Relapse.

This time, my bones. My uterus, or so they think.

This time everything is different. Everything. I’ll do my best to take you back with me and walk through the past 3 weeks; it feels foggy, stumbling, difficult to follow as describing a dream.

I remember the painful, exhilarating cold of Wisconsin riding fat-tire bikes when my lip fell asleep the last day followed by my jaw. We stopped at a coffee shop in Dubuque, IA on the drive home, and the one sip of mocha tasted metallic, wrong. Around midnight I woke up with a pain in my shoulder. I must have overdone it. By the morning the pain consumed my back, then my left arm, then my right arm. Two days later I was in the ER begging for help. Please, make the pain stop. Oral shingles, they said, leaving me with nerve and pain meds. Then more days were lost rolling on the floor, my mom and Evan hovering above me. Pain meds every five hours. Every three hours. Every two hours. Head to toe I broke out in small discolorations like my blood was bubbling to the surface. There was no relief. We need more help.

One week prior we’d met our new oncologist Dr. Mou, a lymphoma specialist at the University of Iowa Hospitals. Evan emailed him. We did a blood test and when I read the first numbers on MyChart for LDH I knew. Normal range 34-240. I was at 15,500. The admittance to the hospital and the week spent there, a blur of being wheeled around. My jaw was numb, an MRI to see if the disease made it to my brain (it did not). A PET scan, “pristine” 4-months ago now aglow, just whereat I haven’t seen nor do I plan to. Bones, uterus. An ultrasound of my cervix was inconclusive, better to wait and watch. As my skin bubbled so did my nose with non-stop nosebleeds, a sign of low platelets. Daily infusions of blood and platelets as Evan fed me soft foods to battle nausea. Chemo started right away as a steady stream of specialists pulled up chairs beside us. “Us” was Evan or my mom, a constant vigil during the 9 AM - 5 PM visiting hours. The psychiatrist, the OB-GYN and her student (the UI hospitals, a teaching hospital which brings me immense joy), the nutritionist, the team of lymphoma docs and PA’s, the recreationists offering me all the puzzles, a joyful comedy duo of med students who installed my PIC line since my port is now a Christmas ornament (no regrets). A week passed in these visits, in applesauce feedings and eventually slow walks where I clung to Evan, never a hand-holding couple until now. We stopped to read every art installation.

I was released last Sunday. Two days earlier than expected to a world of white noise. I’d forgotten how to sleep, confused by what sleep was. Was I actually dead and didn’t know it? Nausea consumed most waking moments. I was still fed applesauce for two days after being “home.” Home being my mom’s couch in Iowa where we just moved six weeks ago with a firey urgency that feels like a miracle of self-driven knowing. I had to get to Iowa, we had to be wrapped by family, swaddled with unconditional “tell me what to do’s”.

To-dos now are every other day trips to Iowa City for blood tests and infusions, quiet waiting in rooms with personalities, beeps, baldness, and lots of saltines. Yesterday, we met with Dr. Mou and we talked about a cure. I’m responding to the chemo, an unusual and exhilarating shattering of the white noise as She (this body) is on fire with a will to live, even when I have no energy to imagine it for myself. Two rounds of chemo, followed by a PET scan. Next week we’ll meet with the transplant team as we move towards CAR T Cell Therapy, a technology that didn’t exist two years ago but is now giving people like me a 50%+ shot at a cure. That is the trick of this biz. I just have to live long enough for the technology to advance and extend my life.

This morning, I woke up rested having had my first dream, one where I was plump and happy in the woods (not a skinny, bald, flat-assed shell of this waking life). I was able to sit by the window in quiet as the sun came up. Water tasted nourishing, not like metal. I fed myself, I read books, and wrote morning pages. I’m writing this as a record for me, as an update for you. A deep, profound stillness has settled over me. I go for hours quietly listening to the house settle. Everything is different this time like it had to happen again, that I needed to lose it all to reach Her, a true dark night of the soul.

The love that Evan and I are wrapped in continues to be a stunning display of how beautiful this world is, how beautiful people are. We were meant to fly to Oregon, to pack our things, to move them back to Iowa, to close on a house all during these past few weeks. Once word got out to our closest friends in Oregon, they mobilized, organized, and planned a “party” where they packed our things for us, sold when we didn’t need, and a stranger is driving our stuff across the country this weekend. I’m wordless, breathless by what love has been shown to us and I’ll be damned if I don’t spend every waking moment of whatever precious days I’m given in finding ways to love in return. Thank you, my beautiful friends and strangers.

It’s my hope to continue to bring you along on this new path with me, with us, on this journal, and on Instagram. As I’m asked often for small ways to connect/comfort/love upon us, the best place to send cards, gifts, and love is to my mom’s where we are currently staying until we find our home in Iowa:

Hayley Schmidtke 4552 Maureen Dr, Cedar Rapids, IA 52403

We got this.