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.)
Tuesday, July 6, 2010
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.
Thursday, May 6, 2010
Long term stage 4 survival
SOmeone in my breast cancer support group sent this link to share. She's had 9 years of remission following a stage 4 diagnosis, and apparently is not alone with this miracle.:
http://www.nytimes.com/2010/04/27/health/27case.html?emc=eta1
Isn't that cool? Makes me think of Gabi, same miracle, different ailment. (HIV+ since 1986.) YEAH!!!!!
http://www.nytimes.com/2010/04/27/health/27case.html?emc=eta1
Isn't that cool? Makes me think of Gabi, same miracle, different ailment. (HIV+ since 1986.) YEAH!!!!!
Getting my hills back?????
I'd been wondering if something was up, because I'd been feeling tired in between my biking days. I mean, I'd have a list of things to do including shopping errands, dog walking, swimming, etc. Now often I do only half of a list like that because..... I get sidetracked, often by something completely legitimate -- or I spend a long time doing one thing. But for the last week or two I was just too tired, and didn't want to do any of it. I took naps and walked the dog, that's it. I wouldn't give up a biking day, but it was all I could do it make that happen.
Well I hope it's over, because it was starting to worry me. But then Em stayed home sick on Monday with a tummy thing, which she still has to some extent, but she's much better, and I realized that in addition to feeling tired I was also gassy. Now that's not always such an unusual thing for me -- but LATELy my digestion has been the best it's been in 20 years. I've been attributing it to the acupuncture. My yeast issue is also improved. I mean, after a long bike ride in spandex and a beer I don't feel anything threatening. My bike seat still irritates me in front (&I'm goign to get a new seat) but it doesn't feel like yeast is going to get in there and add to the problem. Anyway -- so I'm thinking that I was mildly sick. Hope that's all it was.
Yesterday was Beth's 55th birthday ride, 55 miles on 5/5. The start point of the original ride was moved, so it ended up being only 52 miles, with the option to ride around for a bit and finish it. (I may be compulsive about some things, but not that.) I'd been thinking I'd turn around early and ride 35-40 miles..... I had made an arrangement with a new rider to turn around with her, and had printed maps so I could find the way. Well I was lucky that there was aNOTHER rider who wanted to turn around early, because it turned out that I didn't! I couldn't believe it..... I had such a hard time a week ago on the 50 m training ride..... Was it all because of the wind?
Last Wed. the winds were 20-30 mph. The ride was out on the W&OD trail, with hardly any hills. I had a flat & changed it in Herndon, but I don't think I'd been riding on it for long. (There was construction on the trail, and my flat was a couple of miles after that -- and I pulled 2 new shiny & staple thick wires from my tire.) Anyway I turned around in Herndon along with most of the riders, so it was just a 33 mile ride -- and the same old usual 33 mile ride at that! (We ride to Herndon all the time.) But I was exhausted and wakeful that night (like from muscle overuse.) I was sure I wouldn't be able to do the 55 miler to CLifton, which is very hilly.
But I did, and it was not hard. There were maybe 2 hard hills on the way out (almost to CLifton) and a few more on the way back. People passed me going up hills, but sometimes I passed people too, going up.
Maybe the tiredness in between biking days was slowing me down on the bike too -- must have been. Lucky timing for me. OH and also, about yesterday's ride...... no wind, PERfect weather, and just pretty much a blessed day.
Well I hope it's over, because it was starting to worry me. But then Em stayed home sick on Monday with a tummy thing, which she still has to some extent, but she's much better, and I realized that in addition to feeling tired I was also gassy. Now that's not always such an unusual thing for me -- but LATELy my digestion has been the best it's been in 20 years. I've been attributing it to the acupuncture. My yeast issue is also improved. I mean, after a long bike ride in spandex and a beer I don't feel anything threatening. My bike seat still irritates me in front (&I'm goign to get a new seat) but it doesn't feel like yeast is going to get in there and add to the problem. Anyway -- so I'm thinking that I was mildly sick. Hope that's all it was.
