I love this time of year! The daylight hours are slowly contracting, and the sun seems less intense than at the peak of summer. There is a cool breeze most days, which makes being outside utterly delightful. It reminds me of when I was a kid, and we spent days like this getting in the water, shrieking at the coldness, then getting out and warming off in the sun, either on the concrete at the local pool, or the sand or rocks at Bridport. Some of the best days were in Piper's River, where the water runs lazily in deep sections, or rushes over rocks, making waterfall-spa baths for those lucky enough to swim in it. I can't remember how to get to one spot as we only went there once, but it's probably directly underneath the cable for the final run Hollybank Treetops Adventures, which would make it feel less private and magical. The other spot was a deepish pool at a bend in the river, at the foot of a huge rock with a small cave underneath. Blackberries would dangle down to the water, for a sweet snack while treading water. It was probably only 5 feet deep, but still and somehow warmer than the shallow water, with smooth river pebbles on the base. It was on private land, now sold by the family who owned it. I used to dream about owning the farm in that valley, just so I could play in the river again.
I'm sitting up in bed writing this, after taking the kids to school by taxi, helping the cleaner, and walking the dog. Ben has to go to work early on Monday mornings, hence the taxi. Not being allowed to drive is getting to be a bit of a drag - it's been 5 months now, and while I wasn't up to driving for the first few months, I'm feeling a lot better. My neurologist said I need to get my visual fields checked - I need an eye checkup anyway.
Several people have said I'm looking much better in the past couple of weeks, which makes me wonder how bad I looked before? I was taken aback yesterday when Ben told our neighbour that I "nearly died" in January - I knew I was unwell, but close to death? Nobody told me. I asked Ben about it later and he said I was seriously ill, and could have died. I like those words better. Any one of us could die at any time, theoretically. We stay sane by denying that possibility. Acknowledging it could result in examining one's life, relationships, and use of time, and may result in changes. When we believe that we have all the time in the world, that death will come to us at 100, we keep on with our established habits and routines, living almost on autopilot, hopefully living good lives, but not always the kind of lives we want. There's a sense that we'll always have time to fix our problems, to achieve our dreams, to mend our broken relationships. Having a GBM is like having a guillotine set permanently above your neck. I don't know when, or even if, the blade is going to fall, so I ignore it, and spend each day trying to live as best as I can, resting, eating well, exercising, meditating, reading, talking to people, confronting the reality of parenthood after spending the day imagining obedient and happy children who stay in their beds all night long. It's frustrating that I still get tired, there's so much I want to do, so many people I want to see.
I've been typing for 25 minutes, and am feeling tired. Time for a nap, before Alexia and Christine arrive from Melbourne with their two wee babies. They're staying until Wednesday, it will be so nice to see them. I wish I could drive them around, give them a tour of Launceston, but it will be nice just to sit and talk about babies, and possibly even neuropsychology.
Sunday, 23 February 2014
Wednesday, 19 February 2014
breast MRI:No abnormalities detected. NAD.
NAD
I love those three letters!
After spending over an hour on the phone last week trying to book the MRI, I got a call at 840 on Tuesday morning saying that I would be having the scan in Hobart at 945 on Wednesday, and no, I couldn't have a later appointment because there were only two appointments that day, and the next one wouldn't be for two weeks. Sooooooo frustrating - it gave me just a few hours to organise accommodation for us, a kennel for the dog, notify the school that the boys needed to leave early, and pack a change of clothes for me and the boys.
Hobart is only 2.5 hours away from Launceston, but the thought of leaving early in the morning to race down there is daunting. So we left at 3pm on Tuesday, dropped Ginny off at Longford Park Kennels, took a backroad south through Cressy to Campbell Town, and arrived in Hobart at around 6. David played on his DS and asked how long it would take to get there about 100 times. Nathaniel lived up to his name's meaning (gift from God) and slept for half of the way.
The scenery is beautiful on the Midland Highway - I love the vast plains, the brooding mountains in the distance, the clouds, the sun-dusted grass, the tumbledown traces of early settlement. The trip was good for my soul, I've been feeling trapped in our house. Seeing the horizon makes me feel more optimistic, expansive, and acutely aware of how briefly we inhabit this marvellous planet. I try tarto teach the boys this appreciation, but they were too sleepy or distracted to notice.
After having a quick dinner at Fish in North Hobart, we visited my cousin Stephanie and her partner Matt. The boys had a lovely time patting Matt's old white cat, who is frail and skinny from an undiagnosed illness, but who still loves affection, and the boys loved her.
