I read Bo's blog yesterday and was constantly reminded of the daily battle cancer / and transplant patients must undergo since our immune systems are compromised. The Johnson family is worried about germs and rightfully so, just wear your mask, wash hand often, use the hand gel and give people the cold shoulder (for your health) if you think they are sick.
The Day Care is going to kill me; now there is a notice to watch out for strep throat in the class that Ravyn (little R) is in, I think the class that (medium R) Raegan is in is clean for the rest of this week.
Monday, June 30, 2008
better
I have a new post up at MyBreastCancerNetwork.Com.
I wrote about pulling myself out of the emotional funk, with the help and support of so many of you.
I wrote about pulling myself out of the emotional funk, with the help and support of so many of you.
Sunday, June 29, 2008
The Adventures of Poodle Girl
We went to my 15-year high school reunion this weekend. Only a small percentage of our class attended, but it was a nice, laid-back event. We had a good dinner and lots of '80s songs. I think a lot of work went into planning it. Personalized M&Ms were involved. I saw several people I haven't seen or heard from in years and a few people I still see or talk to from time to time but should probably see more often.
The organizers had set up a photo display, and we were all invited to send in photos from our school days. I never got around to sending any, but somebody else sent in a wallet-sized print of my seventh grade school photo, and there it was, hanging on the wall. Perhaps I should be touched that this person still had a photo of me after nearly 20 years, but really, for the good of humanity, all copies of this photo should have been burned -- and the ashes buried in an undisclosed location -- in 1987.
This is not a good photo.
You know how there are photos where you, personally, imagine you look bad, but really you look just fine? And other people try to reassure you? Sometimes, even if you still look semi-bad, other people still try to tell a little white lie to reassure you? Nobody could even lie well enough to reassure me. My friend Diane, who I have known since I was about 13, spotted the photo and screamed, "HOLY SH*T!"
This is not a good photo.
The bad part was not my red-and-black-striped '80s sweater. It was not my chipmunk cheeks. I had a fairly decent facial expression, and I'd just gotten my braces off, so things could have been much, much worse, I suppose. What makes this photo so outstanding in the world of Bad School Photos is my hairdo. My awful, awful hairdo.
But Karen, you're thinking, EVERYONE had an awful hairdo in 1987. This is true. But my hairdo was awful EVEN BY 1987 STANDARDS. In the 1980s, perms raged across the land, and nearly every female looked like she was wearing a poodle on her head; however, most females knew how to style a perm the way it was supposed to be styled. These gals looked like they were at least wearing a nice-looking poodle. A frisky, healthy, glossy, well-cared-for poodle. My poodle? This was clearly a down-on-his-luck, hard-drinking, depressed poodle. This was a poodle who had given up on life, overdosed on cocaine, wandered into a pounding rainstorm, died in the gutter, and somehow managed to end up on my head.
I had no idea how to style a perm. And the sad thing is, I'm sure I worked REALLY HARD to achieve this hairdo on Picture Day and was probably pretty proud of how it turned out. I was 12. I was oblivious. Twelve-year-olds should not be entrusted with perms. There should be a waiting period. You should have to pass a test on hair styling before you are allowed to get a perm on your own head.
In the '80s, nobody knew that a perm is a privilege, not a right.
I worry about how this photo may have affected some of the other attendees. I'm pretty sure a few of them went blind instantly; others will probably suffer from Post Traumatic Stress Syndrome. I feel like I need to right this wrong, but probably the only way it can be done is Quantum Leap style. Here's my to-do list for the week:
1. Pay bills.
2. Take WCK to music class.
3. Invent a method of time travel, visit my 12-year-old self, and convince her to stay away from this perm. Perhaps convince her to stay away from cameras altogether until about 1992.
4. Clean out the car.
Looks like I'm swamped.
The organizers had set up a photo display, and we were all invited to send in photos from our school days. I never got around to sending any, but somebody else sent in a wallet-sized print of my seventh grade school photo, and there it was, hanging on the wall. Perhaps I should be touched that this person still had a photo of me after nearly 20 years, but really, for the good of humanity, all copies of this photo should have been burned -- and the ashes buried in an undisclosed location -- in 1987.
This is not a good photo.
You know how there are photos where you, personally, imagine you look bad, but really you look just fine? And other people try to reassure you? Sometimes, even if you still look semi-bad, other people still try to tell a little white lie to reassure you? Nobody could even lie well enough to reassure me. My friend Diane, who I have known since I was about 13, spotted the photo and screamed, "HOLY SH*T!"
This is not a good photo.
The bad part was not my red-and-black-striped '80s sweater. It was not my chipmunk cheeks. I had a fairly decent facial expression, and I'd just gotten my braces off, so things could have been much, much worse, I suppose. What makes this photo so outstanding in the world of Bad School Photos is my hairdo. My awful, awful hairdo.
But Karen, you're thinking, EVERYONE had an awful hairdo in 1987. This is true. But my hairdo was awful EVEN BY 1987 STANDARDS. In the 1980s, perms raged across the land, and nearly every female looked like she was wearing a poodle on her head; however, most females knew how to style a perm the way it was supposed to be styled. These gals looked like they were at least wearing a nice-looking poodle. A frisky, healthy, glossy, well-cared-for poodle. My poodle? This was clearly a down-on-his-luck, hard-drinking, depressed poodle. This was a poodle who had given up on life, overdosed on cocaine, wandered into a pounding rainstorm, died in the gutter, and somehow managed to end up on my head.
I had no idea how to style a perm. And the sad thing is, I'm sure I worked REALLY HARD to achieve this hairdo on Picture Day and was probably pretty proud of how it turned out. I was 12. I was oblivious. Twelve-year-olds should not be entrusted with perms. There should be a waiting period. You should have to pass a test on hair styling before you are allowed to get a perm on your own head.
In the '80s, nobody knew that a perm is a privilege, not a right.
I worry about how this photo may have affected some of the other attendees. I'm pretty sure a few of them went blind instantly; others will probably suffer from Post Traumatic Stress Syndrome. I feel like I need to right this wrong, but probably the only way it can be done is Quantum Leap style. Here's my to-do list for the week:
1. Pay bills.
2. Take WCK to music class.
3. Invent a method of time travel, visit my 12-year-old self, and convince her to stay away from this perm. Perhaps convince her to stay away from cameras altogether until about 1992.
4. Clean out the car.
Looks like I'm swamped.
Saturday, June 28, 2008
lazy Saturday
Lazy lazy day today, the girls and I will just hang out at the house as they recover, just a few more days until she returns. I HOPE I CAN STAY OUT OF THE HOSPITAL. On a said note I did not get to go to Boston this weekend to advocate for lung cancer (LC) with the Eastern Cooperative Oncology Group (ECOG) the is always next time.
Friday, June 27, 2008
WINE-NEW ARRIVALS 06/27/08
BRAND NEW MALBEC SECTION:
Achaval Ferrer Malbec 07'- One of a kind entry from a renowned Argentinian wine maker. Very lush bold fruit with some subtle smokey-herbal notes. $25.99
Pascual Toso Reserve Malbec 06'- Big bold jammy fruit with flavors of blackberry, violet, plum, black pepper and spice. This is the last offering of this vintage till the 2007's come out. $20.99
Trapiche Malbec 07'- This is a great wine that far exceeds its price. Deep dark fruit on the nose with a hint of brown spice. Boysenberries and casis on the mouth with a good acid balance and firm tannins. Very soft finish. Only $8.99
Back in the Mammo Again
Yesterday I went for my annual mammogram and my semi-annual appointment with the surgeon. The mammo technician was on a word diet, I believe. I think she had only a certain number of words to use that day. She called me by last name, and issued me curt instructions s about where to stand and when to breathe and when to not-breathe. The plates really hurt my breast, but I didn't mind. The machines at the Mammogram Factory, where I used to go, didn't hurt my breasts much, and also didn't reveal my cancer until it had reached stage 2. I asked to have a radiologist and not a fellow talk to me about the results. I got a middle-aged woman I'd never seen before. She explained that I had calcifications and they'd been benign in the past, and hadn't changed much, and were probably benign. But she recommended I have another mammo in six months. I told her that when I was first diagnosed, I had a bad experience with the fellow, who hadn't called me when she said she would, and then when she did call, just said, It's positive, and seemed very cold. The radiologist looked in her records to see who that fellow was, said she was now out of state, and that she was sorry. She added that some patients might not even know what positive meant, they might have thought that it meant good news. She said she didn't like having people receive the news over the phone because you don't know where they are, and that it's really bad when you give the news to an elderly woman who's alone. I asked what training the fellows get, and said that they should get better training, and she said the best thing is to give feedback, that's the only way they know if anything's wrong. I guess I should have said something at the time, but there was so much else going on. I was still teary about this. I hated that cold blonde fellow.
And I know that she was nervous, and aloof-seeming because she was nervous, and also seemed defensive, because she wanted to prove she was a Real Doctor while the patients were thinking she wasn't real and bona fide yet. And maybe it didn't help that she was pretty and blonde and maybe all her life had been trying to convince people that she really was smart. I think now I would be able to tell people they had cancer, but I wouldn't have been able to when I was younger. Why should some 25-year-old know how to do it? I think the radiologists make the fellows do it because they don't want to. At a conference in Iowa this spring I heard a med student (widow of a man who died of cancer in his 20s) talk about how her fellow med students would giggle when they were role-playing delivering bad news. And she didn't want to chide them and tell them that it wasn't a laughing matter, she just let it go. I think the radiologists need to train the fellows how to talk to patients. What makes this tricky is that you have to be secure if you're going to address the patient without pretense, and the teaching docs can't teach security, they can only encourage it. If you're secure then you don't have to be absorbed in proving your expertise. You can pay attention to the needs of your patient.
I do want to find out how they're trained to tell patients they have cancer. There's is a humanities center connected with Fancy Hospital, and I know it's well-regarded, but I haven't met any of the people there. I shall.
And I know that she was nervous, and aloof-seeming because she was nervous, and also seemed defensive, because she wanted to prove she was a Real Doctor while the patients were thinking she wasn't real and bona fide yet. And maybe it didn't help that she was pretty and blonde and maybe all her life had been trying to convince people that she really was smart. I think now I would be able to tell people they had cancer, but I wouldn't have been able to when I was younger. Why should some 25-year-old know how to do it? I think the radiologists make the fellows do it because they don't want to. At a conference in Iowa this spring I heard a med student (widow of a man who died of cancer in his 20s) talk about how her fellow med students would giggle when they were role-playing delivering bad news. And she didn't want to chide them and tell them that it wasn't a laughing matter, she just let it go. I think the radiologists need to train the fellows how to talk to patients. What makes this tricky is that you have to be secure if you're going to address the patient without pretense, and the teaching docs can't teach security, they can only encourage it. If you're secure then you don't have to be absorbed in proving your expertise. You can pay attention to the needs of your patient.
