The first day I could walk post-transplant I was ready to ride. The wind in my face, the playful freedom of a bicycle felt essential to renewing my lifeforce. I just needed a boost. Evan and I shuffled to bike shops until we found her. A Specialized Vado e-bike, in Mason City, IA. The first time riding her I came alive, powering up hills as my weakened limbs and lungs would require a detour, woohooing down city streets, a million miles away from hospital beds and waiting rooms. Hope stirred. Maybe the athlete still lies within this worn-out body. Maybe I can ride RAGBRAI with my friends in 40 days. Maybe this nightmare is over. I bought her. I decked her out with a sweet basket up front that held a giant bright teal bag. I named her Freeda. For peace. For freedom.

Peeling off my bibs to hop in the shower after our third ride together was when I noticed my belly button looking a little off, my ‘inny’ more like an ‘outy’. Pressing down it felt hard to the touch. My first thought was a hernia. Maybe I’d gone too hard, too fast post-transplant. Knowing I’d see the doctor in three days, I didn’t think too much of it. The next morning I woke up to a terrible headache that parked behind my left eye. Huh. I’m also pretty sure my belly button is poking out a little more. Weeks out of transplant, I chalked it up to side effects that could last for six months. By day three, my belly felt like it was starting to swell and my vision in my left eye went double. It was the PA that I saw in the hospital for our routine check-up that day. She examined my belly, we discussed my eye, and she asked a few questions. I left that day with the advice to stop taking melatonin to help with headaches and to watch for changes this next week. Done.

Looking back now, I was asking about going back down to once-a-week blood tests and scheduling my PIC line to be removed at that same doctor's appointment. Even after everything we’ve been through I could not imagine what was happening was cancer creeping back. It had been less than three weeks since the transplant phase had wrapped up. I was still floating in a space of assuming side effects. After all, I’d been stripped down to nothing as the cancer-fighting t-cells went off to do their work. This was the cure.

By the time I saw Dr. Mou the following Tuesday, my abdomen was swollen so profoundly that I could easily be mistaken for being 7-9 months pregnant. Still plagued with all-day headaches, I was seeing double out of my left eye which was swollen and bloodshot. “This isn’t a hernia”, said Dr. Mou in the tender, deliberate way only he can, “I think it’s best we run all the tests.”

Finding the only sun in the waiting room…like the cat I truly am.

The MRI and PET scan happened on the same day. Evan and I waited in our sunroom, pretending to read books waiting for the call. Of all the life/death calls we’ve had since this journey began, this was the one we were the most chill about. It just cannot be cancer again. Impossible.

I remember only three things about that phone call and the remaining what I imagine was a long night that followed. I remember how sad Dr. Mou sounded and how I felt a strong desire to comfort him. I remember him saying, “the margins are thinning. You’ve already been through so much. Are you sure you want to do this?” and me saying “Yes. I have so much life left in me.” I remember hanging up the phone and looking out the floor-to-ceiling windows onto the yard to watch a small bunny run under a blooming hasta in the garden next door. I remember thinking this isn’t a bad place to die, next to these windows, watching nature do its dance.

I lost track of the days. It felt like I’d slipped out of the world and into a tight cell, enprisoned by anger, fear, and the sense that I am an innocent person with a death sentence and no one is coming to help. Evan was in the cell next to me, a cell of his own and we couldn’t save each other this time. The hurt was too big, expanding like the universe, growing never shrinking. Sure we sat in waiting rooms, we learned of treatment plans, and we talked with family but all those conversations are lost to me now. I’d stepped out.

It was a bird that brought me back. I felt I was being watched in the way one does when I looked left out the window to see a tiny bird looking in at me. It wasn’t any special bird, a tiny sparrow, brown and slick and indiscrete. It saw me and I it and we just….stared. When it flew away I saw the sky, the fluffy white clouds moved along by a strong breeze, shape-shifting through a bluebird backdrop. Then I saw the trees waving at one another. Eyes closed. Deep breath in. Deep breath out. I turned my head to Evan sitting to the right of me. “I used to be the center of people’s love. Now, I’m the center of people’s pain. I’m so sorry.” Then I cried the most powerful, body-shaking, stress-relieving, ocean of tears of my life. I dropped to my knees and Evan helped me up. “You are still the center of love. That’s why we all hurt so much.” We wept until we were empty, until the silence in the house transformed from a tight grip to an open hand.

Since that day we’ve walked through what each day, each moment, asks of us with a lighter air - and it’s asked a lot. The MRI news was a welcome relief that cancer was in the soft tissue behind my eyes and not in my central nervous system or brain. The relief was short-lived as my abdomen became so distended I began having difficulty breathing or moving.

Hospital stay #1: 6 days

Red bag is chemo. For all my ‘80s peeps out there, I call her Red Sonja.

Procedure to drain 1100 cc of liquid out of my abdominal wall. Missing the right spot to drain twice, I was horribly bruised but felt instant relief.
Started chemo, my 5th different variety since May 2021. No punches were pulled, the doctors told me this one will be especially difficult.
In escalating efforts to help me have a BM, I received an IV medication given to opioid addicts suffering from constipation…then proceeded to have the opposite problem for 5 straight days.

“The margins are thinning. You’ve already been through so much. Are you sure you want to do this?”

