Monday Musings: December 27. 2010

We’re almost through another ‘holiday season, and all I really know is that the year may end, but laundry and housework go on forever. So, too the toxic parenting styles. Dealing with my 93-year-old mother this last week has been, uh … challenging. She decided not to participate on Christmas because we ‘stole’ her car out of the garage up at the retirement home. Rather than calling and telling me this, she simply decided to not answer the phone. When I got the manager to check on her, she told him that the phone could ring until hell froze over.

Ma, I’ve got a New York Strip roast in the oven and guests arriving. Take your drama elsewhere.

Actually, we’d been telling her for weeks that the car needed to be smogged and registered before the end of the year. Since she’s not driven it since her ‘accident’ a couple months ago, we took an opportunity to go get it. Shame on us. I’ve tried reasoning with her, that driving is not in the picture anymore. She couldn’t possibly get her walker in and out of the car on the best of the best of days by herself. This is where sheer fantasy meets up with that river called ‘denial’.

So, despite threats of calling RPD to report that I’ve stolen her car, I’m going to register it and then promptly sell it. That money will more than pay a months rent at the retirement home, and the savings on car insurance - which has gone stratospheric since the accident - will be substantial as well.

Whatever your familial holiday dramas, know that we all have them. It’s just something that you survive. Like laundry and housework.

Ooooh, the backyard bird feeding has produced something new! Nut Hatches, which I’ve seen often up in the Sierras, have never graced my acreage until now. A Red-breasted Nut Hatch was out working the suet feeder day before yesterday.

For about the last two months, I’ve been talking to a local breast cancer patient who reached out to me. That in itself was a damn gutsy thing to do. You’d be surprised how many can’t. The sad thing was that she was Stage IV … really serious. After long conversations on the phone, over lunch and by email, it’s become apparent that the cancer community in Reno failed her miserably.

With an oncologist who is a well-known heartless ‘prick’ with a smarmy, less than professional bedside manner and the complete lack of a coordinated effort within the cancer community, it seems that it’s all just been too little too late. I encouraged her to go to another oncology group - which she has, reporting it to be much better - and we even made plans to go to the University of Texas, MD Anderson Cancer Center for a second opinion. The appointment was made, she got donated miles on the airline, and I made reservations at the hotel I stay at as well as a non-revenue reservation for myself on Delta.

She can’t make it. It’s all too much at this point. She fell and really hurt herself, and that could point to a condition far more serious than even MD Anderson can reasonably be expected to offer a ‘good’ or hopeful outcome for.

As I’ve watched the local hospitals unfurl banners and big marketing programs touting better breast cancer programs, at the end of the day, it’s simply not working well beyond the confines of a particular ‘campus’.  No woman should have to engage in a struggle of this magnitude, not to mention alone. I’m fairly certain that I would not have survived my own Stage III breast cancer were it not for the support of my husband and our financial ability to go wherever for the best treatment. I can’t imagine how horrible it would have been were I divorced.

Here’s the problem: Unless a woman can know to pro-actively go to an accredited ‘breast center’ - such as it is in Reno, Nevada - before she’s routinely sent to the surgeon, it’s all just a thought exercise. Women are still going from their OB-GYN or primary physician to the imaging center (which might be an independent, stand alone enterprise), and with a ‘bad’ mammogram, she’s sent to a surgeon here. What do surgeons do? They cut. Call it biopsy - excisional or otherwise - it’s the same.

These women are frightened beyond belief and they want it gone now. Sometimes that is exactly the very worst thing they can do.

Recently, another acquaintance told me that his wife was getting her double mastectomy in a week. Huh? What? Oh, yes … she’d gotten a second opinion. At the hospital in Truckee. Yup. A well-known center of breast cancer excellence. There were so many things ‘wrong’ with what I later heard about the decision making process in this case, that I finally had to just stop listening/stop thinking about it or ‘lose it’ entirely.

