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!)

nudity & cherry blossoms

so the doc said I have to go around topless this weekend, let the thing air dry. I have a T-shirt on now, which is wonderful. When the gel was drying I really had to let it be naked -- and I found that I don't LIKE being naked when I don't have my skin on! I am fine with nudity generally, but going around with a bare naked gaping wound....no. I especially didn't like cooking dinner like that, with the frying pan spatter.

YOu'd think I could wait til it dries to cook, but the burn gel really takes a good hour or two to dry. Feels like your whole life when it's happening. I have never been patient, and by now I have given up on the idea of gaining patience when I grow up..... though I really did used to think it was gonna happen! Comes from growing up with a non-genetic parent I think. You think you will somehow inherit some of their traits when you grow up, but, um, doens't work out quite that way.....

Anyway I thought you guys might want to know my wound is nothing so bad as it seemed yesterday. In fact already this morning it looked better..... I had to change the dressing in the AM before the bike ride, because there was blood soaked through all the gauze and my T-shirt, and it occurred to me that if I was actively bleeding a bike ride might not be the best idea. It was soaked enough that the dressing came off easily -- and then lo and behold, it turned out that the stuff soaking the gauze was mostly not blood at all (I'd say 5% blood at the most.) So I patched myself up and off I went!

The other interesting observation was ALan's. He pointed out that the problem with the wound started after I started putting gel and gauze on, as per the doctor's orders. I suppose it's possible it was going to get bad anyway last week, but I think the gauze and gel made it worse in any case ..... I DID tell them that the gel made the gauze stick to me, and that it peeled my skin off when I changed the dressing.... but whatever; it's over now.

About the CHERRY BLOSSOMS..... I don't know if you guys all know about them, but the DC cherry blossoms are famous. BTW they are famous not because they're beautiful, but because the japanese gave them to us after WW2. They ARE beautiful, but if you saw spring here you would question the fuss about the cherry blossoms too. EVERYthing is beautiful! I've never lived anywhere that wakes up and comes into bloom the way it does here. The cherry blossoms are great, but about 50% of the other stuff that comes into bloom sometime in the spring is even better. Personally, if I had to choose a tree to have a festival about here it would be redbuds. They are this small tree that blooms later (another week or two maybe?) They start out with a purple outline that feels like it's in your head..... and then it gets big enough that it's clearly real. Later they are full blossoms -- and in the summer the leaves are heart shaped. We planted one out in front of the house last summer (a present from the Birchells when they moved away) and it looks like it wintered over okay -- so I expect a purple outline any day now..... The magnolias are beautiful, too.

Anyway the cherry blossom festival starts tomorrow -- and we went on a blossom ride today. I thought the trees would be in bloom because I'd seen one in the next neighborhod over, on a dog walk. However I found out an interesting thing. Weeping cherries are in bloom now. They are LOVELY. Much lovelier than the regular kind, I personally think -- but I just love anything that grows in that droopy way. (Every seen a weeping pine? Omigod!) However, the NON weeping cherries are not in bloom yet. They were bare trees with buds, all of them. Luckily we passed a few lovely weeping cherries as well -- someone took pictures.

WARNING don't eat while reading GROSS DESCRIPTION in this post

The bleeding was worse today, and the bloody area larger. The bathtub looked sobering when I got out.... You know those TV shows where people commit suicide by cutting themselves in the bathtub? Yeah, extremely gross. Well the tub made me think of those scenarios when I stood up in it today -- though to be fair it was more brown than red. (I was getting ready to worry about blood loss, and then I realized I haven't had a period since last June..... and it probably wasn't even one period's worth.) Anyway, I called the doctor after the bath..... he wants me to come in, of course. The thing is, no way will he be able to see it without putting me into excruciating pain. Except maaaybe....

I dried the area before putting gauze on. When it was dry enough I put a layer of antibiotic ointment followed by a layer of burn gel -- and then let it dry some more. I was probably walking around with half a shirt on for a good 45 mins. THEN I put on an OIL soluble burn ointment, before putting the gauze on. SO one can hope that the gauze will peel off enough for a good look inside without taking the scabbing off with it......

Also there is a cherry blossom bike ride tomorrow morning I'm going to go to first. Last year I missed the cherry blossom ride to have the suspicious lymph node removed -- which led to my diagnosis. I'll be damned if I'm going to miss a SECOND cherry blossom ride a YEAR LATER because of the same disease! Luckily the doctor thought that was completely reasonable, and said I can come at 1pm with my bike. Whew!

radiation burn

I guess the doc wasn't exaggerating when he said it would get worse for 7-10 days. At this point I can only get the gauze off in the bath. (Now THERE's a way to make sure I take one daily!) Today when the gauze came off (in the bath, on its own, I didn't pull...) it was quite bloody under my armpit. The spot on my chest is much better though -- and the middle is mostly just peeling. I don't like the smell -- like a hospital. Doesn't look or smell infected, though -- I think this is what they expected. It's pretty gross, though. It ought to be better enough for a photo op by 4/2, though -- a year since my diagnosis. I'll try to remember to get one taken then.

I went on a great bike ride today -- 33 miles -- and came home with 2.5 loaves of bread. I can feel it in my legs and I'm nice and tired. Might have to wait til the AM to have the energy to write the ride report, though. :-D (ENergy is funny that way....)

Speaking of energy, I got this fabulous waterproof Iron Woman watch in the mail. It screamed Natasha at me (my swimming mentor!) and sure enough I found her name on it. However, when I thanked her she said it was a joint present from her, Lori, Sandi, Jim, David Gillman and David Osofsky. WOW! I don't know what I ever did to deserve such a cool present -- but I will try to do it justice. Thanks guys. I'm thinking Natasha thought of it maybe when I posted something to FB about having swum a mile in 35-38 minutes.....

I'm liking having my mornings back though. Yesterday am I got a nap. Today I went for a bike ride. Tomorrow maybe another nap? Actually I had a nap this afternoon too..... it was unplanned; Emily came home with a sewing project. I lay on one sofa while she did her homework on the other. I didn't even see her move to the TV room with her sewing.... next thing I knew ALan was calling to say he was on his way home. I won't dare swim with the burn as bad as it is, and in just the place where I would need to move the most (so a tegaderm bandage might not feel good.) However, on non biking days I've been walking, say an hour and a half, with the dog. SHE thinks it's great!

ALL DONE

Good thing, too. I'm fried! Today's the first day it has hurt sometimes when it's not being touched. I noticed on the bike ride and kept trying to adjust my clothing and it didn't really work.... because the problem is the skin itself. I think probably I am burned worse for having swum. (I did notice that the burn seemed worse the day after swimming, the last 2-3 times I swam. Now I'm planning to stay out of the pool for probably a couple of weeks til the skin's healed. However -- it was worth it to swim, and I probably got the weeks out of the pool down from the recommended 4 to 2.

I led the bike ride today. I think I made it too long, for me (40m). I figured out during the ride that perhaps I do have some fatigue from radiation, but it's like the chemo fatigue -- completely invisible til I try to ride with the Babes. (I still have more energy than most people.) I have been riding all winter, & 40 miles would usually be fine under those circumstances..... but with the treatment, I think perhaps not. I think I will shoot for 25-30 m rides for the next couple. Course I might feel better if I get to nap sometimes. See I really couldn't take daytime naps during the week while I was having radiation. I could really only squeeze one thing in between radiation and the end of the school day..... if it was a nap, that would be all I'd get to do......

And on that note -- I need a nap now! I'd just go to bed, but Matthew is out and will call for a ride in about an hour I think.