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.

Got a lot done today -- and a reward, thanks to Jennifer

I had this very productive morning, and the icing on the cake of it was the swim I went for afterwards, which was only possible because of this great idea Jennifer gave me -- tegaderm! I got this nice 6"x6" water resistant tegaderm bandage from CVS ($4 each, but worth it when you're desperate....) and put it on my chest burn with some of the radiation onc's miracle burn gel, put some vaseline* on the burn under my armpit (which is dark and hurts to lie on but is scaly, not raw,) got into the water and took the shoulder strap off......and I was off! Plus, I was fast, because I was late! (*The vaseline was Barry's idea. What would I do without you guys????)

But lemme back up, because I'm kinda proud of the other stuff I managed to fit into this morning...... I mean, I earned that swim. Okay, so first I went to radiation, as always. I went by car today, though, because I had a job scheduled for afterwards, my first since July. Basically I had emailed my agency and said, I'm fine but I'm so booked with this treatment stuff.... if you guys can find me a job I can fit into my schedule I'd love one. Well it turns out someone had requested me..... at 9:50am in Annandale, which is on the other side of home from Georgetown..... Google said it was a 13 min drive, but I figured given that part of that was in DC, which is prone to traffic jams....

Anyway I offered Matthew a ride to school, since his school is basically on the way to Georgetown. We left at a little after 8, I dropped him at 8:15, got to G-town at 8:30, got to radiation at 8:37 (I park on the street, a few blocks away, because I'm not doing their crowded parking lot and paying for it too) and then I hit a roadblock..... My appointments are at 8:50, but sometimes I can get seen earlier if I get there earlier.... sometimes. Not today. Okay. But when it got to be 9 and I hadn't been called...... and then they called someone else instead... (She has the 8:40 slot, but we all had to wait for someone who they were taking a long time on today. Luckily the 8:40 woman offered to trade with me so I could make it to work.... whew!) SO basically Georgetown used up all my buffer time (thank goodness there was no traffic) and I only just made it to the appointment on time. (The patient arrived a couple of minutes after me -- this was a medical appointment I was interpreting for -- so I got away with it. Timeliness is a virtue in my present line of work, and one of my biggest challenges.)

The job was great, the patient made sure to make her next two follow-ups for when I can come, and I was on the road at 11:05.

OOPS! It was supposed to be a 45 min appointment, done at 10:35, and I had a dental appointment at 11:00 for myself. Called the dentist's at a red light and they said they would still see me 20 mins late. Then I drove like a bat out of hell to make it there only 20 mins late. COurse they made me wait then -- probably saw the next patient first. I had just decided to start eating my lunch when they called me..... they had to give me a toothbrush before they could see me......

I wasn't planning to go swimming. I had brought my pool bag and the tegaderm just in case.... and they had given me a new tube of miracle gel too..... I guess I hadn't completely given up on the idea. I had been thinking I could work out at home on the elliptical, but then the dog would give me the look -- and indeed she'd only been out to pee once at 6:20am (I know, I know) so she'd be in her rights. SO I could have taken her for a good hill walk. That was the amended plan. But you know, i did that yesterday (okay, that was only half of a good hill walk, but the scenery is the same, or close.) I like the stretching and toning from swimming, especially since the surgery. It pulls out the biking kinks, too. Keeps the muscles happy.....

So I was paying the dental secretary at 12:30, thinking what I was going to do. The pool swim only goes until 1:30, and I do a mile in 45 mins... and I still had to pay, get to my car, drive to the pool, change clothes, put on the tegaderm bandage, which I had never used before..... and OH YEAH get a quick bite to eat in there somewhere or I'd run out of blood sugar while swimming, which is NOT PLEASANT. (Can't stop for a snack when you're in the pool..... even harder than on the bike.) Maybe I chose swimming because fitting it into the time I had was a challenge.

