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!
October 30, 2009
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!
October 21, 2009
More pink ribbon crap
Unbelievable! I just got an email from Young Survival Coalition in which they provide good info about breast cancer but then proceed to hawk more pink ribbon crap. And they don't disclose how much money YSC gets from each purchase.
Do me a favor -- DON"T go to their boutique and shop. Feel free to make a donation, it's a worthy cause; but please don't participate in the "Pinktobering" of breast cancer.
Do me a favor -- DON"T go to their boutique and shop. Feel free to make a donation, it's a worthy cause; but please don't participate in the "Pinktobering" of breast cancer.
YSC's Breast Cancer Awareness Month Boutique
We are pleased to announce the partnerships Young Survival Coalition has formed with numerous retailers in honor of Breast Cancer Awareness Month 2009. The support and generosity of our corporate partners will help raise vital awareness about young women and breast cancer as well as the much needed funding to ensure that young women affected by the disease can access the resources, programs and peer support they need.
We are grateful to our retail partners for sharing the same passion and dedication to our mission that the YSC Board, staff and thousands of volunteers do, and we hope you will show your support by doing your holiday shopping early.
Please visit our online Boutique for a complete listing of all the exciting products available this year as well as purchasing information.
Mikimoto Everything Is Possible with Hope Bracelet
Afterglow Organic Lip Love in Muse
Breast Cancer Awareness Edition Oakley Ravishing
Lauren Merkin Breast Cancer Awareness Wallet
Note: In our Boutique, ongoing partnerships are marked with an asterisk; purchases made throughout the year will benefit YSC.
YSC's Pink Vespa Sweepstakes
Become a fan of YSC on Facebook and register for a chance to drive away on this limited edition pink Vespa LX 50! Already a fan of YSC? You're still eligable to enter, just vist our fan page for more details. Help us reach 10,000 fans, and spread the word that young women can and do get breast cancer.
October 20, 2009
Hooked on "Star Trek: The Next Generation" -- AGAIN
I was channel surfing one night last week and came across reruns of Star Trek: The Next Generation (now to be known as TNG). The first episode I saw was when when the Borg captured Captain Picard. Well, I remembered that was a good one, so I stayed up until midnight watching. The next night was the post-Borg episode when Picard goes back to his home village on earth and has one of the best Star Trek endings ever, proving that Gene Roddenberry was truly a genius.
It ends with Picard back on board the Enterprise, and all's right with the world. His star-crazed young nephew sits outdoors looking up at a starry sky, dreaming about when he will be a starship captain. That image wrung my heart.
I always wanted to travel in space. Good lord, I've been reading science fiction since I was 11 years old! Now that I am turning fifty next month, and living with metastatic cancer, it seems highly unlikely that my dream will ever come true. Still, many other girls and boys were inspired by reading science fiction and watching Star Trek and took up careers that may some day bring humanity to the stars.
So now I am hooked on TNG again and stay up too late at night watching bad 80's hair styles and some pretty stiff acting. But I still want to go aboard the Enterprise one day "to explore strange new worlds, to seek out new life and new civilizations, to boldly go where no one has gone before..."
October 19, 2009
Not so much pink
I haven't seen so much pink this October. Maybe the concept of cause marketing is slowing down, or maybe there really is less breast cancer pink ribbon crap out there. Or maybe I just am not noticing it....
October 16, 2009
Dunava in concert
Dunava is very happy to hold our first-ever concert with the Seattle Folklore Society! We will be singing Saturday, November 7, at 7:30 p.m. in the Phinney Neighborhood Center (Brick Building), in Seattle. And rather than try myself to persuade you to attend, here is what the SFS Web site (http://www.seafolklore.org/folksche.html) says about us:
There you have it! We'll be in sock-off-knocking form.
Tickets are $14 and are available online. SFS members receive a discount, and kids and seniors are half-price.
The Phinney Neighborhood Center is at 6532 Phinney Avenue N, Seattle, WA 98103. Concerts are held in the Community Hall (brick building). Free parking in the lower parking lot at the Center. Enter the lot on N 67th, between Phinney and Dayton Ave. Phinney Center has disability parking outside the door on the Dayton Street side of the building and flat access into the hall from Dayton. Parking on Dayton Ave is available for disabled and musician load/unload only.
We look forward to seeing you there!
