I biked all week. It was just so nice out, i had to. And -- until Friday I didn't stop at just going to Georgetown and back. I will tell the biking/swimming story with the radiation/medical story mixed in. (I know it might be harder to read that way, but it's easier to write -- sorry!)
On Monday I did a late start radiation, got a bone scan, and biked home the long way -- the rest of the "Arlington Loop," which is this wonderful loop of almost continuous bikepath. There has always been a place down by Alexandria where the bikepaths disconnect and we've had to ride on roads -- but the path got finished, and MOnday was the first time I'd ridden it like that!
Starting on Tuesday my appointments have been at 8:50am. that takes arranging for me to get there, because I have to leave home at 8, but as long as Matthew makes his bus I should have almost a half hour to myself before I have to leave. (If he doesn't make his bus and I have to drive him I will have to keep going to G-town in the car. I will try to do this only when I choose.... like on a day that's rainy or something.....) Anyway on tuesday I saw the radiation onc after the radiation -- that's going to be the weekly plan, though I can arrange to see him on a different day if I have plans on a particular Tuesday.
Radiation took forever on both Monday and tuesday because they were getting it right. APparently for all the time they took on Monday the doc decided to try to change the angle to involve less of my lung. He said that 10% of my lung will be damaged, which should not be an issue as I am not a smoker. (I think it must be lucky for my heart that the cancer was in my right breast.)
ANyway between the long radiation time and the MD visit, it was 11 by the time I was done. I had put my pool stuff into my backpack, so I biked to the pool and swam -- only 2/3 of a mile because I had to make it to a 1pm PT appointment. Then I biked home. (I worked at fitting the pool in because sometimes i get kinks from the biking, and my knee complains a little, and swimming really fixes something about both of those things.)
On Wednesday I rode my nice bike to radiation and brought it into the building as I had prearranged. (BIke theft is big business around here, and I hear that no lock is unpickable....) Afterwards I met the Babes and rode the Loop with the group.
Thursday I rode the old bike again, and after radiation biked up to Maryland to see my oncologist.
By thursday afternoon I was kinda sore from all the biking (90 miles) so instead of signing up to lead a Babe ride on Friday I decided to swim. I biked to radiation and then HOME again for a change. Then I had a little rest (really little, like 20 mins. I was surprised that that was all I wanted.) I ate lunch, and went for a swim. I felt bad about driving to the pool, because it was the only day I'd used the car!!! BUT we were out of groceries, and if I biked to the pool I wouldn't be able to bring many home on the way back..... so, boring as it was, I had to bring the car and fit that one errand in.
And then Janet came! Just for the weekend, from Ithaca. Now what were the chances of that? She is helping with so many things...... cooking, kids.... all the things I'm too tired to do a good job of.
WHich reminds me..... I'm pleased and proud that I have been keeping up with the fitness throughout this treatment -- but there is something I have to say. People say I'm amazing and stuff, and it's not quite like that. I realized this weekend with Janet here to help cook and tend to the everyone's emotional needs (mine included) that the thing is..... it's not that I don't get tired, but where the tired shows up is not where you would think. I'd have to be really tired to give up biking and swimming and walking...... like I was the weekend after each dose of adriamycin/cytoxan. But figuring out meals/cooking and dealing with kid squabbles are the first things to go for me. Boy do I get too tired for those things.
Course to be honest I was often too tired for those things by the end of the week, before my diagnosis & treatment.... before I moved to DC.... but the last time I was as tired about meal preparation as I was towards the end of the chemo was I think when the kids were little and I was juggling them with the clinic job, by the end of the week.
So we will see if that happens again towards the end of radiation. I was pretty tired Thursday afternoon after all that biking...... The doc said tamoxifen will make me tired too -- but as Mom pointed out, I can't be tired for 5 years! So I wonder how that works -- do I get used to it, or do I just lower my standards for energy?
And does tamoxifen have side effects about taste buds? My taste was coming back but it's wierd again. I've tasted wonderful oranges for 2 days now, but something else is off. I can almost taste it when I'm not even eating......
I will check. Meanwhile, if you guys find anything out, do tell!
Meanwhile, Happy Valentines' day!!
Saturday, February 14, 2009
Monday, February 9, 2009
First radiation treatment
It was fine. They even gave me pretty much the appointment I need, given that I have to have the same time every day and some of them are biking days ..... though it is going to be a &%@#$!!! getting myself up and out in time to Georgetown at 8:50am every day!!!
They drew an outline on my chest marking the outside boundaries of where they were to radiate, in black marker. It looks like a great big continent outline. I thought, Cool, I'll have something cool to show the kids. The only thing is...... they never warned me it would come off on my clothes...... it's because I biked home -- I biked more than that actually -- and I sweated. I was wearing proper biking clothes.... I have this nice new new white gore-tex shirt that I got at the last Spokes Babes special...... It's cut nicely, and unzips at the belly for ventilation (or overindulgence, some of us joked.)
