My Great Breast Cancer Adventure

Double Duty Post

Some days (actually, most days) one just doesn't have time to post to the three different blogs that one was crazy enough to create. So I think I'll let today's post be a link to:

my Writing Salon blog post

Change of Pace/Digression from Cancer Posts

 

 

For those of you who know me and think I was born then raised in solitary confinement, here are pics of my sister Jill and her husband Vaughn, working on making a bed that they custom-designed for Vaughn's grown and recently married child (Jill's stepchild). Vaughn is a carpenter, and Jill has always been a craftsperson, very good with her hands. Unlike me, she can do things like sew and refinish antique furniture. She and my mother used to create custom-made dolls that they sold through local shops in Ketchum, Idaho, which is near Haily, Idaho, where Jill and Vaughn now live. (Demi Moore, btw, has a home out there, and she collected these dolls, as did many other people. They were beautifully made. I wish I had photos of them. Jill? Are you reading this? Got any old doll photos?)

More on the Mammography Uproar

Here's the comment I got re: my last post on mammograms:

So...you think mammograms are overly prescribed? Do you think the radiation from them is potentially more dangerous than the small tumors they may uncover? It's really a strange controversy -- my gut feeling is it's all about saving money, which makes the new guidelines very suspicious to me.

I hardly know how to begin to respond to this comment because it is so intensely frustrating for me to see that the person who made it -- a DEAR friend of mine, actually -- obviously has done no reading up on this subject. . . even when I have made pertinent information available via links, right here on this site. I have done research FOR my readers, and even then, very few people take the time or make the effort to read, think and draw conclusions based on more than gut instinct or spoon-feeding by a biased media conglomerate.

My friend (and again, I emphasize that this is a DEAR friend) knows how much time and effort I have put into learning about this subject, and yet I still get this maddeningly "off the top of my head, my uninformed opinion is..." comment! 

I believe that the majority of people in our society do exactly this and, don't get me wrong, I did it too, just as much as anyone else, until my breast cancer diagnosis forced me to REALLY start thinking and reading and researching for myself. I too went by uninformed "opinions" and gut instincts when it came to health issues and medical "information."

But here's what I now know: Opinions and gut instincts are fine places to START with. They are not fine places to END with. 

So, dear friend, I must yell at you for posting this comment. I love you, but for godsake, I can't believe you have paid so little REAL attention to anything I've ever posted (or referred people to) about the pros and cons of mammograms. It would be one thing if you countered with some specific reasons/information/resources that back up your gut instinct and opinion. Then we could have a real discussion. But that's not what is happening here.

When I get over this current rush of frustration, I will probably find and post yet another article that addresses the specifics of this issue. I'll offer it up, yet again, on a silver platter.

But will anyone bother to read it? Or will I just be continuing to talk to deaf ears?

Painted Leaves

Nov. 28th: Photo Blog Update

Ignorance Surrounds the Mammogram Screening Controversy

Here's an excerpt from today's "part II" of Ralph Moss's article about the mammogram screening controvery:

"Professor Samuel Epstein, MD, professor emeritus of Environmental and Occupational Medicine at the University of Illinois School of Public Health, and Chairman of the Cancer Prevention Coalition has tirelessly drawn attention to the radiation risks of screening mammography, has pointed out that sobering fact that over a period of 10 years, a pre-menopausal woman undergoing annual mammograms receives almost half the dose of radiation that was measurable within a mile of the Hiroshima bomb epicenter."

You can read the entire article on his website, Cancer Decisions website. Or you can ignore it and keep listening, instead, to the emotional, inflamed, irrational and irresponsible wave of reactions to the recently revised evidence-based mammogram screening recommendations, which make total sense and are NOT that hard to understand if you just put aside your fear-based indignation long enough to use your brain for a few minutes (or maybe even for an hour, if you really want to do a bit research instead of just relying on the same old misleading pronouncements about the efficacy of mammograms).

Maladies Schmaladies

Let's skip the medical maladies post today, shall we? I've got an appointment with Dr. Thomas Cowan at 11 a.m. If he has anything enlightening to add to my growing list of opinions and recommendations, I'll fill you in on that tomorrow.