We stayed at the Customs House Hotel in Hobart - a lovely old sandstone building right down on the waterfront, huge room with 3 single and one double bed, breakfast included - we all slept like logs, and the boys want to go there again (as long as we can teleport to Hobart and avoid the long car trip)
Yesterday was a little stressful - they were running late for my 945 scan, and while I nearly fell asleep during the scan, they had put so much tape over the cannula that it bruised the sensitive and fragile skin inside my elbow when they ripped it off. We were told to go and have a coffee and wait for an hour or so in case I needed an ultrasound, which finally happened after 1. I had to see my neurologist at 230, so it felt like we were cutting it fine, and we didn't get time to have the leisurely lunch we'd fantasised about. Nathaniel didn't mind - he got the meatball Subway lunch that he'd been craving the whole trip.
The radiologist said that there were no areas of abnormal signal on the breast MRI, and she did an ultrasound, which showed nothing new. So she felt that a core biopsy wouldn't be necessary, and was going to talk to the radiologist in Launceston about it. I'm hoping to get a call from them soon - otherwise I'll be having a core biopsy at 1pm.
Breast MRI is more sensitive than mammography, but doesn't have good specificity. So if it detects an abnormality, it's very likely that there is something wrong, it just can't tell you what it is. If no abnormality is detected, then it's unlikely that there is an abnormality. But after all I've been through, I still want the other breast to come off. I know it's major surgery, and that it would be a shame to do it now that I'm starting to feel healthy again, but I'm not keen on living with the uncertainty about my breast - though I have that feeling about my whole body these days, wondering if any other cells are going to turn on me. I'm meditating, saying mantras, exercising, eating as well as I can with a limited appetite and a funny taste in my mouth - I have to trust that things will be okay.
The neurologist said the tingling in my tongue and jaw could be a medication side-effect, and that I am looking much better than I did last time he saw me. Quite a few people are saying that, and I'm feeling better too. Getting more walking in each day is helping, and I'm not needing to sleep so much during the day. I'm even feeling well enough to contemplate flying to the mainland to see a neuro-oncologist in Melbourne, and to Queensland for Easter. And I surprised myself on Monday by wondering when I should return to work - not that I have the energy or concentration to do it.
One step at a time. So good to be feeling better (almost normal, in fact), and to have the normal breast MRI result. Time for a nap, then a walk, then lunch, then maybe a biopsy (fingers crossed), then help the kids with their homework. Have a great day!
I love those three letters!
After spending over an hour on the phone last week trying to book the MRI, I got a call at 840 on Tuesday morning saying that I would be having the scan in Hobart at 945 on Wednesday, and no, I couldn't have a later appointment because there were only two appointments that day, and the next one wouldn't be for two weeks. Sooooooo frustrating - it gave me just a few hours to organise accommodation for us, a kennel for the dog, notify the school that the boys needed to leave early, and pack a change of clothes for me and the boys.
Hobart is only 2.5 hours away from Launceston, but the thought of leaving early in the morning to race down there is daunting. So we left at 3pm on Tuesday, dropped Ginny off at Longford Park Kennels, took a backroad south through Cressy to Campbell Town, and arrived in Hobart at around 6. David played on his DS and asked how long it would take to get there about 100 times. Nathaniel lived up to his name's meaning (gift from God) and slept for half of the way.
The scenery is beautiful on the Midland Highway - I love the vast plains, the brooding mountains in the distance, the clouds, the sun-dusted grass, the tumbledown traces of early settlement. The trip was good for my soul, I've been feeling trapped in our house. Seeing the horizon makes me feel more optimistic, expansive, and acutely aware of how briefly we inhabit this marvellous planet. I try tarto teach the boys this appreciation, but they were too sleepy or distracted to notice.
After having a quick dinner at Fish in North Hobart, we visited my cousin Stephanie and her partner Matt. The boys had a lovely time patting Matt's old white cat, who is frail and skinny from an undiagnosed illness, but who still loves affection, and the boys loved her.
We stayed at the Customs House Hotel in Hobart - a lovely old sandstone building right down on the waterfront, huge room with 3 single and one double bed, breakfast included - we all slept like logs, and the boys want to go there again (as long as we can teleport to Hobart and avoid the long car trip)
Yesterday was a little stressful - they were running late for my 945 scan, and while I nearly fell asleep during the scan, they had put so much tape over the cannula that it bruised the sensitive and fragile skin inside my elbow when they ripped it off. We were told to go and have a coffee and wait for an hour or so in case I needed an ultrasound, which finally happened after 1. I had to see my neurologist at 230, so it felt like we were cutting it fine, and we didn't get time to have the leisurely lunch we'd fantasised about. Nathaniel didn't mind - he got the meatball Subway lunch that he'd been craving the whole trip.