Well the marker got that and my new yellow sports bra. I have them in a bucket of cold water & salt..... I really hope it comes out! I will have to wash my chest off every time before I leave, if they are going to do that every time..... They knew I was biking. ONce again I have to wonder -- have they really NEVER had a biker before? That seems strange, especially given the daily thing, which means that you have to choose a radiation place that is at least somewhat convenient..... Maybe no one mentioned it before? All the bikers had the forethought I lacked and realized before they got on their bikes that they would sweat and the marker would come off on their clothes...? Well I will be sure to tell them -- so that the next biker gets warned.....as long as I remember!
There wasn't much choice about appointments, but luckily I got one for the time I needed. All they asked was "morning or afternoon?" I got 8:50. It will be brutal to get there that early all the time, but it ought to help me make bike rides...... And maybe after this week I will be able to offer Matthew rides to school on Tuesdays and Thursdays -- which will mean driving to Georgetown straight from his school. This week I have too many appointments (which I will bike to after radiation, so I'll need my bike there) and besides it's springlike weather this week. He seems to be interested in cooperating, though -- he's asked me to wake him a little earlier. COurse what I want is for him to start out by going to sleep earlier..... well it might happen..... I told him I'd be needing to get myself to sleep earlier, and that I'd miss our time together -- and he said he might go to sleep earlier too.
I know the path to h#@(( is paved with good intenions, but sometimes they are the start of something positive -- aren't they...? Maaaaybe?
They drew an outline on my chest marking the outside boundaries of where they were to radiate, in black marker. It looks like a great big continent outline. I thought, Cool, I'll have something cool to show the kids. The only thing is...... they never warned me it would come off on my clothes...... it's because I biked home -- I biked more than that actually -- and I sweated. I was wearing proper biking clothes.... I have this nice new new white gore-tex shirt that I got at the last Spokes Babes special...... It's cut nicely, and unzips at the belly for ventilation (or overindulgence, some of us joked.)
Well the marker got that and my new yellow sports bra. I have them in a bucket of cold water & salt..... I really hope it comes out! I will have to wash my chest off every time before I leave, if they are going to do that every time..... They knew I was biking. ONce again I have to wonder -- have they really NEVER had a biker before? That seems strange, especially given the daily thing, which means that you have to choose a radiation place that is at least somewhat convenient..... Maybe no one mentioned it before? All the bikers had the forethought I lacked and realized before they got on their bikes that they would sweat and the marker would come off on their clothes...? Well I will be sure to tell them -- so that the next biker gets warned.....as long as I remember!
There wasn't much choice about appointments, but luckily I got one for the time I needed. All they asked was "morning or afternoon?" I got 8:50. It will be brutal to get there that early all the time, but it ought to help me make bike rides...... And maybe after this week I will be able to offer Matthew rides to school on Tuesdays and Thursdays -- which will mean driving to Georgetown straight from his school. This week I have too many appointments (which I will bike to after radiation, so I'll need my bike there) and besides it's springlike weather this week. He seems to be interested in cooperating, though -- he's asked me to wake him a little earlier. COurse what I want is for him to start out by going to sleep earlier..... well it might happen..... I told him I'd be needing to get myself to sleep earlier, and that I'd miss our time together -- and he said he might go to sleep earlier too.
I know the path to h#@(( is paved with good intenions, but sometimes they are the start of something positive -- aren't they...? Maaaaybe?
Sunday, February 1, 2009
Transition time
Well next week is my last week before radiation..... I'm feeling well, energy's good (back on Thursday or Friday I'd say.) HOwever, lots of gas and bloating this time. Alan really thinks it's chemo related -- it ate the intestinal flora, is his theory. COurse I take acidophilus.... and eat yogurt, but I guess it is just going to take time.
Looks like no chemo vein burn though! I will have to make sure the nurses know that what they did last time worked. I think so many patients have ports (surgical openings up in their chests to receive chemo more directly) that they didn't realize...... I still have burn marks from the chemo 7.5 weeks ago and 4.5 weeks ago -- the earlier one is the worse of the two, and still uglier. However, from 1.5 weeks ago looks great, though it itches a little. Last time the nurse gave me saline "next to" the taxotere, which means at the same time. The line had a little divider, and a bag of saline went into one side and the bag of taxotere into the other. Two bags of saline accompanied the taxotere and then another extra bag dripped in after the whole thing was done. That was last time -- and that was what was needed. The time before that there was only the extra bag after, and the burn is maybe 1/3 the size of the burn from 7.5 weeks ago. Don't know why the first taxotere didn't leave a burn mark -- luck? Or maybe the first nurse did somehting -- I didn't know to worry about it then.
