Hi everyone - sad to say, Janet is once again in hospital. The vomiting has been hard to control, but she is now stable again thanks to a combination of medications. Vertigo is still a big challenge, and she is waiting to hear what the oncologists have up their sleeves on that front. Meanwhile, the care calendar is being activated once again and I will be posting regular updates there. The link to the calendar is www.carecalendar.org , calendar ID is 139962, security code 18
Regards,
Penny
Monday, April 1, 2013
Friday, March 22, 2013
About face
Haven't been out in the world much what with all the hospital visits and bed rest of 2013. Wonder if folks will recognize me when next we meet especially given my weight loss. So I offer up this recent photo to help jog the memory of anyone who might care. Haven't mastered photos on the new iPad yet which is why this image is sideways. On the other hand, these days I feel best when lying down so the photo orientation is quite appropriate.
Monday, March 18, 2013
In the woods
Just when I thought things were calming down and settling into their new normal, I seem to have experienced another set back. So I'm not entirely out of the woods yet, even after spending most of 2013 either in hospital or in bed.
Yesterday's morning vertigo episode should have been a clue that things were about to get worse rather than better.
A couple hours after dinner last night, I felt the need to attempt a BM which would have been my first since coming home (yeah, I know, too much information). Perhaps I was trying too hard, or just sitting up too long. No matter. When I returned to the living room and was slowly lowering myself onto the sofa where I had been lying, I was suddenly overcome by a violent bout of vertigo. Actually asked Phil if we were experiencing an earthquake. Everything started moving at once, all in different directions. All I could do is hold onto a pillow and pray that the sensation didn't last long. Fortunately, the whole episode only lasted less than a minute.
Shortly after this, Penny and Jon stopped by for a visit. Their arrival coincided with my calling the BC Cancer Agency on-call nurse to get her advice. Since nobody answered the call right away, Penny suggested I take the other half of the dexamethasone pill (was only taking half once a day). Did so a few minutes after she and Jon departed. Note to self: bread or crackers are a better buffer to take with meds than pitted prunes. I returned the pill within a few minutes of taking it. Called the Cancer Agency again.
Dr on call at the Cancer Agency felt Phil's description of what I was doing when the vertigo hit (threw head back, eyes rolled briefly back, etc.) sounded like a seizure. Never had one before so am more inclined to think just bad vertigo. To me, it felt like a combo of an earthquake, after-effect of being on the world's fastest merry-go-round, and being at sea during a tornado. Or at least what I imagine such a combination to feel like. Whatever, the Dr told me to go immediately to St Mary's ER for assessment. Attending Dr also felt it could have been a seizure, but for the short duration of the episode, my recall of the situation, and the fact that I was conscience throughout the event. So ER gave me some saline to ensure I wasn't dehydrated and also gave some of my anti-nausea meds via IV. Felt more stable within minutes of all that starting. Attending Dr also changed one of my anti-nausea meds to an oral med that dissolves under the tongue which I'm able to deal with far easier than anything that needs to be swallowed. Got home at 1:30am this morning and went immediately to sleep. Moving very slowly today, which seems to be helping a lot.
Medical oncologist called this am to follow-up from ER doctor's report of last night. She has doubled the dexamethasone so I am now taking it twice a day. If that isn't enough, I'm to double it again. In the meantime, she is working with Dr Wadge and St Mary's ACU team to get the chemo going as it is thought to help calm the site in my cerebellum that is causing the vertigo and nausea.
While I am a big fan of Alfred Hitchcock movies, and did enjoy his thriller Vertigo, I do not see any of this winding up in a screenplay any time soon. Mind you, given the popularity of so-called reality TV shows, my day-to-day travails might be better suited to the smaller screen. So move over Honey Boo Boo.
Big challenge for me: move slowly, move head and eyes as little as possible. Of course, all this will greatly affect my one-time plan of auditioning for Dancing with the Stars. Unless, that is, I can persuade the judges to consider a slow-mo version of my classic funky chicken dance as my audition offering.
