Aa
The frigging tx rollercoaster
Gawd. I've been doing really good.. hgb has been holding at around 11.5 .. weeks without epogen .. ANC holding .. I was just at the doc this morning for my Week 30 (!) checkup .. and we were kind of celebrating, the trial nurse and I .. all the cool milestones.. hgb holding, ANC holding, hitting Week 30, starting to get a break from the weekly blood tests with weekly verdicts....when my phone rang and it was her this aft I knew it wasn't good. She had my blood results back and my hgb is starting to tank again, it's at 10.7 which I'm handling but that it's going down was not what I was expecting after it being 11.5 from a week ago Monday and consistently holding. My ANC is 1.0 which is okay if not on the trial but ON the trial means back to interferon reduction today. Gawd...totally blindsided me. Totally.
It's not like it's the end of the world...it's just..up and down and up and down and up and down.....it's worse when you get complacent and I thought I'd learned the lesson that you take NOTHING for granted on treatment.. but I guess not. I've been feeling so GOOD lately but too good .. like an airplane trying to go into flight all the time and then too much the other way so I'm doing the wide mood swings and trying to keep myself from getting too exhilarated because it doesn't feel normal or healthy and I hate meds for these things but even I had to admit that it's time if I'm going to get through this and maintain the right level of emotional control to manage all the many things going on in my life..
Once I soak in the information, I'll be okay .. and I'll suck it up and get back to the business of rolling with it day by day which I should have stuck with ... rather than optimistically thinking I just *might* be on a roll all the way through to the end. Har, har... like.. as if I was going to ride this all the way to January 30th, eh? Silly naive woman. Sigh.
It's not a big deal compared to some.. it's just MY deal. Back to weekly blood tests, weekly verdicts, dealing with the mental gymnastics that come with dosage reductions and starting an increased med today that helps control the mood swinging going on ... I'll have to start charging myself airport surtaxes if this continues, sheesh. I'm burning fuel like crazy, I should have earned my wings by now.
Anyway.... I don't have a point, I don't even have a complaint, a question, a nuthing. I just needed to just......be with my people here and ... emote.
Trish
It's not like it's the end of the world...it's just..up and down and up and down and up and down.....it's worse when you get complacent and I thought I'd learned the lesson that you take NOTHING for granted on treatment.. but I guess not. I've been feeling so GOOD lately but too good .. like an airplane trying to go into flight all the time and then too much the other way so I'm doing the wide mood swings and trying to keep myself from getting too exhilarated because it doesn't feel normal or healthy and I hate meds for these things but even I had to admit that it's time if I'm going to get through this and maintain the right level of emotional control to manage all the many things going on in my life..
Once I soak in the information, I'll be okay .. and I'll suck it up and get back to the business of rolling with it day by day which I should have stuck with ... rather than optimistically thinking I just *might* be on a roll all the way through to the end. Har, har... like.. as if I was going to ride this all the way to January 30th, eh? Silly naive woman. Sigh.
It's not a big deal compared to some.. it's just MY deal. Back to weekly blood tests, weekly verdicts, dealing with the mental gymnastics that come with dosage reductions and starting an increased med today that helps control the mood swinging going on ... I'll have to start charging myself airport surtaxes if this continues, sheesh. I'm burning fuel like crazy, I should have earned my wings by now.
Anyway.... I don't have a point, I don't even have a complaint, a question, a nuthing. I just needed to just......be with my people here and ... emote.
Trish
"She's starting to think I'm pretty smart..."
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And you're 30 weeks in?!?
I can guess at your visits who's the sharper tool in the shed. :)
Wishing you lots of feistiness and higher numbers,
~eureka
-----------------------------
And you're 30 weeks in?!?
I can guess at your visits who's the sharper tool in the shed. :)
Wishing you lots of feistiness and higher numbers,
~eureka
For your safety, please buckle up and keep your arms and legs inside the ride at all times.
My heart goes out to you, Trish. Hang on and yo'll get there!
Brent
My heart goes out to you, Trish. Hang on and yo'll get there!
