tag:blogger.com,1999:blog-62399422216597501142024-03-13T09:18:44.287-07:00Lop it off!A chronicle through Nadine's recovery from breast cancer.Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.comBlogger159125tag:blogger.com,1999:blog-6239942221659750114.post-66848367885062867192012-05-10T09:22:00.002-07:002012-05-10T09:36:37.006-07:00In the article below, THIS is what we're worried about, for me. . : ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , '. : ` , '
. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '
osteonecrosis of the jaw
` , '. : ` , '. : ` , '.` , '. : ` , '. : ` , '. : ` , : ` ,
This has ALWAYS been the worry. Teeth and jaw. The fact that a tooth was resorbed is scary and ominous; it's how this starts sometimes. I'm planning to get THREE implants even though they are unbelievably expensive, because they will even out the pressure (chewing and grinding) so that more teeth/implants share the burden -- and ALSO so that the jaw is stiulated.. : ` , '. : ` , '. : ` , '. : ` , '. : ` ` , '. : ` , '. : ` , '. : ` ,
I guess this is news that the FDA is admitting the problem. But it's a bit like water is wet.... not really news. Well maybe it will make dentists & endodontists take it more seriously so that people with family and personal histories like mine who do their best to figure out ahead of time what they should do will be told NOT to do it..` , '. : ` , '. : ` , '. : ` ,
In the meantime I am hoping to save the rest of my teeth (just 21 now) and my jaw..... : ` , '. : ` , '. : ` , '. : ` , '. :
. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '
. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '
` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
New Cautions About Bisphosphonates - NYTimes.com
http://well.blogs.nytimes.com/2012/05/09/new-cautions-about-long-term-use-of-bone-drugs/?ref=health. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '. : ` ,
Concerns about bone drugs were prompted by rare reports of an unusual thigh fracture.
In an unusual move that may prompt millions of women to rethink their use of popular bone-building drugs, the Food and Drug Administration published an analysis that suggested caution about long-term use of the drugs, but fell short of issuing specific recommendations.
The F.D.A. review, published in The New England Journal of Medicine online on Wednesday, was prompted by a growing debate over how long women should continue using the drugs, known as bisphosphonates, which are sold as generic versions of brands like Fosamax and Boniva, as well as Novartis’s Reclast. ` , '.` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , : ` , '. : ` , '. : ` ,
The concern is that after years of use, the drugs may in rare cases actually lead to weaker bones in certain women, contributing to “rare but serious adverse events,” including unusual femur fractures, esophageal cancer and osteonecrosis of the jaw, a painful and disfiguring crumbling of the jaw bone..` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
Although the concerns about the long-term safety of bone drugs are not new, the F.D.A. performed its own systematic review of the effectiveness of bisphosphonates after years of use. The agency’s analysis, which found little if any benefit from the drugs after three to five years of use, may prompt doctors around the country to rethink how they prescribe them.. ` , '. : ` , '. ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , : ` , '. : ` ,
The F.D.A. review analyzes only long-term use and does not address whether a woman should be prescribed a bone drug in the first place to reduce her fracture risk. Because serious complications are so rare, most doctors believe that for women with documented osteoporosis who are at very high risk for spinal fractures, the benefits of the drugs far outweigh the risks. However, some women with moderate bone density and no other risk factors continue to take the drugs for years even though they are unlikely to gain any benefits.
“I think a lot of people are going to come off this drug,” said Dr. Clifford J. Rosen, an endocrinologist and researcher at the Maine Medical Center Research Institute.. ` , '. : ` , '. : ` , '. : ` ,` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
Bones are in a constant state of remodeling, but after age 30 or so, a woman’s bones start to dissolve faster than they can be rebuilt, and after menopause she may develop thin, brittle bones that are easily broken. Bisphosphonates slow this process. The drugs are incorporated into newly formed bone and can persist there for years, long after a patient stops taking them.` , '. : ` , '. : ` , '. : ` ,
The F.D.A. report offered little specific guidance about long-term use, saying that the decision to continue or stop treatment should be based on an individual assessment of risks, benefits and preferences discussed between a patient and her doctor. The agency did say that women at low risk for fracture or with a bone density near normal may be good candidates to stop therapy after three to five years, but older patients at higher fracture risk and bone density “in the osteoporotic range” may benefit from continued therapy.` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
But an accompanying article by Dr. Rosen and others, also published in The New England Journal of Medicine, offers more specifics, concluding that the women most likely to benefit from long-term use of the drugs are those who, after three to five years of treatment, continue to have very low bone density, as measured by something called a “T score” that is lower than minus 2.5. Women with a history of spinal fracture or with an existing fracture also are most likely to benefit from long-term use of the drugs, the researchers concluded.
However, many women who are prescribed bone drugs have been given a diagnosis of osteopenia, moderate to low bone density that is not low enough to be called osteoporosis. These women are unlikely to benefit from long-term use and should probably stop taking the drugs after about three years, the researchers said. ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
It is not clear how many women would be affected based on those recommendations, but many women tire of the therapy and stop taking it on their own anyway, partly because of inconvenient requirements like remaining upright after taking the drugs and common side effects of heartburn, nausea and flulike symptoms. Even so, the researchers estimate that perhaps 60 percent to 70 percent of current users would be candidates for stopping the drugs after three to five years.` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
The recommendations are based on findings from two industry-sponsored studies led by the University of California, San Francisco, that focused on long-term use of the drugs. A study of Fosamax, which is sold generically as alendronate, continued for 10 years, and a study of Reclast, an injectable form of the drug zoledronic acid, continued for six years. According to the F.D.A. analysis, both studies showed significant reductions in fracture risks during the first three to four years of use but little or no benefit with longer use.
In the Fosamax trial, 10.6 percent of Fosamax users suffered a fracture during the first three years of use, compared with 21 percent of those in the placebo group, according to the F.D.A. analysis. But there was no benefit seen among women who continued the drug for the next 5 to 10 years. In the Reclast trial, 9.8 percent of women taking the drug suffered a fracture in the first three years of the study, compared with 20 percent of women who were taking a placebo. By four to six years, the benefit had narrowed, with 8.6 percent of Reclast users suffering fractures, compared with 12 percent in the placebo group.` , '. : ` , '. : ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` ,
The two studies did not show any increased risk of serious side effects with long-term use of bisphosphonates, but experts say the studies simply were not large enough to detect a relatively rare adverse event. Even so, there have been numerous case reports of the unusual fractures and other side effects, prompting widespread concern about the risks with long-term use. No one knows how common the femur fractures are, but estimates have ranged from 1 in 10,000 users to 10 in 10,000. ` , '. : ` , '. : ` , '. : ` ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ,
Women should be reassured that serious complications are rare, said Dennis M. Black, a professor of epidemiology and biostatistics at U.C.S.F. and the lead author of the article that accompanied the F.D.A. report.` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
“The reality is there is a lot of uncertainty in this situation,” Dr. Black said. “The F.D.A. report was very general, and we tried to be much more specific and use evidence from the best trial available. Hopefully people who are using this drug will be reassured.”` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
Dr. Rosen said that even though the F.D.A. report was vague on specific recommendations, he was pleased to see the analysis published.
