01/30/2017

last week i had my 10 year mammo & ultrasound. i think it was the least stressful of any to date. how fucked up is that? the tech was new (again) but nice. she actually told me as we went along that everything was looking good, that there was nothing new showing up, pointed to which img was last year, which was this year... i couldn't see any difference. achetson came in to do the US. not a tech. that's usually where i have found i stress the most. anyway, she's talking and looking, points out the implant on the image JIC i don't recognize it. she remembered the cyst that's been there 2 years now and found it easily. she said it'd shrunk from a 4.something to a 3.6 i think. that's gotta be millimeters. i still haven't got my 10yr onco scheduled, but i did get a letter saying i could schedule my MRI. i'm torn. i know several women who've gone 10yrs and then was diagnosed again. so if i skip the 10yr MRI i don't jinx myself? do i do the 10yr and then stop? just keep up with the mammo/USs? also means i stop seeing the onco as well if i stop the MRI. it's save me 1200$/year to not have those 2 bills. but money shouldn't be the decision maker. planning on having a big 10 year party. sadly not on the 6th of feb, but after so i'm ok with it. more affected by the fact that feb6 is a monday this year and cafe juanita is of course closed. so we won't be there on the day this time. a first in the 10yrs. actually has me pretty upset. weird how some simple routines are so important to daily life. i totally get the OCD where you touch stuff 3x, or have to turn a handle 8x or whatever! anyway, i'm trying to keep the group small, and i'm not dissing anyone if you're reading this wondering where your invite is. i can't invite everyone. but they went out and while i sent it out 3 months later than i had wanted, pretty much everyone who has to travel can't make it. not surprised tho with late notice. but there are also a few ppl who i really *really* wanted to be there and can't. i guess i have to deal with it. matt agreed to doing something for just the 2 of us that would be really really special since we won't be at CJ on teh 6th this year. curious to know what it is as that's now a week away. i'm trying frantically to get a top for the skirt i found to wear to the party. trying to channel my inner audrey (hepburn) & grace (kelly). not sure i'll be able to do it but i do have a couple options that will work. i realize i'm babbling. i'm a little distracted by the fact that the 1st 18months of this blog seem to be missing. also torn coz there are posts i should've written but didn't, and that has me feeling like i've cheated you. i haven't been "keepin' it 100". and there are a lot of things i wanted to tell you. good and bad. way back when i thought about turning this into a book. using the posts and then commenting on them, kinda thing - with stuff i left out, or a hind-sight deal...but i really didn't have the time to do it without really disrupting our lives and matt was too busy to be able to pick up what i would've had to drop so i never did. now i really wish i had, it would've also kept me honest with posting here. and i would probably have 'published' it next month. oh well. too late now to go back and try to remember shit from 10yrs ago. i have enough problems remembering 10mins ago! i've cycled thru all the docs in the past 10yrs except my GP. bless him, he's younger by only a wee bit than me, but he's younger. hopefully he'll outlive me. my OB's NP who i loved left at 4yrs i think - i'm sure i must've written a post for that. that really affected me. my onco left at 8yrs. my 2nd NP left at 8yrs. - seeing a new gal in feb my internal US study ended at 9yrs. - i'll have to talk with OB about this my shrink left at 10yrs. - seeing a new guy in feb i've spent a lot of time thinking over the past couple years about getting the other breast removed and just doing implants. i honestly don't really like the things but i don't have enough belly for either TRAM or the DIEP. the TUG is where they take the fat from the inside quad (thigh) muscle. the adductor? whichever squeezes in, anyway. but word is pretty conclusive this would affect my biking. the BUT flap, well, they take it from the bottom of the bottom so sitting...yeah. you get the drift. they really don't like doing this if they can avoid it. if i'm going to do this i need to be prepared to not give up the gigs which could be uncomfortable but i can't afford to lose a year at this point. when we did this i had my hesitations but chose to do it for logical reasons. but it has never gone away, everytime i look in the mirror. and i feel it inside me still. there was a slight unlevel aspect which welk said we could do a teeny little pull to even them out but i never did it. a few weeks back i noticed it needs a slightly bigger pull now to make them even. so if i did this i'd have level boobs which will always stay perky no matter what. but i'll have to do it soon before clarfeld and welk decide to retire. which probably doesn't leave me much time. also hesitant on this coz it means ins will not pay for the MRI so obviously they'll be no more, and no mammo. but i could get an US. atcheson (ok, i really have no idea how she spells it) would do the US if i wanted on a yearly basis. as any relationship matt & i have had our ups and downs. but we're still together. amazing i know. no, still not married. more scared the dipshit now in office will kill me (WWIII or the like) within the next 4 years or as long as he's in power than i am of another cancer diagnosis. cancer for my 40th birthday a new hip for my 50th birthday seems surreal it's been 10 years.

aug 2013

i went in for my yearly mammo 2 weeks ago. all's clear. acheson came in and we chatted. i asked if the machine tech had been upgraded as it didn't feel as if i'd been squished as much but she said no, i must just be getting used to it :-S need to make an appt w/the ob. but right now i'm in jury duty so that will have to wait. i did learn that jenny had a baby and moved back to TX since last aug. that actually really upset me. she was always so on top of things, thorough, and willing to listen. it's going to be really hard to go see someone else. i'm crying now just thinking about it. i really odn't want the headache of having to teach someone new all about me. i really hope i don't have to keep telling her to 'check the chart and see what jenny did' which is my fear. i guess i'll let you know how it goes!

03/14/2013

they say cancer can bond a relationship to the strongest it'll ever be. they also say it can be ripped apart. i thought i had one but it turns out i had the other.

i finally admitted to matt how upset i was about and that i regretted not continuing this blog and turning it into a book. i wish i had kept posting even though i knew it wouldn't turn into anything else.

we've had issues on and off. getting diagnosed changed me. i became much more patient and relaxed but matt became more agitated and easily upset. i thought that overall things were good between us, but i found out last year i was mistaken. we both have our issues. our baggage. our fears and insecurities. add the last year of this whole house remodel and it's been very strained. the only good thing about all the F-ing house stuff is that our relationship is no worse off than it was almost a year ago to the day. it's no better, but it's not worse.

i won't go into details in this public forum. just know that it has taken me this long to face my denial. (longer than i was diagnosed to be fiar) i have no idea what the future holds for me but i have a very good feeling that my life will be very different in the near future. i deserve to be good to me. i deserve to have someone be good to me. and there are too many things gone awry in this relationship over the years to easily get past them. i'm not saying we can't, but we both have to want it badly and be willing to work on it together. so far we've been on different pages as far as that goes.

if we stay together it'll be a dream. that's what i've always wanted. if we split up his life will be different only in the fact that i won't be in it. i'm not happy making this decision, i'm scared of what will happen. i will have to learn how to live alone again, how to find happiness in working a 40hr/week for a pittance of pay that won't cover rent and bills. i guess i'll get a lot of reading done though. that will be my source of entertainment (and cable). i'm not trying to get pity, even though as i read this it sounds like it. i'm only trying to get down the emotions, and thoughts before i forget them, like i have so many things related to my cancer and subsequent years.

