The cancer centre hasn't called with my appointment times yet for the bloodwork or bone scan. I called this afternoon and tried to find out what was going on, but all they said was that it can take a couple of days to get a bone scan appointment. I hope that they will have my appointment times tomorrow.
I had to pick someone up from the airport today but the flight was late, so I had a bit of a chance to wander around. Toronto Pearson airport has some very nice artwork. There's a gallery on the mezzanine level, even. The last time I was there the display was all about the development of the telephone. Today, they had Contemporary Art from Toronto artists. The pieces were so beautiful.
One artist, Gillian Batcher, had taken silver wire and woven it into little balls of wire (using knitting and crocheting to close it, I think). I looked and looked and looked and I'm pretty sure that the original weave is lino weave. I was really impressed with myself for recognizing and remembering that weave! There were other artists that used greeting cards as a medium for fine art; in this way, beautiful pieces of art can be available to everyone at a reasonable cost.
So many of the artists had studied things like metalwork or glassblowing or wirework or textiles or whatever in colleges in Toronto. When I realized that it was possible to study all of these techniques - even to do a master's in some of them - I was struck with a fierce longing to go and do the same time. I would love so much to be able to study these things. My heart is in crafts and textiles, and I want to go and fully immerse myself in that. I'm pretty sure it's impossible to do this while on LTD. :(
Speaking of LTD, my insurance company called today to update their records. I don't fully understand; I'm signed off until September 2008 at present. I don't completely get why they need to call me every three months and find out how I'm doing?
Thursday, May 31, 2007
Wednesday, May 30, 2007
Called the oncologist
Oh my gosh it's hot here. I'm swollen from the heat - ick. I had rested my elbow on my leg above the knee for 15 or 20 minutes, and there is STILL a depression where my elbow was, 1 1/2 hours later. Oh the joys of living in Southern Ontario.
So I called my oncologist's office today and talked to two of the nurses. Both were named Linda. Ok, that last bit isn't relevant, but it is funny :)
Anyways, they kept asking if I'd had radiation, which got me worried because I don't want to just have radiation - I want to know why my pain is increasing. It ended up that the oncologist decided that we would do bloodwork (which probably means checking my tumour markers), a bone scan, and a referral to a radiation oncologist.
Radiating my sternum is tricky because one of the lesions on my sternum (there are two; one on the left and one on the right - the pain is coming from both of them) is in the radiation field from when I had breast cancer the first time back in 2000. I hope that both lesions can be irradiated, though, because that would make the pain go away. Or at least reduce it.
I'm sure some of you are wondering what could be causing the pain to increase, and what we can tell from the tests. If you don't want to know, stop reading here :)
So. Here are the possibilities:
1. The cancer cells are dying and giving off a last gasp of pain - shown if the tumour markers went down or stayed the same and the bone scan both shows no new bone mets and that the bone mets in my sternum have shrunk.
2. I broke my sternum - like the above, but the bone scan might show extra activity in the sternum. An xray would be needed to confirm this. This is a very unlikely outcome.
3. My sternal mets have progressed (with or without other bone progression) - shows if the tumour markers go up and the bone scan shows bigger/new spots. If there is other bone progression, my current treatment (Femara) has failed and I will probably start a new hormonal.
4. Sternal mets have progressed a little bit or not at all and there is organ involvement - shows if the tumour markers have gone up quite a bit but the bone scan doesn't show much in the way of spots. Additional scans would be needed to confirm this. This is not a likely outcome, either. If this does happen, Femara has failed and I will most likely start chemo.
Realistically, we're probably looking at either the cancer is dying and giving me pain (which means that radiation will do the trick), or the Femara isn't working to control my sternal mets. I don't know what would happen if there were no other bone mets or organ involvement; I'm not sure whether they would start me on a new treatment or not. Apparently people get an average of 9 months on Femara, and I've been on it 7 months now so it wouldn't be surprising if it no longer worked. We call this scenario "treatment failure".
I'm not going to think about what it means for a treatment to stop working.... it's a little scary, really. I know that I will need to get used to this (or at least learn to accept it), because treatment failures are the way things will go. Right now, I have lots and lots of treatments they could do next. Treatment failure is a lot harder to think about when there are no treatments left.
So I called my oncologist's office today and talked to two of the nurses. Both were named Linda. Ok, that last bit isn't relevant, but it is funny :)
Anyways, they kept asking if I'd had radiation, which got me worried because I don't want to just have radiation - I want to know why my pain is increasing. It ended up that the oncologist decided that we would do bloodwork (which probably means checking my tumour markers), a bone scan, and a referral to a radiation oncologist.
Radiating my sternum is tricky because one of the lesions on my sternum (there are two; one on the left and one on the right - the pain is coming from both of them) is in the radiation field from when I had breast cancer the first time back in 2000. I hope that both lesions can be irradiated, though, because that would make the pain go away. Or at least reduce it.
I'm sure some of you are wondering what could be causing the pain to increase, and what we can tell from the tests. If you don't want to know, stop reading here :)
So. Here are the possibilities:
1. The cancer cells are dying and giving off a last gasp of pain - shown if the tumour markers went down or stayed the same and the bone scan both shows no new bone mets and that the bone mets in my sternum have shrunk.