But for now, a new photo post must suffice. I am pleased with this one.

No News is Good News (Sort Of)

I haven't been posting my "Lastest Cancer Scare News Updates" every day not because of more bad news but because: a) I've been too busy with living my regular "non-health crisis life" and b) The medical stuff is still all up in the air and probably will remain so for at least the next several weeks.

Examples of responses gathered thus far re: the D&C pathology report:

Doctor #1 (no-nonsense, authoritatitve voice): Of course you'll have to have a hysterectomy. That's a no-brainer. You also want to set up an immediate appointment with Dr. Gynecological Oncologist Surgeon with Stellar Reputation. He is the absolute best by far.

Me: Hello? I would say we are getting a bit ahead of ourselves here, given that there has not yet been a conclusive diagnosis of cancer or of anything else, for that matter. The pathology report gives no definitive answers...just more questions. Why would I instantly leap to the GIGANTIC and life-altering decision to have a hysterectomy, pray tell - especially since no one has yet talked to me for even ONE SECOND about other options, or about what effects a hysterectomy could have on my body and the rest of my life? 

***

Doctor #2: You don't need to rush to a hysterectomy tomorrow or the next day. You've got some wiggle room here. A couple of months to consider other options, have some more tests. I'd recommend that you first have....

HaphazART Squared!

Thirty-two of my abstract photos are featured (along with those of two other featured artists and several other photographers), in the now-available hard-cover edition of Haphazart Magazine Issue #2 (curated and designed by the editors of the Haphazart! group, a popular group on Flickr that showcases "urban abstracts").

The book (they call it a magazine but actually it's a 12x12, full color hardback book) is available through Blurb (print on demand). However, I doubt that any of my friends can afford this fancy coffeetable "collector's edition," (from which no one at all makes any profit - not the artists and not the editors; it is being sold at cost - but it's still expensive) so I've created a less expensive option:

Here's a link to my QOOP store, where you can buy the "bargain hunter's" calendar version of the book (not the whole book, just my photos):

  My QOOP Store

Hyperthermia: Why Isn't it More Widely Available in the United States?

Taken from the most recent Ralph Moss newsletter, Cancer Decisions:

There was another victory for the use of regional deep hyperthermia in the treatment of cancer. The latest victory occurred in the treatment of high-risk bladder cancer [note from Jane: also cervical cancer]. Heat treatment, delivered via the BSD 2000 machine, improved such patients' five-year survival rate from 67 to 80 percent. The local tumor control rate went from 63 to 81 percent. In addition, the disease-specific survival was 88 percent, metastasis-free survival was 89 percent, and the bladder-preserving rate was 96 percent at three years.

My.Third.Eye Photography: Evolving...

Here's my new evolving photography-only website, My.Third.Eye Photography.

It's rudimentary and not at all high tech as photo blogs go, but I like separating my photos out from this blog, which is becoming too cluttered and unfocused (an accurate reflection of my life but not necessarily the best format for easy reading/perusing!).

It's also much more limited in content than what I have on my Flickr site, which is EVERYTHING, and thus quite overwhelming.

The Pathology Report Puzzle, continued from yesterday...

From yesterday:

#1: The phrase "suspicious for" is not the same as "confirms." It is not definitive. It is ambiguous. It means exactly what it sounds like it means — that more information and analysis is required before any final conclusion can be drawn. Cancer has not been ruled out, metastatic or otherwise. Nor has it been conclusively diagnosed.

#2: The phrase "disordered proliferative endometrium" is not uncommon in a D&C pathology report, and could POSSIBLY, in and of itself, explain why I was having the dysfunctional bleeding. In other words, this phrase does not automatically mean "cancer." Even so, 99 percent of conventional gynecologists will recommend a hysterectomy if they see it.

#3: The word "focal" isn't as good as the word "random." In other words, if the phrase had been "random atypical cell infiltration" instead of "focal atypical cell infiltration," that would have been less "cancer'ish."

