Finding Little Comfort in the Statistics of Survival

bejuce · 10-21-2011, 10:44 AM

Has anyone read this article? These numbers seem so low!

emmastarr · 10-21-2011, 11:00 AM

I agree, those stats aren't very encouraging at all.

Andrea Barnett Budin · 10-21-2011, 11:14 AM

When I was diagnosed in '95 -- 4th stage invasive lobular carcinoma, w/2 out of 21 nodes involved -- I bought lots of books on the subject, to edify myself.

Dismal. Depressing even. I quickly tossed them aside.

I reached instead for books sold in the SPIRITUALITY section, where I'd never ventured before.

I learned to also check out the PSYCHOLOGY section in the stores.

I KNEW I was a person. A sentient being. Not a statistic. Not a number.

I already KNEW about the mindbody connection. I had personally experienced healing a years long debilitating back problem (diagnosed as a degenerating disc disease). I was set free from the pain by learning how to correlate the moments of extreme agony w/what I was thinking at the time. Just that knowledge set me free! Within 2 wks, w/no other intervention.

I have learned that if one person has survived you particular cancer -- YOU too can survive. Who are those people in that little group of survivors? Where they just lucky? I DO NOT BELIEVE THAT. They were the most passionate, focused people who rejected negative thinking and concentrated all their energy on HEALING, being in that little group, vividly seeing themselves as a Survivor, making their Intention and Expectation definitively clear!! The power of our thoughts, our Intention and our Expectation is awesome.

You were given the gift of healing, of using your thoughts and the images that go with them to acquire your deepest desires. What you want already exists -- in the Spiritual Realm. Call it to you!

KNOW you are going to Survive, against all odds! Own that. BELIEVE!

We are each miraculously empowered! Use your God-given birthright. It's been there since you drew your first breath in this world (the Physical Plane). Draw your dreams to you!

With pure, loving, healing energy being sent your way my Sisters...

Andi

Vicky · 10-21-2011, 11:46 AM

Andi, thanks for the enlightening and uplifting message! I refuse to look at stats anymore and fortunately I have a doctor who says "prove me wrong." I would love to hear of some of the books you would recommend regarding both spirituality and psychology! I too feel it is up to me to figure out how to best help my mind, body, spirit heal in conjunction with traditional treatment. I am completely open to suggestions if you wouldn't mind! Thank you!

StephN · 10-21-2011, 12:01 PM

That article has some interest as a personal story, but since there is no mention of the NAME of the book referred to, I have to believe that it is not a serious textbook and any stats on breast cancer have not been updated in years!

Wad up that information and throw it over you shoulder. Do not look back.

Andrea Barnett Budin · 10-21-2011, 12:52 PM

Great advice Steph! As always. Vicky, I'm often asked what books I would recommend. So I have a list. And it is my honor to share them with you and all who may be interested.

BTW, I've proved the oncs wrong. I have become their miracle patient. And the nurses' as well. EVERY THOUGHT IS A PRAYER. EVERY PRAYER IS A POTENTIAL MIRACLE.

YOU ARE FAR BRAVER AND MORE COURAGEOUS THAN YOU EVER THOUGHT. YOU ARE AN EMPOWERED SPIRIT, I SWEAR...!

I started with Dr. Mitchell Gaynor's (Integrative Oncologist in Manhattan) HEALING ESSENCE, but I believe you have to call his office to order it, if it is even still available. 212 - 472 - 2828
From the moment I read the first page -- I KNEW I would live!

Then I fell in love w/Dr. Wayne Dyer...
Your Sacred Self
You'll Believe It When You See It
Wisdom of the Ages
The Power of Intention
There's a Spiritual Solution to Every Problem
Manifest Your Destiny
The Nine Principles of Getting Everything You Want
Secrets of Your Own Healing Power

Eckhart Tolle:
A New Earth
The Power of Now

The Travelers Gift -- Andy Andrews
Seat of the Soul -- Gary Zucav

Healing Words -- Caryn Goldman

Kitchen Table Wisdom -- Rachel Naomi Remen

Dr. Larry Dossy:
Healing Words
Healing Beyond the Body
Reinventing Medicine
Recovering the Soul

May these authors words inspire you as they have me. I read with a red pen in hand, underlining, starring. I see them s tomes of wisdom...