"Perhaps you tried to catch them at the Balkan Showcase during Folklife but got shut out of that phenomenal standing-room-only show? Well...fret not! Thankfully, you have another chance! ... Dunava is a local treasure carrying forward these "old country" musical traditions right here at home with a rare mixture of carefully studied authenticity and spirited interpretation. They have also just released their first studio recording, after much popular demand at their live shows. Please come out to welcome Dunava in their debut Seattle Folklore Society performance. These ladies will knock your socks off!"
There you have it! We'll be in sock-off-knocking form.
Tickets are $14 and are available online. SFS members receive a discount, and kids and seniors are half-price.
The Phinney Neighborhood Center is at 6532 Phinney Avenue N, Seattle, WA 98103. Concerts are held in the Community Hall (brick building). Free parking in the lower parking lot at the Center. Enter the lot on N 67th, between Phinney and Dayton Ave. Phinney Center has disability parking outside the door on the Dayton Street side of the building and flat access into the hall from Dayton. Parking on Dayton Ave is available for disabled and musician load/unload only.
We look forward to seeing you there!
October 15, 2009
Attitude adjustment
Yesterday I saw the PT for the first time in more than a week. She confirmed for me that my hand and arm were no worse - but not especially better - after bandaging 20+ hours a day for five days in a row. So she gave me permission to not do this. What a concept! As she said, if it's not helping, and it's making you suffer, why do it?
I am back to wearing the sleeve and glove during the day and bandaging at night. This morning my hand feels a bit swollen but my arm seems improved. The PT will check my wrappings to see if I need to purchase new ones in case the stretch has given out. Sadly, these bandages are not "durable medical equipment" because they wear out after several weeks/months of use. If they were considered DME, my health insurance would cover the expense. As it is, I have to pay up front every time I need new supplies. Thankfully the undersleeves and finger bandages have a much longer life span and are washable.
J, the PT, rearranged her schedule to find me some additional appointments so I will now see her at least twice a week for a few weeks. I really think it was going for a week without treatment that put me over the edge. But she is the only PT with manual lymphatic drainage skills at this practice, I like her, and her schedule fills up quickly.
This is why it takes me so many weeks, even months, to wrestle down a flare up. First I have to identify the problem. Then I try to address it on my own, hoping it will resolve simply. That takes a week. Then by the time I realize that I need PT, I have to get an appointment AND try to get adequate follow up (i.e., twice or more a week for several weeks). That can prove impossible, as we saw last week when J had nothing available.
I will see her again, get her opinion on buying new supplies, and go back again next week.
I am back to wearing the sleeve and glove during the day and bandaging at night. This morning my hand feels a bit swollen but my arm seems improved. The PT will check my wrappings to see if I need to purchase new ones in case the stretch has given out. Sadly, these bandages are not "durable medical equipment" because they wear out after several weeks/months of use. If they were considered DME, my health insurance would cover the expense. As it is, I have to pay up front every time I need new supplies. Thankfully the undersleeves and finger bandages have a much longer life span and are washable.
J, the PT, rearranged her schedule to find me some additional appointments so I will now see her at least twice a week for a few weeks. I really think it was going for a week without treatment that put me over the edge. But she is the only PT with manual lymphatic drainage skills at this practice, I like her, and her schedule fills up quickly.
This is why it takes me so many weeks, even months, to wrestle down a flare up. First I have to identify the problem. Then I try to address it on my own, hoping it will resolve simply. That takes a week. Then by the time I realize that I need PT, I have to get an appointment AND try to get adequate follow up (i.e., twice or more a week for several weeks). That can prove impossible, as we saw last week when J had nothing available.
I will see her again, get her opinion on buying new supplies, and go back again next week.
October 14, 2009
More coping through sleeping
Yesterday I wrapped my arm after breakfast and dragged my sorry ass around doing errands -- groceries, library, gas station, meeting. By the time I got home I was wiped AND frustrated, so again went to bed at 5 PM. I really feel for Rik through all this. My coping strategy can't be good in the long run for our marriage but in the meantime sleep and anti-anxiety drugs seem to be the only things holding me together. Vitamin CH isn't even helping.
Now it's so early that dawn hasn't even cracked. I have to get myself ready to head off to see the physical therapist (YAY! about time!), but that entails washing me, feeding me, feeding and walking two dogs -- in the dark and pouring rain.
