I feel like I'm spending months inside of much shorter time frames. Now that I've written that it doesn't seem to make much sense; but there's too much going on to have logically fit into the last two weeks and that's the only way I can describe it.
Two weeks ago I got a long awaited call from the hospital. The researcher had decided, that no - I was not going to be taking Kineret. For a reason that floored me, he told my doctor that the shots are too painful and patients tend not to comply for that reason. Just one sec here, has a word I've said even been heard? What about short term pain for possible long term gain? Doesn't he know that I'm one tough cookie?
I went to bed that night completely dejected. After all these long months of lobbying, the answer wasn't at all what I had expected. Despite taking my nightly sleeping pill (my leg and chest pain has gotten a bit much at nights lately, and it helps to take the edge off so I can get to sleep) I found myself staring at the clock at 4 a.m. not having slept a wink. I quietly crept downstairs to my office and spent the next two hours composing a letter to my doctors. A rational, unemotional plea to reconsider. What other options do I have right now? So many of the other drugs used for ECD can further complicate my cardiac condition so I really don't have much else to try.
When my husband woke up a few hours later I asked him to read the letter to make sure I was as lucid in the wee hours as I though I had been. He encouraged me in fact to put a bit more emotion in my words, to get across how devastating this decision felt.
A few hours after emailing my letter I got a call from my doctor. He'd spoken to the researcher and Kineret was back on the table. We're still waiting to hear if this is going to happen, but at least we don't have a definite no to deal with. And now it's back to being about funding.
Coincidentally, the Toronto Star published two articles in the last few days that really sum up our struggle to get access to off-label use of expensive drugs.
http://www.healthzone.ca/health/newsfeatures/article/894062
http://www.thestar.com/news/canada/article/894576--8-ontario-patients-in-need-of-500-000-a-year-drug-therapy?bn=1
Should I feel some comfort in knowing that I'm not alone in this battle?
Lots more to share about the last two weeks, but I'll save that for another day. But on the drug funding front, we're still waiting.
Tuesday, November 23, 2010
Saturday, November 6, 2010
We're Still Giggling!
Despite the somewhat more somber mood in our household, we're still trying to hang on to our sense of humour.
A few days ago, my daughter got a call from her Dad's house (she splits her time between two households), asking if there was any particular reason why her school uniform was strewn across the front lawn. Turns out she had stuffed her clothes into her school bag as she ran out to the driveway where her driving instructor was waiting (he was going to drop her off at our house afterward and she needed her uniform for the next school day). They'd fallen out as she swung her bag over her shoulder. Easily solved, my husband picked up the clothes that evening. No worse for their public airing.
The next morning I felt well enough to drive my daughter to school (she otherwise takes two buses which don't always connect as scheduled due to lots of local road construction). We leave pretty early and I didn't feel like showering and dressing for the half hour round trip. The sweatpants I'd been wearing the previous evening were handy so I pulled them over my pj bottoms so the neighbours wouldn't be able to see that I hadn't bothered to dress properly.
My daughter got in the drivers seat, and I climbed in beside her (btw - she's getting to be quite a good driver, keeping our fingers crossed that she passes her next exam to allow her to drive on her own).
An uneventful trip, and I was soon back on our street. What the heck is in the driveway? Can't be...
I hurried over to the side of the drive where I'd climbed into the car 30 minutes earlier. A wee bit embarrassing - but it was my panties. In plain view.
They must have slipped out of the leg of the sweatpants, I hadn't separated my laundry in my exhausted state the night before.
How many of my neighbours saw, and how many are wondering what kind of drugs I'm on these days? And why can't the women in our family keep track of their clothes?
We truly are still finding lots to laugh about. And my latest comedic indulgence? "Modern Family". Did you catch the episode about Gloria's accent and mispronunciations? That sure brought back memories of growing up with a mother with a strong German accent. I can't tell you how many times my friends would look at me with alarm, clearing misunderstanding what my Mom had just said.
I don't think my husband and daughter can understand just how much it helps when they get me laughing. And they do, every single day (especially when I keep inadvertently providing the fodder!)
