Confessions Of A Cancer Patient

survivor guilt

I’m awake, for maybe the fifth or sixth time tonight. Like other nights, it’s a cold sweat that wakes me. I rise up and stare sleepily at the light that shines through my blinds. My body aches, there is no comfortable position to sleep in. I rise slowly so I don’t wake him, and I hear a soft snore that tells me he’s deep in a dream. The weight of my own body almost feels like too much and balance takes real effort. It’s a long walk to our restroom only about 6 feet away. I dampen a cloth and moisten my face and my chest. Sore still both from accessing the port and a deeper pain that I can’t shake.

I haven’t slept a full night in I don’t know how long. In the mirror, I see the reflection of a woman I still don’t recognize. Short fuzzy hair, darkened nails and a round face, moon face they call it; they, the others, like me. I don’t like this woman. I feel a pit in my stomach, a feeling that’s familiar. A cross between angry and sad, my eyes water. It’s time to make my way back.

The more I sleep, the less I have to think. As I lay back down, I hope the next interval comes further out. Maybe I’ll sleep until I have to get up with the kids, but it’s unlikely. I stare up at the ceiling wishing I could cry. I know if I allow myself to start, it could be hard to stop.

The silence is deafening, I lay waiting and the hours pass.

This happens almost nightly, sleep escapes me and I just lay here. I watch him sleep and sometimes catch a giggle. I stare and watch his face as it changes from serious, to a smile and then fades away as quickly as it came. I lay there and wonder what he dreams of so vividly, and I hope it’s of our son (or daughter) in heaven. My heart aches more now, so I imagine something different. A dream where he is a popular Star Wars character, now I giggle.

To be honest, it could be much worse. I’m already expecting good news from a future scan. In fact, yesterday might have been my last chemotherapy session. I feel a sense of deep guilt at that realization, so many fight for so long and here I am, possibly done. I don’t know if I’m ready for what’s next, this “New Normal” the cancer community talks about. What I do know, is it’s in Gods hands now. So, I leave it up to him.

Where Vanity Goes To Die

I stand there looking in the fogged up mirror, staring back at myself. Unhappy. The words floating around in my head are harsh. “You look like a prepubescent boy. Short hair definitely doesn’t suit you.” “Stupid cancer,” I say loudly. As of late, this is how my shower routine ends.

I wasn’t always this way. Looks weren’t always this important. Unlike most people, I didn’t flourish in high school, I didn’t peak in college. In fact, I’m not sure I ever really discovered myself. I do, however, believe I was getting there. It’s funny, people tell me, now, “it’s just hair.” While I do agree, for me, it’s much more than that.

I dyed my hair the most ridiculously bold red for the very first time in the summer of 2012. My then-best-friend said, “Red will really damage your hair!” To which I responded, “It’s just hair! Live a little!!!” I felt more alive than ever. Like an entirely different woman. Confident, young, and fun. I felt like I was finally something more than just someone’s wife and mom (Not that there’s anything wrong with that). I was finally tapping into my own personality. It’s interesting what a new hair color will do for your self-esteem. That same summer I got my first tattoo; a blue rose with a deep personal meaning.

He lowered the needle towards my skin and asked softly “Are you sure you’re ready?” My hands felt sweaty and my voice broke slightly, but I held my resolve. “Yes, do it.” I answered. “So why a blue rose?” He asked curiously. I looked around the room, smokey from cigarettes, lit by a bright fluorescent light. I saw our friends laughing, cracking jokes, oblivious to the inner battle I was fighting. “There are several reasons really, but they all tie in together.” I didn’t go into detail then, and I have seldom told anyone what the meaning was behind my blue tattoo.

One brisk October morning, I woke, my chest aching furiously. Hot pink hair sprawled across my pillow, beads of cold sweat on my forehead.

I have very few memories of my father calling me pretty or even telling me he loved me. Or my mother for that matter. I was raised never hearing it. So, it was not something I considered myself to be. I struggled with confidence. My tattoo is for my grandfather of whom I have very fond memories. He told me often I was pretty, he said he’d always be there, and that I’d be the most beautiful bride when the day came. The day came but he wasn’t there, at least not physically. He passed when I was just 8.

My tattoo represents me mentally training myself to believe I was beautiful, when I so rarely heard it. A blue rose is not a natural occurrence, and neither is having love for myself.

