I so wanted to make it to georgetown to see my chemo buddies today -- but I had so much trouble getting myself up and awake that the day is too much gone for me to do that AND get the car to the mechanic, which is important given the drive to the Catskills tomorrow.
I'm worried about that too -- we're psyched to go to Steve and Liz's wedding!! (Steve is ALan's cousin.) However, I don't love driving, and 6.5 hrs each way is a long time, and there really isn't another reasonable way to get to the Catskills. Steve hooked us up with some other people around here to try to carpool with, and we were going to rent a minivan -- but it fell through because they wanted to leave early and Matthew needs to go to school first. At least he has a half day so we can leave at 12:30..... It makes sense -- the wedding weekend starts with a barbecue on Friday night, which we will probably miss (We might have made half of it with other drivers for me to trade off with -- but they have a shot at making the whole thing.) AND schools around here are uptight about missed days --especially high school. (Em would have missed the day happily -- but she's in 6th grade. Matthew's in 10th, and has 2 tests on Friday....)
ANyway. I have to get going so I can at least get the car to the mechanic. I guess I'm not surprised to be tired -- I did bike 70 miles in the past 2 days -- however, it feels like the deep exhaustion of chemo fatigue, when I get up from a nap with effort and an alarm.
I did all that biking because the weather's been perfect, and the biking has been wonderful -- and I knew I wouldn't have a lot more chances before the trip this weekend, the weather changes, and I go to MInnesota for surgery -- after which I definitely won't be recovered until it's cold. I will still bike in the cold (as long as it's not icy) but it's a whole different thing then. I'll have to dress carefully or I will be cold. (Too few layers and I'm cold -- too many layers and I sweat and the sweat freezes and I'm also cold. It's tricky!) Meanwhile I have been icing my knee -- though it has been fine -- so it won't go out again like it did last Wednesday.
Meanwhile I am sad to miss seeing my chemo buddies. Next Thursday for sure -- it's my last chance to catch 3 of them there. And I won't miss because I have an appointment with a radiation oncologist at 9:30 just a few flights below.
Thursday, October 16, 2008
Monday, October 13, 2008
improved energy
My body aches are still there but not so bad and I am taking medicine less and less often. The dose of advil I took yesterday pm lasted 24 hrs. It was enough that I thought i was done, but then the aches came back tonight -- and i really did feelsorta bad for a little while while I waited for the next dose to kick in. Nothing like before, though.
And the energy -- okay, this is not the way you want your energy to present, but it's how mine often does, though it hadn't in awhile, so it's telling. This is what happened:
I didn’t get the workout I usually get on Friday, because my knee started to hurt on Wednesday's bikeride. I went to the chiropractor Wed afternoon (I have a great chiropractor who fits me in.....) but it was worse than he thought because it bothered me on Thursday when I was just biking to Georgetown for transportation. The point there is that it's waaaay fewer miles. I biked 37 miles on Wednesday and 12 on Thursday, 6 each way with a break in between for hours, since after my MD appt I went upstairs to visit with my chemo buddies.....
So okay, short ride on Thursday and nothing else because I spent all my time hanging with the chemo buddies, Friday I swam, and then I only walked on the weekend, 4m each day. People make fun of me for tracking it so carefully, but keep reading..... Last night I had a harder time sleeping than I anticipated, even for a Sunday night after sleeping later hours on the weekend. I mean, I almost slept for the 3-4 hours I was in bed. I kept waking up and checking the time, and when the alarm went off I was not even upset; it was more like, Good, I can stop trying to sleep. And then I got up and after the kids went to school I made almost all of the phone calls (appointments and other medical and travel type obligations) that had been hanging over my head.(almost because I remembered later that there’s one more I have to do.) Of course I didn’t reach everyone and expect call backs (which will all come in tomorrow when I’m on my bike, no doubt.) Then I ate, went to my chiropractor, and went to the pool and swam 90 lengths, a mile and a quarter, for the first time in months….. maybe since before the chemo. I did this on I don't know what sleep -- and no caffeine or chocolate..... That's the energy I remember -- sometimes.
