Lauren’s Acute Lymphoblastic Leukemia Story

Lauren was diagnosed with acute lymphoblastic leukemia (ALL) at 26 years old. In her story, she talks about undergoing chemotherapy, radiation, and a bone marrow transplant.

Lauren also highlights recovery from treatment and how the leukemia diagnosis impacted her relationships.

---

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

---

I knew something was wrong because the doctor was calling me personally at 6 o’clock on a Friday.  That’s never good. 

Describe the call from the doctor

That call came down to say, “Hey, I need you to get to the emergency room immediately.” My response was, “Okay, you say the nearest emergency room quickly. Do you want me to go to your facility at Emory, or do you want me to go to the nearest hospital?”

He said, “I’d prefer Emory. I’m going to call the ER and let them know you’re on your way. Your white blood count is extremely high. Matter of fact, it’s the highest I’ve ever seen.”

I was like, “Okay.” At that point just freaking out, thinking in my head, “Maybe it’s just sepsis.” About 3 weeks before that, I felt like I had strep throat, and my doctor I worked for prescribed me medication for it. I took it, and it was gone for a while. It wasn’t hurting again or anything like that, so I was like, “Okay, that was strep throat.”

In my head I thought I should have had more medication. I took all the medication he gave me, but maybe I didn’t take enough. I’m severely infected if my white count is that high. 

How did you process the diagnosis?

I really think at that moment I was still in shock because I was actually sitting there in the triage room, playing on a tablet. I remember playing games on the tablet when he came in, so when he said it and then when he said, “You didn’t know?”

Me: “No, I didn’t know.”

Doctor: “Is there anyone here with you?” 

Me: “Yeah, but I feel like they probably should have been sitting next to me when you told me, because now I just want to fall out.”

Doctor: “Who’s here?”

Me: “My husband is here.”

Doctor: “Okay, go ahead and grab him.”

The doctor walked out of the room, and my husband walked into the room. He’s like, “What’s going on?”

I said, “He just told me I have cancer.”

He’s like, “What?!” 

I was like, “Yes, he told me he consulted Hematology-Oncology and a doctor would be here shortly.”

He was a lot more shocked than I was. He sunk down in the chair. I was looking like I didn’t know what just happened. I literally went from being pretty much healthy 3 hours ago to now someone telling me I have cancer. 

»MORE: Patients share how they processed a cancer diagnosis

Discussing abnormally high white blood cell count

Then the hematologist comes in, and he says the same thing: “For your current white blood cell count, you look amazing. I would expect you to look very weak or even possibly be in a coma.”

That was quite shocking.  I asked, “What kind of cancer is it?” He said it was leukemia. I asked, “How do you get that? Is it something I did?”

The hematologist said, “No, it has nothing to do with your lifestyle.”
He asked a lot of lifestyle questions like, “Do you smoke? Do you drink?”

I said, “No, I don’t smoke. I drink wine. If I do, I might go get Mexican and have some margaritas, but I’m not a lush. I’m not drinking all the time.” 

He said this is one of those [cancers] where we can’t pinpoint where it came from.

Staying at the hospital immediately

I remember him asking me if I had any questions. I said, “Yes, what are the next steps? Do I go home?” 

He said, “Oh no, your white count is way too high. We are not sending you home. You will be staying here and start on chemo pills.”

Just started rambling through stuff. I’m like, ‘Oh my gosh, this is real. This is real.’ 

Diagnosed with cancer so young

At the time, I had just turned 26. My birthday is on January 12. I got diagnosed on January 30. They didn’t know exactly what type of leukemia I had, but I got diagnosed when I had just turned 26.

Starting treatment right away

They did tell me I would have no option. Unless I went AMA (against medical advice), I had to stay. We had to start the treatment.

He told me, “Your levels were extremely high, so high that if you had not jumped on this, I would have given you maybe a week before your organs started to fail.”

That’s when it kicked in for me, and I was like, ‘Okay, yes, this is serious. Forget everything else. I have to get started because I have to live for my kids. I don’t want to go home and have something happen to me, so we just have to go ahead and get started.’

They took me to a room and told me I was going to be in one of the overflow rooms until they could get a room for me on the leukemia floor.

We went there. I got in. They got me in a gown. From the time I got into that room, I was in there for maybe an hour or hour and a half, and the nurse was coming in with chemo pills. 

I was like, “Oh, we start this tonight, like now.” 

She’s like, “Yes, ma’am, here are the orders,” and starts going through telling me everything I have to take and how they might make me feel.

I was like, “This is crazy!” I did take everything I needed to take. I think at that point is when it finally hit me, and I kind of broke down. I had a whole meltdown at that point. It’s like, “This is real. I just took chemo pills. I have cancer.” 

