This was the real party. We'd planned it. Nancy brought packaged goodies, BOnnie brought veggie platters and came in her pyjamas!!! Christine seems to have been in charge of getting most of the presents. (I didn't know they were going to get me presents!) though one was hand made by Nancy, and she clearly bought the halloween scarf, which Em insists I need to wear no my head on halloween, even if I am in Minnesota. I brought brownies -- barley malt/stevia sweetened, but intense chocolate. They liked them okay -- Joan loved them, and took some home. (Joan and I are food-simpatico.) Barb came too. We couldn't get her an official chemo chair by us, so she walked her pole in and sat in a guest chair. Actually I didn't spend any time in my chemo chair at all yesterday -- I pulled a guest chair over by Christine and Bonnie (who was scheduled for later and had to wait for a free chair -- really it's the poles for the chemo that matter, but there is one per chair or bed.) When Joan came she sat in a guest chair beside me.
I won't give a blow-by blow, but the time went so fast I was surprised when I was done, and not ready to leave. We kept including more people in the party.... Oh and I made peace with the one nurse I had had difficulties with, who was assigned to me one last time yesterday. I don't know, she's just gruff, but she knows her stuff. Maybe the gruff thing is partly a front, like Pat's. Joan got pictures of me with her -- and we finally got a picture of me with Joan!
Christine and Bonnie have 3 more weeks, and Nancy has 4. I will try to get back there on the 23rd when they have their party. Bonnie says it's going to be a pyjama party. She wore her pyjamas to chemo yesterday so I think she means it!
Friday, October 3, 2008
Friday, September 26, 2008
Chemo Party!
It started in the waiting room. I signed in, went to the bathroom and changed out of my sweaty biking clothes into dry ones, sat down in the waiting room, and a woman sat down accross from me, took a look at my helmet, and said "YOu're the woman who bikes to chemo? My boyfriend told me about you." We talked about biking for awhile -- then her boyfriend sat down and joined the conversation. Then I got called, weighed, and told to choose any bed I wanted. (There are chairs, too -- but I find the beds more comfortable -- like having a slumber party in the daytime! Of course I have never managed to nap -- though I have meant to. I even brought earplugs yesterday.....and Honey we had a party! I guess it worked kinda like bringing an umbrella so it doesn't rain....)
Anyhow I got into the room with the beds and my friend Christine was there already with an empty bed next to her -- so I got into it. Nancy was next to her, who I don't know as well but have talked to a number of times. (Christine is almost my age, married with one son a year younger than Emily. Nancy is older and widowed and that's all I know.) Then BOnnie came in. Omigod, I thought I was irreverent.... but this woman was great. She was short and broad shouldered, but when she talked I thought of Vickie. We were talking about reconstruction, which is something I'm revisiting now, more because the time to decide about it is closing in on me than because I want it, I think. BOnnie had surgery and reconstruction before her chemo (which is an earlier stage thing), so had advice for me. She mentioned this surgeon I keep hearing about at Georgetown -- people love him. HER endorsement was funnier than most, though. She said "Oh yeah, definitely go see him. He's very non threatening. He's good. And I don't even like men!" (I guess that doesn't necessarily explain what I like about her. I think it's the unashamed way she presented her unusual opinion. I really like people with in-your-face attitudes, who are so clearly who they seem to be with no hidden agendas..... I like people who don't fit in, too, and who aren't worried about it.)
By the time Joan got there she couldn't find me! I saw her looking around lost and waved and called out "Hey Joan, over here!" ANyone would have thought we were at a peace rally or something, rather than having chemotherapy! (Joan told me later that she came in looking for color, and that's how she ended up over by Nancy's bed. I was in the middle of the commotion ... she was close!
The guy with the girlfriend who started talking with me in the waiting room took the next bed on my other side -- I had thought they'd join the party, but the nurse drew the curtain, and they left it drawn. His girlfriend came to say goodbye when they left, though. She visits from out of state for his chemo, so I think they wanted some quality time together -- and I don't know what kinds of meds he's getting; maybe they makes him sick.
WE (the breast cancer crowd) are all on taxol, which doesn't do anything while it's going in, usually -- and we get benadryl and decadron first, which is a little like drinking coffee after an evening of alcohol.... we're up and down at the same time!
