Six Things I Wish I Knew Before Starting Chemo.

Going through chemo taught me to pay attention to the small changes in my body and mind, and, most importantly, it forced me to find joy wherever I could. Knowing what to expect for the tough days—and knowing that it would pass—helped me immensely.

Here are six specific things I wish I knew before starting chemo that helped me not just survive, but find moments of joy and peace throughout the treatment.

1. Losing your hair is traumatic, but for me, a relief once I was past it.

When the surgeon who did my biopsy called to tell me I had breast cancer and that I’d need chemotherapy I was stunned. My gut told me it was cancer but the word chemo had not crossed my mind. Once I found out what kind of chemo I’d be having (TCHP) I researched cold capping to save my hair and ultimately decided it felt like a layer of stress that wasn’t for me. I had a lot of fear around needles and my port and wanted to be as calm as possible on treatment days. I shed many, many tears over the thought of losing my hair. I had really good hair. A friend called it ‘newscaster hair’ and I’d spent years growing it out and I knew it would be years before it was long again.

Around day 12 after my first chemo round it started to shed and I’d have 15-20 hairs in my hands after touching it. I knew it was time. My good friend buzzed her little boys hair often and offered to do it for me. I let my girls chop it first into a bob which they loved and kept it fun. We headed to our friends’ house and while the kids swam outside and came to peek and smile at me through the windows, we shaved my head. It felt like a relief to be through the emotional build up and we had fun with it. Friends make everything better and my village of people supported me so well through this time.

2. Steroid withdrawal can cause depression-like symptoms.

Like clockwork, on day 3 post chemo (my infusions were Tuesdays and day 3 was Friday for me) I would wake up achey and incredibly sad. I’m fortunate to be a person who has never struggled with depression but on those days I would sink into such a sad and weepy state. I told myself it was of course very normal to be sad in cancer treatment but after a few rounds of this I realized that the sadness would come on strong and lift a little on the same days. After some googling I realized that the intense steroids I was given during chemo had a withdrawal period and one side effect was a feeling of depression. This didn’t necessarily make it better but it was helpful to know what to expect, that it would pass, and that some of this was due to the meds. I asked my doctor about this and he suggested a longer and slower taper off of the steroids but I didn’t want to take any more medicine so I just made sure that on those days I had the support of friends and my husband and that my girls were cared for and out of the house. I typically spent those days in bed watching tv and just let the feelings come. If you find yourself really emotionally down a few days after chemo, the steroids could be one of the reasons.

3. Styes are very common.

One of my most annoying symptoms during chemo was styes along my eyes. I had a handful of them but one at the end was giant and very irritating. The only suggestion the nurses gave me was to use a warm compress but I found that using tea tree oil wipes helped to keep my eyes clean or to clear up any emerging styes more quickly.

4. Losing your tastebuds was one of the worst parts.

After chemo on Tuesdays I’d start to lose my taste around day 5-7 and it wouldn’t return until days 12-14 (but it did return between each round for me). This was one of the most depressing and frustrating side effects for me. Flavors were not quite right and some foods I loved would taste awful. When you don’t feel well and want some comfort, not being able to enjoy food was extremely rough. Some of the only things I could tolerate on those days were things like peanut butter on toast, lemon/lime electrolytes, and chocolate protein powder blended with frozen berries. Beyond tastebuds being gone, my stomach was very unsettled a lot of the time. I was lucky not to have any nausea but I will say that Imodium became my best friend and some days you need to be close to home because your stomach can be unpredictable.

5. The Neulasta shot sucks and you can ask for adjustments.

Many cancer patients get a shot the day after chemo that helps to keep your blood counts high. The shot was just a little pain in the back of the arm, but the side effects would hit a few days later. The nurses suggested taking Claritin, which was supposed to help with these side effects. I didn’t experience a feeling of “bone pain” like some people do, but I would feel incredibly achy all over, especially in my shoulders and around my waist. This feeling, coupled with the lack of taste and sadness after steroids made my third-round recovery feel almost unbearable. I did some research and found that if your blood cell counts were generally high, you could have a smaller dose of Neulasta. I asked my oncologist before my next round if we could decrease it, because my blood work always looked great, and he agreed we could cut it in half. That really helped with the achiness and it taught me to do my own research and advocate for myself.

6. Find joy wherever you can.

When going through chemo I lost my hair, my skin was dry, I was wearing pajamas and often couldn’t taste my food. I missed the days of putting on makeup and outfits, joining friends for a meal or a glass of wine. I felt like my life was stripped of so many joys. One thing I knew I could do was get a facial from a friend of mine. I scheduled two facials during chemo and I enjoyed every second of having my skin steamed and moisturized and cared for. I ordered extra clean and gentle products for my face and body, and I bought a wig and some beautiful scarves to wear when I did leave the house. The days that I did feel well I went on long walks with my husband, and we always went to a local bakery for a croissant when my tastebuds came back. I watched funny classic movies with my girls, and I binged on season after season of reality tv when I couldn’t leave my bed. I tried out a watercolor kit and painted a few things, and I worked on puzzles when family and friends would visit. We planned a trip to New York celebrate the end of chemo and one to Hawaii after I healed from my mastectomy. I needed every bit of this joy. Chemo days were long, and many were sad, but these small joys kept me going.

The Best Gifts For A Loved One Facing Chemo.

My most used and loved gift recommendations for any woman facing a cancer diagnosis and chemotherapy.

Chemo Skincare.

Clean and gentle products that I used and loved during chemo.

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Six Things I Wish I Knew Before Starting Chemo.