HEALTH CARE HURDLES

A huge stumbling block in organization 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 since I was sick and disabled. I had a great sustain network, and I often thought about people who weren’t as fortunate. How did they do it?

My hospital would agenda 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 inquiry 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 perhaps 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 location. For the next hour, I would peer through the mask holes while the table slid in and out of a round machine that zapped my brain and spine with emission.
Locked in place and holding perfectly still, I felt a wave of angst and nervousness wash over me. I wasn’t sure what to expect or if the action 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 perception swiftly plunges you into a world of defenselessness. 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 pay attention to him read essays, suggest closing lines, and offer recommendation.

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 dissimilar world.
When you have cancer, a strong support network is the whole thing. 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 unspecified my household responsibilities. I couldn’t stop thinking about people who don’t have a support system. I don’t know how I would’ve made it this far with no 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 sufficient time on things that really matter. One of them was my personal relationships. I think about how blessed I am to be alive and how much life means to me.For the last couple of years, I’ve been focused inward, annoying to get better and regain my strength. Now I’m starting to look outward at what I can donate. My life can never be what it was before. I have to find a new cause 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 maintain 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 description.

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