funny. when i started to type i started to cry. it's the 1st time since i told matt that either we're a couple and we commit to each other - and i wasn't talking about running out and getting married, or we were just friends. i didn't need an answer then, but i deserved an answer sooner than later. he took it all much better than i thought he would. in fact he wanted to give me a hug afterwards. but i refused it. that's part of how i was able to stay in denial of it all. he had his appointment as he calls it this afternoon and i suspect htey spent time talking about this.

however he hasn't said 1 word to me since i told him he had to make a choice. i think you can cut the tension in the room with a knife as they say. felt really odd sitting on the couch near each other. it's like, do i say anything? what do i say? i don't want to impose on his space. but of course if we're only going to be friends this isn't really the way to do it, either.

he's about to leave for rehearsal. i'm glad i have thursdays off as i'm playing with another orchestra this cycle. i'll take some pics as many as i can and then have dinner. i think i'll stay up and watch tv until he gets home. maybe 1 day soon i'll be update this blog with good news.

aug2012

i can't believe i haven't written in almost 2 years. something must be wrong. well, there's actually a lot wrong. so much has happened since aug 2010's mammo. a quick catch up i think is in order. i had my 4.5yr mammo aug 2011. i had my 1st real scare since 2006. the tech saw something and wanted to make sure, which i appreciate. she was very good about showing me the imgs as she took them, what she was looking at and all that. atcheson wanted to do an ultrasound JIC and i think i would've insisted if she hadn't. turns out it was just a fatty cyst kinda thing. i never had the 'why me' thoughts. and i never had the 'why didn't i' thoughts, which was good. i wondered if anything ever came up if i'd regret my choices. i was surprisingly at peace knowing what i would be in for, and i knew instantly how i would proceed. still, i was reduced to tears of nerves. and this was the 1st where i wasn't feeling dread before i went in! go figure. the remainder of the year was a bit of a challenge for me. quite emotional as i hit all those 5yr marks. 5 years since my 1st mammo, since biopsy, since diagnosis, since lumpectomy... my 5yr MRI was at swedish 1st hill. not sure what happened to the ppl who used to be at overlake, but no one was able to find them. but that was fine. i didn't mind going over to cap hill. it gave me a chance to have coffee with my friend shannon who works there (she's actually a breast surgeon). i found out swedish is a leader in the specs for the breast MRI machines. anyway, i had 2 complaints which i passed along to the tech and shannon both. 1 was they did not have heated robes! I KNOW!!! the other was there was no talkback for me to let the guys running the tests if there was a problem. they told me to 'lift me feet into the air' if i needed them to stop for any reason. easy enough to do as i'm laying on my tummy, but still. shannon found out who was reading that day and left a message for him to call me with the results that day. by the time i returned home there was a message from him letting me know everything was fine. next up was my 5yr with crossland, my onco. i got the high-five, pun intended. and in a couple weeks i have my next mammo. i actually logged into my blogs to start working on the food blog. i really need to get caught up or it'll never earn me any money. but a lot has happened this spring. all related to all the physical issues i've had over the years. the gals at group know, as do some mutual friends matt & i know, thanks to matt's talking. i've talked to 1 of my friends, but not 1 who really knows matt. and of course, our individual shrinks. which has led to the 2 of us seeking a couples person. i really don't have the energy to get into it all right now. but i know i will need to share and of course you'll be the 1st to hear it all. i'd still like to turn this into a book, but i've had so little support in that area, and as i have just realized i have missed almost a whole year of info to you, i wonder if i'd be able to do that anymore. i'll think about it. i wonder how much help it'd be anymore anyway, with technology advancing in leaps and bounds.

9/26/2010

a fantastic new discovery!

http://www.msnbc.msn.com/id/39257572/ns/health-cancer/

Gene studies zero in on breast, ovarian cancer risk

Scientists find DNA region that acts like 'volume control' for deadly disease

By KATE KELLAND

updated 9/19/2010 1:46:26 PM ET

LONDON — Scientists have found a region of DNA that can increase or decrease the high chance of breast cancer linked to a particular gene variant — a finding that could help doctors keep a closer eye on women most at risk.

The findings were published in Nature Genetics journal on Sunday along with two other separate studies linking this same region and four others to ovarian cancer

The breast cancer study centered on women who carry a faulty BRCA1 gene, which significantly raises the risk of developing certain cancers. On average, around 65 percent of women carrying a faulty BRCA1 gene will develop breast cancer, and around 40 percent will develop ovarian cancer, by the age of 70.

The studies found that if a woman with a BRCA1 fault also carries a "risk version" of a DNA region known as 19p13, her breast cancer risk may be even higher still.

Area works like 'volume control' "We've found a DNA region that acts like a volume control — to turn up or down the risk of developing breast cancer from faults in the BRCA1 gene," said Antonis Antoniou of Cambridge University, who led the work on the first study.

"Our discovery is the first step in a much larger study to identify genetic factors that modify breast cancer risk in women carrying BRCA1 mutations, and ultimately could help us assess the risk for each woman and monitor for the disease."

Breast cancer is the most common cancer among women, with more than a million new cases diagnosed worldwide each year.

In a separate study, the same 19p13 region was also shown to increase the risk, to a lesser degree, of ovarian cancer in women who are not carriers of a BRCA1 fault.

"This is important because it suggests that women who carry certain versions of this DNA stretch could benefit from closer monitoring for both breast and ovarian cancers," said Simon Gayther at University College London, who led that study.

A third study conducting by scientists from Europe, the United States, Canada and Australia found four other separate genetic regions also associated with ovarian cancer risk in the general population.

Results might help early detection Ovarian cancer is the fifth most common cancer among women in developed countries. An estimated 230,000 women worldwide are diagnosed it each year and it kills around 130,000 each year.

Most women are not diagnosed until after the cancer has spread, because its symptoms are hard to detect, and nearly 70 percent of those with advanced disease die within five years.

"These latest findings raise the possibility that in the future, women...who are at the greatest risk of developing ovarian cancer because they carry these newly discovered DNA variants can be identified and given closer surveillance to look for early signs of ovarian cancer when it is most treatable," said Andrew Berchuck, a professor of gynaecologic oncology at Duke University Medical Center, who worked on the study.

"It also suggests that preventive approaches could be targeted toward these women."

.

8/3/2010

wow. what a night. group tonight was, shall we say, interesting at least. there was 1 good thing tonight. one of the gals copied off an article i hadn't seen. here it is.

http://www.pnwlocalnews.com/east_king/bel/lifestyle/99123604.html

Founder of Belladonna Breast Imaging Center wants to make a difference in women's lives

By LINDSAY LARIN
Bellevue Reporter Staff Writer
Jul 27 2010, 11:35 AM · UPDATED 

Bellevue resident Marita Acheson, M.D. founded the newly opened Belladonna Breast Imaging Center (BBIC) to make a difference.