I’ve distanced myself from the breast cancer fight here in Reno pretty much because I can’t stand hearing stories like this and not be able to really help. I’m just emotionally exhausted by it. I’ve lost too many women I cared for. This has to be a war waged pro-actively - BEFORE women get the scary mammogram. Women themselves have to be informed about what the right steps are - upon diagnosis - so their fear doesn’t get the better of them and set them on a course that allows no ‘do-overs’. It isn’t just about finding the lump. Making sub-optimal medical decisions after the lump is ‘found’ can be just as tragic as never finding the lump in time!

The medical community has to take some sort of responsibility for its own conduct, too.

Sub-prime doctors are still tolerated and given a pass. As are those who ‘don’t play well with others’, which is a death dealing downside of our vaunted ‘free market’ free-wheeling capitalism when it comes to health and well-being.

I know women are afraid to read article after article about breast cancer, and what to do if they ever get that diagnosis. I know I didn’t want to read that stuff, and didn’t. It would’ve killed me had not educated, informed friends intervened, and we had the means to take bold action. But the alternative can kill them.

I’m always telling cancer patients that they only have one first chance to get it right in so far as their treatment. They didn’t get cancer overnight, and it won’t matter if they take a week or even a month to really understand their disease, get a second or even third opinion ( really out of the area if possible!), and devise a comprehensive treatment plan they can truly understand and believe in - and live with.

I wish I knew how to get that message across better, but I don’t.

-maven

Friday Fish Wrap: October 1, 2010

October is my favorite month, and not just because of my birthday. Uh, there is a wishlist if you’re interested. Really, autumn is awesome for biking and just being. There isn’t a prettier time of year to just enjoy everything nature puts out there.

I love when the Rabbitbrush is in bloom. This was along one of my two standard morning bike rides, and it provided a great view of both wild Nevada and downtown Reno in the distance. The sky is really just that bluebird blue out here. That’s just one reason I wouldn’t live at sea level anymore.

A little further along the ride, there’s a few sheep in a small pasture. I laid the bike down and leaned against the fence to appreciate a border collie as she raced circles around the sheep, nipping hocks, and herding to her hearts delight. Occasionally, she’d stop and bound over to me for a bit of tail wagging, panting approval.

We were both having a grand morning.

Bernard Schwartz didn’t have such a good morning, and neither did any of his legions of fans, which included me. ‘Bernie’ - aka Tony Curtis - passed away at age 85.

I really am starting to feel old in that so many of the iconic film stars of my youth are now gone - Curtis, Jack Lemmon, Marilyn and so many more. We who knew them were greater for it.

You’ll notice over the course of this month that I’m offering up more breast cancer information. This is, after all, Breast Cancer Awareness month. As I do every year, I’ll be posting a wide variety of related information, from prevention to diagnosis, from treatment to survivorship issues- including what I think of Sharron Angle, Nevada’s TeaNut candidate for U.S. Senate. Sharron - who doesn’t support ‘mandates’ to ensure that all women have the option to get a mammogram, regardless of what their insurance company would offer, or not.

Those of you out there who are in one of those stages are encouraged to contribute your ideas and opinions. Feel free to voice your concerns.

One of my concerns: I think we’ll be seeing an upswing in younger new breast cancer cases. I say this in regard to the latest information that has come out about when women should start getting a regular mammogram.

The last media jolt on this subject was about a year ago, when it seemed that researchers had backtracked to a position of age 50 and over. It got a lot of attention - especially from women like me that were diagnosed in their forties. I was 49 at time of diagnosis, and my docs said the cancer had been there for at least two years.

Now, due to a recent Swedish study, they are reversing course to include women under age 50. The thinking goes that although the statistical odds are slimmer below fifty, what do you tell that woman who finds it at age forty-something. Gee, you’re a statistical anomaly, too bad?

But here’s why I think there could be a shift toward a younger population in the years to come: diet and lifestyle.

Woman of my generation (Baby Boomer) and older didn’t have access to the amounts of hidden hormones and other additives in the food supply. We also didn’t spend as many years carrying so much more body fat. Body fat promotes estrogen production. Our food supply (dairy and meat) is laced with it as well. Take a look at the young women out there - and adolescent girls as well. They’re really heavy - with ‘muffin top’ waistlines and enlarged breasts that we would have died for at the same age, back in another generation.

This speaks to too many calories and too much estrogenic activity. It’s a set-up for more and earlier breast cancer.

