15 years ago, my mom had breast cancer. She was the first person close to me who was ever diagnosed with cancer, so this was the first exposure I had to chemo. She would go to the clinic every two weeks and have chemo on an outpatient basis.
As time has gone on, I’ve known a few more people who’ve fought against some form of the big C. Like my mom, these individuals have done chemo on an outpatient basis as well. Needless to say when I found out I’d have to be in the hospital for a month, getting around the clock chemo for the first 7 days, I was a bit perplexed. I was expecting the same treatment my mom and others had. Leukemia doesn’t work that way.
Before I get too far ahead here, I just want to say this — I’m clearly not an oncologist, pharmacist, or doctor of any kind. What I’m sharing is only related to my personal experience with chemotherapy that was specific to the type of cancer I have. Everyone’s experience is different and that’s important to remember.
A few things happened before I started my chemo treatments. My oncologist put me on antibiotics, anti-nausea medication, and anti-fungal medication. This was done proactively to help ward off potential infections once my white blood cell numbers dropped. One of the nurses brought me “The Cancer Book” – filled with info on all things cancer treatment at my hospital. The first thing she told me to read was the chemo section, paying close attention to the various side effects that could come with the drugs. The next thing I got was a stack of printouts about each chemo drug I was taking, plus the steroids. I read through each of these carefully, taking note of the most common side effects. I learned that there’s a specific term used with chemo, Nadir, which refers to when blood counts are the lowest during each of the treatment cycles. 7-10 days after treatment was the magic number for Nadir for my two primary forms of chemo, although I did have one additional drug, an antibody called Gemtuzumab, that has a Nadir of 10-15 days. This was helpful to know because Nadir is when I was most likely to get an infection or an illness. (I got both — which I’ll share in my complications post.) The side effects kind of threw me for a loop, however.
We’ve all heard the cliche side effects that come with chemo – hair loss, fatigue, loss of appetite. I did not realize that chemo could cause mouth sores, throat sores, and sores in your intestinal tract. I also didn’t realize it could cause finger nails to detach from the nail bed and come off completely. One of the drugs I was on had the potential to cause neurological issues as well (that one, thankfully, is not as common as the others). I was a bit anxious after reading about these. But, the side effects were all listed as temporary, they’d go away after I recovered, and at the end of the day they were better than the alternative—death. So, I summoned my inner strength, drew strength from my friends and family, and got ready to face chemo head on.
My experience getting the actual chemo drugs was relatively uneventful. I had a 24/7 Cytarabine drip for 7 days. I also had an Idarubicin push for the first three days. (A push just means that the chemo is administered directly into the IV line with a big syringe—see photo to the left). I didn’t start feeling icky until about the 5th or 6th day of the administration and even then, it started out with the fatigue and a tiny bit of appetite loss. But, by the end of the second week in the hospital, things started to go downhill.
I had a few swollen tastebuds on my tongue, which turned into mouth sores that continuously hurt. It hurt to eat food, it hurt to brush my teeth, and it hurt to drink anything but ice water. I got this “magic mouthwash” to use but it only lasted for about 45 minutes and then the pain was back in full force. I also managed to bite the inside of my cheek but thankfully that healed and didn’t turn into a big sore. My appetite continually worsened, to the point where nothing was appealing and I just plain didn’t want to eat. I had to force myself to get food down because I knew it was important to get the calories in and keep my body going. There was a period of about 5 days where the only thing that even appealed to me was Raisin Bran, so I had that for breakfast, lunch, and dinner. I joked to my friends, when nothing, even chocolate cake and lemon bars, looks appealing to the fat woman with emotional eating issues, you know things aren’t looking good. I lost 30 pounds in 4 weeks, which I attribute to both the carb controlled diet I was on for my diabetes and the fact that I wasn’t eating full meals for at least 2 of the 4 weeks. Ensure Max shakes became my friend because they provided calories and I could choke them down. My bones ached and the fatigue got worse. It was hard to get out of bed, I got exhausted just getting up and going to the bathroom. I’d never experienced fatigue before and now I have an entirely new appreciation and empathy for individuals who live with chronic fatigue. I can’t imagine that. I got super dry skin on my hands. My finger between my knuckles looked like scaly lizard skin. Aquaphor was a blessing during this time. And, of course, my hair started to fall out. It was about 2 weeks after my treatment and stared to come out in clumps. The hospital was kind enough to give me an electric hair trimmer, and I spent 20 minutes alone and in tears shaving my head in the bathroom. Hair will grow back and honestly that has been the least of my worries in all of this but, watching it come out in these sad clumps and then buzzing it all away was a bittersweet moment. I’m fortunate in that I didn’t lose my eyebrows or eyelashes. The curtains and the carpet are gone though but hey, that’s a free Brazilian, LOL.