I do want to find out how they're trained to tell patients they have cancer. There's is a humanities center connected with Fancy Hospital, and I know it's well-regarded, but I haven't met any of the people there. I shall.
BEER-NEW ARRIVALS 06/27/08
ALLAGASH "HUGH MALONE"-Limited Edition 750ml -$19.99+tx
ABV: 8.5% Original Gravity: 1080 by volumeRecommended Serving Temp: 45 - 50°FRecommended Cellaring Temp: 55°F
HITACHINO NEST ESPRESSO STOUT-Very limited Japanese import. 7.5%ABV-$5.99+tx
CANTILLON "CUVEE DES CHAMPIONS"-Limited seasonal release from the best producer of Lambic/Gueuze styles in Belgium. 5%ABV. 100% artisinal lambic brewed to celebrate the Union Football Club's 2003 Division 3b title and the team's ascent to Division 2. Aged two years in oak barrels, and then dry-hopped in the cask. -$22.99+tx
Cheers!
-Dave
Stable
I finally got my test results back from last week. My M-spike is hanging in there at 1.7. At least it didn't go up. My total protein is down to 7.2. I'm pretty sure that's the lowest it's ever been. Woo! Now that I know the 6 mg of dex can keep me stable, I'll take Dr. GPO's advice and try the 4 mg.
That's one teeny little dex pill. Just one. I'm sure it'll still make me nuts, though.
Kathy from NJ left a comment that my Revlimid pills are filled with time-release granules. Oh. I was kind of hoping they'd contain, I don't know, teeny magic leprechauns or diamonds or pink puffs of smoke or something.
That's one teeny little dex pill. Just one. I'm sure it'll still make me nuts, though.
Kathy from NJ left a comment that my Revlimid pills are filled with time-release granules. Oh. I was kind of hoping they'd contain, I don't know, teeny magic leprechauns or diamonds or pink puffs of smoke or something.
looking out at the world
My computer and my body are both still pretty sick.
I have been thinking though about my tendency to become a hermit when I get to feeling low, missing work and my old life (or give in to the fear, as cancer is still very real presence and I know that I have not escaped it).
Chemo weeks tend to be the worst but I will admit that I have been struggling a bit of late.
I have this friend who refuses to stop calling me, though, even when I don't call back. A friend who calls and leaves me messages that say, "Just checking in!"
A friend who refuses to let me turn completely inward.
I am very grateful.
I have been thinking though about my tendency to become a hermit when I get to feeling low, missing work and my old life (or give in to the fear, as cancer is still very real presence and I know that I have not escaped it).
Chemo weeks tend to be the worst but I will admit that I have been struggling a bit of late.
I have this friend who refuses to stop calling me, though, even when I don't call back. A friend who calls and leaves me messages that say, "Just checking in!"
A friend who refuses to let me turn completely inward.
I am very grateful.
Great and Powerful Oz
Diane posted a comment asking what "GPO" stands for, as in Dr. GPO. Shortly after I started this blog, I was trying to get in to see him, and it was difficult to get an appointment. I said it was like trying to get in to see the Great and Powerful Oz. I called him "Dr. Great and Powerful Oz" for a few posts, and the nickname just stuck.
I should really stop calling him that, but it's become a habit.
Anyway, enjoy this collection of Wizard of Oz bloopers. I'm ashamed to say that even I didn't know about some of them. The video doesn't show much of my favorite: Judy Garland using Toto to hide a fit of the giggles. You can see it really well in the actual movie.
Thursday, June 26, 2008
Ooooh, pretty.
Today the delivery guy brought me my first bottle of 15 mg Revlimid pills. The 25 mg pills were plain white capsules. The 15 mg pills, though, are a jazzy combo of teal and white. This is fabulous. I say, if you have to take cancer medication, it might as well be pretty.
Here, a crowd of curious onlookers stops to admire my attractive new pills:
Every month, before the pharmacy can ship me my pills, I have to talk to a pharmacist who goes over the long list of Revlimid Rules with me. I am not to donate to a blood bank, I am not to share my medication with anyone (Who would do this? And why?), and I am not to open or crush the capsules. Of course, after hearing this month after month, I am always incredibly tempted to open the capsules. If the pharmacists hadn't given me this instruction, I wouldn't even think about it, but they have planted the seed in my mind. Some nights I think I can barely stand it if I don't open the capsule and look inside. I swallow it quickly before I can give in to the urge. What is in there? What? Since the pills cost about $400 each, I dare not open one. But I will always wonder.
Here, a crowd of curious onlookers stops to admire my attractive new pills:
Every month, before the pharmacy can ship me my pills, I have to talk to a pharmacist who goes over the long list of Revlimid Rules with me. I am not to donate to a blood bank, I am not to share my medication with anyone (Who would do this? And why?), and I am not to open or crush the capsules. Of course, after hearing this month after month, I am always incredibly tempted to open the capsules. If the pharmacists hadn't given me this instruction, I wouldn't even think about it, but they have planted the seed in my mind. Some nights I think I can barely stand it if I don't open the capsule and look inside. I swallow it quickly before I can give in to the urge. What is in there? What? Since the pills cost about $400 each, I dare not open one. But I will always wonder.
My Cancer . . .
When NPR reporter Leroy Sievers asked his cancer blog readers to finish the sentence, "My cancer. . . ," he received more than 350 replies. The responses were as diverse and dynamic as the individuals.
To celebrate the amazing community that Leroy has created, Beth, an NPR staffer, published a photo gallery of moving pictures and inspirational words. Be sure to go to the June 26 post to take a look. You may recognize at least one of the contributors.
To celebrate the amazing community that Leroy has created, Beth, an NPR staffer, published a photo gallery of moving pictures and inspirational words. Be sure to go to the June 26 post to take a look. You may recognize at least one of the contributors.
long / short night
The girls are still on the mend, last night I was up with Ravyn most of the night, I feel like I am catching something my throat is starting to hurt but as I am self medicating with 3 different antibiotics outside the normal onslaught of pills that make up my Olympic diet (BALCO style). Note it is always good to keep a supply of antibiotics around to keep you out of the Spa.
Wednesday, June 25, 2008
Please call your Senators today. Ask them to Vote YES in support of the HR 6331- the Medicare Improvements for Patients and Providers Act of 2008
Urgent Action Request!
Please call your Senators Today..
Please forward to family members, friends & co-workers- we need as many people as possible to call their Senators today! Ask them to vote " YES " for the Medicare Improvements for Patients and Providers Act before the July 4th recess. As constituents your help is vital. Please help preserve access to gynecologic cancer care, we need your help to ensure continued access to quality healthcare. Cuts to Medicare physicians' payments would endanger the ability of doctors to serve their communities. If not prevented, pending cuts in the Medicare program may cause doctors to have to close their doors. We cannot afford this nor allow this to happen, our lives are dependant upon our physicians. Without access to high quality healthcare our lives and the lives of our loved ones are at stake.
This bill will protect critical access to medical care for millions of Americans and seniors. Please encourage Congress to vote Yes in support of the HR 6331-the Medicare Improvements for Patients and Providers Act of 2008.
We must protect access to our doctors for ALL seniors and the millions of other Americans covered under Medicare. Congress must act before the end of June to protect Medicare patients from losing access to their physicians.
Call or email Congress today! Urge your House member to support HR 6331 - the Medicare Improvements for Patients and Providers Act of 2008.
All House offices can be reached by calling 202-225-3121.
New York Senators:
Senator Charles E. Schumer at (202) 224-6542
Senator Hillary Rodham Clinton at (202) 224-4451
Khrissy Lupinacci
LI OCEANS INC
Long Island Ovarian Cancer Education Advocacy Netwok Support
OCNA 2008 Award Winners! CONGRATULATIONS!
OCNA 2008 Award Winners Cindy Melancon Spirit of Survivorship Award
Hailing from Novi, Michigan, Carolyn Benivegna will be this year’s recipient in honor of her persistent advocacy for promoting awareness for ovarian cancer. Carolyn is an ovarian cancer survivor and the founder of the Ovarian Cancer Alliance of Florida-Gulf Coast. She then moved to Michigan when she made a great impact by working with Governor Jennifer Granholm to declare September as Ovarian Cancer Awareness Month. Carolyn and her husband were also recognized by The Henry P. Tappan Society from the University of Michigan for establishing an endowed Ovarian Cancer Research Fund at UM.
The Voice for Ovarian Cancer Research Award
Taking the trip from Woodbury, NJ will be Karen Mason. After being diagnosed at the age of 49, she quickly discovered that getting involved in the ovarian cancer community was a great coping mechanism. Last Fall Karen was invited to be a member of the Dept of Defense’s Integration Panel where proposals are chosen for funding by the Department of Defense’s Ovarian Cancer Research Program. She also serves as a patient advocate for the Fox Chase Cancer Center ovarian SPORE as a full participating member of their Institutional Review Board evaluating consent forms for clinical trials. Karen is continually involved with NED (no evidence of disease) and is a part-time ICU nurse, wife and mother of two sons.
Rosalind Franklin Excellence in Ovarian Cancer Research Award
Dr. Robert Bast, VP of translational research at MD Anderson in Houston, TX will receive this year’s award for developing the OC125 monoclonal antibody that led to the production of the CA125 test. A major focus on Dr. Bast’s current research is the identification of additional serum tumor markers that would complement CA125 for detection of the disease at early stages. Dr, Bast has published more than 500 articles and chapters, and has edited the textbook, Cancer Medicine and one of the most frequently cited scientists in his field. Dr. Bast continues to care for patients with breast and ovarian cancer and has been listed in the Best Doctors of America and America’s Top Physicians.
Maniac on the floor
I know I've been acting like the upcoming NKOTB show will be the concert of the year, but that was until this morning. Mr. Stinky Feet played the North Kansas City Community Center. I'm not sure any other musical event can ever top it.
WCK and I are obsessed -- ABSOLUTELY OBSESSED, PEOPLE -- with Mr. Stinky Feet. We were the first people to arrive at the show, and we got a great spot right up front. At first WCK wasn't sure what to think. She couldn't really believe that the famed Mr. Stinky Feet was actually five feet away from her, and she sat quietly in my lap. Somewhere toward the end of the concert, though, she decided to charge the stage.
