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.
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