In late October 2019, on a hot, dry, windy day that makes Californians think of earthquakes or wildfires, I fractured a toe. I had just finished a call with a Kaiser doctor who told me the results of the endoscopy Ed had that morning to find the cause of the last three days of hemorrhaging. In my haste to stand up and get on the road to Oakland, I smashed my bare foot into an unforgiving wooden leg of the chair by my desk. What I had just learned was that Ed’s loss of blood, which had necessitated two trips to the ER and an ambulance ride from Richmond to Kaiser Medical Center in Oakland, was due to four bleeding ulcers, one of which was growing out of a malignant lymphoma. The doctor who spoke to me was very kind and in a most unusual gesture, gave me her cell phone number and said I should call anytime with questions. Then, at least partially explaining the reason that an unknown doctor would give her personal phone number to a patient’s spouse—and so completely unexpected in that context—she added, “I’m a huge fan. I saw your husband when he sang at SFJAZZ last month.”
The pain in my middle toe flashing through my body told me it wasn’t something that would go away with mere icing. A couple of Tylenol dulled the throbbing long enough so I could drive to Oakland where Ed would be kept overnight for observation. His blood count was dangerously low, hovering close to the transfusion point, and he was severely anemic. But at least we were on the other side of not knowing.
Weeks later we had our first consultation with a bright young hematologist who would be the lead doctor on Ed’s cancer treatment team. From him we learned that the lymphoma was the slow-growing sort that probably had taken years to get to where it had just revealed itself. Treatable with radiation, but not curable, it would eventually grow back, but very slowly. And there was a second something, what they thought was a very small lymphoma growing outside his stomach. The two lymphomas were too far away from each other to treat at the same time. So the plan was to monitor the growth of the second one to be sure it was not growing too fast, before deciding what, if anything, to do about it.
When the doctor paused to answer our questions, Ed caught him by surprise, saying how his vision had become noticeably worse since the hemorrhaging and anemia. “Is there a connection?” he asked. The doctor, who calls himself the “blood man,” confidently said no. Hard to believe the “blood man” didn’t know that eyes need an adequate supply of blood to stay healthy. A few days later, Ed’s ophthalmologist confirmed that the lack of blood and oxygen to his one remaining eye that still had vision had irreparably damaged the optic nerve and destabilized his glaucoma, leading to the worsening vision he was experiencing.
Behind the double doors labeled “Radiation Oncology” is a world that exists to save people’s lives by destroying what is killing them. It is buried in the depths of one of Kaiser’s buildings on Broadway, with valet service on the lower level of the garage where cancer patients can park for free. We always hoped the especially-friendly valet would be there, sitting on a folding chair and reading in the winter chill of the garage. Ahmed, in his late fifties, was from Iraq. Who knows what sort of work he did in his home country. I thought maybe he had been a professional of some kind but had not been able to get a reciprocal license or certification here in the States to work at whatever it was he did in his home country. When he saw our car coming down the long ramp, he’d rush into Radiation Oncology to get a wheelchair and then insist on personally taking Ed into the reception room.
The department is a self-contained world. On the first day, we were introduced to the nurse oncologists, radiation technicians, radiation oncologist, and oncology social worker, and given a tour of the department—the nook where you can get free coffee, tea or water, the built-in wall cabinets where you get your gown (top or bottom, depending on the area to be radiated), the dressing rooms, the bank of lockers where you store your belongings, the neighboring waiting rooms, one for women, one for men. In addition to the fortified rooms where radiation treatment is done, there is a large area with beds and medical equipment staffed by nurse oncologists who attend to whatever immediate physical issues might come up for patients. One of the walls on the outer perimeter of the department is lined with small offices where patients meet with their radiation oncologist once a week to assess how treatment is going. In that environment, patients become part of an unexpected though temporary close-knit family, where the unspoken camaraderie of most other patients is palpable, and staff—always welcoming and encouraging—know you by name.
Ed’s radiation doctor was a tall, attractive, rather young woman who, after Ed introduced me with his usual, “We’ve been together 50 years,” asked what it was like being a racially-mixed couple 50 years ago. I didn’t think she was just making small talk. From her hyphenated name, we thought she might also be in a similar type of relationship and seemed to have more than a passing interest. During the two weeks she was on vacation over the holidays, the doctor who filled in for her was stiff and unfriendly, like he couldn’t care less. I always wonder if doctors who are so detached and disinterested really are such awful human beings to be around when you’re gravely ill, or if they keep their distance to keep the fear and suffering of their cancer patients from overwhelming them.
Ed’s treatment began on December 23. The first session was a practice run that involved only a CT scan to identify the exact location of the lymphoma. They drew six bullseye-type tattoos that looked like fancy bar codes on his stomach so the linear accelerator could zero in on them and, over time, slowly zap the lymphoma. Then he had 20 sessions of radiation therapy five days a week.
