They showed up on the MRI of my left breast that I had last week -- but I had already been feeling them when I breathed in deeply. I got sick the week after I was in Boston, and even after I finished the antibiotics and the inhaled steroid and stopped coughing and wheezing (that took a lot longer and had never happened to me before) and got allllll better -- still I have had this lingering feeling deep in my lungs when I breathe in deeply. It's a cold/tight feeling, like when you have bronchitis verging on pneumonia -- except that I'm not sick, not at all.
I had seen my radiation onc about this already, a couple of weeks ago, and he had declined to scan me, saying that my lungs sounded to him (when he listened with the stethoscope) like the lungs of an athlete. The thing is, they SHOULD! But that doesn't mean there's nothing wrong with them. My hope is that it means I'm going to get through this better than expected -- just because that's what all the athletic stuff has meant for me so far.....
ANyway so I had a breast MRI last week, & when I saw the breast surgeon on Tuesday she told me that the breast is fine, but there are 3 spots on my lungs which look to be consistent with radiation scarring. I had the radiation onc look at the MRI as well, and he thinks so too. As it happened I went on a hard bike ride the day before I heard back from him, so when he asked me how I felt I had some things to tell him.....
I've been riding pretty well for the most part, though I am not riding in front these days -- I've been able to ride with my usual par riders for say half of a 30+ mile ride, and then with the slower ones for the other half. That's been feeling reasonable to me -- I figured chemo fatigue, and was thinking it would get better in the next 3-6 months maybe. However -- I haven't ridden many hills. I used to ride hills, but I didn't love hill rides, and my knee seemed to be complaining at the beginning of my treatment - so most of the rides I've been riding since my diagnosis have had some hills but not many.
SO I figured that there's really no mystery about why I've been lagging on the hills lately. HOwever, on yesterday's ride I realized that there is more to it than just being out of hill riding shape. The ride I was on is a special annual thing, out in Marshall. It's very hilly, so that 32 miles count for a lot more than they would normally....... It was only the 2nd time I'd ridden it, and last year I was on chemo, so I rode the shorter (20 mile) option. I had really hoped I'd be able to ride better this year, two months out from treatment (and 4 out from my last chemo!) so I rode all 32 miles, but it was frankly brutal.
It was the hills, and it was really different from anything I've experienced before -- though I've been feeling it in bits and pieces lately, a hill here and a hill there (since that's all the hills I've been riding really.) Usually hills are a challenge, but fun. Usually I don't like the "hill rides" because it's a bit scary going downhill fast. The joke about me on hills used to be that since I braked on the downhills I had to catch up on the uphills. I DID, though -- I often passed most of the other riders on the uphills, which was the only way I managed to stay with them, since they all passed me on the downhills. This wasn't like that. Hasn't been for awhile, I realized......
This time I struggled biking UP the hills, even the moderate ones, and the trouble wasn't my leg strength; it was my lungs. I even walked up one hill -- and I finished the ride last, just behind a couple of new riders. UNderstand -- it's not that I need to be fast -- but I'm unable to ride with the people I used to ride with, because I just can't keep up with them -- and I couldn't even get to know the newbies on this ride (usually the one perk of this new slower pace of mine) because I didn't have the breath to talk to anyone really. It was a struggle to just keep up...... See, keeping up was important, because Nancy and Marla were waiting for the stragglers at every turn so that we wouldn't get lost -- and I would have felt so bad about slowing them down if I hadn't been able to keep up with the new riders who were rightfully riding in back. (Yes I know, I have a reason to be slow too -- but I'd only just heard about the lung spots the day before..... so I was only just starting to understand that.)
Then today I swam, and the pool was overchlorinated. It was the indoor pool, which had been on the fritz for almost a week, so they're just getting the chlorine levels up. The chlorine in the water was so strong that it stung Mom's eyes and made the skin on my legs and arms itch........ and I kept getting out of breath. I suppose I haven't been swimming the mile straight through since my month off due to radiation scarring -- but today I had to take so many breaks that it took me nearly an hour to swim my mile. The only time that's happened before was at the outdoor pool last summer when it was overheated and I needed to take breaks to cool off........ This time I think there was too much chlorine in the air. I guess it's good timing, season-wise, because the outdoor pool is just open, so I'll be able to swim outside where the air is fresh despite the chlorinated water. Now if they would just keep the water temperature at or below 83°.....
Thursday, May 28, 2009
Thursday, May 14, 2009
teeth and vigilance
Those are two different topics. The tooth update is, teeth 15 and 18 are going, though I suspect they'd have quite a number of years if I left them in -- just can't promise 15-20. The periodontist was quite sure; clearly he thought it was a no brainer. He gave the teeth a "poor" prognosis for the next FIVE years! He also said that sometimes he gives teeth a "hopeless" prognosis, and then a few years later they are in exactly the same place........ Anyhow, teeth 15 and 18 are my furthest back molars on the left, since the wisdom teeth are long gone. And I had a crown put on another tooth, yesterday. That was #14. It's a temporary crown; I go back for the permanent one in a week and a half. (They have to make it.) It's quite good, I must say -- feels exactly like my tooth, except a little rough.