OK, there wasn't really a stage, because the concert was held on the floor of a gymnasium. If there had been a stage, though, she would have been dancing right on it. Mr. Stinky Feet did a really good job of not tripping over her, bless him.
I wasn't quite sure what to do about it. I'm always trying to encourage her to be more outgoing, and there she was, dancing onstage with Mr. Stinky Feet in front of about a hundred people. Maybe I should have employed more discipline and told her to sit back down, but instead I got out the camera and got some video. She was just like Courteney Cox in the "Dancin' the Dark" video.
By the way, I tried to post a video of Mr. Stinky Feet, and YouTube wouldn't let me, dang it. You'll have to head over to YouTube and watch it on your own if you are interested.
WCK and I are obsessed -- ABSOLUTELY OBSESSED, PEOPLE -- with Mr. Stinky Feet. We were the first people to arrive at the show, and we got a great spot right up front. At first WCK wasn't sure what to think. She couldn't really believe that the famed Mr. Stinky Feet was actually five feet away from her, and she sat quietly in my lap. Somewhere toward the end of the concert, though, she decided to charge the stage.
OK, there wasn't really a stage, because the concert was held on the floor of a gymnasium. If there had been a stage, though, she would have been dancing right on it. Mr. Stinky Feet did a really good job of not tripping over her, bless him.
I wasn't quite sure what to do about it. I'm always trying to encourage her to be more outgoing, and there she was, dancing onstage with Mr. Stinky Feet in front of about a hundred people. Maybe I should have employed more discipline and told her to sit back down, but instead I got out the camera and got some video. She was just like Courteney Cox in the "Dancin' the Dark" video.
By the way, I tried to post a video of Mr. Stinky Feet, and YouTube wouldn't let me, dang it. You'll have to head over to YouTube and watch it on your own if you are interested.
Staying alive, staying out of the hospital
Today I have a renewed sense, feeling of energy, Monday and Tuesday were a different story.
Monday: The day was cut in half as I was forced to leave the girls at the babysitters house and out of daycare; Raegan was still running a fever so she couldn't go to school. I left work to take them both to the pediatrician the result was they both have sinus infections and Raegan has a stomach virus (Ravyn will soon get the stomach virus, I think I already have iiiittt ..... sorry had to make a run). There are now even more meds in the house the girls antibiotics, and I have called half of the army of doctors I see (am seen by) to get antibiotics to try and head off anything, any virus or infection that might come my way in the next few days. I also will have to stay on the daycare they attend to let me, and all the parents know when a contagious disease is going around (pink eye, strep throat...).
Tuesday: Was tired and struggled through work as I got about 2 hours of sleep last night, Raegan was up most of the night not feeling well, and the Stomach virus has been passed (bad choice of words) to Ravyn.
I think we will hit the gym tonight, if it DON'T KILL ME IT WILL MAKE ME STRONGER.
Monday: The day was cut in half as I was forced to leave the girls at the babysitters house and out of daycare; Raegan was still running a fever so she couldn't go to school. I left work to take them both to the pediatrician the result was they both have sinus infections and Raegan has a stomach virus (Ravyn will soon get the stomach virus, I think I already have iiiittt ..... sorry had to make a run). There are now even more meds in the house the girls antibiotics, and I have called half of the army of doctors I see (am seen by) to get antibiotics to try and head off anything, any virus or infection that might come my way in the next few days. I also will have to stay on the daycare they attend to let me, and all the parents know when a contagious disease is going around (pink eye, strep throat...).
Tuesday: Was tired and struggled through work as I got about 2 hours of sleep last night, Raegan was up most of the night not feeling well, and the Stomach virus has been passed (bad choice of words) to Ravyn.
I think we will hit the gym tonight, if it DON'T KILL ME IT WILL MAKE ME STRONGER.
Tuesday, June 24, 2008
None But the Brave
I've been smiling a lot more lately.
No, I'm not happier. I'm just more vain.
You see, if I'm smiling or animated, I like the way I look. But when I'm writing or reading or thinking or just sitting around doing nothing, the little corners of my mouth curl down into a sad frown. It's a very unattractive look that doesn't necessarily reflect the way I'm feeling.
Even the animated Ellen DeGeneres, who turned 50 this year, commented on how beautiful and serene a 20-something guest actress looked without turning up the corners of her mouth. "If I'm not smiling," Ellen explained, "I look sad or mad."
I was tired of looking sad or mad when I felt happy and serene. The solution was just a syringe of Radiesse away. My dermatologist used my face as a pin cushion and punctured my mouth area 40 times (yes, I counted) with the miracle solution. Some of the punctures were painless, others felt like gnat stings, and a few were like bee stings.
And they say cancer patients are brave.
Vita Interruptus
Right after my initial diagnosis , I met Brad, a fellow "cell mate" with the same disease (MCL, blastic variety) going through a similar regimen at the same time. We became cheer leaders for one another through our treatments and recovery.
After I posted the good news about my six-month clean scans, he sent an upbeat reminder about the positive prognosis for us blastics. Just a few years ago, the diagnosis was a death sentence with a one-year survival rate. But today's aggressive treatments have pushed that time line so far out that, as Brad quipped, we could easily outlast our non-cancer counterparts.
But the very next day Brad reported that his oncologist decided to order a CT scan for a swollen lymph node. He learned yesterday that, ten months after treatment completion, the MCL is back with a vengeance.
A few weeks ago, Brad and his wife decided to "just do it" and pursue their dream of living in the country. They both found teaching jobs at a rural school district and were planning to sign the contracts today.
But sometimes life gets interrupted, or "vita interruptus" as I like to call it. Because of insurance and medical leave issues, they've decided to stay at their current school district. Their dream of country living will be deferred until Brad completes a donor stem cell transplant at MD Anderson.
Please keep Brad and his family in your good thoughts and prayers.
After I posted the good news about my six-month clean scans, he sent an upbeat reminder about the positive prognosis for us blastics. Just a few years ago, the diagnosis was a death sentence with a one-year survival rate. But today's aggressive treatments have pushed that time line so far out that, as Brad quipped, we could easily outlast our non-cancer counterparts.
But the very next day Brad reported that his oncologist decided to order a CT scan for a swollen lymph node. He learned yesterday that, ten months after treatment completion, the MCL is back with a vengeance.
A few weeks ago, Brad and his wife decided to "just do it" and pursue their dream of living in the country. They both found teaching jobs at a rural school district and were planning to sign the contracts today.
But sometimes life gets interrupted, or "vita interruptus" as I like to call it. Because of insurance and medical leave issues, they've decided to stay at their current school district. Their dream of country living will be deferred until Brad completes a donor stem cell transplant at MD Anderson.
Please keep Brad and his family in your good thoughts and prayers.
Monday, June 23, 2008
The House
The house is three blocks west and one block north of my condo. It is more than 100 years old. It has original (we think) trim and floors. There is a French man living there right now. He has two children who are in France with their grandparents for the summer. His wife is already working in Manhattan. (Today I just heard about someone in Manhattan so rich that he has a back yard.) The house was on the market since October and sixty people walked through before we made an offer. Four people lived in a space that we will occupy. Though we want it to accommodate guests, including L's two children and their entourages. The For Sale sign out front still doesn't say "under contract." Our walk-through is Monday morning and then noon is the closing and then we run back to weed and pull down ivy. I picture us running through the empty house, too, shouting, It's ours! It's ours!
Property is theft, my friend D reminds me.
But from whom? From the great C0mmon Good? On the one hand, it is preposterous to think of "owning" anything, since we're going to die. But on the other hand, can everything be shared? Theoretically, yes. My friend R used to live in a commune in Germany. You would sleep in whatever bed was available at night and take whatever clothing fit the next morning. If you don't have all your things with you, if you don't have things, then you're not carrying your history around with you, at least on the outside. You're not dragging around your heirlooms and inheritances. Your DNA does that quite well enough on its own. We are supposed to buy and buy, first because of Sept. 11, and now, to stimulate the sluggish economy. To own more and more. The more each person has, the more there is to separate one person from another, to divide us as we individuate by our possessions. The more there is to use to build walls around each of us, to label everything, Mine mine mine.
Property is theft, my friend D reminds me.
But from whom? From the great C0mmon Good? On the one hand, it is preposterous to think of "owning" anything, since we're going to die. But on the other hand, can everything be shared? Theoretically, yes. My friend R used to live in a commune in Germany. You would sleep in whatever bed was available at night and take whatever clothing fit the next morning. If you don't have all your things with you, if you don't have things, then you're not carrying your history around with you, at least on the outside. You're not dragging around your heirlooms and inheritances. Your DNA does that quite well enough on its own. We are supposed to buy and buy, first because of Sept. 11, and now, to stimulate the sluggish economy. To own more and more. The more each person has, the more there is to separate one person from another, to divide us as we individuate by our possessions. The more there is to use to build walls around each of us, to label everything, Mine mine mine.
The heat is on . . .
In the natural ebb and flow of things, my mind is off cancer (for at least another six months) and on to more critical things, like food.
Check out my food blog to find out one of my favorite hot-weather indulgences.
Check out my food blog to find out one of my favorite hot-weather indulgences.
Why WCK is WCK
When I first started my blog, I was a little nervous about putting information about my child on the Internet. At the same time, I didn't want to have to password-protect my blog, because I wanted other myeloma patients to be able to find me. I've been able to connect with a lot of people this way.
My solution was to call my child"World's Cutest Baby" or WCB. When she was two, I upgraded her to "World's Cutest Kid" or WCK. I've never posted her real name or her photo. Sometimes I wonder if I'm being too paranoid. I have lots of friends who post photos of their kids on their blogs, and everything is fine. Plus, I'm sure I've provided enough information about us that someone who was truly psycho could hunt us down if he/she really wanted to.
Am I being paranoid? Should I just use her name and post her photo? After all, she does have a beautiful name and she IS the World's Cutest Kid, after all.
Then, the other day, I was looking at my report from Google Analytics. This is a free service that tells you all kinds of things about visitors to your blog: How many people visited you, how long they stayed, where they live, things like that. You can look at all of the search terms people used to find you on Google. They range from heartbreaking ("dying of multiple myeloma") to hilarious and bizarre ("is it bad if your rabbit has a bloody nose?"). Most of them are completely harmless, but there were also a few creepy ones in there, too. Apparently, my post about WCK's obsession with public restrooms caused my blog to pop up on Google when someone searched for "video of men going pee in the restroom." Icky. Someone else searched for "video of girls having dex." Usually this kind of typo would make me laugh, but this person viewed two pages of my blog.