A few days ago, my daughter got a call from her Dad's house (she splits her time between two households), asking if there was any particular reason why her school uniform was strewn across the front lawn. Turns out she had stuffed her clothes into her school bag as she ran out to the driveway where her driving instructor was waiting (he was going to drop her off at our house afterward and she needed her uniform for the next school day). They'd fallen out as she swung her bag over her shoulder. Easily solved, my husband picked up the clothes that evening. No worse for their public airing.
The next morning I felt well enough to drive my daughter to school (she otherwise takes two buses which don't always connect as scheduled due to lots of local road construction). We leave pretty early and I didn't feel like showering and dressing for the half hour round trip. The sweatpants I'd been wearing the previous evening were handy so I pulled them over my pj bottoms so the neighbours wouldn't be able to see that I hadn't bothered to dress properly.
My daughter got in the drivers seat, and I climbed in beside her (btw - she's getting to be quite a good driver, keeping our fingers crossed that she passes her next exam to allow her to drive on her own).
An uneventful trip, and I was soon back on our street. What the heck is in the driveway? Can't be...
I hurried over to the side of the drive where I'd climbed into the car 30 minutes earlier. A wee bit embarrassing - but it was my panties. In plain view.
They must have slipped out of the leg of the sweatpants, I hadn't separated my laundry in my exhausted state the night before.
How many of my neighbours saw, and how many are wondering what kind of drugs I'm on these days? And why can't the women in our family keep track of their clothes?
We truly are still finding lots to laugh about. And my latest comedic indulgence? "Modern Family". Did you catch the episode about Gloria's accent and mispronunciations? That sure brought back memories of growing up with a mother with a strong German accent. I can't tell you how many times my friends would look at me with alarm, clearing misunderstanding what my Mom had just said.
I don't think my husband and daughter can understand just how much it helps when they get me laughing. And they do, every single day (especially when I keep inadvertently providing the fodder!)
Thursday, November 4, 2010
Just Don't Get Me Started
This afternoon I had an annual appointment with my local GP, I don't think I've mentioned him before in a post. One of these female check-up type thingies, not my favourite things to do but gotta suck it up and get it done. Or do I?
I'm at that age when a few extra tests are requisitioned at the annual check-up. None are terribly pleasant; parts get squished, prodded, palpated and swabbed. But lately I wonder why I'm getting them done; if I'm being honest with myself I believe that it's highly unlikely that if cancer was detected that I'd do anything about it at this stage. I realize I might raise an eyebrow or two out there, but really - I'm already dealing with a serious illness that has no cure. Would I subject myself to more surgery/treatments than what I'm already prepared (or not prepared) to do to deal with the ECD? And really, could anyone have that much bad luck with their health?
Dr. A. has been getting updates on my condition from the hospital in Toronto. As he started our conversation he already had tears in his eyes, confirming that what he'd read was not good news. I'm not sure how I feel about his reaction. On one hand I recognize that he's a kind, compassionate man; isn't that what we'd all want in a doctor? On the other hand, his reaction brings out something in me that I don't recognize. It's not self-pity; after all it was me reassuring him at the end of my appointment that I felt quite optimistic about the next drug trial.
I'm used to emotional outpourings when sharing details of my illness with others. It's not something I spend a lot of time talking about, but I try to be forthright when people care enough to ask about the progression of my illness.
Today's appointment? I think I can best describe my reaction as fear. I try so hard not to be overwhelmed by my illness but his tears make me feel like I ought to be more frightened.
I know my GP's heart is in the right place, but it makes me need my husband to hurry home for one of his wonderful hugs that make the rest of the world disappear for just a little while.
I'm at that age when a few extra tests are requisitioned at the annual check-up. None are terribly pleasant; parts get squished, prodded, palpated and swabbed. But lately I wonder why I'm getting them done; if I'm being honest with myself I believe that it's highly unlikely that if cancer was detected that I'd do anything about it at this stage. I realize I might raise an eyebrow or two out there, but really - I'm already dealing with a serious illness that has no cure. Would I subject myself to more surgery/treatments than what I'm already prepared (or not prepared) to do to deal with the ECD? And really, could anyone have that much bad luck with their health?
