The In-Between

by Brooke BarnesPatient, Chronic Myeloid LeukemiaOctober 12, 2020View more posts from Brooke Barnes

A normal day for me includes waking up and, if I’m feeling especially on top of things, an hour before I need to so I can get in a workout, shower, eat breakfast, do my hair and makeup, get dressed, find the perfect pair of shoes and head to work. At work I talk to a zillion people, make some decisions, send some emails and have some meetings. Then I go home, cross my fingers I cooked something over the weekend to eat all week so I don’t have to get fast food…again. If it’s a Thursday I might be headed to a dance class or, if not, probably sneaking in some house work before it’s time for bed so I can get up and do it all over again. I have a great job that I don’t hate, have lovely coworkers and am challenged 100% of the time. On paper, I am living the workaholic millennials dream. But I am living in the in-between and I suspect some of you might be living there too.

My cancer journey began 3 years ago when I had waited so long to get my symptoms checked out that my spleen was the size of a football and my white blood cell count was through the roof. They immediately assumed it was Leukemia and I was sent from the ER in an ambulance to the hospital where I was diagnosed with Chronic Myeloid Leukemia. I was one of those people informed that it was the “good” kind. 2 weeks in the hospital and I was sent on my merry way with a magical targeted therapy that would keep my cancer in check. All I have to do is take a pill every day for the rest of my life and I get the gift of most likely having a normal life expectancy. To someone who’s never had cancer, this truly does sound magical. But I’m thinking those of you who need maintenance treatments or immunotherapy or any kind of indefinitely ongoing or long-term treatments may understand, the mental struggle is real.

You see the kicker of having my kind of chronic cancer is that the targeted therapy isn’t a cure. There is no such thing as remission. Although there are cessation trials that prove some people can discontinue the medication at some point, it’s not a real option yet. This means that every day, likely for the rest of my existence, I have to make a conscious decision to take a medication that actually makes me feel slightly sick. I am reminded every day when I take that pill that for whatever reason, my body is actively trying to destroy itself, and without that pill I would not be alive. So, I live in the in-between.

I live between my normal everyday life of trying to stay in shape and be a #girlboss but also researching to see if there is any new long-term research on the effect of tyrosine kinase inhibitors on the female reproductive system. I’m trying to focus on my career and plan a life when in the very back of my mind I’m still actually concerned that my disease will mutate and the magic pills will stop working and then what?

This is the in-between. In between life during cancer and life after cancer. In between wanting to move on and forget that this terrible thing ever happened to you, but still needing to process that it did. In between planning for the future but dealing with the what ifs, not matter how remote they may be, that there might not be a future to plan for. If this horrible unexpected thing happened to me once, who’s to say it won’t happen again? But this is the in-between so you can’t linger on that thought for too long. After all you’re out of the hospital and you look like you’re back to normal so you better start acting like it. Or at least that’s what I feel like people are thinking.

The in-between is a tough spot to live. I wonder if after a while the lines dividing life pre-cancer and post-cancer blur enough that it doesn’t feel like a transition anymore. I definitely can feel a shift, looking more towards the future than I did even a year ago. I guess if it doesn’t feel like life before or after anything, it just becomes life, and that’s the feeling I’m looking forward to having again.

This article was in our March 2020 Magazine – Click Here to view that issue!


All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.

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