2. I broke my sternum - like the above, but the bone scan might show extra activity in the sternum. An xray would be needed to confirm this. This is a very unlikely outcome.
3. My sternal mets have progressed (with or without other bone progression) - shows if the tumour markers go up and the bone scan shows bigger/new spots. If there is other bone progression, my current treatment (Femara) has failed and I will probably start a new hormonal.
4. Sternal mets have progressed a little bit or not at all and there is organ involvement - shows if the tumour markers have gone up quite a bit but the bone scan doesn't show much in the way of spots. Additional scans would be needed to confirm this. This is not a likely outcome, either. If this does happen, Femara has failed and I will most likely start chemo.
Realistically, we're probably looking at either the cancer is dying and giving me pain (which means that radiation will do the trick), or the Femara isn't working to control my sternal mets. I don't know what would happen if there were no other bone mets or organ involvement; I'm not sure whether they would start me on a new treatment or not. Apparently people get an average of 9 months on Femara, and I've been on it 7 months now so it wouldn't be surprising if it no longer worked. We call this scenario "treatment failure".
I'm not going to think about what it means for a treatment to stop working.... it's a little scary, really. I know that I will need to get used to this (or at least learn to accept it), because treatment failures are the way things will go. Right now, I have lots and lots of treatments they could do next. Treatment failure is a lot harder to think about when there are no treatments left.
Tuesday, May 29, 2007
A lazy day
I didn't call the oncologist today because we were in Mississauga for the day. I'll call tomorrow, though. All I really expect is that they'll do the tumour markers. I just want the pain to go away; it's been bad again today, and I'm getting tired of taking percocet and feeling gritty and fuzzy-headed.
I didn't feel the creative urge to make stuff today, so I didn't get a lot done. I'm afraid that I won't have 120 pieces for the show :) I have about 80 pieces right now, though, so there's no reason to think that I won't have about 100 pieces for the show. That should be enough, I hope :)
Tomorrow they're going to be cutting off power to our neighbourhood for some number of hours between 9am-1pm. That is not exactly what I had in mind for tomorrow - sigh. I'll have to get up early to get coffee made, and I hadn't really wanted to be up early. I'm quite tired.
I didn't feel the creative urge to make stuff today, so I didn't get a lot done. I'm afraid that I won't have 120 pieces for the show :) I have about 80 pieces right now, though, so there's no reason to think that I won't have about 100 pieces for the show. That should be enough, I hope :)
Tomorrow they're going to be cutting off power to our neighbourhood for some number of hours between 9am-1pm. That is not exactly what I had in mind for tomorrow - sigh. I'll have to get up early to get coffee made, and I hadn't really wanted to be up early. I'm quite tired.
Monday, May 28, 2007
Quite a day
Ok, the pain is back. Sigh. I am a little tired of being in pain, I'll tell you. I was talking to the person at Well-fit, and she strongly urged me to talk to my oncologist since the pain is still spiking even after increasing my Oxycodone usage by 80mg/day (from 280mg to 360mg). I wish the pain would just go away... I don't want to have to involve my oncologist.
However, the guideline for calling the oncologist about something is that the "something" has to be going on for at least two weeks. The pain has been there for over two weeks and it's still bad. There's a gut feeling thing here, too; I do feel like I need to talk to the oncologist, although I feel a little stupid about it. I'm hoping the pain is just a result of cell death or something.
I had lunch with my former team at work because two people are leaving the team. A new person has been hired; he doesn't know what he's in for, and he seems like a pretty strong person. I expect him to be frustrated soon enough. I will miss the person who's leaving the company; he was a real asset to the team and to the company. Our manager didn't see it, though, and cancelled the projects this fellow was working on. I've no idea why this happened, but it's a typical thing for my manager to have done.
There are a lot of problems on that team, and they pretty much all stem from the manager and his lack of leadership. Don't get me wrong; he's a nice guy and very caring about his employees situations, but he lacks leadership skills. My manager's boss is also to blame for this mess; he's ignored the signs so far and hasn't investigated what's going on. I hope that things change there.
However, the guideline for calling the oncologist about something is that the "something" has to be going on for at least two weeks. The pain has been there for over two weeks and it's still bad. There's a gut feeling thing here, too; I do feel like I need to talk to the oncologist, although I feel a little stupid about it. I'm hoping the pain is just a result of cell death or something.
I had lunch with my former team at work because two people are leaving the team. A new person has been hired; he doesn't know what he's in for, and he seems like a pretty strong person. I expect him to be frustrated soon enough. I will miss the person who's leaving the company; he was a real asset to the team and to the company. Our manager didn't see it, though, and cancelled the projects this fellow was working on. I've no idea why this happened, but it's a typical thing for my manager to have done.
There are a lot of problems on that team, and they pretty much all stem from the manager and his lack of leadership. Don't get me wrong; he's a nice guy and very caring about his employees situations, but he lacks leadership skills. My manager's boss is also to blame for this mess; he's ignored the signs so far and hasn't investigated what's going on. I hope that things change there.
Sunday, May 27, 2007
etsy, and successful card-table shopping!
I like etsy because there's a sense of community there, and I've made some friends there. However, in many ways, the site is the product of a couple of people who sat around and said "hey, let's create a site where people can sell hand-crafted stuff". They have now become victims of their own success; they have tens of thousands of sellers and buyers, but many of the site features are non-functional.
