Birthday Interlude

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Happy Birthday! I have made it to 48 years old! If, at 20 years of age, I thought I would be around this long...blah...blah...blah. And, what a strange and wild ride it has been! I am such a different person at 48 than I was at 20, and glad for that fact. In retrospect, I did not much like who I was at 20.

That person was insecure; and hence cared deeply about how others perceived her. She was deeply passionate; but did not know how to channel it - at least in a way that would not inflict self-harm. That person was independent; but did not know how to stand up for herself. That person cared deeply for the general "health" of the community at-large; but had not developed any skills to contribute toward that "health." That person was driven and dictated by her emotions; often times too willing to sacrifice who she might be to make someone else happy. Twenty-year old me was unsure of the potential and power that she held within - the power of defining herself.

In knowing all that, I find curious the realization I had this morning: I am ready to be done with feeling responsible for the feelings of others.

When I started on this journey back in July, I posed the question, in an August 19 post: what would be the "bigger challenge" for me now that I had been slapped with a cancer diagnosis? At that time I thought it was "allowing others to care for me." So far, I was wrong. It has not been that all. Don't get me wrong, THAT part has not been easy! But, it has not been the greatest challenge. The greatest challenge has been: not being overwhelmed by the strange responsibility for how people handle my diagnosis!

Some, but by no means all, seem to need me to reassure them that I am okay -- and quite often!? They need me to be "normal" while at the same time, change my daily patterns and be more accessible (so that I can assure them that I am okay???) For some reason I believe some have forgotten that having cancer has not given me a "get out jail free card" from the daily tasks and responsibilities of life (work, kids, work, husband, work, home, work, philanthropy, work...) And when I can't (i.e. change my schedule and accessibility) some are actually put out with me.

Is it inconsiderate of me not to be accessible to rehash my state of health and reassure them that I am o.k.? Today I do not think so.

I am very sure that it is not a conscious endeavor on some's part. But it is curious to me.

Since my diagnosis the greater challenge has been to divest myself from feeling responsible for making others feel comfortable with my having cancer. It is a big enough job doing that for myself!

And, today, I realized that I think I can do just that. Why? Because I am not 20 years old anymore! Yippeeeeeee!

Happy Birthday to middle-aged me!

My Living Will

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Tonight, my friend and I were sitting in the living room and I shared with her: "I never want to live in a vegetative state...dependent on some machine & fluids from a bottle. If that ever happens, just pull the plug!"

She got up. Unplugged my computer.
And threw out my wine!

She is such a bitch ...!

PSA - Eli Lilly is Scrambling

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Dear Tamera, Last week I invited you to send your personal note to Eli Lilly thanking them for the cancer they are creating with rBGH. Many people did just that, and it's having a huge impact. In response to our efforts, Eli Lilly's even begun covering its tracks, recently putting out an "independent panelist report" purporting the "safety" of rBGH - we have to keep the pressure on! If it got by you last week, it's not too late now to get a card sent in your name to Eli Lilly. Just $10 bucks to BCA, and we'll send that card in your name. If you sent a postcard to Eli Lilly last week, great and thank you. Click here to ask your friends and family to join you in sending a card to Eli Lilly. Not only do we have a shot at stopping Eli Lilly from milking cancer… but your dollars will be used to keep us bad girls of breast cancer working hard. With an outfit like ours, every single dollar counts. All the best, and thanks!

A Little Further Down the Rabbit Hole (or am I now tripping down the Yellow Brick Road???): PART I

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After my last free fall with the radiation onc (refer back to September 24, 2009) I decided to follow her advice. I went forward in pursuit of the 3rd and 4th consults. Heck, why not? I think I am turning into a med-pro junkie. My tete-a-tetes with the med pros have opened my eyes in so many ways that I just can't get enough of them. I just need to know what they will say and do (or not do) next.

So off I went.

The first adventure began with trying to get the appointment with the first recommended 3rd medical onc. Radio onc encouraged me to meet with the famous Dr. Jeffrey Isaacs, because "he has a brilliant mind." I recalled the name - he had been referred to me by a medical malpractice attorney friend. I had actually called his office during my initial investigations, and was told that he would not see new patients prior to surgery. Consequently, I had drawn a line through his name back in July.

Radio onc warned me about Isaacs' front office staff's personality deficits. (Yes, I begin recalling a prior surly encounter.) She advised me to "smile and nod" because meeting with him was so worth the frustration..."He's got a brilliant mind for tough cases!" And she assured me that her personal nurse would help get me an appointment. Yeah right! I don't think I had ever seen a 50-something, salt n' peppered lady roll her eyes until then.

To that "instruction" radio onc's personal nurse sighed heavily and said, "you call first and see what you can do, if you can't get an appointment let me know." Thanks personal nurse, Beverly.

But, I was intrigued (not by the eye-rolling, mind you). So I called Dr. Isaacs office, again. . . .

