Well lemme tellya, when I wrote the last post I had no idea. The reclast was the worst of all. I was exhausted for 2 months, at which point I became convinced that I was dehydrated* and started super hydrating, which made a BIG difference. DIdn't fix it copletely, though. I still have to be careful, which I don't like.
I remember Lynn talking about having to be careful to ration out her energy while she was on chemo, and worrying that if I were ever in a similar situation..... I would have a really hard time with it; I just don't have the planning skills! That was, oh, some months before my own diagnosis.... but luckily for me chemo was not like that for me, and I didn't have to learn to ration out my energy. (Whew!) However, NOW I'm having to work on that.
* About the dehydrated thing.... Christina, my acupucturist, wondered if I was dehydrated. She hears my symptoms every week when I see her (well twice a week now) so her ideas come from hearing about my symptoms. Still, I dismissed it because I haven't been thirsty. However, I realized I'm usually very careful to hydrate.... in the summer, when I'm biking in hot sweaty weather. I don't worry about it so much in the winter. And I always think of hydrating as a companion thing to exercise.... though I DID hydrate extra when I was on chemo, and also the day I got the reclast. It didn't occur to me that I might need to hydrate extra for MONTHS!
But after CHristina wondered about dehydration, I saw online that it could be a side effect of reclast, and that the symptoms I was having were listed as side effects of both reclast AND of dehydration.... Then I went to the dentist and I had my first CAVITY in over 30 years.... I was instantly suspicious. I said to the dentist, WAITAMINIT, how could this be caused by that nasty drug? And he asked if I had had a dry cottony mouth.... which in fact I have had, but not thought anything of. He explained that bacteria don't cause cavities directly by eating holes in your teeth.... they produce acid, which eats holes in your teeth -- except that saliva neutralizes it -- or washes it away, or something. But if you don't have enough SALIVA.... Is that interesting or WHAT???
Well that convinced me that I was dehydrated. I went home and watered myself like I was a newly planted shrub. The pain in my leg went away.... I neglected to mention that at the beginning of this post, but I had a pain in my left leg just at the base of my hamstring, which started around the same time as the exhaustion, about a week after the reclast. It wasn't that painful, but it was more or less constant, and I wondered what it WAS. It made my leg feel heavy, and I wondered if I should be careful of it somehow..... I was also getting leg cramps during the night, for the first time since pregnancy. Very strange! These symptoms have disappeared since I started hydrating.... That was on 3/14, 4 weeks ago tomorrow -- so that's pretty real.
The other interesting news is about the digestion. I tried eliminating wheat, and the result has been pretty dramatic.... so I've cut it out. Now I'm eating no meat, sugar/honey/maple syrup, only limited dairy (feta, yogurt, & aged cheese -- but nothing else,)and very limited soy and alcohol..... Good thing I'm not actually a picky eater :-D
So -- I have to be careful not to over-exercise, and of course I'm not real clear about what that means, so that's an interesting dance. I've stopped biking to acupuncture, because C says that I use up her treatment on my ride home..... My digestion is touchy even though the drug didn't go through my gut -- but much better w/o wheat.
Sunday, April 10, 2011
Sunday, January 16, 2011
Bisphosphinate Follow-Up (& some tamoxifen)
Survivor follow up stuff does drag on a bit. I'm still in treatment -- not active treatment, you understand, not chemo -- but I take tamoxifen -- a pill once daily for 5 years. It's simple to take it, but the side effects have a much bigger impact on my life than I had expected.
It's the hot flashes -- I started getting them on chemo but they got serious on tamoxifen -- every half hour I'm awake, and they wake me in the night. Used to be every 2 hours, which made it really hard to get a decent night's sleep..... That's much better now with melatonin, which never did anything for me before -- and of course in a pinch there's ambien. You know, I can do anything if it's just for a few months, or even a year at the outside.....but I've been on this tamoxifen for almost 2 years (2/9) and three left to go. Course after that I take an aromatase inhibitor for 2-3 years (I forget) and that has more side effects..... but hopefully not this particular one.)
And then there's the bisphosphinate -- an osteopororis drug, which is being shown to prevent bone metastases in breast cancer survivors -- at least SOME bone metastases in SOME cancer survivors. That has some serious risks and I had teeth removed in order to avoid the scariest one. But I've had awful GI side effects from the two oral bisphosphinates I've tried, and hope to be starting on an intravenous one in a week or so. It will make me sick for a few days probably, but just achy and flulike -- should be fine on the gut since it doesn't go THROUGH the gut.