The vigilance is.... I'm not sure the right choice of title (though frankly I'm not sure how many people are still reading this anyway.)
I went to see my radiation onc today because I have a funny cold tightness when I breathe in deep, like when I have bronchitis-becoming pneumonia. Thing is, I don't really have any other symptoms....... and he had told me that 10% of my lungs would be affected by the radiation.
So today he listened to my lungs and said that they sound like the lungs of an athlete. (And so they should!) He said there are going to be some changes, some things that feel different, because I'm "just done" with radiation. He explained that he would still call a couple of months out "just done," and that there will be more changes in the next few months. I tried to get him to tell me what kind of changes, but I guess there's a lot of variation -- all I got was, the pectoral muscle may get somewhat hard and sore -- and it may get tighter. (Swimming will help with that -- but he said it might happen anyway.)
The other thing he helped with is my confusion about which doctor to turn to to check out which sort of issue. He said basically anything that I get concerned about in the next 3 months, I should try him first, because it's so soon after radiation. I have his email address, so I can just shoot him an email -- that's how we worked out today's appointment.
Then the final thing he helped with was my thing about how to find a cancerous recurrence in the radiated area, should one appear. He described them, but you know, I missed that stuff before..... it SHOULD be easier to find without a breast, but who the hell knows? SO he said, first of all, I should see the breast surgeon every 6 months after my MRI or mammogram, because she's great at finding stuff in confusing breasts. (Indeed, she did show me my cancer in my old "negative" mammograms -- BOTH of them.) He also said that I could schedule an appointment to see him on the same day, and he will check out the right breast post-radiation area -- since he knows well the difference between a radiation scar and cancer. (He even said that if I made an appointment and didn't show up he wouldn't be upset -- say if I was just pretty sure everything was fine. Now why can't all doctors be like that.....?)
So nice to get clarity. One more doctor to be grateful for. I have a fantasy of making up a thank you card with pictures to send to all the doctors who helped me -- and everyone else, if the cards aren't to expensive or difficult to make. Maybe this summer.
The vigilance is.... I'm not sure the right choice of title (though frankly I'm not sure how many people are still reading this anyway.)
I went to see my radiation onc today because I have a funny cold tightness when I breathe in deep, like when I have bronchitis-becoming pneumonia. Thing is, I don't really have any other symptoms....... and he had told me that 10% of my lungs would be affected by the radiation.
So today he listened to my lungs and said that they sound like the lungs of an athlete. (And so they should!) He said there are going to be some changes, some things that feel different, because I'm "just done" with radiation. He explained that he would still call a couple of months out "just done," and that there will be more changes in the next few months. I tried to get him to tell me what kind of changes, but I guess there's a lot of variation -- all I got was, the pectoral muscle may get somewhat hard and sore -- and it may get tighter. (Swimming will help with that -- but he said it might happen anyway.)
The other thing he helped with is my confusion about which doctor to turn to to check out which sort of issue. He said basically anything that I get concerned about in the next 3 months, I should try him first, because it's so soon after radiation. I have his email address, so I can just shoot him an email -- that's how we worked out today's appointment.
Then the final thing he helped with was my thing about how to find a cancerous recurrence in the radiated area, should one appear. He described them, but you know, I missed that stuff before..... it SHOULD be easier to find without a breast, but who the hell knows? SO he said, first of all, I should see the breast surgeon every 6 months after my MRI or mammogram, because she's great at finding stuff in confusing breasts. (Indeed, she did show me my cancer in my old "negative" mammograms -- BOTH of them.) He also said that I could schedule an appointment to see him on the same day, and he will check out the right breast post-radiation area -- since he knows well the difference between a radiation scar and cancer. (He even said that if I made an appointment and didn't show up he wouldn't be upset -- say if I was just pretty sure everything was fine. Now why can't all doctors be like that.....?)
So nice to get clarity. One more doctor to be grateful for. I have a fantasy of making up a thank you card with pictures to send to all the doctors who helped me -- and everyone else, if the cards aren't to expensive or difficult to make. Maybe this summer.
Tuesday, May 5, 2009
Eyes and Teeth
The eye thing is just an update. I'm going to go back on xalatan, which I'd been off for 2 months. The pressure in my left eye was up today -- only 17/18, which is within normal range for most people (10-20 is the normal range) but I've been told mine needs to stay in the low teens. That was my Boston eye doctor who told me that. My local eye doctor said, maybe not -- 17/18 might be okay. I was diagnosed with pressures of 35, he pointed out, and 17 is half of that, and we won't really know if it needs to be LOWER until I've gone through say 10 years of pressures of 17 and start to have a problem...... ha ha, like I'm going to wait for that.
