I think my hand may be beginning to improve. If you remember, I slept without the bandaging one night last week(?) and then felt I hadn't gotten enough support without the wrapping. Last night after a long day and a hard choir rehearsal, I felt I needed to get some fresh air on my skin so decided not to bandage before bed. This morning my hand seems okay. I am actually not wearing the glove yet and it's already 11 AM.
Could this be an indicator that things are beginning to return to normal? If I can alternate sleeping bandaged and unwrapped, if I don't have to wear the glove all day long but only most or even part of the day, if the new sleeves arrive quickly, maybe my hand and arm will be on the way to normal. The old normal, not a new normal, I hope.
Of course, every time I sleep unwrapped I don't take any ativan and then I get a little rebound insomnia, but what can you do? It's still more comfortable to lie awake in bed unwrapped than to bandage and try to sleep uncomfortably on drugs.
Now dealing with breast cancer for the fourth time since 1999
November 05, 2009
November 03, 2009
Enjoying the sun
We've had a couple of sunny days in Seattle lately. The mornings at least are bright and I love walking the dogs to get my daily dose of (external) vitamin D. Sadly I then focus on household stuff, errands etc. and haven't taken advantage of the less wet grass to continue to put the garden to bed. The strawberries still need to be weeded and mulched, the front beds are weedy and two of the raised beds could use a tarp cover since I didn't plant a cover crop in them.
On the plus side, Rik has been really good about yard work. He rescued the rest of the green tomatoes, which we hung over the kitchen window and are slowly ripening in the indoors heat. Not as tasty as summer-ripened fruit but a definite improvement over what's in the grocery stores now. I just don't eat tomatoes in the winter. Store tomatoes taste like cardboard.
The local farmers' market has closed for the season and I missed the last few Thursday shopping sessions. It's back to apples, pears and bananas for fruit and on to eating squash, greens and potatoes for veggies. The dogs love the canned pumpkin I've added to their diet to add bulk while they lose weight. They think the canned green beans are okay, but they LOVE the canned pumpkin. Did you know canned pumpkin is a seasonal item? I will have to stock my pantry up.
I must be in the mood to cook....
On the plus side, Rik has been really good about yard work. He rescued the rest of the green tomatoes, which we hung over the kitchen window and are slowly ripening in the indoors heat. Not as tasty as summer-ripened fruit but a definite improvement over what's in the grocery stores now. I just don't eat tomatoes in the winter. Store tomatoes taste like cardboard.
The local farmers' market has closed for the season and I missed the last few Thursday shopping sessions. It's back to apples, pears and bananas for fruit and on to eating squash, greens and potatoes for veggies. The dogs love the canned pumpkin I've added to their diet to add bulk while they lose weight. They think the canned green beans are okay, but they LOVE the canned pumpkin. Did you know canned pumpkin is a seasonal item? I will have to stock my pantry up.
I must be in the mood to cook....
November 02, 2009
I spoke too soon
My arm felt uncomfortable in the sleeve by late afternoon yesterday, so I am afraid I spoke too soon about no longer bandaging. I wrapped my arm again last night, perhaps a little too tight since I was worried about the after-effects of the night before. Things seem more normal today (at least, "normal" for the past eight weeks).
Wrapping too tight happens infrequently but when it does - ow! Fabric rubs against skin and leaves red marks (dangerous when you have lymphedema, can cause infection if they open). The finger wraps on my fourth finger were too tight last night and I felt as though the circulation was being cut off in my hand because of it.
I will adjust as I return to wrapping every night until I get the special, made-to-order new sleeves in a few weeks. And even taking ativan again didn't help me get better sleep with the bandaging too snug for comfort.
There must be a happy medium. I just have to find it.
Wrapping too tight happens infrequently but when it does - ow! Fabric rubs against skin and leaves red marks (dangerous when you have lymphedema, can cause infection if they open). The finger wraps on my fourth finger were too tight last night and I felt as though the circulation was being cut off in my hand because of it.
I will adjust as I return to wrapping every night until I get the special, made-to-order new sleeves in a few weeks. And even taking ativan again didn't help me get better sleep with the bandaging too snug for comfort.
There must be a happy medium. I just have to find it.
November 01, 2009
A night without bandaging
I gave myself a night without bandaging last night. My arm was stable when measured for a new sleeve last week, and I thought it was time to get off the ativan as well. As an anti-anxiety and sleep aid it's great, but when you take it every night for eight weeks, it becomes habituating.
After eight weeks of this craziness, I am so tired of sweating into the glove, feeling like my skin didn't breathe, and not being able to relax my hand.
I had the usual rebound insomnia after stopping the ativan and tossed and turned every hour all night long. I guess I got about three hours' sleep all together, and I predict a nap will be in my future this afternoon.
But this morning my arm seemed fine. Time will tell whether that is really the case and if I need to wrap again. I hope not, but you never know. One night without bandaging might set everything back again. However, I think it was a risk worth taking.