I started taking fosamax in October 2009. I took it weekly for, hmmm, maybe 7 months before I realized that I was getting GI ailments more than everyone else in the house.... so I discontinued for some weeks and then started again. This was decided in consultation with the nurses at my oncologist's office. I was wondering if it had to do with taking too much vitamin D as well, but the next time I went to see the onc my D was still low-normal (40) same as before -- so he said to double what I was taking (2g/day instead of 1) and stop the fosamax for awhile. In the end I stopped the fosamax completely last summer and waited awhile before doing anything.
I couldn't get in touch with my onc -- I made the mistake of trying to get in touch with HIM rather than the nurses. (I've done that before, and it didn't work then either. SOmetimes I just want his opinion and don't want to go through a middleman.) Last summer I sent email to his secretary, who printed it and gave it to him (she emailed me when she did)and I actually sent him a SNAILMAIL note. GAWD I wish he'd do email! I have two other doctors who do email, thank goodness -- the radiation onc from Georgetown (course my question has to be somewhat radiation related to justify emailing him) and the miraculous one, my onc from the Mayo in Minnesota, who I haven't seen since my surgery in October 2009. I have no plans to go back there and he gets no money for helping me but he always answers my emails promptly (even on SUNDAYS!) and usually with just the information I'm looking for. I should send him something sometime -- a card, a present. (I always get this grateful impulses, but unfortunately my attention span is such that they always pass before I can act on them. I wanted to send something to my Mayo surgeon too.)
Anyway back to the bisphosphinates -- I got a prescription for Boniva in October 2010, and filled it. I was bummed because there was a $150 copayment for a 3 month supply -- which is 3 pills, one monthly. I wish I'd called the doc for a ONE month dose instead when that happened because I'm not going to end up taking the other 2 and so that's $100 down the tubes. (I'll bring the unopened pills to the office so hopefully they can give them out to women who are starting out.....if only I had a place like SECHC to give them too, where the people who came there really needed the $ help.) When I took the boniva I felt fluey that first day -- and maybe a little bit the 2nd day. I remember thinking that if I'd realized that might happen after the first pill I took I would have taken it when Alan was home. (I took it on a Sunday but he was out of town.) Anyway I was a bit bummed about the idea of being sick for a day or 2 a month. It was going to be on a schedule, but I figured I could maybe change it by a day or so if need be. However..... that turned out not to be the end of it.
After I got over the fluey feeling, I was nauseous and dizzy/shaky on and off for the next 10 days. The shakiness was like low blood sugar but eating didn't fix it. (This was the same thing that had happened in the spring/summer, which it had taken me awhile to connect w/the fosamax -- since I'd been on it for months.) Then the FOLLOWING 10 days I was extremely gassy. I was tired, too -- but didn't figure that out til a good month later when the tiredness lifted. (I'm now thinking that the tiredness I had last spring/summer was probably from the fosamax -- see blog post from 6/25/10.) In fact the tiredness is still lifting -- I'm better and better and better! HOwever....I've been unmedicated for bone density since November. I was tempted to just blow off the bisphosphinates altogether -- but then Elizabeth Edwards died.
She'd been diagnosed with stage 3 cancer in her 40s, gotten better with treatment, and then died of bone metastases at age 61. Well that's lots older than I am now, but still -- if bisphosphinates would have made the difference between what happened to her and a longer life, I'd be a fool to pass them up. (They're only newly discovered to work against breast cancer bone metastases in the last.... 3 years? Maybe 5 at the outside?) I mean maybe they wouldn't have made the difference for her.... maybe she tried them in her last few years. But I can try them as a preventive -- that's new.
SO I'm going to try an IV bisphosphinate -- reclast (zometa.) I have to see my GI doctor first, though I'm not sure why. Both the insurance woman at the onc's office and the onc want me to see her. I've had trouble getting IN to see her but have an appt. for Friday -- followed by an appt. to get the infusion (zometa) at the onc's office later same day, which I will change if the GI doc orders tests. I rather think she'll listed to what I have to say and say "Okay, so don't take them!" The reclast will not likely be covered by my insurance, though I have tried the oral meds and not tolerated them, but it's worth a try, the insurance woman says. She says the way it works with my insurance is, I sign a waiver and probably pay upfront, and then we have to appeal. (It's $1000-1200/dose, once a year.) Now I am not particularly up for dealing with insurance companies, ever, but this woman is very helpful, and wonderful, and I am hoping she's going to take care of all the interactions with them. I'll write a letter if it'll help, and get the GI doc to write a letter....