Dr. A. has been getting updates on my condition from the hospital in Toronto. As he started our conversation he already had tears in his eyes, confirming that what he'd read was not good news. I'm not sure how I feel about his reaction. On one hand I recognize that he's a kind, compassionate man; isn't that what we'd all want in a doctor? On the other hand, his reaction brings out something in me that I don't recognize. It's not self-pity; after all it was me reassuring him at the end of my appointment that I felt quite optimistic about the next drug trial.
I'm used to emotional outpourings when sharing details of my illness with others. It's not something I spend a lot of time talking about, but I try to be forthright when people care enough to ask about the progression of my illness.
Today's appointment? I think I can best describe my reaction as fear. I try so hard not to be overwhelmed by my illness but his tears make me feel like I ought to be more frightened.
I know my GP's heart is in the right place, but it makes me need my husband to hurry home for one of his wonderful hugs that make the rest of the world disappear for just a little while.
Sunday, October 31, 2010
The View from the Bottom Step
I'm raising my white flag.
I sit at the bottom step looking up at where I came from. I didn't arrive here with a thud. Nor did I arrive at the bottom. as I would have expected with a slow, careful descension; step by step.
It's taken a few weeks to get here, feeling as if I've been tripping my way down the stairs clawing to grab onto a rail, a step or by some miracle a tremendous gust of wind to nudge me back up a step or two.
The quick decline in my health has been horrifying to me. I've tried to keep some normalcy; cooking a couple of meals a week, keeping up with the laundry, even driving my daughter to school once in a while. At the very best I've even been able to do two photo sessions with clients.
At its worst, I realize that this is all slipping away from me very quickly right now. Most days are spent in bed lately, trying to keep my mind off of the pain that seems to be settling into other bones with a burn that at times is nearly intolerable. Trying to save up enough energy to do a few simple tasks each day. Trying to ignore that my pacemaker kicks in all day long to correct a heartbeat that refuses to keep steady. Trying to keep the relentless fever under control. Watching so much slip away from me.
October was especially hard to deal with. It's the month that as a photographer I would have been out in nearly every kind of weather either photographing families for their holiday pictures, or capturing the fall colours in their glory for the galleries that sell my work. Although most of them have dropped me in the last year because I've not been able to honour my obligations to regularly provide new images.
Last night my doctor called (yes, a Saturday night) to check on me. We're back in to see him tomorrow and by the sounds of it he's ready to try to help me pull out the big guns. Enough of this being stoic and trying to handle the pain and discomfort with a brave face. It's time to admit that I need more help than perhaps I've been letting on.
Within minutes after the doctor's call, I received some very sad news. One of the members of our ECD support group passed on this week. Only 33, leaving behind a young daughter. My heart goes out to her loving, and beloved family.
This really is an evil disease.
I sit at the bottom step looking up at where I came from. I didn't arrive here with a thud. Nor did I arrive at the bottom. as I would have expected with a slow, careful descension; step by step.
It's taken a few weeks to get here, feeling as if I've been tripping my way down the stairs clawing to grab onto a rail, a step or by some miracle a tremendous gust of wind to nudge me back up a step or two.
The quick decline in my health has been horrifying to me. I've tried to keep some normalcy; cooking a couple of meals a week, keeping up with the laundry, even driving my daughter to school once in a while. At the very best I've even been able to do two photo sessions with clients.
At its worst, I realize that this is all slipping away from me very quickly right now. Most days are spent in bed lately, trying to keep my mind off of the pain that seems to be settling into other bones with a burn that at times is nearly intolerable. Trying to save up enough energy to do a few simple tasks each day. Trying to ignore that my pacemaker kicks in all day long to correct a heartbeat that refuses to keep steady. Trying to keep the relentless fever under control. Watching so much slip away from me.
October was especially hard to deal with. It's the month that as a photographer I would have been out in nearly every kind of weather either photographing families for their holiday pictures, or capturing the fall colours in their glory for the galleries that sell my work. Although most of them have dropped me in the last year because I've not been able to honour my obligations to regularly provide new images.
