I Am Sad and Scared All the Time

It’s funny, the things we think we know about chemo, because that’s how it is in the movies, or your great-grandmother had it and you watched her waste away, but no one would talk about it. I threw up a lot. I knew that would happen. But no one told me that certain smells would make me sick. I had diarrhea all the time. Still do. No one told me that I would develop canker sores all over the inside of my mouth, or that my finger and toenails would become infected. I had no idea I would lose my sense of taste. It has never been the same, and that is really a shame because I really do love to eat. I knew I would lose my hair, but it never occurred to me that I would lose ALL of it. That’s right. ALL. OF. IT. I only focused on the hair on my head.

Nausea from chemo

While I was throwing up and could barely crawl out of bed, I missed a lot of work. In the beginning, it was not good, and even today, I’m not sure what I was expected to do. I was exhausted all the time. I couldn’t drive, I started forgetting things. Doc’s appointments, teachers on the extra-pay sheet; my head felt like it was stuffed with cotton candy.

Lymphedema

Quite a lot of that has eased, except for the lymphedema. It is frustrating trying to manage it. If I don’t keep it wrapped, it hurts and puffs up looking like a big, brown sausage. From the time I unwrap and shower, the thing is twice the size. I purchase new compression bandages and a sleeve twice a year, which insurance will not cover. There is only one lymphedema therapist in town, and she’s amazing. When my arm becomes unmanageable, I get a prescription for PT.

Additional side effects

I’ve developed osteoporosis and cardiomyopathy as a result of all the drugs I’ve taken for the last twenty years. Those two side effects scare me the most. Often, my feelings are raw as I navigate these side effects alone. It wasn’t always that way, but I think it is assumed that I exaggerate how I’m feeling, especially after I’ve worked all day. I’m sad and scared all the time. Imagine my joy when I stumbled onto this site. I could finally be how I am instead of always “acting as if” to protect others. I appreciate all of you!

What metastatic breast cancer side effects are the most difficult for you to manage?