Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.
There is no easy way to say this – chemotherapy sucks. It just does. Even your oncologist won’t tell you otherwise. Is it as bad as the 80s movies (like Dying Young – omg)? No. It isn’t like that. Nausea meds have luckily come a very long way. BUT it definitely makes you appreciate every day of your life where you were a functional person without even trying.
I had 8 rounds of chemotherapy (one round every 2 weeks – 4 rounds of adriamycin + cytoxan [AC] and 4 rounds of Taxol [T]). Let me just be real with you all – the first session of chemotherapy was by far the worst for me, mostly due to the unknown. Some people walk into chemo with a shaved head ready to #killcancer. I am not that person. I walked in to the cancer center terrified and clutching onto the long hair that I was determined to keep until it was pried away from me. I always considered myself a pretty chill, laid back person, but chemotherapy and a cancer diagnosis changed that up pretty quickly. The whole time, all I could think was that I was about to voluntarily allow someone to poison me. Your whole life everyone tells you to make healthy choices…then you get cancer and they tell you to inject some random witch’s brew into your new port and cross your fingers.
I had my first chemo session on Friday, February 5th, 2021, the same day that my port was placed. Unfortunately, this meant that I had a bunch of medications going through my body in addition to the chemo (e.g., the sedatives for the port placement, the pre-meds for chemo [nausea meds, dexamethasone, Benedryl], not to mention what was likely a ton of naturally created adrenaline). The docs told me generally people feel worse when they get the port the day they start chemo, but in the end, I would do it again just to get chemo started as soon as possible.
The first thing the oncology nurses (God bless them because they are amazing) let me know as I was getting settled was that post-COVID chemotherapy is a lot less “fun” than pre-COVID chemotherapy (although I still question the truth of whether chemo can ever be fun 🤔). Pre-COVID chemotherapy apparently consisted of a bunch of people sitting together, almost like a support group, with therapy dogs, catered food, magic shows, support people, and all kinds of other activities. Volunteer groups would visit with care packages. If you have ever read John Green’s The Fault in Our Stars, then these would have been some of the cancer perks. Post-COVID, no cancer perks…just cancer. I could not even take my husband with me for the first chemotherapy session. Patients weren’t able to comfort one another because we were in different rooms or separate curtained off areas. I get it – we are in a pandemic, but it was really hard to be scared, with someone you don’t know injecting you with toxic chemicals. Then, that person leaves you there…in your own area…alone…with nothing but a call button. I’m just saying – a support person would have been nice.
I received adriamycin first. Just so you are prepared, adriamycin is bright red (literally kool aid red) and nicknamed the “red devil”. When I saw it, all I could think about was how in nature, all of the scary, poisonous creatures are bright colors. The devil’s kool aid was what I was most worried about (they don’t call it red devil for nothing), but it actually went in fine. The nurse sat in front of me and pushed it in my line over what felt like 10-20 minutes. It was quick and uneventful. Then came cytoxan. I was so worried about adriamycin that once that was done, I thought I was good. I didn’t even worry about cytoxan…until I started getting dizzy and realized I couldn’t feel my lips…and then soon my tongue. I called for the nurse and, luckily, once she stopped the infusion, it didn’t get any worse. They gave me Benadryl and the infusion went on without any more issues (unless you count an uptick in anxiety). From that point on, I had to get Benadryl before every cytoxan drip and I needed a longer infusion time.