Yesterday's morning vertigo episode should have been a clue that things were about to get worse rather than better.
A couple hours after dinner last night, I felt the need to attempt a BM which would have been my first since coming home (yeah, I know, too much information). Perhaps I was trying too hard, or just sitting up too long. No matter. When I returned to the living room and was slowly lowering myself onto the sofa where I had been lying, I was suddenly overcome by a violent bout of vertigo. Actually asked Phil if we were experiencing an earthquake. Everything started moving at once, all in different directions. All I could do is hold onto a pillow and pray that the sensation didn't last long. Fortunately, the whole episode only lasted less than a minute.
Shortly after this, Penny and Jon stopped by for a visit. Their arrival coincided with my calling the BC Cancer Agency on-call nurse to get her advice. Since nobody answered the call right away, Penny suggested I take the other half of the dexamethasone pill (was only taking half once a day). Did so a few minutes after she and Jon departed. Note to self: bread or crackers are a better buffer to take with meds than pitted prunes. I returned the pill within a few minutes of taking it. Called the Cancer Agency again.
Dr on call at the Cancer Agency felt Phil's description of what I was doing when the vertigo hit (threw head back, eyes rolled briefly back, etc.) sounded like a seizure. Never had one before so am more inclined to think just bad vertigo. To me, it felt like a combo of an earthquake, after-effect of being on the world's fastest merry-go-round, and being at sea during a tornado. Or at least what I imagine such a combination to feel like. Whatever, the Dr told me to go immediately to St Mary's ER for assessment. Attending Dr also felt it could have been a seizure, but for the short duration of the episode, my recall of the situation, and the fact that I was conscience throughout the event. So ER gave me some saline to ensure I wasn't dehydrated and also gave some of my anti-nausea meds via IV. Felt more stable within minutes of all that starting. Attending Dr also changed one of my anti-nausea meds to an oral med that dissolves under the tongue which I'm able to deal with far easier than anything that needs to be swallowed. Got home at 1:30am this morning and went immediately to sleep. Moving very slowly today, which seems to be helping a lot.
Medical oncologist called this am to follow-up from ER doctor's report of last night. She has doubled the dexamethasone so I am now taking it twice a day. If that isn't enough, I'm to double it again. In the meantime, she is working with Dr Wadge and St Mary's ACU team to get the chemo going as it is thought to help calm the site in my cerebellum that is causing the vertigo and nausea.
While I am a big fan of Alfred Hitchcock movies, and did enjoy his thriller Vertigo, I do not see any of this winding up in a screenplay any time soon. Mind you, given the popularity of so-called reality TV shows, my day-to-day travails might be better suited to the smaller screen. So move over Honey Boo Boo.
Big challenge for me: move slowly, move head and eyes as little as possible. Of course, all this will greatly affect my one-time plan of auditioning for Dancing with the Stars. Unless, that is, I can persuade the judges to consider a slow-mo version of my classic funky chicken dance as my audition offering.
Sunday, March 17, 2013
In a spin
Since returning to home on Thurs night, I continue to feel "off". Am attemptinig to keep my head and eyes as still as possible, but it is very difficult to do espcially when talking to someone. As a result, nausea continues to be an issue although very little vomiting has resulted. Thank you, God. Even so, this new focus on stillness is quite the challenge. For example, slept in until 10am today. When I tried to get up - only lifted my head from the pillow - the room went into a major spin. Laying back down with my eyes closed was the only remedy, and relief was a good five minutes in arriving. Sudddenly my brain flips into "music mode" and I can't get the Blood, Sweat and Tears/David Clayton Thomas hit Spinning Wheel out of my mind. At least it's a song I like. Subsequent images of being on a playground-style merry-go-round turning in time to the music didn't help re comfort level, however.
If only I could somehow channel all this spinning energy into making yarn. I'm sure some very interesting art yarn would be produced if I could figure out how to make it work.
If only I could somehow channel all this spinning energy into making yarn. I'm sure some very interesting art yarn would be produced if I could figure out how to make it work.