After eight weeks of this craziness, I am so tired of sweating into the glove, feeling like my skin didn't breathe, and not being able to relax my hand.
I had the usual rebound insomnia after stopping the ativan and tossed and turned every hour all night long. I guess I got about three hours' sleep all together, and I predict a nap will be in my future this afternoon.
But this morning my arm seemed fine. Time will tell whether that is really the case and if I need to wrap again. I hope not, but you never know. One night without bandaging might set everything back again. However, I think it was a risk worth taking.
October 30, 2009
Serendipity
Yesterday the stars were aligned for my errands. I decided to go downtown to get my driver's license renewed, after trying unsuccessfully to renew online and via the US Postal Service. The timing on this was important, since I also had to be at the hospital to get my zometa by 1 PM.
First karmic alignment: I found a parking space literally in front of the entrance to the DOL building at 1000 2nd Avenue. No matter that the entrance to the DOL office was around the corner. At least I didn't have to walk blocks in the rain.
Second karmic alignment: It stopped raining just as I pulled into the parking space.
Third karmic alignment: The reason I couldn't renew online or through the mail was because I literally needed a new license. The other types of renewals are for the sticker you place on your current license. And the photo they took wasn't so bad.
Fourth karmic alignment: I walked the two blocks to the doctor's office to try to get a flu shot since I had such a primo parking space.
Fifth karmic alignment: The doctor's office was having a flu clinic and they could take me right away even though I hadn't made an appointment.
Sixth karmic alignment: Arrived early at the hospital for zometa and was told to get some lunch, the nurses were too busy to take me early. Okay, maybe eating hospital cafeteria food isn't exactly serendipitous, but at least it's cheap.
Seventh karmic alignment: No one ticketed my car parked by the hospital even though I had technically been parked more than two hours.
Came home after zometa, took a nap (sleeping on the left side since I'd had the flu shot in the right arm), made mushroom soup for dinner and didn't have an evening meeting. Now that's my kind of day!
First karmic alignment: I found a parking space literally in front of the entrance to the DOL building at 1000 2nd Avenue. No matter that the entrance to the DOL office was around the corner. At least I didn't have to walk blocks in the rain.
Second karmic alignment: It stopped raining just as I pulled into the parking space.
Third karmic alignment: The reason I couldn't renew online or through the mail was because I literally needed a new license. The other types of renewals are for the sticker you place on your current license. And the photo they took wasn't so bad.
Fourth karmic alignment: I walked the two blocks to the doctor's office to try to get a flu shot since I had such a primo parking space.
Fifth karmic alignment: The doctor's office was having a flu clinic and they could take me right away even though I hadn't made an appointment.
Sixth karmic alignment: Arrived early at the hospital for zometa and was told to get some lunch, the nurses were too busy to take me early. Okay, maybe eating hospital cafeteria food isn't exactly serendipitous, but at least it's cheap.
Seventh karmic alignment: No one ticketed my car parked by the hospital even though I had technically been parked more than two hours.
Came home after zometa, took a nap (sleeping on the left side since I'd had the flu shot in the right arm), made mushroom soup for dinner and didn't have an evening meeting. Now that's my kind of day!
October 28, 2009
Final (for now) lymphedema treatment
The PT and I agree that since the manual lymphatic drainage massage doesn't appear to be working, it's time to stop wasting money and time on it. I went straight form PT to order new sleeves and gloves and the provider gave me a new glove yesterday from stock on hand. The new sleeves are made to measure in Germany and take a couple of weeks to arrive. When they get here, I will stop bandaging at night, wean myself off the ativan, wear the new garments and hope for stability.
The good news is that the sleeve provider measured my arm yesterday and each measurement was the same as in April, the last time I had sleeves made. So hopefully the extra puffiness in my hand may resolve on its own, just like it did the last time, and I will be back to my usual daily lymphedema dealings.
One can always hope.
The good news is that the sleeve provider measured my arm yesterday and each measurement was the same as in April, the last time I had sleeves made. So hopefully the extra puffiness in my hand may resolve on its own, just like it did the last time, and I will be back to my usual daily lymphedema dealings.
One can always hope.
October 27, 2009
Last authorized physical therapy
Today is the last authorized day of physical therapy for my lymphedema flare up. I know I could get more visits approved, but if the PT thinks it's not helping, she won't recommend more treatment.
I am worried that I won't be able to manage this flare up without professional help and don't know what I'll do if I have to. Yes, I will be measured for a new sleeve and glove. That's the next step at this point. My six month old sleeve and glove are too worn out to be effective any more.
But if the bandaging isn't helping at night, and the sleeve and glove aren't providing enough compression during the day, what's left?
I guess I will find out in a few hours. In the meantime, stress.
I am worried that I won't be able to manage this flare up without professional help and don't know what I'll do if I have to. Yes, I will be measured for a new sleeve and glove. That's the next step at this point. My six month old sleeve and glove are too worn out to be effective any more.
But if the bandaging isn't helping at night, and the sleeve and glove aren't providing enough compression during the day, what's left?
