Gozer saw the veterinary ophthalmologist for her three-month follow-up appointment. We spent just over an hour there this morning because Gozer needed her pupils dilated. The technician didn't dilate her pupils at first so the appointment took a little bit longer than it should have. From now on Gozer's pupils will always be dilated at the beginning of these appointments to save everyone some time.
Gozer's cataract is unchanged, which is fabulous news. It means that the cataract isn't growing quickly even though it kind of appeared overnight.
The only thing that made us nervous was that when the technician first tested the pressure of her eye, the pressure of her cataract eye was considerably higher than that of her normal eye but when the doctor re-tested her eyes the pressure was about the same. Of course they get these numbers by putting a drop in her eye to harden the cornea and tapping it with an electronic measuring tool so I think it's possible to tap a little too hard and to give a false reading. The doctor did the test a few times on her cataract eye and came up with two numbers that matched the non-cataract eye and one that was near the original measurement. Clearly that test isn't always reliable.
We're to continue to give Gozer the drops we've been giving her and we'll go back for another checkup in six months.
Wednesday, May 29, 2013
Saturday, May 18, 2013
Was feeling sick but I think I'm getting better
For the last couple of days I've really felt "off". I was really tired at the beginning of the week and then on Wednesday I started to feel not right. Over the last two days I could only eat half of my breakfast and couldn't drink my coffee; I couldn't eat anything else through the day. I felt queasy and the thought of food wasn't appealing at all.
I was also exhausted and weak and having chills and shakes (although I didn't have a fever) and I was having trouble with woogly back (like restless legs, I guess, but all over my back). I couldn't stop moving and I couldn't get comfortable at all so I was ending up in these awkward half-upside-down positions while moaning and whining. Sometimes having a very hot bath followed by a nap helped but other times nothing helped.
Gozer knew that something was wrong and she tried so hard to comfort me. She tried licking my face and climbing on me but I couldn't bear her weight. When I slept, she curled up very close to me (often taking my blankets) and carrying around my stuffed monkey. Ian wasn't happy to see that Gozer was on the bed but I liked having her there.
I thought that the problem might have been that I was constipated since my diet was different during our trip. The only thing that calmed my woogly back was percocet which would also have calmed my intestines - which wouldn't help if I was in fact constipated. Still, last night I was so desperate to stop the woogles that I had to do something. I asked Ian to get me some Ducolax (in case I was constipated) because I figured that would offset the effects of the percocet.
I also wondered if there was something wrong with one of my painkiller patches. I wear two of them and alternate changing them so that I don't have to go through withdrawl symptoms. Since the percocet helped, it's possible that the patch that got changed this morning was faulty or had been changed incorrectly beforehand or something. But then, what I was feeling wasn't quite the same as the feeling of opiate withdrawl that I've had before, which for me always involves a crazy amount of sweating. I wasn't experiencing that this time around.
I slept twelve hours last night and woke up feeling a LOT better. No woogles, I was hungry, and I wanted coffee. I had some jam on toast and had my regular morning coffee, and I had some toast later on in the day. I was even able to go outside and do some very light yard work, which I couldn't even have thought of doing over the last few days. The Dulcolax did achieve some results a bit later in the day but I wouldn't say that I was actually constipated. Or maybe I was, but I don't know if that was what was wrong and causing such terrible woogles, queasiness, and chills.
I still don't feel 100%; I don't want to eat all that much and chewing gum makes me feel very, very queasy. But I feel so much better than I have over the last few days. I think I might even be able to walk Gozer tonight, which is something I haven't done this whole week. I hope I keep getting better but I wish I knew why I've been so sick this last week.
I was also exhausted and weak and having chills and shakes (although I didn't have a fever) and I was having trouble with woogly back (like restless legs, I guess, but all over my back). I couldn't stop moving and I couldn't get comfortable at all so I was ending up in these awkward half-upside-down positions while moaning and whining. Sometimes having a very hot bath followed by a nap helped but other times nothing helped.
Gozer knew that something was wrong and she tried so hard to comfort me. She tried licking my face and climbing on me but I couldn't bear her weight. When I slept, she curled up very close to me (often taking my blankets) and carrying around my stuffed monkey. Ian wasn't happy to see that Gozer was on the bed but I liked having her there.
I thought that the problem might have been that I was constipated since my diet was different during our trip. The only thing that calmed my woogly back was percocet which would also have calmed my intestines - which wouldn't help if I was in fact constipated. Still, last night I was so desperate to stop the woogles that I had to do something. I asked Ian to get me some Ducolax (in case I was constipated) because I figured that would offset the effects of the percocet.
I also wondered if there was something wrong with one of my painkiller patches. I wear two of them and alternate changing them so that I don't have to go through withdrawl symptoms. Since the percocet helped, it's possible that the patch that got changed this morning was faulty or had been changed incorrectly beforehand or something. But then, what I was feeling wasn't quite the same as the feeling of opiate withdrawl that I've had before, which for me always involves a crazy amount of sweating. I wasn't experiencing that this time around.
I slept twelve hours last night and woke up feeling a LOT better. No woogles, I was hungry, and I wanted coffee. I had some jam on toast and had my regular morning coffee, and I had some toast later on in the day. I was even able to go outside and do some very light yard work, which I couldn't even have thought of doing over the last few days. The Dulcolax did achieve some results a bit later in the day but I wouldn't say that I was actually constipated. Or maybe I was, but I don't know if that was what was wrong and causing such terrible woogles, queasiness, and chills.
I still don't feel 100%; I don't want to eat all that much and chewing gum makes me feel very, very queasy. But I feel so much better than I have over the last few days. I think I might even be able to walk Gozer tonight, which is something I haven't done this whole week. I hope I keep getting better but I wish I knew why I've been so sick this last week.
Monday, May 13, 2013
Sick with a side of whine
I don't know why but I'm feeling like crap today. I'm exhausted, I've got a headache, and my stomach is queasy. I hope I didn't catch anything while I was away.
I'd thought about going to Toronto on Thursday for the Society for North American Goldsmiths conference - it's for metalsmiths in North America and it's held in different cities each year. Having it practically in my own backyard is an opportunity that's almost too good to miss. However, the conference goes from 8:30am to 5pm which means that I'd need to be awake at 5am and wouldn't get home until 9pm.... and I'm not sure I'm up for that.
If I hadn't been away last week or I wasn't feeling quite so sick today, I think I could probably do the conference without exhausting myself too much. However, I'm worried that if I do push myself to go, I'll end up even more exhausted and it'll end up taking days or weeks to recover.
But I really wanted to go. It's a little frustrating to run smack into my limitations. The grown-up thing to do is to accept that I have limitations and not go to the conference on Thursday. Sigh. I can travel to the conference another year.
I'd thought about going to Toronto on Thursday for the Society for North American Goldsmiths conference - it's for metalsmiths in North America and it's held in different cities each year. Having it practically in my own backyard is an opportunity that's almost too good to miss. However, the conference goes from 8:30am to 5pm which means that I'd need to be awake at 5am and wouldn't get home until 9pm.... and I'm not sure I'm up for that.
If I hadn't been away last week or I wasn't feeling quite so sick today, I think I could probably do the conference without exhausting myself too much. However, I'm worried that if I do push myself to go, I'll end up even more exhausted and it'll end up taking days or weeks to recover.
But I really wanted to go. It's a little frustrating to run smack into my limitations. The grown-up thing to do is to accept that I have limitations and not go to the conference on Thursday. Sigh. I can travel to the conference another year.
Sunday, May 12, 2013
Our trip
We're back! Ok, we got back on Friday night but I've been really tired. The trip to the Dominican Republic was ok. We stayed at a 4 1/2 star all-inclusive resort and we've never been to a place quite that fancy. We don't really want all the services that such a fancy place provides, like turn-down service at night (where they close the blinds in the room, turn the comforter down and leave chocolates, and leave slippers by each side of the bed) and the luggage-handling.
They wanted to take our luggage up to our room themselves when we got there and that's weird to us; then when we left, they had us pack a couple of hours early so that they could get the luggage out of the room early. I know that the staff at such a fancy resort can be trusted and all that but I'm uncomfortable having my luggage out of my sight and control.
The resort itself was lovely in that manicured, pesticide-spraying way. The pesticide meant that there were no mosquitoes, which was nice, and better(?) than getting malaria. There were a ton of different kinds of palm trees there which was really neat. There wasn't a lot of air-conditioning there; the buildings were open to the breezes and had fans that helped to keep the areas cool. The room (which was actually a suite with a kitchen, dining area, living room, bedroom, jacuzzi-tub room, and bathroom) was air-conditioned and had fans to keep the air moving.
