Monday the 30th of January.
The boys are finally in bed, and I'm getting a little time to myself in my bed. There's so much I want to write about, I'd need a few hours to do it all.
I had another blood test this morning, my neutrophils are still down in the severely neutropenic zone, my platelets are up a bit, but my haemoglobin is less than 80, so it's another two units of blood for me tomorrow. I didn't realise (never needed to know before) that whenever you have a blood transfusion, they need to take some blood for cross-matching, just to make sure they don't give you the wrong kind. I didn't realise I had the form for cross-matching in my bag when I went for the blood test this morning, so it has to be done tomorrow morning at 8, then my transfusion starts at 9. My poor veins! they can't use my left arm because of the lymphedema, so there are only two or three in the right arm that can be used, and I've already had a sample taken this morning and contrast injected this evening. I hope they hold up to giving the sample tomorrow morning and being cannulated for the transfusion. I've lost count of how many blood tests I've had this year. At least I seem to be getting very skilled nurses lately, the last dozen have hardly hurt at all.
The last few days have been good, my New Year's resolution of seeing or talking to people is working out well, and it isn't even 2014 yet! I've had a number of enjoyable conversations with friends in Melbourne, and three visits from friends and family. It's so good to see or speak with people, and the shared laughter is wonderful. I'm going to try to call people more, and read depressing news stories less, in the months ahead. The only downer is that I get tired quickly when I'm talking, I can feel my attention wandering, I worry that I'm repeating myself, and I feel slower in my thought processes. I'm sometimes able to be quick and witty, but I feel like my thoughts are swimming through custard at other times. I wonder if it's related to the pancytopenia?
When I was having the combined chemo and radiotherapy, the fatigue was more physical, and it came over me like a giant wave, or as if someone had just pulled the plug on my energy reserves. When my haemoglobin was falling, my arms and legs started to feel weak, like a rag doll with the stuffing slowly being removed. I'm used to that now, the transfusions have helped a little, but the nausea, lack of appetite, dizziness, and shortness of breath on walking are not pleasant.
I'm feeling a sneaky sense of satisfaction for managing to put away a couple of boxes today, and to have tidied up one small corner of my bedroom - I haven't managed to do much for ages, so it was a real achievement to see something that could be done, and to sprint in and do it.
I've been typing for 30 minutes now, and my arms are feeling heavy. I don't want to go to sleep, there are so many things I want to share - how beautiful our garden looks, the cheerful songs of the birds at 430am (first light), how this year has taught me to be calmer and more grateful for all that I have, how my calmness is slowly causing changes in my boys, how much I love them and want to be with them for many years ahead, how I keep hearing of more and more people with GBMs who have lived for many years (and, conversely, how survival seems dependent on location of the tumour, age of the patient, and what healthcare system they're in. If the tumour is inoperable, the patient over 60, or the healthcare system highly privatised, many people do not get treatment (surgery futile/too risky, treatment too likely to impair quality of life, chemo and radiotherapy too expensive).
I'm too tired to be worried about the results of my MRI scan. I'll wait for my rad onc to tell me. I'm too tired to worry about all my things sitting in boxes and filing cabinets at work. The people at work will look after them for me. I don't have the energy to worry about what my bone marrow is up to. I need to support it with rest and nutrition, and to avoid getting infections. I'm nearly off the Dexamethasone, and also the Sodium Valproate (Epilum), so I will hopefully feel a little less muddle-headed when they're out of my system.
My plan is to spend my time looking after my physical, emotional, and spiritual health, to care for my family and friends (as much as I can while my bone marrow limps along), and to one day be able to improve things for people with brain disorders, and brain tumours, and their families. I don't think I'll be turning this blog into a book - I have more important things to do than edit it for that purpose - a blog is accessible for whoever wants to read it, whereas books cost money, and I'd rather this be a gift for people who may benefit from it. I'll just have to check it over before I lift the privacy restrictions to make sure I'm not violating too many family secrets (I think I've been careful, but it's worth double-checking).
I'm blessed to know all that I do about the brain, and to have had tumours in areas that haven't caused major problems with memory, language, cognition, or physical abilities. For people without my background in neuropsychology, however, coping with changes caused by their tumours, understanding the literature, and navigating through the system must be incredibly difficult. I feel like we've been fighting battles all year, the first was to get through the breast cancer treatment without succumbing to an infection, the second has been to get through the fatigue caused by the combined radiation and chemotherapy, and now there's a third, unexpected battle, of dealing with my suppressed bone marrow. I might start getting regular gcsf injections if things don't improve.
I so hope that 2014 will be a better year, for everyone. Peace, love, and good health to all of you.
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.
