What to Expect in Chemotherapy
My experience on 12 weeks of Taxotere and Cyclophosphamide
My name is Steph Kennelly. At age 37 in November 2020 I was diagnosed with IDC e/p+ her2- Stage 2, 2.3 cm left breast tumor with clear lymph nodes. I had a double mastectomy with expander reconstruction and nipple sparring. With an oncotype score of 25, 12 weeks of TC chemotherapy was recommended.
I’ll start by saying that my experience may not be like yours. All chemo cocktails are different and all reactions are different. However, it may be helpful for your journey to read my perspective.
Here is what I know.
The Port?
Do yourself, and your nurses, a favor and get the port. Even though it is another surgery and will hurt for a week or so, it is totally worth it.
What to Pack?
I must have looked silly strolling into my first chemotherapy appointment. A bag on each arm, an insulated lunch box, my large handbag and a rolling suitcase! I’ll admit, I panicked and overpacked. Save yourself the trouble. Here are the things you actually need to bring with you.
Electronic Device and Accessories
A friend told me to think of treatment days like a long plane ride. I think this is a good reference point. Needless to say, you want to make sure you have all the electronic devices, accesories, and content. I always made sure to have shows, movies, and podcasts downloaded and ready, for a variety of moods. Also make sure you bring headphones (noise cancelling if you have them) and the longest charging cord you can find!
Other Entertainment
You may see some suggestions for word searches and crossword puzzels. For me, I had a hard time focusing on any task that was too cognitive. I always brought a gossip magazine to browse the photos.
One of my favorite ideas was “Letters for Chemo”. I asked my friends and family to handwrite letters. I would bring the pile to treatment. I had a little ritual of reading each letter and texting the writer. The whole process took over an hour and was a great way to spend the time. I also recommend signing up for Chemo Angels. This organization will pair you with a penpal throughout treatment.
Get Comfortable
In my opinion, don’t bring pillows and blankets. They are a pain to lug and you will just need to wash them. My center had blankets and pillows, cleaned and heated, for patients to borrow. I would recommend wearing comfortable clothing. Cozy socks, a top with easy port access, and maybe a sleep mask should be sufficient.
Food/Water/Snacks
My center offered a wide variety of food and snacks. If your appointment is over the lunch hour, you may want to bring a sandwich or something more substantial. Otherwise, I always made sure to have hard candies in my bag. Lemon and mint flavors worked best for cutting through the metallic taste, especially the port flush.
What is going on in my mouth?
I can not stress enough how thirsty you will be. Gather the water bottles and straws and have them filled with ice all over your house. You won’t be able to drink enough. If/when water starts to taste metallic, add in some gatorade for flavor.
Here is my tip for chemo snacks. Before your first treatment make a Target run. Buy ALL of the prepackaged snacks (pretzels, nuts, granola bars, etc.) and put them in a big bin. Then, set a timer to remind yourself to eat a little bit every hour and see what in the bin looks good at the moment. Eating often can help with nausea and having a variety of choices is helpful too.
Side Effects?
Don’t get too freaked out about the side effects. It’s a long list. Some will hit you hard and others will never come to fruition. I would recommend taking it day by day and assuming ANYTHING is a side effect that should be reported to your oncologist. Here are a few that I experienced.
- Follucuticis
This is a fancy name for infection of the hair follicles. It will look like red and itchy bumps on your scalp. Don’t wait- call your oncologist right away and get on an antibiotic.
- Reaction to Taxotere
I’ve never been one to have acne. However, after my first treatment I broke out all over my face and neck. The bumps also burned and were very itchy. My oncologist put me on a steroid and reduced my dosage on subsequent treatments.
- Nuelasta Bone Pain
This pain is the real deal! Be prepared for 24 hours after the shot to have horrible bone pain. Try non-medical interventions to shock the nervous system like cold packs/showers and hot baths. Also, as hard as it is to imagine, move the body. Try walking, stretching, or foam rolling. Medical interventions include Claritin (nobody knows exactly why this works, but I took it twice a day), pain meds (I took Vicodin) and Cannabis.
What about my hair?
This is such a big topic, I need to dedicate a separate blog to this experience. But, here are my highlights.
I shaved my head, buzzed to a level 3, a week before my first chemotherapy. Around Day 10 after my first treatment, the hair began to fall out. Day 14 it hurt badly and was very tender. I vigorously shampooed and then lint rolled in the shower. Yep, I said lint toll.
Day 20 I went back to the salon and had them buzz down what remained (about 20%) to the nubs. I also had some professional photos taken, which I highly recommend. There may even be someone in your neighborhood who will do it for free! I went all in on wigs and fun head coverings, and I can honestly say that I don’t miss my hair.
Chemotherapy is hard, but doable. Remember the treatments are cumulative, so the first round will feel better than the last. Give yourself grace, space, and time to heal. And remember to recognize your accomplishments upon completion!
Reach out at stephanie.kennelly@gmail.com or on Instagram @stephkennelly
