NAD
I love those three letters!
After spending over an hour on the phone last week trying to book the MRI, I got a call at 840 on Tuesday morning saying that I would be having the scan in Hobart at 945 on Wednesday, and no, I couldn't have a later appointment because there were only two appointments that day, and the next one wouldn't be for two weeks. Sooooooo frustrating - it gave me just a few hours to organise accommodation for us, a kennel for the dog, notify the school that the boys needed to leave early, and pack a change of clothes for me and the boys.
Hobart is only 2.5 hours away from Launceston, but the thought of leaving early in the morning to race down there is daunting. So we left at 3pm on Tuesday, dropped Ginny off at Longford Park Kennels, took a backroad south through Cressy to Campbell Town, and arrived in Hobart at around 6. David played on his DS and asked how long it would take to get there about 100 times. Nathaniel lived up to his name's meaning (gift from God) and slept for half of the way.
The scenery is beautiful on the Midland Highway - I love the vast plains, the brooding mountains in the distance, the clouds, the sun-dusted grass, the tumbledown traces of early settlement. The trip was good for my soul, I've been feeling trapped in our house. Seeing the horizon makes me feel more optimistic, expansive, and acutely aware of how briefly we inhabit this marvellous planet. I try tarto teach the boys this appreciation, but they were too sleepy or distracted to notice.
After having a quick dinner at Fish in North Hobart, we visited my cousin Stephanie and her partner Matt. The boys had a lovely time patting Matt's old white cat, who is frail and skinny from an undiagnosed illness, but who still loves affection, and the boys loved her.
We stayed at the Customs House Hotel in Hobart - a lovely old sandstone building right down on the waterfront, huge room with 3 single and one double bed, breakfast included - we all slept like logs, and the boys want to go there again (as long as we can teleport to Hobart and avoid the long car trip)
Yesterday was a little stressful - they were running late for my 945 scan, and while I nearly fell asleep during the scan, they had put so much tape over the cannula that it bruised the sensitive and fragile skin inside my elbow when they ripped it off. We were told to go and have a coffee and wait for an hour or so in case I needed an ultrasound, which finally happened after 1. I had to see my neurologist at 230, so it felt like we were cutting it fine, and we didn't get time to have the leisurely lunch we'd fantasised about. Nathaniel didn't mind - he got the meatball Subway lunch that he'd been craving the whole trip.
The radiologist said that there were no areas of abnormal signal on the breast MRI, and she did an ultrasound, which showed nothing new. So she felt that a core biopsy wouldn't be necessary, and was going to talk to the radiologist in Launceston about it. I'm hoping to get a call from them soon - otherwise I'll be having a core biopsy at 1pm.
Breast MRI is more sensitive than mammography, but doesn't have good specificity. So if it detects an abnormality, it's very likely that there is something wrong, it just can't tell you what it is. If no abnormality is detected, then it's unlikely that there is an abnormality. But after all I've been through, I still want the other breast to come off. I know it's major surgery, and that it would be a shame to do it now that I'm starting to feel healthy again, but I'm not keen on living with the uncertainty about my breast - though I have that feeling about my whole body these days, wondering if any other cells are going to turn on me. I'm meditating, saying mantras, exercising, eating as well as I can with a limited appetite and a funny taste in my mouth - I have to trust that things will be okay.
The neurologist said the tingling in my tongue and jaw could be a medication side-effect, and that I am looking much better than I did last time he saw me. Quite a few people are saying that, and I'm feeling better too. Getting more walking in each day is helping, and I'm not needing to sleep so much during the day. I'm even feeling well enough to contemplate flying to the mainland to see a neuro-oncologist in Melbourne, and to Queensland for Easter. And I surprised myself on Monday by wondering when I should return to work - not that I have the energy or concentration to do it.
One step at a time. So good to be feeling better (almost normal, in fact), and to have the normal breast MRI result. Time for a nap, then a walk, then lunch, then maybe a biopsy (fingers crossed), then help the kids with their homework. Have a great day!
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
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.