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.....

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?

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.

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?)

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......

bisphosphonates -- ?

I saw my doctor yesterday and the big question on the table was about bisphosphonates. I had wanted to be in a clinical trial about them, but missed it because of the extra chemo I took. (I had to start them within a certain timeframe after having stopped chemo and had surgery -- but the extra chemo didn't count, and since I had to wait til it was done, it was past the timeframe.)
HOwever, I had a bone scan which found "osteopenia" in my spine, which is bone loss. It's not wonderful, but it's not osteoporosis, and should qualify me for a bisphosphonate through my insurance. This is a good thing, because bisphosphonates seem to play a role in prevening bone metastases in breast cancer. However, there is a catch.

There is some small risk of jaw cell death associated with bisphosphonates. I wasn't worried at first, and my periodontist said I should go ahead. BUt then Alan started reading more about it, and I realized that I already have bone loss in my jaw; that is somehow part of the periodonal problem I have. (This is the one problem I have that is actually predictable because of family history -- as opposed to the glaucoma and the breast cancer, which were surprises.) My concern is that perhaps having a preexisting condition which predispose me to bone loss in my jaw -- or perhaps the fact that it's already happening to some extent -- means that I fit the profile of the person more likely to have this reaction to the use of bisphosphonates.

SO my oncologist recommended I see an endodontist for a workup. The last thing I want is more doctor's appointments, but I have to agree that if this guy has tests he can do which will tell us more about whether it makes sense for me to take bisphosphonates or not, before I take them, that would be smart -- even if we have to pay out of pocket for it. (Won't know that til after we pay and submit the request to the insurance company, which is how it goes for the endodontist.)

I've never seen an endodontist, BTW. All my problems have been perio, and dental. I did find a 2nd cavity..... The periodontist found one at my first cleaning (a week after I finished chemo) and I don't know how he missed this one, but I found it, so I'm getting that filled soon as I get back from MA, where I am off to tomorrow, with EMily. THen I see the endodontist a couple of days after that. I left room for bike rides on Wed and Fri. No time for jobs though -- we're back to that again! BUt maybe just for a week......

Anyway -- my oncologist said that it's possible the endodontist will say that under no circumstances should I use bisphosphonates at all. In that case, he said, he would recommend denosumab. He spelled it out and told me to have ALan google it. (But why stop at Alan? Anyone else wants to check it out for me, feel free -- I looked already, but the more eyes and brains, the better, especially when some of them are mine.) Apparently it has no jaw cell death side effect and MAY be the next great drug for preventing bone metastases..... but it's new, and they don't know, and it may have other issues, and in any case insurance probably won't pay unless bisphosphonates are counterindicated.....

I figured it out!

My burn is better and better. It's completely obvious that the problem was caused by the gauze. The question that was bothering me was, why did the doctor not realize that the gauze was going to cause the problem? He asked me to lie low this weekend, stop using gauze AND cut my activity level. It must be something to do with some activity I'm doing, he said. Clearly he had no idea, hadn't seen it happen before, so he figured, must be my level of activity, something none of his other patients do.

But as I biked home I knew it wasn't biking -- my arm is held well away from my side where the burn area is when I bike, and is held STILL, with my hands on the handlebars. Biking has got to be the kindest thing on the burn area just the way swimming is the hardest on it. (That's because chlorine is hard on the skin. It's getting better though -- I will swim again, maybe within the week. Still have those tegaderm bandages, and I know to take them off now, when I'm done swimming.)

Anyway, this afternoon I took the dog for a long walk -- hills for an hour. Afterwards I came home, came in, took off my sweaty shirt, patted the burn area dry, and put on more gel and a big shirt with room for the stuff to dry while I ate dinner. And I realized -- when I had the gauze on the sweat just collected. It wasn't enough that I could change the gauze without hurting my burn..... unless that was going to be my bath time. I did take a bath after the bike rides last Wednesday and Friday, and changed the gauze -- but I only did that (took a bath & changed the gauze) once in 24 hrs. I didn't take baths after every time I walked the dog, though.... even if I walked her for an hour, I didn't always get to take a bath til evening -- and I couldn't get the gauze off any other way......

It seems unlikely, especially given the high number of women in breast cancer treatment who start getting hot flashes on chemo.... but somehow I think my doctor isn't used to patients who do enough to sweat. (Weird, huh? What kinda life...... like a life without sex.....but I guess it takes all kinds!)