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.
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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.
-------------- ------ -------------- ------ -------------- ------ -------------- ------ -------------- ------
*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.
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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!
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?
Monday, January 12, 2009
taste buds, chemo burns & health insurance changes
I'm eating an apple and I can taste it -- for the first time in a month or two! I've been making applesauce in order to eat apples up til now.... but the kind I like to make involves cranberries, and apparently when one lives this far from where they are grown they are not in stores after Christmas! (That is quite an adjustment for me..... in MA I swear I bought cranberries any time I wanted. Like cucumbers and tomatoes. ANytime. I had no idea I had to live in MA to do it!)
ANyway about the taste thing -- this particular apple I'm eating tonight is not the kind I usually favor, and I wonder.... I prefer tart apples -- gold rush and stamens have been favorites lately -- except that they haven't, since this round of chemo. So I've been buying whatever's in the 2nds bin at my favorite stand at Farmer's Market, since I'm just going to sauce them anyway. And I think I grabbed a non favorite this evening..... I wonder if it's only tart apples I can't taste enough that they are ruined for me. Hmmm.
Oranges are still bad -- though I had a day a couple of days ago when they were good! I thought it was over (Sat I think it was) but I haven't been able to taste an orange since. (What a waste!) Guavas are still good though. They're expensive, but I'm going to buy some anyway because I taste them really well, much better than all the other fruit.
My chemo burn (the Africa one) is fading nicely -- though it will be awhile still -- and I have a new one of course, on the other side of my arm and lower down, easier to hide. It's red and angry but still underneath. the good news is, it's much smaller than the last one. Like the top of my pinky, from the last joint to the tip. Sideways it's almost the shape of Puerto Rico, but a bit elongated. I'm glad I asked for that last bag of saline -- might have something to do with how much smaller this one is. (I almost skipped it because it was NYEve and I was the last patient there.....) Where will the last one be, I wonder? ONe more week and a few days.....
The other bit of news is, we're going to have to change health insurances. Not carriers; it's still Blue Cross -- but the plan is as different from the present one as night and day. Alan started a new job last week (did I mention that before?) and that's great -- though I can see he's still missing his old one; this is really a change of field, and he liked the prior one. He was good at it, too, but the funding disappeared --so what can you do? The big surprise is that the health insurance at his old job, which was a small non government organization without secure funding sources, was fabulous. It was JUST the insurance to have when you get diagnosed with cancer. They covered everything. (Well almost everything.) NOW suddenly we are going to have to deal with percentages and deductibles and any out of state care is going to cost lots more. (Thank goodness I've had my mastectomy already! This is just one more reason to never get a metastasis....... because I will want to go back to the Mayo if I do!) Moreover, we have to get the "standard" rather than the "basic" plan (which costs more for everything) in order to get my oncologists covered..... Now we have to figure out if it's worth it to cobra for radiation. At the moment we are on cobra for this month while he's getting his bearings and chosing the insurance......
HOwever -- I have once again defeated winter and gone out on a nice 37 mile bike ride despite the cold -- or maybe I should say because of the relative warmth. It's the only day this week that is going to get over 40. Turns out I can bike 40miles in 40° -- good to remember. I should write down what I wore, since it worked. ONly catch is, the dog still wants a walk even though I got my wiggles out -- so off I go to help her with hers!
ANyway about the taste thing -- this particular apple I'm eating tonight is not the kind I usually favor, and I wonder.... I prefer tart apples -- gold rush and stamens have been favorites lately -- except that they haven't, since this round of chemo. So I've been buying whatever's in the 2nds bin at my favorite stand at Farmer's Market, since I'm just going to sauce them anyway. And I think I grabbed a non favorite this evening..... I wonder if it's only tart apples I can't taste enough that they are ruined for me. Hmmm.
Oranges are still bad -- though I had a day a couple of days ago when they were good! I thought it was over (Sat I think it was) but I haven't been able to taste an orange since. (What a waste!) Guavas are still good though. They're expensive, but I'm going to buy some anyway because I taste them really well, much better than all the other fruit.
My chemo burn (the Africa one) is fading nicely -- though it will be awhile still -- and I have a new one of course, on the other side of my arm and lower down, easier to hide. It's red and angry but still underneath. the good news is, it's much smaller than the last one. Like the top of my pinky, from the last joint to the tip. Sideways it's almost the shape of Puerto Rico, but a bit elongated. I'm glad I asked for that last bag of saline -- might have something to do with how much smaller this one is. (I almost skipped it because it was NYEve and I was the last patient there.....) Where will the last one be, I wonder? ONe more week and a few days.....
