Well we decided to brave the crowds and go in, after all. Three of us did, anyway -- Matthew didn't even consider it; he stayed home and didn't even wake up until after Obama had been sworn in. I can't blame him, really -- I couldn't see the jumbatron closest to me anyway. It was more about standing and being counted, like on voting day. Plus it was kinda cool when Bush appeared and people started singing "Na na naa na, na na naa na, hey he-ey, good-bye." But I'm getting ahead of myself.....
Alan and Emily left the house at about 8 and walked to the East Falls Church metro stop, where they waited a good while before going anywhere. ALan said they got to L'Enfant at something like 11:30. I left later and got there earlier -- on my bicycle! I met my friend Joan and her family and we biked in -- I don't think it too much more than half an hour to get in or back out -- from her house - probably 45 minutes, to /from mine. That's actually not much longer than it takes normally, on my fat tires..... maybe 5 minutes? The only bad thing was, I would have liked to have been with ALan and Em, or at least been in touch with them. My phone wouldn't ring when I called Alan.... so I tried Joan's. It rang and I left him a message; he told me afterwards (at home) that it was too loud where he was to have heard it. (I wasn't as close. I could have been, but Joan's husband didn't want to keep trying to get closer through the crowd and I thought it was a bad idea to split up. Our bikes were locked all togeher with all of our various locks......)
Alan and I had chosen a jumbatron to meet near, and it sounds like we were in fact all watching the same one as planned, which takes some work; there were so MANY! -- except that I couldn't see it. They were closer. I was about 30 feet from the Washington Monument -- sounds like Alan and Em were about 30 feet from the screen.
I don't know what the estimates are on the # of people, but they can't possibly have counted us all. I mean I was NOWHERE near the capitol where it was happening, and you hear how crowded it was.....
Anyway biking back was also easy; I was home by 2, having left sometime after 1 I think -- we went over to the bikes and started unlocking them soon as Obama finished speaking. I had changed and eaten and walked the dog and was getting ready to take Matthew to his PT appointment by the time ALan and Em got to Ballston..... that was like 4:15.
We will all have to watch it on the computer later, though. I'm sure you got to take it in better, from the warmth of your living room. what did you think of it?
Tuesday, January 20, 2009
Monday, January 12, 2009
taste buds, chemo burns & health insurance changes
I'm eating an apple and I can taste it -- for the first time in a month or two! I've been making applesauce in order to eat apples up til now.... but the kind I like to make involves cranberries, and apparently when one lives this far from where they are grown they are not in stores after Christmas! (That is quite an adjustment for me..... in MA I swear I bought cranberries any time I wanted. Like cucumbers and tomatoes. ANytime. I had no idea I had to live in MA to do it!)
ANyway about the taste thing -- this particular apple I'm eating tonight is not the kind I usually favor, and I wonder.... I prefer tart apples -- gold rush and stamens have been favorites lately -- except that they haven't, since this round of chemo. So I've been buying whatever's in the 2nds bin at my favorite stand at Farmer's Market, since I'm just going to sauce them anyway. And I think I grabbed a non favorite this evening..... I wonder if it's only tart apples I can't taste enough that they are ruined for me. Hmmm.
Oranges are still bad -- though I had a day a couple of days ago when they were good! I thought it was over (Sat I think it was) but I haven't been able to taste an orange since. (What a waste!) Guavas are still good though. They're expensive, but I'm going to buy some anyway because I taste them really well, much better than all the other fruit.
My chemo burn (the Africa one) is fading nicely -- though it will be awhile still -- and I have a new one of course, on the other side of my arm and lower down, easier to hide. It's red and angry but still underneath. the good news is, it's much smaller than the last one. Like the top of my pinky, from the last joint to the tip. Sideways it's almost the shape of Puerto Rico, but a bit elongated. I'm glad I asked for that last bag of saline -- might have something to do with how much smaller this one is. (I almost skipped it because it was NYEve and I was the last patient there.....) Where will the last one be, I wonder? ONe more week and a few days.....