Last night my doctor called (yes, a Saturday night) to check on me. We're back in to see him tomorrow and by the sounds of it he's ready to try to help me pull out the big guns. Enough of this being stoic and trying to handle the pain and discomfort with a brave face. It's time to admit that I need more help than perhaps I've been letting on.
Within minutes after the doctor's call, I received some very sad news. One of the members of our ECD support group passed on this week. Only 33, leaving behind a young daughter. My heart goes out to her loving, and beloved family.
This really is an evil disease.
Friday, October 8, 2010
The Mirror is Not My Friend
However, my husband and daughter most definitely are.
I'm looking pretty haggard these days. Lack of sleep and everything else going nuts in my body have me hardly recognizing myself these days. I've lost the steroid chipmunk cheeks and about half of the steroid weight so far - but all I see are sunken eyes and a rather unhealthy looking tint to my skin. Yesterday I came across a photo of myself taken about two years ago and I seem to have aged at least ten years since then.
But every single day, both of my sweeties tell me that I look beautiful. I'm grateful that they can see past what I'm seeing in the mirror. Or they've both become great fibbers :-)
One upside - every year I dress up as a witch at Halloween to dish out the treats; this year I won't need much make-up to look convincing!
I'm looking pretty haggard these days. Lack of sleep and everything else going nuts in my body have me hardly recognizing myself these days. I've lost the steroid chipmunk cheeks and about half of the steroid weight so far - but all I see are sunken eyes and a rather unhealthy looking tint to my skin. Yesterday I came across a photo of myself taken about two years ago and I seem to have aged at least ten years since then.
But every single day, both of my sweeties tell me that I look beautiful. I'm grateful that they can see past what I'm seeing in the mirror. Or they've both become great fibbers :-)
One upside - every year I dress up as a witch at Halloween to dish out the treats; this year I won't need much make-up to look convincing!
Wednesday, October 6, 2010
Not a No
Yesterday was hospital day. It was the longest I'd gone between appointments in two years, and I'd had high hopes that there would have been a significant move forward towards the next treatment.
No such luck, but in all it was still a pretty good meeting with my lead doctor. We're in agreement that my health is declining and that we have to come up with some sort of treatment plan. My wish to try Kineret hasn't been shot down, it's still being considered - but we're going to take a different path. I'll be meeting with the doctor/researcher who obtained the Enbrel donation for me - and have him assess me in person and decide on the next step together.
He is however, renowned in his field and lectures around the world frequently - so getting in to see him might take awhile. That's the hard part to swallow - as I get weaker and the "good days" become less frequent it's sometimes difficult to be optimistic about the road ahead. I can't help but hope that the Kineret (or something else that is prescribed) just might be the miracle treatment that improves my quality of life. So I'm not wallowing, right? Still looking forward. Most days.
Yesterday's appointment felt far less clinical than usual. It was an honest discussion about how frustrating it is to treat an illness about which so little is known, and how treatment options have so far been hit and miss with the small number of patients around the world.
I felt that we were skating just above the admission that we seem to dip towards at some appointments. Unless I'm careless crossing a busy street, this illness is what will end my life. My doctor has a way of asking questions of the two of us (my husband is almost always with me at these appointments) to see where I'm at mentally with all of this. Actually where all three of us are at; my husband and daughter suffer through this just as much as I do in their own way.
Yesterday I felt emotionally strong and I hoped it came across that way to my doctor. I sometimes think about the seven stages of grief - and believe that I tend to bounce quiet a bit between them. Up a step, down two and back up again on the ladder. Yet I think that he could read between the lines; the only change to my prescriptions was to make sure that I get outside for ten minutes a day. Drive (or get driven as is the case most days now) to a park, sit on a bench, or walk if I'm up to it - but get outside of the house.
I've learned much about myself in the last two years. I'm as human as everyone else. And I have to forgive myself for not always being Miss Optimistic and Strong. Bad things happen and I'm not weak for sometimes thinking that I got a raw deal in all of this.