I had planned to go to bed early tonight to make up for it – but I haven’t. I will soon. Of course it's not early anymore. It’s nice to feel like myself again, though it includes the need for careful balancing of exercise and life to avoid the trouble sleeping. (Call it a preexisting condition. You didn't think I was so diligent about exercising all the time just because, did you? I'm thinking it's somehow related to the ADHD. The H part, especially.....)
On the other hand I have been having awful indigestion. No particular cause I can find, either – it seems like my gut would rather I had a snack at dinnertime than a big meal. (I’ve heard that works better for us.... ) THis happens to me sometimes but not all the time, and I can never figure out why -- what food, what quantity, what else to look for. Sometimes it's a bug -- and Em did complain about a stomach ache.... but we're being careful these days, and I haven't been sharing her food and bugs -- though I guess I could have caught a bug anyway.
Okay I'm off. I'm planning to ride to Bethesda tomorrow and ride with the Bethesda Babes. I need to take my knee to bed and be good to it so it lets me.....
And the energy -- okay, this is not the way you want your energy to present, but it's how mine often does, though it hadn't in awhile, so it's telling. This is what happened:
I didn’t get the workout I usually get on Friday, because my knee started to hurt on Wednesday's bikeride. I went to the chiropractor Wed afternoon (I have a great chiropractor who fits me in.....) but it was worse than he thought because it bothered me on Thursday when I was just biking to Georgetown for transportation. The point there is that it's waaaay fewer miles. I biked 37 miles on Wednesday and 12 on Thursday, 6 each way with a break in between for hours, since after my MD appt I went upstairs to visit with my chemo buddies.....
So okay, short ride on Thursday and nothing else because I spent all my time hanging with the chemo buddies, Friday I swam, and then I only walked on the weekend, 4m each day. People make fun of me for tracking it so carefully, but keep reading..... Last night I had a harder time sleeping than I anticipated, even for a Sunday night after sleeping later hours on the weekend. I mean, I almost slept for the 3-4 hours I was in bed. I kept waking up and checking the time, and when the alarm went off I was not even upset; it was more like, Good, I can stop trying to sleep. And then I got up and after the kids went to school I made almost all of the phone calls (appointments and other medical and travel type obligations) that had been hanging over my head.(almost because I remembered later that there’s one more I have to do.) Of course I didn’t reach everyone and expect call backs (which will all come in tomorrow when I’m on my bike, no doubt.) Then I ate, went to my chiropractor, and went to the pool and swam 90 lengths, a mile and a quarter, for the first time in months….. maybe since before the chemo. I did this on I don't know what sleep -- and no caffeine or chocolate..... That's the energy I remember -- sometimes.
I had planned to go to bed early tonight to make up for it – but I haven’t. I will soon. Of course it's not early anymore. It’s nice to feel like myself again, though it includes the need for careful balancing of exercise and life to avoid the trouble sleeping. (Call it a preexisting condition. You didn't think I was so diligent about exercising all the time just because, did you? I'm thinking it's somehow related to the ADHD. The H part, especially.....)
On the other hand I have been having awful indigestion. No particular cause I can find, either – it seems like my gut would rather I had a snack at dinnertime than a big meal. (I’ve heard that works better for us.... ) THis happens to me sometimes but not all the time, and I can never figure out why -- what food, what quantity, what else to look for. Sometimes it's a bug -- and Em did complain about a stomach ache.... but we're being careful these days, and I haven't been sharing her food and bugs -- though I guess I could have caught a bug anyway.
Okay I'm off. I'm planning to ride to Bethesda tomorrow and ride with the Bethesda Babes. I need to take my knee to bed and be good to it so it lets me.....
Friday, October 10, 2008
looking at the end of chemo....
I just finished chemo a week ago. I have read that however long a chemo patient is tired while on chemo, s/he will be tired for that long again after it's done. I was tired at the end there..... the last 3-4 weeks, maybe? HOwever, it wasn't all the time, just more often than usual. Like some days I would go back to sleep after the kids and Alan had left for school and work -- if it was a day without a bike ride or chemo. I feel more energetic just after one chemo-free Thursday. However, I still want more sleep. (Yeah I'm going up to bed, right after this.)