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"Have you consulted with, been seen by, or started treatment with any other oncologist?"

Umm, I tried to consult with Dr. Isaacs previously, but I could not get an appointment pre-surgery.
"Have you consulted with, been seen by, or started treatment with any other oncologist?"

Umm, I have been meeting with another oncologist, but I am not pursuing treatment with him. My radiation onc...[insert name]...highly encouraged me to discuss my case with Dr. Isaacs.

"Dr. Isaacs will not meet with anyone who has consulted with or has been seen by any other oncologist."

But, radio onc is the one who referred me to Dr. Isaacs. You see, I have this high-risk complex situation.

"Honey (oh you so did not just say that?), you and everyone else. Dr. Issacs is a very busy and sought after specialist. He only sees new patients that have not consulted with, been seen by or started treatment with any other oncologist. He is selective." (Who anointed this guy the "Great Oz"?)

Oh, then why would radio onc insist I meet with him?

HUGE SIGH...SILENCE..."Ask radio onc to fax over your file. Dr. Isaacs will review it and will determine whether or not he will meet with you."

TIGHTLY GRIPPING THE COFFEE COUNTER...Thank you, may I have the fax number?

"Radio onc's office will have it. The records must come from her office. Someone will call you in a couple of days with Dr. Isaac's decision." ~CLICK~

Beverly? T.C., I just had an interesting conversation with Dr. Isaac's office...blah...blah...blah

"So, you are asking me to fax over your records?"

At the least. Do you think you can call, as radio onc offered previously? See if you have better luck?

"They asked that the records be faxed?"

Yes...
"So you are asking me to fax the records over?"

Umm, yes, but would you also call?

"They asked for the records, I can fax the records if that is what you are asking of me."

MY KNUCKLES HAVE LOST ALL BLOOD FLOW AT THIS POINT.... If that is all you will do to assist me, then yes, Beverly, do fax the records.

"I will fax them shortly." ~CLICK~

If I had not been in a public coffee house I think I would have had my second cry since this odyssey began.

Dr. Isaacs' office did call -- four hours later. The Great Oz deigned to offer me an audience. Yipee Skipee!

"Make sure you bring a CD of your PetScan. He will look at films too, but prefers a CD."

Of course he does . . .

. . . .to be continued

PSA - Send a "Thank You for the Cancer" Card to Eli Lilly

****** Eli Lilly is making money by increasing our risk of breast cancer, and then treating us once we develop the disease. It's unbelievable, unconscionable, and outrageous - and we're calling them out.

Here's how: We're sending them a thank you card.

What? No, we're not crazy! We need to get their attention and keep it, and the only way to do it is to be as outrageous as they are. So, we're sending them as many "Thanks for the cancer" cards as we possibly can. Will you send one too? It looks like this:

All you need to do to participate is make a $10 donation to Breast Cancer Action, and we'll send a card in your name to the pharmaceutical giant thanking them for the cancer they're causing with rBGH. You'll be letting Eli Lilly know not only that you're onto them - but that, by supporting us, you're fighting them too.

And that $10? Trust me. It goes a long way around here. Unlike most breast cancer organizations, we don't take money from the pharmaceutical industry, so we can use all the support we can get. Thank you!

Sincerely,

P.S. Learn more about the Milking Cancer campaign!

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

Awarenes

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October is Breast Cancer Awareness Month and the Pink Ribbons are flying!

What does that really mean ... AWARENESS???????

Before I was diagnosed with Invasive Lobular Carcinoma, I was aware of the prevalence of breast cancer. I knew it was a disease that struck mostly post menopausal women. I was aware that women who have family histories; who smoked; who took oral contraceptives for prolonged periods of time were more likely to be stricken with breast cancer. I was aware of mammograms and lumps and lumpectomies and mastectomies. I was aware of the existence of radiation and chemotherapy treatments.

I was aware of our local news station and its "Buddy Check 12" campaign. I was aware of the Pink Ribbon campaigns. I was aware that every October there was a hub-bub about the Susan B. Komen Race for the Cure. I was so aware that for the last 15 years I ran the Race for the Cure; ironically shaving off up to 8 minutes in my pace time each year. (As it turns out, I guess I wasn't running fast enough!!!!)

It wasn't until I was blind-sided with a diagnosis of breast cancer this summer that I became aware of the breadth of my ignorance. There was, and still is, so much that I did not know about the disease and its treatment. And, none of the information I received over the last 15 years of my "pink" involvement ever even hinted at the depths of my naivete.

For example . . .

