Michele’s Acute Myeloid Leukemia Story

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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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How I Got Diagnosed

Video (Part 1)

Michele tried to ignore the bruising, tiredness, and shortness of breath.

At 24, she was living an active and healthy lifestyle. Michele enjoyed playing sports and exploring the outdoors with friends, but the persistent bruises and itching prompted her to several doctor’s visits. Her labs eventually revealed she had acute myeloid leukemia (AML).

Here, Michele tells us how she faced and accepted her diagnosis.

How I got through the “scanxiety”

When I was first diagnosed or when it was first happening, I thought this is minor because I never get sick. Like it’s not going to be a big deal. 

When they mentioned Lyme disease, I thought maybe I got bit by a tick or whatnot. But when they did the bone marrow biopsy, I didn’t realize what even the test was for. My thought process is, “I just don’t know what’s going on, but I can’t imagine it’s bad.” 

I still do remember him telling me I have leukemia. My mom was there. I didn’t even realize leukemia’s blood cancer. I didn’t know much about it, and it was hard.

The doctor actually treated my grandparents, too, but for a different form of cancer. It’s nice to have familiarity with him. Not that I was around that much, but he treated my loved ones as well.

I remember it as a little superficial. I thought I’m not going to have any hair. When I got moved from the normal wing to the hematology wing, it was just so much nicer. 

Back to telling new people, sometimes I have a tough time. That’s something I struggle with even today, just because I don’t want people to pity me.

I think taking it in strides and segmenting out my work friends, my family, and then having them tell each other so I don’t have to feel the need to tell everyone about my diagnosis.

Later on, as the weeks progressed, I felt more comfortable, and some came to visit me.

During the first week back, I texted my home friends who live around the area, and I told them it’s fine to tell everyone else. Some of them also came and visited me in the hospital.

It just made me happy. They were so supportive.

What is AML?

I didn’t even really know what type of cancer and leukemia. When they told me about it, they’re still doing tests.

There are different subtypes, different mutations. All that medical jargon, they went over and explained to me. They also talked about what could happen in the future. For example, fertility is a huge issue with chemo.

They talked about transplants, because not everyone who has AML gets a transplant. I also remembered them explaining maybe it was genetic for me. 

I wanted more information, too. I thought it was extremely helpful just to understand.

Going Through AML Treatment

Video (Part 2)

Her life turned upside down, but Michele bravely faced AML treatments.

The IV chemo, stem cell transplant, and dozens of pills in her daily pillbox brought devastating side effects to Michele — physically, mentally and emotionally. However, she consistently and presently went through it all.

Michele tells us how AML treatment affected her.

What made you change hospitals?

It was the cryopreservation surgery. The hospital I got diagnosed with was a Catholic hospital, and they don’t do fertility preservation. I ended up going to Yale.

»MORE:Fertility preservation and cancer treatment

I kept a notebook and would write everything down, any questions that I thought of during the day that I’d want to ask the doctor. My mom is in the medical field. Her boss, which is also a close family friend, would ask all the medical questions. It was a comfort for me to have that extra resource there.

I would ask even the nurses lots of questions. Since you see the same nurses, while you only see the doctor once a day unless something’s happening, it’s helpful to talk to them. The nurses were there for me the whole time, too, communication-wise — another line of support in general.

Describe the bone marrow biopsy

I remember the first time because this was the scariest time especially.

At the hospital where I was originally diagnosed, they used something like a drill. That was the only time they ever used a drill. I remember the sound of it and my hands getting clammy. Honestly, it wasn’t that bad.

That time, I did have shooting pain down my leg, but all the other times no. Perhaps it’s the nervous reaction. Not from seeing the needle, but because the needle is huge, and they’re drilling a hole there.

Tips on dealing with a long hospital stay

I would definitely go on to the wing itself. I would go on walks a lot. I’d do laps. I believe physical health does help mentally as well. The little walks help, too. It’s just nice to be outside and get some fresh air. They have little trees and a little waterfall in the garden.

Then I would wave if there are other people walking, or the nurses would talk to me.

