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Tuesday, March 17, 2009

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.

Sunday, March 15, 2009

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.....

Saturday, March 7, 2009

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

Wednesday, March 4, 2009

swimming

I'm halfway through week 4 -- so I have 2.5 weeks left. So far so good, though Alan and Em agree that it's not pretty. It's a bit spotty and red I guess, and if I touch it in the middle of my chest it feels a bit itchy. Also, when I roll over to sleep face down it bothers me sometimes, so I've started using that pillow I got in the hospital (moon shaped) that i used to sleep fact down soon after the surgery. It works well.

I'm also still using vitamin E oil and the stuff Janet sent me on the chest site, and washing my chest in the morning before I go in -- since I think those things help my skin heal, and the doc is worried about the oil making me burn more.

SOmetimes bras hurt, but only tight ones -- so I'm wearing mostly large and extra large ones now. Sports bras, these are -- it turns out all sizes fit -- everything from small to XL. (I figured this out when target was having a clearance on their brightly colored sports bras.) The cool thing about sports bras are, they fit any size breast -- or non breast! And the two sides of the chest don't have to match; I don't have to wear anything on my right side for the bra to look fine. I think it looks quite nice -- I think people are just used to women looking symmetrical. So now I'm not symmetrical. People will get used to it. I got used to wearing mismatched earrings -- which was hard at first! And now the mismatched earrings go rather nicely with the lopsided chest! Course.... if I had realized I would be losing my right breast maybe I would have had the extra two piercings done in my right ear to balance it out -- so I'd have more earrings where the chest is flat Now I'm left-side heavy, both boob and earrings. It's not really noticeable though.

ANyway -- today I saw the radiation onc. He said that if he were in my situation he'd stop swimming now. He can see that I feel fine, though, and he knew just looking at me that I'm not ready to give up swimming. I will keep an open mind, and watch the skin for breaks..... I think he likes my spirit....

I have this stubborn voice in my head. People said I might not be able to bike through chemo, and the voice said, just watch me. Now I am hearing that maybe I should stop swimming..... and I'm thinking, maybe not.

Probably should go to bed, though. Going....

Thursday, February 26, 2009

almost halfway through

When I saw the doc this week he said I might need to stop swimming for awhile...... actually he said I would want to stop swimming for awhile. I had to press him to clarify, because I would keep swimming if I could, and pain would not stop me..... Aside from my knee jerk stubborn reaction (when they tell me "YOu won't be able to" I think "Oh yeah? Just watch me!") swimming's been real helpful for the post surgical troubles....... I've had just a slight bit of lymphadema (1 cm swelling in the top of my right arm, gone after PT) but I have roping under my arm -- like trolley lines! I think the swimming helps address it -- not to mention working out the biking kinks, helping my knee, and helping me sleep and relax......

ANyway when pressed the rad onc said that I might need to stop swimming for as much as a month, starting in a week. He said that I can swim if the skin is red, but if it breaks he wants me not to -- he's worried more about germs and infection than chlorine. (With all that chlorine, you'd think the germs wouldn't have a chance!) I am going to work on keeping my skin in good shape so I can swim -- or at least cut that month down to a week or two. And.... I hear tell there is something that can be put on the skin to protect it during swimming. If anyone knows what it is...... please share!

Thursday, February 19, 2009

Radiation Protection

I've been getting radiation every day for the last almost 2 weeks -- and additionally I get x-rays on Thursdays, so the doc can check on what they are doing and make sure it's still right. It's a very nice team and the radiation onc is great -- quite possibly the best doctor I've seen yet, though that's a tough one. (Have I mentioned that since I changed medical oncologists to do the last course of chemo I am now in a quandary about which one to stick with, because I like them both, and they both seem to be good at what they do.....?)

I haven't had to wait very long yet, except for the first two days when they were working on getting the positioning of my radiation exactly right. Usually that's just one day but the doc said he decided afterwards that there was a better way he could aim the radiation which would involve less of my lung. (I'm lucky that the breast cancer was in my right breast, so no heart issues with radiation.) About 10% of my lung will be affected, which should be okay since I'm not a smoker, the doc said. And of course you know my theory on all this stuff: as long as I keep biking and swimming and walking, lots, as usual..... well I mean it has to be like the opposite of smoking, to some extent, right? except for when I'm swimming and somehow there is cigarette smoke at the far end of the pool..... I've never SEEN anyone smoking; it might be in the next room and coming through the vents..... and there was a time when they actually had people come paint on the far end of the pool.... during the midday swim! At the high school pool, while school is in session! OKay, the pool is open every day, but if they had waited til summer the doors are open, at least.... Sorry, major digression there.

Anyway, back to the radiation thing. While I'm doing radiation I see the radiation oncologist every week, generally on Tuesdays, after I've had radiation -- though he's flexible if I have something else I need to do. He's good at explaining things, and he has okayed my bringing my bike in, should I be planning to ride with the Babes after rads, in which case I need to ride my nice bike to treatment. (I am unwilling to risk locking it outside -- bike theft is apparently big business around here, and no lock is unpickable.) MOst days I ride my 20 yr old mountain bike, and double lock it out there, hoping it would not be worth the trouble to steal -- most of the other bikes on the rack certainly look more tempting. Anyway last Tuesday I asked the doc why I have no lead protection while I am getting radiation, for the parts of my body that don't need it. I can feel it in my eyes..... (I close them, but my lids are not lead.) I was thinking he would say it was aimed very specifically, and that lead was not needed. Alan thought so too. I was planning to ask for lead aprons anyway, for my peace of mind. I still want them. I will have to try again. I was so taken aback by the doc's response that I forgot to ask for them.

What he said was quite the opposite of what I was expecting. There is so much radiation, he said, that I would need something the size of a safe to protect the rest of me from it -- and of course it would crush me. However, he also said that we have been conditioned to fear radiation, when in fact it is mostly children that are at risk from it, while their cells are still flexible. He said that it's not a big deal for the rest of us. (I did find myself wondering whether some of us have more flexible cells as adults..... but then I decided it probably bears no relation to personality....or inner youthfulness....) He said that they do sometimes administer radiation to children, but it's sad -- because they only do it when they must, when the child has something that would kill him or her now -- because s/he will probably get some kind of tumor 10-15 yrs later, from the radiation.

That gave me some pause, and some perspective on my situation. Whew, thank goodness I only have breast cancer, and not a kid with cancer who needs radiation badly enough to have it despite the likelihood that s/he will get a tumor later.....