Playing The “What If” Game

As a child, I often tried to make sense of the greater world by trying to understand the relationship of that which was happening in my life in relationship with all of the myriad things that could happen. For years, I would travel down the rabbit hole of “what if,” much to the frustration of my parents. My imagination was both vast and reckless; a simple trip to the grocery store could anticipate any manner of catastrophic outcomes, from car accidents to abductions to the store running out of food. I’m sure that my practice drove my parents crazy. To be completely honest, it also drove me a little crazy, because I gave unfettered mental space to dark, frightening possibilities without the years and maturity to rein them in. As I grew older, I recognized these thoughts as a mechanism to find my place in the world. Entertaining the “what ifs” allowed me to engage in a mental exercise that acknowledged the unfairness in the world, the challenges, the pain, suffering, and uncertainty that is a deeply woven into the fabric of the human condition.

Over this past year, I have found myself sitting with a new Pandora’s box of what-ifs. I have been tasked with the management of those dark thoughts, those fears and uncertainties, and the seismic shift in my worldview that has come with a metastatic cancer diagnosis. My what-ifs are less catastrophic in nature and more frenetic, more closely tied with tiny twinges of pain, symptoms and sensations that could be nothing, but, for all I know, could be endemic of treatment failure, organ failure, and ultimately, my death. They are couched in fear for my family, fear of disease progression, fear of loss in too many ways to count.

After I started treatment last winter, I found new agency in the promise of my treatment regimen. This drug combination had been heralded as a new era in breast cancer treatment, and had been adding a number of years to peoples’ lives, often with minimal side effects and a reasonably good quality of life. I found tremendous hope in the tenuous promises offered by this treatment, and felt assured that it was a good fit for me. I no longer looked at my little boy and burst into tears, convinced that I wouldn’t see him grow, a what-if that terrified me to the core of my being. As treatment cycles ticked off and my first scan came and went, we received incredible news: not only was my cancer stable, but much of my disease had abated, my tumors smaller and less active than before. My second scan showed complete stability as well.

As I approached my third scan, however, my anxiety began to climb. I found myself lost on a path of what-ifs that I couldn’t fully reconcile. I was convinced that the scan would show progression, that my treatment was ineffective, that slowly but unmistakably, my body was failing me. For weeks leading up to the scan, I laid awake each night, unable to close my eyes to the terrors finding space in the dark recesses of my mind. I was convinced that my days would begin to be numbered, based on these scan results, and that my place in the statistics for metastatic breast cancer would shift dramatically from my previous expectations. However, that scan showed further regression of my disease. Few times in my life have I felt relief so palpable, so consuming as that moment, and my family, my care team, and I felt incredibly optimistic at the manner in which my body had continued to responded to my treatment regimen.

This optimism buoyed me well into this holiday season. I finished twelve cycles of treatment, a milestone in my mind, and I continued to feel good, both physically and mentally, about the state of my disease. I approached a year on this treatment, and found myself looking back with relief and recompense at the hell I had been through. In addition, I eagerly anticipated the holidays this year. Our Christmas a year ago, in the throes of the newness and trauma of my diagnosis, was dismal and sad. Our family had carved out a special vacation for the holidays this year to rest and celebrate – a victory lap of sorts to commemorate a year of survival.

I went into my fourth PET scan feeling much more assured than I had felt at any previous scan. For the third scan, I was completely consumed with worry that there would be progression, and all of my fears had been unfounded. I couldn’t imagine that much would have changed in the 12 weeks since those results, and also had no physical indication to counter that assumption. I was not in pain, my blood work looked fine, and I continued to adhere to treatment in the same manner that I had for nearly a year. I felt like I was hitting a stride in my new life; I found new routines that worked both for me personally and within the larger framework of our family. I had found a measure of mollification with my illness. Yes, it had taken so much from us over the past year, but we had made it through. We had found a new rhythm in which we rebuilt the life that had been shattered by my metastatic breast cancer diagnosis.

I nearly forgot to call my oncologist’s office the Friday after the scan to follow up on my results. At last, I had found a place for this aspect of treatment in the regular workings of my daily life. My anxiety over the results was subdued, quelled by the faith in my treatment, my body, and buoyed in a hope that I had only recently allowed to re-enter our lives. When my phone rang on Friday afternoon, I answered, not expecting my oncologist to be on the other end. Generally, I get a call from one of the nurses who gives me a brief review of my scan results and life goes on. Even then, though, few alarm bells rang in my head. I greeted Dr. G and, jovially remarked that I was looking forward to some good news. She was quiet for a moment, and in that pause, I recognized that the news I was about to hear was not the news I was expecting. There was some significantly increased activity in my bone metastases, she explained, but she wanted to take another look at the scans with the radiologist, and compare them with my scans from a year ago, prior to starting treatment. She was not certain that my disease had progressed, but could say that activity had definitely increased, and wanted further clarification as to what sort of activity was showing up on my scans.

Shit.

