Friday, October 22, 2010

Marking the Day

A birthday. A milestone of time? Yeah, but what else? Hash marks on calendars? Crow’s feet on the face? A skirmish with the forces of gravity? In its sum, what does celebrating “a birthday” mean?

A compelled moment to take stock? Hmm…new year celebrations and anniversaries allow (if not insist) for that.

A reminder to be appreciative for last year and look forward to the next? Too Hallmark-ish.

A time for tolerated narcissism? A time to be personally recognized for our basic essence…that is, being US…ME? Maybe.

Why do we want, no need, to have the anniversary of our birth actually mean something? Is it because we are a narcissistic species who like to believe ourselves capable of appreciation, reflection, optimism and therefore recognition? Probably getting closer to the truth.

From where I sit, I think it may simply mean that, today on the marking of my birth, I have the scoring advantage. . . .

“Visitor (Reaper) -0- / Home (Me) -49-“ 

For today, that’s enough.

Tuesday, October 19, 2010

Artemis' Stealth


. . .is not to be underestimated. Her strikes are random. Unexpected. Her aim is impeccable. Depending on her ire, it can be a barrage of excruciating proportions. Or, there are times that her presence is just a whisper, that teases like an ill-intended promise. A promise served hot and always with debilitating resolve.

Thursday, October 7, 2010

Artemis' Silent Assault

The arrow pierced through my chest wall unnoticed. A minor twinge that only slightly drew my attention away from the tasks at-hand. What literally dropped me to my knees was the unceremonious way in which the arrow, on its own volition, began to withdraw.

The head of the arrow must have been either larger than it initially appeared, jagged in its property, or dipped in some form of venom. Whatever the case, the pulsating burning throbs that gripped me just over my left pectoral muscle lit the entire area on fire. I tried to breathe deeply and send soothing energy to the area. To no avail. Each time I caught one deep cleansing breath the arrow tried to dislodge itself again – sending a barrage of concentrated fiery spasms.

I focused on the determination of the arrow, trying to discern its pace and pattern. I was trying to intellectualize the battle raging in my chest. As the spasms finally became less frequent and subside in intensity, I was able to unbutton the top of my blouse – curious to see if I could find the exit wound left by this unexpected assault and retreat. A prominent, raised vein was twitching across the upper pectoral, across the roundness of the breast, and was at least five inches in length.

I considered it for awhile. Reset the tempo of my breathing. Noted that the garage need a sweeping out from the prior days’ storms. Remembered, and then rescued dinner.

I did wonder, however, what I had done to piss-off Artemis?  

Wednesday, October 6, 2010

Nurse Tracy Calling

Four Winds Oncology, can you hold?

Of course

May I help you?

May I speak with one of Dr. Obenchain’s nurses?

I’m Nurse Tracy, I can help you.

Oh hi Tracy. I don’t believe we have met before. This is “TC” I got a letter from SMIL stating they it was imperative they do additional studies, to supplement my breast MRI last Tuesday. I have called them. They want to do a mammogram on my right breast and an ultrasound on my left. They will need the doctor to fax over orders. But, I have a couple of questions that I need answered before we proceed.

Of course. Tell me what they are and I will talk to doctor and get back with you, and I will talk to her about the orders.

Thank you, my questions…concerns, rather are (1) since the MRI is a more comprehensive diagnostic exam than either an ultrasound or mammogram – even a diagnostic mammo, why do we need to do either? SMIL said that the MRI images were perfect in clarity; and (2) what is SMIL seeing on the MRI that makes them (a) want to do additional exams, and (b) what less comprehensive exams tell us that the MRI can’t?

I can’t answer those questions, I will have to request the report, have doctor review it and call you back.

Yes, I realize that, thank you. I would appreciate you following up with the doctor, thank you.

4 hours later….

Ms. TC, this is Nurse Tracy calling from Dr. Obenchain’s office. I have your answers. SMIL says that they do not have a current mammo on your right breast and want it for their records, so that is the reason for that follow up exam. Regarding the ultrasound, because the scar tissue from the sentinel node biopsy is greater in size than your last PetScan they want to make sure of what is there. That is the reason for the ultrasound request. The doctor said that's fine, and I am preparing the orders to fax over to the lab now.

Oh. What about my initial question?

What was that?

My question of necessity. Since the MRI is a more comprehensive diagnostic exam than either an ultrasound or mammogram– even a diagnostic mammo, why do we need to do either?

Oh, as I said, because SMIL says that they do not have a current mammo on your right breast and need it for their records. And, because the scar tissue from the sentinel node biopsy is greater in size than your last PetScan they want to make sure of what is there.

Right, I understand what you are relaying as SMIL’s reasons, but isn’t it true that the MRI, that was just conducted 6 days ago, is a more comprehensive diagnostic exam than either an ultrasound or mammogram– even a diagnostic mammo. And as such, that it should give both SMIL and Dr. Obenchain the information they need to determine what is going on with the scar tissue as well as the status of the right breast?

Ms. TC, you haven’t had a diagnostic mammogram on the right breast in over a year. With your history, you need to have a diagnostic mammogram at least annually.

Tracy, I don't think I agree. I am not so sure that is necessary, in light of my history. The mammograms are not as effective as detecting ILC as an MRI.  My individual history includes the sequence of diagnostic events, in order of certainty, as: (a) diagnostic mammogram; (b) ultrasound; (c) biopsy; and (d) MRI. Knowing all this, I raise the question - isnt doing a mammogram now going backward, diagnostically speaking? And, therefore unnecessarily exposing me to radiation?

Ms. TC, radiation exposure to mammograms is minimal. You got significantly more radiation exposure with the MRI.

Um…Tracy. I don’t believe that is completely accurate. My understanding is that an MRI does not involve exposure to ionizing radiation. Doesn't an MRI use magnetic fields and radio frequency pulses – not radiation. Mammograms, on the other hand, do indeed use ionizing radiation – I know the radiation levels are not astronomical but it is certainly higher than an MRI. Besides, aren’t there more risks of false positives with mammograms than MRIs?

(Pause...heavy sigh...) Ms. TC, it is your choice as the patient, if you do not want to have the mammogram that is just fine. I will note that you are declining the mammogram here in the file. Is there anything else, otherwise I do need to attend to other patients.

What about the necessity of the ultrasound? My understanding is that the MRI would be more conclusive in determining what is going on with the scar tissue than an ultrasound.

Again, Ms. TC, it is your choice if you do these exams or not. Doctor has signed the orders. Just let our office know what you decide. Have a good day.

I hung up and immediately started writing. Since the beginning of this journey I have always kept a journal when meeting with or talking to any and all medical professionals. There is too much information and bias that is thrown out there, and taking notes is the only way I can properly process and distill everything in my own time and context. With the second conversation, four hours later, I was keeping copious notes. I wanted to confirm for myself whether or not my questions had indeed been answered - or not. It is entirely possible that I am suffering some residual effects from last week’s concussion and was just not "hearing" Nurse Tracy. Though, I am fairly certain - upon review, that the substance of my questions were never addressed.

Thank you, Nurse Tracy, you have a good day too!

Monday, October 4, 2010

Monday's Random Thought...Thank you D.C.

****** "Does cancer enter us or do we, falling ill, enter the revelation of the universal cancer?" - Guido Ceronetti, Silence of the Body.

Black Hole Sucking Light...

Sunday, October 3, 2010

The letter

October 1, 2010

Dear TC:

Re: Your breast imaging exam done on September 28, 2010 - Report sent to Robin L Obenchain, M.D.

We have reviewed your recent breast exam (yeah...three days ago, what took you so long? ah...but I wax facetious) and find that we need additional imaging to complete the examination. While the majority of such additional images show nothing of concern, (that's what they said before last year's I wax cynical) it is imperative that they be taken to fully complete your study. Please call our office at ....or your own physician to schedule the needed additional imaging as quickly as possible.

....blah, blah, blah...

We are sorry for this inconvenience, and hope you understand that we need the additional imaging to accurately evaluate our findings and complete your study.

Scottsdale Medical Imaging
Why do I have this repetitive Beach Boys lyric running through my head each time I read the stupid letter:

And she'll have fun fun fun now that daddy took her T-bird awaaaayyy!
As my 18 year old constantly reminds me, even from 2500 miles away...I am SO weird! but I'll have fun, fun, fun........................

