Sounds like a subject philosophers could debate for a long time. What is normal?
When we were in New York recently my son-in-law asked me how I felt. I said fine, I guess; but what I really want to feel is normal again. By that I meant how I used to feel before chemo.
Before chemo I could wake up in the morning and jump out of bed, get my shower, start breakfast, make the bed and begin my day without hesitation or pause. I could eat whatever I wanted without a care (other than worrying about fat content or calories or sugar). I could get up early and go to a meeting, walk to and from appointments and shopping trips, pick up last minute and go do whatever – dinner, movie, a concert, even stay up until midnight, one o’clock. Doing all this and feeling - well, good. We didn’t hesitate to plan trips and go when we got the urge.
During my first course of treatment, I had to be at the infusion center every week for three weeks, then had one week off, so things had to be planned around this – very doable. Other than one day of minor nausea and tiredness, the chemo didn’t debilitate me that much. I could even walk to and from the infusion center in all weather. We did take a trip or two when I could arrange it around a break in treatment – and twice actually took a week off of treatment. There was some neuropathy which was not debilitating, and for the most part, things hummed along.
Then I started the new chemo regiment which meant going to the infusion center once every three week, but taking chemo pills for 14 days, leaving one week to “recover” before the next trouncing. This chemo inhibited my ability to walk as much as I used to including using the treadmill at the gym. I was constantly tired, so tired that just the thought of going to the gym seemed like a major hurdle. It takes me many minutes to actually get out of bed and over an hour to get dressed. I rarely utter a word to Thierry for the first hour or so after I get up. Often I have to sit to deal with the regular morning headaches that sear through the right side of my head and neck.
My diet changed dramatically because my mouth became so sensitive, including the onset of mouth sores which I never had to deal with before. I am usually in bed by 10:00 and rarely get up before 7:30. I don’t like to make plans in advance anymore because I am not sure how I will feel – although we do have reservations for a stay in upstate NY in February (I am so determined to go). I still managed to work but timed meetings carefully to ensure I’d be physically able to make the meeting.
So as I began to accept this new normal and adapt, I learned last week that the chemo is not working. My substitute oncologist (who I like) is looking for an alternative chemo to start either this week or next.
I guess what I am learning from all of this is that feeling normal is relative… It’s just how you adapt to how you feel and decide that you can still live and enjoy life, within its limitations. But I still miss those nights of drinking and laughing until 1:00 in the morning!
Back in Baltimore
10 years ago
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