Andi

Kellennea · 10-21-2011, 02:00 PM

Andi -

I absolutely *LOVE* your attitude!

Vicky · 10-21-2011, 02:04 PM

Thank you Andi! Ohhh, I am thrilled with this list and I have read about 1/4 of them already but am also ready to tackle more!

Andrea Barnett Budin · 10-21-2011, 02:08 PM

WHAT'S SO COOL is that if you reread a book years later, you find things you missed, see things you saw before in fresh light.

We are meant to keep evolving. Continue exploring, growing and expanding.

I would never have volunteered to get breast canser, but I am richer for the experience. I am so much more than I was. I am on a path I would never have considered, had the bc not enveloped me.

The sky is bluer. The trees are more alive. I have found that I am a Spirit, with a mind and a body. Never figured that out before...

CoolBreeze · 10-21-2011, 02:24 PM

What bugs me about that is a Doctor wrote it. Her statistics are not correct and are dated and yet she used them to scare people. Not cool.

Debbie L. · 10-21-2011, 04:46 PM

Bejuice, I do know what you're saying, while feeling like I've mostly moved on from that place. I, too, was nearly-obsessive about looking for stats to give me answers to what would happen to me, in those first years. But over time, I realized that wasn't helping me to live my life. In the beginning, understanding at least something about my prognosis seemed like it WOULD help me. But that was because that understanding seemed to offer me a bit of the precious thing that I'd lost -- my illusion that I had some control over the length of my life. Not that I realized all that, at the time (smile).

There are probably as many ways to come at this major issue, as there are people who face it (the issue being mortality, so that would be all of us, who eventually face it).

As we say so often here -- there is no right nor wrong, no single way that is best -- for us to look at this. It is to each of us to find the way that best suits us. And since I have not yet seen expression of MY way in this thread, I add another perspective. Not necessarily your truth (which is normal, and okay). But my truth:

I think the whole area of "positive thinking", as it relates to controlling cancer progression, is magical thinking. It does not help me at all, to think that if I (somehow!) control my thoughts, I can affect cancer. (disclaimer: my attitude can do good things for my life in other ways, and I do appreciate those days and moments when I'm in possession of that heart-felt positivity.)

So I do not meant to say that I do not take many "positive" messages from the cancer experience. For me, an immensely positive take from this experience has been the realization that the future is uncertain. Big duh, I know. But if we really think about that, about how very true it is -- we can take it as bad news, and wring our hands in worry. Or we can take it as a sharp prod, to look at what we're doing right now. Right now, we are here, we are alive. THIS, right now -- that's what counts. We have so little control over the future, in ways cancer-specific, and not-cancer-specific.

That live-in-the-now concept was more-easily incorporated into my life in those first few years after diagnosis. A serious diagnosis does narrow the focus and the sense of urgency. Now (10 years out), I have to remind myself repeatedly of the power of that message. But every time I visit that message, I am able to let go all those relatively-unimportant details of life, and to bring my focus, RIGHT IN THIS MOMENT -- to what is important. Because I acknowledge that I might die tomorrow, I savor today. I no longer seek reassurances that I will survive cancer (or life) if only I think the "right" thoughts or do the "right" things. And that is what works for me.

Warm regards,
Debbie Laxague
PS: to clarify again, I do not submit this as an argument that this the only, nor the "right" perspective to embrace after a cancer diagnosis. It's just my way, and I post it here in case others need validation for feelings different than what has been expressed so far in this thread.

Laurel · 10-21-2011, 06:44 PM

Guys, I just go on. I just take joy in the simple things of life. For instance, we have a flock of 6 wild turkeys, 5 males, and one female that stroll around the farm. When I drive back the lane and find them nearby I send the window down so I can "chat" with them. I gotta stop because they are becoming tame. Some hunter will plug them if I am not careful.

I talk to cows, and sheep, birds. I delight in trees and tell them how happy they make me. I know it is nutty, but I just am so delighted by nature with all its wonders. I love the weather even when it sucks (ok 15" of rain in one day is scary, but that is due to flooding).

I just don't think I am going to die until I have achieved my goal of being a crazy old cat lady. If I am wrong, well I haven't lost a dang thing by being optimistic and trying to enjoy my days here on earth. If I am wrong then I am thinkin' heaven is gonna be a total gas and I'll enjoy that too!

Yes, I am a true POSITIVE thinker, 'cuz I am believing I am going to slide in under the wire and get behind those pearly gates!

