Background and overview

I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.

My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.

If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.


Monday, 23 September 2013

Home again - a tiring and busy day

It's so good to be home! 
The house is silent. 
No dinging of bells, no shuffling of feet, no rattle of observation trolleys. 
No visitors to check my obs.
No chance to ask for obs to be taken.
No need to worry why my temp might be up, my BP down.
Hardly a sound from outside.
The silence is perfect.


We had a good run up from Hobart. I sat between the boys in the back seat, Nathaniel dozing against me, David reading a Simpsons comic and wanting to chat. I don't believe that I slept, but I had my eyes closed and I was resting for most of the trip. Ben played the Nawang Cechong Tibetan Flute CD that I grabbed when we left - music that kept me company when I flew back and forth from my postdoc in Boston in 1997, and something that was just right for the car riide today.

We grabbed some Hungry Jacks for lunch (I was ravenous), and Ben took me straight to the Holman Clinic, where I lay under a warm blanket on an examination couch while my rad onc dictated referrals for second opinions and other consults. He cracked me up by describing me as a lifelong heavy smoker - I have never, ever, smoked, or had any interest in doing so. It still makes me laugh to think of it.

From my bed, I could see the pre- and post-operative MRI scans coming up on his screen. A very satisfying experience, like a game of peek-a-boo. Tumour there, tumour gone. Tumour there, tumour gone!

The round black mass that had haunted me is no longer there. The brain that had been pushed to the side by the invading tissue has moved back to where it belongs.

The midline between the cerebral hemispheres is nice and straight, as it should be.

My lateral ventricles are bilaterally symmetrical, and no longer compressed.

The dark shadow of oedema in the right parietal lobe is much diminished.

It looks like a healthy brain.

It feels so good to write those words. My brain looks like a healthy brain.

I'm so happy, I'm crying.



I spoke with an old friend tonight, a neuroradiologist who looked at the scans for me before the first operation. I had left him a message asking if he thought it looked like a glioma, and he emailed me this response:
 I admit that Glioma was the first thing that flashed across my mind when I looked at. I didn't mention this for two reasons. 1) pre test probability of mets so much higher that it should have been a case of "uncommon presentations of common things being more common than common presentations of uncommon things (in this case two diagnoses) and b) diagnostic biopsy would be approached the same for both and c) enough anxiety about the abscess question without raising more uncertainty. I think proceeding on the basis of mets was the right choice. 

I asked him how long he thought it might have been growing there, as my impression was that it must have been there for a while, given the thickness and lobular quality of the vascular rim. Blood vessels don't just grow in an organised way like that in the brain overnight, at least not in my understanding of how things work. He said that given the size of the tumour, and the lack of dramatic mass effect and oedema, it's probably something that has been growing there for a number of years, and had only just made it's presence felt. Just like my breast cancer. A slowly growing tumour that eventually reached a size big enough to have an effect.

It's strangely reasuring to think of it this way. It helps me understand my longstanding "sinus" headaches, my sleep problems over the last few years (trouble staying asleep through the night, not feeling rested, which I blamed on co-sleeping with the kids), my chronic sense of fatigue and occasional mental lethargy. All year, I've been wishing they'd done a brain scan, not that I thought anything was wrong with my brain, but I just wanted one for completeness. And I was so fatigued. Just thought it was the chemo.

If my big GBM has been growing away for a number of years (it wasn't evident in 2001 when I was an fMRI control), then that explains why I managed to grow a second baby in the contralateral hemisphere. Those cells get around, they got around, and thought that the left occipital lobe seemed like a nice home. But we've got them out now, and the CT/RT combo will mop up the remainders. There could be other GBM cells in there, but 28 weeks of temozolomide should put the damper on them deciding to gather together and party.

I just have to be vigilant for any strange neurological signs, but we know  we have the tumours out.. And mine was slow-growing, albeit high-grade. You see, no-one knows how quickly these things grow. Once they get to the size and mass that causes effects, you can't look at the cells and say that it grew quickly - you can only say that it's an aggressive tumour type, and it's the luck of the draw as to where it was growing. Superficial and resectable like mine are better than deep and inoperable. The latter are going to be fatal, the former can be survived.

