I am so relieved to be through chemotherapy and the side effects that accompany it. I wanted to have a centralized place to share what my body, and mind, was going through over the last five months – hopefully you never need to know this information for yourself, but maybe it will help someone. So, here is is! PS…what I learned by talking to different people was that each chemo cocktail is different and every person is different – so this experience is unique to me.
I lost my hair! There is a recent trend of cold cap therapy which in some cases helps you keep it – however, it is expensive, time consuming and doesn’t always work. So I buckled down and gave myself a pre-chemo haircut and then two weeks after my first chemo my started falling out in chunks, so I shaved it. I probably shouldn’t have let my kids pull it out because then I had random bald spots from the root, but hey – they thought it was fun. Some people shave their head all the way down to the scalp. I went for the razor with a small guard so I rocked a very uneven bald head. On the top I had some little hairs and on the sides it went pretty bald.
I lost hair most other places too – about 75% in different areas like my arms, legs and eyebrows.
TIP: Get your eyebrows microbladed. Really! Especially if you’re not a natural makeup person like me and would have no skills to draw them in yourself. You have to do it before chemo starts because of the chance of infection after your first infusion.
I got two wigs – a short bob and a long purple one that I thought my kids would like. My dog ate the purple one!! The bob style was pretty close to my natural hair lenght so some people didn’t know they just commented on how they like my hair color. I only wore my wig to work and most other times I rocked a baseball hat. Wearing a beanie or a scarf made me feel like a cancer patient.
In addition to my hair, my body responded to the chemo in other ways as well. My nails grew fast and the nail turned dark in some parts. Some people’s full nail(s) turn black and fall off. Thankfully that didn’t happen to me. Also, you’re not supposed to get a pedicure or manicure during chemo because of infections. I just got my first pedicure and shaved my legs for the first time in months – it feels good!!
I did get a few rashes during the chemo process. The worst was right after my first chemo – my body’s first response to this foreign invader. The rash was itchy and spread up my chest to my neck. I think the sun made it worse. I used some itch cream and it helped a little. Thankfully it only lasted a few days. My face also broke out really bad during after the first infusion and I had a forehead full of red hot zits. Thankfully that was also short lived.
The WORST was the mouth sores. I got these really bad during the first, fourth and sixth infusion. I am not sure why it was random like that – and thankfully I didn’t get them every time. But when I did get them I had five to seven big ulcers inside my mouth and on my tongue and nothing helped. I tried over the counter and prescription “magic mouthwash” and nothing numbed the pain. It was hard to eat, drink and talk. They started about two weeks after my infusion and lasted about four to five days.
There are some dark days, especially when you’re feeling yucky after chemo. I would get myself in a mental funk when I wasn’t able to keep up physically. It was a reminder that I was sick. Also, it doesn’t help to hear CANCER everywhere you go – billboards and radio commercials when you drive, Facebook and social media, tv shows and movies and even the books I was reading mentioned people having or dying from cancer. It was everywhere. Oh and the WORST…you would never notice this but there are so many kids movies and TV shows where the child lost their mother at a young age. KNIFE IN THE HEART.
I also became a hypochondriac. I felt pain in my back and thought, the cancer is there. I felt weird sensations in my neck and thought the cancer spread. I heard from other survivors this is common for a while after you’re diagnosed but eventually fades the longer out you are. It’s good to pay attention to your body, raise your concerns to the doctor and then get over it!
TIP: every infusion I had to get my labs done the day before. The first few times I looked and noticed if a few were high or low. One time I had a number that was on the very high end of normal and I googled it and the results made me freak out. I went to the gym to do a sauna meditation to relax me before my appointment – which was not needed because when I met with my doctor he said all my labs were fine and the spike was from the steroids I was taking.
So yes, there were days and weeks where I would think, I am going to die. But thankfully I was able to use meditation and other tricks to stay in the moment and keep positive and tell myself I am fighting this and I will win. And the encouragement from all my family and friends that reinforced my will and strength was super helpful – shout out to my chemo visitors and to my Sutter work family who during each chemo cycle would have a super positive card and little gift to keep me going.
