This Is Us

On the Morning of My Wife’s Death, I Read Her This Tribute

Rachel Lozano was obsessed with life. This is her story.

Gabe Lozano
Human Parts

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Photos courtesy of the author.

IIt’s June 2005 and I’ve just graduated college. Jobless and bored in St. Louis, I find myself at a Cardinals game two seats down from an incredibly attractive woman. A bit to my surprise, she seems interested in me and asks what I do, to which I respond, “Well, I don’t have a job. I don’t have a car. I don’t have any money. I live with my parents. And when I’m lucky, I get to drive my mom’s minivan.”

She hands me her business card and instructs me to call her sometime.

I am shocked, but elated.

Those were the days of AOL Instant Messenger (AIM), so when I arrive back to my parents’ house, I immediately send her an instant message. She’s not online, so I crank the computer’s volume up to full blast and turn the screensaver off just in case she responds while I’m asleep.

Sure enough, I wake up early the next morning to the erratic pings of her IMs. As we begin to chat, she asks if my great aunt Janet — the mutual connection who sat us next to each other at the baseball game — told me about her health problems.

“She didn’t say anything,” I admit.

“Okay. Well, I’ve had cancer three times and I’m only one year in remission from a type of cancer of which I was given a zero percent chance of survival,” she typed. “What’s your email address? I’d like to send you the transcript of a speech I gave out in Los Angeles.”

Minutes later, Rachel’s unbelievable backstory is in my inbox: a 45-minute transcript detailing the horrors of three bouts with cancer. Borrowing a few of Rachel’s words, here are the highlights:

At 15, Rachel’s body was shutting down by the hour. Doctors discovered an egg-sized tumor strangling the top of her spinal cord and rushed her into emergency surgery. It’s known as an Askin’s Tumor, a rare sarcoma. For the first of many times to come, she escaped death. Post-surgery, with cancer still lingering throughout her back, she was given a 40% chance of survival and endured a year-long treatment of intensive chemotherapy and radiation.

At 18, they found Askin’s Tumor cells in her bone marrow. This time, the odds of survival were 10%. She slogged through a life-threatening bone marrow transplant and, once again, sidestepped death.

At 19, Askin’s Tumor struck again — a tumor between her heart, right lung, and spine. Maxed out on chemotherapy and radiation, she was given a 0% chance of survival and just weeks to months to live.

Saying our vows on July 5, 2008, at the Cathedral Basilica in St. Louis, MO.

When I finish reading, I IM her back: “I’m not going to feel sorry for you, but I respect you and what you’ve gone through.”

“That’s exactly what I wanted to hear,” she told me.

This is how I met my amazing wife. We married on July 5th, 2008, in the church where I delivered this eulogy over a decade later.

Cancer, along with Rachel’s ensuing health complications, was always part of our life together. Like anything, though, it took me a while to learn exactly what that meant.

For our first date, I took Rachel to play disc golf — an ignorant choice, as it turned out. As we stood on the tee box of the first hole, I told her to throw the disc as far as she could. A year off a major surgery required doctors to cut through the muscles in her upper back to remove a tumor that weaved between her heart, right lung, and spine, she threw the disc just five feet on a 535-foot hole. Needless to say, we didn’t complete the course that day.

Rachel blowing me a kiss. She did this a lot.

On our second date, we went out to eat with her friends. As Rachel took a bite of a deep-fried appetizer, she joked, “I’m not sure how well my body is going to digest this considering I don’t have a gallbladder and all.” (Rachel’s gallbladder was removed before we met.) I looked around anxiously until I realized I was the only one who wasn’t laughing.

Because I was a newbie to the cancer world, Rachel gave me my first dose of what “new normal” actually means. Phrases like “We need to head home because I forgot my pills” didn’t merit a second thought. Texts like “My scans and blood work came back fine” became routine.

Scientifically, it’s believed that Rachel may be the only known survivor of Askin’s Tumor who relapsed following a bone marrow transplant and went on to live more than a few weeks. As doctors studied her case, the Catholic Church began to investigate whether her survival was a miracle. In 2010, an investigative tribunal completed and sent a 3,000-page report to Rome for review by the Vatican’s Congregation for the Causes of Saints.

Rachel made a point to use her unique health background as a source of hope and inspiration for others through speaking, writing, and art. She spoke to audiences across the world — in Spain, Denmark, India, and Kenya, among other countries — about her near-death experiences, her faith, and more. In 2008, she was honored as Glamour’s Woman of Your Year, an award for which the magazine’s readers vote on their personal heroes.

Left: Rachel posing with a piece of her artwork at an art show on October 6, 2018. Right: Rachel leading an art therapy workshop during a cancer advocacy trip in Kenya during September of 2019.

