There are many types of chemotherapy protocols, and they are administered differently. My first one, I was admitted to the hospital for four days to get it. My second protocol, about a year later, I went in to the Day Hospital on days one and eight of the 21-day cycle. For my current protocol, I go to the Day Hospital to get hooked up and then take my chemo home with me in a bag. I go back to the Day Hospital 24 hours later to get unhooked from it. This section is about preparing for my current chemo regimen.

Amy Koch's Chemo BagBecause chemo affects my taste buds and my stomach, there are certain foods I can't or won't eat during the first 10 days or so of the 21-day cycle. Sadly for me as an overweight person, there are some foods that I crave and eat way too much of during this time. The weekend before I get my chemo, I stock up on foods that are healthy, or not too unhealthy, and that I know I will be able to eat. Even though fresh vegetables are difficult to digest during the first five to seven days, I try to get those to make green smoothies. These are easy to digest and seem to help alleviate some of my brain fog. From days three to seven, water tastes ... different. Therefore, I make sure I have some lemons or lemon juice to flavor the water. I also get orange or cranberry juice, unsweetened chocolate-flavored almond milk and Nestea. Fluids are too important to not have whatever will encourage me to drink.

Chemo also affects digestion and bowel movements. I have to make sure I have Miralax®, a stool softener, for the first several days at least. It's a powder to mix into a drink. While it has no taste even when put into plain water, the idea of it sometimes makes it hard to get down. So, those other liquids I mentioned before come in handy for this, too.

Life in General During Chemotherapy

The main things here are to a) stay away from large crowds at least during the first 10 days of the treatment, and b) always know where the nearest toilet is.

Staying away from large crowds is a no-brainer for someone with compromised immunity. I plan my shopping for before day one or after day 10. If I must go during that time, I plan to go early in the day because there are fewer people. As far as other events with large crowds, I decide on those as they come. I don't want to hide away from fun things because of this, but I don't want to risk catching an illness that will put me into the hospital, either.

Bathroom issues are, well, an issue. Regular doesn't happen anymore. Constipation, even with stool softeners, is a real concern. So when the urge comes, it is necessary to be able to encourage it. This is especially true with the stool softeners. One never knows if the urge is for a "this needs to happen right now" situation, a "let's sit here a while to get results" one, or a "let's sit here, do nothing, and then give up and go on about our daily business and hope that the next time is the real thing" disappointing and frustrating experience. Whichever school, store, house, park or any place I happen to be, I try to know where the toilets are.

I have not talked about fatigue, because that is hard to plan for. I can start an activity having tons of energy, but after some irregular period of time, I am maxed out on what I can do. The only real preparation I can do for this is to know I can cut myself some slack when I can't do what I used to do or all that I think I should do at a given time or on a given task.

I'd like to be able to say that when the chemo is done, I'll get back to what I used to do. However, my current chemo is not curing me, it is keeping my tumors and nodules stable. I might be on this for a long time. My first blog on this site was about not wanting any more "new normals," so I guess I'll have to call this my "current normal."

(I do want to mention that new chemotherapy protocols are coming out all the time or current protocols used for other types of cancer are being tried for sarcomas. While a cure is the ultimate wish, I'm hoping there is at least one that, if it won't cure my cancer, will keep things stable and come with fewer or less side effects than the one I am on now.)


Share Your Thoughts

How has chemotherapy changed your daily routine? Did you have a strategy for coping with the changes? Share your comments below.

Thumbnail
About the Author

Amy Koch grew up in southeastern Wisconsin and, after a fair amount of traveling, living and working in other places in the United States and abroad, she has been living in Milwaukee since 2005. She has a B.A. in international studies, an M.S. in curriculum and instruction and various teaching licenses. She speaks fluent Spanish and functional Japanese. After working as a bilingual elementary school teacher in Milwaukee for eight years, she is now an instructional coach specializing in reading instruction. A lump in her left thigh in late summer/early fall of 2014 turned out to not be a "nerve or muscle problem" that just needed time and rest. She was diagnosed with liposarcoma in October 2014 and started chemotherapy in November. After chemo, neutropenia, radiation, surgery, more tumors and subsequent treatments, she thinks she is cancer free as of November 2015.

Add new comment

Amy Koch
on June 7, 2018 - 12:24 pm

Peg - Thank you! As for that special meal ... the way this fatigue is lingering, I might just have to ask you to cook a few special meals that I can keep in my freezer for the harder weeks. Sadly, for now, you can keep the wine ...

Amy Koch
on June 7, 2018 - 12:24 pm

Kim - Aw shucks! I'm glad my writing is such that people can understand. I hope there are things in this or other posts that will stick with someone and help them if they or someone they know are ever in the same situation. And, thank YOU for being the person you are! I'm glad we know each other.

Peg Grafwallner
on June 7, 2018 - 12:24 pm

Amy, once again, a home run. Thank you for sharing your experiences and how all of us may benefit from them. As always, let me know when you're ready for a special meal so I can cook it for you (wine included!)!

Kimberly Polzin
on June 7, 2018 - 12:24 pm

You write so eloquently! I think you should write a book because you are so good at explaining your experiences and how you feel emotionally and physically. I am so sorry that the chemotherapy is causing so many side effects and is not curing your cancer at this point. I love you so much. You are such a special person, friend and teacher. I am so glad that you are a Christian and have the Lord on your side. Thanks for sharing this.