Mary Clare’s Relapsed Acute Myeloid Leukemia Story

Mary Clare was diagnosed with acute myeloid leukemia (AML), the most common type of acute leukemia, at just 36 years old.

In her story, Mary Clare shares how she got through chemo, 2 bone marrow transplants, full body radiation, a clinical trial, and recovery. She also highlights the mental, emotional, and sexual impacts of cancer.

I don’t think I’ve moved on. I think that I’ve learned how to manage the uncertainty. The side effects. The future.

Not knowing if things will come back and also just acknowledging that the support system that you think you had isn’t always there, your world gets pretty darn small sometimes.

But there’s a lot of beauty in that.

Mary Clare B.

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

Symptoms & Seeking Answers

How did you know something was wrong?

I was running programs for a college with lots and lots of high school students, who were coming to the college that summer to be part of arts programs. It was a hectic, crazy job. I had 350 students I was working with from all over the world. I was exhausted. 

Normally, I respond to situations like that with all adrenaline all the time and then crash the week after the program is over. But I had felt poorly. Everything upset my stomach, and I was very fatigued and tired.

I knew something was up, and I thought it’s a cold [or] it’s allergies. I had gone to the medical practice on campus, and they said, “Oh, you just have a cold. Here’s some Flonase.” I didn’t think anything of that.

A couple weeks later, the program ended. I felt pretty crappy, and I started to have really bad headaches. I’m a migraine sufferer from my early 20s.

But it was nothing like migraines. It was these headaches that would wrap around the back of my head. Just the worst headache of my life, so I ended up going to the urgent care at the University of Chicago, which I had previously gone to. 

What happened at urgent care?

As soon as I came in and talked about my symptoms, they were very concerned. First they wanted to do a spinal tap. That scared me, of course. [I was] thinking, “Oh, I just need better migraine medication or something.”

I knew something was wrong, but I had no idea that a blood test later that day would lead to me being admitted to the hospital that same night.

How long did it take to get the blood test results?

The urgent care is an offshoot of the main hospital of University of Chicago, so they have labs that are ready. I was able to go from my urgent care appointment across the hallway, get a blood sample taken, and then I came home. 

I live about 10 minutes away, and they called maybe an hour later saying, “Something’s not right. We’re thinking about having you come back to do the blood again. But just keep your phone by your side. I’ll call you back.”

When did you hear back from the doctor?

Actually, that evening we were packing to go on a trip. [It] was going to be my first trip with just my husband and I. My daughter was little. I was making dinner and packing, and the phone rang again as we had sat down for dinner. 

It was the doctor that I had seen at urgent care, a young doctor saying:

This is very serious. You need to come into the emergency room right now and pack a bag. You’re going to be staying here for more tests and more observation.

How did you process the sudden news?

We don’t have family nearby, so our first thought was, “How are we going to do this with my daughter?” [She] was 3 at the time. “How do we do this with a 3-year-old in tow?” 

We just go to crisis mode. For us, the feelings don’t come till a little bit later. What are the practicalities of this? I think parenthood comes with that.

My daughter’s good friend lives 3 doors down, so we called them. They didn’t answer the phone, so we just packed a bag for Twila (daughter) and walked over there, trying to say, “Mom is not feeling well. We need to find out what’s going on.”

She immediately was like, “It’s my first sleepover! This is amazing.” She was just excited. 

»MORE: Patients share how they processed a cancer diagnosis

It was very odd. You’re putting on a face for your child.

My husband took her to the neighbors’ place and knocked on their door. They didn’t answer the phone because they’re in the middle of story time for their girls, but they welcomed her with open arms and said, “Whatever you need.”

It really made us be able to take our parent hats off and be able to absorb some of the situation. It felt really hollow. It felt like dread. It felt like something I’ve never felt before.

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

How did you decide where to go for medical advice and treatment?

My husband works for the University of Chicago, and my daughter went at the time to the laboratory schools, which is associated with the university. We would very much call ourselves a university family.

The majority of our friends work for the medical center or our academics, so we’re kind of in that world already. It’s just down the street. My husband walks to work, and I previously have worked there.

It felt like we weren’t going anywhere new or different; this is our neighborhood. It’s just a block from my husband’s office and a couple blocks from my daughter’s school.

It was a bit surreal in that regard, because it was just like we’re driving past our grocery store. I know where to park and all. Just very strange knowing that we were going there not knowing what that next piece would be.

We were totally clueless that I would be in the hospital for the next 6 weeks [and] that we would be dealing with this many years later as well. 

We were pretty darn clueless, and we were hopeful, scared. I’m probably making really stupid jokes because that’s kind of how we deal with things.

Describe the first procedures at the hospital

What was surreal is that we had an appointment at the ER, which is not something you do. They knew we were coming. It almost felt like going to like a restaurant and saying, “Here’s my reservation. I have a reservation.” They had a room ready for us. 

It didn’t take very long until 3 doctors, at least 2 of them oncologists, came in the room. They laid it out that based on my blood sample that they had taken earlier that day, my white count was really strange.

The rest of my blood results were out of whack. Their best understanding at that time was that I had leukemia of some kind, some sort of a blood disorder.

