Saw my rad onc tonight, for the first of what will be weekly reviews after my radiotherapy finished last week.
The plan seems to be to gradually wean down the dexamethasone every 5 days. So after being on 2 mg in the morning and 1 mg at lunch, I drop the dose to 1.5mg in the morning (mane) and 1mg at lunch (midi) for 5 days, then 1.5 mane and 0.5 midi for 5 days, then 1.0 mane/0.5midi, then, I guess, 0.5 mane and 0 midi for 5 days, and then, hopefully, no more. He said that the "hypomania" I experienced when I was on the high doses of Dex may swing the other way when I'm off it. I'm proud of myself for not growling at him - I know I seemed hypomanic, but I don't believe my euphoria and elevated mood was purely steroid-related. I was so happy to be alive, so excited to have dodged a very bad outcome, it wasn't all the Dex, though I suspect the steroid helped me to think and talk faster than usual. Since the surgeries, I have gathered enough inner stores of love and happiness from this year, and my whole life, that I'm confident I'll be able to get through any dark days ahead. If I'm feeling down, I'll get on the phone to friends and family, so watch out! Talking and laughing with you will be all the therapy I need.
When I'm off the Dex, my puffy face with the fine hair around the edges might then return to normal, not that it bothers me. I don't look in the mirror that much, not having any hair to worry about drying, though what I've seen of the regrowth is pretty amusing. I'll get one of the boys to take photos to illustrate the fascinating pattern that conformal radiotherapy to two different areas via 9 different approaches has achieved. If the hair doesn't grow back over the RT entry and exit spots, I'll have to keep it shaved - there's no way I could grow enough hair to cover the bald spots, and I've always loathed the comb-over look. So it looks like I might get to be a bald woman after all. I don't think I'll do it often in public - it's cold, I need to protect my skin from the sun, and I'd like to avoid the pitying or curious looks of others. In certain situations, it might be fun to be bald, but I think it would be more fun to whip off my hat or scarf and show off the battle wounds after demonstrating that a person who has had brain surgery can still be normal. I have tried my wig on, but it isn't comfortable, and I feel like a fraud. I'll have to see if I can get a refund, I've only worn it once. I have a number of lovely scarves that I can tie quite well, and a collection of hats. With the headgear on, no-one will know what kind of cancer I've had, and there won't be any prejudgement about the state of my cognition from the scars on my head. Oh! I'm still concerned about how others see me, aren't I? Hard to give up the habits of a lifetime, and look at how good I am at rationalising them! I will go bald in public some times, it will just depend on the context and how I feel.
What else did my lovely rad onc say? (I'm writing this as much as a record for myself as as scintillating information for you, dear reader).
Three weeks after the RT finished, I start chemo again - as long as my bloods are normal. This will be with a lower dose of Temodal, again in capsule form (I don't know if my veins could cope with more infusions). Six cycles of chemo: 5 days on, 21 days off. My white cells had dropped from 1.2 to 0.7 yesterday, possibly because I have a cold, and there's a risk of bone marrow suppression again, partly just due to the drug itself, but also because I'd had the 6 cycles of FEC-D for my breast cancer. Lucky me! All I can do is get a good mix of rest, healthy food, and exercise as I can, as well as laugher and love with family and friends, and keep on going.
MRI usually takes place after the complete course of treatment is over, but we can do mine earlier, on the understanding that we don't do anything if there's pseudoprogression (Psp) (where it looks like the tumour has progressed, but it really hasn't). I've done my reading on Psp, and it seems they know how to tell it apart from true progression, and it's even associated with better outcomes, so that's fine by me. I'm more concerned about new nasties lurking in other parts of my brain. I hope there aren't, but I'd rather get them out when they're small and manageable. I sometimes have word-finding difficulties, and have been dropping things with my right hand lately, which is probably just due to my general myopathy and being sensitised to looking for anything abnormal, but I'd like to be sure that there are no new surprises in store, like something growing in my left temporal lobe. Feeling like a hypochondriac again, must not feed the fear.
I saw my breast surgeon for a review last week (all okay), and she wrote a referral for a repeat mammogram and ultrasound to be done in January. I'd prefer to just have a breast MRI, as it's less painful, there's no ionising radiation (I've had more than my fair share of that this year, I think), and I thought it was more sensitive, but my rad onc said that a mammogram would still be needed. I'm happy to have an ultrasound, I just hate mammograms. Drat. It's so uncomfortable, though at least there's just one breast now, so only half the time and discomfort.
Time to sleep. Sweet dreams.
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.