I remembered that my pressures tend to be higher at my winter appointments. My doctor showed me that one winter when i worried about it. He said, look, happens every year -- probably it will be better at your next pressure check -- and indeed it was. Well today it occurred to me that the higher pressures might be due to caffeine, not winter. I think I have seasonal tiredness, and use caffeine in the mornings in the winter, and not really any other time -- except now. It's not really a big deal; I'd been told that chemo fatigue may last as long as the time I was on chemo, again. My chemo fatigue was never bad (because of the exercise I'm sure) but it was there, and it's there still, as I had been warned it would be.
I can't tell you if I am tired like when I was on chemo or more, or less -- but it's unusual for me, and I'm not sick. I'm like..... when Mom was here last summer she read and napped a lot. Well I'm doing Mom impersonations a lot these days. (I'm reading a lot, too. I've only got three more Jane Greens left -- I've read 5-6. She's very can't-put-down. The most recent two are the best -- and there's a new one coming. Her only shortcoming is, all her characters speak British, even the ones that are supposed to be American. I can ignore it, though -- though I have gotten tempted to email her with rewrites on a passage or two .......) I'm still biking and swimming and walking and everything. I'm just napping more, too, and cutting down on supermom stuff. Less shopping, less squeezing one more errand into not-quite-enough time, less cooking..... can't pretend I ever did much in the way of cleaning, so that hasn't changed. I suppose it's partly about the books I'm plowing through ..... a lot of the time I'd just rather be reading, and sometimes when you read you get sleepy.
Still there is the morning caffeine, and it's not winter anymore -- so I'm guessing I'm chemo tired. It's not awful, and it's not forever, if I'm right about the cause. SO I'm going to go back on xalatan until my energy comes back such that caffeine is back to an occasional thing. Could be as late as October. I will make sure I have an appointment to see the eye doctor after I go off it -- which is really easy, since I see him every 3 months at least anyway. The doctor did say that caffeine has been known to increase eye pressures in large scale studies. He was careful to say that doesn't prove it increases MINE -- but the winter spikes back that up, I think. (Just so you know -- I'm talking about one cup of green tea in the morning. Caffeine's always affected me more than most.)
Now for the teeth...... I have a hard decision to make. I'm going to see the periodontist on Thursday to talk with him about it, with a couple of x-rays (including a pan) and the letter from the endodontist with his recommendations and concerns. My oncologist had sent me to the endodontist to help me make the decision about taking bisphosphinates, as there is some risk of jaw cell death, especially when there is major dental work done within 10 years of having taken a bisphosphinate. Primarily the problem happens when there are extractions.
The conclusion is, I can take bisphosphinates, but I need to do some dental work first to prepare for it. I need a crown and maaaaaybe a couple of extractions. The extractions are the big decision.... to pull or not to pull.
I have had some bone loss, and my last molars seem to have single roots rather than double roots. All my teeth have shorter roots than they should, because, apparently, my orthodontal work was done too quickly when I was 11-13 years old. The endodontist said he's worried about teeth # 15 and 18. I have no wisdom teeth, so those are my rear molars on the left side, top and bottom. I had thought he was just worried about tooth #15, but he pointed out that #18 won't do me much good without it's opposing tooth anyway. The worry is bone loss; I have had 40% bone loss around tooth #15. (not sure about 18.)
I'm tempted to gamble and keep them. I am so fastidious with my home dental care, if anyone could keep those teeth for the next 10-15 years, it would be me. But.... the stakes are high on this kind of gamble. Apparently jaw cell death is not just more bone loss, but abcesses. (I've never had those.... ) On the other hand there is only a chance that I would lose a tooth in the next 10-15 years, and if I do, having taken bisphosphinates, the risk of jaw cell death is on the order of 10-15%. It's not miniscule..... but it's not a sure thing, either. So -- it's a hard choice.
I think I have some vanity about the idea of losing teeth actually. Weird about what triggers my vanity -- I'm totally cool with losing a breast and showing it off, but talk to me about giving up a couple of molars that no one can see and I have issues.....
I remembered that my pressures tend to be higher at my winter appointments. My doctor showed me that one winter when i worried about it. He said, look, happens every year -- probably it will be better at your next pressure check -- and indeed it was. Well today it occurred to me that the higher pressures might be due to caffeine, not winter. I think I have seasonal tiredness, and use caffeine in the mornings in the winter, and not really any other time -- except now. It's not really a big deal; I'd been told that chemo fatigue may last as long as the time I was on chemo, again. My chemo fatigue was never bad (because of the exercise I'm sure) but it was there, and it's there still, as I had been warned it would be.
