“I’ve integrated it into my life,” says Bridget, “and I think I can keep it up for a long time, but I hate when people use the word chronic or compare it to diabetes. It’s not like that, where you can find a baseline and maintain it. This is periods of Hey, it’s okay and then fever-pitch emotion—this foreign thing is growing in you. I beg them to find some way to buy me another eighteen months, and somehow they do, and then we start all over again. I’ve managed to find a purpose in it, but I hurt for Alex. Who would choose this?”
Alex’s answer to that question: “You don’t choose who you can’t live without.”
The nodes were removed, and Bridget finished chemo just before the wedding. The two enjoyed an idyllic honeymoon and two months of wedded bliss—then another diagnosis, followed by a mastectomy. Bridget and Alex have accepted that cancer treatment is always going to be part of their life, but for the moment, Bridget is cancer-free. And for them, the moment is all that matters.
She doesn’t dream of the Foreign Service anymore; the life she’s fighting for is centered here at home. More than anything, she wants to have children with Alex and be there with him to see them grow up. She thinks about writing a book. She thinks about turning forty. She’s no longer banking on the fairy-tale ending, but she has a great deal of faith that new, better treatments will continue to come along as she needs them. Meanwhile, she helps others cope with the specific challenges of being a young cancer survivor and works for us as a coach, facilitating participants in the Susan G. Komen 3-Day events. Having found her purpose, she’s determined to keep putting one foot in front of the other.
Bridget Mooney Spence was born two months before the very first Race for the Cure event in 1983. When she was in high school, she helped us provide funding for self-exam education, awareness, and the clinical trials that brought monoclonal antibody therapies into common use. Herceptin was made available to her just in the nick of time. Bridget considers herself incredibly lucky; each setback has occurred in the shadow of a hard-won advance. This remarkable young woman has been literally one step ahead of the disease her entire life.
I am desperate to keep up with her.
∼ 14 ∼
Purpose in Perspective
The morning after my mastectomy, an orderly stopped in to tell me a woman from Reach to Recovery was on her way up to greet me.
“Tell her if she does, I’ll throw her ass out along with the damn falsies.”
I wasn’t in the mood to reach for recovery that day. Nothing against it—it’s been a wonderful program for a lot of years, a trailblazer, God love them. But there’s this idea floating around that people with cancer are obligated to be plucky about it. We’re told to spackle on that positive attitude like television makeup, and here again I had to wonder, for whose benefit would I be doing that? The person who’s patting my hand and telling me not to be upset? Why shouldn’t I be upset? Moments like this are why God created upset.
Betty Ford was one of the first people to call me when this snowball started rolling downhill, and she gave me some very good advice.
“Take a day to cry. Get angry. Throw a tantrum. Feel terrible for yourself. Get it all out of your system, then get over it. Get on with it. Get through it.” She mulled that for a moment, then pragmatically added, “You don’t have to do it all in one calendar day. You could do it an hour at a time and spread it out over a few weeks.”
She also warned me about lymphedema in my arm on the side where sentinel nodes (the lymph nodes closest to a malignant tumor) had been removed and talked to me about some of the other strange little nuts and bolts of the situation. Instead of telling me how I should feel, she shared with me what she’d felt, which reassured me that I wasn’t going crazy. There was a strange burning over the front of my body—not the deep agony you’d expect when you’re cringing at the thought of this surgery and certainly nothing like women must have endured after the old Halsted procedures—but the swarming sensation was insanely unpleasant.
Mostly, I was aching with inactivity and bristling at everyone hovering and scolding. I had things to do, a son to take care of, a flourishing foundation to build. We’d had a few successful events and were preparing for our second big luncheon, expecting seven or eight hundred people. Betty was presenting the award we’d named for her.
“Would it be all right if I bring my husband?” she’d asked.
It was all right, all right. We were thrilled! But adding President Ford to the head table took both expectations and logistics to a whole new level.
“I don’t have time for cancer,” I told Norm.