Knowing that early detection of cancer can lead to a prolonged lifespan in patients, Acheson worked to create a facility where she could offer state-of-the-art technology and a warm atmosphere to put her patients at ease. She opened BBIC in Bellevue.

"This has been my dream for a long time coming now," Acheson said, as she sat in the lobby of her new space. "I like to think of this center as a place where women can come and feel safe. Women feel enough anxiety when having a mammogram or biopsy, it's our job to provide a friendly and calm atmosphere that may help alleviate some of those fears."

The center incorporates integrated digital technology used for screening mammograms and diagnostic examinations, ultrasound exams with shear wave elastography, ultrasound guided and stereotactic biopsies, fine needle aspirations, cyst aspirations and pre-operative guide-wire localizations.

The England-born Acheson was formally president of the Breast Imaging Associates at Overlake Hospital Breast Health Center for nine years. She has now opened the only independent female owned center dedicated entirely to breast imaging services in the region.

Acheson has gained such a respected reputation for her patient care, a previous patient of hers travels all the way from Utah to Bellevue each year for her annual mammography screening.

"I build a relationship with my patients that revolves around trust," she explained. "They are the reason I work in this field (of medicine)."

Acheson encourages all women, regardless of ethnicity, to schedule their annual mammogram, whether at her clinic or another in the area.

"It doesn't matter if a new patient speaks another language. We will work with them. We want to make the entire experience is as simple, yet effective as possible," she explained. "When I opened this new center, I had the opportunity to handpick my entire staff to ensure a high level of service for my patients. Together, we have created something very unique for this area and its right here in Bellevue."

According to the American Cancer Society, more than 192,500 women were diagnosed with breast cancer in the U.S. in 2009. Acheson reads over 7,000 breast imaging exams annually using the best in digital technology and recommends women begin annual mammography screening at the age of 40, unless breast cancer runs in the family or symptoms appear. The most common symptoms of breast cancer include lumps, dimpling of the breast tissue and fluid out of the ducts.

"My hope is that more women would learn about the importance of scheduling your annual mammogram and self-breast exams. Early detection is key. I can't emphasis that enough," she said.

Belladonna Breast Imaging Center PLLC is located at Eastside Professional Center, 1810 116th Avenue NE, Suite 101, Bellevue. Appointments can be made by calling 425-974-1044. For more information visit www.bbic.com.

other than that the news is stunning. amy, the 'new' kathleen, came in to talk with us. but before she got there carol started to tell us something but couldn't. suzi had to finish. they were fired last week as facilitators of the group. in a nutshell overlake has a committee of several people, 1 of which is amy, and then a subcommittee and they all decided to 'streamline' all teh support groups. everyone currently working is now out, including the patient navigator from ACS. gilda's house has been brought in to facilitate all the support groups now. they think it'd be best if they (grps) can be as consistent with each other as possible. yeah right. like a cancer support group can be like any other cancer support group.

everyone at the meeting tonight was furious. not only that they're changing the days the grp meets. they basically just lost everyone who's been coming and will be starting fresh. several people stated outright in front of amy 'i won't be here'. i said i'd be willing to try it but i'm not happy about any of this.' and TBH i'm really torn. i feel i should give it a try, but hell, we weren't respected in this choice so why should i give them any of my time?

amy said they've started looking at this about 6 months ago. yet no word was mentioned. no questions were asked. no surveys were handed out about what we thought about anything. not even a 'hey, we're thinking of changing the dates to wednesday...'.

my concerns if we try to continue on our own:
1. location.
-several people have willingly offered up their houses on a rotating basis. the problem is making sure everyone knows whose house it's in that week
-no new people will know about us and be able to find us
2. publicity
-we'll obviously not be the overlake support group so we'll need a new name
-how do we get the word out about us: with no new people coming in i fear we'll end up stagnate. it's been the newbies that come in and teach us about all the latest and greatest treatments.

i have to give the gals who were there tonight credit - i don't know how many daggers we threw at amy and she did take them well. she offered to put forward some of our questions. she offered to email to carol/suzi the person in charge's email but no, we wouldn't let her out of our sight until she just told us and we wrote it down.

we did notice she didn't take 1 note. not 1 word was written down or recorded by her. that was not lost on any of us. i think we should - and i'll bring this up at the next opportunity - send an email with constructively phrased thoughts on this whole process and send it to her but Cc the other gal with the 1st sentence being something like "seeing as you didn't write anything down we wanted to make sure you didn't forget what we talked about".

a little bit we know about gilda's house - you have to register to be in any of the groups/classes/stuff they offer. there's no money, but i have to go through an orientation meeting, fill out forms, answer a survey... and no newly diagnosed person is going to want to go through that. in fact, technically they're not supposed to just show up at a meeting. so if i'm diagnosed tues morning and i learn there's a meeting tonight but i can't go until i do all this i'm going to say 'fuck that'. likewise if i just showed up technically they're supposed to say 'you can't be here until you do this other stuff'. how screwed is that?  now clearly most social workers will let the person stay, but at the end of the meeting a newly diagnosed person will most likely not return if theyr'e told they have to do all that shit.

the person they're planning on facilitating most likely will never had had cancer, let alone breast cancer. and it could be a man.

yeah.

i think i see a new group forming. we just have to 1-find a place and keep our core together and 2- figure out a way to publicize.

i think i'm going to need an ambien tonight. my brain is just still firing on all cylinders with this news.

and i should write a brief note up about the week of july 18th - all my tests. matt's mom and aunt have been here and i've been trying to get our france trip posted since we got back so it's been a bit crazy.  i'll still write it but i'll let you know everything's fine.

29 july 2010

recently a news story made print. it's very exciting and i want to share it with you.

http://www.cnn.com/2010/HEALTH/05/31/breast.cancer.vaccine/index.html

Breast cancer vaccine successful in mice

By the CNN Wire Staff

June 1, 2010 3:56 p.m. EDT

(CNN) -- Scientists at Ohio's Cleveland Clinic are touting a new prototype vaccine to prevent breast cancer as "promising." This follows tests performed on mice by the researchers. The scientists said a single vaccination was shown to prevent breast cancer tumors from forming in mice, and also stymied the growth of existing tumors.

The vaccine contains a protein found in most breast cancers, but not found in healthy women, except during lactation, according to Dr. Vincent Tuohy, the study's principal investigator and an immunologist at the Cleveland Clinic's Lerner Research Institute. Tuohy says this allows the vaccine to direct a woman's immune system to target this protein without damaging healthy breast tissue.

"We can protect women from breast cancer, but if it destroyed their normal breast, it's an unacceptable side-effect, so we had to avoid that," Tuohy said.