For example, the search doesn't work properly. I won't go into details, but suffice it to say that it is extremely difficult to find anything there. Alchemy, which is a place for people to post custom item requirements and for sellers to bid on those projects, doesn't work at all and has been taken down. The treasuries are very, very unstable. The shipping information setup is clunky and difficult to work with. All of these have been issues since they introduced new versions of their software back in November.
The thing is, etsy wants all of their ideas to come from within and they want to make the site completely home-grown. The problem is that while their people are very talented, they're not quite up to the task of, say, writing a better search engine. They want to hire someone to do that for them - which means that it's going to be months before it's fixed. I guess I don't understand why they would offer their customers an extremely flawed search because they want to write it themselves - but they don't have the knowledge to do it.
I should stop caring about what goes on behind the scenes there. The fact that I do care tells me that I will want to return to work at some point. Yes, I'm like that at work, too, as anyone who's worked with me knows. When I get myself worked up enough, I have been known to try to change things. It's part of what I do and who I am at work.
On a lighter note, we went to a different Linens 'n Things that's actually closer to us and found the card table and chairs! It was more expensive than on the website, but I bought it anyways. I'm quite happy with it. It's easy to create things on it, it's pretty portable, and we now have a LOT of folding chairs :) Yay! We'll return the one I bought yesterday as this one is WAY better.
For example, the search doesn't work properly. I won't go into details, but suffice it to say that it is extremely difficult to find anything there. Alchemy, which is a place for people to post custom item requirements and for sellers to bid on those projects, doesn't work at all and has been taken down. The treasuries are very, very unstable. The shipping information setup is clunky and difficult to work with. All of these have been issues since they introduced new versions of their software back in November.
The thing is, etsy wants all of their ideas to come from within and they want to make the site completely home-grown. The problem is that while their people are very talented, they're not quite up to the task of, say, writing a better search engine. They want to hire someone to do that for them - which means that it's going to be months before it's fixed. I guess I don't understand why they would offer their customers an extremely flawed search because they want to write it themselves - but they don't have the knowledge to do it.
I should stop caring about what goes on behind the scenes there. The fact that I do care tells me that I will want to return to work at some point. Yes, I'm like that at work, too, as anyone who's worked with me knows. When I get myself worked up enough, I have been known to try to change things. It's part of what I do and who I am at work.
On a lighter note, we went to a different Linens 'n Things that's actually closer to us and found the card table and chairs! It was more expensive than on the website, but I bought it anyways. I'm quite happy with it. It's easy to create things on it, it's pretty portable, and we now have a LOT of folding chairs :) Yay! We'll return the one I bought yesterday as this one is WAY better.
Saturday, May 26, 2007
Working on my jewelry
We spent most of the afternoon looking for a card table for me to do my jewelry on in the living room. You wouldn't think that it would be difficult to find a boring thing like a card table, would you? There was this one at Linens 'n Things with 4 folding chairs for $100, and we had a 20% off coupon, so that would have been a good price. Our local Linens 'n Things didn't have them, though :( We ended up buying a folding camp table that's 2 1/2ft square instead. It's got slats, but it works ok. I think I'd love the other one we couldn't find, but, well, that kind of thing happens.
I am also thinking about the upcoming show. Three of us are sharing a 10ft square space. One person will bring a cover thingy for us to stand under, and the tables will be arranged around the front and sides of the space, I guess (unless it rains). I don't expect to get the front table, so I don't think that I'd get more than about 2ft at the front and about four to six feet up the side, which is plenty for me. I definitely want to differentiate my work from everyone else's.
I'm thinking of getting some garden edging things and maybe a wire obelisk for the back to hopefully make a statement. I'll definitely need to put some thought into this - even if people really do spend a lot of money there, I want to have a nice and elegant looking display. Any thoughts?
I am also thinking about the upcoming show. Three of us are sharing a 10ft square space. One person will bring a cover thingy for us to stand under, and the tables will be arranged around the front and sides of the space, I guess (unless it rains). I don't expect to get the front table, so I don't think that I'd get more than about 2ft at the front and about four to six feet up the side, which is plenty for me. I definitely want to differentiate my work from everyone else's.
I'm thinking of getting some garden edging things and maybe a wire obelisk for the back to hopefully make a statement. I'll definitely need to put some thought into this - even if people really do spend a lot of money there, I want to have a nice and elegant looking display. Any thoughts?
Friday, May 25, 2007
Treasury and more crafts
I got myself a Treasury; I am again showcasing the Jewelry on Etsy Team (JET). The treasury is here and is currently on the front page of the treasury (although that won't be true forever). There's so much talent there; I'm honoured to be part of the group. Of course I love my jewelry, too :)
I'm still working on pieces for the show on June 9. I don't have nearly enough; right now I think the count is at about 65 pieces, and I should have double that. I suspect that I won't have enough pieces. That's ok, I guess - I'm sharing the booth with two other people, so in the unlikely event that I sell out, the other two can fill up the booth. I highly doubt that I'll sell every single piece I've made, though, so I think I'll be ok :)
I'm still working on pieces for the show on June 9. I don't have nearly enough; right now I think the count is at about 65 pieces, and I should have double that. I suspect that I won't have enough pieces. That's ok, I guess - I'm sharing the booth with two other people, so in the unlikely event that I sell out, the other two can fill up the booth. I highly doubt that I'll sell every single piece I've made, though, so I think I'll be ok :)
Bellydancing picture
The picture from last night is here, from the Haft Vadi site. I'm in the back at the center :) My instructor is at the front.