Around the time that Joan came another woman came by, a social worker, who is involved with a group called SOS. I made up words for the acronym (sex on saturdays?) She said it stands for Survivors Offering Support. (She agreed that sex on saturdays is good, too Nancy wanted to know how she was expected to do that, since she's widowed....) I signed up to get a "bosom buddy" (har har har) who has already sent me an email -- so I will talk with her either tonight or, hmm, look at the time, maybe tomorrow instead. Denise, the social worker, said she thought she could find me a survivor who had had a mastectomy without reconstruction, since that's what I want to have -- so maybe she did! I mean, if it's going to look fake and taste fake and feel fake, how about if I just stick a sock in my bra? Or maybe an apple, if I'm going on a bikeride..... I never seem to have enough pockets for all the food I want to bring! (My father in law thinks I should try a sandwich. It would be a funny shape, it might squish.... I could deal with that if I LIKED sandwiches!) What I really want to figure out is how to get a watermelon in there..... I really like watermelons. I guess that would be a bit large, though, huh?
Next week is my last chemo. Can you believe it? JUST when it's getting to be fun! We will have a real party, Christine said, to celebrate. We will bring stuff to share. Maybe I will make something good to eat..... of course if I make what I can eat no one else will like it. Maybe I should just stick a big watermelon into my backpack. It would be cumbersome, but it would fit better there than in my bra! I wonder how long it would take me to bike the 6 miles to Georgetown with that kind of weight in my backpack.......
Anyhow I got into the room with the beds and my friend Christine was there already with an empty bed next to her -- so I got into it. Nancy was next to her, who I don't know as well but have talked to a number of times. (Christine is almost my age, married with one son a year younger than Emily. Nancy is older and widowed and that's all I know.) Then BOnnie came in. Omigod, I thought I was irreverent.... but this woman was great. She was short and broad shouldered, but when she talked I thought of Vickie. We were talking about reconstruction, which is something I'm revisiting now, more because the time to decide about it is closing in on me than because I want it, I think. BOnnie had surgery and reconstruction before her chemo (which is an earlier stage thing), so had advice for me. She mentioned this surgeon I keep hearing about at Georgetown -- people love him. HER endorsement was funnier than most, though. She said "Oh yeah, definitely go see him. He's very non threatening. He's good. And I don't even like men!" (I guess that doesn't necessarily explain what I like about her. I think it's the unashamed way she presented her unusual opinion. I really like people with in-your-face attitudes, who are so clearly who they seem to be with no hidden agendas..... I like people who don't fit in, too, and who aren't worried about it.)
By the time Joan got there she couldn't find me! I saw her looking around lost and waved and called out "Hey Joan, over here!" ANyone would have thought we were at a peace rally or something, rather than having chemotherapy! (Joan told me later that she came in looking for color, and that's how she ended up over by Nancy's bed. I was in the middle of the commotion ... she was close!
The guy with the girlfriend who started talking with me in the waiting room took the next bed on my other side -- I had thought they'd join the party, but the nurse drew the curtain, and they left it drawn. His girlfriend came to say goodbye when they left, though. She visits from out of state for his chemo, so I think they wanted some quality time together -- and I don't know what kinds of meds he's getting; maybe they makes him sick.
WE (the breast cancer crowd) are all on taxol, which doesn't do anything while it's going in, usually -- and we get benadryl and decadron first, which is a little like drinking coffee after an evening of alcohol.... we're up and down at the same time!
Around the time that Joan came another woman came by, a social worker, who is involved with a group called SOS. I made up words for the acronym (sex on saturdays?) She said it stands for Survivors Offering Support. (She agreed that sex on saturdays is good, too Nancy wanted to know how she was expected to do that, since she's widowed....) I signed up to get a "bosom buddy" (har har har) who has already sent me an email -- so I will talk with her either tonight or, hmm, look at the time, maybe tomorrow instead. Denise, the social worker, said she thought she could find me a survivor who had had a mastectomy without reconstruction, since that's what I want to have -- so maybe she did! I mean, if it's going to look fake and taste fake and feel fake, how about if I just stick a sock in my bra? Or maybe an apple, if I'm going on a bikeride..... I never seem to have enough pockets for all the food I want to bring! (My father in law thinks I should try a sandwich. It would be a funny shape, it might squish.... I could deal with that if I LIKED sandwiches!) What I really want to figure out is how to get a watermelon in there..... I really like watermelons. I guess that would be a bit large, though, huh?
Next week is my last chemo. Can you believe it? JUST when it's getting to be fun! We will have a real party, Christine said, to celebrate. We will bring stuff to share. Maybe I will make something good to eat..... of course if I make what I can eat no one else will like it. Maybe I should just stick a big watermelon into my backpack. It would be cumbersome, but it would fit better there than in my bra! I wonder how long it would take me to bike the 6 miles to Georgetown with that kind of weight in my backpack.......
