So here we are, nearly 13 weeks after the surgery. It’s crazy how fast time has been flying on the one hand, but on the other, things seem to be moving at a crawl. I’ve been on what I’ve aptly dubbed as “house arrest” for what is beginning to feel like a small eternity. It’s just me, my cats, my unyielding thoughts and my crutches day after day in a sea of books, television, my loyal peeps/family and the occasional jaunt to a medical facility. Sometimes I feel like I’m looking at life through a pinhole, craving the freedom and independence of escape but also feeling the fear of what lies in wait. I’ve been cooped up for so long I’ve become like a caged animal, afraid to leave captivity but feeling my base instinct telling me I am meant to roam free. There are days like today where I just feel full on anxiety wrapping it’s evil clutches around my guts, unsure of how I can truly relax. I have to remind myself that while this feels somewhat like purgatory, hell is miles behind me. That there has been a marked progression in my circumstance from where I was all those weeks ago. I can now crutch short distances without a wheelchair. I can cook myself meals, albeit with an annoying level of difficulty. I no longer need help bathing. I don’t need the support bars over my toilet to use the bathroom. I can sleep in my bed alone without being deathly afraid. I can sit here and type this post without crying out in agony from sitting. They are small victories but they are victories none the less.
People are always talking about taking things one day at a time and saying that one should always live their life in the present moment. I’ve always had extreme difficulty doing this and have definitely struggled with the concept of both throughout my tumultuous journey. The only thing I know is that the past is too painful and the future is too frighteningly uncertain. So I will do my best to just rest here in the present. As Emily Dickinson so poignantly wrote over 60 years ago; Forever is composed of nows.
It’s been a long time since I’ve posted. For whatever reason I haven’t been able to just sit and let the contents of my mind flow outward. I’ve been trying to keep it all in. Sometimes I’m afraid that if I really get in touch with what it is I’m feeling/thinking, I will completely lose it. Like I will start crying and just never stop. I have to say, holding things in hasn’t helped me any. It’s only wound me up that much tighter.
I’m utterly exhausted. I am now an insomniac. I can’t think of the last time I really slept soundly. My personal best is 4 hours straight without waking up, but most nights I awaken every 2 hours. On particularly troublesome nights, I am up every 45 minutes to an hour. There’s always a time before dawn where I am just wide awake, changing positions restlessly for at least an hour, sometimes 3, trying desperately to fall back asleep. I do somehow manage to have dreams while I’m in these brief slumbers and they run the gamut from fairly happy to dark and disturbing. I don’t think I’ve had a full, undisturbed 8 hours of rest since 2012. Although when I was on Gemzar, I was so tired I felt like I couldn’t keep my eyes open for more than ten minutes. I felt complete exhaustion from the moment I woke up in the morning, like I hadn’t slept for days.
What I wouldn’t give to sleep through the night. At this point, I’m used to looking in the mirror and seeing dark half-moon circles under my eyes and fine lines that never used to be there before. Even when I take an Ativan, I still awaken 2 hours after I close my eyes. I used to be a champion sleeper. I could go 12 hours straight if I wanted to. Sleep has always been an escape for me. When I didn’t feel like facing the world, I could just lay down and be someplace else in my mind. A couple of weeks back, I had a dream that my friend and I were walking in the woods up a very steep grassy hill. We were going towards a light, a sunset so bright and colorful, it could take your breath away. Pinks, oranges, purples and golds all swirled together into this almost blinding light. When we finally reached the top of the hill, we discovered that it was a cliff. At the bottom of this cliff about a mile down, there was an ocean and a road. I tested the ground before us with a stick and it went straight through the earth. She told me she was scared and we held hands. I said to her that I wasn’t ready yet and we slowly walked backwards away from the edge. Then I woke up.
I’m not ready yet…
Cancer can make you do some stupid things. It can completely cloud your judgement. It can lead you back to people and situations that are just as toxic now as they were once upon a time. But you think, “Fuck it, I have cancer. What do I have to lose?” While that initial bout of fearlessness is quite liberating, in the end it will only break your heart. Some things never change, even though you have. You think things will be different now, but they won’t. Everything seems to be just as you left it. Why do we suddenly cling to things we know aren’t good for us when shit hits the fan? Why in moments of intense vulnerability and weakness do we find ourselves complacent to grasp at straws and consume the paltry crumbs carelessly left behind with such fervor? They will never truly satiate us or satisfy even our most basic desires. Why when faced with the prospect of our own mortality are we willing to settle?
This post is for everyone else out there who is currently suffering and staring down the barrel of a gun. Don’t you dare for one minute settle for less than you deserve. Not for anything or anyone. If this is indeed our last hurrah, do we want to go down knowing that we compromised ourselves? That we let our pride and dignity fall by the wayside for a moments pleasure? Or some pathetic attempt at seeking comfort?
My grandmother always used to say it’s better to be alone than in bad company. Remember that there were valid reasons why these people and places disappeared from your lives and being sick doesn’t change any of that, much as we wish it would. Now is not the time to settle, now is the time to revel in the pure and genuine aspects of life. To lean that much harder on those things you know to be true. The things that don’t bend in the breeze. The people who deserve to be in your heart because they’ve earned it. Those who know your worth and never let you forget it for a second. Don’t waste another minute of your time dwelling on things that ultimately aren’t worth a damn. Don’t lose anymore sleep over people who rest comfortably in their beds at night without a thought of you. Trust that there is better, trust that there will be more days in the sun.