Thursday, May 24, 2007
Bellydancing :)
I got to go to bellydancing class tonight. I'd missed last week because of the pain :( Even though it's freakishly hot and humid here with a smog advisory, the studio wasn't too bad. I wore a tank top which helped keep me cool, and most of the other people in class dressed light as well.
At the end of the class the instructor's husband (who teaches drumming) took pictures of us dancing. I guess there will be a feature in something tomorrow. I hope I can get ahold of a copy online. Not that I'm particularly good at it or that I was doing anything correctly, but it is fun and I was smiling :)
The weather is going to break tomorrow, thank goodness. This is just a taste of what we'll see later on in the summer, I know. The humidity and smog issues are the biggest drawbacks to living in Southern Ontario.
At the end of the class the instructor's husband (who teaches drumming) took pictures of us dancing. I guess there will be a feature in something tomorrow. I hope I can get ahold of a copy online. Not that I'm particularly good at it or that I was doing anything correctly, but it is fun and I was smiling :)
The weather is going to break tomorrow, thank goodness. This is just a taste of what we'll see later on in the summer, I know. The humidity and smog issues are the biggest drawbacks to living in Southern Ontario.
Wednesday, May 23, 2007
Less tired
Ian and I are trying to make sure that I both get to sleep and get up at the same times each day. So far, I've been going to bed at about 10:30pm and getting up around 10:30am. Except for last night, when I went to sleep around midnight and got up at 10:30pm. I'm a little tired today, but I don't feel quite as exhausted as I used to. Going off of the clonazepam was definitely the right thing to do. I'm hoping to get up a little earlier each day until I'm able to get up at a more normal hour.
I also managed to get some photos taken and edited and put some new stuff up on my etsy store. I've got a ton of stuff that I've made in preparation for the craft show on June 9. I still need pictures of them :)
I also managed to get some photos taken and edited and put some new stuff up on my etsy store. I've got a ton of stuff that I've made in preparation for the craft show on June 9. I still need pictures of them :)
Tuesday, May 22, 2007
An uneventful (and therefore relaxing) day
So today was pretty uneventful. The pain is back under control, and I hope to not have to mention it again for a loooong time :) I sold some more earrings, which is always exciting, and I made some more as well.
I still have to re-take photos of some stuff to include the new backgrounds, and I need to take photos of some new stuff. I've got the craft show coming up on June 9 and I'm making stuff in an attempt to sell a bunch of stuff. I hope it goes well, but I'm trying to not get my hopes up too high - I don't want to wind up disappointed.
I guess it's worth telling you that the lymphedema is back in my left hand. It's still quite mild but I'll have to wear my sleeve and stuff and start doing the exercises they gave me. I think I have some smaller generalized swelling as well, probably due to the heat. It just gets worse in the hand because they took lymph nodes out of that side back in 2000 when I had my first cancer. I have swelling and pain in the area of the surgery last year. Funny, I'd thought that the tenderness there was due to the cancer, but the tenderness hasn't gone away since they took the cancer out of there. Strange.
I still have to re-take photos of some stuff to include the new backgrounds, and I need to take photos of some new stuff. I've got the craft show coming up on June 9 and I'm making stuff in an attempt to sell a bunch of stuff. I hope it goes well, but I'm trying to not get my hopes up too high - I don't want to wind up disappointed.
I guess it's worth telling you that the lymphedema is back in my left hand. It's still quite mild but I'll have to wear my sleeve and stuff and start doing the exercises they gave me. I think I have some smaller generalized swelling as well, probably due to the heat. It just gets worse in the hand because they took lymph nodes out of that side back in 2000 when I had my first cancer. I have swelling and pain in the area of the surgery last year. Funny, I'd thought that the tenderness there was due to the cancer, but the tenderness hasn't gone away since they took the cancer out of there. Strange.
Monday, May 21, 2007
More on pain, and a question
Ok, so my statement that the pain is under control appears to have them premature. I tidied up around the house today - it wasn't anything strenuous, believe me :) - and the pain came back with a vengeance. This sucks :( I had to take percocet to get that pain under control. Sigh.
Does anyone know whether Volvo has recently changed their logo to include an arrow pointing upwards and to the right of the big circle in their logo, or whether this has always been their logo? I mention it because their logo now looks a lot like the symbol for men - which is a circle with an arrow pointing up and to the right (the symbol for women is a circle with a cross extending out the bottom). I don't know why they would have changed their logo to be implicitly masculine, or why the logo would have been designed to be masculine in the first place. Clearly, they are not marketing to me - not that I'm planning to buy a car anytime soon, but if I was, I think that it wouldn't be a Volvo.