The other bit of news is, we're going to have to change health insurances. Not carriers; it's still Blue Cross -- but the plan is as different from the present one as night and day. Alan started a new job last week (did I mention that before?) and that's great -- though I can see he's still missing his old one; this is really a change of field, and he liked the prior one. He was good at it, too, but the funding disappeared --so what can you do? The big surprise is that the health insurance at his old job, which was a small non government organization without secure funding sources, was fabulous. It was JUST the insurance to have when you get diagnosed with cancer. They covered everything. (Well almost everything.) NOW suddenly we are going to have to deal with percentages and deductibles and any out of state care is going to cost lots more. (Thank goodness I've had my mastectomy already! This is just one more reason to never get a metastasis....... because I will want to go back to the Mayo if I do!) Moreover, we have to get the "standard" rather than the "basic" plan (which costs more for everything) in order to get my oncologists covered..... Now we have to figure out if it's worth it to cobra for radiation. At the moment we are on cobra for this month while he's getting his bearings and chosing the insurance......
HOwever -- I have once again defeated winter and gone out on a nice 37 mile bike ride despite the cold -- or maybe I should say because of the relative warmth. It's the only day this week that is going to get over 40. Turns out I can bike 40miles in 40° -- good to remember. I should write down what I wore, since it worked. ONly catch is, the dog still wants a walk even though I got my wiggles out -- so off I go to help her with hers!
ANyway about the taste thing -- this particular apple I'm eating tonight is not the kind I usually favor, and I wonder.... I prefer tart apples -- gold rush and stamens have been favorites lately -- except that they haven't, since this round of chemo. So I've been buying whatever's in the 2nds bin at my favorite stand at Farmer's Market, since I'm just going to sauce them anyway. And I think I grabbed a non favorite this evening..... I wonder if it's only tart apples I can't taste enough that they are ruined for me. Hmmm.
Oranges are still bad -- though I had a day a couple of days ago when they were good! I thought it was over (Sat I think it was) but I haven't been able to taste an orange since. (What a waste!) Guavas are still good though. They're expensive, but I'm going to buy some anyway because I taste them really well, much better than all the other fruit.
My chemo burn (the Africa one) is fading nicely -- though it will be awhile still -- and I have a new one of course, on the other side of my arm and lower down, easier to hide. It's red and angry but still underneath. the good news is, it's much smaller than the last one. Like the top of my pinky, from the last joint to the tip. Sideways it's almost the shape of Puerto Rico, but a bit elongated. I'm glad I asked for that last bag of saline -- might have something to do with how much smaller this one is. (I almost skipped it because it was NYEve and I was the last patient there.....) Where will the last one be, I wonder? ONe more week and a few days.....
The other bit of news is, we're going to have to change health insurances. Not carriers; it's still Blue Cross -- but the plan is as different from the present one as night and day. Alan started a new job last week (did I mention that before?) and that's great -- though I can see he's still missing his old one; this is really a change of field, and he liked the prior one. He was good at it, too, but the funding disappeared --so what can you do? The big surprise is that the health insurance at his old job, which was a small non government organization without secure funding sources, was fabulous. It was JUST the insurance to have when you get diagnosed with cancer. They covered everything. (Well almost everything.) NOW suddenly we are going to have to deal with percentages and deductibles and any out of state care is going to cost lots more. (Thank goodness I've had my mastectomy already! This is just one more reason to never get a metastasis....... because I will want to go back to the Mayo if I do!) Moreover, we have to get the "standard" rather than the "basic" plan (which costs more for everything) in order to get my oncologists covered..... Now we have to figure out if it's worth it to cobra for radiation. At the moment we are on cobra for this month while he's getting his bearings and chosing the insurance......
HOwever -- I have once again defeated winter and gone out on a nice 37 mile bike ride despite the cold -- or maybe I should say because of the relative warmth. It's the only day this week that is going to get over 40. Turns out I can bike 40miles in 40° -- good to remember. I should write down what I wore, since it worked. ONly catch is, the dog still wants a walk even though I got my wiggles out -- so off I go to help her with hers!
Thursday, January 8, 2009
Look, suddenly 3 posts in two days....
Can one or two of them count for Christmas week, when I dried up? :-D
I went on 2 bike rides today, totaling 34 miles, on fat tires. It wasn’t supposed to be that way……. First I did the Arlington loop with a newer slower biker; that’s why I started out with the old bike. However – she biked more slowly than I had expected, & it took almost 3 hours to finish the loop (18-19 miles) That's fine for a new rider -- I just didn't watch the time when I was a new rider and didn't realize, now, that the time would run short. Meanwhile, my ride, as enjoyable as it was, was more like a visit than a workout, and I was desperate to meet Joan for a more challenging ride so I could get my wiggles out..... I've been having trouble sleeping unassisted lately, and it's long past the steroids, and long past the fatigue, and time to get tired the way I usually do!