The beaches there are beautiful; the sand has the texture of sugar. They're kept fairly clean with the seaweed raked off the beach each morning. The ocean is very, very warm and lovely to swim in.
The resort had a number of restaurants but we ate at the buffet restaurant for breakfast, lunch, and dinner. There was a good selection of foods for each meal and while we had to extend our low-fat diet a bit we were able to keep to it as much as possible.
The major excursion we did was this snorkeling tour. There was a big group of us and they took us to this "snorkel park" with penned up sharks and manta rays. I didn't go snorkeling because I've never done it, I suck at swimming, and I'm not sure I'm fit enough to do it. It's just as well that I didn't go because they offered no instruction at all on using the snorkeling equipment; as well, the people from the tour company that were in the water spoke no English. I'd like to try snorkeling but in a more controlled situation, and this wasn't it.
The tour also went to "Paradise", a natural pool just off the coast. It was fairly shallow for normal adults at just over four feet deep and it was perfectly calm. A number of tour boats were there and some were doing line dances there. Unfortunately it was a little cold because it was cloudy so swimming in the natural pool wasn't as fun as it could have been.
The weather was fairly hot and humid and it rained over a couple of the nights that we were there. The sun, when it was out, was super-hot, so we wore sunscreen and sun protection clothing. We did spend some time reading on the beach under these cabana things that provided shade.
One thing I discovered is that I don't handle the heat very well, especially when it's mixed up with me being tired. I get super-cranky and lose all of the tools I've developed to handle situations where I feel out of control. It was worst when we arrived at the resort and again when we were waiting for our transportation home from the airport.
When we got there, I was exhausted from waking up at 4am and dozing but not really sleeping on the plane and then walking into this wall of heat and humidity. Our room wasn't ready until an hour and a half after we checked in and I was frustrated, hot, exhausted, and terribly cranky. On the way back, I was again exhausted from waking up at 5:30am to see the sunrise and then traveling through the heat. By the time we got to the airport I just wanted to crawl into a hole and sleep. But we had to wait for our transportation to arrive. Sigh.
I'll talk to my psychologist about ways to handle these situations where I'm completely overwhelmed and tired. Avoiding them is best but that's not always possible; really, if I could just accept that the thing I want the most - to be in my own room or at home - can't happen right that second, I'd be better off.
So that was basically the highlights of the trip. We wouldn't choose to go to a hot destination again because we didn't love the heat at all and I'm not sure about the whole all-inclusive resort thing, but I'm glad we had this experience. We did have fun there and I'm happy we went.
They wanted to take our luggage up to our room themselves when we got there and that's weird to us; then when we left, they had us pack a couple of hours early so that they could get the luggage out of the room early. I know that the staff at such a fancy resort can be trusted and all that but I'm uncomfortable having my luggage out of my sight and control.
The resort itself was lovely in that manicured, pesticide-spraying way. The pesticide meant that there were no mosquitoes, which was nice, and better(?) than getting malaria. There were a ton of different kinds of palm trees there which was really neat. There wasn't a lot of air-conditioning there; the buildings were open to the breezes and had fans that helped to keep the areas cool. The room (which was actually a suite with a kitchen, dining area, living room, bedroom, jacuzzi-tub room, and bathroom) was air-conditioned and had fans to keep the air moving.
The beaches there are beautiful; the sand has the texture of sugar. They're kept fairly clean with the seaweed raked off the beach each morning. The ocean is very, very warm and lovely to swim in.
The resort had a number of restaurants but we ate at the buffet restaurant for breakfast, lunch, and dinner. There was a good selection of foods for each meal and while we had to extend our low-fat diet a bit we were able to keep to it as much as possible.
The major excursion we did was this snorkeling tour. There was a big group of us and they took us to this "snorkel park" with penned up sharks and manta rays. I didn't go snorkeling because I've never done it, I suck at swimming, and I'm not sure I'm fit enough to do it. It's just as well that I didn't go because they offered no instruction at all on using the snorkeling equipment; as well, the people from the tour company that were in the water spoke no English. I'd like to try snorkeling but in a more controlled situation, and this wasn't it.
The tour also went to "Paradise", a natural pool just off the coast. It was fairly shallow for normal adults at just over four feet deep and it was perfectly calm. A number of tour boats were there and some were doing line dances there. Unfortunately it was a little cold because it was cloudy so swimming in the natural pool wasn't as fun as it could have been.
The weather was fairly hot and humid and it rained over a couple of the nights that we were there. The sun, when it was out, was super-hot, so we wore sunscreen and sun protection clothing. We did spend some time reading on the beach under these cabana things that provided shade.
One thing I discovered is that I don't handle the heat very well, especially when it's mixed up with me being tired. I get super-cranky and lose all of the tools I've developed to handle situations where I feel out of control. It was worst when we arrived at the resort and again when we were waiting for our transportation home from the airport.
When we got there, I was exhausted from waking up at 4am and dozing but not really sleeping on the plane and then walking into this wall of heat and humidity. Our room wasn't ready until an hour and a half after we checked in and I was frustrated, hot, exhausted, and terribly cranky. On the way back, I was again exhausted from waking up at 5:30am to see the sunrise and then traveling through the heat. By the time we got to the airport I just wanted to crawl into a hole and sleep. But we had to wait for our transportation to arrive. Sigh.
I'll talk to my psychologist about ways to handle these situations where I'm completely overwhelmed and tired. Avoiding them is best but that's not always possible; really, if I could just accept that the thing I want the most - to be in my own room or at home - can't happen right that second, I'd be better off.
So that was basically the highlights of the trip. We wouldn't choose to go to a hot destination again because we didn't love the heat at all and I'm not sure about the whole all-inclusive resort thing, but I'm glad we had this experience. We did have fun there and I'm happy we went.
Sunday, May 05, 2013
Yesterday's Toronto trip
I promised that I'd talk about my appointment in Toronto. I don't know if I mentioned it before, but my oncologist referred me to a clinical trial at Princess Margaret Hospital. Apparently there are about 200 known DNA mutations in different cancers and they're going to figure out whether my tumours have any of those mutations. They've found some treatments that can target those mutations as well.
If another mutation becomes known they'll test my tissue for that, too. They'll even send my oncologist the results to my oncologist so that if the mutations are associated with treatments I can get those treatments. I had thought they were looking for new mutations but they're not doing that; they're just working with what's known.
While I was there, they took my blood so that they could compare generalized mutations (the ones that would show up in my bloodwork and tumour) from cancer-specific mutations. Because I was traveling throughout the day I didn't have as much water as I normally do so I was a bit dehydrated. As a result, the technician who came to take my blood couldn't get any out of my (admittedly pathetic) veins. She walked me down to another place and they accessed my port. I hadn't wanted to go down to the lab because I'd heard that they can take a long time but they weren't busy at all.
After all that, it took my three hours to get home when it should have taken an hour and a half. Poor Gozer was home all by herself for almost eight hours :( When Ian got home he could hear her barking because she was alone. At least we don't have to leave her alone like that very often.
If another mutation becomes known they'll test my tissue for that, too. They'll even send my oncologist the results to my oncologist so that if the mutations are associated with treatments I can get those treatments. I had thought they were looking for new mutations but they're not doing that; they're just working with what's known.
While I was there, they took my blood so that they could compare generalized mutations (the ones that would show up in my bloodwork and tumour) from cancer-specific mutations. Because I was traveling throughout the day I didn't have as much water as I normally do so I was a bit dehydrated. As a result, the technician who came to take my blood couldn't get any out of my (admittedly pathetic) veins. She walked me down to another place and they accessed my port. I hadn't wanted to go down to the lab because I'd heard that they can take a long time but they weren't busy at all.
After all that, it took my three hours to get home when it should have taken an hour and a half. Poor Gozer was home all by herself for almost eight hours :( When Ian got home he could hear her barking because she was alone. At least we don't have to leave her alone like that very often.
Saturday, May 04, 2013
Shopping, shopping, and more shopping
I've been so busy lately with at least one appointment or commitment pretty much every weekday. So far I haven't been too overwhelmed but I'm starting to feel tired and edgy.
I've had an additional pressure for the last few weeks from getting ready for a trip next week. We have an opportunity to go to Punta Cana in the Dominican Republic and even though we don't like the heat or a lot of sunshine, a trip like this doesn't come around too often. Besides, we're staying at a resort, which we've never done before, and we might discover that we love the experience.