Since I went in for chemo on a Friday, Dr. Google said I would probably feel okay Friday and Saturday, with the bad symptoms starting Sunday into Monday. Well, mine did not quite go like that. I felt completely off and exhausted as soon as I got home on Friday. My body just felt weird and I was really weak. I tried to sleep, hoping it would help, but at 1:30AM I woke up shaking uncontrollably from what felt like chills, and my hands and lower arms were swollen. That was the first call (of many calls over the 8 cycles of chemo) to the on-call oncologist, who said it sounded like a continued allergic reaction, so I took some Benadryl (which became my standard routine moving forward). Then, I slept until 7AM and woke up still swollen, with a puffy face. Seriously?! With that, they actually had me go into the office on a Saturday to be seen. The doctor said that I was okay and it looked like continued allergy – so, more Benedryl. I went home, changed my shirt, and accidentally ripped the Neulasta patch off my arm. 🙄 I almost cried. So, on Sunday, I went back to the doctor to get the replacement shot. As a new patient, I was 100% sure the office was loving me already. I felt BAD on Sunday morning – weak, nauseous, exhausted. Also, it felt like my ears were under water or like when you have a cold and they are congested. I thought that might be the height of my symptoms, but boy was I wrong. Monday I woke up and could barely even walk. Think serious car wreck combined with the regular flu and a stomach virus. That’s how I felt. Ingestion of food and water was completely offensive to me. I hadn’t done a #2 (sorry TMI). My heart rate felt absolutely insane (~90-100 bpm at rest and ~130-140 ppm walking super slowly). I had to go to the cancer center to get fluids and was wheeled in there in a wheelchair. That was the first, but not last, time that I really felt like a cancer patient.
On Tuesday, it felt like my chest was on fire with a constant burning pain. Eventually, I needed to start a proton pump inhibitor (PPI) to control the heartburn. I couldn’t eat, drink or get comfortable. I couldn’t take a deep breath. I had bone pain from the Neulasta during the night in my hips and knees, but was able to fall back asleep. The next day, I noticed that my bedroom turned into a pharmacy with all the nausea meds, cream for my port, Claritin, Benadryl, Tums, Miralax, Colace, Senekot, Gaviscon, Tylenol, etc. By Wednesday, I started to feel a little bit better and each day it got a bit better from there. I generally felt I was at about 70-80% of my pre-chemo state the day before I had to go back to get the next infusion. In other words, unfortunately, I did not get much time where I felt good in between infusions. This seems to vary a lot from patient to patient and I think I was a bit on the worse end. I had a lot of side effects, but the heart rate issue was probably the most limiting. They had me wear a heart monitor and saw some pre-ventricular/atrial contractions, as well as sinus tachycardia…all uncomfortable, but considered pretty benign. I also had one episode of ventricular tachycardia – not benign and very dangerous. I had continued visits with a cardiologist and had 3 echocardiograms during the 16 weeks of chemo.
Most of the adriamycin and cytoxan rounds felt about the same, but it did seem to get a bit worse over time as my body was more and more battered after each round. Also, random weird things would pop up. Like all of a sudden, my ears would start ringing a lot for a cycle, or for my 2nd, 3rd and 4th cycles, my face was bright red for 2-3 days. I also had some minor neuropathy in my hands and feet on adriamycin and cytoxan, which is pretty uncommon. My blood pressure on the days after chemo, even when drinking a ton of water was low (lowest was 88/53). I never felt like eating or drinking but really tried to force it every day.
Many people say that Taxol is a lot better than AC, so I was just trying to hold out until I switched over. One friend who also had the same treatment (AC-T) told me that “Taxol was a breeze”. For real – direct quote there. Now, would I say it was better than AC? Definitely, yes. But a breeze? Nope. Just definitely no. Taxol caused these shooting pains all over my body, but I admit that cognitively I was much more present. I preferred that over the train wreck I felt like on AC, but it still hurt, I was still laid up in bed, and also, unfortunately, my heart rate issues did not improve at all. On the other hand, I felt pretty good Friday night and Saturday after my infusion, and I started to feel hungry again. It was incredible to be able to eat. One really annoying thing about Taxol was trying to freeze my hands and feet throughout the infusion to prevent neuropathy. After the first infusion, I swear I had frost nip (really minor frost bite) from being too aggressive with the icing. After that, I made sure that I paid much more attention regarding cycling in and out of the cold. Also, I was on dose-dense Taxol, and again had some allergy issues, so my infusions were 4-5 hours long. That is a lot of time on ice. I did get neuropathy, but it was mostly numbness and did not progress to anything painful. As of the time I am writing this (~8 weeks after my last chemo infusion), the numbness is still there, but not really noticeable during my day-to-day activities. It is probably a 2 out of 10, so I think the icing helped. Taxol also causes some skin to get darker and caused my nail beds to slightly darken, but not enough for me to have to paint them. I was nervous about losing nails, but that did not happen. None were even loose.
