I’ve been keeping journal entries of the days I don’t quite feel like myself during my treatment with Hodgkins Lymphoma, which is cancer on the lymphatic system. People in the cancer community call it “the good cancer” because it has an over 80% cure rate.
How humans manage to compare tragedies to make themselves feel better is a mystery I do not think I want to understand.
To diminish one’s experience because their cure rate is higher is to diminish the experience of going into chemotherapy twelve times in my case to have drugs that cause severe nerve damage, depression, and fatigue pumped into me.
I write about my experiences so that I can acknowledge the pressure on my chest and then let it go. Most of the time, the pressure relieves itself because I find a solution to my problem. But sometimes, the pressure stays, and I let it stay until it decides it has something better to do than sit on my chest all day.
Chemo Two, Cycle 1B
After Chemo 2, your hair really starts coming out in clumps. Single strands fall out on their own and land on your shoulders and your pillow. Or a ball of hair just dangles at the end of your hair like hair does on a broom. So you remove it because who wants their hair to look like the bottom of a broom? The thing is your hair always looks like the end of a broom, so you keep pulling. Pulling at your hair is fun and kind of relaxing until you realize how much hair you’ve pulled out. But it’s not as bad as combing your hair. Huge chunks of hair will come out at once, whereas with pulling, the hair loss is gradual. Also, while combing, your head prickles and stings because your scalp is so sensitive.
Watching my hair fall out made my chest ache.
The type of ache you get when your head pounds from staring at a computer for too long. That’s how my chest felt. I know I use my chest a lot as a reference for pain, but to be fair, my tumor was wrapped around my heart and all the major vessels surrounding it and had collapsed part of my lung. I think the emotional stress creates a visceral reaction in my body because my body was used to the pressure of a mass on it. I am not a doctor, so don’t quote me on that.
I screamed. I cried. I stomped. I couldn’t stand the remaining hair on my head. I had bald spots. My hair had the texture of pubic hair. It clung to itself for dear life. It wasn’t mine.
My mom tried to console me with “I know what you’re going through.” No, you do not. Watching me go through this experience is not the same as experiencing it. I think that pre-cancer people assuming they know what you are going through is the worst part of this experience. The advice they give, the story of a family member who had cancer, the acknowledgement your experience is harder than what they are going through, are not helpful. My experience with cancer has not been as bad as the movies play it out to be. It’s livable even in the worst moments because I know the time will pass. My mom quoted some dude to me the other day.
The worser the experience, the deeper the valley. The deeper the valley, the higher the hill. The higher the hill, the higher the euphoria.
How true it is.
The next day, after all my romping, my mom found a solution.
I wanted to have hair cuts that I had wanted in high school but didn’t get because my dad threatened my college tuition. The plan originally was to have my brother and dad do these haircuts. My brother just didn’t get the point, and my dad would be damned if I had those haircuts even for a little while. She remembered a lady who cut hair at her house. And so the night after the romping, the lady cut my hair. I had a photoshoot, discovered I should never have some of those haircuts but have others, and said farewell.
Chemo 4, Cycle 2B
I woke up so fatigued even though the day before I was full of energy. Prior to chemo: I was the type of exhausted where after my 9 hours I could close my eyes and fall asleep on the toilet. The juxtaposition between the days broke me a little. Then I learned from my oncologist that I had ANTICIPATORY FATIGUE. (In retrospect, I did not. I was on a new medication called olanzapine which reduces nausea and causes extreme fatigue. I didn’t know fatigue was a side effect.)
I was so scared of Chemo 4 that my brain TRICKED me into believing I already had medication in my body.
To be fair to my crazily negative mind, at Chemo 3, my nurse may have pumped the bugger-looking viscous premed too fast, and it made me nauseous. (In retrospect, I don’t think she did. I just should not have eaten so much during chemo. I find that when going to chemo, eat a light, bready diet.) That night after Chemo 3, I was holding down vomit. Day 3 after Chemo 3, I was emotionally fraught with the dexamethasone, an anti-nausea med that also causes depression. I could have beaten Zendaya for that Emmy with my performance.
This time around with Chemo 4, we learned from those mistakes.
I got more anti-nausea medication. I asked my nurse to pump that bugger med slowly. And yet, I still feel a slight (anticipatory?) nausea. I wasn’t as tired after chemo. I’m not that constipated today. But a little part of me is still scared.
Just goes to show you how STRONG our minds are… IMAGINE what would happen if we stopped anticipating and accepted what was to come. Imagine the PEACE we’d feel in letting go. Imagine being filled with only POSITIVITY. We’d live in the moment.