Yesterday was Beth's 55th birthday ride, 55 miles on 5/5. The start point of the original ride was moved, so it ended up being only 52 miles, with the option to ride around for a bit and finish it. (I may be compulsive about some things, but not that.) I'd been thinking I'd turn around early and ride 35-40 miles..... I had made an arrangement with a new rider to turn around with her, and had printed maps so I could find the way. Well I was lucky that there was aNOTHER rider who wanted to turn around early, because it turned out that I didn't! I couldn't believe it..... I had such a hard time a week ago on the 50 m training ride..... Was it all because of the wind?
Last Wed. the winds were 20-30 mph. The ride was out on the W&OD trail, with hardly any hills. I had a flat & changed it in Herndon, but I don't think I'd been riding on it for long. (There was construction on the trail, and my flat was a couple of miles after that -- and I pulled 2 new shiny & staple thick wires from my tire.) Anyway I turned around in Herndon along with most of the riders, so it was just a 33 mile ride -- and the same old usual 33 mile ride at that! (We ride to Herndon all the time.) But I was exhausted and wakeful that night (like from muscle overuse.) I was sure I wouldn't be able to do the 55 miler to CLifton, which is very hilly.
But I did, and it was not hard. There were maybe 2 hard hills on the way out (almost to CLifton) and a few more on the way back. People passed me going up hills, but sometimes I passed people too, going up.
Maybe the tiredness in between biking days was slowing me down on the bike too -- must have been. Lucky timing for me. OH and also, about yesterday's ride...... no wind, PERfect weather, and just pretty much a blessed day.
Sunday, March 28, 2010
Chemo Brain OR tamoxifen...?
I was thinking I've been having some mild (relatively) issues with chemobrain -- a lot like what I had before (adhd) but worse. But maybe it wasn't chemo -- lookit this Tamoxifen study:
--------------------------------------------
Schilder CM, Seynaeve C, Beex LV, et al. Effects of tamoxifen and exemestane on cognitive functioning of postmenopausal patients with breast cancer: results from the neuropsychological side study of the tamoxifen and exemestane adjuvant multinational trial. J Clin Oncol. 2010 Mar 10;28(8):1294-300. Epub 2010 Feb 8. (Original) PMID: 20142601
PURPOSE To evaluate the influence of adjuvant tamoxifen and exemestane on cognitive functioning in postmenopausal patients with breast cancer (BC). PATIENTS AND METHODS Neuropsychological assessments were performed before the start (T1) and after 1 year of adjuvant endocrine treatment (T2) in Dutch postmenopausal patients with BC, who did not receive chemotherapy. Patients participated in the international Tamoxifen and Exemestane Adjuvant Multinational trial, a prospective randomized study investigating tamoxifen versus exemestane as adjuvant therapy for hormone-sensitive BC. Results Participants included 80 tamoxifen users (mean age, 68.7 years; range 51 to 84), 99 exemestane users (mean age, 68.3 years; range, 50 to 82), and 120 healthy controls (mean age, 66.2 years; range, 49 to 86). At T2, after adjustment for T1 performance, exemestane users did not perform statistically significantly worse than healthy controls on any cognitive domain. In contrast, tamoxifen users performed statistically significantly worse than healthy controls on verbal memory (P < .01; Cohen`s d = .43) and executive functioning (P = .01; Cohen`s d = .40), and statistically significantly worse than exemestane users on information processing speed (P = .02; Cohen`s d = .36). With respect to visual memory, working memory, verbal fluency, reaction speed, and motor speed, no significant differences between the three groups were found. CONCLUSION After 1 year of adjuvant therapy, tamoxifen use is associated with statistically significant lower functioning in verbal memory and executive functioning, whereas exemestane use is not associated with statistically significant lower cognitive functioning in postmenopausal patients with BC. Our results accentuate the need to include assessments of cognitive effects of adjuvant endocrine treatment in long-term safety studies.
