At some time when I was in hospital in Hobart, I pasted some info onto the notes page of my phone which spoke of the benefits of taking chloroquine (CQ, an antimalarial) immediately after surgery for GBMs, as it seems to help with killing the glioma cells during radiotherapy, which usually starts two weeks after surgery. I don't know why I didn't share it with my rad onc at the time, but finding it yesterday was too late. I start my CT/RT today, and starting another medication at the same time in a body that has just had 6 months of treatment might cause unexpected side effects that could jeopardise the basic treatment protocol. While there are potential benefits of adding other medications, there are also risks, and the Temodal is the one I need to take.
I took it on an empty stomach at 430 this morning when I woke, took my thyroxine at 5, and my other medications and breakfast at about 7. I started to feel unwell around 730, took an ondansetron for nausea, and vomited everything up at 8am. Ben was comically telling me not to vomit, but it wasn't something I could control. I agree with Shrek "Better out than in, I always say!" So now I can see my rad onc today and talk about something to stop me vomiting. At least I must have absorbed some of the Temodal - it taken 3.5 hours before everything came up. Maybe I'll have to take it two hours after food instead of 1 hour before, and also after an anti-emetic, in the afternoon, so I can have all my usual medications in the morning. I'll see what my rad onc says today.
I took it on an empty stomach at 430 this morning when I woke, took my thyroxine at 5, and my other medications and breakfast at about 7. I started to feel unwell around 730, took an ondansetron for nausea, and vomited everything up at 8am. Ben was comically telling me not to vomit, but it wasn't something I could control. I agree with Shrek "Better out than in, I always say!" So now I can see my rad onc today and talk about something to stop me vomiting. At least I must have absorbed some of the Temodal - it taken 3.5 hours before everything came up. Maybe I'll have to take it two hours after food instead of 1 hour before, and also after an anti-emetic, in the afternoon, so I can have all my usual medications in the morning. I'll see what my rad onc says today.
Apart from the unair reality of getting two different cancers in one year, I am getting so many signs that something positive will come from this that I'm going to start a list.
7. on Saturday, I decided to finally get rid of the navy bathsheets that I have enjoyed since 1990, along with other old towels. I've held onto them because I haven't been able to find navy bathsheets that were as nice/ We packed them in the car, and went to the Sheridan outlet, where they had a brand new shipment of navy bath sheets, and a sale. So we got 4 beautiful new towels for $114.
8. the carpet in our walk-in wardrobe is wet. There must be a leak in a pipe coming down through the wall. Our insurance will not pay to repair the leaking pipe, but will pay to repair and repaint the wall, replace the carpet, and replace the shelves that will have to come off the wall to access the pipe. So I will get a freshly painted and floored WIR :)
9. I had a joyful time on Saturday giving away my old size 14 work clothes to my best friend from school. They fitted her perfectly, she loved them, and it gives her a classic wardrobe of things that I was only keeping because they were too good to give away to strangers, but holding on to the was making me feel bad because I didn't get any positive energy from wearing them
10. My niece Paige is now 19 and a size 12. I have filled a box with clothes for her. including a couple of suits that will be great for job interviews.
11. I feel as mentally alert as I did before children. For the last 11 years I have felt slightly mentally fuzzy and distractable, and blamed it on fatigue. Now that the tumours are gone, I feel so alert and clear, it's wonderful. I feel like my old self again. Uncle Vernon isn't stopping me from thinking clearly, he's not holding me back, or slowing me down.
In the clinical judgement literature, there's an adage "if you hear hoofbeats outside the window, it's more likely to be a horse than a zebra." Meaning that a high condition with a high baserate is more likely than one with a low baserate. However, if you live in Africa, there might be more zebras around than horses, so you need to know the population baserate before you make any guesses.
I realised yesterday that I'm a zebra. Lucky that black and white both suit my skin tone, thought I'm not keen on the stripes ;)
1. It really feels like the challenges that I've been facing have been scheduled by a compassionate being, who is giving me just one challenge at a time.
(i) I was worried about my breast in January last year, but it was fine. Dad passed away in February, and I didn't have to go through breast CA treatment while grieving him.