Meanwhile, my digestion is worse than usual. I don't know that there's anything to SEE in a scan that would help me get the IV meds, but I'm gassy every night now -- daytime some too, but particularly at night. It's like my gut really wants me to not eat dinner. So I've started eating very light at dinnertime. We will see.
It's the hot flashes -- I started getting them on chemo but they got serious on tamoxifen -- every half hour I'm awake, and they wake me in the night. Used to be every 2 hours, which made it really hard to get a decent night's sleep..... That's much better now with melatonin, which never did anything for me before -- and of course in a pinch there's ambien. You know, I can do anything if it's just for a few months, or even a year at the outside.....but I've been on this tamoxifen for almost 2 years (2/9) and three left to go. Course after that I take an aromatase inhibitor for 2-3 years (I forget) and that has more side effects..... but hopefully not this particular one.)
And then there's the bisphosphinate -- an osteopororis drug, which is being shown to prevent bone metastases in breast cancer survivors -- at least SOME bone metastases in SOME cancer survivors. That has some serious risks and I had teeth removed in order to avoid the scariest one. But I've had awful GI side effects from the two oral bisphosphinates I've tried, and hope to be starting on an intravenous one in a week or so. It will make me sick for a few days probably, but just achy and flulike -- should be fine on the gut since it doesn't go THROUGH the gut.
I started taking fosamax in October 2009. I took it weekly for, hmmm, maybe 7 months before I realized that I was getting GI ailments more than everyone else in the house.... so I discontinued for some weeks and then started again. This was decided in consultation with the nurses at my oncologist's office. I was wondering if it had to do with taking too much vitamin D as well, but the next time I went to see the onc my D was still low-normal (40) same as before -- so he said to double what I was taking (2g/day instead of 1) and stop the fosamax for awhile. In the end I stopped the fosamax completely last summer and waited awhile before doing anything.
I couldn't get in touch with my onc -- I made the mistake of trying to get in touch with HIM rather than the nurses. (I've done that before, and it didn't work then either. SOmetimes I just want his opinion and don't want to go through a middleman.) Last summer I sent email to his secretary, who printed it and gave it to him (she emailed me when she did)and I actually sent him a SNAILMAIL note. GAWD I wish he'd do email! I have two other doctors who do email, thank goodness -- the radiation onc from Georgetown (course my question has to be somewhat radiation related to justify emailing him) and the miraculous one, my onc from the Mayo in Minnesota, who I haven't seen since my surgery in October 2009. I have no plans to go back there and he gets no money for helping me but he always answers my emails promptly (even on SUNDAYS!) and usually with just the information I'm looking for. I should send him something sometime -- a card, a present. (I always get this grateful impulses, but unfortunately my attention span is such that they always pass before I can act on them. I wanted to send something to my Mayo surgeon too.)
Anyway back to the bisphosphinates -- I got a prescription for Boniva in October 2010, and filled it. I was bummed because there was a $150 copayment for a 3 month supply -- which is 3 pills, one monthly. I wish I'd called the doc for a ONE month dose instead when that happened because I'm not going to end up taking the other 2 and so that's $100 down the tubes. (I'll bring the unopened pills to the office so hopefully they can give them out to women who are starting out.....if only I had a place like SECHC to give them too, where the people who came there really needed the $ help.) When I took the boniva I felt fluey that first day -- and maybe a little bit the 2nd day. I remember thinking that if I'd realized that might happen after the first pill I took I would have taken it when Alan was home. (I took it on a Sunday but he was out of town.) Anyway I was a bit bummed about the idea of being sick for a day or 2 a month. It was going to be on a schedule, but I figured I could maybe change it by a day or so if need be. However..... that turned out not to be the end of it.