I can't tell you if I am tired like when I was on chemo or more, or less -- but it's unusual for me, and I'm not sick. I'm like..... when Mom was here last summer she read and napped a lot. Well I'm doing Mom impersonations a lot these days. (I'm reading a lot, too. I've only got three more Jane Greens left -- I've read 5-6. She's very can't-put-down. The most recent two are the best -- and there's a new one coming. Her only shortcoming is, all her characters speak British, even the ones that are supposed to be American. I can ignore it, though -- though I have gotten tempted to email her with rewrites on a passage or two .......) I'm still biking and swimming and walking and everything. I'm just napping more, too, and cutting down on supermom stuff. Less shopping, less squeezing one more errand into not-quite-enough time, less cooking..... can't pretend I ever did much in the way of cleaning, so that hasn't changed. I suppose it's partly about the books I'm plowing through ..... a lot of the time I'd just rather be reading, and sometimes when you read you get sleepy.
Still there is the morning caffeine, and it's not winter anymore -- so I'm guessing I'm chemo tired. It's not awful, and it's not forever, if I'm right about the cause. SO I'm going to go back on xalatan until my energy comes back such that caffeine is back to an occasional thing. Could be as late as October. I will make sure I have an appointment to see the eye doctor after I go off it -- which is really easy, since I see him every 3 months at least anyway. The doctor did say that caffeine has been known to increase eye pressures in large scale studies. He was careful to say that doesn't prove it increases MINE -- but the winter spikes back that up, I think. (Just so you know -- I'm talking about one cup of green tea in the morning. Caffeine's always affected me more than most.)
------------ 0 ------------ 0 ------------ 0 ------------ 0 ------------
Now for the teeth...... I have a hard decision to make. I'm going to see the periodontist on Thursday to talk with him about it, with a couple of x-rays (including a pan) and the letter from the endodontist with his recommendations and concerns. My oncologist had sent me to the endodontist to help me make the decision about taking bisphosphinates, as there is some risk of jaw cell death, especially when there is major dental work done within 10 years of having taken a bisphosphinate. Primarily the problem happens when there are extractions.
The conclusion is, I can take bisphosphinates, but I need to do some dental work first to prepare for it. I need a crown and maaaaaybe a couple of extractions. The extractions are the big decision.... to pull or not to pull.
I have had some bone loss, and my last molars seem to have single roots rather than double roots. All my teeth have shorter roots than they should, because, apparently, my orthodontal work was done too quickly when I was 11-13 years old. The endodontist said he's worried about teeth # 15 and 18. I have no wisdom teeth, so those are my rear molars on the left side, top and bottom. I had thought he was just worried about tooth #15, but he pointed out that #18 won't do me much good without it's opposing tooth anyway. The worry is bone loss; I have had 40% bone loss around tooth #15. (not sure about 18.)
I'm tempted to gamble and keep them. I am so fastidious with my home dental care, if anyone could keep those teeth for the next 10-15 years, it would be me. But.... the stakes are high on this kind of gamble. Apparently jaw cell death is not just more bone loss, but abcesses. (I've never had those.... ) On the other hand there is only a chance that I would lose a tooth in the next 10-15 years, and if I do, having taken bisphosphinates, the risk of jaw cell death is on the order of 10-15%. It's not miniscule..... but it's not a sure thing, either. So -- it's a hard choice.
I think I have some vanity about the idea of losing teeth actually. Weird about what triggers my vanity -- I'm totally cool with losing a breast and showing it off, but talk to me about giving up a couple of molars that no one can see and I have issues.....
Thursday, April 23, 2009
A Word on Vanity -- or Wearing my Battlescar with Pride
I've been going around with one boob, and not even a bra -- so forget a prosthesis. I don't even have a real one yet -- just the one I crocheted when I couldn't figure out the knit instructions Maretta sent (the link is in the comments for a post I made months ago, probably at the beginning of my treatment.) I had been planning for that to be a temporary thing, but I find myself liking the asymmetrical look more and more.
I am wearing a sports bra again, today for the first time since radiation -- My scar has finally healed enough that a bra doesn't hurt! Still, I have nothing in the bra on the right side -- because I don't have to; sports bras are flat til you put something in them.
And I find I like that look just fine. A sports bra with nothing else. Nice and easy, no extra time needed for getting dressed -- and it looks fine! I don't get all these women who worry about how they look with only one breast. I think it looks fine -- nice, even! And it's not because I'm not vain.
I didn't like the eyebrowless look. I thought I looked like an alien without eyebrows. The first makeup I've ever bought and used almost consistently was eyebrow pencil. (Okay so I wasn't real consistent. I couldn't always be bothered...... but I had a pencil in my backpack in case I ever went anywhere I wanted to have eyebrows on for -- that's pretty serious, for me!)
And then there's my thing about eye color. I could have stayed on the xalatan, a wonderful glaucoma medicine with no adverse effects except that it will probably turn my eyes brown. I went off it. Is that smart? It's not entirely stupid -- my eye pressures are okay. They were a little better on the xalatan, though..... It's just vanity really.