Stay tuned - as in vigilant.

Talking about Sharron Angle, I’m so weary of those Crossroads GPS ads about how Harry Reid having done everything short of asking every illegal alien in America to come to dinner at his house - and stay in the guest room for a few years while mowing the lawn. Karl Rove has been working overtime on this stuff - which goes far beyond any conceivable definition of ‘spin’. It’s outright lies.

And that’s not just me talking. FactCheck.org has an enlightening article called ‘Crossroads Jam Up’ which covers the reprehensible media blitzes Rove and Crossroads GPS have been levelling at several candidates in close races around the country - including Reid.

A Nevada ad exploits a gaffe by Majority Leader Harry Reid, who said last March that “only 36,000 people lost their jobs today, which is really good.” As he later explained, Reid meant to say that the previous month’s job loss was much less than expected. From FactCheck.org ‘Crossroads Jam Up’

The bottom line here is what damage the Citizens United Supreme Court decision will have been done to our electoral process by allowing unlimited money to funnel through third party Super PACs - of which Crossroads GPS is one - without any oversight or reporting. That’s right. Crossroads GPS is structured so that they do not have to disclose who gave them money or how much was donated. The evil doers can remain anonymous.

Isn’t that a grand thing for a democracy?

I’ve been drying more fruit and the declining tomato crop, and it’s been a real discovery. This dried stuff is the best damn snack/candy since beer in cans. I even took a mixed baggie of dried pears, apples and tomatoes with me to the movie and wow, that was awesome! It’s so fresh and just lightly sweet tasting. Plus it’s far more satisfying than sugary candy and stuff like that - I would guess that the fiber (especially when combined with drinking water) fills you up. Mr. Maven remarked that the dried tomatoes were ‘more’ … rather like a sweet treat than a vegetable taste. He loves them.

Give it a try.

We still get a lot of Natacha’s mail here. Forwarding takes time. But we both have noticed the incredible number of credit card offers that arrive here. None for us. They’re all for Natacha …

Let’s see - we pay off all of our bills every month. Hardly ever get a late charge, or a hold over to another month. Have sterling credit. But it’s very apparent that we are not the customer that the big banks want.

Natacha, on the other hand, isn’t a citizen and has practically no credit history, and they want her bad.

Uh, huh. That’s the free market, invisible hand, at it’s best, isn’t it?

I had a better than usual experience with telephone technical support this afternoon. I’d been having some really novel problems with Adobe Photoshop Elements 8.0 lately - the photo organizer thumbnails would open in really, REALLY intense colors. I did the usual - uninstall/reinstall the program. No help. And the problem was totally intermittant.

Here’s a screenshot ( TIP: always do a ‘snip’ screenshot and save it for when tech support calls back and the problem isn’t happening):

The screenshot above was worth a thousand words with tech support today.

Last Friday I got Adobe support on the line and the Indian guy over in Delhi or Mumbai really seemed to fix it. It’s something about the RGB settings. But it happened again today. Back to Adobe support.

Over the last year plus, I’ve had the enjoyable experience of working with a team of Indian software people and it’s actually helped my interactions with the telephone tech types over there. Today I was able to jolly along with Puneet P. Pahuja (now there’s a monogram!) as he wandered through my computer remotely - regaling him with funny stories about the challenges of developing completely novel software as service apps across two continents, eleven hours difference in time zones and cultural/language differences.

I’ve got to say, he really worked the problem - taking several breaks to research further. He finally really did fix it and left the color management/settings on my computer better than before. We parted with some laughs.

So the next time you get one of them on the line - you might want to remember that they are eleven hours different, which means they are often in the middle of their night. Also, just like your co-workers at the office - they are bored, consumed with the last little family crisis, hungry and cranky, tired, and most of all feeling really anxious over their inability - perceived or otherwise - to speak idiomatically correct American English.

I was teasing Puneet about this, but finally ended up congratulating him on a really exceptionally command of American English despite the ‘English’ English accent. I really could visualize his face lighting up - much like Jateen or Aneesh, a couple of my former co-workers might have.

In this way the internet has made the world smaller and better.

