My Highwire Year at the Bill & Melinda Gates Foundation
To make it through each day in a demanding new job, I couldn’t talk about the crisis unfolding at home.
It’s a beautiful May night on San Juan Island in NW Washington State, and I’m there alone with two dogs, my husband gone on another adventure expedition. My oldest sister Barbara has sent me an email, “Fran is frantic. Call me.”
We’d all gathered the weekend before in Portland for my mother’s 89th birthday. It was the third time my seven older siblings — five brothers and two sisters — and I had been together with Mom at her Oregon home within the previous year. We’re all close to her and no one wants to miss her final party.
I have no idea my why my sister Fran is frantic or what Barb is talking about so I give her a call. Barb is living in Seattle, and while she and Fran are on good terms, they’re not especially close, a combination of wildly different temperaments and too close quarters growing up.
Barb tells me Fran has been diagnosed with melanoma. Immediately, I ask what stage.
Our father had melanoma when I was five, which put him out of work for two years and left him with deep surgical scars and a loan he was still paying off 20 years later. Still, we were lucky and he survived.
“The doctor thinks it’s Stage IV. They didn’t find the primary source.”
While Fran was still at Mom’s house, her dermatologist in Reno had called saying, “We’ve found something. You need to come home immediately and come directly to my office.”
The doctor then confirmed that a small growth Fran had asked to have taken off just before flying to Portland for Mom’s big day was positive for melanoma. Just a few weeks earlier, Fran, who was 56 then, had had a complete skin check for melanoma with no alarms raised. With our father’s history, we are all careful.
I call my brothers one-by-one to give them the news. My brother Bruce bursts into tears that I can feel through the phone. We don’t know what the treatment options are, but we all understand things are grim.
I send mail to my girlfriends to tell them what’s happening. We’d forged a bond early in our careers and by now, we’ve known each other almost 20 years, through work struggles and triumphs, divorces and remarriages, job changes and kid and parent crises. One friend recently lost a brother to suicide.
Just as I send my mail, a different email comes in. It’s from the CEO of the Bill & Melinda Gates Foundation, asking if I might be interested in a role helping Bill and Melinda with their ongoing communications. By that time, I’d worked in senior business and communication roles for years, both at Microsoft and beyond, including having worked closely with Melinda several years before.
I can’t really process the work message, except to say that I need to figure out a personal situation and don’t want to make any fast decisions.
That weekend, Barbara, Fran and I meet in San Francisco where Fran will see doctors at the University of California San Francisco (UCSF) medical center. We walk to dinner near Chinatown. We don’t know enough to make plans, and we’re mostly caught up after Mom’s party, so Barb and I take Fran’s lead and act like tourists on a weekend jaunt.
The next morning, the UCSF medical team takes us all into an exam room. The doctors examine Fran while Barb and I are in the room. By that time, small black pencil-dot sized specks have started appearing on Fran’s abdomen and legs. The doctors have never seen anything like it and they’re fascinated. They radiate curiosity.
Having recently retired early as a City of Reno employee, Fran has a gold-plated health care plan. Basically there are no limits on her coverage. The doctors at UCSF want her there.
Barbara and I talk about it. There is no question about Fran staying in Reno if she wants aggressive treatment; Reno doesn’t have the facilities. But San Francisco will be tough. None of us live there and staying in hotels during treatment would be both expensive and stressful.
Barbara and I are close, though she’s twelve years older than me. I’m living on San Juan Island with my then husband Mike, and Barbara is living in an eastside Seattle suburb with her two daughters, now teens. Mike and I will move back to Seattle, and between us, Barbara and I will steward Fran through her care. Seattle has world class cancer-care facilities including the Cancer Care Alliance, which bridges the University of Washington, Seattle Children’s, and the Fred Hutchinson Cancer Center, where stem cell treatments were pioneered.
At the time of her diagnosis, Fran is divorced and has three adult children. Her son Christopher has brain damage and as a young adult, has the mental capacity of a child and can’t live independently, so part of the equation is making sure that while Fran gets treatment, she’s also available to her kids in Reno, and especially Christopher and the two young, greatly adored grandchildren who live with Fran and their mother Mary. Soon, it’s decided: Fran will live in Reno and come to Seattle for treatments and care as needed.
