Aa
Crumbling
It really hit me today, 10 months into TX, cowering on the side of the NYS thruway on my way to my monthly gastro appointment, rear passenger side tire flat as a pancake, just how much of an invalid I've become.
I didn't have a cell phone; it's one of the one of the many things I've forgotten to keep up with; the contract lapsed months ago.
I didn't have the strength to even attempt to change the tire myself. In my pre-TX days, i could have eventually figured it out. it might have taken me all friggin' day but I would have done it.
Steamy Indian summer morning, car parked next to a lush grove of apple trees with plump ripe fruit dangling: I got as far as emptying the trunk to pull out the spare and then started trembling, felt nauseous, couldn't breathe. Raised the trunk and leaned against the rear bumper, hoping I'd spot a good samaritan or a state cop whizzing by. In the back of my mind scenes from my niece's death, 5 years ago, on the side of a Florida interstate, trying to troubleshoot engine problems, mowed down by an out-of-control tractor-trailer . . . I wasn't THERE but I was there . . .
I was in luck. A k-9 unit pulled up, took my info and relayed it to the state troopers but no one showed up.
Joe from PA came by half an hour later and changed the tire in less than 5 minutes, refusing to take the $40 I tried to press on him.
"You've redeemed my faith in human nature," I told him
By this time I was close to passing out; didn't want to drive 60 miles back to my cottage on a spare, got off the next exit and bought a couple of new tires at a local Mavis, drove home, called the gastro telling them why I hadn't shown up, forced myself to go to the local Walmart to buy one of those prepaid phones coz with my luck, when i try to make the trip again tomorrow I'll have a similar incident requiring access to AAA and will once again be stuck.
I'm wiped out. One friggin little crisis and I'm burned, wondering how I'm gonna manage the trip tomorrow. Wondering how I managed to get back home safely today. Wondering if I'll ever again be able to handle such irritating but routine daily crises. . .
Feeling weak, scared, realizing I have next to zero strength left . . .
Very depressed.
Just had to ramble. Thanks.
wyntre
I didn't have a cell phone; it's one of the one of the many things I've forgotten to keep up with; the contract lapsed months ago.
I didn't have the strength to even attempt to change the tire myself. In my pre-TX days, i could have eventually figured it out. it might have taken me all friggin' day but I would have done it.
Steamy Indian summer morning, car parked next to a lush grove of apple trees with plump ripe fruit dangling: I got as far as emptying the trunk to pull out the spare and then started trembling, felt nauseous, couldn't breathe. Raised the trunk and leaned against the rear bumper, hoping I'd spot a good samaritan or a state cop whizzing by. In the back of my mind scenes from my niece's death, 5 years ago, on the side of a Florida interstate, trying to troubleshoot engine problems, mowed down by an out-of-control tractor-trailer . . . I wasn't THERE but I was there . . .
I was in luck. A k-9 unit pulled up, took my info and relayed it to the state troopers but no one showed up.
Joe from PA came by half an hour later and changed the tire in less than 5 minutes, refusing to take the $40 I tried to press on him.
"You've redeemed my faith in human nature," I told him
By this time I was close to passing out; didn't want to drive 60 miles back to my cottage on a spare, got off the next exit and bought a couple of new tires at a local Mavis, drove home, called the gastro telling them why I hadn't shown up, forced myself to go to the local Walmart to buy one of those prepaid phones coz with my luck, when i try to make the trip again tomorrow I'll have a similar incident requiring access to AAA and will once again be stuck.
I'm wiped out. One friggin little crisis and I'm burned, wondering how I'm gonna manage the trip tomorrow. Wondering how I managed to get back home safely today. Wondering if I'll ever again be able to handle such irritating but routine daily crises. . .
Feeling weak, scared, realizing I have next to zero strength left . . .
Very depressed.
