Side effects
A plethora of oral chemo drugs.
In no particular order, here is a list of all the side effects chemotherapy, immunotherapy — and all their meds — blessed upon me:
Bone pain.
Fevers.
Chills.
Body aches.
Joint pain.
Change of taste. (Especially the first day after chemo. Everything tasted like metal. Water tasted like metal. Slightly spicy things, like my once favourite, Jalapeño Cheddar Lays, were like fire. It felt like my tongue was sandpaper when I’d eat those. As my body got used to the meds, this changed. By the last round it wasn’t as bad as the first).
Neuropathy in my fingers. (One day I was struggling to cut the kids’ fingernails. I couldn’t press the nail clippers down. At first I thought “oh these must be broken” followed quickly by “nope. It’s my fingers, they don’t work anymore.” 15 weeks after my last chemo, I still can’t open a bag of chips or use the garlic press).
Not being able to feel my fingertips. (It’s like each one was tingling or being pricked, except for some reason, my pinky fingers).
Loss of hair… in all places. (My cousin asked me one day “do you still have nose hairs?” I texted back “let me check”, I walked to the mirror, took a look and realized… I did not).
Loss of eyebrows. (Wow people look weird without eyebrows. Who knew?)
Loss of eyelashes. (The worst. Literally every speck of dust gets into your eyes and your eyes are itchy and red all the time. Also the heat is hotter because nothing is protecting your frigging eyes).
Dry mouth. (Worse than the most potent weed would give you. Yes, mom and dad, I have tried it. No, it’s not my jam).
More sores.
Throat sores.
Neutropenia.
Light-headedness. (I can’t tell you how many times I stood up and felt like I was going to fall over. Thank you walls, for holding me up).
A scar in the place where I had the bone marrow needle.
Three little scars on my forearm from one of dozens of IVs I’ve had this past year. (I’ve never been afraid of needles, and honestly, I’m still not. But by the last round of chemo, I was so sick of being pricked. All the bloodwork. All the IVs. All the x-rays, CT scans, PET scans, I just didn’t want to be prodded anymore).
Fucked up nail beds (fingers and toes — There are rings in my nail beds. Like a rainbow, but different shades of pink. And not nearly as fun).
Diarrhea. (Which no matter how many times I spell this, I can NEVER spell it correctly. The first few chemos as my body got used to everything I would always have a “diarrhea day”).
Constipation.
Hemorrhoids. (So bad that for months after when I went to the bathroom I would bleed. It. Was. Brutal. Willis and I took the kids camping between chemo five and six. Looking back I realize I looked sick as hell and I felt sick as hell. But hey, I went cycling and caught my kid sliding down the water slide into the pool and thought I was okay and still made happy memories. Anyway… I went to the bathroom at one point, it was a porta potty, it was very smelly. There, breathing through my mouth, I had to push through constipation and hemorrhoids, to the point where I was sweating and had to take my shirt off and keep it in my lap. It was comparable to the first poop after childbirth, which heads up, feels like giving birth again. It took me 45 minutes. My family was worried when I waddled back to the camp site. I explained my total horror show and promptly took a nap).
Freezing cold night sweats.
Hot flashes.
Chemo brain! (There was a time when I couldn’t remember what word I was going to use next. Or what I was talking about. Or why I opened the fridge. But to the MAX. I was so worried this would last. I’m usually quick on my feet. I’m quick with a joke or a quip. My favourite thing in life is making people laugh. I feared this would take a big piece of me away — I’m happy to report it didn’t. Quip off anyone?).
Weight gain. (Steroids)
Swelling. (All. Over).
Tooth and gum pain. (At one point I was reading about tooth and gum pain on one of my NHL group Facebook pages and a BUNCH of people said they LOST SOME OF THEIR TEETH during chemo. I was shaking in my boots for a while. Happy to report, still have all teeth).
Cold sores.
Fatigue. (The worst exhaustion you could ever imagine that is impossible to explain unless you’ve gone through chemo. It is nothing like anything I have ever experienced before and yes, this is coming from a woman who breastfed twins every three hours in a 24 hour cycle for six-weeks straight and thought — many times — she’d lose her mind at 3:30 AM. Chemo exhaustion is so much worse than that. Still wretched, but different somehow).