After I got over the fluey feeling, I was nauseous and dizzy/shaky on and off for the next 10 days. The shakiness was like low blood sugar but eating didn't fix it. (This was the same thing that had happened in the spring/summer, which it had taken me awhile to connect w/the fosamax -- since I'd been on it for months.) Then the FOLLOWING 10 days I was extremely gassy. I was tired, too -- but didn't figure that out til a good month later when the tiredness lifted. (I'm now thinking that the tiredness I had last spring/summer was probably from the fosamax -- see blog post from 6/25/10.) In fact the tiredness is still lifting -- I'm better and better and better! HOwever....I've been unmedicated for bone density since November. I was tempted to just blow off the bisphosphinates altogether -- but then Elizabeth Edwards died.
She'd been diagnosed with stage 3 cancer in her 40s, gotten better with treatment, and then died of bone metastases at age 61. Well that's lots older than I am now, but still -- if bisphosphinates would have made the difference between what happened to her and a longer life, I'd be a fool to pass them up. (They're only newly discovered to work against breast cancer bone metastases in the last.... 3 years? Maybe 5 at the outside?) I mean maybe they wouldn't have made the difference for her.... maybe she tried them in her last few years. But I can try them as a preventive -- that's new.
SO I'm going to try an IV bisphosphinate -- reclast (zometa.) I have to see my GI doctor first, though I'm not sure why. Both the insurance woman at the onc's office and the onc want me to see her. I've had trouble getting IN to see her but have an appt. for Friday -- followed by an appt. to get the infusion (zometa) at the onc's office later same day, which I will change if the GI doc orders tests. I rather think she'll listed to what I have to say and say "Okay, so don't take them!" The reclast will not likely be covered by my insurance, though I have tried the oral meds and not tolerated them, but it's worth a try, the insurance woman says. She says the way it works with my insurance is, I sign a waiver and probably pay upfront, and then we have to appeal. (It's $1000-1200/dose, once a year.) Now I am not particularly up for dealing with insurance companies, ever, but this woman is very helpful, and wonderful, and I am hoping she's going to take care of all the interactions with them. I'll write a letter if it'll help, and get the GI doc to write a letter....
Meanwhile, my digestion is worse than usual. I don't know that there's anything to SEE in a scan that would help me get the IV meds, but I'm gassy every night now -- daytime some too, but particularly at night. It's like my gut really wants me to not eat dinner. So I've started eating very light at dinnertime. We will see.
Saturday, September 4, 2010
Biking the Blue Ridge Challenge
I'm planning to do this ride on Monday (labor day):
http://bikewashington.org/routes/bluerdg/index.htm
NO idea if I can bike up that godawful mountain at ANY pace, but hey, I can walk it. (Then lessee how I get DOWN it....)
A lot of people seem to think that the way to expand lung capacity is to ride hills. So..... here are some hills! The women I'm going with are planning to ride at a moderate pace -- that's why I'm attempting it. Wish me luck!!!
Will tell about the hot flash/acupuncture/herb progress in Ithaca next time. Now I've gotta get to bed.
http://bikewashington.org/routes/bluerdg/index.htm
NO idea if I can bike up that godawful mountain at ANY pace, but hey, I can walk it. (Then lessee how I get DOWN it....)
A lot of people seem to think that the way to expand lung capacity is to ride hills. So..... here are some hills! The women I'm going with are planning to ride at a moderate pace -- that's why I'm attempting it. Wish me luck!!!
Will tell about the hot flash/acupuncture/herb progress in Ithaca next time. Now I've gotta get to bed.
Saturday, July 31, 2010
melatonin & onc problem
I've been sleeping better for the past week. It's like a small miracle -- there suddenly doesn't seem to be a hot flash waiting for me every single time I wake up. I think it might be the melatonin. I'd bought a bottle and tried it once and decided it did nothing. I've always had sleep issues, but they were not helped by melatonin. But now I have new sleep issues, and maybe they are....
I googled it, and I see that it's an endocrine hormone, and that it lowers body temp (that's why I think it might be what's making the difference; my sleep problems now are all about tempterature....) I also read that it might have antioxidant properties, and interact positively with the immune system, and help with cancer and HIV. Also it raises prolactin levels, lowers FSH levels, and the effects of long term use (>3 months) are not known.
ANyone know anything about these things? I've been having hot sweaty sleep disturbances for a year and a half, which I fully expect to continue the 3.5 remaining years that I'm going to be using tamoxifen (and who knows what side effects the aromatase inhibitor I'm to take for the NEXT 5 years will bring?) I was thinking I have perhaps found the solution -- but pretty sure I'd need to continue taking it for the 3.5 years -- if not 8.5. And HEY, it might help other things. Or not. ANyone know?
