Being a mom AND a caregiver means taking on the impossible, because there’s no other choice

It’s the type of unwelcome sensation you see depictions of in movies or read descriptions about in books. The air in the room grows thick, your legs turn to Jell-o, and everything goes spotty and hazy at the same time. You can’t breathe, you can’t think. Your back begins to sweat. Your heart is pounding inside your chest so loudly, your ears feel full of foreign vibrations thrumming through your entire body.

You grab onto the worn hospital bed, grasping for anything to steady yourself, because this isn’t about you right now. You can’t pass out right now, despite your body urging you to let go and be swallowed whole. You have to hold on, because your husband just received the most devastating news of his life. Of both your lives.

“I’m so sorry to tell you this, but the CT scan found a mass in the parietal lobe of your brain.”

I took several deep breaths and tried to process what I had just heard. What? A mass? In his brain? He just passed out for a few minutes. We thought it couldn’t be too bad if he was back to walking and talking and being himself just moments later. He’s a young, healthy, father of two. How could this be?

My mind began swirling with thoughts faster than I could think of them. He had lost consciousness while his car was in park in the ATM line at our local bank. He never puts it in park; he keeps his foot on the brake like we all do. He had just dropped our daughter off at school five minutes prior. What if this had happened while he was driving? What if it had happened with our sweet girl in the car? I shudder to think of the alternate realities.

Learning he had a brain tumor was so much worse than anything I could have possibly fathomed. I looked over at my husband, the man I’d slept next to for 15 years, the man I danced to Van Morrison with at our wedding reception 8 years ago. The giant, Dan Connor-sized man who had held both of our tiny newborn daughters in his big bear hands and wept with joy and wonder.

He had a brain tumor. A BRAIN TUMOR. And that was just the beginning.

The coming days were a blur of information, worry, panic, hope, and fear. Radiologists told us it looked benign, the neurosurgeon said it may not be a tumor at all but multiple sclerosis. My husband, who suffered no symptoms whatsoever before this, ran laps around the neuro floor for days on end in order to quell his anxiety. He hated being apart from us in that foreign, sterile room as much as we hated not having him at home with us.

I had spent the entirety of our relationship lamenting his smelly shoes and endless piles of dirty clothes on the floor, and during those days I found myself clutching his slippers to my chest and crying in the closet on top of his Pittsburgh Steelers hoodie collection.

It was all very Miss Havisham. But when your husband is facing a full craniotomy and tumor resection, it’s OK to soothe yourself however you need to.

In case you’re not familiar with post-brain surgery recovery, allow me to paint you a picture. It’s brutal. For the patient and for everyone who loves that patient. Despite the fact that my husband was still in misery from the pain, he was discharged into my care just two days after his skull was drilled into and his brain was sliced open. The hospital staff didn’t even wheel him to the parking garage—they handed me the reins right there on the neuro floor and I had to push my 330lb, freshly-sliced husband through the maze of hospital elevators and hallways while having a minor panic attack over what we were all in for when we got home.

Later that night, I wept on my father’s shoulder for, perhaps, the first time in my entire life. ‘I don’t know how I’m going to do this.’

And that was my introduction into being a caregiver for my spouse. They tossed me into frigid waters without a life vest and said, “Figure it out, lady.”

My husband, anxious to get home, was also doped up on a whole menagerie of drugs. Two of which—his anti-seizure medication and the steroids—made him “cranky,” I was told.

No. Cranky is when our toddler misses her nap and yells at me in Cocomelon. This was not cranky. This was more like, “Who the hell is this Roid Rager and what has he done with my funny, goofy husband?” I can’t remember exactly what he was yelling about, but I do recall he was speaking to me in such an abhorrent way I started crying in the parking garage. He wasn’t himself. I was overwhelmed and terrified to drive him home and deal with this all by myself, with two young children waiting at home to see their dad. He didn’t care; he kept raging on.

