Random Acts of Kindness - A New Year Reflection

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As I prepare for the upcoming new year, Rosh Hashanah, and the commensurate 10 days of teshuvah, I find my thoughts fixating not on thoughts of forgiveness, but rather appreciation.

THE single most important thing that I have experienced since my breast cancer diagnosis is the random act of kindness. The appreciation and gratitude that I feel cannot be overstated. Some of the acts have been done knowingly. Some have been inadvertent. Some have come from “expected” sources. Other acts have been from totally unexpected realms. All have been warmly welcome.

For someone who is professional (and emotionally) immersed in an area of law that daily exposes me to the ugly underbelly of human character (I am a children’s advocate whose professional and philanthropic endeavors are centered around abused and neglected children) I am not that accustomed to the kinder gentler side of the human condition. Additionally, as both a “Type-AAA+” and “care-taker” personality, I typically don’t allow myself to be on the receiving end of assistance. I suppose for me during these days of teshuvah, appreciation is a requisite step toward redemption.

As such, I have been blown away, and softened, by the large hearts that beat around me. To share just a few…

…the email support that I received from the lady who started the “Breast Camp Boot Camp” who communicated diligently with me from diagnosis to surgery. I wouldn't be able to pick her out of a police line-up (we have never met face-to-face), but her words were memorable. THANK YOU!

…the store manager and sales clerk at the Brighton boutique at the Chandler Fashion Center who gave me a selection of jewelry gift pouches to aesthetically conceal the “D-bombs” that were my forced companions up until this past Friday, asking only that I “get better.” THANK YOU!

…the additional complimentary weekly “house maintenance” offered by my cleaning lady of 6 years. THANK YOU!

…the “hospital care package” that a big-hearted lady gave me, that included a pound of dark chocolate (to be used for medicinal purposes only, oh yeah), a selection of Burt’s Bees lip balms, a super cute hospital cami (complete with skull & cross bones (eh ?????) and a “Don’t Lose Your Style” breast cancer survival book. One of the inadvertent “gifts” that was the “value-added” to this care package was NOT encasing it in the odious ICBC PINK. (she chose purple). The other, was found within the pages of the Style book that provided me with my first introduction to the existence of the Oncotype DX test! THANK YOU!

…the amazing meals that extremely busy friends brought over to our Phoenix home, both while I was hospitalized and afterwards. The ladies who went out of their way to care for my family and myself are those friends who, because we are all busy professionals and moms, cannot find social time for ourselves. Yet, despite their own stress-filled lives (and the fact that we have not had time even for a phone call all summer), brought meals that not only sustained the body, but truly nourished my family’s collective soul. (My 8-year old exclaimed his appreciation, rather dramatically, for one in particular. After he took his first mouthful he cried out joyfully “brisket made by G-d”.) THANK YOU!

…the flowers, letters, and cards from so many people, including the unexpected communications from my adopted-sibling’s mother; the mother of a chess team-mate of my 8 year old; and the 80-something year old cousin of mine that I have not seen in 45 years (and she's still alive and kicking!). THANK YOU!

…the diligent and caring, blog-following, communication, outreach and support, and pressies (some that made me blush and giggle) from old friends – even a couple from boarding school of who’s friendship had been dormant for 30 years, but rekindled without question. THANK YOU!

And so much more… THANK YOU! ... L’shanah tovah!

Just Practicing - An Update

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I have heard from 6 lovely friends over the last three days. The commentary is all the same. I have read your blog and know what is happening, but HOW ARE YOU FEELING?
I found this an interesting question. Interesting, because this blog is my emotional outlet. The narrative of HOW I AM FEELING. So, I re-read my entries, and tried to be objective. From the entries it would seem to me that my feelings are indeed all encapsulated on this blog. They can be summed up, and in no significant ranking, as:




Frustrated
Cynical
Sardonic (is that a feeling?)
Appreciative
Challenging (more of an action-word, I know. but anyone who knows me knows that I am constantly in-motion)
Surreal (a sensation yes, but an emotion? probably not, but I include it because it really does captures the daily state of my mental being)

So, looking at the above list, it appears fairly comprehensive -- to me -- of where my head and emotions have been these last few weeks. With that in mind, to answer the question, how am I feeling?