Getting some perspective on the diagnosis

At that time, I was actually working for an oncologist. It was awkward because we treat cancer all day, and now I have cancer. I remember sending him a text message. It was probably about 1 or 2 in the morning.

I texted my doctor I worked for and said, “This is crazy. I know you know I left work early to go to the doctor. I am currently in the hospital and have been diagnosed with leukemia.”

Relying on family for all support

My husband stayed for a little while, until the next morning about 5 a.m. Then he left to go home, get the kids, and actually had to go to work. He didn’t work at home at the time, so he worked away and did a lot of traveling.

He was already scheduled to leave that next morning when all of this happened. He got the kids settled. My mom ended up coming to the hospital. My mom actually worked at the hospital where I was diagnosed.

It was convenient, but she was there pretty much on and off all weekend because my husband couldn’t be there. My kids stayed between my aunt and my grandparents at the time while my mom was at the hospital. That was an adjustment because I was used to always being with my babies. 

How did you break the news to loved ones?

I didn’t. My mom did. I couldn’t do it. She pretty much told everybody in my family. My family’s pretty close knit, so you’re going to tell one person, and they’re going to tell everybody else. My immediate family knew from my mom, so pretty much from a direct source.

[For] everybody else, I started a Facebook page that was named “Fight Like a Girl.” It followed my entire journey, and that’s how everybody else found out I was diagnosed and how everybody followed my chemo treatment. My feelings, emotionally, physically — the whole journey was there for the world to see.

Do you have any tips on sharing the news of a diagnosis?

Do it in your own way. There’s no correct way to break the news.

There’s no balloons going off. A lot of people may not want to share the news. It may be something they want to deal with privately. You just have to do it in your own way.

For me, I was already into social media a lot. I was on Facebook a lot, on Instagram a lot. To me, it was okay for coworkers and everyone else who were calling and texting to let them know, “I’m not ignoring you, but right now I’m kind of going through something. Here’s what I’m going through so you all will know.” 

It was easier for my extended family to keep up with me that way, even my kids’ teachers and things like that. The schools were doing things for me, sending me things, and it was just easier for everybody to keep up with me just through social media. 

People may not want to do that. It may not be their thing; they don’t want the entire world to know their business. You just have to speak your truth in your own way.

Do it how you want to do it. If you don’t want people to know, that’s okay, too. The world doesn’t need to know you have cancer if you don’t want them to know.

»MORE: Breaking the news of a diagnosis to loved ones

How did the hematologist describe your treatment plan?

He told me what the next steps were going to be. He told me about the induction phase and how I was going to have to be in the hospital anywhere from 27 to 33 days. That kind of took me over the edge. I was like, “I can’t be in the hospital that long! I have kids; I have to go home.” 

He was like, “No, but you won’t be able to be with your kids if we don’t get this done. We want you to continue to be around for your kids for a long time.”

At that point, he started telling me about all the different chemotherapy drugs I was going to have to take. I was going to have to do 2 cycles of things, but first we needed to get through the induction and go through the first few days of the pills.

He explained to me my white blood count was so high that if they started intravenous therapy, they were afraid that the cells would disperse, literally go to my lungs, and cause me to die.

They wanted me to start on the pills first so that we could get the number of cells down before we started intravenous therapy. 

The oral chemo is not typically part of the treatment plan

That was before the induction. Everybody doesn’t need to do the pills. From what I was told, it was just because my count was so high that they could not start with intravenous. They didn’t want me to have those possible side effects from starting intravenous because my white blood count levels were so high. 

They wanted to start me on the pills to at least wean down those white cell counts until there was a safe level. I was on the pills for the first 5 days before we started doing anything intravenously.

Cycle A and Cycle B of chemo

After that, everything was pretty much intravenous at that point. I wanted to forget those drugs that I had to get for chemo.

They explained there would be Cycle A and Cycle B.

Cycle A, I would have to come in once after this induction phase. I’d have to come to the hospital every month for 4 to 5 days to get all of these drugs. 

For the induction phase, it started off with chemo every day being inpatient. They explained I was going to be super weak. I was going to be nauseous. Then after the first week of my intravenous therapy, they started explaining the drug they were starting the second week was what was going to take my hair out. 

Shaving your head

At that point, I just made the decision of shaving my head because I knew, personally, that I could not take seeing my hair fall out in clumps. That process would be harder for me.

I had my husband come to the hospital with his clippers and shave my head in my hospital room.

