A few months ago I was interviewed for an article on lingering effects on life after (or in my case, with) cancer for Health To You magazine (h2u). h2u is a membership organization providing "benefits and resources that support your health and well-being." The article came out recently and I received a copy of the magazine from the author.
The article is called "A lifelong journey: How cancer survivors pick up the pieces." Although I was not featured on the cover, the table of contents on page two shows a picture of Bobka and I (he's nosing my face) as the draw for the article on page six. There is also a cute photo of me with both dogs at my section of the article. In this one, Pumpkin is licking my face.
The article itself features four people: a man with advanced melanoma that has spread into his bones and liver; a woman with advanced, squamous cell carcinoma on her tongue; a woman who developed lymphedema after her breast cancer surgery; and me. The man and I are the only people interviewed who have metastatic disease -- cancer that has spread outside the original area of diagnosis.
I was happy to talk with the author and she did a great job of listening to me and telling part of my story in this article.
Showing posts with label lymphedema. Show all posts
Showing posts with label lymphedema. Show all posts
Friday, October 22, 2010
Busy week
I have been so busy this week as I feel better and better on this chemo break.
On Tuesday I had my regular weekly meeting with the synagogue's senior staff.
Wednesday was the funeral of one of our shul's past presidents and longtime members. I also made sesame cold noodles for the meal of consolation. The family has one vegan and that mourner needed to eat as well.
Thursday was my monthly treatment with zometa, the bone-strengthening drug that I've been on for years. I went to Swedish's Ambulatory Infusion Center at the Cherry Hill campus this time and was happy to see two of the nurses who have been taking care of me for many years. Then I went to my support group, and last night there was a synagogue board meeting.
Today I will be interviewed by Q13 Fox as part of a group of young women with breast cancer. The same reporter did a story on us a few years ago and wanted to follow up now. I will post when I know the program will air.
My lymphedema is acting up again, and I have begun to wear my sleeve and glove during the day and my (new-ish) JoviPak arm sleeve at night. This may be a side effect of the Faslodex, or I may have increased edema for other reasons, but clearly my season of no garment during the day/compression at night is over for now.
On Tuesday I had my regular weekly meeting with the synagogue's senior staff.
Wednesday was the funeral of one of our shul's past presidents and longtime members. I also made sesame cold noodles for the meal of consolation. The family has one vegan and that mourner needed to eat as well.
Thursday was my monthly treatment with zometa, the bone-strengthening drug that I've been on for years. I went to Swedish's Ambulatory Infusion Center at the Cherry Hill campus this time and was happy to see two of the nurses who have been taking care of me for many years. Then I went to my support group, and last night there was a synagogue board meeting.
Today I will be interviewed by Q13 Fox as part of a group of young women with breast cancer. The same reporter did a story on us a few years ago and wanted to follow up now. I will post when I know the program will air.
My lymphedema is acting up again, and I have begun to wear my sleeve and glove during the day and my (new-ish) JoviPak arm sleeve at night. This may be a side effect of the Faslodex, or I may have increased edema for other reasons, but clearly my season of no garment during the day/compression at night is over for now.
Thursday, September 2, 2010
Rebound insomnia
Last night I had a little queasy tummy before bedtime, and eating a dry cracker didn't quite do the trick. I pulled out the Zofran (anti-nausea med) and re-read the label. Sure enough, "may cause drowsiness" is right there in the tiny print. I took one and got into bed thinking I would fall straight asleep. NOT.
Three hours later, I'd been tossing and turning regularly. I was too stubborn to take Ambien or Ativan, and wasn't sure how the meds would mix with each other anyway. At 3 AM Rik got up. At 6 AM the alarm clock went off. I really don't think I slept for more than 30 minutes at a time all night long.
This rebound insomnia comes whenever I've taken a sleep aid for too many nights in a row. I'd been taking Ativan since I've been bandaging my arm at night and it's hard for me to sleep that way. A few nights ago I decided to switch to Ambien when I felt the Ativan wasn't working as well.
Perhaps I should have combined the Decadron high from Monday's chemo with coming off sleep aids. This makes three nights in a row of not-best-quality sleep. I will try to take a nap this afternoon to keep my head on for a meeting tonight.
Oh, and I finally got my made-to-measure JoviPak arm sleeve. It's big and blue, with quilted channels to provide compression, has a special extra pad to control swelling in the back of my hand, and fits perfectly. It should help me sleep better while providing lymphedema compression.
Three hours later, I'd been tossing and turning regularly. I was too stubborn to take Ambien or Ativan, and wasn't sure how the meds would mix with each other anyway. At 3 AM Rik got up. At 6 AM the alarm clock went off. I really don't think I slept for more than 30 minutes at a time all night long.
This rebound insomnia comes whenever I've taken a sleep aid for too many nights in a row. I'd been taking Ativan since I've been bandaging my arm at night and it's hard for me to sleep that way. A few nights ago I decided to switch to Ambien when I felt the Ativan wasn't working as well.
Perhaps I should have combined the Decadron high from Monday's chemo with coming off sleep aids. This makes three nights in a row of not-best-quality sleep. I will try to take a nap this afternoon to keep my head on for a meeting tonight.
Oh, and I finally got my made-to-measure JoviPak arm sleeve. It's big and blue, with quilted channels to provide compression, has a special extra pad to control swelling in the back of my hand, and fits perfectly. It should help me sleep better while providing lymphedema compression.
Friday, August 13, 2010
Lymphedema
I was so worried that my lymphedema would flare up with the hand-foot syndrome and thankfully that has not been the case. I have been continuing to wear nothing during the day and to bandage at night.
A few weeks ago I ordered (through a medical garment provider) a Caresia bandage liner to wear at night instead of wrapping. It's a big blue padded garment, very soft, with foam and stitched channels like quilting that break up edema. Unfortunately, when it arrived it was too big in the upper arm and perhaps a tad too tight in the hand. So the provider, Donna Martin of Martin Medical, will return the Caresia liner and recommended I get a similar but custom made-to-measure garment from another manufacturer.
It's too bad. I was sleeping really well with the Caresia garment, and it was very easy to put on and take off. But because it provided no compression above the elbow, it's not a good choice for me. I hope Donna will be able to return the unusable garment, negotiate successfully with the insurance company to pay for the custom garment, and get a new one to me quickly.
Sunday, August 1, 2010
More pain
My pain from the hand-foot syndrome increased a lot over the weekend and so has the discomfort in my mouth and throat. After spending most of Saturday and Sunday on the sofa and taking close to the maximum daily dose of Vicodin, my plan is to try to get in to see the onc tomorrow if possible. Plus I will call the naturopath. Someone ought to take a throat culture and treat whatever is going on in my mouth, and I'm hoping to get moved onto different pain meds. My left hand is also puffy from lymphedema and the hand-foot thing and I am reluctant to bandage for fear of making the H-F syndrome worse. It's a vicious circle.
