worries about zometa and teeth....

I know it's hard to see me in that picture on the ergometers (rowing machines) in the room with everyone -- though I am in front. I made a .tiff crop, and I can't seem to get the blog to take it (OR facebook, OR twitter. What's it FOR, I ask you??) I tried pasting it here, too -- no go. Oh well, maybe one of you guys will help me out here. (I'm not asking my kids -- don't even suggest it.....)

My molar sockets still throb -- but it's been long enough now (a week and a half) that bleeding isn't a real concern, so I can take advil and naproxen. No contest now; this is way longer than the post mastectomy pain. Go figure!

I had those molars out in preparation for taking zometa -- and I just heard a horror story about it, which is making me worried. Course it was 3rd hand, so no way to find out if there is a clear way to avoid the trouble happening (like maybe the woman who'd taken it had a tooth pulled? I was able to get it down to 2nd hand, but my friend hadn't asked all the questions I had, so no way to know that part of the story. UNless my friend bumps into this woman again and asks....

ANyhow, the story I got is that this woman took zometa and lost half her teeth -- and the other half are loose. It does have a risk of osteonecrosis of the jaw. Both my local oncologists think this is overblown, hardly any correlation between the incidence of osteonecrosis and having taken zometa. I tend to trust what an individual knows about her (or his) body over statistics. It's not easy to prove anything from anecdotal evidence until it's way obvious.....

What I did hear directly from my own personal friend about HER experience with zometa surprised me, though it was not tooth related. I was not expecting side effects, but she says she had to sleep off flulike symptoms for 24 hrs. And she took zometa a lot more often than my doctor recommended I take it, so I suspect she took a smaller dose. However -- this I can do; it's short term temporary. I just won't schedule it before a biking day, if I can manage not to. :-D

I next see my doc in a couple of weeks; I had been planning to set up the zometa thing then. I'm going to see how much I can find out between now and then...... any help, anecdotes, etc. will appreciated!!

extractions

I had my two left rear molars out last Wednesday (before I wrote that last post I think.) I'm not delighted about giving up the teeth -- and also, I did think the recovery would be quicker. It hasn't been awful, but it's lingering. The sockets throb, even now, 4 days after the extractions (and an hour after my last tylenol!) I feel like the mastectomy recovery was quicker...... maybe because they stitched the wound up? I do wish the doc had stitched the sockets up -- I keep getting food in them, and that can't help with the healing.

"Nice Haircut!"

I got a compliment on my "haircut" yesterday! I went swimming at Wakefield, and one of the lifeguards really hadn't seen me much in the last year..... maybe I'd always been wearing a swim cap or a hat. It's not my usual pool, as I said before -- but this lifeguard used to work at Yorktown, so she remembered me. ANyhow -- I got out of the water (no cap) and she said "Hey, I like your haircut!" and I looked at her, and her face was all lit up like she meant it. I said "You really do, don't you?" I decided not to spoil the moment by telling her that it wasn't exactly a haircut by choice...... so I said thank you, and went away feeling great.

It made my day, you know? I realized after that that I have seen this haircut on black women before. I hadn't thought of it til I got the compliment -- maybe because the lifeguard is black. (Her hair's long & braided, though.) Here, I'll see if I can add some pictures from this past memorial day weekend when I was learning to row. (WeCanRowDC novice training weekend)






Sorry -- that's the best I can do for these pictures at the moment.

I had my two molars extracted this afternoon. It was simpler than I thought. I hope the spots heal well and no complications. I am not real happy about having the teeth out before they were dropping out of my mouth...... I keep thinking I'll get over it. It's interesting how that bothers me (not a LOT but sort of relentlessly; every time I think about it, I'm still not happy about it) while I was always fine about losing the breast. Maybe I owe that all to the doctor who showed me the MRI right away.

He showed it to me before telling me I needed a mastectomy. I saw it and wanted that bad boy OFF! and have never looked back. Now I hear about all these women with identity issues about mastectomies. Maybe more of them would be happy to be lopsided too if only they'd gotten to see the picture of the cancer first, and choose for themselves? There was not really an equivalent thing they could have done about the teeth -- I guess they could have shown me pictures of abscesses....... but it would not have had the same impact as the MRI picture of MY breast, all lit up like the 4th of July. The abscesses were always a possible scenario, not a sure thing.

Anyway. I went on a nice bike ride this morning before the extractions -- so i wouldn't lose a workout day. Might not do much tomorrow, but I'm told I should be fine by Friday. And even tomorrow, maybe........

Chlorine

Just in case you guys thought i was exaggerating about the chlorine (I wondered, myself) Mom and I went swimming at Wakefield pool the next day (it was Yorktown that was overchlorinated) and I was fine, no breaks needed other than goggle fix breaks (think I need new ones) and maybe, you know, a break every third or quarter mile. (That's still recuperation, or lung stuff, I guess -- it's not as I was but it's reasonable, not like every lap or two like Thursday!) Also I developed a brown spot on my chin which crusted over the next morning, a chlorine burn. It doesn't hurt but it looks ugly. There were some other things too, a nick here, a sore spot there -- enough to corroborate it.

I wonder if I can get the pool people to warn me when they put in that kind of chlorine..... I am signed up for updates; they could just add chlorine updates to what they post. I'd love to go somewhere else when it's like that, next time.

Lung Scars

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°.....

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.

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.)

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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.....