Going someplace hot and sunny means that we swimsuits for the pool and ocean as well as sun-protective clothing. In addition to my usual complement of activities - metalsmithing class, physiotherapy for the lymphedema, and doctors appointments - I've been doing a LOT of shopping. Yesterday, for example, I had an appointment in downtown Toronto (more on that tomorrow) and on the way there I stopped by the Sunveil store for a new sunveil jacket for each of us. I have a light blue button-up shirt that I bought years and years ago that's got grime on the cuffs that won't come out so I wanted to replace it.
I also stopped by the MEC to buy some long-sleeved sun-shirts/rashguards that have built-in sun protection for both Ian and myself. Finding long-sleeved shirts like this was quite difficult as the selection for adults is very low in local stores. While I was there, I bought myself a couple of bathing suits. During the last week I've been trying on swimsuits in all sorts of stores to try to figure out which styles are flattering and minimize the difference between my boobs. I don't really want to wear a prosthetic breast while in the pool or at the ocean but I also don't want the difference to be obvious to everyone. It turns out that halter tops with patterns work pretty well.
Trying on swimsuits is one of the most demoralizing activities ever. In my head my skin and muscles are firm and although I'm soft, I'm soft in a curvy way. The reality is that my skin is sagging, as are my muscles, and my legs are less shapely than lumpy and share certain characteristics with tree trunks. The wrong sized suit creates an unattractive muffin-top effect at my hips. I'm not the young woman I used to be and trying on swimsuits is a sad reminder of this fact.
In addition to the stuff I bought yesterday, I'd ordered sun-shirts/rashguards, swimsuits, and board shorts for me online. Not everything fits properly so much of it is being returned but some of it works.
I'm looking forward to the trip. It's a short one (only three nights away) so it'll be long enough to get a sense of what the area and staying at a resort are like. Plus now I have some relatively flattering suits and swimwear :)
I've had an additional pressure for the last few weeks from getting ready for a trip next week. We have an opportunity to go to Punta Cana in the Dominican Republic and even though we don't like the heat or a lot of sunshine, a trip like this doesn't come around too often. Besides, we're staying at a resort, which we've never done before, and we might discover that we love the experience.
Going someplace hot and sunny means that we swimsuits for the pool and ocean as well as sun-protective clothing. In addition to my usual complement of activities - metalsmithing class, physiotherapy for the lymphedema, and doctors appointments - I've been doing a LOT of shopping. Yesterday, for example, I had an appointment in downtown Toronto (more on that tomorrow) and on the way there I stopped by the Sunveil store for a new sunveil jacket for each of us. I have a light blue button-up shirt that I bought years and years ago that's got grime on the cuffs that won't come out so I wanted to replace it.
I also stopped by the MEC to buy some long-sleeved sun-shirts/rashguards that have built-in sun protection for both Ian and myself. Finding long-sleeved shirts like this was quite difficult as the selection for adults is very low in local stores. While I was there, I bought myself a couple of bathing suits. During the last week I've been trying on swimsuits in all sorts of stores to try to figure out which styles are flattering and minimize the difference between my boobs. I don't really want to wear a prosthetic breast while in the pool or at the ocean but I also don't want the difference to be obvious to everyone. It turns out that halter tops with patterns work pretty well.
Trying on swimsuits is one of the most demoralizing activities ever. In my head my skin and muscles are firm and although I'm soft, I'm soft in a curvy way. The reality is that my skin is sagging, as are my muscles, and my legs are less shapely than lumpy and share certain characteristics with tree trunks. The wrong sized suit creates an unattractive muffin-top effect at my hips. I'm not the young woman I used to be and trying on swimsuits is a sad reminder of this fact.
In addition to the stuff I bought yesterday, I'd ordered sun-shirts/rashguards, swimsuits, and board shorts for me online. Not everything fits properly so much of it is being returned but some of it works.
I'm looking forward to the trip. It's a short one (only three nights away) so it'll be long enough to get a sense of what the area and staying at a resort are like. Plus now I have some relatively flattering suits and swimwear :)
Sunday, April 28, 2013
Taxes done for another year
We finally got our taxes done today. Usually we do them over Easter at Ian's parent's but this year Easter was so early that we didn't want to do it. I don't really remember why but it was maybe our receipts and stuff weren't sorted.
Anyways, we meant to go and do our taxes but last weekend we were tired and this weekend Ian was getting over an eye infection. Therefore, we did our taxes at home today. Well, Ian did them, really. They're filed jointly so they're filled out at the same time and mine are dead simple: I have a single T4A slip with a single filled box so there's just the one entry and I'm done. Ian's got more than that to do so he filled all the stuff in. Makes sense, right?
I always owe a little bit because the disability income (which is the single form I get) doesn't withhold any taxes. In previous years, I've owed about $100 but this year I only owed $43. I've paid it and now my annual tax chore is finished.
Anyways, we meant to go and do our taxes but last weekend we were tired and this weekend Ian was getting over an eye infection. Therefore, we did our taxes at home today. Well, Ian did them, really. They're filed jointly so they're filled out at the same time and mine are dead simple: I have a single T4A slip with a single filled box so there's just the one entry and I'm done. Ian's got more than that to do so he filled all the stuff in. Makes sense, right?
I always owe a little bit because the disability income (which is the single form I get) doesn't withhold any taxes. In previous years, I've owed about $100 but this year I only owed $43. I've paid it and now my annual tax chore is finished.
Monday, April 22, 2013
Spring!
Spring is here! Well, mostly - the temperature is a little low for this time of year but I think it's stabilizing to near-normal values. Plants in our garden are growing, the grass is green and growing, the birds are arriving en masse at our feeders, and the ants are here.
Of all the signs of spring, it's the ants that I dislike the most. I don't mind them when they're outside in the ground but they find their way into our house via the cracking caulking around the patio doors. From there they travel through the cracks between the hardwood planks to Gozer's food, other plants, the bird food, and the rest of the kitchen. Each of the last two years we've woken up one day to find huge numbers of ants between two areas.
This year we were lucky; we have Gozer the Huntress. She loves mice but she also loves insects - including ants. Over the last couple of days I've noticed her watching the floor and licking at it. I took a closer look and saw the ants. I spread some diatomaceous earth down around the areas where they travel in the hopes that if they cross the barrier, they'll die.
Because the temperature outside has warmed up, I've been spending time outside working in the garden. One thing I've been working on with my psychologist is figuring out how to do things I like without overdoing it. So the way I've been working is to set an alarm to go off in 30 minutes. When it does go off, I take a break, relax for five or ten minutes, and get a drink of water. Then I evaluate how I'm feeling; if I feel good, I set the alarm for another 30 minutes. I've only been doing this for a couple of days but I seem to be less exhausted than I normally would after doing the work. I hope this process works because I'll need all my strength to deal with the ants.
Of all the signs of spring, it's the ants that I dislike the most. I don't mind them when they're outside in the ground but they find their way into our house via the cracking caulking around the patio doors. From there they travel through the cracks between the hardwood planks to Gozer's food, other plants, the bird food, and the rest of the kitchen. Each of the last two years we've woken up one day to find huge numbers of ants between two areas.
This year we were lucky; we have Gozer the Huntress. She loves mice but she also loves insects - including ants. Over the last couple of days I've noticed her watching the floor and licking at it. I took a closer look and saw the ants. I spread some diatomaceous earth down around the areas where they travel in the hopes that if they cross the barrier, they'll die.
Because the temperature outside has warmed up, I've been spending time outside working in the garden. One thing I've been working on with my psychologist is figuring out how to do things I like without overdoing it. So the way I've been working is to set an alarm to go off in 30 minutes. When it does go off, I take a break, relax for five or ten minutes, and get a drink of water. Then I evaluate how I'm feeling; if I feel good, I set the alarm for another 30 minutes. I've only been doing this for a couple of days but I seem to be less exhausted than I normally would after doing the work. I hope this process works because I'll need all my strength to deal with the ants.
Tuesday, April 16, 2013
Conference fun
I had the best time in Philly at the conference this weekend. Getting there wasn't fun because of the winter storms; my flight into Philly was cancelled and I waited on standby in Chicago for hours before I could get out. Hanging around Chicago's O'Hare airport is less fun than it sounds.
One of the worst parts about being at O'Hare is that they don't provide free wireless internet the way most other airports do. Instead, they have a contract with Boingo and each user has to pay for access. I paid the $4.95 fee for the day via Paypal and happily used the web while I was there. I was shocked and angry when Boingo withdrew another $6.95 fee the next day; I hadn't authorized them to do so and I hadn't accessed their services. Naturally I emailed them right away and while they refused to admit that they had done wrong, my $6.95 fee should be refunded some time in the nest four days. They've asked me to call them if I have any other questions but I'll continue communicating with them via email so that there's a record of what they're telling me.
