For three-and-a-half years, my cancer was stable.
My current treatment was successful in making sure it did not change or grow. I linked it to when a toddler has completely demolished the living room with toys and energy. Then it’s time for his nap. You clean up the mess, then settle in with a good cup of tea. That time with a cup of tea is like enjoying cancer’s stability. Except sooner or later, the toddler awakens. And recently, so did my cancer.
I knew it was coming. I have the kind of cancer that doesn’t go into remission; there is no cure (yet). I have Alk-positive non-small cell (non-smoker) lung cancer. The “ALK positive” means my biomarker tests came back positive for a gene (ALK) that is driving the cancer. Treatments therefore target this gene. If I had to get cancer, I always say how lucky I am to have Alk+ NSCLC. That’s because it means I get to belong to ALKpositive.org. We are a small but mighty group of fighters, caregivers and ALK specialists. We have our own board, complete with a CEO and different committees. We raise funds for our own research, therefore working hand-in-hand with the researchers that are working on our cure. In return, these researchers graciously give us “ALK talks” to teach us about our cancer, different (and newest) treatments and various clinical trials. We also have groups within our group to help build connections among us – an art club, yoga, a writing club, a book club (etc). It is not an exaggeration to say that this group literally prolongs our lives.
In the past three years, with the help of ALKpositive.org, I have been preparing my arsenal for the day my sleeping cancer wakens. I have learned all I could about ALK+ cancer. ALKpositive.org also pays members for second opinions. Because of that, I have an ALK oncologist on my team from Massachusetts General Hospital. In fact, she was the one who discovered my progression, during a routing scan of my scans. She immediately invited me to a consultation which included her, an intervention radiologist, and a radiologist. The latter two only work with lung cancer patients, at a world-class hospital. I was clearly in the best of hands.
I am still mulling over the recommendations from this meeting. I am reaching out to my local oncology team and gathering data. I know the right decision will come. And with the help of my fellow ALK fighters, my growing band of cheerleaders, and my two oncology teams, we will put this cancer back to bed.
I have felt big feelings in the past two weeks. I’ve been sad. I’ve been scared. I am determined not to die. Now my major hope is that whatever method I choose will not affect my quality of life. Everyone has their peaks, and everyone has their valleys. Cancer fighters just have really big ones. I am ready for whatever comes.
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