Brent
You go girl!! Your attitude and fighting spirit is a great inspiration, keep going, I'm cheering or you! Love and hugs xxxxxx
The other thing is that my enzymes are up higher than they were beginning of treatment. Now I was lucky to start with enzymes in the 40's however they went down to the teens and now they're up higher than they've ever been. I asked about my enzymes when I was there on Friday and the treatment nurse wondered why and I told her I was just keeping an eye on them.. and today she told me that they were at their highest level so far. Either it's the thyroid or the interferon and I'm banking on the hyperthyroid. She's starting to think I'm pretty smart...lol :) So now both myself AND them are going to be keeping an eye on those enzymes and that's all I want.. that we keep an eye.
I'm going to be fine .. just at that point where everything's going a little but nutty all over the place .. and I'm getting that feisty thing going on that says "yeah? well take this you sonofa..." You know.
Bonus.. the meds the Hep C psych doc put me on are actually working well, I just started last Friday and the pharmacist gave me a good piece of advice.. I asked him do I take them when I'm going to bed or when I WANT to go to bed and he said when I WANT to and take them at a consistent time. For the last three nights, I have conked out about half an hour after taking them and slept *solid* through the night for about six hours which is getting around my normal of 6 - 7 hours pre-tx. My mood swings seem to be better too .. although three days is no scientific study for sure.. but so far so good and I'm not a zombie, I'm clear-headed and I'm okay.
Fatigue is back but it's not the meds .. I know how to deal with that though, it's back to the strategies and I'm in there and I'm doing it...I know the routine. Only 18 weeks to go and it's going down.
I'm going to be fine .. just at that point where everything's going a little but nutty all over the place .. and I'm getting that feisty thing going on that says "yeah? well take this you sonofa..." You know.
Bonus.. the meds the Hep C psych doc put me on are actually working well, I just started last Friday and the pharmacist gave me a good piece of advice.. I asked him do I take them when I'm going to bed or when I WANT to go to bed and he said when I WANT to and take them at a consistent time. For the last three nights, I have conked out about half an hour after taking them and slept *solid* through the night for about six hours which is getting around my normal of 6 - 7 hours pre-tx. My mood swings seem to be better too .. although three days is no scientific study for sure.. but so far so good and I'm not a zombie, I'm clear-headed and I'm okay.
Fatigue is back but it's not the meds .. I know how to deal with that though, it's back to the strategies and I'm in there and I'm doing it...I know the routine. Only 18 weeks to go and it's going down.
Hope you can hang and glide thru this turbulance as you've run up against some before and you've made it thru, quite well. I know you will sort this out analytically and then deal with the physical part of it one day at a time. Emoting is a good thing, feel free to emote anytime :) take care and God Bless
Welcome Trish, Jasper you are hillarious! I just love it!
Honestly Trish we will get there! We won't give in and we won't give up!
Honestly Trish we will get there! We won't give in and we won't give up!
Pro .. thanks for that. Most definitely not alone in the "terrible twos".
Can-do .. I think you're right.. time for a different... position. :) Thanks for the laugh and the encouragement. :)
portann - I'm not pulled from the study, we've reduced my interferon in a bid to bring up my absolute neutrophil count - trials tend to have stricter guidelines and downright rules about when dosage reductions must be applied and tend to be set at levels that are higher than if on regular treatment. If I was on regular treatment, I could go down to .5 or lower ANC without a correction via dosage reduction. ON my trial, my INF gets auto-reduced at 1.5 ANC and at below 10.0 hemoglobin. The other situation on a trial vs treatment is that they either don't allow rescue drugs to bring your blood counts back up or they are very reluctant to give them and one usually has to fight for them. I don't know how old your kids are ... perhaps they are better knowing that it will be okay no matter what happens than having to hide it from them? You've got a long haul and it's amazing how much kids learn from working through difficult things with you. I do hide some things from my adult kids on this and other things they've asked me to be upfront with them about.