Related: How do we tell the kids I have cancer?

Reader, I contemplated (for the briefest of moments) simply letting go of his giant wheelchair and letting him end up wherever he ended up. If that was a concrete pillar in the hospital garage on a freezing February night? So be it. I was maxed out already.

Alas, I didn’t want to be arrested, so I helped him get into our car as best I could. I drove home like I was trying to qualify for Turtle NASCAR, taking each turn and bump as gently and delicately as I could. My husband, who had 30 staples in his head, a skull in multiple pieces, and was under the influence of several tranquilizing drugs, yelled at me: “Just let me drive, I’m fine.” I screamed right back at him, the brain surgery patient, and he ended up throwing up out the window for 1/4 of the way home.

It took 3 grown men—my dad and two of our neighbors—to help him walk into our house as our girls, thrilled to see their dad after a long week in the hospital, looked so very worried. I hugged them and tried not to let them see my tears.

“He isn’t himself, Dad.” Later that night, I wept on my father’s shoulder for, perhaps, the first time in my entire life. “I don’t know how I’m going to do this.”

Luckily, I wasn’t completely alone during those weeks. My family and friends swooped in to help, friends and family stopped by every day for a month with something to eat and puzzles and games for the girls. I could write an entire essay on the people I love dearly and how they showed up for us during our time of need, truly.

Once he recovered from surgery enough to be more like himself (thank the universe) and his pathology results came in, we received the diagnosis: It was cancer. A grade 3 anaplastic astrocytoma with an IDH mutation and methylation, to be exact. Grades 1 and 2 are slow-growing and benign. Grade 3 means the cancer had developed somewhat quickly, and was aggressive. Grade 4 is a glioblastoma, which has an average survival rate of just 8 months. We learned that due to his genetic mutations, he had a higher chance of responding well to treatment—6 weeks of chemo and radiation every day, then maintenance chemo after that for 12-18 months. We weren’t given a definitive lifespan prognosis, but we were told “people with this kind of cancer can live a long time.”

While people had come out of the woodwork to share their concern, feed us and spend time with the big guy, as anyone who’s ever experienced a traumatic event like this knows—everyone fades away after a while. They go about their own lives and jobs, as they should. Our parents aren’t old enough to be retired yet, so we were very much on our own. And before you know it, it’s just you and your situation. All alone. And you have to find a way to survive it, because there isn’t another option.

When he was too sick and tired to get out of bed for most of the day, I was back to working and parenting and housekeeping while setting a bajillion alarms for medications and ice pack swap-outs and buying blue-light glasses and sunglasses, because for about 4 weeks my husband saw nothing but bright pink spots. The normalcy of working again and finding a new routine helped a bit, but there comes a point in every caregiver’s journey when you desperately, fervently wish there was a lifeline out there.

It was hell. Absolute hell. But I didn’t have time to think about it—I just had to find a way to exist in it.

I remember Googling “childcare for cancer patients” because surely a service like that should exist, right? When a parent is fighting for their life, there has to be some sort of Mary Poppins-esque agency that comes in and distracts your children with a buoyancy you can’t muster up.

It turns out, such a service does exist. In Canada. Unfortunately, we live in Pennsylvania and the U.S. healthcare and childcare systems are, at best, a criminal disaster. So that wasn’t going to work out.

I attended work meetings where I could hear my husband vomiting from chemo upstairs. I declined to chaperone classroom parties and attend PTA meetings for my daughter’s school, because I had to be home. I couldn’t leave my daughters home alone with their dad while he was recovering from surgery or when he was too sick to parent, so I had groceries delivered and basically didn’t leave the house for two months.

I fielded questions from my kids about why Daddy was so tired, why his hair was falling out in patches, what “cancer” means, why he had to go to the hospital for a “headache,” and if Daddy was going to die—all while working, cooking (well, mostly ordering out), mothering, and updating precisely 5,000 people on his health at any given time.