But I am liking the uniboob look more and more. One pretty breast or two pretty breasts -- who cares? (Okay so it's a droopy breast, as Em points out, but that's okay too. I didn't want a teenaged breast again. Been there, done that.) I don' t wear particularly loose fitting clothes, either -- now that the burn is better, anyway! (I did while the burn was oozy, because my shirts stuck to it -- and wearing gauze made it worse.) I have decided that the two boob thing is just one of those things people expect to see, and so everyone with a mastectomy tries to emulate it. It's actually not necessary, and maybe if more women went around sporting one boob, women wouldn't feel bad about looking like this the way most of them seem to.
Besides, who are we protecting, when we hide the evidence of our breast cancer? It seems to me that breast cancer is spreading rather quickly -- and that there is an increasing number of environmental factors involved. What better way to let people know that I've been there and might be able to offer some help or at least shared experience, than to wear my battlescar with pride?
I am wearing a sports bra again, today for the first time since radiation -- My scar has finally healed enough that a bra doesn't hurt! Still, I have nothing in the bra on the right side -- because I don't have to; sports bras are flat til you put something in them.
And I find I like that look just fine. A sports bra with nothing else. Nice and easy, no extra time needed for getting dressed -- and it looks fine! I don't get all these women who worry about how they look with only one breast. I think it looks fine -- nice, even! And it's not because I'm not vain.
I didn't like the eyebrowless look. I thought I looked like an alien without eyebrows. The first makeup I've ever bought and used almost consistently was eyebrow pencil. (Okay so I wasn't real consistent. I couldn't always be bothered...... but I had a pencil in my backpack in case I ever went anywhere I wanted to have eyebrows on for -- that's pretty serious, for me!)
And then there's my thing about eye color. I could have stayed on the xalatan, a wonderful glaucoma medicine with no adverse effects except that it will probably turn my eyes brown. I went off it. Is that smart? It's not entirely stupid -- my eye pressures are okay. They were a little better on the xalatan, though..... It's just vanity really.
But I am liking the uniboob look more and more. One pretty breast or two pretty breasts -- who cares? (Okay so it's a droopy breast, as Em points out, but that's okay too. I didn't want a teenaged breast again. Been there, done that.) I don' t wear particularly loose fitting clothes, either -- now that the burn is better, anyway! (I did while the burn was oozy, because my shirts stuck to it -- and wearing gauze made it worse.) I have decided that the two boob thing is just one of those things people expect to see, and so everyone with a mastectomy tries to emulate it. It's actually not necessary, and maybe if more women went around sporting one boob, women wouldn't feel bad about looking like this the way most of them seem to.
Besides, who are we protecting, when we hide the evidence of our breast cancer? It seems to me that breast cancer is spreading rather quickly -- and that there is an increasing number of environmental factors involved. What better way to let people know that I've been there and might be able to offer some help or at least shared experience, than to wear my battlescar with pride?
Wednesday, April 22, 2009
sick
I just got sick for the first time since my diagnosis! It's funny -- I was soooo careful when I was in treatment that I didn't catch anything. (Okay I did get a couple of yeast infections -- but I don't think they count if we're talking about catching things. Not for me, anyhow -- I could catch one of them in a vacuum I bet.) ANyhow I did finally get sick -- but the timing is such that I don't know exactly where, who, how I got it.
See we were around all these sick people when we were out of town -- but we left a week ago Sunday morning. That's a week and a half now. Last time we saw Sandi's sick family was Friday night, almost two weeks ago now. Mary's family, who we visited with all Saturday afternoon, got sick after, but it was not the same kind of sick I got. They got fevers and aches -- I got a chest cold.
What happened to me was, last Friday I came in from a bike ride and my chest was full. That's it, no other symptoms. I read in the paper that it was a high pollen count day and thought, hmm, maybe that's it? Didn't feel like it, though -- it felt like a cold that had moved down into my chest -- except that I didn't HAVE a cold. So I tried to fend it off (cats claw and airborne) and for a couple of days it seemed not to do much. (That was okay but not great because it was supposed to be receding!) Finally Sunday night I started feeling a little achey.... so I knew it had taken a firmer hold. BY then we had visitors -- with sick kids! (COuldn't have been them, either; I already had it by then.) And don't even tell me we shouldn't have had them over. We hadn't seen them in so long that they were only a she when we last did -- and we weren't married yet ourselves. I hope I didn't get any of them sick.... course they would assume it came from their kids if I did. ANyhow, Alan did all the cooking except for the soup, which cooked for a long time.
