Tuesday, October 18, 2011

Jumping on the Pink Bandwagon

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Maybe I have been too judgmental. "Awareness" remains a critical need during Pinktober, and throughout the year. Case in point:

I walk into our neighborhood Safeway store last evening with my 10 year old son. As I am in the check out line, the 10 year old spies a large handwritten sign that announces: REGISTER NOW TO WIN AN iPAD2!

Mom, can I go check it out?

He goes over to the table with the display. Yes, it is to benefit breast cancer, but it does not say which pinkindustry is sponsoring the drawing, the cost of tickets, or which non-profit is going to reap the proceeds. And, there are no entry forms

The manager eyes my son investigating the table, and then me. He walks over to me and informs, enthusiastically, that: yes my son may enter to win, would I like one ticket for $10 or 5 tickets for $50 (retail price break).

I ask who is sponsoring: Safeway (obvious)

I ask to whom is it benefiting: Breast Cancer (okay, obvious again...he must think I am a moron at this point)

I am still gnawing on the price break.

I rephrase. To which organization will Safeway be ~ donating (?) the funds: the funds will stay locally (what does that mean)

Deep breath...he is management after all.

I probe further. Which local organization will Safeway be giving the money raised from the ticket sales for the iPad2. Safeway  (WT....???)

Oh, Safeway has its own breast cancer organization: No, um, some money will go to Tucson (okay, I am in for a pound now)

Which organization in Tucson: Oh, there a lot of them in Tucson that do good work for breast cancer

And those would be: The large medical ones (price break goes to priceless)

I tell him that I think I am going to pass on purchasing the tickets. He still tries one last shot at inducing me to buy: Oh, and some of the money is going to Susan G. Komen, they do a lot in researching breast cancer awareness! That is a great cause.

Oh yes, yes it is!

Sunday, October 16, 2011

Random Thought Sunday (10/16/2011)

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We need another label. These just don't work for me.

Yes, technically I am a patient, since I am undergoing treatment for a chronic disease. But the word "patient" conjures up antiseptic hospital rooms and off-the rack backless gowns. This just does not speak to me.

The definitions of survivor make my skin crawl. ...remaining alive after...others have died. True, to some extent, for some.    ...copes well with difficulties in life. Coping is relative. Coping well is purely subjective. Ironically, it is the public expectation that persons with cancer do nothing but cope well. No one likes a poorly or misbehaved person dealing with cancer. They don't make good poster icons for fundraisers. I can't fit myself into the paradigm of survivor.

Victim resonates: tricked, duped, offered up as a sacrifice to the pink industry. But victimization also requires a certain acquiescence. I will not go down that path.

We need another label, or better yet ... no label at all.

 pa·tient
 noun     /pey-shuh nt]

                1. A person who is under medical care or treatment.
              
              2. A person or thing that undergoes some action.

              3. Archaic ~  A sufferer or victim.
sur·vi·vor
noun /sərˈvīvər/ 
  1. A person who survives, esp. a person remaining alive after an event in which others have died

  2. The remainder of a group of people or things
  3. A person who copes well with difficulties in their life
  4. A joint tenant who has the right to the whole estate on the other's death

vic·tim
noun /ˈviktəm/ 

  1. A person harmed, injured, or killed as a result of a crime, accident, or other event or action
    • A person who is tricked or duped
    • A living creature killed as a religious sacrifice

    Thursday, October 13, 2011

    "Peaking" Behind the Pink Curtain

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    Today, October 13, I just recently found out, is METASTATIC BREAST CANCER AWARENESS DAY. Who knew? And, more importantly, why didn't we know?

    The entire month of October is "Breast Cancer Awareness" month, and the killer form of breast cancer gets only one day out of 31. 1% of the attention. Unfortunately, that is the reality and history of breast cancer research and awareness.

    No one wants to talk about the actual death rates behind the pink curtain.

    It boggles my mind that as the runners race for the cure; walkers do their 3-day walk; drinkers down their Pink Hard Lemonade; fashionistas don their pink pins, bracelets, baseball caps, t-shirts; foodies eat their Kentucky Fried [pink packaged] Chicken; and Susan G. Komen markets their carcinogenic PROMISE ME perfume, that only a small percentage of concerned, well-meaning people ask the question: where does my contributing money really go, and how is it spent?

    Susan G. Komen only spent approximately 20% of their raised funds on (early stage) research in 2010, despite raising over $310 million (although $22 million went to salaries).

    And... Despite the platitudes to the contrary, it certainly does not go toward reducing...eliminating (?)... the deaths from metastatic breast cancer. Despite the moniker that, early detection saves lives...(the falacy of which is becoming more apparent)  the $$$ do not go toward solving the medical mystery of what causes breast cancer, and what then causes it to metastasize? And only 2% goes toward research on that form of breast cancer that causes the death of 40,000 women each year in the U.S.