During her various bouts with cancer, Rachel discovered art therapy and began to help people express how they felt through art when words were inadequate. So, despite dropping out of the University of Kansas’ architecture program when she was diagnosed with cancer for the third time, she eventually found her way back into the classroom. Rachel went on to complete a dual master’s degree in art therapy and counseling in 2013. She became a registered art therapist and a licensed professional counselor. At the time of her death, Rachel was a bereavement therapist at BJC Home Care, a nonprofit healthcare organization in St. Louis. She held previous therapy roles at Great Circle, Bilingual International Assistant Services, and Mercy.

During her last hospitalization, one of her best friends joked, “This is just Rachel’s way of doing a little continuing ed.” A bit morbid, but also funny.

Realistically, the lighter side of sickness has made our path more bearable. Take, for example, how Rachel played the “sick card.” Back in October of 2009, as we left a wedding reception, a cop pulled us over for speeding. Rachel had short hair at the time, so she could have passed for a recent cancer patient (though she wasn’t one, at the time). To our luck, the officer approached her side of the car first.

“Sir, I’m a cancer survivor and don’t feel well. We’re just trying to get home,” she pleaded.

“Have a great night,” the sheepish police officer responded as he backed away from our car.

To be fair, Rachel didn’t feel well for much of that night and she was a cancer survivor, so technically everything she said was true.

Rachel was most herself in one-on-one human connection. Last year, as part of us getting to know each other better, we ran through a value-card exercise. We categorized dozens of cards representing values such as wealth, knowledge, and compassion as “not important,” “important,” or “very important.” Rachel’s “very important” pile spoke to what she held dear: interactions with herself, others, and the world. However, when asked to narrow down her top value cards, what remained were those focused on bettering her ability to interact with others.

It’s no surprise, then, that Rachel was a best friend to so many. I often joked that she would collect a new best friend during each trip she took, and then again at random points within a year. Those new friendships became relationships she’d hold onto for the rest of her life — and in her final days, it was beautiful to witness the depth of these connections. Rachel proactively scheduled dozens of one-on-one goodbye conversations. Typically, they went something like this:

“We’ve run out of options and my time on earth is coming to an end. I love you. Thank you for everything.”

Most people would begin to cry and then Rachel, strong as ever, would offer reassurance: “It’s okay, I’m at peace. You’ll be okay; you are so strong.”

During one occasion, two close friends of ours were in the room and, of course, crying. Without hesitation, Rachel grabbed Kleenex and handed one to each of them.

I later joked with her about this, to which she responded with a smile and a shrug, “I can’t help it. I’m a therapist.”

Rachel and a few of her close friends on the morning of her death. Yep, she’s still smiling.

In her last few weeks, even in moments when Rachel was unable to speak, she would demonstrate her love by touching her heart and signing “thank you.” I told Rach this left so many people touched. She replied, “Yep, those are my Mother Teresa moves.”

Rachel wanted to hear her own eulogy. During the first two times I read it to her, she held my hand for the hard parts.

Leave it to Rachel to spend her final days comforting the living.

She remained stoic and fearless despite nonstop health complications, often masking how sick she actually was. Her famous saying was, “I play a healthy person well.”

She once walked around for days with a collapsed lung before it was flagged by her cardiothoracic surgeon during a pre-scheduled, follow-up appointment. She was known to take trips in the days leading up to major surgeries and once attended a Rascal Flatts concert the day after her gallbladder was removed. She stayed active during periods when she should have been on bed rest.

For the average person, this level of zest to live life despite insane setbacks is difficult to comprehend. For Rachel, it was simply par for the course.

I’ve listened to and digested Rachel’s story hundreds of times through her speeches, media coverage, and the like. So while, intellectually, I realize that Rachel should have died a long time ago, I didn’t meet her until after her last death-defying bout with cancer. As a result, the prospect of her death was always an abstract concept to me.

That all changed during January of 2014. Though her tests were coming back clear, she started to mention that something felt wrong. This continued for months. Then, on June 12, when I was in New York City for work, my phone started ringing off the hook. The lab that had performed her latest blood work was desperately trying to get ahold of us. They told us Rachel had potentially contracted tuberculosis and needed to be isolated immediately.

Rachel didn’t end up having tuberculosis, but instead Mycobacterium kansasii — a rare, albeit non-contagious infection in the same bacteria family. The infection had begun to take over parts of both of her lungs, and it had already caused permanent damage. Rachel immediately began taking a heavy cocktail of antibiotics.

Following the first wave of improvement, her health deteriorated further. Rachel’s right lung function was near zero, as her body was killing it off (which is medically known as an autopneumonectomy).

The troubles with her right lung date back to damage she incurred from radiation treatment, pneumonia, and the aforementioned collapsed lung. Rachel’s medical team concluded that her bad lung was the root cause of a worsening infection, and their best option was to remove the troubled lung (a procedure known as a pneumonectomy).