Of course my fear is that if I can't manage the side effects after only two rounds of Doxil, how will I handle four more treatments? Maybe I can persuade Dr G to reduce the dose or maybe he has other ideas.
Of course my fear is that if I can't manage the side effects after only two rounds of Doxil, how will I handle four more treatments? Maybe I can persuade Dr G to reduce the dose or maybe he has other ideas.
Monday, July 26, 2010
Hand-foot syndrome
The hand-foot syndrome seems to have stopped with stingy pain on the tips of the thumb and first two fingers of my left (dominant) hand, which is also the lymphedema hand. Vicodin is taking care of the pain and reducing it to manageable levels, but it still feels weird and tingly. I notice it when trying to open a jar, tear a piece of masking tape, or use other small motor skills.
The soles of my feet feel less red and painful. I actually walked the dog and stood for an hour yesterday at the Gilda's Club Dog Walk in Magnuson Park. There were many booths from vets, groomers, and other dog-oriented businesses, as well as an agility demonstration area and 1K and 3K walks. (We just wandered around the tent area.) N came with their dog and the five of us had a jolly time meeting other dogs and their people. Bobber was not particularly enthusiastic about other dogs but extremely well behaved at the $5 dog nail trim tent. He jumped straight into the arms of the groomer and made friends.
I am hoping that the B6 complex and glutamine powder are working to reduce or at least halt the hand-foot side effects. Last night I bandaged my hand for the first time in a week and it was not especially red in the morning despite the tight wrappings. I will go for more tonight and hope in this way to manage my lymphedema despite the hand-foot syndrome.
The soles of my feet feel less red and painful. I actually walked the dog and stood for an hour yesterday at the Gilda's Club Dog Walk in Magnuson Park. There were many booths from vets, groomers, and other dog-oriented businesses, as well as an agility demonstration area and 1K and 3K walks. (We just wandered around the tent area.) N came with their dog and the five of us had a jolly time meeting other dogs and their people. Bobber was not particularly enthusiastic about other dogs but extremely well behaved at the $5 dog nail trim tent. He jumped straight into the arms of the groomer and made friends.
I am hoping that the B6 complex and glutamine powder are working to reduce or at least halt the hand-foot side effects. Last night I bandaged my hand for the first time in a week and it was not especially red in the morning despite the tight wrappings. I will go for more tonight and hope in this way to manage my lymphedema despite the hand-foot syndrome.
Saturday, July 24, 2010
Much better
After a night and a day, the nausea has calmed down quite a bit. Although I spent most of Friday lying on the couch, I feel much better today. The anti-nausea meds made me very sleepy, so one three hour nap turned into a second one after I took a break to eat lunch.
We had been invited to have Shabbat dinner with friends and I felt well enough to go. It was a large crowd of about 12 people, with much laughter and telling of jokes and stories. Not to mention plenty of delicious food, including home-made vanilla ice cream. It was good for my soul to be with people only a few days after chemo.
The hand/foot syndrome is bugging me now. The sole of my right foot and the thumb of my left hand are tingly and just at the edge of painful. At the naturopath's and oncologist's suggestion, I started taking vitamin B6 supplements and have increased the amount of glutamine powder. (I was measuring inaccurately. One of my teaspoons holds two actual teaspoons.) I hope this is as bad as it gets, because I really need to address the lymphedema issue again. After almost a week of doing nothing, my left hand and arm are okay but would benefit from bandaging at night.
Today is supposed to be warm and sunny and I look forward to catching up on a good book and taking it easy!
We had been invited to have Shabbat dinner with friends and I felt well enough to go. It was a large crowd of about 12 people, with much laughter and telling of jokes and stories. Not to mention plenty of delicious food, including home-made vanilla ice cream. It was good for my soul to be with people only a few days after chemo.
The hand/foot syndrome is bugging me now. The sole of my right foot and the thumb of my left hand are tingly and just at the edge of painful. At the naturopath's and oncologist's suggestion, I started taking vitamin B6 supplements and have increased the amount of glutamine powder. (I was measuring inaccurately. One of my teaspoons holds two actual teaspoons.) I hope this is as bad as it gets, because I really need to address the lymphedema issue again. After almost a week of doing nothing, my left hand and arm are okay but would benefit from bandaging at night.
Today is supposed to be warm and sunny and I look forward to catching up on a good book and taking it easy!
Wednesday, June 30, 2010
Doxil day 3
Although I really overdid it yesterday, I am satisfied with the way I feel so far on Doxil. The Emend has successfully prevented any nausea. (I took the last pill today.) I'm experiencing a little tingling in my right palm, a possible early warning of hand-foot syndrome, and have called the naturopath to ask about taking vitamin B6 pyridoxine to treat and/or prevent this from worsening. I am a touch paranoid about getting hand-foot syndrome in my left arm due to the potential impact on my lymphedema.
The orthopedist said yesterday that I had increased extension in my left arm from 50 degrees to 35 degrees, a significant improvement. We don't know if this is due to sleeping with the plastic brace gizmo for the past three weeks; NOT wearing it on Monday night with the lymphedema bandaging as part of hand-foot syndrome prevention; or the 8 mg of Decadron steroids I received on Monday as a chemo pre-med. Evidently steroids have some positive affect on joint issues. At any rate, Dr W is allowing me to stay out of the brace for two weeks to see if I continue to improve.
I wish I could say I slept better without it, but at least I wasn't forced by the gizmo to extend my arm as straight as possible all night long. I still awoke several times with severe hot flashes, the kind that leave sweat standing on my head and neck. And having Bobka's furry dog butt pressed up against my back may not have helped. But he is so cuddly.
The orthopedist said yesterday that I had increased extension in my left arm from 50 degrees to 35 degrees, a significant improvement. We don't know if this is due to sleeping with the plastic brace gizmo for the past three weeks; NOT wearing it on Monday night with the lymphedema bandaging as part of hand-foot syndrome prevention; or the 8 mg of Decadron steroids I received on Monday as a chemo pre-med. Evidently steroids have some positive affect on joint issues. At any rate, Dr W is allowing me to stay out of the brace for two weeks to see if I continue to improve.
I wish I could say I slept better without it, but at least I wasn't forced by the gizmo to extend my arm as straight as possible all night long. I still awoke several times with severe hot flashes, the kind that leave sweat standing on my head and neck. And having Bobka's furry dog butt pressed up against my back may not have helped. But he is so cuddly.
Monday, June 28, 2010
First Doxil
Today I received my first treatment of Doxil (doxorubicin). First they gave me a new anti-nausea drug called Emend (given by IV), then i took Decadron (a steroid) and Ativan (for anxiety) orally. Then they finally set up the Doxil. Two chemo nurses sat with me to monitor how well I reacted and to make sure there were no problems. They gave it very slowly at first, then began increasing the speed. It took about 90 minutes - two hours for the whole infusion.
Doxil is a bright peach color, or as one nurse put it, exactly the shade of peach Jello. I don't eat too much Jello but I liked her softer imagery.
