Because the CEA was still elevated, I went ahead and scheduled the PET scan, right after a trip to D.C. for a colon cancer event. I had to wait through the weekend to hear the results. At least there was much distraction, with Josh’s parents visiting and Mia’s birthday party on Saturday. Yes, life marches on, cancer or not.
Two spots lit up on the PET scan, one to the left of the spine by the psoas muscle and one in the right pelvis. Dr. A.C. thought the spot by the psoas muscle was probably nothing. To gain further clarity, he wanted me to have an MRI of the abdomen and pelvis. Josh and I asked a series of questions: Would the surgeon have seen these spots during the surgery? Not necessarily. Would the CT scan performed right after the surgery have picked these spots up? No. Is this scan bad? No. Is she going to be okay, and I mean…I know what you mean. Yes, I think she can be cured.
I admire Josh for having the courage to ask that last question, and I admire the doctor for making such a statement. Nice to hear, but it honestly doesn’t mean much to me. It’s not that I don’t have the courage to ask about being cured, but rather I think whatever the answer, it is irrelevant. Cancer is a dynamic disease. Doctors are not omniscient. An answer one day will not necessarily be the same the next day.
But all the same, I was feeling good and optimistic. The psoas muscle spot was probably nothing, and the thing in the right pelvis, if cancer, likely represented only one cancerous lymph node, but the MRI would tell us more.
For some reason, the secretary scheduled my MRI with Josh. He was anxious that I get it done right away. The only available spot was the next day at 7:45, so Josh said yes. After I completed Round 6 of chemo, he and I walked over to the MRI facility on First Avenue. Josh went home to relieve our nanny and see the girls before they went to bed. The MRI took about forty-five minutes and involved lying in a tube that made me think of coffins and being buried in the ground—more so than the PET scan, because the MRI machine is even narrower, and more confining. The only thing that was not tomblike was the constant banging and clanging of the machine, which sometimes made my entire body vibrate on the table. It also involved lots of inhaling and exhaling and holding my breath for significant periods of time. I got done a little after 9:00, took the subway, and didn’t get home until after 10:00. It was a long, exhausting day.
I got the MRI results the next afternoon. The psoas muscle spot, the one that the surgeon and the oncologist had thought was probably nothing, is in fact something. There are two cancerous lymph nodes in that spot—one is necrotic (i.e., dead cancer), and the other is alive. Now you see why I don’t put too much stock in doctors’ prognostications.
I forwarded the MRI report to Josh. Upon review, he is “rationally optimistic.” The fact is that my organs are clean, which is a good thing, and for there to be two lymph nodes involved seems like not a big deal. But you can begin to understand how absurd all this sleuthing and surmising can be. In a strange role reversal, I am not so optimistic. First of all, PET scans and MRIs cannot reliably detect growths on the peritoneum. The one tumor found (and removed) outside my colon during surgery was a drop metastasis on the peritoneum above the bladder. These recently discovered cancerous nodes are likely there.
From the beginning there has been talk about me being a good candidate for something called HIPEC surgery—shorthand for hyperthermic intraperitoneal chemotherapy—a grueling procedure that involves making a massive incision and bathing my abdominal cavity in heated chemo for ninety minutes. If it sounds equal parts sadistic and desperate, that’s because it is. The procedure is also known among the cancerati as the “shake and bake.” The cut is ugly, and the recovery is hard. I feel like these MRI results put me that much closer to HIPEC, and I’m not happy about it.
I’ve told Josh that the risk has to be sufficiently high for me to undergo HIPEC. In any event, it seems like a diagnostic laparoscopic surgery, in which a surgeon would go in to just look around, is an inevitability given the limitations of scans for detecting peritoneal growth. I also felt like I was diagnosed as Stage IV because of a technicality, due to a tiny drop metastasis to the peritoneum—a drop signifying noncirculatory invasion because it’s a literal drop off the primary tumor and not cancer spreading through the lymphatic system. I felt like I was more a Stage IIIC than a Stage IV. Now these MRI results confirm that I was rightly categorized as a Stage IV, and that I have metastatic disease. All just numbers, I know, but numbers matter to some degree, no matter how much I want to deny their importance.