Does anyone know whether Volvo has recently changed their logo to include an arrow pointing upwards and to the right of the big circle in their logo, or whether this has always been their logo? I mention it because their logo now looks a lot like the symbol for men - which is a circle with an arrow pointing up and to the right (the symbol for women is a circle with a cross extending out the bottom). I don't know why they would have changed their logo to be implicitly masculine, or why the logo would have been designed to be masculine in the first place. Clearly, they are not marketing to me - not that I'm planning to buy a car anytime soon, but if I was, I think that it wouldn't be a Volvo.
I got a treasury!
I managed to snag a treasury today :) I am featuring the Jewelry on Etsy Team (JET); today I chose pink items. You can see my treasury here. Personally, I think I curated quite an attractive treasury that I think is front-page worthy.... but then I always think that my treasuries are good enough to show up on the front page :)
You see, what the etsy admin people do every once in a while is pick a treasury from the ones that users like me curate and put it on the front page. It's great exposure for both the people on the list and the person that put the list together. The JET ones may not be as suitable for the front page as some others that I've seen or made, because the themes may not be as strong, but I can hope :)
You see, what the etsy admin people do every once in a while is pick a treasury from the ones that users like me curate and put it on the front page. It's great exposure for both the people on the list and the person that put the list together. The JET ones may not be as suitable for the front page as some others that I've seen or made, because the themes may not be as strong, but I can hope :)
Sunday, May 20, 2007
I think I've got it
Ok, I've re-taken photos for each item in my etsy store. I'm using very pale pastel backgrounds in ivory (pale yellow), green, aqua, purple, and peachy-pink. I'm much happier with these photos because I think that the earrings and necklaces "pop" more than they did with either the white background or the darker, more saturated backgrounds. I think I need to lighten a few more just a little bit, but overall I'm happy. What do you think?
I also think that my pain has turned a corner. It was really, really bad last night and I didn't get to sleep until quite late. Since then it's been well under control. Let's hope it stays that way :)
Overall, it's been a pretty good day. I'm looking forward to actually making some things tomorrow, though - photographing and editing takes a loooooong time.
I also think that my pain has turned a corner. It was really, really bad last night and I didn't get to sleep until quite late. Since then it's been well under control. Let's hope it stays that way :)
Overall, it's been a pretty good day. I'm looking forward to actually making some things tomorrow, though - photographing and editing takes a loooooong time.
Saturday, May 19, 2007
More on colours, pain, and shopping
Thank you for your comments and feedback on the colours in the photos. I'm not going to please everyone, I'm afraid, but I would like my items to look appealing to someone looking to buy things like mine. I've retaken some photos and tweaked some others; what do you think now? I tend to think that coloured backgrounds are preferable to white backgrounds, because the white goes grey in the photos. However, I'm having trouble with the colours, as you can probably tell.
So, here are some more questions for you, if you don't mind: have I got the "right" colours? I like the colours I'm using as background, but I'm wondering if they're the best they can be. Do you think very light primary colours or very light secondary colours (for either paint or light) would work better? Or some other colour combination, given the colours that I usually work with in my jewelry - pink, aqua, purple, and green. Thanks for any feedback you can give me; I'm very grateful to you for any help you can provide.
I spent the afternoon shopping; I had wanted a few new tops for the season. I went to Winners, where I bought two dresses: I have one of them in black already (it's a t-shirt dress that is super-comfortable and looks nice) and I bought a duplicate in pink. The other dress is brown and flowy and looked really nice on me. I wandered over to Mark's Work Wearhouse afterwards and bought seven tops, all on sale. Finally, I bought some Physician's Formula makeup because it's 40% off at Shoppers Drug Mart this week :) Whew!
My pain is better controlled than last week but not entirely under control because I do have spikes of pain occasionally. They aren't as prolonged or as painful as before, so I'm not taking percocet for them. Realistically, I should take the percocet because I have breakthrough pain. Thing is, I don't like the percocet; they make me hazy and stupid. I don't really know what to do to get this pain totally under control; my doctor said that the pain should go away and that I should be able to start lowering my painkiller intake. Ummmm, the pain is not going away. Sigh.
I have stopped taking the clonazepam at night, I'm drinking more water, and I am establishing a regular routine of going to sleep at about 10:30pm and getting up about 10:30am. I'm having about a half a cup of caffeinated coffee at 11am; I expect this to go down. I am finding that I'm less sleepy during the day (taking into account the increased painkiller, of course). There are a couple of other things I want to try, too. I like being less tired.
So, here are some more questions for you, if you don't mind: have I got the "right" colours? I like the colours I'm using as background, but I'm wondering if they're the best they can be. Do you think very light primary colours or very light secondary colours (for either paint or light) would work better? Or some other colour combination, given the colours that I usually work with in my jewelry - pink, aqua, purple, and green. Thanks for any feedback you can give me; I'm very grateful to you for any help you can provide.
I spent the afternoon shopping; I had wanted a few new tops for the season. I went to Winners, where I bought two dresses: I have one of them in black already (it's a t-shirt dress that is super-comfortable and looks nice) and I bought a duplicate in pink. The other dress is brown and flowy and looked really nice on me. I wandered over to Mark's Work Wearhouse afterwards and bought seven tops, all on sale. Finally, I bought some Physician's Formula makeup because it's 40% off at Shoppers Drug Mart this week :) Whew!
