"Cancer didn't bring me to my knees, it brought me to my feet."
- Michael Douglas
Chemo 411
Also, in full disclosure mode, it’s not always PG. Sometimes it’s R, because
sometimes an R is the only way I can live the life I’ve been dealt. I tried to keep it from XR (or whatever above R is) because my teenage niece and nephew will read it. So, apologies in advance for the occasional cuss word.
Onward and upward.
Chemo Life Basics
Chemo is not what it used to be. You should not be puking your guts out for days on end. This even starts to happen, call your doctor. It can be helped. You should feel off and a little out of it, but not completely under the front tire of a bus for the foreseeable future.
Journal – write down all your side effects for the day and mark it Day 1 (chemo day), Day 2, Day 15, etc. Do this for every chemo, every day. You will notice a pattern very quickly. If your tongue is raw on Day 4, but is healed by Day 10, you will have hope that the burnt tongue is not forever. It is also amazing to see how crappy you felt on Day 3 when you are on Day 18 and feeling sorta normal. (Days 3-5 are usually the worst for people, but that might not follow the rules. For me Days 4-9 were the worst. You’ll know if you write it down.)
Accumulation – Chemos stack one on top of the other. They are accumulative. So if you have some bone pain on Day 8, Round One, you might have more on Day 8-15 on Round Four. They do get harder the more chemo you get. It just happens. And after your very last chemo, you are not awesomely done with side effects the day after infusion. Nope, you still have a good long (long) month before things start to get back to normal. Then you go through a “good, I’m better”, and then a “crap, no I’m not” a week later. This will happen several times over the course of a year.
Move – Get up and move, even/especially when you don’t feel like it. Yes, lay on the couch in front of Downtown Abby for three hours, but also get up and walk into the laundry room, or outside to the backyard. Take the kid for a walk. Anywhere. Just getting up and moving is helpful. Always do it without a destination and without a mandatory time frame. That way if you only make it for a little bit, you won’t feel like a failure. That fatigue wave hits hard and fast. My dogs loved my post-chemo walks because we were completely aimless and frequent.
Staying hydrated – You can get a hydration infusion a day or so after chemo. In hindsight, I might have done that even though it was more time in infusion. Because you need to drink All. The. Time. I’m not kidding. It’s a pain, but, if you don’t, you really notice it. Anything that tastes good. Oddly enough, wine and beer tasted gross to me. Dangit!
Fatigue – Bone weighted, nap in the lawn, cannot move your body forward. Your body just feels like it needs to stop. It’s not just sleepy. It’s like hitting a wall. It comes and goes, and goes at inopportune times. It does follow a pattern, so figure out when you are most awake to do thinking/planning stuff.
Chemo Stupids (or Chemo Fog) – If you’ve ever taken cold medicine, this is what it will be like. That, can’t sleep, can’t stay awake, can’t watch TV, can’t read a book, can’t follow a conversation, can’t remember absolutely anything, can’t concentrate, and tend to be very short with people. It is like the spinning circle on the computer, waiting for the website to load on dial up. Pair it with the word drop, and you walk around mad at your stupidity a lot. It’s not stupidity. It’s healing. I don’t know if it’s the drugs, or the fact that your body is exhausted from trying to rebuild itself. Someone should do a study. Rely on other people to be your brain for a few months. Rely on coworkers to do your planning; they just need to give you a script. You’ve got enough to do. Oh, and tell your family to stop sentences that start with “Remember, I told you.” It will only start a war with that phrase.
Word Drop – Words will fail you. You will be in the middle of a sentence and you will have no idea what you were talking about. Sometimes it comes back, often it doesn’t. Live and let go. You will forget your spouse’s name. You will forget the word “microwave” or “airplane” or “pencil” or anything else. It’s a game of saying words and making sounds to other people like a game of charades. It is frustrating. It will piss you off. It is just one more stupid thing. Later, it’s really funny.
Other people - Accept help. On your terms, is the second part of that. If you spend more time trying to calm/reassure/listen to someone else, let them go. I had to kick people Chemo Island because I couldn’t handle trying to entertain them and solve their problems while poison was flowing through my veins in the infusion center. Also, accept stuff. Your spouse and kids will thank you when dinner shows up and no one under your roof had to do it. So will your wallet. Cancer is expensive with all the little stuff to fix what chemo is breaking. When someone asks “What can I do? give them a list. Ask your family to help you. I will say this: If you deny someone the opportunity to help you, you are denying them the opportunity to bless you. Let that sink in. Then make a list so you don’t have to think on the fly.
One thing. Do one thing all day and call that success. Do not be hard on yourself when your to-do list goes by the wayside. I am a total list maker and I didn’t make to-do lists for a year and half. I didn’t want to feel like a failure when nothing got crossed off. If I showered that day, it was success.