Saturday, October 2, 2010

“Living involves being exposed to pain every second—not necessarily as an insistent reality, but always as a possibility,”


Pain is often referred to in philosophical discussions concerning the fundamental nature of human experience. The meanings and consequences of pain, and/or suffering, have been a topic of writing by philosophers and theologians alike. The experience of pain is, due to its seeming universality, a very good portal through which to view various diverse aspects of human life. (Wikipedia)
“Living involves being exposed to pain every second—not necessarily as an insistent reality, but always as a possibility,” writes Arne Vetlesen in A Philosophy of Pain, a thought-provoking look at an inevitable and essential aspect of the human condition. Here, Vetlesen addresses pain in many forms, including the pain inflicted during torture; the pain suffered in disease; the pain accompanying anxiety, grief, and depression; and the pain brought by violence. He examines the dual nature of pain: how we attempt to avoid it as much as possible in our daily lives, and yet conversely, we obtain a thrill from seeking it. Vetlesen’s analysis of pain is revealing, plumbing the very center of many of our most intense and complicated emotions. (Review - University of Chicago Press)

Pain is a noun (person, place or thing). Pain lurks in the shadows, but never quite leaves me. It has become an insidious, but loyal companion for the last year. Pain was first associated with the post-surgical discomfort from the mastectomy. As my body healed from the surgery I was subsequently assaulted with a different, and more persistent Pain, associated with the four rounds of reconstruction surgeries and procedures. Since I have more or less accepted the ladies “as is,” Pain has taken on a different manifestation.

Pain is with me daily now, but not continuous. Pain now appears to have taken up residence within my chest wall. The width of my chest is just 10 inches. Despite these close quarters, Pain is still a selfish lover. Pain strokes me hungrily underneath the implants –which are shoved below the pectoral muscles. It demands my attention by piercing through my sternum. At times it startles me. Taking me by surprise in a shooting moment. Other times, it snuggles up to me for the day, a dull reminder that my body has gone through a metamorphosis, and as a result must embrace a new paramour. And, like any passionate paramour, Pain at times seems to envelope my whole self, leaving me spent, trying to catch my breath.

Friday, October 1, 2010


Individually we do not choose to develop cancer. (Arguably carcinogens and cancer cells are within and without us. Since, as a species we suck at the "holistic sustainability" thing it would appear that the carcinogens are outnumbering us. But I digress....) Again, individually, we do not choose cancer. Those of us may smoke too much (of any/many substances). Those of us may drink hard and too much. Those of us may be addicted to processed food. On and on...etc, etc. etc. But at no time as we indulge in these human frailties do we say: HEY…CANCER, let’s do it!

Okay. So, then we do develop cancer. Whether it be breast – ductal, lobular, invasive, non-invasive, HER+, HER-, BRCA1 or BRCA2…blah…blah…blah; prostate; lung; pancreatic; colon. You get the picture. So, there we are. Now what?

The NOW WHAT is when our choices become more poignant. The NOW WHAT is when our choices become more individualized then we could ever anticipate. And, the NOW WHAT is when our choices have an unimaginable impact on those who know and love us (and probably those who don’t like us so much either certain opposing counsel, you know who I am talking about!).

Are there wrong choices?

Are there smart choices?

Are there self-destructive choices?

Are there plain old stupid, idiotic choices?

Probably. Maybe. Certainly. Human. . .right?

The only thing I know with absolute resolve and certainty is that there are only individual choices. Colored within the context of our own psyche and circumstances.

Do our choices show who we are?
Of course.
Should I judge or be judged by my choices?
Get a life!
Am I different than everyone else.
Of course.
Are my choices right for you?
Only YOUR choices are right for you. If our choices happen to overlap, then maybe we are kindred spirits. (I met a kindred spirit recently who had a tremendous impact on me. A kindred spirit is quite a fabulous find.)

But if our choices repel against each other, my only choice is to respect and champion you and your decisions.  Ah, if only human nature could be as accommodating, regardless of the context...but that is fodder for another blog.

Disclaimer:  On my way back from the 1.5 hour breast MRI on Tuesday I was rear-ended, in rush-hour traffic, on the highway by a car going approximately 30 mph. I was dead still (NO pun intended) stopped for the traffic in front of me. For the science majors our there, the velocity and impact of a stationery vehicle with one going moderate speed is substantial. Among other things, I appear to be functioning (debatable) with a concussion. If the above musings do not make sense, you can choose to attribute it to the concussion - or - I may just be too damn esoteric. I choose the latter.

Wednesday, September 29, 2010

Hey...I Benefited from the Health Care Bill !

Over the last few weeks, I had been bantering with my Preferred PPO Health Care Plan about payment for my upcoming Breast MRI. I had been told that in order for the PPO to pay, they needed a current inconclusive mammogram. (I won't rehash the idiocy of the logic, in light of my present diagnosis and determinative tests that were needed to confirm same a year ago. For those gory details, refer to blog entry dated September 23, 2010.)

As we parried and thrusted on the issue of coverage, the Health Care Reform Bill took effect. Voila! This past Monday I was on the phone again for round four with the insurance company (the MRI was scheduled for the next day). Before I could get my vocal chords warmed up I was met with: "Ms. TC, we were just going to call you. We have looked into this matter and of course since it is medically/diagnostically necessary in light of your condition we will most certainly be covering the MRI. We are insurance administrators, it is not for us to determine what is medically necessary for you. If your oncologist has determined that the MRI is a medical necessity, then all she needs to do is put in the correct diagnostic code and it will be covered. Our apologies if there has been any confusion on this issue. Again, medical necessity is determined by your physician, not us."

WOW!!!! No kidding, no sarcasm...the above narrative is as true a retelling I can provide without a court reporter!  The only "change" or intervention that had occurred between my September 20 conversations with Blue Cross/Blue Shield and my September 27 conversation was the implementation of the Health Care Reform Bill. Yes, I had been doing my best B.O.W.* impersonation. I do not flatter myself with having been the cause of their change of heart (or profit ledger).

So there you go. Now if only they would have taken the blasted test for me it would have been a truly wonderful thing!

* B.O.W. = bitch on wheels

Saturday, September 25, 2010

Her Friend...

Dear "Her Friend." Please forgive me for my impulsive presumption to share your expressions on my blog. They are so honest. One of the more honest things I have heard or read from an involved spectator. So much so that I felt compelled to memorialize them as part of my personal (public) journal. Your honesty empowers me. Thank you!

Her Friend...we just found out yesterday that it is HER2 invasive ductal carcinoma. I say "we" because she is such a huge part of my heart and life that I really feel like this is happening to both of us. I'm angry about so many things.

I'm angry that she has to go through the worst part, when it should be me. She, like you, has always been the healthy, vegetarian, non-smoker, nature lover, etc. while I always do everything "wrong". I only quit smoking a year ago (except during the breeding years) when I was forced to in order to donate. For years and years she has been nagging me about all the things that are bad for me.

I'm angry that I can't be there with her for every doctor appointment and treatment, etc. because she now lives 2 hrs away and I have to work a job I hate for a man I hate even more.

I'm angry this disease is threatening to take my best friend away from me and there is no other person in the world who knows me like she does.

I'm angry about things I can't even articulate. I'm just angry.

And then I feel guilty because it feels so selfish to be angry. After all, it's not my body, it's her body. It's not my life being threatened, it's her life.

And now I feel guilty for ranting to you, when you are having to live with this fight every day.

This sucks!


TC...Cancer sucks chica -- for everyone. Be angry. Be confused. But do not indulge in guilt. Feel. Face and embrace all those emotions and own them. Have a glass of wine. Have a smoke, if you need. Then get off your arse, get empowered, and let your BFF know that you are there in any way she may need -- which may include giving her some distance.

I truly believe that cancer sucks more for those whom we love that are the spectators. I found a bizarre...surreal, actually, clarity in being forced to confront my immortality. It is stifling and liberating at the same time. Help each other find that clarity.

Thursday, September 23, 2010

The Dichotomy of the Cancer Industry...the ongoing saga..................?

Dichotomy – splitting into two polarized groups; opposed by contradiction; differentiated between practice & theory

It is that time for me to get the full work up and see where I have been. The breast MRI. It gives the ONC a hindsight snapshot, allowing her to peer into what my boobies have been up to this past year.

The breast MRI is the annual gig. The PetScan is done bi-annually to see if those bugger cancer cells have decided to nest anywhere else in my ample frame (I am 5'1" ...almost; and 103 ...on a good day).