Just had to ramble. Thanks.
wyntre
My blood counts aren't that bad. It is just that my doc goes entirely by the book. "Reduce riba at a hgb of 10...", but my nurse forgot to notify him that it went down to 9.5. Sometimes you gotta be lucky.
Kids are back. I am yelling at them most of the time. Dog is lucky to still be away. My eating habits are totally out of order, I often skip dinner, but today I ate steak at both 10 am and 5 pm. My body shrieked after protein!
I am glad to hear you seem to be doing better after week 40.
Zazza
Kids are back. I am yelling at them most of the time. Dog is lucky to still be away. My eating habits are totally out of order, I often skip dinner, but today I ate steak at both 10 am and 5 pm. My body shrieked after protein!
I am glad to hear you seem to be doing better after week 40.
Zazza
What's up with your blood counts?
is it the HgB or the ANC?
My WBC and ANC tanked the first month of TX going down to less than 25% of pre TX levels. Dr. put me on twice monthly neupogen and while those counts still haven't risen to more than 50% of their original level, at least it's kept them under control.
The flat tire thing was EASIER somehow than waiting on line at HOME DEPOT!
Maybe coz i knew I'd be up the creek if I didn't handle it. It took every ounce of self-control and restraint I had.
The notion of being stuck there for hours, 60 miles from home and NOT getting back to the cottage was worse than dealing with car repair it but it took my last reserves of energy to get through it.
And, true to form, while I didn't meltdown on the spot, as Jools put it, everyone on Forum got to witness the print version last night! *LOL*
How are you doing today?
wyn
is it the HgB or the ANC?
My WBC and ANC tanked the first month of TX going down to less than 25% of pre TX levels. Dr. put me on twice monthly neupogen and while those counts still haven't risen to more than 50% of their original level, at least it's kept them under control.
The flat tire thing was EASIER somehow than waiting on line at HOME DEPOT!
Maybe coz i knew I'd be up the creek if I didn't handle it. It took every ounce of self-control and restraint I had.
The notion of being stuck there for hours, 60 miles from home and NOT getting back to the cottage was worse than dealing with car repair it but it took my last reserves of energy to get through it.
And, true to form, while I didn't meltdown on the spot, as Jools put it, everyone on Forum got to witness the print version last night! *LOL*
How are you doing today?
wyn
Oh, you did good, presenting those studies to your doc and getting your 72 weeks approved! It feels good to know that the road ahead of us is approved and "all" we have to do is walk down it til we reach the end.
My doc has been a little edgy about my blood counts lately, so I was afraid he would back off from his promise to let me extend. But now with the prescription for the remaining meds in my posession, nothing will stop me.
I can't even imagine the ordeal you went through with the flat tire. I have problem standing in line, waiting for my turn, in the grocery store. I feel like telling everyone, or shouting really: "Don't you understand what it is like to be on ribavirin! Let me through!"
My doc has been a little edgy about my blood counts lately, so I was afraid he would back off from his promise to let me extend. But now with the prescription for the remaining meds in my posession, nothing will stop me.
I can't even imagine the ordeal you went through with the flat tire. I have problem standing in line, waiting for my turn, in the grocery store. I feel like telling everyone, or shouting really: "Don't you understand what it is like to be on ribavirin! Let me through!"
I'm glad the trip went better today...hang in there...you have made it so far!!!..i totally understand about the meltdowns, and feeling so unable to do anything...i hate that part of these meds...but you/we are strong!!!!....be blessed....and know we are pulling for you!!!!
Pigeon,
Awwww, I wouldn't ask my worse enemy to drive through NJ for me! As long as the labs remain at current levels, I should only have to make that trip for 8 more months, 4 -8 more times altogether.
Tasha,
Thanks lady. How are you doing? I haven't seen too many posts from you recently
Awwww, I wouldn't ask my worse enemy to drive through NJ for me! As long as the labs remain at current levels, I should only have to make that trip for 8 more months, 4 -8 more times altogether.