Side Effects
You might get some of these, and you might get all of them. This is a rundown of what the chemo does to your body. This was me, yours could be different. Regardless, while annoying, they will (almost all) go away. You will not live life with no toenails. The hair on your arms grows back. A year later, it feels so much better. I am less than a year out of my last chemo and I feel better than before my tumor was found. The general rule is a year after last treatment, you will be at 90%. I found I’m at least that, if not more, and I have another three months to go.
Toes –lifts the nail. Sometimes discolors them and they turn back. Usually happens toward the end. Use Vitamin E and tea tree oil to possibly prevent it (or at least pretend it will help – it gives you something to do).
Feet – Could tingle or feel numb in the toes or heel. Tell the doc about this. L-Glutamine and B6 daily might help.
Legs – Could feel achy, like you’ve done a thousand squats. They might feel heavy and just want to stop on you. Hair also falls off, although never fast enough or quantity enough.
Lady Parts – your pubic hair will fall out, giving you a “free” Brazilian. It’s just gone one day, not like you’ve left a trail. It’s just lighter, then gone. You can’t pee straight no matter how hard you try – I wish someone would have told me this – it drove me nuts! You also dry out. Coconut oil works.
Stomach – some chemos cause diarrhea, some cause constipation. If you’re lucky, they balance themselves out. Regardless, there are always stomach issues. Your body has been chemically invaded. Your stomach is trying to get it out. Smooth moves tea for constipation; Imodium for diarrhea. You might get nauseous. Be free with the anti-nausea pills (I was fond of Zofran). Take them if you feel it or not – stay ahead of it! It doesn’t last the whole three weeks. If you are vomiting, tell your doctor. Mine didn’t want me ever throwing up – she would give me stuff so I wouldn’t.
Chest – sometimes has phantom pains in your breast. At random. Talk to your doctor about ANY pain in the chest, heart area. Heart palpitations were also common. It felt like bubbles. Talk to the doc.
Armpits – you might or might not need deodorant. Sometimes body odor just goes away. Again, so does the hair, although not as fast as you’d think is appropriate for all the crap you are going through.
Skin – Your biggest organ. Chemo plays havoc with it. Lotion up a lot during the day. Anything unscented or doesn’t make you want to throw up. Tell your doctor about any abnormalities. Hives or bumps are not uncommon.
Hands – dry out very easily. Use lotion. Wash all the time (wait, maybe that’s why they dried out).
Fingers - Again, neuropathy can happen. Any pain or numbness, or feels like superglue on your finger pads, let the doctor know. It is common for your finger pads to shrivel up like you’ve been in the pool too long. Some people actually temporary lose their fingerprints so feel free to go on a crime spree if this happens (yeah, don’t). They also tend to be cold a lot. You will lose the hair on your knuckles (I bet you are now looking at your knuckles – see, hair).
Fingernails – same Vitamin E and tea tree oil as toenails. They might lift and peel and generally look, well, like you are sick. L Glutamine and Vitamin B. You could ice your hands and feet, or hold a frozen bottle of water to fend this off. Ask the nurses.
Arms – general fatigue, like they are heavy. The hair on it will go away. Go to a lymphatic physical therapist. Get your arm measured. Lymphedema can happen when you have nodes removed. Get the measurements now and start lymphatic drainage massage at some point, particularly after radiation. Getting measurements now gives you numbers to compare it too. Any tingling or swelling, call your doctor.
Heart Rate – will jack up like crazy. Do not panic unless you see the nurse or doctor panic. I had some really scary numbers.
Ears – tell your doctor about any ringing in your ears. I don’t think any of your chemos cause hearing loss, but it’s forever. Also, you no longer have ear wax form during chemo. For someone with constantly itching, waxy ears, this was very weird.
Face- Skin is weird, dry, hot, flushing. Your regular lotion might not work. It might burn like hell when it’s on. Experiment. I usually use coconut oil and found I just couldn’t. It also changes day by day. One day Cetaphil would be fine, the next day it had to be CeraVue. You also could break out with zit like things. They do go away and they are cyclical. The show up and leave on the same days every chemo. Again, skin is your largest organ.
Nose – Will get sores in them and dry crusty crap that if you rub off, bleed like a stuck pig. Saline nose spray, or Nedi Pot feels good. Do this in the shower because you want that stuff going down the drain. Do not panic if there is blood. I was constantly getting nosebleeds. My last sore finally stopped bleeding six months after chemo. Your nose hairs will also fall out. This doesn’t seem important until it is cold outside, or you sneeze, and your nose starts running. There is nothing there to stop it. Tissues in pockets are handy. Or have several boxes in every corner of the room.
Mouth – Gargle with salt water and baking soda after eating anything. Mix it in a (marked) water bottle for convenience. Mouth sores are horrible! Head them off if you can. There is a Magic Mouthwash you can get, or Biotene from Fred Meyer. Your normal toothpaste might burn like hell. Try sampling ones to see what doesn’t feel like fire. Manuka honey also helped. It did burn once when I put it on a spoon and sucked it down. But the sores were gone the next day. Price paid.