I literally told him, “Today they told me that starting on Monday, the therapy I’m going to start is going to take my hair out. I can’t do that. That’s going to break me down. Can you just come shave my head? Because I don’t want the patches. I don’t want to look like that. It’s going to make me look sick. I don’t want to look like that. I’m still doing live videos on Facebook and all types of stuff. I don’t want patches in my head. Please come cut my hair.”

He said okay. He came, showed up, had scissors and his clippers. He said, “Do you want to cut it down and then shave it?”

I said, “Yes, I do.” I literally stood there, cut my hair down, and then he shaved my head, standing in the mirror in the hospital. 

How did it feel shaving your head?

It felt fine. I think I took it better than anything that happened. I said, “Oh, I actually look cute!” My son looks just like me, and I didn’t realize that till I had my head shaved.

The response was quite interesting as well. After cutting it and posting the picture on Facebook, all I got was, “Oh my gosh, your son literally looks like you. He’s your twin.”

Getting a bone marrow biopsy to get your specific diagnosis

I had to get the bone marrow biopsy once the doctor I switched to had come back on Monday. When I had started the intravenous chemo, he told me everything that was going to go on and told me I was going to have to get a bone marrow biopsy.

They needed to lock down exactly which kind I had to make sure I was going to get the right therapy. He told me he was pretty sure I had acute lymphoblastic leukemia (ALL).

Describe the bone marrow biopsy

They did the bone marrow biopsy. The biopsy was interesting because I work for an ortho oncologist, and we did those all day long. It was kind of interesting because it was in the hospital. I was not under sedation; I was wide awake. I was literally telling them everything that they were going to do.

The nurse practitioner doing it thought it was interesting. She was like, “I’ve never had a patient who could tell me what I’m about to do and all the instruments I’m using.”

That was my way of calming down. I was talking myself through it, “Okay, they just put the lidocaine in. Now they’re going to make the incision.” The fact they were following it step by step, I was like, “This is good. Nothing is going to go wrong. T this is a routine procedure; it happens all the time. They’re going to get it right because they’re following all the right steps.”

Advice on getting through the bone marrow biopsy

When I’m talking to other patients, I just say you have to remain calm. Even though we want to look up things on the internet, don’t. That was the worst. Looking up things, you’re going to get a lot of negative things out there, and it’ll scare the crap out of you. 

I would prefer just to talk to the physicians and the nurses. The nurses see tons of the patients day in and day out. They see people get better. They see how people cope with things. They are a really good resource because they have the time to spend with you. 

The doctors do, but they’re in and out. They’ve got so much they have to do. The nurses have their time to spend with you to explain what’s going to happen, to say, “They said you would have this symptom, but you may not have this symptom. If you do, these are different ways we can treat it. It doesn’t necessarily have to go down this path you saw online.”

Getting a CT scan

I did not do a scan before I started treatment. I did one right before I started the intravenous treatment.  It was a CT scan with contrast, which was the first time I had that. I remember it feeling warm and feeling like I was going (to the bathroom) during the scan. 

They did that to see how my lungs looked, to make sure I didn’t have any lung nodules because my count was so high. They didn’t know how long I had been dealing with it. They wanted to make sure I didn’t have any metastasis. It  came back clear.

It’s a sterile room. There’s nothing there. You’re like, “I don’t want to lay on this table and have something happen. You’ve got to go straight into my arteries. I want to live through this.” 

I had already started to develop anxiety from it. They put a towel over my eyes just so I didn’t have to see the lights and all the equipment around. Then shortly after prepping me, they were like, “We’re going to go ahead and give you a little sleepy medicine.”

They walked me through the whole process. They told me how it was going to feel when I woke up before they put me to sleep, so I knew what to anticipate when I woke up. 

Chemotherapy

Cycle A chemo

Cycle A was every day. I had chemo every day for 5 days. It was for about 3 or 4 hours a day. I would get 2 chemo drugs at that 1 time. 

The longest one I had was what they call “the red devil” (Adriamycin or doxorubicin), and that was a 12-hour infusion. I think it was maybe 4 drugs total. 

Cycle A chemo side effects

The red devil made me very nauseous. I dealt with it via ginger chews. I chewed a lot of ginger chews. My mom went and bought me bags and bags. I also did a lot of smoothies that contained ginger as well. 

The part that freaked me out is that it turns your urine that ugly color, a red-orange kind of color. I remember I was so open on my Facebook page, I took a picture of it in the little urine hat and being like, “Y’all, look at this! What is happening to me?”

Nausea was bad for the other drugs as well. I didn’t have too many other side effects other than nausea, which was amazing, apparently. The nausea was horrible.

They had given me pain medicine. Occasionally, I’d get some joint pain or bad headaches. The pain medicine they were giving me caused constipation.