So -- by the time I got back to Bluemont it was 12:45, & I was late to meet Joan and didn’t want to waste any time going home to change bikes, put on padded liners, clip on sandals, and two more pairs of socks… and talk to my mom and get that look on from Pinky that says “another bikeride, instead of taking me for a walk, again?”
Gawd, what am I going to do when Mom leaves…. Tomorrow!? Never thought I’d see her strike up a friendship with a dog, but we had the backyard fenced in in the last month, and now when my mom goes out for a cigarette she takes Pinky with her. She calls Pinky her smoking companion. Pinky goes out and runs around, checks the compost for rodent activity…. pees…. I can get away with taking her out for way fewer walks if I have, uh, been out biking half the day now, and know that she’s been outside. (Know what's funny? I think one of the things Mom and Pinky bonded on is fear of dogs.....Pinky happens to be one herself, but she seems to be afraid of other dogs, not just protecting us, though that's important to her too. I wonder what happened to her in her first 3 years. Mom thinks she was put outside on her own a lot -- because when Mom takes her out she goes out first (Pinky I mean) and then looks back to make sure Mom's coming too......)
Anyway, back to this morning..... early afternoon, actually. I met Joan on fat tires and suddenly the shoe was on the other foot.... Even though Joan was on her hybrid I had to struggle to keep up with her. She didn't complain; I just empathized with her position all too well and made a mental note not to use my old bike with Joan apart from biking to appointments, when I have to, because I will need to lock it up.
And then I got hungry..... Well no -- first I came home from biking with Joan (just as Em was getting home), had a snack, picked up Matthew an hour or two later, got my blood test results (only a little abby-normal this time -- white count high normal as per neulasta, red a little low but not even as bad as during pregnancy, & platelets just below the low end of the normal range. (I think this is the platelet nadir time, so they should start coming back up. ) ANyhow after all but Alan were home we decided to do Chinese takeout for mom's last night here. We ordered it, and got it, came home just as Alan was arriving, and suddenly Mom and I were starving.
I ate like a pig. I feel like I'm about to give birth to a third child..... I was doing so well with eating little meals and now I really have no one to blame but myself for my present bloat, and probable ensuing gassiness....
Oh but on the bright side, guess what? I tasted it all -- every last bite. I may not be able to taste oranges, but no problem with CHinese food. (CHocolate either..... :-)
I went on 2 bike rides today, totaling 34 miles, on fat tires. It wasn’t supposed to be that way……. First I did the Arlington loop with a newer slower biker; that’s why I started out with the old bike. However – she biked more slowly than I had expected, & it took almost 3 hours to finish the loop (18-19 miles) That's fine for a new rider -- I just didn't watch the time when I was a new rider and didn't realize, now, that the time would run short. Meanwhile, my ride, as enjoyable as it was, was more like a visit than a workout, and I was desperate to meet Joan for a more challenging ride so I could get my wiggles out..... I've been having trouble sleeping unassisted lately, and it's long past the steroids, and long past the fatigue, and time to get tired the way I usually do!
So -- by the time I got back to Bluemont it was 12:45, & I was late to meet Joan and didn’t want to waste any time going home to change bikes, put on padded liners, clip on sandals, and two more pairs of socks… and talk to my mom and get that look on from Pinky that says “another bikeride, instead of taking me for a walk, again?”
Gawd, what am I going to do when Mom leaves…. Tomorrow!? Never thought I’d see her strike up a friendship with a dog, but we had the backyard fenced in in the last month, and now when my mom goes out for a cigarette she takes Pinky with her. She calls Pinky her smoking companion. Pinky goes out and runs around, checks the compost for rodent activity…. pees…. I can get away with taking her out for way fewer walks if I have, uh, been out biking half the day now, and know that she’s been outside. (Know what's funny? I think one of the things Mom and Pinky bonded on is fear of dogs.....Pinky happens to be one herself, but she seems to be afraid of other dogs, not just protecting us, though that's important to her too. I wonder what happened to her in her first 3 years. Mom thinks she was put outside on her own a lot -- because when Mom takes her out she goes out first (Pinky I mean) and then looks back to make sure Mom's coming too......)
