The nadir. Sounds dramatic. I was told I'd probably spend all of day 8 (Wednesday) in bed, and that I'd feel pretty bad for the days after that. I'm glad the predictions were wrong! I saw the oncologist on Friday, and the blood results showed that I'm officially neutropenic (neutrophils 0.3, which is better than 0.0, but the lower end of the normal range is 2.0). He did the nadir blood test to confirm the expected effects of chemo on my white cells, and to help plan for the next chemo cycle, which is due to start on the 20th. Being neutropenic means that I have to be very careful to avoid infection, and I have to go to hospital immediately if I get a fever over 37.9, as there's a risk of septic shock, which sounds scary enough for me to not want to know anything more about it. Chemo patients get taken immediately into a separate part of our emergency department, to avoid the risk of infection from other patients. To help support my body in the next cycle, I'll be given an injection of something to boost my white cell production on the day after chemo. The most likely side effect of this will be pain in my bones, for which I will need narcotics (great! Just what I need! Another reason to feel tired), but a serious side effect is a ruptured spleen. I don't want to add that to my side effects tally.
My surgeon told me I'd experienced nearly every side effect when I saw her on Tuesday (200ml from the seroma, it's slowing down!), and I imagined a row of little badges, one for each side effect - seroma, axillary web syndrome (aka cording), nausea, dehydration, dry mouth, oral thrush, gut disturbance, constipation, diarrhea, bone pain, fatigue, excessive sedation with some painkillers...
Hair loss is due to start in the next week, but I'm prepared. I have found some elastics to tie it into pony tails, and I'll get Ben and the boys to cut them off for me. Then Ben can use his Wahl hair clippers to make it even, and if my scalp is not too sensitive, I'll get him to shave my head. Then I'll pack my hair into a ziplock bag, singing 'nothing compares 2u', and start my new life as a skinhead. Or a Buddhist nun.
I have 6 hats and 2 wigs to choose from (one long, dark, and natural hair, loaned by a dear friend, the other shorter and synthetic, more my hair colour). People say you feel the cold on your head at night, so I'll be wearing a beanie to keep warm in bed, not that I should need it while this heatwave continues. We've moved to the downstairs bedrooms because it's just too hot upstairs to sleep, though unlike Melbourne, where the nightly minimum is only 20, it gets to a nice cool 12-14 overnight in Launceston. Median property prices are pretty good too, if you'd like to move down here. We need healthcare workers, and lots of workers under 65, though finding work can be difficult for some.
Launceston is a lovely place, with lovely people. It's so touching to have friends of friends, or old classmates, offering to help. I've even made a new friend in the last couple of weeks, a delightful woman who I'd only met once before, and who is wonderful to spend time with. There's a generosity of spirit in the people here that I never experienced in the community where I lived in melbourne, but maybe it's because I'm home, that I'm one of them, and that I never had that depth of contacts and belonging in melbourne (even though I have some absolutely marvelous friends there). I think the less stressful pace of life here also helps foster a sense of community, and a willingness to help other people. Everyone is only 5-20 minutes away, we don't spend hours commuting each week, there's more time to spend with other people. I'm so glad I came home.
So It's been a pretty good week. I had a long talk with a genetic counsellor, who thinks there is a very low chance of me having a BRCA gene, so my ovaries look safe for now. I found I had enough energy each morning to go for a walk (Ginny is very happy about that), and then to potter around in the kitchen making breakfast and my vege juice. Surprising how long it takes to do such simple things, though it's interspersed with attempts to tidy up the kitchen and family area. I saw a condition on Facebook described as "housework distractibility disorder," where you start one task, get distracted by another, then another, and at the end of it have very little complete. Luckily, doing this each day has resulted in the kitchen and family area being reasonably tidy. I even found the energy to move some small tables around so that the furniture in the family area looks quite good. Eclectic, but I'm happy with it. One troublesome room down, three more to go.
So, my routine for the last week was: get up with the boys around 630 (wow! Regular awake time does improve sleep hygiene); get their food ready; encourage them to pack their own bags; shower (doing lots of conditioning to make my wig donation as lustrous as possible); breakfast with pottering around; walk for 30 minutes (preferably with a friend); talk to visiting friend about renovation ideas; start to feel tired at 1030, but also ravenous; cook and eat eggs or some other protein; lie on the couch and watch abc iView (Shakespeare, ages of Britain, Doctor Blake mysteries, miss Fisher's murder mysteries (I lust after her clothes), the pre-raphaelite brotherhood). Lovely to watch grownup tv uninterrupted.
I haven't felt like sleeping during the day, just needing to lie down, drink water, and eat lots of protein. I turned into Mumzilla around 5pm on the one day when I hadn't had enough protein - I felt achey and ravenously hungry, and although I knew I needed to lie down, I needed to eat more. This meant cooking dinner (chicken sausages and veges), and getting very irritated with two boys who had not unpacked their school bags, and who complained at everything I asked them to do. I feel bad for getting so cross with them, but I felt like utter crap, I needed to eat and rest, and in drawing up a list of chores for them to do, I have realized how much I've been doing for them because it's been easier than fighting about it. I don't have the energy to do so many things for them, and it will be better for all of us if they start pulling their weight and getting into some good routines. Avoiding conflict has led to some problematic behaviours and attitudes. Luckily, setting clear routines and expectations is seeing those behaviours resolve.
It's been lovely having the house to myself during the day, with just the dogs for company. Po-po sleeps on the couch next to me, and Ginny lazes outside. I go out the front every hour or so and turn on the watering system, so the garden isn't looking as parched as it was. I'm getting plenty of time to fantasize about how I want to renovate this house, and I'm starting to make plans for the garden. It's nice to take a break from psychology and to be thinking about creating beautiful things. I might even start painting again, though I need to practice my piano. Beethoven's Pathetique and Tempest sonatas are calling to me. Wish I could sing with the MSO chorus again, but I can sing along to recordings of some of the works we sang. Redoing Schnittke's choral concerto would be fun (difficult works being good for your brain) I think there's a recording with the score on YouTube...
I'm hungry again, best cook lunch to feed my poor cells, they are clamoring for food after suffering an unexpected attack that depleted all their resources. Food, then sleep.
Next week: week 3. Predicted to be the recovery week. Fingers crossed.
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.
