How I became a cancer caregiver: Part 2

I’ve written about how we learned my husband had cancer, but as any caregiver will tell you, diagnosis is only the first part of the story.

And this one hasn’t even gotten there yet. We left off with the night we got home from the hospital after Antonio’s surgery to remove a tumor from his spine. The same night I found out I was pregnant, when he found his reason to fight, and I lost my shit.

In terms of the usual cancer journey, so far we’d been spared. The emergency tumor discovery and subsequent surgery shortened the usual, tortuous waiting-for-results period from days or even weeks to mere hours. We didn’t yet know what type of tumor it was, but we knew it was malignant and destructive.

Diagnosis & treatment: The mindfuck begins

The biopsy ended up confirming that Antonio’s cancer was an anaplastic ependymoma, a malignant tumor of the central nervous system, usually appearing in the brain or on the spine.

Treatment over the next weeks and months included chemo in pill form, followed by a shit ton of radiation. You think you know what this means. Most people have heard of chemotherapy (granted, I’d never heard of a chemo pill before), have a sense of what radiation entails. You think you know, but there are things throughout the treatment process that only those who’ve been through this would recognize.

Like when you’re told you need to make an immediate decision about freezing sperm and future children because you may not be able to have them after he goes through radiation.

Or that your husband is radioactive, so, especially being pregnant, you need to stay far away from him despite being his only caregiver.

Much less that when his course is complete, he’ll bring home a creepy-ass mask that will stay in the closet for the next 15 years because what if.

That you will spend hours facing each other, moving around the house while holding hands and locking eyes…as he regains his ability to walk.

When you can take FMLA but because you’re early on in your pregnancy you’re unable to explain why you’re hesitant to do so, on the chance you might need it more later. And that this feeling will happen even when you’re not pregnant, because what if.

Or that the cost of one bottle of chemotherapy pills is $5,000. And while you’re unbelievably covered by health insurance through work and ridiculously grateful for it, the fear of a job loss and potential financial ruin is never far.

When your closest friends who you always swore you could count on are nowhere to be found, and others whom you barely know show up in full force.

Yet despite how soul-shatteringly hard it was, both Antonio and I look back at that time as one of the best of our lives together. We discovered a support of each other that was so profound, so rock solid and true that it would help us through other hard times to come. And we felt such overwhelming gratitude—for his recovery, for his doctors, for our friends and family, for each other.

Our daughter was born 8 months later. It wasn’t until after we’d named her, seen her face and felt her miracle, that we learned her name means “bearer of good news.”

As Antonio’s MRIs to look for any recurrence shifted, moving from every three months to every six, then to yearly, we settled into “normal life” again. The treatment worked—he was clean. We brought Antonio’s two older kids into our lives, had another child, a son; we changed jobs and moved on and felt more safe and sure with every passing year.

Recurrences: Everything old is new again

If I have one piece of advice for those raising young children through a parent’s cancer, it would be this: Do not put said parent on the car’s speaker phone when you ask for MRI results.

Even if it’s been a decade since his diagnosis. Even if you’re eager to celebrate 10 years of no recurrences. Even if you’re expecting the news to be the same non-news it’s been for years.

Antonio’s response of “They saw something,” immediately sent our kids into a panic while I almost crashed the car attempting to take the call off speaker and make sense of what I was hearing.

The “something” was a spot that the oncologists had seen the previous year, and it had grown, causing concern. We didn’t even know this was a possibility; they hadn’t told us anything about it the year before, preferring to mention when they knew it was an issue instead of causing us a year of possibly unnecessary worry.

We thought we knew what to expect. We thought we knew what a spot on an MRI meant and how to handle it. We’d been through it; we spoke the language now, had been on the inside. We thought we knew.

That’s when we learned another hard truth about a cancer journey: you never fucking know.

The first difference was THE WAITING. On our first go round, surgery took place within hours of the tumor discovery. This time we experienced the agony of the wait, from discovery to surgery, from biopsy to results.

There’s this thing that happens during THE WAITING. On the one hand you spiral. Your mind does all the things—runs through every ‘what if’ scenario, every fear, every worry. It’s both overwhelming and a recognizable part of the process.

