Pam’s Story of Living with AML (July)
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.
July is awful.
Yes, I am home from the hospital, but now I worry about us being on our own. I am afraid I could die, and no one would help fast enough. I am still having so much pain in the back of my skull. I can’t help but think somehow this cancer is in my brain. No one knows why my skull hurts so badly. My bald aching head. I wear cold washcloths to make it all bearable. They are ordering an MRI and a lumbar puncture to see if the cancer is in my head too. I want to know but fear the answers. At least my doctors are honest. They tell you things matter of factly which at first seems so cold and indifferent, and then you realize they are not giving up. They deal with it, and so must I. They are not afraid, so I use it as my guide to just move on. My doctor tells me I am in the intermediate-risk category. Not as good as the favorable outcome, but not the high-risk-you-will-die kind of outcome. I hold onto any positivity I can.
My siblings have all sent in their DNA to the doctors. I can only hope and pray one of them will be a match. I am told without one of them being a match, I will die.
July 10, 2019
My brain scan was okay – leukemia was kind and spared my brain. My doctor called me on a Sunday night despite me being back in the hospital tomorrow, where he could have told me in person. He does seem to understand how scary and frightening this all is.
July 11, 2019
My genetic markers are in, and I am at the hospital. I am told the doctor will come see me later in the day to discuss. To me, this is not a good sign. How to keep my mind from racing? I practice breathing. It puts me to sleep. It is now 2pm and my doctor is in my room. He has papers in his hand. He sits beside me and tells me he has bad news but that he can and will help me. I have the dreaded FLT3 gene. I’ve heard all along that FLT3 was the bad guy. Not only do I have the FLT3, but I have the very uncommon FLT3 tkd. He hates to say it, but I now move into the high-risk category. My only chance of surviving is with a stem cell transplant. None of my loved ones are here with me – just me and the ugly truth. Maybe it is better this way. I can process my grief alone without guarding what I say. My nurse comes in as the doctor steps out. She pushes me aside, lays next to me, and allows me time to cry.
My husband Mike comes alone, and I tell him. Despite how I look and feel, he has the strength to hold his emotions in and just hugs and kisses me. He will tell the kids. Phew…He continues to be there for me, supporting me. I am so grateful.
July 15, 2019
Patty calls first. She is a 0% match. Not sure how that is possible as we are sisters. At first, I think she is kidding. She is going to say any minute, “I’m kidding.” But she never does. You don’t kid around with cancer news. All there is is silence. What else can she say? I know it hurts her as much as it hurts me to hear this news. I try to brush it aside and tell her one of the others will come through to lessen her burden. It is so hard to believe that there are only three people in the world who can save me. Now I am down to two!! Surprisingly I have not fallen apart. I remain hopeful or naïve, or both.
Two days later, my brother sends me a text. “Sorry, sis, only a 50% match. Bummer.” Bummer, bummer, who just says “bummer?” He knows only a 100% match could save me. A 50% match only buys me time. In disgust, I put on my shoes and walk out the front door. I have no idea why but I need to walk. I would run if I could, but cancer stole that ability for now. As I start down the street, I am trying to process. Is death my new reality? Then I try to figure out how to get ready for death.
Then the tears kick in, and I begin to sob. Then my knees grow weak, and I sit on the curb and cry. At first, they are angry tears, angry at my brother. Angry for the way he told me. How could he be so cold, how could he be so flippant? I am mad at him, but it is not him I am mad at. I am mad at this whole thing. The sobbing continues until I am overwrought with grief. How could I have been fine a month ago and now at death’s door? A neighbor comes out and asks if I am okay. I start crying harder. She sits next to me as I explain what is happening to me. She hugs me and tells me to wait for my final sibling before I go down any rabbit holes. She tells me then I can go down those paths but not now. For some reason, I believe her and pick myself up, brush off my bottom, and march home. I have to lie down as I am mentally and emotionally exhausted. I feel so alone. Who else can grasp what I am feeling?
I tell myself tomorrow, tomorrow I will hear from my middle sister. We have had our ups and downs, but lately, she has been trying to extend an olive branch. We are in a good place now. I will be brave. Tomorrow will be a better day.