After that bold red hair, there were several others: plum, blue, teal, fuchsia, purple, green, and pink. Every time someone would say, “Again? Your hair is just going to fall out one of these days!” Each time my response was, “And if it does, it’ll grow. It’s just hair.” I changed it obsessively, color after color, always trying to find the right shade. Searching for the one that made me feel “Beautiful”. The one that would convince me.

Then, one brisk October morning, I woke, my chest aching furiously. Hot pink hair sprawled across my pillow, beads of cold sweat on my forehead.

Cancer.

My era of self discovery came to a screeching halt. After 3 chemo sessions, I took my husband’s clippers and told him I was ready. “Can you do it for me? Do you mind?” I bent my head over the garbage can, not awaiting a response. “Yeah, of course. Are you sure?” “Yes, it’s just hair. Right?” I said. “Yes baby, just another wild hairstyle,” he assured me. Tears streamed down my face and into the garbage with my hair, with my vanity. With the woman I used to be. The woman I was only just beginning to know and love.

Lately, I’ve been dreaming. Of having long pink hair. Of being beautiful. It’s a new chapter in my life, but it feels a lot like I’m reading the same one from years ago. My thoughts keep jumping back to “If I had my hair, maybe I could just be myself again. Everything might just possibly go back to normal.” I just don’t know what normal is. Every day I consider taking bleach to it, finding another exotic color and masking my pain.

It just seems pointless to try. It’s hard trying to heal emotionally from a disease that affected you physically. Especially when every glance in the mirror reminds you of it. It’s a challenge I now face. Yes, I survived. Yes, I know how selfish and ungrateful I sound; upset about my hair when I’ve got life! Now, I’m convinced it wasn’t just hair.

“Vanity is becoming a nuisance, I can see why women give it up, eventually. But I’m not ready for that yet.”~Margaret Atwood

With Love – Entry Twelve

anxiety after young adult cancer

I have come to the realization that I’m completely alone. Not so much physically but emotionally. Does that make sense? I felt like this often growing up. Outnumbered, comes to mind. My parents had each other, as did my brothers, I always felt out of place. Odd man out.

Today, my husband tried to set me up on a play date. It sounds extremely inappropriate except it’s not, it’s pathetic. Lately, I’ve been depressed. He can see it, I can feel it and we’re both pretty tired of it.

I’m at a point in my life where I am healthy and thriving, medically speaking. Especially considering the last few months. So, why don’t I feel relief? I should be thrilled but I’m not.

I became emotional a few days ago, I cried and pouted and told my husband how crazy I felt but that maybe all I needed was a break. Almost instantly I thought, “How selfish of you Jeanette. The kids are your life, you love and cherish them. You shouldn’t need a break!” Still there I was at the kitchen table, distraught and confused at my own emotions. Staring, with eyes burning at my husband, who was busy making plans to fish. Myself, jealous at his unwavering dedication to the sport (if you can call it that).

“This is what we’ll do” he says, “I’ll call my friend and see what his wife is doing this weekend. You and her can hang out while him and I take the kids fishing.”

How do I tell him no? As much as I like her and I want a friend, how do I explain that I’m not ready? See, in my mind, all I can imagine happening… Is what happens with almost every other person I encounter. They ask how I’m doing? They ask what’s next? Am I in remission? They tell me how hard it must have been, how brave I am and they try extremely hard to sympathize.

Meanwhile, I just want to talk about Grays Anatomy and McDreamy! I want to talk about celebrities and their failed marriages. I’d love to have a glass of wine and talk parenting mishaps, like when I accidentally gave my kids the wrong lunch bags. I’d love to be invited over to talk marriage hardships and gossip, like normal women. I WANT to leave Cancer out of it!

My ideal “friend date” is a movie night in with candy, cheesecake and popcorn, because who says you can’t pair them. Giggles and laughter that bring tears to my eyes. Good food and great company. My family and theirs. I don’t do well in social situations, I’m extremely awkward. I can’t do it alone. He can’t just drop me somewhere and go. Not right now.

It would help, if I’d been invited at all and my husband hadn’t set me up. I’m the type of person who strongly dislikes invading ones space. While I want friends, I don’t want someone to be a friend because they feel sorry for me. Would it be horrible if right now I just said “I honestly don’t want friends, I’m simply not ready”?

I just want some time to pick up the pieces of my broken puzzle and put it back together. Patiently. I don’t want to feel pressure or stress. Most days, I don’t even want to leave the house. Maybe I just want to wallow.

Just give me a moment.

This piece was originally published here.

