Introduction

I’ve been a flight attendant since ‘98, which has always been my dream job. I grew up in Chicago and went to college at the University of Illinois.

I’ve lived in a lot of interesting places. My favorite place in the world is where I live now in Annapolis, Maryland. My husband lived here so I moved here. We bought a house in 1996 and had a great life.

At the end of 2021, I was told I had myelofibrosis. I didn’t have many options. The treatment for it was a stem cell transplant.

It’s a very rare blood disease. I’ve never heard about it and I don’t know anybody who has. Luckily, I had a sister who helped me navigate through the whole process.

I did that for a year. One time, my red blood cell count was good enough that I didn’t need it. I thought that was odd but a good sign.

Shortly after, when I had routine blood work done, my platelets were very, very low so my general doctor wanted me to see an oncologist. He did a bone marrow biopsy and turned me over to the University of Maryland.

I felt great. I wasn’t fatigued. I played a lot of tennis and nothing.

The only symptom was I bruised easily. There were bruises on my hands, legs, and arms. I would wake up with itchy arms.

Reaction to the Diagnosis

It was frightening, but I felt confident this wasn’t something I was going to die prematurely of because there was a treatment for it.

My sister’s a nurse. She’s my right hand when it comes to looking at my test results. She’s my interpreter because a lot of that’s so foreign to me. She was also my donor.

Getting a Second Opinion

I went for a second opinion at Hopkins. The doctor recommended a book about myelofibrosis, but I could never get my hands on it.

When people say, “What were you out with?” I say it’s a kind of blood disorder. I don’t say myelofibrosis because nobody knows what it is.

Bone Marrow Biopsy

They looked at my counts and my platelet counts were getting gradually worse. They said the next step was a biopsy, which was pretty much a no-brainer.

They got the diagnosis from the bone marrow biopsies. I’ve had probably at least 10 of them in my life.

Going Through Transplant

I went through radiation for two days for 15 minutes on each side.

I never knew how chemo worked. You get a port and it goes right in. You don’t feel a thing. They called it the eat, drink, and be merry days.

After the chemo went in, I felt really good. I couldn’t leave the floor so I would go on the treadmill.

My nurses predicted that by around day 10, I would feel sick and wouldn’t have any energy or appetite. They were right. Everything people say about chemo is true.

I had diarrhea pretty much for two months. It was a slow healing.

In my ward at the University of Maryland, I was the youngest person there. I was amazed that older bodies could go through that.

Transplant Didn’t Work As Planned

When they found out I accepted only 2% of my sister’s cells, they looked at it as somewhat of a failure. I was so mad when a nurse said my transplant was a failure. I asked Dr. Rapoport, “Why did she call it a failure?” He said, “It was a bad choice of words. It didn’t work as planned. You still succeeded in getting rid of the JAK2 mutation.”

I was so upset about that because it meant my immune system was weak.

I was on VALTREX (valacyclovir). When my refill came up, I asked Dr. Rapoport, “Do I still need to be on this?” He said no. I’m in the process of getting vaccinated again.

They offered clinical trials to everybody on the floor. It required coming back to the hospital. I live an hour away and I didn’t want to do it.

Life Post-Transplant

I wasn’t allowed to vacuum. I wasn’t allowed to go anywhere without a mask. I wasn’t allowed in restaurants. I wasn’t allowed to eat anything that other people brought in.

They made me paranoid about germs, going outside, and eating anything that hadn’t been washed. No sushi, nothing undercooked, and no lunch meats. They put the fear in me. If I got sick with pneumonia or COVID, it could have been really bad because I didn’t have anything to fight that off, but I didn’t.

Follow-up

When I go to the doctor, I have a little fear, but Dr. Rapoport emphasizes that my numbers have been stable. They’re not off-the-charts great, but they’re not getting worse. He’s a great guy to deal with because he always looks on the bright side.

She called me as we were taxiing out. I wanted to know what was going on, but she said, “I’ll talk to you when you come back Sunday,” because she knew I would probably break down.

I thought she was going to tell me she couldn’t be my donor because we didn’t match. When she said, “I have a tumor in my chest. It’s big and it’s near my heart,” we started crying and saying, “This doesn’t make any sense.”

She went through the PET scan and the biopsy of the tumor. We clung on to the hope it would be benign and it wasn’t.

My daughter, who went to Hopkins, didn’t have it affect her as badly. They put her on chemo and she handled it well. She rang the bell and had a cancer-free celebration.

Words of Advice

I rave about Dr. Rapoport because he was positive, but there’s a lot of negativity.

You have to rely on other people to keep your spirits up. Take in all the positives. I had people come over and do puzzles with me. We’d watch Ted Lasso and I’d eat a lot of ice cream. To be without anybody that loved you or cared for you would be dark.

When I was in New York and started running a fever, I called the University of Maryland and said, “Can I come in tomorrow? Because I’m running a fever. I don’t feel that bad. I’m just running a fever and I know you don’t like that.” She said, “Get to an emergency room right now.”

I said, “Why? Why can’t I see you at eight tomorrow morning? I’ll catch the next flight.” She said, “Because the infection could go into your bloodstream.” She said this was an emergency.

I went to the emergency room and, as you know in New York, that took about six hours. They diagnosed me with pneumonia. I went on medication and got over it in a couple of weeks.

You deal with fatalistic people who are the glass is half empty. Find a positive person who points out the good things.