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A few weeks ago, my husband and I were in the car while we were having dinner to celebrate our seventh wedding anniversary. We made jokes about staying so long and amazed at everything that had happened since our wedding day and what could change in another seven years – how old we would be, how our son would grow up, where we would be would live.
"I hope I'm going to stay that long," I said casually. My husband stopped cold.
"What do you mean by that?" He asked, clearly surprised. "Do you think we are going to divorce right now?"
"No, of course not," I laughed, really surprised that he misunderstood me. "I just hope I did not die by here."
Once again, he was silent. Then he asked, "Do you think of death all the time?"
I thought for a minute and then answered, "Yes. Yes of course."
When I was diagnosed with stage 2 breast cancer two years ago, at age 37, I felt strangely lucky. Of course, cancer is a terrible hand to treat, but I found it early. And it was positive for hormone receptors, which meant that it was more likely to respond favorably to treatment and that there would be more available treatment options. I was terrified, but I also felt wrapped up in the cocoon of the cancer treatment process – oncologists, surgeons and nurses constantly kept me busy and assured me that everything would be fine.
Once the treatment started – months of chemotherapy followed by a double mastectomy – I fell into survival mode, trying to survive the infusion of the day, the side effects of the next day, the post-operative recovery and, finally, the disease itself. Although the treatment remains difficult and frightening, it also gives rise to a strange feeling of comfort. There is a predictable routine of appointments, blood tests, check-in, check-out. You are aiming for a measurable goal. You have a goal and a plan, and you really have to take things one day at a time.
After my mastectomy, I had the fantastic news that my pathology report was clear: I had a complete answer to chemotherapy and there was no more cancer in the breast tissue or in my lymph nodes. Cue the total relief.
But in the weeks and months that followed this optimal result, I felt lost.
In the perky pink world of breast cancer awareness, survivors are described as these smiling and carefree archetypes. They survived! They are winners! And they are really very happy!
The reality is not so brilliant. Physically, my body was messy. My reconstructed breasts were misshapen and almost completely numb by my mastectomy. (Let me put an end to the misconception that reconstructive surgery appears to work in the breasts.) My hair was growing back, but the chemo made it come back super curly and tough to manage. Chemotherapy also powered me into early menopause, which gained momentum after my ovaries were removed due to my BRCA-positive status. (This gene mutation increases the risk of breast and ovarian cancer in carriers.) I even lost a toenail because of chemotherapy.
Mentally, I was even worse off. Since I did not focus on treatment, I had plenty of time to obsess about the possibility of recurrence and metastasis. Every little pain or pain sent me into a spiral of fear and anxiety. Was this back pain a tumor in the spine? Did my headache say that cancer had spread to my brain?
I sat for hours at night consulting Dr. Google on my phone and visiting breast cancer message boards for people with similar symptoms who eventually did well. I realized that it was completely irrational. However, at the same time, breast cancer survivors – even those whose diagnosis is early and the outcome of treatment – still have a chance of recurrence or spread of the disease.
According to Metavivor, a nonprofit advocacy group dedicated to raising awareness and research on stage 4 breast cancer, 30% of those diagnosed with early-stage breast cancer will have metastases. So, my paranoia was not completely unfounded.
In the midst of all this, I realized how completely I was ready for life after cancer. When you are in treatment, everyone is mobilized to help you – I felt almost overwhelmed by the assistance and good wishes I had received. You have a team of doctors and nurses at your disposal to answer any possible problem. And there is so much information and support available to help you navigate chemotherapy, surgery and radiation therapy.
But then the treatment ends. Your hair is growing back and you obviously do not look like a sick person. Doctor's appointments decrease from one week to the next, every month, and everyone seems to be returning to normal life. And they assume that you are doing the same thing. But for me, nothing seemed normal.
Even my husband, who was in the trenches with me all the time, seemed to breathe a sigh of relief as I held my breath.
One night, I was in my son's room, googlant symptoms while he was playing. I suddenly understood that he was crying because he had asked me to read him a book and that I was too preoccupied with self-diagnosis to even realize he was talking to me. I knew I had to deal with the psychological debris left by cancer.
I started seeing a therapist specializing in cancer patients and she initiated me to meditation as an adaptation tool to deal with my anxiety. Learning to stay in the present moment to mitigate the consequences of a future that I could not control, made all the difference for me. And she helped me recognize that if anything serious happened, no concern on my part would prevent that from happening – I had to accept the fact that I had no control over this situation.
As with most things, time has turned out to be a balm, and I have seen a significant decrease in my anxiety and fear two years later. But that said, I'm still struggling. I still have bad days when fear gets the upper hand. I still consult Dr. Google (but not as much as before). And I still feel those familiar waves of panic when I think of the possibility that my painful back is not just a contracted muscle.
It's the reality of life after breast cancer – or any cancer, I guess. Once your body has betrayed you so viciously, it's almost impossible to trust it again. When you realize that your own cells have the ability to light you up, to try to kill you, it's really hard to forget.
So yes, I think a lot about death. Although I always know that another disaster can wait, I try to use this concern in a positive way: do not sweat, we are more present and, of course, I do not take for granted my current good health.
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