Boxing Day, 2013, 230 pm
I'm lying on the couch in the family room, resting, and everyone keeps asking me if I'm going to go to sleep. I don't feel like I need to sleep right now. I had a good sleep last night, after a good nap yesterday afternoon. I'll sleep when I want to and need to. I need to write just now.
Our Christmas was nice and uncomplicated. The boys were up early and hoed into their Santa stockings, then spent the day building Lego (followed by tantrums today when their mildly autistic cousin broke part of one). Mum had brought food over the day before Christmas, so all we had to do was roast a chicken and some veggies, and put the food on the table. Everyone was happy with the selection, and Mum was very happy to take home some leftovers. The only downer was waking up and realising that it was our second Christmas without Dad, and remembering that Ben and I had thought that 2013 couldn't possibly be worse than 2012 was. We're just wishing for 2014 to be better now, and are not making silly statements that may tempt fate.
I had my bloods taken (again) on Monday morning, and got a call from my rad onc, saying they'd fallen again, and that he'd arranged for me to see a haematologist on Tuesday morning. The clinic then rang me to ask if I could see her at 2 that afternoon. My haemoglobin had improved after the transfusion, but everything else is still low, or trending downwards, so I now have a pancytopenia (white cell counts, neutrophils, lymphocytes, HCT, and platelets all low). She's ordered some additional blood tests for Friday (PEP/IEP: quantitative Igg, B12, folate, and iron studies), and I'm not to take Valcyte again until we see if my bloods recover. It could be that the Valcyte is suppressing my bone marrow. If my bloods don't recover when I'm off the Valcyte, and if they can't find another cause, then I may have to have a bone marrow biopsy.
I love my haematologist, she's a wonderful woman with a fantastic manner, though I'd prefer to be working with her in the clinical school, where I used to do sessional lecturing to the medical students. It was slightly discombobulating to hear her say that she had been following my progress over the past year, given my "crashing neutropenias" and "rapid nadirs" - it turns out that I'd been discussed at the oncology meetings, and that they've been wondering if I have a genetic or immunological predisposition towards having a poor bone marrow response to chemotherapy. Great! It's so lovely to be special. Even before my brain tumours were discovered, I was an unusual patient. Apparently not many people respond to breast cancer treatment as I did. It probably wouldn't have made any difference to me if I'd known at the time. It was just something I had to get through, just like this is.
So I'm trying not to worry about things until I need to worry about them. I'll stay off the Valcyte until my bloods recover. If they don't, I'll have further tests. I may need to have "bone marrow support" with gcsf shots, and I guess the results of my bloods will determine if I restart the Valcyte, and if, or when, I start the chemotherapy with Temodal that was supposed to start last week.
In the meantime, I'm enjoying being at home with the boys in the school holidays, and am looking forwards to seeing the next Hobbit movie with them tomorrow. I'm trying to avoid the sugar and carb-laden Christmas treats in the house, and to follow the ketogenic diet for cancer, though it's hard to prepare food when you feel nauseous and don't know what to eat. I enjoyed the pad thai that Ben brought home from the takeaway today, so I saved some for dinner - not on the diet, but tasty.
I'm also meditating and imagining myself healthy and cancer-free whenever I get the chance. I'm feeling more peaceful and less irritable as a result, though Ben says it might be because I'm nearly off the Dex and my Valproate (Epilum) dose is going down (killjoy!). My face is still puffy and has fuzzy hair around the sides, but I don't care. I don't look in the mirror much any more, I'm just happy to be alive. Doctor Who is on tonight, we're seeing the Hobbit tomorrow, and although this year has been tough, I've grown and learnt to love myself and others better than I did before.
Love is the most important thing.
(I just wish I could have a fairy godmother to come and clean up all my clutter, and sort out all my papers and electronic files! I've set these tasks aside for later, when I'm well, I know they're not as important as getting better, but they're still something I don't want to worry about… I think the worry is a well-suppressed fear of dying without all my photos, presentations, lectures, and useful files saved in a format that others might be able to access. I feel a responsibility to the family name to leave a legacy behind, to make sure my life has meant something, to help people. Ben says I'm being grandiose and sentimental, maybe he's right, but I've always been like this)
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.
