My latest MRIs looked good - nothing new or worrisome on the brain scans, and the breast MRI looked okay as well, though the report wasn't available when I saw my oncologist, so we have to wait to be certain that the lack of bright spots on the scans means that everything is okay. I'm still considering having a prophylactic mastectomy, so I don't need to worry about it any more. The thing that's holding me back is the desire to avoid any further surgery if possible, and the ongoing daily discomfort from my first mastectomy. It feels like all the tissue under the skin on my right side has been scraped out, leaving a constant sense of tightness that is most uncomfortable at night if I try to sleep on my left side. The same discomfort shouldn't happen with a prophylactic mastectomy on the right side, because there won't be removal of the lymph nodes on that side, which is why it feels uncomfortable on the left. These seem like minor and insignificant issues compared to the GBM, but I can't be complacent, breast cancer is still a serious and potentially life-threatening condition. Given my bad track record with immunosuppression from chemotherapy, I probably wouldn't be able to have chemo again if there was a recurrence of breast cancer, so it would be pragmatic to get the remaining breast off as well. I just need to prepare myself for that. I've been doing so well lately, I'm not keen on going to hospital for anything. I'm so grateful that my GBM hasn't progressed, and there's no sign of it spreading or recurring, I must be doing something right.
I won't write for long today, it's already 9:41am and I'm going to work on sorting through all the papers on the dining table today, including getting our tax things ready for submission. The house also needs a lot of tidying: clothes to be sorted and put away, kids' things to be put away (I'm tempted to put them all in boxes and leave the boys to sort them), and four boxes of my books from work need to find homes, but all our bookshelves are full. Maybe some rearranging will create more space. I get a greater sense of accomplishment and stress relief from doing the garden - pulling weeds and pruning are gloriously therapeutic activities, though the garden is littered with old rose prunings and a thorny bush that mean I have to be very careful when pulling things out. I'm going to go out there now, before the rain starts, and remove the sticky weed that has escaped our weekend efforts. I wish housework was as invigorating and satisfying...
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.
