The first week after the first infusion was the worst one overall. Your body has a difficult time figuring out what to do with the drugs in your system. The nausea lasted less than one week for me, but the fatigue, although worst the first week after each treatment, was always there.
It was a workout just to take a shower. I was huffing and puffing and not physically able to squeegee the glass shower door. During weeks two and three, while I was able to clean the shower door after showering, I moved very slowly.
It might seem counterintuitive, but going for walks helps you not feel as exhausted; especially when combined with sunshine. I took many short walks outside. Usually very slow ones as they took a lot out of me.
The pre-med steroids make your face round and ruddy. It is not a pretty look, but there is not much you can do about it. I also gained about 20 pounds, which I did not need, but it is better than losing weight. You need your strength so you can fight. I am very slowly losing the weight I put on, and I no longer have the steroid moon face. Progress!
The second week after my first chemo infusion my mouth started hurting. It became increasingly difficult to eat, swallow, and brush my teeth. Nothing tasted good, my mouth and throat hurt, and my teeth became sensitive.
I turned my electric toothbrush to the sensitive setting, and started using the children’s bubblegum flavored toothpaste I kept for our grandchildren in our spare bathroom. It helped, but the pain still got worse with time.
When the pain in my throat started I realized I should have chewed on the ice the nurse offered me. I started doing this during the second infusion, and each one after that. I don’t know what would have happened if I had been smart enough to chew ice during the first treatment. The sores in my mouth have not completely gone away yet, more than 22 weeks after the first infusion, eight weeks after the last one. I am, however, able to enjoy food and it does not hurt to eat any longer.
Craig did almost all of the cooking, but the easiest thing for me to eat throughout the treatments was soup. I made a couple of different pots of soup the week before the infusions and froze them in one cup sizes. I found a brilliant product that made this very simple, W&P Cup Cubes Silicone Freezer Tray with Lid. We still use it as it is very handy for when you don’t have much time or energy to cook.
My scalp became sensitive about one week after the first infusion. It felt like someone was constantly pulling my hair, and the hair “acted” as if it was dirty, even when it was clean. This got increasingly worse to the point where it was difficult to sleep.
About two and one half week after the first treatment my hair started coming out in small handfuls. Because the scalp felt so uncomfortable I asked my husband to shave off my hair. He did this three days before my second infusion.
When shaving you need to be careful so you do not get cuts on your scalp. It is also important to not shave too close as that could cause ingrown hair. This and cuts can give you infections which could be very bad when your immune system is down. Craig felt bad for me and told me I could shave his hair as well, so I did. He liked his very short hair so much that he has kept it that way. A dear friend shaved her hair in solidarity. I have some fantastic friends.
Becoming bald was not as traumatic as I thought it would be. It was worse when I realized my eyebrows and eyelashes started disappearing. You can wear wigs and headwear to cover up your non existent hair if you want, but there is no mascara that can make you look like you have eyelashes.
It took less than one week after I Craig shaved my hair for my scalp to be less sensitive. It was at the end of October, so it was pretty cold outside. I have one wig, which I have never worn out, and many head coverings of different thicknesses depending on how cold it is. With no hair to keep the scalp covered my head gets cold fast.
NEWS! My hair started coming back fuzzy and bright white in January. I felt very much like a baby 👶 Now that is has grown a little more, it is a salt and pepper color. It will be interesting to see how it will end up. I hope it will be a pretty color so I won’t have to color it.
I had headaches, a constantly runny nose, runny eyes, and nosebleeds throughout the treatments, and was allowed to take acetaminophen for the headaches. I never knew if what came out of my nose would be clear or blood, but found that if it was a nosebleed, Afrin does a good job. It stopped them almost immediately.
It was difficult to sleep - I spent a lot of time up at night eating toast with a lot of butter to make the bread soft and not hurt so much going down. While eating I worked on puzzles.
My skin became VERY dry and cracked. I slathered lotion on my hands and feet any chance I got. Don’t know if it worked, but at least I knew I did what I could to make it better. Around the sixth, and last, treatment my fingers were so bad I could not open containers. I needed help every time.
Although I was good at icing my hands and feet during the infusions, the neuropathy got worse towards the end. My hands and feet started out a little numb after the second treatment and became more so over time. Towards the end my appendages were hurting rather than feeling numb. Today, eight weeks after the last treatment, my fingers and toes are no longer hurting, but are still numb, although not as bad as they were.
After the third infusion I found out the importance of taking the pre-med steroids as prescribed. I messed up and took only one pill instead of two for each of the six doses. Chemo brain is very real.
This caused me to have shortness of breath, my chest felt very tight, I had more severe headaches, and was more loopy than after the other treatments. It was a miserable five days, and I did not mess up on my medications again.
December 28, 2023 I rang the bell after my last chemo infusion, but it was not until almost one week later, January 2, 2024, it hit me that I may not need to go through this again. The closest I can explain the feeling I had is the exhilaration you have after giving birth. It was a fantastic feeling!
The W&P Cup Cubes Silicone Freezer Tray with Lid. I fill up the cubes, then put the container in the freezer. When frozen solid I take the food cubes out and put them in ziplock bags.This way I can freeze more cubes if needed. We keep several kinds of soups and other foods on hand in the freezer.
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