  And here is the rest:

  *  This line in the report: "disappearance of lesional cells on deeper levels of histologic sections" means that "there were so few lesional cells, the pathologist couldn't do any of the other possible 7-10 tests that might have given more clarification." The fact that there were so few cells is a good thing.

    * We do not understand how or why the pathologist came up with a suspicion of "metastatic" carcinoma (ie. cancer that came from some other primary source, either breast or gastric cancer), because the way the cells are described is not the way that breast cancer cells would look. What the pathologist is really saying, in order to cover her/his ass with sort of a "back-up" statement (to preclude being sued at any point), is probably this: "The cells are not clearly uterine type cells." Beyond that, she simply does not know.

    * This long complicated phrase: "...the EMC also shows focal atypical endometrial glands with hyperchromatic enlarged pleomorphic nuclei and cytoplasm with a somewhat squamoid metaplastic appearance, which show weak to moderate partial positivity for an immunohistochemical study for p53" -- is followed by the line: "The significance of this finding is unclear," which renders the whole string of gobbledygook rather useless, really.

    * The next and final line of the report ends up making the possibility of "early serous carcinoma" seem less dominant than it seemed in the earlier path report, because the pathologist can't seem to figure out if it is serous or  "reactive atypia in metaplastic glands," which would be less scary than serous. The other thing Renneker said was (I'm paraphrasing): "It's puzzling, as if they are saying they see two different cancer processes going on simultaneously. That is called a "collision tumor, ut it is extremely rare and unlikely."

So. That all said, where do I go from here? Good question, dear Reader. The answer is: It's a step-by-step process, each step affecting the direction of the next step.

I will let you know what my steps will be in my next post, because today is another work day for me even though it's Sunday. Hopefully it won't be a TOTAL work day, but definitely a few hours. Juggle juggle juggle.

There are also household considerations such as how to get rid of the fruit fly infestation in the kitchen, due to the fact that our new subletter is a "frugivore" who fills the pantry shelves with gigantic mounds of ripening fruit, many of them tropical. At the moment we are trying small bowls of balsamic vinegar to which we have added a couple of drops of liquid dishwasher detergent. Supposedly the little buggers will drown there.

Also are putting out piles of cardamom, which also, so says our subletter, will act as a repellent. She says she will buy more today, since we barely have any.

There is a whole long list, in order of easiest to most annoyingly complex, of ways to get rid of fruit flies. 

Detective Work: Deciphering the Clues in a Pathology Report

Last night I got into bed at 7 p.m. and was asleep by 7:15 p.m. This comes from both the exhaustion and the exhilaration of dealing with a health crisis while also trying to do everything else that you normally do.

So here is the beginning of an update: On Thursday evening I had my phone consultation with the same doctor who consulted with me after my breast cancer diagnosis four years ago. He was a godsend then, and he is a godsend now. Dr. Mark Renneker. He does with me what no one else will do: engages in an informational, analytical discussion with me (not a lecture TO me or a one-sided talk AT me)  about what is going on. He doesn't take the position that he is the expert with all the answers, speaking to a know-nothing who needs to just keep her mouth shut.

What we did was...

Haphazart! Contemporary Abstracts I Issue 02 I November 2009

I have much to report on the "Does She or Doesn't She? (have uterine cancer)" front, but I have been filling my head with so many pathology report details and interpretations, I can't yet muster another burst of energy that would be required to write it all or even partly down.

Besides, I would rather shift gears and proudly show off the cover of the new Haphazart magazine issue #2, because I got to be one of the three featured artists this time around and am excited about it. I've been a member of Flickr for over two years now and I love it, but seeing some of my photos actually printed in a nicely done, coffee table-style book (it's more of a book than a magazine) is extra special.

If you click on the Haphazart link below, there is more info. on how to buy or view it online for free.

Haphazart! Contemporary Abstracts I Issue 02 I November 2009
Originally uploaded by my.third.eye

On the "What Next?" Front

More coming soon, but I am already getting soooooo behind on basic Writing Salon duties, because I've been dealing with the various repercussions related to my latest inconclusive health developments, which continue to require further investigation, emails, phone calls, googling of stuff, making lists of questions to ask, making appointments, faxing reports here and there, blah blah blah. It's like having a whole extra part-time job (which could easily be full-time if I had nothing else to do).

