How Our Myelofibrosis Care Partner Story Began

Karina: In December 2016, I had an unexpected miscarriage. I went through the process of losing my child, and then started to move on with my life.

I went back to school. At the time, I was doing clinical rotations as part of the licensed vocational nurse (LVN) program. In April, I was on one rotation. I suddenly started having an excruciating left upper quadrant abdominal pain that wouldn’t go away.

The pain kept me up that night. It felt like I had a bowling ball inside my abdomen. I had to go to urgent care, where they did my bloodwork. They determined that my bloodwork was abnormal, alarmingly so — but they also found that I was pregnant again.

They told me, “These aren’t good numbers. We need to do a bone marrow biopsy right away.” But they also said, “We don’t know if you’re going to be able to carry this baby.”

I asked the doctor, “Are you sure we can’t wait until I have the baby? Is there anything else that we can do?” And he said, “No, this needs to happen immediately.” When I heard that, it was like I went into a fog.

Jesse: The baby was our biggest concern. Karina had miscarried some months before, as she mentioned. And of course, never in a thousand years did we think that she was going to get diagnosed with something as serious as this. 

Karina’s Symptoms Progressed

Karina: We found that the majority of the pain I was experiencing was because of my spleen. It would put tremendous pressure on my left and touch off persistent pain that would radiate to my back and shoulder. Because of it, I had to sleep on my right side for years.

I also discovered that I was anemic and began to feel significant fatigue. So I needed to undergo blood transfusions. And then, of course, the mental impact of discovering my pregnancy and being diagnosed with cancer amplified my fatigue.

I also began to experience neuropathy. I suffered from a burning feeling in my fingers and toes. It felt like someone had taken a torch to them. I remember being in a store and having to step outside it and remove my shoes because I thought I might have ants in them that were biting me. 

Jesse looked up and researched all these things I was experiencing. He told me, “We’re going to get a second opinion at MD Anderson in Houston.”

How We Took Back Control After the Diagnosis

Karina: We learned more about myelofibrosis. We found out that it’s a kind of chronic leukemia and it also is a kind of cancer called a myeloproliferative neoplasm (MPN).

Patients are literally in a state where they’re watching and waiting for symptoms to manifest. They don’t have control over when they stop taking certain treatments, like oral chemotherapy and blood transfusions, and certainly not when they start experiencing symptoms, such as night sweats and bone and spleen pain.

After I was diagnosed, I waited two years before I shared what I had with people. Firstly, because I didn’t look sick, and unfortunately, too many people stereotype cancer patients as being without hair, looking frail and sick, and so on.

I had all my hair, looked healthy, and acted healthy, too. From day one, I wanted my kids to see me as a strong mom who could still get up and get things done, continue to work, take them to and fetch them from school, and so on. 

I not only managed that with the help of Jesse my myelofibrosis care partner, but also ensured that my spirit wasn’t shaken and that I had control of how my mindset was going to be. Because in the watch and wait phase, I was determined to stay in sync with my faith and my conviction that I was going to smile during the storm.

Being in that watch-and-wait phase helped me build a lot of resilience. I needed to be patient with how long my treatment was going to take. At the time, I had no idea that it would be six long years later that I would have my transplant. 

Jesse: I think over those six years, as Karina’s myelofibrosis care partner, it was important for me to constantly remind family,  friends, and coworkers that Karina was sick. She mentioned earlier that she didn’t look sick. Of course, she was sick and on chemo — some pretty aggressive oral medicines to boot. But yes, she powered through. She was a trooper, a mom, a student, a wife who was herself so supportive of her family.

It was rough seeing her, because there were times when she wasn’t the same Karina. She was tired, and I had to accept that. And so my role for six years was to be her little battle buddy. Just to make sure that she was okay.

Our Son David Was Karina’s Stem Cell Donor

Karina: I found out the hard way how difficult it could be for a Latina like me, or for most other people from a minority group, for that matter, to be matched with a potential stem cell donor through the registry.

MD Anderson had me on a huge list, but Jesse said, “We can also advocate and go out there ourselves,” And he started orchestrating this big effort. Despite all these efforts, we still couldn’t find a donor.

MD Anderson came to us and said, “How about seeing if your son David is a match while we continue to search?” We asked David if he would be willing to undergo bloodwork to see if he could be my match. It was a no-brainer for him, and he underwent the bloodwork.

I got a phone call a little while afterwards. “We found your match. It’s David.”

I could never put into words what that phone call did for me. I had prayed so hard for this, and my prayer was answered. My donor was under my roof this whole time.

I remember telling him, “I’m so proud of you. Thank you so much. Whether this works or not, you’re my hero. I feel that you’re gifting me life.”

I did a graft of David’s cells. I’m in remission as a result.

I’m a living, breathing miracle because my son gifted me life.

What We Want Other MPN Patients to Know

Karina: The most important thing that got me through is the power of the mindset. When we can’t control what our body is doing or what’s to come, when we’re uncertain of many things, the one thing we can control is our outlook about all of it.

And be easy on yourself. You’re going through so much. Love yourself during this time. Know how to facilitate a healthy mindset. It’s beneficial from beginning to end.

Our Advice for Other Caregivers and Care Partners

Jesse: Have a supportive mindset, but take care of yourself as well.

As a myelofibrosis care partner, or a care partner in general, you can sometimes feel that the world is on your shoulders. Seeing your significant other struggle and hurt isn’t easy. Not having all the answers is extremely difficult. 

Education is one thing, but above all, have that positive mindset, and be supportive of the person that you love who is ill.