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Diving In

“Young patients always want to be sedated,” the nurse told Taylor. 

I could hear their muffled voices through the thin hospital walls. They were talking about me. In retrospect, I think the nurse was just trying to express a pattern, something she had seen in her years of inpatient oncology work. What I heard, though, was judgement. “Young patients always want to be sedated.” She seemed annoyed, inconvenienced by my inability to just stick it out. The older patients are tougher than this. They don’t throw fits, they deal with their pain and suffering with the wisdom of age or something. Regardless of whether that was her point, I was pissed. 

 At 25, I was easily the youngest person on the ward. Six weeks earlier, I had gone to my university’s health clinic in Bozeman, Montana to have someone look at my bleeding gums and swollen lymph nodes. I was promptly sent to the emergency room, where a stern, stoic oncologist told me that I was having a “cancer emergency”. Five hours later, I was flown to the University of Utah’s Huntsman Cancer Institute where a bone marrow aspiration showed that abnormal blasts had crowded out my immune cells. 95% of my bone marrow was compromised by cancer: Acute Lymphoblastic Leukemia. I don’t think I fully grasped this at the time, but I now realize that without treatment, I would have had days to live. Ripped from our lives in the middle of the night on a Wednesday, my boyfriend Taylor and I were delivered a diagnosis on Thursday, and a four-week round of inpatient Chemotherapy started bright and early Friday morning. 

Helping the flight crew strap me in. I remember saying repeatedly: “I don’t even feel sick”. I was, in fact, acutely sick.

Leukemia is a disease that typically affects young children, the graph spikes at around four years old, with another peak later in life. Twenty-five years is basically the bottom of a shallow curve when it comes to contracting this already quite rare disease. We’re really good at treating Leukemia in children, with about a 90% cure rate for kids under 15. “Adults” don’t do so hot, about 40% live for five years after diagnosis. Doctors and nurses encouraged us not to give these statistics much weight, mostly because treatment has changed a lot in the last five years, and the five year survivability data is at least five years old. Say that five times fast.

I was also told that I was special (finally!). Though I am a “young adult”, my numbers are all tangled up with everyone else’s- ancient people, people on dialysis, people with diabetes and heart disease, people with no functioning organs, people with no legs who live in a cave and eat spiders, and so on.

A few weeks before a kind, birdlike doctor perched on my hospital bed and told me all of these math problems, I was routinely showing up late to my 8:00 am statistics class. I was waking up later and later each day, drenched in sweat, with dark circles under my eyes and strange bruises all over my legs, thinking that I was just burnt out or sleep deprived or depressed or some combination. The professor would show a slideshow that might as well have been hieroglyphs, my eyes glazing over as I traced my fingers over the swollen lymph nodes in my neck, chugging coffee and popping ibuprofen. I later understood that my hemoglobin was so low, not enough oxygen was getting to my brain. No wonder I felt like I was getting progressively dumber. 

Treatment progressed in a blur, I spent 20 days in a beautiful corner room with a view of Salt Lake City. Because of my age and health, I received the more intense “pediatric regimen”- a weekly dose of peg-asparaginase, daunorubicin, and vincristine into a central line through my arm directly to my heart, and four lumbar punctures full of methotrexate and cytarabine to kill any lurking cells in my spinal fluid or brain. I was put on a high dose of prednisone, a corticosteroid that caused my face to swell into the shape of a full moon, my stomach to distend, my moods to swing dramatically, and the blood flow around my joints to weaken. My hair fell out after about 14 days, and my immune system dropped to basically zero. I wasn’t allowed outside my room without a mask, and was confined to the oncology floor. 

Me and my IV stand. My carabiner tattoo elicts so many different weird responses from healthcare providers. For the first month, anytime someone would point it out, I would break down crying. Climbing felt like the most far away thing in the world.

I watched NPR tiny desk concerts (Lizzo’s about ten times) and Portlandia and New Girl with Taylor, my mom flew out from California and we tried take-out from just about every restaurant within a ten mile radius. I laughed a lot in the way that you do when you’re sleep deprived and stuck with few other people. I told my nurses stories about how cool I used to be, vomited a few times, cried a little bit about how my life was being derailed, told my professors I would valiantly still graduate despite all of this, subsequently dropped out after trying to complete one homework assignment, and tried to read books and failed because I couldn’t comprehend a non-linear storyline (something about the toxic drugs floating around in my brain). Taylor slept on a padded bench by the window and I woke him up every time I had a bad dream about dying. We gave each other pep-talks in the bathroom. “Snap out of it, we can do this,” we would say to the other through gritted teeth. 