Wednesday, September 24, 2008
...and then a Miracle Happened
Last weekend the aches were worse, and/or the advil and tylenol worked less well & for less long, especially on Sunday and Monday. Clearly on Monday I my daily maximum of advil and tylenol would have run out before I went to bed. Last Thursday my doctor wrote me a prescription for morphine in response to my concern about taking too much advil and tylenol in an effort to "get ahead of the pain" (take the meds at the first signs of pain rather than after it has set in) while their effects seem to be lasting for shorter periods of time. I had planned to hold onto this as a backup plan -- but on MOnday night I filled it and took one before going to bed.
I was afraid it would make me groggy and -- oh, sort of take me away from myself. The thing is, I want to function better, not worse, and I was thinking that a heavy duty narcotic would not exactly help with that. I think of morphine as a street drug and an end-of-life palliative. However, it did neither of these things; it just made the pain go away. It felt a little strange at the beginning, but not much. It didn't make me sleepy, either -- in fact I was so happy to be pain free that I stayed up reading for awhile, enjoying the feeling. The pain seemed to be starting to come back in the night and I took another one. (These are low dose every-4-hr pills, and it had been 5 hrs since my first one.) It was still 4 hours until my alarm would go off and I was no longer worried about being too groggy to function in the morning.
And then I woke up and felt fine. Well I was a little nauseous, which I had been warned about, but no pain. I did take advil at 7, and again before bed, and just now. But we are talking about a decrease from 1800mg advil plus 2g tylenol a day to just 1200 mg advil/day. Maybe I will try cutting it down to 800 -- since, after all, the only reason I am taking anything is to "get ahead of the pain," which doesn't seem to be coming at this point in such force as it was. I don't know if the morphine had something to do with it or whether for some reason it just hit me harder at the beginning of this chemo week, so there is less left of it now.
Anyway it has felt like a miracle. Last night I was thinking, gee, this is a pretty good life we have here, when I'm not going around aching all the time!
Having said that.... you're going to laugh at this, but I want to ask all you people sending me prayers and well wishes not to waste them on the aches and pains I'm having now. This will be over in a couple of weeks, the chemo and its associated pains. If I got to choose I'd want them all put all directly into my long term survival and all its indicators. A nicely shrunk tumor, as close to gone as possible by the time they take it out, and no more nodes -- or very few -- would be fabulous. No recurrences and metastases, and how about 40-50 more years of life?
I guess it's a tall order -- but nothing ventured, nothing gained, right?
And now I'm off to go lead a bikeride. 32 miles today, and I should come back with a loaf of bread and have my first reiki session!
Oh yeah -- of course I've had no bowel movements since the morphine. It was worth it, that one time, but .... I suppose this is why addicts inject it, hmmm? BTW my oncologist gave me morphine instead of codeine because it's supposed to be less constipating.
I was afraid it would make me groggy and -- oh, sort of take me away from myself. The thing is, I want to function better, not worse, and I was thinking that a heavy duty narcotic would not exactly help with that. I think of morphine as a street drug and an end-of-life palliative. However, it did neither of these things; it just made the pain go away. It felt a little strange at the beginning, but not much. It didn't make me sleepy, either -- in fact I was so happy to be pain free that I stayed up reading for awhile, enjoying the feeling. The pain seemed to be starting to come back in the night and I took another one. (These are low dose every-4-hr pills, and it had been 5 hrs since my first one.) It was still 4 hours until my alarm would go off and I was no longer worried about being too groggy to function in the morning.
And then I woke up and felt fine. Well I was a little nauseous, which I had been warned about, but no pain. I did take advil at 7, and again before bed, and just now. But we are talking about a decrease from 1800mg advil plus 2g tylenol a day to just 1200 mg advil/day. Maybe I will try cutting it down to 800 -- since, after all, the only reason I am taking anything is to "get ahead of the pain," which doesn't seem to be coming at this point in such force as it was. I don't know if the morphine had something to do with it or whether for some reason it just hit me harder at the beginning of this chemo week, so there is less left of it now.
Anyway it has felt like a miracle. Last night I was thinking, gee, this is a pretty good life we have here, when I'm not going around aching all the time!
Having said that.... you're going to laugh at this, but I want to ask all you people sending me prayers and well wishes not to waste them on the aches and pains I'm having now. This will be over in a couple of weeks, the chemo and its associated pains. If I got to choose I'd want them all put all directly into my long term survival and all its indicators. A nicely shrunk tumor, as close to gone as possible by the time they take it out, and no more nodes -- or very few -- would be fabulous. No recurrences and metastases, and how about 40-50 more years of life?