I had to pay another visit to the cardiologist this week. My oncologist is looking for someone to tell him exactly how strong of a drug he can use on me without giving me a heart attack (always a good thing to know), so I had a pow wow with a specialist. Prolonged QT syndrome isn’t just some bullshit inconvenience that prevents me from ingesting certain medications, turns out it can occur anytime and it can be fatal. In fact, the cardiologist was so concerned about tracking the rhythms of my heart during my recovery that he decided I needed to be fitted with a recording device. This pen cap sized piece of modern technology knows when my heart is too slow or fast, is experiencing arrhythmia or any other maladies. Yesterday morning they implanted a loop recorder into my chest just under the skin and I was told I would likely need to take beta blockers for the rest of my life. It seems I officially have a heart problem. How, after being perfectly healthy for almost 31 years on this planet with a fully functional heart, did I suddenly end up here? I wonder if this thing can detect heartbreak?
If cancer was a job, I would have given my two weeks notice after my first day. Not that it’s a position anyone in their right mind is vying for, but I am just not cut out for cancer.
I am somehow allergic to every single anti-nausea drug on the market. I am allergic to just about every medication you can think of, (including fucking Benadryl!!), thus landing myself in the E.R. more times than I’d care to remember. It’s like anything that can possibly make chemotherapy the slightest bit easier does not sit well with me. And then there’s the damn chemo itself, which seems to affect me 10 times harder than it would an average person. We’re at the point where it’s unclear what is the best course of treatment for me because I’m “so sensitive.” Jesus.
I’ve been told that I’m “sensitive” my whole life, but usually it’s referring to my personality. Maybe it’s because I become emotionally invested or that I care very deeply about things. Maybe it’s because I’m a worrier and I over analyze everything. Maybe it’s because I cry easily and fall in love hard. Maybe it’s because I’m too nice and trusting. Whatever. I never saw being sensitive as a bad thing, but in this case…being sensitive sincerely sucks!
It’d be nice for once not to have a fucking complication or an unexpected side effect while I’m trying to get through this. It’s bad enough I have to suffer through all of this shit again for a second time for whatever reason, but can’t it be somewhat bearable?! It’s times like this I wish I was anything but sensitive. That I could be a stone cold bitch who feels nothing. But alas, I’m just the same old “sensitive” gal I’ve always been and it ain’t doing me any favors right now.
Some people say blood is thicker than water, others will tout that family is not about blood but those who are willing to hold your hand when you need it the most. I’m finding that I’m blessed to have both an amazing family who will always be there for me and a small group of people who are willing to stand by me no matter what. Unwavering support is a beautiful thing. Sometimes people really surprise you. Sometimes people you thought would always be there for you aren’t and people you never thought in a million years would be by your side step up. The outpouring of support I have received after my diagnosis has been truly staggering. It’s nice to feel so much positivity and prayers floating your way, particularly on those days when you can muster neither. People say that there is power in prayer. Perhaps. Though I have to say it feels pretty good to know that family, friends and complete strangers are thinking of you when they are communicating with their respective G-ds all around the country and the world. I don’t know if it’s helping, but it certainly can’t hurt.
In preparation of my impending hair loss, I decided to chop and dye my all-too-new curly mane into a short pixie. Then, after I got released from the hospital for heart palpitations due to my enemy, aka prolonged QT syndrome (bastard!), I thought why not have some fun with it before it ends up on the floor, (and well, let’s face it…everywhere else you can imagine!). I remember desperately wanting to bleach and colour my hair in junior high school, (I was heavy in the grunge phase and well, it looked cool as sh*t in the 90’s! lol). My parents would not let me use the bleach, but I did put some punky colour in my hair anyway, it just didn’t quite show up in my naturally dark hair, much to my disappointment. This was an act of rebellion and an homage to my 13-year-old self. The girl who oh-so-desperately wanted to go to Woodstock ’94 to see all of her favorite bands but ended up at summer camp instead, (ugh!). The girl who wore Doc Marten’s on a daily basis and her father’s old flannel shirts from the 70’s, (cause that is definitely the last time he wore plaid!). The girl with so much potential with a bright future ahead of her. 20 years later, I’d like to think I can be that girl again…just a little older and wiser.
I made a point today of putting away all of my many hair products and styling stuff. It’s best to get that out of the way now before it starts falling out and feels more depressing. I know, I know for a fact that it grows back. I have witnessed it first hand. That much like it says on every list of possible side effects I encounter, it is a temporary hair loss. But you know what? It still really sucks. Women value their hair, it makes them feel feminine and sexy. I have been known for my hair for as long as I can remember. People are constantly complementing me on it. That long, thick, wavy, Gisele Bundchen-esque crown of glory that I loved and prided myself in pre-cancer. My hair had become my thing. A significant part of my identity. Something I was known for. You never imagine that one day you will be utterly bald, as a woman. It was really hard to look into a mirror without crying, without feeling ugly…like I had lost my essence. Thinking that I looked sick. Someone close to me recently told me that my hair isn’t who I am and whether I am bald or not, I am still exactly who I am and that I would always be beautiful (gotta appreciate that ending!). That really helped to remind me that I am still me, no matter what I may look like. I still have the same hopes and dreams, the same sense of humor and tastes, the same feelings in my heart and mind. The same love for my family and friends, (and let’s not forget all the animals). I have to remind myself constantly that I am more than just a body, more than just hair. I am a soul, and my soul cannot and will not be altered by this disease. Cancer is not my life. Though when I am bald, standing naked in the mirror looking at my reflection , it can be pretty tough to recall. At the end of the day though, despite appearances and the situation, it’s always still just me.