I felt quite chatty, especially compared with my morose behavior of the past few days. Either the Zoloft (anti-depressant( is kicking in quickly, or the steroids gave me just enough lift. D and C came to visit and I was able to have good interactive conversations with them both. D called me "perky." Either way, I rose to the occasion and provided the nurses with information they needed.
One bit was about the interaction of lymphedema with hand-foot syndrome. Evidently, if you get this, it comes on for a few days immediately after treatment and then eases. You can help prevent it by taking tepid showers; not using knives or tools; not kneeling or leaning on your arms. So far none of the providers recalls treating anyone with hand-foot syndrome who also has lymphedema. I have left a message with my physical therapist asking about her experience and I'm sure she will call back if she has a solution to offer.
Meanwhile we have decided that for these first three or so days post-Doxil, I will cease all lymphedema management to avoid putting undue pressure on my palms, and then return to night-time bandaging more loosely (if I can do this). At least I have a plan.
We came home with two prescriptions: Emend is given via IV on treatment day, and then via oral pill on each of the next two days. I have oral Zofran to manage additional nausea, should I experience any. And despite his not wanting to order me additional Ativan last week, Dr G wrote a new scrip for Ativan today, so I am covered for both anxiety and nausea.
It all went very smoothly. I was surprised that my counts were high enough to permit starting this treatment, but Dr G thinks it's best to start asap and he's the boss of my cancer. And last Thursday he said in plain words, "Your cancer is going to get better."
Doxil is a bright peach color, or as one nurse put it, exactly the shade of peach Jello. I don't eat too much Jello but I liked her softer imagery.
I felt quite chatty, especially compared with my morose behavior of the past few days. Either the Zoloft (anti-depressant( is kicking in quickly, or the steroids gave me just enough lift. D and C came to visit and I was able to have good interactive conversations with them both. D called me "perky." Either way, I rose to the occasion and provided the nurses with information they needed.
One bit was about the interaction of lymphedema with hand-foot syndrome. Evidently, if you get this, it comes on for a few days immediately after treatment and then eases. You can help prevent it by taking tepid showers; not using knives or tools; not kneeling or leaning on your arms. So far none of the providers recalls treating anyone with hand-foot syndrome who also has lymphedema. I have left a message with my physical therapist asking about her experience and I'm sure she will call back if she has a solution to offer.
Meanwhile we have decided that for these first three or so days post-Doxil, I will cease all lymphedema management to avoid putting undue pressure on my palms, and then return to night-time bandaging more loosely (if I can do this). At least I have a plan.
We came home with two prescriptions: Emend is given via IV on treatment day, and then via oral pill on each of the next two days. I have oral Zofran to manage additional nausea, should I experience any. And despite his not wanting to order me additional Ativan last week, Dr G wrote a new scrip for Ativan today, so I am covered for both anxiety and nausea.
It all went very smoothly. I was surprised that my counts were high enough to permit starting this treatment, but Dr G thinks it's best to start asap and he's the boss of my cancer. And last Thursday he said in plain words, "Your cancer is going to get better."
Tuesday, June 22, 2010
What's new
I was reminded today by a good friend that I haven't posted here in a few days. Things are generally okay but when piled together, I find I am in need of professional support.
1. Treatment with Abraxane continues to be very tolerable with minimal side effects. I have a CT scan tomorrow (and get the results on Thursday) which should indicate any response so far. Dr. G's plan is to treat me until he sees a response, then add two more months. I think that puts us at re-scanning in three months, getting the hoped-for response, and maybe ending treatment in November. You can see how so many months of chemo appears daunting to me.
2. Lymphedema continues to bug me in the same way -- too much edema in the hand, which is exacerbated by wearing the sleeve and glove. I've been taking a psychological break by not wearing anything during the day, and wrapping at night. This has gone on for about a week. I was measured for new custom sleeves last week. This new brand is supposed to be worn with a glove of the same brand; together they presumably put less compression on the wrist. A regular sleeve and glove, when worn together as appropriate, put MORE pressure on the wrist, thus giving the potential to increase edema in the hand by forcing more fluid there. More stress from this.
3. The left elbow continues to be stuck at about 40 degrees of extension. Even after wearing the black plastic brace every night for two weeks, over my lymphedema bandaging, I still have only 40 degrees of extension. My therapist worked with me to position the brace in a more effective spot on my arm, which may result in additional extension. Or not. I see the orthopedist next week. I do not sleep well at night while I wear this gizmo and yet it seems to be the only thing that will return full extension to my elbow joint. Again, more stress.
4. Pumpkin's death continues to hit both of us hard. He pops into mind at odd moments. It's hard to close my eyes and not visualize him looking back over his shoulder to see where I am. Having Bobka helps a lot but still...
5. Eating the low carb/low sugar diet that Dr. G recommended is very fatiguing. I am tired of having to think about every bite, having to plan my carbs each day. Yesterday after my low carb breakfast of cottage cheese, fruit and a latte, I was hungry again at 10 AM. A coffee and half a piroshky helped, as did the (rather dry) tuna sandwich later supplied by the Cancer Institute. I didn't eat dinner last night (read on). Today I ate bread at breakfast, which pretty much consumes my carbs for the rest of the day. But at least I felt full.
I feel so overwhelmed by all that I am managing that last week I decided to seek professional help. I had lined up an appointment with one of the two psychiatrists associated with Swedish's Cancer Institute only to discover that neither of them is part of my mental health benefit network. I found this out yesterday, after spending six hours at the Cancer Institute, and was given one name, in all of Seattle, of a psychiatrist who specializes in treating people with chronic illnesses. He has yet to return my phone message from yesterday. I feel I am in serious need of anti-depressants but would prefer this kind of drug to be managed by a mental health professional rather than my oncologist or even my primary care doc, who is not in this week anyway.
When things are too much for me, my preferred method of coping is to go to sleep. I got into bed at 3 PM, with instructions to Rik to wake me if the one shrink called. I did get up a couple of times, but basically I self-medicated and spent 18 hours in bed. I woke up this morning, not exactly refreshed, but feeling more ready to take on a new day. That lasted until now, when I started writing this post.
Long story short, if you don't see a new post from me, it doesn't necessarily mean all is bad. In the past week I also chaired my first meeting of the synagogue board as president; went shopping for makeup with a friend; and laughed through an animated movie. In coming weeks we may go out of town. I appreciate that you all care and I promise will keep up on my blogging as much as my energy permits.
1. Treatment with Abraxane continues to be very tolerable with minimal side effects. I have a CT scan tomorrow (and get the results on Thursday) which should indicate any response so far. Dr. G's plan is to treat me until he sees a response, then add two more months. I think that puts us at re-scanning in three months, getting the hoped-for response, and maybe ending treatment in November. You can see how so many months of chemo appears daunting to me.