Anyway on the days that I'd nap in the morning I'd set my alarm to I could make it to the midday swim. I’d fall into a deep sleep accessible only in the morning, it seems, and when the alarm would go off (two hours later!) I’d be completely wiped, no interest in waking up. (that's chemo, not how I usually awaken from naps.) I always made myself, though, and until maybe the last week or two I always felt better after I swam. Maybe it was just the last week that was a struggle. There was one day (just last week) when I didn’t make it to swim, and walked the dog instead – for an hour, a good walk…. But the swim I had meant to catch was ending about when I started the walk; it was a matter of needing more recovery time.
That was the day after I had taken the morphine on an emptier stomach than I realized…..I felt still full from a snack I’d had an hour or so before, but I woke up so nauseated the next morning that I couldn’t help with the kids….. and then by the time I woke up again from the nap I probably had low blood sugar too….. At least I had thought to have Alan put some food by the bed for me before he went to work so I could get something into me before I got up and got nauseated again. However – that whole problem was because of mismanagement of meds (I took it on an emptyish stomach) and preexisting problems (tendency to get low blood sugar.) The main thing that was chemo related was the fact that I was taking morphine in the first place.. And by the way – I was taking it not because the pain I was feeling was so severe. It was flulike body aches that I had (still have, but less now.) The problem was that I had flulike body aches for about 6 weeks. I’m not sure I’d ever felt anything for that kinda time before…… and lemme tellya, it gets old after about 3. (Well for the first two I was trying to heal myself because I really thought it was some viral thing.)
Anyway, I started to get tired a good month after the body aches started. I can't promise I was tired entirely because of the chemo, though.... ONce school started our alarm started going off at 6am. Honestly I've always fantasized about taking a nap after they’d all left.... I just never let myself until I got a cancer diagnosis. :-D Now maybe I will let myself more often...... I mean, really, getting up in the dark is inhumane.
I always feel bad waking the kids that early. As it gets colder I often sometimes let Matthew sleep later and drive him to school. It's bad on the gas but nicer on his sleep. I’ve been pretty strict with him this fall, though, because he gets into habits and I know I won’t be up for driving him after my surgery. So now we have a deal…. The deal I wanted was no screen time after 10pm on weekdays – I figured that way he’d get sleepy on his own… reasonable, right? Well he didn’t go for it, so now we have a different deal – as long as he’s pleasant in the morning and makes it to his school bus, he can control his bedtime…. The day he grouses at me or misses his bus his bedtime is mine. It’s funny to see him in the morning…. I come in and wake him and ask him how he slept – and he goes straight from being completely out of it to “Huh? Oh -- fine, thanks!” He is really good at it – he can almost do it in his sleep…… now if he can just avoid getting sick…..
Anyway on the days that I'd nap in the morning I'd set my alarm to I could make it to the midday swim. I’d fall into a deep sleep accessible only in the morning, it seems, and when the alarm would go off (two hours later!) I’d be completely wiped, no interest in waking up. (that's chemo, not how I usually awaken from naps.) I always made myself, though, and until maybe the last week or two I always felt better after I swam. Maybe it was just the last week that was a struggle. There was one day (just last week) when I didn’t make it to swim, and walked the dog instead – for an hour, a good walk…. But the swim I had meant to catch was ending about when I started the walk; it was a matter of needing more recovery time.
That was the day after I had taken the morphine on an emptier stomach than I realized…..I felt still full from a snack I’d had an hour or so before, but I woke up so nauseated the next morning that I couldn’t help with the kids….. and then by the time I woke up again from the nap I probably had low blood sugar too….. At least I had thought to have Alan put some food by the bed for me before he went to work so I could get something into me before I got up and got nauseated again. However – that whole problem was because of mismanagement of meds (I took it on an emptyish stomach) and preexisting problems (tendency to get low blood sugar.) The main thing that was chemo related was the fact that I was taking morphine in the first place.. And by the way – I was taking it not because the pain I was feeling was so severe. It was flulike body aches that I had (still have, but less now.) The problem was that I had flulike body aches for about 6 weeks. I’m not sure I’d ever felt anything for that kinda time before…… and lemme tellya, it gets old after about 3. (Well for the first two I was trying to heal myself because I really thought it was some viral thing.)
