#103 Chemo. Chemo. Chemotherapy

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Aug 18

CONQUERING CANCER - POST TREATMENT

#103 Chemo. Chemo. Chemotherapy

For me, when I sat in the chair to start my first chemotherapy infusion was when my cancer felt very real. Something about knowing that poison would be pumped through my system for several hours was really unsettling, as I imagine it would be for anyone.

There’s really no way around it. Chemo sucks, but there are a few ways to make it suck a little bit less. I’ve jotted down some tips below that will hopefully help you manage your chemo. Some of these I learned from my medical team; others I learned on my own, and some from friends who shared with me what worked for them.

— Cold Therapy — to chill or not to chill? There’s a lot of talk about cold therapy, also called cryotherapy, especially for your head so your hair doesn’t fall out, or for your feet and hands so you don’t get neuropathy, which can be debilitating at times and hurts most of the time. The first thing to know is that you have to choose. You can do cold therapy on your head or your extremities, but not both. Many women immediately choose the therapy for their head to save their hair. From people I’ve talked to, it hurts (so does the other, by the way) and gives you a doozy of a headache. Additionally, I’ve been told that when all was said and done the patient didn’t lose all of her hair, but it was so thin she ended up having to shave her head anyway. I don’t have any personal experience with cryotherapy for your head so I can only repeat what I’ve been told. I chose to try to save my feet and hands instead. It was somewhat of an economic decision for me — I have a lot of money invested in shoes and the idea of not wearing them was dead on arrival. Also, I type a lot at work — I needed my fingers to work.

In the photo on the timeline for this post, the contraption on my hands and feet are homemade (duh). At the time, there were a few things on the market for keeping things cold, but if you read the fine print, it usually said (not for chemotherapy). My husband is quite resourceful so he bought two chilled containers for holding wine, filled them with ice and put silk gloves on my hands and then put my hands in each of the containers. For my feet, he bought these therapy socks with refreezable chill packs that last about 20 minutes each, which meant I’d need at least three sets because once they thaw they aren’t doing the trick anymore. Our nurse let us keep them in their heavy-duty freezer and that helped too. After my first session, we realized the wine bottle holders were too limiting, so we decided to buy more of the things for your feet and put those on my hands too. It was much more comfortable. You’ll need someone with you because every time the ice packs melt you will need someone to change them out for you. The idea is that with your fingers and toes frozen, the chemo drugs don’t reach your extremities as much and therefore don’t do as much damage. I’ve heard people get really creative in constructing things to use for cryotherapy. It’s all over the internet.

When you undergo chemo, the nurses will give you a number of drugs through your port before they give you the chemo drugs. So of the four or five hours that you are there, only about two hours of it will you need the cold therapy.

The nurses can also help you determine the timing. Typically, you start the process 30 minutes before they give you the chemo drugs and you continue it until 30 minutes after. For me, that was about two hours or so.

Cold therapy is uncomfortable and sort of hurts in the way that having frozen toes and fingers hurt. But for me, it was worth it. I know people who suffer from neuropathy and it’s awful. I should add that cryotherapy is not a guarantee. I know people who used cryotherapy every time and still ended up with some degree of neuropathy. I was one of the lucky ones that didn’t.

— Ambiance. Consider the environment in which you will be receiving chemo and whether it suits you. The first place I visited was old, dingy and a bit depressing. The day I visited, it seemed like most all the patients already had one foot in the ground. I needed someplace cheerful and I found it at another center. I had to change oncologists to do so, but for me, it was worth it! The new one was bright and cheerful. And that helped my mental state a lot.

— Bring snacks. I always brought snacks (mostly junk food because I thought I deserved it). I ended each session with a cold old-fashioned popsicle. Somehow keeping my mouth cold toward the end made me feel better.

— One after-effect of chemo is bone pain. I think this comes from the drug they give you the next day. Whether it’s Neulasta or something else, I found that taking a Claritin (the dissolvable ones) about two days before chemo and all the days after that you are receiving the second medication. I don’t know why it works, but it does.

— Keep Working? This is very much a personal decision. Some people must work during treatment, others want to work to keep busy. I was fortunate in that I could choose to not work during my treatment. Well, to be honest, my doctor told me not to. She felt my stress level at work was pretty high and that the stress would interfere with my ability to heal. I think she was right, but each person is different. I did work some from home, but I didn’t go into the office — I just didn’t have the physical energy, and when I had the physical energy I didn’t have the mental energy. Overall, I would say just listen to your body and remember that you don’t have anything to prove to anyone. Your number one job is to get well — period. And so you do whatever is going to help you do that. For some, it’s working and for others, it’s not working. Just don’t give yourself a hard time for any of the decisions you make.

— Hair: Many people told me to cut my hair very short or buzz it with friends/family to make it a party. That way, you are losing your hair on your terms. This didn’t work for me. I held onto my hair as long as I could and didn’t cut it off until it starting coming out in chunks. My husband buzzed it and it was traumatic for me. Being bald was odd at first, but I think what really bothered me was that up to that point I could pretend that I didn’t have cancer. But once you’re bald, it’s like there’s a flashing neon sign over your head that screams, “I have cancer!” It just makes it so real. Even now, with this stage behind me, when I see women who are bald, I want to ask them if they have cancer and engage in conversation with them. But then I think about how I would have felt. Would that be akin to asking an overweight woman if she was pregnant? Other people have told me that cutting their hair on their terms was empowering. That just didn’t work for me.

