Tuesday, February 15, 2011
Life with cancer is hard.
I've been thinking about that a lot lately. Although the shock has worn off and we're somewhat used to our new routine, life isn't getting easier. I've been encouraged to talk about this more and at first I wasn't sure I wanted to. Two recent conversations led me to think it might be helpful for everyone (including me) to have an honest discussion about the reality of our life.
My friend Caroline took me to treatment a couple weeks ago and the nurse asked about my nails. I told her they were painful and ugly. I didn't think twice about it but the first thing Caroline said when we left was, "I didn't know about your nails". My reply was something like, "It's just one of the many annoying side effects from chemo. If I talked about all of them, you'd be bored silly." She didn't see it that way and wanted to know more.
I also had a conversation with Mary. She mentioned that sometimes she asks me how I'm doing and I change the subject. I had no idea I did that! I think of myself as an open book, willing to answer any question. But I'm also careful not to talk about myself too much. I don't want anyone to get tired of hearing the same complaints and I also want to present myself as the perfect cancer patient, whoever that is. And really -- do you want to be reminded that even though my emotions are more manageable, I still have many fears and sometimes start to cry when I look into Olivia's eyes? Or just because I pull myself together and don't look sick, I still struggle physically every day? In my mind, you're looking to me for strength and reassurance. If I'm presenting myself in a positive way, then you'll feel that way, too. However, this does get tiring and I sometimes find myself saying, "They just don't understand'. I realize that people won't understand if I don't tell them what's going on, so I'm going to start with, "Ricci's Chemo Side Effects 101".
I'll address this in two parts. First, I'll talk about the side effects I deal with everyday. Next time I'll focus on what a typical treatment week looks like as well as the profound effect my chemo schedule has had on our family.
I'll start from the top (literally):
HAIR: You all know I wear a wig and have lost most of my eyelashes and eyebrows. It takes some make-up magic just for me to look "normal". And as easy as it is to wear a wig, I'm getting tired of it. I try not to think about it too much because it will take time for my hair to start growing after I stop chemo (the next step won't involve hair loss) and even more time for it to be long enough to go out without a wig.
By the way, I'm on look number 4 -- another lesson is that wigs don't last forever!
You might be surprised to learn that I've also lost most of my nose hair. That means I don't have much of a filter. To compensate for that, my nose runs ALL THE TIME and I sneeze frequently. That got old fast.
EYES: My eyes water a lot and I've had vision changes that aren't completely corrected by my glasses (that should go away once I stop chemo).
NOSE: I have sores in my nose which sometimes bleed and occasionally make it hard to breathe.
TASTE: Many foods don't taste the same. Some foods taste bland, others are too sweet or salty. The only time it bothers me is when I've been craving something and it's just not the same, or sometimes not good at all.
NAILS: My nails are discolored and painful. I've been lucky not to lose my nails but they're extremely sensitive.
FINGERS: I often drop things because the tips of my fingers are numb or tingly (mugs, frames and assorted household goods have been broken over the last few months). My toes are affected, too, especially at night. Some patients have to stop this particular treatment because this side effect (neuropathy) is so severe. I'm "lucky" to be tolerating the treatments as well as I am.
PORT-A-CATH (where the chemo is infused): My port drives me crazy. I don't always notice it but the skin around it is pink and it sometimes itches from the inside. There are days I want to yank it out but of course I can't. As long as it's not infected, it's the safest and most effective way to receive chemo. It's possible I'll have it the rest of my life, so I'm trying to find ways to make it more comfortable.
BACK/NECK: My back and neck are very stiff and some movements are difficult (getting in and out of the car, looking at something behind me) and there are times when I”m quite uncomfortable.
DIGESTION: I have various digestive issues, including reflux
HORMONES: My chemo is hormone based and has basically put me in to menopause, hot flashes and all. This is annoying but I'm dealing with it. It was going to happen at some point, right? The hormones and pre-treatment steroids (which help with nausea) also affect my mood.
CHEMO BRAIN: And then there's "chemo brain". It snuck up on me and it's one of the most frustrating things I'm dealing with. I often have word finding problems and once in a while I can't put a sentence together properly. I also have trouble focusing and following through on things. It's more important than ever that we're organized and it's getting harder for me to plan and think ahead because my brain is so muddled. This is also related to my fatigue, which I'll address more next time.
To be continued.....