Anyway, I started to get tired a good month after the body aches started. I can't promise I was tired entirely because of the chemo, though.... ONce school started our alarm started going off at 6am. Honestly I've always fantasized about taking a nap after they’d all left.... I just never let myself until I got a cancer diagnosis. :-D Now maybe I will let myself more often...... I mean, really, getting up in the dark is inhumane.
I always feel bad waking the kids that early. As it gets colder I often sometimes let Matthew sleep later and drive him to school. It's bad on the gas but nicer on his sleep. I’ve been pretty strict with him this fall, though, because he gets into habits and I know I won’t be up for driving him after my surgery. So now we have a deal…. The deal I wanted was no screen time after 10pm on weekdays – I figured that way he’d get sleepy on his own… reasonable, right? Well he didn’t go for it, so now we have a different deal – as long as he’s pleasant in the morning and makes it to his school bus, he can control his bedtime…. The day he grouses at me or misses his bus his bedtime is mine. It’s funny to see him in the morning…. I come in and wake him and ask him how he slept – and he goes straight from being completely out of it to “Huh? Oh -- fine, thanks!” He is really good at it – he can almost do it in his sleep…… now if he can just avoid getting sick…..
last MD visit before surgery
Well she agreed that it had shrunk more, but I don't think she ever considered the idea of giving me more chemotherapy though I had brought it up as a question before, and sent her an email letting her know I would be asking again at yesterday's visit. I'm not sure how I feel about that but there's nothing I can do about it either. It's nice to be done, but I don't understand stopping when it's working just because of a protocol - and mostly it really pisses me off that in the end the discussion doesn't really matter; we do what she says because she's the doctor!
I suppose the protocols really do bind her -- but I would like my wishes to matter here more than they feel like they do, and I would like some recognition that what I do and say matters...... She said that my response to the chemo had been better than expected. Well maybe there is a problem with their expectations -- I expected it! (It IS pretty cool, though.)
Afterwards I went upstairs and visited with my chemo buddies. It was really nice to hang with them. Too bad I booked up the next two Thursdays with medical appointments. I'm going to have to see if I can change them to other days so I can go see the gang again; all but one of them will finish their treatments by the time I'm in MInnesota, and it will be harder to get together after that -- especially since we'll all still have more treatment. (Three of us will have surgery and then radiation in different places & on different schedules. I don't know what happens when surgery was before chemo -- is there radiation after or did it happen already, or is it skipped.....?)
So now I have to make lots of appointments... some with radiation oncologists so I can figure out which one to go to for radiation, and set that up. Also I have to see if I can get a surgeon here who will do my post-op visit so I don't have to go to Minnesota twice. (If anyone has any ideas or recommendations on that score please tell me!) Oh and I have to get a rental van set up for next Friday through Sunday so we can carpool with some other folks to the wedding in the catskills and I don't have to drive all 13 hrs myself. I think the other people in the carpool want to leave before noon, though, and Matthew doesn't want to skip school. He happens to have a half day -- they both do -- and I was hoping that 12:15 would work for people, but they are worried about hitting NYC at rush hour, and that's probably about right. However, it's also true that the high school and middle school teachers here are extremely uptight about missed school........
Meanwhile I'm still tired and would rather put it all off and take a nap -- since I can't go on the bikeride on this BEAUTIFUL DAY!!! My knee went out on Wednesday's ride and I have to rest it and maybe take it to the chiropractor again.
I suppose the protocols really do bind her -- but I would like my wishes to matter here more than they feel like they do, and I would like some recognition that what I do and say matters...... She said that my response to the chemo had been better than expected. Well maybe there is a problem with their expectations -- I expected it! (It IS pretty cool, though.)
Afterwards I went upstairs and visited with my chemo buddies. It was really nice to hang with them. Too bad I booked up the next two Thursdays with medical appointments. I'm going to have to see if I can change them to other days so I can go see the gang again; all but one of them will finish their treatments by the time I'm in MInnesota, and it will be harder to get together after that -- especially since we'll all still have more treatment. (Three of us will have surgery and then radiation in different places & on different schedules. I don't know what happens when surgery was before chemo -- is there radiation after or did it happen already, or is it skipped.....?)
