When I first decided on the idea of a monthly guest blogger for 2021 there were a few people I particularly had in mind. Lauren Lopriore from Liv & Let was one of them!
As soon as she agreed to write for this month, I prayed she would also agree to write a list of all the things to expect during chemo and she was more than willing. I get emails on the weekly of women asking all sorts of questions, and I can only speak to my experience as a friend/caregiver, or what I saw/went through with the close people in my life that have had cancer.
So for Lauren to give us the real deets, I feel so honored! Not only is her list detailed and compassionate, I am in love with her new business and have a fun announcement at the end of the post!
Onologists and Breast Surgeons can offer a list and share what they know about chemotherapy side effects and healing, but many are not able to tell you first hand the experience you could have when going through treatment to fight your cancer. I started my breast cancer treatment with chemotherapy and went into it knowing that there would be side effects including loss of hair, lack of appetite, loss of taste, feeling tired and weak, nausea, diarrhea as well as forgetting and finding it difficult to get words out. I was provided with this list and took as much of it as I could in. A list of side effects cannot prepare you for what you actually experience after each delivery of toxic drugs into the body with the sole purpose of killing rapidly dividing cancer cells.
Here are 8 things I did not know about chemotherapy and the experience I would have:
- THERE WOULD BE PAIN: Before chemotherapy can be administered, a port is placed in your chest or arm. The directions for my port placement was on the right chest wall. Due to scheduling, my chest was cut open and my port was place the morning of my first appointment. I am not a meaty gal in the chest so the port was a hill, not hard to spot. The area was tender, but I didn’t think about it too much as there were pain meds used. A needle would administer the drugs through the port and into my body. No one told me the PAIN I would encounter when the needle touched my skin. I have a high pain tolerance and have experienced pain, but this was unlike anything else I’ve ever felt before. There was no turning back. The needle was in and I thought about how I was going to last the entire day. Each appointment the sensation and pain was relieved, but I’ll never forget that first day. Due to the placement of the port running over and cutting into my chemo appointment I would have to go back the next day to complete the remainder of the toxins. Oh joy!
- TASTE WOULD BE BUTTER: It could change your taste buds to make things taste like metal and when you have metal in your mouth the flavor of your food could be ruined. I wasn’t informed that when drinking water, it could taste like melted butter. I mean I was prepared for metal - not really knowing what that meant. Would it be like eating a coin? Butter was good on toast and potatoes, but drinking it now that was awful. “Stay hydrated” I was told. The idea of drinking water each day the first week of my toxin drip was about the last thing I wanted to do. Most days I ate very plain. The menu I had the first week consisted of bread, pasta, chicken, rice, carrots. As I entered the second week, the menu stayed about the same as I was still a little nauseous and on the toilet. Luckily the third week before I had to turn around and do it all over again was a week of eating more flavorful foods and enjoying gallons of non-butter-flavor water. It wasn’t until I found out citrus was a helpful taste that wasn’t impacted much by the chemotherapy. Orange, lemon and lime wasn’t a part of my everyday diet, however I added these flavors to my water. Vitamin water orange and lemon became my way of hydrating. It was the only way to have water in my diet without making me even more sick.
NAPPING WAS A MUST: Napping has just never been a part of my day. I spent most days going going going and not really stopping until I crashed in bed at night. While friends in college would take afternoon naps, I was busy doing things. Most likely I was afraid of missing out on something. To this day, the thought of taking a nap is the last thing I think of doing, even if I didn’t get a good night's sleep. Well, I had no idea what chemotherapy does to your body. I was told I would be tired, but not to the extreme I felt. The first week, I definitely fought resting during the day. I was still working from home so knew I needed to get hours in, but also knew that if I was home house work needed to get done too. It wasn’t until my second dose of taxotere, perjeta and Herceptin that I gave in. I had been admitted to the hospital a week after my first dose with a fever and lack of white blood cells. I knew that it was time to give my body a break and that I needed to rest any time that I could!
- FEVERS ARE TRULY AN EMERGENCY: My doctor explained that it was important to take my temperature while having chemotherapy. If at any time I had a fever over 100 it was considered a medical emergency and it was vital that I call them and go right to the emergency room. It was only a few days after my first infusion and I was wrapped in a blanket on the couch. I felt a chill and was tired. My husband - the most amazing caregiver- was really great about asking how I felt and taking my temperature. I on the other hand always said I was fine even though I felt like garbage. He asked how I felt and based on my answer he immediately took my temperature and said we are going to the hospital. He called my doctor to let her know we were heading to the emergency room. I had so many thoughts going through my head. When we arrived we had found out that my doctor had already let the nurses know I was coming. They took me to a room, pulled the curtain and started hooking me up to IVs. I had no idea what to expect and all that I thought was that my cancer had gotten worse. After a few tests, I would find out that I had no white blood cells and that my body would need to rest for a few days with fluids at the hospital. I had never been in the hospital for myself so I couldn’t imagine what I was going to experience. It’s important to know the symptoms, side effects, what it feels like to feel normal and what it feels like to feel “off.” A fever is “off” and going to the hospital is a must!