WEELLLLLLLLLL..........

I hit my 3 week mark since the mastectomy and I am frustrated at my lack of stamina and the screaming of my nerve endings in the surgical site! Reminder: a mastectomy is the lobing off of an appendage, albeit a small and inconsequential one. Nonetheless, there is "shadow" pain associated with a missing appendage - no matter the nature of the protrusion.

I asked the reconstructive surgeon if it was "normal" to feel like my body is trying to purge the expander, a la Sigourney Weaver and ALIENS. YES! He answered quite enthusiastically. Apparently I just came up with another way of describing that my body is vociferously objecting the presence of a prosthetic.

What is surreal, is that I am a card-carrying prosthetic recipient. A synthetic "expander" now occupies the space under my chest-muscle wall, directly underneath where my breast innards used to be. Got the card in my wallet, complete with a picture and model #. I'm supposed to carry it there as a "just in case." Like, just in case I'm in an accident and the bugger pops! So with the card and the clean thong I keep in my handbag I'm giving a whole new meaning to the Girl Scouts motto: "Be prepared!".

I am frustrated in that speaking to the med pros, here in-state and out-of-state, I cannot pin down a personalized prognosis. (This is the second most asked question I get.) All I get is the insistence that in order to statistically have a chance at the "standard" 10 year survival rate for ILC I must succumb to the standard adjuvant treatments.

The emotional and mental challenge of this lack of individualistic answer is that my PetScan came back with NOTHING, NADA, RIEN, NICHTS remarkable. Indeed, my margins after the removal of the entire left-lady were clean. Annnnnddddd, of the 3 lymph nodes removed, only one had "uncontained" tumor cells -- which, apparently as of 4 weeks ago the ICBC* concluded that the course of action is "do nothing." (BTW, what I could glean from this medical verbiage essentially amounted to: "dunno why this is the recommendation," but maybe it based on the assumption that the tumor cells could have been placed in that node by virtue of the initial diagnostic biopsy. OOPS! Medical conclusion, if that is the case, is that the little buggers won't survive because the environment they were "pushed" into is not conducive for them to grow. Hmmm.  I summarized my understanding to the onc surgeon who responded, "yea...pretty much.")

How can I not be frustratingly sardonic, cynically appreciative of my situation, and surreally (sp..word?) challenged but all this expertise and knowledge?

All cynicism aside, and most importantly, I truly appreciate the random acts of kindness that I am shown daily by those who are following (and commenting on) my blog; those who care enough to ask me questions; and those who are thinking of me -- no matter WHAT you are thinking - at least I am in your thoughts.


*ICBC = industrial complex of breast cancer

PSA - I am not alone in my subversive tendencies!

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Subject: Pink will never be the same

http://www.bcaction.org/

Dear Friends,

I'm sure you've noticed that the color pink is now synonymous with breast cancer "awareness." Every year, thousands of companies boost their sales and their image during Breast Cancer Awareness month by tacking pink ribbons to products that range from Vespas to toilet paper (yes, even a "Wipe for the Cure" promotion). Pink ribbon cause marketing is a racket that far too often exploits breast cancer.

This October, we invite you to see pink from a whole new perspective.

Join us in San Francisco at the ArtHaus Gallery to view an exhibit featuring Bay Area and New York artists responding to the pink ribbon industry that has emerged around breast cancer. Once you see this show, you'll "Think Before You Pink®" in a whole new way.

Opening reception: Friday, October 2nd, 6-9pm.
(Exhibit runs through October 31st, 2009.)
ArtHaus Gallery is located at 411 Brannan Street, San Francisco, CA
20% of all exhibition sales will
benefit BREAST CANCER ACTION from October 1-31st, 2009.

A limited edition poster "This Elixir - It Won't Fix Her" is available for $50 (plus shipping and handling). To purchase your poster contact BCA @ 415-243-9301 ext. 22. All proceeds from the poster benefit BCA.