Some research uncovered the fact that Boigo has screwed over many, many people by overcharging and by making unauthorized charges. Boingo are scammers and it's better to go without internet than to use their services.
Aside from those hassles, my trip was uneventful. The conference wasn't as good as it's been in the past but I was mainly there to see my friends. Saturday night instead of going out to dinner we decided to get together in an open seating area on the floor some were staying on and I enjoyed that so much more than dinner. We hung out and laughed and talked and generally had a great time. I loved it.
Leaving everyone is always bittersweet because I don't know when I"ll see them next ... or if I will see them again. The happy and joyful moments I get to spend with them won't make up for the pain of losing my friends but they make my current life so much better that I couldn't give them up.
One of the worst parts about being at O'Hare is that they don't provide free wireless internet the way most other airports do. Instead, they have a contract with Boingo and each user has to pay for access. I paid the $4.95 fee for the day via Paypal and happily used the web while I was there. I was shocked and angry when Boingo withdrew another $6.95 fee the next day; I hadn't authorized them to do so and I hadn't accessed their services. Naturally I emailed them right away and while they refused to admit that they had done wrong, my $6.95 fee should be refunded some time in the nest four days. They've asked me to call them if I have any other questions but I'll continue communicating with them via email so that there's a record of what they're telling me.
Some research uncovered the fact that Boigo has screwed over many, many people by overcharging and by making unauthorized charges. Boingo are scammers and it's better to go without internet than to use their services.
Aside from those hassles, my trip was uneventful. The conference wasn't as good as it's been in the past but I was mainly there to see my friends. Saturday night instead of going out to dinner we decided to get together in an open seating area on the floor some were staying on and I enjoyed that so much more than dinner. We hung out and laughed and talked and generally had a great time. I loved it.
Leaving everyone is always bittersweet because I don't know when I"ll see them next ... or if I will see them again. The happy and joyful moments I get to spend with them won't make up for the pain of losing my friends but they make my current life so much better that I couldn't give them up.
Tuesday, April 09, 2013
Our cute dog and my lymphedema
Gozer has been hunting chipmunks and mice in our yard since we got her. Last year we caught her with a stiff, dead mouse in her mouth and then a floppy, newly-dead mouse. At that time we weren't sure whether a cat had killed the mice and she'd just taken them or if she'd killed them herself.
Whether she killed those mice or not, we now know for sure that Gozer hunts and kills mice. This morning I watched her follow something through the grass with her ears forward to catch all the noises. I turned away for a couple of seconds and when I turned back she was coming towards me with something in her mouth. She dropped it, picked it up, and ran towards me with it before dropping it in front of me. It was clearly freshly killed by her.
No wonder she eviscerates her plush squeaky toys, and I'm grateful that she didn't get the chance to do that to her kill today. Her new nickname is "The Huntress."
In other news, I feel awful. The physiotherapist did the lymphatic massage on me and I've been feeling awful since then: exhausted, incredibly nauseous, bad heartburn, terrible gas, and smelly evacuations. It's great that the massage did something but I could do without these side effects.
Happily, my compression sleeve and glove have arrived and I'll be picking them up tomorrow. This means that I won't need to wear the compression bandaging all the time and that is some kind of thrilling. I'd feel more thrilled if I didn't feel quite so awful. I hope I'm better tomorrow.
Whether she killed those mice or not, we now know for sure that Gozer hunts and kills mice. This morning I watched her follow something through the grass with her ears forward to catch all the noises. I turned away for a couple of seconds and when I turned back she was coming towards me with something in her mouth. She dropped it, picked it up, and ran towards me with it before dropping it in front of me. It was clearly freshly killed by her.
No wonder she eviscerates her plush squeaky toys, and I'm grateful that she didn't get the chance to do that to her kill today. Her new nickname is "The Huntress."
In other news, I feel awful. The physiotherapist did the lymphatic massage on me and I've been feeling awful since then: exhausted, incredibly nauseous, bad heartburn, terrible gas, and smelly evacuations. It's great that the massage did something but I could do without these side effects.
Happily, my compression sleeve and glove have arrived and I'll be picking them up tomorrow. This means that I won't need to wear the compression bandaging all the time and that is some kind of thrilling. I'd feel more thrilled if I didn't feel quite so awful. I hope I'm better tomorrow.
Saturday, April 06, 2013
Oncologist appointment and more lymphedema
I saw my oncologist yesterday and she is very, very pleased with the improvements she saw in the areas affected by the lymphedema. She's so pleased, in fact, that I don't need to go back for eight weeks.
She was especially pleased with the changes in colour and texture on my affected breast: it's no longer an angry red colour, the tissue can be moved from side to side and is no longer "stuck" to the chest all, and the skin is less bumpy in texture. I guess the changes that I thought were just the morphea were actually from lymphedema caused by the morphea. The morphea made the skin much less elastic which meant that the lymph fluid couldn't move as easily. Eventually the lymph fluid just built up in the breast and backed up into the arm.
I wish I'd known more about lymphedema because then I'd have asked to see the physiotherapist early on. She could have worked on the skin and possibly prevented this whole lymphedema mess. Unfortunately, it occurred to no one that the morphea could cause lymphedema problems because morphea is rare and lymphedema is not well-understood. The lesson here is that if you've had radiation to a body part and you develop any kind of skin condition on that part, look out for lymphedema.
My oncologist is also sending me to Princess Margaret Hospital in Toronto where they're doing this COMPACT (Community Oncology Molecular Profiling in Advanced Cancer Trial) clinical trial which is based on this IMPACT trial. From what I understand, they're looking for genetic mutations in specific cancer types so that they can eventually develop therapies targeted at the effects those mutations cause. The advantage to targeted therapies or treatments is that they're much less toxic to healthy cells and they're very effective.
This clinical trial doesn't require much of anything from me (just a visit to Toronto - everything else happens behind the scenes) and my participation will help in the future. I know that targeted therapies based on this trial are many years or decades away but if the information isn't collected now, those therapies will be even longer in coming. So I'll be participating.
I also asked for a referral to the dietitian on staff - my psychologist had suggested this in my last appointment - and they're setting that up.
I think that's it for yesterday's appointment. In other news, someone had asked about what my arm and hand wrapping looked like so I took a few pictures with my phone with Gozer in the background. Enjoy!
She was especially pleased with the changes in colour and texture on my affected breast: it's no longer an angry red colour, the tissue can be moved from side to side and is no longer "stuck" to the chest all, and the skin is less bumpy in texture. I guess the changes that I thought were just the morphea were actually from lymphedema caused by the morphea. The morphea made the skin much less elastic which meant that the lymph fluid couldn't move as easily. Eventually the lymph fluid just built up in the breast and backed up into the arm.
I wish I'd known more about lymphedema because then I'd have asked to see the physiotherapist early on. She could have worked on the skin and possibly prevented this whole lymphedema mess. Unfortunately, it occurred to no one that the morphea could cause lymphedema problems because morphea is rare and lymphedema is not well-understood. The lesson here is that if you've had radiation to a body part and you develop any kind of skin condition on that part, look out for lymphedema.
My oncologist is also sending me to Princess Margaret Hospital in Toronto where they're doing this COMPACT (Community Oncology Molecular Profiling in Advanced Cancer Trial) clinical trial which is based on this IMPACT trial. From what I understand, they're looking for genetic mutations in specific cancer types so that they can eventually develop therapies targeted at the effects those mutations cause. The advantage to targeted therapies or treatments is that they're much less toxic to healthy cells and they're very effective.
This clinical trial doesn't require much of anything from me (just a visit to Toronto - everything else happens behind the scenes) and my participation will help in the future. I know that targeted therapies based on this trial are many years or decades away but if the information isn't collected now, those therapies will be even longer in coming. So I'll be participating.
I also asked for a referral to the dietitian on staff - my psychologist had suggested this in my last appointment - and they're setting that up.
I think that's it for yesterday's appointment. In other news, someone had asked about what my arm and hand wrapping looked like so I took a few pictures with my phone with Gozer in the background. Enjoy!
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As much of my arm as I could get. The wrapping goes up to my armpit. The wrapping at the very top is a different colour because it's actually a different product with higher compression. We used leftovers to wrap my arm and since it's important to get the wrap good and snug at the top (or else it starts to slide down and that's very uncomfortable), using the higher compression wrap is ok there.