Throughout this journey I’ve learned so much. (TMI warning – I’m about to talk about pee, lol.) When you go through chemo, you pee the cancer and the chemo drugs out. They’re flushing from your body. In addition to the chemo IV, they have a continuous saline drip going, so I literally had to pee almost every hour. Nobody else can use the same toilet as I do in the hospital. I have to double flush the toilet and on the oncology floor, they have special sanitizer that sprays in the bowl after. The antibiotics make your pee smell awful. I don’t even like going into the bathroom because that scent is burned into my memory. (The hospital hand soap also smells awful but that’s just a first world problem, lol.)
My IV pole quickly became my friend, since I was attached to it around the clock for a week. I named it Dory, because her motto is, “Just keep swimming,” and that’s what I was doing – forging ahead despite the roadblocks that came up. I had a PICC line during my initial stay (two PICC lines actually but again, I’ll talk about that in the complications entry), and for a bit after I was discharged. I named the PICC line Ghost, because I knew it would eventually disappear for good, as do those who ghost us. This probably sounds corny but the little things like this helped keep a smile on my face and got me through the day.
Other random tidbits of Chemo information:
· Not all pharmacists can prep Chemo. There are specific ones and should they not be in or not get your drugs prepped before they leave, you’re hosed and have to wait.
· Since Chemo is considered a hazardous drug, you can’t leave the floor you’re on when you’re getting it. I was able to walk the whole 5th floor for the first week but couldn’t do any other floors until the treatment was completed. Why? Because if the bag broke, it would be a hazardous spill, and that would cause all kinds of chaos for the hospital staff.
· There are designated nurses who can administer the chemo. They do this in pairs, with one nurse owning up in PPE, setting the chemo up, and administering the treatment, and the other double checking to make sure everything is accurate (hitting the 5 Rs of med admin, making sure tubing is connected appropriately, etc.). These men and women are living, breathing angels. And thankfully I had some pretty amazing ones to work with.
· Idarubicin makes your pee orange. This was not fun but only lasted a few days.
· There are a lot of tests that have to be done before chemo can start. Bloodwork, CT scans, MRI, EKGs, and Electrocardiograms. Every time I turned around someone was coming to whisk me off or hook me up to a machine. The good thing is everything came back good, so I know I’m healthy overall, despite the diabetes.
I tried to find ways to make this whole experience a little less intense. I found a cute chemo journal on Amazon that I can log each treatment in, what (if any) side effects I experienced, and how the treatment went. That’s been helpful because the Gemtuzumab gave me crazy chills after the first dose, so I was able to refer back to the journal and let the nurses know it happened and how long after treatment. Then we could watch for it on the next dose. I also thought it would be good to log what was going on because a) I wanted to chronicle this in my blog and b) I may write a book about this journey someday and I want as much detailed information as possible.
I’m going to end here because once again, I’ve already started to write a book for everyone. If you have any questions, comments, your own stories to share, please toss them in the comments below. I’d love to connect and have conversations.
Thank you for taking the time to read this. I can’t express how much I appreciate each and everyone one of you.