I decide to take the Gates Foundation job. Ultimately, my agreement with my bosses is that I’ll work hard but take whatever time is needed to help Fran. At the time, Bill is still CEO at Microsoft and Melinda is raising their three young children, so while I’ll manage a team, most of my work with Bill and Melinda will be done over email.
When Fran’s in town, she’s my priority. When she’s back in Reno, I dive into work at the Gates Foundation, which will consume every hour I can give.
My husband chooses a huge old house in Seattle’s Mt. Baker neighborhood and kicks off a reconstruction project that will take a year. We’ll live in the basement with Emma and Frank, our two English Springer Spaniels. I want something smaller, something finished, but for reasons I’m not yet ready to explore, I don’t want to insist on what I need.
On weekends, I escape back to San Juan Island, where it’s quiet and peaceful and I feel surrounded and embraced by close friends. I tell them stories about work and Fran while my marriage quietly bleeds.
That Fall, Barb and I accompany Fran to every one of her appointments. We ask tough questions, which she wants us to do. Sometimes she even listens.
By late September, Fran’s melanoma is in so many places and has spread so far that the only distant hope is a treatment to stimulate her immune system. The basic idea is that they’ll bring Fran to the brink of death, with the hope that her immune system will then kick in to ward off the cancer. I know the odds are long, but don’t know then that nowhere in the world has anyone with melanoma spread as aggressively as Fran’s survived. Still, she wants to try. And the doctors want her to try because her case is interesting, she has great insurance, and she wants a miracle.
The first round of treatment is grueling. Five days at the UW Medical Center where she’s in the equivalent of intensive care, essentially quarantined, while they give her a drug that makes her progressively sicker, until her immune system can come alive. Treatment wise, we are on the edge of the edge. Fran makes it through the first treatment, and returns to Reno.
As Fall moves toward Winter, the remodeling project has grown. By late October, I’m coming home most nights to a dark cold house. One night I come home to find all the windows open and the power turned off. I crawl down dark stairs to the basement and climb into bed, as Emma and Frank whimper in the darkness. The neighbors across the street tell us much later that through the Winter and into Spring they never realized we actually moved in.
At work, I choose not to talk about Fran. I’ve got a lot on my plate, and it’s easier to just plow through and get done what needs to get done. The long hours also make it easier to avoid thinking about the bigger mess at home. Having grown up in a chaotic household, I thrive on mental focus. I’m used to getting lost in the flow of a work challenge.
The protocol calls for a second treatment a few weeks later. Fran returns and starts the treatment again, but within the first two days, treatment has to be stopped because her blood pressure has dropped to a critical point, and she can’t survive more. With nothing more anyone can do to cure her, Fran flies back to Reno, feeling frustrated that the doctors haven’t somehow tried harder.
Her Seattle doctors want to keep seeing her, but the focus has shifted. We’re beyond even experimental treatments. The focus now is on care to help her live longer more comfortably. I’m not sure what that means.
A few weeks later, Fran calls me and says she’s just seen a new doctor down in Reno. I’m in the basement alone with the dogs, watching something on TV and it takes just a few seconds to switch gears. Fran, seeing a new doctor in Reno? What don’t I know?
I listen while she talks. She’d felt a growth and wanted a doctor to check it out, so she chose a doctor seemingly at random and booked an appointment. He examines her, runs some tests, and meets her back in his office.
She tells me he seemed very upset. “I hate to tell you this. You have melanoma and it seems very advanced.”
I’m quiet while she talks, taking it all in. Fran is hoping a new doctor will tell her it’s all been a mistake. I think about the doctor, and the stress he must feel delivering such bad news. And yet his stress is nothing compared to hers, hoping for her miracle.
Before I can think of what to say, Fran laughs with just a hint of defensiveness, “I told him I knew THAT. I just wanted to know what the lump was.”
We chat a bit longer, and I hang up the phone to call Barb. On this journey, she is my lifeline and I am hers. We often need to talk after spending time with Fran or even just talking to her on the phone.
Outwardly, Fran has been calm. When the doctors suggest to her that she might want anti-anxiety medication, she assures them she doesn’t need it. Fran equates drugs with weakness. Barb and I have no such qualms and we both joke in a not-quite -joking way that we will use Fran’s anxiety meds if she doesn’t, but Fran is clear. No unnecessary drugs.