Anyway, back to this morning..... early afternoon, actually. I met Joan on fat tires and suddenly the shoe was on the other foot.... Even though Joan was on her hybrid I had to struggle to keep up with her. She didn't complain; I just empathized with her position all too well and made a mental note not to use my old bike with Joan apart from biking to appointments, when I have to, because I will need to lock it up.
And then I got hungry..... Well no -- first I came home from biking with Joan (just as Em was getting home), had a snack, picked up Matthew an hour or two later, got my blood test results (only a little abby-normal this time -- white count high normal as per neulasta, red a little low but not even as bad as during pregnancy, & platelets just below the low end of the normal range. (I think this is the platelet nadir time, so they should start coming back up. ) ANyhow after all but Alan were home we decided to do Chinese takeout for mom's last night here. We ordered it, and got it, came home just as Alan was arriving, and suddenly Mom and I were starving.
I ate like a pig. I feel like I'm about to give birth to a third child..... I was doing so well with eating little meals and now I really have no one to blame but myself for my present bloat, and probable ensuing gassiness....
Oh but on the bright side, guess what? I tasted it all -- every last bite. I may not be able to taste oranges, but no problem with CHinese food. (CHocolate either..... :-)
Wednesday, January 7, 2009
Damaged Taste Buds
Taste. When I was on AC (early summer) it was water. Or maybe it was taxol (late summer.) or maybe both. Water tasted bad. I ate a watermelon every 2-3 days to stay hydrated. I was grateful, given the season, that it wasn't mangos.
However, this time it IS interfering with some of my favorite seasonal fruit -- naval oranges and apples. I've been making applesauce, which still works -- but I can't anymore, because the applesauce I like is made with cranberries and apricots, and suddenly there are no cranberries anywhere. I think they're seasonal here. I swear this was NOT a problem in Massachusetts. My mom says her stores (in MA) stop having them after Christmas, but I don't think mine when I was there (bigger stores) did. It does stand to reason that cranberries would be available longer closer to where they are grown...... ANyhow if anyone knows where to find them in VA now I'd love to know.
I wasn't SURE about the navel oranges til just today. I kept thinking that maybe I was getting tasteless oranges. They LOOKED like they should be really good, but sometimes it happens that they look good and they aren't. But I just wasn't getting ANY really good ones. SO they I shared my orange with Emily, who has a discerning tongue (otherwise known as picky.) She said it was a particularly good orange, so I knew I was in trouble...... Then this evening I shared an orange with my mom and the same thing happened...... I told her to eat it because it was wasted on me.
It actually feels like the taste buds down near the tip of my tongue (but not quite at it) are a bit burned or something. They aren't -- and i think after the last two dosesof chemo this happened and got better before the third one. SO maybe I will taste oranges again before inauguration. I hope I don't miss the whole season. Not that it matters compared to the bigger picture.......
However, this time it IS interfering with some of my favorite seasonal fruit -- naval oranges and apples. I've been making applesauce, which still works -- but I can't anymore, because the applesauce I like is made with cranberries and apricots, and suddenly there are no cranberries anywhere. I think they're seasonal here. I swear this was NOT a problem in Massachusetts. My mom says her stores (in MA) stop having them after Christmas, but I don't think mine when I was there (bigger stores) did. It does stand to reason that cranberries would be available longer closer to where they are grown...... ANyhow if anyone knows where to find them in VA now I'd love to know.
I wasn't SURE about the navel oranges til just today. I kept thinking that maybe I was getting tasteless oranges. They LOOKED like they should be really good, but sometimes it happens that they look good and they aren't. But I just wasn't getting ANY really good ones. SO they I shared my orange with Emily, who has a discerning tongue (otherwise known as picky.) She said it was a particularly good orange, so I knew I was in trouble...... Then this evening I shared an orange with my mom and the same thing happened...... I told her to eat it because it was wasted on me.
It actually feels like the taste buds down near the tip of my tongue (but not quite at it) are a bit burned or something. They aren't -- and i think after the last two dosesof chemo this happened and got better before the third one. SO maybe I will taste oranges again before inauguration. I hope I don't miss the whole season. Not that it matters compared to the bigger picture.......
