By Kristy Hammam, as told to Stephanie Watson
Medically reviewed by Michael W. Smith, MD
October 8, 2021
It's July 2019. I'm lying in the middle of the desert in southern Jordan, gazing up at the night sky. Wadi Rum, where my family and I are camping out with our Bedouin guides, is one of those rare places with so little ambient light that you can make out all of the constellations. Shooting stars light up the darkness. Prickly hedgehogs scamper around our tent.
Camping in the desert is one stop on my family's bucket-list trip. We will also ride camels into the sunset, float weightless in the Dead Sea, and explore the ruins of Petra's tombs and temples.
The desert heat is oppressive and our adventures are strenuous. But I feel great. My sons, Milo and Evan, are caught up in the moment. They don't yet know the secret I am carrying. I have no intention of upsetting them here, halfway around the world from the security of our home. I want us to savor this unique experience. I don't want to ruin their memory of this time together.
A few days before Jordan, we had been in Beirut visiting my husband Nabil's family. We had planned a party that night to celebrate Milo's 18th birthday. I was in the bedroom of our family home when an email arrived from my doctor back in the U.S. Results of the biopsy I'd had before we left for vacation were in.
I took a deep breath and clicked on my laptop to open the message.
"You have triple-negative breast cancer," it said.
I knew what that meant. Triple-negative is one of the most aggressive types of breast cancer and one of the hardest to treat.
I was stunned. I was only 48 and healthy. How could this have happened? Where did this come from? The shock was followed by fear and apprehension. What would my treatment be like? Would it upend my life? My career?
Before my diagnosis, I led WebMD's 90-person editorial team and managed a household with two active teens. When it came to my family's health, I was the one in charge. If anyone got sick, I did the research, asked the questions, and chased down the answers.
Cancer flipped my role. Within a year, I couldn't walk down a flight of stairs without help.
I grew far too sick to advocate for myself. I was to learn that our fractured medical system, difficult to navigate in the best of times, is all but impossible to wade through when you're gravely ill and at your most vulnerable.
From Bad to Worse
Cancer had never been on my radar. I embraced the kind of lifestyle WebMD's articles recommend. I don't eat red meat. I attended barre classes every day and practiced yoga and meditation. I walked to the office whenever I could.
On paper, I was extremely low risk. I had no family history of breast cancer on my mother's side. My mammograms had all been perfectly normal.
"I didn't know it then, but that was the moment when my life started to unravel."
Then in early 2019, I felt a lump underneath my right arm. I went to see my internist. He thought it was a swollen lymph node, which is a sign that I had an infection. In fact, I recently had one. He advised me to take ibuprofen to bring down the swelling.
I followed his instructions, and the lump went away. I thought no more of it.
Then a few months later, I felt another lump, this one in my right breast. This time, I went to my obstetrician. "I think this is a cyst," she said, and sent me to a breast center for an ultrasound and to get the cyst drained.
After my ultrasound, the doctor at the breast center came back into the room. "It's solid," she said. "We're going to have to do a biopsy."
I didn't know it then, but that was the moment when my life started to unravel. I wondered if I should cancel our family trip to the Middle East.
"No, go on your vacation," the doctor said. "We're not going to be able to get you into treatment that quickly if it does turn out to be cancerous."
Plan of Attack
We flew home from Jordan on a Sunday. The next morning, I went to my oncologist's office for a mammogram, a PET scan, and other tests. We needed to know if the tumor had spread beyond my breast.
It had. The cancer had reached my lymph nodes, which is why I had noticed swelling there.
Some breast cancers have receptors that help them grow when they're exposed to the hormones estrogen and progesterone, or to a protein called HER2. Those cancers respond well to hormone therapy or to drugs that target HER2. The type I have, triple-negative breast cancer, lacks those receptors. My tumors can multiply independently of hormones, so they're much harder to treat.
If I'd been diagnosed just a few years earlier, chemotherapy would have been my only option. Chemo works, but it can't stop my type of cancer from spreading for more than a few months.
Luckily, my doctors had another treatment: immunotherapy. Instead of killing the tumors directly, these treatments would retrain my immune system to recognize the cancer cells and to attack. I was tested to see if I had a protein called PD-L1 on my tumor cells. That would mean I was a good candidate for a type of immunotherapy called an immune checkpoint inhibitor.
Immunotherapy is the latest and greatest cancer treatment. At a WebMD Health Heroes award ceremony in January 2019, I met James Allison, PhD, the immunotherapy pioneer and Nobel Prize-winning scientist. When he accepted his Health Heroes Lifetime Achievement award, he predicted that "soon, immunotherapy is going to be part of every successful cancer therapy."
I was elated when I learned that I did have the right protein receptor. In August 2019, within a month after my diagnosis, my doctors started me on a regimen of Tecentriq immunotherapy, along with the chemotherapy drug Abraxane.
I had some side effects, like fatigue and diarrhea. But overall, I did pretty well on the treatment. I felt so good that I continued to work.