The radiologist said that there were no areas of abnormal signal on the breast MRI, and she did an ultrasound, which showed nothing new. So she felt that a core biopsy wouldn't be necessary, and was going to talk to the radiologist in Launceston about it. I'm hoping to get a call from them soon - otherwise I'll be having a core biopsy at 1pm.
Breast MRI is more sensitive than mammography, but doesn't have good specificity. So if it detects an abnormality, it's very likely that there is something wrong, it just can't tell you what it is. If no abnormality is detected, then it's unlikely that there is an abnormality. But after all I've been through, I still want the other breast to come off. I know it's major surgery, and that it would be a shame to do it now that I'm starting to feel healthy again, but I'm not keen on living with the uncertainty about my breast - though I have that feeling about my whole body these days, wondering if any other cells are going to turn on me. I'm meditating, saying mantras, exercising, eating as well as I can with a limited appetite and a funny taste in my mouth - I have to trust that things will be okay.
The neurologist said the tingling in my tongue and jaw could be a medication side-effect, and that I am looking much better than I did last time he saw me. Quite a few people are saying that, and I'm feeling better too. Getting more walking in each day is helping, and I'm not needing to sleep so much during the day. I'm even feeling well enough to contemplate flying to the mainland to see a neuro-oncologist in Melbourne, and to Queensland for Easter. And I surprised myself on Monday by wondering when I should return to work - not that I have the energy or concentration to do it.
One step at a time. So good to be feeling better (almost normal, in fact), and to have the normal breast MRI result. Time for a nap, then a walk, then lunch, then maybe a biopsy (fingers crossed), then help the kids with their homework. Have a great day!
Friday, 14 February 2014
stereotactic guided biopsy
I saw my breast surgeon today at 4pm, she was running late for my 215 appointment. Three people were ahead of me. It must be hard being a surgeon or oncologist, having to give people bad news. They don't show it when they come to the waiting room, pull a file, and call a name. (My hospital file is an inch thick now. I'm hoping I don't graduate to two folders, I'm hoping to keep things simple from now on.
I still haven't heard about the breast MRI appointment that I've been trying to arrange in Hobart. I've called 3 times, waited on hold 15-20 minutes each time, been cut off twice, and they still can't tell me if I have the appointment they talked about for next Wednesday. They keep saying they'll call me with a time. Maybe next week.
My surgeon seemed surprised when I said I had a copy of the mammogram/ultrasound report - I think she was ready to do the whole viewing scans and discussion thing. I hope I saved her 15 minutes and helped reduce the wait time for the people outside.
The report recommended a core biopsy to investigate the increased micro calcifications in the upper outer quadrant. II told her I'd be prepared to have the breast off without a biopsy, as we were thinking about doing a prophylactic mastectomy around now anyway, before we found the brain tumours.
She said it would be better to do a biopsy first, that there is little risk of seeding from breast cancers (as opposed to pancreatic and other cancers), and that a biopsy would tell us what we're dealing with, which would determine how quickly we need to act. Her explanation seemed to make sense, though I have vague memories of the last biopsy hurting like hell, tears running down my face, and the radiologist holding my hand. I'll try not to remember any more, lest it raise my stress levels, which won't help when they do they biopsy next Thursday afternoon.
There was book in the waiting room today, called Coping with the emotional impact of cancer. Browsing through it, it seems I've been using some good strategies (some of the time). It also gives lots of other strategies and advice that seemed helpful - I'm going to order a copy.
http://www.neilfiore.com/becomeactive.shtml
So how do I feel about this latest development? Acceptance that there's something that needs to be investigated, that something might need to be done. Resignation to a bit more pain (the biopsy), and getting that prophylactic mastectomy sooner than expected. Frustrated that my dramas aren't over yet, hope that everything will be okay. Determination to beat this, to continue to get healthy - I've been walking a bit further each day, and feeling stronger and more energised for it.
I'm more distressed by the effects of the ongoing stress on our family unit. Everyone's tired and irritable, resulting in frayed tempers, and the boys illustrating increasing skills in winding each other up. I've been doing so well in staying calm and diffusing arguments for the last few months, but I lost my temper badly yesterday, in response to everyone else losing their own. I felt like a hypocrite, and very guilty, but I'm not a saint with unlimited patience, and I can't bear to have the boys yelling at each other. I'm also frustrated because I can't find the iPad after hiding it somewhere sneaky in the middle of the night - this was several days ago. I'm pretty sure it's in the walk-in robe, but I may have to clean it out completely to find the iPad. I think we'll survive, though the boys mightn't agree. (they like to watch gaming videos on youtube while sitting on the toilet - the iPad hasn't fallen in yet. (touch wood)
I still haven't heard about the breast MRI appointment that I've been trying to arrange in Hobart. I've called 3 times, waited on hold 15-20 minutes each time, been cut off twice, and they still can't tell me if I have the appointment they talked about for next Wednesday. They keep saying they'll call me with a time. Maybe next week.