Saturday, March 16, 2013
Medical Update
Kudos to Sechelt medical team for all their efforts re getting the recent vomiting and nausea under control.
My GP quickly realized my oncologist might be better equipped to tackle the problem. Unfortunately, his letter was temporary "lost" (Shaw email issue - lots of folks affected), so transfer to BCCA was delayed. Thanks to the transport ambulance crew, I made the trip without too much incident.
When I first arrived at BCCA I continued to have all medication administered via IV, as I had at St Mary's. That's because I still couldn't keep anything down, not even a sip of water. In addition to getting several bags of saline to counter severe dehydration, I was also getting calcium and magnesium as those electrolytes were also greatly depleted. In fact, magnesium level was so low I had uncontrollable shaking especially in my hands. Even Gravol was administered via IV. Gradually, as things began to settle, I was able to take meds orally - a huge step re prepping to return home.
Within hours of my arrival at the BCCA I was sent to radiology for an MRI. This was my first ever test of that sort. Lots of CT scans, but never an MRI before. The claustrophobia issue wasn't nearly as bad as I had been led to believe, and the whole experience passed quickly without incident.
The MRI was able to show some things not seen on x-rays or CT scans. Most notable was "something" in the cerebellum, near the top of the back of my neck. Unfortunately, the radiologist and neurologist weren't able to determine via a simple reading of the scan result what that "something" might be, so a spinal tap was ordered.
If you, gentle reader, have never experienced a spinal tap, suffice to say it is not nearly as much fun as watching the cult movie "This is Spinal Tap". Not only are there no drummers who died under odd circumstances, including spontaneous human combustion, a "bizarre gardening accident" and, in at least one case, choking to death on the vomit of person(s) unknown, but the procedure isn't a fraction of the fun the film is.
The initial ST (aka lumbar puncture) was done while I lay on my side in my hospital bed. The resident performing the procedure began by digging his fingernail between two vertebrates in an effort to determine whether there was enough space for the "tap" needle to be inserted. Having decided the first attempt was a non-starter, he moved on to the adjacent bones. Try as he might, however, the spinal fluid couldn't be accessed let alone drained. Needle placement was apparently the issue. Two days later, I found myself rolling into radiology for another ST, this time with the aid of fluoroscopy. Success at last - and painlessly. Fortunately, the fluid was clear of both tumour markers and metastasises.
That test allowed the BCCA team, including my oncologist, to conclude the "something" at the back of my head is the source of all my recent grief. Unlike the tumour that was removed from my frontal lobe in Nov (and the smaller tumour that was left in the area for the radiation to deal with), this tumour is somehow different in composition so can be treated by means other than surgery. I think the chemo I'm due to get is Doxorubicin, a nasty red liquid that has to be administered very, very slowly via syringe because if there is any damage to the vein and the drug leaks out of it, it will essentially kill any tissue it comes in contact with.
The area of the brain affected by this new finding is the part responsible for balance and orientation. It also has some bearing on vision which accounts for the loss of the peripheral vision in my right eye.
At present I don't have a treatment schedule other than an appointment for a follow-up MRI on April 18. Still trying to get vomiting completely under control first. Did have a wee episode shortly after arriving home. Palliative nurse popped by and in the course of our conversation I mentioned ongoing ache in area of sacrum and top of right femur. She told me to take a low dose Hydromorphone (Dilaudid) - which I already had on hand - on a regular basis to increase my comfort level. Soooo, as soon as she left I took one of the pills. Without food. Bad move. And hour later I was vomiting again. Fortunately, it seems to be a one-off event. Either that or sleep is still my best medicine - went to bed last night at 5pm, awoke this am at 8am.
For now, I'm trying to keep my head and eyes as still as I can as sudden changes in position are a major trigger for nausea. So is bright light as it enhances any "floaters" from my right eye.
So, in addition to building me the most amazing access ramp at the front of my house, Phil is waiting on me hand and foot. Yup, I'm one very spoiled puppy. Gosh but he makes good soup and cookies.