(ii) I had a wonderful and fulfilling year as CCN chair, and organised our national conference which had 250 registrants. While that was happening, my cousin Marita was dying from cervical cancer. She passed away the week of the conference, when everything was ready and set to go. It would have been much harder to do the conference if she had gone the week or two before.
(iii) I thought we'd made a good profit on the conference, but the APS says it was double that.
(iv) I wanted a year off work to recover from the emotional strain of last year. I got it through my diagnosis of early breast cancer
(v) Over the course of the year, I've been thinking I'd like to move from being a practicing clinician into advocacy for people with brain disorders. I go and get my own, but after my treatment for breast CA was over. It would have been harder to have been diagnosed with the latter while going though treatment for the former
(vi) we moved our bedroom downstairs 2 weeks before the brain tumour diagnosis. I was able to help Ben move all the furniture. I find it hard to do stairs at the moment
2. My brain tumours grew in remarkably good places. Aunt Petunia, the skinny occipital tumour, has just left me with a sparkly spot on the right hemifield (side of space), so I can still read, because we read from left to right. If she'd been on the left, it would be harder to read, as I'd have to adjust my line of sight so that I start reading in the right hemifield. Uncle Vernon, the fat and angry tumour, has only mildly curtailed my movements and sensation on my non-dominant left side. If he'd been growing on the left, my right hand would be affected, and I could have had changes in language comprehension that would have driven me mad.
3. the gardener I got to cut the roses off the front of our house before the new diagnosis is the son of my childhood next-door neighbours, and one of his workers is the son of a dear friend of Mum's. They will be able to look after the garden for us - it's like being cared for by family
4. the woman who delivers the food for the CCC was best friends with my cousin Stephanie at school, and is related to my cousin Marita
5. I had discussed home renovations with a builder who has a reputation for both excellence in restoring old houses, and for being a decent person. He came the next day, and said they can start work on painting the house, fixing the gutters, roof, and fascia, as soon as the weather is good.
6. after 3.5 years, I've finally worked out a simple and effective way to make our kitchen bigger that just involves extending the existing windows out by 1.5 metres. We'll do that after my treatment finishes in March
7. on Saturday, I decided to finally get rid of the navy bathsheets that I have enjoyed since 1990, along with other old towels. I've held onto them because I haven't been able to find navy bathsheets that were as nice/ We packed them in the car, and went to the Sheridan outlet, where they had a brand new shipment of navy bath sheets, and a sale. So we got 4 beautiful new towels for $114.
8. the carpet in our walk-in wardrobe is wet. There must be a leak in a pipe coming down through the wall. Our insurance will not pay to repair the leaking pipe, but will pay to repair and repaint the wall, replace the carpet, and replace the shelves that will have to come off the wall to access the pipe. So I will get a freshly painted and floored WIR :)
9. I had a joyful time on Saturday giving away my old size 14 work clothes to my best friend from school. They fitted her perfectly, she loved them, and it gives her a classic wardrobe of things that I was only keeping because they were too good to give away to strangers, but holding on to the was making me feel bad because I didn't get any positive energy from wearing them
10. My niece Paige is now 19 and a size 12. I have filled a box with clothes for her. including a couple of suits that will be great for job interviews.
11. I feel as mentally alert as I did before children. For the last 11 years I have felt slightly mentally fuzzy and distractable, and blamed it on fatigue. Now that the tumours are gone, I feel so alert and clear, it's wonderful. I feel like my old self again. Uncle Vernon isn't stopping me from thinking clearly, he's not holding me back, or slowing me down.
I have faith that this is part of some grand plan which has already brought our family together tighter. I've fallen in love with Ben again, and we're working well together as parents, and the kids are benefiting. I have faith that I will get through this, and that it will ultimately allow me to combine my experience as a neuropsychologist with my experience as a patient.
Accordingly, I need to have faith that discovering the CQ literature on my phone notes page today means that I'm not meant to take it. I must have pasted it there in Hobart, but I can't remember when. If I had been meant to take it, I would be on it already.
It's sometimes easy to slip out of the zen mind and start running around like a headless chook. I prefer the former.
Everything IS going to be well.
Everything IS well already.
This is just another challenge set up for me, to make me stronger and bette.
I'm going to get through this and love and live well for decades.
I realised yesterday that I'm a zebra. Lucky that black and white both suit my skin tone, thought I'm not keen on the stripes ;)
