Sometimes, when my health is on the improve, I play a little
game. It is a dangerous game. I pretend that all will turn out fine. That at
some point, soon even, life will return to normal. We will rent a wee flat in
Nelson, The Wood perhaps. Our cat will move back in with us. She will cease her
biting ways. The flat will be near the city and we will walk or cycle to work.
Ah, to work. A job. Right. Becoming a contributing
member of society again. Tricky business.
Our possessions are scattered throughout New Zealand.
Various friends and family members are storing boxes filled with our crap; in garages,
closets, chests, under beds, piled high in spare bedrooms. My books, my books
are also scattered. I try to infiltrate the bookshelves of loved ones but
usually, they too, end up in boxes. The books, not the loved ones. Gosh, things
can get morbid mighty fast when grammar is overlooked. I must confess I never expected to open any of those stored boxes. It was all part of the
game.
I left you in March (shit, was it that long ago?!) closely monitoring my fevers, platelets, haemoglobin and bilirubin. I
started two blog entries but circumstances kept changing. My updates were
obsolete before they were published. Like a newspaper. It is
difficult to be witty and current. I’ve found opting for neither is the best
approach. Anyway, there I was, March, obsessing over my bloods. I must
apologise for I wasn’t exactly honest in my March post. Well it wasn’t complete dishonesty,
it was more omission. Avoidance rather than evasion. Like Cameron. Allegedly.
You see, the immunotherapy arrived at the eleventh hour, like a fairy-tale prince. I was a little too dependent on blood donations. Two
bags a day, of both platelets and red cells. My bone marrow wasn’t working. It
was packed full with Hodgkin’s cells. The marrow surrounding the Hodgkin’s cells
becomes fibrotic and cannot produce any blood cells. My liver wasn’t working.
Presumably, it too was packed with Hodgkin’s cells. I would like to thank all
the blood donors out there. They kept me alive.
This new drug arrived and promptly terminated my liver
failure. The bone marrow response was a little slower, but I have maintained a
haemoglobin in the low 90s for at least four weeks now without any
transfusions. Go team! Thrombopoietin (TPO) is the hormone
that stimulates platelet production in the marrow. In a wicked feedback cycle, the liver produces the majority of TPO. The red blood cell
equivalent, Erythropoietin (EPO), is produced by the kidneys. By having liver
failure there was minimal production of TPO, which was fine at the time because
my bone marrow was also failing and would have done fuck all with such stimulus, but once the two began working again it was interesting to watch my haemoglobin
rise whilst my platelets lagged behind. I was reliant on platelet transfusions
for about a week longer than red cells. In Wellington, protocol is to keep
platelets above 20 for patients with fevers. You are not allowed to shave your
legs until your count reaches 50. I am unsure if that is actually documented in
the official SOP. These are the pesky issues I worry about now that the chemo
is out of my system. Did I hear somebody say first world problem?
My consultant informed me he was rather impressed with my blood. I
blushed. This is probably deemed showing off in an anaemic ward. But my cells
had done me proud. I still take it personally when my haematological results
amaze, fucked up, I know, I know. It is the nerd within me. Or the nerd that is
me. Anyway, so impressed was my consultant that during an impromptu meeting he
released us from Wellington. Mike and I were free to live in Nelson on a full
time basis with me returning to Wellington once a fortnight for treatment. We were
shocked. This was completely unexpected. More unexpected than the marrow
failure. We had to take a moment or two to recover. Despite the southerly
cutting through my now functioning marrow, Wellington had grown on me. Stockholm
Syndrome perhaps?
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| Mitre Peak, Milford Sound |
This occurred a few weeks back. Since then I have been a
little distracted trying to cram the rest of my life into four weeks. Christchurch,
Queenstown, Fiordland, Omakau – ok so that one doesn’t feature in Lonely Planet.
I am still cramming. How does a Mid-May overnight tramp in Nelson Lakes sound?
Great, let’s do it. Now. Let’s do it now. Tramping has a different definition
in New Zealand, although both involve a sleeping bag and no
showers. My fevers persist, however monitoring these has been complicated by
menopausal flushes. Fun fact: your temperature does not rise during a hot
flush. It does with a fever. Initially I was pleased; menopause is a process all
women go through, I felt it was my duty as a woman to experience it. After a
month of continual hot flushes I declared it unfair – the first time throughout
my journey I have said such a thing. Still, my glowing red face does provide a
conversation piece with women over forty-five.
It turns out merging back into reality is time consuming,
exhausting, and rather difficult. My procrastinations are interrupted by self-imposed
distractions. Looking for a flat in The Wood is not as romantic as it sounds.
My cat still bites. And a job? Ha! I can’t even commit to a haircut. And I need to. I really need to.