I did not know there were myriad of causes of breast cancer - the majority being environmental
I did not know that women without genetic predispositions could get breast cancer
I did not know that women who did not live a high-risk lifestyle could develop breast cancer
I did not know that there were subsets to breast cancer (ductal, lobular, inflammatory and Paget's Disease)
I did not know that as a pre-menopausal woman in good health I could develop breast cancer
I did not know about sentinel node biopsies
I did not know about drainage tubes ("d-bombs")
I did not know about tram flaps; or that as a 100+/- lb person I am not a candidate for one (And thank the Creator for that one - not a procedure I would have wanted!)
I did not know about the long term effects of chemotherapy
I did not know about Adriamycin (aka "Red Devil")
I did not know about Tamoxifen (or that outside of the U.S. it is listed as a cancer-causing carcinogen)
I did not know about Herceptin and Aromatase
I did not know that the medical community treated pre-menopausal women differently than post menopausal women
I did not know about Oncotype DX and MammaPrint tests for chemo efficacy
I did not know about how a cancer is "staged"
I did not know that mammograms are not a reliable or effective way to early-detect Invasive Lobular Carcinoma
I did not know that a Vitamin D deficiency can be a contributing cause in the development of breast cancer
I did not know how key Vitamin C is in preventing the occurrence and recurrence of breast cancer
I did not know that a build up estrogen in the body is toxic.
I did not know that the only way the body effectively disposes of unneeded estrogen is through daily waste elimination
I did not know about E-cadherin and protein tests and saliva tests and hormonal balancing
I did not know about the vast discrepancies in how breast cancer is approached and treated in the U.S. as compared to Europe - and that stateside we are not on the higher road

and so it goes on, and on, and on . . . . AND

I did not know what an insidious and pervasive industry that breast cancer has generated in the U.S.

I did not know that the med-pros really do not have a "CURE" for breast cancer, but rather a "PROTOCOL" - that they are vociferous in the application of their established protocol; that the protocol has not changed much in 50 years; and that despite the protocol women are still dying - at times as a result of the protocol.

I did not know that even though 100s of millions are raised for research, awareness, marketing and merchandising that we are still no closer to a cure.

I did not know that some of the pharmaceutical companies that produce & distribute cancer treatment drugs consciously include cancer-causing carcinogens in the household products and foods we consume.


I did not know that I would need to become my own "lay expert" in order to earn a voice in the discussion regarding my own health and treatment.

October is Breast Cancer Awareness Month. And, I am a little more aware this October of 2009 than I have been in all my previous years. I am also excruciatingly aware that my new found knowledge and the continuing pursuit of knowledge has nothing to do with the flying of little Pink Ribbons!

Attack of the Prosthetic or "What the Docs Didn't Tell Me...Again"

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When you go through the mastectomy and reconstructive process the med-pros, if you asked them, would genuinely tell you that they diligently inform patients of the potential risks, healing times, the care of the wound and drainage tubes (a.k.a. d-bombs for my few but loyal blog followers), medications, numbness and expected down time. What they don't inform of is how it will all feel! And I am not talking about the emotional adjustment of having your body look like Igor took knitting lessons from the Monster!

What I am speaking about are the bizarre sensations. The queer aches. The very wrong pains.

My surgeons did not truly share what the daily oddities would be - despite providing me with a personalized 12-page booklet. They didn't really prepare me for the texture of the of the training boo-bee. That it would feel like an unripened grapefruit trying endlessly to dislodge itself, a la Sigourney Weaver and Alien.

They did not share the fascinating little tidbit that if any seam or edge ... of any kind or material ... presses against the iron grapefruit for more than 2 minutes a deep impression is left. Very useful if you are imprinting keys. But a bit disconcerting if you are trying to grow (?) a new breast.

I do admit that they told me the breast area was going to be numb. What they didn't share was that it was the kind of numb sensation you feel when your foot falls asleep -- that heavy, prickly, tingling feeling. In this situation, however, it n-e-v-e-r goes away no matter how much you stomp.

Nor did they even whisper about what I fondly refer to as the "spike attack." Think rolling-pin that is actually more medieval mace. If I shift my arm or shoulder too quickly, or instinctively reach to catch something, the iron grapefruit that was planted in my left chest wall jerkily rolls its protestations against every nerve, bone and fiber it can reach.

I will give Med-Pros credit, they do encourage "creativity" when trying to camouflage the lopsidedness of "the ladies." Even being complicitous in the creative process by prescribing varied padded objects, courtesy of the retail mastectomy fashionistas. And let me tell you, we are not talking tissue or gym-sock stuffings Sandra Dee...!

Which leads me to mention that I was not forewarned that the surgical scar that runs horizontally from pit to sternum screams in burning agony if the compression bra is pulled too tight over it. An unavoidable and unfortunate situation if you are trying to artificially balance the "ski-jump" that passes for a bustline. And this fire does not extinguish.

For now, I have learned to embrace the ski-jump and wear patterned and textured tops. Though, I must admit I am perversely yearning for the inevitable awkward scene in the grocery store when a little kid points and shouts loudly: "MOMMY! that lady has a hump on her front!"