Here's the issue. I am being told (and by no means am I willing to take this as the definitive last word) is that my private PPO health care plan will most likely not pick up the tab on the MRI unless a mammogram demonstrates its indicated. That in itself would not be unreasonable ...except... (and yes, here it comes) IT HAS BEEN AND STILL IS MEDICALLY RECOGNIZED THAT MY CANCER (ILC) CANNOT BE DIAGNOSED WITH A MAMMOGRAM!

To add insult to the idiocy, a mammogram would unnecessarily expose me to radiation (and radiation is bad). The form pushers at the PPO, however, are saying that they need the "inconclusive" mammogram (again) prior to authorizing the MRI (note, this thinking does not take into consideration what I, as the patient, needs). The inanity (I am so liking the "i" words today) is that the MRI facility says that this is not uncommon (the paper pusher garbage that is) and they typically schedule the mammogram 1/2 hour before the MRI and then there is no delay, both are paid for, and I can be on my merry way...having been exposed to an unwarranted dose of radiation (that may ultimately result in...?) and costing the insurance company more $$$...all so the proverbial boxes can be checked.

If I cannot win this current pissing match regarding my OWN health care? Well, it appears that by insisting on doing what is medically required, and no more --- i.e., outside the parameters of protocol, the price tag for my independence would be $1800.00 out of pocket.

Wednesday, September 22, 2010

Random Thoughts from the Heart

You know I can't let you slide through my hands

Wild horses couldn't drag me away
Wild, wild horses, couldn't drag me away

I watched you suffer a dull aching pain
Now you've decided to show me the same
But no sweet, vain exits or offstage lines
Could make me feel bitter or treat you unkind

Wild horses couldn't drag me away
Wild, wild horses, couldn't drag me away

I know I dreamed you a sin and a lie
I have my freedom, but I don't have much time
Faith has been broken, tears must be cried
Let's do some living after love dies

Rolling Stones

Tuesday, September 21, 2010

Kindly...STOP Waving the Pink Ribbon in My Face!


Dichotomy – splitting into two polarized groups; opposed by contradiction; differentiated between practice & theory

As I was pulling into the home driveway yesterday evening I got a call on my personal cell displaying an unfamiliar phone number. It had already been a confusing day. I had just arrived 10 hours prior from an emotionally charged 5-days in New England, and had spent the day dealing with myriad of “high octane” feelings. I thought when you “left your heart” in a distant geographical location the sensation would be that of a gaping hole in your chest wall. For me, since Sunday and my departure from N.E., my chest wall is exploding! I can’t catch my breath. Indeed, I almost feel like if I were able to I would erupt on the exhale.
But I digress. Back to the unexpected call and the unwitting caller...

A very chipper voice on the line greets me with “Hi Tamera! This is Janice. Janice? I am so excited to share with you that we will be shortly getting in our Pink-Ribbon Breast Cancer Survivor Bracelets and we are taking pre-orders. I didn’t want you to miss out!” Well OMG my arse! “Janice, darling (I have a BFF who uses “darling” to refer to nearly everyone. As a slang-word junkie I thought I would try it out myself in discreet situations – like when it would not be appropriate to verbally rip someone a new one). . .Janice. as a SURVIVOR let me tell you that although I so appreciate your thoughtfulness, not to mention your exuberance, I would not order, pre-order, purchase, gracefully accept, adorn myself or even consider giving as a gift to my nemesis a ghastly pink-ribbon doo-dad. If I wanted to broadcast my status, I would sew a yellow star to my clothes; embroider a scarlet C on my chest; or indulge in word-vomit all over a self-published blog. Obviously I have chosen the latter. Thank you very much." Janice came up with at least 17 different ways to sputter out an apology. Poor darling – I probably was a tad harsh.

For those of you who have traversed my path through the maze that is breast cancer, you may recall my vehement disdain for the Pink Ribbon Industry that has capitalized on raising awareness (like who has not heard of it) of breast cancer by merchandising, packaging, and marketing breast cancer as PINK & FLUFFY!!!!!!

It is not.

Realistic adjectives for breast cancer are: slice, dice, slash, burn, disfiguring, painful . . . in short not a heck of a lot of fun.

So, as the retail market enters their nauseating month of pink satiny ribbons, fluffy pink beanie babies, shiny bracelets and sport hats & Ts that color Breast Cancer Awareness Month, please remember “THINK BEFORE YOUR PINK” and check out

Wednesday, September 8, 2010

Something to Ponder ... and to Take Action About

The following was forwarded to me by an informed & educated individual. My visceral reaction was: environmentally induced early puberty could very like result in development of breast cancer...and in our younger daughters !!!!! ???????? What the hell is our species thinking??? or not thinking about ????

A new study shows that early puberty in girls is on the rise. Our children deserve better!

Tell your members of Congress to co-sponsor an update to the Toxic Substances Control Act (TSCA)!

Take Action -

I had to do a double take last month when I read an article about new research in the Journal of Pediatrics showing that more than one in ten girls are starting to develop breasts by age seven, with even higher rates in some communities. [1]

Seven year old girls should be able to focus on playing with friends and learning to read, not having to deal with the complex physical and mental effects of puberty.

Tell Congress to protect the healthy childhoods of America's children by co-sponsoring an update to the Toxic Substances Control Act (TSCA)

What does updating the Toxic Substances Control Act (TSCA) have to do with preventing early onset of puberty?

One of the many contributing factors to the rise in early puberty is that young children are exposed to dozens of potentially toxic chemicals on a daily basis. In fact, endocrine disruptors, which are chemicals that mimic and interfere with hormones, show up in a wide variety of everyday items including: household cleaners, air fresheners, cosmetics, canned foods, and school supplies. These endocrine disruptors can cause the early onset of puberty. [2]

Updating the Toxic Substances Control Act (TSCA) is crucial to the health of our kids because, currently TSCA lacks a requirement that chemicals be tested to assess their ability to disrupt hormones. This means that many of the chemicals we encounter every day have never been tested for safety. In fact, since the passage of TSCA in 1976, the EPA has required testing of less than 1 percent of the chemicals in commerce!
The TSCA update would require chemical manufacturers to provide basic health and safety information for all chemicals as a condition for staying in or entering the marketplace. It would also, for the first time, make that information public. [3]

It's time for us to take action and support updating TSCA. Our daughters deserve better! The physical and mental ramifications of early puberty are substantial. Girls who begin puberty at an early age are more likely to experience low self esteem, poor body image, and depression. Physical side effects include an increased risk for breast cancer, endometrial cancer, and elevated blood pressure.

This September, our children need more than just new school supplies:
They need new toxics legislation to protect their growing bodies.

Tell your members of Congress to co-sponsor an update to the Toxic Substances Control Act (TSCA)!

Early puberty is just one of the many frightening health effects which can be caused by exposure to toxic chemicals. Our broken chemical screening system also puts our families at risk for cancer, learning disabilities, infertility, and more.

We can't protect our kids and families from toxics without updating legislation like the Toxic Substances Control Act (TSCA).

Please forward this email message on to your friends and families so they can take action too.

Here's that action link again so you have it handy:

Together we are a powerful force for families,

Kristin, Claire, Joan, Anita, Mary, and the whole MomsRising Team

[1] "Some girls' puberty age still falling, study
[2] "Pubertal Assessment Method and Baseline Characteristics in a Mixed Longitudinal Study of
[3] "Recent Findings on Early Puberty in Girls Highlight Urgent Need for New Chemicals Policy":

Like what we're doing? Donate: We're a bootstrap, low overhead, mom run organization. Your donations make the work of possible--and we deeply appreciate your support. Every little bit counts.

On Facebook? Become a Fan. Follow us on Twitter.

Tuesday, August 24, 2010

A Case of Mental Courange...(Reprint of NY OpEd)

August 23, 2010
A Case of Mental Courage

In 1811, the popular novelist Fanny Burney learned she had breast cancer and underwent a mastectomy without anesthesia. She lay down on an old mattress, and a piece of thin linen was placed over her face, allowing her to make out the movements of the surgeons above her.

“I felt the instrument — describing a curve — cutting against the grain, if I may so say, while the flesh resisted in a manner so forcible as to oppose & tire the hand of the operator who was forced to change from the right to the left,” she wrote later.

“I began a scream that lasted intermittingly during the whole time of the incision — & I almost marvel that it rings not in my ears still.” The surgeon removed most of the breast but then had to go in a few more times to complete the work: “I then felt the Knife rackling against the breast bone — scraping it! This performed while I yet remained in utterly speechless torture.”

