A cancer diagnosis and treatment can take over your whole world. Here are a few ways to reclaim parts of your life and ease some of the emotional stress that cancer brings.
Embrace the Good Days
Last week, after feeling great for a few consecutive days, I experienced an onslaught of side effects from the current IL-2 treatment I am undergoing… chills, fever, nausea. As I lay on my parents couch, crying and waiting for the Tylenol and Zofran to kick in, my mom said to me, “Well, you were running around the city yesterday when you probably needed to rest.” My inner teenager took over and, in what was probably a harsher tone than necessary, I said. “What, should I just stay in bed when I am feeling good? I want to live my life. Besides, I don’t consider sitting on the grass at Prospect Park listening to bluegrass running around.”
The truth is, I did run around a bit. I had an appointment for blood work at my cancer clinic, after which my friend and I hopped downtown to eat xiaolongbao at my favorite place in Chinatown. Then, we jumped on a train to Brooklyn to meet up with some other close friends to take in the musical stylings of Bela Fleck and The Flecktones. Not once that day did I feel run down or appetite challenged or fevery. In fact, I didn’t feel like I had cancer at all. As much as I believe in and practice proper rest, including two hours more sleep per night than before my diagnosis, I refuse to let cancer force my life into being devoid of pleasure. When I wake up and feel great, I go do something that brings me joy. After all the shit I’ve been through, I deserve joy. I NEED it to keep the scale balanced.
Adjust Treatment Schedules to Accommodate YOUR Lifestyle
My current course of treatment required for me to be hospitalized for two separate weeks this summer, two to three weeks apart. I was told that I would probably be feeling mostly fine during the weeks when I was not in the hospital. The start date for my first week of hospitalization was scheduled according to the protocol of the clinical trial. The second hospitalization was scheduled three weeks later because my oncologist would be on vacation until then. The week I was due for my second stint as an inpatient was a little tricky, as my oncologist wouldn’t be returning until midweek, meaning she would have to find a protocol-appropriate attending to round on me on the days when she would still be out of town. “Well,” my doctor said, “the trial does allow for us to push it back one more week, when I’ll be here.” The week she was referring to was the week that I had planned to housesit at my favorite happy place by the beach, have a close friend visiting from out of town, includes my birthday and an annual family gathering. I looked my oncologist in the eye and said, “I’m sorry, but that week I am not available for cancer. Please do everything in your power to make the previous week work.” And she did.
And so it is that I am writing this blog post from aforementioned happy place, with my inpatient week behind me and am able to fully enjoy my birthday week and all it has to offer. I still have to run into the city for an outpatient follow-up appointment one day, but that’s perfectly acceptable to me. Many people with cancer are afraid to delay or postpone treatments, or they are unaware that they are even able to do so. Yes, there are times when aggressive disease doesn’t allow time for delay. And sometimes treatment protocols are inflexible, but often they are adaptable. Because of the nature of my disease, I have been and probably will remain in ongoing treatment. One of the things I try to always do is have my oncology team print out a treatment schedule for several months in advance, so that I can plan around it. But when fun or important life events are in my calendar, I ask them to please adjust the treatment schedule to accommodate those plans. When you have late-stage cancer, those life events become all the more precious. Most doctors are aware of that, and will work around your schedule when they are able to.
Be Assertive About Your Communication Needs
Before my two hospitalizations this summer, I respectfully asked my friends and family members to “back off” when I was in the hospital. I would be undergoing a pretty intense treatment regimen, and I wanted the hours in between being poked and prodded to focus on writing, reading and catching up on Netflix shows, not answering text and Facebook messages asking how I felt. The moment I was released from the hospital, the questions commenced. I get it. So many people are genuinely concerned about my wellbeing… it’s a good problem to have. The way that I have personally dealt with this good problem is by maintaining a regular blog, detailing the medical logistics and emotional impact that come attached to my cancer diagnosis. Still, people close to me are inclined to ask how I’m doing, how treatment is going, as they should. OR, they avoid broaching the subject because they feel guilty about forcing me to talk about it. The thing is, loved ones and caregivers NEED for us cancer patients to give them some direction in terms of how and when it is appropriate to discuss our diseases. When someone asks, I do one of two things. I engage in the conversation, because at that moment I am ok with talking about it, or I simply say, “I don’t want to talk about cancer right now.” And 99 percent of the time, people respect that and move on to a question about my Game of Thrones theories or upcoming plans. For those who avoid the C word, if I need to talk about it, I just talk about it, and they talk through whatever I need to talk through with me, usually with a sense of relief that I am the one who brought it up. And I’ve always been very clear with my people that they, too, are allowed to say, “I don’t feel like talking about cancer right now.”