Ten days. Ten days back at home and back in a cell, this time the cell my own body. Stillness hurt only slightly less than movement and movement required help. Every drink of water or bite of food was a battle against nausea. I have to eat. I’m skin on bones. Nearing 100 pounds. The mirror scares me. Hayley, if you don’t drink you’ll be back in the hospital. Courage, Hayls. Take a sip. With reading or TV even too difficult to follow, I had breathing and I had thinking. I’d imagine that this feeling of death meant the killing of cancer. I’d picture myself in the mountains, sturdy and climbing. But what comforted me most was imagining death; imagining my body free of pain, being carried in a loving light, free of pain and thought. I questioned if I choose wrong. Maybe I don’t want to do this. Maybe I can’t.

Then another day would pass. I’d wake up alive and notice something beautiful and be renewed with remembering who I am or at least who I was. The pain will go away eventually, I don’t get to decide if the release will come from cure or death. But. BUT. I will make it known to the Powers That Be my preference then ride today’s waves.

Mom and Evan took turns watching over me. Mom would come over to move my joints and limbs, rub my numb feet, and hold my hand. Evan kept our life and home running, doing the difficult work of feeding, clothing, and carrying me. Each day was another little milestone until I was free from the cell with managed expectations. “Good weeks” are not what they once were of bike rides, hikes, and Mexican food feasts. They are now not having to use a wheelchair, climbing the front stairs without help, standing to brush my teeth.

I didn’t need a wheelchair when we went in for a routine blood test and platelet transfusion two Mondays ago. The weekend before I’d started having a few fevers and pain when I’d pee. Again, symptoms of chemo and having these tubes in my back? Something new? We never freakin’ know. After the transfusion, they took the routine vitals: temp 103. Shit. A neutropenic cancer patient with a high fever is a one-way ticket to the ER. I was angry. Why can’t this just be easier for me?! This is supposed to be my strong week, why now?! That anger was replaced by terror when the ER rushed me back and took my vitals again: temp 103, heart rate 153. Am I dying? Is this it? What’s happening?

Hospital stay #2: 8 days

Mom captured this moments after I learned I wouldn’t be going home on Friday.

I have an infection, but where? How? Multiple visits per day from Urology, Oncology, and Infectious Disease teams answering questions piecing together what happened. They determined my kidney tubes got infected causing a UTI that spread to my bloodstream.
Another five days of fevers with cultures taken of my blood, different antibiotics hung, and lots more doctor visits.
With a release ready for Friday, I learned that I needed four more days of at-home antibiotics that required partnering with social work and home health, both of which were not working on weekends and gone for the day. Healthy, I sat in the hospital all weekend.
Monday I learned my tubes needed replacing in the morning, keeping me in the hospital until Tuesday AM. Scheduled to go back in for chemo on Wednesday, imagining another five days inpatient or two weeks in this bed without a trip home was unfathomable. Graciously, my blood test showed the chemo is working and Dr. Mou delayed my chemo for one week. Tuesday afternoon I was free. I wept as the sunshine from the car window warmed my face.

I had registered for RAGBRAI the first day I could during that same December I was in remission. I signed up with friends from Oregon and Iowa, a reunion tour, a celebration, a mark of survival. When cancer came back the first time, I would do the math in the hospital during the transplant, figuring I could still do some days if I could get an e-bike and build my strength when I was in remission again. Then, Freeda. Then, relapse. The summer of unmet expectations became the hope Evan could ride and that maybe, just maybe, I could meet my friends in Charles City, a RAGBRAI overnight town and Evan’s hometown, staying at his parent's house. It took a lot of convincing but Evan finally decided to join our old friends and now new friends on the RAGBRAI adventure, sending me pictures of the Iowa countryside at dawn, his favorite road foods, small-town sights, and people. Free of chemo, mom and I drove to Charles City and spent the full day this past Thursday in the front yard, under the shade of the Schmidtke’s large tree laughing, snacking, and telling stories of the road with the crew. For the first time in months, I felt like Hayley. The conversation wasn’t about sickness, death, or survival - it was about sweet corn and pork chops and inappropriate RAGBRAI team names and trailer camping mishaps.

The sun was setting as the 20 of us sang happy birthday to my lifetime BFF Evonne. As we giggled and ate cake a wave of love welled up in my chest, tears flowing. As Kate Bowler says, life is so beautiful and life is so hard. It was beautiful that carried mom and me the 90-minutes home that night, buzzed up on cake, the twilight pink casting a twinkle over the cornfields, the sky billowing with cotton candy clouds as far as the eye could see. It was beautiful as mom checked I was tucked into bed like she did when I was a girl. It was beautiful as I lay snuggled in bed, the moon lighting up the mature honey locust outside the window as it swayed in the warm evening breeze.

The birthday girl and a peek of the pristine Iowa summer sky.

Chemo comes around for me again on Tuesday and it will be so hard. My wish is that I may know I will survive the suffering, that there is beauty for me even within that pain, and I can weather it with less fear and loneliness. As for treatment, the process has begun to search for a match in the bone marrow database for me to get another transplant. If you haven’t already, please consider signing up to be a donor for people like me by going to BeTheMatch.org.

As I wait, I dream of bikes, twist ice cream cones, and kitty lap time. Ahhhhh.

Relapse: take 2.

Put yourself in the way of beauty.

Moving in & Moving on