So now I have to make lots of appointments... some with radiation oncologists so I can figure out which one to go to for radiation, and set that up. Also I have to see if I can get a surgeon here who will do my post-op visit so I don't have to go to Minnesota twice. (If anyone has any ideas or recommendations on that score please tell me!) Oh and I have to get a rental van set up for next Friday through Sunday so we can carpool with some other folks to the wedding in the catskills and I don't have to drive all 13 hrs myself. I think the other people in the carpool want to leave before noon, though, and Matthew doesn't want to skip school. He happens to have a half day -- they both do -- and I was hoping that 12:15 would work for people, but they are worried about hitting NYC at rush hour, and that's probably about right. However, it's also true that the high school and middle school teachers here are extremely uptight about missed school........
Meanwhile I'm still tired and would rather put it all off and take a nap -- since I can't go on the bikeride on this BEAUTIFUL DAY!!! My knee went out on Wednesday's ride and I have to rest it and maybe take it to the chiropractor again.
Wednesday, October 8, 2008
actually my whole right BREAST is shrinking!
Emily and I finally posed for our "before" pictures, she in her "new" bikini that I got her early in the summer, and I in my new bikini that she picked out for me at Old Navy at their end of summer sale -- in early to mid August, that was. I don't know if I wrote about that at the time -- but it was pretty cool, because my right breast was too big for the suit, and I bought it thinking that that wouldn't be a problem next summer, post mastectomy. (In fact the individual bra cups remove, so if I ever wanted to make a statement......) I also kinda like the idea of getting a new bikini before a mastectomy, thumbing my nose at any idea that perhaps my bikini days are over. HOwever, I honestly would not have thought of it; it was EMily's idea, and she insisted I get the suit. And it does look good, and the top looked good on her, too (good enough that she is going to have to, um, borrow it sometime.... ) so it will look okay on a flat chest. AND it was only $10..... :-)
Anyway so we posed for pictures tonight, the plan being that we will do it again next summer (or before, whenever it's warm enough to get the suits out) when SHE has breasts (trust me on this; it won't be long now) and I have only one. So anyway I put the suit on last night, thinking as I did that maybe I should pose in a different suit that look better, since I still have my right breast, which was falling out of the suit top when I tried it on in the store changing room. Well when I put on the suit last night, it fit. The bikini top fit fine on both breasts. My right breast is no longer too large for the swimsuit.... how big WAS that tumor????
In fact it looked so good I felt sorry about getting rid of the breast. I suppose I could have a lumpectomy, but...... I want clean margins, and when you start out with a 7cm tumor, who knows if anything got left behind in the shrinkage? Nah, I will learn to be lopsided.
OKay I will leave off now -- perhaps I will have some real news tomorrow.
Anyway so we posed for pictures tonight, the plan being that we will do it again next summer (or before, whenever it's warm enough to get the suits out) when SHE has breasts (trust me on this; it won't be long now) and I have only one. So anyway I put the suit on last night, thinking as I did that maybe I should pose in a different suit that look better, since I still have my right breast, which was falling out of the suit top when I tried it on in the store changing room. Well when I put on the suit last night, it fit. The bikini top fit fine on both breasts. My right breast is no longer too large for the swimsuit.... how big WAS that tumor????
In fact it looked so good I felt sorry about getting rid of the breast. I suppose I could have a lumpectomy, but...... I want clean margins, and when you start out with a 7cm tumor, who knows if anything got left behind in the shrinkage? Nah, I will learn to be lopsided.
OKay I will leave off now -- perhaps I will have some real news tomorrow.
Tuesday, October 7, 2008
feeling yucchy BUT tumor shrinking
I think I'm just having trouble managing my palliative meds.... took the small dose of morphine that usually heralds a great next day (keeps me pain free for a lot longer than the 4 hrs it says) on an emptier stomach than I thought...... This morning I was too nauseated when I got vertical to help with the kids in the morning and poor ALan had to do it all.... and Matthew asked as he left how I was going to pick him up after debate this afternoon. (As if I'd have the patience to be sick all day!) Now the challenge has been getting enough food into me to get out and get at least a good dog walk in.
And then of course I didn't feel well because my blood sugar was down so low -- that's an OLD problem, but on top of new ones it's sometimes a bit hard to recognize. And then it's hard to eat when you feel bad from low blood sugar..... yeah I know that one; happens to emily every morning; that's why we have trouble feeding her breakfast.