NEDenise · 10-22-2011, 08:28 AM

Ladies...
I couldn't agree more with those of you who recommend that we...
focus on the positive!
toss those old statistics away!
know in your heart that you WILL survive!
enjoy every single day, and treasure the beauty around you!

You are absolutely right!! IMHO

My brother loves the quote, "78% of statistics are 90% made up"!
When people, or articles start quoting statistics, I'm trying to train my brain to glaze over, and take me to my happy place.
We are all sooooo different! I really can't believe that any one study has enough women exactly like me, in it...to make the statistics applicable to my prognosis.

My chances of survival are 100%...no matter what someone quotes in an article! (and like Laurel pointed out...I have heaven waiting for me on the other side...so it's a win/win!)

Love and hugs to all of you!
Denise

Mtngrl · 10-22-2011, 09:25 AM

Great discussion. My thanks to everyone.

I do think there's a mind/body connection, but I don't think we either give ourselves cancer or cure ourselves solely with prayer/meditation/positive thinking or the like. However, I do think it's quite possible to kill myself with negative thinking, with giving up, with saying "what's the use?" And it certainly can't hurt to harness the power of the mind in service of a physical outcome that we prefer.

Except for one thing. I would hate for anyone who "fails" at that to think she did something wrong or she just didn't want it enough. On top of all the miseries of cancer diagnosis and treatment, cancer patients are supposed to be cheerful and positive. I think the subtle (and sometimes not-so-subtle) pressure to do that comes from society's uneasiness about death and dying. It's almost like I have to pretend I don't have an incurable illness so other people can go on pretending they aren't going to die. I have decided I can do them (and myself) more good by learning how to live as fully as possible.

For me the best balance is to live in the Now as much as possible (thank you, Eckhart Tolle and Jon Kabat-Zinn) and to cultivate an attitude of gratitude, wonder and joy. I realize the latter is helped a great deal by the fact that I don't feel sick. I may have stage 4 cancer but it hasn't affected my body much. The days I do get gloomy or grumpy are usually correlated with some physical complaint. I realize I've been lucky so far in that regard.

For me it's a matter of submitting to and accepting my own mortality and being happy, grateful, joyful and fully human not just in spite of that fact but because of it. It is my creatureliness that makes me who I am. It is this body, this mind, this spirit, this history, this unique expression of creation that is me, myself. Inevitably, mortality is part of it.

Nobody ever gets "done." My "do" list, my "bucket list," my hopes for the future, will be interrupted at some point, even though I will always want more. But I realize I can't let my wanting more blind me to the life I have now. I used to be very driven and goal-oriented. Then I noticed that every time I hit a goal I felt let down. That's because I kept thinking that realizing the goal would make me happy, and it never did. Then I figured out that happiness is not getting what you want, it's wanting what you've got. Happiness is what happens. I know a lot of people who don't have any obvious problems but who are miserable. And I have known people with incredibly bad luck and heartbreaking physical ailments and deformities who simply radiate love and joy. "I would be happy if _____ [fill in the blank]" is simply never true.

The Psalms often talk about the "sacrifice of thanksgiving." For me, the key to happiness and wholeness is to Be Here Now and be thankful--to radically accept my situation and quit wishing it weren't so or imagining that if I were in charge of my fate I'd design a better one. My ultimate destiny was set the day I took my first breath. It is certain that someday I'll take my last breath. OK, so now what?

I listen to guided imagery for healing. (As I said, if figure it couldn't hurt.) When I first heard one of the affirmations, when I was newly diagnosed and still freaked out, it was quite off-putting. But now I love it. It says something like, "More and more, I know that I can heal myself and live or I can heal myself and die. My wholeness is not determined by my physical condition."

I am whole, healed, accepted, loved and perfect in my imperfection, in my finitude, in my fragility, in my humanity. There's really nothing to be afraid of, and there's everything to gain from seizing the moment and loving it as completely as I can. The present moment isn't much, it's just all we have. It's all anyone has.

NEDenise · 10-22-2011, 10:31 AM

Amy,
Beautifully eloquent, as ever. Well said!
Thanks for sharing your deep insights about your journey.
God bless!
Denise

StephN · 10-22-2011, 11:00 AM

Nice to hear some of your philosophies so well stated.

