January 14, 2013 | Straight Talk

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.