--------------------------------------------
I would have posted the link but not sure how....I've been taking tamoxifen for over a year now, since 2/9/09.
In other news -- I've moved over to thinking that it's the acupuncture fixing my digestion. SOmething else, too -- But I forgot what it was. (NO I'm not trying to be funny, saying that in the posting about cognitive loss. I really forgot.....)
-
--------------------------------------------
Schilder CM, Seynaeve C, Beex LV, et al. Effects of tamoxifen and exemestane on cognitive functioning of postmenopausal patients with breast cancer: results from the neuropsychological side study of the tamoxifen and exemestane adjuvant multinational trial. J Clin Oncol. 2010 Mar 10;28(8):1294-300. Epub 2010 Feb 8. (Original) PMID: 20142601
PURPOSE To evaluate the influence of adjuvant tamoxifen and exemestane on cognitive functioning in postmenopausal patients with breast cancer (BC). PATIENTS AND METHODS Neuropsychological assessments were performed before the start (T1) and after 1 year of adjuvant endocrine treatment (T2) in Dutch postmenopausal patients with BC, who did not receive chemotherapy. Patients participated in the international Tamoxifen and Exemestane Adjuvant Multinational trial, a prospective randomized study investigating tamoxifen versus exemestane as adjuvant therapy for hormone-sensitive BC. Results Participants included 80 tamoxifen users (mean age, 68.7 years; range 51 to 84), 99 exemestane users (mean age, 68.3 years; range, 50 to 82), and 120 healthy controls (mean age, 66.2 years; range, 49 to 86). At T2, after adjustment for T1 performance, exemestane users did not perform statistically significantly worse than healthy controls on any cognitive domain. In contrast, tamoxifen users performed statistically significantly worse than healthy controls on verbal memory (P < .01; Cohen`s d = .43) and executive functioning (P = .01; Cohen`s d = .40), and statistically significantly worse than exemestane users on information processing speed (P = .02; Cohen`s d = .36). With respect to visual memory, working memory, verbal fluency, reaction speed, and motor speed, no significant differences between the three groups were found. CONCLUSION After 1 year of adjuvant therapy, tamoxifen use is associated with statistically significant lower functioning in verbal memory and executive functioning, whereas exemestane use is not associated with statistically significant lower cognitive functioning in postmenopausal patients with BC. Our results accentuate the need to include assessments of cognitive effects of adjuvant endocrine treatment in long-term safety studies.
--------------------------------------------
I would have posted the link but not sure how....I've been taking tamoxifen for over a year now, since 2/9/09.
In other news -- I've moved over to thinking that it's the acupuncture fixing my digestion. SOmething else, too -- But I forgot what it was. (NO I'm not trying to be funny, saying that in the posting about cognitive loss. I really forgot.....)
-
Friday, March 12, 2010
Energy & digestion improvements & breast cancer interpreting!
My energy is better. Not all the time -- I still get tired towards the end of the week.... but that could be from getting up at 6:30 and not getting to bed til midnightish. See but I don't really know what's normal anymore -- not even what's normal for ME. I had been getting tired towards the end of the week ever since we moved here (2003) and started getting up earlier because school starts earlier. (In SOmerville we got up at 7, I think.) Getting up in the dark most of the school year felt really different, really early, and seemed to justify extra tiredness. But now I'm not so sure -- when I was dx'd with breast cancer I was told I'd probably had it for years, maybe as many as 8 years. So stuff like getting tired by the end of the week -- was that cancer, in fact, making me tired?
And my digestion is better. I don't want to jinx myself by writing about it, but my digestion had been giving me trouble for years, progressively worse trouble. I mean beyond lactose intolerance and sugar problems -- with increasing frequency I would just get gassy for no apparent reason. Eating too fast was maybe a factor. It got to the point that eating stuff like beans and cabbage was out of the question, even though "Beano" was a regular part of my diet. Now I'm making cole slaw regularly, and it's great, and I'm fine. We had beans with dinner -- AND I had cole slaw. And I'm out of beano. This is very different.
