I saw my surgeon again today, the pathology results were back, and all 15 of my lymph nodes were clear, including the one identified by the sentinel node biopsy. Such a relief! We went out for dinner at Stillwater to celebrate, and started to plan our first overseas post-therapy trip: fly to Singapore, take the train through Malaysia to Bangkok, then go to Burma before it becomes too touristy. Ben pulled up some photos of the beautiful stupas in Burma, it looks idyllic. And now that Aung San Suu Kyi is out of prison, I don't have the same qualms about visiting there.
Practically though, we won't be able to go until next year - my infusaport will be in for 12 months after chemo finishes, and will need regular flushing with saline to prevent thrombosis, not something I would want to worry about while travelling through SE Asia. After Asia, we'll do a grand tour in reverse: Greece, Italy, Hungary (to see Elizabeth), Germany (to check out the town of Bardenhagen), France, England, and then Scotland to trace my Scottish roots. Spain and Portugal will also need attention, as will Scandinavia, especially LegoLand :)
Other good news: I only had one tumour. The MRI suggested three, but the pathology indicated it was just one 7cm whopper, impossible to palpate externally because of the thick fibrocystic tissue above it. It's incredible that it hasn't spread to the lymph nodes, given the size, but maybe my dense breast tissue made it grow slowly and prevented it from spreading. Let's hope so!
Given the size and location of the tumour (outer lower, outer upper, and inner upper quadrants), I'll need to have radiotherapy after chemo, to ensure that there is no spread to the lymph nodes that run more along the central axis, up to and past my collarbone. While irradiating this area will increase the risk of lymphedema, I guess I'd rather risk lymphedema than cancer recurrence. And I don't like the direction the more central lymph nodes take: straight up. I've seen enough scans, patients, and pathology specimens of cerebral metastases to make me very keen to avoid them... Even the ones that looked like green jelly beans when the pathologist sliced through the brain of a man who'd been jaundiced at death. I'd rather give jelly beans to the kids to eat, than have them grow in my head.
So my dressings have been removed (nice straight scars, healing neatly), my first seroma drained, and a celebratory meal at Stillwater enjoyed with a greater lightness of heart than I've felt for weeks. I'd meant to share the Stillwater voucher, given to me after our ccn conference last year, with my conference committee, but I think they'll understand. Ben and the boys suffered my regular preoccupation with the conference for much of last year, and they deserved to enjoy a feast as much as my committee. I'll just meet with the committee there at a later date:)
If you've never heard of a seroma, here's brief explanation and amusing story: it's a build of fluid under the wound site, a mixture of blood and serum. I had two drains in after surgery to drain the fluid away, the first was removed on Sunday, and the second yesterday. Neither had been draining much fluid over the previous 24hours. So it was strange to hear my chest squelching when David hugged me after school last night, and it was even stranger to look down and see a bulge forming under the scar, almost as if my breast was trying to regrow itself!
The seroma wasn't uncomfortable, and it didn't hurt when my surgeon drained off 60ml this afternoon - one good thing about having post surgical numbness to the chest. I didnt feel the needle go in at all. The numbness is also a weird feeling - there's a loss of sensation, but also a kind of hypersensitivity in the skin under and behind my arm, a bit like the feeling you get when sensation is returning after a limb has gone to sleep. Not entirely pleasant, or unpleasant. I'm gently stroking the skin at times to get it reacquainted with sensation, as it hurts sometimes.
Speaking of sleep, I'll be turning in now. I have our lovely king-size memory foam bed to myself, and I'm working hard on developing good sleep hygiene. It's bliss to be able to sleep uninterrupted by loving children (who ended up sleeping on, or next to a single futon on the floor with Ben last night! I trust they'll stay in their own beds tonight).
Thanks to everyone who has sent me cards, emails, texts, and letters. They've given me so much joy and strength in the last weeks. And the flowers! I've never had so many!
As one kind person wrote in a card "there is only this moment."
May every one of your moments be blessed with love, joy, and contentment.
Sleep well.
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.