Finding Courage, Facing Cancer

facing cancer

My story with Hodgkin’s Lymphoma begins “officially” on the morning of October 25th 2014, when I began to feel the familiar stabbing pain in my chest. The pain that would drain me of all my energy and knock every breath out of me. One of my many symptoms, unbeknownst to me. Each pulsating shot more debilitating than the last, left me weakened. This morning, when I attempted to lift my head of my pillow and failed, was my turning point. It was after 7am and I could already hear shuffling just outside my bedroom door. I reached out my arm for my phone, tucked beneath my pillow, I’ve read in articles it could kill you, should the phone overheat and start a fire. But then, I’d come to find out, I had much more to fear.

In my phone, I find my husbands number on the recent calls list and hit send. He’s a Drill Sergeant in the U.S. Army and has been working a 24 hour shift, poor guy, he must be exhausted. I hardly hear a breath and I’m already speaking and he’s listening, “I can’t take this anymore, can you meet us at the hospital?” He’s concerned and tired, I can hear it in his voice, “Wait for me sweetheart, I’ll pick you up and take you.” I don’t wait. I text him as I’m leaving,  I’ve mustered up all my strength to get out of bed and round up the kids, 5 and 9, a feat in-and-of itself. To this day, I have no recollection of the drive there.

My memory picks up in the ER, I’ve already been seen and I’ve had both an EKG and X-Rays done. My husband and two kids sit beside me, the kids are sitting quietly on the floor, keeping themselves busy on their daddy’s phone. Just then, a pulmonary specialist walks in, I recognize him almost instantly. I saw him for the first time 6 months ago, here, at this very hospital. At the time he told me I had inflammation in the lining of my lungs and had mentioned an anomaly in my X-Rays, his voice echoes in my memory. “Speak to your primary physician” he had said. Today, he seemed disappointed. “I told you to see your doctor.” I had, I did. I cried to her in panic, begged her to do something, she insisted it was my anxiety. “I’ll double your dose.” Angry, I demanded she take X-Rays of her own, or request the hospitals. She was reluctant but agreed, that same day I had more images taken, I didn’t hear from her again. Even after I phoned her and left messages. Nothing.

“There is a mass, roughly 9 by 11cm attached to your right lung” he formed a circle with his hands, fingertips touching, “about this size, like a grapefruit.” A mass? Like, a tumor? “We’ll conduct a “Fine Needle Biopsy” to determine what exactly it is.” He continued.

My next memory is going under and waking up. Now, a couple hours have passed and another physician enters the small room. An oncologist, who was to become, my oncologist. “The FNB was too small a sample but we’re fairly certain it is indeed ‘Hodgkin’s Lymphoma’ we just aren’t certain of the type.”

This can’t be happening.

From the corner of the room I see my husband look up from his phone, his eyes glazed over, he’s trying hard not to cry. “Hodgkin’s Lymphoma? Cancer?” He says inquisitively.

“Yes.” She responds, it is here that my journey begins.

Welcome Jei!

Hodgkin's Lymphoma

Lacuna Loft is excited to continue introducing more young adult voices! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Jei!

—

Hi! My name is Jeanette, but you can call me Jei. I was diagnosed with Classical Hodgkin’s Lymphoma in late 2014, the “easy” cancer. Boy, am I tired of hearing that! I received ABVD as treatment, 6 cycles were scheduled but by my 4th I’d had a clean scan, that was followed by 17 rounds of radiation. Still, the chemotherapy for Hodgkin’s Lymphoma has left me with lasting side effects, like neuropathy, weak lungs and chemo brain. I’ve been through a lot, from the initial misdiagnosis to the loss of a pregnancy at 12 weeks. I am an Army wife of 12 years (yikes), and a mom to two lovely and adoring children, 3 dogs and a dramatic kitten (as if there is any other kind). I work full time in Visual Merchandising and enjoy writing on my down time, in my little quiet space at home.

My home is where the Army sends us, right now, were getting a taste of southern hospitality and you know? I kind of like it. My ability to not only adapt, but thrive makes me a survivor. Cancer, is just another hurdle.

I hope that by sharing my story I can bring awareness, not only in regards to cancer but over-all health, as well as medical care. I struggled to be diagnosed, then again during diagnosis to be heard and now that I’m a “survivor”, I am faced daily with people who expect me to return to my old self. I’ve had to be my own “patient’s advocate” when others wouldn’t advocate for me, and yes, at times I too have failed myself. Stick around, I have a lot to tell.

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.”

-Maya Angelou