The operation was ghastly, but Burney’s real heroism came later. She could have simply put the horror behind her, but instead she resolved to write down everything that had happened. This proved horrifically painful. “Not for days, not for weeks, but for months I could not speak of this terrible business without nearly again going through it!” Six months after the operation she finally began to write her account.

It took her three months to put down a few thousand words. She suffered headaches as she picked up her pen and began remembering. “I dare not revise, nor read, the recollection is still so painful,” she confessed. But she did complete it. She seems to have regarded the exercise as a sort of mental boot camp — an arduous but necessary ordeal if she hoped to be a person of character and courage.

Burney’s struggle reminds one that character is not only moral, it is also mental. Heroism exists not only on the battlefield or in public but also inside the head, in the ability to face unpleasant thoughts.

She lived at a time when people were more conscious of the fallen nature of men and women. People were held to be inherently sinful, and to be a decent person one had to struggle against one’s weakness.

In the mental sphere, this meant conquering mental laziness with arduous and sometimes numbingly boring lessons. It meant conquering frivolity by sitting through earnest sermons and speeches. It meant conquering self- approval by staring straight at what was painful.

This emphasis on mental character lasted for a time, but it has abated. There’s less talk of sin and frailty these days. Capitalism has also undermined this ethos. In the media competition for eyeballs, everyone is rewarded for producing enjoyable and affirming content. Output is measured by ratings and page views, so much of the media, and even the academy, is more geared toward pleasuring consumers, not putting them on some arduous character-building regime.

In this atmosphere, we’re all less conscious of our severe mental shortcomings and less inclined to be skeptical of our own opinions. Occasionally you surf around the Web and find someone who takes mental limitations seriously. For example, Charlie Munger of Berkshire Hathaway once gave a speech called “The Psychology of Human Misjudgment.” He and others list our natural weaknesses: We have confirmation bias; we pick out evidence that supports our views. We are cognitive misers; we try to think as little as possible. We are herd thinkers and conform our perceptions to fit in with the group.

But, in general, the culture places less emphasis on the need to struggle against one’s own mental feebleness. Today’s culture is better in most ways, but in this way it is worse.

The ensuing mental flabbiness is most evident in politics. Many conservatives declare that Barack Obama is a Muslim because it feels so good to say so. Many liberals would never ask themselves why they were so wrong about the surge in Iraq while George Bush was so right. The question is too uncomfortable.

There’s a seller’s market in ideologies that gives people a chance to feel victimized. There’s a rigidity to political debate. Issues like tax cuts and the size of government, which should be shaped by circumstances (often it’s good to cut taxes; sometimes it’s necessary to raise them), are now treated as inflexible tests of tribal purity.

To use a fancy word, there’s a metacognition deficit. Very few in public life habitually step back and think about the weakness in their own thinking and what they should do to compensate. A few people I interview do this regularly (in fact, Larry Summers is one). But it is rare. The rigors of combat discourage it.

Of the problems that afflict the country, this is the underlying one.

Thank you Diane ! My physiological reaction to reading this piece - in its entirety, is very interesting on many levels. I cringed. I felt ill (weakened and woozy; my ears started ringing; my heart rate increased dramatically). This definitely hit a chord...or should I say...bone.xxoo

Friday, August 6, 2010

The Pink Elephant


Living with a chronic it cancer, leukemia, diabetes, like living with the proverbial "Pink Elephant" in the room. Everyone knows it is there. Everyone sees and feels its oppressive, offensive, and uninvited presence. Yet, no one wants to call it by name. Everyone steps gingerly around its massive bulk. All those in close proximity hold their respective noses when they get too close. When it eventually takes the dreaded, but anticipated, crap on the carpet, the response is to tie a putrid pink little ribbon around it to make everyone aware that it there.

Thursday, July 22, 2010

UPDATE on methyl iodide approval in California

Don't Eat the Strawberries!

Methyl iodide is so toxic that chemists use it to induce cancer cell growth in labs. Yet California state regulators are about to approve the use of methyl iodide as a pesticide on strawberry fields and other crops. The verdict on methyl iodide will have national consequences. While it is currently legal in 47 states, the U.S. Environmental Protection Agency has said that they will consider banning this toxic pesticide--depending on what California does about it.

Reprinted from -


****** FDA Advisory Panel Recommends End to Avastin for Advanced Breast Cancer

Avastin for breast cancer – no evidence of improved overall survival, no improvement in quality of life, serious side effects, all at $50k a year. We didn't think this was an improvement for women needing treatment for breast cancer, and as of yesterday, neither does the FDA’s Advisory Committee. Although we’re in agreement with the committee’s recommendation, we’re saddened that after all this time there is still nothing helpful to offer patients when current treatments have failed. We hope the pharma industry takes this message to heart and can find treatments that truly make a difference for all in need.

Check out the full story at

Wednesday, July 14, 2010

Random Thinking . . .


"Breast cancer is not pink, fluffy, or pretty."

Check out Breast Cancer Action's Breast Cancer Sucks campaign at

Tuesday, July 13, 2010

Random Thinking . . .

Dying is easy!

Its LIVING well (with and despite all the #%^&) that is the true challenge!

Thursday, July 8, 2010

Happy Anniversary Baby!


Truckin' like the doodah man
Once told me "Gotta play your hand
Sometimes the cards ain't worth a dime
If you don't lay them down"

Sometimes the lights all shining on me
Other times I can barely see
Lately it occurs to me
What a long strange trip it's been

One year ago today I was diagnosed with Invasive Lobular Carcinoma - Stage III (in truth the staging came in August after the mastectomy). One year of "survivorship" under my belt...only four to nine more years to surpass the prognosis! (How's that for a point spread!)

What a wild ride it has been these last 12 months. It is with utter amazement that I reflect back on the day my mortality was handed to me, with a soundtrack courtesy of YES reverberating through me. That day was a lifetime ago.

Today, if I am lucky, the wild ride will continue. The landscape may change, however.

What in the world ever became of sweet Jane?
She lost her sparkle you know she isn't the same
Living on reds and vitamin C and cocaine
All her friends can say is ain't it a shame

One of the realities that I discovered along this road is, that when facing your mortality it is not about "battling" a foe or trying to regain what was "normal" before. Rather, the ride is about developing a "new reality" that allows me to live with a chronic disease.

I cannot say that I have succeeded in my new reality. I don't know how "success" should be defined. What I can say is, that I have embraced the road I am on. It is a road beset with rabbit holes. It is also a road that is shrouded with many uncertainties. Yet, there can be clarity even in the darkness. At all times on the road I am cognizant of my long term objective -- the legacy, if you will. This knowledge is what helps keep me from getting too distracted by the "tea parties"* of Vitamin C & D and Calcium Glucarate.

So today, I take a breath. I embrace that I've been on the road for a year. And I note that I have more than earned the status of "survivor."

* No political connotation intended what-so-ever!

Wednesday, May 26, 2010

PSA - Support Toxic Chemical Reform

Dear Tamera,

There's been a sea-change and we need to keep the momentum going. The President's Cancer Panel (PCP), which represents the "mainstream" voice when it comes to cancer, recently adopted a position on environmental causes of cancer that we heartily support.

The April 2010 report issued by the PCP, "Reducing Environmental Cancer Risk: What We Can Do Now," takes a huge step forward - it recommends taking a precautionary approach to environmental contaminants and studying vulnerable populations (including low-income communities) that more often reside in highly polluted areas. It also calls for a more effective system to ensure that chemicals are proven safe before they are put on the market. Two decades of advocating for a healthier world are now resulting in calls for action at the highest levels!

Breast Cancer Action applauds the PCP for its thoughtful report and urges our leaders in Congress to take immediate action to reduce environmental cancer risks.

Join the Environmental Working Group in telling your Senators to support toxic chemicals reform!
If you feel inspired by this report, seize this moment and join us in supporting our allies at the Environmental Working Group by signing their online petition to ask your Senators to co-sponsor the Safe Chemicals Act. This legislation will strengthen our currently ineffective chemical regulatory system by requiring manufacturers to prove the safety of their products before consumers are exposed to them.

It only takes a minute - and the health of everyone depends on it. Thank you very much for supporting this legislation - and our work - that will lead to healthier, less toxic environments for all of us.