But four teachers are now waiting for overdue paychecks, two of which were already mailed out but now must be re-sent because they were never received, which means I'll have to issue stop payments first. What a hassle. And one has an address change now -- thus more changes to my online banking setup.

Got the Pathology Report from My D&C

Rather than paraphrase it for you, I'm thinking: Why not just let them read it for themselves? That's what I'm doing, after all — reading it for myself, thinking about it, and beginning the next phase of preparing, prioritizing, analyzing and researching.

Final Microscopic Diagnosis:

1) Endocervix, curettage:

    - Lower uterine segment, with focal atypical cell infiltration suspicious for metastatic carcinoma. See Comment.
    - Benign endocervical glandular mucosa

2) Endometrium, curettage:

    - Focal atypical cell infiltration suspicious for metastatic carcinoma
    - Disordered proliferative endometrium with focal atypical glands. See Comment.

Comment: Both ECC and EMC specimens demonstrate focal atypical cell infiltration of stroma. These atypical cells appear somewhat . . .

Personalized Oncology: ie. Chemosensitivity Testing

Cancer is not a "homogenous" disease. It is "heterogenous." In other words, each person's cancer is unique. Therefore, it makes no sense to treat breast cancer --or any cancer-- with "standardized" treatments. But that is what they do. And that's why I keep taking issue with any and all attempts to put me on a "conveyer belt" and give me "cookie cutter" treatments.

Standardized cancer treatments are bad enough. But to make matters worse, the powers that be are now attempting to make it SOUND as though the tide is turning toward a new paradigm of "personalized oncology." But is it? REALLY?

Case in point: Did anyone say anything to me about preserving the tissue from my D&C in such a way that, if it contains cancer, that tissue could be specially tested for "chemosensitivity?" No. And if they HAD done this kind of preservation, would my health insurance pay for such a test? No.

Here's the intro to Ralph Moss's latest newsletter article on this topic:

On Flu Prevention and the Swine Flu Uproar

My gut instinct has always been to ignore all the hoopla about flu vaccines. I've never had a flu vaccination in my life, and have rarely gotten the flu. However, I would have a hard time articulating and defending my stance on this. So I decided to ask my "alternative" doctor, Dr. Thomas Cowan, the next time I saw him. What would HE say, I wondered, about the current swine flu outroar?

But then, this morning, I remembered that I recently received Dr. Cowan's latest email newsletter, and I vaguely recalled that he'd written something about flu season, which I skipped over because some other article he'd written caught my eye first.

So I went back and read it a few minutes ago. Interesting! Now I have some solid reasons in addition to gut instinct for my anti-flu vaccine stance.

Here's his article:  fourfoldhealing.com

Pathology Reports, Do-It-Yourself, & My "Fancier" Bookstore!

I'm giving myself 13 minutes to do this post, then it's off to the vet with Olivia and Jack.

I'd first like to pat myself on the back for doing something on my own instead of just whining. Remember how I was annoyed that I couldn't get an appointment with the surgeon until Nov. 17th to discuss the results of my D&C as well as the pathology report? That's one day short of two weeks of waiting. I could see this, perhaps, if there wasn't this cancer threat hanging around the edges of everything. But given how nervewracking it has been for so many weeks of wondering and worrying (nay, months!), one would think that they might be able to speed it up a bit. 

Anyway, it occurred to me yesterday that...

Inner Sanctum

Originally uploaded by my.third.eye

My Answer to the Question: "How Did Your D&C Go?"

It went very smoothly and I was pleasantly surprised by how un-traumatic it was. The pre-op stuff I had to do, combined with my own anxiety, was more stressful than the actual surgery.

Despite my general wariness of and aversion to hospitals and many of the "mainstream" docs I encountered in the last four years, I must say that I was treated beautifully at CPMC, by every single person I had any contact with at the hospital, which was quite a few. I even had a lovely and interesting conversation with the anesthesiologist about his view of the term "twilight sedation."