I remember the royal wedding was happening when I was diagnosed, and one of my nurses said, “I’m only going to do this for a couple of minutes.” Then I said, “Stay and watch the royal wedding with me!” She stayed for a little.

I made really good friends with nurses. That definitely helps pass the time and helps emotionally as well. 

There are days when I’ve tried so hard to eat, but there are days I just couldn’t eat anything. I would try to take supplements. It’s crazy how little you can eat, and yet you’re throwing up. Even if you try to eat something, you just throw it up.

My parents would say, “Michele, just eat. Please, just another bite.”

All of that just weakened my body so much. Obviously, I love activities. I love running. I love being active. All that. 

What helped gain back some weight?

During my first transplant, the chemo was just so intensive. It took me almost a year to get back to regular eating.

I just couldn’t eat a lot of food, even a year post-transplant. 

I eventually did see a dietician about it and talked about food. The Leukemia & Lymphoma Society has a lot of resources, and I talked to them. My work has a program called Consumer Medical, and they sent me cookbooks suggesting what’s good to eat when you’re experiencing certain symptoms.

In general, a transplant is wiping away your stem cells. You’re starting from scratch. The first 100 days are crucial.

There’s this stigma and perception of what a woman should look like.

For my situation, even if I only gained 5 pounds, that’s a lot. Having my body transform so much was a lot harder on me. 

It was great to see the dietitian and reach out to other resources as well.

»MORE: Tips on food and drinks to help during chemotherapy

For a person who’s maybe 60, it could kill them. That’s how they make the chemo bag for your specific regimen. Chemo takes a little time, and that’s probably why I was in the hospital. I was just very sick again and started to lose a lot of weight. Same process. The first 100 days was just extremely tough on the body. 

My immune system is so low. You’re almost like a newborn baby, and I had to get all my vaccinations again 1 year post-transplant. I was susceptible to all the diseases out there, and I was on 20 medications when I left.

I had a Hickman. They put in a PICC line, too — so much medication going through you. 

My husband helped me keep track of them with Post-it notes to remind me. We bought those pillboxes, and I remember thinking, “Oh my gosh, I never thought I’d be young and using these pill boxes!”

One of the perks of the hospital is when you go to transplant, they have this kit for you, which included a pillbox. Mine’s big with 4 slots for each day because I’d have morning, noon, afternoon, and evening dosages and regimen.

They also had a calendar printout of all the medications. Post-transplant, they gave me all the medications, so I have them right away before I go home.

When you leave, a pharmacist will come and talk to you to explain everything. The pill chart was an explanation of what the drug is. You’ll have their number if you want to contact them, the doctor, or some stores.

I was still living with my parents at the time, so they were definitely a great resource to have. They would help me with medications, too, but I was very on top of things to get them done. I have my little chart that they gave me and then the pillbox. I would put the pills in all of them. It took a little organization as well. 

A lot of meds, a lot of information. Feel free to ask the person you’re talking to if it’s okay to record them on your phone. It’s just nice to be able to reference something later, especially if you can’t write notes that fast. You can sort out the information after. 

Describe the follow-up routine

After the transplant, the follow-up was 3 days a week. Then it went 2 days a week. I did have MRSA twice during that time period. I was hospitalized for a week, both times inpatient.

Then it went down to once a week and then twice a week. Then, in July of that year, I started going once a month.

By October 2018, I went slowly from 3 days a week to once a week, then to once every other week. By July, I started going once a month.

It’s still a lot. On day 30, I get another bone marrow biopsy. Day 100, another bone marrow biopsy. Day 180, another bone marrow biopsy. Then 1 year post-transplant, another bone marrow biopsy. Then I started getting vaccinations.

You’re going through something so hard right now, but there is a light at the end of the tunnel. You will get through this.

Relapse and Treatment

Video (Part 3)

Learning that her acute myeloid leukemia had relapsed, Michele pressed on. She talks about her second stem cell transplant, round of chemo, radiation, and targeted chemo pill Xospata. Watch how Michele braved another shot at healing.

