8 Things I Wish I Knew Before I Started Chemo
Today as I'm writing this, I'm one year post chemo and fluids. I'll just start with a list of things to stock up on before chemo, because to be forewarned is forearmed:
- Dissolving Nausea Medicine
- Gummy Vitamins
- Starburst Peppermint candies
- Peppermint Essential Oil
- Eucalyptus shampoo
- Loofah washcloth
- Unscented baby wipes
- Milk of Magnesia
- Hand & Foot cream
- Mineral oil
- Someone, or several someones, to help you
- Humor! Irreverent, dark, dopey, humor! It's our obligation to laugh in the face of death at every opportunity-- give it the old finger, so to speak.
Chemo is poison.
Ok, so you probably already know this but you may not be thinking about the implications of it. If you don't get all pukey sick from it, don't let your guard down regarding nutrition & hydration. Stay on top of that. But I'm really glad for you if you don't get sick. There are all different kinds of chemo mixes, & for every chemo cocktail, there are all different reactions to it. Every reaction has ranges...from barely noticing, to bedridden, to feeling on the brink of death from the cure. I fell into the last category. Yeah, I've always been lucky that way!
There are a number of things that my husband, John, and I weren't told, or didn't hear. We just barely made it out of week one. We couldn't possibly grasp the whole-body effect of chemo. I'm begging you, don't go through chemo alone. It doesn't matter if you have to have your snotty cousin move in or check on you every few hours. Just do it.
Make sure you & your caregivers know what dehydration looks like.
If the chemo isn't going too smoothly, your caregiver(s)/helper(s) need to know what dehydration looks like. I was so sick 24/7, that by day 6, John had to take me to the E.R. I was dangerously dehydrated and had begun a downward spiral, floating in some sort of despondent twilight world. If he hadn't followed his instincts, I would have just drifted away. I needed bags of IV fluids w/potassium, magnesium, steroids, & anti-nausea juice. 10 days of fluids followed that and, thereafter, 10 days of fluids after each chemo round.
While in the ER, the doc told us that my anti-nausea meds, which I was unable to keep down, came in a dissolving pill. I was easily able to tolerate them in that form, so I switched over. I don't know if it would have made a difference that 1st week, but I wish I could've at least tried.
Constipation may follow the diarrhea.
We were aware that chemo could cause diarrhea, but didn't know that terrible constipation would follow. Twice I almost had to go in for help because it got so bad. Cherry/Mint Milk of Magnesia is what helped me. I was unable to eat or drink fiber rich stuff, as I was nauseous and throwing up all the time.
I think chemo kills everything, bad & good, without regard, and it's just too much for our systems to expel properly. Anyone can run into constipation, but it just makes a bad situation a whole lot worse! There's also something called Fleet mineral oil enema. I kept one on hand.
Prepare to be flexible with food and nutrition.
Even our best laid plans can go awry, so be flexible. I like Ensure nutrition drinks. Our cancer center provided a free case each month. A great way to get those pesky nutrients! Do you think I could even talk about Ensure after I started chemo? NO! I Could Not! The smell, the thought, the mere suggestion of drinking an Ensure, had me running for the sink! Finally, John started drinking them (I was too sick to make suppers, so he lived on Ensure & pizza for 4 months).
After dozens of tries with all sorts of foods, we discovered Stouffer's Mac & Cheese was the only thing I could keep down. The important thing is to keep trying. I'm a burly gal and the 50lbs I lost didn't even get me to my target weight. But it was freaky to lose it so fast. If you're average weight, losing 50lbs will kick your ass, so keep the calories up. If you're average weight & start to gain, try not to skimp on food. Gaining or losing weight, either way, one must keep up getting vitamins & goodness into your body. Don't give up!
Combat neuropathy with lotion.
I wish I'd have known to put lotion on my hands & feet, everyday. By the time I figured it out, my hands & feet were cracked & bleeding. My skin & calluses were sloughing off. It took some industrial strength Eucerin Healing Repair cream to even get close to caught up.
Watch your grip on hand railings if you get neuropathy. That numbness in the hands and feet can be tricky to navigate.
You may go through some serious emotional episodes.
I wish, wish, wish, I'd had known about the feelings! I don't know if it was the extreme physical weakness, or the chemo for me, but don't be surprised if you experience overwhelming sorrow. John and I worked out a system after a few meltdowns. Our sage wisdom is, just go with it. It's not going to get reeled back in, so let it out. I was lucky to have John to help me through it.
The family/friends I spoke with in person or on the phone, were ok with these episodes. If they cried too, it was alright. Let your supporters know it's a real possibility, so they won't get all funny about it, or run for the border. It can be embarrassing in public, but well, so what? You have to take care of yourself anywhere & anytime.
Chemobrain is real.
I'd read about chemobrain, but figured I wouldn't experience it. I just couldn't fathom not being able to multi-task, or articulate. Chemobrain is like a mix of ADHD & early Alzheimer's. It's frustrating as hell! Just be prepared...stacks of sticky notes helps.
When you're doing great, don't be hard on yourself when it all goes blank for awhile. Have someone else do the critical stuff (like feeding your pets or kids!), & have them check your work. It lasts for however long it lasts. You just have to get to know the new you. You're not less than, just different. And don't get all worked up if you find your shoes in the fridge! Just make sure the frozen veggies didn't end up in the sock drawer!
Adjusting to hair loss isn’t simple.
Oh, the hair thing. Cover your head from the sun (you may sunburn really easy), or in a cooler climate, you may need to wear a stocking cap, even to bed, to fight off chills. When your hair starts growing back you might get little pimple-like bumps that itch & hurt. I used Nioxin shampoo & gently washed/exfoliated my head with a loofah. The eucalyptus in the shampoo healed the bumps, and I never got them again.
I wasn't prepared for the emotional hit of losing my hair. Intellectually I knew it was temporary. Emotionally, it felt like I'd done something terribly wrong & was being punished. I felt such deep shame. I felt so sad & unfeminine. Through the hair loss and regrowth, we tried anything to make it less crappy. From football fan hairy wigs, to taking a sticky lint roller to get the little hairs off my head before we razored it off.
Any kind of humor helps.
We made jokes every single day, too. Playing the "chemo card" we called it. Get out of a speeding ticket; forgot to pay a bill on time; telephone solicitors; anything we could think of where the cancer & chemo might get us out of something.
It was hilarious! Finding out there was hope & that I'd probably live? I suppose we should return the shovels for a refund. Missing a lung? Whew, at least I won't have to worry about double pneumonia. Crying? John said he cried so much he went down 3 dress sizes from crying like a girl. Weight loss? Wonder if they'll let me go for a few more chemos so I can get down to my ideal weight. Whatever we could come up with, & wherever it came to us. The doctors weren't immune from our dark humor.
These are just a few ideas & “wish I'd knowns”. I hope they help you.
Anything not on this list that you wish you had known before starting chemo? Share in the comments below!
Bette is a lung cancer survivor as of 2014. Although she realizes her life will never be the same, she's ok with it, and embraces having had cancer.