I started coughing overnight. Coughing up blobs. Still no other cold symptoms, though. ANyone ever had anything like this? (I think I have once, and I thought it was weird then too.) I started to get tired and take naps..... On Monday I reschedulede my radiation follow up so I could stay home and be sick with EMily, who was also home sick. (slight sore throat, but mostly her tics made her tummy hurt -- and I didn't have the energy to fight her about it.) I didn't keep her much company though -- I rested a lot. On Tuesday I rescheduled my eye appointment -- It was a beautiful day but didn't feel up to biking to CHevy Chase.... or even driving. I made an appointment with the regular doctor instead, and got some antibiotics. ("You haven't been here in a year," he said, as though I'd been doing anything other than medical appointments in that year..... My last appointment with my primary care doctor was when I went in to see about the lump in my armpit...... )
ANyway the doctor wanted to give me some strong new antibiotic. I think he was worried that I might have something bigger and worse than the usual crud because of my story about having biked to all my chemos, and the fact that he could see I wasn't in that kind of shape now. However..... he said that that drug (the fancy new one he wanted me to take at first) can cause bad tendonitis if you exercise while on it. Ruptured tendons sometimes. Could I lie low for a week? he asked.
Hmm, let's think. For about one nanosecond. No, I don't think I could do that. Actually I don't think I stopped to think at all but reacted instantly with an "Are you kidding?" I mean I JUST had to lie low while we were out of town, and then I was jsut getting back into the swing of things when I got sick, so I was lying low because of that .... so, no, I was thinking more like the antibiotic fixes me and I get back on the bike in a day or two.
So he gave me azithromycin, which was what I had expected, and told me to call him if it didn't make me better in two days. I pointed out that perhaps I just do better on chemo than on a bacterial infection...... since I wasn't in fact sicker than I have been at other times when I've needed antibiotics for chest colds. It might just be about the chemo..... which was probably easier for me because I was active throughout. (In fact I am sure people will start to see chemo patients encouraged to remain active, to be active, throughout treatment. Just you watch.) They don't know about this yet -- not really. But they will. The cool thing would be if it were discovered that exercise actually helps the long term prognosis........
ANyway so I started the antibiotic yesterday early afternoon, and by evening was feeling a bit like my usual whirlwind self. THought it might be the power of suggestion or maybe the sudafed I'd taken at the same time as the antibiotic, but no -- today I woke feeling MUCH better, and went on a bike ride. It was only 28 miles (it was raining, people had to get back......) but I took Pinky for a hill walk after, for almost an hour. Now I'm tempted to mow the lawn -- which needs it all of a sudden!
Maybe tomorrow I will call the doctor and tell him the stuff worked wonders. It was just what I went there looking for, the antibiotic fixes me and I get back on the bike in a day or two. Antibiotics are just really something, aren't they? I wish chemo worked like that. POOF, gone.
See we were around all these sick people when we were out of town -- but we left a week ago Sunday morning. That's a week and a half now. Last time we saw Sandi's sick family was Friday night, almost two weeks ago now. Mary's family, who we visited with all Saturday afternoon, got sick after, but it was not the same kind of sick I got. They got fevers and aches -- I got a chest cold.
What happened to me was, last Friday I came in from a bike ride and my chest was full. That's it, no other symptoms. I read in the paper that it was a high pollen count day and thought, hmm, maybe that's it? Didn't feel like it, though -- it felt like a cold that had moved down into my chest -- except that I didn't HAVE a cold. So I tried to fend it off (cats claw and airborne) and for a couple of days it seemed not to do much. (That was okay but not great because it was supposed to be receding!) Finally Sunday night I started feeling a little achey.... so I knew it had taken a firmer hold. BY then we had visitors -- with sick kids! (COuldn't have been them, either; I already had it by then.) And don't even tell me we shouldn't have had them over. We hadn't seen them in so long that they were only a she when we last did -- and we weren't married yet ourselves. I hope I didn't get any of them sick.... course they would assume it came from their kids if I did. ANyhow, Alan did all the cooking except for the soup, which cooked for a long time.
I started coughing overnight. Coughing up blobs. Still no other cold symptoms, though. ANyone ever had anything like this? (I think I have once, and I thought it was weird then too.) I started to get tired and take naps..... On Monday I reschedulede my radiation follow up so I could stay home and be sick with EMily, who was also home sick. (slight sore throat, but mostly her tics made her tummy hurt -- and I didn't have the energy to fight her about it.) I didn't keep her much company though -- I rested a lot. On Tuesday I rescheduled my eye appointment -- It was a beautiful day but didn't feel up to biking to CHevy Chase.... or even driving. I made an appointment with the regular doctor instead, and got some antibiotics. ("You haven't been here in a year," he said, as though I'd been doing anything other than medical appointments in that year..... My last appointment with my primary care doctor was when I went in to see about the lump in my armpit...... )
ANyway the doctor wanted to give me some strong new antibiotic. I think he was worried that I might have something bigger and worse than the usual crud because of my story about having biked to all my chemos, and the fact that he could see I wasn't in that kind of shape now. However..... he said that that drug (the fancy new one he wanted me to take at first) can cause bad tendonitis if you exercise while on it. Ruptured tendons sometimes. Could I lie low for a week? he asked.