For our friends outside the Bay Area, throughout October the exhibition will be available to view on line at www.arthaus-sf.com.

See you there!

Breast Cancer Action | 55 New Montgomery St. #323 | San Francisco, CA 94105
Toll-free at 877-2STOPBC (278-6722) | www.bcaction.org | www.thinkbeforeyoupink.org

What is NOT wrong with this picture ?

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The phrase "above all, do no harm" is usually attributed to the Hippocratic Oath. Hmmm...if this is true, then it begs the question: what is NOT wrong with this picture . . . ?

I spent a full month researching and locating the "top" breast cancer specialists in Arizona. I narrowed the search down by personally interrogating (I mean, interviewing) the reported "best of the best." Those who made my final cut (OUCH!) were fully vetted. When I speak to the lay people involved in the ICBC, Inc.* I got, and still get, the collective nod of approval. (visualize bobble-head dolls.) This should give me peace of mind, no? (and I am not referring to the bobble heads). Having such a prestigious medical team should allow me the needed space to relax and trust in their learned opinions, right? After all, I chose them. So, if this is the case, then WHY is it...

...that I had to ask my medical oncologist to order a PetScan? Each varied member of the med-pro squad kept talking about the integral information that a PetScan can provide to assess the need and breadth of adjuvant treatments. Not to mention that the results would significantly add to the conversation of prognosis. Despite this apparent necessity not one of the Med-Squad wrote a script for a PetScan, until I insisted.

...that I had to request my medical oncologist send my tumor to the only lab in the U.S. that conducts an Oncotype DX test on malignant breast cancer tumors. Recall back to the PSA on August 31.. Why did I have to be the one to ask when my cancer, prima facie, fits the criteria to be tested. And, the results of this test can be a key factor in whether and what adjuvant treatment(s) would have the greater positive impact soup.

...that the "insurance compliance division" of the Oncotype DX lab is required to inform me, prior to running the test, that my health insurance policy (and I am talking about top-of-the-line PPO coverage) may not cover the cost of the test, unless the ICBC, Inc.*  is satisfied that the test is medically necessary?

Whaaaa ??? Rewind !!! Let's review the facts:

(1) According to a Journal report of the American Society of Clinical Oncology, 85% of patients don't benefit from chemo; and according to a talk this summer given by the head of the International Genome Consortium (Bob Pennie), the number is actually 90% of patients do not benefit;

(2) that the standard "cookie cutter" dispense of chemo is 8 cycles and the cost of the 8 cycles is 2x the cost of the Oncotype DX test;

(3) that the medications prescribed to help mitigate the nasty little side-effects of chemo can run up to 1/2 of the cost of the Oncotype DX test; and

4) that these same nasty little side-effects can create long term health issues that have the potential of running up unimaginable costs for both the insurance company as well as...oh yeah...the one with the cancer.

The silver lining to this disconnected thinking is that the Oncotype DX lab has its own in-house appeal division to deal with the idiocracy of the insurance company. The lab, Genomics in California, offers a free-of-charge 3-tier appeal process because they deal with this reactive thinking all the time.

Those who want to maintain the current health care status quo would point to the lab's "enlightened service" as an example of how the market system works. I.e, a need was identified and the market forces filled it!

Sigh...in my world, this mental myopia is a cancer in and of itself.

And what about the promoted adjuvant treatemtns...like, Tam-toxic-fen?

Tamoxifen is a "Selective Estrogen Receptor Modulator" intended to be prescribed to women with DCIS (ductal carcinoma in situ) -- a non-invasive disease, and which is reportedly 99% curable without Tamoxifen. This "wonder drug" has been proven to quickly cause thickening of the uterus - a precursor to uterine cancer. Indeed, Tamoxifen increases the risk of two types of cancer that can develop in the uterus: endometrial cancer, which arises in the lining of the uterus; and uterine sarcoma, which arises in the muscular wall of the uterus. In the initial trials of Tamoxifen in the 1970s, a significant amount of women died, not of their breast cancer, but of endometrial (uterine) cancer. Like all cancers, endometrial cancer and uterine sarcoma are potentially life-threatening. As such, the World Health Organization thought it prudent to list Tamoxifen as a "cancer-causing" drug. In addition, the Med-Pros appear to gloss over not only the 2x higher rates of endometrial cancer in women with breast cancer, but also the increased rates in blood clot diseases (pulmonary embolism, deep vein thrombosis, strokes) and cataracts caused by the drug.