I’m looking forward to a quiet weekend - no out of town company. The weather is finally going to cool down to seasonal norms and that’s good - I have a couple of new sweaters I’m looking forward to wearing.

Sit. I’ll let myself out.

Cheers.

-maven

What have bra makers got against breast cancer survivors?

Leave it to me to talk about mastectomy bras on the front page of my blog. But, I think doing the obvious and ‘hiding’ it on one of the other pages, is part of the problem.

Women like me, minus one or both breasts (no, the promised reconstructive surgery didn’t work out) are expected to go through the rest of their lives, quietly hiding our ‘problem’ in bras that are about as sexy as athletic tube socks. Oh, and you get a choice of ‘nude’ , white or black. Knock yourself out.

Here’s your reward for having survived breast cancer! Lookit! Ain’t it purty?

This catalog photo is as good as it gets - especially here in Reno. I went bra shopping recently at the one place in town that carries mastectomy bras, and I was given one choice - take it or leave it.

This is why I live in mastectomy bras that have seen ‘better’ days. It’s a project that would depress the most well adjusted of us into the bottom of a double martini.

I don’t care much for take it or leave it.

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A short lesson in the beauty of paying it forward

Yesterday, I sat down in the office to catch up with my work email and found one that had an unfamiliar address. Usually I’m pretty cavalier about hitting that delete button, getting rid of the junk, the spam and the ones with viruses.

I’m so glad that I hesitated on this day.

Some months back, I had occasion to mentor a newly diagnosed breast cancer patient back east. I do quite a bit of this, as an M. D. Anderson ‘Network’ volunteer, and as a breast cancer advocate locally and through my blogging.

She and I exchanged some emails, and then we went our ways.

Some women I’ve mentored have become long distance friends, some wanted to go their own way and preserve their privacy. I’ve learned that I have to be ‘okay’ with the latter choice … so I don’t push.

But late at night, sometimes, I wonder …

Here’s what I read yesterday morning ( I’ve camoflaged her town for obvious reasons ):

“Dear Cynthia,

I e mailed you a long time ago about Triple Neg Breast Cancer. Thanks for all your advise. I am now going to start radiation and than my treatments will be over.

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Monday Musings: January 11, 2010

As I write this post on Sunday afternoon, I’m thinking back on a conversation with a wonderful sounding gentleman in one of the midwestern states who emailed me regarding his wife’s newly diagnosed breast cancer. We’ve been emailing back and forth, finally getting the opportunity to speak on the phone today.

If there’s one decent thing I can do in this life, it’s lower the fear level for those who’ve just gotten that horrible news and help get them on track to taking charge. Oddly, I seem to be good at this.

Typically, the medical profession seems to have more than its’ fair share of knotheads. This wouldn’t matter if the bad news was something like you need a new muffler, but a cancer diagnosis shouldn’t carry that risk. In this case, the woman was given the pathology report without having even seen an oncologist, and therefore had no real frame of reference to interpret the ‘bad news’. BTW, the pathologist seemed to go out of his way to phrase things in just such a manner to really scare her.

The good news is that I’ve seen this pathology report and it’s serious but not at all dire. Handled correctly - and that’s the key - her cancer should be ‘cureable’. Not a word I care to use, since there is currently no cure for cancer. It is a chronic disease that we learn to live with - and live quite well, thank you.

But, by getting that all important second opinion, doing our homework and seeking the best -if not always convenient or nice sounding - advice we can live well beyond all expectations.

This lady is blessed with a wonderful husband. She’s going to do well.

On to the flap over nothing.

The Senator Harry Reid flap over nothing.

Could Senator Reid have used different wording? Yes.

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M. D. Anderson Cancer Center: Mammograms should start at 40

Updated on Wednesday, November 18, 2009 at 12:40 by mavenandmeddler

Like a lot of women out there, I was really confused by the headlines about delaying regular mammograms until age 50, and I was somewhat appalled by the suggestion as well. I’d have addressed this sooner, but I’ve been out of town and didn’t have access to my blog.