I wish I could get in touch with my onc to ask him. I wish he did email. At the moment I've been off the bisphosphonate for the past 2 weeks, because I got the shakes again (like when I was nauseous all the time -- the nausea was accompanied by the shakes. The combo made it feel like a low blood sugar reaction, but eating didn't help at all.) I don't know if he agrees with this decision, though, because I can't reach him. It's the only problem I have with this doctor but it's getting bigger...... and will get bigger still as the time between my appointments lengthens. I've asked about email before but I guess I have to make a serious case for it. Maybe I have to write him a LETTER, as in snail mail. It feels so slow, but it's got to be better than telephone tag..... Besides, at this point, if he calls me back I won't have all my questions present anymore. They were all in the email I sent his secretary, which she said she'd print out and give him...... he did call me back once, at the home number, during the day when I wasn't home. I called and asked his secretary to ask him to call my cell. That was over a week ago.....
I googled it, and I see that it's an endocrine hormone, and that it lowers body temp (that's why I think it might be what's making the difference; my sleep problems now are all about tempterature....) I also read that it might have antioxidant properties, and interact positively with the immune system, and help with cancer and HIV. Also it raises prolactin levels, lowers FSH levels, and the effects of long term use (>3 months) are not known.
ANyone know anything about these things? I've been having hot sweaty sleep disturbances for a year and a half, which I fully expect to continue the 3.5 remaining years that I'm going to be using tamoxifen (and who knows what side effects the aromatase inhibitor I'm to take for the NEXT 5 years will bring?) I was thinking I have perhaps found the solution -- but pretty sure I'd need to continue taking it for the 3.5 years -- if not 8.5. And HEY, it might help other things. Or not. ANyone know?
I wish I could get in touch with my onc to ask him. I wish he did email. At the moment I've been off the bisphosphonate for the past 2 weeks, because I got the shakes again (like when I was nauseous all the time -- the nausea was accompanied by the shakes. The combo made it feel like a low blood sugar reaction, but eating didn't help at all.) I don't know if he agrees with this decision, though, because I can't reach him. It's the only problem I have with this doctor but it's getting bigger...... and will get bigger still as the time between my appointments lengthens. I've asked about email before but I guess I have to make a serious case for it. Maybe I have to write him a LETTER, as in snail mail. It feels so slow, but it's got to be better than telephone tag..... Besides, at this point, if he calls me back I won't have all my questions present anymore. They were all in the email I sent his secretary, which she said she'd print out and give him...... he did call me back once, at the home number, during the day when I wasn't home. I called and asked his secretary to ask him to call my cell. That was over a week ago.....
Tuesday, July 6, 2010
HOTHOTHOT -- & New driver alert!
It's a heat wave. Went biking anyway, and I was surprised at how fine I was. Just the last half hr was hard -- it was 12-12:30 AND on the Custis trail -- which is the way home, hilly, wonderful, BUT not real shady. We'd gone to Bethesda (because it's the shadiest choice)so it was the only non shade.
Really I couldn't bike in this weather (high of 100° today & code red -- poor air quality) if I didn't have AC to come home to.
And then it broke. The AC broke. I couldn't believe it. At first I thought it was 80° when set to 77 because it was so hot outside -- though I should have known better. But then when it got up to 82......
The service people came only 2 hrs after I called (WOW!) but said it might take all night to cool down to 73°. Gawd, maybe I'll sleep downstairs tonight......the basement is nice & cool.
And then tomorrow I have to bike again, and it's going to be just as hot. Maybe a teeny bit warmer, like 1°. I rescheduled my 2pm acupuncture appt to 11 so I'd have time to bike there and back. Maybe I'll leave early so I have less time biking in the afternoon...... I planned it that way so I could give Matthew the car. He started his internship yesterday, working on computers for the homeless shelter -- and he got his driver's license!!!