This kicked off a three-year series of life-threatening events.

By April 20, 2017, Rachel had a hole in her airways (known as a bronchopleural fistula), an infectious pocket in her right thoracic cavity (known as an empyema), and a serious bacterial infection known as Serratia.

Given the technical debt Rachel’s body had accrued over the years, she was slowly dying. She’d need a high-risk surgery to solve the problem, but we couldn’t find a surgeon willing to cut.

While I was sitting in a conference room at work, a friend asked me how I was doing. In classic me mode, I unloaded every detail about Rachel’s current situation.

When finished, he asked how he could help.

At the time, we’d been trying to get in touch with Dr. Alec Patterson at Barnes-Jewish Hospital in St. Louis. He was part of a team that performed the first successful lung transplant in history and later helped build the hospital’s lung transplant division. He was experienced in complex medical cases without a clear course of action, so I thought Rachel’s case would spark his interest.

Thanks to the encounter in that conference room, the next morning I found myself on the phone with my friend’s dad, a surgeon who used to work at Barnes. He agreed that Rachel’s case might be a fit for Dr. Patterson and offered to introduce me.

By Monday, Rachel was in Dr. Patterson’s office. They dialed me in for an impromptu discussion about the case. Following an exploratory procedure on that Thursday, he looked at us with confidence and stated plainly, “I can fix this.”

On June 8, 2017, Dr. Patterson and a plastic surgeon took care of business, hiccup-free.

If you dig far enough, you’ll find dozens of similar stories that led to saving Rachel’s life. And while we’re on that topic, a special hat tip to Dr. Bob Bergamini, Rachel’s long-time oncologist and primary care doctor for 21 years. Dr. Bob, as he is affectionately known around town, is a brilliant man and relentless patient advocate who guided the ship for the bulk of these life-saving events. Thank you for everything, Dr. Bob. We love you.

Rachel and Dr. Bob, her long-time oncologist and primary care doctor.

From a health standpoint, the next two-and-a-half years were fairly calm. Rachel began traveling monthly, trying out every new restaurant in town (St. Louis has a tremendous culinary scene), and volunteering at places like Annie’s Hope, which provides grief counseling for kids. Then, with 2019 in full swing, she began targeting additional activities that combined her professional skill set with her love for traveling. She teamed up with a nonprofit called A Fresh Chapter to build cancer support programs in India and Kenya. In November 2019, Rachel began a new job as a bereavement therapist at BJC Home Care.

Weeks after starting her new job, Rachel and I semi-snuck into the BJC Home Care office on a Sunday evening so she could show me around. She was so proud of this job, and I was so proud of her.

On January 2, 2020, I received a text from Rachel. She asked me to take her to urgent care. By day’s end, we found ourselves in the emergency room at Barnes-Jewish, and Rachel was admitted by morning. She was diagnosed with metapneumovirus, which for the average 36-year-old person would present in the form of a cold. For Rachel, it cascaded into a suspected superimposed bacterial pneumonia. On January 5, she nearly died and was placed in a medically induced coma.

Rachel was initially placed in a medically induced coma on January 5, 2020.

The next seven weeks were marked by creative attempts to recover Rachel’s pulmonary function, but as additional complications piled on, we simply ran out of options.

Fifty-six days after we headed to urgent care, Rachel took her last breath.

From day one, Rachel and I chose to live our lives with some sense that death might be around the corner. As a result, we didn’t hold anything back. For starters, her email address was obsessedwithlife@gmail.com. We incorporated our bucket lists into our day-to-day lives. We loved each other intensely, but gave each other enough personal and professional space to independently flourish.

On February 24, I stumbled across some relevant commentary regarding death by Maria Popova on the Brain Pickings blog:

We die. All of us — atoms to atoms, stardust to stardust, the mountain to the sea — you and I. The dual awareness of our improbable life and our inevitable death is what allows us to animate the interlude with love and beauty… It is what puts into perspective just how fleeting and vacant and self-embittering all of our angers and blames and resentments are in the end — what beckons us, instead, to leave something of sweetness and substance in the mouth of the world.

Rachel and me sharing a shake on October 12, 2019.

Rachel and I understood that growing old together wasn’t in the cards, but we still let ourselves imagine it. These fantasies were never about extravagant trips or big houses, but rather exploring the bounds of unconditional love. We’d play out scenarios like, “Would you still love me if I lost all my limbs, gained a bunch of weight, and went gray?” To which Rachel would affectionately respond, “Oh, yeah — you’d still be Gabey to me.”