MTN - I also listened to the same positive affirmations tape, and since I was given such a dire prognosis with raging liver mets, etc., I needed to hear those words you quoted. They helped me get my head into a better place and quell some of the doubt that raced through me at my stage IV diagnosis. I did not have long to live in limbo wondering if my cancer would strike again.

It was bewildering to me how my body could just ignore a year of surgeries, chemo and radiation and let my cancer just have its own way so quickly. My stage IV was dumped on me like a ton of bricks. Just that fast, as I thought I was feeling quite well!

Whatever those nightly bedtime tapes did for my mind-body connection, it was my mental state that needed calming and that was achieved.

I was not yet in a place where reading would have done me any good, and I could not concentrate anyway. My energy was going toward sending the chemo to those too-numerous-to-count mets.

StephN · 10-22-2011, 11:08 AM

I am also with lauren in appreciating every little thing Mother Nature puts in my path. My hubby thinks I am a little strange to talk to the neighbor cats through the windows! But they do stop and look at me - make eye contact.

My bird baths have to be full of clean water and I take the leaves out so the birds can splash around. The feeders have to have fresh food, so if all this puts me in the crazy cat lady category in some eyes, so be it! I am not the only being in this world, and I try to share my environment with whatever other creatures enter it. (Except the birds who eat too many blueberries off my bushes - I do shoo some of those away!)

AlaskaAngel · 10-22-2011, 11:32 AM

Points of view differ emotionally depending on where one is standing (basically, NED from the get-go vs local recurrence-to-NED vs metastatic).

One does whatever one thinks is "worth it" to stay on the right side of the numbers versus what is not worth it, in making the most of the present. People make different choices in drawing that very personal line.

Recognize and give yourself credit for what things you are doing that tend to help (not smoking; exercising daily; making choices about diet; etc.) Remember that the scary percentages include the people who can't or don't make those efforts in general.

Even though numbers are scary, I believe they do encourage people to take stock of what is most important to them and actually get a "round tuit" in taking practical steps to be sure they don't leave behind difficulties for those they care a lot about.

-AlaskaAngel

Mtngrl · 10-22-2011, 12:38 PM

Debbie--I cribbed from you--or riffed on what you said. Thank you for sharing your wisdom.

Steph, Vicky, Andi, Denise, Laurel, AlaskaAngel and everyone else, I am so thankful for all of you. I appreciate you taking the time to give your perspectives.

In Anticancer; A New Way of Life the author tells a touching story of counseling a man with a brain tumor. The patient was an alcoholic "loser." The author (David Servan-Schreiber) figured out from talking to the man that the big issue was he had never done anything worthwhile. The doctor asked if there was something he could do in the time he had left to be of use to someone else. The man decided to install an air conditioning system for a church in his neighborhood. He went to work every day and got up on the roof of the church. Parishioners got to know him. They'd bring him sandwiches or coffee, and they'd talk to him. About six months later, on the verge of death, the man said to his doctor, "God bless you for saving my life."

David Servan-Schreiber lived with brain cancer for 19 years, and finally died from it last July. His book is both about ways we can help our bodies fight cancer and ways we can live well in however much time we have. That's what I love about using diet to shoot for optimal health. I think fruits, vegetables, whole grains, herbs and spices are delightful. I love to cook, and I love to eat good food. Even if it doesn't make a bit of difference in how long I live, the pleasure is a good thing in itself.

That's what I mean about balance. Be prudent. Make wise choices. "Do not go gentle into that good night," but don't forget to live while you're at it. Remember to stop and smell the roses, and talk to the turkeys, and feed the birds, and dance under the stars. It looks like we can all agree about that.

While we're on the subject of statistics, I also learned from Servan-Schreiber's book about a great essay that Stephen Jay Gould wrote about median survival statistics. He was diagnosed with mesothelioma, which had a median survival rate of 8 months. He lived another 20 years, and died from a different kind of cancer. Take a look at what he had to say about that: http://www.phoenix5.org/articles/GouldMessage.html

Peace,

bejuce · 10-22-2011, 07:53 PM

Thank you so much for all your perspectives! I've been reflecting on them when I can and all of your thoughts and experiences have helped me with my fears this week, and most importantly, have given me a new strength and inspiration to keep moving on with my life and enjoying every minute without fear.

You are truly amazing and I am honored to be a part of this community.

Love,

Marcia