- CHEMO BRAIN IS REAL: Chemo Brain was explained to me as mild forgetfulness, having difficulty finding words (that are on the tip of your tongue), struggling to remember dates, names, phone numbers, trouble concentrating and difficulty multitasking. This is truly no joke. I didn’t have the best memory and using big words has never been my forte, however now adding toxins to make it worse was just not pleasant. A few years went by and I would continue to forget dates, names and have difficulty finding words. I just didn’t understand how I was struggling so much. Was this going to be my new normal? Was I going to constantly forget? I started blaming my forgetfulness on the chemo brain. How could I still use it as an excuse. Well I would find out later that the brain fog could last a while after treatment. I did some research and found that doing brain games would be helpful so I downloaded Luminosity. Doing some brain games in general couldn’t hurt, only help. I don’t do the games often now, but years ago I did them weekly. According to Dana Farber: “ One study suggested that people who receive both chemotherapy and tamoxifen may have more prolonged cognitive symptoms than those who receive only chemotherapy. Tamoxifen and aromatase inhibitors may have a subtle negative effect on cognition, especially verbal memory and word finding. Tamoxifen is probably more likely to cause problems than aromatase inhibitors.” * I am now on to my fifth year taking tamoxifen and I’m pretty confident it’s either the chemo fog continuing longer that it usually does or that the tamoxifen has some effect on my memory and word finding. So when you are a few years out and still can’t find the word you are looking to say - don’t get flustered, it’s going to be ok. I wish I had known that I wasn’t going crazy.
- ACUPUNCTURE IS AMAZING: It wasn’t until after my second round of chemotherapy that I looked into what acupuncture was and how it could benefit me through treatment. I don’t recall this being spoken about this in my treatment plan, but in conversations it was mentioned that acupuncture was a new way of relieving pain with chemotherapy. “Researchers propose that acupuncture stimulates the nervous system to release natural painkillers and immune system cells. They then travel to weakened areas of the body and relieve symptoms. Studies show that acupuncture may: help relieve fatigue, control hot flashes, help decrease nausea, reduce vomiting, lessen pain.” ** I was a little unsure about this, but I had to believe that it wasn’t going to do more harm to what my body was already going through. After the first session I found that not only did my nausea decrease each week, but the side effects were shortened. Instead of tasting butter and being extremely tired for 6-7 days, I would experience the effects for 4-5 days. It still took time to get to feeling better the second week, however with the acupuncture I was more relaxed. Who knew that a bunch of little needles put all over your body could do so much healing and relaxing.
- DRY MOUTH, NOSE, BODY IS NO JOKE: I have always had dry sensitive skin, but I would never experience the scaly skin, bloody noses and mouth sores like I did on chemotherapy. I would experience my first ever bloody nose and many more following this one. The red that bled from my nose not only scared me but made me question what was happening with my body. My nose stayed pretty dry for months after. As I mentioned my skin was always dry, but the reptile scales that I saw on my arms, legs and hands were unlike any I’d seen before. I did the best I could with constantly applying moisturizer. It didn’t change the dehydration I felt. Lastly, I had had mouth sores (canker sores) before, but the dryness on top of the butter taste on top of the sores was just so uncomfortable. Biotene was my go to item for this, but it didn’t solve the issue 100%. Cuts on the side of my mouth and sores above my lips burned with hot, spicy and acidic foods. Mostly making eating and drinking pretty miserable.
- NAILS ARE CHANGED FOR A LONG TIME: I never had good nails. I have always worn them short and they always broke easily. After my first week of chemotherapy I started to see that the wear and tear of my nails was going to be on the decline. Not only does chemotherapy affect your hair, but it does a number on your nails. I was informed that there could be some changes to my nails, but I was never made aware that my nails would break a lot easier, detach from my finger and be completely discolored. It took a few years before my nails started getting their strength and color back and a manicure no longer hurt.
Taxotere, Perject and Herceptin were my toxins. My hair fell out, my white blood cell count was completely zero (at one point), my nails were discolored, my mouth and skin dried out, my brain cells were challenged and my body was exhausted. I may not have known all I could have about my chemotherapy and its effects, but despite all this I am here now to talk about my experience so that more can be informed!
Stay strong, fight hard, you are not alone!
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