My surgeon seemed surprised when I said I had a copy of the mammogram/ultrasound report - I think she was ready to do the whole viewing scans and discussion thing. I hope I saved her 15 minutes and helped reduce the wait time for the people outside.
The report recommended a core biopsy to investigate the increased micro calcifications in the upper outer quadrant. II told her I'd be prepared to have the breast off without a biopsy, as we were thinking about doing a prophylactic mastectomy around now anyway, before we found the brain tumours.
She said it would be better to do a biopsy first, that there is little risk of seeding from breast cancers (as opposed to pancreatic and other cancers), and that a biopsy would tell us what we're dealing with, which would determine how quickly we need to act. Her explanation seemed to make sense, though I have vague memories of the last biopsy hurting like hell, tears running down my face, and the radiologist holding my hand. I'll try not to remember any more, lest it raise my stress levels, which won't help when they do they biopsy next Thursday afternoon.
There was book in the waiting room today, called Coping with the emotional impact of cancer. Browsing through it, it seems I've been using some good strategies (some of the time). It also gives lots of other strategies and advice that seemed helpful - I'm going to order a copy.
http://www.neilfiore.com/becomeactive.shtml
So how do I feel about this latest development? Acceptance that there's something that needs to be investigated, that something might need to be done. Resignation to a bit more pain (the biopsy), and getting that prophylactic mastectomy sooner than expected. Frustrated that my dramas aren't over yet, hope that everything will be okay. Determination to beat this, to continue to get healthy - I've been walking a bit further each day, and feeling stronger and more energised for it.
I'm more distressed by the effects of the ongoing stress on our family unit. Everyone's tired and irritable, resulting in frayed tempers, and the boys illustrating increasing skills in winding each other up. I've been doing so well in staying calm and diffusing arguments for the last few months, but I lost my temper badly yesterday, in response to everyone else losing their own. I felt like a hypocrite, and very guilty, but I'm not a saint with unlimited patience, and I can't bear to have the boys yelling at each other. I'm also frustrated because I can't find the iPad after hiding it somewhere sneaky in the middle of the night - this was several days ago. I'm pretty sure it's in the walk-in robe, but I may have to clean it out completely to find the iPad. I think we'll survive, though the boys mightn't agree. (they like to watch gaming videos on youtube while sitting on the toilet - the iPad hasn't fallen in yet. (touch wood)
Wednesday, 12 February 2014
Interesting article from a doctor with lung cancer
http://mobile.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?_r=1&referrer=
Tuesday, 11 February 2014
another breast biopsy?
Bugger.
I had a repeat mammogram and ultrasound a few weeks ago. The mammogram was reported as showing more micro calcifications than previously in the upper outer quadrant of my (still) fibrocystic, dense breast. An image-guided biopsy was recommended (very painful when it was done last year).
My rad onc recommended I have a breast MRI instead - I'm still waiting for the service in Hobart to get back to me with a time. My breast surgeon is away - I have an appointment with her on Friday - I'm not keen on another biopsy. There's some evidence that disturbing a tumour in this way can allow cancer cells to spread elsewhere in the body, like seeds dispersing through the circulatory system. If there's cancer there, that breast will just have to come off as well. Wish I'd done it prophylactically last year, only I was a little busy. If there is a tumour, I won't be able to have chemo, my bone marrow won't cope with that again, but I guess there's always radiotherapy (again). And all the alternative cures that have filled my inbox. "cure almost any cancer in 31 days at home". "how two simple foods can cure almost any cancer" - the last one is a mixture of flaxseed oil and quark or cottage cheese. The number of alternative remedies touted for cancer treatment is quite overwhelming, and sometimes the information is conflicting. Some say to avoid dairy foods completely, others say they're okay. So damned confusing.
Good news on my bloods, though. I saw my haematologist yesterday, and she said my bloods have improved to the point where I can have my gcsf injections every second day, rather than daily. A relief for my tummy, it's been getting jabbed every evening for the last few weeks. My infusaport needs to be flushed with saline solution every 6-8 weeks, so I'll get that done around the 8th of March. It's still tender to touch, but will hopefully be better by then.
I wonder - if I have a mastectomy on the right, where will they collect blood from? If they spare my lymph nodes, then I suppose the risk of lymphoedema won't be as great as on the left, where 14-15 nodes were removed. Not worth worrying about just now.
I'm so tired, I haven't slept well the last two nights, the boys have been disturbed in their sleep. I have to try not to sleep too much in the day, but also need to recognise my body's need for rest. Sleep also helps me to shut off my mind.