The other bit of news is, we're going to have to change health insurances. Not carriers; it's still Blue Cross -- but the plan is as different from the present one as night and day. Alan started a new job last week (did I mention that before?) and that's great -- though I can see he's still missing his old one; this is really a change of field, and he liked the prior one. He was good at it, too, but the funding disappeared --so what can you do? The big surprise is that the health insurance at his old job, which was a small non government organization without secure funding sources, was fabulous. It was JUST the insurance to have when you get diagnosed with cancer. They covered everything. (Well almost everything.) NOW suddenly we are going to have to deal with percentages and deductibles and any out of state care is going to cost lots more. (Thank goodness I've had my mastectomy already! This is just one more reason to never get a metastasis....... because I will want to go back to the Mayo if I do!) Moreover, we have to get the "standard" rather than the "basic" plan (which costs more for everything) in order to get my oncologists covered..... Now we have to figure out if it's worth it to cobra for radiation. At the moment we are on cobra for this month while he's getting his bearings and chosing the insurance......
HOwever -- I have once again defeated winter and gone out on a nice 37 mile bike ride despite the cold -- or maybe I should say because of the relative warmth. It's the only day this week that is going to get over 40. Turns out I can bike 40miles in 40° -- good to remember. I should write down what I wore, since it worked. ONly catch is, the dog still wants a walk even though I got my wiggles out -- so off I go to help her with hers!
Thursday, January 8, 2009
Look, suddenly 3 posts in two days....
Can one or two of them count for Christmas week, when I dried up? :-D
I went on 2 bike rides today, totaling 34 miles, on fat tires. It wasn’t supposed to be that way……. First I did the Arlington loop with a newer slower biker; that’s why I started out with the old bike. However – she biked more slowly than I had expected, & it took almost 3 hours to finish the loop (18-19 miles) That's fine for a new rider -- I just didn't watch the time when I was a new rider and didn't realize, now, that the time would run short. Meanwhile, my ride, as enjoyable as it was, was more like a visit than a workout, and I was desperate to meet Joan for a more challenging ride so I could get my wiggles out..... I've been having trouble sleeping unassisted lately, and it's long past the steroids, and long past the fatigue, and time to get tired the way I usually do!
So -- by the time I got back to Bluemont it was 12:45, & I was late to meet Joan and didn’t want to waste any time going home to change bikes, put on padded liners, clip on sandals, and two more pairs of socks… and talk to my mom and get that look on from Pinky that says “another bikeride, instead of taking me for a walk, again?”
Gawd, what am I going to do when Mom leaves…. Tomorrow!? Never thought I’d see her strike up a friendship with a dog, but we had the backyard fenced in in the last month, and now when my mom goes out for a cigarette she takes Pinky with her. She calls Pinky her smoking companion. Pinky goes out and runs around, checks the compost for rodent activity…. pees…. I can get away with taking her out for way fewer walks if I have, uh, been out biking half the day now, and know that she’s been outside. (Know what's funny? I think one of the things Mom and Pinky bonded on is fear of dogs.....Pinky happens to be one herself, but she seems to be afraid of other dogs, not just protecting us, though that's important to her too. I wonder what happened to her in her first 3 years. Mom thinks she was put outside on her own a lot -- because when Mom takes her out she goes out first (Pinky I mean) and then looks back to make sure Mom's coming too......)
Anyway, back to this morning..... early afternoon, actually. I met Joan on fat tires and suddenly the shoe was on the other foot.... Even though Joan was on her hybrid I had to struggle to keep up with her. She didn't complain; I just empathized with her position all too well and made a mental note not to use my old bike with Joan apart from biking to appointments, when I have to, because I will need to lock it up.
And then I got hungry..... Well no -- first I came home from biking with Joan (just as Em was getting home), had a snack, picked up Matthew an hour or two later, got my blood test results (only a little abby-normal this time -- white count high normal as per neulasta, red a little low but not even as bad as during pregnancy, & platelets just below the low end of the normal range. (I think this is the platelet nadir time, so they should start coming back up. ) ANyhow after all but Alan were home we decided to do Chinese takeout for mom's last night here. We ordered it, and got it, came home just as Alan was arriving, and suddenly Mom and I were starving.
I ate like a pig. I feel like I'm about to give birth to a third child..... I was doing so well with eating little meals and now I really have no one to blame but myself for my present bloat, and probable ensuing gassiness....
Oh but on the bright side, guess what? I tasted it all -- every last bite. I may not be able to taste oranges, but no problem with CHinese food. (CHocolate either..... :-)
I went on 2 bike rides today, totaling 34 miles, on fat tires. It wasn’t supposed to be that way……. First I did the Arlington loop with a newer slower biker; that’s why I started out with the old bike. However – she biked more slowly than I had expected, & it took almost 3 hours to finish the loop (18-19 miles) That's fine for a new rider -- I just didn't watch the time when I was a new rider and didn't realize, now, that the time would run short. Meanwhile, my ride, as enjoyable as it was, was more like a visit than a workout, and I was desperate to meet Joan for a more challenging ride so I could get my wiggles out..... I've been having trouble sleeping unassisted lately, and it's long past the steroids, and long past the fatigue, and time to get tired the way I usually do!
So -- by the time I got back to Bluemont it was 12:45, & I was late to meet Joan and didn’t want to waste any time going home to change bikes, put on padded liners, clip on sandals, and two more pairs of socks… and talk to my mom and get that look on from Pinky that says “another bikeride, instead of taking me for a walk, again?”
