My Disease

    I have always lived a very adventurous life. I moved around a lot as a child. I bounced around between Czech Republic and the United States, living a very multicultural, exciting, and enriching existence. I always had big dreams of becoming an actress, and lived parts of my young adult life in New York City and Los Angeles. I always felt unstoppable. Any obstacle that came my way, I never failed to find a way to overcome it. Whether it be financially, physically, or mentally, there was absolutely nothing that could come in between me and what I wanted. In July of 2016, however, things would take a drastic turn. For about 3-4 months at that time, I began to suffer from strange symptoms, and as a chronic “web-md” self diagnosing hypochrondiac, I decided to put everything into the back of my mind and just enjoy my summer of travels. I went to Czech Republic to visit family, and regardless of the increasing amount of bruises all over my body, and my inability to walk up a flight of stairs without huffing and puffing, I decided I’d do as I always did: overcome the obstacles. It was not easy. With each gasp for air from doing the simplest of tasks, and with each horrendous bruise, it began to dawn on me that something was not right. This was not a mere case of hypochondria. I finally convinced myself that when I returned from my vacation, I would go ahead and see a doctor. I rationalized with myself, saying it would only turn out to be a vitamin or iron deficiency.
    A week after returning from my travels I had blood work done. I expected some bad news, but nothing in the likes of what actually ended up happening. I woke up the following morning with a frantic voicemail from the phlebotomyst. Every one of my major blood levels was critical, and I was told to go to the nearest ER straight away. I panicked, grabbed my things, called my friend, and took a cab from my Upper East Side apartment, down to Lennox Hill Hospital. I wasn’t expecting to stay long, so I simply waved good bye to my dog, hoping to be back in a few hours. Those few hours turned into almost an entire week of excruciating worry and dozens of tests. The hematologists were stumped, and so I lay in a bed, in a tiny little room, wondering when I would see the light of day again. I had never been a hospital patient, and within a matter of one day, I was now a “sick” person. I asked some of the doctors if I was okay, if I was dying. I think what worried me the most is that to each question, their only answer was “we don’t know.” During that time, I not only recieved stressful news, but a ton of blood and platelet transfusions. Each day I would be pumped full of blood products, and the next day, my numbers would crash down again. The word cancer floated around, but still, the doctors’ only certain reply was “we don’t know.”
   Eventually, on the last day, my doctor came in to tell me he was pretty sure I didn’t have cancer, but instead, a very rare bone marrow failure disorder called Aplastic Anemia. Not only that, but I had a very severe form of it, and although I was being discharged, I could not waste any time. I had to go see a specialist at a cancer hospital, and continue to recieve life saving transfusions every other day in order to stay alive. If I neglected to do this, life expectancy did not exceed more than 3-4 months. I thought I had escaped death and danger when I heard that cancer wasn’t the diagnosis. My first night home from the hospital, I decided to type “Aplastic Anemia” into google. I felt like a student looking up their college roommate for the first time. I had never heard of this disease, and it felt so strange to now have it be a part of me and my identity. Reading about it for the first time made my heart sink to the pit of my stomach. I hadn’t escaped death or danger. I was facing an entirely different beast than cancer, and I can’t say it was any better.
   I saw my specialist less than a week later, and began a routine of every other day transfusions. I became a frequent visitor of the hospital. Riding back and forth from the hospital, day in and day out. It felt like a very bad dream, that I was constantly hoping I would wake up from. No such luck. In the end, I found the easiest way of coping was to just emotionally put myself on pause. I shut down, faced each day as if nothing really mattered, and did what I had to do. I was a robot.
