Big C in the course work
6 a.m. June 26, 2007: I open my eyes to at least 15 faces within three feet of mine, staring at me expectantly. Everyone is calling my name. I find it frankly amusing. What’s up, everyone? Hi! Why are you asking ME what’s going on? I have no idea! And can I please go back to sleep? Yes, I know where I am, yes, I know my name, hi mom, why are you crying?
Joshua Lilienstein was supposed to be one of the people in the white coats, not the guy in the hospital gown. A near-death experience was not how he had intended to study medicine.
Back in April of 2006, Lilienstein was 26 and a month away from completing his first year at USC’s Keck School of Medicine. Then he discovered a hard, irregular-shaped bump in his right testicle. What followed would both test him and teach him to be a doctor.
The resident on duty that day in the family medicine clinic diagnosed MSD -- Medical Students’ Disease, a particularly virulent form of hypochondria. Undeterred, Lilienstein sought out a radiologist, whose own hypochondriac jokes sputtered to a stop when the ultrasound confirmed a tumor.
Within a week, Lilienstein underwent surgery at the USC/Norris Comprehensive Cancer Center to remove the cancerous testicle. Immediately after his final exams in early June, he had a second surgery at a San Francisco hospital to take out the lymph nodes behind the major organs in his abdomen.
For the next five months, he said, everything -- except for having cancer in the first place -- was “peachy.” Testicular cancer is, after all, highly curable when caught early, as his was.
By November of his second year of medical school, he was feeling so optimistic that he almost convinced himself that it was perfectly normal to develop a beer belly in just a few weeks. Then, at a six-month post-surgery checkup at USC/Norris, a CT scan detected tumors -- lots of them -- in his abdomen.
“And blammo,” he recounted in the first entry of the blog he began that month. “Suddenly everything, everything, everything, is up in the air.”
Day 1. Monday Nov. 13, 2006: [The cancer’s spread] places me in a not-too-euphemistically named “poor” prognosis category. The outcome for this group is maybe not much better than flipping a coin ...
EVEN in a class of 170 idealistic and committed medical students, Josh Lilienstein stood out.
As one of the few to enroll in a dual program leading to both a medical degree and a doctorate, he combined a doctor’s humanitarian wish to help others with a scientist’s analytic curiosity.
“He’s just naturally inclined to ask questions about what’s going on and why is this happening and what does this mean,” said Dr. Peter Katsufrakis, the outgoing dean of students at USC’s medical school.
The blog, www.jlilienstein.blogspot.com, said Katsufrakis, forced the aspiring physicians to think about whether they were ready for a career that would inevitably involve death and loss.
Judging from the comments, the blog prompted such reflections from an even wider circle of readers: “I want what you’ve got,” wrote a longtime family friend. “Not the cancer, just the attitude.”
In the meantime, Lilienstein took a medical leave from his studies.
He bypassed the standard chemotherapy treatment and opted for an experimental regimen that used higher doses of drugs over a longer period of time. He recalled his father saying, “We’ve gotta hit this thing hard, hit it out of the goddamn park.”
For the next 16 weeks, he would check into USC/Norris on a Monday to begin five days of what he called “life-giving poison.” He would check out on Friday and spend the next few days recovering at the Los Feliz apartment he shared with his girlfriend. Then he would check in for another five days of poison.
The drugs left him tired, then jittery, then tired again. One sentence on his blog -- “Must force myself to be social” -- spoke volumes about a man his own mother described as a party animal.
Nov. 23: i get told a lot that this experience will one day make me a better doctor, and i am even starting to believe it. all of a sudden i feel a lot of sympathy for old people. the similarities are stunning: constant dependence on others; discomfort that will not go away; feeling like there are things that i used to do that are no longer possible, that who i was no longer exists ...
BY mid-December, Lilienstein’s belly was shrinking and his tumor markers were falling, signs that the chemotherapy was working.
Still, the intensive treatment continued. The plan remained to “knock it out of the park,” even as cistoplatin -- the miracle drug that in 1973 transformed advanced testicular cancer from a death sentence to survivable -- attacked healthy cells along with the cancer cells.
Losing his hair was the least of it. His hands tingled. His ears screamed. He spent whole afternoons retching.
Dec. 15: suffering is highly overrated, my friends. i really think i could develop all the empathy i needed in life with about 24 hours of misery.... days on end is really overkill.
Christmas brought three weeks at his parents’ home in Palo Alto, where he was able to continue treatment at Stanford University Medical Center. He also found time for trips to the beach, walks in the woods with the family bluetick hound and a 12-hour “blowout house party.”