Be well,

Barbara A. Brenner, J.D.
Executive Director

Thursday, May 20, 2010

Oops! Where did it Go????

Have you heard the joke that begins: "...a funny thing happened to me..." ? Well, the joke is on me! Four weeks ago I went through a third round of reconstructive surgery. Part of this round included a nipple grafting. (And yes, it is as icky as it sounds. A real slice, dice, and sew job!)

On Monday, while getting dressed for court I noticed that my coveted little protrusion was gone. I went to the magnifying mirror and closely inspected the area. Yup. That's right Alice, me nipple was gone! And, yes, I did say out loud to myself, while standing in the middle of the bathroom..."CRAP, me nipple is gone." And it was said with an affected East End accent. Then I began giggling uncontrollably. It has taken me days to stop.

Indeed, the only thing that saved me from a particularly exhausting day on the criminal bench was knowing what was missing underneath the black robe!

Well, the joke continued. The next day when I stepped into my shower I saw something kinda funky in the corner. I inquisitively leaned down to inspect further. EUREKA! There IT was. In all ITS gruesome glory.

I unceremoniously rinsed IT down the closest rabbit hole -- the shower drain. Its okay, IT's biodegradable.

More than ever, my thoughts are turning back to the Lotus. And, if I want a nipple that bad, I suppose that I can always buy a truly detachable one from the neighborhood "Adult Shoppe" or Auto Zone*.

Thursday, May 13, 2010

PSA - Treatment Concerns Regarding of DCIS

Progress in Predicting Invasive Breast Cancer - Researchers Identify Biomarkers That May Help Decide Who Will Need Aggressive Treatment

By Charlene Laino
WebMD Health NewsReviewed by Laura J. Martin

MDApril 28, 2010 -- Doctors are a step closer to being able to predict which women with noninvasive breast tumors will go on to develop invasive breast cancer -- and therefore whether or not they need more aggressive treatment.

Researchers studied nearly 1,200 women with ductal carcinoma in situ (DCIS), a noninvasive and very early form of breast cancer confined to the milk ducts. They found that a combination of three tissue biomarkers was associated with a high risk of developing an invasive breast cancer with the potential to spread eight years later.

Also, DCIS that was diagnosed from a breast lump was linked to a greater risk of subsequent invasive cancer than DCIS that was diagnosed by mammography.
There's still a long way to go before the personalized approach to treatment is ready for prime time.

"But the study gets us closer to our goal of separating women with DCIS into risk groups, so as to avoid overtreatment of women with low-risk breast lesions and undertreatment of women with high-risk lesions," study researcher Karla Kerlikowske, MD, of University of California, San Francisco, tells WebMD.

The study was published online by the Journal of the National Cancer Institute.

Get Your Personalized Breast Cancer Treatment Report

Overtreatment of DCIS
Currently, overtreatment of DCIS, which will be diagnosed in over 47,000 women this year, is the big problem, according to Kerlikowske.

"Since there's currently no way to predict which women with DCIS will go on to develop invasive cancer, almost all are offered radiation after the lump is removed [lumpectomy] or mastectomy and sometimes hormone therapy. But our results suggest as many as 44% of women with DCIS may not require any treatment other than removal of the lump and can instead rely on active surveillance, or close monitoring," Kerlikowske says.

The close monitoring offers these women a safety net, she says. "If a tumor comes back, we can always give radiation then."

Radiation therapy not only carries a risk of side effects such as nausea, vomiting, and fatigue but also precludes irradiating the same area of the breast a second time, Kerlikowske says. "So you want to save it for when it is really needed," she says.

Predicting Invasive Breast Tumors
The study involved 1,162 women aged 40 and older who were diagnosed with DCIS and treated with lumpectomy alone between 1983 and 1994.

Overall, their eight-year risks of developing a subsequent DCIS or a subsequent invasive cancer were 11.6% and 11.1%, respectively.

When the researchers looked at women whose DCIS was diagnosed by feeling a lump, the eight-year risk of subsequent invasive cancer was substantially higher than average, 17.8%.

Then they looked at different combinations of biomarkers using tissue that had been stored for 329 of the women when they were first diagnosed with DCIS. These biomarkers include estrogen receptor, progesterone receptor, Ki67 antigen, p53, p16, epidermal growth factor receptor-2, and cyclooxygenase-2.

Predicting Invasive Breast Tumors continued...
The study showed that women who express high levels of three biomarkers -- p16, cyclooxygenase-2, and Ki67 -- also had a substantially higher-than-average eight-year risk of developing invasive cancer (27.3%).

The researchers stratified all 1,162 women into four risk groups. A total of 17.3% were in the lowest-risk group, with only a 4.1% chance of developing invasive cancer at eight years; 26.8% were in the next lowest risk group, with a 6.9 chance of developing invasive cancer at eight years. If the findings are validated, it is these two groups that could forgo treatment other than lumpectomy and active surveillance, Kerlikowske says.

A total of 27.6% of the women were in the high-risk group, with a nearly 20% chance of developing invasive cancer at eight years. These are the women who need more aggressive therapy with radiation and perhaps hormone therapy, she says.

Factors associated with a higher risk of having a subsequent ductal carcinoma in situ included having no cancer cells remain within 1 millimeter of the area from which the lump was removed and different combinations of biomarkers.

Unanswered Questions
Still, many questions remain.

For starters, about half of women who developed invasive cancer in the study didn't have the three biomarkers or DCIS diagnosed from a lump, so the researchers have to figure out what other factors are at play, Kerlikowske says.

Also, the approach has not been shown to actually extend lives.

Additionally, the study involved women who had undergone lumpectomy alone, which is no longer the standard of care, says Ramona Swaby, MD, a breast cancer specialist at Fox Chase Cancer Center in Philadelphia.

Recurrence rates are lower in women who also get radiation and if needed, hormone therapy, so it's important to see if the findings hold up in such women, she tells WebMD.

Craig Allred, MD, of Washington University School of Medicine in St. Louis, also calls for further study in an editorial accompanying the study. Still, "if validated, the results could optimize current therapy in certain settings: [withholding] radiation from women with low-risk DCIS, for example," he writes.

Several companies have expressed interest in helping to further develop and eventually market any tissue biomarker test, which will also need FDA approval, according to Kerlikowske.

Since it utilizes the same method and can be done at the same time doctors determine a tumor's hormone-receptor status, she doubts it will cost more than a few hundred dollars.

Funding for the research was provided by the National Cancer Institute and the California Breast Cancer Research Program.

My own personal journey is with Invasive Lobular Carcinoma (ILC) - Stage III. On my journey, however, I have had many women within my circle of contacts that have been diagnosed with Stage O DCIS. Many of whom have made tough personal choices regarding how they were going to address their diagnosis. To be candid, I have been concerned by many of the choices made. But, again, it is a personal choice and one that is never easily made. Part of my sincere hope for all women who have this early diagnosis is that they make their decisions not from visceral fear, but informed knowledge. My thoughts, prayers and hopes are with the friends, colleagues, and daughters that make up the 47,000.

Monday, May 10, 2010

PSA - Op Ed from the NY Times: "President's Cancer Panel"

May 6, 2010
Op-Ed Columnist
New Alarm Bells About Chemicals and Cancer
The President’s Cancer Panel is the Mount Everest of the medical mainstream, so it is astonishing to learn that it is poised to join ranks with the organic food movement and declare: chemicals threaten our bodies.

The cancer panel is releasing a landmark 200-page report on Thursday, warning that our lackadaisical approach to regulation may have far-reaching consequences for our health.

I’ve read an advance copy of the report, and it’s an extraordinary document. It calls on America to rethink the way we confront cancer, including much more rigorous regulation of chemicals.

Traditionally, we reduce cancer risks through regular doctor visits, self-examinations and screenings such as mammograms. The President’s Cancer Panel suggests other eye-opening steps as well, such as giving preference to organic food, checking radon levels in the home and microwaving food in glass containers rather than plastic.

In particular, the report warns about exposures to chemicals during pregnancy, when risk of damage seems to be greatest. Noting that 300 contaminants have been detected in umbilical cord blood of newborn babies, the study warns that: “to a disturbing extent, babies are born ‘pre-polluted.’ ”

It’s striking that this report emerges not from the fringe but from the mission control of mainstream scientific and medical thinking, the President’s Cancer Panel. Established in 1971, this is a group of three distinguished experts who review America’s cancer program and report directly to the president.