On the other hand I finally figured out what my oncologist is feeling when she measures my tumor. See there's still this large mass -- but it's soft, and that's the fibrocyst which has been there for decades. But there's this hard thing on top of it jsut to the right of my nipple -- it's about the size of a kidney bean now -- well maybe not exactly; it's harder to find the edges sometimes than others. We will see how she measures it on Thursday and what she says about extending treatment a few weeks to disappear it.
While I would love to be done I would love a shot at a complete remission more.
Besides -- if there's a delay of 2-3 weeks, I'd get to be here for Halloween, and the chances that my in laws would make it to stay with the kdis while we go to the mayo would be increased..... and my chemo buddies will all still be there for the next 3 weeks......
OKay I'm going to walk this dog now..... we'll do the 4 mile loop. OUtside always makes me feel better.
And then of course I didn't feel well because my blood sugar was down so low -- that's an OLD problem, but on top of new ones it's sometimes a bit hard to recognize. And then it's hard to eat when you feel bad from low blood sugar..... yeah I know that one; happens to emily every morning; that's why we have trouble feeding her breakfast.
On the other hand I finally figured out what my oncologist is feeling when she measures my tumor. See there's still this large mass -- but it's soft, and that's the fibrocyst which has been there for decades. But there's this hard thing on top of it jsut to the right of my nipple -- it's about the size of a kidney bean now -- well maybe not exactly; it's harder to find the edges sometimes than others. We will see how she measures it on Thursday and what she says about extending treatment a few weeks to disappear it.
While I would love to be done I would love a shot at a complete remission more.
Besides -- if there's a delay of 2-3 weeks, I'd get to be here for Halloween, and the chances that my in laws would make it to stay with the kdis while we go to the mayo would be increased..... and my chemo buddies will all still be there for the next 3 weeks......
OKay I'm going to walk this dog now..... we'll do the 4 mile loop. OUtside always makes me feel better.
Friday, October 3, 2008
Last Chemo
This was the real party. We'd planned it. Nancy brought packaged goodies, BOnnie brought veggie platters and came in her pyjamas!!! Christine seems to have been in charge of getting most of the presents. (I didn't know they were going to get me presents!) though one was hand made by Nancy, and she clearly bought the halloween scarf, which Em insists I need to wear no my head on halloween, even if I am in Minnesota. I brought brownies -- barley malt/stevia sweetened, but intense chocolate. They liked them okay -- Joan loved them, and took some home. (Joan and I are food-simpatico.) Barb came too. We couldn't get her an official chemo chair by us, so she walked her pole in and sat in a guest chair. Actually I didn't spend any time in my chemo chair at all yesterday -- I pulled a guest chair over by Christine and Bonnie (who was scheduled for later and had to wait for a free chair -- really it's the poles for the chemo that matter, but there is one per chair or bed.) When Joan came she sat in a guest chair beside me.
I won't give a blow-by blow, but the time went so fast I was surprised when I was done, and not ready to leave. We kept including more people in the party.... Oh and I made peace with the one nurse I had had difficulties with, who was assigned to me one last time yesterday. I don't know, she's just gruff, but she knows her stuff. Maybe the gruff thing is partly a front, like Pat's. Joan got pictures of me with her -- and we finally got a picture of me with Joan!
Christine and Bonnie have 3 more weeks, and Nancy has 4. I will try to get back there on the 23rd when they have their party. Bonnie says it's going to be a pyjama party. She wore her pyjamas to chemo yesterday so I think she means it!
I won't give a blow-by blow, but the time went so fast I was surprised when I was done, and not ready to leave. We kept including more people in the party.... Oh and I made peace with the one nurse I had had difficulties with, who was assigned to me one last time yesterday. I don't know, she's just gruff, but she knows her stuff. Maybe the gruff thing is partly a front, like Pat's. Joan got pictures of me with her -- and we finally got a picture of me with Joan!
Christine and Bonnie have 3 more weeks, and Nancy has 4. I will try to get back there on the 23rd when they have their party. Bonnie says it's going to be a pyjama party. She wore her pyjamas to chemo yesterday so I think she means it!
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