The worst part of being in the hospital was hemorrhoids. That was worse than pain I felt from any infusion during treatment. I had never had anything like that.

That’s when the doctor kept telling me, “If I could get you to feel better from these hemorrhoids, you’d be cruising through everything!” They tried creams. I had the little balloon-donut thing to sit on. I had sitz baths, everything. It was horrible.

Eventually, they had me drink the magnesium, and I ended up having to drink 3 of those to finally go. It was painful when I finally went. I was in tears. 

Ask for help with side effects

They were like, “It’s going to pass.” I said, “No, I need help.” The nurses were saying, “You’re not on the call often, but when you’re on the call button, you need help!” 

Cycle B chemo and side effects

There was a break between cycles. It was chemo every day.  I rarely had any side effects with Cycle B. They were giving me sodium bicarbonate prior to the cycle, about 5 days before coming in for Cycle B, because of the type of drug I was getting. I had no side effects.

Cycle A compared to Cycle B

A was very harsh. B was more mild. I loved B compared to A. I would be excited when I finished that first Cycle A. After maybe about 4 days of bad nausea and bad side effects, it’d be like next time is the good cycle, and you don’t get any side effects after Cycle B.

When I was in the hospital for an induction phase, there was a 2-week break. I really dealt with a lot of the side effects from that first round. Then they had me on the anti-nausea and watching my counts. I had 2 bone marrow biopsies in that time.

»MORE: Read other cancer patient experiences with chemotherapy

Chemo through spinal taps

They started the spinal taps. I had to get the chemo in my spine. They had to do that because they said the chemo given me intravenously does not go to my spine. A lot of times, people will continue to have ALL, and those cancer cells will still be there. So they had to do the spinal taps to put chemo directly into my spine. 

The inpatient experience

Both were inpatient. Then after the first B cycle, I went home for 2 weeks. Then I had to come back in the hospital for 5 days to start it all over again. Every 21 days I was back in the hospital, from January until July. 

It was chemo every day when I went for Cycle A, when I would get the red devil at the end of that. Once I finished that, I would go home, no matter what time I finished.

If it was 10 o’clock at night, they’d discharge me because they knew I didn’t want to be there. I’d rather be with my kids and lie in my bed.

I’d do chemo the first 3 days, then a day break. Then they would start the red devil that evening or, depending on what time I got into the room, would determine when they’d start the red devil the last day and when I would leave. 

What helped pass the time in the hospital?

I started a business while I was in the hospital. I started that from the hospital bed. I watched so much Food Network and HGTV. I had all sorts of plans for everything.

I couldn’t have that many visitors because you have no immune system, so they have you on the contact precautions, where not everyone can see you.

I did a lot of FaceTime and talking. I started that Facebook group, so I was on there a lot. I got involved with other groups on Facebook, support groups for leukemia and lymphoma, where I could ask a few questions and say, “Hey, I had these side effects. Did anybody else have them?” It helped me see I wasn’t alone.

I did a lot of researching on the symptoms and what I could do with the symptoms. Everybody deals with it in a different way. 

Just from being in those groups and talking to people, even talking to people when I was getting laps in in the hospital, everybody deals with it differently.

Different cultures, different backgrounds, so the biggest thing is talking about it. Don’t hold it in.

»MORE: Mental and emotional support when leaving the hospital 

I said, “Great! When does all this happen? I didn’t have to do my last cycle of chemo. This is great. We’re moving forward.”

She was like, “Yeah, so here’s your match.” She handed a piece of paper on it, and it had my mom’s name on it. She said a lot of times parents aren’t a good match, but my mom was a 7 out of 10. She said in these days that are so advanced, 7 out of 10 is perfect.

So my mom ended up being my donor!

Preparing for the bone marrow transplant (BMT)

In between that time, my mom had to go through all of her testing and found out that she had a sickle cell gene. They told us we couldn’t do it with just her doing the intravenous where they extract. She had to do the surgery where they did the multiple extractions of her bone marrow in her back. 

She started prepping for that. They had given her different medications to build up the cells. Then 2 weeks prior to the actual transplant, I went to the hospital. 

Getting radiation before the transplant

With people, it’s different. Sometimes they have to target certain areas of your body. They did total body radiation. My doctor said, “It’s small amounts of radiation, but through your whole body. You shouldn’t be burned anywhere.”

I would lie on the table for about 45 to 50 minutes twice a day for radiation for 5 days. It was like a big ray gun that was over the top of me. They would play music for me in the radiation room. I just had to lay there, getting radiation to my entire body. 

