April 26th I had to put my “schedule” and fears
aside because it was Alex’s birthday. I made prawn cocktail and steaks. We
finished with cake dipped in chocolate fondue and a bottle of champagne. We
watched a dumb movie called The Edge with Anthony Hopkins and Alec Baldwin. It
was a nice evening. For a change we didn’t talk about blood diseases at all. At
1am, Alex fell asleep as soon as his head hit the pillow. I lay awake. I did
not want to take a sleeping pill so I tried other tactics. I kept my eyes open
and told myself it was alright to stay awake, hoping this reverse psychology would
knock me out. I tried feeling all my
muscles one at a time and imagining them so heavy I couldn’t lift them. Finally
I told myself to just appreciate that I was still doing well. In December I
gave myself a week to live. I had seen Christmas and Easter. I had celebrated
Charlotte, Abby and Alex’s birthdays. My birthday was in one week. I knew I was
going to make it that far.
On April 27th
I had a “pre-chemo” check with the Auckland hospital registrar. He took my
height and weight and did a physical exam to see if anything hurt. He said
people who responded to the chemo did “very, very well” with the stem cell
transplant. The whole idea he said, was to “buy more time” and that in recent
years they had doubled the amount of time patients were living, compared to
their previously expected mortality.
“If you had got
this (disease) ten years ago…” he started but didn’t finish that thought. He
reiterated Dr Comfort’s message that there are many good drugs coming and the
idea was to keep me in remission long enough to benefit. I wondered how long
that would have to be and what my personal timeline was compared to the
timeline for the new drugs being trialled.
My 52nd
birthday was on May 3rd. I woke up from a good sleep. In the kitchen
there was a decorated chocolate cake from Alex. I got phone calls and texts
from family and friends. I celebrated by getting a blood test. The technician
asked me my date of birth as a form of identification then when she realised it
was the same day, she gave me a sympathetic look.
“It’s your
birthday and you’re here? I hope you’re doing something fun this
afternoon.”
I was. I was going to pick Charlotte up from the airport.
She was coming home for two nights. It was so wonderful to hug her again.
After the brief respite, it was
back to my schedule. I could already check off two blood tests and the
pre-chemo check. On May 7th I was back at Auckland hospital for a
heavy dose of the chemo drug cyclophosphamide which would help “mobilise” my
stem cells to move into my blood stream. This was in preparation for the stem
cell collection in about ten days’ time.
I was currently on 500mg of cyclophosphamide a week. On this day I would
get 3450mg in one go. When I arrived in the haematology day stay, the nurse
asked me if I needed to “soak”. I did not know what this meant. She took my
shoulder shrugging for a “no” and asked me to sit on a bed. She began inserting
a needle into a vein on the inside of my left wrist. But after trying to push
it in, giving me excruciating pain, she decided it was not going to go in the
vein far enough and pulled it out. She pointed to a row of metal sinks. I sat
by one and watched as it was filled with hot water. I was to put both arms up
to my elbows in the water and stay there for a few minutes. The hot water would
cause the veins on my hands to pop out. This was the “soaking” she referred to
earlier. Back on the bed, the IV was successfully introduced into the back of
my right hand. I was initially given an IV bag of mesna for two hours. (Mesna
reduces the side effects of cyclophosphamide).
The liquid felt ice cold and I began to shiver. Alex wrapped me in a
blanket and the nurse brought me a hot flannel to lie on my hand. I was
apprehensive when the IV bag of cyclophosphamide was hung next. I wondered if
it would make me sick but I didn’t feel nauseous at all. I ate a banana, yogurt
and sandwich and worked on my laptop while the chemo drug dripped into my body.
It only took an hour, but added to the pre-chemo and post-chemo IV fluids, the
whole exercise kept us in the hospital for six hours.
Before we left we were given lessons on injecting the GCSF
which would have to start in five days’ time. GCSF stood for granulocyte colony-stimulating factor.
The hormone stimulates the bone marrow to produce stem cells and release them
into the blood. Between the cyclophosphamide and the GCSF I would hopefully
have plenty of stem cells swimming around in my blood to collect.
The nurse brought out a tan rubber ball the size of a
grapefruit, and a syringe. I obviously looked horrified because the nurse said:
“Diabetic
patients inject themselves all the time.” (Translation: You are being a
complete coward)
But she couldn’t
shame me into thinking I could do it myself. Still I played along. I tried
stabbing the ball with the practice needle. The needle went in easily but
snagged on the rubber when I pulled it out. My skin crawled with imagined pain.
Sensing my distaste, the nurse said:
“It won’t get
stuck like that in real life.”
Great! Then why were we practicing on a rubber ball?
Shouldn’t we have a side of beef or something? I shook my head. Alex flexed and
volunteered. He took the rubber ball from me and stabbed it four times. Then he
said “I got it”. I clapped. He got the job. He was my hero.
Our first GCSF
injection day was the following Saturday. That morning Alex told me he had a
dream that it was Saturday evening and we realised we had forgotten to give the
first injection. So we both jumped out of bed and into action. He took a
pre-filled syringe out of the fridge to warm for half an hour and I made tea.
We sat there over breakfast, trying to have a normal conversation while the
clock ticked the seconds away. I don’t know who was dreading it more. When the
half hour was up we returned to the bedroom. I lay on the bed. Alex sat next to
me. He carefully wiped my stomach with an alcohol pad, going around in circles
from the middle out, just like the nurse instructed. His hands were shaking
badly as he undid the GCSF packaging. The needle had to be attached to the top
of the pre-filled syringe, but when he took the plastic packaging apart, the
exposed needle fell on to the bed. We looked at each other.
“Oh shit.” (In
chorus)
I opened another
alcohol pad and carefully wiped the needle off. Then he inserted the needle
into the drug vial and we were back in business. I pinched a handful of stomach
fat, lay back and shut my eyes. I didn’t want to make him more nervous. There
was only the slightest sting when the needle went in. When he removed it there
was only a dot of blood at the site. I told him what a great job he did. I
meant it sincerely. It hurt less than many of the velcade injections I had
received and much less than that torturer at the blood lab. He did such a great
job, I was so proud of him. It was a relief. We would both be more confident
the next day after getting one under our belts. Alex philosophised:
“Just another
experience in our lives”.
“Who’d have ever
guessed we’d be doing this one day,” I agreed. It was totally surreal.
The next morning
I had a little anxiety that it went so well the first day it couldn’t possibly
go so well again. But Alex delivered another successful shot. I thanked him and
hugged him and was so glad to have someone to share a moment of this burden
with.
Meanwhile I was
eating like I was on death row – not surprisingly. I had chocolate every day
and wine every night. I was not exercising except for a weekend walk with Alex
and I could feel the pounds piling on. I wasn’t the least bit worried though. I
considered this couch potato phase well-deserved. My typical day was spent
either looking up haematology vocabulary on the internet or watching TV. The
two activities took place only metres from each other. I didn’t get addicted to
any day time shows but I couldn’t get enough of any show with a cancer theme.
There were plenty to choose from it turned out. The main character from
Breaking Bad had lung cancer. I was sad when he coughed up blood and I cheered
when his doctor’s visits went well. I felt like I had an ally in the room.
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