Tuohy now wants to move forward in testing the vaccine in human patients. Enrollment could begin next year according to the Cleveland Clinic. Tuohy acknowledges cancers have been cured in mice before without that success transitioning to humans, but thinks this vaccine's chances of success are "promising."

"It's kind of like an application of immunologic judo, using the natural changes that occur in a woman's needs," said Tuohy. "A decrease in the use of the breast for breastfeeding, and an increase in the breast's risk of developing tumors. We're taking advantage of that. That hasn't been done before."

The inspiration for the research comes from the childhood vaccination program that has been successful in preventing diseases like polio and measles, according to Tuohy.

"It just struck me as a giant hole in our health care that we don't have preventive vaccines that mimic the childhood vaccination program for adult diseases like breast cancer," said Tuohy.

The tests have been restricted to mice so far. Tuohy said the U.S. Food and Drug Administration will guide researchers through what type of toxicity studies they want done, and usually they require other species -- rats, for example. Tuohy says he doesn't anticipate any difference in results between mice and rats, but he would not second-guess the FDA on their request for tests on different species.

The FDA has granted approval to two cancer-prevention vaccines: cervical and liver cancer. However, these vaccines target viruses, while the one tested by the Cleveland Clinic targets cancer formation. If any human testing proves successful, the strategy would be to vaccinate women 40 and over as well as younger women with a heightened risk of breast cancer. Tuohy says there is no funding for human trials at this point, but it has been applied for. However, he speculates it will take at least 10 years to get the vaccine to normal, healthy women at risk of developing the cancer.

"We have to try it. It looks to me to be extremely promising, and until I see a better idea I'd like to try this."

the gist of this is, for those of us who aren't science minded and needed it explained:
cancers create 'bad' proteins which buddy up to, and overpower the good proteins we already have. this vaccine looks for these bad proteins and kills them. while each  cancer (and there are actually a number of various breast cancers) creates a different protein, the vaccine can, in time, be tweaked to recognize each of them. and not just breast cancers, theoretically any cancer. 1 day, probably not in our lifetime, but perhaps our childrens', cancer will be eradicated. i can only hope.

5/6/2010

another news item of importance this week.  it was published in the seattle times last sunday

personally i hope she bankrupts the company for what she went through. what they did was just wrong.

http://seattletimes.nwsource.com/html/nationworld/2011756766_cancersuit02.html

Ex-worker: Genetic test led employer to fire her

A complaint against an energy supplier is among the first to claim dismissal based on genetic info.

By STEVEN GREENHOUSE

The New York Times

DOUGLAS HEALEY / AP

Pamela Fink, seen during a media interview at her home, says she was targeted after telling bosses of test results.

After one of her two sisters was found to have breast cancer, Pamela Fink rushed to have a genetic test to see whether she had a predisposition for such cancer, and the answer came back yes.
Soon her other sister also contracted breast cancer and had chemotherapy and a mastectomy. Alarmed by these developments, Fink, 39, a mother of two who lives in Fairfield, Conn., decided to have a preventive double mastectomy, fearing she also would contract breast cancer and might die from it.
When she returned from surgery, she said, her company started giving her fewer responsibilities and then demoted and ultimately fired her.
Last week, she filed one of the first complaints claiming illegal dismissal under a new federal law that prohibits employers from considering someone's genetic background in firing, hiring or promotions.
"Getting laid off really added insult to injury," said Fink, who was director of public relations for Stamford, Conn.-based MXenergy, a natural-gas and electricity supplier. "I know that having that surgery was lifesaving for me and important for my children and also important for my employer because it meant I was not going to get sick."
The complaint Fink filed with the Equal Employment Opportunity Commission (EEOC) raises new questions about when and whether employers can fire or demote employees when they learn the employees' genetic information. The Genetic Information Nondiscrimination Act of 2008 prohibits companies and health insurers from requiring genetic testing, asking for genetic information or using it against employees.
Peggy Mastroianni, the commission's associate legal counsel, said most of the 80 complaints filed since the genetic law took effect five months ago seemed to involve cases in which employers had improperly acquired or disclosed genetic information. But Fink's case alleges a more serious offense: an improper firing because of it.
Her lawyers said that if she loses her case, it could discourage other workers from going for genetic testing about particular illnesses and from having surgery in response to such testing, steps that are good for their health.
Derede McAlpin, a spokeswoman for MXenergy, said, "As a matter of policy, we do not comment on personnel matters." But she added, "We are confident that when the facts are revealed, the company's actions will be seen in a different light and will be seen as being warranted."
Fink worked for MXenergy for more than four years. Confident she had a good relationship with her supervisors, she informed them she had a genetic marker for breast cancer and thought she needed surgery.
"She disclosed this to her employer, she had preventative surgery, and that was the primary catalyst for her being fired," said her lawyer, Gary Phelan. "Not only is that genetic information, but it's action taken based on that information."
Fink said she had excellent performance reviews — "has done an exemplary job working to keep CEO exposed in a positive light," one review said — and her supervisor told her if marketing-department layoffs were ordered, Fink would be the one person she'd keep.
"It's a very intense company that requires 24/7 accessibility," Fink said. "I always felt I had gone above and beyond and been available, but maybe this thing with the gene testing made them think I wasn't going to be accessible to them."

4/26/2010

i'm losing my mind.
literally.

the last year and a half, two years, things have gone missing in this house. it's no secret my skill at multi-tasking has gone to hell in a hand basket since i was diagnosed. thank you cancer (chemo) brain!

seriously, several relatives have had alzheimers, and i'm convinced there's a link between the cancer and alzheimers as 'chemo brain' as they call it resembles early onset alzheimers.

stuff has gone missing. my stuff. stuff that never leaves this house unless i'm wearing it, and they are now no longer in this house.

1st to be missed (but perhaps not actually the 1st item to go missing) was my white ipod in my pink ribbon case.
then my black jacket.
then a pair of black boots.
now 3 pieces of music.

there are a couple of smaller things i remember but not having actually written them down i don't remember what they are LOL HAHAHAHAHA what a joke that is!

matt's trying to calm me down and tell me not to worry that it'll be ok. he looked for the music and didn't find it. i pulled it out of the folder on saturday afternoon when i was getting quartet music out. i set it down either on my instrument case or on teh edge of the table. both are right behind where i was standing, next to each other. if i set it on my case i would've moved it to the table when i picked up my instrument to go to my gig sat. night. i thought i had put it into my viola case with the rest of monday night's music. but at rehearsal tonight i realized i didn't have it with me. guess i left it on the table. i get home and it's not there. not only is it not there, it's not in the room. it's not in the kitchen, the walk-in closet, bathroom, bedroom, hallway, living room and i didn't look in the dining room but i haven't gone in there since we got home. - - but if i'm losing time or memory or whatever they call it, maybe i should look in there.  it's not in my case, the stand case, teh bag i took to the gig, the bag with other orchestra music...