Hmm, let's think. For about one nanosecond. No, I don't think I could do that. Actually I don't think I stopped to think at all but reacted instantly with an "Are you kidding?" I mean I JUST had to lie low while we were out of town, and then I was jsut getting back into the swing of things when I got sick, so I was lying low because of that .... so, no, I was thinking more like the antibiotic fixes me and I get back on the bike in a day or two.
So he gave me azithromycin, which was what I had expected, and told me to call him if it didn't make me better in two days. I pointed out that perhaps I just do better on chemo than on a bacterial infection...... since I wasn't in fact sicker than I have been at other times when I've needed antibiotics for chest colds. It might just be about the chemo..... which was probably easier for me because I was active throughout. (In fact I am sure people will start to see chemo patients encouraged to remain active, to be active, throughout treatment. Just you watch.) They don't know about this yet -- not really. But they will. The cool thing would be if it were discovered that exercise actually helps the long term prognosis........
ANyway so I started the antibiotic yesterday early afternoon, and by evening was feeling a bit like my usual whirlwind self. THought it might be the power of suggestion or maybe the sudafed I'd taken at the same time as the antibiotic, but no -- today I woke feeling MUCH better, and went on a bike ride. It was only 28 miles (it was raining, people had to get back......) but I took Pinky for a hill walk after, for almost an hour. Now I'm tempted to mow the lawn -- which needs it all of a sudden!
Maybe tomorrow I will call the doctor and tell him the stuff worked wonders. It was just what I went there looking for, the antibiotic fixes me and I get back on the bike in a day or two. Antibiotics are just really something, aren't they? I wish chemo worked like that. POOF, gone.
Friday, April 17, 2009
Boston Visit
Em and I went to Boston last week, for her spring break. It was the first time we'd taken separate vacations. Matthew went to CHicago -- he's done that before, a couple of years ago when we went to Boston. However this time Alan didn't come with us. ALan has a new job, with only 2 weeks vacation the first year. He didn't want to spend one of those two going to Boston in the spring..... and to be fair, it actually WAS spring here, whereas in Boston.... it was still mud season. But we didn't go there for the weather.
We went to see friends and my mom, and it was great! The new thing for me was my promise to myself not to do too much. Since we lived there for so many years there are a lot of people we really want to see, but we can't always make it work -- and I used to make myself crazy trying. Well no more making myself crazy, no more trying to ve superwoman.
There were some important people it felt a bit strange not to see -- but I have seen 2 of them not too long ago, here... and we did get to see a lot of important friends, including Mary and Mustafa, who I really wanted to see this time because they are probably moving out of the country this summer. One new thing for me was, this was my first visit to the area since we left that I haven't gone to my HOUSE. This was only possible because we now have a property manager, who seems to be a real human being. (whew!) I had meant to stop by anyhow, though -- and meet at least one tenant, and the prop. manager himself. I had to cut my plans down, though......
I brought our bikes, and rode mine 4 times, I think -- EM only rode once. I had one good 30 mile ride, one ride to the clinic and back to Belmont in the rain -- which wasn't the workout it should have been, because when it rains I slow down for safety, especially when biking in traffic.
The other thing is, Em's tics have been getting worse lately...... she has this abdominal tic which makes her nauseous, so sometimes she doesn't eat much. That's not really a good idea for a growing almost 12 yr old -- so we got in to see the doctor this past Tuesday. He prescribed a couple of medications (klonipin, short term, and topamax for the long run.) I started her on them right away, but never gave a 2nd dose of either drug.
She got dizzy in school and melted down at home......... I was all set to cut the klonipin and keep her on teh topamax (the doc had said that klonipin would work immediately, but topamax would take awhile.) HOwever -- ALan found some info on topamax and porphyria, a family illness that she hadn't yet been tested for. I was hoping the doc would have her get tested for it -- but intead he just prescribed a different med. (Resperidol? Rispedol? It seems to have several spellings.....) We are looking into it before we give her any......
And now -- I'm wiped out, going to bed! (33 miles biked today. Maybe that's why?)
We went to see friends and my mom, and it was great! The new thing for me was my promise to myself not to do too much. Since we lived there for so many years there are a lot of people we really want to see, but we can't always make it work -- and I used to make myself crazy trying. Well no more making myself crazy, no more trying to ve superwoman.
There were some important people it felt a bit strange not to see -- but I have seen 2 of them not too long ago, here... and we did get to see a lot of important friends, including Mary and Mustafa, who I really wanted to see this time because they are probably moving out of the country this summer. One new thing for me was, this was my first visit to the area since we left that I haven't gone to my HOUSE. This was only possible because we now have a property manager, who seems to be a real human being. (whew!) I had meant to stop by anyhow, though -- and meet at least one tenant, and the prop. manager himself. I had to cut my plans down, though......