My GP quickly realized my oncologist might be better equipped to tackle the problem. Unfortunately, his letter was temporary "lost" (Shaw email issue - lots of folks affected), so transfer to BCCA was delayed. Thanks to the transport ambulance crew, I made the trip without too much incident.
When I first arrived at BCCA I continued to have all medication administered via IV, as I had at St Mary's. That's because I still couldn't keep anything down, not even a sip of water. In addition to getting several bags of saline to counter severe dehydration, I was also getting calcium and magnesium as those electrolytes were also greatly depleted. In fact, magnesium level was so low I had uncontrollable shaking especially in my hands. Even Gravol was administered via IV. Gradually, as things began to settle, I was able to take meds orally - a huge step re prepping to return home.
Within hours of my arrival at the BCCA I was sent to radiology for an MRI. This was my first ever test of that sort. Lots of CT scans, but never an MRI before. The claustrophobia issue wasn't nearly as bad as I had been led to believe, and the whole experience passed quickly without incident.
The MRI was able to show some things not seen on x-rays or CT scans. Most notable was "something" in the cerebellum, near the top of the back of my neck. Unfortunately, the radiologist and neurologist weren't able to determine via a simple reading of the scan result what that "something" might be, so a spinal tap was ordered.
If you, gentle reader, have never experienced a spinal tap, suffice to say it is not nearly as much fun as watching the cult movie "This is Spinal Tap". Not only are there no drummers who died under odd circumstances, including spontaneous human combustion, a "bizarre gardening accident" and, in at least one case, choking to death on the vomit of person(s) unknown, but the procedure isn't a fraction of the fun the film is.
The initial ST (aka lumbar puncture) was done while I lay on my side in my hospital bed. The resident performing the procedure began by digging his fingernail between two vertebrates in an effort to determine whether there was enough space for the "tap" needle to be inserted. Having decided the first attempt was a non-starter, he moved on to the adjacent bones. Try as he might, however, the spinal fluid couldn't be accessed let alone drained. Needle placement was apparently the issue. Two days later, I found myself rolling into radiology for another ST, this time with the aid of fluoroscopy. Success at last - and painlessly. Fortunately, the fluid was clear of both tumour markers and metastasises.
That test allowed the BCCA team, including my oncologist, to conclude the "something" at the back of my head is the source of all my recent grief. Unlike the tumour that was removed from my frontal lobe in Nov (and the smaller tumour that was left in the area for the radiation to deal with), this tumour is somehow different in composition so can be treated by means other than surgery. I think the chemo I'm due to get is Doxorubicin, a nasty red liquid that has to be administered very, very slowly via syringe because if there is any damage to the vein and the drug leaks out of it, it will essentially kill any tissue it comes in contact with.
The area of the brain affected by this new finding is the part responsible for balance and orientation. It also has some bearing on vision which accounts for the loss of the peripheral vision in my right eye.
At present I don't have a treatment schedule other than an appointment for a follow-up MRI on April 18. Still trying to get vomiting completely under control first. Did have a wee episode shortly after arriving home. Palliative nurse popped by and in the course of our conversation I mentioned ongoing ache in area of sacrum and top of right femur. She told me to take a low dose Hydromorphone (Dilaudid) - which I already had on hand - on a regular basis to increase my comfort level. Soooo, as soon as she left I took one of the pills. Without food. Bad move. And hour later I was vomiting again. Fortunately, it seems to be a one-off event. Either that or sleep is still my best medicine - went to bed last night at 5pm, awoke this am at 8am.
For now, I'm trying to keep my head and eyes as still as I can as sudden changes in position are a major trigger for nausea. So is bright light as it enhances any "floaters" from my right eye.
So, in addition to building me the most amazing access ramp at the front of my house, Phil is waiting on me hand and foot. Yup, I'm one very spoiled puppy. Gosh but he makes good soup and cookies.
Happy at Home
Ah, the comforts of home. After almost six weeks of enjoying the fine hospitality of St. Mary's Hospital and the BC Cancer Agency, it's a nice - indeed, welcome - change.