Change is difficult, though, and not just when it comes to death. For example, in November of 2018, I picked out a puppy without consulting Rachel. She’d never been a dog person and had no idea this was coming. I sent Rachel a picture and a link as a quick heads-up. She was pissed. I’ve only seen Rachel truly mad a handful of times, but this was one of them. She began frantically sending me angry texts like, “Seriously?! What happened to caring about my feelings?” I was at work, but she instructed me to come home.

“I would prefer to chat via text,” I type back.

“How about I come to the office to discuss,” she fires back.

“I would prefer to chat via text,” I say again.

Left: Rachel and Harper cuddling during a family staycation at the Angad Arts Hotel in St. Louis, MO. Rachel and I were celebrating our 11-year wedding anniversary. Right: Rachel and Harper cuddling in the Barnes-Jewish MICU on February 21, 2020.

Eventually, her tone went from anger to love. Rachel and our dog, Harper (a name she picked out), became inseparable. During her most recent hospital stay, a special nurse in the ICU, Julie, helped arrange a Harper visit. Harper paid two more visits to the unit where Rachel spent her final days.

February 20 marks the date we came to terms with the biggest change of all: that near-term death was certain. We spent that morning sitting next to each other talking via text (Rachel was mostly unable to speak due to the size of her trach tube). We covered all sorts of topics, like her being at peace with dying and us appreciating the amazing life we’d built together.

She asked me, “What do you think life will look like for you?”

Man, I considered so many responses that would bring us some comfort, but the only word that could come out of my mouth was, “Scary.”

As it turns out, back in 2015, when Rachel had a setback post-pneumonectomy, I’d jotted down some advice for my future self. Here’s what I wrote:

It’s okay to be scared. I’m not sure this is publicly stated enough.

When Rachel has health setbacks, I typically go through multiple phases.

First, I’m quiet, feeling and expressing little emotion. This mostly confuses people, as they expect an immediate, emotionally charged reaction.

In time, I’m terrified, as I lack context but still sense the seriousness of what’s at hand. This makes most people uncomfortable.

Next, I begin information gathering, obsessively researching and wrapping my brain around the situation; for me, there is enormous comfort in information processing. During this process I tend to share key findings, and as others recognize my own comfort level improving, they in turn respond with an increased comfort level.

Lastly, I move into game time mode — ready for the next steps, irrespective of what those might be. This is the most acceptable ‘public’ persona.

Tonight, I was talking offline with a good friend, who asked how I was doing. I responded that sometimes I have no desire to externally project positiveness, when sometimes the only thought going through my head is, ‘Eep, Rachel might die.’ And her potential death is not only frightening, but utterly incomprehensible.

Last weekend, this exact thought ran through my head in the middle of BWI airport. I traveled East to bring Rachel home, following her emergency visit to Dartmouth Hospital. As we sat in the cafeteria of Baltimore’s airport, we both broke down in tears, wrapping our arms around one another, holding on for dear life.

So I’d contend strength is not measured by the absence of fear. Rather, strength is the complete acceptance of being terrified, matched with desire to still take another step.

Today, Rachel’s death is an immutable reality. We were immensely blessed and I am certainly not mad, but fear surrounds me. I’m scared because I will never again experience the way Rachel looks at me without judgment, offering unconditional love in a form that no one else can reproduce. I am scared because Rachel and I won’t share new memories. I am scared because there will forever be a massive hole in my heart.

Left: Rachel and me eating ice cream on the eve of her death. Right: Rachel and me (not pictured) eating more ice cream and watching TV at 1:19 AM on February 27, 2020.

Two nights before her death, this fear began to feel a bit too real, replacing much of the peace I’d found in the days prior. As I sat by her bedside crying, she forced her eyes open and put her left arm around me. And as my fear subsided with her touch, we decided to have a date night, eating ice cream and watching a movie.

I suspect it’s only natural to think of what one would do if they knew the end was near. Unfortunately, Rachel and I now have firsthand knowledge. In practice, the end of my wife’s life felt like a highly accelerated version of the exact same unconditional love pursuit we’d been exploring for 14-and-a-half years. With the scariest moment of our lives just hours away, we first reverted to simple joys — like cuddling, eating more ice cream, and watching the latest episodes of This Is Us and A Million Little Things. Once settled in, we forced our minds to reimagine the bounds of unconditional love by circling back to a near-final draft of this eulogysoaking in every single detail; processing the impact of death; and providing one another reassurance that in spite of an utterly incomprehensible situation, we were in this together.

On the morning of February 27, we glanced into one another’s eyes a final time, smiled, and each said, “I love you. Thank you for everything.” Rachel then closed her eyes and we leaped into the terrifying unknown.

Rachel smiling and flexing at 5:08 AM on the day of her death. “Strong ’til the end,” she remarked.

Rachel Lozano: March 22, 1983 — February 27, 2020

This essay is adapted from the eulogy I delivered at my wife’s memorial service on March 3, 2020.

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