I guess it's a tall order -- but nothing ventured, nothing gained, right?
And now I'm off to go lead a bikeride. 32 miles today, and I should come back with a loaf of bread and have my first reiki session!
Oh yeah -- of course I've had no bowel movements since the morphine. It was worth it, that one time, but .... I suppose this is why addicts inject it, hmmm? BTW my oncologist gave me morphine instead of codeine because it's supposed to be less constipating.
Thursday, September 18, 2008
MD visit, detection lesson & chemo pictures
My doctor said the tumor has shrunk more, down to 1.8 cm. That's great news, except that it still feels the same to me, so I'm not sure really..... SHE isn't really sure what she's measuring anymore. (I always had trouble with it..... which is why I'm where I'm at now!!!) She said she feels the fibrocystic band underneath it.... course I could never tell them apart, before.
What follows is a little digression about how to maybe detect cancer, if it presents like mine, which is different enough that it's missable if you just do what most of us are told to do. (The mammogram didn't see it either, or the ultrasound.) Skip if you know already. SOme of it's probably even in an earlier post. It's all going to be purple.
The cancer was completely undistinguishable from the fibrocyst before my first chemo. However, for all you cancer free people, the thing that was noticeable was that it was larger. What I took to be the same old fibrocyst that has lived there for decades was a bit larger than it used to be. It was the larger fibrocyst anyway -- there is another one on the left side of the left breast, which is small -- and has always been smaller. Both were almost gone for some years after I had finished nursing the kids for 8 years. Then they started getting sore again, during the 2 weeks before my period. That seemed reasonable, so I didn't worry.
However, the right one seemed to be larger than it used to be. It was only larger during the PMS two weeks, though, and it was sore like a fibrocyst. I did check it, and did not worry about it for those reasons -- no one ever told me that cancer could hurt and be larger only sometimes, like a fibrocyst. It's hard to tell about size changes, nothing to compare it to since the other fibrocyst was smaller anyway .... but I did start sleeping with a small rag under that breast (I sleep face down) during those PMS weeks. Still, it seemed to be smaller again (nothing needed under it when I slept) for the 2 weeks starting with my period. The only other retrospective symptom that might be useful to all you guys is, Alan said that the right breast (cancerous) tasted stronger, at PMS time, than the OTHER breast. He didn't know that was anything to worry about either. So now you guys all know; learn from our ignorance!!
Anyway that was my doctor visit today -- smaller cancer, maybe. Hopefully. Still no more nodes that she can feel, but sometimes they are not palpable. I would love to have NO MORE NODES, though..... maybe if we all chant it or pray it or something.... and how about a nice 90% prognosis? (not likely, but so what?)
Also I have to figure out whether it's better to take tamoxifen for a few years (that starts after radiation) or just have my ovaries removed. Tamoxifen has some possible risks (can't remember whether it's endometrial cancer or ovarian or cervical -- I need to find out because those are very different.) However, it blocks the estrogen receptors, so that might be better than killing the ovaries, since there's estrogen in food too -- and even though I'm doing my best to avoid it I'm sure I get some. Course flax blocks them too..... My doctor wanted to table that discussion since tamoxifen is later -- but I would want the ovaries removed at the Mayo when I go for surgery if I'm having them removed, and that's soon. She is not sure they will do it at the same time, though, so I'll have to ask anyway.
She also said there is likely to be an issue with having a local doctor remove the drains the Mayo surgeon will leave in. I hadn't realized. The Mayo doctor said it would be simple to have a local doctor remove the drains. However, apparently doctors don't want to clean up other doctors' work. We will see what I can do about this...... I don't want to return to MN if I don't have to, 2 weeks later. (Unless maybe I get those free cancer miles.... I have to look into that.)
OKay, enough serious stuff. today Joan decided we needed pictures of me having chemo. SO she took some! I posted two. (Next time we will get someone to take a picture with HER in it TOO.) Thanks to Rebecca for the loan of the great scarf. I got compliments on it all day -- one woman at the cancer center (a worker, not a patient) said she wears wraps on her head sometimes just anyway -- probably every time she sees a patient with one she likes!.
What follows is a little digression about how to maybe detect cancer, if it presents like mine, which is different enough that it's missable if you just do what most of us are told to do. (The mammogram didn't see it either, or the ultrasound.) Skip if you know already. SOme of it's probably even in an earlier post. It's all going to be purple.