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| My outer forearm and hand on Gozer. The thing you see at the very top of the picture is a purple hippo squeaky that Gozer is holding in her mouth while she sleeps. |
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My inner forearm and hand. The creases you see are from the edges of the inner comfort layer wrapping (and sometimes from the outer layer). Both wrappings spiral up my arm from my hand and when I rotate my arm or hand the edges of the wrappings deform a bit.
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| My hand. There's a bit of bulk over the fleshy part of the thumb which makes it difficult to use the hand. There's extra bulk over the wrist, too, but I needed that to have even compression around the wrist. Because my wrist is narrow it was hard to get the comfort layer tight enough (but not too tight!) around the hand, wrist, and forearm to provide much-needed compression on the wrist. There's extra comfort layer around the wrist which makes wrapping the area sooooo much easier. |
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| My palm and hand. My fingers are coming to get you! |
Monday, April 01, 2013
A long post after a long break
I'm still here! Yesterday was my birthday and I spent it in a low-key way. We were visiting Ian's parents for Easter and Ian's mom made me an angel food cake with an Italian frosting (sugar at the soft ball stage poured into egg whites beaten to soft peaks) so that I could have a cake without any saturated fat. I was touched and pleased that she went to all that trouble to make the super-delicious cake for me. Ian's mom even modified her usual hot cross bun recipe to reduce the saturated fat for us so that we could enjoy more of them.
I spent most of my birthday sitting around and being a bit lazy. I'm ok with being lazy :) I'm finding my days a bit busier what with all of the lymphedema physiotherapy appointments and exercises. The appointments take about an hour and a half out of my day twice a week and the exercises themselves take about a half hour to do, after which I'm supposed to lie down and relax for a few minutes to a half-hour - the longer the better to allow the lymph fluid to move around and settle after its been stimulated by the exercises. The relaxing time after the relaxing, slow exercises usually results in a relaxing nap that lasts until Ian calls to tell me he's coming home.
I'm still trying to get other things done but I'm also trying to not overwhelm myself. I'm getting up early (for me) most days with the appointments and metalsmithing once a week and other appointments. I feel like I'm on the edge of too busy but I haven't gone over that edge.
At least the physiotherapy and exercises seem to be helping the lymphedema. We've started wrapping my fingers as well and they're definitely slimming down; Ian even commented recently that my arm looked smaller. I don't love the bandages but I found a cream that makes my arm itch so much less under them that they're much more bearable than they were. The nurse at the clinic where I get my port flushed gave me samples of Sween 24 and it worked like magic! It absorbed really quickly into the skin and it really helped reduce the irritation and itch. I highly recommend this product.
If it sounds like my life is all lymphedema all the time... it is, kind of. I'm aware of it all the time whether I'm wearing the bandages or not.
Gozer is very happy. The snow recently melted in our backyard and exposed the chipmunk trails from their burrows under the snow. She decided to roll around in them yesterday and got herself completely filthy so ended up with an unexpected bath yesterday. She's getting groomed tomorrow and we'd hoped to not have to clean her before that. She doesn't mind getting the eye drops nearly as much as she did at the beginning: we don't have to hold her still anymore. Yay!
I've also finally given in on the "Gozer on the bed" issue. I wanted Gozer to be able to come on the bed and nap with me when I get to a point where I sleep a lot. Ian pointed out to me that I'm nowhere near that point and it won't be at all difficult to get her to come on the bed at that point. So I'm going to work on being firmer with her and keeping her off the bed.
Part of the reason for keeping her off the bed is to show her that I'm ahead of her in our pack heirarchy. She's not all that well behaved these days, what with barking at other dogs, showing no leash respect, not always coming to us when we call her, and jumping up on all furniture, and we want to train her to be better behaved. We'd like to take her to a dog park because she likes other dogs and clearly wants to play sometimes but can't on a leash. However, because she won't come to us when we call her, we don't think we have enough control over her to take her to the park. We figure that setting me up as a pack leader over her will help to train her out of her bad behaviours and to get control over her so that she can meet other dogs at the park.
On another topic, Ian's asked me to work on putting away my fabric and he's willing to help me do it on weekends. So starting next weekend, we're going to start working on the fabric. This way, I can start looking at doing some sewing in my sewing room. I really want to be sewing (especially once I get the lymphedema compression garments and don't have to be bandaged) but to do it, I need to get some of my fabric put away. I at least need to go through the fabric I might use for a particular project before I start working on that project!
Finally, almost all of our pepper seedlings are growing! Our first batch didn't grow, probably because I didn't water them enough, but after we set up a second batch both batches sprouted. About three-quarters of the seeds from both batches have sprouted and are growing their true leaves, which is a pretty good success rate for peppers, I think. Ian transplanted the seedlings into root trainers today and we'll see how many survive that process. We really only need ten pepper plants (two of each of the five types) and we currently have, let's see, 90 divided by five is 18 of each type.
Anyways, that's about it for me. Written all out it seems like a lot, doesn't it? It's only because it's been much too long.
I spent most of my birthday sitting around and being a bit lazy. I'm ok with being lazy :) I'm finding my days a bit busier what with all of the lymphedema physiotherapy appointments and exercises. The appointments take about an hour and a half out of my day twice a week and the exercises themselves take about a half hour to do, after which I'm supposed to lie down and relax for a few minutes to a half-hour - the longer the better to allow the lymph fluid to move around and settle after its been stimulated by the exercises. The relaxing time after the relaxing, slow exercises usually results in a relaxing nap that lasts until Ian calls to tell me he's coming home.
I'm still trying to get other things done but I'm also trying to not overwhelm myself. I'm getting up early (for me) most days with the appointments and metalsmithing once a week and other appointments. I feel like I'm on the edge of too busy but I haven't gone over that edge.
At least the physiotherapy and exercises seem to be helping the lymphedema. We've started wrapping my fingers as well and they're definitely slimming down; Ian even commented recently that my arm looked smaller. I don't love the bandages but I found a cream that makes my arm itch so much less under them that they're much more bearable than they were. The nurse at the clinic where I get my port flushed gave me samples of Sween 24 and it worked like magic! It absorbed really quickly into the skin and it really helped reduce the irritation and itch. I highly recommend this product.
If it sounds like my life is all lymphedema all the time... it is, kind of. I'm aware of it all the time whether I'm wearing the bandages or not.
Gozer is very happy. The snow recently melted in our backyard and exposed the chipmunk trails from their burrows under the snow. She decided to roll around in them yesterday and got herself completely filthy so ended up with an unexpected bath yesterday. She's getting groomed tomorrow and we'd hoped to not have to clean her before that. She doesn't mind getting the eye drops nearly as much as she did at the beginning: we don't have to hold her still anymore. Yay!
I've also finally given in on the "Gozer on the bed" issue. I wanted Gozer to be able to come on the bed and nap with me when I get to a point where I sleep a lot. Ian pointed out to me that I'm nowhere near that point and it won't be at all difficult to get her to come on the bed at that point. So I'm going to work on being firmer with her and keeping her off the bed.
Part of the reason for keeping her off the bed is to show her that I'm ahead of her in our pack heirarchy. She's not all that well behaved these days, what with barking at other dogs, showing no leash respect, not always coming to us when we call her, and jumping up on all furniture, and we want to train her to be better behaved. We'd like to take her to a dog park because she likes other dogs and clearly wants to play sometimes but can't on a leash. However, because she won't come to us when we call her, we don't think we have enough control over her to take her to the park. We figure that setting me up as a pack leader over her will help to train her out of her bad behaviours and to get control over her so that she can meet other dogs at the park.
On another topic, Ian's asked me to work on putting away my fabric and he's willing to help me do it on weekends. So starting next weekend, we're going to start working on the fabric. This way, I can start looking at doing some sewing in my sewing room. I really want to be sewing (especially once I get the lymphedema compression garments and don't have to be bandaged) but to do it, I need to get some of my fabric put away. I at least need to go through the fabric I might use for a particular project before I start working on that project!
Finally, almost all of our pepper seedlings are growing! Our first batch didn't grow, probably because I didn't water them enough, but after we set up a second batch both batches sprouted. About three-quarters of the seeds from both batches have sprouted and are growing their true leaves, which is a pretty good success rate for peppers, I think. Ian transplanted the seedlings into root trainers today and we'll see how many survive that process. We really only need ten pepper plants (two of each of the five types) and we currently have, let's see, 90 divided by five is 18 of each type.
Anyways, that's about it for me. Written all out it seems like a lot, doesn't it? It's only because it's been much too long.