One of the seats is now vacant, but the panel members who joined in this report are Dr. LaSalle Leffall Jr., an oncologist and professor of surgery at Howard University, and Dr. Margaret Kripke, an immunologist at the M.D. Anderson Cancer Center in Houston. Both were originally appointed to the panel by former President George W. Bush.

“We wanted to let people know that we’re concerned, and that they should be concerned,” Professor Leffall told me.

The report blames weak laws, lax enforcement and fragmented authority, as well as the existing regulatory presumption that chemicals are safe unless strong evidence emerges to the contrary.

“Only a few hundred of the more than 80,000 chemicals in use in the United States have been tested for safety,” the report says. It adds: “Many known or suspected carcinogens are completely unregulated.”

Industry may howl. The food industry has already been fighting legislation in the Senate backed by Dianne Feinstein of California that would ban bisphenol-A, commonly found in plastics and better known as BPA, from food and beverage containers.

Studies of BPA have raised alarm bells for decades, and the evidence is still complex and open to debate. That’s life: In the real world, regulatory decisions usually must be made with ambiguous and conflicting data. The panel’s point is that we should be prudent in such situations, rather than recklessly approving chemicals of uncertain effect.

The President’s Cancer Panel report will give a boost to Senator Feinstein’s efforts. It may also help the prospects of the Safe Chemicals Act, backed by Senator Frank Lautenberg and several colleagues, to improve the safety of chemicals on the market.

Some 41 percent of Americans will be diagnosed with cancer at some point in their lives, and they include Democrats and Republicans alike. Protecting ourselves and our children from toxins should be an effort that both parties can get behind — if enough members of Congress are willing to put the public interest ahead of corporate interests.

One reason for concern is that some cancers are becoming more common, particularly in children. We don’t know why that is, but the proliferation of chemicals in water, foods, air and household products is widely suspected as a factor. I’m hoping the President’s Cancer Panel report will shine a stronger spotlight on environmental causes of health problems — not only cancer, but perhaps also diabetes, obesity and autism.

This is not to say that chemicals are evil, and in many cases the evidence against a particular substance is balanced by other studies that are exonerating. To help people manage the uncertainty prudently, the report has a section of recommendations for individuals:

¶Particularly when pregnant and when children are small, choose foods, toys and garden products with fewer endocrine disruptors or other toxins. (Information about products is at or

¶For those whose jobs may expose them to chemicals, remove shoes when entering the house and wash work clothes separately from the rest of the laundry.

¶Filter drinking water.

¶Store water in glass or stainless steel containers, or in plastics that don’t contain BPA or phthalates (chemicals used to soften plastics). Microwave food in ceramic or glass containers.

¶Give preference to food grown without pesticides, chemical fertilizers and growth hormones. Avoid meats that are cooked well-done.

¶Check radon levels in your home. Radon is a natural source of radiation linked to cancer.

I invite you to visit my blog, On the Ground. Please also join me on Facebook, watch my YouTube videos and follow me on Twitter.

Thursday, May 6, 2010

The Power of the Lotus


Lotus flowers are amazing and have strong symbolic ties to many Asian religions especially throughout India. The lotus flower starts as a small flower down at the bottom of a pond in the mud and muck. It slowly grows up towards the waters surface continually moving towards the light. Once it come to the surface of the water the lotus flower begins to blossom and turn into a beautiful flower.

Within Hinduism and Buddhism the lotus flower has become a symbol for awakening to the spiritual reality of life. The meaning varies slightly between the two religions of course but essentially both religious traditions place importance on the lotus flower.

In modern times the meaning of a lotus flower tattoo ties into it's religious symbolism and meaning. Most tattoo enthusiast feel that the a lotus tattoo represent life in general. As the lotus flower grows up from the mud into a object of great beauty people also grow and change into something more beautiful (hopefully!). So the symbol represent the struggle of life at its most basic form.

Lotus flower tattoos are also popular for people who have gone through a hard time and are now coming out of it. Like the flower they have been at the bottom in the muddy, yucky dirty bottom of the pond but have risen above this to display an object of beauty or a life of beauty as the case might be. Thus a lotus flower tattoo or blossom can also represent a hard time in life that has been overcome.

Thursday, April 29, 2010

Decisions of a "General Contractor" - To Trust or Not to Trust


. . .The question in my mind is: is it necessary to do anything?

While I ponder that unceasing question, I have begun introducing bee pollen into my daily regimen. (As well as reading the "Beatles Anthology" from cover to cover - I'm up to the year 1965!) What the heck. It makes as much, if not more, sense than what I keep running into in the medical arena.
. . .

Well . . .

I have been pondering the question, and I have come to one decision: time to change Dr. GYN. It's sad - as I have been with this same group since 1995, and it may seem a bit reactionary, but I cannot overlook the historical facts.

Fact one: it was this GYN group that had put me on Paxil, and kept me on it during a pregnancy. Paxil is now known to cause birth defects and miscarriages. That pregnancy ended in a long & drawn out miscarriage as we watched the fetus's heart beat slowly slow down over time. At that time, I kept questioning what was causing this miscarriage, and if it could be the Paxil. Dr. GYN was adamant that Paxil had no known side-effects that would cause a miscarriage. In their defense, the public's knowledge of Paxil's side effects is just now becoming more readily accessible. My research at the time (1998) however, did uncover that there was indeed room for concern. I took myself off the Paxil and went on to conceive and give birth to a healthy baby boy three years later.

Fact two: it was this GYN group that gave me injections of progesterone for 6 months to treat my amenorrhea. This was after my mammograms and physical exams identified a palpable mass that was mislabeled as "dense fibrous tissue." The current information on progesterone is:

Scientists at Michigan State University (The team of faculty is part of MSU's Breast Cancer and the Environment Research Center, one of four centers nationwide funded by the National Institute of Environmental Health Sciences and the National Cancer Institute. The center brings together researchers from MSU's colleges of Natural Science and Human Medicine to study the impact of prenatal-to-adult environmental exposures that may predispose a woman to breast cancer.) have found exposure to the hormone progesterone activates genes that trigger inflammation in the mammary gland. This progesterone-induced inflammation may be a key factor in increasing the risk of breast cancer. . . ."Progesterone turns on a wide array of genes involved in several biological processes, including cell adhesion, cell survival and inflammation," said physiology professor Sandra Haslam, co-author of the paper and director of the Breast Cancer and the Environment Research Center at MSU. "All of these processes may be relevant to the development of breast cancer."

Fact three: This GYN group is the same group that did not question the identification of the mass in my breast as "dense fibrous tissue." The mass was initially identified in 1993 (while I was still in law school) and then again in 1995 when I was referred to the current GYN group (after we moved to the Southwest). The mass at the time was negligible in size (as compared to the 6.2 cm malignant tumor that was excavated from my breast in August 2009). Rather, they went with the radiologist's report. I did not know enough at that time to question the veracity of the radiologist's report myself! Hindsight is proven once again to be 20/20!

Inter script - ILC (invasive lobular carcinoma) can really only be conclusively diagnosed through an MRI. No one offered or suggested an MRI beginning in 1993. I did not know to ask. Why would they think to do so? Why would I ask? As far as Dr. GYN and I knew I had no risk-factors to direct us to think in terms of breast cancer. My issue, however, is that when I became acutely symptomatic in early 2009 (and it took me nearly 3 months to get an appointment with Dr. GYN) with minor research I discovered the need for an MRI as a definitive diagnostic tool, as opposed to the conventional diagnostic mammogram. Dr. GYN did not send me for an MRI, he sent me for a diagnostic mammogram.

Fact four: I am now being "diagnosed" with Ovarian Remnant Syndrome (OSR) although, again, my research informs me that this can only be definitively diagnosed by an MRI. Again, Dr. GYN did not suggest doing this. Why is this important? Well, in my own research of how ILC metastasizes, the ovarian area is particular susceptible. The MRI may be the only way for me to put to rest of what this "undefined residual tissue" really is.


(oh...btw...I am now into 1966 in the Beatles Anthology! Fabulous escapism!)

Tuesday, April 27, 2010

Hmmm...Health Care Reform Needed...Ya Think???

...Long story short, I went directly to the radiologist and requested that he re-read the films and do an addendum to his findings. This request was accompanied by a full history of my 1981 oophorectomy. I am pleased to say that the radiologist did so in less than 24 hours -- and directly sent me the addendum to his report. Finding?, it is not an ovary that is present, but rather, "undefined residual tissue." And, yes, this residual tissue does measure larger than the one intact ovary. Now this needs to be explained because back in 1998 I had the residual scar tissue from the 1981 oophorectomy laparoscopically removed.

