[Part Three of a Series. I was writing to a friend of mine the other day talking about some of the side effects of chemo and all of the things I was doing to try to head them off. And then it occurred to me: I have been doing an absurd amount of work to keep myself healthy and to stave off any side effects from the treatment. And maybe some of you would like to know what a day in the life of a cancer patient might look like.
Note: This is no way intended to be a recommendation for other cancer patients - each person is given their own treatment plan specifically crafted for them by their medical team.]
The subject of “well being” is such a hot topic with cancer patients, because it’s that elusive, unspoken essence to health and yet everyone has a very strong opinion about how it should be managed. It’s the first thing that draws empathy from people (yay!), and thus is the first thing people offer up as advice (yay?)
I start my day at a leisurely pace in front of the computer, browsing social media and glancing over emails, where I’m greeted with all kinds of love and support: “How are you feeling?” “How is your energy?” “How are you able to do it all?” They’re compassionate and loving questions, but when you get asked them all the time it can become a bit of a strain. I want to answer people with an authentic, personalized response but I just find myself saying the same thing over and over again - “I feel fine, considering...” “I’m working very hard to stay well...” “It’s hard but I’m just taking it one day at a time...” So please forgive what might seem like a canned response - I really do try to give every reply careful consideration. :)
What makes things easier is when someone asks specific questions, because it helps me focus on a succinct answer instead of searching through the vast array of experiences I’ve been having. This could be something like, “What would you like to share with me?” or “What can I help you with right now?” (If we’re close, I appreciate things like, “What has been hardest for you to deal with?” or “What can I take off your hands?”) Even adding the word “today” to the question “How are you feeling” as in, “How are you feeling today?” makes things easier.
I also spend a great deal of time making sure that I am thanking people for their gifts and well wishes - and I’m lucky to say that I have some very generous friends so it’s hard to keep up. If you haven’t heard from me yet, rest assured that a person response IS coming.
Another question I field a lot (and there’s no complaint here) is: “When can I see you?” I’ve felt really bad that I cannot see people as often as I’d like. I would love to meet up with all of you, but between trying to rest and take care of my body AND somehow manage to keep my businesses afloat, I’ve found that I have less time for visitors than I expected. This is another area for which I ask for your patience.
So... how IS this affecting my work?
Thanks to the amazing donations that have been coming in, I have been able to cover my expenses and be able to take 2 more days off per week to make sure I’m not overdoing things. I’m still working 3 days a week as a career coach, and multiple days running my theater company, so I balance those work hours based on the amount of energy I have. I’ve had a pretty good handle on the first 4 chemo cycles (Adriamycin and Cyclophosphamide, or AC, for those of you who want to look up the particulars.) I’ve just switched to a new regimen - 12 weekly treatments of Taxol (T). It’s pretty unnerving to have to figure out what my new normal is...again. As soon as I’ve been through 1-2 cycles of this new drug I’ll have a sense of my energy and change my schedule accordingly.
How else am I keeping my spirits afloat?
I unwind with a lot of Netflix, Hulu, HBO & Showtime. My friend Paula gave me a coloring book and ink pens to keep my creative juices flowing. I see friends and family when I can. And being able to focus my attention on making art has made a huge difference for me. (Check out this blog about my upcoming gig.)
As always, thank you for your support. If you're looking for ways to help, you can check out this blog post with my wish list, which is making all the difference in the world.
My treatment regimen:
4 bi-weekly cycles of dose-dense Adriamycin and Cyclophosphamide (AC), to be completed October 6, 2015.
12 weekly cycles of Taxol (T), to be started October 20 and completed in January 2016.
30 sessions of radiation over the course of 6 weeks - that’s 5 days a week for 6 weeks, to be started in January 2016 and completed by March 2016.