Week after chemo
This time I got my energy back on Tuesday, having had chemo last Wed. Alan said it was about a week, but he's wrong because I don't LOSE the energy til after the steroids wear off. So maybe 4.5-5 days. However ... no bikerides since last Friday when I went to get Neulasta. It's crappy outside. It's winter. Not serious winter like in Boston or Chicago -- there is still hope of biking tomorrow, because it only rained today. So that's a good thing.....
It’s not so nice being bald and having chemo now as it was during the summer. Then it was about not burning my head… how do bald guys do it all year round? I saw a bald guy on the bikepath recently wearing nothing on his head but one of those earbands I used to wear when I had a full head of curly hair. The rest of his head was exposed! I started at him from under my two hats and wondered…..
It’s just one of those things I notice now. The other one is eyebrows. So many people have such nice eyebrows! And since mine are so thinned out I like them fuller and bushier -- in addition to nicely shaped.…… which really brings into question the idea of plucking them. I did try drawing on nice plucked-looking brows at one point – but it didn’t look right and I went back to drawing them the way they used to be – which is something between Matthew’s and Em’s. My kids have such great eyebrows. Matthews are a bit more straight across, and Em’s are nicely arched. Alan’s I have no hope of drawing on ever in life; they are big and bushy like Mike Dukakis’s. (Once he went to get a haircut and before he saw what was happening the hairdresser was shaving them short! He had to let her finish then or he would have had just ONE shaved brow…….Afterwards they looked normal, but they felt stubbly!)
Speaking of stubbly, my head hair is still growing. I shaved it when it started raining hair, but I guess it wasn't ALL going to fall out like it did on adriamycin. It wouldn't make a full head though.
I knit myself a hat yesterday. The one I knit around Christmas decided it wanted to be EMily's. I mean it really looked better on her, and was too small for me. This one is better -- though not exactly the way I had meant it to be. I used this cotton chennile yarn I bought in Cambridge over a decade ago, which goes from green to orange. It was on sale, no one else wanted it. But I love those colors...... :-)
It’s not so nice being bald and having chemo now as it was during the summer. Then it was about not burning my head… how do bald guys do it all year round? I saw a bald guy on the bikepath recently wearing nothing on his head but one of those earbands I used to wear when I had a full head of curly hair. The rest of his head was exposed! I started at him from under my two hats and wondered…..
It’s just one of those things I notice now. The other one is eyebrows. So many people have such nice eyebrows! And since mine are so thinned out I like them fuller and bushier -- in addition to nicely shaped.…… which really brings into question the idea of plucking them. I did try drawing on nice plucked-looking brows at one point – but it didn’t look right and I went back to drawing them the way they used to be – which is something between Matthew’s and Em’s. My kids have such great eyebrows. Matthews are a bit more straight across, and Em’s are nicely arched. Alan’s I have no hope of drawing on ever in life; they are big and bushy like Mike Dukakis’s. (Once he went to get a haircut and before he saw what was happening the hairdresser was shaving them short! He had to let her finish then or he would have had just ONE shaved brow…….Afterwards they looked normal, but they felt stubbly!)
Speaking of stubbly, my head hair is still growing. I shaved it when it started raining hair, but I guess it wasn't ALL going to fall out like it did on adriamycin. It wouldn't make a full head though.
I knit myself a hat yesterday. The one I knit around Christmas decided it wanted to be EMily's. I mean it really looked better on her, and was too small for me. This one is better -- though not exactly the way I had meant it to be. I used this cotton chennile yarn I bought in Cambridge over a decade ago, which goes from green to orange. It was on sale, no one else wanted it. But I love those colors...... :-)
Wednesday, December 31, 2008
3rd Chemo today
Sorry I haven't posted in awhile. I sat down to post a few times, but then decided that I didn't really have anything new to say about the cancer..... we've had a houseful of relatives, too, and I've been hanging out with them more than on the computer I guess..... also, my favorite computer sits in the room that is also the guest room...... I have to curtail my computer activities when people want to go to sleep! (The other computer is the laptop, which Matthew uses a lot, and Em lately does too.... even ALan sometimes does. BUt I don't like it much -- I only use it under duress, like when we're out of town and it's the only one that travels.)
ANyhow I went to my third infusion today. The hard part was having to get up at 7 when my kids didn't have to go to school.....that's probably the REAL reason why they have me take steroids the day before chemo -- so I can pop out of bed like toast after only 4-5 hours' sleep! (BOy that's a dated joke; who has pop-up toasters anymore? It's like telling your kids they sound like broken records.....)
