Leslie’s Acute Promyelocytic Leukemia Story

Leslie was diagnosed with acute promyelocytic leukemia (APL) after feeling symptoms like fatigue and joint pain.

In her story, Leslie shares her chemotherapy experience, recovery, parenting with cancer, and how she approached the issue of fertility preservation.

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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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Diagnosis

I paid a chiropractor for a spinal therapy. I was having adjustments all the time. That wasn’t really working. For about two months then, I just didn’t really go to the doctor because I wasn’t getting any answers and spending so much money. 

I started having an extreme headache with no relief for months. I went to the urgent care. They told me I had a sinus infection. I started taking antibiotics, and then I went back on steroids. I still wasn’t getting better, so they gave me Tramadol. I would throw that up. 

I started getting deep purple bruises, more joints started hurting, and my collarbone started hurting pretty severely. One night, I couldn’t sleep, so I went to the local ER.

That doctor saw the antibiotic I was taking and said, “It doesn’t look like you’ve taken all this.” That wasn’t the problem, though. 

How did you finally get a diagnosis?

We have a friend who’s a physicians assistant (PA) at that same ER. 9 days after the first ER visit, I told my husband, “I can’t get out of bed. I can’t take care of our son. I don’t know what’s wrong.” He wanted me to go back to the ER, but I didn’t want to go because they all made me feel like I was crazy. I started to think I was crazy. 

Describe the bone marrow biopsy

I think it depends on a person’s pain threshold. I didn’t get put under. Some people opt to do it that way because it can definitely cause a lot of anxiety if you’re not mentally prepared for it. 

I do pretty well with pain and anxiety control, so I was okay. It’s not a pleasant experience by any means, but it’s not the end of the world. 

They can numb your skin and your muscles, but they can’t numb your bones, so it’s a lot of pressure. You don’t really know what to expect when you’re going into it. 

They take the marrow from your hip, so you’re lying on your stomach. It can get a little graphic, but they numb what they can.

Treatment

What was your chemo regimen?

I was quarantined initially. I was inpatient. I didn’t go outside. I was in a neutropenic room because I had no immune system. I got chemo every single day for 2 months. I got a lot of blood transfusions as well. My chemo was ATRA and arsenic. 

When I was outpatient, I went Monday through Friday with weekends off for a month straight. I had a few months off of infusions after that, but I was still taking a chemo pill at home. It’s pretty intense. 

The arsenic can cause heart problems, so I had EKGs twice a week. The ATRA was worse surprisingly. It caused severe headaches.

My skin hurt everywhere, too. Clothing and going to the bathroom even hurt. My skin would come off with adhesive, so they had to be very careful. I was like a snake constantly shedding dead skin. It just hurts and burns like a sunburn all over. 

I didn’t have a lot of trouble with nausea or anything, but your skin is your largest organ. For it to hurt all over constantly was pretty rough.

Get your answers. Anybody that has had cancer has an experience where they’ve had to be their own advocate. 

I would recommend that you find a support group during treatment. I know not everybody loves Facebook, but if you search your type of cancer, you can probably find people who are going through what you’re going through. 

It took me a while to find one, but I did. Those people became my lifeline when I was experiencing a side effect or something, and I could see what their doctor had recommended and show that to mine. Look for something like that.

I hate when people say, “You’re lucky it’s only stage 1,” or, “You got the good kind, at least.” Every cancer experience has terrible symptoms and side effects, but APL isn’t as bad or scary as you think.

It’s amazing what medicine and your body are capable of. You just have to find your center. You are stronger than you know. 

He still talks about it sometimes. We just try to make it to where he can understand. They have some camps and things kids can go to, but my son is still so young that we don’t want to do that.

He knows things, but it’s heavy. Because of his age, it doesn’t sink in all the way. 

»MORE: Parents describe how they handled cancer with their kids

How did the experience affect your relationship with your husband?

It brought us closer, but it was also a huge stressor. My husband did things for me that I never thought he’d have to do — maybe when we were older — but he took such great care of me. 

He worked early in the morning in the opposite direction of the hospital, and he’d get off work and come straight to the hospital. He basically didn’t sleep. 

He felt awful because he didn’t know that I was that sick. He did things for me that I didn’t imagine that a human could do for somebody. The nurses and all the support staff’s jobs can be very tedious. He took it upon himself to change my sheets so they didn’t have to. 

I was told it was probably still possible, but it might be dangerous, and I needed to wait at least 2 years after the chemo protocol ended. 

I haven’t been able to successfully conceive since, so we’re not sure.

We looked into fostering. We were called about possibly fostering a baby girl, but it didn’t work out for geographical reasons. We’ve had a lot of highs and lows with it. 

→ Read more about fertility after cancer treatment

How did cancer change your perspective on life?

It’s very bittersweet. I’m still trying to figure some things out. I remember I kept telling my husband right after everything that I hoped that I didn’t lose how grateful I was just to do things like taking a shower. 

You lose that some. Frustrations in life come. I haven’t gone back to my former self, but it’s complicated. It’s such a complex emotional rollercoaster.

When you’re done with treatment, you look normal, and people want you to be happy and healthy. You are for the most part, but for a while, I just wanted to get back to my old self. That’s just not possible in my situation. Some people can, but I haven’t been able to revert.

You kind of have to mourn your old self. 

When your health and state of mind isn’t the same, it can be frustrating. The trauma is still there, but it gets overshadowed by gratitude a lot of times. 

Things hit me in waves. I probably should’ve started trauma therapy of some kind. I’m still trying to figure some of it out. I have things that still affect me in day-to-day life. 

I have this maturity and strength now that I wouldn’t have had I not experienced this. It sets you apart in some ways. I’ll hear people complain, and it’s hard for me to be sympathetic because things could be so much worse. 

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