Pam’s Story of Living with AML (June)
Written by Pam Wilson
When I set about to tell my cancer story, I just had a hard time summing it all up so I just assumed I was never going to be able to write well enough to be called a writer. For some reason that has always been important to me. I want to convey to others how I feel. While in stall mode, I picked up my journal. To this day, I cannot actually remember how I wrote it. I am going to give you a couple of these entries. I figure most people like to hear the raw truth, no editing, no one judging you. I want you to know the truth of living with acute myeloid leukemia (AML). I don’t say surviving AML as if it’s over. It will never be over. This is a big, huge, scary, and mean cancer. To that end, I want to share what I penned in my most vulnerable moments.
Today is my 58th birthday. June 29, 2019.
I have been in the hospital for 25 days now. I have AML. How? I do not know. I was told just bad luck. I have not been able to do much but eat, walk, visit, and sleep in short spurts. When I was diagnosed, I wanted to journal to my kids, to mike, to my family. I still do not feel as if I can write all I want or need to say. I continue to wait for the Mayo Clinic to give us some generic markers for a diagnosis and treatment course. That is what it is like. A lot of waiting. Waiting for IV antibiotics, waiting for blood transfusions.
The chemo has stopped. For now. I am waiting for my blood levels to climb which has now started to happen. I can now go off my floor at the hospital but often weakness or my bowels keep me at the mercy of an escort. My family comes daily but they can only offer brief stays as I tire and I loathe people watching me. I can and do walk in circles on the unit, I stare at the walls and long for normalcy in my life. Perhaps a month in here is small in the big scheme. Hard to see that when I feel like a prisoner.
I am emotional. One day I feel good and strong, the next I am in tears. It just seems so surreal. But, there are so many others who battle many more things so why should I be spared?
I have had a few positives out of this. My kids are finally able to be with Mike again. I never thought that would happen. They had to mature against every grain as they fought to hang onto anger. That is my greatest blessing out of this mess I am in.
I am tired.
July 6, 2019
I made it home! Even a day earlier than I was hoping for. My numbers came up and now I begin phase two. The wait is incredible. Why should one have to wait a month to find out if I have a mutation putting me in an unfavorable recovery option?
I started going for outpatient follow up on Tuesdays and Fridays. I have been referred to The University of Kansas Cancer Center for consult and to ask questions about a transplant and of course my odds for beating this monster.
The headaches are my only complaint aside from the port that is always tugging at my chest wall. I had an MRI this morning and maybe some answers for the vice grip on the sides and back of my head.
The thing that gets me down, is that I cannot talk freely about my concerns, pains, and fears. Everyone has a positive spin: “at least you are home.” “You made it through chemo, so the blood work is nothing.” All of course to alleviate their fears and keep me positive but it sucks not being able to be honest. To say I am angry, scared, worried and to then hear someone say but,…you are home, etc. I want to scream. So mostly I cry silently as I know it does no good to express all these emotions that are considered negative. Just like getting the chemo, bone marrow tests, I am alone in this journey. I guess we all are when you have to face something unpleasant. You just have to move through and with it.