Banging against the screen

Thank you for all your prayers, positive thoughts, emails, cards, visits….everything is so helpful and even though I cannot always respond, the energy you send makes a huge difference. We all appreciate it.

Chemo last time around was….normal! Three days doing chemo in bed, followed by 2-3 days of recovery. In my abdomen, I’m feeling more tension than before, likely caused by the tumors pulling on various body parts, but my psyche is strong and my energy is rebounding.

Lately, it feels like chemo is the most consistent event in my life and everything else is structured around it. That doesn’t feel very good. For example, I close my eyes and I see rooms at Dana Farber. My frame of reference for many things I read or consider have to do with my chemo experience.

I don’t want that. I want my references in life to be more about family and friends and what is gong on in this world. In addition, I now live my life mostly inside my house (or at Dana Farber). I have slowly become a recluse. How did I get to this point? What can I do?

It is easy to say, “Just get out,” and at one point in my life, that is what I would have said. But that is way easier said than done. It has only recently been warm enough to go outside without a lot of preparation (which in itself wipes me out). But now it is warm enough to step outside without layers and with knowing that I can sit somewhere if I get tired. (I can’t do that when it is cold, rainy or snowy.) So I got used to being inside.

Now, when I do go out, it is usually to drive one of the boys somewhere, and then I make a beeline home. A simple errand, like going to Target or dropping off a package at UPS, is overwhelming. The thought of going someplace where I actually have to get ready in advance (like, going out to dinner or a party) exhausts me, because I know that just getting ready usually saps all my energy and then I have to cancel attending the actual event. I haven’t been to the grocery store (or any store) in months, as I worry about having enough energy to make it through. I haven’t been able to go to church in forever, and the last time I was there, I couldn’t sit through a full Mass. I didn’t like that this was my life and I didn’t know what to do.

However, I love that when you put a question out to the universe, you get an answer. I belong to a colorectal cancer survivor Facebook page, and someone mentioned they felt like a shut-in and posed the question of whether this is normal!

Responses flooded in. Normally extroverted people wrote that they could not, and didn’t want to, drag themselves out of the house. Many people actively avoid seeing others, and when do go out, they dread running into people. People stayed home because they are worried about their stamina, their comfort, and their need to be close to a bathroom. My experience isn’t unusual at all.

What to do? I don’t know. But the following sticks with me:

The other day, a bee was in our house, banging against a screen trying to get out. It tried several different places on the screen with the same result.

I couldn’t move the screen to let it out the window, but that window was next to a door. I could open the door to help it fly away.

But the bee wouldn’t be coaxed off the screen, much less toward the door. It repeatedly tried to break through the screen, bouncing back each time. I tried to shoo it and encourage it to fly just a little backwards so that it would find the open door to freedom, to no avail.

I need to do that myself. I need to take a step back and see if there is another option for how to “be” with this whole experience. If there is another option for getting through chemo so that my energy is better. If there is another option for the focus on chemo in my life. If there is another way to live my life when I am NOT attached to chemo or its after-effects.

In the meantime, we FINALLY have warm weather here in the Northeastern U.S. and I’m doing my best to sit outside when I can. I had a birthday recently and was truly amazed to make it another year. (Back in March and April, I wasn’t quite sure of that.) I love seeing friends. The kids are doing well and my husband is amazing. So focusing on all that.

I hope that you have a really wonderful holiday weekend, filled with anything and everything you love, and that if you feel like you are hitting the screen in any part of your life, know that there is an open door waiting for you.

Love and blessings,

Marie