Tongue – This deserves its own category. Your tongue will feel like you ate hot pizza for several days. Chemo burns everything, including your tongue, and it needs to regrow those cells. Again with the salt/baking soda.
Taste buds – remember pregnancy? When stuff didn’t taste right? Here it comes again. Do not eat your favorite foods. It will only lead to disappointment. Try new foods. You have no idea what they are supposed to taste like, so it’s not a disappointment. You will also have random cravings. I would crave spaghetti the whole day, Jeff would make it, and, five minutes before it was done, I’d really be wanting pizza. Every damn time. Eat when you feel like it, whatever you feel like. Water will taste weird. Try putting fruit in it, or mixing some Gatorade in it. Or Tang. I lived on Tang. Just drink every three minutes (slight exaggeration) but, do drink like it’s your second job. Smoothies were a god-send because I could get “nutrition” in them with very little effort. You might have a very sweet taste in your mouth, or metallic. For me, acupuncture cured this.
Teeth – chemo is hard on teeth. Try to see the dentist before chemo (they tend to get you in real quick when you tell them you are headed into chemotherapy). They tend to ache and it just adds to the fact that your mouth already hurts.
Eyes – Your eyesight may change. There were times I couldn’t read a stop sign – and I have better-than-perfect far away sight. They may hurt, they may be dry. Similsan helped without making it burn. The eyes get very dry (a common thing for your whole body). Drink water.
Eyebrows – They will either thin or disappear. I found this to happen when chemo ended (just when I thought it was over). You can pencil them on, glue some on, or just bag the whole thing. Some people get micro bladed before chemo. Do this before chemo starts – they won’t do it during chemo (and if you ask around, they will do it for free once they know it’s for cancer).
Eyelashes – I didn’t notice mine were gone until I tried to put on mascara. I don’t know where they went. They were just gone. And only on one eye for a while. Real cool look. You could try glue on ones, but your eyes bug you anyway, so I don’t know if I’d bother.
Hair – Get a short haircut. Then shorter. Your hair will not fall out until between 14-22 days after your first chemo. You will think you dodged it. Then it will fall out in a clump or a massive amount in your hands (usually in the shower). No matter how you thought you prepared yourself, you will still break down because shit just got real. You really do have cancer. Cry, scream, and pull your hair out. Mourn it. Be pissed. Be sad. Laugh at the fact that you have more bird nest fodder than your neighborhood needs. Oh, do this outside. The vacuum clogs up. So does the toilet. So does the shower drain. It’s fun on a windy day to watch it flail away with every brush stroke. Your scalp will hurt like you didn’t know it could hurt. This is when you buzz it. I hear buzz, not shave, but I’m not an expert on that. Some hairstylists will do it for free if they know you have cancer. It will be very emotional to see it shaved off and then to see you bald. Then, at some point, just like that, it’s acceptance, it’s finally over, and you move on. It will be very weird to see yourself in the mirror for a long time. You will obsess. Other people will not. I’m not even going to go to the part where “it grows back” because, duh. And I certainly will not say “It’s only hair” because that’s bullshit by people who still have theirs, and they didn’t lose it because of a stupid tumor that made them get chemo that made them lose their hair when it wasn’t their choice. /rant. Wear hats, wear scarves, go bald, wear a funky pink wig, your choice. You do you and to hell with anyone else.
Bone pain – After Nuelasta/Granix/Neupogen blood booster, immune booster, your bones feel like they are swelling out of your body. This is normal. Claritin (not Claritin D, not Zyrtec) taken every day, for whatever reason, helps this. You might not have to take it every day, but take it a couple days before chemo and then several days after chemo. By that time you are close to your next chemo, so why not just do it daily. It also might help with chemo bone pain. If this doesn’t help, talk to your doctor. For me, I had zero bone pain. Oh, and don’t skip the shot. We work with germy kids and you need to get your immunity back up (chemo will knock it to zero). Nuelasta is given the day after chemo (yes, another trip to the doctor) or it could be Nuelasta Go which is a box on your arm that give you a shot at some point 24 hours after chemo. Granix/Neupogen is given a couple days after chemo, but you go in between five and ten times to get the shot. You could also get these and do these at home should that rock your world. (Nuelasta is better, but insurance doesn’t want to pay for it unless you have a reaction to Granix – BTW one Nuelasta shot is $15,000. Granix is only $600 a shot, but you get more of them.)
It does get better. You get your taste buds back, your hair grows back (Lady Jungle shows up first), you get your energy back, your toenails grow in. It feels like it takes forever, (the toenails do take forever, at least 18 months) but, after, you wonder if you really did all that. It will eventually feel like you are talking about someone else. Pregnancy and morning sickness and something pushing on your bladder didn’t last forever, neither does this.