My leukemia story started in February 2019. I was short of breath, so I had some basic bloodwork. It came back really abnormal, and I was told to proceed to the ER. The next few hours were a complete blur. Once at my treatment hospital, the information was extremely overwhelming. I joined a clinical trial, which has since changed the way acute lymphoblastic leukemia (ALL) is being treated.
The treatment is long and grueling. I felt like it was never going to get better. I had a much harder time mentally than physically. Physically wasn't a walk in the park either. Between bone marrow biopsies, the spinal taps, which never went in the first time, medication side effects, and allergic reactions, it all felt like too much. The steroids always caused insomnia and crippling anxiety, and all I had was sitting at home stewing over my life. Without work, I felt like I didn't have any distractions, so I thought about my leukemia and thoughts of relapse constantly. I always tell newly diagnosed people it is going to get harder before it gets easier.
Once I got to maintenance, it did get easier. I was able to return to work. I was exhausted, but it helped get me mentally in a better space. I trudged through maintenance while working in healthcare during COVID-19, but I have amazing coworkers who helped me through.
I am finally six years out from diagnosis and now only have to see the doctor once a year. It was bittersweet. Going from constant supervision to basically on your own is scary.
I had to find ways to cope with the mental anguish and depression during treatment. My husband was and will always be my rock. He has been there with me since day one. He saw the good, the bad, and the ugly. I found journaling helped me get some of those intrusive thoughts out and take some weight off of me mentally. I became a member of an ALL Facebook group and found a lifelong friend there. We may live hours apart, but we know that each other understands this journey. We have been each other's therapists for years now. We actually got to meet in person a few times. My message to people in the leukemia trenches right now is that it will get better. Feel your feelings and do what you need to survive. Don't push those away who want to help, but also don't hang on to those who won't. You may lose some friends along the way because your life is consumed with beating this disease, but you will become closer than ever to the people who are present for you.
The pictures that are highlights to my journey are my husband and I finally getting to take our honeymoon to Europe. We got married shortly after I got diagnosed and had to wait four years to be able to go. The other is meeting my fellow leukemia warrior for the first time. We talk daily, but it was different getting to see her in person. It is the worst statement I kept hearing over and over again, but it is actually the truth: "One day at a time." That's the mindset you need to get through this awful time. Once you get through it, normal may not look the same anymore. Your body and mind won't be like it was before treatment, but try to embrace the new you!
Hillary
acute lymphoblastic leukemia (ALL)