And yet, when Fran comes up to Seattle for treatment and stays with Barb, she smokes like a chimney while Barb is at work. The after smell is driving Barb crazy so we talk about whether it’s worse for Barb and her teen girls to put up with Fran’s smoking and not say anything, or raise it and potentially take away the one outlet Fran can rely on to sooth her anxious, racing mind. Because we both know Fran is dying, we also know it isn’t going to be a long-term problem. Barb and I agree Barb can complain about the smoking to me but not to Fran.
Outwardly, I hold it together. During the day when I’m at work, Emma and Franklin go hiking for two hours a day with a woman from the neighborhood who sculpts and wants to earn extra cash. At night, we cuddle and I’m grateful for their warmth and fatigue. One day, I notice a growth on Frank’s face. The only vet who can see him on short notice tells me that she thinks the growth is cancer and it’s likely terminal. He’s only seven years old and I fall apart. For three days, I can’t bring myself to make it into work. I’m strong for my sister, but when Franklin, a mess of a dog when he first came into our lives, is found to be dying, I can’t pick up the pieces. My husband insists the vet is mistaken, and to my amazement, she is. A week later, Franklin is back to normal, and I’m back in control.
In December, Fran comes up to Seattle for a new round of tests, including a brain scan, and then returns to Reno. Meanwhile, I’m working on a stealth project at work.
A few weeks earlier, TIME magazine approached the foundation’s CEO to say they wanted to shadow Bill and Melinda as they went about their work. I’ve worked with media over decades so I knew what that likely meant. In late 2005, the TIME Person of the Year story is still a very big deal, and a big feature story timed for December likely means Bill and Melinda are being considered for the year-end cover story.
To that point, Melinda’s profile has been pretty low-key, but I know how important Melinda’s role at the foundation is, and also that it will be good for the foundation’s work if others, especially grantees and partners in the global health work who live all over the world, know it as well.
My job is to help the TIME reporters, both named Amanda, tell a compelling story by getting them all the background information they need, while making sure they’ve got opportunities to observe firsthand how Bill and Melinda actually work. Ultimately, the best thing I can do is help ensure that the journalists have enough access to see things just as they are.
For weeks, the rhythm of my interactions with the two key women reporters at TIME is that they will ask for information or ask me to fact check information they have, and I will handle it promptly and quietly, however I can. It’s not always easy. If the Amandas ask for more access to Bill and Melinda, I will work hard to ensure they get it. If Bill and Melinda know or suspect what might be afoot, I don’t know as I don’t discuss it with them.
At one point, one of the Amandas calls me to say that after seeing Bill and Melinda in a meeting together, she’s unsure of Melinda’s role, which likely means that if a cover story happens, Bill will be on it and Melinda will not. I know how foundation meetings typically go, with everyone focused on Bill, who at the time is one of the most famous people in the world. The part of me that’s worked with Melinda over years, including once having reported to her in a business role while she was running a large product group at Microsoft, wants Time’s readers to understand her role in building out their philanthropic work. I know that Bill and Melinda have a foundation trip scheduled soon overseas, and so I ask Amanda if she wants to go, knowing that I’ll need to deflect the internal questions and curiosity that arise when a TIME reporter is suddenly added to a foundation research and learning trip at the last minute.
— — —
In early December, I’m in New York on other foundation business when I get a call from Barb. The results of the brain scan are in and Fran now has seven lesions in her brain. I break down crying, call my boss, and say I need to come home.
The Gates travel managers go into overdrive arranging for my flight.
For decades, I’ve called Mom twice a week, from wherever I am. An accident while I was still in high school left her with a shattered knee she never fully rehabbed and so I always knew that wherever I was, Mom was almost certainly in the den in her chair. We’d talk about everything and everyone, including news from around the world. We also shared books regularly.
Before she married at 31, Mom worked at an accounting firm and she loved the world of business. Our house was often in turmoil but always full of great reading and the latest magazines, including TIME, Newsweek, BusinessWeek and Fortune, all because of Mom’s lively curiosity. I first heard the words “Oprah” and “Costco” from Mom.
Over the years, she delighted in tales about Microsoft, Bill Gates, and later the software company I helped start with my husband and his partner, which by then had become a major success. Mom loved going to Costco and seeing our company’s software on the shelves. If she didn’t see it, she’d ask. It made me laugh to think of my aging mother quizzing the Costco staff about the consumer software they stocked.
Mom had a close, but different connection with each of her kids. She bought clothes and kept treats for her grandkids, asked about everyone’s dogs, and worried when she thought any of her kids’ jobs were at risk. Fran adored her and often said she wanted to move back to Portland and buy the house next door.