2. Lymphedema continues to bug me in the same way -- too much edema in the hand, which is exacerbated by wearing the sleeve and glove. I've been taking a psychological break by not wearing anything during the day, and wrapping at night. This has gone on for about a week. I was measured for new custom sleeves last week. This new brand is supposed to be worn with a glove of the same brand; together they presumably put less compression on the wrist. A regular sleeve and glove, when worn together as appropriate, put MORE pressure on the wrist, thus giving the potential to increase edema in the hand by forcing more fluid there. More stress from this.
3. The left elbow continues to be stuck at about 40 degrees of extension. Even after wearing the black plastic brace every night for two weeks, over my lymphedema bandaging, I still have only 40 degrees of extension. My therapist worked with me to position the brace in a more effective spot on my arm, which may result in additional extension. Or not. I see the orthopedist next week. I do not sleep well at night while I wear this gizmo and yet it seems to be the only thing that will return full extension to my elbow joint. Again, more stress.
4. Pumpkin's death continues to hit both of us hard. He pops into mind at odd moments. It's hard to close my eyes and not visualize him looking back over his shoulder to see where I am. Having Bobka helps a lot but still...
5. Eating the low carb/low sugar diet that Dr. G recommended is very fatiguing. I am tired of having to think about every bite, having to plan my carbs each day. Yesterday after my low carb breakfast of cottage cheese, fruit and a latte, I was hungry again at 10 AM. A coffee and half a piroshky helped, as did the (rather dry) tuna sandwich later supplied by the Cancer Institute. I didn't eat dinner last night (read on). Today I ate bread at breakfast, which pretty much consumes my carbs for the rest of the day. But at least I felt full.
I feel so overwhelmed by all that I am managing that last week I decided to seek professional help. I had lined up an appointment with one of the two psychiatrists associated with Swedish's Cancer Institute only to discover that neither of them is part of my mental health benefit network. I found this out yesterday, after spending six hours at the Cancer Institute, and was given one name, in all of Seattle, of a psychiatrist who specializes in treating people with chronic illnesses. He has yet to return my phone message from yesterday. I feel I am in serious need of anti-depressants but would prefer this kind of drug to be managed by a mental health professional rather than my oncologist or even my primary care doc, who is not in this week anyway.
When things are too much for me, my preferred method of coping is to go to sleep. I got into bed at 3 PM, with instructions to Rik to wake me if the one shrink called. I did get up a couple of times, but basically I self-medicated and spent 18 hours in bed. I woke up this morning, not exactly refreshed, but feeling more ready to take on a new day. That lasted until now, when I started writing this post.
Long story short, if you don't see a new post from me, it doesn't necessarily mean all is bad. In the past week I also chaired my first meeting of the synagogue board as president; went shopping for makeup with a friend; and laughed through an animated movie. In coming weeks we may go out of town. I appreciate that you all care and I promise will keep up on my blogging as much as my energy permits.
Monday, June 14, 2010
Down and up and down and up and down
The past few days have felt like being on an out-of-control elevator: down and up and down and up and down again.
Thursday
The lymphedema therapist listend to me kvetch about my continued frustration with lack of elbow response and edema issues and recommended I choose not wearing compression garments either for a couple of days or nights. I chose daytime and went without a sleeve and glove for the remainder of Thursday, Friday and Saturday. This was an UP.
Friday
Because I had a naked arm (one of only a few occasions in the past eleven years), I overdid things. I took the dog to the vet, had a morning meeting, went to my yoga class, ate a quick lunch, bought groceries, picked up Rik and got the dry-cleaning. By the time we came home I was prostrated with exhaustion from running around for more than six hours straight. I immediately went to the sofa but was unable to sleep. I also couldn't move, so there I lay until evening. We ate a bad frozen pizza from Trader Joe's for dinner, and Rik went back to school for a meeting. DOWN DOWN DOWN.
Saturday
I woke up feeling refreshed enough to go to synagogue. (I am also constitutionally incapable of being in the house for 24 hours.) I cam home and despite the bright, sunny, warm day, again had to lie down but was unable to nap. My arm began to show not having been in a daytime compression garment for two days. DOWN.
Sunday
I put on the compression sleeve without the glove in hopes that the sleeve alone would be enough. Went to the grocery store to pick up a pie for Rik's 50th birthday. UP. Tried to pull some weeds from the yard -- couldn't. Stupid elbow! DOWN. Decided to accomplish something within my capabilities and did some ironing. Definitely UP. Put out pie, bubbly and freshly made lemonade for our friends. UP.
Not five minutes after the first people arrived, Pumpkin came down on his bad left rear leg and yelped. HUGE DOWN. We called the vet, they told us about the nearby emergency clinic. In the meantime more people are arriving and everyone has to know what's happened. In this barely controlled chaos, N intervened, suggested we celebrate Rik's birthday by toasting him and eating the pie; we could always go to the emergency clinic later if Pumpkin didn't improve. N sat on the chaise outdoors with Pumpkin on her lap, where he relaxed and we began to as well. After toasting Rik, eating strawberry-rhubarb pie and vanilla ice cream, we all felt better. More UP.
Later, after everyone had left, N came back with some doggy anti-inflammatories and Pumpkin ate one with his dinner. He finally relaxed enough to sleep. I wrapped my arm (my hand was very puffy from being in the sleeve but no glove all day) and was very cranky from all the stress. DOWN. Tried to nap, again couldn't sleep but couldn't move from the sofa. DOWN.
Rik ordered Chinese food for dinner but didn't realize the restaurant had given us someone else's order. Instead of tea-smoked duck and steamed vegetables with rice cakes. we received two containers of unidentifiable fried food which were covered in chili peppers, noodles (but no vegetables) and white rice. Is this how the rest of America eats? DOWN. One container appeared to hold pork, the other perhaps fish. I was tired and hungry and disappointed but not energetic enough to insist Rik return and get our correct order. He ate the noodles and fish. Since I'm eating a low carb diet and had already had pie and ice cream, noodles were out for me and the "fish" was inedibly spicy, even for me. Rik offered to make me something, but I had already eaten eggs that morning. I tried but could not summon the energy to even open the jar of peanut butter. DOWN DOWN DOWN DOWN.
I gave up and went to bed. After dropping the pills on the floor twice and roaring with rage and frustration, I took a sleeping pill and some ativan and pulled the covers over my head at 7 PM. DOWN.
Monday - Rik's 50th birthday
I slept until 5 AM with brief lucid periods when I heard Rik bring Pumpkin in the bedroom and talk on the phone. I never did hear him come to bed.
Chemo went fine today. UP. I again tried to nap afterwards but couldn't sleep. Maybe I need to try a different location.
At 3:00 we took Pumpkin to the vet. He is still there, being sedated for an xray and given IV pain meds for an examination by the doctor to determine what's wrong. Apparently his knee is injured but that's all we know now. DOWN. More later.
Haopy birthday, Rik. What a way to celebrate.