haven't found the ipod. matt thinks i wore it out and if fell out of my pocket. as far as i know i never wore it outside the house. i only wore that one while i was doing chores around the house. i hadn't even done any travelling with that one.

my jacket - black, short, long sleeves. i got it at nordstrom rack. now TBH i don't really need another jacket - i have not gone out and replaced it with something else. but i liked that jacket. it was waterproof, warm, comfortable, lightweight to carry but heavier than if i was wearing a cardigan. matt thinks i wore it somewhere and left it. if i actually wore it somewhere i needed it to wear home so i wouldn't have left it. if someone broke into my car there'd be evidence.

my boots - i wore on new years eve.  i sat down on teh blue bench in the entry and removed them. i noticed they were starting to peel (manmade uppers) near the seams but i could still wear them a few more times. they are so comfortable. i got them at nordy's for about 70$ more than 5 years ago and have loved them. anyway, they are no longer in the house. i have since been through nordy's and there's nothing even remotely similar anymore. i should try DSW, but this is all beside the point. i took them off and if i hadn't put them away right then i would've within the next few days. but they aren't there. i can't find them anywhere in the house.

the music sat/today was just the icing on the cake i guess. my snapping point. i just sat down on the floor in the middle of the music room and started to cry. not sure how long i was up there. squeak was a good kitty and came in to help. but without opposing thumbs there's only so much she can do.

i don't know what's happening. it scares me. i don't know if i'm really 'losing time' or whatever, or if someone else is moving them around. is someone coming into the house and hiding things on me? i'm not accusing - i did think of the maid. but she had an ipod long before me, she has a really nice jacket, she doens't play music (besides she hasn't been here since saturday) and she wears a different size shoe. so why would she take any of those? if matt has people in to audition instruments they stay in teh living room. so if everything was in there maybe that could be a possibility, but he hasn't had anyone in to explain the boots and maybe the jacket.

there are times when something will happen and i don't remember doing it. for example i'll be taking pics for matt's ebay. i always take the 'same series' of pics for each like instrument. meaning i put a tpt down a certain way, take the pics in the same order as all the other tpts, turn the tpt over and do the same order of pics etc...   i'll be going along and do say side #2, and realize i must've taken side #1 if i'm currently on side #2, but i have no memory of taking them, and it was only a couple minutes ago. i look back through the camera and sure enough the images are there. but i'll be dumbfounded at how they got there.

3/17/2010

happy st. patty's day to ya!

today i 'watched' a nepeherectomy being done at swedish hospital by a robot. yes you read that right, there's a surgical robot out there.

there were 3 observers to the surgery who tweeted (twittled?) as things went along, including taking and posting of pics. the procedure was a side-entry, less invasive procedure by dr. james porter who perfected this way of doing it, and the patient will only stay 2-3 days in hospital as opposed as a week+. i must say it was quite impressive.

here's a link to the transcript.
http://www.mynorthwest.com/?nid=646&sid=299316
and
http://www.slideshare.net/TizoMA1/twitter-feed-of-live-kidney-surgery-at-swedish

here's a story about it
http://digitaljournal.com/article/289237

Digital Journal

Live Tweeting Kidney Operation

1 hour ago by ■ Renee Hendricks (who's my way cool neighbor)

Just when you thought live tweeting couldn't get more interesting, Swedish Hospital in Seattle, WA brings it to a whole new level.

Seattle, United States - The diagnosis of kidney cancer is passed on to over 50,000 Americans each year. Swedish Hospital in Seattle, WA has been part of one of the latest advancements in the progress toward treating this disease. The hospital's Robotic-Assisted Surgery program, directed by urologic surgeon James Porter M.D., is home to the da Vinci - a state-of-the-art bit of technology that helps doctors perform a more precise operation than with standard surgery. The da Vinci allows the surgeon to perform a rear-approach partial nephrectomy - this makes the precise removal of the disease portion of the kidney possible. The advantage to this type of surgery is the ability for patients to recover at a quicker rate and to retain a majority of their kidney functionality.

The month of March is National Kidney Month and to honor this month's theme, Swedish Hospital gathered a group of "tweeters" from the hospital and had them observe Dr. Porter performing this critical operation using the da Vinci technology. The "tweeters" live tweeted the entire operation from beginning to end. The premise behind the event was to be able to give more people an inside look at the advances that have been made in modern surgery. The surgery occurred on Wednesday, March 17, 2010 at 7:40 am and was a complete success.

The patient who received this surgery is a 69 year old male originally from California. His renal mass was found as part of a follow up for an abdominal aortic aneurysm. The referral to Dr. Porter and Swedish hospital was made by a urologic surgeon who had previously trained under Dr. Porter. The live tweeting event was conducted under the full consent of the patient.

To review the entire procedure on the Twitter news feed, the following Twitter accounts were listed as part of the event:



- - -
and here's something else in today's news, a little closer to home.

http://www.express.co.uk/posts/view/163367/Ice-cold-gas-kills-breast-cancer

ICE-COLD GAS 'KILLS' BREAST CANCER

By Victoria Fletcher

UK NEWS

BREAST cancers can be killed off by being frozen with streams of super-cold gas, scientists have discovered.

And, in a major breakthrough, the “ice-ball” created around a tumour by the injections not only kills it off but ensures the cancer does not return.

Fine needles are used to inject the freezing gas around the tumour in a technique known as cryotherapy, which means the patient does not need invasive surgery and suffers no major discomfort.

The trial was carried out on 13 patients who had all refused to have breast operations to remove their tumours. They remained cancer-free up to five years later when doctors saw no sign of the disease returning and noted no significant complications.

Dr Peter Littrup, interventional radiologist at the Barbara Ann Karmanos Cancer Institute in Detroit, who led the study, said the findings suggested freezing tumours was both safe and effective.

“Minimally invasive cryotherapy opens the door for a potential new treatment for breast cancer and needs to be further tested,” he said. “When used for local control and – or – potential cure of breast cancer, it provided safe and effective breast conservation.” Although cryotherapy has been used by surgeons for years to treat disease, it always used to require a major operation.

But the invention of tiny needles has allowed radiologists to start using the process. Studies have already shown that it can help kill off prostate tumours, although it is still not recommended for widespread NHS use.

In the latest experiment, cancer cells are destroyed within minutes of the injections and the patient suffers little pain or scarring. The study was presented at the Society of Interventional Radiology’s 35th Annual Scientific Meeting in Florida yesterday. 

The team followed the 13 patients for five years – the length of time in which patients should not suffer a relapse in order for a treatment to be classed as effective. More than 45,000 women are diagnosed with breast cancer every year in the UK. Most are given surgery to remove either the tumour or the entire breast. 

This is followed by weeks of radiotherapy, chemotherapy and various drug treatments depending on the type of breast cancer. More than 80 per cent of women diagnosed with breast cancer will survive for at least five years using these treatments and more than 70 per cent will survive for a decade.