As a caregiver, you also immediately go into planning mode. You think through every single logistic that needs tackling: who will be with the kids while you’re at the hospital, how will you get them to and from school, what will you do about work, how will you manage meals, who will walk the dog, etc. When your local tribe is small, or nonexistent, this becomes an exercise in figuring out how to split yourself into a million pieces so nothing and no one depending on you gets let down.

On the other hand THE WAITING also means an agonizing state of inertia. Diagnosis and treatment at least feels like you’re doing something—tackling the problem, taking action. Waiting for surgery, waiting for the diagnosis to find out if your world has shattered again and exactly to what degree is a pure mindfuck with no remedy but distraction and patience.

So we repeated the cycle starting with surgery. The difference now was that we had 2 young kids who needed me with them as much as Antonio needed me in the hospital. Two young kids who were scared and needed him home and needed stability and routine—the last thing we could provide.

This time the surgery was more complicated, requiring plastic surgery and creative closures to ensure that the already-compromised muscles and skin could hold.

This time too our immediate family had grown. Antonio’s older children had become young adults, with partners and a grandchild expanding our circle. This time instead of counting the hours by myself in the waiting room, I had others by my side the entire time. We waited and worried together, took turns when he was finally able to have visitors, shared the late nights punctuated by coffee and supply runs. It was an unfathomable relief.

We repeated the cycle with waiting for biopsy results. This time, however, the wait was extended because advances in genetic testing had been made in the last 10 years and our oncologists wanted more detail than what the pathology was showing.

The new normal is anything but

This time, instead of another anaplastic ependymoma, Antonio had an ATRT (Atypical Teratoid Rhabdoid Tumor). In fact, he never had an anaplastic ependymoma—genetic testing on samples from the first tumor revealed it to have been an ATRT as well.

With that we entered an entirely new territory of treatment. The oncologists had never seen this before; there was no protocol.

We repeated the cycle of radiation. This time Antonio’s high dose was mitigated by the fact that on his first go round, his radiation oncologist had already given him “the most radiation I’ve ever given anyone.” He could only add so much.

We did not repeat the cycle of chemo. This time the oncology team advised against it. If they gave him the same as what the pediatric protocol for ATRTs calls for, he would be in the hospital for a year due to complications, they said. We would lose all quality of life. They held off.

And then we resumed “normal life” again, only to find later that our new normal was anything but. Over the next 3 years he had 4 more surgeries, first for a recurrence assumed to come from microscopic leftover cells that escaped the last surgery and radiation, then to repair broken rods from an accident and manage subsequent complications and infections.

He received immunotherapy treatment for close to the maximum 2 years, until complications required an early stop. I learned how to pack a wound that wouldn’t heal, how to monitor fluid retention and administer antibiotics through a picc line. He lost more levels of mobility and would fight to recover from surgery to full time physical work over and over again, with increasing exhaustion and pain each time.

Our entire family suffered a mental toll as well, which we’d only realize years later. Fortunately we found resources and support for families specifically for dealing with cancer that helped immensely.

At one point I asked the oncologists, “What’s the best way to describe the state of Antonio’s cancer?” Most people understand the idea of “remission,” and I know that’s what they want to hear when they ask, but there is no remission for ATRTs.

“Active monitoring” is the best we can say. Antonio gets an MRI every three months. I feel differently about them now, with the fear increasing the longer his scans come back clean. He’s on a constant mission to find ways to mitigate the pain, to relieve the weakened neck muscles from the seemingly simple task of holding up his head.

Being the “SupermAntonio” that he is as well, he does this while also working full time, exercising daily, running nine miles three times a week in addition to the three miles he runs with our kids every other day before school, and taking karate with them in the evenings.

I found a therapist who has experience with cancer patients and their families and it’s honestly been life changing to finally lift up the rug under which all of the emotions from the past fourteen years have been swept.

We carry on, knowing that oncologists expect his cancer to return because it’s already done so before. Knowing that he’s already defied expectations before. Knowing that another recurrence is both expected and a complete and utter unknown.