The cancer was completely undistinguishable from the fibrocyst before my first chemo. However, for all you cancer free people, the thing that was noticeable was that it was larger. What I took to be the same old fibrocyst that has lived there for decades was a bit larger than it used to be. It was the larger fibrocyst anyway -- there is another one on the left side of the left breast, which is small -- and has always been smaller. Both were almost gone for some years after I had finished nursing the kids for 8 years. Then they started getting sore again, during the 2 weeks before my period. That seemed reasonable, so I didn't worry.
However, the right one seemed to be larger than it used to be. It was only larger during the PMS two weeks, though, and it was sore like a fibrocyst. I did check it, and did not worry about it for those reasons -- no one ever told me that cancer could hurt and be larger only sometimes, like a fibrocyst. It's hard to tell about size changes, nothing to compare it to since the other fibrocyst was smaller anyway .... but I did start sleeping with a small rag under that breast (I sleep face down) during those PMS weeks. Still, it seemed to be smaller again (nothing needed under it when I slept) for the 2 weeks starting with my period. The only other retrospective symptom that might be useful to all you guys is, Alan said that the right breast (cancerous) tasted stronger, at PMS time, than the OTHER breast. He didn't know that was anything to worry about either. So now you guys all know; learn from our ignorance!!
Anyway that was my doctor visit today -- smaller cancer, maybe. Hopefully. Still no more nodes that she can feel, but sometimes they are not palpable. I would love to have NO MORE NODES, though..... maybe if we all chant it or pray it or something.... and how about a nice 90% prognosis? (not likely, but so what?)
Also I have to figure out whether it's better to take tamoxifen for a few years (that starts after radiation) or just have my ovaries removed. Tamoxifen has some possible risks (can't remember whether it's endometrial cancer or ovarian or cervical -- I need to find out because those are very different.) However, it blocks the estrogen receptors, so that might be better than killing the ovaries, since there's estrogen in food too -- and even though I'm doing my best to avoid it I'm sure I get some. Course flax blocks them too..... My doctor wanted to table that discussion since tamoxifen is later -- but I would want the ovaries removed at the Mayo when I go for surgery if I'm having them removed, and that's soon. She is not sure they will do it at the same time, though, so I'll have to ask anyway.
She also said there is likely to be an issue with having a local doctor remove the drains the Mayo surgeon will leave in. I hadn't realized. The Mayo doctor said it would be simple to have a local doctor remove the drains. However, apparently doctors don't want to clean up other doctors' work. We will see what I can do about this...... I don't want to return to MN if I don't have to, 2 weeks later. (Unless maybe I get those free cancer miles.... I have to look into that.)
OKay, enough serious stuff. today Joan decided we needed pictures of me having chemo. SO she took some! I posted two. (Next time we will get someone to take a picture with HER in it TOO.) Thanks to Rebecca for the loan of the great scarf. I got compliments on it all day -- one woman at the cancer center (a worker, not a patient) said she wears wraps on her head sometimes just anyway -- probably every time she sees a patient with one she likes!.
Wednesday, September 17, 2008
New Pictures
Finally I have new pictures to post, courtesy of Joan. I'm going to post the one that shows my dirty teeth too clearly right in this post, where it can scroll down and disappear as new posts appear...... See, my dentist wouldn't touch me with a ten foot pole once I'd started chemo, but no one told me to see the dentist first, and I didn't think of it..... ANyway never mind; I'm going to make an appt. to get all those stains removed the week after chemo and hope she will see me that soon after so I can smile at Steve and Liz's wedding. The other one will now be the first one seen at the top of the blog
Look, I have enough hair to have helmet head! See how the hair is kinda bumpy? It's not, usually -- just when I've just taken my helmet off. It's starting to stick out on the side a little in the morning, too -- which means it's long enough for bedhead!
I rode fast today, though the ride was short (25 miles.) I used to want to do a detour for more miles on the way back from Bethesda, because 25 was kinda short -- like only a few weeks ago. Now I think 25 is probably about right. (Makes me grumble -- I've never stopped, and usually if you keep going, biking 2-3 times a week, you get stronger! But nooooo.... that's chemo for you.) But never mind -- the light at the end of the chemo tunnel is quite bright at this point. Anyhow, today I rode fast, explaining that I was trying to keep my adrenaline up so my pain medicine would work better. (They all think I'm nuts, I'm sure.) I'm really happier being a whirling dervish, anyway -- and it really DOES seem to make the aches less. Plus, it's nice at home, too, for Alan. Well sometimes it's a little much for him, but at least I'm DOING stuff, so he doesn't have to do it all, which he was, last weekend, when I was trying to take less medication without speeding up my pace.