The PT wants to see my bandaging supplies. If she makes me actually bandage I may scream.
Now it's so early that dawn hasn't even cracked. I have to get myself ready to head off to see the physical therapist (YAY! about time!), but that entails washing me, feeding me, feeding and walking two dogs -- in the dark and pouring rain.
The PT wants to see my bandaging supplies. If she makes me actually bandage I may scream.
October 12, 2009
Late night thoughts
Saturday: bandaged for 22 hours (10 AM - 8 AM the next day)
Time sleeping: 18 hours (2 PM - 8 AM)
Sunday: bandaged for 22 hours (10 AM - 8 AM)
Time sleeping: 16 hours (2 PM - 6 PM; 8 PM - 8 AM)
Monday: bandaged for 15 hours (5 PM - 8 AM)
Time sleeping: 14 hours (5 PM - 10 PM; 11 PM - 8 AM) (I hope)
I'm not sure how well sleep as a coping mechanism is working. I can only spend so many hours lying down. But the sleeve and glove are not giving me enough relief. By 4 PM today I was desperate to remove them and bandage, even if it meant getting into bed right away.
I never see Rik, since he gets up at 6 and by the time he gets home I am bandaged and on my way to bed. Can't read a book (can't hold it in only my right hand and turn pages). Hunt and peck typing only when desperate to get caught up on email. Can't cook (afraid to hold a sharp knife in my right hand and can't manipulate one in my bandaged left hand). Can't order in every day either. So I'm not eating dinner (no great loss here, it can't hurt to lose a few pounds, but Rik is eating spaghetti every day). The only ones who are enjoying this are the dogs. They love to cuddle in bed.
My stress and anxiety are sky-high and even ativan isn't giving me enough relief anymore. I see the PT on Wednesday morning and hopefully after I unload all this on her, she will have some ideas. Meanwhile I am making myself and everyone around me crazy.
If I thought cancer was bad, lymphedema is a CURSE.
Time sleeping: 18 hours (2 PM - 8 AM)
Sunday: bandaged for 22 hours (10 AM - 8 AM)
Time sleeping: 16 hours (2 PM - 6 PM; 8 PM - 8 AM)
Monday: bandaged for 15 hours (5 PM - 8 AM)
Time sleeping: 14 hours (5 PM - 10 PM; 11 PM - 8 AM) (I hope)
I'm not sure how well sleep as a coping mechanism is working. I can only spend so many hours lying down. But the sleeve and glove are not giving me enough relief. By 4 PM today I was desperate to remove them and bandage, even if it meant getting into bed right away.
I never see Rik, since he gets up at 6 and by the time he gets home I am bandaged and on my way to bed. Can't read a book (can't hold it in only my right hand and turn pages). Hunt and peck typing only when desperate to get caught up on email. Can't cook (afraid to hold a sharp knife in my right hand and can't manipulate one in my bandaged left hand). Can't order in every day either. So I'm not eating dinner (no great loss here, it can't hurt to lose a few pounds, but Rik is eating spaghetti every day). The only ones who are enjoying this are the dogs. They love to cuddle in bed.
My stress and anxiety are sky-high and even ativan isn't giving me enough relief anymore. I see the PT on Wednesday morning and hopefully after I unload all this on her, she will have some ideas. Meanwhile I am making myself and everyone around me crazy.
If I thought cancer was bad, lymphedema is a CURSE.
Metastatic Breast Cancer - No Pretty Pink Ribbon
By Ellen Moskowitz - President, Metastatic Breast Cancer Foundation
Oct 7, 2009 - 10:23:33 AM
Oct 7, 2009 - 10:23:33 AM
(HealthNewsDigest.com) - It’s October. The pink ribbons are out. Survivors flock to tell their success stories. We hear how they fought hard and won the battle and can now move on and get back to their life - usually as a ‘better person’ for the experience. We all applaud. It feels good. There is closure and we all love closure. But what about the 30% of those with breast cancer whose cancer has spread beyond the breast to the bone or a vital organ ( usually the lungs, liver, brain)? That 30% is the metastatic population.
Everyone knows someone who had surgery, chemo, radiation and then struggled with their fears and finally got their life back on track. Everyone knows someone who died of metastatic breast cancer. What people don’t know is that, in the United States, there are 155,000 of us currently living with metastatic breast cancer.