Friday, March 22, 2013
More lymphedema wrapping adventures
The compression wrapping and I aren't getting along very well. The first wrapping rubbed around my thumb and I felt like I was getting a blister there so I ended up putting a big thing of gauze under the wrapping to provide some padding around the thumb. After I cut off the first wrap yesterday morning I noticed that the skin along my inner forearm was red and bumpy. I think it was a heat rash since I've been known to get them.
My physiotherapist and I decided to try wrapping the arm again for the weekend even though I'd developed the rash. She put an extra layer around the thumb to provide padding so that it wouldn't get blisters. Unfortunately, my skin became unbearably itchy yesterday afternoon underneath the wrapping. It felt like there were things pricking my skin and the slightest movement registered as pain. I ended up taking Benadryl to try to calm the reaction a bit and it did work alhough it left me very sleepy. I ended up asleep for most of yesterday afternoon and evening but at least I didn't feel the itch or pain while I was asleep so that's ok, right?
Then last night I woke up in the middle of the night because the tip of my thumb on the wrapped arm was numb. I fell back asleep and woke up a few times because it was still numb. I tried to shift the wrapping a bit to relieve the pressure on whichever nerve was making my thumb numb but nothing worked - my thumb was still numb. I looked up numbness and this wrapping online and found that if the patient experiences tingling or numbness in the extremities after the wrapping, the wrapping should be removed right away and the doctor contacted.
I don't have a direct phone number for my physiotherapist and by the time I realized that the wrapping needed to come off, it was 4pm and the cancer center switch board was closed. I removed the wrapping anyways because I figured that it was the right thing to do. Now, six hours later, the tip of my thumb is still numb which is a little worrying. I hope that I can recover sensation in it before Monday. I have Raynaud's phenomenon in my hands and feet; could that have contributed to my numb thumb?
My forearm was also quite red and bumpy for a while but it seems to have settled down.
My physiotherapist did say that if this type of wrapping didn't work, we could do the kind of wrapping that they used to do. This other wrapping is changed daily and uses a different product so it might be better for me and my thumb. After this experience I'm wondering if it would be better to go a different wrapping route.
In other lymphedema treatment news, my hand and forearm were measured yesterday for a compression sleeve and glove. There has been no real change in the measurements in the one week but it's important that I have something for my travel in three weeks. The person checked and my measurements don't fit into the ready-to-wear measurements so my sleeve and glove need to be custom-made. It's going to take about two weeks for them to arrive so they'll be here in time for my trip.
Lymphedema and its treatment both suck. Wah!
My physiotherapist and I decided to try wrapping the arm again for the weekend even though I'd developed the rash. She put an extra layer around the thumb to provide padding so that it wouldn't get blisters. Unfortunately, my skin became unbearably itchy yesterday afternoon underneath the wrapping. It felt like there were things pricking my skin and the slightest movement registered as pain. I ended up taking Benadryl to try to calm the reaction a bit and it did work alhough it left me very sleepy. I ended up asleep for most of yesterday afternoon and evening but at least I didn't feel the itch or pain while I was asleep so that's ok, right?
Then last night I woke up in the middle of the night because the tip of my thumb on the wrapped arm was numb. I fell back asleep and woke up a few times because it was still numb. I tried to shift the wrapping a bit to relieve the pressure on whichever nerve was making my thumb numb but nothing worked - my thumb was still numb. I looked up numbness and this wrapping online and found that if the patient experiences tingling or numbness in the extremities after the wrapping, the wrapping should be removed right away and the doctor contacted.
I don't have a direct phone number for my physiotherapist and by the time I realized that the wrapping needed to come off, it was 4pm and the cancer center switch board was closed. I removed the wrapping anyways because I figured that it was the right thing to do. Now, six hours later, the tip of my thumb is still numb which is a little worrying. I hope that I can recover sensation in it before Monday. I have Raynaud's phenomenon in my hands and feet; could that have contributed to my numb thumb?
My forearm was also quite red and bumpy for a while but it seems to have settled down.
My physiotherapist did say that if this type of wrapping didn't work, we could do the kind of wrapping that they used to do. This other wrapping is changed daily and uses a different product so it might be better for me and my thumb. After this experience I'm wondering if it would be better to go a different wrapping route.
In other lymphedema treatment news, my hand and forearm were measured yesterday for a compression sleeve and glove. There has been no real change in the measurements in the one week but it's important that I have something for my travel in three weeks. The person checked and my measurements don't fit into the ready-to-wear measurements so my sleeve and glove need to be custom-made. It's going to take about two weeks for them to arrive so they'll be here in time for my trip.
Lymphedema and its treatment both suck. Wah!
Tuesday, March 19, 2013
One bandaged arm
My arm did get bandaged up at the physiotherapist's appointment yesterday. The wrapping stuff are new products by 3M that have only been around for about two years. The arm is wrapped twice: first with a foam comfort layer that's backed by that stretchy bandage that sticks to itself and then with a second layer of the stretchy bandage that sticks to itself.
The bandage is fairly comfortable except around my thumb. The edges of the bandages were cutting into the meat of my thumb. I trimmed the bandage a bit and now the bandages are cutting into the webbing between the thumb and first finger. I've been experimenting with gauze to pad the area a bit but it really hurts and I'm worried about getting a blister there. The point is to get rid of the lymph through my arm, not through a blister.
I'm also having some trouble bathing with this bandage. It's not supposed to get wet so I bought one of those waterproof cast protectors. The first time I used it I didn't do it properly so the bandage got wet. The second time I did use it properly but because I was sweating in the silicone, waterproof bag, the bandage got wet.
Wah! I like my baths but the baths don't work with the bandages.
Fortunately, the bandaging won't be forever. I take these bandages off (by which I mean I cut them off) on Thursday morning before the next appointment. The physiotherapist will do the massage on me and before I leave, another specialist will come and measure my arm so that I can be fitted for a compression sleeve. After that, my arm will be re-bandaged for the weekend. I spoke with the other specialist and she said that a sleeve will take up to three weeks to arrive.
The important thing is that I will have a compression sleeve before I leave for Philadelphia on April 12. I checked and the only way to get there in any reasonable time is to fly so that's what we're preparing my arm to do. Apparently if you're wearing bandages, security makes you cut them off because you might be hiding something there so I must have a compression sleeve.
Anyways, if the compression sleeve arrives within three weeks, I only have to be bandaged for that long. I think I can live with that (although don't be surprised if I whine about it).
The bandage is fairly comfortable except around my thumb. The edges of the bandages were cutting into the meat of my thumb. I trimmed the bandage a bit and now the bandages are cutting into the webbing between the thumb and first finger. I've been experimenting with gauze to pad the area a bit but it really hurts and I'm worried about getting a blister there. The point is to get rid of the lymph through my arm, not through a blister.
I'm also having some trouble bathing with this bandage. It's not supposed to get wet so I bought one of those waterproof cast protectors. The first time I used it I didn't do it properly so the bandage got wet. The second time I did use it properly but because I was sweating in the silicone, waterproof bag, the bandage got wet.
Wah! I like my baths but the baths don't work with the bandages.
Fortunately, the bandaging won't be forever. I take these bandages off (by which I mean I cut them off) on Thursday morning before the next appointment. The physiotherapist will do the massage on me and before I leave, another specialist will come and measure my arm so that I can be fitted for a compression sleeve. After that, my arm will be re-bandaged for the weekend. I spoke with the other specialist and she said that a sleeve will take up to three weeks to arrive.
The important thing is that I will have a compression sleeve before I leave for Philadelphia on April 12. I checked and the only way to get there in any reasonable time is to fly so that's what we're preparing my arm to do. Apparently if you're wearing bandages, security makes you cut them off because you might be hiding something there so I must have a compression sleeve.
Anyways, if the compression sleeve arrives within three weeks, I only have to be bandaged for that long. I think I can live with that (although don't be surprised if I whine about it).
Saturday, March 16, 2013
More on the lymphatic massage
I think I remember now that the physiotherapist asked me to wear loose clothes this coming Monday because she's going to try bandaging my arm after giving me the lymphatic massage. In that case, it would only stay on until Thursday. Either way, I'll wear a top (or combination of tops - I usually wear a t-shirt and sweater combination) with loose-fitting sleeves.
The physiotherapist told me that the fluid under the skin contains cellular waste products and that the lymphatic massage will help those waste products to be filtered out and cleared from the body. It's important to drink lots of water to help this stuff be processed. I did some research and it seems that some people get lymphatic massages to clear the body of toxins (although they really mean cellular waste products and not external toxins).
Anyways, these waste products and the extra fluid end up being filtered through the kidneys and liver. Therefore, my physiotherapist warned me that I might feel a bit nauseous or off my food and that there might be an increase in sweat, urine, or bowel movements. She also warned me that the cellular waste products can change the smell of those secretions and excretions.
