Showing posts with label breast cancer survival. Show all posts
Showing posts with label breast cancer survival. Show all posts

Wednesday, September 21, 2011

Another "Lens" in Which to View the Dreaded "PINKTOBERFEST"

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By: Dawn

Maybe I should make this entry pink, pink lettering on a pink background, totally unreadable, just a sea of pink. Why would I want to put all this effort into writing a blog entry just to have it unreadable? Why do people keep making breast cancer seem like a happy, fun, feminine, cool, trendy disease?

The facts aren’t that happy. Sure, it’s not the death sentence other forms of cancer are. Let’s face it, some cancers are quick, brutal, and rapidly deadly. For those cancers, the question isn’t “if” but “when.” I have a friend who has a specific type of cancer that has a 0% five year survival rate. ZERO percent. I don’t know what the one year survival rate is, but it’s not great. Another of my friends was told she’d live 12-18 months. She fought hard. She battled mightily. She lasted 15 months if I count correctly. Compared to those types of cancer, sure, breast cancer rocks.

But do all of those people who are so happily pink, festooned with ribbons and feather boas and running and dancing and doing all those fun things for a cure really aware of how great breast cancer is? How survivable it is? How much progress has been made?

For starters, when we talk about “surviving” with breast cancer, we speak of surviving five years. The term is “the five year survival rate.”

Pardon me for not being too chipper about that. I’m coming up on my second cancerversary.

If a woman happens to be Hispanic, which I am not, she’s more likely than other women to get aggressive breast cancers and die from breast cancer . Were you aware of that?

I’ve heard people, endurers as well as the non-effected, say, “At least the tumor is estrogen (or progesterone) receptive. There’s a pill for that.” Yes, indeed there is. And those tumors tend to grow more slowly. See how aware we all are? Yet, not 100% of all those hormone receptive tumors respond to medication . In fact, for people who are progesterone positive, under 20% respond to hormone therapy. Oops! Wasn’t aware of that fact.

Many people are also aware that another type of cancer, the type I had, is particularly aggressive. It’s called HER-2+ breast cancer. But joy of joys! Herceptin cures it! And if it does come back, “you just do herceptin treatments for the rest of your life.” Well, that’s probably correct. As long as the herceptin continues to work. Of course, Tykerb is also an option. But sometimes that doesn’t work, either. And, the woman dies.

We are also all aware that breast cancer is curable. And that’s true. To an extent. Most women don’t die from the cancer in their breasts. They die from the cancer that has spread to other places, their brains, their livers, their lungs, their bones. If the cancer just stayed in our breasts, we’d be fine. Cut it out, chop ‘em off, radiate ‘em. End of story. However, that’s not how breast cancer works. There’s never, ever a guarantee that even the smallest spot of cancer hasn’t sent cells out into the blood stream or lymph system, so many (most) women have cells, lurking, waiting to come to life. Yippee.

Many of us are aware that there are things we can do to “prevent” breast cancer. No, not really. Other than cutting off breast buds at birth, there really isn’t anything that “prevents” breast cancer. There certainly are ways women can reduce their risks, their life time, risks of breast cancer. These include staying within five pounds of a healthy teenage weight, exercising an hour a day, eating a mostly plant-based diet, breast feeding, having babies earlier rather than later. These are not “preventative” as we’d like to think. Breastfeeding is not the same as wearing a condom to prevent pregnancy. A condom is, what, 99% reliable although users of them tend to be less so? Breastfeeding your baby for a year, two years, a total of 13 years spread over several children, does nothing more than reduce one person’s life time risk of getting breast cancer. It’s not the same as, say, not smoking to prevent lung cancer. Being thin, fit, young, and nursing does not mean one doesn’t have to still screen and hope for the best. Many women aren’t aware of that. When I was diagnosed, some ardent breast feeding person who was touting breastfeeding as “preventative” had the gall to ask me if I had a family history, as if…whatever. She said she was counting on nursing to “protect” her. Idiot. Simple stupidity. Further proof that the USA sucks at math and mathematical reasoning.

Let’s talk about long term survival. We are aware that a lot of women survive for years. Women are typically over 60 when they are diagnosed. Let’s face it, when you are in your late 60s or your 70s or older, “long term” takes on a whole different meaning than when you are in your 20s or 30s or 40s.

And none of this takes into account the negative effects of cancer treatment on a person’s general health. For starters, cancer treatment can lead to new cancers. We are all aware that radiation can cause cancer. Cancer treatment often includes radiation. There’s a double-edged sword. Better yet, there’s the chance that treatment will cause heart, liver, or kidney damage. The Tykerb I take now is black box labeled for liver damage, “sometimes fatal.” Nothing like killing yourself to stay alive.