CANCER IS A GROWTH – NOT A GROWTH EXPERIENCE
Those of us living with metastatic breast cancer don’t have a story that can be tied up with a pretty pink ribbon. We don’t ever get to move on and get back to our life. Cancer treatment IS our life.
There is no cure for us BUT there are treatments – and we stay on treatments forever. And that is a good thing. The bad news is that the cancer cells learn how to outsmart the treatment drug, and then the treatment fails us and we need to go on to the next treatment – always living with the fear of running out of treatments. It’s the feeling of being in an eternal race.
We don’t fit in with all the cheering about ‘beating the disease’. We have to learn how to live with the ever-present anxiety of knowing it is a matter of time till the present treatment stops working. We are left trying to explain to friends and family why we are still on chemo. The world likes closure and we have no closure. Our treatments go on and on and on - we hope for a very long time.
METASTATIC BREAST CANCER AWARENESS DAY
Back in 2007, several of us living with metastatic disease were sitting around Nina’s dining room table, struggling for ideas. What could the Metastatic Breast Cancer Network (MBCN) do to help bring this disease out of the shadows? We realized that if we were to ever impact funding and research to extend to those whose cancer has already spread, we would have to bring awareness to this disease and get us out of the shadows.
It was Amy who suggested a proclamation declaring a special day in October for metastatic breast cancer. She contacted Mayor Bloomberg’s office in NYC and we got the proclamation! Feeling thrilled, we sent out a copy of the proclamation to all 250 members of MBCN. Next thing we knew, Meg in Princeton, NJ got a proclamation, as did Living Beyond Breast Cancer (lbbc) in Philadelphia, along with a proclamation from Buffalo Grove, Illinois.
In the spring of 2008, a member in Maine wrote to MBCN announcing she got a proclamation from the Governor of her state. Our awareness campaign kicked into action! We email blasted our then 900 members requesting they contact their mayors and governors to get proclamations for Metastatic Awareness Day. To our amazement, within 48 hours, we had over 150 responses!
We heard from members across the country, and they sent the email on to their friends, and we heard from them too. And we heard from women across the various oceans.
WE HAD HIT A CHORD
Some of the responses we received included....
I want to shout. Many of us are living isolated, with great sadness that we may not be around for long. I will fight this disease with humor and positive thinking, but sometimes that goes so far.
Thank you for your efforts to make all of us with stage 4 BC heard. This is a difficult kind of struggle for as long as we are going to be able to exist.
We need to let everyone know that we want to be taken seriously, not just people waiting to die--but people fighting every minute to live.
When breast cancer is discussed on TV, we never hear the word metastatic. Let's show the metastatic face--stand up ladies, for you are fighting the battle in ways that give the word COURAGE a new meaning.
I've been living with metastatic breast cancer for nearly 5 years--and people DO NOT UNDERSTAND the never-ending nature of this disease.
Thank you for helping us come out of the shadows and into the light.
I have felt very lonely and different from all my breast cancer friends. I am in a different category. People say I am so glad you are cured and it’s uncomfortable and hard for them to get my situation.
My mother passed away from metastatic breast cancer and this is the first time I've seen in words described how she felt exactly. I will speak out for her.
AWARENESS OF THIS MISUNDERSTOOD DISEASE
Today MBCN has 1400 members. As I type this, proclamations are coming in from mayors and governors across the country. Last July, MBCN spearheaded National Metastatic Awareness Day by sending a group of patients with metastatic disease to Washington.
Awareness is growing. Our faces are being seen. Our voices are being heard.
We need this disease to be understood by the breast cancer community, the medical community and the public at large. We need to bring attention to our cause so that research will focus on the process of metastasis in order to develop more and better targeted treatments to extend life and make metastatic breast cancer a truly chronic disease.
For more information on Metatsatic Breast Cancer Awareness Day, visit Metastic Breast Cancer Network.
October 11, 2009
Just finished 22 hours bandaged
I wrapped my arm around 10 AM yesterday and stayed wrapped until just a few moments ago at 8 AM Sunday morning. There does seem to be some improvement, but not enough in my hand. My, did I suffer yesterday!
i went to synagogue bandaged and answered many annoying questions from well-meaning people who wanted to know if I was all right. I came home from shul and took my usual Shabbat nap. Had a snack, let the dogs out, and then decided I was too frustrated to go on.