    Because of these life-impacting inequities, METAvivor, a non-profit organization devoted solely to raising funds for metastatic breast cancer research, as well as awareness of this deadly disease, was developed and conceived. Below is a repost of an OpEd written by the president of METAvivor, C.J. (Dian) M. Corneliussen-James, this past summer. I strongly encourage you to read this enlightening OpEd, and then go and check out METAvivor.org. 

    ~ TC

    Opinion: 30 percent for 30 percent

    Opinion: 30 percent for 30 percentBy C.J. (Dian) M. Corneliussen-James

    The most devastating and feared breast cancer is metastatic (stage IV) breast cancer. This occurs when breast cancer spreads to distant, non-adjacent parts of the body. It strikes 30 percent of breast cancer patients and is fatal, taking lives on average within two to four years of diagnosis.

    Clearly, ending death from metastatic breast cancer (MBC) is of critical importance not only to those living with it, but also to anyone who has had, or may at some point develop breast cancer.

    Unfortunately, research for MBC is vastly underfunded. Indeed, research for all metastasized cancers is collectively funded at only 2 percent, and MBC is a subset of that group.(A recent quote of 5 percent in regard to metastatic cancer research came from averaging U.S., Canadian and European research portfolios. All statistics and information in this paper pertain solely to the U.S.)

    So where does most of the money go? It goes predominantly into prevention and early detection. If one looks at the funding distribution pie charts of various organizations, these two categories are inevitably included. What is not immediately apparent is that much of the funding designated for other categories, such as biology and etiology, is also spent on issues pertaining to prevention and early detection. By comparison, MBC research is so poorly funded that it rarely even appears on a pie chart.

    The preoccupation with prevention and early detection has continued since at least 1998 when the National Cancer Institute set these two issues as the national breast cancer focus. Reaffirmed in 2004, the policy has not changed — neither has the fact that each year roughly 195,000 Americans continue to be diagnosed with breast cancer, that 30 percent of these patients continue to metastasize, and that 41,000 continue to die each year.

    While one cannot dispute that prevention and early detection are worthy causes, one can indeed question the inequity in the distribution of funds. Further, one can certainly ask how long we plan to direct the preponderance of research in this same direction, especially in light of what has, or better said has not been achieved.

    Why are other organizations not funding stage IV research? Here are my thoughts:

    1. Image and Turn-Around: Grant-givers prefer projects of short duration with a relative certainty of success. That is good for the image and encourages future donations. Mets research is enormously complex and the best chances for significant improvement tend to be out of the box ideas. Such research takes longer to accomplish and the predictability of success is shaky.

    2. They are Getting Away with It. Cancer organizations have used token advances to claim they are making great strides forward with metastatic cancer. The advances they speak of are rare and normally involve extending life at best for several weeks or months, but this is not made public. Even those who know the truth keep giving, including some of those dying of the disease. They are caught up by the glamour, the big names and the enticing events. There is no need to take the difficult road.

    3. Money .. Money .. Money. Metastatic cancer research is enormously expensive, especially if sufficient models (animal or otherwise), which are critical to much of the research, are to be developed.  [This block quote was copied from an earlier post by CJ and  inserted here by the blogger, TC...exploiting her creative license]

    Quite a few scientists say privately that prevention in the foreseeable future is unrealistic because among other things, we do not even know what causes breast cancer and thus have nothing specific against which to target our efforts. Likewise, early detection has failed to effectively reduce death because some patients have metastatic cells prior to developing a detectable breast cancer. And thus even stage 0 patients can and do metastasize.

    Research for other aspects of breast cancer is certainly being done, but on a diminishing scale. At the bottom of the scale is MBC — the only breast cancer that kills.

    In response to a small but nevertheless persistent outcry that not nearly enough is being done, we have recently seen one or two promises to address the issue of MBC. Yet in reading the fine print we see that what is being discussed is research to prevent breast cancer from metastasizing — not research focused on interceding after the cancer has spread.

    Is there a difference? You bet. Although any cancer research can at times yield new information relevant to another area of research, significant progress usually occurs only when research is directly focused on the problem at hand.

    Metastatic cancer exists in a different realm than non-metastatic cancer. Thus MBC is far more apt to benefit from research undertaken for another metastatic cancer than it is from research involving non-metastatic breast cancer. Unfortunately, since the entire field of metastatic cancer is funded at only 2 percent, there is limited related research to draw upon.

    So just what is the reluctance to sufficiently fund metastatic cancer research?

    Historically, metastatic cancer has been considered too complex an issue to tackle with any reasonable expectation of success. Yet times, and the state of science have changed.

    According to Danny R. Welch, Ph.D., renowned career metastasis researcher and past president of the Metastasis Research Society, “Within 10 years, suffering from and potentially death from metastatic breast cancer could be reduced significantly if the research were fully funded.” There are now many dedicated career metastasis researchers, who have the education, the experience, the skills. the ideas, the proposals and the scientific insights to make a difference. What they lack is the funding.