No such luck, but in all it was still a pretty good meeting with my lead doctor. We're in agreement that my health is declining and that we have to come up with some sort of treatment plan. My wish to try Kineret hasn't been shot down, it's still being considered - but we're going to take a different path. I'll be meeting with the doctor/researcher who obtained the Enbrel donation for me - and have him assess me in person and decide on the next step together.
He is however, renowned in his field and lectures around the world frequently - so getting in to see him might take awhile. That's the hard part to swallow - as I get weaker and the "good days" become less frequent it's sometimes difficult to be optimistic about the road ahead. I can't help but hope that the Kineret (or something else that is prescribed) just might be the miracle treatment that improves my quality of life. So I'm not wallowing, right? Still looking forward. Most days.
Yesterday's appointment felt far less clinical than usual. It was an honest discussion about how frustrating it is to treat an illness about which so little is known, and how treatment options have so far been hit and miss with the small number of patients around the world.
I felt that we were skating just above the admission that we seem to dip towards at some appointments. Unless I'm careless crossing a busy street, this illness is what will end my life. My doctor has a way of asking questions of the two of us (my husband is almost always with me at these appointments) to see where I'm at mentally with all of this. Actually where all three of us are at; my husband and daughter suffer through this just as much as I do in their own way.
Yesterday I felt emotionally strong and I hoped it came across that way to my doctor. I sometimes think about the seven stages of grief - and believe that I tend to bounce quiet a bit between them. Up a step, down two and back up again on the ladder. Yet I think that he could read between the lines; the only change to my prescriptions was to make sure that I get outside for ten minutes a day. Drive (or get driven as is the case most days now) to a park, sit on a bench, or walk if I'm up to it - but get outside of the house.
I've learned much about myself in the last two years. I'm as human as everyone else. And I have to forgive myself for not always being Miss Optimistic and Strong. Bad things happen and I'm not weak for sometimes thinking that I got a raw deal in all of this.
Saturday, September 11, 2010
After Ten Long, Long Days
Sometimes I think I should have called this blog "Up the Creek Without a Paddle".
It's been a trying time over the last while. Today is the first day in a week and a half that I've not had a fever or significant chest pain. I'm not sure what my body is trying to tell me but I'm really not getting the message. Well, maybe that's not entirely true.
Eleven days ago I felt well enough to go to my hospital appointment on my own on the train. My husband dropped me off at the station so that I didn't have to deal with that long walk from the end of the parking lot. A pleasant ride, lots of families going into the city for the day to visit the CNE (the annual end of summer Canadian National Exhibition). From there, the streetcar to the hospital. Lots of Torontonians detest the streetcar; they're slow, noisy and can be unbearably hot in the summer if you happen to land on an older un-airconditioned car. But I love it. I've always loved this city, and the streetcar shows me a slice of this city that many who rely solely on their cars miss altogether.
My doctor and I discussed our revised plan of action after the disappointing Enbrel trial. We decided to let me have a break from the "more serious" drugs and let me stay on maintenance meds for a month to let my system calm down. I had sent him some info on Kineret (a drug I mentioned in a post early in the year); a study has produced some promising results. The clinical trial documented the use of Kineret for two ECD patients in Europe. Yes, I said two. That's what happens with extremely rare diseases, but I'll take whatever hope I can grab onto. Kineret was initially dismissed by my team of doctors but I'm keeping my fingers crossed that we can start this whole approval/insurance application/beg for a drug donation circus all over again.
After my appointment I still felt fairly energized and decided to again tackle the streetcar, this time with a pit stop for some people watching on Yonge Street. A visit to a favourite store, and then feeling still pretty awake (rare for me!) I decided to walk down to the train station.
I hadn't had that much fun in a long time. I felt normal. Years ago I worked in the financial district, facing these crowds everyday. Although I love my new career, at that moment I missed the normalcy of that life so far away. Busy, productive, somewhat predictable. Travelling a lot to some fascinating cities (and some really not so fascinating!). I regularly updated my five year plan, and it all seemed feasible - and for a few years afterwards it was.
I came home with a big smile. No one who'd seen my that day in the city would have guessed that I'm ill, maybe noticed that I walk a bit awkwardly and slower than I used to. Maybe she has a twisted ankle? Sore from an extra tough workout at the gym?