I took some ativan and tried to continue reading my book. No impact -- I was still stressed and anxious even with 0.5 mg ativan on board. So at 6 PM I decided to get into bed and go to sleep. This is a pretty typical coping mechanism when I feel like life has given me more than I can handle.
I changed into pajamas, took some more ativan, and got into bed. I think I heard Rik come to bed around 11 PM. Some time in the middle of the night I had to use the bathroom, then took more ativan to get back to sleep. Woke up again around 4 with back ache, so took some vicodin to help relax. At 6 both dogs decided they had to go outside, so I got out of bed with them. Took another ativan to try to get back to sleep yet again. And at 7:50 AM I decided I'd had enough.
Since I don't have anything planned for today, I will try to bandage again for 20-22 hours. Unfortunately, this makes me incredibly cranky, anxious and tough to be around. Never mind that I won't be able to take down the sukkah, type, write, cook a meal, etc.
And if I need to do so again, I will go to bed at 6 PM to avoid taking out my bad mood on Rik.
i went to synagogue bandaged and answered many annoying questions from well-meaning people who wanted to know if I was all right. I came home from shul and took my usual Shabbat nap. Had a snack, let the dogs out, and then decided I was too frustrated to go on.
I took some ativan and tried to continue reading my book. No impact -- I was still stressed and anxious even with 0.5 mg ativan on board. So at 6 PM I decided to get into bed and go to sleep. This is a pretty typical coping mechanism when I feel like life has given me more than I can handle.
I changed into pajamas, took some more ativan, and got into bed. I think I heard Rik come to bed around 11 PM. Some time in the middle of the night I had to use the bathroom, then took more ativan to get back to sleep. Woke up again around 4 with back ache, so took some vicodin to help relax. At 6 both dogs decided they had to go outside, so I got out of bed with them. Took another ativan to try to get back to sleep yet again. And at 7:50 AM I decided I'd had enough.
Since I don't have anything planned for today, I will try to bandage again for 20-22 hours. Unfortunately, this makes me incredibly cranky, anxious and tough to be around. Never mind that I won't be able to take down the sukkah, type, write, cook a meal, etc.
And if I need to do so again, I will go to bed at 6 PM to avoid taking out my bad mood on Rik.
October 08, 2009
Report from the oncologist
I saw Dr. Goldberg (Seattle's best oncologist) yesterday for my monthly checkup. Although my tumor markers continued to climb in the past four weeks, the few points' difference were not statistically significant. That may mean the increased Megace dose is having a greater effect on my cancer. The tumor in my right breast feels smaller to the touch and so I will have another ultrasound to determine if it is indeed shrinking. (Remember, we are treating me systemically through drugs that will hopefully make an impact on all my metastases as well as the new tumors. That's why I did not have surgery to remove the new tumors.)
Dr. G may want me to change treatment. We looked into the dasatinib trial again and he mentioned starting Avastin (bevacizumab). Then he got on the phone with Dr. Hannah Linden, another oncologist specializing in breast cancer whose opinion he respects. She said the dasatinib trial had ended because the drug was not found to be effective. She thinks highly of the recent high- vs. low-dose estrogen trial, which Dr. G is not sure is safe. And she would not recommend Avastin as a good way for him to go in my case. Dr. Linden did mention that there would be a new trial of a histone deacetylase inhibitor starting a few months. Perhaps that would be of help to me.
This is why they call it practicing the art of medicine -- they're practicing on me. It's almost more of an art than a science....
Dr. G may want me to change treatment. We looked into the dasatinib trial again and he mentioned starting Avastin (bevacizumab). Then he got on the phone with Dr. Hannah Linden, another oncologist specializing in breast cancer whose opinion he respects. She said the dasatinib trial had ended because the drug was not found to be effective. She thinks highly of the recent high- vs. low-dose estrogen trial, which Dr. G is not sure is safe. And she would not recommend Avastin as a good way for him to go in my case. Dr. Linden did mention that there would be a new trial of a histone deacetylase inhibitor starting a few months. Perhaps that would be of help to me.
This is why they call it practicing the art of medicine -- they're practicing on me. It's almost more of an art than a science....
