27/4/13. 650pm
It looks like I'll be in hospital until Monday, at the earliest. Although me temperature hasn't been elevated since I came in last night (when I was feeling unwell and my temperature rose from 37.7 to 38.1 over thirty minutes), they're concerned that I had rigours last night when they were flushing my infusaport. I interpreted the sudden shivering, shaking, and teeth-chattering as a psychological reaction to them taking 20 minutes to finally needle my port, but it turns out that it can be a sign of an infection in the port being flushed throughout the body. They would have let me go home today, if it hadn't happened.
I guess in the scheme of things, it's better to find out now, while my white cells are okay, and not to find it out when they're due to do the next chemo (May 8th). The infusaport empties into a large central vein, so if any pathogens start to grow there, they get flushed throughout the body when the line is flushed with saline, which happens whenever they access the line. This is why it's important for them to draw up some blood into a syringe when they access the line, presumably so any pathogens that might be lurking in it will get removed, rather than getting sent throughout the body, which is called a septic shower. The body responds by shivering and shaking, or rigors. Which is what may have happened last night. In the worst case, the body can go into septic shock which is a life-threatening event. BP can drop very low, there can be other scary symptoms, and you can get organ failure. I don't want to go there.
So they're giving me IV vancomycin again, and another one that I can't remember. They'll check my CRP (a measure of infection) each day, and look at how the blood cultures develop on Monday to see if there's any evidence of infection from the bloods taken last night. If there is, the port will have to come out (easy procedure under local anaesthesia), and I can have my final three cycles of chemo through my veins.
How am I feeling through this? Irritated, tired, hoping I've had the last of my side effects. I can't see the point of getting upset. I've given up on the delusional belief that life should be fair. Fairness doesn't come into this. Getting upset by this is not going to help me. Staying positive will.
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.