Hmm, I haven't gotten real far with this posting. I'll have to pick up the pace or it's going to be a looooong post!
Okay so I got ready early and was sure I'd be early, but there was a glitch somewhere, because I was 15 mins late, and after a day of attributing it to the gale winds on the ride, I came home to hear my mom tell me that in fact I'd lollygagged getting the house and had left about 15 mins late.
I hadn't read about the wind forecast. There were like 30 mph winds with gusts of up to 50+ mph. When I was biking over the key bridge I was...... very glad that there was a concrete barrier between the sidewalk (where the bikes go too, like the Mass Ave bridge between Cambridge & Boston in MA) and the cars. I debated getting off my bike and walking, but I decided that would give the wind more time to blow my glasses off, so I kept riding. I passed a guy holding onto a pillar to keep from being blown away. I told him I'd never seen anything like this, and he laughed. BUt by the time I passed the next guy, who got onto the bridge after the big gust had passed, there was nothing to say; the wind was once again within the realm of the ordinary.
Joan was later getting out than I so she caught me a little before the MD line. (The routs starts in VA, get to DC after the Key bridge, and bike up the Capitol Crescent trail, where we cross the line into MD about..... maybe 4-5 miles from the doc's office? Joan will know the mileage better than I -- she has a computer on the bike she rides with me to chemo, and I don't.)
The doc said a lot of things, but basically I'm on track and none of the side effects are going to be serious or lasting, so I can continue. He referred me to the nurses about meds to help with indigestion. I got some other thing injected into my infusion bag to help (tagamet.) The indigestion started anyway; I had to roll down my pants in the infusion room, and I don't think it was because of the salad I ate for lunch. I wrote down some ideas the nurse gave me of things I can get at the pharmacy -- so far I've tried mylanta, maalox, and gas-x. The recommendations I got today were for mylecon, tagamet, and prilosec. (If any of youse guys have any experience with or knowledge of these meds, please share!)
My blood counts were good today -- in fact my WBC is high normal, which makes me wonder about the necessity of continuing to get neulasta...... (wbc=9.7, on a scale of 3.8-10.8.) The nurses said I do still need it, because my counts will go down with the chemo, but that if it's above range next time I should talk to the doc about whether or not to get neulasta next time. Even the red count's okay (HGB just in range and HCT just under) and platelets are okay too, 193 on a scale of 140-400.
Oh and then I got this wierd chest thing just at the very end, hours after I'd finished with the taxotere (which can cause breathing problems, but usually within the first 15 mins of the drip.) When I breathed in deeply it was like.... you know when you have a cold and suddenly it threatens to move into your chest and become bronchitis or pneumonia? It was like that, except I don't have a cold. I was okay when breathing regularly. They took my BP and listened to my chest and pronounced me well and fit to bike home. I wondered..... we talked about what to do if it got worse (georgetown ER is on the way home.)
In fact it was the right decision; when I got outside the wind was clearly a bigger problem than my chest, and the wind also seemed calmer once we got onto the trail. (There's .5-1 mile of streets between the medical office building and the trail entrance.) Then when we were only a third of the way home I realized that my chest was all better! I guess it needed some deep heavy biking breathing to help it go away. (YOu know, that works when I'm actually sick, too -- when I'm getting better but still feeling crud in my chest. And now I'm remembering that it helped get the anesthesia out of my lungs after surgery.)
Joan and I had debated taking the train home instead of riding because of the winds, but we were glad we didn't, because it wasn't as bad as the morning had been -- though actually I took long enough getting home that Alan and the other folks on the home front were worried. I've done it in an hour after eye appointments, but this took an hour 45 mins. (BUt hey I was on benadryl..... and chemo, but I think it's the benadryl at that point -- tomorrow it will be the chemo.) I didn't feel slow, but I can always tell I am anyway when Joan has to stop and wait at the tops of hills...... (THey haven't worried before but they haven't been home before -- I'm usually just late for the kids. THEY only worried last time when Matthew was sick and his fever started to go up...... and rightly so! Guess who took care of him..... but I wrote about that, didn't I?)