But toward the end of the year, Mom is clearly showing early signs of what will become full blown dementia. A year earlier, she had read Barack Obama’s first book and we discussed it at length. Yet, when Fran was diagnosed in May, Mom said to me, “this is very bad” and then rarely talked about Fran’s illness again. I can feel her slipping away. I know Fran can too. When we’re alone together, Fran talks about her loneliness and disappointment because Mom isn’t really there for her. My heart aches. For Fran. For me.
— — — — — — — — — — — —
In Seattle in mid-December, I meet Barbara and Fran at the doctor’s office. They recommend a laser procedure to directly attack the lesions in her brain. Fran wants it done, although the upside eludes me. I meet Fran at the hospital and spend the day with her while the doctors laser her brain. She returns home to Reno, and I spend a quiet Christmas with my husband and the pups on San Juan Island.
In late December, TIME announces that Bill and Melinda have been named Persons of the Year alongside Bono, who’s being honored for the work he’s done to reduce the debt of impoverished nations. My phone turns quiet and New Year’s is calm.
For legal reasons related to Christopher’s care, it’s important that Fran have a will in place and yet I know Fran hasn’t yet done anything yet to make it happen. Time is running out. In early January, and with Fran’s support, I push Fran’s doctor to help us understand how much time she has left. Christopher needs for his Mom to get things squared away. The doctor checks with Fran to make sure she wants to hear, and then tells her that most patients with such advanced melanoma live only three months.
We decide to have a party, an idea Fran loves, and so in late February, I arrange for Mom’s kids to gather down in Reno at Fran’s favorite Irish pub. Our spouses and Fran’s friends from the neighborhood and from her work join us. A cousin Fran had never met flies out from Boston to show his support.
To the casual observer, it’s just a fun party. We’re laughing, telling stories, most of them light, some of them dark, while the elephant dances in the room. Before we leave, Fran’s dermatologist who has continued to track Fran’s care and treats her as a friend, pulls Barbara and me aside and tells us we need to get her into hospice care ASAP. I look over at Fran, visiting and chatting easily. It feels surreal.
At an all-you-can-eat seafood buffet that weekend, my brother Bruce, slipping into patterns from childhood, calls Fran out for taking too many crab legs.
“Really Bruce? You’re telling me I can’t have any more crab?”
We all laugh but I feel my stomach tense.
Two weeks later, Barb, who’d just been down to see Fran, calls me to tell me I need to get down to Reno ASAP. I’m once again putting in long hours, planning for a huge meeting, and managing the ongoing flow of communications that swirl in Bill and Melinda’s orbit.
I tell my boss I need to leave and don’t know when I’ll be back.
Then I call Fran, who sounds as though she’s slipping into a dark well. “It’s happening so soon…I love you” are the last words I hear her speak. By the time I board a flight later that day and make it to her house, she’s slipped into a coma.
For almost a week, I sleep by Fran’s side, give her pain medication, and moisten her lips. My husband comes down and takes me to breakfast each day. He stays elsewhere so I can give Fran my full attention. At some point, he returns to Seattle. He has work and we have dogs, and the rest of life doesn’t stop.
Each day, a hospice nurse stops by, checks Fran out and tells me what to expect. I will know what’s happening by watching her feet. She also warns me that Fran will need to turn inward to take care of herself as she goes through this process. It isn’t going to be a Hollywood ending.
The hospice nurse is right. As the days go by, I watch over Fran as she retreats into herself. It feels like she’s curling inward and slipping beyond my reach. Her breathing gets raspier but the nurse assures me she’s in no pain. With the exception of breakfasts out, I’ve been with her round the clock. One day, when I step out of the room for just a few minutes, she slips over the line and is gone. The hospice nurse comes by to pick up Fran’s medications and tell me how to navigate the steps for her cremation.
After her death, Fran’s ex-husband and the father of her kids, comes by. Fran isn’t religious, and she made clear it would be much more fun for her to be at her own party than to have us wait and gather without her after she’s gone. Getting together so soon in a more mournful tone doesn’t feel right.
Fran’s girls have their father, and because Fran’s will is in order, Christopher will be able to stay in the group home where he’s grown comfortable.
It’s time for me to go home, back to my life, and back to work. I’m not yet ready to face the cracks in my marriage, but there’s a big meeting to plan, and Barb and I need to talk about Mom.