So I did. Better, I did the WHOLE MILE. I did it in, I don't know, 35-38 minutes**, because I had to get the time to do all that stuff from SOMEwhere. It's a success, to be able to swim my mile in less time when I have to. (I have always been able to except some of the time when I was on chemo -- I think mostly at the end there. And I've hardly ever been able to swim a mile in under 45 mins under any circumstances other than being late.... sometimes when I'm really relaxed I take 50! Like when the pool is overheated -- I keep forgetting I'm not in the bath.) **This time I'm not sure how long it really took because I had a lot of leaky goggle trouble & kept having to stop and fix them......

The tegaderm worked so great I dried it off and left it on, and when I got home I peeled up a corner and put some more gel in, rather than using a clumsy gauze pad. We will see if the doc thinks it's doing all right when I see him on Thursday. He did look at it today and said it was improved, which I thought, too. I don't think the swimming puts me at a major risk for infection, especially given all my precautions, but I do think being in the chlorinated water for 45 mins is hard on the burned skin. Right now it feels better under the tegadermed spot than under the arm -- but all of it is doing all right. I think that stuff works really well.

burned

Let me describe what the radiation burn looks like, now that it's edges are so sharp and clear. I suppose a picture would be quicker. (It's actually probably a good idea to take one. Maybe Em will help me with that in a bit....) I should warn you guys, though, in case I do get one taken and posted -- people find how it looks disturbing. I think it looks fine, just burned -- which it's supposed to, so what's the big deal? Alan and Em don't like looking at it, though, Matthew won't even try, and I was surprised that the last time I saw the radiation oncologist, it bothered him, too. It took me awhile to figure it out...... this was last Tuesday. He asked to see it, as he does every week, I showed it to him, and he said "Yeah, that's what it's supposed to look like." Then after another moment he winced and said "Okay, that's enough, cover it up." He'd never done that before..... Imagine being a radiation oncologist and being bothered by how your patients look for the last two weeks of treatment when they are really burned...... and you have to keep doing it.

Anyway, here's a description of what I look like now. It looks like a 2D bowl, rounded at the bottom of my right-side ribs, going up beyond my right armpit and onto my back a bit, and on the left coming up a little left of the center of my chest and straight across on top. It's very dark on the sides and bottom, reasonably dark on top, and oddly light in the middle. WHich brings us to next week.

They have done all they are going to do on the outside of this "bowl," is my understanding. (Whooppee! I mean I am cooked. If this were a sunburn I woulda got out of the sun a week ago, at the latest -- and I can be pretty oblivious about that kinda thing.) So next week, my last week of radiation, my understanding is that they are going to radiate just the the scar, which is a diagonal line going up the middle of the "bowl." It goes from my right armpit down to the bottom/middle of my rib cage. It's a fine scar -- I'm happy with how it looks (well, when it's not burned, but this is short-term-temporary.)

It's a bit raw near the middle of my chest (left side of the burn) since I went swimming yesterday. The right side is maybe darker (in the armpit) but it's leathery and solid. I had a little trouble sleeping last night -- I am a belly sleeper...... which is a bit tricky at the moment! Today I bought a couple of 6x6 tegaderm bandages, thinking to try one next time I go swimming...... which might be Tuesday, or I might wait on it, depends on how the burn goes (and timing, as usual.)

ALso I have a yeast infection. This is only the 2nd since I started treatment, but it got bad fast like the other one (spread back I mean, along my episiotomy scar) and needed days of diflucan, not just one. The other one was in the summer, when I was on chemo, so no wonder it got bad fast. This time I am not sure...... it's been over a month and a half since my last chemo, and my white count was barely abnormal even then. I hope this is not some new low point for me with yeast infections..... I hope I won't need a 5 day course of diflucan every time I get a yeast infection..... especially since I start with a ONE day dose, and don't know it hasn't worked til after 24 hrs, so it's one day on, one day off, and then 5 days on......