Gawd, what am I going to do when Mom leaves…. Tomorrow!? Never thought I’d see her strike up a friendship with a dog, but we had the backyard fenced in in the last month, and now when my mom goes out for a cigarette she takes Pinky with her. She calls Pinky her smoking companion. Pinky goes out and runs around, checks the compost for rodent activity…. pees…. I can get away with taking her out for way fewer walks if I have, uh, been out biking half the day now, and know that she’s been outside. (Know what's funny? I think one of the things Mom and Pinky bonded on is fear of dogs.....Pinky happens to be one herself, but she seems to be afraid of other dogs, not just protecting us, though that's important to her too. I wonder what happened to her in her first 3 years. Mom thinks she was put outside on her own a lot -- because when Mom takes her out she goes out first (Pinky I mean) and then looks back to make sure Mom's coming too......)
Anyway, back to this morning..... early afternoon, actually. I met Joan on fat tires and suddenly the shoe was on the other foot.... Even though Joan was on her hybrid I had to struggle to keep up with her. She didn't complain; I just empathized with her position all too well and made a mental note not to use my old bike with Joan apart from biking to appointments, when I have to, because I will need to lock it up.
And then I got hungry..... Well no -- first I came home from biking with Joan (just as Em was getting home), had a snack, picked up Matthew an hour or two later, got my blood test results (only a little abby-normal this time -- white count high normal as per neulasta, red a little low but not even as bad as during pregnancy, & platelets just below the low end of the normal range. (I think this is the platelet nadir time, so they should start coming back up. ) ANyhow after all but Alan were home we decided to do Chinese takeout for mom's last night here. We ordered it, and got it, came home just as Alan was arriving, and suddenly Mom and I were starving.
I ate like a pig. I feel like I'm about to give birth to a third child..... I was doing so well with eating little meals and now I really have no one to blame but myself for my present bloat, and probable ensuing gassiness....
Oh but on the bright side, guess what? I tasted it all -- every last bite. I may not be able to taste oranges, but no problem with CHinese food. (CHocolate either..... :-)
Wednesday, January 7, 2009
Damaged Taste Buds
Taste. When I was on AC (early summer) it was water. Or maybe it was taxol (late summer.) or maybe both. Water tasted bad. I ate a watermelon every 2-3 days to stay hydrated. I was grateful, given the season, that it wasn't mangos.
However, this time it IS interfering with some of my favorite seasonal fruit -- naval oranges and apples. I've been making applesauce, which still works -- but I can't anymore, because the applesauce I like is made with cranberries and apricots, and suddenly there are no cranberries anywhere. I think they're seasonal here. I swear this was NOT a problem in Massachusetts. My mom says her stores (in MA) stop having them after Christmas, but I don't think mine when I was there (bigger stores) did. It does stand to reason that cranberries would be available longer closer to where they are grown...... ANyhow if anyone knows where to find them in VA now I'd love to know.
I wasn't SURE about the navel oranges til just today. I kept thinking that maybe I was getting tasteless oranges. They LOOKED like they should be really good, but sometimes it happens that they look good and they aren't. But I just wasn't getting ANY really good ones. SO they I shared my orange with Emily, who has a discerning tongue (otherwise known as picky.) She said it was a particularly good orange, so I knew I was in trouble...... Then this evening I shared an orange with my mom and the same thing happened...... I told her to eat it because it was wasted on me.
It actually feels like the taste buds down near the tip of my tongue (but not quite at it) are a bit burned or something. They aren't -- and i think after the last two dosesof chemo this happened and got better before the third one. SO maybe I will taste oranges again before inauguration. I hope I don't miss the whole season. Not that it matters compared to the bigger picture.......
However, this time it IS interfering with some of my favorite seasonal fruit -- naval oranges and apples. I've been making applesauce, which still works -- but I can't anymore, because the applesauce I like is made with cranberries and apricots, and suddenly there are no cranberries anywhere. I think they're seasonal here. I swear this was NOT a problem in Massachusetts. My mom says her stores (in MA) stop having them after Christmas, but I don't think mine when I was there (bigger stores) did. It does stand to reason that cranberries would be available longer closer to where they are grown...... ANyhow if anyone knows where to find them in VA now I'd love to know.
I wasn't SURE about the navel oranges til just today. I kept thinking that maybe I was getting tasteless oranges. They LOOKED like they should be really good, but sometimes it happens that they look good and they aren't. But I just wasn't getting ANY really good ones. SO they I shared my orange with Emily, who has a discerning tongue (otherwise known as picky.) She said it was a particularly good orange, so I knew I was in trouble...... Then this evening I shared an orange with my mom and the same thing happened...... I told her to eat it because it was wasted on me.
It actually feels like the taste buds down near the tip of my tongue (but not quite at it) are a bit burned or something. They aren't -- and i think after the last two dosesof chemo this happened and got better before the third one. SO maybe I will taste oranges again before inauguration. I hope I don't miss the whole season. Not that it matters compared to the bigger picture.......
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