He got it on Saturday. We had thought we'd have to make him wait still -- the driving instructor said we wouldn't be able to get him on our auto insurance til he gets his real plastic license in 2 months, after his court date. I thought, What a tease! A license but you can't USE it! I talked to one friend who said it had indeed been a tease for her sons, but you can't let them drive uninsured. But then Joan said it wasn't any problem for her sons; her insurance said they were covered right away...... so I called our insurance and got Matthew covered. He's covered NOW. We'll pay a little more than double what we were paying -- I'm a little cheaper because I'm in the preferred range -- but he's a lot cheaper than the standard new teenage driver because of his GRADES. How about that? We get a 35% discount because he has over a 3.0!
And now we're going to see how we share the car...... I got Alan to sign Matthew up for a credit card so we can give him shopping lists when he takes the car -- two birds with one stone, far as I'm concerned! (....and pick up your sister on your way home -- I'll be on my bike.)
Really I couldn't bike in this weather (high of 100° today & code red -- poor air quality) if I didn't have AC to come home to.
And then it broke. The AC broke. I couldn't believe it. At first I thought it was 80° when set to 77 because it was so hot outside -- though I should have known better. But then when it got up to 82......
The service people came only 2 hrs after I called (WOW!) but said it might take all night to cool down to 73°. Gawd, maybe I'll sleep downstairs tonight......the basement is nice & cool.
And then tomorrow I have to bike again, and it's going to be just as hot. Maybe a teeny bit warmer, like 1°. I rescheduled my 2pm acupuncture appt to 11 so I'd have time to bike there and back. Maybe I'll leave early so I have less time biking in the afternoon...... I planned it that way so I could give Matthew the car. He started his internship yesterday, working on computers for the homeless shelter -- and he got his driver's license!!!
He got it on Saturday. We had thought we'd have to make him wait still -- the driving instructor said we wouldn't be able to get him on our auto insurance til he gets his real plastic license in 2 months, after his court date. I thought, What a tease! A license but you can't USE it! I talked to one friend who said it had indeed been a tease for her sons, but you can't let them drive uninsured. But then Joan said it wasn't any problem for her sons; her insurance said they were covered right away...... so I called our insurance and got Matthew covered. He's covered NOW. We'll pay a little more than double what we were paying -- I'm a little cheaper because I'm in the preferred range -- but he's a lot cheaper than the standard new teenage driver because of his GRADES. How about that? We get a 35% discount because he has over a 3.0!
And now we're going to see how we share the car...... I got Alan to sign Matthew up for a credit card so we can give him shopping lists when he takes the car -- two birds with one stone, far as I'm concerned! (....and pick up your sister on your way home -- I'll be on my bike.)
Thursday, July 1, 2010
energy balancing
I got my energy back Sunday night -- and have been feeling like myself since then. Then I woke up tired today. I don't think it was the bike ride yesterday (33 miles, to Herndon and back) -- because I felt fine both on the ride and afterwards. In fact I realized that i was talking a mile a minute like I USED to, both on the way out and back. First time in awhile I've had enough air/energy to do that -- yay!
But then I was still hyped up last night -- it was Em's 13th birthday yesterday and it ended up being really special. We let her stay up late -- and then of course WE didn't get to bed on time. Em was tired this morning too. (I bet ALan will be wiped tonight -- he had to get up the earliest, 6am.) Anyway so I had trouble getting to sleep last night, both initially and after I woke with hot flashes. Then I woke tired even though I was able to sleep til 8:30.
I wonder if there's a new rhythm to my sleep needs, because of the chopped up sleep (I wake up every 2 hrs with a hot flash -- except sometimes I get a 4 hr stretch -- usually the night after a good bike ride or if I take an ambien.) I mean I used to be able to get away with 6 hr nights during the week -- but they were often solid, uninterrupted sleep. GOD, what I wouldn't do for an uninterrupted 6 hours now!!!!
I hope that's what it is rather than something ominous. The way I'm having to decode my body's signals and budget my energy spending reminds me of Lynn's description of what it was like for her on chemo - though thank goodness I get more than 20 minute bursts. (I'm just not a good enough planner to make use of that!)
But then I was still hyped up last night -- it was Em's 13th birthday yesterday and it ended up being really special. We let her stay up late -- and then of course WE didn't get to bed on time. Em was tired this morning too. (I bet ALan will be wiped tonight -- he had to get up the earliest, 6am.) Anyway so I had trouble getting to sleep last night, both initially and after I woke with hot flashes. Then I woke tired even though I was able to sleep til 8:30.
