Chemo Chronicles
Want the raw truth about chemo? It wasn’t as bad as I thought it would be. But maybe that’s because I have an active, and sometimes gory, imagination.
As scary as it is to have cancer, it’s almost scarier to face chemo. I’ve blogged before about the terror inherent in the word “cancer,” and I think chemo is another one of those loaded, fear-filled words.
Before I had breast cancer, there were just a few things I knew, or thought I knew, about chemo:
- You go bald
- You lose weight and look very ill
- You can’t eat much more than jello and Seven Up
- Your life is ruled by nausea and vomiting
Well, it turns out I was wrong. I did lose my hair, but the other things never really materialized. I didn’t personally know many people who had undergone chemotherapy, but I’d heard all kinds of horror stories. And, when I was 20, my dad died from a reaction to chemo. Just like in The Ghosts of Cancers Past, my ideas about chemo were that I would look and feel like something out of Night of the Living Dead. But it wasn’t like that at all.
So, in case you don’t know much about chemo, or you are facing chemo and have some of the same unspeakable terror I was harboring, I thought it might be helpful if I described a typical three week cycle. Before my first treatment, I read everything I could get my hands on, but most things were either very clinical, or scary (long lists of side effects), or sketchy. I really never came across a detailed, personal account of what it’s like to go through chemo. This is my experience, so it may differ from your experience, but still. Here goes.
BEFORE
- Game Face. I’ve been watching the Winter Olympics in Vancouver the last couple of weeks, especially the ski and snowboard events. My favorite thing is to watch the
competitors’ faces just before a race. They are prepping for the race of their lives, and the intensity, emotion, and energy emanates from their faces. It’s fascinating to watch. I found myself doing something similar the day before chemo. I was hyper aware of every action, emotion, and interaction as I counted down the hours before my infusion. It was as if I was preparing myself for a race or a battle, and I suppose in a way it is a battle to submit willingly submit yourself to something that is going to make you ill. The night before chemo especially, I felt as if I was putting on my game face, staying calm and controlled with an inner dialogue about how these drugs were an important part of my treatment, that my doctors were caring and knowledgeable, and that most people only experience a few of the dozens of possible side effects. I also prayed and put the whole experience in God’s hands. - Pre-chemo meds. My chemo regimen included a course of steroids, starting before each infusion and intended to prevent adverse reactions. This gave me extra confidence, but the steroids also made me feel a little hyper and short of breath at times. The answer? Ativan, a mild anti anxiety med. It’s been a lifesaver during the emotional ups and downs of chemo. I generally hate taking any sort of medication (I’ve never smoked a cigarette or taken an unnecessary med in my life), but this one was a huge help.
- Chemo buddy. As a rule, I’m sort of a proudly independent cowgirl type, but breast cancer has taught me a different way to live. I couldn’t have made it this far without friends, and for each of my four chemo treatments, I invited a friend to go with me. My idea was to make it almost like a fun outing with a friend, with lunch and maybe even a little shopping after each infusion. It worked! Life is less scary when you face it with a friend. Ditto the chemo infusion room, chock full of very ill people hooked up to infusion lines. It’s brighter and warmer with a friend in tow, and after the first treatment, it made me almost look forward to chemo day in an odd sort of way.
DURING
- Nurses. The chemo nurses were warm and wonderful. They greeted me like a long lost friend, and I even became particularly close to one named Sharee, whose smile lit up the room. If you’re up for it, bring them a small gift or a home baked cookie. They work hard.
- The Lego Moment. The chemo room looks sort of like a beauty shop, with big chairs lined up around the edge of the room. You sit down, relax, and wait for your nurse to hook you up. I had a port implanted during my first surgery back in October, and it was there, waiting, just under the skin below the left side of my collarbone. The nurse has a little plastic piece that fits right onto the port, like two Legos snapping together, and it all starts with just a quick pinch. Doable. Then tape goes over the port to hold everything in place. Relax…you’re not going to accidentally jerk out the line.
- The Filling Station. After you get hooked up, the first thing flowing into your veins is saltwater. I couldn’t feel it at all. Next are the drugs. Mine were Taxotere and Cytoxan, given one after the other. Couldn’t feel them at all either, but I could look up at the monitor to see how much time was left, or at the IV lines to see the drip. I thought I’d be able to feel it going in, but no.