I burst into tears as soon as I got off the phone, and moped all weekend. This was not the call I had expected – though really, you can’t prepare for it no matter how much you try. I couldn’t fully wrap my head around these results – how was this happening, when things had been going so well? That deflated feeling of being repeatedly punched in the gut came rushing back to me. We had just done this, a year ago. This was supposed to be our Christmas celebration in which our lives were less overshadowed by cancer, not a sordid repeat of the previous year. I found that dark hole that held the what-ifs and went right in, head first. That hole had widened considerably, and was now more of a cavern, a cave deep with twists and turns, all of which held terrifying glimpses into the possibilities of my waning mortality. I felt like Ebenezer Scrooge, accompanied by a ghost of Christmas future as I descended deeper and deeper into that hole, and let my grief, my sadness, my fear, and my anger consume me.

That following Monday, I had my regular monthly appointment with Dr. G. Christian came with me, as unsure as I was about what it would hold. We braced ourselves to discuss the next steps in treatment and what this possible progression indicated for me going forward. The rhythm, the routine, of these monthly appointments had been indelibly interrupted, as we found ourselves in the same office, only a year later, waiting with bated breath for explanations to temper bad news.

Dr. G didn’t beat around the bush when she came in to meet with us, as is her customary (and much appreciated) style. She had reviewed the scans at length, and confirmed that all of my bone lesions were once again active. I had developed two very small new lesions as well, and this was an incontrovertible indication that my current line of treatment was no longer effective. We had to pivot, find a new plan. Again. The week before Christmas. Weren’t we just in this very place? Why now? Why me? What happened? Unfortunately, Dr. G explained, this is the way that metastatic breast cancer works. Treatment is effective until it isn’t, and sometimes it just…happens. Sometimes there are clues, or ways to stave it off, and sometimes there aren’t. These results are out of my control.

I couldn’t stop sobbing, great, heaving, weeping tears that ebbed and flowed throughout the rest of the visit, through our car ride home, and throughout the evening. That night, the fears I thought had begun to recede came rushing back through those floodgates. I felt such hopeless despair that I was unsure of my ability to press on from moment to moment. I couldn’t look at my son, or even think about him, without drowning in the sadness that he might grow up without a mother. I was shipwrecked on an island with only myself and my grief, not ready to wave a white flag, but unable to pull myself up to carry on.

Eventually, through the week, my tears slowly gave way. I found the energy for productivity, and continued to reach out to my care team in order to form a plan. The next steps began tenuously: we discussed different options, drug combinations that might work, but my faith in my body’s response was all but shot. Dr. G was also leaning toward a different path. The manner in which my disease progressed fit the profile well for an early-stage clinical trial taking place at my cancer center. My hysterectomy and oophorectomy over the summer significantly improved my candidacy for the trial, and, after the trial clinicians screened me and found me eligible, we agreed to move forward with the clinical trial as my next line of treatment. I begin the initial trial testing tomorrow.

It’s not lost on me that I will enter this clinical trial on the last day of 2018. This is a year that has changed me and contorted me, challenged me, wrecked me, and built me back up in ways I never imagined. The terrible what-if that I had fought so desperately to suppress had come to fruition. I don’t know what to expect with this trial. It could work, either for a little bit or for a long time. Or it could not work at all. But it offers another chance. My New Year’s resolution for 2018 was to recognize the opportunity granted me by this terrible diagnosis to exist outside of my comfort zone, to push and challenge myself to recognize the things that scare me and to confront them, to engage with them and claim ownership in their roles in my story. To do the things that scare me. I am finding, in a raw, visceral, agonizing way, that the limitations I encounter in my life are as much liberation from the restraints of the what-ifs as they are manifestations of my deepest fears. In many ways, allowing myself to continue to live, both in spite of these circumstances and because of them, has been an act of courage. The act of existing alongside the what-ifs has begun to redefine my new life with cancer in a way where the what-ifs do not run counter to my life, but serve as way-finders to recognize and incorporate my deepest fears into the larger narrative of my personhood.

7 thoughts on “Playing The “What If” Game

  1. Oh, Emily. My heart is with you. I pray for you to have the success that a friend of mine just had – if their bodies can do it, yours can. Sending you love and faith.

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  2. My thoughts are with you Emily, I wish I can take your fears and pain away. As you know cancer is a mind game for you and your family, to stay ahead of the fearful thoughts, use that beautiful smile of yours and before you open your eyes in the morning Smile! Embrace the day, every second till you go to bed. Ask God for strength, each morning and night and he will hear you😘🦋🧚🏼‍♀️

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  3. Sending you love and light today, my dear friend. You are dealing with a terrible situation with tremendous courage, you get knocked down, but you always get back up. As some have said, your track record for getting through the bad days is 100%. Keep putting one foot in front of the other and keep talking as you navigate these new “what ifs.” You are powerful. You are enough. You are the only one like you. 🙂

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  4. Hey Bem,
    I love you lady. In the last year I’ve been unable to find the right words to say to try and let you know I’m still here. But I am. And I believe in you.
    Megan

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  5. Sending you so much love and light to fill your heart and soul. You are truly an inspirational being. Thank you for being so raw and real and opening up all of your vulnerabilities to others. Sending you a huge hug from someone out here in California who just….cares.

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  6. Hi Emily,
    I am sorry the news you got was not what you’d hoped for. How very disappointing and scary. I hope the new trial successfully does the job. Thank you for your candor. I so admire your incredible tenacity in pushing through the difficult challenges you’ve been given. Hoping for good results from next time’s scans. Thank you for sharing. All my best.

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