I bike back there tomorrow -- same building, but to see my eye doctor -- to make sure my pressures are still okay despite all the steroids. I want to get off of the xalatan (eye med I started to keep pressures controlled during steroids) but my eye doc wants to leave me on it because my pressures are so nice and low with it. It's tempting. I will keep using it through winter -- because I always get spikes in winter. (Maybe because I exercise less -- the weather makes biking iffy, and the days I don't bike I work out for just an hour..... which is fine, but not really comparable to a 3 hour bikeride.) Also I'm more tired in winter I think, and tend to do more caffeine. I noticed it this winter -- and this time I do have the chemo thing going on -- but I think a lot of it is actually seasonal and seems familiar.
I'm lucky the weather was warm today (broke 50) so the ice has mostly thawed -- so biking should work. It might rain..... I'll bring the hurricane jacket in case it does. OH and ALan's sunglasses if he remembers to find them for me. I have to get dilated -- and get this..... there used to be these great reversal drops I used to use after I got dilated, so I could get my pupils back to normal for the ride home and the afternoon/evening with the kids. WELL they stopped making them. They stopped making them because they make no money! I would buy my own bottle happily and bring it to dilation appointments...... but that option apparently doens't exist either. Now there's a failure of the free market/capitalist health care system..... Last time I got dilated the production had stopped already and my eye doctor had saved some -- but it was his last bottle..... that was a year ago. SO tomorrow will be my first time coming home without these drops. One more thing to worry about.
And after that -- I have to think what to do next. I have to say I'm getting bored. Probably it's because I couldn't bike last week...... but I'm starting to think it's time to start taking jobs again..... Let's hope that does it. I'd like to start working on doing some more challenging interpreting -- but do I have time....?
Looks like no chemo vein burn though! I will have to make sure the nurses know that what they did last time worked. I think so many patients have ports (surgical openings up in their chests to receive chemo more directly) that they didn't realize...... I still have burn marks from the chemo 7.5 weeks ago and 4.5 weeks ago -- the earlier one is the worse of the two, and still uglier. However, from 1.5 weeks ago looks great, though it itches a little. Last time the nurse gave me saline "next to" the taxotere, which means at the same time. The line had a little divider, and a bag of saline went into one side and the bag of taxotere into the other. Two bags of saline accompanied the taxotere and then another extra bag dripped in after the whole thing was done. That was last time -- and that was what was needed. The time before that there was only the extra bag after, and the burn is maybe 1/3 the size of the burn from 7.5 weeks ago. Don't know why the first taxotere didn't leave a burn mark -- luck? Or maybe the first nurse did somehting -- I didn't know to worry about it then.
I bike back there tomorrow -- same building, but to see my eye doctor -- to make sure my pressures are still okay despite all the steroids. I want to get off of the xalatan (eye med I started to keep pressures controlled during steroids) but my eye doc wants to leave me on it because my pressures are so nice and low with it. It's tempting. I will keep using it through winter -- because I always get spikes in winter. (Maybe because I exercise less -- the weather makes biking iffy, and the days I don't bike I work out for just an hour..... which is fine, but not really comparable to a 3 hour bikeride.) Also I'm more tired in winter I think, and tend to do more caffeine. I noticed it this winter -- and this time I do have the chemo thing going on -- but I think a lot of it is actually seasonal and seems familiar.
I'm lucky the weather was warm today (broke 50) so the ice has mostly thawed -- so biking should work. It might rain..... I'll bring the hurricane jacket in case it does. OH and ALan's sunglasses if he remembers to find them for me. I have to get dilated -- and get this..... there used to be these great reversal drops I used to use after I got dilated, so I could get my pupils back to normal for the ride home and the afternoon/evening with the kids. WELL they stopped making them. They stopped making them because they make no money! I would buy my own bottle happily and bring it to dilation appointments...... but that option apparently doens't exist either. Now there's a failure of the free market/capitalist health care system..... Last time I got dilated the production had stopped already and my eye doctor had saved some -- but it was his last bottle..... that was a year ago. SO tomorrow will be my first time coming home without these drops. One more thing to worry about.
And after that -- I have to think what to do next. I have to say I'm getting bored. Probably it's because I couldn't bike last week...... but I'm starting to think it's time to start taking jobs again..... Let's hope that does it. I'd like to start working on doing some more challenging interpreting -- but do I have time....?
Wednesday, January 28, 2009
Parabens & other Chemicals
This post is really by Alan, who hasn't posted in a loooong while. He sent me this info in an email, after I read some info Joan sent me about parabens and bought a pile of paraben-free soap, thinking I was home free....... Anyway I thought it worth sharing. At this point I'm looking at trying to avoid more cancer, prevent recurrences and metastases..... There's a lot of overlap with what everyone else is trying to do, though the intensity of the efforts you all might be willing to put out may vary. I find myself looking at a lot of these links with the eyes of a parent as well.... especially the stuff about girls going through puberty younger. (Did I mention that mine started growing breasts before my cancerous breast was removed? Did I also mention that she's only 11? Sigh.) Anyway here's Alan's email w/ the links.....