“It’s a very new thing that they submit a paper to The New England Journal that presents all sides of the argument,” Dr. Rosen said. “I think it’s a good thing, because I’ve been on these advisory committees for years, and we get a big crowd in Washington, but the doctors never see the results."Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-91441387141361337012012-05-03T08:34:00.002-07:002012-05-03T08:50:26.743-07:00TEETHI have an appointment to have a tooth extracted -- which is weird, at our age. The tooth is resorbing -- hollowing out on the inside. The dentist said it's from pressure, from grinding -- which is odd since lots of people do that, and I've been doing it all my life, so why would the tooth suddenly be resorbing now? I do have ONE possible reason..... indirectly caused by bisphosphinates....
` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , '
I had a couple of molars on my left side extracted in preparation for the bisphosphinates, which can cause a LOT of problems with teeth & jaw, esp. if any problems (esp. extractions) happen during and too soon after bisphosphinates are taken. I got advised to have these two molars out so they wouldn't need to be etxtracted during or too close to the bisphosphinares -- back in spring 2009. They had a "poor prognosis," but they were FINE and I take great care of my teeth and they would have been here still, I'm SURE, and for awhile yet .....but I had them out -- the threat to my teeth and jaw was too scary. (Which is ironic considering the problem might be worsened by having had them out....) Anyway, after the left molars were extracted I started chewing most of my food on the right because it suddenly had a lot more <i>grinding </i>surface. So that side suddenly started getting a lot more pressure from chewing -- that was just about 3 yrs ago, early July 2009. The endodontist I saw 2 weeks ago said that the hollowed-out root (in my lower RIGHT molar, where I now chew most of my food) looks like it's been going on for at least 2 years.
` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , '
I came home from the endodontist's and called the oral surgeon immediately -- which is a remarkable thing for me; I never do that. And 2.5 weeks was the best they could do. I told them I thought it was too long..... that it would abscess by then. They said,<i> Well call us if any problems.</i>.... (I really wanted to say "I AM!") But I didn't -- and sure enough it started hurting a few days ago -- which had happened before and gone away, but this time my jaw hurt too -- which was new, and scary, and ironic, considering the bisphosphinate worries that got me here..... which everyone always tries to reassure me about using statistics. (Statistics? That's when you add everyone up and then divide by the # of people. How does it help ME if this issue only happens to one person in a million if I'm IT?) So I called and they prescribed antibiotics, which worked great, and moved my appt up a couple of days -- to tomorrow 11:30am. (Which is of course a sucky time, right in the middle of a bike ride....) I didn't realize it might be an infection til they mentioned antibiotics -- before that when the tooth hurt it was in a throbbing way, and I thought it was probably because the root-hollow was reaching the nerve. I have been refilling cavity-like hole on the side of it, and I can tell when I clean it that it's close to the nerve, so that made sense.... Until recently when it would hurt I'd figure it was time to change the filling.....
` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , ' ` . ' , '
<i>
BTW please excuse all the funny punctuations dotting the spaces between parragraphs. Google seems to have </i>removed the ability to make <b>paragraphs </b>-- and I'm trying to find a way to make spaces in between paragraphs.....Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-53157500050840667592012-02-09T07:49:00.000-08:002012-02-09T08:04:08.195-08:00Tamoxifen WorriesI am not always predictably well these days, I have been noticing -- that's why I haven't been posting rides, and I've even been leaving signing up for yoga classes til the la, a breast cancer drug I'm on. Might actually be dangerous side effects..... I'm going to see if I can move my oncologist appt up and talk with him about stopping the drug early. <span style="font-weight:bold;">Today is my 3 year anniversary of starting to take it.</span> It's supposed to be 5 years, but look at <span style="font-weight:bold;">this: <br />http://www.all-natural.com/tamox.html <span style="font-style:italic;"></span></span><br /><br />I found it after looking up some symptoms I have which I found might indicate liver damage.... so then I looked up tamoxifen and liver damage....of course all drugs go through the liver, so I knew I'd find SOMEthing, but <span style="font-style:italic;">wow<span style="font-weight:bold;"><blockquote></blockquote></span></span>! It's also known to have effects on the bones, joints and muscles. <br /><br />Oh yeah, and I believe I'm taking the standard adult dose -- not adjusted for body size/weight, etc. I thought of this because yesterday I had my blood drawn for a physical and when the nurse took my BP she said "95/80. That would be low on anybody else, but it's probably about right for your small frame." I've always had "low blood pressure" and no one ever made a connection before with that and small body frame/size. The radiation dose was too much for me (and I think that WAS adjusted to body size/weight/frame) and gosh, I can only drink half a beer, usually..... why would anyone think I could take a standard dose of tamoxifen???<br /> <br />My known tamoxifen side effects include:<br /><br />pebbly poop x 1 month (unusual before then,)<br />the shakes, on and off, for a good few weeks -- <br /> increasing frequency and lasting longer. <br /> Last Tues it started w/Ginny's class and lasted <br /> all afternoon <br />Teeth problems -- resorption of lower right molar!! <br /> (The tooth next to it is in danger too -- and the<br /> dentist says implants are not an option given the<br /> bone loss.)<br />Fatigue -- increasing -- this is hard to pinpoint of course<br />Hot flashes -- THIS since the beginning, every half hr while awake, <br /> and waking me a couple of times a night -- on a good night.<br /><br />But I can deal with those things, if it's NOT the right thing to do. HOwever I'm starting to wonder now if maybe it's NOT the right thing.......Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-24454501275117395362011-09-07T07:24:00.001-07:002011-09-07T09:04:49.892-07:00Scary post radiation skin spotIn early August I found a scary skin spot right about where my right nipple used to be..... so in a place that never gets sun but that got a LOT of radiation a couple of years ago. I waited a week or 2, as we had discussed in support group (when you get funky new symptoms, wait a week or 2 to see if they go away or were something non-cancer related before alerting the oncologist.) <br /><br />I frankly thought my spot might be from trauma, a small well defined bruise-type thing from a poke, maybe.... my nerves were cut during my mastectomy and I don't feel much in the skin of the right side of my chest. I feel stuff in the ribs, but frankly, I'm pretty oblivious about pokes and bumps ..... I always have unexplained bruises, and it wasn't til I was in my 20s that I figured out that I don't in fact bruise that easily.... I just ADD all the trauma! (Sometimes I walk into doors and actually THINk to myself <span style="font-style:italic;">That did not just happen!</span> and then I edit it out.... and then I really forget!!<br /><br />But when it didn't go away in a week or two I showed it to Alan and he looked alarmed, which got me really worried..... so the next day I sent this email to my radiation oncologist, who I hadn't seen in a good while (almost a year - since the cellulitis, which he dx'd.)<br /><br />------------------------------------------------------------------------------<br /><span style="font-style:italic;">I have a large discolored spot I'm concerned about, just above my mastectomy scar -- in the area that was radiated. I noticed it maybe a week ago and was thinking it might be a bruise, because it's so large and appeared out of nowhere (and in an area where I'm numb, so wouldn't notice if I poked myself.) However, it's still there, and my husband doesn't think it looks like a bruise. I was thinking I should see a dermatologist, but my husband thought it might make sense for me to have you take a look at it first.