I wonder if there's a new rhythm to my sleep needs, because of the chopped up sleep (I wake up every 2 hrs with a hot flash -- except sometimes I get a 4 hr stretch -- usually the night after a good bike ride or if I take an ambien.) I mean I used to be able to get away with 6 hr nights during the week -- but they were often solid, uninterrupted sleep. GOD, what I wouldn't do for an uninterrupted 6 hours now!!!!
I hope that's what it is rather than something ominous. The way I'm having to decode my body's signals and budget my energy spending reminds me of Lynn's description of what it was like for her on chemo - though thank goodness I get more than 20 minute bursts. (I'm just not a good enough planner to make use of that!)
Friday, June 25, 2010
tired
I’m tired a lot these days. I know chemo fatigue can last years but I don’t feel like I was this tired in Feburary – wasn’t I shoveling like a madwoman? I did like 4 four hour shoveling stints….. So, what’s with this backsliding? I have cut down on the swimming a lot because I’m tired…… and it’s harder to drag myself through swimming than the others because it’s so solitary. I’m tired biking and walking too – and I do short change Pinky some. But I still bike. But….. I really don’t enjoy it as much as I used to. I just refuse to quit, to give in to whatever the problem is. But it’s starting to feel like enough already…..
I was nauseous, too, for like a month. Thought it was viral, but it lasted too long. Then thought it was the bisphosphonate -- talked with the onc about it, stopped it for a month..... didn't get better. Then was pretty sure I had it, vitamin D toxicity -- I'd been taking a double dose, 2300 mg/d, after the onc said to take 1,000 and then a couple of months later my regular doc did my D levels again and said, "Whatever you're taking, double it." SHe didn't ask what I was taking or when I'd started, and I wondered if the levels were taking awhile to come up...... But I just had my D levels checked on Monday and they're STILL low. (40, the scale being 30-100.) It's "low normal." The problem is, that's what it was when I STARTED taking this D. So where's the D going? Am I not metabolizing it, and it's just toxifying my liver? How can I find out? WHat else could be making me nauseous?
I've been nauseous very seldom in my life. This nausea wasn't like pregnancy nausea -- not relieved by eating (that's low blood sugar nausea.) I did keep trying. Made me gassy, even put on a couple of pounds trying.....I was nauseous and shaky, anyway. It's more like the toxic nausea..... like chemo nausea, and like the nausea I had when I had niacin poisoning in the late '80s. But the doc said today that the D levels are still low and I should go back on it. I'm sorry to hear that because I've been NOT nauseous for the last week, since I stopped taking the D. That's why I wonder, maybe the supplementation is not working, and ONLY toxifying. Have to figure out what tests might check for that. They only did my D levels -- I bet there's something else that needs to be done.....
Any thoughts or ideas, I'll take 'em! Meanwhile..... I'm tired.
I was nauseous, too, for like a month. Thought it was viral, but it lasted too long. Then thought it was the bisphosphonate -- talked with the onc about it, stopped it for a month..... didn't get better. Then was pretty sure I had it, vitamin D toxicity -- I'd been taking a double dose, 2300 mg/d, after the onc said to take 1,000 and then a couple of months later my regular doc did my D levels again and said, "Whatever you're taking, double it." SHe didn't ask what I was taking or when I'd started, and I wondered if the levels were taking awhile to come up...... But I just had my D levels checked on Monday and they're STILL low. (40, the scale being 30-100.) It's "low normal." The problem is, that's what it was when I STARTED taking this D. So where's the D going? Am I not metabolizing it, and it's just toxifying my liver? How can I find out? WHat else could be making me nauseous?
I've been nauseous very seldom in my life. This nausea wasn't like pregnancy nausea -- not relieved by eating (that's low blood sugar nausea.) I did keep trying. Made me gassy, even put on a couple of pounds trying.....I was nauseous and shaky, anyway. It's more like the toxic nausea..... like chemo nausea, and like the nausea I had when I had niacin poisoning in the late '80s. But the doc said today that the D levels are still low and I should go back on it. I'm sorry to hear that because I've been NOT nauseous for the last week, since I stopped taking the D. That's why I wonder, maybe the supplementation is not working, and ONLY toxifying. Have to figure out what tests might check for that. They only did my D levels -- I bet there's something else that needs to be done.....
Any thoughts or ideas, I'll take 'em! Meanwhile..... I'm tired.
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