The violent chapters.

On my moms bathroom floor, bare assed, legs folded outward like a butterfly, wearing only a sweaty t-shirt I’d worn for two days too many, my hands equally sweaty as I steadied myself to make the single, high-stakes cut of the catheter tube to a manageable length. My hand slipped, releasing the pinch I had on the tube and releasing bloody urine as a Carrie-like splash all over my face, the walls, and Evan who was hovering over me as a constant cancer wingman. Doe-eyed, I looked at the mess. The reality of the situation zoomed way out, seeing it all. “Is this what my life is?” I wimpered, to no one.

I’ve waited too long to write this update. Now the story is too long. Too many locations. Too many overnights of beeping in hospital rooms. Too many mini-moments on bathroom floors that are ugly/funny/tragic/painful/worthy of their own entry into this chronicle of my time with cancer. Too much begging for mercy. For ease. For relief. Please, tell me how to pray in the right way to make the suffering stop. I just want my life back. I’m beginning to forget what I used to love, how living a day of doing things used to feel. Where do I go in those moments? And why oh why has each chapter of this cancer resurgence felt like it’s been violent, played-up for the movies, dramatic in the level of pain, and in quirky, “we’ve not seen this before so I guess we’ll try this” doctor reaction and subsequent resolution?!

Yes, there is too much to tell but to make this easy on us all I’m going to share the story in three very short chapters.

Chapter 1: Pee tubes

Chapter 2: Why are things in your guts always described by sizes of fruit: The orange-sized blood clot.

Chapter 3: Stop. Puking.

Now taking submissions for names of these bad girls.

Chapter 1: Pee tubes

Driving back and forth to Iowa City for regular blood tests and platelet and blood transfusions, we’d had a Tuesday appointment with our oncologist who was SO blown away by my low markers for cancer that he thought, hell, why don’t you two kids take 4 days away from this place. SPRING BREAK! While it wasn’t going to be Cabo and beaches, Evan and I had big dreams of laying in the sun, of him riding bikes, and me shopping for art supplies and books at my leisure. We’d not had a break from the intensity and needed one. *she says casually with the confidence of someone that doesn’t knock on wood after every statement of hope (are there people that don’t do that? Risky.) The week of March 14th was supposed to be a free week, filled with beautiful weather, Evan’s 42nd birthday, family time, and slow mornings.

On Thursday, I started to feel some ol’ rumbles in my tumbles. Something was afoot. I chalked it up to little constipation, a side effect from the pain meds. Sunday morning I woke up and started vomiting and was in a ball, reminiscent of the OG days pre-cancer. Just hours after Evan headed out for a 70-mile bike ride, I called him to turn it around and meet me in Iowa City where Mom was taking me to the ER.

Two handsome doctors** palpated my stomach, sent me to get a CT scan and send me back to the waiting room to lay in a little ball on a hard bench for 2-hours as the ER was overflowing with 60+ people. It was hell. A solid 8/10 pain, head in the lap of mom and eventually Evan who came to take over duty as I rocked myself and cried, repeating over and over again “I don’t know what to do. Please make it stop.” Ugh, Evan and mom. Can you imagine someone you love like this and being totally powerless? Horrifying.

Within minutes of each other, each handsome doctor rushed out to me apologizing. The CT scan revealed the mass that we were aware from the PET scan living in my lower left abdomen was pushing on my ureters, the tubes that drain urine from the kidneys to the bladder. The pain I was feeling was my kidney swelling and not processing things correctly. Miraculously, they found me a bed and some pain medication, and my journey with the UI Urology and Interventional Radiology departments began.

The decision was made to put nephrostomy tubes in my kidneys. These are tubes and a catheter that runs from my kidney, out my back, and into a bag where urine is collected. It was also decided I’d begin some mild radiation on this mass: 10 rounds of radiation with quick relief after the first three or four sessions. I was admitted into the hospital where I would remain for another 9 days as I endured surgery to…install?…the bags on my back on both sides and to heal. The left side went beautifully, however, my right kidney was positioned in such a way that they had to poke it 3 times to place the bag correctly, creating a huge hematoma that made all the urine going into the bag bloody with clots…but more on that later. *Again, cue the ominous dun-dun-dun piano music.

