Pondering the Myths & Mathematics of Breast Cancer

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Statistics

About 155,00 women are living with metastatic breast cancer in the United States and this is projected to rise to 162,000 by 2011 according to Dr. William Gradishar, Director of Breast Oncology at the Feinberg School of Medicine at Northwestern University. source: Reach MD interview 2010

In developed countries, nearly 30 % of women with early stage breast cancer will eventually develop metastatic breast cancer. (O’Shaughnessy J. Extending Survival With Chemotherapy in Metastatic Breast Cancer The Oncologist.2005; 10 (suppl 3): 20-9)

In 2008, almost 49,000 Americans, including 1,990 men, were diagnosed with metastatic breast cancer. (American Cancer Society - 2008 Statistics)

98 percent of patients with breast cancer that has not spread beyond the breast live five years or more, while only 27 percent of patients whose cancer has spread to other organs survive five years.
(Komen website Jan 2010)

Median survival after diagnosis is three years. There has been no statistically significant improvement in the past twenty years. (American Society of Clinical Oncology [ASCO] Report - 2008)

Despite the decrease in cancer mortality rates since 1990, the actual number of Americans losing their battle with the disease has hovered around 40,000 each year since at least the year 2000.

(American Cancer Society statistics 2000 - 2008)

This translates to one death from metastatic breast cancer every 14 minutes.

The Myths...

Below are, reportedly, a few of the myths that still persist about metastatic breast cancer:

Myth: Research funding is well balanced for all stages of cancer

Reality: 90% of cancer deaths result from stage IV cancer, but only 2% of research funds are devoted to stage IV.

Myth: Metastatic breast cancer is rare

Reality: 30% of breast cancer patients progress to stage IV. Many more initially present with metastatic breast cancer.

Myth: Healthy lifestyles, timely screening and early detection prevent metastasis

Reality: Metastasis happens despite vigilance and precautions. Even stage I patients can and do metastasize.

Myth: Metastatic breast cancer is becoming a chronic disease. Fewer die every year

Reality: New treatments extend life for some, but survival remains elusive. Over 40,000 women and men have been dying annually since 1987.

Myth: Stage IV breast cancer patients are well supported by many groups

Reality: Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to stage IV.

And now for the good news...

Statistics can be frightening… and some statistics may not even be applicable to an individual and their specific type of cancer, or their particular response to treatment.

Many statistics represent an average number. Not everyone falls into that average.

Each of us is a statistic of ONE.

Check out: http://mbcnetwork.org/

Out of the Mouths of Babes

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Given the opportunity, children - at whatever age, are truly amazing beings. My kids excel at amazing. Last night, my 19 year old and I are sitting on her bed and I ask so what are we doing...? She lowers her chin, looks me in the eye, and flatly states: You know I am really pissed off at you!

Yeah, I know, why?

Why have you not told me your are sick again!??

...the upshot, SHE reads my blog. Who knew?

I knew I had better talk to my 21 year old. (Yeah! She is home for the weekend.) My baby has come a long way.

I had a fabulous talk with both my girls, and I learned a very important lesson, again. NEVER UNDERESTIMATE YOUR CHILDREN'S ABILITY TO HANDLE LIFE.

I love them so very much.

Time Out for a Tantrum

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I know that positive thinking is the mantra.
I know that the universe sets the kibosh on us when we ooze out negative energy into its folds.
I know that I am a grown up and should be past the tantrum stage.
But…sometimes…you…just…have…to…SCREAM! And, maybe even STOMP a foot!

In fact, I feel that I NEED to have a TANTRUM so that I can break out of the malaise that is suffocating me right now.

I have not told anyone in my family  - aside from Husband, about the new information and the choices it is now demanding.

WHY no kids? Well, my 21 year old is making us crazy with her homework and “senior” apprehensions. My usual affectionate 19 year old has become quite moody this summer, and I find that at times instead of the sensation of hugs I am wiping off disdain and sarcasm from my shoulders. My 10 year old discovered how irrelevant parental units are to his immediate universe, with his first stint at sleep-away camp. To be candid, I am afraid of how the kids are going to react. At this round, at 10 years old my son understands disease more. I am afraid that my 19 year old will distance herself more from me if she knows. (She withdrew quite a bit during round #1 in 2009.) My 21 year old, she is volatile with her emotions, and…well, her pragmatism sometimes has a bite to it.

WHY no grown siblings? My eldest sister’s birthday was this week, and she is exhausted with moving my niece into new college housing, travelling across country and satisfying every one's "need" to spend time with her. My middle sister – well, I have not been able to see her in two years and I only get her for 20 waking hours this weekend. I would rather hear about her finally being able to fulfill her dream of going back to grad school. My younger brother – I have not seen him in 7 years. I know nothing about his life these days. Hi bro, long time no see, btw… no, not cool. Besides, these siblings did not come into my life till I was 11 years old, and at times I am still feeling my around with them in defining my “role in the club.” I don't want to lay something so heavy into the mix when my membership card has yet to be laminated.