The first moment I was alone, I gingerly pulled on a robe, nipped my Sony Walkman out of my bag, and sneaked past the nurses’ station to the stairway. I found my way to the physical therapy room where Suzy and I had spent hours gently working her wasting muscles and talking with other patients, particularly the children, who always loved Suzy and flocked to her the moment she showed up at the door.
Looking around the room, it seemed as if the very same people were there, trudging on treadmills and pedaling on stationary bikes, bald, bored, hollow eyed. A little boy who was maybe three or four years old bounced a ball against the wall while his mother spoke earnestly with the therapist nearby. His arms were spindle-thin, his little face lost and forlorn. I felt the nudge of Suzy’s elbow.
“Hi there,” I said.
“Hi!” He looked up and grinned, ready to play if anyone else was.
“Having fun today?”
He shook his head, then shrugged. “Do you want to play ball?”
“I wish I could. My arm feels kind of funny today.” I touched the soft wisp of downy hair trying to grow back on top of his head. “We should be outside playing. It doesn’t seem fair, does it?”
“We could go to the park,” he volunteered hopefully.
“Another day. There will be lots of days at the park. You’ll see. Today … do you want to listen to my music?”
He nodded enthusiastically. I handed him my Walkman and set the headphones over his ears. He waved brightly on his way out the door, and I waved back, hissing a little when I felt a corresponding burn. I climbed onto a stationary bike, settling into the new lopsided me, and managed to pedal a few miles before a nurse—the one Mommy called “Nurse Ratched” after the nurse from hell in One Flew Over the Cuckoo’s Nest—found me and scolded me back to my room.
That sort of thing was very quickly making me crazy. I wasn’t used to getting bossed around, and I didn’t take it well. It chafed like sandpaper with the reeling lack of control I was already feeling. I’d have to accept that I couldn’t wrangle my errant cells or mandate the future, but I needed to be allowed to call the shots. This was my body, and I’d gone to a lot of trouble to educate myself about this very situation. I needed my caregiving team to respect my decisions.
“I need to be on that bike every day,” I told Norman. “I also need another Walkman. In fact, I need a dozen so I can give them to people.”
The next day Blumenschein returned from his ski trip, thank God.
Straight talk ensued.
“I think you’re in a good situation,” he said. “There was no node involvement and your tumor was still small. I feel very optimistic about your case.”
“George, I need to know I won’t be … like Suzy.”
“The first time I saw Suzy, it was a very different picture. You’re nowhere near that place, and my goal is to keep you from getting there. I’m recommending that we treat this very aggressively for a number of reasons.” He keyed them off on his fingers. “One: your age. As a rule, the younger the patient, the more aggressive the cancer. Statistically, thirty-seven is young to be diagnosed with cancer, and while your tumor wasn’t wildly aggressive, it showed signs of being on the side of rapid growth. Two: Your hormone receptor assay was negative. Let’s consider all our options and form an adjuvant therapy plan. Three: Your family history with the disease. That’s paramount, Nancy. This is the same type of can
cer Suzy had. We don’t fully understand that genetic connection yet, but clearly it’s cause for concern.”
“Tell me about it,” I said wryly. “From what I saw on the test results, I’m guessing my odds for long-term survival are about 85 percent. Would you agree with that?”
“I would. We can kick that up to 95 percent with chemotherapy. I’m recommending four cycles, starting as soon as the incision heals. Adria, Cytoxan, and 5-FU.”
“The Adriamycin …” I tried to say it without wincing. “Is it still with the, um …”
“The subclavian catheter and pump.” He nodded. “But there’s been some improvement to it since Suzy had hers, and we’re doing a better job with patient education on it. You’ll take a class and learn everything you need to know so you can safely administer the drug to yourself outside the hospital. I know mobility is going to be important to you.”
“So is staying alive.”
Looking away from the sun streaks on the windowsill, I studied the ring on my finger, a get-well card Eric had drawn and taped to the wall, flowers from my parents on the nightstand. I thought about Suzy as she endured the ravages of chemotherapy. More than once I’d thought, I would never choose to put myself through such torture. For such a slim chance at survival … how can she do this to herself?