I'm going to prune some roses this morning, even though I'm not supposed to in case they prick me and cause my lymphedema to flare up - I'm sick of living in a medically-imposed nanny state. I just want to be normal again, so I'm going to start doing more normal things, even if I'm not supposed to. I'm sick of being inside all day and not seeing people. I'm heartily fed up with the fatigue, and how it makes me grumpy or miserable if I don't rest when it tells me to.
Sorry to have a whinge. I'd hoped that putting it down here would help me let go of it, but I'm feeling like having a good cry now, out of frustration, and feeling foolish for allowing myself to self-pity when I should have just had a nap, dreamt some dreams, and woken up feeling better. Sleep can be so therapeutic.
I had a repeat mammogram and ultrasound a few weeks ago. The mammogram was reported as showing more micro calcifications than previously in the upper outer quadrant of my (still) fibrocystic, dense breast. An image-guided biopsy was recommended (very painful when it was done last year).
My rad onc recommended I have a breast MRI instead - I'm still waiting for the service in Hobart to get back to me with a time. My breast surgeon is away - I have an appointment with her on Friday - I'm not keen on another biopsy. There's some evidence that disturbing a tumour in this way can allow cancer cells to spread elsewhere in the body, like seeds dispersing through the circulatory system. If there's cancer there, that breast will just have to come off as well. Wish I'd done it prophylactically last year, only I was a little busy. If there is a tumour, I won't be able to have chemo, my bone marrow won't cope with that again, but I guess there's always radiotherapy (again). And all the alternative cures that have filled my inbox. "cure almost any cancer in 31 days at home". "how two simple foods can cure almost any cancer" - the last one is a mixture of flaxseed oil and quark or cottage cheese. The number of alternative remedies touted for cancer treatment is quite overwhelming, and sometimes the information is conflicting. Some say to avoid dairy foods completely, others say they're okay. So damned confusing.
Good news on my bloods, though. I saw my haematologist yesterday, and she said my bloods have improved to the point where I can have my gcsf injections every second day, rather than daily. A relief for my tummy, it's been getting jabbed every evening for the last few weeks. My infusaport needs to be flushed with saline solution every 6-8 weeks, so I'll get that done around the 8th of March. It's still tender to touch, but will hopefully be better by then.
I wonder - if I have a mastectomy on the right, where will they collect blood from? If they spare my lymph nodes, then I suppose the risk of lymphoedema won't be as great as on the left, where 14-15 nodes were removed. Not worth worrying about just now.
I'm so tired, I haven't slept well the last two nights, the boys have been disturbed in their sleep. I have to try not to sleep too much in the day, but also need to recognise my body's need for rest. Sleep also helps me to shut off my mind.
I'm going to prune some roses this morning, even though I'm not supposed to in case they prick me and cause my lymphedema to flare up - I'm sick of living in a medically-imposed nanny state. I just want to be normal again, so I'm going to start doing more normal things, even if I'm not supposed to. I'm sick of being inside all day and not seeing people. I'm heartily fed up with the fatigue, and how it makes me grumpy or miserable if I don't rest when it tells me to.
Sorry to have a whinge. I'd hoped that putting it down here would help me let go of it, but I'm feeling like having a good cry now, out of frustration, and feeling foolish for allowing myself to self-pity when I should have just had a nap, dreamt some dreams, and woken up feeling better. Sleep can be so therapeutic.
Thursday, 6 February 2014
Improvements on scans
Good news:
"When compared directly with the 2012-12-30 scans, there appears to be slight reduction in the bulky of the rim enhancement in the occipital lesion, and possible slight reduction in bulk of the rim/ring enhancement in the right frontal lesion. No new lesions/satellite lesions identified"
Great news, in other words. The areas of enhancement in the December, that could have been new tumour growth, but might have just been post surgical and radiation scarring and vasculitic change, seem to have shrunk. I was tempted to take photos of all the scans from the screens this morning, but restricted mysedl to this one, simply because I can't recall seeing olfactory bulbs before (they're the two finger-like projections going up to the eyes (at the top of the scan).
The left occipital lesion is nice and small (the little black hole at the bottom right (left=right on brain scans), and there was hardly any ring enhancement (a white area around the blackness) on other images of the same area. The right parietal lesion isn't too big either, it possibly extends down to the temporal lobe (visible as the small white circle with a black centre just next to the long white branching bits on the left). I resisted the temptation to take more photos, I find it a little confronting to see images of lesions in my brain), and really only took this one because the olfactory bulbs looked so clear.. It was good to see very little oedema (swelling), no midline shift, and normal ventricles. So I just have to keep taking valcyclovir, master the ketogenic diet for cancer, exercise regularly, and keep thinking positive thoughts. This old brain may just get me through to 100 after all.