October 07, 2009
One month (plus) of lymphedema flare up
This lymphedema flare up seems particularly stubborn. Or maybe I just don't remember from last time. After 32 days, there is a lot of fluid in my hand, wrist and forearm, so much so that even without a glove or bandaging I am having trouble gripping things with my left hand.
This week I was unable to schedule an appointment with my PT, so I am back to bandaging as much as possible. That meant being wrapped from 8 AM yesterday to 7 AM today. I didn't see much change or improvement and can't be without the use of my hand for multiple days in a row. Today I am wearing the sleeve and glove in hopes of being able to accomplish some tasks. I will bandage again after dinner and stay that way overnight, then spend Thursday wrapped for another 20-22 hours. (Thursday is good since I don't have anything planned).
Of course, this back and forth with bandaging means I tend to overdo on the days I wear the sleeve and glove to make up for the fact that I am so limited in fine motor control when bandaged. That means today's tasks include ironing, maybe some garden work if the sun holds out, and being able to cook dinner.
Last night I was so frustrated after spending the entire day bandaged that we had to go out for dinner. It was yummy Thai food, but still! My frustration level grows by leaps and bounds with every additional day of dealing with this lymphedema flare up.
This week I was unable to schedule an appointment with my PT, so I am back to bandaging as much as possible. That meant being wrapped from 8 AM yesterday to 7 AM today. I didn't see much change or improvement and can't be without the use of my hand for multiple days in a row. Today I am wearing the sleeve and glove in hopes of being able to accomplish some tasks. I will bandage again after dinner and stay that way overnight, then spend Thursday wrapped for another 20-22 hours. (Thursday is good since I don't have anything planned).
Of course, this back and forth with bandaging means I tend to overdo on the days I wear the sleeve and glove to make up for the fact that I am so limited in fine motor control when bandaged. That means today's tasks include ironing, maybe some garden work if the sun holds out, and being able to cook dinner.
Last night I was so frustrated after spending the entire day bandaged that we had to go out for dinner. It was yummy Thai food, but still! My frustration level grows by leaps and bounds with every additional day of dealing with this lymphedema flare up.
October 05, 2009
Sick of pink
From THE BOSTON GLOBE SUNDAY MAGAZINE - THE HEALTH ISSUE
Sick of pink
Click here to read the full article.
Sick of pink
This month, like every October, a sea of pink ribbons washes over products from sneakers to snacks. While the effort raises research dollars, it leaves some breast cancer survivors feeling that companies are profiting from their pain.
Click here to read the full article.
October 04, 2009
Back to bandaging
After three visits to the physical therapist, it is clear that her suggestion to leave my arm bare at night for a few nights and do the self-massage twice a day did not result in any improvement. In fact, my hand and forearm are slightly larger than when she measured me on the first visit. Not statistically significant, but enough information to warrant going back to bandaging again.
I had a few nights of normal sleep but yesterday wrapped my arm around 6 PM and stayed wrapped all night until 8 this morning. Since my choir has a performance today, I'll do the same this afternoon. I will look for a day when I have no activities planned so that I can bandage first thing in the morning after my shower and stay that way until the next morning. Bandaging is most effective when done 20-22 hours per day, but given how extremely left-handed I am , it's very tough for me to find a day when I don't need to write, type, cook, drive or do anything requiring fine motor control with my dominant hand.
I am back on the ativan as a sleep aid at night because of the bandaging. It's funny: I sleep soundly, but don't remember my dreams, and hardly move. So I wake up with a sore shoulder from not having turned over even once in the night. I am sure after a couple more nights on it I will become used to the ativan again and it will give me sleep more like what I'm used to -- a little twisting and turning, trying to roll over, waking at night from a hot flash, etc.
I have seven more PT visits approved and scheduled, through November 3. That will make a total of eight weeks and three days of dealing with this lymphedema flare up. I need to order new sleeves and gloves but don't want to do so until the PT has told me my arm is back to normal. I just can't seem to catch a break this time.
I had a few nights of normal sleep but yesterday wrapped my arm around 6 PM and stayed wrapped all night until 8 this morning. Since my choir has a performance today, I'll do the same this afternoon. I will look for a day when I have no activities planned so that I can bandage first thing in the morning after my shower and stay that way until the next morning. Bandaging is most effective when done 20-22 hours per day, but given how extremely left-handed I am , it's very tough for me to find a day when I don't need to write, type, cook, drive or do anything requiring fine motor control with my dominant hand.
