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."