<br /> <br />The spot is ~3-4 mm, irregular, spotty, red, and a little bit raised. It's just under 1" to the left of my top tatoo dot (to the right of it from your POV as you look at me.) Would you like to take a look at it? Maybe you'd be able to get me in to see a dermatologist more quickly than I would myself, if you think it looks concerning.....</span><br />-----------------------------------------------------------------------------<br /><br />This miraculous doctor answers email so fast that when I didn't hear from him within a couple of hours I knew he was out of town. I called G-town and sure enough.... so I scheduled a derm appt for just before I left town.... <br /><br />I guess I should back up and explain what was going on at the time...<br /><br />All this was happening in the middle of my LIFE of course..... We were getting ready to drop Matthew off at UVA on Friday 8/19, which was, um, kinda surreal. (He seems happy though. And it's not halfway across the planet, which is nice for us.) Em and I had planned a road trip starting the following Monday. (Alan couldn't take time off work to come -- if he wants to have time to do the family Christmas. I felt a little bad about it but he actually sounded happy to have the time to himself. Said he'd defrost the freezer and give the dog a bath. Hey whatever blows your hair back.... I do have to say, Pinky smells NICE! We were getting to the point where we were thinking we'd have to change her name to <span style="font-style:italic;">Stinky</span>...) Anyway Em and I traveled first to Ithaca and then Boston -- and back in time to spend labor day weekend with Alan before Em started High school. <br /><br />We ended up having to delay our trip start til Tuesday so I could see a derm first, in Bethesda, and we left from there. By then the spot had faded to a light benign looking age-spot-type thing with regular edges, and I was thinking it probably HAD been trauma.... So when the derm said it was benign and due to radiation changes I was already unworried about it.<br /><br />But when we were in Ithaca it got dark and scary again. WTF??? It was dark for a good week or so and then it faded again (mustabin when we were in Somerville) and then it came back again. Who ever heard of THAT??? By then my radiation onc had returned and answered my email and asked me to come in, so I planned to come in on Tuesday -- yesterday. <br /><br />Well I still don't understand exactly how he knew it was benign..... but the doctor's relief was so palpable -- and I trust his judgement -- that I guess it must be benign. He was laughing and happy and kept congratulating me..... (It must suck to have to give someone a bad diagnosis..... I remember well having to give people HIV+ results....) OH yeah and did I mention, he had asked me to call his scheduler and schedule a visit with him, but I hadn't - I was waiting to make sure the spot stayed dark and scary, and thinking I'd call Tuesday am. But instead the doc emailed ME on Monday night and asked if I was coming in, and what time. I guess he accessed his schedule online, because when I came in I had a bona fide appointment.... What a guy! (Now if I could just get my medical onc to do email -- or even answer calls. The nurse answers calls and she's good, but sometimes it's a multipart question for the doctor, and then she says "Do you want to come in and talk to him about it?" and sometimes I was just THERE, so NO.... Anyway, that's another story, and not as nice as this one.)<br /><br />Anyhow about the funky spot -- I had really been hoping to have it OFF because I don't want to repeat what happened with my breast cancer (negative mammogram in 2006, negative mammogram in 2008 -- followed by a diagnosis of stage 3 cancer, and BTW I probably had it for 8 years, and most definitely during both mammograms.... my breast surgeon has <span style="font-style:italic;">shown </span>it to me on the old mammos and even <span style="font-style:italic;">I </span>can see it now....) On the other hand, this doctor is really good and they are likely to be more careful with me because of my history of cancer.....<br /><br />Anyhow.... at this point if I really want it biopsied my radiation onc wants me to see my breast surgeon to take care of that. THIS I hadn't thought of, but because the spot is in my no-lymph-node area, it's better to have HER (breast surgeon) do it than a dermatologist..... Anyway I have to think about that. Not sure if I will schedule an appt with her for sooner or wait til i see her in December....Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-63474495158762035542011-04-10T18:30:00.000-07:002011-04-10T18:57:43.445-07:00update on Zometa/reclast and digestionWell lemme tellya, when I wrote the last post I had no idea. The <span style="font-weight:bold;">reclast <span style="font-style:italic;"></span></span>was the worst of all. I was exhausted for 2 months, at which point I became convinced that I was <span style="font-weight:bold;">dehydrated<span style="font-style:italic;"></span></span>* 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. <br /><br />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. <br /><br />* About the <span style="font-weight:bold;">dehydrated <span style="font-style:italic;"></span></span>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 <span style="font-style:italic;">summer</span>, 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! <br /><br />But after CHristina wondered about <span style="font-style:italic;">dehydration<span style="font-weight:bold;"></span></span>, 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 <span style="font-weight:bold;">reclast <span style="font-style:italic;"></span></span>AND of <span style="font-style:italic;">dehydration<span style="font-weight:bold;"></span></span>.... 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??? <br /><br />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 <span style="font-weight:bold;">reclast<span style="font-style:italic;"></span></span>. 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.<br /><br />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<br /><br />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.Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com1tag:blogger.com,1999:blog-6239942221659750114.post-79022204963982030862011-01-16T11:09:00.000-08:002011-01-16T12:24:42.941-08:00Bisphosphinate 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 <span style="font-weight:bold;">tamoxifen </span>-- 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. <br /><br />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 <span style="font-weight:bold;">melatonin</span>, which never did anything for me before -- and of course in a pinch there's <span style="font-weight:bold;">ambien</span>. 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 <span style="font-weight:bold;">aromatase inhibitor</span> for 2-3 years (I forget) and that has more side effects..... but hopefully not this particular one.) <br /><br />And then there's the <span style="font-weight:bold;"><span style="font-style:italic;">bisphosphinate </span><span style="font-style:italic;"></span></span>-- 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 <span style="font-weight:bold;">teeth removed </span>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. <br /><br />I started taking <span style="font-weight:bold;"><span style="font-style:italic;">fosamax </span></span>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 <span style="font-weight:bold;">vitamin D</span> 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. <br /><br />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.) <br /><br />Anyway back to the bisphosphinates -- I got a prescription for <span style="font-weight:bold;">Boniva </span>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.<br /><br />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 -- <span style="font-weight:bold;">see blog post from 6/25/10.)<span style="font-style:italic;"></span></span> 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.<br /><br />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.<br /><br />SO I'm going to try an IV bisphosphinate -- <span style="font-style:italic;"><span style="font-weight:bold;">reclast (zometa.)</span><span style="font-weight:bold;"></span></span> 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....<br /> <br />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.Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-78759025497710444002010-09-04T22:23:00.000-07:002010-09-04T22:30:37.825-07:00Biking the Blue Ridge ChallengeI'm planning to do this ride on Monday (labor day):<br />http://bikewashington.org/routes/bluerdg/index.htm<br />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....) <br /><br />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!!!<br /><br />Will tell about the hot flash/acupuncture/herb progress in Ithaca next time. Now I've gotta get to bed.Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-3653050329029066402010-07-31T14:32:00.000-07:002010-07-31T14:50:30.164-07:00melatonin & onc problemI'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....<br /><br />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.<br /><br />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?<br /><br />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.....Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-48619078756246520512010-07-06T18:23:00.000-07:002010-07-06T18:32:12.393-07:00HOTHOTHOT -- & 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. <br /><br />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. <br /><br />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...... <br /><br />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 <span style="font-style:italic;">basement</span> is nice & cool. <br /><br />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!!!<br /><br />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!<br /><br />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.)Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-23786836218541996062010-07-01T09:55:00.000-07:002010-07-01T10:05:14.471-07:00energy balancingI 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 <span style="font-style:italic;">that</span> -- yay! <br /><br />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.<br /><br />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. <span style="font-style:italic;">GOD, what I wouldn't do for an uninterrupted 6 hours now!!!!</span><br /><br />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!)Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-75371327430038833192010-06-25T20:11:00.000-07:002010-06-25T20:18:24.243-07:00tiredI’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….. <br /><br />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?<br /><br />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.....<br /><br />Any thoughts or ideas, I'll take 'em! Meanwhile..... I'm tired.Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-23523083797725109232010-05-06T07:00:00.000-07:002010-05-06T07:03:26.689-07:00Long term stage 4 survivalSOmeone 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.:<br /><br />http://www.nytimes.com/2010/04/27/health/27case.html?emc=eta1<br /><br />Isn't that cool? Makes me think of Gabi, same miracle, different ailment. (HIV+ since 1986.) YEAH!!!!!Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-32826877464517674672010-05-06T06:36:00.000-07:002010-05-06T06:59:52.854-07:00Getting 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.<br /><br />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. <br /><br />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?<br /><br />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.<br /><br />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. <br /><br />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.Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-21300196146441427952010-03-28T12:31:00.000-07:002010-03-28T12:38:36.114-07:00Chemo 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: <br /><br />--------------------------------------------<br />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<br /><br />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. <br /><br />--------------------------------------------<br /><br />I would have posted the link but not sure how....I've been taking tamoxifen for over a year now, since 2/9/09. <br /><br />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.....)<br />-Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-14678157521691788382010-03-12T19:34:00.000-08:002010-03-12T20:22:39.468-08:00Energy & 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?<br /><br />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.<br /><br />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 <span style="font-style:italic;">eating</span> gave me indigestion.<br /><br />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.<br /><br />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?<br /><br /> ------------------------------------------------------------<br />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.<br /> ------------------------------------------------------------<br /><br /><span style="font-style:italic;"><br />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.) </span>Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-31548751387911639922010-02-21T12:26:00.000-08:002010-02-21T15:02:24.162-08:00Shoveling Accross the Patrick Henry OverpassOkay, 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 <span style="font-style:italic;">lot</span> 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:<br /><br />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.<br /><br />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......<br /><br />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......<br /><br />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. <br /><br />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. <br /><br />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 <span style="font-style:italic;">when</span> 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.) <br /><br /><span style="font-weight:bold;">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 <span style="font-style:italic;">They</span> 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.</span><br /><br />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.Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-12046801178755162942010-02-03T18:15:00.001-08:002010-02-03T18:26:14.746-08:00Itching!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 <span style="font-style:italic;">that</span> 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.<br /><br />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. <br /><br />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...... <br /><br />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......Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-54114589591781239982009-12-11T11:57:00.000-08:002009-12-11T12:31:32.541-08:00Better and BetterThat's how I'm feeling. It's like I thought I was pretty much back to my old self, and then I got <span style="font-style:italic;">better</span>, all of a sudden, and thought, <span style="font-style:italic;">Oh yeah -- <span style="font-weight:bold;">this</span> is what I used to feel like!</span> (And I've probably even written that before; it happened over the summer too.) Maybe it was happening steadily and then I got set back by the cellulitis and .... I feel like there was some other thing that made me more tired and slow at some point besides the cellulitis, but can't remember what it was.<br /><br />Anyway I suddenly feel <span style="font-style:italic;">awake</span>, when I wake up in the morning, not tired like I wish I could have another couple of hours' sleep -- even though I didn't fall asleep before 12:30 or 1 or so, and the alarm went off at 6:30. Actually, to be fair, I'd been feeling fine when I woke up for awhile now -- but then I'd feel tired after the kids were in school, and wish for a nap -- but not enough to blow off my plans for the short # of hours that they're in school..... Some days I bike (like today,) some days I have a job or two, and try to work in a swim or a good dog walk before or after, and other days are errand days..... Yesterday I dropped Matthew at school, squeezed in a trip to Whole Foods before my physical, stopped at the library and Grand Mart after it, came home with the stuff, went swimming and came home and took the dog for a good hour walk. So that was an errand day with good use of my in between time -- Em's science club after school enabled the walk, though!