Pre-diagnosis

Introduction

I’m originally from Hungary. I moved to the US [in July 2021] to marry my husband. Five months after moving here, I was diagnosed with leukemia. Since then, it’s [been] a crazy, crazy year.

I’m a communications specialist. I work for a nonprofit in Durango, southwest Colorado. [I’ve worked] in public relations and marketing my whole life. I’m a former university lecturer.

I really like outdoor activities — hiking, biking, mountain biking, running, walking outside, winter sports rafting — everything which is active and outdoors, I am a fan.

That week, I felt feverish every night. I was out of breath after washing my hair [that] I had to sit down. I had night sweats, which was also very new to me.

I went to [the] urgent care finally because I had mysterious bruises all over my legs. I [had] a massage before that and I was thinking, Oh, maybe it was a little strong. All these symptoms for a healthy person, you just feel something is not okay so I went to the urgent care. It was a Sunday afternoon. I spent three hours. They took a full blood panel and told me that someone will call me from the hospital.

[That] same day [at] 9 p.m., the head of the emergency unit in the Durango hospital called me that my blood numbers looked really [bad] and I should be in the hospital. I should pack a bag because I would stay. My husband should come with me and it shouldn’t take longer than an hour.

I obviously freaked out. I didn’t really know what was happening.

Diagnosis

Reaction to the diagnosis

Immediately, I was crying. I told my husband I don’t want to die. I told him if he doesn’t want to do this with me, then he doesn’t have to. And he said I’m stupid and I should stop. I was in shock, honestly.

It was really hard because first of all, I was only in the country for five months. We just got married. Everything was new. The language was new. All these medical terms and everything is just new. It’s not easy even in your own language, but in another, it’s like, “Sorry, what’s that? What’s that? What’s that?” So I was in shock, freaked out, and scared. But you cannot really do anything.

I felt lucky they caught it and they were so prepared. After I was airlifted, I met with my oncologist [for] the first time at 5:30 a.m., half an hour after I arrived [at] the Denver hospital. He’s amazing. I [felt at] ease and relieved that, “Okay, I’m in good hands. I have a good doctor and he will cure me.”

Reacting to a cancer diagnosis: How cancer patients feel in the moment »

Initial appointment with oncologist

They found the oncologist for me in Durango. My doctor goes to Durango to care [for] patients there so they [found] him for me.

When I arrived at the hospital, we did a bone marrow biopsy. Then the next day, I had the exact diagnosis. My doctor said I can have a second opinion if I would like to, but I don’t really have time for that. So [there] wasn’t really an option to choose another doctor or to think about that.

I read really good reviews about him and all of it was true because he’s amazing and I feel very lucky. Colorado Blood Cancer Institute and the Presbyterian/St. Luke’s Medical Center are amazing so I really feel lucky. Everyone says that if you have to be somewhere with blood cancer, then this is the place you want to be.

I was so worried that I didn’t have time to think about that so it wasn’t like for a lot of people. They got the diagnosis and then, “Okay, let’s find a doctor. Let’s find an institute.” It was given but I feel lucky because it’s awesome.

Induction phase

It’s a pediatric treatment, which they used first for children [and] young adults also get it. I get five different kinds of chemotherapy via infusion. I got steroids every day, which was probably the worst part considering the side effects because it just makes you totally immunocompromised. It makes you totally fatigued. I lost all of my muscles so I was weak.

I had lumbar punctures and IT (intrathecal) chemos, which means they put chemotherapy into your spinal fluid. I had one bone marrow biopsy [on] the first day and another one on the 28th day. Sometimes, blood transfusions and other blood products [were] needed. I have anti-viral tablets and antibiotics every day.

Consolidation phase

I came home. I had two weeks off — one and a half [to] two weeks off — and then I went back to the hospital for a week for the consolidation part.

Consolidation is separated [into] three different parts and almost every part, I had to go to the clinic for a couple of days or a week to see how [I would] react to the different chemos. I got infusion chemos, oral chemos, lumbar punctures, blood transfusions as needed, and sometimes steroids.

Possibility of a second cancer

We then [had] a panic situation because I had a bone marrow biopsy and my doctor called and told me I developed another type of leukemia. I have 50% blasts in my bone marrow and it seems I developed AML — acute myeloblastic leukemia. I had to go to the hospital again for a month and [I was told I] will need a transplant. [That] was a Thursday and they scheduled the hospital stay for Monday.

