Our 13th Glioblastoma Cancerversary

Our 13th Glioblastoma Cancerversary
Mike coming home after 3 weeks and 2 days away

Thirteen years ago, today, I was sitting in my pajamas, scrolling through my Facebook feed, reading a spectacular number of messages from friends offering me their congratulations on my engagement. Mike and I had gotten engaged the night before, on the most perfect day of my life. There had been literal fireworks, of course, but more than that, the whole day was a flawless combination of us being the two of us alone, us being the two of us together, and us being the two of us in public, having fun, trying out our lives together. It was a gorgeous day.

As I scrolled through, my phone rang. Mike’s mother called. She’d just fielded a call letting her know Mike was en route to the hospital. A moment later my phone rang again it was one of Mike’s coworkers and softball teammates. Mike had suffered a massive seizure. I grabbed his car and sped down Lower Wacker to meet him at the hospital, moments after he became conscious.

I’ve written about this many times, in many ways.

I can’t tell you how much older I feel now than I did thirteen years ago. The passage of time has lost all of its meaning, and whenever I consider that girl, the 23-year-old who flew to Mike’s bedside in a flurry of tears and song, the girl who stood guard outside his hospital room and wouldn’t let in anyone wearing grief on their sleeve, the girl who planned a wedding and managed his medications and organized his schedule and yelled at him to pull his weight around the house and at work because he WASN’T dying and that meant he had the burdens of living, I feel overwhelming exhaustion.

How did I do it? How did I know what was needed, what was wanted, what was warranted, who kind of raw chutzpah does it take to become that person? Am I still that person now?

Thirteen years ago, today, we stepped into a world of brain surgery and chemotherapy and an ever-shifting set of goalposts. Thirteen years ago today, I became who I am. I made the choices to become who I am. I stopped being who I was.

Mike spent nearly all of the past month in the hospital. First for his fifth brain surgery, placing a shunt to relieve the pressure of fluid trapped in his ventricle. Then after a brief return home, because of a pulmonary embolism that grew, threw a clot into his lung, and caused an infarction. I have never seen pain like I saw those five days. I have never known fear quite the flavor of hoping, hoping, hoping that he managed not to regain lucidity enough to know what was happening to him as I looked at scans of collapsed lungs and watched him struggle to breathe.

He’s home now. Stronger than he’s been in two months. But there always seems to be a toll.

There was a COVID scare in there, as well. Five days I sat alone in my room, not permitted in the hospital, but also not allowed to be with the children. What would I have written during those days, I wonder, if I’d had the presence of mind to be able to write? I don’t know that I had a single coherent thought. I don’t know that I made it more than a few hours without breaking down. This month has been so hard, and if I had to choose between the five days of solitude, not knowing if my husband was safe and not being able to hug my children, I don’t know if I would choose those days or the five of watching Mike suffer.

It never seems to be safe for me to land. And despite him coming home, we are still waiting for it to be safe for us to breathe.

The first full day Mike was home, I climbed into his rented hospital bed with him. I curled up on his chest and belly, my arms and legs bent like a spider’s, my ear resting on his heart. With his left hand propped on my shoulder, he wound both arms around me, warm and close and quiet, and I listened to his heart beating the way I did nearly thirteen years ago, when he was first going through treatment and didn’t know how little time he was supposed to have. I remembered our cool basement bedroom in Pilsen, the light coming under the blackout curtains I made for him, his breath even and unbothered. I asked him then if he believed in Heaven.

“All I want is to end up wherever you are,” he said.

I was better at holding back tears thirteen years ago. Another youthful energy that is slipping away from me.

My therapist is an indigenous woman, trauma-informed, and formerly worked with incarcerated people. Sometimes I argue with her, because I argue a lot. Usually, I listen to her, because that’s what I’m supposed to do, and I trust her. Sometimes I even follow her advice. Sometimes.

I appreciate her perspective.

“Do you think 13 is an unlucky number?” she asked me.

“No, I don’t think I do. I think it’s an incredible number. He was supposed to have a year and a half, and to make it to thirteen years isn’t unlucky, it’s spectacular. If somebody had told me thirteen years ago that it’s what we’d have, exactly thirteen years and no more, I’d be grateful. I’m grateful now.”

She told me that in her culture, 13 is a meaningful, powerful number. The number of moons in the year. A number associated with the sacred feminine. A number to be honored.

Embarking now on the fourteenth year of our lives with glioblastoma, I wish I had pointed out to her that the anniversary is the end. The thirteenth year is over. What meaning does the next one hold?

Thirteen years ago today, I woke up happier than I had ever been in my life. I was going to marry my best friend, my favorite person, the man who saved me from myself like a knight errant on a white horse. I woke up in the glow of pure bliss, supreme certainty. He kissed me goodbye, long and lingering, his arms warm and strong, his hair thick and still damp from the shower. I could feel his dimples smiling into me with my eyes closed against the morning glow under the curtains. Goosebumps climbed up my shoulders as the ceiling fan spun, and he whispered to me, “Good morning, Panda Bear. I’ll see you after work.”

“Don’t go, fiancé,” I whispered back, knowing that the word would stop him in his tracks, that he would have to sit with it, revel in it, that it would cling to him like the water in his hair. “Future husband.”

And he kissed me some more before doing what he always did, always does, the right and proper thing. He tucked my arms back under the blanket. He kissed me again and left the room. He walked up the stairs as I sang him love songs, chuckling to himself, because he wouldn’t be late to work for something as silly as my being romantic the morning after we got engaged.

And the next time I saw him, the world was smaller.

It’s a difficult day. It’s Mike’s Cancerversary. Most years we throw a party, we drink a little too much and hug all our friends and celebrate that Mike is still here.

Mike is still here.

But there are no parties. No hugs from old friends. Despite the state opening up, it’s simply not safe. Why on earth would we risk death from the virus when we have managed to avoid it so long?

Mike is home and he can rest. And hopefully, the exhaustion of this season will begin to fall off of us, and we can try to find whatever sacred there is in fourteen.

 


 

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You can read more about love and illness here: Yesterday I Learned My Husband is Supposed to be Dead

Read my most recent post here: Singing While the World Burns

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