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Kim Johnson discusses making better choices in the face of the unknown after cancer.
As we approach the one-year anniversary of my sister’s remission, there are many emotions associated with this milestone for me. Since people often ask, I’ve been trying to come up with the right words to explain how I feel. I'm elated that she's been in remission for so long. I'm surprised because for the longest time, nobody thought it possible. I'm filled with gratitude to all who have helped us get to this place. I'm happy that she has defied all the odds. With that being said, I'm also filled with anxiety, nervousness and anticipation.
From the beginning, you learn that cancer is the biggest waiting game. Wait on doctors. Wait for tests. Wait for exams. Wait for blood results. Wait to see if treatments are working. Wait to see if the cancer is growing. Wait to see if she will have a reaction. And with that waiting, questions ruminate in your head. Without answers to those questions, the anticipation of so many unknowns can become incredibly consuming.
During her period of active cancer, all I could do was think about what was to come next. For every exam, it seemed the journey needed to be rerouted. So, for me, thinking of all the options and outcomes meant that no matter what we learned, nothing could surprise me. More often than not, that logic proved to be false. Unfortunately, it did not curb that thought process in my head. If anything, it made it far worse. After we would get answers, I would add the result to the long list already in my head, and the cycle would begin with the start of the next waiting game.
Immediately following her bone marrow transplant, not much changed. But thankfully since her remission, cancer has slowly faded to a much smaller role in our lives. She sees her primary oncologist monthly for a checkup and labs, and her secondary oncologist every three months. There are still times when cancer reminds us how invasive and disruptive it can be. Like late last fall when her neuropathy flared up and she ended up in a short-term rehabilitation facility. It is in those moments that my anxiety is highest because it is a reminder that although cancer-free, many of the side effects still remain.
As time has passed, I’ve begun to work on controlling what I can about those situations. For example, in early February, we'll spend the day at Presbyterian St. Luke’s and she will undergo a battery of tests. It will include her first scan in quite some time. While it isn’t expected for her to have relapsed, we have been through this enough times to know that nothing is a guarantee. So, as we gear up for another round of the waiting game, I am doing my best to not let the wait and worry overtake me like it so often has.
I’d be lying if I said I wasn’t nervous and filled with anxiety over these coming results. I think about what a relapse would mean. What, if any, treatment options would be available to her? How would my family get through after we struggled so mightily last time? How will she do both physically and emotionally? How will I do? What will I do?
So as we once again face the unknown, I am making the choice to focus on what I can control and to try and leave the rest. I know that the initial choice to transplant was right because it has given her more time than she otherwise would have had. To remind myself that cancer lost once, so we can win again. That no matter what, we are a family. Sick or healthy, she will always be my sister. While I may be stuck waiting for these new results, I will not be playing the waiting game. Because good or bad, the one thing I do get to choose is how I spend my time. So I will spend the time thinking about how far we have come. All those who have walked this path with us. How lucky we are to be celebrating one year in remission.