The Unwinding of the Miracle
Page 11
Yes, he wrote, one of his actor patients had gotten surgery last year from a Dr. James Y. at UCLA, and he’d been quite happy with the result. Could Cousin C please provide him with Josh’s cellphone number and he would reach out to Dr. Y.?
A couple hours later, while Josh was in the car with my brother, on their way to pick up some lunch and considering some unpromising leads for a surgeon, Josh’s phone rang. “Hi, Josh. This is Jim. Paolo told me about your situation. How can I help you?” A top surgeon at UCLA calling Josh on his cellphone on a Sunday during a holiday weekend and being so incredibly friendly and helpful—it absolutely defied all of our preconceived notions about arrogant, aloof surgeons. Dr. Y. told Josh that he would operate immediately, before seeing any biopsy results, because in almost all cases, something like this was cancer. He told Josh he would be glad to take me as a patient and that he would serve as the accepting doctor in the hospital transfer process. Josh and I were relieved and ecstatic. This was the first step in me getting out of that hellhole of a hospital.
A worsening obstruction with increasing pain and nausea, combined with the frantic desperation of knowing that I had a malignant growth inside me, made the few hours that had elapsed feel like days and weeks, and so we quickly moved (or at least we tried to quickly move) on to the next step in the process—getting through the hospital and insurance company bureaucracy to effect the hospital-to-hospital transfer, and by “we” I really mean Josh, because he was the only one capable of dealing with such matters at that point. Josh is not one of those people who likes dealing with the details of life (e.g., paying bills, buying soap, planning vacations, arranging for the fixing of broken appliances). He also hates talking on the phone, whether to order a food delivery or resolve the faulty cable. When there’s an issue of any sort, I’m the one who calls to complain and demand and take care of it. During the more than twenty-four hours it would take for me to be transferred, I would witness a new side to my husband as he extended himself to do what did not come naturally to him. He would call and harass the various parties involved as we waited and waited and waited—the staff at Garfield Medical Center, the staff at UCLA, the insurance company—as UCLA sought to assure itself that my insurance company (unfamiliar to West Coast medical providers) would pay the bills.
I was lying there forlornly late that Sunday afternoon, starting to realize that a transfer that day was looking less and less likely given the nonresponsiveness of my insurance company, when my room phone rang. It was someone calling from UCLA for me. The guy on the other end wanted to verify my identity. “Mrs. Yip-Williams, our records indicate that the name associated with your social security number is Ly Thanh Diep…our records indicate that your address is 911 West College Street, Los Angeles, CA…our records indicate that your phone number is (213) 250–0580.” My name had at one point indeed been Ly Thanh Diep, and my address and phone number thirty-three years ago had been exactly as the man said. Thirty-three years ago I had received my eye surgeries at UCLA, the surgeries that would give me sight. That was the only possible reason why this man was reciting this ancient information about me. And yet somehow, realizing that I was going back to the place where I had received my first surgery ever, which had in a certain respect saved my life, after all these years made me feel like I was coming full circle, like there was a certain comforting rightness about what had happened and what was about to happen, like the nudge of God’s hand.
Josh was on the phone with the insurance company at 5:00 A.M. local time the next day, trying valiantly to push the bureaucracy along. With the start of regular business hours and the return of a full staff, my insurance company moved much more quickly. By late morning, we received word that UCLA had financially cleared me for the transfer—a further hurdle crossed. However, there was to be yet another.
There were no available beds at UCLA and there likely wouldn’t be a bed until Wednesday or Thursday, we were told. I was horrified—Wednesday or Thursday? I felt certain with the worsening pain in my gut that I would be dead by then. We briefly considered ripping the IVs out of my arm so that Josh could drive me to the ER at UCLA—that would surely get us a bed. Reason prevailed, however, as that strategy held a certain amount of medical risk and uncertainty, not to mention uncontrolled pain and nausea. In desperation, Josh called Dr. Y. on his cellphone and begged him for help. Dr. Y. made a few phone calls and informed us that there were in fact twenty-eight people ahead of me in line for a bed at UCLA Ronald Reagan, and that he could do nothing about moving me up in that line, in spite of my desperate physical condition. However, UCLA Santa Monica—a branch of the main facility—had a “favorable” bed situation; Dr. Y. himself did not operate at Santa Monica, but he would get me to the best surgeon at Santa Monica. My financial clearance would be good for either UCLA facility, so there would be no further delay in that regard. Josh and I were desperate—yes, whatever; we need to get out of here!
I could feel myself closer to death with every minute that I remained at Garfield Medical Center; at this point, we were just holding on to the hope offered to us by this faceless surgeon whom we had never met (and indeed would never meet) and about whom we knew nothing (other than the limited information discoverable through Google).
An hour later, as I was shuffling down the dreary hallway with Josh by my side in an effort to escape the claustrophobia of my room, someone came to tell me that the ambulance was on its way. Within minutes two EMTs were wheeling a gurney into my room, and I happily and very awkwardly climbed aboard. They fastened a belt around my middle; I was careful to hold the strap away from my distended stomach, to prevent compounding the pain and discomfort. They hoisted the gurney up and pushed me down the hallway, onto the elevator, and out the double doors into a waiting ambulance. I’d never been on a gurney or in an ambulance. Perhaps it was adrenaline pumping through my veins at finally getting out of that place, but I felt a bit of euphoria lying on that gurney, seeing the world from a completely new and exciting perspective.
