Diagnosis

Safely back in Aotearoa, I retrieved the crinkled slip of paper requesting a blood test that had been stuffed in my diary since September. Four days after I returned I took it into my local blood lab.

As soon as my blood was taken I heaved a sigh of relief. After months of symptoms I could finally relax because I was doing something proactive about my health. I had no idea what was wrong with me so I couldn’t worry excessively. Whatever it was, my doctor would fix it. I would get the results in a few days and take whatever antibiotics the doctor prescribed. I was at peace. The next morning the phone rang. It was the nurse from my doctor’s office. She said they had the results of the blood test. She didn’t give me any details except to say:

“There’s nothing to worry about.”

I was a little surprised that she would call me so quickly to say there was nothing wrong, but why would she lie?

      “Okay.” I exhaled.

“The doctor would like to see you this afternoon.”

“Huh?”

      Immediately I wondered what was wrong. She said everything was fine, so why would the doctor need to see me so urgently? It didn’t make sense. What was going on? As if I was given my last hours of freedom before going into battle, I spent the morning overcompensating for the dreaded appointment. I bought my family overpriced stocking stuffers and treated myself to an elegant coffee. At 2pm I picked my 21-year-old daughter Charlotte up from the bus station. She would go to the mall while I went to the doctor’s office. I made pleasant enough conversation with her but inside the fear was building.

My doctor was the same age as me. I had been going to her for years and I trusted her implicitly. At home, I was never very good at communicating, choosing more often to shut myself in a room and make Alex figure out why I was upset from the other side of my closed door. But I had always been able to tell my doctor everything. She took me seriously. As soon as I sat down in the comfy padded chair next to her desk she would give me a reassuring smile and I wouldn’t be afraid to share my most intimate concerns. But this time I sat down and she didn’t turn towards me. She was stiffly folded over her desk eyeing her computer. Her shoulders were slightly hunched and she sat on the edge of her chair as if she were late for an appointment but had one last urgent email to send. Something was very wrong. She finally turned her head towards me and said:

“It’s bad news.”

My first thought was that she was being a little melodramatic. After all, no matter how bad it was, surely it would be something fixable.

“What have your symptoms been?”

I launched into a discourse about my year. I explained that I ran the 8.4km Round the Bays charity run in March but a couple of months later found it hard to walk up hills. I told her about the nose bleeds and the way my heart palpitated after walking up a set of stairs. I gave an account of my time in America including the scary amount of blood I swallowed in Las Vegas. It was like the script for a bad horror movie. She listened quietly and nodded. I finally stopped talking when I realised I hadn’t heard what was wrong with me yet. Asking me about my symptoms had just been a delaying tactic. I looked up at her, searching for a glimmer of lenience, like a puppy that’s just wet the floor.

“It’s leukaemia.”

I thought about the nurse that rang me that morning. I wanted to wring her scrawny neck. Why would she tell me there was nothing to worry about? She should have said:

“The doctor wants to discuss your results with you.” OR

“I don’t know the results, the doctor has them and she wants to see you.”

Maybe she was trying to prevent me from having a car accident because I would be so upset at the news, but she lied. She told me there was nothing to worry about. That was as far from the truth as she could have gotten.

When I tuned back into the doctor she was still talking. She said she had been on the phone all day organising for me to go into North Shore hospital the next morning to see a haematology doctor. I needed another blood test for cross-matching purposes. I would be getting a transfusion as I was very anaemic - my red blood cell count was very low. The business end out of the way, she returned my puppy dog stare.

“I’m sorry.”

I had a little cry. But only a few tears, not a great sob of any sort. Then everything was suddenly at hyper speed. It was if I was standing in the centre of the room with my arms out going around and around like a whirling dervish. The next conversation had the intonation of a child’s rhyme.

“Do you want a cup of tea?”

“No thank you.”

      “Is there someone I should call?”

      “My daughter’s at the mall.”

      “Do you want her to come here?”

      “Yes that would be good.”

      “Do you want to ring her?”

      “No. I’ve decided I will go and meet her.”

      “I won’t charge you for delivering bad news. You can go straight out the door.”

