It was two long weeks of knowing that my donated Enbrel was waiting for me at the hospital, numerous unreturned phone calls to the coordinator (and I missed the one call that did come in last week while I was in the shower) - and finally today I got the call that I'll be starting my clinical trial for Enbrel - tomorrow! (thanks to my husband who lit a fire under someone's behind this morning, he's great at doing that in a most respectful manner).
Thank goodness this is finally happening (I'm very optimistic that this stuff will help!) - I hit a low spot last night that I was unprepared for. My leg pain rose to a level that was close to intolerable - yet I haven't been able to take any stronger pain meds as to keep my body "clean" for the trial.
My poor neighbour came over to our porch last night to check on me (as she often does, I can't imagine a lovelier person to live next to!) and the tears let loose. I'd come on the porch to take my mind off the pain; watching the little kids play in the street always cheers me up. Something about her gentle smile opened the floodgates and she sat for almost an hour with me, encouraging me to vent all this pent-up frustration with the long delays, my pain and my general sense of being pretty useless to my family of late.
With this good news, I'm doing my Happy Dance - modified of course because I'm not supposed to jar, twist, jump on, run with or otherwise compromise my fragile thigh bone - but a Happy Dance all the same!
Wednesday, July 28, 2010
Thursday, July 22, 2010
Nothing New
I'm grateful that many of my readers have been checking in to the blog since my last post. I've been quiet on here because there's really nothing to tell!
Last week I met with my regular doctor in Toronto. He let me know that the supply of Enbrel arrived and was in the hands of the doc who through some pretty deft negotiations obtained the trial dose for me. Had to repeat a bunch of the baseline tests since a few months had passed since we first set out on this path. Normally I'm fairly patient in the long waits for blood tests, x-rays etc. but that day I seemed to have little tolerance - maybe all this waiting, testing and more waiting is getting to me.
Now we wait once again. That drug is sitting in a refrigerator somewhere in the bowels of Mt. Sinai hospital and I await the call that the doctor, my injection instructor, the paperwork etc. are all lined up and I can head into the hospital for my first dose.
Ring you darned phone, ring.
Update - 15 minutes after sending this post out, a call from the hospital came in! Playing telephone tag at the moment, but it's the coordinator of the clinical trial who would like to speak with me. Let's hope we can get things lined up for next week!
Last week I met with my regular doctor in Toronto. He let me know that the supply of Enbrel arrived and was in the hands of the doc who through some pretty deft negotiations obtained the trial dose for me. Had to repeat a bunch of the baseline tests since a few months had passed since we first set out on this path. Normally I'm fairly patient in the long waits for blood tests, x-rays etc. but that day I seemed to have little tolerance - maybe all this waiting, testing and more waiting is getting to me.
Now we wait once again. That drug is sitting in a refrigerator somewhere in the bowels of Mt. Sinai hospital and I await the call that the doctor, my injection instructor, the paperwork etc. are all lined up and I can head into the hospital for my first dose.
Ring you darned phone, ring.
Update - 15 minutes after sending this post out, a call from the hospital came in! Playing telephone tag at the moment, but it's the coordinator of the clinical trial who would like to speak with me. Let's hope we can get things lined up for next week!
Sunday, July 11, 2010
Small victories
In a world where it's mostly one step forward, two steps back I have to revel in every success, no matter how small and seemingly insignificant to most. My health continues to deteriorate slowly but I still to try to keep my chin up and remain optimistic. Tomorrow I'll find out when I can begin my three month trial with Enbrel (might be as early as this week!) and we have high hopes in this household that it will help with the pain, ease the pericarditis and let me feel somewhat normal more often.
It's been three months since I stopped taking steroids (huge success on its own there!) and I'm noticing that its effects are starting to wear off. I'm not as fatigued, my muscles ache less, have lost the "moonface" and have started to lose a bit of the twenty pounds I'd gained (down six, hurray!)
However, the leg and cardiac pain unfortunately continue to worsen. Weird thoughts enter my mind when I wake from the pain during the night. If I went into the bathroom, couldn't I just cut my leg off with the nail scissors? What if I just willed my heart to stop for a few hours, wouldn't that give it a much needed rest for a few hours? Nights are sometimes just a bit too frightening.