<br /><br />Anyway the point of that whole description was, I'm feeling well and happy to squeeze lots of things into the day to make good use of my time. For awhile there I'd come in from a bike ride and not want to walk the dog. I'd just be tired, and want a hot bath. This was even as recently as a week or two ago -- I almost fell asleep in the tub a couple of times. Now I feel awake, well -- today I came in from a 35 mile ride and felt happy and strong walking up the hills w/Pinky. (COurse I only got 20 mins of a walk in before Em came home, but I could have done the whole hour walk. Maybe I will...she has a friend over.) It's possible that it's partly because the ride was easy -- there was a slower rider today (still recovering from having been off her leg when it was broken for a few months, a few months back) and the other two of us kept waiting for her at the tops of hills. HOwever, I still think that riding in the cold and on the hills for 4 hrs would have tired me out more a month or two ago.<br /><br />I also wanted to note what I wore on today's ride, because one of the hardest things about biking in the winter is figuring out how to dress to be warm enough. My usual strategy for dressing to be warm (in the rest of my life) is to just wear MORE, but outdoor exercises in the cold weather are trickier.<br /><br />First, the clothes have to be made of moisture wicking material (not cotton.) Otherwise it will absorb sweat, which will then freeze. Also, too many clothes will make you cold just the same as two <span style="font-style:italic;">few</span> clothes. They say that you should feel a bit cold when you leave your house; otherwiseyou might be overdressed. That doesn't always work for me these days, though -- I often get a hot flash just as I'm about to leave, and then I'm happy to get out in the cold, and have no idea how I'd feel without the hot flash.....and can't wait for it to pass without missing the ride!<br /><br />Anyway here's what the temps were today and what I wore. When I left the house it was in the <span style="font-weight:bold;">mid 20s and sunny</span> – and when I got home it was in the <span style="font-style:italic;">high 40s and the wind was picking up</span> -- felt like high 30s, to me, though. I wore:<br /><br />Legs -- Liner under long winter grade tights, w/ lined snowpants on top,<br />Feet – 2 pairs wool socks, gore arctic sox, sandals, toe covers<br />Top – long tank, long sleeved shirt (white Gore fitted one,) <br /> winter grade jacket (yellow PI, ) orange winter vest on top,)<br />Arms – warmers (okay, L arm warmer, lymphadema sleeve on right)<br />Hands – winter grade gloves, & brought shells from other gloves and <br /> put them on halfway through ride (surprised me that I needed them, <br /> but I did!)<br />Head – ear warmers, cowl on top, old glasses (the progressives fog more.) <br /> No sunglasses but that would have worked too. <br /><br />Also I only drank part of one bottle and one snack (banana brd w/ choc bits melted in) I biked 32-35 miles (Mc Lean loop) at a slowish pace -- or a moderate pace with breaks.Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-25344090432144835622009-11-07T15:07:00.000-08:002009-11-07T16:09:21.907-08:00White's Ferry LoopWell I did it, and I didn't fall behind -- not <span style="font-style:italic;">too</span> far, anyway. They <span style="font-style:italic;">helped</span>. <span style="font-style:italic;">Everyone<span style="font-weight:bold;"></span></span> helped. It was very sweet. I thought it would be a matter of their dropping me or waiting for me -- but actually they <span style="font-style:italic;">pulled</span> me! I didn't realize what my sore back was about until the next day. It was from drafting -- because when I draft I'm so close to the biker in front of me that I lean forward to hold the handlebars <span style="font-style:italic;">right by the brakes</span> in case I need to stop instantly. (I wouldn't want to repay someone for pulling me by crashing into them!)<br /><br />The beginning was a bit elaborate. The ride started at 8:30 from Dawson, and got almost immediately into MacArthur Blvd, a heavily trafficked street in DC -- especially at that hour, which is rush hour. I had checked in with some of the other bikers about how they handle traffic, and it turns out that they feel safer riding fast in traffic -- while I feel safer going through it slowly. That meant that I would be at a disadvantage by the time I got to the hills; I'd be behind already and no chance to catch up. (When I did this ride 2 yrs ago I wasn't worried about that. I rode slowly through traffic and the others rode the way they rode, and who cares? I was a strong rider and could catch up later.) <br /><br />JOan came to the rescue (now <span style="font-style:italic;">there's</span> a surprise!) She offered to lead the whole group on an alternate beginning which took the trail instead of MacArthur Blvd. It was the same beginning we'd ridden 2 yrs ago, when we'd ridden a century together (basically the WHites' Ferry Loop with a detour to Purcelville. This will mean something to DC area bikers.... or I guess anyone who likes playing with google maps.....) Nancy (ride leader) declined, because it had too many twists and turns after the bit on the trails -- SO Joan and I planned to meet at 8 and do the alternate beginning and meet up with the larger group after. (Joan was fine with the trafficky part, you understand. This was entirely for <span style="font-style:italic;">my</span> benefit.)<br /><br />Now you have to have a little background information to see the humor in this setup. Most people who know me even a little know that I tend to run late -- that, in fact, it takes a heroic effort on my part to get myself out of the house only 5-10 minutes later than I'd intended, and that I have clocks set fast in different parts of the house to try to help with this..... You should also know that this is one area where Joan and I are compatible, and that when we ride alone together we often start at a, um, <span style="font-style:italic;">different</span> time than we'd originally agreed on. (That century we rode 2 years ago, for example. I seem to recall leaving a good 30-45 mins late -- but I knew I would, and had planned to meet her at her <span style="font-style:italic;">house</span> because of it. It wasn't a big deal -- it was just us, and it was summer, so no worries about running out of daylight, as there were last Wednesday.)<br /><br />So, Joan and I are tardies. Nancy, on the other hand, the leader of last Wednesday's 80 mile ride, is an early bird. The punctuality queen, I called her once. Get there early, she had said in the ride announcement for last Wednesday, and I knew she meant it. <br /><br />So, when I didn't manage to get out of my house until 7:50, I knew I'd have to ride fast. <span style="font-style:italic;">Joan</span> even sounded somber when I called to say I was leaving 10 mins later than I had planned. (It takes 20 to get to our meeting place near Joan's house.) So I hustled, but it still took me 20 minutes. And when I got there, Joan wasn't there! So I called her and she said to go ahead, she'd catch me. (She does that a lot on rides.) Well I kept seeing images of Nancy and the other riders gathering early and deciding to leave early, since they weren't waiting for us. I got to the Key bridge and under it, looked at my clock, and thought, they might have started arriving by now. I rode to the Maryland border, on the Capital Crescent trail, and thought, they're leaving now. I got to the place where I get off the trail when I'm going to see my oncologist and eye doctor and thought, they're on MacArthur Blvd by now. (I was so preoccupied with staying ahead of them that i almost missed noticing that I had gotten there in 50 mins -- it takes me an hour and 15 to 1.5 hrs to get to the doctor's office usually. Admittedly there is a little further to go on streets that I didn't go, and I am usually on my slow bike. Still, I think I was doing well!) Actually I was doing so well that Joan didn't catch me until I was done with both trails -- so I rode the first 12-15 miles by myself. She caught up just in time, actually -- just at the start of the twists and turns, which I would have had to slow down a lot to do, by cue sheet. <br /><br />Anyway -- we rode a ways on our own and then checked in with the group, and decided to take a break at the top of a hill so we'd have time to catch them after we saw them coming. We found a sunny hill and took a break -- but I would not have had time to catch them withour Lynn. Lynn was riding with the group, but she's so much faster that she showed up way ahead of the rest of them -- luckily for me! (And once we started riding I found out that Lynn was using her superior speed and strength to our advantage -- she would ride ahead, pull over and park by the side of the road with her camara, and take shots of the bikers arriving! I will see if I can pilfer a shot or two for here.) <br /><br />It was soon after we caught them that the hills started. I tried to pass people on the flats so I wouldn't fall too far behind on the hills...... I tried to focus on the biking and stay quiet so I could save my air for the uphill journeys. (Maybe that's why people started offering to pull me. It's a really different thing for me to be quiet. Maybe it scared them! At any rate they knew I was worried about it.) <br /><br />When we got a few miles from the ferry I told Nancy not to worry about dropping me at that point; the cue sheet was straightforward, and they could wait for me at the ferry. But just when I was getting ready to ride on my own, Marla slowed down and invited me to hop onto her wheel. <br /><br />This happened several more times on the ride, and I did get to talk a little..... especially at the lunch stop! And I surprised my kids by getting home a lot earlier than I had said I might.... I had said maybe 4:30-5, but in fact I got in at 3:40, only about 10 mins after Matthew.Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-77178039016664706052009-10-29T19:31:00.000-07:002009-10-31T11:14:32.179-07:00Acupuncture updateI’ve been feeling for some time like the acupuncture I get in Vienna with Dr. Zhu isn’t working really. The first two times it felt like it caused indigestion. The doctor thought it must have been coincidental. This time (5th time) my digestion was definitely fine before I went there – and I felt something happen while I was lying there with the needles in. Some feeling both in my gut and in my mid back, behind it. She did have a needle in my belly. It’s not digestion exactly but it's around there. It's still bothering me. I wonder what it is! Anyway I had continued to go to her because of the insurance, even though the results of her treatment haven’t ever wowed me. But today I made an appt. to see Dr. Tien on Monday. His treatments cost way more, but they work. I’ve had 3, and felt like a million dollars the next day, every time. I don’t know what it is, but he <span style="font-style:italic;">has<span style="font-style:italic;"></span></span> it, and she… I’m just not sure she’s doing the right thing for me.<br /><br />In the end, if his treatments cost 3-4x her treatments, and they work, and hers don't, it's a better value to go to him ANYway. If hers don't work EVER, I can't even do math about it! It's just a waste of time to go to her -- or worse, it may be causing problems. That's where I'm at now, anyway.<br /><br />------------ ----- ------------ ----- ------------ ----- ------------ ----- <br /><br />I've got a biking update too. (Anyone reading this interested in hearing about my biking progress, or to I babble about it too much? COurse you can always skip it if you like. I think a <span style="font-style:italic;">couple</span> of people are still reading.....)<br /><br />I reached a new milestone yesterday, my first metric century since BC treatment -- 62 miles and change. Out to Leesburg and back on the trail. I did fine, and kept up with the group. (Can I tell you, my biking is SO MUCH BETTER since the hospital visit! A nurse called me today from the hospital to check on me and I told her about it -- told her they'd better keep an eye on their vancomycin or the Tour De France people will be after it!) Anyway I did great, but there were only 2 hills, and I was careful to stay on people's wheels anytime I felt like I might be tiring, so that I would keep up instead of dropping back.<br /><br />The thing is, this was a training ride for the White's Ferry Loop next Wed. That's an 80 mile ride. I'd like to ride it. I've only done it once, a little over 2 years ago. It's a <span style="font-style:italic;">lovely</span> ride, starting in VA, getting into rural MD, over a ferry, and back to VA with a stop at a lovely café for lunch, which serves lemonade sweetened with agave nectar in the summer. HOwever -- I don't remember how <span style="font-style:italic;">hilly</span> it is. I just wasn't worried about hills last time I rode it -- as long as there were no plummetting downhills I was FINE. GOOD at uphills, in fact; I used to catch up on the uphills after having had everyone fly by me on the freefalls. But now.... If there's a hill here and there, I'll be able to stay with the group, I think, but rolling hills will really slow me down. Rolling hills are the worst, though, because I don't get a chance to catch up. I don't want to get dropped early on and be on my own.... but I also don't want people to feel stuck with waiting for me. So -- while I bet I can DO the ride, that's my dilemma.<br /><br />ON the other hand, how else to increase my lung capacity so the healthy tissue can compensate for what's been lost, but to ride hills? I have already prepped the kids about accommodating the long day I will need for the ride next Wed. Matthew will have to catch his bus that morning, because I'll have to leave by 8-8:10am -- and Em will probably come home an hour or two before me. <br /><br />Actually someone told me that there may be a swimming way to increase my lung strength -- breathing every other stroke instead of every stroke. I tried it today. It's <span style="font-style:italic;">hard</span>! I could only do it for 4 strokes at a time. So I'll keep working on that.<br /><br />I'm swimming stronger, too, BTW, since the hospital. ON Sat I swam 100 lengths -- I jsut wasn't DONE after a mile! Today I got into the water a little late, only 42 mins before the whistle. I usually swim a mile in 45 -- sometimes 50 mins. But I swam it in 40 today, and kept on going til the whistle.Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-16133059398874964132009-10-23T13:57:00.001-07:002009-10-23T18:39:52.865-07:00CellulitisWell I meant to post an update about the acupuncture next, but...... before I got to it something else happened. <br /><br />For about 2 weeks I'd been feeling a new band of tightness along the inside of my right arm. It was a lot like the post radiation roping and tightness -- kind of like my tendon was trying to turn into a rubber band. I didn't really get why I'd be feeling that kind of thing again now, but what do I know? I figured I'd pull back against it, swim it out. That worked before. SO last Fri and Sat I swam a mile each day. The tightness stopped pulling after a few minutes of swimming, but there was a redness that didn't seem to be going away. Then on Sunday there was a hard red spot on my arm in the middle of the band, just above the inside of my elbow. <br /><br /><br />So I emailed the PT I'd had a few sessions with in Jan/Feb (before we figured out that our insurance didn't cover her & I had to stop) and I emailed my radiation onc, even though it's been 7 months since I finished radiation, and described the red protrusion on my arm. He answered promptly and predictably: "Can you come in and show me your arm?" That was Monday afternoon. On Tuesday I had 3 jobs planned, and thought I'd swim in between job #2 and #3, and see the doc after the last one, at about 2:15-2:30. I warned Em I might not make it to pick her up at 3:30, after her after-school activity. Oh boy, was that an understatement!<br /><br />By Tuesday morning I had decided I didn't like the look of the thing on my arm. YOu know how sometimes in the middle of the night problems that seem small and insignificant during the day feel big and ominous? Often they quiet down by day again, but sometimes for me the nighttime questions are real questions that perhaps the chaos of my daily life had been keeping away. ANyway Monday night I was massaging my red spot, thinking it was probably something the PT could rub out, when a little voice in my head said "Hmmm, it's red, swollen and hard. What could it be?" I used to interpret for my nurse friends at the clinic, when I worked as an AIDS educator, often enough that I knew what they were going to say before they said it. This thing had all the hallmarks of an infection. <br /><br />So the next morning when the PT called me back, I said, "Thanks, but I think this is one for the doctor." I also called my doctor's office, and asked if I could come earlier than 2:30. A voice in my head said "If I were a doctor and someone brought me an arm that looked like this, I'd want them in the hospital on IV antibiotics." I almost packed a small overnight bag in my car, with at least my eyedrops, but then I thought, <span style="font-style:italic;">Nah, I'm not a doctor, what do I know?