Indeed, in most of the NCI (National Cancer Institute) study results that I have reviewed, there did not appear to be any statistically significant difference in the chance of dying whether or not a woman took Tamoxifen. Nor, did there appear to be a difference in breast cancer deaths overall. There are projections of long-term improvements in survival, but they are only projections. According to the National Women's Health Network's analysis of the Tamoxifen claims, if you take out unknown, unrelated, or non-GYN cancers, the exact same number of women appear to have died in both test groups. It is also known that minority women were not well represented in this study, in spite of efforts to do so. So whatever the final results may be, they may not apply to all women.

Across the pond, in Britain's reputable Lancet medical journal, a European study showed that when Tamoxifen was taken for the standard cookie cutter 5-years, the risk of uterine cancer increased by 6.9%, and, the developed cancer was of a more deadly strain. Benraadt , Coenbergh W et al. Risk of endometrial cancer after tamoxifen treatment of …FE Van Leeuwen - … Risk of endometrial cancer after tamoxifen treatment

According to the University of Virginia School of Medicine, risk factors for endometrial cancers include: "being treated with tamoxifen for breast cancer, age 40 or over, personal history of breast cancer...."

Estronaut's assessment of Tamoxifen as a prophylactic drug play out similarly: "Taking Tamoxifen preventively simply trades one disease for another, one cause of death for another. The disease a woman trades for may be worse beyond the absolute numbers. Blood clots can cause immediate death and permanent disability. With breast cancer there is the possibility of cure or at more years of life."

So where does this translate into my situation?

First and foremost, given my lack of family history and health risks, I am in the less than 1% grouping already when it comes to my diagnosis of Invasive Lobular Carcinoma. So, again, the statistical significance of a more than 1% risk factor is not lost on me.

Second, I am in a "complex" subset grouping because of my age in developing ILC and due to the large size of my tumor (6.2 cm).

Third, although ILC can be slow to metastasize to the ovaries, my tumor markedly increased in size from diagnosis on July 8, 2009 to surgery on August 21, 2009. Ovarian cancer, while not in the classification of endometrial cancer, is in close enough physiological proximity that it gives me pause.

Lastly, thus far, I have yet to be presented with any tangible facts or reason to ingest Tamoxifen, or any other chemical for that matter, other than the size of my tumor...which was surgically removed with the rest of my left breast.

Consequently, as a woman diagnosed with ILC, if I were to ingest Tamoxifen for the standard 5 year plan, from where I sit I have a greater risk of developing uterine cancer as my blood payment for the "cure." The ICBC's solution to such a dilemma (actually told to me on two separate occasions -- with a straight-face no less) ... a prophylactic hysterectomy!

AHH!...now that is an enlightened market-based solution!


*ICBC, Inc. - Industrial Complex of Breast Cancer, Incorporated, a phrase coined by me to encompass the anomaly of the profit making industry that shrouds the study and treatment of breast cancer.

It's the Little Things...

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"Don't Sweat the Small Stuff"

"Stop and Smell the Flowers"


"It's the Simple Things in Life"
...each of these are absolutely correct (albeit trite) adages.


I have had my own epiphany. A variation on these age-old themes, if you will, since my diagnosis with Invasive Lobular Carcinoma. If I appear to wax in a rambling poetic manner (a la Jabberwocky), or a perpetrator of TMI, please indulge and forgive - it is not intentional...at least the poetic part.

For me, it truly has been the little things that I have noticed since dealing with my diagnosis of breast cancer.


