Cancer has always been such a
mysterious, clouded word that seemed to call for whispered tones if it were to
be mentioned at all. The very word, cancer,
has a bitter taste. Even in my
own family, it was a big hush-hush that no one spoke of. Considering this, it
was surprisingly encouraging to have my cousin honestly tell me about her experience
with the C word after my asking.
For weeks after losing my hair I’ve had
people glance and look away hurriedly, the girl with no hair only spoken of by small, untrained children and drunk teens at the park. I
loved that. I wished that more people would openly ask, “why is your hair so short?”
or other questions that are often considered 'rude'. It’s so much
better than having people look at me then glance quickly away.
As much as I enjoy
writing ‘fluff’, I was reminded by the interest of my dear friend Nicola that
cancer is something people hear of often but don’t really know that much about
unless we, or a close one, have had it. It’s time to do some science. I’ve
avoided my bulging medical file for a long time. It currently sits in a plastic
drawer on top of a chest of drawers downstairs in ‘the den’, a large
basement-type room that James and I have been staying in (although it’s now
just me and my book). I’m just about to go downstairs and collect it, and
unveil this thing that I have managed to so far avoid.
Okay, here we go. I
have opened it.
Lying on top is a wad
of paperwork from fertility associates. Like previously mentioned, I’m
currently undergoing IVF. It’s two weeks of self-injecting and preparing
syringes, but by now I feel used to doing things that aren’t pleasant. And
plus, it’s nice to be doing something medical that is positive.
After these consent
forms, I reach the pile of bills. We stashed them away in here after reading
them – about $80,000 with insurance ‘still pending’. It’s funny to see charges
for medical mistakes, more charges for pain relief, and then the bills to fix
them all sitting together. I guess you just have to see it all as a little
comedic.
Below these lovely items,
I find copies of my referral from UW medicine to NZ doctors. The reason for the
urgent request reads:
“21 YR OLD FEMALE W/DX
OF ANAPLASTIC OLIGODENDROGLIOMA. MOVING BACK TO NZ TO PURSUE TREATMENTS POST
SURGERY.”
After this I move on
to my ‘Outpatient record: Final Report’. It is written by Dr. Chamberlain, and
begins “at Dr. Dan Silbergeld’s request, I had the pleasure of seeing Bethany
Lowe, her husband, James, her mother, Melanie, and her mothers friend, Guy, in
consultation today in Neuro-Oncology clinic at the University of Washington on
December 12, 2012. Bethany is a 21-year-old, left handed, New Zealand female
who developed blurry vision in her right eye and progressive headaches
prompting MR imaging that demonstrated noncontrast-enhancing tumor in her right
anterior frontal pole. She underwent resective surgery at the University of
Washington on December 4, 2012, and, based on postoperative imaging, had an
image-verified complete resection of a noncontrast enhancing intra-axial tumour.
Histopathology was consistent with anaplastic oligodendroglioma that manifested
polysomy with relative deletion as well as IDH-1 mutation. They present today,
approximately 8 days postoperatively, for consideration of postsurgery therapy.
She is otherwise neurologically intact* and fully functional in activities of
daily living.”
The report then goes
through my family history (null), social history (non-smoker and drug taker,
only social drinker), allergies (null), surgical history (null), review of
bodily systems (all 100%), a physical exam (good), nuerological exam (good). In
the ‘plan’ section, after a whole lot of medical jargon suggesting radiation
therapy followed by PCV chemotherapy treatment, it reads, “A median survival in
such a patient group is 12 to 14 years as compared to 7 years with radiation
therapy only as primary therapy and reserving chemotherapy at time of disease
recurrence.” Wikipedia says 3-5 years – to this, I regret trusting Wikipedia in
the past and choose to disbelieve it.
So there it is. It
then discusses the doctor’s reason for preferring PCV treatment to the newer,
less tested, Temozolmide. Apparently next year there will be a large
international clinical trial of this new drug, which is half the toxicity of
the classic PCV. PCV chemotherapy is the classic ‘one size fits all’ drug that
is used for most high-grade brain tumours. It shows no mercy to all other rapidly growing cells in the
body. Hence, the killing of hair cells and sex cells (premature menopause).
PREOPERATIVE
DIAGNOSIS: Right frontal brain tumor
POSTOPERATIVE
DIAGNOSIS: Right frontal glioma
Wow. I just stumbled
across the description of the surgery. “The head was shaved, prepped and draped
in normal sterile fashion…we used a sub-pial technique along the mid line,
exposing the cingulated sulcus and the pericallosal artery…” etc. It continues
like this, sterile words describing the patient as an object (“I am
titaaaaniiuuum” my mum began singing to me when she found out that I have
titanium plates holding my skull together). It’s so strange reading this, and
anaesthesia continues to amaze me. Some people say they can remember falling
asleep in general anaesthesia, I remember absolutely nothing. Granted, for
brain surgery they also give you pre-anaesthesia ‘relaxation’ drugs, but it’s
still an overwhelming read.
And now we are here at
the end of the first day of radiation treatment. I sit at the computer in the
study in Wellington, New Zealand listening to my mum, her partner and a friend
talking about my tumor. It’s the same conversation. Mum is asking why not a
single person has asked me what I was doing weeks to months before the
diagnosis, which is when the tumor apparently began to grow. In a way, I’m with
her on that. I know those in the medical field like to plays things safe and
not make claims, but surely someone would at least ask. Is there not a chance that
people with oligodendroglioma’s having similarities in lifestyle or situations?
Radiation isn’t fun. I
was looking forward to it and went in with a good attitude, but I think I would
be kidding myself if that was ‘fun’. Tomorrow, I will be able to take in music
to listen to in the room in an attempt to drown out the droning sound of the
radiation beams permeating my skull. It’s a bit perturbing. But all is well,
and there are only 29 days of it to go. Symptoms should begin to kick in soon
enough and with radiation to the head, they are mostly permanent. There is a
good chance I will become more like a male long term – losing the ability to
multitask and some computational struggles along with short-term memory.
Personally, I don’t think a lack of ability to multitask and to have short-term
memory really affects happiness levels anyway, so it doesn’t really concern me.
I will keep my brain active and used though, and fight these effects. The hair loss from radiation is
permanent and will only be in the spots where the beam goes in and comes
out.
After six weeks of
radiation at Capital and Coast District Health Board under Dr. David Hamilton
(he is great), I’ll have a three-week break before the even-less-pleasant part,
chemotherapy. This will go on for about eight months. So I’ll be in NZ for this
year for sure.
To be honest, I didn’t
believe it was really a tumour until
not too long ago, and it still amazes me even now that it’s real. It’s been
good to force myself to read the reports and know that they aren’t simply
radiating regular brain. I’ll get back to the fluff soon for lighter reading,
sorry!
* James would be right to
question this.