I'm talking without an evidence base here, of course, I'm not brave enough at the moment to delve into neuropathology texts, but I am speaking from what I've learned in listening to neurologists, neurosurgeons, neuropathologists, and neuroradiologists over the last 20 years. Some tumours grow quickly and cause gross oedema and mass effects, some grow slowly and take a while to have an effect, and can be treated if caught in time.

This isn't to understate the seriousness of brain tumours. They're horrendous things, stuff of nightmare, and shouldn't be allowed to exist.

I had my planning session today, where they made the frame for my head that I will wear for each of my RT sessions over the coming weeks. They asked me if I was claustrophobic (no), and I had to lay on a tray in the CT scanner, and they put a lovely warm frame over my face, it felt like having a facial. Once they were happy with how it fitted my head, they put cold towels on it to set it. I kept my eyes closed the whole time, so got a surprise to see what it looks like - I had been wondering how I was finding it so easy to breathe - there are plenty of air holes, and I'll be able to see.

The technicians explained that the RT will be given on the same linear accelerators as my breast cancer treatment, only this time I get to wear my head frame, which I can keep at the end. Patients do find the treatment tiring, and sometimes there can be skin changes, though not as bad as it was for the breast cancer, because this time they'll be aiming inside my head.

I've asked for morning appointments  again, so that I can rest up before the boys come home from school. It's going to be strange not driving, but I'm sure I'll manage with lifts from friends or Ben. Just need to get adequate rest, nutrition, and exercise. I'll make it through.

Overalll, the treatment will take 28 weeks, from diagnosis to end of chemo. The breast cancer treatment took longer from diagnosis to end: 34 weeks! So I'm telling the boys that we'er getting a six-week discount on time. 

I'm hoping that we'll be able to do nice things each weekend as a family throughout the treatment. I've already asked the boys to choose some friends who they'd like to see in the holidays, hoping that the kids can go off and have fun with their friends while I have my treatment and get the rest that I need.

It's good to have an end-point mapped out: I will be finished my treatment by the 11th of March 2014. Two very important family birthdays occur in that week. I hope both Elizabeth and Caroline will be able to be here so that I can celebrate their birthdays, and they can celebrate my end of treatment. Strange that the chemo nurses who rushed to see me today are called Fiona and Caroline - it's like my own little sisterhood of nurses (and makes remembering names easier). I told them it was good that I'd given the RT and CT teams their chocolates and thank you cards before I was diagnosed, so that they'll have to treat me extra specially well now. They laughingly agreed, and Fiona said they had been pigging out on the chocolates and felt terrible when they heard the news.

It was good to feel supported and engaged at the clinic today - though I was wondering how I would cope with the pity response. I'm working on a simply story - I had breast cancer and a couple of brain tumours, they're gone now. I just don't know how I'd cope with an emotional response from someone overwhelmed by the unfairness of it. I don't have the time or energy to indulge in that. Crap happened, we'e moving on. I'm going to do everything I can to enjoy every moment of this life, and to share that with my loved ones. I have a strong sense of faith that I will get through this and emerge stronger than before. It's just going to be a bit tiring.

Apart from my brain getting cut open and zapped at the start, I have a feeling this treatment regime won't be as bad as the breast CA was. No infusions of chemo drugs withe the accompanying nausea and  neutropenia. Radiotherapy fatigue will be out of the way at the beginning of the treatment (the first 6 weeks), did I mention no infusaports or infusions or IV antibiotics? Blood tests every three weeks only, to check for thrombocytopenia, a clotting condition, which can be treated.
  
We're seeing another oncologist on Wednesday for a second opinion, so it will be good to sit down and listen to somebody new. I'm going to try to be different for a different doctor - I feel like I'm always asking questions and making assumptions and jumping in and trying to work it out. It will take great self-control and discipline, but I want to just sit and have someone ask me the questions and tell me what they think.

As I have had more than enough cancer cells in my body this year, I hearby declare my body a camcer-free zone. The naughty bits have been removed, and they won't be growing back. Anywhere.

My radiotherapy face mask, to keep my head positioned perfectly.