Because metastatic disease is almost never curable.
8
The Bliss in Making the Journey Alone
I went through the infusion of Round 5 of chemo on a Monday in October mostly alone, with a dear friend coming at the tail end to take me home. Usually, Josh meets me at the cancer center sometime before the infusion starts, but this past Monday he had a $100+ million deal signing and he couldn’t leave the office. I told him not to worry about it. I come from the world of big corporate law, so I understand how it is. $100 million isn’t that much money in that world, but it’s significant enough that clients have expectations. In response to his self-inflicted guilt, I reminded Josh that work, and more importantly bringing in an income to pay for health insurance and the complementary treatments not covered by health insurance, is more important than ever now. Besides, this was just one of twelve chemo treatments; it wasn’t surgery; it was no big deal. Even with the cloud of cancer hanging over us, life (as distorted as life will be from now on) must go on—the children must go to school, the conference calls must take place, the bills must be paid.
Despite my nonchalance, I was sad, and Josh saw through my bravado. I had gotten used to Josh being around for my chemo days, just as he’d been around for all the days and nights when I was in the hospital and for the many weeks afterward, while I physically recovered and we together struggled to come to terms with our new reality.
So on that Monday I was alone when my blood was drawn for the usual tests. Lunch—mediocre Thai food from somewhere down on Third Avenue—I ordered and ate by myself as the oxaliplatin and leucovorin raced through my veins. I was alone when the nurse told me that my CEA results were back. I sat in my recliner by myself as the sick feeling in my stomach dissipated, and processed alone the information that it was 19.8, barely a one-point drop from last month. “Are you okay?” the nurse asked, concerned, since I’m sure the disappointment and anxiety were painted all over my face. “Yeah…Yeah…I’m fine,” I weakly reassured her as a million thoughts ran through my head. Six-point drop in the first month, but only one point in the second—what does this mean? Is the chemo becoming less effective? Maybe I’ve deviated too much from my diet, too much sugar consumption. Maybe I’m not meditating or working out enough. Maybe the spots on my liver have become cancerous.
Josh called to check in at some point, and I told him. Maybe I shouldn’t have, since he had a big conference call within minutes, but I know I would want to know if our roles were reversed. “What are the doctors saying? Get them on the phone and demand some answers!” he ordered me. He called me ten minutes later and informed me that based on his quick research we shouldn’t be so concerned, that effectiveness of chemo is not necessarily reflected in the proportionate downward progression of the CEA.
I was sad that that Josh wasn’t there with me, but I think it was actually good for me. Being alone reinforced something I had been feeling—and denying—for quite some time now. As terrifying as it is, battling cancer is an individual journey, and the individuality of it is what I must come to embrace. Indeed, each of us as we walk through the journey of our life does so alone. Sure, there are parents, siblings, cousins, friends, lovers, children, co-workers, and many other people who fill our lives, and sometimes their presence and chatter can make us forget that our journey is solely our own to make of as we will. But the truth is that we each enter and leave this life alone, that the experience of birth and death and a
ll the living in between is ultimately a solitary one. While Josh may understand to some degree the distress over a CEA count that isn’t dropping fast enough, he cannot know the depth and breadth of what I felt when I heard the news, nor what I feel on an ongoing basis (nor can I truly understand his emotions). A couple of weeks earlier, when the oxaliplatin brought on an episode in which I couldn’t breathe while pushing Belle to school in her stroller, I endured the panic alone and found by my own will the calm within to get Belle to school and safety, and then myself to the doctor. Similarly, while I may be able to relate to some degree to other young mothers as they attempt to cope with their cancer diagnoses, our emotions are somewhat different because they have been informed by vastly different life experiences. I try to share my cancer-fighting journey with the best words I can think of to convey the complexity and nuance of the onslaught of emotions, but words have their limits. No matter how much I would like to take Josh and all who support me on this journey, I simply cannot. And I confess—I am afraid of making this journey alone.