Okay I'm off. Time to take the very patient dog for a walk. We tend to wait on it now that we've fenced in the back yard and can let her out during the day...... which is nice given the way our schedule has been lately -- ALan leaves before 7am, I get the kids out and then get out on my bike at 8-8:10. If you think I have time to walk the dog in there...... she does come out when I get my bike ready, though.....

taste buds

YOu know, I have heard that chemo fatigue lasts for a long time after the chemo is done.  I think I have been extremely fortunate about the whole chemo fatigue thing -- I really didn't have much, and what little I had (which mostly reared its head when it was time to figure out what to cook for dinner..... but maybe I always had that!?) didn't last long after the chemo was done.  I don't think.  I supposed I might wake up one day with lots more energy and say Hey this is what my energy used to be like!  I swear that's happened to me before..... after a viral illness so mild I hadn't realized I was sick..... but I did notice my energy was low.  It was soon after I'd turned 40, for 3 days I was just not psyched to do anything, like work out -- course I did it anyway.  I was just thinking that maybe I'd had 40 years of superior energy (which is a lot more than most people get!) when I woke up and realized I'd been sick.  (I was so happy!)  But I don't that's what's going on now -- for one thing I feel pretty good, not tired, biking faster than the Babes who took the winter off..... 

However the chemo effect on the taste buds seems to be lingering.  I had not thought it would, because it seemed to come and go after every chemo infusion over the winter.  However.... my last chemo was 1/22, and it's still going in and out.  I bought apples today, convinced that my troubles tasting them are now over.  (I have had some days where I've eaten apples and they've been good!)  However, not today.  Apples, and lots of other food (mostly fruit) are missing a good part of their taste.... and I know it's me, not them.  They all have some taste in common, for one thing, which they shouldn't (& don't usually.)  Maybe it's a metallic-like taste.  I wonder how long this lasts.  Maybe Susan Love says something about this.... maybe I will go check.

Well DOne

I'm 2/3 through radiation. It's fine, no real complaints.... it's like a sunburn. Thing is, if it were a sunburn, I pretty much would have gotten the idea by this point (even given my stubborn nature) that it's time to keep that area out of the sun for a bit, & let it heal. It's not real painful, just a bit tender. I'm wearing only large and extra large bras, so that they aren't tight.

There was a clearance at Target recently on sports bras. I was psyched because they were bright colors, and because they are flat until you put something in them, so they fit both sides of my chest... the one with the breast and the flat one. And when I tried them on it turned out that I fit most of the sizes, which at the time was cool because they only had a few left in each size. Now it turns out that those large and extra large bras are the only ones I'm wearing -- and at this rate I might stop wearing them before I'm done. So my remaining boob will droop and my nipple show. I go braless now sometimes anyway.... it's way less big a deal than it used to be with 2 breasts!

ANyway I'm going to walk today I think.... and maybe swim later. (It's beautiful out, warmer outside than in!) I got some great ideas about swimming, thanks to Jennifer and Barry. I think I'm going to try the vaseline idea first, maybe with some plastic wrap between it and my swim suit. Tegaderm turns out to be something they use on me at radiation; I have a small piece of it on me now. The last one they put on me stayed there for weeks, and when it fell off, the skin was dry underneath ...... which means no moisturizer would get into an area covered with tegaderm either, and I don't know that I want to peel it off before it comes off, as it might take some skin with it. So I'll start with vaseline. WHo knows, maybe it will work so well I'll want to use it when I swim after radiation ends, too -- since I have never figured out how to protect my skin and hair from all that chlorine..... Actually I hear there's a product that protects skin -- but the woman who told me didn't remember what it was! I don't want to rely on google because how will I know the good producte from the crap? SO if anyone knows... do tell!

In other news..... I don't know that Emily will appreciate my posting this, but we've had a little trouble with lice. It's going around her school and, well.... it has come to her head. This time, however, it took awhile for us to realize that she had it, because our usual harbinger of lice was silent -- me! Every time in the past that the kids have had lice I've been the first to know, because I always got it too, and having had an awful case of it as a kid, I knew the feeling right away, every time.

But this time....... You know, lice is always a pain in the butt to deal with, but if it has to come to my house, let it come when I'm bald, I say! :-D