Now if only I could find a way to give Alan my quick bikeride to Bethesda. He told me last night that he's applied for a job just 3 miles north of Bethesda but that if he gets it the commute is going to be awful. It really is too bad he doesn't like to bike..... (I mean yeah, his bike died, but I can get him another one, not new but in good working condition.) However, he'd have to bike around 15 miles each way, to work. (Sounds wonderful to me. And he likes to save money!) The bikepaths really are the most direct route to Bethesda..... by any other route it would take a good 25 miles.... but biking it would be my thing, not his. Maybe he will get his license and take the car -- then the only problem would be what to do when the kids needed to be picked up, how to get the groceries... and I could only take jobs that were bikeable..... which would kill most of those last minute assignments.
Today Joan made a funny on the ride. I was talking about how my chemo was winding up, and how the surgery would be good because it's so concrete, and the healing from it will be finite and clear. She said, "The surgery is going to take something out of you." I said "I sure HOPE so; that's the idea!" She walked right into that one, didn't she....?
Tuesday, September 16, 2008
Adrenaline & Steroids -- & swimming!
I thought of something today. It seems to me that someone told me that steroids mimic the body's own adrenaline. (I don't remember where I heard that so who knows. If anyone knows anything about this, please do tell.....) So I was wondering whether adrenaline has actually been having a helpful effect on my body aches.
I went swimming today. I was late getting there (yes, story of my life -- a little worse these days but basically just the way I am) so I had to swim fast to try to get the mile in. Now that's a lot harder for me to do than it usually is, but the idea of not being able to finish my mile just because some lifeguard is going to blow the whistle for the end of the scheduled swim at 1:30 pisses me off enough that I put my arms into it harder anyway, chemo or no chemo.... (Actually, that is the only thing that ever motivates me to get my pace up -- also chemo or no chemo.... :-D)
The background to this is that
1) The high school pools around here are open to the public three times a day,
only one of which doesn't conflict with my life, and that lasts for 1.5 hrs -- and
2) Usually I swim a mile in 45-50 mins, but I have done it in 40 when I'm
under the gun.
Anyway.... two out of the last three times I went swimming I had to pick up the pace because I was late. Once I did the mile in 40 mins and got out energized despite the fact that it had been hard to swim fast. The next time I went early, swam it in 50 mins, and got out tired. Today I was really late, swam 8/9ths of a mile in maybe 35-37 mins, was pissed that I hadn't been able to do the whole thing but got out energized and had a nice afternoon with the kids. ANyway both times when I was rushed I got out energized, and I think my pain medication lasted longer and worked better. And so I was wondering whether it is possible that the adrenaline had an effect somewhat like the steroid..... Wouldn't that be cool? Maybe all I have to do is make myself believe that I'm in a crisis all the time.....
I'm lucky that this chemo happened at a time when I was diversifying my workouts. This is my first time in life doing that -- I used to do serial monogamy with the workouts, like a real stick-in-the-mud. But now it turns out that they don't all feel the same with chemo.
In the last week I've been tired riding my bike over...... I don't know, 25-30 miles? This is the first time that's happened since I've been riding with the Babes -- I guess it's happened intermittently during this past summer, but that was on adriamycin/cytoxan, and there was a rhythm to my energy in response to that. This is the first time it's happened since I've been on the low dose taxol, which means this is just the way it is til it's over. That's rough, and if it weren't for the swimming it would be depressing.
Even walking the dog.... usually even if I start tired I get into it after 20 mins, which is one reason to do the 4 mile loop -- but last time I did the 4 mile dog walk I was tired throughout, which sucked. But swimming.... swimming doesn't trigger the aches the same way; in fact, it fixes the sore shoulder I sometimes get from road biking, so i try to swim the day after i bike..... Sooooo I'm thinking it's a better exercise for me now.
I'm not going to stop walking and biking (one's good for the dog and the bone density, and the other makes me happy and brings me to my support group!) However, I may just make it my business to swim every other day and scale down the other stuff, for the next few weeks, anyway. (Except for biking for transportation -- that I will still do, and that is almost always under 25 miles anyway.) Actually there is another reason to focus on the swimming -- after surgery it will be the last of the three exercises i will be allowed to do -- and even when I'm allowed I won't be able to get my right arm up over my head for some time. (Think I will swim in a circle? The lifeguards won't like that.....)
Ugh. I get tired hearing me write about myself. (I guess you guys don't have to read it if you get tired of it.....) Here, I have some news about NOT me, for a change. Today is Matthew's 15th birthday! Can you believe it? He's tall now..... a year ago he claimed that the only height advantage I had was due to my hair. Now not only do I have no hair but he's so much taller I would have needed a beehive from the 50s to compete! We got him a cake. Tried to take him out to dinner but it wasn't a good night for him, so we'll do it on the weekend.