Josh’s father, Daniel, 52, a self-taught engineer who builds communication satellites, and mother, Cheryl, 56, a physical therapist and political activist, opened their Palo Alto house to so many of their son’s friends that it was easy to forget he’s an only child.
His illness brought his close family closer, especially when he ended a three-year relationship with his girlfriend. (“I have to remain positive and look ahead,” is all he wrote of that trauma.)
Cheryl Lilienstein put her work and life on hold to take care of her son during the debilitating chemotherapy. Her 24-hour presence opened the medical student’s eyes to the importance of a patient advocate to keep track of records and cover surprising gaps in care at even some of the nation’s best hospitals.
In another six months, he would learn just how crucial her presence would be.
Feb 7, 2007: I had a CT scan on Monday evening to see how things are going. The next day, a hapless resident, unfamiliar with my case, came into my room and announced the “good news!”: my tumor mass had reduced by more than 50%! It took a lot of self control not to punch him in the face, for this was not good news at all. I had been led to believe that these last two rounds of chemo were basically overkill, in order to be absolutely sure that every last minute speck of nastiness had been killed off. I had begun to plan a vacation, and my re-entry into real life ...
The scan, a more experienced physician later explained, most probably showed dead tumor masses. Lilienstein might need more surgery to remove them, but with 16 weeks of grueling chemotherapy over, he headed to Hawaii in March to celebrate spring break with his medical school classmates and to Lake Tahoe to reunite with old friends from his undergraduate years on the UC Berkeley ski team.
Still recovering from five months in and out of hospitals, Lilienstein found his skiing form not up to his usual standards. But “every burning turn, every winded pause, with trembling legs threatening to give out, was cause for celebration,” he wrote. “I spent the entire weekend with a stupid grin plastered across my face.”
March 26: There is still a bunch of gunk in there, some draped over the top of the liver, some in the center of the liver where all the lobes and the vessels come together, a big glob down at the base of the pelvis between my rectum and bladder and up around my large intestine, and maybe some little bits scattered around along the posterior body wall. It isn’t clear from the CT scan how much of it is necrotic tumor, already killed off by the chemo but not yet cleared from my body, and how much of it is live tumor or teratoma, which could hang out for years before becoming a problem. Everyone agrees, though, that it needs to come out. The surgery will be long, difficult, and there are many things that could go wrong. To list them all would be unnecessarily terrifying.
His situation, it turned out, was so unusual that doctors at both USC/Norris and Stanford were presenting it at Grand Rounds, weekly forums that analyze the most interesting clinical cases.
The masses in Lilienstein’s abdominal cavity were on his organs, not in them. Though no one could say for sure, doctors theorized that, in removing Lilienstein’s lymph nodes in June 2006, the San Francisco surgeon performing the laparoscopic surgery may have spilled cancerous lymphatic fluid into the abdominal cavity.
As a patient, Lilienstein was horrified -- and angry. But as a physician in training, he could imagine standing in the surgeon’s shoes.
March 26: Apparently, when the surgeon who performed the surgery found out, he was devastated.... My oncologist at USC/Norris told me that his goal was to get me through this so that I could write up the case report myself, which I agreed to ... providing that I have him, the Stanford oncologist, and the [San Francisco] surgeon as co-authors. Look out, JAMA [Journal of the American Medical Assn.]!
LILIENSTEIN “has two perspectives: patient and physician,” said Dr. Rachel Naomi Remen, a best-selling author and professor at the UC San Francisco School of Medicine. “He understands the struggle of his own physicians to save him.”
Even so, the road ahead was far from clear. To reach all of the masses, a surgeon would have to completely remove Lilienstein’s bladder and rectum. Even that would not guarantee that no cancer remained. At the same time, any surgery short of that would leave scars that would make screening and any future surgery more difficult.
His oncologist at USC/Norris recommended surveillance only. So Lilienstein was back in his Los Feliz apartment, trying to imagine a “normal” life.
April 5, 2007: I can just go back to my life?! Huh?! You mean I live in LA again? That all of a sudden, I am expected to be an adult again? To collect quarters for laundry, to cook for one, and to wash the lonely dish by hand? I sit in (what apparently is) my apartment, alone, and realize that this last 18 hours is the longest time that I have spent by myself in a year and a half. Who am I, after all of this? In this empty, quiet apartment, I hope to have the space to find out.
Within days, his oncologist called with unexpected test results. The tumor markers were rising again. The cancer was still there, and growing.
April 11: OK. Deep breath. Here we go again.
Lilienstein secured emergency consultations at Memorial Sloan Kettering Hospital in New York and at Indiana University, where cyclist Lance Armstrong was cured of his testicular cancer.
