Bugger.
I had a repeat mammogram and ultrasound a few weeks ago. The mammogram was reported as showing more micro calcifications than previously in the upper outer quadrant of my (still) fibrocystic, dense breast. An image-guided biopsy was recommended (very painful when it was done last year).
My rad onc recommended I have a breast MRI instead - I'm still waiting for the service in Hobart to get back to me with a time. My breast surgeon is away - I have an appointment with her on Friday - I'm not keen on another biopsy. There's some evidence that disturbing a tumour in this way can allow cancer cells to spread elsewhere in the body, like seeds dispersing through the circulatory system. If there's cancer there, that breast will just have to come off as well. Wish I'd done it prophylactically last year, only I was a little busy. If there is a tumour, I won't be able to have chemo, my bone marrow won't cope with that again, but I guess there's always radiotherapy (again). And all the alternative cures that have filled my inbox. "cure almost any cancer in 31 days at home". "how two simple foods can cure almost any cancer" - the last one is a mixture of flaxseed oil and quark or cottage cheese. The number of alternative remedies touted for cancer treatment is quite overwhelming, and sometimes the information is conflicting. Some say to avoid dairy foods completely, others say they're okay. So damned confusing.
Good news on my bloods, though. I saw my haematologist yesterday, and she said my bloods have improved to the point where I can have my gcsf injections every second day, rather than daily. A relief for my tummy, it's been getting jabbed every evening for the last few weeks. My infusaport needs to be flushed with saline solution every 6-8 weeks, so I'll get that done around the 8th of March. It's still tender to touch, but will hopefully be better by then.
I wonder - if I have a mastectomy on the right, where will they collect blood from? If they spare my lymph nodes, then I suppose the risk of lymphoedema won't be as great as on the left, where 14-15 nodes were removed. Not worth worrying about just now.
I'm so tired, I haven't slept well the last two nights, the boys have been disturbed in their sleep. I have to try not to sleep too much in the day, but also need to recognise my body's need for rest. Sleep also helps me to shut off my mind.
I'm going to prune some roses this morning, even though I'm not supposed to in case they prick me and cause my lymphedema to flare up - I'm sick of living in a medically-imposed nanny state. I just want to be normal again, so I'm going to start doing more normal things, even if I'm not supposed to. I'm sick of being inside all day and not seeing people. I'm heartily fed up with the fatigue, and how it makes me grumpy or miserable if I don't rest when it tells me to.
Sorry to have a whinge. I'd hoped that putting it down here would help me let go of it, but I'm feeling like having a good cry now, out of frustration, and feeling foolish for allowing myself to self-pity when I should have just had a nap, dreamt some dreams, and woken up feeling better. Sleep can be so therapeutic.
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.