Had I waited until age 50, I might not be sitting here telling you about it. I was diagnosed at age 49, and according to the experts at the nation’s top cancer research institute and hospital, my cancer had been there at least two years, if not longer. What am I supposed to think about starting mammograms at age 50, and then getting them only every other year?

Call me a cynic, but I think this is somehow being driven by healthcare cost containment and the insurance industry.

Let’s think this through on another level: if there are so many false positives and unnecessary biopsies, let’s take a good look at why there are so many false positives and poorly done biopsies. In other words, don’t kill the messenger!

I’ve seen this happen time after time here in Reno. A substandard mammogram, that led to excisional biopsies that led to unnecessary mastectomies that led to overall poor outcomes. Why aren’t we taking a good hard look at the whole picture here?

At M. D. Anderson, the mammograms (equipment and the well trained technicians and radiologists) are far and away superior, and then any suspicions are followed up with other techniques such as ultrasound and other imaging to confirm those suspicions. They are adept with ultrasound guided Fine Needle Aspiration type biopsies that are quick, minimally invasive and provide excellent characterization of the real existance (or not) of cancer and it’s extent. This is standard of care. This same standard of care doesn’t exist far too many areas of the country.

Is anybody asking why? No.

To simply declare that mammogram screening is unnecessary until age 50 and then only occasionally is a deceptive and potentially deadly way of addressing the wrong problem. This pisses me off.

Here’s what I was waiting to see, however, M. D. Anderson’s official position on mammography screening:

M. D. Anderson Maintains Mammogram Recommendations

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Getting over the toxic culture of 'positive thinking'

I know that I’ve had a gutful of it (she said, sitting there at the keyboard with a freshly made martini. Natacha’s first attempt at making one…and with my gentle guidance, it’s superb).

Maybe you’re one of the few out there harboring some suspicions - but dare not express them openly - that perhaps the deluge of motivation that we’ve been subjected to over the last few decades is just horseshit.

My brilliant and perceptive step-daughter tuned me into the new book by Barbara Ehrenreich - ‘Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America’ - that deconstructs the lie of positive thinking as it has been practiced … no, actually marketed to America in the last 50 years or so.

 

Positive thinking may not be the only reason we’re in the mess we’re in, but it probably did a dandy job at lubing the ‘tool’.  If that’s the ‘picture’ you’re getting, good for you. You get it.

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Friday Fish Wrap: October 9, 2009

I held my breath at o’dark hundred this morning as I read the news flash that Obama had been awarded the Nobel Peace Prize, since I knew it would be only a matter of minutes before the Republican spitting outrage machine would get spooled up to a froth over the honor.

John Bolton, Master of Highest Rightwing Umbrage, is not exactly Obama’s number 1 fan.

Personally, I think the award premature. But, who knows what goes through the mind of the Nobel Committee? They stiffed Ghandi of all people. If this award does two things, it will have been a smart move: 1- Set forth the momentum that Obama needs to be the leader he can be, and say ‘ta-ta’ to the big money of special interests that have infiltrated his circle. 2- Confuse and piss off the Republicans.

Regarding the health insurance debate: Max Baucus’ bill got a slightly more positive nod from the Congressional Budget Office now that the bill has, essentially, been gutted. Well, there you go … it’s cheaper because there’s no engine under the hood. Who would have thought?

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Sen. Harry Reid works for Nevada breast cancer survivors

The following is a statement from Senator Reid’s office, and I can quite honestly say that I know the Senator well enough to say that this isn’t just the ‘same old, same old’ feel good statement. He really does believe this.

 

Here is why we need to keep Senator Reid working for Nevada, and America:

Washington, D.C. – Nevada Senator Harry Reid today made the following statement in recognition of Breast Cancer Awareness Month:

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NBCC viewpoint on health insurance reform

Since this is now Breast Cancer Awareness Month - and I am a seven year survivor of advanced (Stage IIIa) breast cancer - you are going to hear a lot about breast cancer this month, in addition to my usual soapbox appeals for a comprehensive, modern system of affordable, accessible, fair health insurance for all Americans.