During the summer before I started law school in 1999, I spent five weeks studying Spanish in Seville and then another five weeks backpacking alone through much of Europe. I was a little nervous about traveling alone—most people would be—but then add to that my visual limitations, and I was more than a little nervous. It was one of those things I had to do to prove to the world (but mostly to myself) that I could. I never booked accommodations in advance. I’d simply jump off the train in whatever new city, having just read the chapter on that city in my trusty guidebook, and look for a youth hostel using whatever map I could get my hands on. One warm summer night, with many more weeks to go in my travels, I was lying on a train platform, with my beloved purple backpack as a pillow, somewhere in the South of France, waiting for the next train that would take me to Rome. I was surrounded by a handful of other backpackers, yet entirely alone. I will never forget as I looked up at the starlit sky thinking that I had no idea where I would be sleeping the next night or the night after that or the night after that. And while there was a tinge of fear at the thought, I felt an overwhelming excitement for what lay ahead. There was a certain carefree joy in the not knowing, a freedom in not having to be anywhere or with anyone, in the promise of limitless possibilities. And then I felt an overwhelming sense of peace that chased away whatever trepidation I had, for I knew that everything would be okay, that I would find my way.
I felt that same way as I lay on the hoisted gurney, looking down at Josh as he walked beside me—yes, down at my six-foot-three Josh for a change. I had no idea what would happen the next day or the day after that or the day after that. In that moment, bizarrely, I was smiling with anticipation, excitement, and peace, off to the next adventure in my life. I bombarded the EMTs with questions, about where they came from, about whether they would turn on the sirens for me, about the most harrowing rescue they’d ever done.
As the ambulance raced onto the 10 freeway, heading west, toward the
ocean, my eyes opened, and I began to wake from my nightmare and move from its darkness toward the light. And so began what I call the golden and magical part of my story of diagnosis.
18
A Love Story
The drive across Los Angeles was speedy, the freeways fortunately and bizarrely free of late-afternoon traffic. Within twenty-five minutes, I could smell the ocean and was staring up at the crystal-clear blue sky (another rarity for Los Angeles). The EMTs pushed me through the most beautiful hospital I had ever seen, brand spanking new, with wide and glistening hallways that seemed to go on forever, past orderlies, nurses, and doctors who smiled kindly at me, everything and everyone bathed in a soft golden light.
I expected to stop at a desk to satisfy some bureaucratic paperwork requirement, but no, the EMTs pushed me right into my own private room with a view of the Santa Monica Mountains and overlooking a quiet green courtyard (where my children would often play in the days to come), a flat-screen TV, real wood detailing, and three nurses clad in dark blue waiting to fuss over me. I had risen out of hospital hell and into hospital heaven.
The small army of nurses weighed me, changed my gown, started a new IV, drew blood, and got me a basin over which I hung my head as I begged for antinausea meds. Within half an hour of my arrival, Josh, who had driven there separately, walked through the door. And within twenty minutes of that, shortly after 5:00 P.M., my colorectal surgeon, Dr. D.C., with his chief resident, Dr. O., standing by his side—both of them commanding, confident, and oh so reassuring in their crisp white coats—was telling us exactly what was going to happen. A gastroenterologist would go in that night at 8:30 to insert a stent to create an opening in my obstructed colon so that the waste trapped inside could flow out—an important step in preparing me for surgery to improve visibility and prevent postsurgical infection. If the gastroenterologist could not place the stent, then Dr. D.C. and his team would be standing by to operate immediately. If the stent worked, then I would spend the next day and a half going to the bathroom so my bowels could be cleared, to be followed by surgery. As I listened and watched Dr. D.C. draw a picture of a colon on the white sheet on my bed, I thought, Now this is how medicine is supposed to be practiced: dedicated surgeons immediately present and prepared to operate late into the night to treat a patient they’d not known of four hours earlier.
I was consumed by the discomfort and nausea, trying hard not to throw up because I had been told that if I did, a tube would be stuck down my nose and into my stomach to suck my stomach’s contents out, and I did not want that to happen. So all I could focus on were those parts of the conversation that dealt with the stent procedure and surgery; those were the only things that would give me physical relief.
But my husband was already thinking beyond that; he was thinking about the cancer itself and the future. I barely registered Josh’s questions to Dr. D.C. about whether he’d seen any evidence of metastases to other organs in the CT images we had brought from Garfield Medical Center. No, Dr. D.C. said. They wouldn’t know for sure until they went in, but he would guess I was probably Stage II or III. I was impatient at this line of conversation because all I wanted to do was get to the surgery, and that meant these men had to stop talking about cancer spread and staging and future treatments and if this and if that; none of that mattered right now; right now, I needed something to be done to relieve the nausea and pain.