"When compared directly with the 2012-12-30 scans, there appears to be slight reduction in the bulky of the rim enhancement in the occipital lesion, and possible slight reduction in bulk of the rim/ring enhancement in the right frontal lesion. No new lesions/satellite lesions identified"
Great news, in other words. The areas of enhancement in the December, that could have been new tumour growth, but might have just been post surgical and radiation scarring and vasculitic change, seem to have shrunk. I was tempted to take photos of all the scans from the screens this morning, but restricted mysedl to this one, simply because I can't recall seeing olfactory bulbs before (they're the two finger-like projections going up to the eyes (at the top of the scan).
The left occipital lesion is nice and small (the little black hole at the bottom right (left=right on brain scans), and there was hardly any ring enhancement (a white area around the blackness) on other images of the same area. The right parietal lesion isn't too big either, it possibly extends down to the temporal lobe (visible as the small white circle with a black centre just next to the long white branching bits on the left). I resisted the temptation to take more photos, I find it a little confronting to see images of lesions in my brain), and really only took this one because the olfactory bulbs looked so clear.. It was good to see very little oedema (swelling), no midline shift, and normal ventricles. So I just have to keep taking valcyclovir, master the ketogenic diet for cancer, exercise regularly, and keep thinking positive thoughts. This old brain may just get me through to 100 after all.
Waiting for results
I had another MRI yesterday, just to check on the changed sensations in my face, mouth, and tongue.
Lying in the MRI machine, head comfortably held still by a squishy foam pillow and headphones, I felt sad for all the times I'd enthusiastically raved to patients about technology like MRI or CT scans, or even EEGs. Now that I've had a year of being injected, cannulated, infused, scanned, and anesthetised, I know that if I ever go back to seeing patients, I'm going to do it very differently. If I were to meet my former self, I'd find her almost insensitive in her enthusiasm about medical procedures (not that I was ever enthusiastic about infusions or needles of any sort). After a year of admissions, infections, and more procedures than I can remember, I feel profoundly tired, and almost intolerant of any more procedures. I've had enough. I will submit to more procedures when necessary, but I'd just like to have a break from it all. I've been good, couldn't my body start behaving itself?
I'm getting the results of the scan today at 1230, the appointment was originally for 3, but my doctor wanted to change it. I'm trying not to read anything into that. If it was urgent, they would have got me to come yesterday.
I'm going to ask for copies of the radiology reports today, I want something concrete to take home, I want to know what the radiologists who've viewed my scans think about them. I don't trust my own amateur readings, even if I've been looking at scans since 1990.
If there's regrowth of the tumour, it will hopefully be resectable, and we can use the gliolan to help the surgeon see as much of the damned thing as possible.
I just hope it's nothing. I think I deserve a false alarm by now. (deliberately ignoring the normal bone marrow biopsy - I'm thankful for that, just want another).
I was worried sick last night, it's so hard to block out the "what if's" when I see or think about David and Nathaniel. I don't want to disrupt their schooling, I don't want to worry them, I don't want to consider the prospect of not seeing them grow up, of being sick again. Life was so much more certain before all of this. I couldn't see any roadblocks in the future. All being well, there won't be. We'll go up to Queensland at Easter to see Caroline and her family, and we'll take the kids away on holidays every time we can. I'll start taking 2 half-hour walks each day, and seeing friends at least 2 days a week, and take the kids bike-riding and visiting friends more often.
Before my appointment today, I will lie down and meditate with the mantra that was recommended for me. It's called the Namgyalma Mantra, and the short form is Om dhrum soha om amrita ayur dade soha.
It's said to have infinite benefits, not just for the person saying it. You can read about it here: http://www.tonglen.oceandrop.org/NAMGYALMA%20MANTRA.htm
I'm finding the mantras a useful way to focus and feel like I'm doing something useful, and also a way to drift off to sleep without succumbing to negative ruminations, which are currently beating on the walls of my consciousness like a riotous mob. Time to stop writing and start meditating.
Lying in the MRI machine, head comfortably held still by a squishy foam pillow and headphones, I felt sad for all the times I'd enthusiastically raved to patients about technology like MRI or CT scans, or even EEGs. Now that I've had a year of being injected, cannulated, infused, scanned, and anesthetised, I know that if I ever go back to seeing patients, I'm going to do it very differently. If I were to meet my former self, I'd find her almost insensitive in her enthusiasm about medical procedures (not that I was ever enthusiastic about infusions or needles of any sort). After a year of admissions, infections, and more procedures than I can remember, I feel profoundly tired, and almost intolerant of any more procedures. I've had enough. I will submit to more procedures when necessary, but I'd just like to have a break from it all. I've been good, couldn't my body start behaving itself?
