McKenzie’s Acute Promyelocytic Leukemia Story

McKenzie was diagnosed at just 21 years old with acute promyelocytic leukemia (APL). She got into remission after undergoing chemotherapy.

In her story, McKenzie highlights how she managed a long treatment period mentally and physically, finding a cancer community, and the support that helped her through the worst times.

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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First Tests

What were the first symptoms?

I started working at a daycare, and I kept getting sinus infections. I was like, “It’s probably just because I’m around kids that are getting sick all the time.” I didn’t think anything of it. I kept getting them over and over again. I was like, “Something is weird. Something isn’t right. I had sinus infections 3 times.”

When it got to be February, I got my period, and it was the period from hell! It was awful. I didn’t feel right. My mom was like, “No, it’s fine. Next month, if it’s really bad, then we’ll go see the doctor.” But it just didn’t sit well with me.

Checking into the emergency department

I was 21 and still had a pediatrician, so they had a hard time because they were like, “Should we put you on the adult floor? Should we leave you with pediatrics?” They had a hard time putting me in a spot.

They kept having people come in. They took my blood. Then I got a CT scan to make sure there were no tumors or anything. That came back clear. Then the hematologist came in and was like, “Okay, we’re going to tell you everything it could possibly be.”

I just remember he said blood cancer, and I started crying. He left. It was just my mom, and I was like, ‘Blood cancer?!’

She was like, ‘No, it’s definitely not that. They have to tell you all the possibilities.’ I was like, ‘Okay, yeah, you’re right.’

We go to the ER, and even in the emergency room, both of us are lying in the hospital bed watching SVU. We’re like, “This is fine! Everything’s fine!” Later that night, I got my first bone marrow biopsy.

CT scan & contrast dye

I laid there, and I was so, so nervous because I never did anything like that before. I remember the nurse there gave me an IV of something, and she’s like, “It’s going to make you feel like you’re peeing your pants.”

I was laying there like, “You didn’t have to tell me that.” But then it does actually feel like warmth in your whole body. It does feel like you’re peeing your pants, but you’re not. Then I was done. It was really quick. It was nerve-wracking being in that little thing.

How long did it take to get the results?

It wasn’t long. It couldn’t have been more than an hour.

Bone marrow biopsy

They did a prep, so it probably took 20 minutes at the most. It doesn’t take that long. Thankfully, my mom was with me. I was laying on my side. They numbed my whole hip because they did it on my lower back, on the back dimple basically. That really hurts.

They cut me open a little bit, drill in, and take out the bone marrow. It hurt so bad. The pressure of it is the worst thing I’ve ever felt in my whole life, but I was really grateful my mom was in the room with me. The doctor who did it was really nice.

Tips on dealing with the bone marrow biopsy

I just focused on my breathing.

Especially the first one, my mom was trying to talk to me to get my mind off of it, but for me that wasn’t really helpful. I just needed to be in the zone and breathe it out rather than talking. Everything is different for everyone. Now my mom knows she just doesn’t say anything to me. She just lets me breathe.

I think for a split second, I was like, “I could die.” But then after that, I was like, “I’ll get through it. Rather me than someone else. I know I could get through it.”

»MORE: Patients share how they processed a cancer diagnosis

Were you allowed to move around?

I couldn’t leave. They put me in the ICU. I was not allowed to leave my room since my blood counts were so low. They didn’t want me to get sick. My mom, my dad, and my boyfriend brought me things so I was comfortable.

Blood and platelet transfusions

My first night at my first hospital, I got a bag of blood and a bag of plasma, which was very scary, too, because I was like, “What’s happening?”

They hooked me up. It took a while. It was a little scary because I didn’t think anything was wrong. They’re giving me things like blood — clearly something is wrong. It made everything feel real.

Inpatient Experience

Transferring hospitals (next day)

I went in an ambulance, which was my first time in an ambulance. It was scary. My dad went into the ambulance with me, which was nice. I was so anxious and scared the whole time. Once I got in the ambulance, everything felt real. My dad was talking to me to keep my mind off of it.

Items to pack for hospital

I had a weighted blanket. That made me feel so relaxed for the days I was so anxious. When I was staying at the hospital, in my room, I really liked having my own pillows.

A blanket that’s yours from home so when you’re sleeping, it doesn’t feel like you’re somewhere you’re not supposed to be. You are, but it makes it feel a little more homey.

Checking into new hospital

When I got to the new hospital, they were asking me questions and took vitals there. My room at the new hospital was a lot nicer than my room at the old hospital, which was nice. It was a little bit of an upgrade!

My doctor came in. He wanted to do another bone marrow biopsy, so that was “nice.” I got my biopsy, and then later that night they had to give me a bag of blood.

2nd Bone Marrow Biopsy

It was worse than the first time. My nurse practitioner did it. She had a hard time. She had to keep going back in multiple times because my doctor was like, “Nope, you’re not getting enough.” That was not fun. It wasn’t as quick as the first one.