Before chemo I met with my nurse navigator for “Chemo 101” and learned that I need to be very cautious of germs. Kind of hard when you have two little snotty nose children and are in the middle of a very yucky flu season. For the first few weeks I avoided crowded areas like the gym, I wore a mask with my kids if they were coughing, and I had my dad de-germ my house. Slowly I became more relaxed and even with all the others in my house getting sick multiple times, I stayed healthy and my blood cell count and other labs were always within the normal range. I really think my exercise and good nutrition / supplement regime helped my immunity.
When I first met with my oncologist he gave me the option of my chemotherapy cocktail. He said both were effective, but one was harder on my heart, and only five treatments. The other gave you short term yucky GI symptoms and six treatments. I went with the cocktail that was easier on my heart. And so for me, my main side effect after an infusion was nausea, diarrhea and constipation. I would grade how I felt each day on the margarita scale. Day 1 and 2 after chemo I only felt like I had two margaritas. But day 3-5 it felt like I had an all day and night tequila bash. They prescribe Zofran for the nausea which takes the edge off a little, but makes you constipated. For me after day 5 I started feeling better and a week after an infusion I would start feeling like myself again.
TIP: Acupuncture was suggested by my integrative medicine provider and I started it after my fourth infusion. What a change! I wasn’t stuck to the couch for the days following chemo and I was even able to eat, do light exercise and keep up with the kids. See my acupuncture schedule at the end of this post.
It would be no surprise that going through a crazy experience like having cancer would create some sleepless nights. Combine that with the steroids they want you to take during your infusion week and there were a few days in a row that I would only able to get two to three hours of sleep. I tried melatonin, marijuana and other things to try to get to sleep but I think the thing that helped the best was the acupuncture. OH and it’s so weird, but I would have to get up at night and pee about a dozen times. Not sure if it was all the water I was drinking or my body detoxifying all the yucky chemo.
Something that was a surprise was that chemo put me into a treatment-induced mini menopause. I lost my cycle and got night sweats. The night sweats also affected my sleep and acupuncture seemed to help a little.
Thanks to the combination of the insomnia and toxic chemotherapy, my body felt run down at times. I would usually have some energy mid-morning but in the afternoon I would need to rest or nap. Giving up my daily coffee didn’t help either. I listened to my body when it told me to rest and thankfully my job has been flexible and I was able to work mostly from home part-time.
Being a very active person pre-diagnosis (I was in the midst of training for an 8 mile Spartan race) I was worried if I would be able to keep up my aerobic and strength training. I enjoy working out and challenging myself and thankfully I was able to keep up with most of my workouts during the five months of chemotherapy. There would be some days that could only muster up a 30 minute walk, but getting outside even when I wasn’t feeling well helped keep my mind sane. The only thing I stopped was fast running (had to cancel my OrangeTheory Fitness membership) – I was getting a pain in my breast where the tumor was and I was afraid of causing any additional inflammation. So I mostly stuck to swimming, cycling, walking, yoga, HIIT and weight lifting. I did feel a little muscle atrophy from the chemo and went a little lighter on weights, but I think keeping it going helped my body and mind stay strong.
Towards the end of my treatment I was experiencing muscle weakness and spasms. I could feel that even though I was continuing to lift weights my legs would atrophy a little faster than normal and at times I would get intense tightness in my legs. I am hoping that this slowly fades.
One common side-effect from chemo is tingling in your hands and feet, aka neuropathy. I had a few short bouts of tingling that would last a few minutes and then go away. I heard acupuncture can also help with this, however mine never got very bad thankfully.
I did have a few experiences with short term blurry vision. It freaked me out a little the first time, but thankfully it went away.
|Appointments||Blood work @ Lab||Appointment with Oncologist
Chemotherapy ~5 hours
|Diet||Water fast||Water fast||Water fast until 12 pm||Acupuncture
|Energy/Side Effects||No side effects during chemo day||Tired / fatigue (less with acupuncture)||NAUSEA
Well, that wraps up what I remember about my chemo process. I still have my targeted therapies (Herceptin & Perjeta) every three weeks in the infusion center for the next five months. I have done my first infusion without the chemo agents and I don’t seem to have any side effects.