See http://www.breastcancerfund.org/site/pp.asp?c=kwKXLdPaE&b=1203361
You might in fact be even more interested in the Breast Cancer Fund report called State of the Evidence 2008: The Connection Between Breast Cancer and the Environment. See http://www.breastcancerfund.org/site/pp.asp?c=kwKXLdPaE&b=206137, it looks at all sorts of chemicals and other things.
Two cautions about the first item.
First - the data are not yet in that say there is a clear causative connection between parabens and breast cancer. You might want to cut them anyhow, as a precaution, but it's not a proven thing.
Second - I don't know why titanium dioxide is on this list. I can't find anything about that having any connection to breast cancer or any other kind of cancer (except a protective effect for skin cancer, of course).
See http://www.breastcancerfund.org/site/pp.asp?c=kwKXLdPaE&b=1203361
You might in fact be even more interested in the Breast Cancer Fund report called State of the Evidence 2008: The Connection Between Breast Cancer and the Environment. See http://www.breastcancerfund.org/site/pp.asp?c=kwKXLdPaE&b=206137, it looks at all sorts of chemicals and other things.
Two cautions about the first item.
First - the data are not yet in that say there is a clear causative connection between parabens and breast cancer. You might want to cut them anyhow, as a precaution, but it's not a proven thing.
Second - I don't know why titanium dioxide is on this list. I can't find anything about that having any connection to breast cancer or any other kind of cancer (except a protective effect for skin cancer, of course).
Friday, January 23, 2009
LAST chemo -- taxotere & carboplatin
Yesterday it was. Biked there & back, nothing new there. Weather was good this time. This was more than a fitness accomplishment….. I also arranged for a friend of Em's to keep her company after school since she didn’t want to be home alone. This wasn’t really a supervision issue; she’s 11 and responsible, and I think Pinky would go for any would-be intruders….. it's more about company. However, when I realized how late I was I was relieved that Rebecca was here with EMily. (She lives accross the street, too, and her mom and sisters were home -- so had anything been needed.....)
Matthew had gone to debate after school and then NOT to baseball conditioning. I had told him the night before that if he did that I would probably not be able to get him at that in-between time (4-4:30), only after both things (5:15 or later.) He had acknowledged, but I guess he hadn't been paying attention.... He took the late bus home but was pissed because he was the only one on it.
Anyway they were all home when I got here -- Em, Matthew, and Rebecca. Thank goodness. Pinky had peed on the floor and Em had cleaned it. I could see she had gotten a snack -- I hope Rebecca ate some too!
I was too tired to make dinner OR drive, and had ALan pick up takeout form Chipotle on his way home. Joan's suggestion -- good idea!
Oh yeah -- I was LATE at chemo because of the extra saline I had the nurse infuse in an effort to avoid another vein burn from the taxotere. The first one I got (Africa) 6 weeks ago is still pretty red, and sore to the touch. The 2nd one, (Puerto Rico) from 3 weeks ago, is much smaller, healing well, and a little itchy. I'd had the nurse give me an extra bag of saline after that one, on NYEve. THIS time I got saline WITH the taxotere -- 2 bags -- AND a bag at the end. We will see to what extent it made a difference. I can feel it's made a difference already -- no pain. However, the vein does look a bit bluer and more pronounced than before, so maybe there will still be a bit of a burn. However, all that extra saline cost me an hour -- it was after 5 by the time I got home.
Then today I went on a bikeride to McLean, with the babes -- it was the first day in a long time with temps predicted to break 50, so I had to! However, I had to detour to Chevy Chase MD halfway through it to get my neulasta shot. Last night I sat down at the computer to figure out a route starting from partway through the ride...... . This is not a ridiculously hard thing but it's time consuming and takes focus, and I was SO TIRED...... I sat down at the computer & opened up my email first (generally a bad habit) and right at the top was an email from Joan with a route! I felt like the shoemaker with the elves! Then today JOan actually left the ride early and rode it with me. She said she was worried about some spots on the map that Google had not let her represent properly..... She clearly knew this route already, or something close to it.
In the end I did I think 37 miles. (Hey at least I figured out what kind of battery my bike computer needs today! Any day now I will actually go and get one!) I'm tired. I made it home in time to get EM to the dentist, but she wasn't ready so we were late. They saw us anyway (phew!) Then I made dinner, though I was too tired. Alan came home and finished making it. I walked the dog twice today but neither time for very long...... no poop. (I will give her a sweet potato -- that should work by morning -- or later tonight if Alan takes her.) then I had to take Matthew to a party. Now I'm going to go have a bath and do my eyedrops and rest I hope..... until he calls for a pickup. This time next year maybe he will just take the car -- or if there is any interest in drink or anything in that vein by then we'll do the same as tonight; I'm not usually tired early when I'm not on chemo.... though, I don't know, maybe this day would tire me by now anyway!!
