Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: you've got to laugh

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.

Tuesday, 29 January 2013

you've got to laugh

Many things have struck me as ridiculous in the past two weeks. I'll share them here in case I forget what was funny after the mastectomy, or if I lose my sense of humour during chemo...

When the surgeon said she'd have to take my nipple, I was shocked. "But I like my nipple!" I protested. She responded "It's a very nice nipple, but it's too close to the tumour. If I leave it, it's likely some of the cancer cells will be left too." Okay, I can deal with that logic. My friends later told me that they can reconstruct nipples, and do a tattoo of the areola. "Why do that?" I asked, "When I could have a boob like Barbie's?"

Having the bone scan to check for mets was a good chance to relax - 30 minutes lying flat on my back while a huge camera passed slowly down my body, starting an inch away from my face. I dozed off near the end (again) - but I'm delighted with the images. No mets, and a skinny size 10 skeleton which might get arthritis in the knees (like mum and her grandmother) if I don't lose the cutaneous fat that you can't hide around it. It's given me an idea for a motivational app for people unlucky enough to have a bone scan - I'll call it Skele-app. People will be able to upload their bone scan images and then dress their skinny skeletons in catwalk fashions of choice. Looking at bone scan images on the web convinces me we all have sexy skeletons, we just end up padding them in different ways.

The chest and abdo CT tells me that I've got sexy muscles on top of the sexy skeleton - again, the fat under my skin will have to go - but after chemo. A good friend who's been through chemo said that many women lose weight during the process, so I'm glad to know that my body has stocked itself well for the travails ahead. For the first time in my life, it's apparently good to be 15 kgs overweight.

The CT also reveals very little visceral fat (the fat inside your abdomen that surrounds your abdominal organs, or viscera), which is great. And all those episodes of excessive ETOH consumption in my late teens and early 20s haven't visibly damaged my liver. Lucky I failed in one new year's resolution to drink more alcohol...

I spent an hour talking to my gynaecologist today (learnt that a normal cervix looks like a donut, but that there's another kind that looks more like a flower - described as floppy!) The CT scan also shows that I have a bulky uterus, and a nice big fibroid nuzzled and calicifying next to it. We talked about what to do when they take out my Mirena tomorrow (it's an IUD that emits progesterone, and they want it out because my tumour has progesterone and oestrogen receptors). Mirenas aren't recommended for women who have had breast cancer, but I haven't found anything about keeping it in for women who do have breast cancer. I'm not fussed about removing it - I want every chance of a good recovery. Problem is, I had the Mirena put in because of very heavy periods, and if I get that again while undergoing chemo, it will be a problem. Having anemia while your white cells are under attack doesn't sound like a good idea. So, if she can, she'll do an endometrial ablation while I'm under the GA tomorrow. They have a nifty ablation machine that has built-in safeguards to reduce the risk of perforating the uterus - but if my well-endowed womb is too big, the machine won't let them do the ablation. So I'll have to have an old-fashioned ablation with a rolling ball type device, but she can't do it, which will mean a different gynaecologist on another day. Sigh. We agreed that having a hysterectomy and mastectomy the same day would be a bit too much, and would prolong the recovery. The thought of trying to manage the stairs at our house with a sore torso and aching pelvis isn't appealing. Now I keep seeing images of a recumbent roasting turkey when I think of what will be happening tomorrow. At least I will still have a head, and one of my wings will be stretched out.... I only hope I'm done well. Thank goodness for general anaesthesia...

Now I just need to speak to my oncologist to see if I need an iron transfusion to correct my anemia before the big event. That bottle of Jansz in the fridge is calling me....