t need the false sensations that clouded and emptied my reality. Do I miss it? Sometimes. Sometimes I just want to feel something other than what I am feeling at the moment but I know a drink or a pill won’t help me. It will only hinder and wreck all I have worked for. My life is worth more than a buzz. So I let the tears come and the trembling and the heavy weight that wraps around and sits on the top of my head and makes me dizzy and I let it happen because it will no matter how hard I try to stop it. It’s like standing on a train track and you see the lights coming but you cannot move. You let it hit you and just hope you can absorb the impact. I’m working on trying to get off the track before it hits but that is in fact the hard part.
Four years. Four years of cancer. Four years of caregiving for a cancer patient that is unfortunately my son. My son. My baby. We were told four years ago today “yes, your son has cancer” and it has never gotten easier. Treatment was awful and he’s yet to recover from it. He may never. And yes the pain left but now it’s back. We barely got a break. I mean we never really have had one. It’s not fair. It’s not fucking fair. HE’S A CHILD. A CHILD. Why? Why? Why do any of them have to get sick. Why do they have to die? Why didn’t he? These are the questions that plague my mind ALL the time. Why does my son know he wants David Bowie played at his funeral? I’ll tell you why, because we talked about it. We have had many talks about life and death. His life and death to be precise. We’ve had to. When he asked me more than once through this journey “Am I going to die?” I would answer honestly “I don’t know, I hope not, I’m supposed go first when I’m really old, then you……lets keep it that way”. Questions from my son at age 4,5,6. 7 and 8 he hasn’t really been worried about it. He accepted it and wasn’t afraid of death anymore. I, on the other hand, am terrified of it. Not just his but mine. Again, I am a worrier and I fear I won’t be here for him. This life we live, our little life here is so full of fear, pain, suffering, sadness and anger but yet he looked at me this morning and said as his dog sat on his lap, “All I need is you, Dad and Boris to be happy, and I’m happy” That’s all it takes for him. He would hold my hands in agony when his pain was excruciating and say “I love you” over and over while he cried. He does that now when he hurts. The pain isn’t as bad and has now gone from the buttocks to the legs and he doesn’t cry but he does say he’s tired of being in pain and that it sucks. But he still says “I love you” when he hurts. He says I’m the best, that I’m awesome and that I’m the greatest Mom ever. I smile and say thank you and hold back the tears because it means so much to hear that and I hope he always feels that way and I need to believe that instead feeling like I’m not doing enough. Like I am failing because he’s still in pain. It’s not my fault. It’s not my fault and I repeat that to myself because it isn’t. I never felt like it was but yet, I feel the weight of the responsibility on me all the time. Daily I feel it and when he hurts its so much heavier. We need relief and I am so tired that it’s hard to decide what and where to go for it. So I do what I can and try to ease his pain and handle my own at the same time and try to keep it all together and not lose my shit. But sometimes, like in this picture, you have to just let the train hit you and feel your feelings and then do your best to pick up the pieces…..even four years later and your still shattered…..walking over those shards of glass trying to find how they fit. There is now way to piece back cancer. There just isn’t. You live broken and that’s the truth. Living with cancer isn’t for the weak, but we are allowed a moment here and there to feel it and I am really feeling it and this is the picture to prove it. This is me, broken, hurting and sad. All me. The cancer Mom.