In recent years, radiologists have been looking at a number of new ways in which they can “intervene” in diseases using a range of procedures. 

These doctors, known as interventional radiologists, have tested techniques including “heating” tumours with lasers and radiation. Last night, breast cancer charities welcomed the new study, but said it was far too early to say if the technique would ever be available to all patients. 

Dr Caitlin Palframan, from Breakthrough Breast Cancer, said: “We are a long way away from knowing whether cryotherapy has potential as a treatment option. Where appropriate, surgery remains a gold-standard treatment and surgical techniques continue to improve all the time.”

But surgery can have a profound psychological impact on patients, and some refuse it despite the consequent risks. Cryotherapy has been used for years to treat various skin conditions such as warts, moles and skin cancers. It has also been shown to work on other cancers, including cancer of the lung, liver and cervix.

Although it is only minimally invasive there are side-effects and these can include damage to surrounding healthy tissue.

3/2/2010 - 3/4/2010

(tues) it's been 48 hours since i got that fateful letter. i took an ambien to help sleep. i was afraid i'd be up all noight alterntely crying/worrying/brain going 100 mph trying to figure out what i'll do in different scenarios. while not outright sobbing, i did cry for almost the rest of the night until i fell asleep.

yesterday (mon) i spent almost all day on the phone. i called my OB's office, Welk's, Clarfeld's and Crossland's, and emailed my GP. i let them know i got a letter from regence denying coverage of my MRI and i'll need a letter from them to appeal their decision.

Jenny at my OB's office called back almost immediately and wanted to know what the letter said. we talked for a bit, she said there'd be no problem having Dr. Otto sign something. if i would please email her the pdf i made of the letter she'd write up something and have Dr. Otto sign it, and get in touch with me tomorrow morning at 9.30, when she was expected back in the office.

this morning, (tues) i got an email just after 9.30 from her. she included a copy of the unsigned letter, which looks good to me. i asked her about the sentence referring to the MRI in Jan 2010 - and did we have to potentially do this every year or is there a way we can encompass all those to come. sadly, but of course it'd be too easy to do otherwise, we have to fight each year every year. ok, at least i know to expect this again, and i can also remind the other doctors of this.

(mon) kathy at Welk's office was appalled, too. she was more than helpful in either typing up welk's transcription or writing something for him to sign. she was all over being helpful, but welk felt he was too far removed from this and probably shouldn't be involved. unless it was like a 5yr interval when he definitely suggests MRIs to check on the - oh what's the word... - to see how the implants are doing. integrity of the implants maybe what i'm looking for? so i get it and of course i'm not going to push him or my GP. yes they are involved, but not like my oncologist or surgeon or OB. those are the holy triad as it were. and one can include dr Watts, the radiologist who diagnosed me. wherever she is.

then i get a call from jaime, Dr Crossland's nurse/assistant. she said she called the breast clinic people and they told her they had been paid. so that brings up a whole new slew of questions. so she's telling me they got paid, there's no reason to appeal and the letter's got to be a mistake. well, ok. i'll go with that. except for the fact that i have a letter in my hands telling me something else, and if i don't agree with it that i need to do the following...  and that requires letters from doctors. at one point she accused me of yelling at her, and if i hadn't been crying so hard maybe i would've been. but i can honestly say that for that phone call i was so upset and bawling that i didn't have the lung capacity to yell at anyone!

by this time it's almost 3. boy the day went fast! i called matt i was so upset, and luckily he was going to be home soon. i was crying so hard because i was so frustrated with jaime (i admit i'm not sure how she spells her name) he could hardly understand me. i managed to get through the rest of the day with a few teary eyes but no actual tears.

(tues) i actually got a little more work done on tuesday not related to this issue, but i did spend time on the phones, on email, taking notes of ideas etc that might be useful if it comes to higher appeals or actual legal stuff. that, sleeping in late, and having to be at the gym by 2.30, then a quick shower and dinner then it was off to my support group kept my mind occupied.

the big thing about tues is i was on the phone with customer service at regence. here's the skinny: (yes it's been copied. why keep typing it out when it's already been done?)

---
i talked to laura in lewiston ID @ ext.4803
- it doesn't matter if scrip written or services received was actually called 'diagnostic' or were, for my part actually diagnostic.  they [the insurance suits] 'looked at studies' that show the test/procedure/whatever doesn't significantly benefit the person so it's considered 'investigational'.
[forget it's the only test out there right now with the best chance of diagnosing me at early stage BC in my left breast. it's only my life we're talking about!]

- in 2009 regence's "investigational services" list was changed to be in accordance with blue cross/shield. in 2009 and earlier regence was required to write off investigational, but now they aren't, so they are requiring the patient to pay for it.
[forget that my appt was made in 2009 and my MRI was actually done before they finished their decision. and this affects anyone who has insurance under the BC/BS umbrella]

- if they pay the 'whoever' - in this case overlake breast care-  and then decide it's investigational, they can indeed request a "payback"  and apparently hospitals et al are more than willing to fork the $$ back over.
[which is what they plan on doing and then re-bill me with the entire amt]

-was told in jan 2009 the provider [overlake breast imaging] had to take a write-off for my MRI

-even if the letter is a mistake it is off to appeals to make regence see it's a mistake. she did give me the web address for the form if i want it now as well as putting it in the mail today for me: regence.com - search forms for 'appeal'
---

(tues) i took all my notes and my laptop to group. we were about 1/2 through the meeting and i hadn't said much. but TBH there wasn't much to add yet, the main concern with 1 gal was not knowing what chemo she was going to have to go through and the fact that she didn't want to have a port. sadly none of us had been in the situation of having a port so everything we could tell her was stuff we learned from others who weren't at tuesday's meeting. i digress. about 1/2 way through suzi kinda bumps me and says 'you've been awfully quiet'. "yeah, i've been avoiding." i launched into the letter and everything.

i must say it felt good, the compassion and concern the others passed along. everyone was shocked. a few of them are under the blue cross/shield so they were happy to hear so they could be prepared. i shared with them what the gal from regence said, what a few of my friends in medical billing had commented, what a friend said who actually works for 1 of those medical insurance companies said, along with the plans for mailing personal and medical letters to (insert long list of names/offices here). along with having already contacted the docs to get letters from them. i also shared my frustration with jaime and they were appalled at that behaviour. i must say in her defense until this i've never had an issue with her, in fact she's been extremely helpful in all other incidents or whatnot.

and we joked about how, when they started to offer suggestions, i quickly grabbed my laptop, propped up 1 foot on the opposite knee to form a little table for the laptop. i quickly started typing away. they had some great ideas i hadn't thought of, and offered 'refinements' to a few i had. the rest of the meeting was pretty much focused on this topic/event in general and me specifically.