My pain is better controlled than last week but not entirely under control because I do have spikes of pain occasionally. They aren't as prolonged or as painful as before, so I'm not taking percocet for them. Realistically, I should take the percocet because I have breakthrough pain. Thing is, I don't like the percocet; they make me hazy and stupid. I don't really know what to do to get this pain totally under control; my doctor said that the pain should go away and that I should be able to start lowering my painkiller intake. Ummmm, the pain is not going away. Sigh.
I have stopped taking the clonazepam at night, I'm drinking more water, and I am establishing a regular routine of going to sleep at about 10:30pm and getting up about 10:30am. I'm having about a half a cup of caffeinated coffee at 11am; I expect this to go down. I am finding that I'm less sleepy during the day (taking into account the increased painkiller, of course). There are a couple of other things I want to try, too. I like being less tired.
Friday, May 18, 2007
Colours and movies
I have changed my first photos in my Etsy store to have coloured backgrounds. I wanted to have more colour in the pictures because the white tends to look kind of grey. I have a peachy-creamsicle colour, an aqua, a green, and a lavender-ish purple.
We made sheets of each colour by taking a transparent sheet and taping over metallic cardstock in a coordinating colour. That gives a sort of frosty look with a sheen underneath. I'm very happy with the colours themselves, but I don't think I'm using the right colour in every picture, necessarily. Looking at the pictures I've taken, I see I should use less purple and more aqua :) What do you think of the non-white backgrounds? Honest opinions only, please, and if you don't want to be honest publicly, please email me :)
We watched Tideland today. It's a movie directed by Terry Gilliam and of course it's freaky in a Terry Gilliam kind of way. It's good but weird, unspeakably sad, disturbing, and grotesque all at the same time. The movie is about a young girl who's maybe 6 or 8; the things that happen to her are pretty bad, but the movie spends quite a lot of time in her head. The fantasies of a 6 or 8-year-old girl can be weird.... and hers certainly are. In many ways hers are much older than she is, making the film even more disturbing. This movie is apparently based on a book by Mitch Cullin, and I'd definitely like to read that along with the other books in the "Texas trilogy". We'd recommend this movie for adults only and only if you appreciate weird in all of its glory. Children should definitely NOT see this movie.
My pain has not yet completely subsided which is driving me crazy. My sternum is starting to hurt less, but it's still hurting. Sigh. My apologies for whining about it, but it's not usually this noticeable for this long.
We made sheets of each colour by taking a transparent sheet and taping over metallic cardstock in a coordinating colour. That gives a sort of frosty look with a sheen underneath. I'm very happy with the colours themselves, but I don't think I'm using the right colour in every picture, necessarily. Looking at the pictures I've taken, I see I should use less purple and more aqua :) What do you think of the non-white backgrounds? Honest opinions only, please, and if you don't want to be honest publicly, please email me :)
We watched Tideland today. It's a movie directed by Terry Gilliam and of course it's freaky in a Terry Gilliam kind of way. It's good but weird, unspeakably sad, disturbing, and grotesque all at the same time. The movie is about a young girl who's maybe 6 or 8; the things that happen to her are pretty bad, but the movie spends quite a lot of time in her head. The fantasies of a 6 or 8-year-old girl can be weird.... and hers certainly are. In many ways hers are much older than she is, making the film even more disturbing. This movie is apparently based on a book by Mitch Cullin, and I'd definitely like to read that along with the other books in the "Texas trilogy". We'd recommend this movie for adults only and only if you appreciate weird in all of its glory. Children should definitely NOT see this movie.
My pain has not yet completely subsided which is driving me crazy. My sternum is starting to hurt less, but it's still hurting. Sigh. My apologies for whining about it, but it's not usually this noticeable for this long.
Thursday, May 17, 2007
Doctor's appointment
So I saw my family doctor today and he wants me to keep taking the higher painkillers. The pain hasn't gone away completely; it's definitely still there. Aaargh. He says that the main reason that I am so tired is the painkillers. I asked him about taking morphine, but he said that he would give me that later when the pain is more severe or when I'm on my deathbed. I'd heard that Fentanyl is available in oral tablets, but I don't think it's available here :(
I left feeling very discouraged. I really wanted to find a way to be less tired because even though I'm taking painkillers and have no estrogen in body, I figure that I should be able to be awake without the use of caffeine for at least 12 hours every day. Other people with mets manage to do this - why can't I? I know that I don't have anything to do in the sense that I'm not going to work every day, but I don't want to waste my life sleeping, either.
Thank you all for your suggestions about avoiding fatigue. Ian had a few suggestions, too, and I'll try those too. First, I will stop taking the clonazepam at night in the hopes that I'll be less groggy in the morning. Next, I'll incorporate the other suggestions.
I suppose I'm extra-sensitive about all this because a year ago yesterday was my first day off work for the surgery. So this is a kind of an anniversary time, and that's hard on me. I'm probably pushing to be more "normal" because I want to be more like the person I was a year ago. I know I'll never be that person, exactly, but I still want to be her. A year ago I'd expected to go back to work in about 4 months, because we all figured that we were dealing with a surprise tiny recurrence. And I'm still not at work and I don't know when or if I'll ever go back. I guess I'm doing some wallowing in self-pity just now. Don't worry; this will pass, but I have to recognize the significance of the date and what it represents for me.
My family doctor is willing to refer me to any oncologist I want. I need to find myself another one - if any of you know of a good one in the Kitchener-Waterloo area, please let me know.