    I could make the argument that MBC research, and not prevention and early detection, should be the premier focus for breast cancer research. Clearly those with MBC have the most urgent need for research because it is their lives, and only their lives, that are imminently at risk. Equally important is the fact that ending death from MBC is the only means to simultaneously bring peace of mind and the promise of longevity not only to all stages of breast cancer patients but also to a general public that worries about being diagnosed. By contrast, prevention and early detection are relevant only to the undiagnosed. Once a person becomes a patient, these issues are of no further value.

    Yes, I could make my argument, but I am unlikely to win. Thus instead, I advocate for what I think is both fair and achievable – 30 percent for 30 percent. Thirty percent of all breast cancer patients metastasize and die. Thus 30 percent of all breast cancer research funds should be dedicated to MBC research — exclusive of research to prevent metastasis, which pertains to the non-metastatic patient and thus belongs in the domain of non-metastatic research.

    If we could achieve 30 percent for 30 percent, we would save countless lives.



     

    Wednesday, October 12, 2011

    13 Facts You Should Be Aware Of During Breast Cancer Awareness Month

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    "While there is no cure for metastatic breast cancer, some individuals are able to live longer with the disease. However, metastatic breast cancer remains a clinical challenge in the oncology community. October 13 places emphasis on the disease stressing the need for new, targeted treatments that will help prolong life." - William Gradishar, MD, Northwestern University Feinberg School of Medicine


    13 Facts Everyone Should Know about Metastatic Breast Cancer ~ reprinted from the Metastatic Breast Cancer Network. mbcn.org

    1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.

    2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain. [ILC (invasive lobular carcinoma) is atypical in where it will metastasize first, e.g., lymphatic system, peritoneum, uterus]

    3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

    4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)

    5. About 6% to 10% of people are Stage IV from their initial diagnosis.

    6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person’s original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.

    7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.

    8. Young people DO get metastatic breast cancer.

    X-ray of a woman with metastatic breast cancer
     in her bones
    9. There are many different kinds of metastatic breast cancer.

    10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.

    11. Metastatic breast cancer isn’t an automatic death sentence. Although most people will ultimately die of
    their disease, some can live long and productive lives.

    12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone’s situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%. (Ahhh...this is where radiation onc got her figures when she played out for me her interpretation of the grim reaper. She gave me the cookie-cutter stats!)

    13. October 13 is National Metastatic Breast Cancer Awareness Day. To learn more about it as well as resources specifically for people with metastatic breast cancer see www. mbcn.org.

    Tuesday, October 11, 2011

    Guessing at the Causes & Effects...the "What ifs" when you live with the Big C

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    Pain shoots through my armpit (axillary if you are medically squeamish) down the inside of my arm.

    I instinctively hold the area.

    The pressure makes it worse.

    Pain radiates across my abdomen.

    Catching my breath.

    I take deep yoga breaths trying to calm my inner self ~ both physically and emotionally.

    I rise from the chair and my spine crunches and compresses.

    I walk for the first few minutes gripping my elbows behind my back (thank G-d for good muscle memory & flexibility from bygone dance and martial arts).

    I am so damn clumsy! Either I am emitting a negative polarity to solid objects, or going through another adolescent growth spurt. (Oops...5-0 bday looming...I mean second adolescence.)

    The newest blood work came back, concerning low white blood cell and red blood cell counts,even after 6 weeks of being on supplements for both. (On a new vegan prenatal vitamin with 45 mg of iron picolinate...NO...I am not preggers I just covet their multi vitamins.)

    My body is fighting an invader so my white blood cell count should be on terminator mode (think Nintendo Brawl fully loaded...yes, I have a 10 year old).

    Is it apoptosis** performing seppuku with the cancer cells in my...yes say the icky word with me...armpit?

    Is it apoptosis** inducing the controlled suicide of suspected infiltrating cancer cells in my peritoneum?

    Is the high dose of Vitamin C I dread taking into my veins weekly ~ dread because of the pressing frontal headache, spaciness, fatigue and violent nausea that accompanies the cold drip into my sore veins ~ finally becoming my personal avenger?

    Is it because all those years of pirouettes, leaps and grande battements taking its toll?

    Is it because all those years of full contact sparring (sweetened with too many concussions and broken ribs) my body is rebelling?

    Is it something as simple and treatable as anemia repressing my body from donning its crusader role?

    The problem with cancer is the "what ifs"? Before you have, or least before you know you have cancer, you assign your symptoms to mundane causes and shake it off.

    Now that the disease has infiltrated my body, my mind becomes hypervigilent with considering the "what ifs."

    The mundane becomes the secondary thought, and shaking it off becomes a learned and concerted effort.

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    italicized words = dripping sarcasm

    **Apoptosis, or programmed cell death, is a normal component of the development and health of multicellular organisms. Cells die in response to a variety of stimuli and during apoptosis they do so in a controlled, regulated fashion. This makes apoptosis distinct from another form of cell death called necrosis in which uncontrolled cell death leads to lysis of cells, inflammatory responses and, potentially, to serious health problems. Apoptosis, by contrast, is a process in which cells play an active role in their own death ~ which is why apoptosis is often referred to as cell suicide.