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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.

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.....

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.)

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!)

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.

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!!!!!

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.

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:

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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.

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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.....)
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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?

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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.
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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.)

Sunday, February 21, 2010

Shoveling Accross the Patrick Henry Overpass

Okay, so this isn't exactly about cancer...... but it's a good story! Besides, the fact that I had the kind of energy to want to do this attests to my having gotten my energy back. I feel like I just got it back in recent weeks..... I know I've said that before -- I guess I get it back in increments. Well this time I got a lot back....... I guess I can't really say if I have the energy now that I used to have, but I certainly have WAY more than most people, which is the way I remember my normal energy level feeling. OKay, 'nuff of that. Here's the story:

Did you hear about our snow in the news? We broke a record set in 1899...... We had FEET! And while they handled it much better than usual (we got plowed early!) they didn't handle it quite the way they do in SOmerville MA...... Oh Honey, no WAY. So, all the neighborhood streets that used to be 2 way were suddenly one way -- because they only plowed ONE path through the middle -- and the big streets were plowed down to one lane on each side, instead of 2...... and people had to walk in the streets because the sidewalks weren't done -- even BIG streets.

School was closed the whole week before president's day, because we had 2 feet of snow the weekend before --2/5-6-- and then another foot the next Wed/Thurs 2/10-11. The government was closed all week too -- they opened Friday with a "liberal leave policy" which means they understand if you can't get in but it's your vacation day. Alan went in. He said he spent 5 hours commuting to do 8 hours of work......

Though they did an astonishing job compared to the usual way they don't handle snow, the county couldn't deal with all of it. SO......

There’s a bridge over interstate 66 around the corner from us, which the local middle school kids have to walk over to get to school – and the county didn’t shovel the sidewalks. People were walking in the street. Of course Emily is one of the local middle school kids, and at this point has a lovely arrangement where her 2 buddies on the street come get her every morning and they all walk to school together..... COurse we could drive them for a bit, but ugh; I'd rather shovel for hours on end than be on call for driving duty every day because the shoveling didn't happen.

SO I organized a community effort to shovel a path across the Patrick Henry overpass. We had one side done before school started (last Tuesday, the day after president’s day -- ) which took 5 people. We had to get the other one done too, though, because the kids have to negotiate a dicey crossing to access the other side, and there’s no crossing guard at that corner. (We’ve tried, for years. Cross at the school, is the school & county's solution, where they have a crossing guard……) My neighbor friends whose kids also go to Swanson (Em's school) were maxed out of shoveling, but I got a couple other volunteers. It was going to be slower, but so what? My energy is back (finally!) I could have shoveled that bad boy all by myself -- it just would have taken me a couple of days.

Anyway this woman and I shoveled Thursday morning. She was there for 2.5 hrs and I stayed for another 2 hours after she left. (She was really interesting -- & I wouldn't have met her if I hadn't asked for volunteers!) She answered the request I made through the school PTA listserv -- I also got a response from the neighborhood civic association listserv -- but I never got to meet him. Anyway while I was shoveling on Thursday morning after my school volunteer had left, a county truck pulled over and said they’d do it, I could stop. It was really hard for me to pin them down to a time, though. First they said they didn't know when they could come, and when I asked if they could do it by Monday (tomorrow) they hemmed and hawed and finally said yes..... I really just wasn’t anything like convinced.... so I kept shoveling for another hour and a half, probably, and arranged to come finish up on Saturday with a last volunteer or 2. (Probably more would have showed up -- people seem to be more up for doing this kind of thing on Saturday mornings.)

In retrospect, I guess the sight of a woman shoveling alone with a shoveled path half a bridge long behind her and half a bridge full of knee-high untouched snow ahead of her might have given them a bit of a kick in the butt. :-D They didn’t know I was only alone for the moment (by then I’d had help from 6 other volunteers and had 2 more ready to help this weekend.) They also didn't know that a good sweaty workout is actually my idea of a good time, and that I COULD TOO have shoveled all the way across by myself; it just might have taken me a few days.

But they DID come, to my complete astonishment, the next day! They came and cleared all the snow, just this Friday and Saturday (yesterday.) Personally I think our community effort made it happen…. and that's what I said in the thank-you email I sent to all the volunteers, including the guy I had lined up for yesterday morning who never got to shovel. I do have to admit that I felt a bit...... all geared up and nothing left to shovel! (Though I did shovel that bridge for a good 7 hours, at least, & the last 4.5 were all at one time, Thursday am. See, that's what I mean about the energy coming back.) I guess I could go around shoveling other stuff.... there are a lot of sidewalks in front of people's houses that they haven't done. (YOu don't get ticketed for that here!) I was thinking of telling my bridge shoveling story to my biking club and seeing if I could inspire every Babe in Babes on bikes to go shovel a piece of the inundated bike trail closest to wherever they live...... but then Joan took me cross country skiing yesterday out on the bike trail, and I realized that anyone who x-c skis won't want shoveled patches on the path -- so I'll have to wait for that effort until there are already enough unsnowy patches that skiing doesn't work.

Wednesday, February 3, 2010

Itching!

So, I've been having this itching problem for about 3 months. I keep ignoring it hoping it will go away, but so far no luck with that plan..... So I started putting a moisturizer in my pool bag and lubing myself up after swimming. That did something -- but I find I'm actually itchy WHILE I swim! Luckily one of the pools uses UV technology to somehow kill the germs and consequently much lower levels of chlorine. That one works much better -- AND lubing up afterwards.

However, I've noticed concentrated itchy spots (most noticeable when I use the low chlorine pool and lube myself up with cocoa butter afterwards, which addresses the REST of the itchy spots.) The concentrated spots seem to be over lymph node areas, and symmetrical. Two near my ovaries, two up by my superclavicular nodes, and two in the back of my head, at the nape of my neck.

I'm wondering, why would this be happening NOW? I've been swimming for years. A pool buddy of mine says menopause causes dry skin -- so maybe that's it. However, the itchy spots over node areas makes me wonder if I should be worrying. i put in a call to my oncologist a couple of days ago, but no answer yet....I am hoping to convince him to let me email him with this kind of question. I've left phone messages for him before and not had them answered -- but he DOES answer when it's urgent. I'm thinking he probably can't handle the volume of calls so answers only the urgent ones...... I'm hoping he'll agree to do email, because......

YOu know, cancer follow up is rarely an emergency -- but on the other hand it's nice to feel you have a partnership with your doctor. And I can't really hold ON to stuff for weeks and months -- I mean, there has to be something in between an emergency and waiting til the next appointment -- you know? The nurses told me once that the doctor didn't do email because they'd had people email who should have called, and an emergency was missed........ I'm hoping he'll agree to let me email for non emergencies. They could even have people sign off. I don't like phones anyway......