It was Jan 28, 2014, that was the beginning of losing my voice. My voice, which had not failed me previously, ever, was about to be put on hold for more than a year. My words, which had always rescued me in the worst of times, were very shortly to be silenced, and I didn’t even know it. I didn’t feel it coming. How is that possible? And then, in the last few days, slowly, my voice began to reassert itself, whispering to me, letting me know that it was waking up out of a deep sleep. Stretching, it began to know that silence was not a good thing, and that it needed to reassess, reassert, and reestablish itself.
This morning, all of the pieces fell into place, or should I say that my mind has been at work all night, creating the pictures and the words that I was so used to depending upon. While I am tired, because I have been at work all night, it is a satisfying exhaustion because now I know that my Voice is back. This is how it all happened:
Having missed the usual December date for my annual mammogram due to an acute bronchitis, I rescheduled for January 28, and in the midst of my busy life, made sure to work in that appointment. Bidding the tech a “Goodbye until next year”, the busyness took over again. Within three days, I would pass through a door that slammed shut behind me, with no handles on my side of the door. I came in, but would never return through that door again to my life as it had been. The details are unimportant, but suffice it to say that tests, further tests, scans, MRIs, ultrasounds and a biopsy later, a diagnosis was made. All the other functions of life stopped. No shopping, no cooking, no details, just submitting to the hurried need for decisions and action and scheduling. In shock, and without the medical opinion that I had always depended on, I let the tide sweep me away. There were referrals, but how did I not take the time for second opinions? The days and weeks passed in a blur of surgeries, pain, shock, mishandling, infection, and trying to get what I needed for my mental as well as physical survival, because in truth, a diagnosis of breast cancer attacks the heart and the mind, just as the cancer cells attack the body. While it seems as if there are always choices, there is no choice. One goes along, or at least, with no solid rock to hold onto, one is swept away.
After electing a double mastectomy, some sense returned, but still there were endless doctor appointments, some mishandling, and finally a conviction that I had to seek other opinions. The City of Hope and UCLA agreed that the chemotherapy that was making me so sick as to need hospitalization was not the ideal treatment for my particular kind of cancer, lobular rather than ductal. Another decision to make. A change in care, needing to inform the oncologist who had be in charge of my care that I would no longer be using his services, transferring records, wondering if the outcome would have been any different if I had gone to UCLA to begin with, all leading to a sudden about face in treatment. No chemotherapy, hurrah! No sickness, no being certain that death was preferable. Freedom from endless appointments, exhaustion yes, fatigue, yes, but a glimpse at what could look more like a normal life. Still, thinking that if I were a good girl, and did all the right things, followed instructions, I would get a pass back through that door. Things would go back to being as they had been. OK, sure, I have a port in my chest, and while my temporary tattoos delight me because they soften the disfiguring scars where there had once been breasts, but I could go back through the door, right?
Last night I had dreams of a journey. Parts of the dream were me on vacation, but instead of seeing museums and fountains, and lovely vistas, I was walking around city streets with nothing particular to recommend them. Just ordinary shops and people, no glorious weather or sights or sounds or treats. And I kept feeling as if I had made different plans, but this is what I got. Waking and dozing, the journey metaphor remained, and I saw myself on a train. It wasn’t a high speed train, but one that moved sedately along, traveling through the landscape, ever forward, not a round trip, but one with a destination. While the ordinary city dream was definitely a vacation, even in my dozing state, I was aware that the train was my life. A few weeks ago I realized that Cancer had taken me through a door through which I would never return and resigned myself to the fact that no matter how good I was or how strictly I followed instructions, I would not get back through that door through which I had arrived here. Now, my train journey made me realize that this is what happens in life all around us. Even babies, after they learn to walk, don’t really go back to crawling, it is so much less efficient, and we learn to see things from the height of a head’s eye view, instead of from the floor. We do not mourn the loss of crawling as a means of locomotion. We do not look back when we leave elementary school for the mad excitement of junior high and high school, and neither do we really long for those carefree days of high school as we are negotiating college. When we marry, we don’t think of it as closing the door on single, and when we have kids, we don’t long for childlessness. I could go on but you get the picture. Life is like a train trip, or a house arranged with its rooms lined up one after the other. As we pass from one to the other the door closes behind us and we proceed to the next new state of being. Even deaths we accept as somewhat normal if they fit and are not untimely. So I ask myself why did I expect to return to that room, the one just before the one with Breast Cancer? Because it contains so much that is unknown and unfamiliar. We usually take along some of what we had or experienced in the last room, but this time, even our bodies are not our own, and we drag along fear.
But this mornings’ dreams had a message as well as a journey. As I awakened, I remembered reading a story, quite some time ago, by a woman who, like all of us expected to give birth to a pink and perfect baby, but instead gave birth to a child with Down Syndrome. Can you hear the door slamming? Her story described in a metaphor that it was like expecting to be going to Paris, and arriving in Holland instead. But she went on to say that she had discovered many delightful things about Holland that she had never expected to find, and how she had discovered that Dutch was a wonderfully descriptive language and how she had even begun to understand it and found it to be surprisingly melodious and descriptive. While she was sorry to have missed out on seeing Paris, she was not at all sorry that she had come to Holland after all.
What I am saying here, or rather what my dream state was trying to tell me was that although I find myself in a new and unfamiliar place, where there are probably some scary dark corners that I would like to avoid, there are also some new and interesting experiences to be found. Already, one of the benefits has been profound. I agitated for a support group that would meet my needs and I have been so fortunate to have been heard. Our lovely little coterie of women has been growing since we first met in October, and with each addition, there is a new friend, another person who shares information and heart, a woman who know what I feel and who buoys my spirit with her courage. We share far more than a disease in common, because, with eight or nine women in the room, there are eight or nine forms and stages and experiences of cancer, but there is one generosity of spirit. There is one willingness to share whatever can and needs to be shared with an open heart and a sweet and understanding smile.
So for those of us on the far side of the closed door, hello and welcome. I hope that this part of the journey will be as broadening as the other side was. I hope that we are able to learn its lessons and to share them with the people we love, and even with those we don’t. I mostly hope that we can be comfortable here.