I noticed that I did NOT know that there are two types of breast cancer: Lobular & Ductal.

I noticed that I did NOT know that there are subsets to Lobular & Ductal, i.e. Invasive and Non-Invasive.

I noticed that I felt strangely compelled to look up the definition of invasive ten times.

I noticed that not knowing these things was only the proverbial tip of the iceberg.

I noticed the irony that the lobules in the breast are the source of the most nutritious food you can provide your newborn child. I breast-fed three - the last one just 7 years ago.

I noticed the irony that breast feeding is supposed to be a prophylactic against breast cancer.

I noticed that when I was going through all of the diagnostic measures I was always the youngest in the waiting room. (I do acknowledge that being in Arizona means I reside in one of the retirement capitals of the nation.)

I noticed that each and every med-pro that I interrogated started each and every conversation with the unquestioning assumption that because I was young (so relative) that I was going to jump into the toxic-soup. As they stood outside the pot--in their protective gear, holding the ladle.

I noticed that even as an organic, rarely meat-eating, fruit, nut, veggie-consuming type I had no idea of the nutritional deficiencies that can contribute to breast cancer. E.g. a lack of Vitamin D.

I noticed the irony that I live in a climate that has triple-digit sunshine weather 9 months out of the year. Hell, we can export Vitamin D.

I noticed that the my medical issues over the years have been "stressed-related": migraines, miscarriages, pre-term labor, cancer ...THINK (?)

I noticed that I was immediately aware of and repulsed by the ridiculous amount of "pink-ribbon" merchandising that is thrust upon us by retailers - especially during my birthday month.

I then noticed that I had been a good little consumer of some of these pink trinkets (under the misconception that I was contributing to the CAUSE...I mean...CURE somehow??).

I noticed that the CAUSE is making millions for pharmaceutical companies, so there really is no true motivation for a CURE.

I noticed that for some reason I cannot don my pink-ribbon running cap...and forget the Race for the Cure this October...I am so not going to be there. First, and permanent, absence in 15 years.

That's when I noticed that I really am not a good card-carrying member of this exclusive, yet expansive, club of "breast cancer survivors."

I noticed that I am having a hard time coming to terms with the concept of "survivor."

I noticed that I might have subversive tendencies. (If W were in office I might be more concerned that my blog would be monitored for typing (and pinging) the word S-U-B-V-E-R-S-I-V-E.)

I noticed that people are surprised by my appearance. Not because that I appear sickly, its because I don't.

I noticed that my 8-year old has a hard time taking his eyes off the "d-bombs." Even though I have tried to conceal them in a jewelry gift-bag that I lace through a pirate belt I sport at my hips.

I noticed that I am obscenely fascinated by the red-stringy stuff that gets sucked out by, and stuck in, the "d-bombs" (OOOOO, I DID HEAR THE COLLECTIVE 'EWWWWW' CHIME FROM MY LAPTOP.)

I noticed that in the sometimes awkward conversations regarding my recent mastectomy and diagnosis people are really "punny" (pronounced: pun-nee).

I noticed how much better I felt in just having the surgical oncologist remove the operative tape that covered the stitches from my sentinel node biopsy. The underarm is really an "ouch" area.

I noticed what a thrill it was to find out that without the surgical tape my shower-mobility increased two-fold -- no more Bohemian pits. (THERE'S THAT 'EWWWW' AGAIN.)

I noticed that I am thrilled with the bizarre and sometimes painful feel of nerve-endings firing in my surgical area.

I noticed that most everyone you meet or speak with has had their life touched by cancer.

I noticed that for me (so far) a breast cancer diagnosis has not been my emotional "rock bottom." It dawned on me that dealing with my child's eating-disorder diagnosis years ago was way more emotionally, psychologically and physically draining.

I also noticed that at times I cannot bear to hear yet another cancer story.

I also noticed that I listen nonetheless, because I know that they are retold for all the right reasons: to demonstrate courage; because humans believe in the power of healing by sharing; and that connecting through communication is essential for us as a species -- even those of us in the subversive subset.