Eeeeew. Creepy. I don't want this person looking at pictures of my kid.
So WCK she is. WCK she shall stay.
My solution was to call my child"World's Cutest Baby" or WCB. When she was two, I upgraded her to "World's Cutest Kid" or WCK. I've never posted her real name or her photo. Sometimes I wonder if I'm being too paranoid. I have lots of friends who post photos of their kids on their blogs, and everything is fine. Plus, I'm sure I've provided enough information about us that someone who was truly psycho could hunt us down if he/she really wanted to.
Am I being paranoid? Should I just use her name and post her photo? After all, she does have a beautiful name and she IS the World's Cutest Kid, after all.
Then, the other day, I was looking at my report from Google Analytics. This is a free service that tells you all kinds of things about visitors to your blog: How many people visited you, how long they stayed, where they live, things like that. You can look at all of the search terms people used to find you on Google. They range from heartbreaking ("dying of multiple myeloma") to hilarious and bizarre ("is it bad if your rabbit has a bloody nose?"). Most of them are completely harmless, but there were also a few creepy ones in there, too. Apparently, my post about WCK's obsession with public restrooms caused my blog to pop up on Google when someone searched for "video of men going pee in the restroom." Icky. Someone else searched for "video of girls having dex." Usually this kind of typo would make me laugh, but this person viewed two pages of my blog.
Eeeeew. Creepy. I don't want this person looking at pictures of my kid.
So WCK she is. WCK she shall stay.
paradox
I am afflicted with my usual pre-chemo malaise.
And something else. I made it a goal this year to write as much as I could about cancer and living with mets and yet, today I am sick of being a cancer patient, sick of cancer and everything about it.
Achieving balance has always been a challenge for me.
My computer is sick today. The fan has died and it will only work for a few minutes at a time. Tomorrow it will go unto the shop (how realistic is it to think that I will get it back on the same day?).
Hopefully, by Wednesday, my computer and I will both be up to writing again.
Holly's Hope for a Cure will host its first annual golf outing/dinner/auction on August 15, 2008- West Dundee, Ilinois.
Holly's Hope for a Cure
will host its first annual golf outing/dinner/auction on August 15, 2008
Holly had a passion for golf and she would have truly appreciated an event such as this where she could play the game that she genuinely loved and at the same time increase public awareness about ovarian cancer. The proceeds generated from this event will go toward ovarian cancer research for the development of early detection prevention methods, enhanced therapies and ultimately a cure.
Please join us on August 15, 2008. Play a round of golf. Sponsor a hole. Enjoy a nice dinner. Donate and/or bid on an item at the silent auction. The contributions that we receive will be greatly appreciated and are tax deductible to the extent allowed by law. With your help, we can make Holly's hope for a cure a reality for the estimated 20,000 women who will be diagnosed with ovarian cancer this year alone.
For more info contact: info@hollyshopeforacure.com
Finished my NO SLEEP study
I slept a whole 5 hours and 16 minutes, hibernation I woke scratching myself life a bear taking deep inhales through my mouth and exhaling (draw your own conclusion). I had on two different types of CPat mask so we shall see what comes of this. I did not think I would make the study as I have been feeling ill (very ill) all day coming down with whatever the girls have picked up this week at daycare. Raegan has been running fever, yellow green mucus, coughing, and complaining of a sore throat; Ravyn has been pretty much the same minus the fever and sore throat; I have just been feeling ill and vomiting alot yesterday (running from both places) I will have to get some new antibiotics called in so I don't have to visit the SPA.
Sunday, June 22, 2008
The Mad Weeder Strikes Again
I was indifferent to gardens in my 20s and 30s. I started appreciating them in my 40s. L loves wildflowers and wildflower walks and he has a front yard with columbine (including a hybrid created by his aunt), hens and chicks from his mother's Downstate yard, irises, poppies from his mother, hibiscus, ajuga groundcover, lilies of the valley (see photo at right), vinca and other plants I'm forgetting. In back he has cacti, false Solomon's seal, asparagus, chives, green onions, yucca, day lilies and gingham girls. He has lilac, honeysuckle and forsythia bushes. All this he will leave when he sells his house this or next year, though he will dig up some of the plants for our new place. We started taking rocks from his front yard to put in our yard. We put them in the trunk of his car and then when we got here we weren't sure what to do with them. I would've just let them sit in the trunk for the next week (We close on the house--see photo--June 30). But he didn't want to drive around with rocks in his trunk. So we put the
m in my storage area.This morning I went to Michael McColly's yoga class. I recommend it. What's good is the he talks about breathing and clearing your mind and paying attention to your body. It was odd, though, to be taking a class from someone I know, and to have his familiar voice telling us what to do with our bodies and breathing. My mind buzzed around, as always. The only time I've ever been about to truly concentrate and focus is when I took yoga at the Alliance Francaise. When the teaching was in French, I had to really listen. Alas, the class wasn't always in French. The teacher would let in people who barely knew how to say Bonjour, and then she'd repeat everything in English. That's why I no longer take yoga at the Alliance. When it was an all-French experience, it was like being in a trance, wrapped in a haze of foreign language, and the haze made it feel like you were in a different place.
The yoga room was warm, because for some inexplicable reason, the heat had gone on earlier. I was hot and slightly dizzy. Perhaps the dizziness is caused by gabapentin, which I'm taking to help with the hot flashes. So what should I take for the dizziness?
Yesterday L and I bought flowers in Indiana and today I planted them in two big pots out front. We decided to put them in pots so people wouldn't trample them. Someone walked on some columbine (brought from his yard to mine) and killed it recently. Now I'm afraid that people will pick the flowers because they don't have to bend down to touch them. We shall see. We have cosmos in the middle, and around them I put snapdragons, begonias, and something that looks like impatiens but isn't. At the checkout counter yesterday I noticed special pink garden gloves for sale. With each sale, money goes to Susan G. Komen [foundation] for the Cure--at least $100,000. Both L and I looked at the gloves disparagingly, though I have to admit that $100,000 going to the Komen foundation is better than zero dollars going to the Komen foundation. But I'd rather have $100K going for research on the causes of cancer.
After yoga I walked along Broadway, where there were huge round planters holding flowers in various stages of health. Some pansies were dried up. There were weeds in all the planters and as I walked along on my way to Metropolis Coffee Company and back, I pulled weeds. I love to pull weeds. I love when all their roots (see dandelion taproot on left) come up, clean, like a thorn pulled out of a paw. It is so satisfying. Once last year I had a computer mishap and I was so upset I went in the front yard and pulled weeds. It helped. I used to squeeze the blackheads on my father's back and carefully put them on Kleenex so he could see them, dark on one end and light on the other. That was satisfying, too. You'd think I'd love to clean and would be obsessive about it, but I'm not.
As soon as we close on the house, we're going to hurry to it and start yanking out weeds and pulling off the ivy from the sides. We've already surreptitiously pulled a few lamb's quarters from around the tree in front.
Saturday, June 21, 2008
BEER OF THE MONTH CLUB
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WELCOME TO HEALTHY SPIRITS
We carry over 400 specialty beers, with an emphasis on Belgian products. We are also well known in the Bay area for our Rami's Mommy's line of Middle-Eastern delicacies, especially our hummus, which is featured in some of the top hotels in San Francisco.
Stop by for a visit, and sample our selection of European chocolates and hand-made sandwiches.
Our knowledgeable and experienced staff would be more than happy to help you customize your tasting with appropriate food pairings, or make suggestions based on your personal taste.No Sleep at the Sleep lab
I slept a grand total of 4 and a half hours, arrived at the Sleep Clinic at about 8PM CST (read, watched TV, talked on the phone, filled out paperwork, answered transplant / cancer questions) napped / slept from about 11PM CS with all kinds of wires hooked up to me, I awoke at about 3:30 AM CST got unhooked and was out the door by 4:00 AM.
I need to go pick up the girls and take care of Raegan as she started to run a fever last night and both girls have runny noses (thanks filthy day care germs), I guess I will be wearing my mask around them for the next several days and popping a few extra antibiotics so I can stay out of the Spa.
I'm too dexy
I went to the Cancer Center yesterday. My blood counts were pretty good. Dr. GPO was happy that Dr. H was so happy. He signed the order to get me my new lower dose of Rev (15 mg! Woo!) and told me I could come down to 4 mg of dex. THAT IS ONE PILL. When I started all this, I was taking TEN dex pills at once. I was excited, but then I started obsessing over it when I got home. (Me? Obsess over my treatment? I know. It's shocking.) The plan was to come off the dex gradually, and I've only been on 6 mg for two weeks (well, this weekend makes it three weeks). I haven't even seen any test results that show if the 6 mg is doing its job. I decided to keep myself on 6 mg until I get my results back and see that everything is all right, even though I'll most likely be in total misery tomorrow. I'm glad I have lots of episodes of Dr. Phil in the TiVo.
Yeah, the dex crashes have finally started to catch up with me. Last week during the crash, all I could do by Monday afternoon was lie there and watch Dr. Phil during WCK's nap. I even watched the one where he counseled Danny Bonaduce and his soon-to-be-ex-wife. It was painfully, painfully, painfully annoying, but I was too weak to find a different episode. It made me realize, though, that there are much worse things than dex, such as having to be married to Danny Bonaduce.
Yeah, the dex crashes have finally started to catch up with me. Last week during the crash, all I could do by Monday afternoon was lie there and watch Dr. Phil during WCK's nap. I even watched the one where he counseled Danny Bonaduce and his soon-to-be-ex-wife. It was painfully, painfully, painfully annoying, but I was too weak to find a different episode. It made me realize, though, that there are much worse things than dex, such as having to be married to Danny Bonaduce.
Friday, June 20, 2008
Hot dogs, tiny hot dogs
We had a busy week this week. We went to an event with our moms' group every single morning, although, technically, Monday shouldn't really count. We were supposed to go on a tour of the local fire station, but WCK and I had to leave after about five minutes. Apparently, WCK finds firefighters very scary. I found out later that it ended up being the most FUN EVENT EVER. The kids even got to play with the hose and climb all over the truck. Sigh. We can now add firefighters to the list:
WCK'S List of Scary Things:
1) Vacuum cleaners
2) Fudge-making demonstrations
3) Firefighters
What if I'm someday vacuuming while making fudge and the house catches on fire? WCK will not call for help. I'm doomed.