My fingers went numb, my legs grew weak, and sometime around day 10, a team of people came into our room carrying a familiar, somber, news-breaking vibe. They explained that I would need a bone marrow transplant. Genetic testing had been done on my marrow samples, a weird chromosome that caused the cancer signaled to the researchers and scientists and doctors that even if I were to complete the standard two-year long cycle of chemotherapy, the Leukemia would pretty much always come back. The only way to stop my marrow from growing out of control and choking my cells is to kill every last immune cell with intense chemotherapy and total body irradiation, then to replace my shitty self-sabotaging immune system with somebody else’s. Side effects? Oh, you know, just more cancer. Sometimes the two immune systems will battle each other, leading to chronic joint pain, inflammation, blindness, etc. My fertility was a lost cause, and my prognosis was officially filed under “poor”. 

By this point, I had a splitting headache anytime I was upright, fluid in my ear caused me to be nearly deaf after a few minutes of standing, my speech and reaction times were growing slower and slower, and I wasn’t sleeping more than three or four hours at a time. I was laying on a padded bench next to the window, not bothering to sit up or even pay attention while the team of practitioners unpacked all of this news and fielded my mom’s and Taylor’s questions. They both cried. I don’t remember asking questions or even saying anything. I didn’t give a fuck. 

Sometimes it feels like people say the same thing over and over. Its safe to say I’m over being reminded that I could die at any moment.

A few weeks later, after we decided to sublet our apartment in Bozeman, give our new kitten back to the animal shelter, leave Salt Lake, and move in with my parents in California, I was admitted to UC Davis for a session of a drug called blinatumomab. The Blin is designed to specifically target residual leukemia cells, is less harsh than chemotherapy, would get me ready for transplant, and all I would have to do was be connected to an IV pump full of it 24/7 for four weeks. Don’t worry! It’s in a fanny pack, and fanny packs are cool again! (I was told this by nurses and doctors over and over, to the point where I thought maybe people had been trained to say this. Is this Big Fanny Pack’s puppetry?) Oh, and an easy 9 day hospital stay while they ramped up the dose to monitor for neurologic symptoms was necessary. 

This is when the nurse said the thing about young people begging to be put to sleep. I believe my exact words were: “give me Xanax or get me the fuck out of here”. Yikes. I was coming down from what amounted to basically a steroid-fueled temper tantrum, after a nurse gave me a monstrous IV dose of Decadron (a corticosteroid that personally made me red and blotchy and feel like the Hulk) and told me that I would be moved from my tiny hospital room to a shared room for the remainder of the stay. It was the week of Thanksgiving, a holiday where I was fed cold turkey and a piece of pumpkin pie that tasted exactly like a pumpkin pie scented candle. My new roommate was an eldery woman with lung cancer. I never saw her face, but it was clear that she wasn’t exactly thriving. The door needed to remain open so that the nurses could hear her. She peed on the floor, coughed productively all night, and during her assessments told the nurse that she believed it was 1990. True crime shows blared from her television non-stop. Taylor tried to sleep and work on his laptop from a camping pad on the floor. I listened to music in headphones and stared meanly at passerby in the hallway while I cried. I felt profoundly too young to be there. If I were younger, I would have been in a children’s hospital, playing with legos and going to music therapy. Instead, when I asked to talk to a psychologist or counsellor, a social worker told me: “I think that’s a thing from the movies”. 

The next day, my insurance denied the blinatumomab pre-approval for outpatient. I was not allowed to leave until it was approved. A social worker explained that usually people receiving this drug were on Medicare (read: old people), and private insurance didn’t understand the logistics of the inpatient/outpatient infusion situation. I was enraged. I felt bored, trapped, and tortured. My mind was becoming more clear, I was feeling the effects of the chemotherapy fade, and reality set in. I have a deadly cancer and I’m being toyed with by the American healthcare system. The only way to escape my room was to pace the U-shaped hallway. I did hundreds of laps, looking into other patients’ rooms, searching, I guess, for someone like me. The hallway dead-ends in a set of heavy metal doors, creating a hermetic seal for the delicate immune systems housed in the bone marrow transplant unit on the other side. I would get to the end of the hallway, look into the quarantine section, searching for something, seeing nothing, then slowly turn around. I asked a nurse if she had ever worked on the BMT side. She explained that the patients on that side were “too sick” and it scared her and made her sad. 

Eventually, we were permitted to leave, I carried around a fanny pack full of expensive cancer drugs for two weeks, and only occasionally woke up drenched in sweat with IV tubing wrapped around my neck. It’s now January, I’m supposed to have my bone marrow transplant sometime soon, I just don’t know when.