The reality is is that we’re always going to have both positivity and negativity, BUT we can TRAIN our minds to FOCUS on the POSITIVE. Let ourselves feel sad; feel the pain, and remember that this moment is temporary
. If we let something PULL us down and KEEP us there, we’ve given complete power to it. We’ve lost.
The SCARY part is our MINDS will aid that thing to keep us DOWN. I don’t know about you, but I get PISSED when something/someone controls me. So just imagine a world where you FIGHT by LETTING GO because letting go leaves SPACE for POSITIVITY.
Chemo 7, Cycle 4A
Today was Day 2 after Chemo 7 aka Day 3 of Cycle 4A. I had a meeting with my professor. He said, “You’re looking great. Better than the beginning of the quarter.”
He basically summarized most of my journey with Hodgkin’s Lymphoma. There are definitely moments like today Day 2 after Chemo 7 aka Day 3 of Cycle 4A that are miserable. Some moments I feel so weak I can’t get out of bed or talk even though I was able to go on a walk the day before.
The shame of feeling weak really affects me.
I think this Denny Duquette line Grey’s Anatomy sums me up, “I’m a man. I’m a strong virile hoarse of man stuck in some weak sick bastard that I don’t know, like, or recognize.”…except I’m a woman, but still, the essence is the same. When I was diagnosed with Hodgkin’s Lymphoma, my sadness stemmed from the fact that I would have to put a hold on my life goals. Everything was going up: I had just gotten casted in a mini-web series. My stand-up comedy was improving. I cracked something in my creative nonfiction writing. My depression had decreased. Up! Cancer forced me to press reset before I even knew there was a reset button on life.
Everything about cancer is a reset button.
You go in for chemo. Reset for three days: Lie around, sleep, eat food that aren’t too spicy or oily. Then go about your days as normally as you can until your next chemo. Reset. You learn to adapt and accept your situation. However, there were days prior to Chemo 7 where I got caught up on the fact that a cancer friend has to go through only 8 cycles, whereas I have to go through 12. I know I have more advanced stage cancer than they do, but it SUCKS! Funny how you can get jealous over the most twisted stuff like someone going in for fewer treatments or pre-cancer people who don’t have to suffer. Comparisons. They don’t help anybody. They suck. They make everyone feel worse about themselves.
But what really sucks is that these treatments are saving my life, and all I want is for them to stop. No mental reset can stop me from recognizing that each treatment takes a piece of my soul. I don’t think I’m going to get those pieces back.
I just focused to the way I had felt prior to treatment:
- when my bones and muscles ached so much that they debilitated me because I didn’t take a ridiculous amount of tylenol (1000mg) and advil (400mg) two hours before the meds let up
- when I’d wake up in a pool of sweat and just go back to sleep because I knew if I changed I’d just wake up all sweaty again and being dry wasn’t worth the effort
- when the ongoing sparks in my chest were a reminder that I had a 15.5cm tumor that surrounded my heart and major veins and had collapsed a small part of my lung
I remember that these 3 days (Chemo Day, Day 2, and Day 3) are just 3 days. I get to go back to exercising somewhat the way I was pre diagnosis with the cancer in me. I have extra strength that I didn’t have when I was working at a high intensity with the cancer in me. And so I take these reminders and go about my day with a WHOLE BUNCH OF GRATITUDE (and a LIL BIT OF SALTINESS because I am human).
I have four more treatments left.
I’ve learned to reset my attitude towards chemo. I’ve come a long way since Chemo 4, I call myself a chemo junky because going to chemo means one fewer to go. I will admit though that a part of my mental shift is due to the fact that I am very close to the end. I’m ⅔ of the way there. But, a small part of me is still scared of chemo and its side effects. Who wants to wake up drowsy and not have control of their exhaustion the day of chemo? Not me, but olanzapine keeps the nausea away, so yes me?
If there’s one thing I’ve learned from having Hodgkin’s Lymphoma is that to keep the pressure in my chest away, I have to reset whenever a negative thought pops up. I look at those moments when I was in a valley and remember that I climbed a hill and felt euphoria in some capacity. So I guess in some capacity, having Hodgkin’s is worth hearing ignorant people call it “the good cancer.”
Kalpita Chakote is a senior Film major with a Theatre minor and a concentration in Creative Nonfiction Writing at Northwestern University. As she’s been battling Stage 4B Hodgkins Lymphoma, she’s been attending school, writing screenplays and creative essays, acting, performing stand-up, choreographing dances, making videos, and tutoring English. She likes to keep busy otherwise the chemo monsters creep up on her. If you’re interested in collaborating with her, she is so down. Just reach out on social media. @khemokalp or @kalpinthesea