Anyway, today we went to an early Fourth of July party. The kids made tambourines and danced to patriotic songs. I made these hot dog cupcakes:
The hot dog is a caramel square, warmed in the microwave and then shaped into a hot dog shape. The bun is a circus peanut cut in half, and the ketchup is frosting. I wanted to add mustard, but the yellow frosting I bought ended up being a clear yellowish gel and did not look like mustard. I made them last night, and the circus peanuts absorbed moisture from the frosting and got all mushy. If you're going to attempt these yourself, I'd say don't add the hot dogs to the frosting until the last minute.
My friend Brooke ended up making teeny tiny cookie hamburgers for the party. We didn't even consult each other beforehand. It's probably a sign that we're spending too much time together if we can telepathically coordinate teeny tiny food.
I'm off to the Cancer Center pretty soon. Then a weekend of dex. Arrrrrrrrrrrrgh.
WCK'S List of Scary Things:
1) Vacuum cleaners
2) Fudge-making demonstrations
3) Firefighters
What if I'm someday vacuuming while making fudge and the house catches on fire? WCK will not call for help. I'm doomed.
Anyway, today we went to an early Fourth of July party. The kids made tambourines and danced to patriotic songs. I made these hot dog cupcakes:
The hot dog is a caramel square, warmed in the microwave and then shaped into a hot dog shape. The bun is a circus peanut cut in half, and the ketchup is frosting. I wanted to add mustard, but the yellow frosting I bought ended up being a clear yellowish gel and did not look like mustard. I made them last night, and the circus peanuts absorbed moisture from the frosting and got all mushy. If you're going to attempt these yourself, I'd say don't add the hot dogs to the frosting until the last minute.
My friend Brooke ended up making teeny tiny cookie hamburgers for the party. We didn't even consult each other beforehand. It's probably a sign that we're spending too much time together if we can telepathically coordinate teeny tiny food.
I'm off to the Cancer Center pretty soon. Then a weekend of dex. Arrrrrrrrrrrrgh.
cancer is a chronic illness
My father-in-law, himself a cancer survivor, sent me a terrific article from the New York Times:
"Cancer as a Disease, Not a Death Sentence"
That about sums it up, for me.
I particularly enjoyed the following anecdote, so reflective of my own experience (the drugs are different, except for the Herceptin):
Cross-posted to Mothers with Cancer.
"Cancer as a Disease, Not a Death Sentence"
That about sums it up, for me.
I particularly enjoyed the following anecdote, so reflective of my own experience (the drugs are different, except for the Herceptin):
''Dr. Esteva described a breast cancer patient first treated with a mastectomy and the antiestrogen tamoxifen in 1995. Five years later, cancer had spread to her lungs, prompting treatment with a newer anticancer drug, an aromatase inhibitor. When that no longer worked, her cancer was found to possess a molecular factor, HER-2, and she began treatment with Herceptin, a designer drug tailor made to attack HER-2-positive breast cancer.The article describes beautifully the approach of my oncologist. First treatment A is tried until that stops working, then treatment B and so on. Ideally, treatment would continue in this way until a cure is found . For the time, being, though many of us are living longer than anyone thought we would and with a pretty good quality of life.Herceptin therapy was able to stabilize her metastases for years, “something we had not seen before,” Dr. Esteva said.
The patient now receives a combination of Herceptin and another drug and enjoys a relatively normal quality of life, the doctor reported.''
Cross-posted to Mothers with Cancer.
Thursday, June 19, 2008
The President intends to designate Carolyn D. Runowicz, of Connecticut, to be Chairman of the National Cancer Advisory Board
The President intends to designate Carolyn D. Runowicz, of Connecticut, to be Chairman of the National Cancer Advisory Board.
Sleep clinic on Friday
I have to go to the pseudo spa on Friday night and see why my O2 levels drop so drastically at night. We shall see what this round of test yields, will it tell me that I don't sleep. I already know that I am on a boatload of meds (my neck is bigger now than when I played football thanks to the steroids), and never slept before as I would study after everyone else in the house was fast asleep....... I guess I just have to start school again so I can justify my sleep deprivation.
I am going to have to post a picture of my youngest daughter doing her baby dolls hair, as her big sister does her hair, and I do the big sisters hair..... eat your heart(s) out ex-teammates.
I am going to have to post a picture of my youngest daughter doing her baby dolls hair, as her big sister does her hair, and I do the big sisters hair..... eat your heart(s) out ex-teammates.
Wednesday, June 18, 2008
book review: the deceived*
Holey moley! I was in the mood for a page turner and with Brett Battles’ The Deceived, I got that in spades. This book sucked me in and swept me along in the way only a good, action-filled suspense novel really can.
Tuesday, June 17, 2008
Dem Bones
Today I went to Fancy Hospital to get a baseline of my bone density. I wanted to see if I have the beginnings of osteoporosis, which stooped my grandmother and has shrunk my mother a little. I am post-menopausal, which is when you start losing density. (Cancer led to chemo, which caused early menopause, which can be bad for your bones, and cancer also led to the prescribing of tamoxifen, which, praise be, seems to be good for your bones.) L asked what the difference is between post-menopausal and plain menopausal. I asked that of R, the New Oncologist's physician's assistant, and she said--they're the same thing.
So I'm in menopause and also past it. Time warps.
The woman who scanned me was bright and cheery and had a hardcover copy of The Audacity of Hope in her little scanning room. (This election is the best soap opera ever, she said. Nothing's been watched as closely on TV except Roots.) She said the scan was the easiest test I'd ever take. All I had to do was lie down and let the scan scan me. This scanner-person used to do mammography, which she liked, except when adult children brought in their 95-year-old mothers who didn't know what was going on, and thus would start screaming when their breasts were smooshed between the plates. She said in this job, where people don't disrobe or store their accessories anywhere, she's encountered little old ladies with wads of cash stored in their bosoms and guns stashed in their pockets. (One gun per lady.) They don't believe in banks or credit cards and say they're not going to be victims, she said.
My mother believes in banks and credit cards, though not ATM machines. She has never carried a gun, though in Texas, you can carry concealed weapons if you have a license. (You can buy a semi-automatic assault weapon without a license.). She exercises with a group of other ladies in her building, and they use free weights. She also walks in the nearby shopping mall on a longstanding route that's about two miles long. She calls her exercise class her medicine that's not in a bottle.
Today I didn't go to the little park district gym, so I walked home from Fancy Hospital, which I think is about five miles. I window-shopped and stopped a few times. It was easy and the weather was perfect, about 70, and I stopped for vegetarian empanadas for tomorrow and I ran into a student I'd been thinking of checking in with about a class she's teaching. I also saw two attractive beagles and a very shiny black short-haired dachshund, so it was quite satisfying.
I have told L that when I die I'll come back as a dachshund, and he'll have to ask, Is that you, S? and I'll say yes by barking three times. I drill him on this every so often. We haven't figured out what he'll do next. He's allergic to dander.
So I'm in menopause and also past it. Time warps.
The woman who scanned me was bright and cheery and had a hardcover copy of The Audacity of Hope in her little scanning room. (This election is the best soap opera ever, she said. Nothing's been watched as closely on TV except Roots.) She said the scan was the easiest test I'd ever take. All I had to do was lie down and let the scan scan me. This scanner-person used to do mammography, which she liked, except when adult children brought in their 95-year-old mothers who didn't know what was going on, and thus would start screaming when their breasts were smooshed between the plates. She said in this job, where people don't disrobe or store their accessories anywhere, she's encountered little old ladies with wads of cash stored in their bosoms and guns stashed in their pockets. (One gun per lady.) They don't believe in banks or credit cards and say they're not going to be victims, she said.
My mother believes in banks and credit cards, though not ATM machines. She has never carried a gun, though in Texas, you can carry concealed weapons if you have a license. (You can buy a semi-automatic assault weapon without a license.). She exercises with a group of other ladies in her building, and they use free weights. She also walks in the nearby shopping mall on a longstanding route that's about two miles long. She calls her exercise class her medicine that's not in a bottle.
Today I didn't go to the little park district gym, so I walked home from Fancy Hospital, which I think is about five miles. I window-shopped and stopped a few times. It was easy and the weather was perfect, about 70, and I stopped for vegetarian empanadas for tomorrow and I ran into a student I'd been thinking of checking in with about a class she's teaching. I also saw two attractive beagles and a very shiny black short-haired dachshund, so it was quite satisfying.
I have told L that when I die I'll come back as a dachshund, and he'll have to ask, Is that you, S? and I'll say yes by barking three times. I drill him on this every so often. We haven't figured out what he'll do next. He's allergic to dander.
what inspires you?
I have been feeling kind of burned out lately and completely uninspired.
Perhaps I have been over-extending myself. And as much as I need and want to write about my experiences as a cancer patient, mining that particular vein can be draining (and I am trying really hard not to repeat myself too much in the different venues in which I am writing).
I did my morning pages today, for the first time in a while and I found it to be a tough slog. I started to list the things that inspire me and I realized that I have not really been making a lot of space in my life to do these things. My days have been focused on being productive and, perhaps, when I have had down time, I have not been engaging in the kind of activities that fill me up.
I think this needs to change. Yes, I have deadlines (and the house is a mess) but I think that I might spend less time staring at a blank computer screen, struggling over every word (or surfing the net to avoid writing) if I let myself spend a little time getting inspired.
Here's my list. What would be on yours?
Reading books.
Knitting.
Going for long walks.
Spending time in the arboretum and other beautiful places.
Taking in other people's art.
Listening to music.
Laughing.
Hanging out with friends and family.
Being silly with my kids.
Spending time with my spouse.
Perhaps I have been over-extending myself. And as much as I need and want to write about my experiences as a cancer patient, mining that particular vein can be draining (and I am trying really hard not to repeat myself too much in the different venues in which I am writing).
I did my morning pages today, for the first time in a while and I found it to be a tough slog. I started to list the things that inspire me and I realized that I have not really been making a lot of space in my life to do these things. My days have been focused on being productive and, perhaps, when I have had down time, I have not been engaging in the kind of activities that fill me up.
I think this needs to change. Yes, I have deadlines (and the house is a mess) but I think that I might spend less time staring at a blank computer screen, struggling over every word (or surfing the net to avoid writing) if I let myself spend a little time getting inspired.
Here's my list. What would be on yours?