I'm getting the results of the scan today at 1230, the appointment was originally for 3, but my doctor wanted to change it. I'm trying not to read anything into that. If it was urgent, they would have got me to come yesterday.
I'm going to ask for copies of the radiology reports today, I want something concrete to take home, I want to know what the radiologists who've viewed my scans think about them. I don't trust my own amateur readings, even if I've been looking at scans since 1990.
If there's regrowth of the tumour, it will hopefully be resectable, and we can use the gliolan to help the surgeon see as much of the damned thing as possible.
I just hope it's nothing. I think I deserve a false alarm by now. (deliberately ignoring the normal bone marrow biopsy - I'm thankful for that, just want another).
I was worried sick last night, it's so hard to block out the "what if's" when I see or think about David and Nathaniel. I don't want to disrupt their schooling, I don't want to worry them, I don't want to consider the prospect of not seeing them grow up, of being sick again. Life was so much more certain before all of this. I couldn't see any roadblocks in the future. All being well, there won't be. We'll go up to Queensland at Easter to see Caroline and her family, and we'll take the kids away on holidays every time we can. I'll start taking 2 half-hour walks each day, and seeing friends at least 2 days a week, and take the kids bike-riding and visiting friends more often.
Before my appointment today, I will lie down and meditate with the mantra that was recommended for me. It's called the Namgyalma Mantra, and the short form is Om dhrum soha om amrita ayur dade soha.
It's said to have infinite benefits, not just for the person saying it. You can read about it here: http://www.tonglen.oceandrop.org/NAMGYALMA%20MANTRA.htm
I'm finding the mantras a useful way to focus and feel like I'm doing something useful, and also a way to drift off to sleep without succumbing to negative ruminations, which are currently beating on the walls of my consciousness like a riotous mob. Time to stop writing and start meditating.
Tuesday, 4 February 2014
more scans, dammit
I texted my rad onc today: "I've been getting an increased feeling of numbness in my lower face (jaw, cheeks) and am having trouble eating rough-textured food. I almost gag when swallowing it." When I saw him at 145, I also told him how my tongue feels a little numb, and my soft palate feels odd. So now I have an appointment for another MRI of my brain at 11 tomorrow. We had a good look at my last scans - there were areas of oedema (swelling) and increased density in the right parietal region, which might just be scarring from the surgery, but could also be tumour regrowth. God, I hope not. My poor old brain has coped remarkably well with two lots of surgery. The scotoma has nearly resolved, and I can walk without the forearm crutch most of the time now, I just take it for reassurance on longer walks. My poor body has been through so much in the past year, and I'm starting to feel healthy again. I'm even starting to declutter the house, one surface at a time. I don't want any more setbacks, I want to start having a normal life again.
To add insult to injury, I was mistaken in assuming that no news on my breast mammogram/ultrasound was good news. The right breast is very dense (just like last year) and there were possible micro calcifications (trouble signs) on the mammogram. The report suggested a biopsy. So my rad onc thinks I should ask my surgeon if I should travel to Hobart to have a MRI of the breast (they don't do them up here). I'm seeing the breast surgeon on Valentine's Day. If I need to go to Hobart to see the neurosurgeon, I may as well have the breast scan done then.
This is not the way I imagined this year panning out.
I won't hope it's a storm in a teacup, I haven't been lucky in the past with those kind of wishes. Apart from the bone marrow biopsy - no bad news there - so maybe my luck is changing?
It all seems so surreal, I can't think of anything I've done in this life to deserve these health problems - but there's no rhyme or reason to it. It's best if I stay calm and hold off worrying until I have something to worry about. The right breast was probably doomed anyway - I should have had a prophylactic mastectomy last year.
How am I feeling? part of me is silently repeating the F word and looking where to run and hide. Part of me is terrified that my health and life-expectancy are under threat again, just when the boys are back at school and in a routine. Part of me is looking at the blue sky and digging like mad to get out of the sandpit I've found myself in - I just don't know if it's shallow or deep, and I don't want to get stuck in it. I can't show my feelings to the kids, no need to worry them before we know anything. I pray that this is nothing, that I'm just being appropriately careful and that nothing will come of it. I wish there was an off button for my dramas - sleep and meditation are my best refuge.
I'll post an update as soon as I know anything
To add insult to injury, I was mistaken in assuming that no news on my breast mammogram/ultrasound was good news. The right breast is very dense (just like last year) and there were possible micro calcifications (trouble signs) on the mammogram. The report suggested a biopsy. So my rad onc thinks I should ask my surgeon if I should travel to Hobart to have a MRI of the breast (they don't do them up here). I'm seeing the breast surgeon on Valentine's Day. If I need to go to Hobart to see the neurosurgeon, I may as well have the breast scan done then.
