In the days after I finished radiation therapy in 2002, I often found myself crying for no apparent reason. Or for little, meaningless reasons. Really, I think I was crying for a lot of deeper reasons: frustration with the pain, anger that I had to go through treatment at all, relief that treatment was over, and fear that the treatment had not worked. I remember going to my sister’s home for the holidays that year, and being very emotional the whole time we were there. This emotional volatility would come and go for a while.
Fortunately, the blisters from radiation eventually crusted over, became less painful, and started to heal. I also became less raw emotionally, although I continued to struggle with fear of recurrence. The radiation burn on my breast eventually faded, but I continued to have pain in my breast at the tumor site. Pain that my radiation oncologist simply said that I shouldn’t be having. When sufficient time had passed, my breast surgeon prescribed my first post-treatment mammogram.
This mammogram did two things: it confirmed the cancer was gone, and it showed that one of my lymph nodes near the tumor site was swollen. There was a small chance that it could be cancer cells, but it could also be an infection. My breast surgeon did an in-office needle aspiration – drawing the fluid out – of that lymph node to test it for infection, and in the meantime put me on a general antibiotic. By the time the test results on that lymph node were back, and confirmed it was an infection in the tumor site, the antibiotic was already working and the pain I had been feeling for months was finally gone. However, in the days between the aspiration and getting the results, I struggled with the fear that the cancer was still there.
That experience, even though everything turned out fine, was just the first of many false alarms that MG and I went through after my first diagnosis. That is the life of someone who has been treated for breast cancer, or any cancer. Anything that looks remotely related to your cancer, even if it was early-stage and successfully treated, means extra tests and holding your breath until you get the “all clear” yet again. Many survivors experience a similarly stressful reaction to regular follow-up exams, like annual mammograms. And no matter how many times the doctors tell you that you are fine, you may still react with some degree of fear. I think this is normal for anyone who has been through cancer or any potentially terminal illness that can come back after treatment.
I want to make a distinction here between that kind of fear, the fear that arises in response to having some kind of medical test done, or some kind of temporary health concern, and the kind of fear that I often struggled with during the five years following my first breast cancer. And I want to make this distinction because I feel like I often lived my life in a state of fear: unnecessary, time-wasting, life-draining fear. I call it unnecessary fear, because if you remember my initial diagnosis, it was Stage Zero, non-invasive, ductal carcinoma in situ. Which is a particular cancer that can’t come back (or recur) because it had never escaped its original location in the duct. So, the chance of getting anything other than more DCIS elsewhere in my breasts was pretty small. Now, at several points along the way in this diagnosis journey, MG and I were told that the odds were in my favor, that the chance of a negative outcome for a particular test were very low; and every time, we got the result that the odds said we would not get. So, even though the chance of my DCIS coming back was low, I just couldn’t shake the belief that it would somehow come back.
It would not be an exaggeration to say that I lived a lot of the five years following my DCIS treatment in a state of fear about something that would probably not happen. And I regret that choice. Because I do believe it was a choice, a choice that I made on a regular basis. I listened to my fear and I let it control my life. I think I believed that if I was vigilant about the return of the cancer (if I let the fear run my life), then it wouldn’t surprise me when it came back. Somehow I would be ready, or something.
I hope that as you read that last paragraph it seemed irrational to you; because it was irrational. There is no way to prepare yourself for the return of your cancer. Just as there is no way for your doctors to predict if your specific cancer will return, or when it will return, or in what part of your body. Therefore, living five years of my life in a state of anticipatory fear of my cancer coming back was a waste of time and emotional energy, and I’m pretty sure that this daily choice may have had the cumulative effect of keeping my body in a state of constant stress, therefore leaving me more vulnerable to developing a new cancer.
It is precisely because I spent so much of those five years choosing to live in fear, that when I ended up being diagnosed with a new breast cancer at the end of those five years, I immediately felt responsible for bringing that new cancer on myself. Now, do I believe that if I had not lived in fear I would never have developed the new cancer? No, I don’t believe that. I believe that my breasts grew cancerous tissue, which was fueled by estrogen, and that I would eventually have gotten cancer again. Would I have gotten it so soon? I don’t know. But I do know that I would have had a richer, more enjoyable life during those five years if I had not chosen to live in fear.
The reason I write about this fear is that I am hoping to help you avoid making the same mistake. There is no logic or sense to living life being afraid of illness or death. It’s not that I don’t still have my moments, days, or even weeks where I struggle with my fear of recurrence and death; of course I am sometimes afraid. But between those brief periods of being afraid, I choose to not be afraid. And I am not just choosing to not be afraid of the cancer, which gives me more freedom to feel joyful and happy and at peace; I have chosen to let other fears go as well, fears that always held me back from doing things I wanted to do.
For instance, I chose to give up my fear of riding in boats. This fear used to mean we couldn’t go on adventures like whale watches or ferry rides, which MG really enjoyed, as she loves boats and the water. Since treatment for my second breast cancer, I have been on whale watches off of the coast of Maine and Cape Cod, in the Bay of Fundy in Nova Scotia, and I have taken lake cruises and ferry rides, including an overnight cruise from Portland, Maine to Yarmouth, Nova Scotia. I no longer suffer from seasickness on boats. I also gave up my fear of heights, which allows me to be more adventurous. MG has often said she misses my fear of heights, particularly when I am standing on the edge of a canyon or a cliff, which I would have been too afraid to approach in the past. Don’t misunderstand me; I have not become reckless. I don’t go skydiving or enjoy crazy carnival rides, although I do enjoy a good Ferris wheel ride. I am no longer afraid of walking across the Brooklyn Bridge, or of hiking up a mountainside in the Adirondacks. I also decided that I was tired of being afraid to ride horses, something I had always wanted to do, but which always made me fearful. So I spent a couple of years taking riding lessens, and went horseback riding in Ireland, in Hawaii, and in the Adirondack Mountains.
Do I wish that I could have lived those five years between cancers differently? That would be a waste of time, and I am done wasting my time. In AA, we talk about not regretting the past nor wishing to shut the door on it, and seeing how our experience can benefit others. I hope that reading about the lessons I have learned about my fears will help you spend less of your time living in your own fears.