It was hell. Absolute hell. But I didn’t have time to think about it—I just had to find a way to exist in it.

It’s been a year since my husband’s seizure and diagnosis. He still has 5 days of chemotherapy per month, every month, indefinitely. So for a week every month, he’s down for the count. Even though his hair has grown back, he’s resumed work and all of his old hobbies and habits and is singlehandedly refinishing our basement right now, we are reminded his cancer battle isn’t over. Every single month.

And every three months, he has an MRI of his brain to monitor the tumor cavity for growth. Even though the entire tumor was removed during his craniotomy, cancer cells are so microscopic they can’t be seen. Those sneaky little jerks can swoop in at any time and ruin everything. Which we are reminded of every three months, like clockwork.

All of that, and I haven’t even covered the mental health part of being a caregiver. I suppose because when you’re a caregiver, you don’t have time for self-care. You feel guilty for feeling sorry for yourself for a second because you’re not the one with cancer. Your mental health is on the back burner until it isn’t. Until it’s screaming so loudly and demanding to be heard and felt, you nearly collapse under the anguish of it all.

Related: On the hard days, you still show up

At some point during this hellish year, my therapist warned me about the aftermath of medical trauma: “When things calm down and get quiet, and they will, sometimes things can fall apart mentally.”

And it did exactly that, this past fall, for both my husband and myself. Luckily we have excellent therapists and have found a combination of life-saving medication for each of us that helps unravel our knots of anxiety and eases the heaviness of depression.

If you’re a mother and you have a spouse with cancer, or you’re a caregiver to your spouse or a close loved one—please know I see you. I see you and I know just how insurmountable it all feels. I know the anger and despair of “How could this happen?” and “How is there no help for this?”

I know how defeating it feels to realize that every single moment of joy you’ll feel for the rest of your life will be marred just the tiniest bit, because you’re forever going to be looking over your shoulder. Waiting for more bad news. Because the unfathomable happened once before, so what’s stopping it from happening again?

I also know that sometimes, it’s OK to mutter things like, “If cancer doesn’t kill him, I will” because hey, that’s real life! For me, it was like the worst man cold of all time multiplied by pi.

He wouldn’t have wanted me to ever become his caregiver because he wouldn’t have ever wanted to get sick. So if you’re feeling guilty for feeling resentful, don’t.

And it’s OK if your kids are eating their 10th DoorDash meal of the week. They don’t like your cooking anyway, remember? Who cares!

It’s also OK to use this experience to define your boundaries with people. For example, I shut off every single notification on all of my apps because I just couldn’t keep up with the updates and questions anymore. I also stopped talking to some people altogether, because boundaries can be customized for every situation and person.

It’s OK to fight with your spouse, even if they’re sick. It’s OK to let your kids watch 4 hours of Bluey and eat ice cream on the couch when you’re tired or busy. It’s OK to accept help in any and all forms because that is something you won’t ever regret.

It’s OK to not love being a caregiver. My husband certainly never expected to be diagnosed with brain cancer at 40 years old, and I certainly didn’t think I’d be taking care of him after having his skull sawed open, radioactive laser beams burning through his scalp, and ingesting literal poison day after day.

He wouldn’t have wanted me to ever become his caregiver because he wouldn’t have ever wanted to get sick. So if you’re feeling guilty for feeling resentful, don’t.

Most of all, know that you’re not alone. This too shall pass. And when it feels like it won’t, reach out. Reach out to your family, your friends, your therapist, your God, your neighbor, or a nurse at your children’s pediatrician’s office (No, I didn’t have a nervous breakdown in an exam room during my toddler’s 3-year check-up, why do you ask?).

Being a caregiver and a mother means making the impossible possible. Because this country doesn’t offer any other option.

Just remember to take care of yourself, too. At some point, you will feel whole again. You will feel like part of the world once more and not trapped in your own little bubble. I promise. And when you do, please know I’m cheering you on every step of the way.

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