I’ve told this story more times than I can count, and I’m certain that every time I tell it, it comes out differently, with new insight and memories from my recovery. And yet I know that every time I tell it the same warrior in me appears.
A Family affair
The months before my diagnosis were divine. July 2015 was beautiful. My boyfriend and I had been together for a year. We began the month with my extended family on the Greek island of Crete to celebrate the wedding of one of my cousins. We returned home to Amsterdam with love in our hearts and my sister and two teenage cousins in tow. I spent three weeks being a tourist in my own city with the most important people in my life. And at the end of the month my boyfriend proposed. I responded with an ecstatic “yes!”. In August, my sister and cousins headed back to their respective homes, and my fiancé and I started this new chapter of our lives together. We officially moved in together and chose the date of our upcoming nuptials.
Things then started to go downhill when a cyst I had caused a Staph infection (Staphylococcus is a type of bacteria that can cause many types of infection) put me in the hospital for a couple of days. After being released from the hospital, I made a follow up appointment with blood tests for the end of the month. Nothing could have prepared us for what was to come.
When a routine test leads to hospital administration
What started as a routine test turned into a bone marrow puncture to determine the cause of some abnormal blood results. This was the beginning of the most difficult adventure of my life.
On September 1st I emailed my professors to let them know I would miss my first class of the semester due to a doctor’s appointment. Routine blood tests had become normal for me after a lupus diagnosis in 2013 so I just saw it as an extension of that. The lumbar puncture was horrible. Local anesthetic did nothing to numb the area of my lower back where the needle was inserted. I writhed and let out howls of pain, just minutes after promising the nurse and doctor that I was not a screamer. I asked for a sedative while my fiancé sat just outside the door, newspaper in hand, waiting for it to be over. A few minutes after the test was over, he was allowed back in the room and I laid there on the testing table, in and out of consciousness as the sedative kicked in. The pain in my back after that test was excruciating.
Regardless, after about 15 minutes of rest, they managed to get me up and out of the day ward and on the bus home. When we got back, I told my fiancé I wasn’t feeling any better. Low and behold, after holding a thermometer under my tongue for a minute or so, it showed that my temperature was rising towards a fever.
Throughout this, I had also been dealing with a second cyst and assumed that this one, too, had become infected based on its size, the swelling around it, and the pain it was causing me. I called my doctor to ask what they recommended. The nurse who answered the line spoke with my doctor and they said I should get myself back to the hospital. They advised me to pack a bag as they were uncertain as to how long I would be staying this time. Thinking this was just another staph infection, I packed for a couple of days and we called a taxi to get us back to the hospital. Being admitted this way is a bit complicated, they send you to the emergency room where you are assessed by the doctor on call and, after preliminary tests, are admitted and sent to your respective ward.
My time in the emergency room was quite interesting. I lay on the emergency bed with my fiancé sat next to me and we spent a lot of time just waiting. Funnily enough, it was the same staff that had taken me in just a few weeks prior for my first infection. I had a slight idea of what to expect – some blood tests, an IV drip, and a visit to the infectious diseases ward. But this wait was not quite that simple. For whatever reason, the doctor on call kept coming around to tell me that it would just be a little bit longer, and that the haematologist was looking at my bloods. Is it embarrassing to share that at this point, I didn’t even know what a haematologist was?
Rolling into the Onco ward
Fast forward a few hours and finally someone came to take me to the other ward. I remember thinking I was heading back to the infectious diseases ward and hoping I wouldn’t be stuck with the heavy breather who couldn’t sleep through the night last time I was there. We arrived on the same floor as my last admission to hospital, but turned left instead of right. As they were rolling me through and into the ward, I noticed that the notices on the doors all mentioned oncology. At that point I didn’t know what oncology was either! I was put into a private room with a private bathroom. I couldn’t help but laugh wondering how contagious was I? We tried not to think anything of it or to consult our good friend Dr. Google. I’ll be home soon, I thought.
It was around 15:30 when the ‘white coats’ walked in. This is how I refer to the four people who entered my room with somber looks on their faces. Among them was the nurse I had met when I arrived on the ward, the nephrologist who was in charge of my lupus, the doctor who had done the bone marrow aspiration earlier that morning, and an older, bald man with a kind face whom I did not recognise.
My nephrologist opened the conversation, letting me know that they had the results from the bone marrow aspiration and that it was bad. The kind-faced man took over the conversation and began to explain. They had found leukaemic blasts in my bone marrow, about 13%, and we would need to start treatment immediately. Or at least once they had taken care of the staph infection caused by the new cyst.
My fiancé and my first reaction, shocked, was simply to cry. The haematologist went on to explain that they checked and double checked the test results, that it took some time because they needed to identify 500 cells, and that there was no mix up in my file. This was really happening. As we cried, the doctors asked if we needed some time to take in the information and compose ourselves before moving forward. I quickly stopped my crying, wiped my tears, and firmly asked how we were going to fix the problem.
In that moment I decided that this was my life and I wouldn’t let something like an early-stage AML diagnosis change that. Together with the doctors, I was determined to take control of my life, of my treatment, and of my healing.
Through the course of my treatment, I relied half on the power of the medicine I was being given and the allogenic stem cell transplant I would receive in December 2015 from my older sister. For the other half, I relied on my ability to think positively, to trust in the universe, to create a healing space through my hospital stays and later at home, and never utter the C word. That last tenet later changed with insight from the hospital social worker who encouraged me to associate the word cancer with the strength and resilience needed to kick the crap out of it, rather than the heart wrenching pain and suffering that is often attached to it.