I went swimming today. I was late getting there (yes, story of my life -- a little worse these days but basically just the way I am) so I had to swim fast to try to get the mile in. Now that's a lot harder for me to do than it usually is, but the idea of not being able to finish my mile just because some lifeguard is going to blow the whistle for the end of the scheduled swim at 1:30 pisses me off enough that I put my arms into it harder anyway, chemo or no chemo.... (Actually, that is the only thing that ever motivates me to get my pace up -- also chemo or no chemo.... :-D)
The background to this is that
1) The high school pools around here are open to the public three times a day,
only one of which doesn't conflict with my life, and that lasts for 1.5 hrs -- and
2) Usually I swim a mile in 45-50 mins, but I have done it in 40 when I'm
under the gun.
Anyway.... two out of the last three times I went swimming I had to pick up the pace because I was late. Once I did the mile in 40 mins and got out energized despite the fact that it had been hard to swim fast. The next time I went early, swam it in 50 mins, and got out tired. Today I was really late, swam 8/9ths of a mile in maybe 35-37 mins, was pissed that I hadn't been able to do the whole thing but got out energized and had a nice afternoon with the kids. ANyway both times when I was rushed I got out energized, and I think my pain medication lasted longer and worked better. And so I was wondering whether it is possible that the adrenaline had an effect somewhat like the steroid..... Wouldn't that be cool? Maybe all I have to do is make myself believe that I'm in a crisis all the time.....
I'm lucky that this chemo happened at a time when I was diversifying my workouts. This is my first time in life doing that -- I used to do serial monogamy with the workouts, like a real stick-in-the-mud. But now it turns out that they don't all feel the same with chemo.
In the last week I've been tired riding my bike over...... I don't know, 25-30 miles? This is the first time that's happened since I've been riding with the Babes -- I guess it's happened intermittently during this past summer, but that was on adriamycin/cytoxan, and there was a rhythm to my energy in response to that. This is the first time it's happened since I've been on the low dose taxol, which means this is just the way it is til it's over. That's rough, and if it weren't for the swimming it would be depressing.
Even walking the dog.... usually even if I start tired I get into it after 20 mins, which is one reason to do the 4 mile loop -- but last time I did the 4 mile dog walk I was tired throughout, which sucked. But swimming.... swimming doesn't trigger the aches the same way; in fact, it fixes the sore shoulder I sometimes get from road biking, so i try to swim the day after i bike..... Sooooo I'm thinking it's a better exercise for me now.
I'm not going to stop walking and biking (one's good for the dog and the bone density, and the other makes me happy and brings me to my support group!) However, I may just make it my business to swim every other day and scale down the other stuff, for the next few weeks, anyway. (Except for biking for transportation -- that I will still do, and that is almost always under 25 miles anyway.) Actually there is another reason to focus on the swimming -- after surgery it will be the last of the three exercises i will be allowed to do -- and even when I'm allowed I won't be able to get my right arm up over my head for some time. (Think I will swim in a circle? The lifeguards won't like that.....)
Ugh. I get tired hearing me write about myself. (I guess you guys don't have to read it if you get tired of it.....) Here, I have some news about NOT me, for a change. Today is Matthew's 15th birthday! Can you believe it? He's tall now..... a year ago he claimed that the only height advantage I had was due to my hair. Now not only do I have no hair but he's so much taller I would have needed a beehive from the 50s to compete! We got him a cake. Tried to take him out to dinner but it wasn't a good night for him, so we'll do it on the weekend.
Monday, September 15, 2008
tired and cranky
I'm tired a lot now, and thirsty. I've been buying the next watermelon before i finish the one I'm on, just to make sure I don't run out. (The last one was even a seeded one, which are hard to find these days! It said it was seedless, but the markings on the outside looked like those of a seeded, so I thought maybe.) Also, I'm also getting shorter pain free windows from the advil and tylenol, and finding that trying to tough it out in between makes it much worse.
For example yesterday the 3 advils I took at 12:30 (which should have lasted 8 hours) started wearing off at 5:30. However, I waited, and didn't take tylenol until 6:15 -- and what ended up happening was that the tylenol never really worked that well at all, so I just felt more or less sick until I took advil before going to sleep, meaning it to last the night. (On the other hand, that was at 11:30pm, and the next tylenol I took, at 5am, DID work for the morning. Maybe it works a bit longer when I'm asleep.....)
