I remember heading to my first chemotherapy treatment with a big cooler, a bag full of stuff, and a blanket. In the bag I had everything imaginable to ease my pain, my nausea, and all other possible side effects. After many long hours spent doing research online, I felt so prepared and ready. But now that I’ve had eighteen rounds of chemo come and go, I realize that as much as I thought I had it all figured out, there were many things that I just didn’t see coming. Below are the top 5 things I wasn’t expecting, and how to best prepare for them.
1. MANAGING ALL OF YOUR APPOINTMENTS ALONE IS A FULL TIME JOB SO CONSIDER A DEDICATED CALENDAR OR SOME TYPE OF CANCER PLANNER TOOL.
Having cancer means you are about to become a full-time secretary for yourself! Dealing with cancer treatment is already difficult mentally and physically, but when you throw in juggling the various medical appointments and tests on top of that, it becomes almost unmanageable. Of course, I was ready for my weekly or bi-weekly chemotherapy, but the number of pre-appointments, procedures, tests, various specialist visits, and beyond was overwhelming. In my case, on top of the standard weekly blood tests, I needed to get an occasional EKG and echo done to monitor my heart function. All of these must be squeezed into your schedule, as well as oftentimes into the schedule of a person who is going to take you there. That’s right - for many of these, you can't go alone. The logistics of all this almost became a full-time job. At some point, I gave up on my phone calendar and bought an old-fashioned paper calendar. There are even specific cancer planning notebooks, communication and management tools that can help you and your caregivers, such as Tx Tracker, CanPlan, Ready for Recovery and Bright Pink. After months of treatment, I feel so proud of myself that I should add these extra time-management skills I’ve learned to my resume!
2. SWITCH TO ODORLESS AND SULFATE-FREE SKIN CARE PRODUCTS.
I’ve always had very sensitive skin and would frequently have allergic reactions to strong-scented cosmetics. I knew my skin would get dry during treatment, so I had lotions and sensitive skin creams ready for while I was in treatment. However, the side effects my treatment would have on my body totally blew my mind, and not in a good way. My skin reacted awfully to the steroids that were being pumped into me at high doses. I got what’s called “chemo acne” all over my face, which is particularly hard to hide when you have no hair at all! Additionally, my entire body was covered in little invisible bumps, sort of like goose bumps. Furthermore, I had red rashes on my left arm and behind my knees, which, to my surprise, was actually treated with a steroid-based ointment! But, beyond all this, the absolute worst is that my treatment has made me allergic to all soaps, lotions, and laundry detergents. My skin has become super dry and has reacted to all scented chemicals. The best solution I finally found is a soap, normally used by newborns with eczema, that is odorless and sulfate-less. One of the products that I found particularly useful is the Cetaphil Baby Eczema line of products, which includes calming wash, lotion and moisturizer. Unfortunately, as I’m still in active treatment, my skin sensitivity has not yet gotten any better and I am slowly getting used to the idea that this may be permanent. Instead of beating myself over it, I like to think about all the money I’m saving on fancy cosmetics!
3. TREATMENTS CAN GET VERY LENGTHY – AND COLD – SO LAYER UP!
I am sure some of this will not come as a shock to you - we all have been to the doctor’s office before – but most treatment facilities are cold. While I expected this in the winter, I didn’t realize that most facilities are intentionally kept cold to ward off bacteria, so even in the midst of summer, you may want to put a sweater on. Initially, the cool air can be very refreshing, however after sitting still in a chemo chair for 6-8 hours a day, most people are chilly. In addition, some patients use Cold Caps as means of preventing hair loss and ice buckets for nails and toenails as means of preventing chemotherapy-induced neuropathy. That is why I found it very helpful to always bring wool socks, a blanket and a hat with me for my treatment. I have also used the Care+Wear Hoodie that is designed in collaboration with Oscar de la Renta to provide super easy access to the port side through a side zipper, while still staying warm.
4. CONSIDER A COUNSELOR OR THERAPIST EARLY ON TO HELP ADDRESS EMOTIONAL, PHYSICAL AND INTIMACY QUESTIONS.
I feel that the topic of intimacy concerns gets very little attention. When I first began treatment, I remember receiving a brochure talking about sexual safety while going through chemotherapy. While helpful, this only addressed a small part of the problem – there’s much more to it than just the act of sexual intercourse. While you’re going through treatment and all of the sudden your body feels like it’s not yours, the psychological part of intimacy kicks in. I often questioned my own attractiveness after I lost my hair, my eyelashes, my eyebrows, both of my breasts, and perhaps my fertility. Dealing with all the other side effects of the treatment is tricky enough, but feeling unattractive kills your self-confidence. Beyond that, many women suffer from a lack of libido, vaginal dryness, and pain during intercourse due to the drugs received during treatment or even from chemotherapy treatment itself. Some women are in treatment for 5 years, 10 years, or even the rest of their lives. Men, similarly, may experience a lack of libido or even temporary impotence during treatment. This is why this topic is so important - cancer treatment can leave you with a whole new body, and you, and your partner, or potential future partner, need to take the time to understand your body and its needs. Thankfully, there are many great counselors and therapists that are willing to address these concerns in either solo or couple therapy sessions. I personally found it very helpful reaching out to other young women and men who may be struggling with the same issues through various groups such as Young Survival Coalition, CancerCare and The Breasties.
5. YOUR FOOD TASTES – EVEN YOUR FAVOTITES – MIGHT CHANGE.
A large portion of preparing for treatment is focused on providing nutrition and healthy balance to your day to day diet, but I was really surprised that no one explained how your ability to taste food during treatment can change. Immediately after my chemo, I noticed that most of food tasted different – everything had a metallic taste - even water! In addition, chemotherapy gave me the weirdest cravings, which I tried to satisfy within reason. Some bloggers advise against eating your favorite foods during chemo due to a) metallic or odd tastes and b) the nausea and vomiting in extreme cases. Similarly to food poisoning, your mind can associate negative feelings with certain foods and you may never be able to eat them again in the future - I’ve heard of people never being able to eat chicken broth again after their treatment! While undergoing treatment, I loved drinking Trader Joe’s Organic Ginger Turmeric Herbal Tea to help my nausea. In terms of food, my recommendation is to eat your favorite dish after treatment – it’ll make it that much better!
Aleksandra Tutka is a 31 years old attorney living in Hoboken, New Jersey. She was diagnosed with hormone negative, HER2 positive breast cancer at the age of 30, with no prior cancer history in the family. She is passionate about traveling and has visited over 25 countries. You can follow her story at @aleksandraaade on Instagram.