She was right on all counts - everything she described, I felt or experienced. I also felt that pain in my right side that I keep thinking is my liver but is most likely my bowel which I figure was also related to the side effects of the lymphatic massage. All of these things together tell me that the lymphatic massage definitely had some effect.
I'm feeling a bit better this evening even though I'm still off my food. I'll eat food but I won't seek it out and I'm not getting exciting about it. Maybe that's a good thing?
I've been doing the exercises that I've been given and so far I've only had problems with one of them. In that one, I lie flat on my back, raise my bent knee, grasp my shin, and bounce the knee back towards my chest using only my hips and not my back. The ball of my femur is too big for the hip socket which greatly reduces my flexibility and this exercise strains the limits of what little flexibility I have. I'll talk to my physiotherapist on Monday about changing that exercise to account for my hips.
The physiotherapist told me that the fluid under the skin contains cellular waste products and that the lymphatic massage will help those waste products to be filtered out and cleared from the body. It's important to drink lots of water to help this stuff be processed. I did some research and it seems that some people get lymphatic massages to clear the body of toxins (although they really mean cellular waste products and not external toxins).
Anyways, these waste products and the extra fluid end up being filtered through the kidneys and liver. Therefore, my physiotherapist warned me that I might feel a bit nauseous or off my food and that there might be an increase in sweat, urine, or bowel movements. She also warned me that the cellular waste products can change the smell of those secretions and excretions.
She was right on all counts - everything she described, I felt or experienced. I also felt that pain in my right side that I keep thinking is my liver but is most likely my bowel which I figure was also related to the side effects of the lymphatic massage. All of these things together tell me that the lymphatic massage definitely had some effect.
I'm feeling a bit better this evening even though I'm still off my food. I'll eat food but I won't seek it out and I'm not getting exciting about it. Maybe that's a good thing?
I've been doing the exercises that I've been given and so far I've only had problems with one of them. In that one, I lie flat on my back, raise my bent knee, grasp my shin, and bounce the knee back towards my chest using only my hips and not my back. The ball of my femur is too big for the hip socket which greatly reduces my flexibility and this exercise strains the limits of what little flexibility I have. I'll talk to my physiotherapist on Monday about changing that exercise to account for my hips.
Thursday, March 14, 2013
Lymphedema physiotherapist appointment
I saw the physiotherapist today. She measured my arms every 20cm up the arm starting 40cm from the tip of my longest finger to see whether and how much lymphedema was there: anything more than 2cm on the arm is considered a significant amount. Also, the dominant hand and arm are generally larger than the non-dominant side. I think when I had it before there was only about 1cm of swelling.
I'm right-handed and the left hand and arm have the lymphedema. My lower forearm, upper forearm, ower bicep, and upper bicep are 1.5cm, 2.0cm, and 1.5cm, and 1.0cm larger than the right side. My left hand is 0.5cm larger than the right hand which is significant for it being a non-dominant hand. So I have lymphedema and it's a significant amount.
She explained that between the muscle or fat and skin is a space that fills with fluid via the arteries and capillaries due to the pumping of the heart. There are lymphatic vessels in that space that collect that fluid, after which it's sent back through lymph nodes to filter out waste products. The whole system is divided into four quadrants: right and left sides of the body and above and below the waist.
In my case, the fluid is blocked in most of the upper left quadrant due to a combination of factors. There are the lymph nodes that were taken out in my underarm when I had the primary cancer, and then the are the mediastinal lymph nodes that were taken out when we found out I had sarcoidosis, and then there's the area that was irradiated as part of my primary treatment, and then there's the morphea which has tightened the skin. All of that together means that the lymph channels are damaged or blocked and the skin is also damaged and tight so the fluid doesn't move.
Because that whole quadrant is blocked, normally we'd just move the fluid over to the other side. However, the missing mediastinal nodes make that difficult as there aren't as many channels available. So instead we have to move the fluid to the lower left quadrant which is a bit more difficult.
She did some lymphatic massage on me which basically pushes the fluid under the skin around and it definitely felt better afterwards. This kind of massage is very different from muscle massage; she described it as standing in a pool and making ripples that go to the other end of the pool. It's very slow and steady and relaxing. She's given me exercises to do at home that are supposed to stimulate the lymph system and fluid flow that are also supposed to be done in a slow, smooth, relaxing way.
I'll be seeing her on Monday and Thursday and during those visits we're going to continue with lymphatic massage while I do the exercises at home. She wants to see how things go this way - apparently it's important to not to try to force the fluid to move too fast or it can bound back. Then on the following Monday I think she's going to try to bandage up the arm with the foam bandage stuff and that stretchy bandage stuff that sticks to itself. It'll stay on for four days.
She said that the sleeve and gauntlet that I had before definitely wouldn't work since things were so different and that I will be needing a new set. She wants to wait to see how things are doing before we order the garments to make sure that I get the right kind with the right kind of compression in the right places. When I do get the garments, apparently provincial insurance will cover 75% of the cost if I have a thing that says that I need to wear it every day for six months. She'll give me the thing that says that because it'll be true.
We also talked about my upcoming trip to Philadelphia April 13 and 14. She said that I'll definitely need to wear compression garments when I fly from now on. However, she's not sure that it'll be time to order the compression garments before I go. She might be able to bandage the arm because it gets left there for four days and that's long enough for the trip. Another option could be for me to take the train there.
So... that's it, I think.
I'm right-handed and the left hand and arm have the lymphedema. My lower forearm, upper forearm, ower bicep, and upper bicep are 1.5cm, 2.0cm, and 1.5cm, and 1.0cm larger than the right side. My left hand is 0.5cm larger than the right hand which is significant for it being a non-dominant hand. So I have lymphedema and it's a significant amount.
She explained that between the muscle or fat and skin is a space that fills with fluid via the arteries and capillaries due to the pumping of the heart. There are lymphatic vessels in that space that collect that fluid, after which it's sent back through lymph nodes to filter out waste products. The whole system is divided into four quadrants: right and left sides of the body and above and below the waist.
In my case, the fluid is blocked in most of the upper left quadrant due to a combination of factors. There are the lymph nodes that were taken out in my underarm when I had the primary cancer, and then the are the mediastinal lymph nodes that were taken out when we found out I had sarcoidosis, and then there's the area that was irradiated as part of my primary treatment, and then there's the morphea which has tightened the skin. All of that together means that the lymph channels are damaged or blocked and the skin is also damaged and tight so the fluid doesn't move.
Because that whole quadrant is blocked, normally we'd just move the fluid over to the other side. However, the missing mediastinal nodes make that difficult as there aren't as many channels available. So instead we have to move the fluid to the lower left quadrant which is a bit more difficult.
She did some lymphatic massage on me which basically pushes the fluid under the skin around and it definitely felt better afterwards. This kind of massage is very different from muscle massage; she described it as standing in a pool and making ripples that go to the other end of the pool. It's very slow and steady and relaxing. She's given me exercises to do at home that are supposed to stimulate the lymph system and fluid flow that are also supposed to be done in a slow, smooth, relaxing way.
I'll be seeing her on Monday and Thursday and during those visits we're going to continue with lymphatic massage while I do the exercises at home. She wants to see how things go this way - apparently it's important to not to try to force the fluid to move too fast or it can bound back. Then on the following Monday I think she's going to try to bandage up the arm with the foam bandage stuff and that stretchy bandage stuff that sticks to itself. It'll stay on for four days.
She said that the sleeve and gauntlet that I had before definitely wouldn't work since things were so different and that I will be needing a new set. She wants to wait to see how things are doing before we order the garments to make sure that I get the right kind with the right kind of compression in the right places. When I do get the garments, apparently provincial insurance will cover 75% of the cost if I have a thing that says that I need to wear it every day for six months. She'll give me the thing that says that because it'll be true.
We also talked about my upcoming trip to Philadelphia April 13 and 14. She said that I'll definitely need to wear compression garments when I fly from now on. However, she's not sure that it'll be time to order the compression garments before I go. She might be able to bandage the arm because it gets left there for four days and that's long enough for the trip. Another option could be for me to take the train there.
So... that's it, I think.
Tuesday, March 12, 2013
Optometrist's appointment
I got my pupils dilated today at the optometrist's office, just like Gozer did when she saw the eye doctor. And just like Gozer, I have a small cataract in my right eye. We're like twins!