To all who visited during this trying time, my heart-felt gratitude. Amazing how a smiling face and word re what is happening "outside" helped take my mind off my little cares. It was so nice to have a chance to visit at length with so many I don't get as much time to talk to in other circumstances. Thanks, too, to those who sent cards and flowers or who phoned. Your thoughts and prayers were also most welcomed and appreciated. Apologies to anyone who sent email messages - didn't have wifi access so only read the notes after I got home.
As Penny noted in her earlier post, nausea and vomiting have been ongoing issues for me since Christmas. The problem became more acute after Jan 1. Suspect the most obvious side effect to anyone else would be weight loss - when I was weighed at St Mary's just prior to transferring to BCCA, I was down 40 lbs from my pre-Christmas weight. Yes, I had found a very effective weight-loss method, but I'm sure Weight Watchers and Jenny Craig are much more pleasant alternatives.
It was only a couple of days ago that I realized 2013 is the second year in a row that I started counting down the calendar by investigating a country's medical system. Not something I intend to continue on for another, let me tell you. In any case, a closer look at my local medical system has revealed a few things that have much amused my little mind.
Anyone familiar with the Sunshine Coast will be aware that St Mary's is about to open its much-anticipated new wing. No doubt that was the reason I was constantly moved during my stay. All tolled, I was in seven different rooms, some (such as the post op recovery area) were make-shift arrangements while other days found me in a private room. Suspect the "tour" was given so I will not only appreciate the privacy of the individual rooms in the new wing (should I need to check those out), but also a means of ensuring that I feel I am getting the most for my healthcare dollars.
Highlight of St Mary's visit for fibre fans: the tree outside the window of my last room played host to a massive collection of lichen. The texture of the lichen was like Old Man's Beard but, rather than hanging like a series of threads, this stuff clustered into balls. I first noticed the tree in the fading light of dusk and mistook it for a green apple tree. Clever dyers who had a bag or two handy for harvesting.
Remember I was admited for uncontrolled nausea and vomiting? Well, the hospital's catering firm, Sodexo, ensured that activity continued after my admission. The very smell of any hot food on offer was enough to send my tummy tumbling, so I was restricted to cold stuff. The "kitchen" soon deduced that egg salad sandwiches were one of the few things I could tolerate, so decided that would be all that was offered for four straight days. Many thanks to Penny, Roz, and others who visited with alternative edibles in hand - I'm sure your donations did much to aid my recovery. The BCCA uses a different firm (Morrison) and I had absolutely no trouble swallowing anything served there. Bonus: an hour before lunch or dinner was served, I was asked which items on the "menu" I might like to have! Healthier choices and far less food waste at the BCCA than St Mary's, let me tell you.
On a related topic, I was amused by the nurses' excitement over the slightest BM. Really. Had my first after a good week, and when I reported the info to the night nurse in response to a query, she responded with an enthusiastic, "I heard!". Who knew those in the nursing profession prefer to forego other topics of conversation amongst themselves if there is something to report about the BM activity of one of their patients. Honestly. The topic garnered more excitement among the ranks than news that I had walked a full city block and back (with aid of my walker) after such a long time in bed, or word that the conclave in Rome had elected a new pope, or that Marc Garneau was putting his support behind Justin Trudeau.
To all who visited during this trying time, my heart-felt gratitude. Amazing how a smiling face and word re what is happening "outside" helped take my mind off my little cares. It was so nice to have a chance to visit at length with so many I don't get as much time to talk to in other circumstances. Thanks, too, to those who sent cards and flowers or who phoned. Your thoughts and prayers were also most welcomed and appreciated. Apologies to anyone who sent email messages - didn't have wifi access so only read the notes after I got home.
As Penny noted in her earlier post, nausea and vomiting have been ongoing issues for me since Christmas. The problem became more acute after Jan 1. Suspect the most obvious side effect to anyone else would be weight loss - when I was weighed at St Mary's just prior to transferring to BCCA, I was down 40 lbs from my pre-Christmas weight. Yes, I had found a very effective weight-loss method, but I'm sure Weight Watchers and Jenny Craig are much more pleasant alternatives.