Breaking the News
Telling my family that I was seriously ill is one of the hardest things I've ever done.
After I was diagnosed, Nabil and I sat down with our sons, Evan and Milo, then 16 and 18, respectively, and told them what was happening. I thought the best way to handle it was to be open and let them ask questions.
"My sons wanted to know, 'Are we going to have two bald parents?' "
They asked if I was going to lose my hair. My husband is bald. "Are we going to have two bald parents?" the boys asked. They wanted to know how sick I was going to get and how the treatments might affect me. They asked what they could do to support me. I told them, "Just be there, and love me. That's all I need."
It also was a challenge breaking the news to my parents. As a mother myself, I can imagine how hard it must have been for them to learn that their child was gravely ill. They offered to come immediately and take care of me. I felt their love, but I also sensed their anxiety.
I confided to only a small circle of close friends and family. At work, only my boss and a few direct reports knew. I didn't want my cancer diagnosis to overshadow everything else in my life. Everyone I told was incredibly supportive.
For 5 months, I underwent treatment and continued to work. Then, in January 2020, I started getting headaches. My oncologist ordered an MRI scan of my brain. The results were normal; no signs of cancerous activity.
"Maybe it's the treatment," she said. "Let's keep an eye on it."
In March, my vision became blurry. My eyes started to cross, giving me double vision. My right leg went numb intermittently. I'd also feel pins and needles like it was asleep. Sometimes it would give out completely. Something was wrong.
"Working from home allowed me to hide my impaired vision and pretend to carry on as usual."
In rare cases, Tecentriq can damage the nerves. My doctor thought that's what I was experiencing. A neuro-ophthalmologist tested me for different autoimmune diseases, including Graves' disease, which can cause vision problems. The results were all negative.
The doctor fitted me with a pair of prism glasses to correct the double vision and an eye patch to prevent my eyes from crossing. About the same time, WebMD's office shut down because of the COVID-19 pandemic. Working from home allowed me to hide my impaired vision and pretend to carry on as usual. Privately, I struggled to keep pace with my job.
My doctor gave me a lumbar puncture (also called a spinal tap) in an attempt to find out what was behind my vision and nerve problems. Ten minutes before I was to lead a remote meeting with my team, she called. My cancer had spread. The malignant cells had traveled from my breast to my brain and spine. They were now floating around in my cerebrospinal fluid. That's why they hadn't shown up on the MRI.
It was a devastating diagnosis. Called leptomeningeal disease, the condition affects only 5% of people with cancer. Even with treatment, the average survival is just 2 to 4 months.
"Look, you work in the medical field. You know this isn't good," my oncologist said.
"I'm going to do everything I can to fight this," I said.
Health Care Hurdles
A huge stumbling block in managing my cancer was the chaotic state of our health care system, even at one of the nation's top cancer hospitals. Navigating through a morass of insurance, billing, scheduling, and other logistical obstacles was a full-time job, one I was incapable of doing because I was sick and disabled. I had a great support network, and I often thought about people who weren't as fortunate. How did they do it?
My hospital would schedule me for a brain MRI at 8 in the morning and a spinal MRI at noon. That kept me trapped in the diagnostic center for more than 3 hours. I once spent an entire day in chemotherapy because my pharmacy had a question about my blood work and didn't hear back from the doctor's office. Apparently the pharmacy had no workflow system for handling such glitches.
I got reams of mail stamped "This is a statement. This is not a bill." If it's not a bill, why are you sending it to me? Because now I have a stack of papers to look through and decipher. Nabil helped, but he was also taking care of our boys, driving me to treatments, and running two businesses. The paperwork piled up.
There were mistakes, too. I was stuck with a $17,000 bill for a genetic profile test because my doctor had neglected to preapprove it, and my health plan refused to pay. I burned hours on the phone with my insurer to sort it out. We had to resort to issuing a cease-and-desist letter to the testing company that billed us repeatedly.
The whole process was bewildering and unbelievably frustrating.
When I was diagnosed with leptomeningeal disease in April, my doctor prescribed radiation therapy. Trouble was, the radiation oncology department couldn't schedule me until June. Six weeks is an eternity for a disease that is typically fatal within a few months.
So I did what I had to do. I called in a favor to someone I knew at the hospital. A few days later, I was prepped for radiation therapy.
If I hadn't called in that favor, I probably wouldn't be alive today.
In May 2020, as the pandemic raged outside, I lay face-up on a cold metal table in a radiation oncology center. A white mesh mask covered my head and face and locked me into position. For the next hour, I would peer through the mask holes while the table slid in and out of a circular machine that zapped my brain and spine with radiation.
Locked in place and holding perfectly still, I felt a wave of angst and anxiety wash over me. I wasn't sure what to expect or if the treatment would even work.
Please let it work, I silently begged. I don't want to leave my kids. I don't want to leave my husband. I have so many more things to do.
My emotions mounted. As soon as that first radiation session started, my body went limp. I passed out. My doctors suspected a seizure. They rushed me to the emergency room on a gurney. They called Nabil in and told him I might not make it.
