It is difficult to write about illness. I always want to start in a different place. The narrative does not feel linear. Illness sometimes doesn’t even sound like the right word to choose. But neither does the word disease or cancer.

Being sick,” I sometimes say instead of anything else. “Before I got sick…” or, “when I was sick.” But even those designations of time are not quite right. When I look at a photograph of myself from before I was sick, I feel that woman is someone else entirely.  The last year and a half has been a profound and unmooring experience, and one I turn over in my mind with gratitude, disbelief, and amazement.

In April of 2014, a stomach ache landed me to the ER. Subsequent scans showed an unidentifiable mass on my ovary. I remember bits of that afternoon vividly and others not at all. I remember thinking how embarrassing it would be to be sent home with something minor and non-ER-worthy, but it turned out I didn’t have to worry about that. I remember lying in the ER bed after they told me surgery would have to happen, and soon. My husband, aunts, and a doctor friend of theirs, all stood around me. I remember even then, right at the beginning, feeling held by them. It felt like I was floating, lifted and surrounded by the tangible intensity of their love. The tangible intensity of love is something I learned a lot about this past year and a half. When people “send love” it is not a vague phrase. It is, actually, everything.

After the scan in the ER there were a few weeks of terrible uncertainty. I scheduled surgery; I signed papers agreeing to a full hysterectomy, if necessary, I got ready to discuss ovarian cancer treatment. In the time between scan and surgery I was in so much pain I could barely stand or walk. Of everything that has happened since, I think that pain and that not knowing was perhaps the worst of it in many ways. I look back at the woman who lived during those few days and I feel protective of her.

When I woke up from the surgery, it turned out my appendix had burst and been encapsulated, preventing what surely would have been a far worse infection. The relief is hard to describe. That dance (the one between shock, fear, relief, uncertainty, determination) might be the best way to describe my experience with pseudomyxoma peritonei (PMP).

In increments, information was gathered. It was not a typical burst appendix, I was told. It was something whose name I only would learn to pronounce months later when I began to fully understand the gravity of it. My initial doctor had barely ever seen the disease before, but thankfully he knew enough to perform a very successful surgery in the moment, considering they were completely unprepared for what they found. My aunts helped me find experts at UCSF in San Francisco. I am immeasurably grateful for the level of care I received from the very beginning, and for the expertise of my oncologist. Her recommendations, guidance, and knowledge are why I am hopeful I will live a long life, after all.

We decided not to do regular imaging and instead monitored my symptoms in regular appointments. Then, in April of 2015, my stomach hurt again. My body is nothing if not quirkily poetic in its timing, it seems. A CAT scan revealed small areas suggestive of recurrence. The treatment options were waiting (as the disease was low grade and slow growing), or HIPEC Surgery (the standard of care for PMP, a debulking surgery and heated chemotherapy wash). I had consults with multiple surgeons, one of whom was Dr. Lowy at UCSD, who is known for his skill and expertise in PMP and /tag/hipec/. He advice was unequivocal. Do the surgery. So much of me wildly resisted this recommendation. I remembered how hard the first surgery was, both the days afterward in the hospital, and then the months of regaining my strength and my life. It seemed devastating to consider having to do that again, and so soon.

I don’t remember much of what Dr. Lowy said to me that day beyond the certainty of his recommendation. Untreated I might have lived comfortably and even symptom-free for another decade before problems began to develop.  “A whole decade,” I said, actually weighing the option of doing nothing. It seemed easier somehow. “You’re a young woman,” he said. “I find the thought of only another decade to be unacceptable for you.” I was struck by the word unacceptable. I have mostly tried to adopt a calm and accepting set of reactions during this time. It seems the only way to go, the only way to be the kind of person I want to be. But the fierceness of Dr. Lowy’s “unacceptable” stuck with me. And it reinforced another lesson I have learned — that I do not have to be steady in how I feel or how I react. I can be accepting sometimes and unaccepting others. I can find moments of calm, and I can be angry. If anything, it has taught me to look more closely at myself, at why I act and what I do, at who I fundamentally am.

It took a few days to decide. I found the PMP Survivors group on Facebook and strangers from all over the world wrote to me and comforted me and told me I could do it. I was surprised and moved by how much it meant. The idea of something being rare had always struck me as a strange one, because what is rare to the person who has the experience of that rareness? I am moved by knowing what that means, and being able to connect with others who do as well.