When I pulled together this post, I was not really sure how to write it, since the chemo experience is going to be so different for everyone, but there were a few things I did that I think helped:
- No matter how bad I felt, I forced myself to drink at least 64 ounces of water a day. On days when I felt better, I aimed for 90 ounces.
- I went to the Cancer Center every Monday after my infusions for IV fluids. With my heart issues, they often also gave me magnesium, and also gave me dexamethasone to help with pain. I did not realize how much that steroid did until one Taxol infusion where I said I didn’t think I needed it. I was up all night in terrible pain.
- I decided to go vegan during this experience, but I did let myself eat what feels good. So, if I could get air fryer French Fries down, I ate them. I lost ~25 lbs during chemo (I’m 5’6″ and started at 143 lbs, went down to 118 lbs).
- I drank a nasty green juice when I could get nothing else down (kale, celery, cucumber, wheatgrass, and pear). I held my nose and chased it with water. It was rough, but all food was pretty rough (particularly during AC).
- My doctor recommended B complex for the neuropathy. Not sure if it helped, but she said she has seen success.
- I did not talk about hair loss above since so many blogs go into that. It is traumatic and no one can prepare you for it, but I do not regret NOT shaving my head until I had to. I felt like myself for longer and I did not mind the shedding. I chopped it to a bob cut myself about 3 weeks in and even after hair fell out, I had enough that with a cap, it looked like I had hair. Then, one night, when I realized I was starting to look like Gollum from Lord of the Rings, I decided enough was enough and pulled out most of my hair in the shower (I say pulled, but it came right out). Then, the next day I actually shaved it. This was probably around 4 weeks in. Do what is best for you.
- Keep nails and toenails cut short.
- Ginger candies are awesome…and I actually hate ginger, but they really worked.
- Make sure you are pooping and if not, take something. I lost sight of this one time….and I paid for it.
- If possible, have people check in with someone else on your status during chemo. My husband updated family and friends so I didn’t have to worry about responding to text messages. In hindsight, I should have just done this blog in real time and given everyone the link (oops!).
- If you have kids, have the tough conversation before chemo. This was terrible, but we did it. My 9 year old son actually asked if I was going to die and I had to say I didn’t know, but the doctors were doing everything they can. The school gave us a little printed out book called My Mom is Sick, which was great. It talked about hair loss and being tired, etc. He was actually really prepared when chemo time came. When he saw me bald for the first time he said “You look different but you are still mommy”, which was from the book. He also told me once to “stop crying because we did that already” lol. Smart kid.
- I gargled with a water, baking soda and salt combo 3 times a day to prevent mouth sores and actually never had any. Not sure if it was the rinse, but it was so easy that it was worth doing.
- I bought one of those port sweaters to wear to chemo and loved it. That and a pair of leggings were my chemo uniform.
- Get help. I was going through chemo during COVID, so we didn’t have many people come over to help…and it was bad. I strongly recommend NOT doing that and getting help where you can, if you can.
- Buy a blood pressure cuff and a pulse oximeter to have at home for the rough times. It helps you know where you’re at.
- Figure out what activities keep you happy during chemo and make sure you are prepared with that when you go. Some people want to work, others want to read a book or color or meditate. It just depends. I liked to stare at my IV lines to make sure there were no huge air bubbles and then laid there paranoid. No, I am kidding – well, half kidding. I actually liked coloring – it was soothing.
We are pressed on every side by troubles, but we are not crushed. We are perplexed but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. 2 Corinthians 4:8-9 NLT
Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.