That same Monday afternoon I had to meet with a
haematologist. It wasn’t Dr Comfort. He was on leave for a few weeks. (How
could he when I needed him?) I will call her Dr Fill-in. Two hospital visits in
one day was depressing. What was more depressing was standing on the scales. I
had gained almost five kilograms in a month. I knew nothing fit me but
sweatpants, but to see 64.9kg in neon lighting was an OMG moment. The doctor
had to reconfigure how much chemo to give me for the next cycle because I was
fatter now. I turned red-faced and
feebly acknowledged how much weight I had gained. Dr Fillin said it was fine
because I wouldn’t be able to eat my whole first week in hospital. That was
depressing. Now I was going to go home and eat even more. Then I sheepishly
told her I only collected 3.75 million stem cells. She said it was fine, that
nobody got a second transplant anyway. They would give me all of the cells
back. None would be saved.
I was put on
another four week cycle of velcade, dexamethasone and cyclophosphamide.
Pre-admission tests for the hospital would include heart and liver function and
a psychiatric evaluation. Dr Fillin said I would be a high priority on the
transplant list because of my high risk disease. She mentioned me being high
risk a couple of times and it brought me right back to where I was months ago.
My blood tests were good because I had been medicated for five months. But in
reality the cancer was still simmering away waiting to come to the boil again.
She had just reminded me how sick I was, how sick, how sick. All of the things
we were doing were just delaying tactics.
It was like my appeal had been denied. I was on death row again.
At home I rushed
to my computer to read again the story of the 54-year-old woman who beat her
plasma cell leukaemia. Fingers crossed. It could happen. It could happen. I
picked Charlotte up from the bus stop and told her that the doctor thought it
was “fine” that I only collected 3.75 million cells because no one ever got a
second transplant.
“Is that because
they’re cured?” she asked hopefully.
“It’s because
they die.” I said, then immediately regretted it. Sarcasm isn’t always the way
to go in these circumstances.
The next morning
I woke up about 5am. My old friend anxiety was back again. The “high risk”
comment and the urgency in getting my transplant made me realise again what a
tightrope I was walking on. In the shower I stood under the hot water for ten
minutes. It was comforting, isolating. I found that I was constantly trying to
find these pockets, these little worlds that I could escape to. As the water
poured over my head I thought about the patients I had seen in hospital. They
were bald, sick, attached to IVs, polite and cheerful on the outside but dying
within. I read about plasma cell leukaemia again, trying to gain a glimmer of
hope where there was very little. I was glad my children were in their twenties
and on their way in life. Maybe I had done my job here on earth.
That sort of
thinking called for a Cadburys family-sized bar of coconut rough chocolate. So
what if I’d been wearing elasticated trousers for a week now. What did it
matter? I made a supermarket list. Top priority was the ingredients for Oreo-stuffed
chocolate chip cookies. I put a band aid across the wound in my neck instead of
one of the larger white bandages the hospital gave me. It made the incision
look even less serious.
A week later, the
last week in May, I had very little hair and had gained another kilo. I now
weighed 65.9kg (145 lbs). The hair loss was from the high dose chemo I had on
May 7th. I wanted to blame the weight gain on the drugs as well, but
I could only blame myself and that damn delicious Cadburys chocolate. The bald
head and round stomach I now sported were definitely reminiscent of Buddha.
I skyped my
sister Holly. My mother was also there. My mother said she was surprised to see
that I looked so well. I wondered what picture she had formed in her brain of
her youngest daughter. It was probably something close to a concentration camp
inmate. I told them all about the stem cell collection with the expertise of
hindsight. I was calm and cheerful and said it was great to have a day off from
anything medical. I spoke too soon. When I finished skyping the phone rang. My
haemoglobin was only 89 (normal was about 115) and the nurse wanted to know if
I needed a transfusion. I did not want to go into the hospital again. I asked
when I would “have to” come in. She said I would know when it was time. My
heart would pump hard, my breath would be short and I wouldn’t be able to
function normally. She said if I was unwell over the weekend to call the
hospital. I did not plan to feel unwell over the weekend. I didn’t call.
My first
pre-admission test in anticipation of my stem cell transplant, which was now
scheduled for July, took place the first week in June at North Shore hospital.
It was a heart function test to see if the poor muscle could stand up to what
we were about to put it through. The woman who ran the test was nice, and talk
about multi-tasking! As I lay on my side, she lifted and dropped my naked
breasts and moved a lubricated wand between them all while watching the results
on a machine and making small talk.
“How did your
family take the news?” (lift, slop, drop)
I told her but I
didn’t want to. I didn’t know her and it was strange to give her the intimate
details of how my family was dealing with my demise
“They’ve been
really good. My husband is very supportive and I’m lucky my daughters are old
enough to understand and be supportive as well.”
“That’s great.
How old are they?”
Ugh. It was phony to think she would give me a
second thought when she finished manipulating my breasts. It was just small
talk. She would ask the next patient the same question, and the next. I would
have much preferred if she had talked about the weather.
“Twenty-two and
twenty-four. What can you see on the machine?” I wanted the subject changed.
“Your heart is
doing what it is supposed to.” (lift, slop, drop)
I passed the
test, got dressed and thanked her. Two days later I was back at North Shore
hospital for a lung function test. I was put in a strange clear glass booth, called
a plethysmograph or body box. The booth has clear plexi-glass all around. It
reminded me of the type that Nazi war criminals sat in during their trials so
no one in the courtroom could get a shot at them. You sit in the booth with the
door closed and pant into a mouthpiece. A machine measures the air in your
lungs, gauging your lung capacity. Through a microphone the technician told me
how to breathe. One of the tests was breathing in carbon dioxide to see how my
lungs would cope. It seemed a little extreme. She was also nice and tried to
make small talk but she failed. She put her foot right in it.
“Your lungs are
functioning fine…at least that’s something that’s working well.”
Her face showed she immediately regretted the comment.
“I meant that with
the utmost respect”.
I gave a nod and a half-smile. Why don’t they all just talk
about the weather?
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