Learning to Accept My Weaknesses

Recently I've had to acknowledge my body and mind are not as good as they used to be, even three months ago. In early August I was on vacation in Maine, walking around a small island, climbing over rocks and downed trees, enjoying life. I didn't know that three weeks later, on September 1, I'd be diagnosed with metastatic cancer - meaning the cancer cells had moved from the original location to elsewhere. For me, it was in my lungs and abdomen. 

Since then I've undergone radiation therapy on a specific lung nodule that was crowding my heart, and have gone back into chemotherapy. 

The new chemo regimen is tougher on me than the one I did last year. It's changed me in ways that I don't like.

I've gone through two rounds of it, and the second round was harder on my body than the first. The first one, I received the 24-hour infusion bag on a Thursday, had it removed on Friday, then was down for the count on Saturday and Sunday. I went back to my job on Monday and worked through Wednesday, my usual schedule 

The second round started off the same, but Monday morning I called my job and said I wouldn't be in. I still felt weak and shaky. They called in the afternoon and asked if I could work in the evening and I said yes, I thought I'd be ok by 6 pm. I went to work and that was a mistake. I was so tired. Too tired. When I got off at 11 pm I was worried about driving home safely, even though I live less than a mile away. I got home, took off my clothes, and went straight to bed. My husband was brushing his teeth and asked if I was going to brush mine, and I said no. I just lay there and fell asleep quickly. 

Tuesday I went to work at my normal time, 12:30 pm, but left at 6:30 pm, and on Wednesday I didn't even make it that long, going home at 4 pm. I was just so tired, and my muscles didn't want to hold me up. I wasn't eating much - and vomiting up some of what I did manage to get down. I lived on chicken & rice soup, and protein shakes. Even cough syrup made me puke a little. My gag reflex seemed hypersensitive. 

My days off are Thursday, Friday and Saturday. Thursday I was still tired and a bit weak. Friday, a whole week after infusion, I began to feel better. And today, Saturday, I actually wanted to eat real food for the first time in a week.Veggie pizza at lunch, and a turkey burger for dinner, without the bread. I've been drinking tea all week instead of coffee, not wanting to have that acid in my stomach. I think I'll stick with the tea a few more days. 

What I've learned this week, and from talking with some doctors, is that I have to recognize the damage that's been done to my body and be kind to myself. Not expect too much. Listen to the aches and pains and fatigue, and respect what they're telling me. 

I understand the physical weakness, but the cognitive changes I'm having more trouble accepting. Since starting the trabectedin, I know my mind isn't as sharp as it used to be. Words don't come as early to me. This morning at the farmers' market I saw a distinctive gray dog and I couldn't remember the breed. Weimaraner. Took me almost a half hour to come up with that word. I'm usually good at just recognizing and naming the breed on the spot. 

 

And admiring leaves and flowers - previously I was often captured by the intricateness of a rosebud unfolding, or the veins in a leaf, or the changing colors in autumn. This year, that interest has faded. I no longer stop to peer closely into the opening petals of the little pink roses that surround the parking lot at work. 

Other similar instances of slowness have been occurring and it really bothers me. All my life I've considered myself to be fairly intelligent, and it seems as if I'm dropping IQ points rapidly. My mind used to be active all the time - sometimes too active, with ideas and concepts swirling around and competing with each other - and now, it seems as if I have empty spaces in there. One thing stood out to me the other day - I sat and watched a tv show I wasn't really that interested in, without doing something else too. I wasn't reading email, or checking different forums, or just browsing the internet - I just sat there and watched it. That's very odd for me. And somewhat disturbing.

I don't know if I'll get my physical or mental strength back completely. And I don't know what else is in store for me, after my third infusion of trabectedin. Possibly more chemo, maybe more palliative radiation to reduce the size of remaining tumors. 

I'm considering when is the appropriate time to go on disability - my oncologist encouraged me to do it months ago - but it's not a simple decision. I have to consider the financial impact on my family. On long-term disability through my job, I'll receive health insurance for one year, but after that, I'll have to get it through COBRA or private companies. Those options are insanely expensive - and my income will be much less - so figuring this out is tricky. My husband is on my insurance plan too. If I don't live past a year, then we're still covered. If I survive longer, then it's a financial hit. 

So I'm learning to accept my weaknesses, but still trying to outrun them. I'm just not ready to call it quits yet.