at the end of this post i will copy over my notes. i have also received a few thoughts about what to include along the voice of the insurance company. i will include those as well. so please keep reading until we get there! :-)

(wed) before i had a sip of my coffee in the morning, in fact if i could've done it without opening my eyes in bed i would've, i called overlake breast imaging billing dept. suzi suggested i call them, let them know i paid my share, that i know they were paid by regence, and i know regence is going to ask for the money back and make me pay. and that i plan on contesting that. the purpose for this is they will flag my file. they will know ahead of time if they return the money to regence then they may very well not see a dime of the difference. i thought this was an Exssssssseleeeeent idea. :-)

my 1st call went to denise's vmail so i left a message. about 15 mins later i decided to try again. i really wanted to reach them before they could have a chance to return any money that they had received. and the 2nd call got through to Beth.

she pulled up my file and found the bill. she took note that i had paid what regence said was my portion and confirmed they hadn't gotten it yet (no surprise). and we decided while talking that she was going to watch for it and return it because "while regence did pay us, they paid us the wrong amount, so until we've taken care of that i'd rather you keep your money". she understood my hesitancy, and that i was going to contest anything over the current amount in the mail. but she assured me it'd be ok, she was going to talk to erin and have her work on this 'today' and they'd get back to me and let me know what was happening.

about an hour later erin calls. she had picked up denise's vmail messages and was returning my initial call. we laughed, i let her know i reached beth and the 2 of them were to talk as she was the one beth said would be figuring out what was up. but if she has any question after that to please call and i'd add what i could.

she called back later in the afternoon with answers. i will *not* have to pay is the result. but let me share with you some of the information i learned.

the letter i received from regence refers specifically to the CAD or "computer aided detection with MRI". now you can not have an MRI without the CAD. just like you don't have a ladder without rungs. what the letter from regence states is that "yes, you can have the ladder and we'll pay for everything but the rungs". doesn't do one much good, does it? you have to have them both or forget about it. as i know just enough about this technology to know that you have to have both, of course i'm thinking denial of entire MRI payment. when you look at the bill the CAD is the same code as the rest, so there's no 'line item break out' for it, either.

essentially what happens is that overlake currently breaks out the CAD and bills seperately for that, even though it's all the same code, etc. what laura at regence told me is truth, as she's looking at the letter and explaining it to me. the fact that she doesn't know it's all part of the same thing is something she may very well not know. so regence paid overlake low on this, and they are going to 'discuss' with them the differential and after all of that's taken care of i'll see an adjusted bill from them [overlake] with a new 'my amount' due. as it turns out it'll be about 25$ less than what it is now.

i had a great chat with erin. her aunt was diagnosed with BC so it's close to her. she also understands to a certain degree how stressful going through these billing issues are for those of us currently under treatment as well as those of us who, while we are 'done' with treatment, we're never really done with 'it'. it's always there. there are still many days when i think back and wonder what-ifs, and elate at how good my fortune with this whole thing is.

she said she really had no idea why regence was sending out these letters. i wasn't the 1st to get one. and no, they didn't see this issue last year. what they can tell is regence has changed a few things and while before they and overlake billing codes etc might have been in sync, now they are not. thus the 'denial of payment' letters. she said overlake may very well have to revise how they bill for these, too. that there is no reason why i should need to pre-approve these MRIs.

she did suggest, JIC, that next year, when the doc sends the scrip over to scheduling, that we call regence and make sure nothing serious has changed. that way when we get the letter we'll know up front it's a mistake, that overlake and regence hasn't worked out their vocabulary, as it were, and i'll call overlake breast imaging billing 1st thing :-).

both erin and beth thought it was a great idea for me to call them and let them know i had planned on contesting the plan of regence which made me feel good, thank you suzi!

it was a huge sigh of relief and i can't tell you how much weight off my shoulders to know this was taken care of. but as erin and i spoke, (along with the few conversations/emails from my insurance friend)  it also became clear that those suits in DC who are fighting over the healthcare reform bill really don't get it. it's not so much healthCARE reform we need, as much as it is health INSURANCE reform.

having gotten started on gathering info JIC i needed to take this all the way through the courts system, i will post it here. there is much we, as americans can do to tell them, and in cases like mine actually show them, what the insurance companies are doing is ridiculous, to put a word to it.

coincidentally, obama was giving a speech about the healthcare reform bill as i was on the phone. i caught just the end of it, but this sentence stood out to me

"This is about what reform would mean for the mother with breast cancer whose insurance company will finally have to pay for her chemotherapy.

And this is about what reform would mean for all those men and women I’ve met over the last few years who’ve been brave enough to share their stories. When we started our push for reform last year, I talked about a young mother in Wisconsin named Laura Klitzka [KLITZ kah]. She has two young children. She thought she had beaten her breast cancer but then later discovered it spread to her bones. She and her husband were working – and had insurance – but their medical bills still landed them in debt. And now she spends time worrying about that debt when all she wants to do is spend time with her children and focus on getting well."

so i found the link and will provide some of the text. all of it can be found here:
http://www.kaiserhealthnews.org/Stories/2010/March/03/Obama-Full-Speech-Insurance-Reform.aspx

here's my grass-roots efforts to do my share of what ever it is i can do, to alert those in places who do have some control over things, aware of what the public actually goes through. - hey, has anyone been watching that new reality show 'undercover boss'? it's the same thing. those in mgmt - in our case suits at insurance companies, congress, etc - have lost touch with reality - people like you and me. something might look great on paper but doesn't work in reality and they haven't a clue to this. they do not realize what's really happening or how certain procedures/laws are actually being carried out or handled.

what can we, the public do? write letters. write everyone you know! those of you in different states will have to know the names/address of your local and DC people. but you'll find out who you need to contact if you use my list as a guideline. and you may have other people you know who can also help.

writing letters might seem 'your parents' generation' but in the words of Mr Schoop (remember him in 1987's summer school?) "a well-written letter can get you riches". ok, not verbatim, it's been years since i've seen that film. but i nailed the gist. the congress, the senate, as far advanced technologically as this country is, political rings still move in the slow circle. don't believe me? obama is the 1st pres. to have kept his blackberry, and use email on a regular basis.

i haven't written my letter yet, but once i do i will post it up here. i hope to have it written within the weekend. you can use it as the main text of yours with the preface "a friend of mine who was..." kind of thing if you like. if you write your own i'd love to read it, but i realize it can be a personal thing and will not hold anything against you if you choose to not share it. you can also copy some of the ideas below if you want.



those people in/and for the state of WA i will mail/email.
1- commissioner of insurance
2- attorney general
3- connie lehman, director of breast imaging at seattle cancer care alliance. she has published articles and given speeches worldwide on the subject. read more about her at
http://www.seattlecca.org/physician-detail.cfm?PhysicianID=196&Story=1
 4- both WA state senators: patty murray & maria cantwell
5- WA state governor: gregoire who is a BC survivor
6- WA state congressmen: jay inslee, rick larsen, brian baird, doc hastings, cathy mcMorris rogers, norm dicks, jim mcDermott, dave reichert, adam smith
(find yours at http://www.contactingthecongress.org/)
 7- pres. obama
 8- head of regence insurance
 9- head of blue cross/shield
 10- do we know specific lobbyists?


