Well, at least I'm consistent. I'm excellent at becoming neutropenic when the doctors say I shouldn't. I was early with my neutropenia on the last three cycles of chemo for breast CA, and people don't usually become neutropenic on Temodal, my current chemo drug.
I've spent most of yesterday (Friday) and today sleeping in bed. My body feels utterly drained of energy (it's an effort to lift my arms, I feel weak and floppy), and I don't have much of an appetite, though I can eat if I put my mind to it. My bloods on Wednesday showed that my neutrophils were down to 0.1, so I was told to stop taking my Temodal, as it's the only chemotherapy I'm on, and it might be suppressing my white blood cells, though it shouldn't.
I had my RT as usual on Thursday and Friday, and asked on Friday if I should be having my bloods done again, but the nurse, who I hadn't seen before, said no. We got a call at 430pm saying that I should have had them done, and could we come down before the clinic closed to do it. Lucky we live only 10 minutes away, and I have Caroline here to drive me. My bloods haven't improved, but I haven't spiked a fever or developed any other signs of infection, so I'm hoping I'll be able to avoid going to hospital for this neutropenic episode. It's much more pleasant to be at home, apart from having to deal with the kids fighting, and Ben getting anxious that I need to get up and go for a walk so that I don't get blood clots, when the only thing that gets me out of bed is the desire not to wet it. I have never felt so feeble in all my life. When I woke up after sleeping today, I wasn't sure what day it was, or if it was morning or afternoon. At least I know the year, month, and season, and where and who I am, but it's disconcerting to be disoriented to day and time, however temporarily.
I've had some pretty low moments over the last couple of days - feeling so drained of energy makes me realise how much I've generated my sense of hope and positivity from some inner store, and it's hard to get in touch with it at the moment. There's still an ember burning away, and the best I can do is sleep when I need to, walk for short distances outside when I can (once a day) and rest and enjoy the quiet company of family and friends at other times. Pushing myself too hard, or being afraid, is counterproductive, I simply can't do everything I could before. I need to focus on resting and recovering from this 10-month assault on my body.
In January, I described my forthcoming treatment for breast cancer as a surgical strike that would be followed with chemical and nuclear warfare. I had no idea that there would be a second enemy hidden deep within my central command centre that would require two surgical strikes and combined chemical and nuclear warfare, plus a third mopping up with chemicals, just in case. My knowledge of military history is gladly insufficient to allow me to identify a battle of similar stages, but I feel that I have been through a terrible war, and that it will be good to apply the soothing balms of love and peace very soon.
Ironically, my hair, or what is left of it, is growing back thicker, darker, and curlier, than ever before. It could have been fun to have dark spiral curls, though it probably would have driven me mad. Unfortunately, it only covers the back left quadrant of my head now, and will need to be clippered off soon. Even my low level of vanity has limits. I will then become a bald woman, which will make me very easy to identify if I pursue my desired new career of advocacy for people with brain disorders. Nothing like standing out in the crowd.
There are a number of people with different kinds of cancer or brain disorders who have blogs which are public, and which are used to advocate for people with those conditions. I've thought about doing that, and part of me is in conflict about making this blog public now, as I'm told it would be helpful for people going through similar experiences. I have made it private because the initial intention was to help keep friends, family, colleagues, and others updated on my progress. It has been therapeutic for me to be able to write here, and knowing that it's private has allowed me to write more freely than I would if it had been publicly accessible. If I made it public, I would need to edit it, and I don't have enough energy to do that at present. Once I'm stable, I'll start advocating. At the moment, I'll just work on getting better.
Please don't worry about me. They say that the final weeks of brain radiotherapy are the hardest. I'm still here, still very much alive, feeling loved and cherished by so many people. I'm grateful for your prayers and good wishes, and wish I could sit down with every one of you and have a cuppa, or at least a chat on the phone. I just need to get through this last bit and I'll be feeling better. After next week, 3 weeks without chemo to work on diet and exercise, and then the final push. I'll get there.
And in case you're interested, I found that there are two kinds of GBMs: primary and secondary. Primary GBMs are more common in men aged over 50, and are more aggressive. Secondary GBMs arise from astrocytomas or other glial tumours, and may have better outcomes. So if my tumour was growing back in 2009 or earlier, then it may have been a lower grade tumour which changed into a GBM. Still not great, but better than a primary GBM. I'll do some more reading on the marvellous internet, when I get the energy.
Wishing you all love, peace, and health.
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.