- Movie time. Once the infusion begins, it’s time to distract yourself. I brought ice water, crunchy snacks, and my iPod. I also brought a laptop and a lighthearted movie to watch with earbuds. I brought movies that made me happy: Mamma Mia, What About Bob, and Dan in Real Life. The chemo room offered TVs, but wouldn’t it be great if they had DVD players and a library of films for patients? My friend, Lorena, is working on this as a project.
- Walking on Air. After a couple of hours, I was done. The nurse flushed the port with some weird solution that tickled my nose (how something going into a vein in my shoulder would blast my nose, I have no idea), split apart the Legos, and said goodbye. Each time as I got up and walked out, I felt as if I were walking on air. I didn’t feel ill, but just like my body and head had been inflated like those red rubber bouncy balls we used to play Foursquare with in grade school. I had to walk a little slower, but otherwise felt okay.
AFTER
- Excuse Me. The first after effect I always noticed was some heartburn. Pepcid works great, as well as the anti-nausea meds that were prescribed for me. It wasn’t enough to keep me up at night, but enough to notice that something was going on in my stomach.
- Days of Grace. I had a day or two after each infusion where I felt okay. Not really myself, but okay. I was still on steroids at this point, and I think they give you a false sense of wellbeing.
- D-day. A day or two later, it hits. Major fatigue–you feel like you’re dragging around big ol’ elephant legs that just don’t function quite right. If you try to carry anything, it feels heavy. Walking up the stairs is slow and you have to think about lifting each leg as you go. Your brain feels fuzzy and it’s hard to read or concentrate. Your body sometimes feels hot or cold. You’re supposed to drink lots of water so you spend a lot of time in the bathroom. Your digestive system doesn’t work quite right–either things slow down or speed up.
- Lizard Mouth. One things I didn’t anticipate was the loss of taste. Chemo burns out your tastebuds, and bread tastes like the stuffing from inside your couch cushions. Ice cream tastes like cold lotion. And water tastes creamy. After a few days, the skin inside your mouth goes from smooth to grainy, like lizard skin. You have to brush your teeth a lot and gargle with baking soda-infused water, to reduce sores (I had a few, but they were doable.) All of this makes eating a whole lot less fun. I gravitated toward spicy things that I could taste. I developed a new fondness for spicy brown mustard, because I could taste it. I could also taste fresh fruits, veggies, and meat. Not much else.
- Aches. At times your head aches, your body aches. Oy! The aches, they move around. This is the time you really want to moan and complain, but I tried to remember how grateful I was for chemo and for the medical advances that have made it possible to beat back breast cancer. Most of the time I was successful, but a little moan may have escaped out now and then. Naps are a must.
- Crybaby. All of the above happened the first week after. The second week, I began to feel better physically, but my emotions took a beating. I don’t usually cry a whole lot, but small things would set me off. Loud noises, activity, and any kind of family conflict made me feel like I was being beaten with a sledgehammer about the head and shoulders. I finally researched this, and discovered that the chemo affects your nervous system and makes you more sensitive and vulnerable. It got so that my daughter, every time my voice sounded a little weak, would peer into my face and ask, sympathetically, “Are you going to cry?” Embrace it. Cowgirls cry.
- The Eyes Have It. After my second treatment, my eyes began to burn and water. I looked like I was crying all the time. Eventually it got so bad that I couldn’t read or watch TV. Simple solution: steroid eyedrops. Fixed.
- Chemobrain. People used to joke about this, but researchers have found that chemobrain is indeed a real phenomenon. Chemo affects your short term memory, and gives you a feeling of haziness or fogginess. Thankfully, it does not affect your intelligence or your ability to work. It’s frustrating, but usually temporary. And it’s a great excuse to buy a really cool organizer to keep yourself together. Ya gotta love the Franklin Covey clearance rack!
- Going Commando. I started losing my hair about 2 weeks after my first chemo treatment. This, by far, was the hardest and most emotional side effect from the chemo. However, it also has become sort of fun to wear funky hats, and try out new hairstyles and colors. Right now I’m liking my Meg Ryan blond wig, lent by a friend. Who knew I could carry off platinum hair? I wrote a blog post about going out bald, or commando, but so far haven’t had the guts to do it. But I will. Pictures to come.
ICK
- Hot Flashes. Chemo can send you into menopause. I now know what a hot flash is. And it’s strange; your body feels like it’s glowing hot from the inside, but if you touch your skin, it feels cool. You get sweaty (especially with a wig) and it wakes you up at night. There’s no way around it, this side effect stinks.