That’s hard for me to admit. I have always prided myself on being good at being alone and felt that I was one of those few people (not troubled by social disorders) who found deep joy in being alone. I thought I’d mastered the art of being alone through my solitary travels throughout the world. It’s the memory of those solitary wanderings that I am now turning to in order to quell the fear I have of making this newest journey by myself.
Before I turned thirty-one I had set foot on each of the seven continents. Maybe I’m cheating, because I haven’t actually been to the country of Australia yet, but I have been to New Zealand, and I think New Zealand must be part of the continent of Australia. New Zealand/Australia was the last on my list. I hiked through the South Island for two weeks in November 2006, going from one cabin to the next (New Zealand has an elaborate, although still rustic, cabin system that obviates the need for camping—a good thing as far as I’m concerned), carrying my own gear on my back (with the exception of a few pounds that others who took pity on me shouldered for the duration of the trip). Josh and I had been dating six months by then, and within three months we would be engaged. Despite our romance, Josh did not go with me to New Zealand. I didn’t invite him and he didn’t ask to come.
Josh understands how possessive I am about my solitary travels, how jealously I guard my experiences of discovery. I almost always went alone (meaning without anyone I knew before the start of the trip), or as alone as possible given my own physical limitations. I went to New Zealand with a nonprofit called Wilderness Inquiry, dedicated to making the outdoors accessible to people with all kinds of disabilities. I went to South Africa on safari with the same outfit in 2004. I went to Antarctica in 2005 with a group based out of Connecticut that specializes in polar expeditions without any luxury or frills. To South America, Asia, and Europe from 1995 through 2004, I generally went either as part of a study-abroad program or as a solo backpacking adventure, with, as my trusty companions, my Lonely Planet guidebooks to tell me where to sleep and eat and what sites to visit, a magnifying glass for reading the small print on maps, and binoculars for all the street signs and plane and train announcements I couldn’t see.
I know there are those who think I was nuts for choosing to travel by myself and for actually liking it, even putting aside the fact of my limited vision; I know Josh must have thought this when he first met me. Eating breakfasts, lunches, and dinners of strange foods alone, wandering the great ruins of the world alone, getting lost in the growing darkness in a strange city in the hunt for that night’s accommodations alone, riding on boats, buses, trains, and planes alone, with no idea of whom I would encounter in the next moment or of the future that lay ahead. You see, traveling alone was my bliss. Some people turn to mind-altering substances. Some skydive. Some play with fire. Some make fancy wedding cakes. I chose to travel the world to chase euphoria. Beyond the bliss that came from beholding the divine and breathtaking beauty of our planet’s terrain and wildlife as well as the man-made creations of the geniuses who have come before, traveling alone to the seven continents represented a deeply personal journey that soothed and empowered my soul, quieting my anger and selfdoubt and imbuing my spirit with a sense of unparalleled strength and independence in a way that no one and nothing else ever could.
From the moment I was old enough to think about college, I dreamed of going far away. I ended up at Williams, a little college nestled in the Berkshires in western Massachusetts, famed for its vibrant fall foliage and notorious for its frigid winters. Williams was as far away from sunny Los Angeles as I could have imagined. Even as I cried that first night in the dorm, having said a tearful goodbye to my mother and sister, I still longed to branch out. I told myself that night that despite my homesickness, I would get over it and then study abroad in my junior year. I ended up studying Chinese in college and spent my junior year in Harbin (an industrial city in northeast China known for being the first stop on the trans-Siberian railroad into Russia) and then Beijing. That year, during the months off between semesters and the periodic weeklong breaks, I hopped on all manner of transportation to far-flung provinces, listening to crowing chickens as I rode down the Yangtze River and gaping in amused horror as the door fell off the minibus taking me and a bunch of locals through the mountains of Gansu Province.