When did you get the results?

The next they got the results, and it came back that it was acute promyelocytic leukemia.

Surprises about hospital stay

The nurses constantly checking vitals was something I didn’t expect. That was really the only thing. The first couple of times, they came in a lot. When I was there longer, it didn’t feel as much, probably because I got used to it. They’d come in, take my temperature, and take my blood pressure. That was pretty much it.

What helped you through long hospital stay?

I ended up being at the hospital for 3 weeks. I wasn’t able to eat outside food because I was neutropenic, so I was always jealous when I knew my family and friends were eating cheeseburgers or going out to eat. I just really wanted to eat real food.

Protecting personal space

That was really hard for me. I am such a people-pleaser, so whenever someone would be like, “Can I come visit you?” I would just feel bad and be like, “Yeah, sure!”

Then I’d be like, ‘Wait, I haven’t seen that person in so long, and I don’t talk to them. Why did I say yes?’ But I was like, ‘It’s more for them to feel good,’ so I would just let anyone come see me. Now, I feel like, ‘Why did I do that?’

I think I had a hard time. I do this now. I always worry about everyone else. I feel like you can be selfish. It’s your time. You’re going through something; you can be selfish. I wish I was like that.

A blog can help avoid repeating your story

I did make a blog I updated once in a while because I feel like I was telling my story over and over again. It was on repeat. I kept saying the same thing over and over again. I wrote it all out so that if someone saw me, they wouldn’t feel the need to ask it because I was sharing my story on the blog.

Tips on living with a PICC line

Showering was the worst. I had to put gauze and then the clear aqua pads. I also got little covers for it on Amazon.

You can get different colored covers, so I had a bunch of colors. When I got the PICC line, I’d have different covers.

»MORE: Read patient PICC line experiences

Describe the ATRA oral chemo regimen

It was 4 pills twice a day.

What were the ATRA chemo side effects?

With the pill I was taking, I’d get really, really bad headaches, and that would start right when I started taking them. The headaches were really bad.

Arsenic trioxide infusion

It was 2 hours. When I was in the hospital, it was every single day. Once I was out of the hospital and doing outpatient, it was 5 days a week.

Hair thinning

That was one of the first things my doctor said to me: “Your hair is not going to fall out.” It was weird that it was thinning. I remember waking up, and there was hair on my pillows. I was like, “Did he lie to me? Is my hair actually going to fall out?”

Outpatient Experience

Leaving the hospital

They let me out of the hospital earlier than they thought. My doctor was saying my counts were going up, so I was able to leave.

I think it was a week or so early. But I still had to go to outpatient every single day until they did another biopsy.

They got the biopsy and my counts. Everything looked good, so I was able to take a 2-week break and start the 4 weeks on, 4 weeks off situation.

»MORE: Mental and emotional support when leaving the hospital 

Going to clinic

It’s an hour drive there from my house, so I was able to stay home at my house. It was 2 hour [infusions]. The first day was always longer because I had to see my doctor.

Some days it would be all day. Other days I’d be in and out 2 hours. It would just depend if it took them a while to get my drug processed.

Last bone marrow biopsy

I finished my last infusion, and then the next day, I went in for the biopsy. Halfway done, the cancer was out of my blood cells, but it wasn’t out of my DNA. I was progressing so well that my doctor said, “You’re going to be fine.” I went in a couple weeks later, [and] he was like, “All good! You are good.”

The last one showed no cancer!

My doctor always told me I was fine. Sometimes I’d respond that I didn’t feel fine. I really liked my doctor. He was great. He always made me feel at ease. He would always make me feel like there was nothing to worry about.

Dealing with regular bone marrow biopsies

I used to get really anxious before them just because I knew what was happening, and then I started taking a lorazepam before because I just felt so anxious.

Before I got my 2 weeks off, I got a biopsy. Halfway through I got one, and at the end I got one. It looked better and better every time.

After Cancer Treatment

Follow-up

I go every 4 weeks to see my doctor, and every 4 months I get another biopsy. This went on for the first year. Then, I think after that I see him every 4 months. Then I get a biopsy every 6 months. It gets less and less biopsies.

What helped you through the toughest times?

My friends and my family really helped me get through everything. They were always open to listening to me talk whenever I wanted to. They were always there for me.

When I was going through treatment, I went through a lot of books. Mindless books so I wouldn’t have to think about anything. That really helped me, too.

Talking to your friends — they can listen, but they don’t get it in the same way as someone who went through it.

»MORE: Join other patients and caregivers on The Patient Story Instagram

Being a young cancer patient

Being young with cancer is weird, because when you’re 21, that’s the last thing you expect to have to go through. I was in school, too.

No one expects in your 20s that you would go through something like this. When I thought of someone getting cancer, it’s when they’re older, not when they’re young. Being young with cancer is something, too.

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