What now? I dunno? I have faxed this new info to my specialists to wait for their response, if any. ...

(Just as a refresher...I have been experiencing "non-specific" symptoms that no one seems to be able to define.)

So, my health care travails and travels took me to both a GI specialist (gastro-intestinal specialist) and my long-attended GYN's office. And. . ., in the arena of "interesting" neither failed to disappoint.

The GI (a very pleasant 60-ish guy with a wry sense of humour) attributed my "non-specific" symptoms, in part, to a .... displaced rib. What? Really? His learned opinion, after a physical exam, was that my "floating rib" (ya know, the one that belonged to our forefather, Adam) is displaced and is irritating my liver and stomach. Oh, Adam's Rib is the cause of the persistent pain in my side? Figures, doesn't it...pain can usually be traced back to a male ;+P. What about the unexplained weight-gain, chills and fatigue? "No, a displaced rib would not cause those symptoms." So, any thoughts on those? "No, not really." Oh? Well thank you for your time (?) Dr. GI gave me a brown-paper bag of pharmaceutical samples and said that all should resolve itself in 6-8 weeks. The samples were for heartburn. Heartburn is not one of my symptoms! I guess Dr. GI did not want me to leave empty-handed. Thoughtful.

Next stop? The other end of my abdomen...

My current GYN (who absorbed the practice of my first AZ GYN...(ewww, I so did not say absorbed!) and who has seen me through a couple of miscarriages (yet somehow missed the entry in my medical records regarding the oophorectomy. But he did see that his prior partner had done the subsequent laparoscopy for the residual scar tissue) duly considered the ultra-sound and PetScan results. He determined that I was one of those rare women who experience Ovarian Remnant Syndrome! What? Really? (I feel like its deja vu all over again. I just don't know for what!!)

Ovarian Remnant Syndrome (ORS): A rare condition where ovarian tissue is left in the pelvic cavity following the removal of ovaries and fallopian tubes causes pelvic pain. The tissue that is left behind can form cysts which can enlarge and pull on nearby adhesions causing pain. Pain can also occur when remaining ovarian tissue produces hormones that stimulate endometriosis.

My research tells me that the only way to accurately diagnosis OSR is an MRI and/or another laparoscopy. Dr. Onc had offered to do an MRI to explain the "undefined residual tissue." Dr. GYN did not offer the MRI. And, I must keep in mind that Dr. GYN and his partner/predecessor concurred (or rather, did not question) my prior mammograms' characterization of my breast cancer as solely "fibrous tissue."

The question in my mind is: is it necessary to do anything?

While I ponder that unceasing question, I have begun introducing bee pollen into my daily regimen. (As well as reading the "Beatles Anthology" from cover to cover - I'm up to the year 1965!) What the heck. It makes as much, if not more, sense than what I keep running into in the medical arena.

So for now, I will buzz on!

Wednesday, March 31, 2010

Listening for Footfalls

Having a Stage III cancer diagnosis, it is nearly impossible to not have moments (sometimes a daily moment) when the reality of this state of being crosses my mind. Typically, it is a fleeting acknowledgment generated by an "in your face" reminder (e.g., a la Susan B Komen!). Or, it is a mental-embracing when I find out that yet another person's life is being threatened with breast cancer.

But then, there are the other times...

The other times are when a persistent ache, symptom, discomfort, or anomaly continues for days or weeks. Then my thoughts turn to: what if? What if this is a symptom of the cancer having metastasized and that little tid-bit is/was undetected or misread on the PetScan? And then I think, PetScans are only snapshots of how you were doing, not how you ARE doing. And I think, my 6.2 cm tumor was most likely growing in my body for approximately 10 years (given the reported indolent nature of ILC) and no medical doctor picked it up. Indeed, my past screening mammogram readings mis-characterized the tumor as "fibrous tissue" - and this was with a palpable lump. It was only after my breast started become visible affected that a diagnostic mammogram was ordered. Sigh...but that's just boobie under the bridge. So, then I tell myself, I think way too much.

But then, again, I am reminded of the impreciseness of medical science...

Last week I got the results of (invasive) tests, conducted for the purpose of trying to define "persistent aches, symptoms, discomforts and anomalies." One of the tests matter-of-factly described the presence of a right ovary; and apparently that this right ovary is substantially larger than my left ovary. This would not be disturbing but for the fact that I HAD MY RIGHT OVARY REMOVED IN 1981! When I brought this minor inconsistency to the attention of my oncologist's office (yes, my third!) I was told: "they can only go by what the radiologist read." Oh...and by the way no, ovaries do not typically grow back!

Long story short, I went directly to the radiologist and requested that he re-read the films and do an addendum to his findings. This request was accompanied by a full history of my 1981 oophorectomy. I am pleased to say that the radiologist did so in less than 24 hours -- and directly sent me the addendum to his report. Finding?, it is not an ovary that is present, but rather, "undefined residual tissue." And, yes, this residual tissue does measure larger than the one intact ovary. Now this needs to be explained because back in 1998 I had the residual scar tissue from the 1981 oophorectomy laparoscopically removed.

What now? I dunno. I have faxed this new info to my specialists to wait for their response, if any.

And I sit here and think. Having a stage III cancer diagnosis, while not consuming (excuse the pun) my daily life still interjects an eerie component into my thinking. It's like my subconscious is ever vigilant in listening for silent, yet anticipated, footfalls.

Tuesday, February 16, 2010

PSA - What is Your Exposure to PERC?


Dry Cleaning Chemical 'Likely' Causes Cancer
National Academy of Sciences Panel Agrees With EPA Analysis of the Risks of PERC

By Daniel J. DeNoon
(WebMD Health News)
Reviewed by Louise Chang, MD

Feb. 9, 2010 - PERC really is a "likely human carcinogen," the National Academy of Sciences says.

PERC is a chemical known as perchloroethylene or tetrachloroethylene. It's the solvent used by about 85% of U.S. dry cleaners, but is also used as a metal degreaser and in the production of many other chemicals.

PERC is found in the air, in drinking water, and in soil. It can be detected in most people's blood, as well as in breast milk. What's the risk?

In 2008, the Environmental Protection Agency (EPA) suggested that PERC be classified as a "likely human carcinogen." Moreover, the EPA found that PERC's most dangerous noncancer toxicity is brain and nervous system damage -- and set safe exposure levels well below levels that cause such damage.

But rather than finalize the ruling, the EPA asked the prestigious National Academy of Sciences to review it's PERC risk analysis and to tell the EPA if it's system for analyzing chemical risk was correct.

Now the expert panel appointed by the National Academy of Sciences says the EPA was basically correct. The panel agreed that:

* PERC is a "likely human carcinogen." This means that while there's no definitive proof that the chemical causes cancer in humans, there's strong evidence it does -- and there's proof that the chemical causes various cancers in animals.
* PERC's most dangerous noncancer effect is nerve and brain damage. Safe exposure levels for drinking water and air quality should be set well above levels that can cause such damage.
* The EPA's system for evaluating chemical risk is basically sound, although procedures for evaluating the strength of relevant studies need to be strengthened.

"We praised the EPA for doing a very thorough job," panel member Ivan Rusyn, MD, PhD, a toxicologist at the University of North Carolina, tells WebMD. "The overwhelming opinion of the committee was that the EPA was correct."

The major complaint the committee had with the EPA was that it put too much emphasis on a single study in setting the safe concentration level. That level is calculated by finding the highest dose that does no harm and dividing that dose by 1,000 or more to err on the side of safety.

The EPA suggested that a safe PERC concentration would be 2 parts per billion. The National Academy of Sciences committee used several different studies to calculate a slightly higher safe level, between 6 and 50 parts per billion.

"This is an immaterial difference," Rusyn says.

The National Academy of Sciences panel ruled only on the science used by the EPA and did not offer any policy advice on the use of PERC by dry cleaners or other industries. Such policies are for the EPA, Congress, and the states to decide.

California, for example, in December 2007 passed a law that will outlaw the use of PERC in that state by the year 2023. The California law also requires removal of all dry cleaning machines 15 years old or older by July 1, 2010. As of July, no PERC machines may be used in buildings shared with California residences.

PERC is not the same chemical as perchlorate, a different environmental contaminant used in products such as rocket fuel and fireworks.