Back to the days - although I'm not allowed to do any aerobic exercises (and me being me, I've had to test that several times - and it does indeed send my heart pattern into a tailspin every time) I've been able in the last few weeks to get back to doing Wii Fit a few times a week. The gentle stuff; balance, strength, and yoga. Not only do I enjoy it, it does seem to be helping to tone up all the areas on me that seemed to have gone out of control while on steroids. I don't look six months pregnant anymore - those steroids seem to love settling into the belly!
I'll keep you updated on the Enbrel. Although we're thrilled that I've been given the opportunity to try it - there's a small part of me that jumps ahead to the end of the three month trial. What if this doesn't help, or god forbid - makes things even worse? What next? And I then have to bring my mind back to positive thoughts - this WILL help and I'll be able to get back to doing some of the things I love to do. Keeping everything crossed that is cross-able!
It's been three months since I stopped taking steroids (huge success on its own there!) and I'm noticing that its effects are starting to wear off. I'm not as fatigued, my muscles ache less, have lost the "moonface" and have started to lose a bit of the twenty pounds I'd gained (down six, hurray!)
However, the leg and cardiac pain unfortunately continue to worsen. Weird thoughts enter my mind when I wake from the pain during the night. If I went into the bathroom, couldn't I just cut my leg off with the nail scissors? What if I just willed my heart to stop for a few hours, wouldn't that give it a much needed rest for a few hours? Nights are sometimes just a bit too frightening.
Back to the days - although I'm not allowed to do any aerobic exercises (and me being me, I've had to test that several times - and it does indeed send my heart pattern into a tailspin every time) I've been able in the last few weeks to get back to doing Wii Fit a few times a week. The gentle stuff; balance, strength, and yoga. Not only do I enjoy it, it does seem to be helping to tone up all the areas on me that seemed to have gone out of control while on steroids. I don't look six months pregnant anymore - those steroids seem to love settling into the belly!
I'll keep you updated on the Enbrel. Although we're thrilled that I've been given the opportunity to try it - there's a small part of me that jumps ahead to the end of the three month trial. What if this doesn't help, or god forbid - makes things even worse? What next? And I then have to bring my mind back to positive thoughts - this WILL help and I'll be able to get back to doing some of the things I love to do. Keeping everything crossed that is cross-able!
Tuesday, July 6, 2010
Sharing Fantastic News!
Thanks to the considerable and determined efforts of my doctors, the drug company has agreed to donate a three month supply of Enbrel. This news came a few hours ago with a phone call from my specialist (who interrupted his vacation to follow up on the progress of the appeal).
Since hearing the news I've had a huge grin on my face - along with more than a few happy tears. Although I've been trying hard not to think about it, thoughts about how to finance this drug have dominated my thoughts of late and it's such a huge relief to hear the decision. And of course a much bigger relief that the answer was yes!
We don't know if Enbrel will help, I'll be the very first Erdheim Chester Disease patient to try it. However, I'm beyond grateful for the opportunity to see if it offers any improvement. If it works to slow down the progression of my illness, we'll need to look at avenues for financing of the drug beyond the next three months. But we can't worry about that right now, we just have to hope that this stuff helps!
I'll hear more next Monday when my doctor is back from vacation, I'll keep you updated. I know that many of you have offered your good wishes and prayers for good news. I know that they all helped, and I thank you!
Since hearing the news I've had a huge grin on my face - along with more than a few happy tears. Although I've been trying hard not to think about it, thoughts about how to finance this drug have dominated my thoughts of late and it's such a huge relief to hear the decision. And of course a much bigger relief that the answer was yes!
We don't know if Enbrel will help, I'll be the very first Erdheim Chester Disease patient to try it. However, I'm beyond grateful for the opportunity to see if it offers any improvement. If it works to slow down the progression of my illness, we'll need to look at avenues for financing of the drug beyond the next three months. But we can't worry about that right now, we just have to hope that this stuff helps!
I'll hear more next Monday when my doctor is back from vacation, I'll keep you updated. I know that many of you have offered your good wishes and prayers for good news. I know that they all helped, and I thank you!
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