- Neupogen Injections. Two days after each chemo treatment, I had to start a course of five daily Neupogen injections to stimulate my body to produce more white blood cells to stave off infections. These injections are given at home (I talked my wonderful husband into doing this for me–he became a pro). You keep the pre-filled syringes in the refrigerator and take them out about an hour before bedtime. The injection goes into the extra skin around your belly. You pinch it, swab it with a little alcohol, then inject. It takes about 3 seconds and you just feel a slight sting. Here’s the trick: if you pinch the skin hard and hold it, then you barely feel the needle.
- Ouch. Bad news, though. The Neupogen causes bone pain. Because it’s stimulating your bone marrow to produce more white blood cells, your bone marrow swells and you get achy bones. It hurts! My doctor let me take Advil and the occasion Vicodin. Along with Ativan, these meds helped me make it through this phase of chemo.
- The Cumulative Effect. Each of these things I experienced became stronger and more long lasting with each chemo treatment. For example, after my first treatment, I was able to go skiing and snowshoeing up in the High Sierras (during the third week of the cycle, when I was feeling pretty good). By my fourth treatment, I was happy to take a slow walk around the block. My body was definitely weaker and slower to recover.
THE GOOD NEWS
- By the third week of each three week cycle, I was feeling pretty good
- Overall, no vomiting and very little nausea
- I could eat whatever I wanted (although I couldn’t always taste it)
- My weight stayed the same
- People say I don’t look ill. To me, I look a little more pale, my skin is dryer, and I’m wearing a wig, so I don’t think I’d win any beauty contests. But when I slap on my makeup, put on my blond Meg Ryan wig and smile, I think I look okay.
There’s no way around it; cancer is a major challenge and chemo is horrible. But although it’s horrible, it’s an amazing tool in the cancer fighting toolbox, it’s temporary, and it’s doable. But the fear? That’s another thing altogether. My fear of chemo reminds me of the time when my dad was driving our ol
d olive green Ford station wagon down a highway in Arizona. A hot breeze kicked up, and big thorny tumbleweeds started rolling down the highway. All of a sudden, the wind direction changed and a giant tumbleweed as tall as our car rolled directly toward us. I was about 7 years old, in the passenger seat, and it looked like we were about to be crushed by the tumbleweed. It was like the scene out of Raiders of the Lost Ark where Indy faces down the rolling boulder. I screamed on impact and the strangest thing happened: it disappeared, crushed into a million tiny pieces of dried brown grass that scattered across the road under our car. We felt nothing.
My fear of chemo was like that. I felt overwhelmed and like I was going to be crushed by something much bigger than me. But I wasn’t, and I’m done. And if you or someone you love is facing chemo, you’ll be done soon too. Just fasten your seatbelt and let that station wagon roll on.
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Susy Flory is the author of So Long Status Quo: What I Learned From Women Who Changed the World (Beacon Hill). She wrote a book about being a strong woman; now, with a recent diagnosis of breast cancer, she has to live it.
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SUSY FLORY is a New York Times best selling author, speaker, and journalist who searches out big stories with happy endings. She's I'm always looking for true stories that inspire and challenge her readers to embrace a life of passion, boldness, & adventure. 
Thank you for sharing this Susy – Love you!
I think many of us have a secret dread that this is in our future…reading your blog has so helped. You’re guiding us over this bump on your road of life, and sitting in the back seat has been a great education on how to approach our own personal bumps on this road, and how to help/react/love others traveling along. Thanks so much for your honesty and humor!
Thanks for sharing from your heart. I now have a better sense of what happens with chemo. You have looked great and I admire your upbeat spirit.
Dear Susy – sharing your experience will be a blessing of encouragement and hope to so many! You are a breath of fresh air!
Good post, thanks
You’re amazing, Susy. A real inspiration.
Much love
Liz x
Thank you so much for sharing your experience! I found this when I think I needed it most. I laughed at your reference to “Lizzard Mouth” , its so true! God I laughed so hard at that reference. It really feels like that! And the Body temp changes, so true for me. I shaved my head after losing so much hair, and since then its been an ongoing battle to keep it cool. I had no idea that my head would be so hot. Chemobrain, so so true, I would get up fm the couch and be in the kitchen and forget why I went there. I would be cooking and forget why I had to go to the refrigerator. Thank you so much for sharing and making me feel normal as normal can be considering our circumstances.
Lori, I always say it’s better to laugh than cry. Hang in there, Girl! You’ll make it through.
I cried when I read your post, mostly because I have felt it all. Thank you for validating my feelings and thoughts.