Deb, Rita, GSDgirl, Harry .... thanks so much. The words of encouragement and solidarity are great. Sometimes you just need to get it off your chest to someone who understands, listens and just lets you have your moment. Thank you. Took the edge off the frustration.
Very funny, jasper. :) And very true. Back to the game plan that's been working well for me so far and staying the course.
Well it's been nice to have a visit to the land of Oz for awhile but time to click the heels of my ruby slippers together cause there's no place like home as in settle back into what's been working for me to get through this all along and pitter patter, get at 'er.
So...back to the weekly blood tests and I'm in the home stretch...I know the destination station isn't too far down the track around a few more curves in the bends and off I go .. time to suck it up again. Minor derailment and back on track.
Thanks guys.
Trish
Can-do .. I think you're right.. time for a different... position. :) Thanks for the laugh and the encouragement. :)
portann - I'm not pulled from the study, we've reduced my interferon in a bid to bring up my absolute neutrophil count - trials tend to have stricter guidelines and downright rules about when dosage reductions must be applied and tend to be set at levels that are higher than if on regular treatment. If I was on regular treatment, I could go down to .5 or lower ANC without a correction via dosage reduction. ON my trial, my INF gets auto-reduced at 1.5 ANC and at below 10.0 hemoglobin. The other situation on a trial vs treatment is that they either don't allow rescue drugs to bring your blood counts back up or they are very reluctant to give them and one usually has to fight for them. I don't know how old your kids are ... perhaps they are better knowing that it will be okay no matter what happens than having to hide it from them? You've got a long haul and it's amazing how much kids learn from working through difficult things with you. I do hide some things from my adult kids on this and other things they've asked me to be upfront with them about.
Deb, Rita, GSDgirl, Harry .... thanks so much. The words of encouragement and solidarity are great. Sometimes you just need to get it off your chest to someone who understands, listens and just lets you have your moment. Thank you. Took the edge off the frustration.
Very funny, jasper. :) And very true. Back to the game plan that's been working well for me so far and staying the course.
Well it's been nice to have a visit to the land of Oz for awhile but time to click the heels of my ruby slippers together cause there's no place like home as in settle back into what's been working for me to get through this all along and pitter patter, get at 'er.
So...back to the weekly blood tests and I'm in the home stretch...I know the destination station isn't too far down the track around a few more curves in the bends and off I go .. time to suck it up again. Minor derailment and back on track.
Thanks guys.
Trish
Ding ding, Ding ding, All Aboard! The hepper train is now departing from the station. The next leg of the journey through dead mans pass will leave you in tears for the sharp twists and turns coming down out of the mountains will test the brakes of the very locomotive in your control. It’s best to keep the steam pressure up in the decline of the journey just incase you may have to throw the engines in reverse, for without the synthroid fire, pressure can not be maintained and the engine will become unbalanced causing vibrations of immense proportions and the gauges on the dash will no longer be instrumental when descending at such a high rate of speed. Good Luck and strap in…
jasper
jasper
Hang in there Trish, Its been a rough road for many of us..I agree these last couple of weeks for me have been the hardest.
You can do this, and your doing great!
I kinda have brain fog tonight, so i may not being much sense....
Just wanted you to know i was thinking of you and tell you to stay strong!
peace
rita
You can do this, and your doing great!
I kinda have brain fog tonight, so i may not being much sense....
Just wanted you to know i was thinking of you and tell you to stay strong!
peace
rita
I know the feeling, you think i am moving along here quite nicely! Then there goes the rug! bam, head trauma!
I have never done a trial before, I wish I could say Oh try this or that! We all need to just say it out loud sometimes, without a fix!
Your doing great as was stated earlier, just keep hanging in there, I know you will!
Portann will lecture you later! I am tired, BUT call your NURSE!
Deb
I have never done a trial before, I wish I could say Oh try this or that! We all need to just say it out loud sometimes, without a fix!
Your doing great as was stated earlier, just keep hanging in there, I know you will!
Portann will lecture you later! I am tired, BUT call your NURSE!