This is not the way I imagined this year panning out.
I won't hope it's a storm in a teacup, I haven't been lucky in the past with those kind of wishes. Apart from the bone marrow biopsy - no bad news there - so maybe my luck is changing?
It all seems so surreal, I can't think of anything I've done in this life to deserve these health problems - but there's no rhyme or reason to it. It's best if I stay calm and hold off worrying until I have something to worry about. The right breast was probably doomed anyway - I should have had a prophylactic mastectomy last year.
How am I feeling? part of me is silently repeating the F word and looking where to run and hide. Part of me is terrified that my health and life-expectancy are under threat again, just when the boys are back at school and in a routine. Part of me is looking at the blue sky and digging like mad to get out of the sandpit I've found myself in - I just don't know if it's shallow or deep, and I don't want to get stuck in it. I can't show my feelings to the kids, no need to worry them before we know anything. I pray that this is nothing, that I'm just being appropriately careful and that nothing will come of it. I wish there was an off button for my dramas - sleep and meditation are my best refuge.
I'll post an update as soon as I know anything
Sunday, 2 February 2014
Back to school tomorrow
The holidays are over. I feel sad that I spent half of the time in hospital, but glad that I'm feeling better today. I slept really well last night, had a deep nap this afternoon, and managed to eat a full main meal at Mud (restaurant) tonight. Sadly, the evening was spoilt a little by having to wait until 730 for a table, and David being in a happy, jiggly, chatty mood - he just wouldn't stop tapping his feet and being silly. I love it when the boys are happy, I remember being happy, silly and irritating like that myself as a child, so it's obviously karmic payback to have to put up with it when I'm tired and irritable. Ben never had a childhood, or was perfectly behaved throughout, so his tolerance for such shenanigans is close to zero, and he quickly became more irritated than I was. I think we need to get out more and mix with other families, so that he can see our children are not abnormal. None of us need to be irritable with each other, and it upsets me a lot when Ben and the kids get upset with each other, it always has, it's just worse now that I have had a life-threatening illness.
I was feeling a bit despondent this morning. I realised it's because no-one has given me a clear plan of what to do next. I have a couple of appointments with specialists lined up, I know I'll need to have repeat brain scans at regular intervals, but apart from a vague plan to get fitter and to master the ketogenic diet for cancer, I really feel a bit adrift, after 12 months of having treatments lined up for me. I'll have a talk to some people about it this coming week, it would be good to get a sense of direction.
As far as I know, the surgery, chemo, and radiation for my brain tumours has been successful, based on the last MRI scan. Brain tumours don't usually send off secondary tumours to other parts of the body, they cause enough trouble in the limited space provided by the skull. Breast secondaries can pop up in several other organs, so fingers crossed that the CT and RT for that was effective. I had a bone scan during my last admission (to investigate lingering and unexplained pain in a rib), and my bones look clear, so that's reassuring.
I'm going to presume that I'm cancer-free, and engage in every activity I can to stay that way. Light to moderate exercise, the ketogenic anticancer diet, meditation, socialisation, and pleasant activities scheduling to stop me going mad from being home alone. I love our house, but begin to feel a little trapped being here all the time. I will ring up the builder who was going to paint it for us - maybe getting a project going will help me gain some energy, and distract me from my fatigue.
954pm, time to turn of the lights and sleep. Love and best wishes to you all.
I was feeling a bit despondent this morning. I realised it's because no-one has given me a clear plan of what to do next. I have a couple of appointments with specialists lined up, I know I'll need to have repeat brain scans at regular intervals, but apart from a vague plan to get fitter and to master the ketogenic diet for cancer, I really feel a bit adrift, after 12 months of having treatments lined up for me. I'll have a talk to some people about it this coming week, it would be good to get a sense of direction.
As far as I know, the surgery, chemo, and radiation for my brain tumours has been successful, based on the last MRI scan. Brain tumours don't usually send off secondary tumours to other parts of the body, they cause enough trouble in the limited space provided by the skull. Breast secondaries can pop up in several other organs, so fingers crossed that the CT and RT for that was effective. I had a bone scan during my last admission (to investigate lingering and unexplained pain in a rib), and my bones look clear, so that's reassuring.
I'm going to presume that I'm cancer-free, and engage in every activity I can to stay that way. Light to moderate exercise, the ketogenic anticancer diet, meditation, socialisation, and pleasant activities scheduling to stop me going mad from being home alone. I love our house, but begin to feel a little trapped being here all the time. I will ring up the builder who was going to paint it for us - maybe getting a project going will help me gain some energy, and distract me from my fatigue.
954pm, time to turn of the lights and sleep. Love and best wishes to you all.
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