I think it’s funny how much can change in a year.
Last summer, the stem cell transplant team at Lucile Packard Children’s Hospital at Stanford gave me three sheets of paper.
Three sheets of paper held together by one staple.
Three sheets of paper that weren’t even fully filled. I’m almost certain that all the information I was given could have filled up one piece of paper back to back.
These three sheets of paper summarized 4-5 years of my life when I lived in and out of the hospital.
These three sheets of paper has information like my date of diagnosis, my date of transplant, my age of diagnosis, my dates of relapses (all three of them, cause you know, it’s not like they are embedded into my brain), and all the dosages and types of chemotherapy and radiation and all the nauseating details that brings me back to May 2000.
I can’t remember what I did during the month of May last year, but I know what happened in May of 2000. My lymph nodes were swollen and I was in and out of the hospital that month. I learned what an IV was. I cried when they said I had to stay overnight and be admitted. I remember praying a few days before Mother’s Day and asking God to let me be okay, so that my mom didn’t have to spend Mother’s Day with me in the hospital. I was discharged before Mother’s Day. But then I went back a few weeks later to learn about this thing called Anaplastic Large Cell Lymphoma.
I remember all of these things. They didn’t include this in my three pages.
The paper doesn’t tell you how much I loved school and how pissed I was that my mom signed me out of class during the middle of the day. It doesn’t tell you that while the doctors were talking to my parents first, I was in the other room drinking apple juice and eating graham crackers while watching Snow White and the Seven Dwarves.
The paper doesn’t tell you how I drowned out the useless jargon when doctors talking to me when explaining procedures or side effects and I was pretending to care and not care at the same time. And it doesn’t tell you how I cried after I asked the doctors if I was going to lose my hair and it definitely does not tell you how heartbroken and angry I was when I woke up one morning and looked at my pillow with chunks of hair stuck to the pillow case. And while the paper tells you the exact dates of my relapses, it definitely does not tell you how many times my hair finally grew back, only to be lost again three different times.
The paper doesn’t tell you that a boy pulled my hat off my head during recess when I was losing my hair. It doesn’t tell you how I didn’t want anyone to visit me because I felt ugly—I was either really skinny or really chubby depending on what treatment I was on, and my hair was nonexistent, so I went through a phase of refusing visitors.
The paper doesn’t tell you that the second or third time I relapsed, we went to Justin’s house right after the doctor visit. It doesn’t tell you that I was walking towards the family room and I caught my parents crying in the arms of Justin’s parents. I don’t think they know I saw them.
I can continue on about such things, but the point is these things aren’t written on paper. They’re not written down within these three sheets of paper and they’re not written down in the number of journals I keep or on my online blog with hundreds of posts.
I can’t remember a lot of things, but I remember these things. People commonly ask me “what was the hardest thing about having cancer?” but I don’t think anyone has formally asked me what were the good things that happened while having cancer. It’s an awkward question; it’s weird to hear “good” and “cancer” in one sentence unless you’re talking about recovery.
It’s quite an uncomfortable question to ask, but yes there are good things, I promise you.
The paper doesn’t tell you how I locked myself in my parent’s bathroom after finding out (the first time) I was sick. It also doesn’t tell you that before coming to my house, Justin went to McDonald’s to get me chicken nuggets. He knocked on the bathroom door to deliver me 6 piece chicken nuggets with BBQ sauce because he knew that was my favorite and that was his way of making me feel better.
The paper doesn’t tell you how badly I wanted to watch the Rugrats movie, but I wasn’t allowed to be in closed areas because my immune system was very weak. It doesn’t tell you how much I cried because I couldn’t go, but having the wonderful parents that I have… my mom finally gave in and let my dad take me.
When my brother found out that some kid took my hat off, he asked me who he was because he wanted to beat him up.
The paper doesn’t tell you how my cousins would visit me and we would sit in the wheelchairs and race in the hallway and pretend we were in that Disney Channel Original Movie, Miracle in Lane 2… and it doesn’t tell you how often my cousins would take me to Petroglyph and we’d paint random bowls and plates—we OWNED that shit before Color Me Mine was crackin.
The paper doesn’t tell you that before my stem cell transplant my parents and a pastor stood around me to pray for me… and my nurse stopped what she was doing and joined us.
It doesn’t tell you that my hospital room windows were filled with cards from people from school telling me to get well or that when I came home after 3 months in the hospital, my house and room was decorated with “welcome back” posters.
The paper doesn’t tell you how many people rock a Team Mish shirt, many of whom I do not know. It doesn’t tell you that I’ve been asked if I’m “that girl on the t-shirt” or how one time I was walking to my chemistry class and someone stopped me and yelled “HEY! YOU’RE MISH!”
The paper doesn’t tell you that a bunch of my friends rolled out to Relay for Life to walk with me. And someone wrote me “look how many people love you.”
The paper doesn’t tell you how my cousins used to often buy my favorite cake from Peter’s Bakery, especially when I would come home from the hospital. Even though my taste buds were wiped out for a time, I would still eat my fuckin cake.
It doesn’t tell you that my blood (platelet) counts would be low and I’d get nosebleeds during class (I told you I loved school) and people thought I snorted coke.
I played along at times and said I did drugs (because let’s be real, chemotherapy is NO JOKE).
It also doesn’t tell you that I hate being put under any sedatives or taking any painkillers because I get weird. Weird like—high as a kite, off into another world—kind of weird. I woke up from a procedure once and I immediately asked my mom for krispy kreme donuts. Ask her about it. I pretend it never happened.
So why am I posting this and letting you all know? Because, I promise you, the little details matter.
Maybe it’s not so obvious at the time, but I promise you they will matter in the future.
It has been 13 years and it still matters to me.
My name is Michelle Lapitan, but most know me as Mish. My pronouns are she/her but I do not mind they/them. I am a graduate student at UC Berkeley’s Master in Social Welfare program, but am taking a break since I am undergoing treatment for a rare form of Non-Hodgkins Lymphoma. This past year, I have been focused on my healing by way of writing and photography. I just finished putting a book together, which documents my past year of treatment (and can be purchased here)! Currently, I am in the middle of an interactive portrait series where I take portraits and have participants hand write answers to “What does healing look like for you?”. I can be contacted on my instagram, @mishlapi. Let’s collab :)!