Herceptin (and Tykerb) can also cause heart damage. My radiation treatments also got a part of my heart. Isn’t that swell? Oh, yes, my lung, too, was radiated. Heart, liver, and lungs! Oh, my!

There are also lesser, yet also life altering, long term effects, such as a change or decrease in the ability to taste, chronic fatigue, mental fuzziness to the point that some people are unable to continue in their careers, loss of mobility, nerve damage especially in the feet and hands, chronic constipation or the opposite, chronic diarrhea.

I don’t think most people are aware of this. That to “survive” does not mean to “get better” and that life isn’t always pink and rosy are not parts of awareness.

Yet, we are aware that there’s a “cure” out there. In fact, when it comes to breast cancer and pink, “awareness” seems to be synonymous with “cure.” However, one would think that if an organization were really, truly concerned about a “cure” their money and focus would go to what…awareness/education? or research? prevention or parties? I’d like my money to go to research and prevention. Check out these charts to see where it really goes.

Just so you are aware.

~Desiderata

Thursday, July 7, 2011

Perception...

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"You are really brave. A hero"...whhaaat? Why do people feel compelled to flatter a person dealing with cancer with such ridiculous statements of admiration. Why does living with a chronic disease change the perception people have of me?



A "hero" by what measure? "Bravery" measured by what standard? I am not the spokesperson for women with breast cancer, but I think I am on safe ground saying that "bravery" and "heroism" are not the qualities we feel oozing from our emotional or psychological pores.

I am a person with a chronic disease. I chose not to curl up into a fetal position and succumb to the disease. I truly have not encountered many people who have chosen the latter. Does that make me (or them)"brave"? No, it makes us human. The will to live is not being extraordinarily human, brave or heroic. The will to live is a natural instinct. The necessities of life are a responsibility.

How we live as an adult in the present 21st century is defined by our choices and responsibilities.  I  choose to get up every morning, and I must go to work everyday. I choose to have a family and willingly undertake the daily responsibility of caring for them. I choose to continue in my volunteer work. I must pay my mortgage; go grocery shopping; clean my house and do laundry. I even choose to try and through in a little leisure time here and there. I also get pissed off at my kids and husband...and at the check out clerk, and the lawn guy...etc. In short, I am living an ordinary life. This is not heroism. My days are no different than 100 million other women...and we all have minor inconveniences we deal with daily.

Cancer does not make me "special" or elevate me in any way. It makes me human. And, as far as I can gauge, I was human before the diagnosis.

Wednesday, July 6, 2011

The Purgatory of Cancer

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****** Being a survivor is a life sentence. There is no beginning, nor end, per se other than the inevitable we all face.


It is a matter of waiting...waiting...waiting. These are prophetic words articulated by so many of the blogs that I follow off the Being Cancer blog-os-phere network. What all these individuals dealing with caner seem to have in common is that they all opted in for the cut/slash/ and or burn protocol after being told those karma-changing words... "it's cancer.". Even my anti - pink fellow marauder, Anne, opened up her veins to the "juice." I am not making any judgment here. This is purely observation and the musings that arise therefrom.

I don't think of myself as a survivor. It seems that moniker more aptly belongs to those who have come through the horrific battleground of adjuvant treatment. Does this make me a coward? A deserter? Did I burn my draft card with my post-operative bra? Since I am not a survivor, then what I am? I experience the same immutable waiting game...waiting...waiting...for the what next. I have the same objective ... out live the odds. I crave to go back to "normalcy," i.e. pre-cancer existence where tomorrows had a boundless meaning; when day to day life did not feel internally controlled by the tolling of a time bomb; when I felt that I could outrun my own mortality by wearing my seat belt, avoiding semis on the interstate, and keeping the speedometer under 110 mph. Instead, I am neither survivor nor casualty. I am in cancer purgatory. Dante could not have conceived of a more stifling environ. Which would be fine, if I wasn't Jewish.

Wednesday, January 19, 2011

"At some point you have to accept defeat..."

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****** A dear friend from life-times past made the comment : "At some point you have to accept defeat...." These words were said a couple of months ago; and certainly not in the context of my life with breast cancer. These words, however, have gnawed at me. I find that I bristle at the implications. I find, that I cannot help but think of the myriad of situations where someone might say them to me. And this thinking started me to wonder about the concept of "defeat" and "acceptance" in all facets of my life.

Definition of DEFEAT (n.)