Reading books.
Knitting.
Going for long walks.
Spending time in the arboretum and other beautiful places.
Taking in other people's art.
Listening to music.
Laughing.
Hanging out with friends and family.
Being silly with my kids.
Spending time with my spouse.
Monday, June 16, 2008
The Non-Anxiety Dream
I know it's boring to hear other people's dreams, but wait. For years and years I've had anxiety dreams about going back to the Miami Herald and not knowing what to do: I don't have a place to sit, I don't know what department I'm in and I can't get the hang of putting a story together. Last night I had a non-anxiety dream about being back at the Herald, and in the dream I thought, This is different from my dreams. I was going to write about Miamians who were nostalgic for the town before it became hip. I was thinking of calling the phenomenon "Miami Blight"; it sounded almost right since the reinvigorating of Miami started with Miami Vice, which city fathers were skittish and worried about allowing to be filmed in their fair city.
The editors (in the dream) said they needed more on Broward and Palm Beach counties. I remember my first few days there (in real life), in 1983, when the features editor said, Just drive around and I did, all over, and I got the idea for my first story on South Beach, which was full of retired needle-trade workers sitting on porches in their rocking chairs. I wrote about old feet. I spent time observing in a podiatrist's office. The highlight was an old Italian lady who came in, triumphant, showing the doctor her corns, which she'd cut off and put in a plastic bag.
The editors (in the dream) said they needed more on Broward and Palm Beach counties. I remember my first few days there (in real life), in 1983, when the features editor said, Just drive around and I did, all over, and I got the idea for my first story on South Beach, which was full of retired needle-trade workers sitting on porches in their rocking chairs. I wrote about old feet. I spent time observing in a podiatrist's office. The highlight was an old Italian lady who came in, triumphant, showing the doctor her corns, which she'd cut off and put in a plastic bag.
Plenty to shout about!
I received great news today:
- My PET and CT scans are CLEAN.
- My blood counts continue to rise.
When I heard the news from Dr. Forman, I felt as jubilant as Tiger Woods after he sunk that difficult putt on the 18th hole.
As Newsweek editor Jonathan Alter wrote in his "My Life With Cancer" article, the semiannual scans are like a visit to the parole officer. "When the scans are clean, it's worth another six months of freedom, though with no guarantee of extra time for good behavior."
My EOS (a type of white blood cell) counts are still abnormally high at 53% (0-4% is normal). I'm also losing weight again (three pounds in two weeks) even though I'm still trying to pack on a few more pounds. (These two things may or may not be related.) At any rate, I'm going off the minocyclin prescribed by my dermatologist to see if it's causing these whacky side effects.
- My PET and CT scans are CLEAN.
- My blood counts continue to rise.
When I heard the news from Dr. Forman, I felt as jubilant as Tiger Woods after he sunk that difficult putt on the 18th hole.
As Newsweek editor Jonathan Alter wrote in his "My Life With Cancer" article, the semiannual scans are like a visit to the parole officer. "When the scans are clean, it's worth another six months of freedom, though with no guarantee of extra time for good behavior."
My EOS (a type of white blood cell) counts are still abnormally high at 53% (0-4% is normal). I'm also losing weight again (three pounds in two weeks) even though I'm still trying to pack on a few more pounds. (These two things may or may not be related.) At any rate, I'm going off the minocyclin prescribed by my dermatologist to see if it's causing these whacky side effects.
i've been here before
Yesterday, we had puppy class.
I have been working really hard with little Lucy, doing our homework and practicing, practicing, practicing. We have 'sit' and 'down' nailed.
Or so I thought.
We didn't walk her before class, as we had been busy with Father's Day activities in the morning and we hadn't wanted to make her too tired. As a result, she was excited and wild from the moment we entered the class.
Despite this, I was pretty confident when the trainer asked if Lucy would be the 'demo dog.' However, although the trainer had a juicy piece of hot dog in her hand, Lucy would not sit or lie down, after several minutes of encouragement.
The trainer passed her back to me and moved on to another dog. I casually signalled to Lucy to sit. She sat. I signalled for her to lie down. She lay down.
Sigh.
Lucy is a very smart dog and in her quieter moments is very obedient. But when she is wild (usually in the evenings, unfortunately for the kids) she is defiant, intransigent and a little bit out of control.
And when she is sweet, she is very sweet indeed.
Reminds me of someone else I know and love.
When D., my youngest son, was a toddler, I wanted to knit a hat for a friend's baby. I tried to measure D.'s head. He refused to cooperate. I kept trying for weeks. I would ask nicely, try sneaking up on him when he was distracted or firmly tell him to sit still. I begged and pleaded. All to no avail.
A few months later, when the hat was finished (I guessed at the size) and mailed off to the recipient, I pulled out my tape measure to check my progress on another project. D. approached me and sweetly asked, "Mama, do you want to measure my head?"
To this day, he wants me to measure his head whenever I am using a tape measure.
I have been working really hard with little Lucy, doing our homework and practicing, practicing, practicing. We have 'sit' and 'down' nailed.
Or so I thought.
We didn't walk her before class, as we had been busy with Father's Day activities in the morning and we hadn't wanted to make her too tired. As a result, she was excited and wild from the moment we entered the class.
Despite this, I was pretty confident when the trainer asked if Lucy would be the 'demo dog.' However, although the trainer had a juicy piece of hot dog in her hand, Lucy would not sit or lie down, after several minutes of encouragement.
The trainer passed her back to me and moved on to another dog. I casually signalled to Lucy to sit. She sat. I signalled for her to lie down. She lay down.
Sigh.
Lucy is a very smart dog and in her quieter moments is very obedient. But when she is wild (usually in the evenings, unfortunately for the kids) she is defiant, intransigent and a little bit out of control.
And when she is sweet, she is very sweet indeed.
Reminds me of someone else I know and love.
When D., my youngest son, was a toddler, I wanted to knit a hat for a friend's baby. I tried to measure D.'s head. He refused to cooperate. I kept trying for weeks. I would ask nicely, try sneaking up on him when he was distracted or firmly tell him to sit still. I begged and pleaded. All to no avail.
A few months later, when the hat was finished (I guessed at the size) and mailed off to the recipient, I pulled out my tape measure to check my progress on another project. D. approached me and sweetly asked, "Mama, do you want to measure my head?"
To this day, he wants me to measure his head whenever I am using a tape measure.
Sunday, June 15, 2008
Ask For Help
I started this blog as a way to address the emotional aspect of a cancer diagnosis. My website www.appendix-cancer.com deals with disease and treatment information about the cancer, but an equally important aspect of a cancer diagnosis that also requires attention is the impact the disease has on our minds, emotions and our souls. From my perspective, the emotional ramifications of a cancer diagnosis far out way the physical pain and discomfort associated with surgeries and chemotherapy. The medical treatment in the end is the easy part.
Cancers like appendix cancer that have poor prognosis statistics, high recurrence rates and long and intense medical treatments are especially associated with depression, post traumatic stress disorder and anxiety. Through my own cancer journey I've at times struggled with depressions, fear and anxiety. Over my 7 year history I've had a few symptoms of PTSD. It's been really hard at times. I know I've communicated with those who have never had cancer who feel that after we complete treatment and have a few normal follow-up exams we should be happier and more grateful for our lives than we were before cancer. That we should praise God and thank our lucky stars for being cancer-free, even if only for a short time, and that we should move on leaving cancer behind with a more grateful and appreciative demeanor.
But those of us who have gone through cancer know that's not how it works. It's not that simple, it's not that easy.
What has made me really think about it is nothing actually related to cancer. A man my age I've known casually for many years, about 9 years, killed himself this week. Within 24 hours of his daughter's (and my daughter's) high school graduation, less than a week from Father's Day. I talked to him just a few weeks ago. Should I have said more? Could I have started a conversation that would have led to him talking about his depression? Could something maybe have happened as a result of that conversation that would have prevented his final act? I think very many people are thinking what I am. His funeral was standing room only. So many people cared.
At first I was so angry with him. His daughter's graduation will always be associated with his suicide in her mind. Her celebrated entrance to college away from home will be marred by his absence. His wife, kids, friends and extended family will probably forever wonder if they could have said or done something to change his mind, to have prevented his suicide. I can't imagine how they felt today, Father's Day. They just buried their dad two days ago; their dad who chose not to be present, who chose to leave them, who chose not to take his daughter to college, who chose not to see his younger daughter graduate. I continue to try to wrap my mind around that. My greatest fear was that of abandoning my children. How could someone choose to forever leave their kids?
But then I thought more. About some of the really dark days I've had. About the desperation I've felt at times. About the trouble I've had at times in my cancer journey facing just one more day. I don't know what his demons were or how long he lived in darkness, but if his life was even more desperate and dark than mine felt at it's worst, maybe I can understand his being desperate for a way out.
I just wish he had been able to tell someone how desperate he was. I wish he had been able to share with someone how dark he felt his world had become. I wish he would have asked someone for help. All I can think of now was how permanent his solution was to what could have been a temporary problem. I so wish we could turn the clock back. I so wish he could have a "do over". For his kids, for his wife.....even for me. For all of us left behind who wish he would have let us help him.
I talk to cancer patients sometimes who wish the cancer would just come back and do them in so they could quit living in the limbo of fear and uncertainty. At least they'd know what they were dealing with, at least they could have the enemy in site. I understand that. I talk to people almost daily who are struggling with depression and PTSD.
I just want to say here that it's okay to seek help and support for the mental issues we all deal with, to ask for help finding light in our darkness. Seeking help in discovering our light is just as important as battling the physical implications of cancer on our bodies. It's okay to ask for help. Please ask for help on all fronts of the cancer battle. Do it for yourself. Do it for the people who love you. Please know that your heart, soul and mind deserve as much care as your body.
This is a link to a service that includes a hotline number:
Referral Information for Cancer Patients and Caregivers .
This is part of the American Psycosocial Oncology Society that is in part the work of Jimmie Holland, the woman I admire and met in San Diego who has made it her life's work to help us with the psychosocial aspects of a cancer diagnosis. Please use this service if you are struggling. It's there for those of us fighting cancer. It's there to help brighten a dark place.
Cancers like appendix cancer that have poor prognosis statistics, high recurrence rates and long and intense medical treatments are especially associated with depression, post traumatic stress disorder and anxiety. Through my own cancer journey I've at times struggled with depressions, fear and anxiety. Over my 7 year history I've had a few symptoms of PTSD. It's been really hard at times. I know I've communicated with those who have never had cancer who feel that after we complete treatment and have a few normal follow-up exams we should be happier and more grateful for our lives than we were before cancer. That we should praise God and thank our lucky stars for being cancer-free, even if only for a short time, and that we should move on leaving cancer behind with a more grateful and appreciative demeanor.