Thursday
The lymphedema therapist listend to me kvetch about my continued frustration with lack of elbow response and edema issues and recommended I choose not wearing compression garments either for a couple of days or nights. I chose daytime and went without a sleeve and glove for the remainder of Thursday, Friday and Saturday. This was an UP.
Friday
Because I had a naked arm (one of only a few occasions in the past eleven years), I overdid things. I took the dog to the vet, had a morning meeting, went to my yoga class, ate a quick lunch, bought groceries, picked up Rik and got the dry-cleaning. By the time we came home I was prostrated with exhaustion from running around for more than six hours straight. I immediately went to the sofa but was unable to sleep. I also couldn't move, so there I lay until evening. We ate a bad frozen pizza from Trader Joe's for dinner, and Rik went back to school for a meeting. DOWN DOWN DOWN.
Saturday
I woke up feeling refreshed enough to go to synagogue. (I am also constitutionally incapable of being in the house for 24 hours.) I cam home and despite the bright, sunny, warm day, again had to lie down but was unable to nap. My arm began to show not having been in a daytime compression garment for two days. DOWN.
Sunday
I put on the compression sleeve without the glove in hopes that the sleeve alone would be enough. Went to the grocery store to pick up a pie for Rik's 50th birthday. UP. Tried to pull some weeds from the yard -- couldn't. Stupid elbow! DOWN. Decided to accomplish something within my capabilities and did some ironing. Definitely UP. Put out pie, bubbly and freshly made lemonade for our friends. UP.
Not five minutes after the first people arrived, Pumpkin came down on his bad left rear leg and yelped. HUGE DOWN. We called the vet, they told us about the nearby emergency clinic. In the meantime more people are arriving and everyone has to know what's happened. In this barely controlled chaos, N intervened, suggested we celebrate Rik's birthday by toasting him and eating the pie; we could always go to the emergency clinic later if Pumpkin didn't improve. N sat on the chaise outdoors with Pumpkin on her lap, where he relaxed and we began to as well. After toasting Rik, eating strawberry-rhubarb pie and vanilla ice cream, we all felt better. More UP.
Later, after everyone had left, N came back with some doggy anti-inflammatories and Pumpkin ate one with his dinner. He finally relaxed enough to sleep. I wrapped my arm (my hand was very puffy from being in the sleeve but no glove all day) and was very cranky from all the stress. DOWN. Tried to nap, again couldn't sleep but couldn't move from the sofa. DOWN.
Rik ordered Chinese food for dinner but didn't realize the restaurant had given us someone else's order. Instead of tea-smoked duck and steamed vegetables with rice cakes. we received two containers of unidentifiable fried food which were covered in chili peppers, noodles (but no vegetables) and white rice. Is this how the rest of America eats? DOWN. One container appeared to hold pork, the other perhaps fish. I was tired and hungry and disappointed but not energetic enough to insist Rik return and get our correct order. He ate the noodles and fish. Since I'm eating a low carb diet and had already had pie and ice cream, noodles were out for me and the "fish" was inedibly spicy, even for me. Rik offered to make me something, but I had already eaten eggs that morning. I tried but could not summon the energy to even open the jar of peanut butter. DOWN DOWN DOWN DOWN.
I gave up and went to bed. After dropping the pills on the floor twice and roaring with rage and frustration, I took a sleeping pill and some ativan and pulled the covers over my head at 7 PM. DOWN.
Monday - Rik's 50th birthday
I slept until 5 AM with brief lucid periods when I heard Rik bring Pumpkin in the bedroom and talk on the phone. I never did hear him come to bed.
Chemo went fine today. UP. I again tried to nap afterwards but couldn't sleep. Maybe I need to try a different location.
At 3:00 we took Pumpkin to the vet. He is still there, being sedated for an xray and given IV pain meds for an examination by the doctor to determine what's wrong. Apparently his knee is injured but that's all we know now. DOWN. More later.
Haopy birthday, Rik. What a way to celebrate.
Friday, June 4, 2010
A small fall
Yesterday after eating lunch with a friend I tried to get up from the bench I was sitting on. My left hand (in the glove) slipped out from under me and then my legs went flying. I landed on my left hip, may have knocked my left elbow, but didn't appear to do any damage to it. My friend helped me up and a waiter came to make sure I was okay.
For weeks now, in the back of my mind, I have worried what would happen if I fell again. Now I know. There's something satisfying about facing your fears.
After my original cancer and lymphedema diagnosis, I was petrified that I would have an emergency admission to the hospital and not be able to tell anyone about the lymphedema. Then I fell and broke my leg and the first thing I said to Rik (after "Call 911!") was, "Go get my bandages."
Now I have faced the fear of falling and it wasn't as bad as I expected. My hip is pretty bruised, but some arnica gel will help that heal. My elbow seems to be fine. Thank God for the Zometa, which has strengthened my bones so that I can take two falls in nine weeks and not break anything.
For weeks now, in the back of my mind, I have worried what would happen if I fell again. Now I know. There's something satisfying about facing your fears.
After my original cancer and lymphedema diagnosis, I was petrified that I would have an emergency admission to the hospital and not be able to tell anyone about the lymphedema. Then I fell and broke my leg and the first thing I said to Rik (after "Call 911!") was, "Go get my bandages."
Now I have faced the fear of falling and it wasn't as bad as I expected. My hip is pretty bruised, but some arnica gel will help that heal. My elbow seems to be fine. Thank God for the Zometa, which has strengthened my bones so that I can take two falls in nine weeks and not break anything.
Too much stress
Today started out as a nightmare -- literally. I was dreaming and realized that in the dream I was wearing the wig. Uggh. Not the way I want to see myself.
This was followed by Bobka the dog needing to go out to pee at 5 AM, and my inability to fall back asleep after getting up to let him do so. Even taking half a vicodin didn't relax me enough to sleep again, possibly because I knew I had to get up at 7:00.
Rik woke me before he left the house and I struggled to get started, including a walking the dogs only up the block and back. I had to leave the house at 8:45 for a 9:20 appointment with the orthopedist.
I sat in bumper-to-bumper traffic in the I-5 express lane (!). There must have been something at the Seattle Center, because the traffic cleared up just after the Mercer Street exit. By this time I was already 10 minutes late to the doc and had made an (illegal) cell phone call from the car to let them know. Well, since I used the speaker phone I guess it was legal, but I still had to dial. No worries though; the traffic was completely stopped. It took me an hour to drive about five miles.
By the time I arrived at the office I was out of breath, experiencing high blood pressure and rapid heartbeat. A little ativan calmed me a bit, but I was seriously stressed.
Dr. Wagner the orthopod wants me to try wearing a plastic splint over my lymphedema bandaging at night. I had to approximate the bandaging by wrapping my arm with the cotton-like padding they use under casts. (It took five rolls.) The splint is a piece of black plastic, warmed in 150 degree water to make it pliable, and molded to the shape of my arm. It extends from just below my shoulder to halfway down my forearm. The intent is to relax my arm over the course of eight hours in bed.
