It was May 21st of 2014. Three months before my wedding. I was 26 years old.
“You have Aplastic Anemia” announced the doctor who would later become my oncologist for three years. My family cheered for me in the exam room. I mean, anemia HAD to be better than Leukemia. Right?
Let’s back track, shall we? I went and got a routine physical done in on May 20th. The following night, I was on the couch watching a horror film with my husband Alex and a friend. I got a phone call at about 10pm. It was a woman calling from the lab that receives my clinic’s lab work. She said she had my results and that I needed to rush to the emergency room immediately.
I went hysterical instantly. “What’s wrong with me!? Why won’t you tell me!?” I wailed. She said she didn’t know, but she knew I was in serious danger. My husband got on the phone and yelled at the woman, more so out of fear.
I ran down the stairs of my private house and screamed for my mother in law, Jeanette. My in laws live on the floor beneath me. My mother in law has been an RN for over 40 years. I told the woman over the phone that I was giving her permission to disclose my medical results. I couldn’t comprehend, but she might and maybe could explain what was going on. Her usual, cheery demeanor faded slowly before my eyes and was replaced by a solemn expression. I could tell she understood, but chose to stay mum. All she told me were that mix ups occurred all the time in the lab and that was probably what this was.
I was rushed to the hospital in the middle of the night without being told a thing. My mother in law wrote down some numbers and showed them to the triage center at the ER. The woman behind the counter quickly lifted her head to stare at me. Her eyes widened at the numbers scribbled on this shred of paper that I did not understand and glanced up at me again. Studying my face. I was immediately told to skip the wait and was seen by a doctor on the spot.
The sense of nervous energy and suspense from the staff, my mother in law and my husband was driving me insane. What the fuck was wrong with me? This was bad. Why was I getting a phone call in the middle of the night about my results? Why was the ER allowing me to skip the crowd of people in the waiting area? It was like a secret everyone knew but refused to disclose. I was told my blood counts were dangerously low. That was all. I didn’t comprehend how grave the situation was.
I was given blood transfusions and platelet transfusions on site, as well as everyday I spent during my five day hospital visit. I was shocked. Bewildered. Petrified and anxiety ridden. I was told I would be hospitalized until the doctors had a better idea of what was wrong. I was left to sit in a pool of apprehension until they found out whatever the fuck went defective with my body.
The following day, I met the most sadistic doctor in the world. He wasn’t around me when I was first admitted. I might’ve been a patient he was responsible to check up on while doing his rounds. This was the first time we were being acquainted.
He sat there and sneered at me while he spoke. “Well, you more than likely have Leukemia. That’s the only possible thing it could be. There IS this one other thing it could be. However, you’re better off with Leukemia. That other disease is rare. I’ve only met one guy with it, and I have no idea what happened to him. You have children right? That’s good. You’ll probably have to undergo chemo. You’ll then lose all your hair and the ability to conceive. You can always hide the hair with hats and things of the sort. You’ll also have to get a port implanted into your chest. Yes, it will leave a scar.” For a minute, he paused, as his eyes skimmed over my skin and said “No big deal though. You can tattoo over it.”
How could he know all of this? I hadn’t even gotten the bone marrow biopsy done yet. I didn’t even have the energy to question, protest or even to be angered. I finally surrendered to the sobs that weighed heavily in my chest. Today, I hope that doctor got diarrhea in gridlock traffic.
Finally, came time for the biopsy. I was laid, face down on a hospital bed. The oncologist then created a small hole in my back, penetrating into my pelvis. A hollow needle was then inserted and like a syringe, the liquid part of my bone marrow was collected.
I cringed and bit down. I was numbed, but felt the sensation of digging. Pressure and then the odd twang of discomfort. Similar to what one feels when hitting their funny bone. This fluid would be sent to a lab, and would give the doctors the information they needed to come up with a diagnosis.
Aplastic anemia, sometimes known as bone marrow failure is rare. This illness affects 0.7 to 4.1 out of every one million people each year, according to a report in the American Journal of Hematology.
It shuts down your bone marrow. It stops producing blood cells. My diagnosis was idiopathic, meaning the cause was unknown. The disease ate away at my hemoglobin cells, which are responsible for carrying oxygen to the blood. My platelets, the cells responsible for coagulating the blood. Finally, my white blood cells, which ward off infections, viruses or bacteria.
The symptoms were there. I felt fatigued all the time. I couldn’t walk down the block without heaving and feeling a jolting, lingering ache, radiating through my anatomy. A pain I’d never even felt, even during my most intense workout. My muscles were searing. I blamed it on being overweight.
Huge maroon and indigo splotches covered my skin. Shameful stains I couldn’t scrub off. Bruising I could not explain, I didn’t recall hurting myself. I woke up with blood in my nose. I blamed it on the air being dry.
My gums would bleed constantly when I brushed my teeth, or sometimes for no reason at all. The blood became a jelly like substance and would form by my molars. I blamed it on needing to see a dentist. The doctors and nurses asked me astonishingly “Didn’t you feel like anything was wrong?” I did. I just found a way to rationalize it all.