Now I knew how. Turns out it’s not all that hard. The choice looked a lot less murky from my new perspective.
“I’ll take the chemo,” I said. “For a 10 percent boost … it’s worth it.”
A lot of people disagreed. To this day, people want to lecture me about it, and at the time, it seemed like everyone I knew in the cancer community felt entitled to render their opinion on my case. Going to board meetings, seminars, and symposiums over the next few months, I felt like a bug under a magnifying glass.
My amazing friend, Rose Kushner, was small and bony with a voice like a rusty trumpet. A pioneer. A tigress. She was out there irritating people and making them listen a long time before I came along. When Rose was diagnosed with breast cancer in 1974, she had to fight that old surgery roulette system. She went through nineteen surgeons before she found one willing to do the biopsy without the automatic mastectomy. When the biopsy came back malignant, she had to fight for a modified mastectomy instead of the Halsted radical that was still standard fare in a lot of places. And she kept fighting.
When Betty Ford was diagnosed, Rose bulldozed her way in as far as the presidential press secretary, trying to get word to Betty about modified mastectomies being done in Europe. In 1976, she was the first person to testify about breast cancer before the Senate Subcommittee on Health, and she took the opportunity to denounce the Halsted mastectomy and the single-step biopsy-mastectomy procedure, in which you went to sleep not knowing if you’d wake up with a breast.
She established the Breast Cancer Advisory Center in Maryland and was on the National Cancer Advisory Board, and by the time we met, she had a great, scrappy advocacy group she was trying to get fueled up. She instantly recognized me as someone who was annoyingly good at getting things fueled up; I instantly recognized her as a great woman who stood on the spirit of her convictions. We became fast friends, perhaps because we were very different but still had great respect for each other.
For all the reasons I was mobilized—radicalized, some would say—after Suzy’s death, Rose was in there duking it out with anyone and everyone. She had strong opinions and didn’t hesitate to voice them. Coming out of a contentious meeting, during which a battle had raged about clinical research versus basic research and the construction of clinical trials, Rose asked me about my treatment plans, and I told her.
“Nancy, chemo? That’s crazy,” she bluntly told me. “You’re letting your fear rule.”
“Yes, I am. But not the way you think, Rose. The more I learn about this, the more I wonder, if everything that could have been done for Suzy had been done, would she still be alive? Do you have any idea how bitter it is to live without an answer to that question? Imagine how it feels for my mother—the quintessential patient advocate—to live with the knowledge that one mistake after another was made, and that probably cost Suzy her life. This choice wasn’t available to Suzy until it was too late. The fact that I have this choice at all—isn’t that what we’ve been fighting for, Rose? A woman’s right to make her own informed decision about what happens to her body?”
“Nancy.” She sighed and squeezed my hand. “I know what you’re going through. I know how scary it is, and I’m telling you, you don’t have to do this.”
“You know what it was like for you, Rose. Every person comes to this with unique parameters—genetics, histology, emotional history, resources—that’s why the choice has to be in our hands and no one else’s.”
“It’s like setting off a neutron bomb inside your body. For 10 percent.”
“It’s worth it to me. I need to know—and I want Mommy to know—everything that could possibly be done was done. I’m not waiting until that 10 percent advantage turns into a last-ditch effort.” I chucked my notebook in my purse. “I’d rather get hit by a bus.”
I started chemo and fought the downward spiral every inch, every drip, every lost eyelash of the way. Suzy used to tell me there was a metallic taste in her mouth; nothing smelled or tasted like it was supposed to. Now I understood what she meant. Along with the unpleasant aluminum foil tang at the back of my throat, I felt a creeping dread as my experience more and more closely paralleled my sister’s.
“You’re not Suzy,” Mommy kept reminding me. “It may be the same cancer, but you’re not the same person, and this isn’t the same situation. Not at all.”
But it tasted the same. It smelled the same. We were looking at the same sad pedestrian watercolors in the same uncomfortably cool waiting rooms. I don’t know how Mommy stood it, walking those halls all over again, staying in the hotels, eating the dry cafeteria sandwiches and little crackers from the vending machines. The night after my first dose of chemo, I was wretchedly sick. Anti-emetics weren’t what they are today, and the people living in the hotel rooms around us were cooking some kind of strong, pungent food on hot plates. Mommy almost took the roof off the place. She packed our things and moved us to another hotel in the middle of the night.