Now I have yet another gizmo to deal with. At least I only have to wear it at night. After yesterday's tumble, I told Dr. Wagner that I was seriously maxed out with everything medical in my life and could not promise to be compliant in the daytime. He actually understood, part of what makes him such a great doctor.
I got home eventually and am about to crash on the sofa. Hopefully some extra sleep, followed by cooking a nice dinner for friends, will help me recover my equilibrium. Right now my perpetually half-full glass feels more empty than usual.
This was followed by Bobka the dog needing to go out to pee at 5 AM, and my inability to fall back asleep after getting up to let him do so. Even taking half a vicodin didn't relax me enough to sleep again, possibly because I knew I had to get up at 7:00.
Rik woke me before he left the house and I struggled to get started, including a walking the dogs only up the block and back. I had to leave the house at 8:45 for a 9:20 appointment with the orthopedist.
I sat in bumper-to-bumper traffic in the I-5 express lane (!). There must have been something at the Seattle Center, because the traffic cleared up just after the Mercer Street exit. By this time I was already 10 minutes late to the doc and had made an (illegal) cell phone call from the car to let them know. Well, since I used the speaker phone I guess it was legal, but I still had to dial. No worries though; the traffic was completely stopped. It took me an hour to drive about five miles.
By the time I arrived at the office I was out of breath, experiencing high blood pressure and rapid heartbeat. A little ativan calmed me a bit, but I was seriously stressed.
Dr. Wagner the orthopod wants me to try wearing a plastic splint over my lymphedema bandaging at night. I had to approximate the bandaging by wrapping my arm with the cotton-like padding they use under casts. (It took five rolls.) The splint is a piece of black plastic, warmed in 150 degree water to make it pliable, and molded to the shape of my arm. It extends from just below my shoulder to halfway down my forearm. The intent is to relax my arm over the course of eight hours in bed.
Now I have yet another gizmo to deal with. At least I only have to wear it at night. After yesterday's tumble, I told Dr. Wagner that I was seriously maxed out with everything medical in my life and could not promise to be compliant in the daytime. He actually understood, part of what makes him such a great doctor.
I got home eventually and am about to crash on the sofa. Hopefully some extra sleep, followed by cooking a nice dinner for friends, will help me recover my equilibrium. Right now my perpetually half-full glass feels more empty than usual.
Thursday, May 6, 2010
Lymphedema legislation
I just learned about House of Representatives legislation in the works to provide Medicare coverage of lymphedema diagnosis and treatment. Here's what I wrote to my Congressman, Jim McDermott. I hope you will consider taking action also.
To find and contact your Congressional representative, click here.
To read more about the mom whose son was born with primary lymphedema, and who started this bill, read this article.
To find and contact your Congressional representative, click here.
As an 11 year breast cancer survivor living with lymphedema, I sincerely hope that Rep. McDermott will support H.R. 4662: Lymphedema Diagnosis and Treatment Cost Saving Act of 2010.
Medicare and Medicaid do not currently pay for treatment of lymphedema, a life-long condition related to surgery for removal of lymph nodes. It is also congenital. HR 4662 would cover diagnosis, compression garments, and special physical therapy that people living with lymphedema require to maintain good health.
I've had metastatic breast cancer for 7 years, am now age 50 and hope to live long enough for my lymphedema treatment and garments to be covered by Medicare.
Given the large numbers of women diagnosed with breast cancer every year in our country, who will have a lifelong risk of developing lymphedema, this is an enormous hole in our health system. I hope Rep. McDermott will help rectify this lack.
To read more about the mom whose son was born with primary lymphedema, and who started this bill, read this article.
Saturday, May 1, 2010
Cleared to drive!
On Thursday I called Dr. W the orthopod with the question I forgot to ask when I saw him earlier in the week: when can I start driving again? On Friday his assistant called back with the good word that as long as I could grip the steering wheel safely, he thinks it is okay to drive while wearing the brace.
As it happens, a few months ago my physical therapist gave me a sheet of blue sticky stuff to wrap around items in order to make them easier to grip. I was concerned that I didn't have a good handle on the steering wheel while bandaged, and this stuff was supposed to do the trick. Rik and I attached a strip around the 10 AM and 2 PM points on the steering wheel this morning and off I went!
I sat behind the wheel and heaved a great sigh of relief to feel more independent after 5+ weeks of having to be driven everywhere. The drive to shul is short and familiar. I got the last parking spot in the lot. If one hadn't been available, I would have turned around to go home and Rik could have taken me back and dropped me off. I didn't feel quite ready to parallel park on my first outing.
I plan to continue to ask for rides to medical appointments this week, since I really don't want to parallel park, or park far away and have to walk unescorted for a distance. I am still nervous about falling, even though I have not begun to develop the peripheral neuropathy that can be associated with the abraxane. And of course I am holding my chemo mantra in mind: well tolerated, minimal side effects, very effective.
As it happens, a few months ago my physical therapist gave me a sheet of blue sticky stuff to wrap around items in order to make them easier to grip. I was concerned that I didn't have a good handle on the steering wheel while bandaged, and this stuff was supposed to do the trick. Rik and I attached a strip around the 10 AM and 2 PM points on the steering wheel this morning and off I went!
I sat behind the wheel and heaved a great sigh of relief to feel more independent after 5+ weeks of having to be driven everywhere. The drive to shul is short and familiar. I got the last parking spot in the lot. If one hadn't been available, I would have turned around to go home and Rik could have taken me back and dropped me off. I didn't feel quite ready to parallel park on my first outing.
I plan to continue to ask for rides to medical appointments this week, since I really don't want to parallel park, or park far away and have to walk unescorted for a distance. I am still nervous about falling, even though I have not begun to develop the peripheral neuropathy that can be associated with the abraxane. And of course I am holding my chemo mantra in mind: well tolerated, minimal side effects, very effective.
Wednesday, April 28, 2010
elbow update
i saw the orthopod yesterday and dr. w says my elbow is healing just as he expected. all the skin abrasions have cleared up, including the one that was most recently open. he set me some additional exercises and told me to return in three weeks. (i hope by then he will clear me to drive.)
the exercises include --
- raising my left hand to my mouth (i'm at the shoulder so far)
- with my upper arm on a table, lifting a can of soup as i bend my arm
- straightening my arm
- turning my hand palm up and down
i do 10 repetitions, four times a day.
dr. w also told me i could start getting out of the brace as much as i wanted as long as i am not too active. i can type without it, read, watch tv, even sleep. last night i took it off for about three hours and it felt great. that should help improve my lymphedema too. unfortunately i can't put the brace back on unassisted, so i can only remove it when i know rik is here to put it back on.
still, this is a step in the right direction!
the exercises include --
- raising my left hand to my mouth (i'm at the shoulder so far)
- with my upper arm on a table, lifting a can of soup as i bend my arm
- straightening my arm
- turning my hand palm up and down
i do 10 repetitions, four times a day.
dr. w also told me i could start getting out of the brace as much as i wanted as long as i am not too active. i can type without it, read, watch tv, even sleep. last night i took it off for about three hours and it felt great. that should help improve my lymphedema too. unfortunately i can't put the brace back on unassisted, so i can only remove it when i know rik is here to put it back on.
still, this is a step in the right direction!