Matthew had gone to debate after school and then NOT to baseball conditioning. I had told him the night before that if he did that I would probably not be able to get him at that in-between time (4-4:30), only after both things (5:15 or later.) He had acknowledged, but I guess he hadn't been paying attention.... He took the late bus home but was pissed because he was the only one on it.
Anyway they were all home when I got here -- Em, Matthew, and Rebecca. Thank goodness. Pinky had peed on the floor and Em had cleaned it. I could see she had gotten a snack -- I hope Rebecca ate some too!
I was too tired to make dinner OR drive, and had ALan pick up takeout form Chipotle on his way home. Joan's suggestion -- good idea!
Oh yeah -- I was LATE at chemo because of the extra saline I had the nurse infuse in an effort to avoid another vein burn from the taxotere. The first one I got (Africa) 6 weeks ago is still pretty red, and sore to the touch. The 2nd one, (Puerto Rico) from 3 weeks ago, is much smaller, healing well, and a little itchy. I'd had the nurse give me an extra bag of saline after that one, on NYEve. THIS time I got saline WITH the taxotere -- 2 bags -- AND a bag at the end. We will see to what extent it made a difference. I can feel it's made a difference already -- no pain. However, the vein does look a bit bluer and more pronounced than before, so maybe there will still be a bit of a burn. However, all that extra saline cost me an hour -- it was after 5 by the time I got home.
Then today I went on a bikeride to McLean, with the babes -- it was the first day in a long time with temps predicted to break 50, so I had to! However, I had to detour to Chevy Chase MD halfway through it to get my neulasta shot. Last night I sat down at the computer to figure out a route starting from partway through the ride...... . This is not a ridiculously hard thing but it's time consuming and takes focus, and I was SO TIRED...... I sat down at the computer & opened up my email first (generally a bad habit) and right at the top was an email from Joan with a route! I felt like the shoemaker with the elves! Then today JOan actually left the ride early and rode it with me. She said she was worried about some spots on the map that Google had not let her represent properly..... She clearly knew this route already, or something close to it.
In the end I did I think 37 miles. (Hey at least I figured out what kind of battery my bike computer needs today! Any day now I will actually go and get one!) I'm tired. I made it home in time to get EM to the dentist, but she wasn't ready so we were late. They saw us anyway (phew!) Then I made dinner, though I was too tired. Alan came home and finished making it. I walked the dog twice today but neither time for very long...... no poop. (I will give her a sweet potato -- that should work by morning -- or later tonight if Alan takes her.) then I had to take Matthew to a party. Now I'm going to go have a bath and do my eyedrops and rest I hope..... until he calls for a pickup. This time next year maybe he will just take the car -- or if there is any interest in drink or anything in that vein by then we'll do the same as tonight; I'm not usually tired early when I'm not on chemo.... though, I don't know, maybe this day would tire me by now anyway!!
Wednesday, January 21, 2009
steroids -- and taste changes
Today I took steroids in preparation for my last dose of chemo (last of this series, and in my dreams the last I will ever need.... though I don't want to jinx myself on that score... especially as I would rather have more in the future, if I need them -- I would just rather not need them.) Anyhow I noticed a change -- in my base energy level I think, but I didn't really get it that that's what was going on til I took the steroids this morning and felt like my old self again rather than steroid buzzed in a bad way. It's chemo fatigue I guess, cumulative effect. I haven't been that tired -- of I would have figured it out before -- just kinda drag-assy and not as up for stuff as usual. How I have been feeling is how most people look like they feel most of the time. (Course it's possible that most people actually have great energy like I usually do and are just better at containing it. I mean they couldn't be a whole lot worse..... :-D However, this is not the sense I have gotten after 45 years of it.) Anyway I got it today when, after taking steroids, I felt like my old million dollar self. Previously I'd already felt pretty much like that and the steroids had put me over the top -- made me jittery and bossy and unable to sleep.
