“What’s getting chemo like?”
Aside from “How are you?” this is the number one question I get.
As a bright-eyed, scared shitless, newly diagnosed cancer patient, I often asked that same question – to survivors, to Alexa, to Google, to my oncologists and medical team. No one gave me a straight forward answer. Now I know why.
Each cancer case is unique, so depending on your age, health at the time of diagnosis, type of cancer/chemotherapy drug(s) given- the experience is different for each individual and it’s really hard to predict who will react to what and how. Some people had it way worse, others- slightly easier.
I thought long and hard about describing the experience of going through chemo. I’m sure most cancer patients and survivors would agree, unless you’ve had chemo – it’s impossible to explain to someone who hasn’t been through it. There really are no right words. And for your sake, I hope you never find out first hand.
The best way I can describe going through chemo is like being pregnant, going through menopause, being slightly drunk, extremely hungover, having arthritis, the flu, food poisoning, training your gag reflex to defend against the constant bitter metal taste in your mouth while trying to not have a panic attack all at the same time.
There is no sugar coating it. Chemo sucks. You know you need the chemo so you won’t die but getting poisoned at x week/day intervals is no picnic. But before you get too scared, know these two things. Doctors have gotten really good at 1) helping you manage the side effects with medicine and 2) calculating just how much chemo you can take for it to be effective while not killing you. Plus, at the end of the day, chemo is meant to save your life – so focus on that and imagine those little droplets of toxicity sweeping through your body and blasting the shit out of all the cancer cells.
The side effect possibilities are a mile long but one of the things I want to bring up is that going through chemo is as much about the physical side effects as it is the mental side effects. The mental side effects are actually much harder for me and no one warns you about it.
The physical side effects range widely. As mentioned, everyone’s experience will be unique. Even each round is different, some much harder than others. There were times when I had minimal side effects while other times I was so sick I’d be sweating, shaking and collapsed on the cold, tiled bathroom floor just praying that I wouldn’t pass out from the pain. I’m listing a few of the major ones but there are a plethora of possibilities so keep track of your symptoms and make sure you reach out to your medical team if something feels off. With chemo, some people vomit and get super nauseous. The chemo can’t differentiate between fast-dividing cells so it will attack good ones and bad ones all the same. That’s why people lose their hair, their nails, have major GI issues (diarrhea/constipation), taste changes, suffer extreme dry skin, or get mouth sores. Some people have neuropathy (tingling/numbness) and while L-glutamine was certainly helpful, there are definitely times your body feels like it’s being attacked by tiny pins and needles or your limbs fall asleep. Others get allergy/flu symptoms and you’ll need plenty of eye drops and tissues. You’ll most likely get something like Neulasta that boosts your white blood count so you are strong enough for the next chemo. However, it will make your bones hurt, A LOT. Claritin helps but just be prepared. Acupuncture is also effective even though I hate needles. Some people lose weight, some people gain. Eat what you can, try to be healthy and exercise as much as your body allows. Because my breast cancer is triple positive, I also experience menopausal side effects (like hot flashes/aches) and treatment for that will go on much longer after chemo ends. Additionally, chemo diet is the same as a pregnant woman’s (maybe a little bit more strict) – which is salt in the wound for someone who loves food (I miss you sushi 😦 ). There are days where you can’t lift your head up, so don’t be afraid to turn off the outside world. After all, this time is about you getting better, so learn the joy of standing still.
The mental side effects are something the doctors don’t list for you when they go over what to expect during chemo. In fact, I was so scared of the physical side effects, I had no idea how much I’d have to fight mentally. I’m sure this differs for everyone but the complete mental exhaustion and intensity of fighting cancer is something I could never have prepared for. On chemo day I’m usually okay but it’s the week of to 14 days after that I find the hardest. When the side effects start to hit (around 27-32 hours post-chemo for me) I feel like I am being sucked into a dark vortex that I can’t climb out of. I am so sleepy but struggle with insomnia at the same time. I feel scared, anxious and sometimes I find myself figuratively and literally gasping for air. My heart pounds incessantly and half my mind is screaming at me to just give up, drown, cry, admit defeat, and that I’ll never get out of this. The other half of my mind makes every effort to mentally fight back. I try fervently (but mostly failing miserably) to grasp at the light. The light in the form of all my favorite moments in life thus far and all of the things I still want to accomplish and to experience. Your loved ones are your lighthouses during those darkest nights (and days). Never forget that. Sometimes, I manage to glimpse texts/messages of funny/inspiring things loved ones have sent me. Other times, I look at the crazy amount of cards my friends have sent filled with photos, memories, and inspirational messages. They contain beautiful fragments of my life – a life so worth fighting for. Staying positive is a struggle while fighting through this period. I only managed the minimum- to not drown, to not give up and to merely survive through the seemingly hopeless night(s). The most important thing to remember is the body is amazing. It recovers, the pain memories fade, the fog lifts slightly and you’ll feel hopeful again. At least until the next round.
I want to share this because so many of you asked about chemo and I could not find the energy or words to explain to you at the time. Additionally, I want everyone going through this to know you aren’t alone. There are nights when we all want to give up. But don’t. Do your best to find your lifeboats in that crazy chemo storm and weather it! Your rainbow at the end is hopefully a cure or at least claiming your life back. Overall, chemo is a blur, you never feel completely like yourself and chemo brain is real! You’re pumped with meds, you sleep a lot, and most of the time, you can’t remember if your phone is charging or in the refrigerator. But know that like every storm, it will pass and the sun will come out again.
Hopefully if I am lucky, I won’t ever have to weather this hell storm ever again. No matter what the future may hold, the silver lining found is I’ve truly learned the meaning of mind over matter and for the rest of my life, I will continue to be aware and thankful for each moment I feel healthy.
I put together a little video of my chemo experience. Disclaimer: I AM NOT video-making savvy. Nevertheless, I hope it inspires you to know that while there are plenty of not-so-great times. A little smiling and a lot of love and positivity can go a long way. You end up being surprised at the kindness that is shown but most of all, you end up surprised at just how strong and brave you can be in great times of adversity. The next steps in treatment are nerve-wrecking and chemo just a small part of my cancer treatment. However, we can’t stress too much about the hand we’re dealt in life. We can merely play it as gracefully as possible, take things one step at a time, and celebrate each victory as we go. As always, thank you so much for your love and support and cheering me on.