1: frustration by nullification or by prevention of success
2: obsolete : destruction
3 a : an overthrow in battle / b : the loss of a contest

I just can't imagine accepting nullification, obsolescence, destruction or even loss. 

To ACCEPT would require me to:

... to take or receive with approval or favor; or

... to agree or consent to; accede to; or

... to accommodate or reconcile oneself to; or

... to regard as true or sound; believe; or

... to regard as normal, suitable, or usual.

I cannot bend to the concept of combining accept with defeat. Not in any situation. It is not that I am unreasonably obstinate, intolerant, inflexible, or pig-headed (at least the majority of the time). (I acknowledge that I can be opinionated - but the Libra in me desperately tries find balance.) Rather, I attribute my disposition to the fact that in all arenas I have a tendency to bring my whole self with me. (Many times, to my detriment.) Whether the situation involves my children, my relationships, my profession, my avocations or my beliefs.  My whole self is brought to bear even in my approach to living with a chronic disease. In all of these I am present. With such a self - investment and the high stakes that attach when you are personally vested, I admit that accepting defeat is not in my genetic make up.

That is not to say that I am incapable of graciously embracing contrary situations, and the concomitant lessons that unpleasant circumstances offer. I am also not generally naive. I consider myself cynically optimistic. An an optimistic cynic I embrace such adages as: "evil can only triumph if good people do nothing:" [Edmund Burke] And dare to expand that ideal to encompass my further belief that people can do as much harm, if not more, by their overt negligence and inaction. For me, this view finds its way into all aspects of my life. To passively accept defeat and be a bystander is, in my little universe, tantamount to overt negligence. And, personally abhorrent to me.

Anyone who truly knows me would most likely agree that I am not one to accept defeat. Analyze it, scrutinize it, dissect it, challenge it, do everything to rise above it -- yes. But to meet defeat with approval or favor, agreement or consent, or to accede a bad or destructive situation as true or sound. No, I don't think I am capable of that.

Tuesday, January 4, 2011

Auld Lang Syne 2010

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****** "Auld Lang Syne" ... here here!

Is well known Scottish folk song, sung in many English-speaking (and other) countries to celebrate the start of the New Year at the stroke of midnight. By extension, its use has also become common at funerals, graduations, and as a farewell or ending to other occasions.
The last chapter of 2010 was defined by the banes and blessings that life gives us. Whether we want them or not. Below are my own 14 B & B s that defined my December 2010.

Blessing:   a dear old friend (as in time we have known each other - definitely not our individual calendar) and her lovely Bond-boy came for an long-anticipated visit to celebrate her 1/2 century mark upon this planet.

Blessing:   my eldest hermana visited with my niece and her boyfriend as they conducted a pre-relocation reconnaissance trip to the southwest.

Blessing:   back to back visitors forced me to take some needed time away from the office to be a ... person.

Blessing:   a 9 year old son.

Bane:   a 9 year old germ-infested son.

Bane:   a 9 year old who has germier schoolmates who shared a flu virus.

Blessing:   being self-employed so that I can stay home and nurse sick 9 year old.

Bane:   work-aholicism compromised my immune system and allowed the insidious flu virus to take root in my system.

Blessing:  9 year old recovers in 3 days.

Bane:  flu virus within me turns into pneumonia, with a dose of double ear infections, an assault of sinusitis, and a smattering of conjunctivitis in both eyes.

Bane:   3 weeks of illness requiring two rounds of hi-octane antibiotics and a perpetual high fever.

Blessing:  very cool delusions and hallucinations as a result of 102.5+ fevers.

Blessing:  older children come home from college for the winter holidays.

Bane:  doctors wanting to do yet another MRI and ultrasound to try and determine what the mass is that has taken root in the locale previously occupied by my right ovary.

Blessing:  Well enough by New Years Eve to toast my 22nd wedding anniversary with an expensive and fab Zinfandel that my "old" friend brought from Toulouse.

Blessing:  Being here to bitch, moan and celebrate the diverse banes and blessings life deigns to bestow.


. . . And surely ye'll be your pint-stowp!

And surely I'll be mine!
And we'll take a cup o' kindness yet,
for auld lang syne.

We twa hae run about the braes
And pou'd the gowans fine.
We've wandered mony a weary foot,
Sin' auld lang syne.

We twa hae sported i' the burn,
From morning sun till dine,
But seas between us braid hae roared
Sin' auld lang syne.

And ther's a hand, my trusty friend,
And gie's a hand o' thine;
We'll tak' a right good willie-waught,,
For auld lang syne.