I discovered that year that traveling, and traveling alone especially, made me confront my visual disability as nothing else could. It’s hard for me to explain how I see the world, in part because I don’t know any other way of seeing. I can only explain my vision in clinical terms. I measure 20/200 out of my right eye with corrective lenses and 20/300 out of my left eye with corrective lenses, meaning that what a person with 20/20 vision can see at 200 or 300 feet, respectively, I need to be at 20 feet to see. In addition to that, my left eye muscle is so weak that I almost never use it. Both measurements qualify me as “legally blind,” which I suppose means that I can comfortably say that I have a disability that must be accommodated in accordance with the law. These numbers don’t take into account my impairment with respect to reading and seeing things close at hand. Fonts smaller than 10 points are a challenge, and even with a 10-point font, reading can be a slow process without a magnifying glass. This is how I’ve seen the world since I was four years old. These are the limitations that I confront on a daily basis, but nothing—absolutely nothing—makes those limitations more real, immediate, or frustrating than when I travel alone, when there’s no one I know to lean on, in a strange place where I can’t speak the language.
Traveling alone was the single most effective and grueling test I could put myself through, emotionally, mentally, and physically, to prove to myself that I could do as much as anyone else could. As I traipsed through the hidden back alleys of China’s ancient cities and the winding medieval streets of Florence, and the unfriendly boulevards of post-Communist Budapest, searching for a youth hostel, tea house, or museum, frustrated and angry at my inability to see the numbers on buildings and read the names of businesses, I learned to control the frustration and the rage at my physical limitations. I had no choice but to find my way, for no one was there to help me. I tapped into reserves of courage and resourcefulness that I would have never known existed but for the fact that I had consciously and willingly put myself into such trying circumstances. I learned to communicate with strangers with few words, with gestures and body language. I learned to gauge the four corners of a compass by the position of the sun. I learned to stay calm, to be patient with myself, to allow myself to make wrong turns. And when I finally made it to the majesty of the Sistine Chapel and stood within the ruins of the Forum, as much as I appreciated what I was seeing, I was more grateful for my own abilities. The sense of accomplishment in knowing that I had reached my destination by my own doing was always the greatest high I could ever imagine finding—pride in my own emotional wherewithal, my own problem-solving capabilities, my own body’s capacity to carry
thirty pounds on my back for hours on end up and down stairs and mountains. In the greatest of ironies, traveling alone made me feel whole and complete inside; it helped to heal my anguished soul, which for so long had been obsessed with the metaphysical questions.
Part of the sense of feeling whole and complete came from the joy of meeting all the new people along the way. It was only when I traveled alone that I was truly open to meeting people and to learning everything they had to teach me about their worldview. There was also a tantalizing freedom in encountering those who knew nothing about me. Much in the same way a guy will spill his guts to a bartender, I found myself confiding in strangers about what ailed me. In these strangers’ eyes, I stopped being the invalid I’d always known myself to be and I could re-create myself, transform myself into someone brave and smart and funny and engaging. I’ll never forget the mysterious Swedish girl in Paris with a broken back, traveling alone in a wheelchair, with whom I shared a hostel room for one night; she told me that I was worthy of love—I know how cheesy that sounds, but that kind of sentiment is most welcome when you’re traveling around the world on your own. Or the compassionate Dutchman who took the time to describe to me the details of a seascape he saw with his photographer’s eyes. Or the tortured Turkish American girl who dragged me to all the techno bars in Beijing as if the loud thumping music would drown out the things that haunted each of us. All of these people whose threads of life have touched mine taught me about different ways of living, thinking, and being, and in doing so enriched my consciousness and touched my soul.
The Unwinding of the Miracle Page 4