We have yet to see about THAT-- there might still be a sleep problem for all I know..... but I did take a naplet this am after I took the first steroid dose (4mg) -- which I would not even have attempted before, but as I was working on this theory I thought it worth a try. It was a short one, maybe a little under an hour. I did actually fall asleep, which surprised me, and I woke up rested -- which I haven't been doing after naps lately. Lately I wake so dead tired, worse than before the nap, that i have been avoding napping and drinking tea instead (caffeinated, usually green.) I think it's not just cumulative chemo effect -- I also am tired at this time of year more, and gain weight at this time of year (which I have, a little, now, too.) I think the weight is partly because I exercise less -- can't do long bikerides when it's really cold, and can't bike at all if it gets snowy and icy. I still work out for an hour at least 5 days a week, but when I bike it's longer -- like 3 hours, sometimes a good bit longer in the summer...... Now I'm riding between 30 and 40 miles at the longest, and that's standard for winter because once you sweat, your sweat gets cold and after that it's not so much fun anymore. In spring there will be rides over 50 miles. In summer there's usually a 60, an 80, and sometimes after that a century -- or one can be arranged. (I only had one summer where I did all of these, the one before the BC diagnosis. I meant to do it again, but...... Anyway I will do it next summer, unless rowing* interferes. I doubt I will let that happen though.)
Meanwhile, I will see how long the chemo fatigue lasts. I am thinking less than what I have heard about, because that's how it was before surgery, after the first two rounds of chemo. However, it might last longer than after taxol and before surgery, because there may be a cumulative effect including some leftovers from the first two rounds.
I have three weeks between tomorrow's last dose and the start of radiation. Well more like 2.5, because I agitated for sooner and the radiation onc said that would be okay. So Monday 2/9 I start rads. There will be scheduling issues and also insurance issues -- I have to find out if the "boost" the doc told me we might do at the end is cyberknife. If that's what it is, even one day of it will mean we have to cobra so we get radiation covered by the fabulous insurance Alan had with his last job (and we CObra'd for January) rather thay paying a percentage after a deductible, which is the deal with the new insurance. (I am pleased that I had the radiation planning appt -- the simulation -- last Thursday. Under the old insurance! A lot was done then.)
As for the scheduling issues -- Joan suggested I ask the biking Babes about starting rides later for a few weeks. Sometimes people like to do that in the winter anyway, so it is mainly the first 3 weeks in March I am really asking people to put themselves out. Rides usually start at 9:30, but some start later in winter to allow the sun to warm the day up a bit. (And during code red days in summer they often start at 8:30.) If rides started an hour later I could make my radiation appointments at 9 and make it every day without too much craziness -- or at least the craziness would all be after everyone had left. I will try that.
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*I'm joining a breast cancer survivor rowing group. (Upper arm workouts, finally -- yay!) Generally the only upper arm workouts I get are pushing the push mower and shoveling snow. Have had none of either of that for months now. NOt that I'm complaining about the lack of snow -- snow sucks here because they don't shovel it or put salt or sand down, so driving is very scary --as opposed to Boston/Cambridge/SOmerville, where they take such good care of it that I never gave it a thought except for parking issues, which are always an issue there anyway, so what's new about that? I had just started lifting hand weights when I saw a fitness oncologist -- who told me that I should stop, before surgery, and not start again. Apparently some of the lifting is bad after the loss of lymph nodes and can cause lymphadema (swelling in the arm, sometimes elephantine.) I will find out more about this when I see the lymphadema PT in early February. (Yeah that I would have gotten better reimbursed via the old plan -- but Mondays are the only day that works, and I want to leave next Monday & Tuesday mornings clear for napping. I can always do stuff if I'm feeling energetic -- but no appointments. (I might swim after napping.... it would be smart if I went early! MOre likely I will walk, with Pinky.)
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The other thing I wanted to report on is taste changes. It's interesting to see this become an issue this late in the game, but it's good too -- because I can see the light at the end of the tunnel even as I am going into it! However... oranges are really out; I should stop buying them and give up on tasting them for the season. Hope the kids & Alan eat the rest of the box I got. (They won't.) Or maybe we will get some orange loving visitors.... (anyone?) HOwever I have noticed now that a number of other foods don't taste right -- pasta, grapes, apples -- I think tart is a problem (or high vite-c foods) for me to taste. Avocadoes are starting to go.... What I mean by not tasting right is that I can partially taste them, but part of their taste has gone bland for me...... it's not like something different -- I might have a shot at talking myself into something different as some new exciting thing -- but this is just less. In the case of oranges it's too much less. Maybe in the case of all of them. Dates too, I noticed the other day - I had started buying fresh dates as the sweet thing to eat, since so much of the fruit I want to eat is untasteable. But they.... either they don't taste right either or I'm just done with them -- not sure.
The tasteless food list is not complete; there is enough food that has become tasteless that I have started making a list of foods that still taste right to me. Guavas, bread, chocolate. Maybe veggies and cheese. Salmon! (Luckily I still have some left from that big box of wonderful canned salmon!!) Guavas I usually don't buy many of because they are like $3-4.lb, being tropical fruits. But I will now. Bread I am not excited about unless it's from Great Harvest -- so I will try to get there next week. (Friday's ride doesn't go there.) CHocolate is pricey because it must be sugar free -- but I have some, and I can make brownies too. I still have barley malt (my sweetener of choice)... I have about a quarter of the last 10 lb brick that the powder I got the year we moved here turned into, because of the humidity. (It works -- but using it involves a hammer and screwdriver to chisel, and double boiling. I have to be motivated!) After that I don't know..... the Takoma Park coop guy said he would probably not be able to get me barley malt powder again. I will check. The other way to get it is from my old coop in Cambridge -- either I would have to time that order or see if a MA friend could pick it up for me and keep it til I come visit.