Surgery was once again a possibility, but both facilities first recommended intensive chemotherapy followed by a bone marrow stem cell transplant. Chemotherapy in high enough doses to kill persistent cancers also destroys bone marrow, which produces red and white blood cells that are integral to the body’s immune system. So stem cells are collected before the treatment and then replaced through an IV afterward to restore the marrow.
When setback followed setback, Lilienstein relied on his medical-student training to research options and weigh decisions. But key to surviving, he believed, was the robust support of his family and friends and his own determination to stay focused on living.
So on the weekend between the appointment in New York and the one in Indianapolis, he raced back across the country to San Francisco to be a groomsman at the wedding of Andrew Min, a pediatric intern and his best friend from high school.
Min was hugging well-wishers before the ceremony began when he came upon Lilienstein -- his hair still wispy from the last chemo -- and his parents.
“Josh has a slight flair for the dramatic,” Min said. “He was smiling like a million bucks.”
28 April: I find that I have to remind myself that just because life has taken a detour doesn’t mean I have to be stuck in a meaningless eddy. I want to suck this cancer dry for all it can teach me.
Lilienstein chose Indiana University for its reputation for curing testicular cancer and because renting an apartment would be less expensive in Indianapolis than in New York City.
The plan called for a three-week round of chemotherapy followed by the stem cell transplant. If all went well, he would have a week or so to recover. Then he’d do a second round and a second transplant.
With previous treatments, he had found that each round of chemotherapy somehow made the next one more bearable. He’d learned that he could survive the discomfort. But nothing prepared him for a dose four times stronger than what had come before.
During the first round of treatment, his feet felt numb, as though encased in cold water. The slightest noise made him wince; he couldn’t understand his own mother. When the print in the book he was reading blurred, he feared that the chemo-induced nerve damage that was shattering his hearing had begun to destroy his optic nerve. It turned out that a small blood vessel in an eye had burst, a routine occurrence that his body would have quickly repaired had the chemo not killed off so many of his platelets.
Lilienstein’s optimism faltered amid fears that the damage to his nerves and hearing would be permanent or that a future surgery would be even more debilitating.
June 14: I know that lots of people go through life much more incapacitated than I will be, no matter how bad side effects from chemo get, and no matter how extreme a surgery I may have to undergo. But contemplating someone else’s disability is different from thinking about my own. It turns out that not only is sympathy really not the same as empathy, but that being able to understand what it is like to be in someone else’s shoes doesn’t mean that I have figured out how to tie my own.
The key to managing pain, he learned without needing a textbook, was to keep it from spiraling out of control -- because once it did, medications could not easily rein it in.
The second round of chemotherapy brought blindingly painful abdominal cramps. On June 24, a Sunday evening, the pain drove him from his rented apartment back to the hospital. Curled up and shivering from pain and cold, he pushed the call button over and over in his search for relief. It took three hours for an intravenous pump to be set up to dispense a potent synthetic opiate, and more writhing and retching before an increased dose finally put him to sleep.
If not for his mother’s watchfulness, he may never have woken up.
Cheryl Lilienstein, who had finally fallen asleep in the double room’s extra bed, woke to a rattling sound. She jumped up to find her son’s eyes and mouth open, his chest still. He had been given too much fentanyl.
She yelled for help, and nurses and doctors piled into the room to revive him. Again, Lilienstein was able to see what had happened with two sets of eyes.
June 26: Pain management must be among the most difficult jobs a doctor has. How do you balance the patient’s awareness against their misery? How do you know you are not being scammed, when the patients themselves may not realize that they have become dependent? How do you not create an addiction while trying to help? And, by the way, careful not to OD anyone.
A week after his near-overdose, a CT scan brought shockingly good news. It showed no masses, no cancer, no need for further surgery.
But it will be weeks, maybe months, before Lilienstein recovers from the intensive treatment. Three months of low-dose “maintenance” chemotherapy lies ahead, a bulwark against what doctors describe as a less than 5% chance that cancer could return. But the bigger challenge will be getting over the anxiety that the next day, the next phone call, the next checkup could turn his world upside down again.
He is counting on the lessons learned to guide him as he heads back to Los Angeles in the fall to pick up where he left off in medical school.
“I very well may die of this,” he’d said in May, during lunch near his Los Feliz apartment.
“But how do I want to live? I want to live positively and with attention. A positive attitude and a fighting spirit is a way to improve the odds, but also a way to live in the process.”
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[Unpublished Note: The italics may not display depending upon the archiving system you are using.]
