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!
Friday, March 22, 2013
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?
Sunday, March 03, 2013
2013 Academy Awards Red Carpet
And here it is - finally! My red carpet post from the Academy Awards. I probably could have finished this sooner if I'd worked on it harder but after being so busy over the last couple of weeks I wanted to take it as easy as possible this week.
There are quite a few interesting dresses on this red carpet which should be no surprise because not everyone knows how to dress to flatter their figure or colouring. I know there are stylists to help but not everyone uses a stylist and not ever stylist knows what they're doing.
There wasn't that much black on this red carpet which was a welcome change. White and nude are still popular colours and there were also varying shades of blue and a few reds which I really liked. There was a lot of beaded and sequin fabrics and embellishments which of course I love :)
Anyways, enough of me blathering on. Let's look at the dresses!
There are quite a few interesting dresses on this red carpet which should be no surprise because not everyone knows how to dress to flatter their figure or colouring. I know there are stylists to help but not everyone uses a stylist and not ever stylist knows what they're doing.
There wasn't that much black on this red carpet which was a welcome change. White and nude are still popular colours and there were also varying shades of blue and a few reds which I really liked. There was a lot of beaded and sequin fabrics and embellishments which of course I love :)
Anyways, enough of me blathering on. Let's look at the dresses!
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