It all started with rubbery legs. My husband, Antonio, worked as a cook—on his feet all day—and would follow that with a couple hours of hard exercise. He was fit and healthy, a regular runner who didn’t have any vices beyond actually enjoying exercising and preferring fruit over dessert.
So when he started feeling a rubbery kind of unsteadiness in his legs—the kind you feel when you get off a treadmill or stationary bike and take your first few steps on a non-moving surface—along with a constant, dull pain along his upper back, we weren’t overly concerned but we did pay attention. We figured it was probably something he did while working out and was worth checking but not worth worry.
He saw a general practitioner, who didn’t know what was going on but prescribed muscle relaxers to see if that made a difference. He saw a chiropractor, who didn’t take X-rays but started in on adjustments to see if it would help.
The muscle relaxers and chiropractic adjustments had no effect, and as the days passed, the numbness crept farther down his legs and up his torso. He got to a point where he was having to hold on to things to move around, steadying himself on counters and railings as he continued working full-time.
Neither did the pain in his back cease, and at a subsequent trip to the general practitioner, he told us he wanted Antonio to get an MRI, that his office would contact our insurance about it. More days passed and despite leaving a message asking if we had to wait for the response from insurance to get the MRI scheduled or if we could go ahead and get it on the books, we hadn’t gotten a response.
And then came the series of fortunate events. Actually no, not fortunate events as much as fortunate people. Call it what you will—divine intervention, complete coincidence, serendipity—but if any one of the following people had not played their part exactly as and when they did, Antonio would not be alive today, or at minimum he’d be permanently paralyzed.
Thursday 10:00 am
I happened to be in an all day training class at work, where I happened to get into a conversation with the woman next to me about what my husband was experiencing. I don’t remember her name or even what she looked like, but I’m forever indebted to her, as she was the first person to give us any indication of how serious his symptoms actually were.
Up until that point we’d been going by the doctors’ reactions—curious, puzzled, but certainly not alarmed. “What you’re describing seems bad,” she said. “I think you should push for more attention.” Push for the MRI, push for another doctor to see him: don’t leave it to the doctors we’d been seeing to ensure his care.
In a previous job, I worked with a woman whose husband was a leading neuroscientist at a local, internationally-recognized university. I called her and told her about Antonio’s symptoms, asked if she’d be willing to run them by him and see what he thought.
At 10 Hours
Her husband called back and immediately let us know he considered the situation to be extremely serious. He thought perhaps Guillain-Barré or something equally if not more concerning. “Contact this friend of mine’s office and tell him I suggested you see him as soon as possible.”
It just so happens that we lived in a city with not one but multiple large university hospitals and associated cancer centers, all of which have absolutely massive networks that you’re pretty much guaranteed to get lost in. Since it was too late to call the office I did the only other thing I could think of that felt like action. I looked up the referred doctor’s info, actually found a direct email and sent him a message summarizing what we’d learned so far, as well as our friend’s recommendation that we see him as soon as possible.
I shit you not, he emailed me back fifteen minutes later: “I agree this is serious. Come see me at noon tomorrow.” Now if you’ve ever been exposed to any kind of university medical system, you know this is not how it works.
You find patient portals and system-based communications; you do not find a direct email for any practitioner. You may hear from an office representative via phone call or portal message; doctors absolutely do not respond to you directly, especially if it’s a cold email. You wait for days at best; you sure as shit don’t hear back in fifteen minutes. And you get referred to a general line to make a next available appointment; pigs are flying and hell is an icy wasteland before you get a next day opening from the physician directly.
At 32 Hours
It’s amazing to think back at how naïve we were. The combination of trust in the experts and absolutely zero imagining that he could have something more than a treatable issue put us more in a state of following the recommended steps, one after another, than following the rabbit hole of possibilities and fears.
After examining Antonio, the doctor told us he wanted to admit him to the hospital as a means to fast-track an MRI. “If I admit you, you can get the MRI as early as tonight versus having to wait until regular office hours on Monday.” We agreed and moved along in the process—at the time we had no kids, no pets, no dependents other than each other.
At 36 Hours
Antonio got the MRI that evening. We decided I should run home and grab what we needed for both of us to stay overnight, and we agreed with the doctors that if they got the results while I was gone and they were in any way bad news, they would wait until I got back so we could hear together.
Antonio called while I was packing: “They have the results; they say you need to get back here right away.” Even now the effect of those words can take me down. It was in that moment that everything hit—absolute excruciating fear and worry, my heart breaking for him, for us.
That is the moment I became a caregiver. Because when I got back to the hospital, Antonio and the doctors were waiting for me, and we sat on the bed while they told us that he had a tumor compressing his spine, and Antonio—the strongest person I’ve ever known, mentally and physically—began to shake. This was not a tremble but a full out rattle as if on the cusp of hypothermia and nothing could warm him. I wrapped my arms around him, telling him without having to say a word, “I’ve got you. We’re in this together.”
At 48 Hours
Honestly the timeline gets a bit fuzzy from there, but certain things stand out in my memory:
There was a CT scan, where they asked if I was pregnant and told me to wait in a separate area since there was a remote possibility I was.
I remember him being taken for a biopsy to determine which of the two kinds of cancer they suspected it was—one’s treatment includes surgery, the other doesn’t. I remember waiting in the hallway for ages until being urgently brought into the room only to see Antonio face down on the table, yelling that he couldn’t feel his legs.
I remember them telling me they had no choice and needed to get him into surgery immediately. (We would learn later that he had come within hours of being permanently paralyzed from the waist down.) I remember getting the barest of touches and choking out a “bye, I love you” as they wheeled him away.
I remember the endless hours alone in the waiting room, feeling like some other grown up should be there with me. The surgeon came to say it went well. He’d gotten as much of the tumor as possible and relieved the compression in his spinal cord, but it had disintegrated two of Antonio’s vertebrae (thus the pain in his upper back) and he now had a number of rods and pins in their place.
I remember the anger when the general practitioner’s office called to tell me they’d gotten permission from our insurance to move forward with scheduling an MRI, and me answering their request to make an appointment with, “Let me tell you where we are right now….”
I remember absolutely horrific nights in the recliner next to Antonio’s bed, filled with the constant interruptions of beeps and buzzes, of residents barging in during their rounds, of freezing because no amount of flimsy blankets could compete with the set temperature.
I remember the doctors asking over and over whether he’d been having headaches, learning much later that this was due to spinal tumors usually originating elsewhere in the body, usually the brain.
I remember his sister coming, her surprise at the degree to which Antonio did not want me to leave his side, even to get food for myself; her and I holding onto both of his arms while he practiced walking again; her telling me, “You need to be strong for him,” and me thinking, “Yes, right, on it, but also who will be strong for me?”
At 72 Hours
Antonio was released on Monday. The house was so quiet compared to the hospital and the “it’s just us” feeling was both a relief and an overwhelming weight. That’s when I figured I should probably take a pregnancy test, so I could say for certain I wasn’t in case it came up again.
The positive result was the end for me. It was just too much, too quick, and the emotion I’d been holding in for days could not be held back. The fear, exhaustion, sadness and worry were just overwhelming. I broke down completely.
It was simultaneously the beginning for Antonio. Here was the universe handing him a gift worth living for, and he was determined to take it.