They did use the word “cancer” but said that they needed way more information. What they did know is that things move very, very rapidly with blood cancers and blood disorders. To be able to provide me the best care, I needed to check in to the hematology-oncology floor at the new hospital just a couple steps away. 

It was a Friday night, so we actually had a weekend in the hospital where they checked in a little bit, but I didn’t really see the person who would become my team. 

The 6 people that would come and really talk to me did it Monday, so it was very odd. I was like, “This seems so financially crazy to have me stay here for 2 days and just kind of check in on me, where I felt fine.” I didn’t feel awful. I felt a little sick but not terrible.

What were the first steps once you were in the hospital?

Monday, they hit the ground running at like 7 a.m. It was meeting with teams and learning what the plan of care would be.

Are we going to start immediately with chemo? We would do a bone marrow biopsy to get more information. All of those things went into place. 

It was a head-spinning day, but we had that weekend to be able to kind of rally our team and support and to do some research on our own. We had actually [gone] into meeting with the oncology team pretty informed.

A good friend is an oncology pharmacist. She deals a lot with transplant patients, so we were pretty well informed.

Bone Marrow Biopsy & Diagnosis

Describe the bone marrow biopsy

I’ve probably had about 20 bone marrow biopsies at this point. The first one, I had no idea what I was in for.

They basically explained it to me, “We’re just going to take this tiny little sliver of your hip. It’s a very quick procedure. It’s done at the bedside. We don’t have to put you under or anything like that; we will numb the area.” 

In my mind, I had thought of like when I had a mole removed or something like that in dermatology, that it would be something akin to that, but a little bit more. I think in a lot of ways, my doctors and my team have tried to not totally scare patients. 

Not all details are shared before certain procedures. This particular one, [they said] you’re going to feel a pinch in a burn, there might be pressure, things like that.

What I realized pretty quickly is that it’s sort of like getting a root canal on your butt. That’s the best way that I could put it, because they do a little bit of work [and] have a bit of a drill.

I was pretty well drugged. Over the years of doing this, I now know my favorite cocktail of drugs to have before before a biopsy. 

Was family in the room?

My husband was sitting there, also having no idea what was going to happen. My mom had flown in from Virginia, and so she was on the little patient couch at the end of my bed.

You’ve had about 20 bone marrow biopsies. What’s your advice on how to deal with them?

I think anyone who’s going undergoing a procedure where you’re either getting your port in or a PICC line — a bone marrow biopsy, in particular, it’s good to know how your body reacts to different medicines. 

For example, if they give me Dilaudid, which is a very typical drug to be given that causes you to be mentally out of it, that for me was successful as far as no pain, but I would be vomiting for hours after.

I would feel way out of it and would just have to sleep for the rest of the day. I realized that was not the right drug for me, and I had to ask for something else. 

I ended up with what they think is a lighter alternative, which is a heavier dose of Ativan mixed with Benadryl. I’m not mentally engaged with the pain. Certainly, I can feel things, but with Ativan you have a very limited memory from that experience. It does incur some memory loss, which in this particular case is great. I was totally down and okay with that. 

Also, in previous outpatient settings, after using just the Ativan, I could sleep for a little bit. After the procedure on the table, maybe an hour after that. Then I’m a little out of it. I certainly can’t drive myself home.

I’m able to walk the block or 2 to the parking garage, have another cup of coffee at home, and restart my day. It doesn’t derail everything. It took a while to figure that out. 

It also took a while to figure out that there were some members of the team that were seasoned and more experienced in doing difficult bone marrow biopsies.

I’ve learned that I’m one of those people that it is tricky. Some people have more forgiving bones, and I don’t. I learned the same thing goes with blood draws.

I’m a really tough stick, and so you need someone who has the combination of skill and confidence. If they don’t — if they have the skill but they don’t have the confidence, it’s not going to happen. Likewise, if you have the confidence but not the skill. Those are some things that I’ve learned over the years.

How long did it take to get the bone marrow biopsy results?

For the bone marrow biopsy, we received some news the next day. They had everything you would need on site at this particular hospital because it is a research institution, so they were able to get some of that staining back quickly.

They were able to get a deeper understanding of how many blast cells, but with the type of work that they’re doing, they also do a couple different other stains that take more time to develop. Then I would receive more information later in the week, if not the following. 

That’s when they were able to tell me pretty much this is AML leukemia, based on what the cells looked like. They were able to tell me my percentage of blast cells, which really didn’t mean much to me at the time, but that it was aggressive.

There’s no stages for leukemia. There’s no Stage 1 and Stage 4. There’s nothing like that. It’s percentage of disease. 

It’s not a cancer that is often found very low levels. It is in the 20+ percentage of these abnormal white cells that are overcrowding and hacking your body.

For me, learning that it was like 20 or 30% didn’t mean a lot. But knowing that you’re not supposed to have any, that it’s considerable, meant that they needed to move and act quickly. Once the body starts replicating the cells, it’s just going to continue and continue until it destroys your body.

How did you tell your daughter about your cancer diagnosis?

