Hi, all! I just wanted to write another update about my health situation. The past 2 months have not been too different from the end of 2024. My main issue health wise are the side effects from my medication. I still struggle with nausea, light-headedness, and hives pretty regularly. Luckily, the other side effects have been much less frequent (like broken blood vessels in my eyes, night sweats, and muscle weakness), but still pop in every once in a while. It has been a few months of trying to figure out my new normal, and how to adjust things to make life easier. We’ve had to add a grip bar and non-slip mat to my shower so I don’t risk injuring myself when I often get light-headed and dizzy. I have curated a “cancer bag” that I carry with me at all times so I can hopefully be prepared for any side effects that come my way. I carry lotion and anti-itch medication for the hives, pain medication for bone and muscle pain, anti-nausea meds and a travel vomit bag, and masks, hand sanitizer, and sanitizing wipes so I can stay healthy while immunocompromised.
As for clinical/administration matters, after struggling a bit with communication with my oncologist, I’ve made the decision to switch oncology clinics as well as providers, to an oncologist who specializes in blood cancers. My care team at Cherokee Nation has been so immensely helpful in hearing my concerns and working to get me to a doctor who I feel comfortable with and confident in. My new doctor also has much more experience with chronic myeloid leukemia specifically. I had my first appointment with the new doctor a few weeks ago, and had a follow-up call with them just this morning. Already, just in those two interactions, we have been given so much more clarity and understanding regarding my current situation, as well as hope moving forward.
The doctor went over all my records since my hospitalization and diagnosis in November 2024. He has confirmed that as of right now, my CML is considered to be in the chronic phase. CML presents in 3 phases, known as chronic, accelerated, and blast (or blast crisis). The chronic phase is the most stable of the phases, and for patients with CML, is the goal if remission is not yet possible. This is great news. The new oncologist also has set out goals for my treatment, standard to typical CML treatment, that we had previously been unaware of. As we move forward, I will be getting labs done less frequently (my arms are grateful), and we will begin monitoring what is called the BCR-ABL. This level is what represents the genetic mutation that causes my CML. Another bit of good news, my doctor has confirmed that he has found no evidence of any other chromosomal abnormalities! Further abnormalities of the chromosomes can lead to even more complications with CML, like developing AML (acute myeloid leukemia), or risking the need for a bone marrow transplant. All of these developments have eased my mind after quite a few weeks of confusion, worry, and fear, as we had some deep miscommunications with my first oncologist regarding my disease’s status and treatment plan.
That being said, for now, I am doing well. My doctor feels confident in my hope for reaching remission someday. In the goals he laid out for me, we will be focusing on making sure my BCR-ABL is as low as possible, by adjusting my meds and seeing what works best, if necessary. At the end of March, I will have been on my targeted chemotherapy for 3 months. At 3 months of being on this medication, my BCR-ABL should be between 1-10% (with the goal of eventually reaching as close to 0% as possible, or 0%). As of January, mine was 55%, and we will test again at the 3-month mark. When the BCR-ABL is no longer detectable in my blood, I would be in what is called molecular remission. With molecular remission, patients can work towards getting to treatment-free remission, which can last for years. This will be our ultimate goal.
On a personal note, I have been having a rough time. I’ve started therapy in the recent months, and it has been hard, but also deeply helpful. My therapist is a cancer survivor, so he is able to truly empathize with me and my current situation. We have discussed my anxiety in general, but also specifically in regard to my health. Also, as many of you know, last week we lost my sweet dog, Banjo. He had only been sick for about a day and a half before he passed, so it was quite the shock. Banjo has been a part of our family since I was in high school, and he truly was the best dog. My heart is broken over the loss, and my grief has been heavy. As I have already been attempting to manage my grief over my health situation, it has been extremely difficult to add on the weight of losing such a dear friend and presence in our home. I am taking heart in believing that Banjo is running full speed in Heaven now, where his body is whole, and he is able to delight in that.
As for prayer requests, I ask that you continue to pray for my body, in regard to the cancer itself, as well as the effects of taking chemotherapy daily. While chemo is a miracle for me, it is still a frighteningly harsh medication. I also ask that you continue praying for my health team, whether it be my current team of doctors and coordinators, or the future members of my health team. If you would also pray for my family, as we all navigate the loss of our Banjo, and continue to navigate my own care. I could not imagine if our roles were switched, and I were having to watch my brother, mother, or father going through what I am right now, on top of caring for them. They have all been so wonderful, and I thank the Lord for not only their physical and emotional care and help, but their guidance as well, as they help me make hard decisions that are affecting the rest of my life.
As a last request, I ask that you pray for my community. Whether you are a friend of mine from home, college, work, a family member, friends of my parents, or however else we may be connected, I ask you pray for those in the NE Oklahoma/NW Arkansas region. I have known multiple other people from these communities that have been diagnosed with cancer in the recent months as well. These numbers are disheartening, and I implore you to add our area to your prayer list—that we find healing, wellness, and wholeness again. If you would, specifically add the names Sarah H., Tim, Mitzi, and Sarah B., to your thoughts and prayers.
Thank you so much to everyone who has been keeping up with my journey through CML. I appreciate the time you’ve taken to read this, reach out to me, pray for me, and think of me and mine. If you’d like to read about the different types of remission from CML or the phases of CML, I’ve added some links to some short articles about both. I have also added a link that discusses the prevalence of cancer in Oklahoma, discussing the higher than the national average mortality rate, as well as the higher risk of Native American and rural communities being affected.
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