Finally, Dr. D.C. left. Dr. O. presented me with some consent forms and told me about the risks of surgery, including something about the possibility that my bowels could not be put back in my body, in which case I would have an ostomy or colostomy or some other words that ended with “omy,” and I nodded like I understood, even though I had no idea what he was talking about, and quickly signed the forms. Now I know what all of those words mean, but it was better that I didn’t know back then. Soon, a cheerful Russian man in a green shirt came to wheel me to the procedure room. He was so happy, like everyone at that hospital, that I was convinced UCLA must pay its staff really well.
The stent was successfully placed that evening. When I woke from the hour-long procedure, I could feel the difference immediately. The release of pressure and pain was glorious. Sleep was elusive that night as I constantly and happily jumped out of bed and ran to the bathroom, dragging my IV pole behind me. Josh didn’t sleep much that night, either, partly because of my frequent bathroom trips and partly because the recliner that would be his bed for the next few nights was not so comfortable. He told me how he would never have thought when we got married nearly six years earlier that he would be so happy to hear me pooping not five feet away from him. I had to laugh.
By morning, my stomach had returned to its usual size and softness, and I was feeling completely normal again, stretching and doing yoga poses, like I could run a mile or two or three—after all, up until I became symptomatic, a month earlier, I had probably been in the best shape of my life. Josh noted how my skin had its old glow again; only with the return of the old glow did we realize, though, how waxy and gray my face had grown over the last couple weeks, a visible yet unrecognized sign of the toxic waste trapped inside, poisoning my body. With the return of bowel function and the accompanying sense of normalcy, it was hard to imagine that there was a raging, murderous tumor inside me. But there was. That morning, without the official biopsy results from the colonoscopy back yet, Dr. D.C. came to tell us that my CEA was 53, whereas a normal CEA is less than 5. If there had been any part of us that had hoped I did not have cancer, that hope was completely erased by this news.
My surgery took place the next afternoon, on Wednesday, July 10. It was supposed to take two and a half hours but ended up taking four. Dr. D.C. would discover that my colon had grown to the size of a football and was already beginning to rupture, that in fact the unnaturally swollen part of my colon had pressed itself against my stomach in an attempt to keep itself intact; he marveled that my body had been able to adapt and hold my colon together, for a rupture would have been disastrous, throwing waste, colon, and cancer cells everywhere. The surgery was successful as my entire tumor (measuring 3.5 by 3.9 centimeters) and sixty-eight lymph nodes (twelve of which would prove to be cancerous), as well as the single drop metastasis on my peritoneum, were removed. Because the surgery was performed laparoscopically, recovery was a walk in the park, with bowel function returning thirty-six hours later, and minimal pain.
Once the surgery was over and the immediate emergency resolved, I had a lot of time to lie, sit, and sometimes walk aimlessly about, looking at and listening to the world around me but seeing and hearing nothing. I was too preoccupied with the business of beginning the lengthy process of absorbing and coming to grips with what had happened, was happening, and would likely happen to me.
On the day before surgery, July 9, when for the first time in days we felt “settled” and knew what the immediate next steps were, Josh had the energy and time to write an email with the subject line “Julie” to family and friends, some of whom we hadn’t spoken to in years. The shock was immediate and total as family and friends called, texted, and emailed. I was morbidly curious to know how people reacted as they read the words, but I didn’t ask. Did they collapse in a chair? Did they start crying? What did they think? Were they sad for me and Josh? Were they secretly relieved this hadn’t happened to them? Were they afraid that it could?
Indeed, in addition to coming to terms with my own emotions, part of the acceptance process was absorbing and addressing the reactions of family and friends around me, sometimes allowing, but more often deflecting, their incredulity, horror, fears, sorrows, and hopes, sometimes permitting them to be my strength and comfort, and sometimes being theirs.
Of immediate concern to me was Josh. Rightly or wrongly, I’ve always felt that Josh is not as strong as I when it comes to handling life’s challenges; I’ve had more practice than he; I’m a woman, and I firmly believe women are generally emotionally more capable and res
ilient. To be fair to Josh, though, I think my illness is much harder on him than it is on me, because he is the one who faces the prospect of going on without me to raise our children and pick up the pieces as I go forth into my next adventure beyond this life. It’s always harder for the one left behind. But in those days after the surgery, I could not be his strength, certainly not nearly to the degree he needed. As he agonized and tried to find holes in the studies that offered the sobering statistics about Stage IV colon cancer, tried to spin the facts in the most favorable light possible (i.e., my relative youth, strength, access to the best medical care in the world, et cetera), he would drive me nuts. I would kick him out of my room to get breakfast at one of the many eateries in happening and trendy Santa Monica. I’d beg him to call his friends and family in New York and South Carolina, who were the foundation of his support system. I’d force him to go out for a beer with my brother or take our girls to the beach. I’d order him out in the evenings so he could go on solitary walks; exercise was important.
One night, he walked all the way to the pier, where he found an arcade with one of his favorite childhood games—Pac-Man. He played and he played until he had one quarter left. He made a deal then with himself, with God, with the forces of the universe in an attempt to peer into the future. If I break the record (a record set by someone else) with this last quarter, he told himself, then Julie will beat this cancer. He broke the record and came back to me giddy with excitement. So much for his steadfast belief in statistics…