Tuesday, 1 September 2015, 15.30
All I can remember is that Fedde and I were laughing.
He had proposed in July, just a month shy of our first anniversary. We’d been officially living together for less than three weeks and I was happier than I had ever imagined I could be. We were always laughing about something or other.
I wish I could remember why we were laughing then, but the knock on the door and the events that followed drown out that part of my memory. It had already been a long day since being admitted to the hospital with a high fever, but seeing those four White Coats walk into my private room promised that it was going to be even longer still.
‘We have the results from your test,’ began Dr Schwartz, who came and sat closest to Fedde and I. Dr Schwartz was my kidney doctor. He’d been treating me for lupus nephritis—an autoimmune disease that attacks the kidneys—for five months prior to this and had sent me for a bone marrow aspiration earlier that morning. If there was anything I was grateful for at that moment, it was that I could find solace in having a familiar face in the room.
I was attached to an IV drip and was receiving antibiotics for an infection that got me in here in the first place. We were already confused about being put in a fancy, private room in the oncology ward—‘What is oncology anyway?’ I had asked Fedde when we arrived—so when Dr Schwartz followed his announcement with ‘the results are bad,’ I didn’t quite understand. The possibility of a “bad” result hadn’t once come up…
The doctor sitting next to him, an older bald man who I came to know as Dr Tower, the head of haematology (the department that looks after blood diseases), took over the conversation. ‘First of all, I’m sorry it took us so long to make our way up here, but I had to check 500 sections of your samples’ slides before having a definitive diagnosis.’
There was tension in his voice, tension I couldn’t quite place. I could feel the eight eyes of the White Coats on me while Dr Tower continued.
‘I examined the slides from your bone marrow aspiration this morning and we can see leukaemic cells.’
My brain tried to comprehend the word as he continued: ‘These kinds of cells are aggressive and fast growing. Though the percentage in your marrow is only about 12 percent, it is likely that within weeks it will grow to an official diagnosis of Acute Myeloid Leukaemia.’
Acute? What now?
I was booked to have a bone marrow puncture and aspiration at 9 o’clock earlier that morning.
You probably have never heard these words. Neither had I until Dr Schwartz uttered them to me last Wednesday. I had originally thought it was what Hugh Laurie’s House and other television doctors call the dreaded ‘lumbar puncture’. But that was the one that had to do with spinal fluid. My test today was one where you take fluid from the hip in the lower back through a hollow needle. Not much more appealing if you ask me.
We had arrived at the clinic fifteen minutes early, but even that was early enough to find the lights were off, the door was locked, and there was no attending nurse to be found. When the nurse, who introduced herself as Lisa, finally arrived, we were moved into the outpatient clinic and I was sat down in a big, orange reclining chair. Lisa told me to get comfortable while she signed me in and prepared to insert an IV into my arm.
It wasn’t the first time I’d required an IV drip. Thanks to my lupus nephritis diagnosis, it had been less than three weeks since the last time I’d needed an IV line inserted. I’d had a big, painful cyst on the back of my leg that had led to a staph infection. There hadn’t been a single accessible vein in either of my arms and it took three nurses and lots of painful jabbing to finally insert the IV into my left hand. Needless to say, when Lisa started today’s search I was scared.
To calm my nerves and assist my body in handling the bone marrow puncture, Lisa gave me a light sedative through my newly placed IV line. Dr Schwartz had promised me a painless procedure. He had said that I would likely forget it as soon as it was done and that’s what I was counting on. Likewise, Lisa promised I would drowsy and fall asleep, barely feeling a thing.
By 9.15am I was entering the adjacent procedure room.
I was instructed to lay on my side on the examination table and look towards the wall so that my back would be facing Dr Vanderbilt, a resident haematologist, who would be doing the procedure. I did as I was asked and took a deep breath, trying to keep calm.
Dr Vanderbilt, explained what she was doing step-by-step, the way you’d expect a 1980’s instruction video to teach a doctor how to make their patient feel comfortable. ‘I’m just getting my tools ready,’ she said softly, ‘and then I will give you a lidocaine injection, that’s the local anaesthetic we use to numb the area.’
Much like when a dentist numbs your mouth before inserting a filling, I felt a slight burning sensation trickle across my lower back. When she touched it moments later to find the proper insertion point, I felt nothing. So far so good. What I hadn’t realised was that getting to the bone marrow—that’s the gooey middle part of your bone, by the way—meant literally screwing through my hip bone to get to the centre of it. I learned very quickly that that is something which cannot be frozen by anaesthesia. I had just finished telling both Lisa and Dr Vanderbilt that I wasn’t a screamer and that I had quite a high pain threshold, but within seconds I felt like an utter liar.
Lisa took my hands in hers to try and keep me calm and quiet. I wasn’t aware that I could even make sounds like the ones that were leaving my mouth, nor at the volume with which they were coming out. I didn’t realise that it was actually possible to be screaming in agony, with tears streaming down the side of your temple and into your ear, without being able to do anything to stop yourself.
‘I’m so sorry, I’m really never like this, I swear,’ I sobbed, ‘but this hurts so bad.’
At this point, while Dr Vanderbilt was twisting a screw into my hip bone, I was being given another dose of the sedative. I was still sweating and screaming from the pain. Between reaching the centre of my hip bone and the aspiration of three vials of bone marrow, all I can remember is searing agony and more screams.
Eight seconds later, it was over. Eight seconds in reality, but what felt like eight hours in my head.
Dr Vanderbilt apologized for causing me pain, told me I was brave, and patted my shoulder before she left the room. I knew she was trying to be kind, as opposed to treating me like a little kid in a doctor’s office after getting a flu shot, so I tried to smile and thank her. Lisa let go of my clammy hands and opened the door to let Fedde in. He took Lisa’s place beside me and squeezed my hands tightly. We were trying to have a conversation, but I could feel myself coming in and out of consciousness. The sedative was finally kicking in.
‘I wanted to barge in and make them stop hurting you,’ he said, ‘but I had to bite my tongue and try to read my paper. Are you okay, now?’
That’s the last thing I remember before falling asleep.
‘I need you to know that we have double and triple checked all the slides. It’s definitely your file. There is no mistake.’ Dr Tower took a breath, giving the words a second to sink in. ‘This is a treatable disease, Darya, and we are going to do everything in our power to make you better.’
I took a deep breath and managed to blubber through my sobs: ‘But what does that mean?’
‘Cancer,’ he said simply. ‘Leukaemia is a blood cancer.’
That’s when it sunk in. This wasn’t just lupus anymore.
I had cancer.
I had fucking cancer. AQ