Thursday, April 22, 2010
getting ready for chemo
i am spending the week seriously preparing for monday's chemo. you wouldn't believe the number of things that must be done before they shoot you up with the meds.
dentist
many chemos cause mouth sores and dental issues, so it's important to take care of dental business before starting treatment. thankfully i had an appointment last week and saw both the hygienist to have my teeth cleaned and the dentist. otherwise i'd be hoping they could squeeze me in at the last minute.
haircut
almost every chemo causes alopecia, or hair loss. chemotherapy destroys rapidly-dividing cells; tumors as well as hair and intestinal flora.
somehow women seem more impacted by this side effect, perhaps because it's more socially acceptable for a man to be bald, even under a hat or cap. you also lose your eyebrows, eyelashes and other body hair.
so on tuesday i managed to see my hairdresser, who did exactly what i asked: she gave me a haircut that is overall only about one inch long. i remember from the radiation to my skull that it felt less traumatic to lose short hair than long hair. i think i look like jamie lee curtis (without the grey).
wig
of course you can cover your bald head with scarves, caps and hats, but sometimes you just want to look as though you have hair. i went for a wig fitting to a place that only makes human hair wigs for (gasp!) $700. the owner is a lovely guy but didn't have a sample for me to try on and i can't envision spending that kind of money on any product sight unseen. it's unclear if my health insurance will cover a wig since it's not deemed to be "medically necessary." maybe if i get the doctor to call it a cranial prosthesis for chemotherapy hair loss pacificare will cover it.
tomorrow i hope to go to the local american cancer society office to see what they have. acs has an online catalog too, and friends who are long out of treatment are searching through their boxes for some caps etc. i can borrow. if i'm going to be bald indefinitely, i want a wide selection of head coverings.
naturopath
i also saw my great naturopathic doctor at nw natural health who i asked for advice and support in keeping me strong during chemotherapy. since we have no way to know how i will respond to the chemo, or how long i will take it, dr. bufi is a very important part of the process. (for some reason i never saw him before taking the 5fu last year. if i had, i might not have ended up in the hospital for two weeks.)
after an hour of conversation and a look at my recent blood work and scalp mets tumor pathology report, dr. b prescribed several new supplements --
of course they sell these items in their office, which is the one thing i don't care for about seeing a naturopath: they almost always prescribe items they sell, thus making a profit on the sales as well as on seeing patient. but all naturopaths seem to do this. i am fortunate that pacificare does cover the services of my naturopath.
other stuff
i am still seeing both the lymphedema therapist and the elbow therapist, although i hope to combine both treatments with one provider. dr. w the orthood approved the lymphedema therapist to treat my elbow but didn't tell his therapy staff. hopefully that will all get worked out today and i can save on at least one copay.
sadly i haven't been able to get to my gilda's club support group in recent weeks. i've had to schedule too many appointments for the same day and time, plus i feel awkward asking for a ride to a two-hour meeting. but if i feel well next week, i have a ride lined up from a friend who was heading in that direction at that day/time anyway.
on top of all this i needed a pedicure. this is the one area of personal care that rik can't quite manage for me, and i certainly can't reach my own toenails with my left arm in a brace. so i went to a local nail salon where for $27 pus a tip they spent about 45 minutes pampering me with a warm foot soak, toenail and cuticle trim, pumice rub on calluses, lotion and foot massage.
now i have lovely orange-peach colored toenails! if only it would get warm enough outside to wear sandals.
dentist
many chemos cause mouth sores and dental issues, so it's important to take care of dental business before starting treatment. thankfully i had an appointment last week and saw both the hygienist to have my teeth cleaned and the dentist. otherwise i'd be hoping they could squeeze me in at the last minute.
haircut
almost every chemo causes alopecia, or hair loss. chemotherapy destroys rapidly-dividing cells; tumors as well as hair and intestinal flora.
somehow women seem more impacted by this side effect, perhaps because it's more socially acceptable for a man to be bald, even under a hat or cap. you also lose your eyebrows, eyelashes and other body hair.
so on tuesday i managed to see my hairdresser, who did exactly what i asked: she gave me a haircut that is overall only about one inch long. i remember from the radiation to my skull that it felt less traumatic to lose short hair than long hair. i think i look like jamie lee curtis (without the grey).
wig
of course you can cover your bald head with scarves, caps and hats, but sometimes you just want to look as though you have hair. i went for a wig fitting to a place that only makes human hair wigs for (gasp!) $700. the owner is a lovely guy but didn't have a sample for me to try on and i can't envision spending that kind of money on any product sight unseen. it's unclear if my health insurance will cover a wig since it's not deemed to be "medically necessary." maybe if i get the doctor to call it a cranial prosthesis for chemotherapy hair loss pacificare will cover it.
tomorrow i hope to go to the local american cancer society office to see what they have. acs has an online catalog too, and friends who are long out of treatment are searching through their boxes for some caps etc. i can borrow. if i'm going to be bald indefinitely, i want a wide selection of head coverings.
naturopath
i also saw my great naturopathic doctor at nw natural health who i asked for advice and support in keeping me strong during chemotherapy. since we have no way to know how i will respond to the chemo, or how long i will take it, dr. bufi is a very important part of the process. (for some reason i never saw him before taking the 5fu last year. if i had, i might not have ended up in the hospital for two weeks.)
after an hour of conversation and a look at my recent blood work and scalp mets tumor pathology report, dr. b prescribed several new supplements --
a digestive enzyme with each meal to make sure i get the most benefit from my foodi will continue on multivitamins and calcium magnesium 3:1 for bone health. he stopped the vitamin d supplement since the recent blood work showed a good level of vit. d in my system and the days are getting longer, meaning more sunshine.
l-glutamine powder (2 teaspoons twice a day mixed in water) to counteract and minimize the potential for peripheral neuropathy from the abraxane
b6 complex (for the same reason)
stress arrest (don't you love that name?) to reduce my level of general anxiety
of course they sell these items in their office, which is the one thing i don't care for about seeing a naturopath: they almost always prescribe items they sell, thus making a profit on the sales as well as on seeing patient. but all naturopaths seem to do this. i am fortunate that pacificare does cover the services of my naturopath.
other stuff
i am still seeing both the lymphedema therapist and the elbow therapist, although i hope to combine both treatments with one provider. dr. w the orthood approved the lymphedema therapist to treat my elbow but didn't tell his therapy staff. hopefully that will all get worked out today and i can save on at least one copay.
sadly i haven't been able to get to my gilda's club support group in recent weeks. i've had to schedule too many appointments for the same day and time, plus i feel awkward asking for a ride to a two-hour meeting. but if i feel well next week, i have a ride lined up from a friend who was heading in that direction at that day/time anyway.
on top of all this i needed a pedicure. this is the one area of personal care that rik can't quite manage for me, and i certainly can't reach my own toenails with my left arm in a brace. so i went to a local nail salon where for $27 pus a tip they spent about 45 minutes pampering me with a warm foot soak, toenail and cuticle trim, pumice rub on calluses, lotion and foot massage.
now i have lovely orange-peach colored toenails! if only it would get warm enough outside to wear sandals.
