If I read a book and it makes my whole body so cold no fire can warm me I know that is poetry. If I feel physically as if the top of my head were taken off, I know that is poetry. These are the only way I know it. Is there any other way? –Emily Dickinson
In October of 2017, I found out I had hodgkin’s lymphoma. After two years of feeling sick, my health slowly got worse and worse. Now, I was officially a cancer patient. A week prior, I had an excisional biopsy on a swollen lymph node on my neck…Immediately after the surgery, my surgeon met with my husband and parents to let them know she felt confident that I had cancer, based purely on how my lymph nodes looked to her. I woke up from surgery, and my husband came back to see me. A few minutes later, my parents came back to see me, but my brother was also there. I immediately thought something may be wrong. My husband stayed with me after they left, and he told me the surgeon was sure it was cancer. I had just started to “come out” of my anesthesia, and I immediately fell apart. I was crying in my husband’s arms, as he helped me put on my clothes post-op. The next week was torture, as I waited to hear whether or not my surgeon was right. I got the call from my doctor, while sitting inside a coffee house on a sunny afternoon.
I had to step outside, because everything felt surreal. She told me the biopsy confirmed that I did, indeed, have cancer and that the predominant form of treatment would be chemotherapy for sure. I started sobbing, sitting at a table outside and not caring who saw me. It was as if the world had stopped around me. I hope I never have to relive that moment again. That was early October.
Now, it’s June–9 months later–and I just finished 6 months of chemotherapy in May. I found out I was officially cancer-free, on June 7th! Woohoo! Right!? Well, yes, I’m mostly excited. And grateful. But I’m also still tired, without hair, bloated, and getting sick non-stop still. This first bit of time post-chemo has been a bitch. Oh, but not like the bitch that was chemo…I had a very rare and sensitive reaction to my 4 chemo-drugs (ABVD chemo). I ended up in the ER, after my first round of chemo, because I was dizzy, my mouth was itching and swelling, I was having trouble standing, I was having trouble breathing, I was running a temperature, I could barely swallow, and my teeth and bones felt like someone had hit them with a hammer, and my entire body was covered in red rashy bumps. I looked as though I had a skin disease. No, I’m not kidding. Wait, but chemo is just supposed to make you nauseated and tired, right? Yeah, that’s what I mistakenly thought, too. They took me to a room immediately at the ER, and my heart rate was in the 150s, resulting in me having to be on a heart monitor. I remember struggling to get a breath and panicking, because I had never experienced that in my entire life. And when she inserted pain meds into my IV, I was having an even harder time breathing. I remember having a mask on and staring at my parents but wondering if I was going to die. That’s how much pain I was in. My husband was selling art at a market that day, so he wasn’t present yet.
The entire day is a blur. Before going to the hospital, I vaguely remember lying in the kitchen floor at my parents’ house. I remember my dad coming inside and picking me up, helping me to the car. Oh, and this was just two weeks after I was released from the hospital for a bad port surgery. A port is what they use as a permanent IV for chemo, so they don’t have to insert an IV every time you get chemo…Chemo literally burns up some people’s veins, so a standard IV is not ideal…My port surgery went bad, and I ended up in the hospital for a week, with a collapsed lung, and in some of the worst pain of my life then, too. A doctor literally broke through my chest wall with a metal rod, WHILE I WAS AWAKE, to insert a chest tube, into my lung, through my ribs. Preposition on preposition, I know. No offense, moms, but I’m pretty sure I’m all set for childbirth now…this is a sneak peek into just how painful and miserable chemotherapy was for me. I could write for hours and hours about the pain alone, other hospital stays, and every little concrete detail of what happened but, now, being on the other side of treatment, I’d like to talk to you about how painful this experience was mentally and emotionally.
I’ve learned that pain is poetry.It exposes all that has gone unexposed.
Please don’t stop reading. You don’t have to see me cry.
But I am crying today. I’ve cried a lot.
And I’ve learned that pain is poetry.It exposes all that has gone unexposed.
Yes, Emily Dickinson, my whole head feels as though it has been removed. The coldness of the realities I’ve been exposed to, like prolonged physical pain and heartache, have left me feeling exposed. Being stripped of my physical appearance, without hair and with scars, I am even more exposed, having to face who I really am beneath it all. And that is poetry. Poetry is what fills the space. Poetry stretches and connects us. It points to that which is hidden and seemingly unknowable but knowable. It’s paradoxical just like suffering. I can tell you, without a doubt, that I know joy more deeply because of my pain and suffering, and that is paradoxical (a seeming contradiction that works together towards truth). Am I losing you yet? I promise I didn’t take one of my medicinal edibles (don’t even get me started on the gift that is marijuana for cancer patients) before typing this. But I totally get what Emily Dickinson means now….