I left feeling very discouraged. I really wanted to find a way to be less tired because even though I'm taking painkillers and have no estrogen in body, I figure that I should be able to be awake without the use of caffeine for at least 12 hours every day. Other people with mets manage to do this - why can't I? I know that I don't have anything to do in the sense that I'm not going to work every day, but I don't want to waste my life sleeping, either.
Thank you all for your suggestions about avoiding fatigue. Ian had a few suggestions, too, and I'll try those too. First, I will stop taking the clonazepam at night in the hopes that I'll be less groggy in the morning. Next, I'll incorporate the other suggestions.
I suppose I'm extra-sensitive about all this because a year ago yesterday was my first day off work for the surgery. So this is a kind of an anniversary time, and that's hard on me. I'm probably pushing to be more "normal" because I want to be more like the person I was a year ago. I know I'll never be that person, exactly, but I still want to be her. A year ago I'd expected to go back to work in about 4 months, because we all figured that we were dealing with a surprise tiny recurrence. And I'm still not at work and I don't know when or if I'll ever go back. I guess I'm doing some wallowing in self-pity just now. Don't worry; this will pass, but I have to recognize the significance of the date and what it represents for me.
My family doctor is willing to refer me to any oncologist I want. I need to find myself another one - if any of you know of a good one in the Kitchener-Waterloo area, please let me know.
Wednesday, May 16, 2007
I'm still whining
The pain in my sternum has lessened to the point where I only took Percocet once today. Sigh. It is getting better, but I'm getting tired of the pain. I know, you're all getting tired of me whining :)
I did make it to my young women's support group. It was such a relief to go there; I missed last month's, and I haven't been able to make it to my Spirituality and Healing group for a while. Tonight, as part of a broader focus of the group, we made braided hangers. They look kind of cool when they're done. I think if I were making them all the time, I'd use subtle colours. The clothes do stick to the hangars better because of the braid, though.
One thing we talked about today while I was there was my oncologist. I don't feel all that comfortable with her. I feel like she's not giving me complete and accurate information (for example, when she gives me tumour marker numbers she rounds them down), and I feel like she won't tell me things unless I ask. As well, in my last visit when I was complaining about my tiredness, her first answer was that maybe this was my new normal; that I had to accept that I could only do 20% of what I could do before. Personally, I think that there is no reason at all why I should be this tired and I'm certainly not going to roll over and just accept it. I ended up feeling (and still feel) like my oncologist was kinda dismissing my tiredness or giving up on me. I'm concerned that this is a pattern; that when things are dire, she will give up without searching for new possibilities. I want (and think I deserve) better than that.
I just don't know how to go about finding a new oncologist in my area. I don't want to go back to Mississauga. This could be difficult. Oh - people also suggested that I get a referral to the pain specialist over at the cancer center. We'll see.
I did make it to my young women's support group. It was such a relief to go there; I missed last month's, and I haven't been able to make it to my Spirituality and Healing group for a while. Tonight, as part of a broader focus of the group, we made braided hangers. They look kind of cool when they're done. I think if I were making them all the time, I'd use subtle colours. The clothes do stick to the hangars better because of the braid, though.
One thing we talked about today while I was there was my oncologist. I don't feel all that comfortable with her. I feel like she's not giving me complete and accurate information (for example, when she gives me tumour marker numbers she rounds them down), and I feel like she won't tell me things unless I ask. As well, in my last visit when I was complaining about my tiredness, her first answer was that maybe this was my new normal; that I had to accept that I could only do 20% of what I could do before. Personally, I think that there is no reason at all why I should be this tired and I'm certainly not going to roll over and just accept it. I ended up feeling (and still feel) like my oncologist was kinda dismissing my tiredness or giving up on me. I'm concerned that this is a pattern; that when things are dire, she will give up without searching for new possibilities. I want (and think I deserve) better than that.
I just don't know how to go about finding a new oncologist in my area. I don't want to go back to Mississauga. This could be difficult. Oh - people also suggested that I get a referral to the pain specialist over at the cancer center. We'll see.
Tuesday, May 15, 2007
Pain, creating, and cancer
So far, increasing my oxycontin hasn't helped :( For the most part, the "spikes" of pain are less frequent and not as painful, but my sternum is aching at a higher level of pain than normal all the time. This makes me cranky. The extra percocet I'm taking makes me sleepy. I know things will get better, but right now the pain sucks. If you've had chronic pain before, then you know how difficult it can be to live with chronic pain. I'm getting tired of it, I'll tell you.
I am still managing to create things, though. I made a beautiful pair of garnet and freshwater pearl earrings and a matching necklace today. The garnet is high-quality polished, transparent, marquise-shaped ovals. As long as I can still make things, I'm (mostly) happy.
There is an excellent interview with a doctor about metastatic here. The doctor talks about coping, emotional impact, differences in treatments based on estrogen-receptor status, how they do those tests, and pretty well all of the different treatments available. There are a lot of pages with an index on the left and everything is explained in a very clear way with user-friendly language. I'd strongly recommend that you read it if you have any questions about my diagnosis or treatment. The doctor explains everything better than I can.