   Then came the time to decided which treatment to undergo. This became an entirely new mountain to climb. I couldn’t just rely on transfusions every other day; I had to do something to actually get better. Usually young people with this illness, who have a viable bone marrow donor, go on to have a bone marrow transplant (the only known cure). I did not have this option, considering I did not have any fully related siblings. My doctors told me there was a new experimental treatment being tested on patients at the National Institute of Health. The only problem? It was over 300 miles away in Bethesda, Maryland. This new treatment had remarkable rates of recovery in patients, but unfortunately was not a cure Still, I decided that this would be the best option for me, and a few days later my mother and I packed up our things, and made the 6 hour drive to Maryland. My mother stopped working, got a hotel near the hospital, and I checked into my new home, building 10 of the research hospital. It is the largest research hospital in the entire world, and a remarkable landmark for the discovery of life-saving treatments to cancer, HIV, and more. I felt priveledged, frightful, grateful, and above all else, ready.
    Upon admission into the research facility, I had to sign a mountain of papers explaining the nature of the treatment, it’s risks, and so on and so forth. The side effects were dizzying, but I tried not to think about it too much as I signed my name on the dotted line. I spent about a month in the hospital, and my treatment went relatively smoothly. When you take into account that some patients experience life threatening side effects, I had quite an easy ride throughout the whole thing. Yes, I was weak, sick, and felt pain – but I never ended up in the ICU, and the worst thing I experienced was my liver going into near failure (which ended up increasing the length of my hospital stay).
   A month later, I was discharged. I was still transfusion dependent, but I had just undergone an immunosuppressive treatment that would hopefully in the next 3-6 months, cause my bone marrow to regenerate. The next 6 months were spent in and out of the hospital (nothing new). I waited for a response, and each time my blood test results came back, I would cross my fingers and pray for some sort of glimmer of hope. Finally, at around the 4 month mark, my bone marrow managed to spit out some blood cells. It wasn’t much, and it was nowhere near a normal or healthy level, but it was enough to escape having another transfusion. I celebrated.
   At the 6 month mark, I was deemed to have had a “partial response” to treatment, and was declared in remission. I finally felt like I was on my way back to having a normal life. Unfortunately, a few months after the good news, my blood levels took a downward turn, and I needed to get a blood transfusion after being transfusion free for 4 months. It was devastating. It felt like I was back at square one. I felt like I was caught in an endless loop of hospital visits and bad news. I felt like a prisoner to this disease. Remission was like being on parole, but now I was back behind bars.
    At the one year mark (a week ago), I had a meeting with my doctors at the NIH in Maryland. We sat down to discuss the outcome of this year long treatment. My doctor looked at me sternly, stating something along the lines of, “this has not be an ideal recovery scenario”. These blood levels I had been living with were enough to get me by, but perhaps as a young individual, I’d want to be able to get more out of life. He offered another round of immunosuppressive treatment, but that I could have time to think it over. A bone marrow transplant was off the table. I had no matches. This really stung. I couldn’t believe that there was not a single match in the registry for me. I would never have a cure, I thought to myself. I would only have these temporary bandages.
   So here I am. I have no matches in the registry, and I have no desire or will to go through another round of immunosupressive treatment. I am in a weird state of health limbo, and I guess that is okay. I get up every morning and try to live each day to the fullest. I try not to focus too much on the numbers, or the needles, or the frequent hospital visits. I try to be positive, look on the brightside, and allow myself to feel like shit every now and then (which It think is pretty normal). If I could take away anything from this whole journey, it is just simply patience & gratitude. I think that is what each of us should have, whether we are healthy or sick. It is a shame that it took me getting a super rare blood disorder in order to learn these virtues. It is a shame that I won the bad health lottery (literally one in a million). I could sit here all day feeling sorry for myself, and telling you how all of this is such a shame. I have learned more in this year than I did in my entire life. I have grown closer to my friends and family. I have learned to be more compassionate towards others struggling with illness. Sometimes it is when we are faced with death, that we learn what living really means.
Please consider signing up for the bone marrow registry. By registering, you are not only increasing my odds of finding a match, but also, someone else’s. Thousands of children and adults struggle with bone cancers, and bone marrow failure disorders. Save a life; be the match.
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