It started in September of 2020, the start of this new journey in life called acute myeloid leukemia (AML). September 13th was the day that something needed to change. Something was just not right. She just was not herself and couldn’t figure out what was wrong. A doctor had told her to get to the hospital to get some fluids. Fluids were not what was needed, but in hindsight, fluids were just what was needed to find out what the root cause of the problem was. After hours of tests, life changed. “You have leukemia.”
My heart and mind were not sure what was going on; I just went into survival mode. Survival mode in the sense of support, support for another who needed a lifeline to hold onto. Fear is a powerful motivation for inner strength, to look like you are okay with what is going on even though your insides are breaking down. Sometimes I feel like people are just asking how am I doing to make me feel better, or they just ask because it is the thing they should do. We, as caregivers, need to know that people really do want to know how we are doing. As caregivers, we need to take care of ourselves so we can take care of our loved ones. I am not very good at taking help from others, and I am not sure I will ever be. I just know that you need to figure out what you need to continue to be there for whoever needs your support.
I encountered many caregivers at the hospital. Many who just nodded at me and others who said, “hello.” You begin to see the same people every day and realize that they are going through some of the same things you are. We are not the ones who have the illness or feel the pain from the treatment that hopefully will make them better. We do, however, still feel pain. My heart is in pain every time I know she is in pain, either mentally or physically. You need to find what works for you to get through your pain. Sometimes I try to read, sometimes I play a musical instrument, sometimes I just sit alone and think.
Something that you need to remember is that people you know do not say things on purpose that make you feel sorry for yourself. “Sorry” is the one word that really made me feel bad, I am not sure why. I am not sorry for being in this fight. I am the one who is supposed to be up late listening or just being present in whatever she needs from me. I am the one who is supposed to be up early for whatever is needed for me to get done so that I can be there for her. Just do the best you can to do the best for them. They need you, and you need others for help. Try not to feel bad if you are having fun or having a good day. I know she wants me to take time for myself, but it is easier said than done. Just make sure that you continue to fight when they are tired, continue to hope when they are losing hope, continue to be there to advocate for hope always.
You are in the hospital and counting on trained professionals to help you through this journey. Make sure you treat them with the utmost respect as they are the ones who went to school and worked hard to take on a profession that is not always glorious. These healthcare workers are and should be loved by us.
It is amazing that your great days are the ones with milestones that you never imagined—no rash, no hot sweats, and no beeps. Milestones like “this is my last chemo” are a great one, one that comes with the hope that it is over. Her strength really gives me strength, her optimism really makes me optimistic. We have laughed and cried through this experience, and I must tell you the laughter is so powerful.
So now she is home. What I did not know was that this journey is not over. There are always follow-ups and reminders of how hard life can be.
Today is July 29, 2021, and we drove to California last night to the City of Hope Hospital. This morning we woke up to go find out the results of her bone marrow biopsy. I was so scared, so nervous, and not really knowing what was going to take place. Until you hear those words “remission, total remission,” you never know. As she walked out of the hospital, she found me. I saw her face, that beautiful face of excitement. She told me the news, and we both just grabbed each other and cried for what felt like forever. It has been such a long road, and this road was definitely not straight and easy.
Life has a funny way of making you realize what is important and the importance of life. Her name is Ashley Farkas, and she is a champion today and every day.
Ashley
Acute myeloid leukemia (AML) survivor