When I was first diagnosed, my daughter was 3 and was pretty clueless beyond, “Mom is sick.” She’s a smart young lady. She is inquisitive to the nth degree, so there was no keeping things from her. 

I brought her to doctor’s appointments. When she was able to visit the hospital, we brought her. We didn’t shield her from much. We didn’t go into big, long details if something was going on. But if something was happening with my heart, I told her.

We had many medical supplies at home. My lines had to be cleaned. Infusions at home happened at some point, and she learned how to do all that stuff when she was 3 and 4. She’s probably a future doctor. 

Over time, when I’ve had major mobility issues and issues with syncope and things like that, she is a caregiver. Her capacity to take care of other people is well beyond her years, and well beyond what anyone would expect from a child.

It breaks my heart to think that I’ve taken part of her childhood and innocence away from her.

But I don’t think we could have survived any other way.

She has very close relationships now with my mom, her grandma, and my husband’s mother (her other grandma) that would have never ever happened if cancer didn’t come into our world.

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

Did you consider a second opinion?

Luckily, I was at the University of Chicago. They have an adolescent and young adult clinic for blood disorders and specifically leukemia, so I was able to be with the foremost experts, not even knowing it.

I was starting to talk to people in my research and my husband’s research like, ‘I have the option of having one of the top experts, Dr. Wendy Stock, as my oncologist.’

It was an interesting process because she wasn’t rounding when I first came in, but she learned about my case through the weekly transplant meeting.

She came to my bedside and asked if she could be my main oncologist, which was just so cool. It was very patient-facing and very warm to have someone say, “Can I be your oncologist? Here’s my credentials, and this is why I’m interested in you.”

Induction Chemotherapy

What were the treatment options?

They had already presented some clinical trial options, mainly just different dosages of different chemo agents that they thought might be better for me, because I was in my 30s.

Typically people who get leukemia, if you look at the percentages, high amounts would be infants and very, very young children, as well as older adults over 70.

There’s a very, very small group of young adults, who would be classified between 18 and 40, that would develop this disease. It’s not unheard of, but it’s pretty rare.

What was your chemotherapy treatment regimen?

First off, it’s called induction chemotherapy. I believe it’s a 3-1. There are 3 days with a certain cocktail of drugs. I was only given very, very high doses of chemo over 2 weeks.

You had 3 days of chemo but stayed in the hospital for 6 weeks

The reason I was in the hospital for 6 weeks is because you cannot leave until your blood counts are at a level where if someone coughed in your vicinity, you wouldn’t get that. It would become pneumonia. 

You need your immune system to be functional in the smallest amount possible. When you’re given this very, very heavy, high-dose chemo, it just destroys your immune system, as well as destroying the cancer. 

That’s a major side effect, and they don’t want to release you back into the world, even if that is isolation in your home, until you’ve reached a certain standard with your blood counts. It took a while for mine to go back.

Describe your PICC line

I had a PICC line installed in my arm, which was a bedside procedure. [It was] somewhat uncomfortable, but not terribly.

I’ve had 2 PICC lines. That’s basically a line that goes directly into your heart from your arm. That would be a way for them to easily give you medications and drugs without having to start an IV each time. 

It’s semi-permanent. You don’t have PICC lines for terribly long; 6 months is typical. I was hooked up with that.

What were your chemo infusions like?

Once a day, I would be given a drip bag of those chemo agents. That was typically a couple different bags hanging from an IV pole. The first couple days of that regimen, I was able to watch TV and be up and about.

They said walking the floor was okay, but I was not allowed to leave the hematology-oncology floor, go to the food court in the building, or anything like that. I was wearing my normal clothes. I was able to take a shower. I was able to do kind of my normal things the first few days. 

After that, the side effects of chemo, where it really is starting to ravage your body, kind of took over. My blood counts dropped; red, plasma, and all those things were problematic. I started to be on that IV pole a lot because I was receiving platelets, red blood product, and I was receiving fluids as well.

As the weeks went on, they added potassium and magnesium because your body is really being depleted of a lot of the essential things that it needs to run.

Describe more of the chemo side effects and what helped with them

Main chemo side effects from the first induction round were really poor appetite, things started to not taste right, and just overall fatigue. Upset stomach was another thing, sometimes diarrhea, sometimes constipation back and forth with that.

Not only was I starting to feel poorly around the third day. No appetite. I did get a rash, which they think was from the red blood product. That happened once and never again. I was very uncomfortable. 

I think initially it was the huge rash, head to toe, just itchy, and felt yucky. As soon as I presented with that, they had dermatology come and check me out. 

When you do have a rash on the outside of your body, there’s something going on inside as well. You want to make sure that that can be looked at and dealt with quickly.

We realized at that point that you can get calamine lotion in a spray form. It was super helpful to have my mom, my husband, and some close friends who could run to CVS or the drugstore to be able to pick up little things you need. 

I also packed a bag for one night. I had no clue that I would be needing my family to make sure I had clean socks and underwear and that I had the comfy kind of pajama-type clothes. That was really helpful. That first week or so, it was kind of like, ‘Well, what do you need?’ Setting myself up to be pretty self-sufficient.