I'm concerned about this because I'm only halfway through the time when I'm needing these medications -- it started about 3 weeks ago and I have 3 weeks left....assuming that the last chemo only makes me sick for a week, which I don't really know. I'm worried about the effect of all these drugs on my liver and kidneys and who knows if they are more susceptible to metastases if they are further taxed......?
The other news is, our Mac is sick. We only have a computer and a half, if you ask me -- this toshiba laptop being the half. I don't like it as much, and I don't have much access to it when the kids are home because Matthew tends to move into it. Plus, to be fair -- one laptop for a family of FOUR!? Alan should get first dibs, anyway, because he's job hunting.
Oh yeah that's the other bit of news. Alan's job funding runs out right around when I'm due to have surgery -- so he's less and less available as I am needing him more. That really sucks. I asked him to check out some stuff about the herbs he got me info on early on in treatment.... I have new questions, because I'm at a different point. (Plus it's important to check for new info...) He said I should research it myself..... but see, I really wanted it to be done by a skeptical scientist who would have a feel for what's real and what's crap. I could lose my day trying to figure that out........
I mean I understand that he's stretched and stressed, but I was really hoping to have his support at this time, which still feels to me like the prime time to be getting all the preventive stuff in..... Efforts won't work as well later if there are metastases that could somehow have been prevented.... which is what I'm after, preventing them now. (My understanding of how it is with metastases is that no matter how hard people work they are only just staying ahead of them for as long as possible -- and most people eventually run out of steam and they catch up..... Of course I would try not to be most people even then, but I would so much rather not go there!)
It's not just that ALan doesn't have time. Even more than that is the stress and negativity he brings home all the time now, which I feel is bad for me to live with and take in.. it's especially striking when I come back from a meditation workshop or something ... Of course at the same time I understand the mounting stress as we get closer to a surgery that we will have to pay for CObra to pay for..... I'm not helping on the $ front, either. My earnings, small as they were, have stopped for the moment. I just don't know that i want to schedule jobs in when I'm juggling fatigue and pain meds and might wake up one day and decide I want a nap instead of a job -- especially given that it is for only a short time now.
For example yesterday the 3 advils I took at 12:30 (which should have lasted 8 hours) started wearing off at 5:30. However, I waited, and didn't take tylenol until 6:15 -- and what ended up happening was that the tylenol never really worked that well at all, so I just felt more or less sick until I took advil before going to sleep, meaning it to last the night. (On the other hand, that was at 11:30pm, and the next tylenol I took, at 5am, DID work for the morning. Maybe it works a bit longer when I'm asleep.....)
I'm concerned about this because I'm only halfway through the time when I'm needing these medications -- it started about 3 weeks ago and I have 3 weeks left....assuming that the last chemo only makes me sick for a week, which I don't really know. I'm worried about the effect of all these drugs on my liver and kidneys and who knows if they are more susceptible to metastases if they are further taxed......?
The other news is, our Mac is sick. We only have a computer and a half, if you ask me -- this toshiba laptop being the half. I don't like it as much, and I don't have much access to it when the kids are home because Matthew tends to move into it. Plus, to be fair -- one laptop for a family of FOUR!? Alan should get first dibs, anyway, because he's job hunting.
Oh yeah that's the other bit of news. Alan's job funding runs out right around when I'm due to have surgery -- so he's less and less available as I am needing him more. That really sucks. I asked him to check out some stuff about the herbs he got me info on early on in treatment.... I have new questions, because I'm at a different point. (Plus it's important to check for new info...) He said I should research it myself..... but see, I really wanted it to be done by a skeptical scientist who would have a feel for what's real and what's crap. I could lose my day trying to figure that out........
I mean I understand that he's stretched and stressed, but I was really hoping to have his support at this time, which still feels to me like the prime time to be getting all the preventive stuff in..... Efforts won't work as well later if there are metastases that could somehow have been prevented.... which is what I'm after, preventing them now. (My understanding of how it is with metastases is that no matter how hard people work they are only just staying ahead of them for as long as possible -- and most people eventually run out of steam and they catch up..... Of course I would try not to be most people even then, but I would so much rather not go there!)
It's not just that ALan doesn't have time. Even more than that is the stress and negativity he brings home all the time now, which I feel is bad for me to live with and take in.. it's especially striking when I come back from a meditation workshop or something ... Of course at the same time I understand the mounting stress as we get closer to a surgery that we will have to pay for CObra to pay for..... I'm not helping on the $ front, either. My earnings, small as they were, have stopped for the moment. I just don't know that i want to schedule jobs in when I'm juggling fatigue and pain meds and might wake up one day and decide I want a nap instead of a job -- especially given that it is for only a short time now.
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