It was only a couple of days ago that I realized 2013 is the second year in a row that I started counting down the calendar by investigating a country's medical system. Not something I intend to continue on for another, let me tell you. In any case, a closer look at my local medical system has revealed a few things that have much amused my little mind.
Anyone familiar with the Sunshine Coast will be aware that St Mary's is about to open its much-anticipated new wing. No doubt that was the reason I was constantly moved during my stay. All tolled, I was in seven different rooms, some (such as the post op recovery area) were make-shift arrangements while other days found me in a private room. Suspect the "tour" was given so I will not only appreciate the privacy of the individual rooms in the new wing (should I need to check those out), but also a means of ensuring that I feel I am getting the most for my healthcare dollars.
Highlight of St Mary's visit for fibre fans: the tree outside the window of my last room played host to a massive collection of lichen. The texture of the lichen was like Old Man's Beard but, rather than hanging like a series of threads, this stuff clustered into balls. I first noticed the tree in the fading light of dusk and mistook it for a green apple tree. Clever dyers who had a bag or two handy for harvesting.
Remember I was admited for uncontrolled nausea and vomiting? Well, the hospital's catering firm, Sodexo, ensured that activity continued after my admission. The very smell of any hot food on offer was enough to send my tummy tumbling, so I was restricted to cold stuff. The "kitchen" soon deduced that egg salad sandwiches were one of the few things I could tolerate, so decided that would be all that was offered for four straight days. Many thanks to Penny, Roz, and others who visited with alternative edibles in hand - I'm sure your donations did much to aid my recovery. The BCCA uses a different firm (Morrison) and I had absolutely no trouble swallowing anything served there. Bonus: an hour before lunch or dinner was served, I was asked which items on the "menu" I might like to have! Healthier choices and far less food waste at the BCCA than St Mary's, let me tell you.
On a related topic, I was amused by the nurses' excitement over the slightest BM. Really. Had my first after a good week, and when I reported the info to the night nurse in response to a query, she responded with an enthusiastic, "I heard!". Who knew those in the nursing profession prefer to forego other topics of conversation amongst themselves if there is something to report about the BM activity of one of their patients. Honestly. The topic garnered more excitement among the ranks than news that I had walked a full city block and back (with aid of my walker) after such a long time in bed, or word that the conclave in Rome had elected a new pope, or that Marc Garneau was putting his support behind Justin Trudeau.
Monday, February 11, 2013
Going Through a Bad Patch - Penny posting
Hi everyone - in case you haven't heard, Janet has been experiencing ongoing nausea & vomiting to the point that she has been hospitalized. The cause is uncertain - perhaps a side effect of her brain surgery - but any slight movement seems to set it off. As well, she is having more pain in her sacrum and hip which is contributing to her discomfort. The plan is to get these things under control so that Janet can return home, and to use this time to organize the support that she will need when that happens.
A "care calendar" has been started to make it easy to communicate the ways in which Janet could use some support (right now, that is spending quiet time at her bedside) as well as to provide updates. If you are available to help out and would like to access the calendar, please let me know by email at worsemother@gmail.com . Know that the calendar is under construction and being updated for the next few days only as the needs will change.
I know that Janet would want you to know that, until last night, she was in a holding space where the call bell was the hand operated variety more commonly used to summon a desk clerk at a hotel!
I will blog as Janet requests. For the unembellished facts, do check the calendar.
Penny
A "care calendar" has been started to make it easy to communicate the ways in which Janet could use some support (right now, that is spending quiet time at her bedside) as well as to provide updates. If you are available to help out and would like to access the calendar, please let me know by email at worsemother@gmail.com . Know that the calendar is under construction and being updated for the next few days only as the needs will change.
I know that Janet would want you to know that, until last night, she was in a holding space where the call bell was the hand operated variety more commonly used to summon a desk clerk at a hotel!
I will blog as Janet requests. For the unembellished facts, do check the calendar.
Penny
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