WHY no parents? Mom is very emotional and I end up reverting back to my caretaker role with her – a throw back from childhood when she and I were the sole family unit. And, today is her birthday. Happy 74^th birthday Mom…btw…nope, not going to happen.

Am I a coward? Probably. Am I being selfish? Absolutely. Having to accept everyone’s reactions, questions, demeanors – makes it all too overwhelming. I find it hard enough accepting or dealing with myself most days.

SCREAMING into the void of the virtual world? Now that is safe.

Which conjures up a random thought: If you write and nobody reads, have you actually said anything?

Running Out of Wiggle Room?

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METASTATIC INVASIVE LOBULAR CARCINOMA TO LYMPH NODE...lab report of July 21, 2011, courtesy of Pinnacle Pathology.


(post script: the all-caps was not me being dramatic. the report actually came typed in this font.)

(p.s.s.: onc turned the phrase, "we are back at ground zero" me: "you mean like deja vu all over again?" onc, "YES, exactly")

Expanding my vocabulary

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I learned a new word today: METS and it does not pertain to the team in NY.

Deja Vu Calling...

****** The requested blah blah blah biopsy is/was for a CT-Guided Biopsy. Apparently, it is difficult to biopsy axillary nodes with a CT-Guided assist. So, now it is a go for an ultrasound guided biopsy. T-minus 15 hours and counting.

Onc showed and earned some true colors. Onc was uncomfortable with the Confident Arrogant Prick's statements to me [refer back to blog entry dated July 8]. Yes, I did share CAP's comments with her, via her sentinels. I wanted to make sure there wasn't an alternative to "being a bleeder." Onc called me personally, after-hours...no less. She wanted to confirm CAP's comments and share her alarm with me. She also called the next day after she consulted with a radiologist on her preference list - who was equally appalled, reportedly.

Upshot, I am scheduled with Preferred Radiologist for the ultrasound guided biopsy. I will miss CAP's Nurse Christy, however. She was after all, a damn good Certified Breast Patient Navigator in Breast Imaging and Cancer Care! (No kidding, it said so on the wall certificates at the imaging center.)

It has crossed my mind to ask why I did not get referred to PR initially, but deja vu is a tough enough beast to contend with without me always asking the obvious.

It is NEVER lupus!

****** Nearly four days of running tests: CTs; Laparoscopy; Ultrasounds; Scopes; Contrast CTs. Nearly four days of unsuccessful prepping for other diagnostics...unsuccessful because we discover that I am allergic to iodine and ended up spending 18 hours vomiting. No small feat since I had not eaten anything solid (only IV fluids) since the morning of May 3.  Unsuccessful because intermittent with the vomiting, I had full body convulsions when the iodine hit my bloodstream that required a crash team intervention. Unsuccessful because the pain meds that they kept pumping into my body caused blinding rebound headaches.

While discussing the inclusive results, and what courses of action were next being considered, Scottsdale Shea Attending Doc states to my health care power of attorney (a/k/a/ husband) -- in the most serious of tones...well, we know it is not lupus.

I remember pulling the pillow away from my eyes. I blinked rapidly to clear my vision so I could take a good look at Attending Doc's punim. He was serious!

Deprivation, pain, toxic shock...a combo of all of the above...I start laughing hysterically. OF COURSE IT IS NOT LUPUS...IT NEVER IS!

PTSD - The Symptoms . . . Avoidance

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By Mayo Clinic staff


Post-traumatic stress disorder (PTSD) is a mental health condition that's triggered by a terrifying event. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.

Symptoms of PTSD fall into three main categories: . . .

. . . 2. Avoidance

•Emotional "numbing," or feeling as though you don't care about anything
•Feeling detached
•Being unable to remember important aspects of the trauma
•Having a lack of interest in normal activities
•Showing less of your moods
•Avoiding places, people, or thoughts that remind you of the event

On May 3, 2011 I was admitted into the hospital via the ER. The lower abdominal pain was becoming increasingly worse. I acquiesced to a transvaginal ultrasound because my new GYN (whom I met over a bottle of champagne at a school fundraiser) emphatically impressed upon me: "you can't go on like this...we have to do something."

The procedure inflamed an onslaught of unrelenting, double-me-over-pain. I was told (as distinguished from "asked") to go to the ER. An exploratory laparoscopy was needed...STAT... BTW, what are your current markers? That was May 3rd.

At 8 p.m. on May 7, I began refusing pain meds.

At 11 p.m. on May 7 I asked my night nurse to inform the gall bladder specialist that I would not be doing the procedure scheduled for the next morning.

At 6:30 a.m. on May 8 I text messaged my husband and asked if he would mind not going to the Navajo Nation that morning, and to come and pick me up.

At 7 a.m. on May 8 my day nurse asked what had changed that I was insisting on being discharged.

At 7:-08 a.m I informed her that:  I have been off pain meds long enough to think.

By 12:30 p.m. on May 8, 2011 the attending physician agreed with my decision to be discharged.

The letter

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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 biopsy...ah...now 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.

Sincerely....
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........................

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

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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.

The Pink Elephant

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Living with a chronic disease...be it cancer, leukemia, diabetes, MS...is 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.