To this end, I’d like you to take a look at how the National Breast Cancer Coalition (NBCC) frames this debate and offers their position:

Since its inception in 1991, the National

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Breaking news: Sen. Reid to host Wednesday teleconference with breast cancer patients and survivors

I’m contacting Reid’s office right now, as should you. Senator Reid is hosting a conference call tomorrow - Wednesday, September 30, 1 p.m. PDT - with breast cancer survivors and cancer research advocates to talk about the importance of breast cancer awareness and the urgent need for health insurance reform.

To obtain your call in information, contact :

http://reid.senate.gov/services/townhall.cfm.

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Friday Fish Wrap: 31 October, 2008

Well, it’s Nevada Day - and we’ve always joked that the founders must have had a sense of humor putting it on the same day as Halloween. It’s so perfect in this state - where it’s really hard, some days, to tell what’s real and what isn’t, what’s scary and what isn’t - especially when it comes to politics. The good news, for those of you not living here, is that our legislature only meets bi-annually - which I figure keeps the damage to a manageable amount.

illustration by Judy Pfeifer jp4art@embarqmail.com

We finally got the pre-winter garage clean out done! Gosh, you don’t have to walk over and around ‘stuff’, with a lot going to the dump and Goodwill. This project is close to my husbands’ heart, to the extent that we hear about it for at least two months going in.

“Oh, we’ve gotta get that garage cleaned out. It’s just awful, I can’t find a damn thing out there!”

I finally get with it,  just to hear the end of the thing, although having a clean garage is sort of nice.

  

I got around to doing some long needed deep cleaning in the house, too - taking the screens out of the bedroom windows and cleaning the glass and casements thoroughly. It was also time to take some of the window treatments off for the winter, and allow a bit more light in. I’ll sew some new decorative valances and swags to doll it up a bit this weekend.

This was the week to catch up some phone calls to important people in our lives.

Alan Jagneaux in Sulphur, Louisiana still hasn’t been paid by FEMA for the damage resulting from the more than six inches of water that invaded his house during Hurricane Ike. This is tough for a 70-year-old retired boilermaker on a fixed income who lost his wife (and my dear friend - Helen) to breast cancer two years ago, and then fought colon cancer himself a year later. He’s tough and resiliant, I’ve got to say that. Must be all that gumbo and sauce piquant.

Theresa Dolan lives in Houston, Texas and was the nurse on my floor when I had the awful failed breast reconstruction surgeries. I might not have actually died had it not been for her Irish humor, warmth and compassion - it would have just seemed like it with the 20 hours of surgery spread over nearly 10 days in the Intensive Care unit. Theresa became a good friend and we try to catch up when I’m down at M. D. Anderson Cancer Center for my check ups. She’s so Irish and so funny. Even better, she thinks I’m a total crack up!

Ron and I took some nice bike rides this week, taking advantage of the nice fall weather, and yesterday near Veterans Parkway in South Suburban Reno, saw a Sandhill Crane, a falcon and a band of about eight wild horses.

Then there was Obama’s 30 minute speech last night. We were absolutely inspired. This was unlike anything either of us has heard in decades, harkening back to language, spirit and vision of R.F.K and Martin Luther King. Tears ran down my face during the entire thing. If people don’t elect this man - and then support him in every way possible ( which also means a majority in the Congress ) they only have themselves to blame.

Today, in my yoga class Diane told us she’s been diagnosed with breast cancer. She’s rightly in shock. I was in shock to find out she’s been taking the maximum dosage of HRT ( Hormone Replacement Therapy) and the doctors just thought that was fine. Actually, I’m outraged. As usual, she’s been shuffled to a surgeon ( not a surgical oncologist - there aren’t any in Nevada ) and getting the catch as catch can/ ad hoc care that places like Reno offer. I’ve offered my support as always. I hope she gets the hell out of Dodge.

The merger between Delta and Northwest Airlines in a reality now. That gives us another choice when we’re trying to ride on our pass - which ain’t easy these days with packed and cancelled flights.

There you are. We head into another weekend and I hear it’s going to be rainy, but that will be a good excuse to whomp up some Hungarian Goulash and get a little further in the book I’m reading, “Hot, Flat and Crowded” by Thomas Friedman. Essential reading for those who consider themselves with the program and on top of things.

You have a good weekend, too.

maven