</span> <br /><br />I scooted in to see my doctor after job #1, at about 9:45. He came right out and met me in a room. He took one look at my arm and said "Okay, this is serious. YOu need to go to the ER." I was not happy to hear this.... I've only ever been to the ER for my kids, and always had to wait, and wait, and <span style="font-style:italic;">waaaaitttt</span> -- the better the patient looks, the longer they wait. And I always look <span style="font-style:italic;">fine</span>. Even when I was in <span style="font-style:italic;">labor</span> they didn't believe me..... When I went to the hospital to have Matthew I arrived pretty sure it was <span style="font-style:italic;">time</span>, but got delayed by the woman taking insurance info, who said, "Yeah, this is your first, right? They all think it's urgent -- but it could be two weeks!" So.... I had always been thinking I'd like to try having a natural birth, but when I got to the midwife, I said, "YOu know, I might be interested in some pain meds, actually, if it really might be awhile." And she checked me and said "Too late, just push." <br /><br />So this is where my dismay about going to the ER was coming from..... but this time was different, because my doctor walked me over to the ER. (This is a <span style="font-style:italic;">great</span> doctor -- too bad he's my radiation onc and that's over with.....you want a doctor like that <span style="font-style:italic;">all</span> the time, you know?)<br /><br />When we got to the ER the doc said to the guy on duty "She looks good, but this is an emergency." THey took me in right away. My doctor also went in and talked to someone -- gave them my history or something. What a guy!<br /><br />That was Tuesday morning. I was in the hospital until yesterday at about 3pm. (Yeah, I know -- I shoulda listened to that inner voice and packed that bag....) It's cellulitis, which sounds deceptively like cellulite, but is <span style="font-style:italic;">not</span>, as Matthew guessed, <span style="font-style:italic;">butt fat on my arm</span>. It's an infection. It's dangerous! It might have been caused by my <span style="font-style:italic;">picking my cuticles</span>. Yikes! On my right hand, that is, because I have no lymph nodes in my right armpit. (Holy shit, I am going to have to figure out how not to do that!) You can't have manicures on the hand attached to the no-lymph-node arm. I didn't know that, but I might have been told; I am not tempted by manicures, so I wouldn't have paid attention. However, the picking is similar, if you think about it.....<br /><br />So I spent Tuesday in the ER and Tuesday night through Thurs in a hospital room. I got 250 mg vancomycin by IV every 12 hours, 5 times. Then they sent me home with a prescription for 2 weeks of keflex. I can't imagine how one little red pill a day is going to do the job of 6 hours* of IV antibiotics...... The infection doesn't look any better to me, just different -- more contained, and taking up a smaller area, but harder and firmer, so that it burns when I extend my arm all the way. (I can still do that, though -- no restrictions. I am allowed to ignore the pain -- however, I was also told that pushing through the pain wouldn't speed up the healing. Yeah, that's my usual strategy...*In all fairness I have to admit that the antibiotics are usually given in an hour each dose, so that would be 2 hrs a day. I was starting to get a reaction, though, and needed it administered more slowly, with a benadryl. Reminded me of how I had to get cytoxan. Just my body on drugs I guess -- but of a lightweight that way.<br /><br />Em had a hard time with my being in the hospital, and Alan and Matthew gave up some stuff -- Alan had to cut his workday a lot, and Matthew missed a ball game because he didn't have a ride. Thank goodness he has a friend who <span style="font-style:italic;">drives</span>; that's how he got home from his after school stuff every day! And I was not pleased initially -- I had to call work and explain that I was bailing on jobs #2 and 3 at the last minute! But then it got interesting. <br /><br />They did an ultrasound of my vein to make sure there were no clots. The guy doing it was learning and the more experienced guy was right there with him directing him so I got to learn too -- and as soon as they got past my clavicle I got to turn my head and watch the ultrasound too. And <span style="font-style:italic;">then</span> when I got to my room I had a roommate who was an elderly Spanish-only speaker. And there I was, a Spanish interpreter who felt fine and hadn't gotten to do her last 2 hours of work for the day! I worried that it would be a problem, confidentiality-wise, for me to interpret for her, but when the doctors came in and used the phone service instead of me, the only thing they had for privacy was a curtain, so I heard everything, in two languages. So I interpreted for the nurses, technicians, nutritionist, etc. (I assumed that the docs have to follow protocol.) The nurses told the next shift of nurses about my offer, in their report about the patients on the floor. It was fun. <br /><br /><br />After I got home I found an interesting thing: I had been on a bike ride on Monday, and I went on another bike ride today. (I asked, no restrictions on activity.) I had been slow and struggling to keep up with the group on Monday, and my knee had started giving me trouble on uphills. I'd had to cut the ride short -- to 30 miles, when I'd been planning to ride 40. (I'd been riding more slowly the previous 2 weeks, losing ground, but I didn't expect to find a specific cause....) I went to the chiropractor in the evening and was surprised to hear that there wasn't anything seriously wrong with my knee...... he adjusted me and gave me exercises though. But then <span style="font-style:italic;">today</span> I rode great, no problem riding with the group for like 30 miles. (I mean it didn't even <span style="font-style:italic;">feel</span> like <span style="font-style:italic;">keeping up</span>!) Today's ride was a 50, but I decided to skip one of the extra loops, so my ride was 43m. That was about where I had been at with my riding until a few weeks ago, when I started getting tired and slowing down for no apparent reason. <br /><br />Well who knew? Apparently an infection DOES slow you down! I think I was also waking up more tired and sometimes nauseous in the month or two or three before my cancer was diagnosed. All those blood vessels diverted...... my body <span style="font-style:italic;">missed</span> them! I feel like these things would have had to work harder to slow me down in the past, when I was younger. (Is it harder to detect cancer in kids, I wonder, because of that? Or maybe just high energy kids?)<br /><br />Anyway that was my hospital adventure. It was fun because I kind of like medical stuff -- but I would have preferred to go the week before when we had 4 days straight of cold rain; it was NICE out the 3 days I was in the hospital! (I got out for walks -- but just once a day, for less than an hour.)<br /><br />I came home with 2 weeks' worth of keflex. They tell me it won't shrink down for 2 weeks, and will hurt for a month. It only hurts when I touch it or extend my arm all the way out, though.Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-16058354645334299762009-09-10T10:07:00.000-07:002009-09-10T10:27:42.971-07:00Chinese MedicineMy radiation burn is back to just about normal, BTW. I saw the doc Tuesday and he was happy about that. It's still itchy, but those bumps I wanted the doc to look at were gone -- which he said is good; when the cancer returns the bumps stay. Mine were itchy.... There is still some itchiness -- got to find where I put that calendula ointment Janet gave me.....<br /><br />When I was in Ithaca with the 3 day viral thing, I went to see Lenny's CHinese doctor -- because of the viral thing which I wasn't sure was viral. And I learned something interesting. She took my pulses and said she felt a liver imbalance. I thought at first that it was from all the chemo, but she said, actually she's worked with a number of breast cancer survivors, and we tend to have liver imbalances -- and SHE says that this type of imbalance predisposes you to breast cancer, and her thought is that we've always had it, or had it for a long time. <br /><br />She said I need to protect my liver, and recommended I quit drinking and eating fatty heavy foods. I said okay, but I don't really eat those foods, and I wasn't drinking more than one drink a few days a week (okay maybe every day when I was in New Mexico, but usually it's a max of 2 days a week -- and often none.) So I said, sure I'll stop, but that's a little change; I don't think it will fix any imbalances. She said, yes, that's a little change; the big change is emotional balancing. She asked me about emotional traumas in my life. I couldn't think of any.