The day I went to the doctor with my axillary lump (march '08) I also wanted her to test me for celiac disease, because I couldn't figure out what could be wrong with my digestion. It had gotten to the point that it seemed that eating gave me indigestion.
She didn't test me for anything though -- she was alarmed by the lump (and rightly so) and sent me off to take care of it, & told me we'd deal with the other stuff after we'd figured out about the lump.
But now I think maybe my digestion was just one more thing that was affected by the cancer. Maybe the cancer had diverted enough of my energy that there wasn't enough left to do a good job digesting. Interesting, huh?
------------------------------------------------------------
OH and I almost forgot! On Wednesday I got to to my first breast cancer interpreting job since my treatment. I was just thinking of giving back -- but it turned out that I was interpreting for this well known radiation oncologist who I'd been recommended to see -- the only one of the three who'd been recommended to me that I hadn't, in fact, seen (jsut because I found a great doctor first, and was quite sure I was going to stick with him.) Anyway that was really cool, and an honor. I kept my own history to myself during the job, but after the patient left when the doctor started talking to me while signing my form I disclosed my history, because i wanted to tell her what an honor it had been to work with her.
------------------------------------------------------------
BTW it's full spring now -- suddenly -- and I went on a ride with some actual babes yesterday! (as in www.babesonbikes.org. That's my biking club -- check it out.) Most of the snow has melted. I did go shovel the Custis trail 2 weeks ago...... went out and hooked up with 3 other spontaneous volunteers, 2 of whom got off their bikes, and shoveled for 4 hrs til it was passable. Then of course I was too sore to bike the next day -- it was harder than the previous shoveling (icier.)
And my digestion is better. I don't want to jinx myself by writing about it, but my digestion had been giving me trouble for years, progressively worse trouble. I mean beyond lactose intolerance and sugar problems -- with increasing frequency I would just get gassy for no apparent reason. Eating too fast was maybe a factor. It got to the point that eating stuff like beans and cabbage was out of the question, even though "Beano" was a regular part of my diet. Now I'm making cole slaw regularly, and it's great, and I'm fine. We had beans with dinner -- AND I had cole slaw. And I'm out of beano. This is very different.
The day I went to the doctor with my axillary lump (march '08) I also wanted her to test me for celiac disease, because I couldn't figure out what could be wrong with my digestion. It had gotten to the point that it seemed that eating gave me indigestion.
She didn't test me for anything though -- she was alarmed by the lump (and rightly so) and sent me off to take care of it, & told me we'd deal with the other stuff after we'd figured out about the lump.
But now I think maybe my digestion was just one more thing that was affected by the cancer. Maybe the cancer had diverted enough of my energy that there wasn't enough left to do a good job digesting. Interesting, huh?
------------------------------------------------------------
OH and I almost forgot! On Wednesday I got to to my first breast cancer interpreting job since my treatment. I was just thinking of giving back -- but it turned out that I was interpreting for this well known radiation oncologist who I'd been recommended to see -- the only one of the three who'd been recommended to me that I hadn't, in fact, seen (jsut because I found a great doctor first, and was quite sure I was going to stick with him.) Anyway that was really cool, and an honor. I kept my own history to myself during the job, but after the patient left when the doctor started talking to me while signing my form I disclosed my history, because i wanted to tell her what an honor it had been to work with her.
------------------------------------------------------------
BTW it's full spring now -- suddenly -- and I went on a ride with some actual babes yesterday! (as in www.babesonbikes.org. That's my biking club -- check it out.) Most of the snow has melted. I did go shovel the Custis trail 2 weeks ago...... went out and hooked up with 3 other spontaneous volunteers, 2 of whom got off their bikes, and shoveled for 4 hrs til it was passable. Then of course I was too sore to bike the next day -- it was harder than the previous shoveling (icier.)
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