Every day of chemo suffering didn’t feel poetic. However, the beauty of staring at myself in the mirror, looking like a cancer patient and learning to be okay with that has been a poem for me. It has been a beautiful process that often included days of breaking down. Every stanza was different. Every day was different. But now, it all makes sense. I can think about who I was before cancer, and now I see a totally new person. Not just in how I look. Yes, I look very different. But I’m more comfortable with who I am than ever before.
Losing my hair was traumatic. I had long, very thick blonde hair before chemo. I got compliments on my hair pretty much…every time I left my house. I slowly started waking up to huge clumps of hair on my pillow in the morning. I couldn’t brush my hair without huge clumps coming out at once. I finally took the plunge and just started cutting and then buzzing my hair. It sucked. But it was also empowering. I was sick of hair being all over my house, falling out. I don’t think I have to explain how much our hair defines us, especially being a 27-year-old female. But like I said, it was both sad and empowering. Most of my cancer has experience has been me coping with all the “and” and “but” aspects. It was never one thing or emotion. There was always a mixture of emotions I was sorting out.
Don’t let me fool you. Just because I’ve learned about myself and can see how this suffering has had a deeply transformative effect on me, doesn’t mean it has been easy. It has been hard. Really fucking hard. Without sounding egotistical, I will tell you that I considered myself to be a relatively attractive woman before chemo. Once I was totally stripped of my outward appearance, I realized what it felt like to no longer be noticed for my beauty. Instead, people would do double takes of me when I entered a room, because I looked so sick. I had zero hair. No eyebrows or even eyelashes. I had dark, dark circles around me eyes. My skin looked greyish. My face and mid-section became incredibly puffy and bloated from the insane amount of steroids I was on. Now, people were giving me sympathetic smiles when I walked into a coffee shop, because I was obviously very sick. I no longer noticed men staring at me, which I used to be incredibly aware of when I tossed my hair around or was fixed up.
People used to compliment my appearance. But now, I could tell most people felt uncomfortable around me, as if they didn’t know what to say or do. This experience was terribly awkward and painful. I felt the weight of my existence effect a room of friends or strangers when I entered.
This is why having cancer has forced me to take a deep, hard look at what I had relied on and found comfort in day-in and day-out, prior to treatment. I had also struggled with an eating disorder for years. Anxiety and control surrounding my appearance had plagued me for years. Now, my physical appearance was totally out of my control. Furthermore, I ended up gaining weight during chemo instead of losing weight, because of how many steroids I was on. Apparently this is really common for young females, especially if you were active before treatment. Chemo made me pretty much inactive, I retained water (was having to drink about 150 oz. of water per day), and the steroids slow down your metabolism and create fat deposits in your abdomen. So hard. I truly felt like I was falling apart, being pushed to my absolute limits. This is all while being in the worst physical pain of my life.
In some ways, I feel more in tune to reality than ever before. I feel more at peace with death. I feel more comfortable in who I am. Simultaneously, though, I feel very detached from people and daily life. I’ve felt trapped in my house for almost a year. I’ve been in so much pain, at times, that I actually cried out to God one night in the hospital, telling God, “just take me now, please.” I know that sounds crazy to some of you. But I really came to a place where I wanted to die instead of be in pain. Going back to work and normal life, after this experience, is very strange. Everyone else’s lives have pretty much stayed the same. Nothing major has happened. But I feel like I went to hell and back, and now, I’m trying to just act “normal” around everyone. But my thoughts and emotions feel heavy. Nothing really feels “light.” But you learn that “lightness” of being is what is attractive to most people. Most people don’t want to talk about pain and death. So you learn to be alone with your thoughts, but you also learn to share with those who make themselves present and available. It is all a part of healing.
I have a lot of fears moving forward. But I have a lot of joy. I desire to live simply, finding joy in the small tasks I’m capable of doing now. I sometimes fear my cancer coming back. I don’t fear death. I just fear having to go through this experience again, even though I feel grateful for what this suffering has exposed.
If I could give any advice to people, especially other women, it would be to stop sweating the small stuff. Embrace your body, your hair, where you are in life. Love yourself fiercely. Take care of your physical body but also take care of your mind. Share about your pain. Vulnerability begets vulnerability and forms the deepest relationships. Run from people who make you feel inadequate. This may all seem cliche, but I ask you to truly take advantage of being in good health. Garden. Cook for yourself. Invite friends over. Share your home. Go on trips. Save money but don’t be afraid to spend your money on yourself. Don’t fear pain and suffering. Feel it deeply. Share it. Share, share, share. Rest. Stay up late. Follow your body and heart’s needs. You truly never know what will happen. Fear of the unknown can plague you. OR the unknown can inspire you to truly LIVE poetically. Find the meaning in every word, line and stanza, even when nothing makes sense at first. Someday, it will.
XO LIZZY LYNN