Riding home from the hospital was supposed to feel liberating; I expected relief and a “breath of fresh air”…but what I got was crushing anxiety and depression. We drove past a 7-Eleven, not usually a particularly emotional event, and I started tearing up. “How can I go on a short trip?! I won’t be able to stop for snacks. I can’t eat hard food! No one sells pureed food.” Panic started setting in then. How would I do X, Y, or Z with the “new” me? What would people think? How would I talk on the phone? What if I don’t heal any more than I currently am? Once those “what if’s” start, you’re screwed if you don’t stop that path right where it starts. Instant spiral out of control.
We got to my neighborhood and people were walking dogs, kids were riding bikes…completely mundane, normal stuff. I held back a sob. I was jealous. I wanted a normal life. I wanted to be playing with my son, asking how his first day of First Grade went, doing the ridiculous amounts of paperwork.
Instead I helped my parents unload essentials for my shower/dressing changes as best I could and walked into my house. Walking into your own home after some time away is always weird because you realize your house has a smell, its own character you just don’t realize when you’re there all the time. It felt foreign, not at all comforting. I saw my cat and wanted to snuggle him and I couldn’t figure out how with all the tubes and dressings and the inability to use my left arm for much. I felt useless and hopeless.
Determined to get myself showered and go surprise my son at his dad’s house, I ambled slowly up the steps to my bathroom. My legs were so weak. I was out of breath by the time I got to the top. I wasn’t prepared for that reality, either. I got into my room and the tears just started to flow. Hitching sobs, snot everywhere (do you have any idea how hard it is to blow your nose when one nostril has a tube sutured in it, you have a hole in your neck you have to cover, and one arm is unable to do much??), drooling on my floor because I couldn’t control my swallow and my tongue enough to stop it. My mom came in and hugged me and asked what was wrong and I don’t even remember if I had an answer other than something like “I hate this.”
And that, my friends, is when the anger and denial both hit around the same time. Oh, those stages of grief. I locked myself in the bathroom (genius in my condition) and started to (try to) undress myself. My dad had wrapped saran wrap around my arm so it was even more stiff and unusable. My NG tube was dangling out of my nose, pulling on the sutures because I hadn’t taped it to my face yet. I looked in the mirror and saw marks from all the EKG leads and tape, saw the wounds from the drains and bruises from needlesticks and the swelling of my face and my ridiculous huge tongue and my eyes red from crying and I got PISSED. This isn’t supposed to be me! This isn’t how my life is supposed to go! My mom heard me crying and asked if I was ok. I, in my state of mental mush, flipped out. I opened the door and yelled. I said some pretty mean things, actually. I slammed the door and basically said fuck it, I’m getting in this stupid shower by myself if it kills me.
I didn’t realize how difficult it would be to shampoo my hair one-handed…especially given the fact that I bought massive shampoo bottles because they were cheaper. I tipped the bottle on its side, and pressed down with an elbow and tried to get a little in my right hand. What actually happened was most of it went on the floor and a tiny bit made it to me. Once the hair was somewhat washed, I realized washing my body would also be difficult with one hand…because my right hand cannot wash my right arm. So I wedged the loofah against my arm and the shower wall and sort of wiggled against it so I felt like I at least did somewhat of a decent job. I didn’t even attempt to wash my face with the trach stoma and NG tube…too much.
So I exited the shower, slightly triumphant but also bitter about how much I didn’t think about that I would need help with. Sort of a smug yet pissed off attitude. I can’t really remember what happened next, maybe something to do with my mom needing to help me put on a bra (not fun) and her not having brought my “favorite” bra home and the one I had not fitting as well…and the anger reared its ugly head again.
Every sob I had stifled in the hospital. Every bitter thought, every sad thought, every negative energy I had done my best to push down erupted like an angry, pent-up volcano. Half-naked, hair a tangled mess I screamed “I can’t do this!” and I slammed my palm over and over into my mirror that hung on my bathroom door. The mirror shattered. My mother was screaming in the background, and I realized I done REALLY effed up with tiny pieces of glass stuck in my hand and all over the floor. My dad rushed upstairs, tried to calm me down. Someone got a vacuum. A brush pan. Took the mirror down. I was a crumpled mess sobbing on the toilet about how I couldn’t do this and how I had glass in my hand and I didn’t know what to do and I was so sorry.
I don’t really remember pulling myself together, but I know I did because I got dressed. I combed my hair. I hugged my parents and we assured one another we were going to get through this. And I went to see my son.
Since that day I’ve had moments of tears, moments of frustration (especially trying to eat), but no more massive meltdowns. I heard from another tongue cancer warrior that we all have one big breakdown. Prior to surgery I hadn’t really come to terms with the fact even that I had cancer. I was probably in denial, honestly. After surgery I was so focused on recovery and getting out of the hospital I didn’t really think about how drastically different my life was now. But when I saw all the normal parts of life again and was forced to admit I was no longer part of that, that’s when it all came crashing down I think. Not to say I’m not as good as someone without cancer, or that my life won’t get back some degree of normalcy…just that it is now forever changed and will never be the same. So now my work is on accepting that change, realizing that none of us has control over anything but how we react and respond to situations around us, and learning to let go and trust in the process of just being.