I think I can still taste PB&J okay. The India SPice Tea I've been drinking is starting to taste bland. I think I'm going to keep drinking it anyway -- or maybe earl grey decaf will work better. No more mate since the diagnosis -- Alan discovered it is linked to cancer in the indigenous populations in SOuth America that (who?) drink it all the time. Liver cancer I think it was -- but you know, who needs more cancer? Plus, I have discovered I have a family history of liver cancer. Distant -- exactly as distant as my history of breast cancer -- same grandma's other sister. So.... good idea to try not to trigger it, to the extent that I can see my way around that landmine....
Well wow -- those of you who got to the end of this get kudos! See what I mean about the steroid making me jsut like my hyper old self? Babbly! :-)
We have yet to see about THAT-- there might still be a sleep problem for all I know..... but I did take a naplet this am after I took the first steroid dose (4mg) -- which I would not even have attempted before, but as I was working on this theory I thought it worth a try. It was a short one, maybe a little under an hour. I did actually fall asleep, which surprised me, and I woke up rested -- which I haven't been doing after naps lately. Lately I wake so dead tired, worse than before the nap, that i have been avoding napping and drinking tea instead (caffeinated, usually green.) I think it's not just cumulative chemo effect -- I also am tired at this time of year more, and gain weight at this time of year (which I have, a little, now, too.) I think the weight is partly because I exercise less -- can't do long bikerides when it's really cold, and can't bike at all if it gets snowy and icy. I still work out for an hour at least 5 days a week, but when I bike it's longer -- like 3 hours, sometimes a good bit longer in the summer...... Now I'm riding between 30 and 40 miles at the longest, and that's standard for winter because once you sweat, your sweat gets cold and after that it's not so much fun anymore. In spring there will be rides over 50 miles. In summer there's usually a 60, an 80, and sometimes after that a century -- or one can be arranged. (I only had one summer where I did all of these, the one before the BC diagnosis. I meant to do it again, but...... Anyway I will do it next summer, unless rowing* interferes. I doubt I will let that happen though.)
Meanwhile, I will see how long the chemo fatigue lasts. I am thinking less than what I have heard about, because that's how it was before surgery, after the first two rounds of chemo. However, it might last longer than after taxol and before surgery, because there may be a cumulative effect including some leftovers from the first two rounds.
I have three weeks between tomorrow's last dose and the start of radiation. Well more like 2.5, because I agitated for sooner and the radiation onc said that would be okay. So Monday 2/9 I start rads. There will be scheduling issues and also insurance issues -- I have to find out if the "boost" the doc told me we might do at the end is cyberknife. If that's what it is, even one day of it will mean we have to cobra so we get radiation covered by the fabulous insurance Alan had with his last job (and we CObra'd for January) rather thay paying a percentage after a deductible, which is the deal with the new insurance. (I am pleased that I had the radiation planning appt -- the simulation -- last Thursday. Under the old insurance! A lot was done then.)
As for the scheduling issues -- Joan suggested I ask the biking Babes about starting rides later for a few weeks. Sometimes people like to do that in the winter anyway, so it is mainly the first 3 weeks in March I am really asking people to put themselves out. Rides usually start at 9:30, but some start later in winter to allow the sun to warm the day up a bit. (And during code red days in summer they often start at 8:30.) If rides started an hour later I could make my radiation appointments at 9 and make it every day without too much craziness -- or at least the craziness would all be after everyone had left. I will try that.
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*I'm joining a breast cancer survivor rowing group. (Upper arm workouts, finally -- yay!) Generally the only upper arm workouts I get are pushing the push mower and shoveling snow. Have had none of either of that for months now. NOt that I'm complaining about the lack of snow -- snow sucks here because they don't shovel it or put salt or sand down, so driving is very scary --as opposed to Boston/Cambridge/SOmerville, where they take such good care of it that I never gave it a thought except for parking issues, which are always an issue there anyway, so what's new about that? I had just started lifting hand weights when I saw a fitness oncologist -- who told me that I should stop, before surgery, and not start again. Apparently some of the lifting is bad after the loss of lymph nodes and can cause lymphadema (swelling in the arm, sometimes elephantine.) I will find out more about this when I see the lymphadema PT in early February. (Yeah that I would have gotten better reimbursed via the old plan -- but Mondays are the only day that works, and I want to leave next Monday & Tuesday mornings clear for napping. I can always do stuff if I'm feeling energetic -- but no appointments. (I might swim after napping.... it would be smart if I went early! MOre likely I will walk, with Pinky.)