I went to the hospital. I had another bone marrow biopsy and we were waiting for the results to start the chemo the next day. The doctor came into my room to tell me that the bone marrow biopsy looks better and [we’ll] put a hold on starting chemo for another day. The next day, they discharged me because they said another result came back and it seems better.

All in all, we waited [for] two [to] four weeks [and] checked how my bone marrow [was] doing on its own. I had lots of blood tests.

I didn’t develop another type of leukemia, which was amazing. When they are in a growing phase, these blasts can seem like cancer and they probably [caught] them [at] the wrong time. But I don’t wish [those] one and a half months [for] anyone because it was crazy.

Find out how cancer patients and survivors cope with scanxiety »

It was amazing but also so many days and weeks waiting and the uncertainty was also like, “I just want to know something. Even if it’s bad news, I just need to know something.” But [thankfully], it wasn’t so.

We waited when I was discharged. I had weekly blood tests and we saw how my bone marrow was doing on its own. Then I had a repeat bone marrow biopsy months later. It was another two [to] three weeks waiting for those results. I got the preliminary results quite fast, in maybe a week, but we were still waiting for detailed results [to find out] if there is a mutation or stuff like that. But everything seems good.

Side effects from chemotherapy

It could be vomiting, nausea, fatigue. You could have rashes. You could have fevers. My doctor told me, I [could] get any kind [of] infection. I can have that so-called moon face [when] your face gets a little moon-ish. You have a bigger belly but everything will be so skinny so it’s kind of weird. I didn’t have that.

I was thinking about my marriage, too. Oh my God, how will I look? And also hair loss, which was a big thing for me, too, which I think I handled better than I thought. All of these [symptoms,] it’s just so scary.

It wasn’t that bad [because] I didn’t get [an] infection. I didn’t vomit even once. I didn’t have moon face. I didn’t get rashes.

I became fatigued. There were days when even [taking] a shower was a challenge. I had some headaches and nausea from lumbar punctures because the first two, they did it with a bigger needle. Since then, they changed it to a small one and I [didn’t] have any problems. But the first two, [I got] pretty intense headaches and nausea after.

Managing nausea and vomiting from chemotherapy »

Hair loss

I had long hair. I asked five different doctors on every visit, “Will I lose it or not?” Then I discussed with my husband that I would just cut it shorter so I wouldn’t wait until it’s falling and have hair on my pillow when I wake up and everywhere. So I asked everyone to be sure that I will lose it. And when they said I will, [so] I cut it short. 

When it started falling [out], that’s when we shaved it. When I looked into the mirror, that was the first time I started crying. My husband shaved it then he showed me the mirror and I started crying but that was it. I started to wear beanies when I was out of the hospital room [or] on the floor working.

Two days later, I looked into the mirror and I was like, “Okay, it’s a sign of the fight,” and I will be not proud of that, but I will just accept that. Since at that point, I was totally fine. 

I thought I will freak out when I cut it but that didn’t happen so it was great.

How to cope with losing your hair during chemotherapy »

He’s just amazing. I don’t know how he does it. I was never in a caregiver role and I think it’s one of the hardest. Patients have to survive. They have all the pain, the treatments, and everything they have to deal with, but caregivers feel helpless seeing their loved ones. They also have to work, do stuff around the house, and handle insurance, which was also a big deal for me. When I [got] to the hospital, my insurance didn’t cover this doctor and this hospital so we had to change it and it wasn’t easy.

Caregivers have to be everything. Their life doesn’t stop. He’s amazing and I feel pretty lucky.

Cancer treatment is not like in the movies. And I think lots of people like, “Oh, yeah, so you vomiting 24/7 and you are just totally down and you cannot do anything.” And I’m not saying it’s not happening or it cannot happen and every person is different, but it’s not always the case.

He had to go through all of it. I’m not saying it was easy because it’s probably harder for him than me, to be honest, to see your loved ones getting through this and you feel helpless and useless.

I don’t think I can really plan or really want to, to be honest, because I feel you cannot really. I just realized that anything can happen at any point so I feel, let’s just do everything day by day.

Obviously, I would be really happy if everything would stay like this, that my numbers are kind of okay. I’m not immunocompromised so I’m able to go to a restaurant and have lunch or I can go to a gym when there is more than one person. That would be amazing. But I don’t think I want to plan.

The only good thing [is that] probably from the beginning of next year, I won’t have weekly blood checks, just monthly. If I have to go to the clinic only once a month, that is amazing. That’s a huge difference.