In the waiting room, patients always introduced themselves with what, to them, was their most important identifying information—even more so than their name—how many treatments they’d had and how many they had to go.
Women in gowns from the waist up were generally there for breast cancer. Men undressed from the waist down were generally there for prostate cancer. Once in a while, it was something else. To the fully dressed woman in the waiting room someone said, rather unthinkingly, “Lucky you, not having to get undressed. What are you here for?”
Brain tumor… Oh, not so lucky.
What cancer is the lucky kind? The rare curable kind.
People always wanted to tell their stories. During the first week, I talked to a 44-year old mother of two who had continued to work as a communications specialist at Children’s Hospital while enduring alternating rounds of chemo (“it’s awful, but you get through it,” she assured an anxious beginner), radiation, double mastectomy, reconstruction, and more radiation. I met her on her last day of treatment, of all treatment. I asked how it had been. “Not bad, considering. Just starting to feel a little burned after 30 sessions,” she said, indicating an angry-looking red splotch below her armpit. She wondered aloud how, after an 8-month saga, it would feel the next day. “It’ll be so strange to be cut loose, on my own, not having to come here every day. All of a sudden!”
One day, I was sitting next to a Filipina in her sixties. She talked freely about herself, including how relieved both she and her husband were that the incision scar on her breast from the lumpectomy was tiny enough to prevent disfigurement. Then, without a trace of self-consciousness, she lifted one side of her gown away from her breast so that I—along with anyone passing by, since the waiting rooms are open on both ends—could appreciate the surgeon’s dainty handiwork for myself.
Advancing age is the main risk factor for cancer. More than three-fourths of new cancer diagnoses are in people 55 and older. But what was mainly a disease of the old is now a disease of anyone. On Ed’s first treatment day, I saw a beautiful little Afghan girl of maybe six or seven whose hairless head was wrapped in an exquisite silk scarf. She walked down the hallway towards her treatment room, brave with the love of parents who walked alongside her, who protected her until the moment she had to let go of their hands and walk into the treatment room all by herself. I imagined that the radiation techs loved her and took special care of her, positioning her small body on the table, then rechecking and readjusting her, just so. They’d remind her that after the treatment they wanted to hear the latest stories she’d imagined about the whimsical images painted on the ceiling. And then they would leave the room as the linear accelerator beamed rays into the site of the tumor.
There were so many young people in those waiting rooms. One of them, a man in his late 30’s, recounted having had both IV and oral chemo, along with radiation. “IV chemo was the worst and the anti-nausea pills didn’t really work.” One of the nurse oncologists had told him to try marijuana. He laughed tiredly. “I’ve never been into pot, but it sure worked.”
The bulletin board was stuffed with flyers filled with information about myriad groups in the broad cancer support network. There were the traditional American Cancer Society offerings, and then the others: “I’m Too Young for This.org: a place for young adults affected by cancer” and “stupid cancer dot org—got cancer under 40? Sucks, huh?” And there were lists of chapters, local events, online forums, and boot camps.
About 15 years before, at age 75, Ed had five or six weeks of radiation for prostate cancer. Though fatigue is one of the main side effects, he had sailed through it effortlessly, missed no work and, once it was over, started to sing again right away. Not so this time. At 90, he was exhausted by the end of the fourth treatment and climbed out of bed only to get in the car for the drive to Oakland. It was a struggle for him to eat enough so that he wouldn’t lose any more weight than he already had in the past year. We lost that battle, mostly because he had to fast for three hours before each treatment which wrecked a normal day’s meal schedule. He continued to lose weight, even with frequent stops after his treatment at IHOP for a short stack of calorie-rich pancakes smothered in butter and syrup. Trouble was, we’d get there by 4 in the afternoon—a very late lunch? A very early dinner? Or, more likely, no dinner because a couple of hours later, he’d often be asleep. Ed finally understood how unrealistic it would be to go through with his scheduled 91st birthday concert just 10 days following the last treatment, and changed it to a date in late March. That was smart, because it took a full two months for him to recover from that radiation journey. Once his energy returned, so did his desire to get back to rehearsals and Pilates, but that was short-lived. Two weeks later, we were sheltering-in-place in a worldwide pandemic.
Ed’s radiation oncology doctor always took a little extra time to listen to him talk about singing and teaching. A few weeks ago, she sent an email saying that his follow-up PET scan “looks great, normal with no evidence of abnormal activity.” When we asked about the other one, the small untreated lymphoma, she said whatever it was, it had just disappeared. And then added, “I think of you both and hope you're hanging in there and staying safe. I'm sorry I never got to see Ed perform.”
That was the beginning. The rest is another story.