Vaccine ineffectiveness. (Yep, you read that right. In the middle of a once in a generation pandemic, my immunotherapy drug, Rituximab, that was saving my life, also makes my COVID-19 vaccines ineffective. So cool. So so so so so cool. So here I am 15 weeks post-treatment. I’ve had my third booster shot and still have no idea how well I’m protected from this relentless virus. Maybe my vaccines have a 20% efficacy, compared to the general population with 94%+, maybe it’s less, I’ll never really know. The antibody tests only measures a portion of the effectiveness and isn’t a good measure so… here we are, still acting as if I’m unvaccinated all these months later. Waiting for my immune system to be back online — which will take three to six months according to my team — and hoping that soon, we’ll be ready to dip our toes back into the world of the vaccinated. To finally return to the world of the living after being in limbo for so so so long).
When people would ask how I was when I was going through chemo, my go-to would be to say “I’m really tired” because that’s one constant, that I felt at all times. Sometimes they would say “oh, if your only side effect is being tired, that’s pretty good.” I didn’t have the energy to respond with all of the above, so I smiled and I nodded and I knew they meant well. If you ever said this to me, please do not feel bad, you didn’t know. You couldn’t know.
I once met a man at chemo who has been receiving life-saving chemotherapy once a month, every month, for the last nine years. He told me the doctors had given him a chance of surviving for three years when he was first diagnosed, he was proud to have made it so far. Then he told me, “I tell my friends all the time, the medication that’s saving my life is going to kill me someday.” I immediately understood. The side effects from chemo are so vast and so random, no cycle is the same. No person’s body handles it the same, that if you needed it for years and years and years, eventually, it would be the thing that kills you.
One of 18,906,248 IV’s I’ve had this year.
Thanks, life-saving poison. :)
Near the end of my chemo journey, a friend of mine’s father found out he had terminal lung cancer. He didn’t want to do chemo. The whole family was upset, understandably, because let’s face it — it’s harder to be the ones who are left behind than the one who leaves. I waited until they made peace with his decision before I told them how I felt. As a person who underwent chemo at 36, I many times questioned how a person in an older body would fare. It was hard enough as a healthy, young woman going into this hell. Because I’m young I have the chance that I’ll out grow all these side effects. But I understood why a 77-year-old who wasn’t sure how much longer chemo would give them would not want to do it.
What if what chemo gives you is horrible side effects for the rest of your life? Ones that make it impossible to enjoy the time you have? Ones that make it so you can’t lift or hug your grandkids? This friend and their family are my family. I was so privileged to have been their surrogate daughter as a child. I still am privileged as an adult. They prayed for me. They had their friends pray for me. Every. Single. Day. They probably pray for me still. They are much are the reason I am who I am today. You know who you are and thank you thank you thank you. As I write this I have grateful tears in my eyes because my life has been made so much more special because of your family. I have a vivid memory of my aunt’s funeral when I was 13. I was walking down the aisle of the church, behind the casket, just wrecked. And when I saw this friend and her mom on the outside of a pew, I instinctively slid into the pew and weeped as she held me tight. I can never describe how important your family has been to me. How lucky I am to know you all. For your hugs. And your unconditional love. In some of my toughest moments, you were front row center and you held me and let me know I was okay. Or I would be.
I was lucky enough to see them this summer. With masks on and tears in my eyes I hugged them like I never had before. I told them how much I loved them. How sorry I was they had to go through this cancer hell. How much I wish it wasn’t happening to them. But in the end, I understood where this kind, joyful, bigger than life man was coming from. Chemo sucks and it’s no way to go out. So I’ll make plans to visit more. To tell you in person how much I love you. To let you know that no matter what happens, I will walk beside your daughter along every step of this road. She will always have me. And we will always have you.
So, in the end, I’m thankful for all these horrible side effects. The intermittent ones and the ones that are still with me. I’m one of the lucky few. I didn’t need surgery or radiation. The whole process didn’t take years. My kind of Non-Hodgkins Lymphoma doesn’t need constant maintenance, so hopefully, I’ll never have to go through this ordeal again. And I can count my lucky stars for the life-saving poison that made me feel so so bad, so one day, I could feel good again.