Diagnosis … now what?
I was told that we would have to begin chemotherapy almost immediately. However, since I was dealing with a staphylococcus infected cyst (ew!), it was important that I be treated with antibiotics to bring my immune system back to optimal function. The course of antibiotics would be administered intravenously (via a needle into my veins) and I would need to stay in hospital. So there I was, leukaemic cells brewing inside my bone marrow, fighting off an infection … and I’d only packed a bag for a couple of days! To top it all off, I was an ocean away from my family and would have to break the news to them via FaceTime.
Accepting my diagnosis was not easy, but I dug deep and found the strength to accept the fight that lay ahead of me. Having to break the news to my family was difficult. I have such a vivid memory of calling my mom at work. The last thing she was expecting was for her youngest child to call from the other side of the Atlantic with the kind of news I had to share, so getting her to go sit in her office, away from the hustle of the workplace, was a bit difficult. I remember asking her to sit down and pay attention and started to calmly tell her the news I had just received from my doctors.
I’m very lucky that she was able to drop everything and be on quite literally the next possible flight to come be with me for my first course of chemotherapy. Her arrival was such a relief, I was so grateful to have my mommy by my side.
Getting my central venous catheter
Going for my central venous catheter (CVC) was an experience, to say the least. My roommate warned me that the waiting room was cold, so I made sure to bring an extra blanket with me, just in case. I was given a small package with a few plastic things in it (including what looked like a very long and slim tube) and waited to be picked up by hospital transportation to be taken to have it inserted.
Transportation picked me up and took me to the angio surgery room. They rolled me into a white waiting room, separate from where family members and significant others were allowed to sit and wait. It was indeed cold, so I was happy that I had the extra layer. Once ready for me, a doctor’s assistant slid open a door which exposed a room lit with blue UV lights. I saw a few big screens and machines, and a table in the middle of the room. This was definitely an operating room and I instantly felt nervous.
Accepting my diagnosis was not easy, but I dug deep and found the strength to accept the fight that lay ahead of me.
After asking for my name and date of birth, I was moved from my mobile bed to the table in the centre of the room and instructed to lay still. The doctor’s assistant applied a coloured antibacterial agent and informed me that the doctor would be in shortly to begin the procedure. I was covered with a blue surgical sheet that had a hole in it – the hole was placed over the area that had been cleaned by the assistant. The doctor came in and began to search for a vein in my neck/chest area with an ultrasound probe. She reassured me I didn’t need be afraid and that, although it may look and feel like it’s going to be a surgery, it would actually be a very quick procedure that would be over in about 10-minutes.
Once she located a big enough vein – in my neck rather than in my chest, which I wasn’t terribly happy about - she poked me with a needle, giving me a local anaesthetic. She talked me through the procedure of insertion, using the ultrasound probe as a guide.
As she had promised, it didn’t take more than 10-minutes for the whole thing to be over. When it was done, the assistant pulled a giant X-ray machine over me to take a picture, ensuring that the CVC was placed correctly. Then they wished me luck with my treatment and put me back in the waiting room to wait for transportation back to the oncology ward.
Are chemo side effects real, though?
The days coming up to the start of my intensive chemotherapy seemed to blur together as I was bombarded with a lot of information and instructions. We had had a conversation with another patient who was in treatment for AML as well, but was receiving his second dose at the time of my first. He had shared his experience with the first dosage, which included an allergic reaction, but we were told that every patient experiences the medication and its side effects in different ways.
One of the pre-chemo conversations I remember the most clearly was the conversation about hair loss. One of the nurses sat with me to explain the different and most common side effects. When asked if I had any questions, I immediately asked about my hair. It was starting to become more and more real to me that I would be going through chemo, and I had accepted that I would encounter fatigue and nausea. But I just couldn’t accept that I would be losing my hair. They said hair loss doesn’t happen until about two weeks after the start of treatment, so I decided to keep my hair as long as it was, for as long as I could.
Chemo round 1: Universe, can you hear me?
I vividly remember the night before my first dose of chemotherapy, which was to be administered intravenously, around the clock for seven days. My mom was at the hospital with me until I went to bed and we were both very nervous. We had a lovely conversation with my nurse as I was feeling very anxious. He shared with me that in his experience, it’s those moments of fear and unknown before treatment begins where most people (re)connect with their spirituality.
I grew up in a family of scientists, and religion was not a prominent thing in our household. My parents believed in “a God”, but it was never clear to me which one. So I didn’t really have a spiritual side of my life to (re)connect with. Through psychotherapy in my late teens to early twenties, my therapist spoke to me a lot about the power and energies of the Universe and shared some of her own beliefs to help me find a balance of my own that made sense. That night, I turned to the Universe and I prayed. A prayer of gratitude and of hope that the Universe would help me find a way to get through what I was going through. This became a nightly ritual, along with singing made up songs to my body, asking all my cells to work hard and help me through.
The actual process of chemo was the standard combination of 7-day, round the clock drip of Cytarabine (ara-C), and 3 3-hour doses of idarubicin on days 1 through 3. During that week of 24/7 drip, I wasn’t allowed to leave the ward and, as the side effects took a few days to kick in, I felt like I was going stir crazy.
We had a lovely celebration with my mom, sister, and fiance when my first round of chemo drip was finally over; We headed down to the hospital cafeteria and I (finally, after a week of cravings) got to have an ice cream!