My story begins with a diagnosis of hypothyroidism, but they noticed something unusual with my white blood cell count, which was elevated, but I had no infection. Further tests revealed that it was lymphoma. My initial diagnosis was incorrect, so I went for a second opinion at the University of Kansas Cancer Center. They performed extensive bloodwork, and my official diagnosis was primary splenic marginal zone lymphoma (SMZL).
I was told it was not common. It was May 22, 2022. From there, I underwent an eight-week course of immunotherapy. At the end of the eight weeks, my blood was tested, and no signs of disease were present. I was in remission. After that, I would go in for immunotherapy every eight weeks for two years. I completed treatment in June of 2024 and am still in remission.
In 2024, I participated in Blood Cancer United's Light The Night event with my sister and her kids. It was an experience that deeply moved both of us. The atmosphere was filled with hope, but it also reminded us of the emotional weight of what we had been through.
Throughout my journey with cancer, I realized how crucial it is for patients and survivors to have a support network. The road to recovery isn’t one you can travel alone. Having people to lean on makes a tremendous difference, not just for your emotional well-being but for your physical health as well. It’s a reminder that you’re not alone in this fight; some people genuinely care and reaching out for help can be incredibly important.
This journey has been as much about physical challenges as it has been about emotional ones. I learned to take better care of myself, a lesson I had neglected for far too long. I found a wonderful cancer center that dedicated the time to evaluate my situation thoroughly, offering compassionate care throughout my treatment.
One of the highlights of my experience was participating in the weekly chat on the Blood Cancer United website. It felt like a safe space where I was welcomed and accepted, a stark contrast to the loneliness I sometimes felt. While my family did their best to support me, there were moments when I longed for more connection.
The biggest revelation for me came when I realized that my diagnosis wasn’t my fault. Initially, guilt consumed me, and I blamed my poor habits for my illness. I thought that I should have done better to prevent it. However, cancer can strike regardless of how one lives their life. It’s unpredictable, and sometimes, it hits you when you least expect it—even if you’ve been healthy.
Accepting my diagnosis has been a journey in itself, but I’ve come to see it as just part of my life now. It’s a chapter I continue to navigate, armed with the knowledge that I am not alone in this endeavor.
Finding out you have cancer was a punch in the gut, and at first, I blamed myself for it. I now know that cancer can affect anyone. I am doing better now, but it will always be a part of me for life. I am a survivor, and I couldn’t have done it without the support of my family and Blood Cancer United. They have been my rock to help me navigate this difficult diagnosis. I am grateful to everyone who has helped me through this. I participated in the Debt Management Program offered by Blood Cancer United, and it helped me tremendously. I was able to get free of my medical debt and am no longer in financial distress. I can't thank them enough for their assistance.
Alyssa
primary splenic marginal zone lymphoma (SMZL)