The next morning I awoke with a fever and excruciating chest pain. And I don't use that word lightly. And for the next ten days it didn't let up except for a few brief hours every few days. No appetite, the most I could stomach was a few crackers to take with my pills. After a week I called my doctor who asked me to double all my meds, and add one more to try to get on top of this flare of pericarditis. He suggested that I might have picked up a virus on my trip to the hospital/downtown - after all my immune system isn't very strong right now. Maybe I just exerted myself far too much on my downtown trip and my heart was rebelling.
I've been feeling defeated, that I will pay each time for a small bit of freedom. It just seems too coincidental that every time I do something a bit more strenuous that a virus is the cause.
And I'm simply amazed that despite the daily gymnastics going on my chest, that my heart still keeps going. One truly amazing example of the resiliency of the human body. For how long?
Today I'm eating again, working a bit in my office and even managed a quick trip to the grocery store. These better days are essential to my mental health and I treasure them.
It's been a trying time over the last while. Today is the first day in a week and a half that I've not had a fever or significant chest pain. I'm not sure what my body is trying to tell me but I'm really not getting the message. Well, maybe that's not entirely true.
Eleven days ago I felt well enough to go to my hospital appointment on my own on the train. My husband dropped me off at the station so that I didn't have to deal with that long walk from the end of the parking lot. A pleasant ride, lots of families going into the city for the day to visit the CNE (the annual end of summer Canadian National Exhibition). From there, the streetcar to the hospital. Lots of Torontonians detest the streetcar; they're slow, noisy and can be unbearably hot in the summer if you happen to land on an older un-airconditioned car. But I love it. I've always loved this city, and the streetcar shows me a slice of this city that many who rely solely on their cars miss altogether.
My doctor and I discussed our revised plan of action after the disappointing Enbrel trial. We decided to let me have a break from the "more serious" drugs and let me stay on maintenance meds for a month to let my system calm down. I had sent him some info on Kineret (a drug I mentioned in a post early in the year); a study has produced some promising results. The clinical trial documented the use of Kineret for two ECD patients in Europe. Yes, I said two. That's what happens with extremely rare diseases, but I'll take whatever hope I can grab onto. Kineret was initially dismissed by my team of doctors but I'm keeping my fingers crossed that we can start this whole approval/insurance application/beg for a drug donation circus all over again.
After my appointment I still felt fairly energized and decided to again tackle the streetcar, this time with a pit stop for some people watching on Yonge Street. A visit to a favourite store, and then feeling still pretty awake (rare for me!) I decided to walk down to the train station.
I hadn't had that much fun in a long time. I felt normal. Years ago I worked in the financial district, facing these crowds everyday. Although I love my new career, at that moment I missed the normalcy of that life so far away. Busy, productive, somewhat predictable. Travelling a lot to some fascinating cities (and some really not so fascinating!). I regularly updated my five year plan, and it all seemed feasible - and for a few years afterwards it was.
I came home with a big smile. No one who'd seen my that day in the city would have guessed that I'm ill, maybe noticed that I walk a bit awkwardly and slower than I used to. Maybe she has a twisted ankle? Sore from an extra tough workout at the gym?
The next morning I awoke with a fever and excruciating chest pain. And I don't use that word lightly. And for the next ten days it didn't let up except for a few brief hours every few days. No appetite, the most I could stomach was a few crackers to take with my pills. After a week I called my doctor who asked me to double all my meds, and add one more to try to get on top of this flare of pericarditis. He suggested that I might have picked up a virus on my trip to the hospital/downtown - after all my immune system isn't very strong right now. Maybe I just exerted myself far too much on my downtown trip and my heart was rebelling.
I've been feeling defeated, that I will pay each time for a small bit of freedom. It just seems too coincidental that every time I do something a bit more strenuous that a virus is the cause.
And I'm simply amazed that despite the daily gymnastics going on my chest, that my heart still keeps going. One truly amazing example of the resiliency of the human body. For how long?
Today I'm eating again, working a bit in my office and even managed a quick trip to the grocery store. These better days are essential to my mental health and I treasure them.
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