Deb
DearTrish,
This is the place where if an ANC goes down, people get it and really care. I hear you, especially about how we hope we can keep ourselves on a roll. I didn't realize a 1.0 would mean being pulled from a study. What is the bottom line for non-study treaters. Is it 0.75 or 0.8?
I also was on a roll, although more modest, after my Hgb fixed itself without epogen and I started going for half-decent walks. I reassured the kids that I was past the worst of it. It's not that I naively believed it but they really wanted to hear that, so I said it for their sake. So when my nurse called to say my ANC from three weeks ago was 0.9, I acted very blase. And I know I need to be lectured about being irresponsible but I buried my head in the sand and didn't call her for this week's test. I just wanna have fun and eat my Chinese take-out.
Next week, I'll suck it up, promise. It helps to know you're doing the same.
Thanks for sharing your news.
This is the place where if an ANC goes down, people get it and really care. I hear you, especially about how we hope we can keep ourselves on a roll. I didn't realize a 1.0 would mean being pulled from a study. What is the bottom line for non-study treaters. Is it 0.75 or 0.8?
I also was on a roll, although more modest, after my Hgb fixed itself without epogen and I started going for half-decent walks. I reassured the kids that I was past the worst of it. It's not that I naively believed it but they really wanted to hear that, so I said it for their sake. So when my nurse called to say my ANC from three weeks ago was 0.9, I acted very blase. And I know I need to be lectured about being irresponsible but I buried my head in the sand and didn't call her for this week's test. I just wanna have fun and eat my Chinese take-out.
Next week, I'll suck it up, promise. It helps to know you're doing the same.
Thanks for sharing your news.
says........It's not like it's the end of the world...it's just..up and down and up and down and up and down.....
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Hmmmmmm, maybe try a different.... oh never mind just try and pace yourself girl:)
Seems your still doing great being that far into tx. Hang in there, wishing you the very best.
cando
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Hmmmmmm, maybe try a different.... oh never mind just try and pace yourself girl:)
Seems your still doing great being that far into tx. Hang in there, wishing you the very best.
cando
Hang in there Trish, your just coming up to the crest of the hill, and it isn't uncommon...:^)pro
An old post of mine..
"how are my nearest 72 week needle buddies doing?
It's 6:00 am here and I just did shot # 45.
The mid 30's weeks into the early 40's were so far the roughest as far as sides go (excluding week #1) Sides have been better the last few weeks, although I have a swollen gland on the left side of my neck/jaw,might have caught a bit of a cold, we'll see....I think the cooler weather has a lot to do with the improved sides,,,that's what I'm telling myself anyway (G)....Hope all is well or at least steady for ya..
:^)Pro "
and a comment from frijole...........
"Proactive - in the for what it's worth department -- when I treated (56 weeks) I found that things leveled out around week 42 or so. My worse weeks were aroung 32-38, of course, that was also winter and a high time on my job. By 42 I was totally exhausted (to differentiate that from anemia) but functioning at a certain level of (could you say?) comfort. Good luck on the overtime. frijole"
Guess my point is---YOU AIN'T ALONE!!!!....it's like the terrible 2's (g)
An old post of mine..
"how are my nearest 72 week needle buddies doing?
It's 6:00 am here and I just did shot # 45.
The mid 30's weeks into the early 40's were so far the roughest as far as sides go (excluding week #1) Sides have been better the last few weeks, although I have a swollen gland on the left side of my neck/jaw,might have caught a bit of a cold, we'll see....I think the cooler weather has a lot to do with the improved sides,,,that's what I'm telling myself anyway (G)....Hope all is well or at least steady for ya..
:^)Pro "
and a comment from frijole...........
"Proactive - in the for what it's worth department -- when I treated (56 weeks) I found that things leveled out around week 42 or so. My worse weeks were aroung 32-38, of course, that was also winter and a high time on my job. By 42 I was totally exhausted (to differentiate that from anemia) but functioning at a certain level of (could you say?) comfort. Good luck on the overtime. frijole"
Guess my point is---YOU AIN'T ALONE!!!!....it's like the terrible 2's (g)
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