But those of us who have gone through cancer know that's not how it works. It's not that simple, it's not that easy.
What has made me really think about it is nothing actually related to cancer. A man my age I've known casually for many years, about 9 years, killed himself this week. Within 24 hours of his daughter's (and my daughter's) high school graduation, less than a week from Father's Day. I talked to him just a few weeks ago. Should I have said more? Could I have started a conversation that would have led to him talking about his depression? Could something maybe have happened as a result of that conversation that would have prevented his final act? I think very many people are thinking what I am. His funeral was standing room only. So many people cared.
At first I was so angry with him. His daughter's graduation will always be associated with his suicide in her mind. Her celebrated entrance to college away from home will be marred by his absence. His wife, kids, friends and extended family will probably forever wonder if they could have said or done something to change his mind, to have prevented his suicide. I can't imagine how they felt today, Father's Day. They just buried their dad two days ago; their dad who chose not to be present, who chose to leave them, who chose not to take his daughter to college, who chose not to see his younger daughter graduate. I continue to try to wrap my mind around that. My greatest fear was that of abandoning my children. How could someone choose to forever leave their kids?
But then I thought more. About some of the really dark days I've had. About the desperation I've felt at times. About the trouble I've had at times in my cancer journey facing just one more day. I don't know what his demons were or how long he lived in darkness, but if his life was even more desperate and dark than mine felt at it's worst, maybe I can understand his being desperate for a way out.
I just wish he had been able to tell someone how desperate he was. I wish he had been able to share with someone how dark he felt his world had become. I wish he would have asked someone for help. All I can think of now was how permanent his solution was to what could have been a temporary problem. I so wish we could turn the clock back. I so wish he could have a "do over". For his kids, for his wife.....even for me. For all of us left behind who wish he would have let us help him.
I talk to cancer patients sometimes who wish the cancer would just come back and do them in so they could quit living in the limbo of fear and uncertainty. At least they'd know what they were dealing with, at least they could have the enemy in site. I understand that. I talk to people almost daily who are struggling with depression and PTSD.
I just want to say here that it's okay to seek help and support for the mental issues we all deal with, to ask for help finding light in our darkness. Seeking help in discovering our light is just as important as battling the physical implications of cancer on our bodies. It's okay to ask for help. Please ask for help on all fronts of the cancer battle. Do it for yourself. Do it for the people who love you. Please know that your heart, soul and mind deserve as much care as your body.
This is a link to a service that includes a hotline number:
Referral Information for Cancer Patients and Caregivers .
This is part of the American Psycosocial Oncology Society that is in part the work of Jimmie Holland, the woman I admire and met in San Diego who has made it her life's work to help us with the psychosocial aspects of a cancer diagnosis. Please use this service if you are struggling. It's there for those of us fighting cancer. It's there to help brighten a dark place.
Losing My Mind
Pieces of my mind are loosening, falling. I could not think of the name of my cousin's eldest child tonight. I was emailing all the relatives to see if they wanted the coffee table and a painting that I have that were my grandparents' and I couldn't remember his name. I kept seeing his face. I knew his brothers' names and I couldn't think of his. I looked at the family email address and I could tell that it was based on the three boys' names and that it started with J. I said to L, name some names that start with J and then he did and I remembered. Jonathan. How could I forget?
Yesterday I was telling someone that I was a grandmother, that L's son married a woman with a child, and then I drank with my students (one drink, a black and tan) and three hours later I was about to say to the same person, I'm a grandmother. I thought it to myself, of saying it to her, and then I realized I'd said it earlier. But what if I hadn't realized it?
Today in my writing group we were asking one another questions and I said, No one asked me a question, then T reminded me she had just asked me a question. That's why I was answering it, why I had been talking. How could I forget?
There is chemo brain, it is real, we know because it was in the New York Times. I am too young to be senile. I forget words. I say posy instead of peony because I know the word is there, out there in the world, but I can't think of it. I slow my speech because then I have more time to find the words. I see them up there, ahead in the distance, like my cousin's face. Floating just beyond my reach. How will I be able to teach if I can't find words at the end of the sentence?
I just read the NYT article again and I see that tamoxifen can make it worse. I'm taking fish pills, they're supposed to help. I think about meditation. I think about taking a meditation class. When I was drinking my black and tan I said I had decided to take an improv class but I'd forgotten that I'd decided to and my student (my student who is 20 years younger and who does not have chemo brain) laughed in a bemused way and asked, How can you forget what you decided?
Yesterday I was telling someone that I was a grandmother, that L's son married a woman with a child, and then I drank with my students (one drink, a black and tan) and three hours later I was about to say to the same person, I'm a grandmother. I thought it to myself, of saying it to her, and then I realized I'd said it earlier. But what if I hadn't realized it?
Today in my writing group we were asking one another questions and I said, No one asked me a question, then T reminded me she had just asked me a question. That's why I was answering it, why I had been talking. How could I forget?
There is chemo brain, it is real, we know because it was in the New York Times. I am too young to be senile. I forget words. I say posy instead of peony because I know the word is there, out there in the world, but I can't think of it. I slow my speech because then I have more time to find the words. I see them up there, ahead in the distance, like my cousin's face. Floating just beyond my reach. How will I be able to teach if I can't find words at the end of the sentence?
I just read the NYT article again and I see that tamoxifen can make it worse. I'm taking fish pills, they're supposed to help. I think about meditation. I think about taking a meditation class. When I was drinking my black and tan I said I had decided to take an improv class but I'd forgotten that I'd decided to and my student (my student who is 20 years younger and who does not have chemo brain) laughed in a bemused way and asked, How can you forget what you decided?
Audacious
The entrance to the auditorium at the Hollywood Presbyterian Medical Center has a plaque with the definition of the word "audacious."
Audacious:
Instead of simply reading "Pole Dancing," I performed in a hospital gown and red feather boa with my trusty IV pole dance partner. We strutted and gyrated to Robert Palmer's "I Didn't Mean to Turn You On" and "Addicted to Love."
I was in a "fight or flight mode" for the entire 36 hours before the performance. But, once I got on stage in front of an audience of 300 who'd come to see "The Big C," I realized I was having fun. When the audience started clapping and whooping, I really got into it.
Best of all, I witnessed some amazing performances and met some passionate, positive people.
Audacious:
- bold or daring; fearless
- not restrained by a sense of shame or propriety; rudely bold; brazen
Instead of simply reading "Pole Dancing," I performed in a hospital gown and red feather boa with my trusty IV pole dance partner. We strutted and gyrated to Robert Palmer's "I Didn't Mean to Turn You On" and "Addicted to Love."
I was in a "fight or flight mode" for the entire 36 hours before the performance. But, once I got on stage in front of an audience of 300 who'd come to see "The Big C," I realized I was having fun. When the audience started clapping and whooping, I really got into it.
Best of all, I witnessed some amazing performances and met some passionate, positive people.
I had "met" the beautiful model and "actorvist" Sharon Blynn online at her
"Bald is Beautiful" website before meeting her in person at the Big C event.
"Bald is Beautiful" website before meeting her in person at the Big C event.
Michael Goldberg, Sharon, Susan and talented writer Beverly Ward
Our producer, Christian Meoli, with Michael
I finally got to meet the delightful Christine Pechera ("Saffron Butterfly"), the CoH
patient who met her bone marrow donor at the 2008 Celebration of Life.
I finally got to meet the delightful Christine Pechera ("Saffron Butterfly"), the CoH
patient who met her bone marrow donor at the 2008 Celebration of Life.
I was so happy to find out that Cindy and George were proud,
not embarrassed, by my audacious behavior.
Someone was videotaping the event, so I hope to receive a copy.
not embarrassed, by my audacious behavior.
Someone was videotaping the event, so I hope to receive a copy.
Happy Father's Birthday
A few days ago, I overheard WCK telling her grandma, "Easter is over, but it is almost Father's Birthday, and then it will be July Time." Happy Father's Birthday to all you dads!
We have a really fun water park near our house. They have a cool program on weekday mornings called "Splash 'n Play" where they only admit kids under five (well, and their parents, of course) for just $5 per kid. A water park visit is much more stress-free when you don't have to worry about an enormous eight-year-old accidentally jumping on your three-year-old. Last summer, we didn't find out about this until halfway through the summer, so this year I vowed we would go all the time. It was supposed to start on June 2. On June 4, WCK and I got up bright and early, got into our swimsuits, spread on the sunblock, and headed for the water park. We got there to discover ... the water park was closed. They'd decided to wait one more week before opening and hadn't announced it. I had to explain it to WCK, and it was the saddest thing ever. We managed to salvage the morning by running through the sprinkler in the back yard, but it just wasn't the same.
This morning, we thought all three of us would go to the water park as part of our Father's Day celebration. The newspaper said we'd have a nice morning and storms in the afternoon. Clouds began gathering as we were leaving the house around 11 a.m. Did we let that stop us? No! Our family is brave. We are hardy. We are wildly optimistic. We are, clearly, fools. About 20 minutes after we stepped into the (freezing) water under black, scary clouds, the lifeguards made us all get out and go home because of lightning.
WCK was devastated AGAIN. When she woke up from her nap, she wanted to go back to the water park (which was supposed to re-open after the storm), but it was only 65 degrees outside, so we had to say no. I explained that we'd do something even better: We'd take Daddy out to dinner! We'd give him his presents and the card she made for him! She still cried bitter tears. I imagine her talking to a psychiatrist about this in 30 years: "My parents kept getting me excited about the water park when I was three, but then we always had to leave." It reminds me of that old Deep Thought by Jack Handey:
"One thing kids like is to be tricked. For instance, I was going to take my little nephew to Disneyland, but instead I drove him to an old burned-out warehouse. 'Oh, no,' I said. 'Disneyland burned down.' He cried and cried, but I think that deep down, he thought it was a pretty good joke. I started to drive over to the real Disneyland, but it was getting pretty late."