I am back on the ativan as a sleep aid at night because of the bandaging. It's funny: I sleep soundly, but don't remember my dreams, and hardly move. So I wake up with a sore shoulder from not having turned over even once in the night. I am sure after a couple more nights on it I will become used to the ativan again and it will give me sleep more like what I'm used to -- a little twisting and turning, trying to roll over, waking at night from a hot flash, etc.
I have seven more PT visits approved and scheduled, through November 3. That will make a total of eight weeks and three days of dealing with this lymphedema flare up. I need to order new sleeves and gloves but don't want to do so until the PT has told me my arm is back to normal. I just can't seem to catch a break this time.
October 01, 2009
Think before you pink
October has rolled around again. Even in September, Yoplait yogurt was advertising on national television for people to lick their pink yogurt lids clean and mail them to the company so it can make a (modest?) donation to Komen for the Cure.
This is a pet peeve of mine: the "pinking" of breast cancer. Getting people to buy pink beribboned merchandise in the hope that some of the sale price will benefit breast cancer research, or support women living with breast cancer.
Personally, I'd prefer that instead of buying more pink ribbon stuff, you simply make a donation in any amount to a worthy breast cancer-related cause.
The people at Think Before You Pink have created some critical questions to ask before you buy pink:
1. How much money from your purchase actually goes toward breast cancer? Is the amount clearly stated on the package?
When the package does state the amount of the donation, is that amount enough? Fox Home Entertainment, for example, sold “DVDs for the Cure” for $14.95 and donated 50 cents to Susan G. Komen for the Cure. Is this a significant contribution, or a piddly amount? You decide. If you can’t tell how much money is being donated, or if you don’t think it’s enough, give directly to the organization instead.
2. What is the maximum amount that will be donated?
Many companies place a cap on the amount of money that will be donated. For example, Give Hope Jeans, sold by White House Black Market for $88, donated “net proceeds” from the sale to the organization Living Beyond Breast Cancer. But they’ve capped their contributions at $200,000. This means that once they had reached the $200,000 limit they stopped contributing, no matter how many pairs of jeans were purchased.
In some cases, that cap is a generous amount. In some cases it’s not. But you should know that, whenever there is a cap, your individual purchase may not contribute anything to the cause, depending on when you shop and whether the cap has already been met.
3. How are the funds being raised?
Does making the purchase ensure a contribution to the cause? Or do you, the shopper, have to jump through hoops to make sure the money gets where it’s supposed to go? Lean Cuisine, for example, had a pink ribbon on its boxes of frozen meals, but the purchase of the meal did not result in a donation to a breast cancer organization. Instead, consumers had to visit the Lean Cuisine web site and buy a pink Lean Cuisine lunch tote. Only then would $5 of the tote purchase be donated to Susan G. Komen for the Cure.
4. To what breast cancer organization does the money go, and what types of programs does it support?
Does the product’s package tell you where the money goes and what will be done with it? For example, Penn is selling pink tennis balls and the package states that 15 cents of your purchase will go to “a Breast Cancer Research Organization.” It doesn’t tell you which organization or what kind of research will be done. Will the money go to fund the same studies that have been ongoing for decades (which already get enormous financial support)? Or will it go to under-funded, innovative research into the causes of breast cancer?
If the donation is going to breast cancer services, is it reaching the people most in need, in the most effective way? The Breast Cancer Site store, for example, donates money to the National Breast Cancer Foundation, which helps pay for mammograms for women who cannot afford them. But mammograms are already covered for low-income women through the National Breast and Cervical Cancer Screening Program. Although this screening program does have limitations, what is most needed is the funding to get low-income women treatment if breast cancer is found. Click here to learn more about this issue.
5. What is the company doing to assure that its products are not actually contributing to the breast cancer epidemic?
Many companies that raise funds for breast cancer also make products that are linked to the disease. Breast Cancer Action calls these companies “pinkwashers.” BMW, for example, gives $1 to Susan G. Komen for the Cure each time you test-drive one of their cars, even though pollutants found in car exhaust are linked to breast cancer. Many cosmetics companies whose products contain chemicals linked to breast cancer also sell their items for the cause.
Think before you spend your money on pink items.
That says it all.
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