I brought our bikes, and rode mine 4 times, I think -- EM only rode once. I had one good 30 mile ride, one ride to the clinic and back to Belmont in the rain -- which wasn't the workout it should have been, because when it rains I slow down for safety, especially when biking in traffic.
The other thing is, Em's tics have been getting worse lately...... she has this abdominal tic which makes her nauseous, so sometimes she doesn't eat much. That's not really a good idea for a growing almost 12 yr old -- so we got in to see the doctor this past Tuesday. He prescribed a couple of medications (klonipin, short term, and topamax for the long run.) I started her on them right away, but never gave a 2nd dose of either drug.
She got dizzy in school and melted down at home......... I was all set to cut the klonipin and keep her on teh topamax (the doc had said that klonipin would work immediately, but topamax would take awhile.) HOwever -- ALan found some info on topamax and porphyria, a family illness that she hadn't yet been tested for. I was hoping the doc would have her get tested for it -- but intead he just prescribed a different med. (Resperidol? Rispedol? It seems to have several spellings.....) We are looking into it before we give her any......
And now -- I'm wiped out, going to bed! (33 miles biked today. Maybe that's why?)
Thursday, April 16, 2009
The Endodontist Visit
Well the bad news was what it cost, so the health related concerns are okay, I was pleased to say. (I had to pay up front and submit to insurance. Just one more thing that would, I'm sure, have been so much better covered jsut a few months ago when Alan had us on BCBS PPO. The Federal Employee plan covers a lot less. Go figure!)
Anyway, about the teeth -- the doc said I can take bisphosphinates, but first he recommends I have one tooth crowned, because the filling is large and might break, and he has a concern about tooth 15. This is a tooth way in back that my Boston dentist worked really hard on before I left...... a pocket had opened up behind it and I couldn't keep it clean, so it got a cavity -- which of course kept falling out, so in the end she drilled right up through the middle of the tooth in order to anchor the filling. That's all fine still -- and I'm not sure how relevant it is to the reason why the doctor is worried about it, but it does make me reluctant to consider getting the tooth pulled anytime soon.
See, the problem with bisphosphinates and jaw bone loss happens most often when teeth are pulled. One thing I learned today is that the bone changes caused by bisphosphinates last for 10-12 years after the person is done taking them. I forgot to ask my oncologist how long i'd be taking them for, and I suppose it probably depends on whether my dexa scan shows improvement in the bone density in my spine -- but I am going to guess 3 years, which is the duration of the study I missed. This means that if I am to keep tooth #15, I need to know that it is likely Ill be able to to keep it for a good 15-18 years. It feels solid and rooted to ME -- but I can see on the pan x-ray that was taken today that there is a good bit of bone loss underneath it (40%, the endodontist said) and the root is single, not double, as the others are.
SO I brought home a copy of the pan x-ray, and copies are going to go to my periodontist and dentist -- and my endodontist is going to talk to my periodontist. I'm happy that my teeth aren't in worse shape than this, at any rate. I clean my teeth in a careful painstaking way every night -- with floss, a hand scale, a proxabrush, and a flouride rinse. It's very validating to hear that maybe all my work is doing something. Now if only we had a crystal ball to see if that work will be enough to keep that tooth for the next 15-20 years......
Anyway, about the teeth -- the doc said I can take bisphosphinates, but first he recommends I have one tooth crowned, because the filling is large and might break, and he has a concern about tooth 15. This is a tooth way in back that my Boston dentist worked really hard on before I left...... a pocket had opened up behind it and I couldn't keep it clean, so it got a cavity -- which of course kept falling out, so in the end she drilled right up through the middle of the tooth in order to anchor the filling. That's all fine still -- and I'm not sure how relevant it is to the reason why the doctor is worried about it, but it does make me reluctant to consider getting the tooth pulled anytime soon.
See, the problem with bisphosphinates and jaw bone loss happens most often when teeth are pulled. One thing I learned today is that the bone changes caused by bisphosphinates last for 10-12 years after the person is done taking them. I forgot to ask my oncologist how long i'd be taking them for, and I suppose it probably depends on whether my dexa scan shows improvement in the bone density in my spine -- but I am going to guess 3 years, which is the duration of the study I missed. This means that if I am to keep tooth #15, I need to know that it is likely Ill be able to to keep it for a good 15-18 years. It feels solid and rooted to ME -- but I can see on the pan x-ray that was taken today that there is a good bit of bone loss underneath it (40%, the endodontist said) and the root is single, not double, as the others are.
SO I brought home a copy of the pan x-ray, and copies are going to go to my periodontist and dentist -- and my endodontist is going to talk to my periodontist. I'm happy that my teeth aren't in worse shape than this, at any rate. I clean my teeth in a careful painstaking way every night -- with floss, a hand scale, a proxabrush, and a flouride rinse. It's very validating to hear that maybe all my work is doing something. Now if only we had a crystal ball to see if that work will be enough to keep that tooth for the next 15-20 years......
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