The Halogenated Solvents Industry Alliance Inc., a chemical industry group that has criticized the EPA's draft assessment of PERC, was unable to respond to WebMD's request for an interview in time for publication.

Saturday, January 30, 2010

I revisited the Dodge Theatre last night. It was for an incredible night of music. Fusion as defined by Merriam Webster. The Phoenix Symphony performing the music of Queen and Led Zeppelin. Not as bizarre as it sounds. They had vocals, base and lead guitar, electric violin, and the most incredible set drummer! All supported by the richness of the symphony. I must say it was the first time I had ever seen a symphony conductor leap and jump into the air!

What was even more significant, for me personally, was that I could enjoy myself. You see, I have had a negative association with the Dodge Theatre. I had received my diagnosis of breast cancer (ILC - later to find out its Stage III) just hours before I attended a YES concert there back in July, 2009. At the time, my husband kept asking: Are you sure you want to do this? We can find someone to take the tickets! I was adamant. I wanted normalcy. I had been looking forward to this concert for months. Besides, I am singly most happy when I am at live concerts. (Which, hopefully, explains my 4 Stones concerts during their Big Bang tour that I attended in two different states. I know, the word groupie comes to mind...but that is the stuff of another TMZ moment!)

So I went.

So, it was an emotional disaster.

First mistake. The 3 double Cosmopolitans I drank in fairly short order.

Second mistake. Underestimating the emotional effect that music can have.

Look around - Got no place to stay.
God I hate this town, depending on the day.
You look me up, you look me down - Alright, OK.
While I got no life, I got no hope;
I'm falling in love.
Help me through the fight;
Help me win tonight - I'm calling.
What to do I find it hard to know;
The road I walk is not the one I chose
Lift me up and turn me over;
Lead me on into the dawn.
Take me to the highest mountain;
Tie me up, love in a storm.
Have you decided on my fortune?
Facing the future in your eyes,
With your imperial behaviour
We fight amidst the battle cries.
Open doors - They may be closed to me;
The fire's still burning in my heart...
What to do I find it hard to know;
I want to turn my life around...

Those lyrics, plus having a bladder the size of walnut, sent me into the ladies room where I had a complete emotional breakdown. The brunt of this breakdown borne by a dear friend whom I woke up two time zones away. Damn cell phones!

I have not wanted to remember this moment of vulnerability, because it was just that...a moment of vulnerability. (I do not do well flaunting my vulnerabilities.)

It was a moment of base, raw emotion -- fear / anger / hostility / desperation / despair all rolled into a maelstrom of unplugged emotion (forgive the concert pun). I did not want to remember how much I scared my poor husband, disappearing on him like that; or the horrific car ride home I had inflicted upon him.

It was all so primal that I was not ready to claim it until last night.

Interestingly, or trite...depending on your personal level of cynicism, it was a set of back-to-back songs that allowed me to make peace with myself regarding my prior indulgence. And both belonged to Queen.

There's no time for us
There's no place for us
What is this thing that builds our dreams
Yet slips away from us
Who wants to live forever?
Who wants to live forever.....?
There's no chance for us
It's all decided for us
This world has only one sweet moment
Set aside for us
Who wants to live forever?
Who wants to live forever.....?
Who dares to love forever
When love must die?
But touch my tears with your lips
Touch my world with your fingertips
And we can have forever
And we can love forever
Forever is our today
Who wants to live forever?
Who wants to live forever?
Forever is our today
Who waits forever anyway?

Is this the real life?
Is this just fantasy?
Caught in a landslide,
No escape from reality
Open your eyes, Look up to the skies and see,
I'm just a poor boy, I need no sympathy,
Because I'm easy come, easy go, Little high, little low,
Any way the wind blows doesn't really matter to me, to me

What can I say? I am a child of the '70s who has always taken refuge and found self-forgiveness in prose, lyrics and rock 'n roll.

This time when I left the Dodge Theatre I did so without needing to be supported. But enjoying the long-haired crowd, humming Stairway to Heaven (no kidding, it was the final song!) and enjoying the full moon illuminating the 65 degree night-time in the desert.

Wednesday, January 27, 2010




Hello TC,

We are trying to locate a doctor in for my daughter, and it's not easy. Do you have any suggestions on find the best MD?

We have the name of an Oncologist (a highly recommended woman doc), and thought that it was the Onco that did the surgery. Now we understand that a surgeon does the operation and the Onco handles the case afterwards. Are we correct about this?

Thanks much.


The “traditional medical team” is made up of the following:

Surgical oncologist – this person is integral in the initial stage, but a transitory person in the long haul of the journey. They are the person who your daughter will work with on determining if and if so, which sort of surgery is appropriate (e.g. lumpectomy, mastectomy, nipple-sparring, tissue-sparring, NO surgery at all). Once healed from the surgery, and margins are clean, this medical professional ceases to have a role.

The surgical oncologist, however, is the doctor you request to have the tumor and tissues sent to Genomics in California for the Oncotype DX test. If the surgical oncologist won't do it, then insist that the medical oncologist does. Don't be talked out of this test - it is the only reliable determiner available to us in the U.S. to gauge the efficacy of chemotherapy on our individual cancer. (There is a Mammaprint test available now as well. The problem, the only lab that has the patent on this is in Phoenix, and a Mammaprint can only be conducted on "fresh" from the slab tumor/tissue.) I was also told by several pathologists that the particular patent that the Phoenix lab obtained is not quite the same caliber as the one in Europe.

It is also after the surgery and the pathology analysis that she should then have her results sent to Michael Lagios, MD in Marin County for re-evaluation and adjuvant treatment recommendations. (See blog entry dated January 23, 2010.)

Medical oncologist – this is the person whom you have a life time relationship. They advise and help you determine if and what type of adjuvant treatment she will have (i.e., chemo and other drug protocols [tamoxifen, etc.])They follow you for the first year or two every 3 months, 2-5 years every six months, and thereafter annually – they follow you to track recurrence. This is the medical person that you use to determine your long term quality of life. (And, this is the person that I personally am having a tremendously difficult time in finding that fits with my perspective on my cancer. I have interviewed four so far.)

Radiation oncologist – this is the person who, if you choose to do radiation, will handle that portion of the adjuvant treatment. There are great variances in this field so interview radiation oncologist thoroughly. Ask what type of equipment they have and how they target the chest wall. Radiation can have serious side-effects ranging from skin-burning to weakening of the heart. Make sure that if you choose radiation, that you do your homework!

NO TREATMENT DECISIONS SHOULD EVER BE MADE OUT OF FEAR...! The only long term decisions that you can live with are the ones you make from a point of knowledge.

Reconstructive surgeon – (aka a plastic surgeon who specializes in reconstructive surgery). This specialization is absolutely necessary to have any sort of livable outcome. A good surgical oncologist will work with the reconstructive surgeon and allow them to determine the incisions, since they do so from a perspective of your long term, dare I say . . . aesthetic, outcome.

For me, the integral person has been my naturopathic oncologist. Not many reputable ones around, but I found the one who developed and formalized this area of alternative medicine. It is this doc, Daniel Rubin, ND FABNO, whom I am working with in developing my adjuvant treatment -- I have opted out of the traditional protocol of chemo/drugs/radiation.

Finding is a good medical oncologist is difficult. I suggest that your daughter speak to the surgical onc and get a few names of whom they work with. I would also google med oncs in your area and get names and then start looking up their medical profiles and histories. I also found that using “” (it’s a paid on line service) was good in reading patient reviews of doctors. Once she has a short list, and has done her due diligence, start face-to-face interviewing – go in with her notebook and questions ready!

The most important thing to remember is that the patient needs to do the interviewing (not the other way around). The patient, is the “employer” and/or “general contractor” of her own healthcare.


TC's Post...Post Script

I completely forgot to mention the involvement of a geneticist! Early on this journey, after my first interview of a prospective surgical oncologist, I met with and got tested by a geneticist. This was to help answer the WHY??? The purpose was to determine if I had any genetic predisposition toward cancer. Having no information or contact of and with my biological father in 42 years, I could not definitively say there was no family history of cancer. The answer to this question would help guide me on this journey, and help answer questions regarding my children's future. This is the testing for the BRCA1 and BRCA2 - in addition to looking at other genetic markers.

I pleased to say I passed the test -- no genetic predispositions!

If you are a women of Ashkenazim descent, there is an additional genetic screening that should be done.