After doing my own research and speaking in depth to my doctors, I began to realize there was no guarantee I would survive this. That dickwad of a doctor was right. I WAS better off with Leukemia. Remember that guy he said had this “rare thing” and he had NO idea what happened to him? That guys had aplastic anemia. I had that “rare thing”
Leukemia was much more common. There were a variety of treatments. It’s been studied extensively. No one knows what aplastic anemia is. It’s too rare to research to the best capacity. No one even knows where it comes from and if there is a cure, it’s still lying around undiscovered.
I wasn’t given any reassurance that I would persevere. I was a guinea pig. An experiment with material doctors had never witnessed before. They didn’t admit it, but they were stoked to be treating someone with a disease they’d probably never come across again. “YOU have aplastic anemia!? Wow!” This disease, that was costing me my life, was intriguing to them. It reminded me of a season 1 Grey’s anatomy episode.
I was sent home after my hospital visit. I was to be contacted when my results came in. My white blood count was so low, I was advised to stay home because catching a mere cold could kill me. I was told to wear a mask if I had to be around people. I couldn’t eat foods that put me at risk for contamination. I was told not to shave because nicking myself could put me in danger because of the lack of platelets.
I saw my oncologist twice a week. Received blood transfusions several times a week. My veins were thin and had the tendency to wiggle. They weren’t very visible. I was not what phlebotomist would call “an easy stick”. They poked and prodded at the same, most accessible veins. This happened 2-3 times a week. My arms were patterned navy and crimson. Hurting to the touch and the lack of platelets meant those bruises wouldn’t be fading anytime soon.
In February of 2014, I contacted early intervention to have my son Ethan evaluated. He was two years old. He wasn’t speaking. Made no eye contact. Didn’t respond to his name. He was set to be evaluated by a psychologist my first day back home from the hospital. This would determine if there was a diagnosis and if he would qualify for any therapeutic/developmental services.
She observed him for no more than three minutes before apathetically declaring “He’s severely autistic”. “What!?” I exclaimed. I gazed at my son loving and sadly as he played with his beloved toy cars. I then brought my attention to the doctor. Scrutinized her. Studied her, while simultaneously narrowing my eyes. Down to her violet colored “Can I speak to the manager?” hair cut. No matter how edgy the look intends to be, it always looks like a beaver’s ass.
I thought to myself, How much she could she know about Ethan when she spent less that three minutes with him? I wouldn’t want to give a stranger the light of day if I were Ethan too.
As Alex walked her downstairs to say goodbye, I quietly locked myself in the bathroom. My breath began to quicken. The oxygen felt like it was leaving the room. My heart palpitating. I kneeled on the bathroom floor and gripped the sink until my knuckles were bloodless. I wanted to scream in agony. I knew nothing of autism. I didn’t run in my family, nor in my husbands. My son was doomed, I thought to myself. He would never talk. Never have the the capability of taking care of himself as an adult. He would be bullied for the rest of his life and I wouldn’t be there to protect him. I wouldn’t be around in moments where he needed love, support, encouragement, protection. I was sick. No one knew anyone who had this disease. There was no one to cling for for hope and advice. I didn’t care about the wedding anymore. From what I was hearing, I might not be alive to make it down the aisle.
I sat on that cold, tiled floor. The only thing I could feel were my tingling knuckles. I wanted to die. I looked around in the bathroom for ways to hurt myself. I had pills. I contemplated taking a handful. Anything to stop the most excruciating pain I’d ever experienced in my life. I have a mood disorder and took medication, but that was no weapon against this sense of doom and devastation that took up all the room in my chest.
What was there to live for? According to doctors, there was no guarantee treatment would work. I had no match for a bone marrow donor. I was living off of blood transfusions. I didn’t want to live in suspense, knowing death was creeping over my shoulder and that it had the ability to envelop me in its darkness at any time.
I called my sister and sobbed. Told her every detail. All that I was feeling. I had nothing to live for. Now, if you’ve met my sister, she’s the mega bitch. In the BEST way. An exterior as cold as ice, she’s the one you want by your side when shit hits the fan. That day, she was MY sister.
She told me Ethan would grow up to be fine. That I would walk down that aisle. That I was young and strong. I would fight this and survive. Now, there was no guarantee that anything she said was true. That conversation probably saved my life.
My husband found me in the bathroom. He picked my crumpled body off from the floor. He held me. Told me “That doctor didn’t know what the hell she was talking about!” He reminded me of the things Ethan was already capable of doing, taking the focus off of what he wasn’t doing. “He’s smarter than that doctor knew. We know better because we are around him all the time. He’s gonna be okay and you and I ARE going to get married. We WILL walk down that aisle. You will beat this thing. I love you and I know this in my heart.” He held me for as long as I needed to be held. Held me as I wept and soaked his shirt. His confidence gave my spirit the boost it needed.
I got up from that bathroom floor with new found determination. Now what? What are the options? For us both? All of them? What kind of therapy and services is he going to qualify for? I tucked away my pain away like a document in a file cabinet deep in my brain. The only thing to do was to get him the help he needed. To get the treatment I needed. The only option was to fight like hell. For my son. For myself.
To be continued…