I had it pulled together by the time I was outside. I rang Charlotte who walked over to meet me and the two of us walked up to the local blood lab. I told Charlotte they had to do more tests and that I had to go to the hospital the next day for a transfusion but I didn’t tell her I already knew I had leukaemia. I couldn’t bear to say the word out loud yet. I am someone who has to mull things over for twenty-four hours before I can deal with it. I have always been that way. So I wasn’t ready to share. I needed to absorb the news into my own skin first. I got the blood test done and at the bottom of the slip I saw the words for the first time:

      Probable plasma cell leukemia.

      I hid my wide eyes and large gulps of panic. My doctor had only said “leukaemia” to me. Now it had a name, it had become personal. More than that, it was written in pen which made it real. It wasn’t a mistake. It wasn’t my heart or my lungs, it was a disease. I had a “this can’t be happening” moment but because Charlotte was with me I feigned confidence. When we got home I secretly googled the term. The news was terrible. There was a generic definition which was repeated no matter which site I was on. “A rare and aggressive blood cancer, very resistant to normal methods of treating myeloma and death occurs within eight months”. When I read that, I didn’t yell but I imagined I must have looked like a cartoon character whose eyes were popping way out of their head. I was going to die soon. I never imagined my exhaustion and nosebleeds would lead to this.

      I turned the computer off and took a deep breath. When Alex came home that night I told him that I had to go to the hospital the next day for more tests, but I still couldn’t get the word leukaemia out of my mouth. I still needed time to process the information before I could rationally share it with my family. I sat all evening with a brave face watching a DVD that I used to find hysterical. It was no longer amusing. Charlotte said she would drive me to the hospital. I told Alex not to bother coming because I would probably have to wait around a long time and it would be boring. In fact, I wanted to deal with it myself first.

      The next morning, Charlotte dropped me at the hospital at 9am and I found my way to the haematology day stay. The nurses took me to a private room and sat me on a bed. There I met a good looking, soft-spoken haematologist who was about to become more important to me than anyone in my life. He confirmed that my disease was just as I had read, more resistant to treatment and very rare. It was so rare there had been no clinical trials run on it. I took a little time out at this point to feel completely lost and incredibly sorry for myself. I was trying to mathematically comprehend how this fate had come to me when I had been so healthy all my life. But before I could figure out the riddle, a student doctor came to do a bone marrow biopsy on my hip. She laid me on my side and gave me a plastic tube to put in my mouth so I could self-administer an anaesthetic gas. The reality of my new situation had sunk in. I began to fall apart. I wanted to yell out:

      “STOP!”

I was feeling sick and like a small child who could feel the cotton candy working its way up to her throat, I just wanted to get off the merry-go-round. I started crying. This time it wasn’t the little, sad cry I had in my GP’s office. It was full-on wailing. It was a cry I should have had in the arms of my family the evening before, instead of watching The Wedding Singer for the fifteenth time. But then I was stoic, now I was crying so hard I couldn’t suck in the gas.

      “I haven’t told my family yet,” I blubbered.

      “Oh?” replied a nurse.

She was standing at the end of the bed. Her body language showed she wasn’t being sympathetic. It wasn’t annoyance either. There was simply a methodical tap-tapping of her orange Crocs as she wondered how they were going to do the biopsy on a patient who was suddenly out of control.

      The answer was an intravenous sedative to knock me out. That allowed the procedure to continue and stopped me from crying. When I woke a few hours later Alex was in the room. He had come to see me on his lunch hour. From his smile I could tell no one had delivered the bad news. I wrapped my arms around his neck. In a raspy whisper the waterworks began again as I gave him the diagnosis.

      “It’s bad.  I have leukaemia and I don’t think I’m going to live very long.”

He hugged me back and cried. He never cried. There was something about the strongest person in my life crying that made it more horrible and so, so sad. As the donor’s blood dripped into my IV I thought of my children and how I wasn’t going to see them have careers, get married or have babies. It was the middle of December and I probably wasn’t even going to see another Christmas. I was on a flight that was going to crash. There was no parachute and there was no way off.