Anyway I was proud of myself today for not only having ridden all 26 miles in strong winds, but for having enjoyed it too! :-D
ANyhow I went to my third infusion today. The hard part was having to get up at 7 when my kids didn't have to go to school.....that's probably the REAL reason why they have me take steroids the day before chemo -- so I can pop out of bed like toast after only 4-5 hours' sleep! (BOy that's a dated joke; who has pop-up toasters anymore? It's like telling your kids they sound like broken records.....)
Hmm, I haven't gotten real far with this posting. I'll have to pick up the pace or it's going to be a looooong post!
Okay so I got ready early and was sure I'd be early, but there was a glitch somewhere, because I was 15 mins late, and after a day of attributing it to the gale winds on the ride, I came home to hear my mom tell me that in fact I'd lollygagged getting the house and had left about 15 mins late.
I hadn't read about the wind forecast. There were like 30 mph winds with gusts of up to 50+ mph. When I was biking over the key bridge I was...... very glad that there was a concrete barrier between the sidewalk (where the bikes go too, like the Mass Ave bridge between Cambridge & Boston in MA) and the cars. I debated getting off my bike and walking, but I decided that would give the wind more time to blow my glasses off, so I kept riding. I passed a guy holding onto a pillar to keep from being blown away. I told him I'd never seen anything like this, and he laughed. BUt by the time I passed the next guy, who got onto the bridge after the big gust had passed, there was nothing to say; the wind was once again within the realm of the ordinary.
Joan was later getting out than I so she caught me a little before the MD line. (The routs starts in VA, get to DC after the Key bridge, and bike up the Capitol Crescent trail, where we cross the line into MD about..... maybe 4-5 miles from the doc's office? Joan will know the mileage better than I -- she has a computer on the bike she rides with me to chemo, and I don't.)
The doc said a lot of things, but basically I'm on track and none of the side effects are going to be serious or lasting, so I can continue. He referred me to the nurses about meds to help with indigestion. I got some other thing injected into my infusion bag to help (tagamet.) The indigestion started anyway; I had to roll down my pants in the infusion room, and I don't think it was because of the salad I ate for lunch. I wrote down some ideas the nurse gave me of things I can get at the pharmacy -- so far I've tried mylanta, maalox, and gas-x. The recommendations I got today were for mylecon, tagamet, and prilosec. (If any of youse guys have any experience with or knowledge of these meds, please share!)
My blood counts were good today -- in fact my WBC is high normal, which makes me wonder about the necessity of continuing to get neulasta...... (wbc=9.7, on a scale of 3.8-10.8.) The nurses said I do still need it, because my counts will go down with the chemo, but that if it's above range next time I should talk to the doc about whether or not to get neulasta next time. Even the red count's okay (HGB just in range and HCT just under) and platelets are okay too, 193 on a scale of 140-400.
Oh and then I got this wierd chest thing just at the very end, hours after I'd finished with the taxotere (which can cause breathing problems, but usually within the first 15 mins of the drip.) When I breathed in deeply it was like.... you know when you have a cold and suddenly it threatens to move into your chest and become bronchitis or pneumonia? It was like that, except I don't have a cold. I was okay when breathing regularly. They took my BP and listened to my chest and pronounced me well and fit to bike home. I wondered..... we talked about what to do if it got worse (georgetown ER is on the way home.)
In fact it was the right decision; when I got outside the wind was clearly a bigger problem than my chest, and the wind also seemed calmer once we got onto the trail. (There's .5-1 mile of streets between the medical office building and the trail entrance.) Then when we were only a third of the way home I realized that my chest was all better! I guess it needed some deep heavy biking breathing to help it go away. (YOu know, that works when I'm actually sick, too -- when I'm getting better but still feeling crud in my chest. And now I'm remembering that it helped get the anesthesia out of my lungs after surgery.)
Joan and I had debated taking the train home instead of riding because of the winds, but we were glad we didn't, because it wasn't as bad as the morning had been -- though actually I took long enough getting home that Alan and the other folks on the home front were worried. I've done it in an hour after eye appointments, but this took an hour 45 mins. (BUt hey I was on benadryl..... and chemo, but I think it's the benadryl at that point -- tomorrow it will be the chemo.) I didn't feel slow, but I can always tell I am anyway when Joan has to stop and wait at the tops of hills...... (THey haven't worried before but they haven't been home before -- I'm usually just late for the kids. THEY only worried last time when Matthew was sick and his fever started to go up...... and rightly so! Guess who took care of him..... but I wrote about that, didn't I?)