The biggest question on our minds was how this would impact our journey toward transplant. In short: it won’t and it hasn’t. In fact, seeing how the chemo all but cured me of bone cancer but didn’t touch cancer in the uterus, it clarified for the doctors that CAR-T was the way to go and jump-started the process since we were already in the hospital. On the final day in the hospital, the transplant team inspected my veins in preparation for the harvesting of T-cells, and a week later after a 7-hour procedure - twice as long as usual due to my low hemoglobin from the hematoma - they were able to extract the T-cells needed for the transplant. The T-cells were California for some crazy sciency engineering shit, and when they come back next week, they will be lean, mean cancer-fighting machines. From harvest to transplant is about three weeks which is looking to be next Friday, April 22nd.

We set a record with those 9 days in the hospital and they were spent reading, sleeping, and bonding with nurses. I wept when I walked out, two weird bags and one catheter heavier, with a bag of medical supplies so I could flush my kidneys and a massive syringe and jugs of saline that Evan could use to flush my catheter and bladder if I ever complained of pain or discomfort. For the first time, I was scared to leave.

Rice Krispie treat FTW.

Chapter 2: Why are things in your guts always described by sizes of fruit: The orange-sized blood clot.

5: 30 AM: I woke up on fire.

Wondering around the apartment in Iowa City we’d moved into only days earlier, carrying my bags in my hands and begging Evan to get the syringe ready to flush me. My bladder felt like someone filled it to the max with lighter fluid and lit a match inside me. My catheter was still in, I couldn’t pee but every part of me wanted to, needed to. When I did, just blood dripped out of me and everywhere I walked through the house. In a panic, I started the same script from the hospital, “I don’t know what to do. Please help me.” As I wrenched in pain. We laid down a surgical pad, I laid on it too as he struggled to fill the syringe with saline. Phhhssssss, he pushed it in and I screamed. 10/10 pain. Pull back - nothing. It wouldn’t pull back. “It won’t pull back, Hayls. I can’t get it to pull back.” He started to cry, a panicked, fearful weep. “Tell me what to do, Hayley.”

“Call the ambulance.”

We were seconds from the emergency room. Literal seconds, as Evan tried to convince me to just get in the car. To do so felt impossible. Stairs? Putting on pants? Outside cold? Impossible. I’ve done many brave things in my life but getting into that car was to this day the bravest thing I’ve ever done.

Thirty seconds later he pulled up to the ER doors, ran inside, and a team followed him out to get me from the car. This is where I blacked out - not literally, but I have no memory of going into the hospital, of giving them my name, of a nurse I love seeing, talking to Evan, and touching me with her gentleness, worry, and sorrow for me. I was rushed to the triage room with a team of nurses to do an ultrasound and take vitals. “As I thought,” said another young beautiful doctor, “blood clot.” As quickly as they were all in the room, they all left and I was left in the room with Evan alone with 10/10 pain and a total inability to sit still. “I need help, I need help right now" I kept saying on repeat, wondering the room after tearing off my BP cuff. Again, I tried to sit to pee, and only dripping blood. This isn’t moving fast enough. Move faster. Finally, I couldn’t take it anymore and, with Evan pushing strongly against me, I opened the triage room door and yelled out into the huge ER unit “I need help right now, please, help me right now.”

It wasn’t long and I was surrounded again. I was given drugs that took me to a 9/10 and positioned for irrigation, a pee pad under my bottom, bottoms of saline, and the huge syringe made another appearance. Let the irrigation begin, baby!