It hit hard emotionally, because I just didn’t think you could relapse after a transplant. I thought it was 99% effective. I don’t know where I was getting that statistic from, but I thought it was effective. 

So it just hit hard.

I remember I didn’t even want to tell my friends, because I kept thinking, “This isn’t real. They didn’t do a bone marrow biopsy. How can they see it?” I guess [with] the lab work, they had scans where they could see it. 

I know you’re not supposed to Google diagnoses, but that’s what I did. It gave me some affirmation for myself.

Processing news of the relapse

I didn’t believe it at all. I was in denial.

I was just lying there while a light was shining on me. It’s really not that bad. Just the mental thought of it is so much worse than it actually is. It took about an hour, and then I flipped sides. There’s different grades, but I got the lighter dose, so it’s not as bad.

They’re still doing my blood work. My creatinine was a little high, and that was the big concern.

I have an EKG once a week just to monitor the heart. I think a big part of it is the possibility of sending your heart racing, seizures, or possible fainting. There’s some nausea, but not as bad as when you were on the IV chemo.

Another big thing with MRSA is it’s 6 weeks of vancomycin through an IV. I was able to treat myself with an IV at home and not have to spend all the time going down to the hospital. They would send the medication straight to my house. I can fridge it, and I save a lot of time. 

I noticed for my first and second treatment, they sent me a pole with a bag. With the second one, it’s almost like a ball I could keep it in my pocket. It was pressurized, and it makes it just so much easier for the patient.

Survivorship: Life After Diagnosis

Video (Part 4)

Her bright young mind couldn’t have comprehended her fate at first, but Michele chose to see the positive side of things.

With the love and support of family and friends, meditation, and enthusiasm to meet new friends, Michele now shares her story to give hope and inspiration to fellow young cancer patients.

It does take an emotional and mental impact, because you do want to feel beautiful. Having that support system is just so key in helping with that. I also did look into wigs and had fun with it. 

Deciding whether to stop or continue working

At first diagnosis and the transplant, I was at home for 100 days and not socializing.

The world was normal then. I really just want to get back to work without overpushing myself.

I went back to work part-time in January. My employer was great. They let me ease into it. I ended up having to go back to the hospital inpatient for a week, then took some more time, and then eventually was able to start full-time. They eased me into it, which is super nice. 

»MORE: Patients talk about working during cancer treatment

The Leukemia and Lymphoma Society has a Connection Program, where I can touch base with other people who are around my age group. I recently joined, and I’m excited to know more people around my age.

I wish I knew it during the time when I was going through treatment, but I’m glad to know it now. Just to give you that extra comfort.

The importance of fertility preservation

It came to me as a shock — realizing its impact on my fertility.

It was something they addressed right away. I switched hospitals to do it. It was too late to do preserving eggs, so the next-best option was preserving my tissues, which will produce the eggs. 

The process of cryopreservation

The fertility doctors all came in to talk to me about it. It was nice to hear their knowledge of the concept and have the appointments. I came in for it after my first 2 rounds of chemo.

That’s my first time in anesthesia, but they knocked me out and then just grabbed some of my tissue.

I remember when I was getting wheeled into the surgery room, one of the anesthesiologists told me about her dad just having some type of leukemia, and he just found a donor. It takes 2 years if you got a random donor in the registry. She’s finding out who his donor is, and it gave me a positive light on that aspect. 

The surgery part and just having that whole concept of fertility issues is definitely difficult to grasp, but understanding that there are other options out there is reassuring.

»MORE: Fertility preservation and cancer treatment

It changes your mind and changes your understanding.

I think that as terrible as it was to go through, it changed my outlook on life. I realized how important each day is and how much love there is for each other. 

You never know what someone else is going through, and having that understanding and empathy makes our society so much better.

No question is too dumb to ask. When you need something, don’t be afraid to speak up.

»MORE: How to be a self-advocate as a patient

I want to share my experience as much as possible. Regardless of the diagnosis, cancer affects everyone. You probably have a family member, yourself, or anyone that has gone through this experience. It is terrible, but you learn the love, and you relate to people. 

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