Anyway I was proud of myself today for not only having ridden all 26 miles in strong winds, but for having enjoyed it too! :-D
Sunday, December 21, 2008
Chemo burn
I have this burn on the back of my left hand -- I had been assuming that I must have burned myself somehow on Friday, when I had myself a little cooking party and made brownies and that yummy red lentil - oat soup I can't seem to get enough of these days. I've been keeping an eye on the burn and putting vitamin E on it, and marveling at its rather large size and my obvious pain tolerance/ obliviousness in having completely missed getting it! (I have always been proud of my high pain tolerance threshold, but lately I am seeing that the obliviousness on the flip side of that can be dangerous...... Someone in better tune with their body -- a whiner even!-- would have caught the breast cancer sooner, I think. YOu know those people who go to the doctor saying "I don't know; it just doesn't feel right." Yeah, that's the kind of awareness I'm missing..... somehow gradual change just seems like the new reality to me.....)
Anyway so in the early morning when I woke up (middle of the night for me) I realized that the burn was not behaving like a regular burn either, exactly, and didn't feel quite like a regular burn. I also realized that it happens to be the injection site of my last chemo, and it hurt for days after the chemo was done. In fact I can't tell you whether it ever stopped hurting (since it only hurt when I touched it -- so I mostly didn't.) I made the connection because it hurts now, where it's red, though not very much -- and I'm pretty sure it's the same hurt as right after (and maybe during?) chemo. Maybe it's hurt the whole time since then (over a week.) Isn't that interesting? I don't think it's dangerous, but I had Alan take a picture so I can show them next time I go for chemo.
I found an online discussion where someone describes a chemo burn exactly like mine and recommends preparation H for it -- so I put some on. However, the burn really seems to be on the inside more than the outside......
In terms of other stuff...... My indigestion was bad yesterday pm (after we went out for Mexican food..... despite how careful I thought I was!) but is much better today (haven't eaten anything but tea and brownies -- the ones I made are pretty healthful actually.)
I walked the dog for over 2 hrs yesterday (I'm guessing 7.5 miles; they felt like 17 min miles rather than 15) which was very nice. Today I managed to get out of going shopping with everyone else -- because Mom's here and drove them! However, I lost the option of going swimming while they are out because I left my pool bag in the trunk of the car, which they have....... so I guess I should take Pinky out for another walk.... The sun did JUST come out; maybe it's a nice day for it.
I'm still going to have to do some CHristmas shopping, unfortunately, though I think the gang may help me while they are out...... and I have started to make a couple of things, which is infinitely cooler -- especially if I get them finished!!! :-D
Anyway so in the early morning when I woke up (middle of the night for me) I realized that the burn was not behaving like a regular burn either, exactly, and didn't feel quite like a regular burn. I also realized that it happens to be the injection site of my last chemo, and it hurt for days after the chemo was done. In fact I can't tell you whether it ever stopped hurting (since it only hurt when I touched it -- so I mostly didn't.) I made the connection because it hurts now, where it's red, though not very much -- and I'm pretty sure it's the same hurt as right after (and maybe during?) chemo. Maybe it's hurt the whole time since then (over a week.) Isn't that interesting? I don't think it's dangerous, but I had Alan take a picture so I can show them next time I go for chemo.
I found an online discussion where someone describes a chemo burn exactly like mine and recommends preparation H for it -- so I put some on. However, the burn really seems to be on the inside more than the outside......
In terms of other stuff...... My indigestion was bad yesterday pm (after we went out for Mexican food..... despite how careful I thought I was!) but is much better today (haven't eaten anything but tea and brownies -- the ones I made are pretty healthful actually.)
I walked the dog for over 2 hrs yesterday (I'm guessing 7.5 miles; they felt like 17 min miles rather than 15) which was very nice. Today I managed to get out of going shopping with everyone else -- because Mom's here and drove them! However, I lost the option of going swimming while they are out because I left my pool bag in the trunk of the car, which they have....... so I guess I should take Pinky out for another walk.... The sun did JUST come out; maybe it's a nice day for it.
I'm still going to have to do some CHristmas shopping, unfortunately, though I think the gang may help me while they are out...... and I have started to make a couple of things, which is infinitely cooler -- especially if I get them finished!!! :-D
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