Pam’s Story of Living with AML (August)
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.
Remember when I said July was awful? Well, it was until it wasn’t. On July 25, I had a wake-up call about the horrors of this cancer. I woke up that day to a weeping eye. Within one hour, it turned into light sensitivity so severe we had to shut the blinds and pull the curtains to keep any light from coming in. Even this was not enough. I had to put on a baseball cap and drape a towel over my head to keep the pain tolerable. After an hour of this, I taped my right eye closed and headed back to the ER. I continued to have eye pain for six solid hours, with various doctors coming in to assess this new side effect. Eventually, with steroid eye injections, I began to feel relief. I left better that day with steroid drops to quell the progression.
Once I got home feeling depleted and exhausted, I got a call from my middle sister, Linda. It was such a scary moment for me. Was she calling to check in, or was she calling to give me her bone marrow results? I summed up my courage and picked up the phone. She did want to know why I hadn’t answered her calls for the past five hours. Little did she know I was lamenting about my eye. After I gave her the details of the past few hours, she told me the best news. She was a 100% match!! I could hardly believe it, so she told me good news again. I now had a chance—a chance to fight, so that was what I decided to do. I called the transplant coordinator, and she already knew. She and my sister had already begun setting up appointments for her to be tested to establish if she could donate without any cardiac or undetected medical concerns on her end. So, July turned around, and a glimmer of hope, like the grinch, started to grow inside me.
August 5, 2019
My daughter was also determined to be a 50% match, so I had options. A month ago, I had no options, and then I had three. We chose to go with my sister as I knew a 50% match would not be enough to save me. She was all set to fly out on Thursday to begin her testing Friday. I begin to feel anxious as this reality is becoming very close. We are in a time crunch. Without a transplant before September, I would have a very poor chance of survival. Are you kidding me? Make no bones about it; my doctor was as straightforward as they come. I begin my testing at The University of Kansas Medical Center. I have to step up, this will be on a fast track. Sure, once they zap you with chemo, you must muster your strength to go deeper. My biggest fear plaguing me is another bone marrow biopsy followed by a triple catheter placed in my opposite chest wall from my port. I am not trying to dwell on the mechanics of these procedures and begin to no nose dive into the new language I had to learn. I will soon be admitted for conditioning chemo. It sounds a little hard, but I am up for it. It is a process to test how much chemo my body can handle without killing me. To say I wasn’t scared would be a lie. I have no choice, though. If you have children, you understand this is about them, not me. So, I choose to go on.
I am back in the outpatient infusion room to keep my blood levels acceptable for transplant. It is a room with ten heated recliners separated by a thin curtain. First, the gentleman to the left of me begins snoring. Then the gentleman to my right starts snoring. What the heck is this, a chorus? Then the woman to my right starts talking on the phone (loudly). Then the woman to the right of the first gentleman asks for the remote and starts watching Jerry Springer. Talk about no control. No way to block out all the noises from behind the thin layer of fabric encasing me. Seriously, who designs these stations? Do these people not have a clue that we do not want to hear them snore, have a fight with a family member, and be subjected to reality TV? What lesson am I learning?
August 7, 2019
A storm is rolling in. I love it. The air is cooler, and the wind is moving the tree leaves in a waltz-like dance. Here, now on the porch as it rains. The thunder roars in the distance, but I am safe on my porch. I love this porch as it allows me to be safe from the storm yet feel its arrival. My pessimistic friend Randi reminded me that this is a message to slow down. That I am responsible for the outcome. My optimistic friend Angel tells me to let this be a learning opportunity and to stay the course I am on.
I thought I was slowing down. After all, I had just quit my job. I was about to embark on something new, which I thought would slow me down. Was it not enough of a change? I always said I would write a book if I had more time. I would tell the story longing to get out of me. And yet, I can’t. Writing comes to me at times when I am not ready. I formulate great starts, paragraphs, and chapters in my head, but it remains locked up tight. Do we all do this? Do we hold back out of fear? Do we not accept challenges until our hands are forced? Is my story not ready to be told?