I’ll spare you the details, but it was brutal. For what felt like hours but was more like twenty-ish minutes, a Dr. McDreamy type pushed saline in and pulled it out of my bladder, filling 3 bottles with blood clots and saline. He had to change my catheter twice, a not so twinkly experience on a good day but horrific when part of this cancer includes lesions in my urethra (Ummm, you came for the real shit, right - I know, this is rough). When we finished I had what felt like PVC pipe coming out of me and we were all traumatized. But I was out of pain. I was out of pain and we knew that I must be bleeding somewhere, that I’d be headed back to IR (Interventional Radiology that put in my pee tubes) for help.

And that was exactly what we did. I’m so grateful to that urologist for saving me from having to have surgery and to IR for doing the 2-hour procedure the next day to locate the source of bleeding that occurred when putting in that troublesome right tube that was draining blood from the hematoma into my bladder. Operation Blood Orange was a success. Ewww.

I was released last Thursday, catheter-free and with blood levels as high as they've been in a long span. Before I was released, I received one of two doses of low-grade chemo to supplement the radiation treatments. Dose two of chemo came on Monday. *cue final dun-dun-dun, and round ten, the final round of radiation was on Tuesday.

The scene of the crime AKA our new furnished apartment across the street from the hospital for all our “oh shit, we need the ER” needs.

Chapter 3: Stop. Puking.

This story is simple to tell but does get an honorable mention for one of the most profoundly shitatious eras of this whole damn thing.

I got chemo on Monday, a type of chemo that targets the cells specifically of lymphoma and specifically in my guts. Then, I got terribly horribly no good very badly sick. So sick l would sweat through the sheets during the middle of the day. Where I would take a sip of water and lose it immediately, out any variety of orifices. Where the idea of food made me sicker. Where we were afraid that we were going to need to go back to the ER to get me nourished or at least hydrated or it could get worse. Sounds hurt. Thoughts hurt. So I laid - for three days I laid, sweat, threw up, pooped, cried, and thought that if this is what life is, take me now. It moved me in that way, seriously. It moved me to a place I haven’t been but a few times in this whole journey, where I started to imagine the beautiful release of death, the lack of pain, the warmth, the love, and light, and that sounded pretty okay with me.

I will live, I want nothing more than for time, but it’s nice to know I’m okay to die too. Pain brought me all the way to the edges of myself and beyond.

In the radiation waiting room. A little soul extension.

Prologue

To the edges of myself and beyond. My therapist likes to text when she is thinking of me and it’s the thing I love most about her. We should all do that more.*** “You were hanging out with me as I transplanted strawberry plants to sunnier locales and replaced the blueberry bush that didn’t make it through winter.” I was hanging out with her, or at least part of me was. Huh. I’ve survived all chapters, I’ve met all these violent episodes and moved through them. It’s been more than survived.

Between the spaces of the facts of the past month, there were stories of funny tragedy, of tenderness, of quietly watching birds outside my hospital window, of the cute little CNA who has a crush on me, and the cribbage game with mom as we talked about our developing, loving friendship. You know what Evan said to me, splashed by catheter gross on mom’s bathroom floor when I said, “Is this what life is?” He sat on the floor next to me, looked me in the eye, wiped the gross off my face, and said, “yes, this is an experience. We are having an experience and we’re doing it together and that’s what life is.”

I Imagine those moments of acute pain, the dark darkness where I forget myself, that maybe those are moments my soul is out gathering strength to remember. It’s with my therapist in her garden, looking over her shoulder and getting her fingers dirty. It’s on the mountain with my girlfriends when they say they thought about me. Maybe when we think about someone, it’s their soul coming to check in on what experience we’re having in this life and getting filled up by it. Filled up so it can return to its person, so She can return to me ready to remind me how beautiful this living is. That we cannot get it wrong and it’s never done. The chapters continue.

Next chapter? Transplant, next Friday, April 22nd.

Arbitrary footnotes:

**U of I Hospital IS basically Grey’s Anatomy. Everyone is young and beautiful, even when they are pumping bloody urine out of you with a 60 CC syringe. It somehow makes it…better?

***The same rule with water. Think about water? Freakin’ drink some, son.

We are basically nurses now.