Tasha,
Thanks lady. How are you doing? I haven't seen too many posts from you recently
zazza, pro,
I got the official go-ahead from my gastro today. it's full steam ahead for the 72.
After presenting him with copies of the studies Valtod provided links to, as well as the berg (thanks Za), Sanchez and a few others, he agreed it made sense for me to continue.
I asked him what he would do if he were in my situation and he said he would also try to improve his odds of SVR and that 6 months of additional TX for a much better chance of a cure sounded right to him.
So, here I go - 40 weeks down, 32 to go.
BTW - I'm still UND - he does PCR's every month or two.
Zazza,
You must be thrilled to have the last 24 shots in your possession. it represents the end of this marathon for you. I'm gonna post when i get my last shipment, too. (sometime in early February).
So sorry to hear you've been having the tearies. Me too (except i don't exactly cry). Must be the cumulative effect of the meds.
Pro,
Love the autumn barn scene.
Susan,
I can't imagine going through this nightmare 9 times! Of course you're having down moments! I just wish you could get into a trial group. Hopefully the new drugs will be available soon.
NYGirl,
Even YOU would have known you had a flat tire! Man, I was going about 80mph, in the far left lane, when the car started shimmying and shivering and grinding along the blacktop. I don't know how I managed to get over to the right shoulder as there were tractor trailers to the side, front and rear of me.
When I got out to check the damage, it wasn't just a FLAT tire; it was SHREDDED rubber! No slow leak there. Guess I must have run over something real sharp.
dlr,
Thanks for the kind words. And, don't worry too much; some people have much milder reactions to TX or, if they do have hard stretches, it's generally not every single day. You're quite young so i would imagine your body might be able to handle the meds fairly well. Still, it's no walk-in-the-park.
Pigeon,
Awwww, I wouldn't ask my worse enemy to drive through NJ for me! As long as the labs remain at current levels, I should only have to make that trip for 8 more months, 4 -8 more times altogether.
Tasha,
Thanks lady. How are you doing? I haven't seen too many posts from you recently
I got the official go-ahead from my gastro today. it's full steam ahead for the 72.
After presenting him with copies of the studies Valtod provided links to, as well as the berg (thanks Za), Sanchez and a few others, he agreed it made sense for me to continue.
I asked him what he would do if he were in my situation and he said he would also try to improve his odds of SVR and that 6 months of additional TX for a much better chance of a cure sounded right to him.
So, here I go - 40 weeks down, 32 to go.
BTW - I'm still UND - he does PCR's every month or two.
Zazza,
You must be thrilled to have the last 24 shots in your possession. it represents the end of this marathon for you. I'm gonna post when i get my last shipment, too. (sometime in early February).
So sorry to hear you've been having the tearies. Me too (except i don't exactly cry). Must be the cumulative effect of the meds.
Pro,
Love the autumn barn scene.
Susan,
I can't imagine going through this nightmare 9 times! Of course you're having down moments! I just wish you could get into a trial group. Hopefully the new drugs will be available soon.
NYGirl,
Even YOU would have known you had a flat tire! Man, I was going about 80mph, in the far left lane, when the car started shimmying and shivering and grinding along the blacktop. I don't know how I managed to get over to the right shoulder as there were tractor trailers to the side, front and rear of me.
When I got out to check the damage, it wasn't just a FLAT tire; it was SHREDDED rubber! No slow leak there. Guess I must have run over something real sharp.
dlr,
Thanks for the kind words. And, don't worry too much; some people have much milder reactions to TX or, if they do have hard stretches, it's generally not every single day. You're quite young so i would imagine your body might be able to handle the meds fairly well. Still, it's no walk-in-the-park.
Pigeon,
Awwww, I wouldn't ask my worse enemy to drive through NJ for me! As long as the labs remain at current levels, I should only have to make that trip for 8 more months, 4 -8 more times altogether.
Tasha,
Thanks lady. How are you doing? I haven't seen too many posts from you recently
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