<br /><br />However, I have been paying attention since then -- and i do have a hard time not taking it in when the kids throw their emotions at me. I have to learn to protect myself from that. I have learned not to take it in when Alan throws his emotions around, and that took a long time, since it happens so seldom it can be quite scary. But the kids.....<br /><br />She recommended meditation and yoga, and qigung, which Janet started teaching me. But I wanted something more directed, so I don't fall off the wagon. It's too important; she thinks this is the way to prevent recurrence -- and Western Medicine has nothing to offer for that except tamoxifen, and maybe bisphosphinates. The balancing thing comes at it from a different angle too. SO she said acupuncture. I would <span style="font-style:italic;">totally</span> go to her if we lived there -- because it was so clear that she knows her stuff! So I asked if she knew anyone here, and she gave me the name of a Chinese doctor who contracts for NIH. I have my first appointment with him on Monday. We will see......<br /><br />We'll see if he has the experience she has with breast cancer survivors -- I'm a little worried that breast cancer survivors may gravitate more towards a woman, and so he wouldn't have much experience with them ........ Also I know he will cost more, for starters because of the cost of living here vs Ithaca...... I hope insurance will offer something -- but I'm going to do it regardless. I will know if it works, I think. I had acupuncture once before, for energy balancing (which I imagine is very similar) and I sure felt <span style="font-style:italic;">that</span>! Anyway my appt is Monday, and it's in Bethesda, a nice ride (yeah just what I need, one more doctor on the Capital Crescent trail!) It's just 4 miles beyond the trail. <br /><br />It makes sense to me that Chinese medicine might have something to offer with preventing recurrence, where Western Med really specializes in sending the big guns when there is obvious cancer present. It really resonated for me when the doctor said "Chemotherapy, radiation, and surgery is the easy part. The hard part is preventing reccurrence." I know not everyone will agree that going through those treatments is easy from the patient's point of view -- though does express to a large extent how I felt/feel. HOwever -- she may have meant from the point of view of looking at what there is that can be done, what there is to choose from. I think that's largely why going through it was easy for me (well that and the biking.) It's important to me to do what needs to be done to fix a problem, and the solution was so clear. Now....... like she said, this is the hard part. I just hope he gets it (the bethesda doc) like she seemed to. Maybe I can see her once a year too.....Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com1tag:blogger.com,1999:blog-6239942221659750114.post-781940563532139112009-09-02T19:17:00.000-07:002009-09-02T19:31:43.124-07:00Radiation Burn ReturnOf course it turned out that I was in fact sick (surprise surprise! to no one but me, probably.) Perhaps the symptoms mimicked my taxol side effects because my body remembered them, someone said last night. (It sounded more plausible the way she said it.) Yesterday I was clearly better but not quite all the way -- today I do feel all better though. TOo bad we only have a couple more days here.....<br /><br />I have another new thing, though. Not sure if this is because of the illness or the herbs Lenny's chinese doctor gave me for them (those are the two most plausible guesses so far) but my radiation burn is back! It came back MOnday. <br /><br />I mean, my radiation was done on March 20th, and it left a nasty looking burn that took a month to heal after that. But still it's been all better for months -- just a little browner than the skin around it. And suddenly Monday night it felt itchy -- so i checked in the mirror and it was red and angry looking! I thought at first it must be because I had stopped oiling it for a couple of days while i was sick -- but I started again and the burn area continued getting worse. NOw it has itchy raised bumps along the upper edge and behind my armpit. I emailed my radiation onc, who is wonderful in person and always responds to my emails right away -- but all he would tell me is that I need to come in. (I knew he would, too......) SO I have to call tomorrow and schedule a visit for Tuesday -- just what I want to do with my time on my kids' first day of school..... and really, what's he going to do anyway?Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-78544671374679730662009-08-30T15:18:00.000-07:002009-08-30T15:25:57.368-07:00Aches and Pains in IthacaGot to Ithaca yesterday for my first visit here in 2 yrs and almost immediately started feeling achey and chilled. My first thought was, it's viral, but it hasn't moved in the last 24 hrs. Not better, not worse. Like when i was on taxol a year ago. Lenny thinks maybe it's an adrenal crash. Is it possible that could cause the same symptoms as taxol? <br /><br />I don't know anything about adrenal crashes. Lenny has a chinese medicine practitioner he thinks is great at diagnosing and might be able to help with acupuncture. I'm going to see if i can get in to see her tomorrow or something -- it would be nice to at least have a sense of what this is!<br /><br />I did bike my first comfortable over 50 mile ride since chemo, Friday, and they yesterday I drove here -- about 320-330 miles. I do have a little sore spot under my back/shoulder bone that started at the end of the drive, but the rest of this feels completely different. <br /><br />Could it be that I couldn't deal with all the side effects of chemo when i was on it, so some of it waited? THat's happened to me with emotional things before.... I didn't know I could do it with physical things, but if it turns out I did that has kind of neat implications for keeping the cancer away -- or in check -- now and in future!Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0tag:blogger.com,1999:blog-6239942221659750114.post-26289067317884352582009-08-08T12:34:00.000-07:002009-08-08T15:04:17.098-07:00Rosa Won!I must have blogged about Rosa before..... she's on my list of "heroes" on the side, so if you want a quick description of who she is, take a peek. I used to bike with her -- but she started training for the senior games around when I started chemo, so I couldn't keep up anymore....... but she sped up more than I slowed down; most of the younger bikers (you know, my age) haven't been able to keep up with her either, for the last year since she started training. <br /><br />Anyway, lookit this, she won! <span style="font-style:italic;">She</span> didn't believe me, but I <span style="font-style:italic;">told</span> her she might really win! <span style="font-weight:bold;"><br /><span style="font-style:italic;"><br /><span style="font-weight:bold;">Rosa Seemann crosses the finish line first in both the 20K and 40K races at the 2009 National Senior Games, the "Senior Olympics," this week. Her times place her fifth overall in a field of 244, aged 50 to 89. She is 72 years old. She will compete in both a 5K and a 10K time trial on Monday. Sr Games: http://www.2009seniorgames.org/ BoB: http://www.babesonbikes.org/</span></span></span><br /><br />And they say <span style="font-style:italic;">I'm </span>inspiring!!! <br /><br /><br />Meanwhile -- <br />I'm feeling better. Yesterday I biked 35 miles, walked 3 m of hills with Pinky, and then swam half a mile -- but the big change is, I wasn't tired during or after these things. When I was done swimming I played with Em and her friend going off the diving board. I have never stopped biking/swimming, etc, but I haven't had the energy to play for awhile. (Hey you've got to have your priorities.....) I biked faster on Wednesday, 46 miles in almost the same time as the 35 yesterday (which is why I did more stuff after, yesterday. That and <span style="font-style:italic;">I wasn't tired</span>!)<br /><br />And now -- one more dog walk and hopefully a swim too, and tomorrow we're off to New Mexico! Back on the 18th. <br /><br />I'm glad I seem to be getting my energy back before the trip -- but I wonder, will that mean I get restless if I don't get my wiggles out well enough? Might it be less of an issue because their whole family is athletic?Nadinehttp://www.blogger.com/profile/11028836025849165753noreply@blogger.com0