Seriously, I have a small cataract in my right eye. My optometrist had thought I had Mittendorf's spot in my left eye but the spot that just appeared in the right eye can't be the same thing (since it's a genetic malformation) so now she's thinking that the spot in the left eye is also a small cataract.
The spots aren't affecting my vision at this point so I can pretend they're not there. My ego is taking a bit of a blow because cataracts like this are a normal part of aging and are a sign that I'm getting older. I don't mind living more years if I didn't actually have to age.
Someday, if the cataracts get bad enough, the lenses can be taken out and replaced with artificial lenses.... which could also give me near-perfect vision. I don't want cataracts and I certainly don't want my vision to dim, but the possibility of having really good vision sets my heart a-fluttering with longing. Wouldn't it be awesome if I lived long enough to be able to see without thick lenses?
Seriously, I have a small cataract in my right eye. My optometrist had thought I had Mittendorf's spot in my left eye but the spot that just appeared in the right eye can't be the same thing (since it's a genetic malformation) so now she's thinking that the spot in the left eye is also a small cataract.
The spots aren't affecting my vision at this point so I can pretend they're not there. My ego is taking a bit of a blow because cataracts like this are a normal part of aging and are a sign that I'm getting older. I don't mind living more years if I didn't actually have to age.
Someday, if the cataracts get bad enough, the lenses can be taken out and replaced with artificial lenses.... which could also give me near-perfect vision. I don't want cataracts and I certainly don't want my vision to dim, but the possibility of having really good vision sets my heart a-fluttering with longing. Wouldn't it be awesome if I lived long enough to be able to see without thick lenses?
Monday, March 11, 2013
Appointment and the house
I received a call from the cancer center today with my appointment with the lymphedema physiotherapist. The appointment is scheduled for this Thursday at 11am. I'm thrilled that they got me in so quickly as my oncologist wasn't sure that they booked took urgent appointments.
Unfortunately, the hour-long physio appointment conflicts with my metalsmithing class. I'll still be able to go to class but I already had to leave early so I'll only be there for an hour or so. Of course I don't know whether I'll be up for doing any actual metalsmithing after the appointment so it's just as well I won't be there that long.
I need to leave early because Thursday afternoon is the only day that my cleaning person can come. I have a harder time than usual doing things around the house what with the lymphedema and she hasn't been here for five weeks so I'm willing to sacrifice some metalsmithing time for her to come. Of course it's March break so she'll have her two boys with her but I'm willing to put up with that just to get the house cleaned.
Five weeks ago she cancelled her appointment with me because her dad had just been admitted to hospital with pneumonia for the third time in four months. I understand how heartbreaking that can be so I asked her to let me know how things were going and that we'd reschedule when things settled down.
I heard nothing from her until just over three weeks ago, when she said she needed to cancel our appointment because she needed to see her dad. He'd been released from hospital but she wanted to visit him. The only time she offered to reschedule was on the weekend which didn't work for Ian at all - he's been busy travelling and with work and he wants to relax on the weekends.
At first the only other option she gave me was our next appointment which would mean that our house wouldn't be cleaned for six weeks and that's just not going to work. Therefore, I'm sacrificing my privacy and my time to get the house cleaned.
I am, however, starting to look for another cleaner. My cleaner is a nice person but I need someone a little more reliable. If you know of a good, reliable cleaner in my area, please let me know.
Unfortunately, the hour-long physio appointment conflicts with my metalsmithing class. I'll still be able to go to class but I already had to leave early so I'll only be there for an hour or so. Of course I don't know whether I'll be up for doing any actual metalsmithing after the appointment so it's just as well I won't be there that long.
I need to leave early because Thursday afternoon is the only day that my cleaning person can come. I have a harder time than usual doing things around the house what with the lymphedema and she hasn't been here for five weeks so I'm willing to sacrifice some metalsmithing time for her to come. Of course it's March break so she'll have her two boys with her but I'm willing to put up with that just to get the house cleaned.
Five weeks ago she cancelled her appointment with me because her dad had just been admitted to hospital with pneumonia for the third time in four months. I understand how heartbreaking that can be so I asked her to let me know how things were going and that we'd reschedule when things settled down.
I heard nothing from her until just over three weeks ago, when she said she needed to cancel our appointment because she needed to see her dad. He'd been released from hospital but she wanted to visit him. The only time she offered to reschedule was on the weekend which didn't work for Ian at all - he's been busy travelling and with work and he wants to relax on the weekends.
At first the only other option she gave me was our next appointment which would mean that our house wouldn't be cleaned for six weeks and that's just not going to work. Therefore, I'm sacrificing my privacy and my time to get the house cleaned.
I am, however, starting to look for another cleaner. My cleaner is a nice person but I need someone a little more reliable. If you know of a good, reliable cleaner in my area, please let me know.
Sunday, March 10, 2013
Oncologist appointment
I saw my oncologist this past Friday. The best news is that my tumour markers are still holding steady at a nice, low 34. Yay!
However, my oncologist was quite concerned about the lymphedema I've got. It's still in my left hand and arm and it hurts when I try to do certain things like put my hand flat on a hard surface and straighten my arm, or bring my hand to be perpendicular to my arm, or if something puts pressure on a part of my forearm.
Then on Wednesday I freaked out a bit because my underarm felt strange. If I raise my bent arm to shoulder level, the skin just at the front of the skin is all dimply. If I raise my hand above my head and straighten my arm as much as I can, there are three ropey things in my underarm.
My oncologist looked at all this and told me that my breast (this is the one with morphea) is full of lymph fluid, as is my side, and those ropey things are lymph vessels that are showing up because there's so much fluid in the whole area (this phenomenon is known as "cording"). Of great concern to her is the fact that my morphea breast is pinker than usual; apparently when fluid builds up and sits there like this, a cellulitis infection can show up and it starts with pink skin. I'm to watch for pain in the area and/or a fever and they show up, I'm to head to the emergency department immediately.
Apparently the cancer center has a physiotherapist who specializes in lymphedema and my oncologist is referring me to this person. She's hoping to get me in urgently because of the cording and swelling everywhere. She also wants to see me in four weeks instead of our usual three months because if we can't get the fluid moving we need to scan to figure out what's causing the blockage.
Hopefully I can get in to see the physiotherapist and we can get the fluid moving so that I can use my arm and hand again.
However, my oncologist was quite concerned about the lymphedema I've got. It's still in my left hand and arm and it hurts when I try to do certain things like put my hand flat on a hard surface and straighten my arm, or bring my hand to be perpendicular to my arm, or if something puts pressure on a part of my forearm.
Then on Wednesday I freaked out a bit because my underarm felt strange. If I raise my bent arm to shoulder level, the skin just at the front of the skin is all dimply. If I raise my hand above my head and straighten my arm as much as I can, there are three ropey things in my underarm.
My oncologist looked at all this and told me that my breast (this is the one with morphea) is full of lymph fluid, as is my side, and those ropey things are lymph vessels that are showing up because there's so much fluid in the whole area (this phenomenon is known as "cording"). Of great concern to her is the fact that my morphea breast is pinker than usual; apparently when fluid builds up and sits there like this, a cellulitis infection can show up and it starts with pink skin. I'm to watch for pain in the area and/or a fever and they show up, I'm to head to the emergency department immediately.
Apparently the cancer center has a physiotherapist who specializes in lymphedema and my oncologist is referring me to this person. She's hoping to get me in urgently because of the cording and swelling everywhere. She also wants to see me in four weeks instead of our usual three months because if we can't get the fluid moving we need to scan to figure out what's causing the blockage.
Hopefully I can get in to see the physiotherapist and we can get the fluid moving so that I can use my arm and hand again.
Tuesday, March 05, 2013
2013 Vanity Fair Oscar Party Red Carpet
The Academy Awards ceremony isn't the end of Oscar night - there are many parties that go on before, during, and after the ceremony. The two biggest parties are the Vanity Fair and the Elton John parties. Many of the celebrities who walked the Oscar red carpet attend one or both of these parties and change their outfits to attend. You know what that means - more outfits to evaluate!
Of the two, I think the Vanity Fair party is bigger and more interesting so I've chosen to evaluate the outfits worn on its "red" carpet.
I've gone through these outfits quite quickly and haven't written nearly as much as I had written for the recent red carpet posts. I've also taken a rather irreverent approach that I hope you'll like. Shall we take a look?
Of the two, I think the Vanity Fair party is bigger and more interesting so I've chosen to evaluate the outfits worn on its "red" carpet.
I've gone through these outfits quite quickly and haven't written nearly as much as I had written for the recent red carpet posts. I've also taken a rather irreverent approach that I hope you'll like. Shall we take a look?
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