I cut my hair short, hoping to keep it, but it was coming out in the brush almost right away. I stepped in the shower one morning, pulled the rest off, and cleaned the shower drain, bald and weeping. Then I parked a wig on top of my head and fixed myself up to go out with Norman. I couldn’t bear to have him look at me like I was pathetic. Thoughts of Maureen must have haunted him at times, but he never missed a beat. I’ve seen men pull away from their wives in that moment, grieving and separating from them as a measure of self-preservation. Not Norm. He made me laugh every day, and at night, he kept me in his arms and made me feel undamaged. If anything, our relationship took on an even deeper, more grown-up nature. The sexual connection of two like minds, two life forces, can withstand any impairment of the body. Cancer and aging are no match for that kind of love. I was strengthened by it every day.
Eric was nearly nine years old now: old enough to know, but too young to understand. Since he could remember, he’d been hearing about the ravages of breast cancer. He knew his Aunt Suzy had died of it. I took great pains to look and act as healthy and strong as I could in front of him. He walked in on me one morning before I had my wig on, and the sight of my bald head was a jolt. I could tell he was frightened, but also a little curious. But apparently more curious than scared. Before he left for school, I bent down to kiss him, and he nicked the wig off my head and ran off with it.
“Eric!” I charged after him. “Give me that thing! That’s not funny!”
But of course, by the time I caught up with him and wrassled him to the ground, we were both breathless from laughing.
No matter how exhausted I was, I put myself together and plodded off to the auxiliary tea, luncheon, meeting, school function; whatever “everyday” meant, that’
s where I wanted to be. But I still got sicker. My mouth was full of sores; even warm broth felt like broken glass. Black, indecipherable dreams jolted me awake several times a night, and I’d lie there with my heart pounding, desperate to get some rest. It was like trying to sleep with jackals circling. At first, I’d get up and creep quietly to the kitchen, where I sat drinking wine and looking at clinical trial data. One glass became two, and on top of all the meds, that was the last thing I needed. I quickly realized I’d feel better if I forced myself to stick to a healthy eating plan and daily exercise.
I begged Blumenschein to just knock me out and give it to me all at once, but of course, that’s not possible. It’s one of those situations that calls for the old Winston Churchill approach: “When you’re going through hell, keep going.”
“Sometimes, I have to admit … I’m not sure this is worth it,” I told Betty.
“You’ve studied this disease like no one else,” she said. “Trust yourself. Believe in your good judgment. The rest is up to God—whatever ‘God’ means to you.”
“Honestly, Betty, I don’t know anymore.”
“Remember that line in the Twenty-Third Psalm? Yea, though I walk through the valley of the shadow of death … Nancy, it says you walk through it. You don’t stop. You get through it, one day at a time, and if a day is overwhelming, one hour at a time.”
I’m more grateful than I can say for the friends who surrounded me with support during that year. Betty, Rose, Mommy, all the women who’d already given so much to SGK.
“Get out there and do things,” Rose advised. “Keep a full calendar. Don’t give yourself a chance to worry. And don’t even entertain the thought that you might not be around to fulfill every single obligation.”
I kept my hand in foundation activities, attending every organization lunch, every board meeting, every seminar and symposium, and wherever I was, I talked about what was going on with me. Some people thought I should have handled it privately and not talked about it to party guests or possible donors—not to mention the media. To their mind, I was a publicity hound, exploiting this opportunity to gain attention for the cause and money for SGK. I don’t deny that. Cancer had taken a hell of a lot from me; it was about time it gave a little something back. I think there may have been a bit of smugness in their attitude: “Well, what did she think was going to happen if all she ever thought about was breast cancer?” As if I’d brought it on myself by speaking the words out loud, like saying “Open Sesame” outside the forbidden cave and poof, open it rolls.
Promise Me Page 27
