How My Essential Thrombocythemia Was Found

Andrea: I didn’t have any symptoms. I was feeling great. Luckily, I had insurance, so I would go for a health checkup once a year to make sure everything was well. My doctor said, “Your platelets are a little high. I’ve been looking at the trend and I don’t like what I’m seeing. Why don’t I send you to a hematologist-oncologist?”

My platelet count was not as high. Normally, they don’t treat until your platelet count is 100,000 or more. I was at about 600. When I went to the hematologist-oncologist, he said, “They say not to treat this low, but I’ve had some bad experiences, so I would like to treat you.” I agreed. I felt young, vibrant, and energetic, and I had no symptoms, so I thought I’d get over this and it would be fine. I had no issues for 10 years.

Going to a Rare Blood Cancer Specialist

Andrea: It was scary. You walk in, and there are all sorts of people. This is going to sound strange, but while walking through the halls, I thought, “Hey, look at me. I’m healthy. Look at these poor people.” I was thinking that I was so lucky. I’m not in a wheelchair, nor do I look like I’m going to keel over. I’m walking to my appointment, so things can’t be that bad.

Dr. Verstovsek gave me plenty of time, talked me through what I could have, and told me the tests I was going to be required to take so they could give me a proper diagnosis, and then we’d see what would happen from there.

I had a bone marrow biopsy, which can be very daunting and scary, but I have a high threshold of pain. I’m the type who doesn’t need anesthetic when I go to the dentist, so I thought the bone marrow biopsy wasn’t a big deal. It was a little difficult in the beginning because you’re very tense and scared, but it’s easy.

When I got my diagnosis, he told me that there were several different things we could do. We can watch it, but at that point, the only thing they could offer was a clinical trial.

Bringing Up a New Clinical Trial to Her Doctor

Andrea: I stopped the drug. I got acute back pain and shingles. They put me on another drug, and that didn’t work either. I met with a local transplant doctor around 2011, but we determined that I wasn’t quite ready for a transplant at that point.

It worked for me for six years. I wasn’t great, but I was better than I was. I felt much more confident and alive. You have a 5- to 6-year window, until death ensues, to be perfectly honest about it, and so I made sure that I was seeing people and living life as well as I could.

After six years, my blood count started to drop. I became transfusion-dependent. I was having transfusions first every two months, then every month, and then every three weeks. That’s when Dr. Verstovsek said, “I think it’s time we looked at a transplant.”

Denise: We knew that there was no cure for myelofibrosis. Since there were no options, we had no choice. It was either do the transplant or don’t and continue suffering. Her quality of life was suffering from anemia.

When we made the decision, she did a lot of research. She had a lot of conversations with other transplant patients. What was it like? How was the transplant itself? What was the care like? What’s important? There wasn’t a lot of information out there at the time. Through that, that’s when we said we have to do it.

Overcoming the Fear

Andrea: I didn’t know if it would work. Fortunately, my sister was my donor, and she was a 10/10 match. Prior to the transplant, I had my will set up and got all my affairs in order because I didn’t know if I’d live or not.

The scary part about it was that I was making the decision. I wasn’t in an accident. I wasn’t forced to do this. I was taking my life into my own hands, and that’s what the scariest part was because if it didn’t work, I had nobody to blame except myself.

Talking with My Doctors

Andrea: The doctors came in once a week with 5 or 10 people. I didn’t have a lot of communication with the nursing staff, but they were incredible. They were there when they were supposed to be there. They were always available. Denise and my sister were both there. Denise kept a spreadsheet of all the medications. The staff could not have been more knowledgeable.

I got mouth sores in my throat. The only thing I could taste was Oreo cookies. It was very hard to walk. They had all these incentives. MD Anderson and the nurses did so much to encourage people because the last thing you want to do is eat or walk.

When my blood count started to increase, they could see that the stem cells from my sister were beginning to work. They had a party and cheered. It was very positive. I never felt like the nurse told me something just to answer me. If they didn’t know, they didn’t know, and they would come back with the answer.

How I’ve Changed

Andrea: My identity shifted. I was much more guarded and careful. I didn’t let my emotions show nor speak about how I was feeling necessarily. I felt embarrassed about it.

I don’t feel that way anymore. It changed my life. It’s not a death sentence. It’s very hard when you start reading and doing your research. It’s changing every day.

Don’t give up. Don’t sit and say you’re going to die. I can’t emphasize that enough. Your attitude is who you are and who you’re going to be. If you let the disease get to you, it will. But if you fight it with everything going on, it is not a death sentence. You will make it.