We have a really fun water park near our house. They have a cool program on weekday mornings called "Splash 'n Play" where they only admit kids under five (well, and their parents, of course) for just $5 per kid. A water park visit is much more stress-free when you don't have to worry about an enormous eight-year-old accidentally jumping on your three-year-old. Last summer, we didn't find out about this until halfway through the summer, so this year I vowed we would go all the time. It was supposed to start on June 2. On June 4, WCK and I got up bright and early, got into our swimsuits, spread on the sunblock, and headed for the water park. We got there to discover ... the water park was closed. They'd decided to wait one more week before opening and hadn't announced it. I had to explain it to WCK, and it was the saddest thing ever. We managed to salvage the morning by running through the sprinkler in the back yard, but it just wasn't the same.
This morning, we thought all three of us would go to the water park as part of our Father's Day celebration. The newspaper said we'd have a nice morning and storms in the afternoon. Clouds began gathering as we were leaving the house around 11 a.m. Did we let that stop us? No! Our family is brave. We are hardy. We are wildly optimistic. We are, clearly, fools. About 20 minutes after we stepped into the (freezing) water under black, scary clouds, the lifeguards made us all get out and go home because of lightning.
WCK was devastated AGAIN. When she woke up from her nap, she wanted to go back to the water park (which was supposed to re-open after the storm), but it was only 65 degrees outside, so we had to say no. I explained that we'd do something even better: We'd take Daddy out to dinner! We'd give him his presents and the card she made for him! She still cried bitter tears. I imagine her talking to a psychiatrist about this in 30 years: "My parents kept getting me excited about the water park when I was three, but then we always had to leave." It reminds me of that old Deep Thought by Jack Handey:
"One thing kids like is to be tricked. For instance, I was going to take my little nephew to Disneyland, but instead I drove him to an old burned-out warehouse. 'Oh, no,' I said. 'Disneyland burned down.' He cried and cried, but I think that deep down, he thought it was a pretty good joke. I started to drive over to the real Disneyland, but it was getting pretty late."
I should . . .
I sit on the chaise loungesipping a solitary mimosa,
soaking in the sun
like a clever cat.
And then a load of "I shoulds"
washes over me
like unwashed laundry.
I should deadhead the David Austin roses.
I should decapitate the Shasta daisies.
I should pour sunflower seeds into the bird feeder.
I should, but I don't.
Instead, I stroke the cat,
sip my mimosa and
fall asleep in the sun
with no regrets.
Instead, I stroke the cat,
sip my mimosa and
fall asleep in the sun
with no regrets.
[Anyone who has seen me in the last three weeks knows that I've been in a frenzied, accomplish-everything-you-can-before-manic-Monday mode. Aren't you relieved that I slowed down today?]
Saturday, June 14, 2008
Black Cohosh
is not recommended for people taking Tamoxifen or people who are susceptible to breast cancer. That doesn't sound right. Can you have a tendency toward cancer? Mebbe so. But the physician's asst. who works with the oncologist suggested gabapentin , which seems like the Swiss army knife of prescription drugs: it does everything. Slices, dices, files your fingernails, cures bipolar and epilepsy, alleviates pain, helps with numbness (which is why I'd taken it before, after Taxol), shines your shoes and washes your dishes. Which may be why the company that makes it was sued fby the Dept. of Justice for marketing it as a cure-all. When I took it before, I got cotton mouth, which I don't have. Yet.
I was spooked by the Severe Yoga Incident and didn't go back to the park district on Thursday to work out. I got back on the horse on Friday and went to the park district's dingy little gym and treadmilled and did weights. For a while in autumn an old guy with a foreign accent would sit on the seat of the leg-strengthening machine, reading the Sun-Times and asking what certain words meant. I haven't seen him for a while. A lot of people come in with their Ipods inserted and don't say anything to anybody.
Meanwhile, Iowa is under water. So difficult to believe. And sad.
I was spooked by the Severe Yoga Incident and didn't go back to the park district on Thursday to work out. I got back on the horse on Friday and went to the park district's dingy little gym and treadmilled and did weights. For a while in autumn an old guy with a foreign accent would sit on the seat of the leg-strengthening machine, reading the Sun-Times and asking what certain words meant. I haven't seen him for a while. A lot of people come in with their Ipods inserted and don't say anything to anybody.
Meanwhile, Iowa is under water. So difficult to believe. And sad.
US Panel Mulls Minimum Breast Cancer Hospital Stay
By Kim Dixon
WASHINGTON (Reuters) - A congressional panel on Wednesday said it has bipartisan support for a bill requiring health insurers to pay for a minimum 48-hour hospital stay after breast cancer treatment, to combat what critics call "drive-through" surgeries.
About 20 U.S. states have such a minimum insurance requirement for women undergoing mastectomies or lumpectomies to treat breast cancer. Advocates of the bill say federal legislation is needed to equalize coverage across the nation.
"Having access to appropriate medical care should not be dependent on the state you live in," said Rep. Frank Pallone, the New Jersey Democrat who chairs the health subcommittee of the Energy and Commerce Committee.
Breast cancer is the most common form of cancer among women after skin cancer, killing more than 41,000 women a year in the United States, according to the Centers for Disease Control and Prevention.
The bill has bipartisan support and 219 co-sponsors in the House of Representatives. A companion bill in the Senate has 19 co-sponsors thus far.
Women with breast cancer often undergo a mastectomy, in which the entire breast is completely removed, or a lumpectomy, a less drastic surgery that is followed by radiation therapy.
About two-thirds of the 125,000 women who undergo mastectomies in the U.S. annually leave the hospital a few hours after surgery, without regard to their health, because their insurance will not pay for a longer stay, according to testimony from Dr. Kristen Zarfos, a fellow at the American College of Surgeons.
But America's Health Insurance Plans, an industry group for most major health plans such as UnitedHealth Group and WellPoint Inc , called the bill unnecessary.
"We do not think that it is a good idea on the state level or the federal level to be putting clinical guidelines into statute," group spokeswoman Susan Pisano said.
Most health insurers treat each case on a "medical necessity" basis. "We think there are women who are satisfied with shorter lengths of stay," she said.
DISEASE WINNERS AND LOSERS
Singer-songwriter and breast cancer survivor Sheryl Crow also testified at the House panel's hearing, expressing support for a second bill that would provide $40 million annually for five years for federal research into environmental factors linked to breast cancer.
"There is little financial incentive for anyone else to do this research," Crow told lawmakers.
She added: "I have no idea why I got breast cancer or what I can say to others on how to prevent it."
Some Republicans and a federal health official said the research bill would tie the government's hands and interfere with science.
"In general, prescribing a specific way of conducting federal research could have the unintended consequence of narrowing the field of inquiry and promoting an unwise use of precious resources," said Deborah Winn, associate director of epidemiology and genetics at the National Cancer Institute.
Because the bill establishes a panel to set research priorities, it could hamper current efforts, Winn said.
A Senate companion bill includes changes related to the peer review process that could make a compromise possible, Winn said.
The committee's top Republican, Rep. Joe Barton of Texas, said he is worried that Congress is too susceptible to the power of disease groups.
For example, advocates for breast cancer are among the most organized and best funded advocacy groups, Barton said. If Congress responded to their entreaties, it would be "picking winners and losers in terms of who gets the most research. Where does that leave liver cancer? ... What about autism ... diabetes?" he asked.
*****
Lifetime Television has put this bill on their Web page with a petition drive to show support. Last year over half the House signed on. To show your support, please click on the link below. If you choose to sign the petition you will not need to give more than your name, state, and zip code.
Lifetime TV breast cancer petition - support the bill
******
WASHINGTON (Reuters) - A congressional panel on Wednesday said it has bipartisan support for a bill requiring health insurers to pay for a minimum 48-hour hospital stay after breast cancer treatment, to combat what critics call "drive-through" surgeries.
About 20 U.S. states have such a minimum insurance requirement for women undergoing mastectomies or lumpectomies to treat breast cancer. Advocates of the bill say federal legislation is needed to equalize coverage across the nation.
"Having access to appropriate medical care should not be dependent on the state you live in," said Rep. Frank Pallone, the New Jersey Democrat who chairs the health subcommittee of the Energy and Commerce Committee.
Breast cancer is the most common form of cancer among women after skin cancer, killing more than 41,000 women a year in the United States, according to the Centers for Disease Control and Prevention.
The bill has bipartisan support and 219 co-sponsors in the House of Representatives. A companion bill in the Senate has 19 co-sponsors thus far.
Women with breast cancer often undergo a mastectomy, in which the entire breast is completely removed, or a lumpectomy, a less drastic surgery that is followed by radiation therapy.
About two-thirds of the 125,000 women who undergo mastectomies in the U.S. annually leave the hospital a few hours after surgery, without regard to their health, because their insurance will not pay for a longer stay, according to testimony from Dr. Kristen Zarfos, a fellow at the American College of Surgeons.
But America's Health Insurance Plans, an industry group for most major health plans such as UnitedHealth Group and WellPoint Inc , called the bill unnecessary.
"We do not think that it is a good idea on the state level or the federal level to be putting clinical guidelines into statute," group spokeswoman Susan Pisano said.
Most health insurers treat each case on a "medical necessity" basis. "We think there are women who are satisfied with shorter lengths of stay," she said.
DISEASE WINNERS AND LOSERS
Singer-songwriter and breast cancer survivor Sheryl Crow also testified at the House panel's hearing, expressing support for a second bill that would provide $40 million annually for five years for federal research into environmental factors linked to breast cancer.
"There is little financial incentive for anyone else to do this research," Crow told lawmakers.
She added: "I have no idea why I got breast cancer or what I can say to others on how to prevent it."
Some Republicans and a federal health official said the research bill would tie the government's hands and interfere with science.
"In general, prescribing a specific way of conducting federal research could have the unintended consequence of narrowing the field of inquiry and promoting an unwise use of precious resources," said Deborah Winn, associate director of epidemiology and genetics at the National Cancer Institute.
Because the bill establishes a panel to set research priorities, it could hamper current efforts, Winn said.
A Senate companion bill includes changes related to the peer review process that could make a compromise possible, Winn said.
The committee's top Republican, Rep. Joe Barton of Texas, said he is worried that Congress is too susceptible to the power of disease groups.
For example, advocates for breast cancer are among the most organized and best funded advocacy groups, Barton said. If Congress responded to their entreaties, it would be "picking winners and losers in terms of who gets the most research. Where does that leave liver cancer? ... What about autism ... diabetes?" he asked.
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Lifetime Television has put this bill on their Web page with a petition drive to show support. Last year over half the House signed on. To show your support, please click on the link below. If you choose to sign the petition you will not need to give more than your name, state, and zip code.
Lifetime TV breast cancer petition - support the bill
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