I'm feeling much better today, not so tired, no so miserable. It helps that it's a mild, sunny day, warm enough to leave my coat in the car when I walked the boys to school. I'm going to pay some bills this morning, then have a nap before I head back to the clinic to get blood cultures taken from my port and arm, just to make sure my port isn't infected. If it is, it will probably come out, and I'll have my last dose of Taxotere through a vein.
It also helps that I had a couple of good, refreshing, naps on the weekend, which made up for waking at about 230 each morning and having trouble getting back to sleep. My left side is uncomfortable, it seems that I'm getting some sensation back on the inside of my arm and along my side, which is good, but it verges on being painful. Which is tiresome when my energy is as low as it has been.
One good thing I discovered during early-morning reading was some product information about Taxotere, which said that nearly 25% of patients with abnormal liver function tests get febrile neutropenia while on Taxotere, and that the nadir can begin 4 to 7 days after treatment. So there was a 1 in 4 chance that I would get febrile neutropenia on this drug, even with the G-CSF injection on day 2. I'll be ready for it next time, and hope that there's no delayed nadir, like my radiation oncologist suggested last week. Information like this is incredibly helpful, it takes away the feeling that everything that can go wrong has been going wrong, which was making it hard not to feel sorry for myself.
I realised on Saturday morning that it takes energy to avoid self-pity, but that a sense of perspective helps relieve self-pity.
I was succumbing to a crying spell on Saturday morning when David came up the stairs, saying there was a text message on my phone. I was expecting a text from a very dear friend who was due to have her second child by elective caesarean on Friday. Instead of the expected photo, the message read that their dear baby had died peacefully on Thursday, and that they were still trying to work out what had happened. I only spoke to her last Wednesday, everything was going fine. I am so devastated for their loss, and even now can't imagine how someone would begin to cope with going home from hospital without the baby that they had been looking forward to meeting and falling in love with. My troubles are nothing compared to that loss.
I started reading a book this morning, it's called Your life matters. It talks about the importance of being connected to your true self, being genuine, of working through the feelings associated with having cancer. Sounds fair enough, didn't say anything controversial in the first few chapters. But then it said that many cancer survivors say they never felt as "truly alive" or "real" as they did when they were having cancer treatment. I can't relate to that at all. I feel tired most of the time, which doesn't make me feel truly alive. At times I feel almost normal, but then I do too much, like sitting down at the computer to pay bills and deal with emails for a couple of hours, and I'm utterly exhausted. The fatigue makes me irritable, which makes me feel guilty, so I don't feel "truly alive" in that respect either. The times in my life when I have felt truly alive have been those exhilarating times when the sun is shining, or when the rain is pouring, when I'm with people I love, when I feel like I'm making a difference in the world, or when I'm simply just enjoying the beauty of the world and the company of others. That's what I miss, and what I'm looking forward to - shrugging off the shackles of fatigue and being able to be creatively engaged in and with the world.
Time for my nanna-nap. I'm going to have them religiously from now on.
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.