Friday, April 16, 2010
sore spots
yesterday morning we noticed three small skin abrasions on my left arm. it's probably from the brace rubbing against the sleeve rubbing against my skin, and complicated by the lymphedema. still, i can't risk a skin tear and infection. it could be life-threatening and put me in the hospital. so i called the physical therapist who recommended i see the orthopod for a brace adjustment. that's scheduled for later today.
today we saw five skin abrasions. the appointment is at 3 pm and i can barely wait to find out what the doc can do.
today we saw five skin abrasions. the appointment is at 3 pm and i can barely wait to find out what the doc can do.
Monday, April 12, 2010
the jointed brace
i saw the orthopod today and he was pleased enough at the way my elbow is healing that the nurse removed the splint and i got to scratch my skin for the first time in two weeks.
just removing the splint felt weird. my arm felt so naked! i had to place my left arm on a pillow and, supporting it with my right hand, walk to the xray room. then after the doc's exam, he had me lose the pillow and support just the hand while we walked over to the therapy room.
my arm hurt a bit and ached a bit more, like when you bang your funny bone and the "echoes" continue. i felt very fragile, especially when dr w told the therapist that my elbow was still unstable.
dr w assures me my edema doesn't seem to be any worse than anyone else's with the same injury. the therapist placed a stretchy tube of material over my arm. it provides minimal compression but seems to be a good first step. then she helped me put on my glove so that any edema didn't back into my hand. she helped me back into my zip-front top and then put this contraption on over it.
she told me the four buckles lock into place like ski boots do. since i don't ski, that meant nothing, but rik recognized the idea. there are two buckles above my elbow and two below, locking my arm into a 90 degree angle. in two weeks i will return for a checkup and to hopefully have the angle increased from 90 degrees to a wider angle. thus, incrementally over the next 4-6 weeks, my arm will be allowed to straighten out to its full length.
i will wear the brace 24 hours a day for the first week, even in the shower. (we'll continue to put a plastic garbage bag over it to keep it from getting wet.) i will be able to wash my arm gently with a cloth and put lotion on, an important part of lymphedema skin care. after a week, dr w wants me to try sitting on a bath bench and cradling my naked arm against my belly while showering. i am so thankful we re-did the bathroom last summer! the walk-in shower, second, hand-held shower head and teak bench have all made this unpleasant experience a bit easier.
i will wear the glove during the day and bandage at night to maintain compression in my hand.
from the doc we went to costco. look, when you need toilet paper, you need toilet paper! we also picked up fresh mushrooms, dried cherries, maple syrup, smoked salmon, tissues, vanilla, salty marcona almonds, dishwasher AND dishwashing liquid soap, "he" perfume and dye free laundry detergent, gassed up the car and each had a hot dog for lunch. i also found a cute purple cotton jacket-y thing that buttons up the front so i will have a third clothing option for the next six weeks.
because the brace weirded me out for the first few hours. i felt a bit like dr frankenstein's monster. after all this i did a little sleep therapy (i.e. took a long nap) and woke up more in touch with everything. by the end of the day i was able to wrap my brain around the concept. and of course rik has been very patient with me as i adapt to each new change.
tomorrow it's off to the dermatologist to have the bumps on my head biopsied. these days when asked what i do for a living, i answer: "i'm in health care management -- my own!"
just removing the splint felt weird. my arm felt so naked! i had to place my left arm on a pillow and, supporting it with my right hand, walk to the xray room. then after the doc's exam, he had me lose the pillow and support just the hand while we walked over to the therapy room.
my arm hurt a bit and ached a bit more, like when you bang your funny bone and the "echoes" continue. i felt very fragile, especially when dr w told the therapist that my elbow was still unstable.
dr w assures me my edema doesn't seem to be any worse than anyone else's with the same injury. the therapist placed a stretchy tube of material over my arm. it provides minimal compression but seems to be a good first step. then she helped me put on my glove so that any edema didn't back into my hand. she helped me back into my zip-front top and then put this contraption on over it.
she told me the four buckles lock into place like ski boots do. since i don't ski, that meant nothing, but rik recognized the idea. there are two buckles above my elbow and two below, locking my arm into a 90 degree angle. in two weeks i will return for a checkup and to hopefully have the angle increased from 90 degrees to a wider angle. thus, incrementally over the next 4-6 weeks, my arm will be allowed to straighten out to its full length.
i will wear the brace 24 hours a day for the first week, even in the shower. (we'll continue to put a plastic garbage bag over it to keep it from getting wet.) i will be able to wash my arm gently with a cloth and put lotion on, an important part of lymphedema skin care. after a week, dr w wants me to try sitting on a bath bench and cradling my naked arm against my belly while showering. i am so thankful we re-did the bathroom last summer! the walk-in shower, second, hand-held shower head and teak bench have all made this unpleasant experience a bit easier.
i will wear the glove during the day and bandage at night to maintain compression in my hand.
from the doc we went to costco. look, when you need toilet paper, you need toilet paper! we also picked up fresh mushrooms, dried cherries, maple syrup, smoked salmon, tissues, vanilla, salty marcona almonds, dishwasher AND dishwashing liquid soap, "he" perfume and dye free laundry detergent, gassed up the car and each had a hot dog for lunch. i also found a cute purple cotton jacket-y thing that buttons up the front so i will have a third clothing option for the next six weeks.
because the brace weirded me out for the first few hours. i felt a bit like dr frankenstein's monster. after all this i did a little sleep therapy (i.e. took a long nap) and woke up more in touch with everything. by the end of the day i was able to wrap my brain around the concept. and of course rik has been very patient with me as i adapt to each new change.
tomorrow it's off to the dermatologist to have the bumps on my head biopsied. these days when asked what i do for a living, i answer: "i'm in health care management -- my own!"
Wednesday, April 7, 2010
pt report
i saw the physical therapist yesterday and when she measured my left hand, the swelling at the finger, across the knuckles and at the wrist was just about the same as when i started seeing her in february. this is good news in that it seems to indicate my hand is not swollen out of control by the elbow dislocation. of course, we have no idea what my arm is doing under the splint....
she did some mld massage and we scheduled more appointments for after i see the orthopod next week and he (hopefully) removes my splint.
she did some mld massage and we scheduled more appointments for after i see the orthopod next week and he (hopefully) removes my splint.
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