30, Thriving and Diagnosed with Chronic Myeloid Leukemia

Karie Hodges – 30, Thriving and Diagnosed in the Time of Coronavirus

Posted 2020-10-08

Like most of us, Karie Hodges started 2020 filled with hope for the new decade. She was about to turn 30, and with her wedding date set for the fall, 2020 was destined to be a landmark year. Even a case of the flu in late January wasn’t enough to deter her intentions to have a great year. Now moved into her new house, she decided to switch to a PCP that was closer to her location. Little did she know that blood work drawn by her new primary care physician would change the course for her year ahead.

We asked Karie to share her experience of being diagnosed with and treated for Chronic Myeloid Leukemia. Here’s what she had to say:

How did you find out you had Chronic Myeloid Leukemia?

While I was out of work with the flu, which ran through my entire family in January, I decided to go ahead and catch up on a bunch of doctor appointments once I was feeling better. I previously saw a nurse practitioner that moved out of state, so I needed a new primary care physician. I made the appointment and had my blood drawn to run labs before seeing the doctor– just the usual thing you do when you’re establishing a new doctor-patient relationship.

They had drawn my blood multiple times and called me to come in a day before my scheduled appointment to meet with the provider. When I made it into the doctor’s office, he asked, “Are you okay?” I was fine, but on the inside I was freaking out. My doctor had counted my white blood cells himself before calling me into his office to say, “Your white count is 120 – it’s critically high. Hopefully your body is just having an exaggerated reaction to the flu, but it could be a type of leukemia.”

The possibility of a cancer diagnosis was shocking, given that I was 29 years old at that point, relatively healthy, didn’t have any issues – and I felt fine. So, I was rolling with the idea that it was probably just my body freaking out from the flu. My doctor wanted to be proactive, so he referred me to Dr. Castillos at Personalized Hematology/Oncology. Before long, the leukemia diagnosis was confirmed. I had Chronic Myeloid Leukemia or CML.

Describe your first appointment at Personalized Hematology/ Oncology.

I work in a hospital where Dr. Castillos sometimes serves as a hospitalist at night. I had known him from that, so I was super comfortable going there. When he confirmed the diagnosis, I was shocked at first; then after having a little time to process it, the fear set in. It was so overwhelming. But Dr. Castillos and his staff really put my mind at ease.

He immediately talked about treatment, how the medication used to treat CML is very effective, and that people often go into remission and ultimately may not have to deal with the cancer anymore. The diagnosis was heavy, but hearing Dr. Castillos share the success stories of others with CML was like seeing a light at the end of a dark tunnel.

What has your cancer treatment been like?

When I first came in to do labs, Dr. Castillos overnighted my blood work to a lab in NJ to identify the specific chromosomal abnormality. The Philadelphia chromosome was detected and that is how I got my confirmed diagnosis of Chronic Myeloid Leukemia. I was going out of town that weekend, and his team worked hard to get me started on my medication to help with the lactic acid buildup to prepare for beginning chemo when I got back.

Karen, who wears many hats at Personalized Hematology/Oncology, was relentless in helping me with the medication process. She was so phenomenal in working with my pharmacy to make sure I got everything I needed right away. I went to Texas for a week, and when I returned, I started the oral chemotherapy. I can’t say enough about everybody in the practice who worked overtime to ensure that all aspects of my treatment were organized.

“I just really appreciate how Dr. Castillos has a bedside manner that’s unmatched. As a nurse working in a hospital, I deal with physicians all the time. He has a way of making me feel super educated about my diagnosis but also really comfortable at the same time.”

There have been times I’ve gone for treatment, and Dr. Castillos has called me back from the waiting room and taken all my vitals himself. I was just there recently, and he even drew my labs. There can be four people standing around who could do that for him, but he was having a conversation with me. It was so fluid for him. He has started my IVs and hooked up my iron infusions. I’ve had nurses come up to me and say, “If that man doesn’t sit down!” He just wants to be involved in everything, which really speaks volumes about the kind of doctor he is and care he provides.

What was the biggest hurdle in your cancer treatment?

Well, add Coronavirus into all of this and that’s when it starts to get fun. The floor that I work on in the hospital was turned into a COVID unit at the beginning of March. So, now I’m immunocompromised and working with COVID patients. That was another whole emotional issue for me. But, my management and all my coworkers were really supportive. They’ve been great at keeping me away from it. I haven’t actually had to take care of a positive patient yet, and we’re almost seven months into being a COVID unit.

The chemo has not been horrible. Many patients have it so much worse. I take oral chemo everyday. My body did take a little bit to get adjusted to the medicine. I had days where I felt really tired, nauseous, and then especially working nights – I am always somewhat fatigued. But, after the first three months, I felt like my body adjusted pretty well. Most days I don’t experience any symptoms. The only thing that makes it obvious that I have cancer is having to take the chemo everyday. I bruise a lot more easily now, and I have had some hair loss but other than that I feel pretty normal and healthy.

Those are the most significant things, but I don’t know if I could have laid out a better way for everything to be handled from when I was first diagnosed to now. Everyone has been super great!

Where are you now in your cancer journey?

Dr. Castillos checked my labs two weeks after being on the first chemo medication, and my white count had come back down to normal from 120 to around 5. He was super impressed with that! At my three-month check-up, I still wasn’t in the first phase of remission. I’ve just had my six-month check-up and my numbers are still not exactly where Dr. Castillos wants them so he decided to change my medication. At this point, I am just trying to find a new medication that sits right with my body. I am now on my third medication as the second didn’t fare well with me.

What wisdom would you share with a new leukemia patient?

I really recommend NOT going on Google until you know more about your specific diagnosis. There are several different kinds of leukemia, and all the treatments and their survival rates are very different. It would have added a ton of anxiety if I had tried to figure all that out myself. I waited until I got a firm diagnosis and then started to research my specific condition. I did not let myself go down the Internet rabbit hole that causes unnecessary worry. (but my fiance did and he was a wreck for weeks)

I hope other patients have a really good support system around them. I would also tell other new leukemia patients that it’s okay to lean on people. I personally have a knack for keeping stuff to myself, and I learned that it was okay to be vulnerable and upset and let the people around you help and reassure you. Once you get past that initial shock phase, try to see the silver lining in all situations. My type of cancer is treatable, and I always tell myself I could have had it so much worse. For that, I am thankful.

Treatment for Chronic Myeloid Leukemia in North Carolina

Personalized Hematology/Oncology of Wake Forest is thankful for stories like Karie’s as well. As a provider of oncological, hematological, and primary care services we have patients of all ages, some of whom receive our care across decades. They become like family to our staff and appointments becomes more like warm gatherings. If you or someone you know thinks they may have symptoms of leukemia, please see your doctor and discuss your concerns. They can run the appropriate tests if necessary. We’re glad to hear of early diagnoses like Karie’s, but some cancers can sneak up on the unsuspecting. Maintaining your health with regularly scheduled tests and appointments where you feel your concerns are heard is one simple step that can be taken towards cancer prevention and early detection.