They had a face shield they put over me so I wasn’t getting radiation to my head. It looked like a helmet they would put on me. This machine would just go side to side, then tell me to turn to my right side, then turn to my left. All I could see was these lights moving around. 

That was hard. That broke me down. That made me super weak. My mouth was always really dry and hurting. Eventually, it felt like your skin was peeling a lot. That was the first point where I was like, “This is hard. This is cancer, and it’s not fair.”

»MORE: Read other patient experiences with radiation therapy

Waking up from the BMT

When I woke up, I was so hungry. I just wanted to eat. I don’t remember who was there because it was blurry at the time. I remember telling them I wanted a 10-piece nugget from Chik-fil-A. I got that 10-piece nugget. I have pictures of me sitting there with a big platter of nuggets in front of me. That’s all I’m eating.

I couldn’t taste them. I couldn’t taste anything. I remember they didn’t taste like nuggets. I dipped them in sauce. I couldn’t taste the sauce, but I wanted to eat those nuggets. 

Recovering in the hospital

After that, I was in the hospital for another 20 days. After the transplant, they allow you to do engrafting. They allow your cells to rage and the new cells to try and kill off the old cells. They let them battle within your body, is how they described it to me. 

Then they give you chemo that kills all the cells, and hopefully the only thing that comes back are the good cells. They gave me Dilaudid, high doses, which knocked me out.

I didn’t feel any of it because they said the side effect is your body feels like [it’s] on fire. Every morning at 8, at shift change, she would come in and push the Dilaudid. I probably wouldn’t wake up until 8 that evening. 

The first 100 days

That was for 2 days immediately following the 4 days where they let the cells do what they wanted them to do. Days 5 and 6 they gave me the chemo and the Dilaudid. Then they let it do its thing.

That’s when you start your journey. ‘The first 100 days’ is what they usually call it. 

Those were the hardest days — days you didn’t want to eat, don’t want to talk, days you may not even be able to get out of the bed. Those days are hard because your cells are rebuilding, and it’s going to take time. It’s not like they just click in and start rebuilding. You have to wait a few days. 

I ended up being in the hospital 32 days before I could even go home. They label it the first 100 days because they’re hard. 

Describe the recovery at home

I was having to go to the doctor every other day for 3 days a week. That was hard. I saw the doctor maybe once a week, and the other 2 days was to go to the lab so they could test my levels.

Then once a week, I had to go so they could look at my anti-rejection meds to see if they needed it to be altered or anything like that.

They’d look at my labs and say we need to go up or down on this one. I did really well, though, because in those first 100 days, I came off one of the drugs. It was too much for me and making me sick once my counts started to rise again. 

They said we’ll take you off of this medication and leave you on the other, which worked out well because I was really nauseous from that medicine. It felt like I had ulcers because I was throwing up so much.

Reflections

What helped move you forward during the lowest moments?

Through my whole entire journey, those 100 days mentally and emotionally were my hardest. I did a lot of crying when I first came home. 

It’s like, “I beat this, I kept the transplant, and everything’s going back to normal. I can do 100 days!” And I couldn’t. I remember breaking down in the kitchen one night.

My neuropathy in my hands was so bad. One of my kids wanted a peanut butter and jelly sandwich. To take the twist-tie off the bread hurt so bad because my neuropathy was so bad.

I broke down in the kitchen like, “I’m not normal. This is not right. Why am I going through this? This is not fair.” That was hard for me. I look back on it now, and I’m like, “How did I get through that?”

It was a lot of crying in an emotional time. I also started going through separation with my husband, so it was very trying.

I never blame cancer to say, ‘Oh, it ruined my life and my relationship.’ It made things hard, and you never know how other people are going to deal with it.

It was easier for me to stay positive because I was going through it. I think it was harder for him to see me going through something like that because I was military. I’ve always been strong-willed, doing what I need to do to get things done. For him to see me helpless in some way, I think it bothered him.

Those are the things people don’t tell you about. Your relationships could suffer. Not saying it’s going to go the way mine did, but you’re going to have to find something else that you guys can lean on that makes you happy because the old you is not there, that’s for sure. You’re not your normal self. 

»MORE: 3 Things To Remember If Your Spouse Is Diagnosed With Cancer

Cancer impact on your life perspective

Your whole life changes. It’s not just, “I had cancer, and now it’s over.” I wish it was like that, but it continues to rear its ugly head in my life. 

The biggest part of that is just knowing you have to tell yourself that you want to live. That this is still better than what it could have been.

Yes, my whole life changed. Everything was flipped upside down, but I’m also here. I still get to socialize with my family. I still get to see my kids. I still get to raise my kids. I still get to just have a life.

---

---

Acute Lymphoblastic Leukemia (ALL) Stories