While reading this article, please keep in mind that I have ER-positive, HER2-negative, metastatic breast cancer and that I was premenopausal when I was first diagnosed with the bone mets. I am currently taking Femara (an aromatase inhibitor) and I'm taking a bisphosphonate. I had my ovaries removed for treatment, making me postmenopausal. I did take Tamoxifen for the first cancer but was taken off it early due to crystals in my corneas - this is a sign of toxicity, which means that I won't be able to take it again.
I am still managing to create things, though. I made a beautiful pair of garnet and freshwater pearl earrings and a matching necklace today. The garnet is high-quality polished, transparent, marquise-shaped ovals. As long as I can still make things, I'm (mostly) happy.
There is an excellent interview with a doctor about metastatic here. The doctor talks about coping, emotional impact, differences in treatments based on estrogen-receptor status, how they do those tests, and pretty well all of the different treatments available. There are a lot of pages with an index on the left and everything is explained in a very clear way with user-friendly language. I'd strongly recommend that you read it if you have any questions about my diagnosis or treatment. The doctor explains everything better than I can.
While reading this article, please keep in mind that I have ER-positive, HER2-negative, metastatic breast cancer and that I was premenopausal when I was first diagnosed with the bone mets. I am currently taking Femara (an aromatase inhibitor) and I'm taking a bisphosphonate. I had my ovaries removed for treatment, making me postmenopausal. I did take Tamoxifen for the first cancer but was taken off it early due to crystals in my corneas - this is a sign of toxicity, which means that I won't be able to take it again.
Monday, May 14, 2007
Doctor's appointment and some shopping
I got to see my doctor today. All the tests that I did over the last few weeks are perfectly normal. My thyroid is normal (so my thyroid isn't causing my tiredness), my blood counts are normal - well, my white blood count and my neutrophil counts are low, but that's normal for me - and so I'm normal. Except for the pain, tiredness, and woogly back, that is.
My doctor is upping my Oxycontin for the next two days to be 120mg three times a day instead of 80, 80, and 120mg (my normal routine). This will, we hope, get the pain under control. I'll see him on Thursday to verify that my sternal pain is gone and we'll cut back the painkillers to normal then.
Once we don't have pain to deal with, he'll start playing with my other meds to see if he can make me less tired. He thinks that either the Cipralex or the clonazepam might be making me tired. I think he wants to drop my Cipralex dose - I don't think it'll make a difference, since I was tired with it at the lower dose and we're certainly not going to go below that.
Normally, my doctor would prescribe muscle relaxants to deal with my woogly back. However, I'm on clonazepam and wicked painkillers, so muscle relaxants aren't really a good idea. And taking them when my back is woogly doesn't help, anyways. Either way, he'll try and do something about that, too.
After one of the appointments today we went to a mall and I shopped around for a bit. I went into H&M and bought a couple of skirts. One of them was supposed to be $10 off, but I didn't realize that the person had rung it in wrong until afterwards. So I went back and said that it was supposed to be on sale. She ran around for a bit looking for some special tag or something and finally said that she would treat it as a refund and then have me repurchase the skirt. I'd paid by debit, so that kinda sucks; I'll have three transaction fees :(
What annoyed me, though, was that she asked me to fill in my name, address, and phone number for the return. I said, "but I'm not returning it; the price was wrong. I'm not returning the skirt." She said that they had to gather this information for the return slip. I said quite nicely, "but this isn't a return. The price rang through wrong and you're correcting it. I'm not returning the skirt. I'm paying the right price for it." She then asked me to print my name and I compromised by signing it instead. Sigh. This is one of the many reasons I don't usually shop at H&M.
My doctor is upping my Oxycontin for the next two days to be 120mg three times a day instead of 80, 80, and 120mg (my normal routine). This will, we hope, get the pain under control. I'll see him on Thursday to verify that my sternal pain is gone and we'll cut back the painkillers to normal then.
Once we don't have pain to deal with, he'll start playing with my other meds to see if he can make me less tired. He thinks that either the Cipralex or the clonazepam might be making me tired. I think he wants to drop my Cipralex dose - I don't think it'll make a difference, since I was tired with it at the lower dose and we're certainly not going to go below that.
Normally, my doctor would prescribe muscle relaxants to deal with my woogly back. However, I'm on clonazepam and wicked painkillers, so muscle relaxants aren't really a good idea. And taking them when my back is woogly doesn't help, anyways. Either way, he'll try and do something about that, too.
After one of the appointments today we went to a mall and I shopped around for a bit. I went into H&M and bought a couple of skirts. One of them was supposed to be $10 off, but I didn't realize that the person had rung it in wrong until afterwards. So I went back and said that it was supposed to be on sale. She ran around for a bit looking for some special tag or something and finally said that she would treat it as a refund and then have me repurchase the skirt. I'd paid by debit, so that kinda sucks; I'll have three transaction fees :(
What annoyed me, though, was that she asked me to fill in my name, address, and phone number for the return. I said, "but I'm not returning it; the price was wrong. I'm not returning the skirt." She said that they had to gather this information for the return slip. I said quite nicely, "but this isn't a return. The price rang through wrong and you're correcting it. I'm not returning the skirt. I'm paying the right price for it." She then asked me to print my name and I compromised by signing it instead. Sigh. This is one of the many reasons I don't usually shop at H&M.
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