I guess I will find out in a few hours. In the meantime, stress.
October 23, 2009
Lymphedema update
It's now officially seven weeks since I began dealing with this lymphedema flare up. The physical therapist measured my arm today and there is no real change. I have had nine rounds of PT so as you can imagine, I am distressed. She gave me some new bandaging material to try over the weekend. I have one more approved visit next week and then, if things remain the same, the PT will recommend that I not continue therapy at this time but get fitted for a new sleeve and glove. If, on the other hand, things change over the weekend and there is measurable improvement in my hand and arm, the PT will request authorization for additional visits and continue to treat me.
Dealing with lymphedema is endlessly frustrating. Evidently, although many people respond quickly to the manual lymphatic drainage, massage and bandaging (the gold standard of treatment for lymphedema), there are a stubborn few who have fall into the cracks and don't get immediate relief. That's my lymphedema -- Trouble with a capital T.
Dealing with lymphedema is endlessly frustrating. Evidently, although many people respond quickly to the manual lymphatic drainage, massage and bandaging (the gold standard of treatment for lymphedema), there are a stubborn few who have fall into the cracks and don't get immediate relief. That's my lymphedema -- Trouble with a capital T.
October 22, 2009
The best ST:TNG episode EVER!
I have been staying up past eleven o'clock every night to check out the first five minutes of the Star Trek: The Next Generation episode on reruns. Last night, despite my fatigue, my all-time favorite episode aired and I had to stay up to watch the whole thing.
"First Contact" remains the episode I most associate with the genius of Star Trek. Commander Riker is part of a first contact team studying a civilization on the verge of breaking out into the galaxy in order to offer them a chance to join the federation. He is injured and at a medical facility -- surprise -- is revealed to be an alien.
The planet's population appears to be split about the rapid technological and social changes they are undergoing. (Sound familiar?) The planetary head of government wants to move forward with space exploration, as does the science minister. The minister of security worries that the people can't handle so much new at once. Riker's injuries and Captain Picard's appearance to the planetary government combine to shake things up too much. The minister of security tries to make it appear that Riker shot him. His supposed martyrdom is intended to maintain the status quo and send the aliens away.
The real importance of this episode for me is the role the science minister plays. She tells part of her backstory:
Mirasta Yale: [visiting the Enterprise] When I was a child, my parents would take me to the planetarium. And we would sit in the dark. And it was as if I was on a spaceship, on my way to another world - to meet people on other planets. Part of me is waiting for the lights to come up, and the program to end.
And at the end of the episode, after learning that her proposed study of warp drive will have to be slowed down, and that the Enterprise will leave, perhaps only to return after many years, she asks to stay on the Enterprise and leave her planet.
Mirasta Yale: Take me with you!
Captain Jean-Luc Picard: I have to believe that you cannot be fully prepared for the realities of space travel.
Mirasta Yale: I have been prepared for the realities of space travel since I was nine years old and sitting in a planetarium!
That was Roddenberry's genius -- to articulate the human desire to explore and discover. I thrilled to Mirasta Yale's character's line "Take me with you!" the first time I heard it in 1991. Hearing it again last night was no less soul-stirring. I too want to be part of Star Trek's advanced civilization. And by the year 2367, they surely have discovered a cure for cancer!
"First Contact" remains the episode I most associate with the genius of Star Trek. Commander Riker is part of a first contact team studying a civilization on the verge of breaking out into the galaxy in order to offer them a chance to join the federation. He is injured and at a medical facility -- surprise -- is revealed to be an alien.
The planet's population appears to be split about the rapid technological and social changes they are undergoing. (Sound familiar?) The planetary head of government wants to move forward with space exploration, as does the science minister. The minister of security worries that the people can't handle so much new at once. Riker's injuries and Captain Picard's appearance to the planetary government combine to shake things up too much. The minister of security tries to make it appear that Riker shot him. His supposed martyrdom is intended to maintain the status quo and send the aliens away.
The real importance of this episode for me is the role the science minister plays. She tells part of her backstory:
Mirasta Yale: [visiting the Enterprise] When I was a child, my parents would take me to the planetarium. And we would sit in the dark. And it was as if I was on a spaceship, on my way to another world - to meet people on other planets. Part of me is waiting for the lights to come up, and the program to end.
And at the end of the episode, after learning that her proposed study of warp drive will have to be slowed down, and that the Enterprise will leave, perhaps only to return after many years, she asks to stay on the Enterprise and leave her planet.
Mirasta Yale: Take me with you!
Captain Jean-Luc Picard: I have to believe that you cannot be fully prepared for the realities of space travel.
Mirasta Yale: I have been prepared for the realities of space travel since I was nine years old and sitting in a planetarium!
That was Roddenberry's genius -- to articulate the human desire to explore and discover. I thrilled to Mirasta Yale's character's line "Take me with you!" the first time I heard it in 1991. Hearing it again last night was no less soul-stirring. I too want to be part of Star Trek's advanced civilization. And by the year 2367, they surely have discovered a cure for cancer!
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