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!!
Friday, January 23, 2009
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.
-------------- ------ -------------- ------ -------------- ------ -------------- ------ -------------- ------
*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.)
-------------- ------ -------------- ------ -------------- ------ -------------- ------ -------------- ------
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.
-------------- ------ -------------- ------ -------------- ------ -------------- ------ -------------- ------
*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.)
-------------- ------ -------------- ------ -------------- ------ -------------- ------ -------------- ------
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.
------- ------- ------- ------- ------- ------- ------- ------- ------- ------- -------
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!
Inauguration!
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?
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?
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