— Call your health insurance company to completely understand your benefits. Keeping up with the paperwork is exhausting. One thing I did learn was to not pay a medical bill the first time I received it. Often the hospitals or centers send bills to everyone to see who pays first. I learned early to wait until I received the second bill, and sometimes the third, before paying it. I had a few instances when I paid the bill right away only to learn the insurance company covered it and then I had to wait months to get reimbursed. Also, know that often the insurance company’s default answer for coverage of anything out of the norm is no. So, don’t hesitate to push back on them if they turn down something you think you need. I believe they count on people not pushing back.

— Limit Internet searches as much as you can (after you find this site, of course). One site that I found helpful is breastcancer.org. But still, try to keep it all in perspective. A medical degree via Google is not helpful in this case! Binge watch something on TV instead. For men, I suggest the site Men Against Breast Cancer.

— Regarding port placement. My surgeon put my port farther towards my bra strap because he said it will keep my options open for surgery. Ask about this, especially if a radiologist is placing it. He/she might not think about that. My port area wasn’t necessarily sore any of the time. But I did make sure they knocked me out when they put it in. I was in twilight when they removed it but I didn’t feel a thing.

–Dry mouth and mouth sores. I used a rinse for dry mouth that worked out fine. If you start to get mouth stores, call the doctor immediately and ask for a prescription for magic mouthwash. Don’t wait. Do this immediately at the first sign of your mouth feeling odd. Also, I switched to Biotene toothpaste which helped with dry mouth.

–Teeth. If you have time, have your teeth cleaned PRIOR to chemo; I’m not sure you can have it done while undergoing treatment…check with your doctor.

— Rest. If you can, go to bed at almost the same time every night. Even when you aren’t tired or can’t sleep. You can try some over-the-counter sleep aids that might help. But, they don’t always work. I have a prescription for Clonazepam which helps me sleep most of the time. I don’t know if I could sleep without it at night.

— Be vigilant about not exposing yourself to germs. Although I never wore a mask when I went out, I made sure I only went out when my blood count was good. Also, I kept antibacterial fluid throughout the house so everyone’s hands were clean all the time. I even had my family load the dishwasher with the silverware facing down so they wouldn’t unintentionally touch the tongs of the forks, etc.

— Eyelashes. Once my eyelashes fell out, I bought false eyelashes online at Velour Lash and Flutter Lash with Flutter Lash being my favorite. My most favorite though is Quon’s Eyes. These are great lashes, but they are a bit “extra,” meaning they can be a bit more glam and dramatic than many people like. In that case, I would buy a brand like Ardell or something that is much cheaper and trust me, you want to learn how to put them on with the cheap ones, not a pair that’s going to run you $20-$30. As far as eyelash glue, the best is from a website called headcovers.com. You’ll want the Cardani glue that comes in the black bottle with a silver top, not their waterproof glue (it doesn’t work).

— It’s important to tell your oncologist if you have concerning side effects, so they can keep you on track with chemo. A few times I just let things go thinking it was a one-off. With cancer, you don’t want to take that chance.

–Chemo Sessions. I carried a tote bag with me that holds everything I thought I’d need, including a blanket, small neck pillow, reading material, tablet, equipment for the cryotherapy, pen/paper — just anything to keep me busy. Most of the rooms have TVs in them so I mostly watched TV or nodded off a bit. Also, wear a button-down shirt. It makes it easier for nurses to access your port.

— Water. Right after your treatment, try to drink a lot of water to flush out the toxins in your system as quickly as possible.

— Food. Do not eat large meals or generally unhealthy foods. However, when you don’t feel well, eat anything you can keep down to help keep your strength up. Especially avoid raw meat or seafood (sushi) and definitely stay away from salad bars. Wash all vegetables and fruits before eating, even if they come in a bag and say they were pre-washed.

Eat even when you are not hungry if you can. It’s important to keep something in your stomach and it helps with nausea. The doctors will give you a prescription like Zofran or something else. I found that staying ahead of the nausea was a lot easier than getting rid of it once I had it. Also, with all this eating, if possible don’t eat your favorite food when you’re nauseous if you can avoid it. I love crab legs. I used to eat them once a week. I ate them shortly after a chemo session and now I can’t go near them. Just the thought of them makes me feel sick.

–Grooming. Lots of people say no manicures or pedicures during chemo. I did both the entire time and didn’t have any problems.

–Hot Flashes. Hot flashes are the worst. I don’t know if they kick in because of surgery or chemo, but either way, they are a disaster to deal with. I don’t think I’ve ever been that uncomfortable for so long. There are several antidepressants on the market that help with hot flashes. Some work, some don’t. It depends on the individual. I found that Effexor worked best for me. It took a little while, but I take two at night and I’ve gone from 10 hot flashes a day to barely one or two during a week.

–Chemo brain. Chemo brain is real. A lot of people don’t think so, but I’m telling you, it’s real. Sometimes you’ll find that you are mentally foggy, other times you can’t remember simple words that used to run off your tongue easily. I am a year out from chemo and I still grapple for words at times.

— Visitors. I had a lot of friends who wanted to come by to visit or to go to chemo with me. At first, I was open to it, but I quickly found that it was exhausting and took too much energy out of me to keep people entertained. If you don’t have the entertainment gene that means anyone who walks in you have to engage for as long as they are there then it won’t be a problem for you. People who come see you want to know that you’re okay and it takes a lot of energy to convince them that you are. After a while, it was just too exhausting and I had to get selfish. I needed that energy for getting better.

I hope this was helpful to you!