It turned out to be a massive panic attack. It happened to me again the next day. I would need strong anti-anxiety medication just to get through the rest of my treatment.
Radiation therapy ultimately saved my life. But it also damaged my body and changed me forever. It splintered my vertebrae so that I couldn't stand or walk on my own for a while. I needed a wheelchair. And it harmed my optic nerves, permanently dimming the vision in my one good eye.
Imagine that you're sitting outside at twilight with no lights on. That's what the world looks like to me now. I can see silhouettes, but I can't decipher faces or facial expressions. Texts and emails are too hazy to read.
Losing your eyesight swiftly plunges you into a world of helplessness. You rely on others for everything. "Can you read this for me? Can you get this for me? Can you help me get from here to there?" I can't drive. I can't work. I can't even do laundry.
I struggled with guilt when Evan's bike tire blew at a park and I couldn't fetch him in the car. He was applying to colleges at the time, and all I could do to help was listen to him read essays, suggest closing lines, and offer advice.
Radiation also wrecked the nerves in my legs. The pain was excruciating. I would wake up at 4 a.m. crying from the agony. My doctors put me on gabapentin and oxycodone to try to tame the pain, but the drugs made me completely loopy. I don't remember a lot of what happened back then.
During this time, a couple of frightening incidents landed me in the hospital. First, my chemotherapy port got infected. Then I developed a blood clot in my lung, a pulmonary embolism, from my treatment.
These incidents happened right in the middle of the pandemic, when family members weren't allowed in hospitals. I was by myself, with no real awareness of who -- or where -- I was. At one point, I asked a doctor friend who worked at the hospital to take out my IV and help me break out of there. During another incident, I asked the nurses, "Why is this coffee so bad? We're in Italy!"
In a sense, I was in a different country. I was in a different world.
When you have cancer, a strong support network is everything. Every phone call, text, card, or gesture is so meaningful. The support I got from family and friends helped me heal.
I drew inspiration from the stories of women who'd been on this journey before me. The host of WebMD's Health Heroes awards, Robin Roberts, also survived triple-negative breast cancer. Our 2018 honoree, Oscar-winning actor Kathy Bates, became a spokesperson for lymphedema research and education after her breast and ovarian cancer diagnoses.
By far my greatest support was at home. My sister-in-law made dinner for me and my family every day for a year. My parents put their lives on hold and came to stay with us the summer I had my radiation. They fed the boys and me, and did the shopping while Nabil assumed my household responsibilities. I couldn't stop thinking about people who don't have a support network. I don't know how I would've made it this far without mine.
My illness gave me the chance to witness my family's resilience. I'm sure they struggled privately, but with me they were always strong, optimistic, and encouraging. Evan used his technical savvy to help me find low-vision software and devices. When I was spending a lot of time in bed, Milo would lie next to me and we'd listen to audiobooks for hours together.
My illness has changed my relationship with my sons for the better. We have deeper conversations now. I've gotten to know them on a different level than before, when our discussions revolved around the logistics related to school and band practice.
I remember little of what happened during my radiation treatment. When I finally started coming back to myself, I felt like I was floating in the ocean, looking for land. It was like one of the archetypal stories of human existence: going into the abyss and coming back out, like Jonah in the belly of the whale.
That period of time felt like being in bardo, a strange purgatory between life and death. I knew that I could let go and fall into oblivion, or I could hold on and try to find dry land.
After I finished radiation therapy, scans showed the cancer had cleared from my brain and spinal cord. It had, however, returned in my breast, as I had to stop chemotherapy during my radiation treatments. I started a new chemotherapy treatment regimen a few months ago, and I'm still on it.
Recent MRIs and PET scans have shown no signs of cancerous activity. My doctors are optimistic.
I've been able to regain a lot of my muscle strength and rebuild my body with physical therapy and exercise. I couldn't walk up the stairs a few months ago. Now I can go outside and take daily walks.
My life has slowed. Pre-cancer, I'd be up at 5, squeeze in an exercise class, and send my kids off to school before I headed in for a full day at the office. Every second was filled.
Now I'll sit and listen to an entire piece of music without interruption. Sometimes it's Mendelssohn's Violin Concerto in E Minor. Other times it's pop songs from musicians I loved in my youth, like the Commodores and Sting. I can sit on my deck and take in the sunshine, feel the breeze blow, and just be.
Cancer made me realize I wasn't spending enough time on things that really matter. One of them was my personal relationships. I think about how lucky I am to be alive and how much life means to me.
For the last couple of years, I've been focused inward, trying to get better and regain my strength. Now I'm starting to look outward at what I can contribute. My life can never be what it was before. I have to find a new reason to be.
My new goal is to start a nonprofit organization offering services to people who don't have the resources, health care knowledge, and support system that I was fortunate to have. Paying it forward is a way for me to find purpose.
Cancer rewrote the story of my life. Now I'm reclaiming the narrative.