Did I tell you it is a great rain today? I am listening to the rain drops as they are caught on the leaves. The air is so much cooler and sweeter than it was 30 minutes ago. It called me to come sit, watch, and listen to its rhythm. It reminds me of something. Something distant but familiar. My dog is by my side, lifting his head when something new passes in the air that I cannot see. He remains calm as if all this is natural and intended. Now lightening has been added to the equation. The thunder roars louder until it becomes deafening, and I can no longer hear the cars go by but see just a glimmer of their tail lights. I could almost fall asleep with nature’s lullaby. It is so amazing to be surrounded by the storm, yet I am not afraid. I love the occasional drop of rain that penetrates the screen and caresses my arm as I keep the window open. I do not want to block out the sounds or smells of this storm. Hmm, this storm. It kind of brings me back to the present.
August 9, 2019
I am one step closer. Preparing for transplant both mentally, physically, and well, spiritually too. The tests are relentless, but you just check them off one by one. You try to tuck those fears a bit deeper now. Be brave, be present, just see it as a to-do list. Try not to let your thoughts wander too deep. I have a nagging fear that this leukemia has entered my brain as the headaches continue to grip my skull. No matter. You just tell yourself to deal with the cards you were handed.
My sister Linda is here but in a different building. She, too, is being invaded, poked, and prodded; we are in this mess together. I can never thank her enough for this life-saving gift. Not just her cells, but her courage and selfless act to save me. Does anyone truly understand she is my only hope? I get it loud and clear. “Soldier on,” my sister Patty would say, just put on your big girl panties and deal with it.
Today I was also awoken with my right eye aching. Yesterday I was told to discontinue the eye drops. The fear hits me like a giant wave. I may actually lose my eyesight. You cannot imagine how scary this feeling is. I reinstitute the eye drops. I don’t care what they say; I need relief. The lights are beginning to hurt me as I attempt to start the morning coffee. I control my panic as I tell myself this time, you have the medicine, and it won’t get as bad as the last time. I have to shut out the image of how bad it can be.
My eye keeps watering, and I wish this would wash it all away, but it does not. My sister brings me a cool compress, which seems like some relief—the milky medicine coats my iris. Please hurry. I don’t want the pain to intensify. Linda knows my need for distraction, and she joins me on the bed as we do cancer yoga. Is this a thing? We think so as we make up a game to distract some of the pain. She challenges me to try poses as she is wise to give me a goal to work toward and to push myself like I used to. We laugh and fall over, but it buys me the time for the medicine to kick in. Where would I be right now without my big sister? It has subsided for now, and we continue the course.
Today is also bone marrow number four (for those of us who count). I dread it, I loathe these. The thought of the pain for the next four days can set the fear into motion. This time, I will be sedated, but still, the memories of the previous ones chase me until I am knocked out. There has to be a better way. Some day someone will find a way without all this torture. I pray this day will come soon as I know I am probably never done with these tortuous procedures. I wonder what the people who do them think? Do they know our dread and helplessness? Why can’t someone think of a better way to find the marrow…
August 18, 2019
The last bone marrow biopsy was terrible, but I now move lumbar punctures to the worst category of torture. For five days, I had spinal pressure headaches that left me mostly bedridden or severe headaches that made me wish for a bone marrow biopsy. Yes, the words did come out of my mouth. I clearly do not remember the first lumbar puncture in the emergency room, or I would not have consented to a second. I now await the dreaded conditioning chemo that begins in two days. I am dreading this strongest chemo I will face. I am dreading the whole process, really. First, they will put the triple catheter in my chest tomorrow followed by anti-seizure medications and chemo. Take your pick; they all suck. Knowing the next month will wipe out my entire immune system and leave me fighting to survive is hard to wrap your conscious mind around. You really have no choice. You will die if you don’t do this, and you still might die trying. Yes, it is hard to imagine, but this is what we must face or at least attempt to face bravely. Choices, nope, you just do what they say. I only wish I did not have to.