I spoke with a lot of people in the weeks leading up to my surgery: people who’d had HIPEC, other cancers, other surgeries. I was struck by how powerful and fragile we all are, by how much we all want our lives. One woman told me to consider my surgery a collaborative healing process, and something I was an active part of. The surgeons and I were collaborators. It was nothing to fear, but rather something to welcome, something beautiful. This re-framing was one of the most important realizations for me. Of course, I feared the surgery. I imagined the parts of it I didn’t understand, the seeming violence of it, the wound needing to heal, the damaged organs gone. And those things were true on one level, certainly. But the beautiful part was true too.

So, on July 31, 2015 I had the HIPEC surgery, my second major surgery in less than two years. My husband, aunt, sister, and mom all came with me. In these startling moments where we are scared, we are just able to be brave somehow. I walked along the beach in San Diego. I spent time with my family. Honestly, life has never been so clear, so beautiful, so intense.

In the months since my surgery I have read my pathology report many times, in awe of the medicine and the magic that was happening over me as I slept in that operating room. I am totally overwhelmed by it at times. I am grateful for the knowledge of so many people, some of whom I never even met. I am grateful to my almost entirely otherwise healthy body for its collaboration and its desire to heal. I woke up in the hospital and somehow, for the first few moments, I felt absolutely incredible. When Dr. Lowy came to check on me I just burst into tears.

I stayed in the hospital for a week, and my recovery went smoothly. My first time outside, pushed in a wheelchair by my husband, is an afternoon I will never forget. The sun felt so good. My mom, sister, and aunt brought a mango smoothie, which I had two sips of. In our healthy day-to-day lives we forget how good the sun feels, how good mango tastes, and how heartbreakingly sweet it is to be around people we love. We shouldn’t.

I was told that when you begin to measure the time of your healing in months instead of weeks that you are making progress! I have just recently made that transition. It has been four months… I am back on my bike, albeit for shorter rides. I am back to yoga, albeit for gentler classes and no chaturanga just yet. My surgery was a success. They removed my right ovary, but the rest of the disease was removed without any other organ interference. The pathology report was mostly very hopeful news, with a low likelihood of recurrence this time around. That is not always the case for people with PMP, and I know I am very lucky. I think of this once a day, at least. I admire and think often of those whose surgeries and experiences have been much harder and more extensive than mine. This is a rare illness and from what I have seen in support groups online, everyone’s experience of it is very particular and very unique, from diagnosis to treatment. It is hard to find information, it is nearly impossible to Google, and it is scary and confusing. Finding experts is crucial.

Four months out from my surgery, my life is pretty much back to normal. I didn’t think it would be, but it is. There have been patches of difficulty that have surprised me. After the first surgery, I was so glad to be alive and so determined to heal that I didn’t pause much. I forged ahead, returned to yoga, to work, to life. This time has felt softer, slower, even more vital. I have gotten sad more often. When logistics postponed my first check-up scan recently, I had a meltdown. I didn’t realize how much I had been gearing up to be ready for it. There has been so much information, ups and downs, twists and turns, moments of fragility and moments of healing, days of feeling that I know, deep down, what it means to live, and perhaps what it means to die, then days when I feel like there is no point to any of it. But there is a point. It is just not the sort of point we usually look for in a story, the obvious and conclusive kind. There is the specific truth of our experience, and how we feel it in our bodies and how we tell it in our stories.

I am a yoga teacher, and I taught my first post-surgery class just recently. I had my students lie on the floor and instructed them to put one hand on their heart and one hand on their belly. “Feel the physical truth of yourself in the room,” I told them. Because that’s what I try do every day. “Feel a gentleness toward yourself,” I said. Because that’s what I try to do every day. I love my scar. I touch my abdomen often, my resilient ribcage, my skin where the nerves aren’t entirely back yet.

It is often surreal to feel the simple truth of this: that I am thirty-seven and have had cancer and two surgeries. It doesn’t really feel like who I am, at times. But it is.  I have felt love, fear, healing, and what it means to be alive in this body, a process of understanding that I can only begin to articulate, and that I wouldn’t give up for anything.

Laura S

Laura is a fiction writer and yoga teacher who lives in San Francisco with her husband. She was diagnosed with PMP in April of 2014 and receives amazing care at UCSF and UCSD.

#HIPEC, #HIPECSurgery, #pseudomyxomaperitonei

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