In this period of waiting, I’ve been searching for something. I scoured the internet for success stories and read just about every blog post, facebook comment, and reddit thread that exists about bone marrow transplants and the people who receive them. Some people die. Many have tales of permanent chronic illness and woe. Some people are doing just fine. Some people go back to running marathons and triathlons and go to cancer camp where you learn to surf and eventually grow out their pixie cuts and graduate from college and join the ranks of normal people. I think I was searching for someone I can relate to, someone that has gone through exactly everything I have and survived. Some guidelines to follow, a plan maybe. I didn’t find anyone. Unfortunately and fortunately, this is my story to tell. 

I just finished my first book in months, a novel called My Year of Rest and Relaxation by Ottessa Moshfegh. The story is about a woman who wants to sleep for a year. She thinks that if she manages to sedate herself long enough, she will emerge on the other side, healed. In the end of the book, the narrator describes watching a woman on TV leap out of the north building of the burning twin towers. “I am overcome with awe,” she says, “her blouse untucked, hair flailing, like a dive into a summer lake. There she is, a human being, diving into the unknown. And she is wide awake.” 

a self-portrait

13 thoughts on “Diving In

  1. Thank you for sharing <3

  2. Kristen, you’re absolutely, brilliantly, magnificently amazing. You always have been. Please don’t forget that. Your ability to articulate your ongoing experiences with your treatment, your decisions, your struggles, and your successes is such a gift to us all who are following along.

    You’re the daily dose and reminder that this life is so fragile, finite, and truly worth celebrating. Thank you for being so transparent and raw, full of moxie and grace, and allowing us to cheer you on from afar. I believe in you with all my heart. You are incredible.

    Don’t stop, Kristen, this is your process, this is your journey, and through it all, this too will be your healing. I believe it with all my heart and I look forward to your posts in the coming days.

  3. Kristen you are in my thoughts and prayers. Your honesty and spirit shine through. I am a friend of Taylor’s mom. I believe you will be around for a long time. I’m hopeful your donor match is found.

  4. Dear Kristen, I read your blog and am amazed at your guts. Also, watching your vlog , I marvel at your composure – I know id be a blubbering mess if I tried to do what you’re doing – and you even have a sense of humor! Sending cyber strength and love. Jan

  5. Man you’re a talented writer! You beautifully articulated an experience that’s impossible for most of us to even imagine. When other 20-something patients need to feel less alone, they’ll be lucky to find your words.

  6. I am so sorry, especially for the extra cruelties of the health care “system”.
    Your art and writing is wonderful, & if anyone is in your situation and finds your blog, they will find encouragement in it, because the beauty of your spirit shines so vibrantly despite it all

  7. Your are right Kristen this is your story to tell and there will be people you can help through describing your journey. Thanks fir sharing with us and keep us informed. Thanks

  8. Dear Kristen,
    Thank you for your vulnerability, honesty and humor in sharing about your current life. Thank you for allowing us all to rally with you. You are amazing and always have been. The truth of who you are, your depth, your character is magnified here for everyone’s benefit of learning and loving. Thank you.
    Chris and family

  9. Dear Kristen, I am Daniel’s mom and we met, walked and had dinner in Bozeman shortly before this version of life emerged for you. I am crying as I read this… For all the obvious surface reasons but most deeply from being so moved by the strength and honesty of your spirit and being. I am sorry that you are going through this. And I thank you for the grit and gift you give to all of us, and especially others in like situations, who will find your sharing and feel their breathing relax just a little and their being dare to consider a different horizon line. You are in my thoughts and imaging for your highest. With Love, Leslie

  10. Dear Kristen,
    I am Daniel’s mom and we met, walked and had dinner in Bozeman shortly before this emerged in your life. I am reading this crying…for all the obvious reasons…but also becasue I am so deeply moved by your grit and honesty and by the strength of your spirit. Thank you for sharing so openly. Your words help all of us… and there will be those who really need to find them and will feel themselves able to finally exhale when they do. And your sharing will help them dare to set their own horizon line a little differenly. I am holding you in thought and imaging for your highest. With Love and prayers for deep healing…Leslie

  11. You are a talented, beautiful person and cancer is a bully. I’m sorry you have to go through this. Your artwork is amazing. I still remember when you drew a quick portrait of Abby. It took my breath away.

  12. You are a lovely person Kristen. Thank you for so sincerely sharing your thoughts with me on my own journey with the cancer of my son. You made a mother’s heart feel hopeful. Your strength of spirit is remarkable. But words can not soothe you only trust and hope and the life you live each beautiful day.

    Love you Kristen

    1. So sweet of you to help so many people, Kristen. Your words are powerful

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