11- Seattle Cancer Care Alliance

contact the advocacy person/dept at the following:
1- komen - local and HQ
2- BCRFcure.org: (breast cancer research foundation) my personal charity



3- NBCF (nationalbreastcancer.org)
4- ACS (american cancer society)
5- any other charity of your liking that relates

in writing letters consider the following (from an unknown source i stumbled upon)

1.

Something we should be able to push for, effectively, at the state level is legislation that requires insurers to notify affected* patients of medical policy changes so many days (probably 60 or 90) before it is effective.  

*affected = anyone who has had that procedure already, or been diagnosed with a condition that could lead to that procedure, within the past 24 months.  

 

in my case this wouldn't help for future MRIs, but at least i won't get blindsided by a retro adjustment.  (sadly, insurance cos are limited by the data from docs and hospitals, so some people will be missed, but at least the intent is there and resolution ought to be much faster and less stressful).  can you believe this legislation isn't already nationwide, if at all, in place?

 

2.

in the letter to the CEO of your insurance company  perhaps include a lead-in like "instead of going straight to my governor, senator, etc, I am writing to you". even if it's not the 1st letter you write, this is a good idea. some CEOs are under the influence that you can't tell the people what is changing, you have to sell the people on what's changing. 

of course we the people don't trust ins. companies, and it will take a lot to turn that opinion around. suggest strongly that they start to work with the public and allow us to inform them of how it could impact our lives - for better or worse. of course nothing (not even obama's reform bill) will please everyone all the time, but maybe this is the 1st step in bridging that gap? just a thought, do with it what you will.

 

3. many insurance companies have a corporate goal of eliminating any despotism of health care waste, which is intended to eliminate unnecessary medical care from the system, thereby reducing claim dollars and keeping premium lower. still with me? let's say, for example of argument, the diagnostic breast-dedicated MRI actually is unnecessary, the ins. co. also has a goal to keep me as a member for as long as they can. i.e. keep me alive as long as possible so i can continue to pay them monthly dues. :-)  when they change policy at any level which causes billing issues with providers (in my case overlake breast imaging) or members (people like you and me) they threaten that relationship. 

maybe in a utopian world the following scenario would be implemented and actually work:

the insurance co would first make the decision for the change, 2nd identify current members who may be affected, and 3rd create/provide an outreach program prior to the actual policy change, informing us of the change, why it's being made- quoting the studies, rather than just referring to the suits, and 4th, giving us an opportunity to comment and cite studies as well. in my case specifically the studies cited in the letter are older and not very large, where there are any number of newer and larger studies done that do support getting the breast MRI yearly as a course of treatment.

 

maybe the ins. co. would listen and change the police to benefit the patient, maybe not, but at least we've had a chance to refute/rebut. depending on how patients were allowed/provided a way to respond could allow the ins. co. a chance to see how many people would be affected - as opposed to the odd letter that someone takes the time to write - which is why i do urge everyone who reads this to write the letters and send them. it's all easy and good to intend to do this, but we do need to unite and become 1 voice of many. no solos here, just a full orchestra! (sorry, just saw an opportunity to include my livelihood haha).

 

4.

ins. co. are trying to keep costs down by denying un-needed test/procedures etc. but our member costs - what we pay monthly or by paycheck or however keep going up. i know mine has gone up 50-100$/month every year for the past 4 years. so if the ins. co. is cutting coverage, why aren't my payments going down? there's the rub. the public needs to be shown, not just told, where and how we are saving money. i admit i don't quite get how this will work, but that's what was said. my personal opinion: to cut some costs, if there's no prescription for said test/medicine/procedure/device, then don't cover it. the "affected person" must have visited the correct doctor for correct item. but if there is a legitimate prescription written, the said item must be covered by the insurance company, no questions asked. some may argue that we the people would then just start asking for everything left and right etc, but i ask you this. yes, there will always be that exception to the rule, but seriously, how many people do you know will ask for a surgery, knowing the risks etc, just for the fun of it? if there's really a question or doubt about the item, then by all means follow up on it as a fraudulent claim and deny that person the coverage. it's a case by case basis. most doctors are smart people (yes there are the exceptions, and there will be the odd doc that just gives a patient anything they want) and will talk to and listen to their patient, determine the least costly/invasive form of care 1st and work up, so there will be a trail for fraud control cases to follow and learn they are legit. did that make sense?

 

and finally 5.

maybe medical imaging procedures have hit a high. what a lot of people don't realize is that due to imaging technology, these tests can show the doctors more than we ever thought possible even 5 years ago.

because the tech. has gotten so good so fast, many doctors are eager to do the imaging to learn what's wrong with their patient at the start instead of going through a series of lesser quality testing. maybe that's what ins. co. are seeing. i've learned that an MRI has less exposure to radiation than an X-ray. a CT scan has a whole lot more than an X-ray. but there are some things you can learn from a MRI you can't get from a CT. use of contrast can be used with an MRI but not with a PET and maybe the CT, too (if i understand it correctly). maybe it's certain contrasts. i know i could not get a PET or CT with the gadolinium contrast - what they use for the breast MRI.

something i don't understand, too, is this. maybe 1 breast MRI machine et al costs (this is totally example guys) 100,000$ there's only 1 or 2 in each city - hospitals also have to have the facility space and hire techs etc. but everyone in that city and a certain raidus will be using that machine. it'll get paid for in a few years if they charge 1000$/visit to the patient. yes, updates and replacements happen, but not so frequently that our ins. has to go up or insurance cos. ought to feel the need to start denying the coverage. 

also in my case compared to many of my friends. i have a family history of BC, i was diagnosed early with BC, so it makes sense for me to have the MRI where many of my friends have no history. this doesn't mean that at some point they themselves may be diagnosed (i hope not) but it does mean that their doc is not going to be sending them off to experience it. if they did then my above thoughts about the fraud-control dept would catch it and flag it.

insurance companies plan their policies as a global rule for everyone, and everyone is not the same. we need to stand up to them and remind them, time and time again if needed, that we are indeed all different, and we shouldn't be treated as a number, but as a person.

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i know this post has been very long and wordy. maybe it took you a week to get through it, or you trudged through every word in 1 sitting. either way i'm pleading with you, please write that letter and send it off to your people who fit the positions of my people.

addendum 3/4/10 @ 5pm

and to let you know, i have just read the text of obama's speech about the reform bill. (link was added above.)

if you agree with everything i've said, then write those letters. write them now and send them now. read obama's speech. it ought to sound eerily familiar. i had no idea what he actually said until just now.