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The other thing I wanted to report on is taste changes. It's interesting to see this become an issue this late in the game, but it's good too -- because I can see the light at the end of the tunnel even as I am going into it! However... oranges are really out; I should stop buying them and give up on tasting them for the season. Hope the kids & Alan eat the rest of the box I got. (They won't.) Or maybe we will get some orange loving visitors.... (anyone?) HOwever I have noticed now that a number of other foods don't taste right -- pasta, grapes, apples -- I think tart is a problem (or high vite-c foods) for me to taste. Avocadoes are starting to go.... What I mean by not tasting right is that I can partially taste them, but part of their taste has gone bland for me...... it's not like something different -- I might have a shot at talking myself into something different as some new exciting thing -- but this is just less. In the case of oranges it's too much less. Maybe in the case of all of them. Dates too, I noticed the other day - I had started buying fresh dates as the sweet thing to eat, since so much of the fruit I want to eat is untasteable. But they.... either they don't taste right either or I'm just done with them -- not sure.
The tasteless food list is not complete; there is enough food that has become tasteless that I have started making a list of foods that still taste right to me. Guavas, bread, chocolate. Maybe veggies and cheese. Salmon! (Luckily I still have some left from that big box of wonderful canned salmon!!) Guavas I usually don't buy many of because they are like $3-4.lb, being tropical fruits. But I will now. Bread I am not excited about unless it's from Great Harvest -- so I will try to get there next week. (Friday's ride doesn't go there.) CHocolate is pricey because it must be sugar free -- but I have some, and I can make brownies too. I still have barley malt (my sweetener of choice)... I have about a quarter of the last 10 lb brick that the powder I got the year we moved here turned into, because of the humidity. (It works -- but using it involves a hammer and screwdriver to chisel, and double boiling. I have to be motivated!) After that I don't know..... the Takoma Park coop guy said he would probably not be able to get me barley malt powder again. I will check. The other way to get it is from my old coop in Cambridge -- either I would have to time that order or see if a MA friend could pick it up for me and keep it til I come visit.
I think I can still taste PB&J okay. The India SPice Tea I've been drinking is starting to taste bland. I think I'm going to keep drinking it anyway -- or maybe earl grey decaf will work better. No more mate since the diagnosis -- Alan discovered it is linked to cancer in the indigenous populations in SOuth America that (who?) drink it all the time. Liver cancer I think it was -- but you know, who needs more cancer? Plus, I have discovered I have a family history of liver cancer. Distant -- exactly as distant as my history of breast cancer -- same grandma's other sister. So.... good idea to try not to trigger it, to the extent that I can see my way around that landmine....
Well wow -- those of you who got to the end of this get kudos! See what I mean about the steroid making me jsut like my hyper old self? Babbly! :-)
Tuesday, January 20, 2009
inauguration -- quick PS
I didn't take pictures.... but if I had I would have taken one of this:
There was a man just a few people over from me, a round faced black man with a winter coat and hood on, and when Obama was speaking he held a round faced toddler in an orange snowsuit up over his own head, and said "Can you see?" It was partucularly sweet because the man was no taller than me, and I knew he couldn't see himself, so he didn't actually know if the child could see -- but it was important to him that his little one had been bundled up and brought out and actually SEEN this historic event.
Alan worried about what I would wear if I were to go, so I put Em's vest on. It was tight so had to be underneath my jackets -- but it fit... just. Alan pointed out as he was going out the door with Em that it was a good thing I had just the one breast now..... and it's true, I would not have been able to zip that vest up last September -- and it kept my whole torso and back nice and warm!
There was a man just a few people over from me, a round faced black man with a winter coat and hood on, and when Obama was speaking he held a round faced toddler in an orange snowsuit up over his own head, and said "Can you see?" It was partucularly sweet because the man was no taller than me, and I knew he couldn't see himself, so he didn't actually know if the child could see -- but it was important to him that his little one had been bundled up and brought out and actually SEEN this historic event.
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The only other thing worth mentioning was that I gave Em my warm down vest this am when she left, and my "new" windbreaker (from freecycles -- but Em liked it at least in part because it was North Face.) She didn't want to wear her own nice white vest that she wears to school every day because it was tight on her layers...... and I was at that point not sure I was going.Alan worried about what I would wear if I were to go, so I put Em's vest on. It was tight so had to be underneath my jackets -- but it fit... just. Alan pointed out as he was going out the door with Em that it was a good thing I had just the one breast now..... and it's true, I would not have been able to zip that vest up last September -- and it kept my whole torso and back nice and warm!
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