Tykerb Tigers need an Oprah show

SoCalGal · 05-08-2007, 09:38 AM

First of all, Joy, your posting made me laugh. Thanks. Quite the club. Tykerb Tigers, Diahhrea Divas...hopefully we will all settle into some kind of a regime which will keep the mets down and allow us some grace and joy in our daily lives.

We are all fierce warrior woman - and we are pioneers in the treatment of cancer.

Someone recently said that metastatic disease is the new "c" word. With Aqua the new brown, which was the new black, I think that Mets is the new "c" word. EVERYONE talks out loud and with optimism about "regular" cancer but people still whisper about "stage 4" in an ominous tone, wide-eyed and sometimes with pity instead of compassion.

Since learning about my own stage 4 last month, I have learned that you can survive this, too, as is evident on this website. I have leaned that one can look towards a future, even if it means managing a chronic disease. I've learned that surviving is more than a wish, more than a prayer, it's a possibility.

I am thinking of ways to educate the general public - to show how important it is to keep fighting for a cure, for clinical trials. To show life with mets. Mrs. Edwards has begun that process, but we need to represent from the Tykerb Tigers. Why not a feature on Oprah?

Extraordinary women surviving the "C" word...Now that would be a great show!

hutchibk · 05-08-2007, 09:52 AM

I agree Flori - with everything you have said!

If someone can help me write an outline about the Tykerb Tigers and Diarrhea Divas, I think I have an in and can find out who to pitch it to at Oprah.

SoCalGal · 05-08-2007, 10:07 AM

Brenda - I'll help. Am off to a doc appt for gene counseling so I can get the test and my insurance will pay, what a stupid waste of time to see a counsler first just to satisfy blue cross. This can be one of our segments, "insurance stress" and how they create BS rules to try and discourage woman from pursuing care and meds they require.

Joy · 05-08-2007, 01:37 PM

I also agree with everything said and said so well. I'd like to think we are the new faces of cancer. There are so many angles to examine with living with what is universally such a dreaded disease and what it takes to do that every day.

chrisy · 05-08-2007, 03:07 PM

Flori, BH and Joy,

"I'd like to think we are the new faces of cancer. There are so many angles to examine with living with what is universally such a dreaded disease and what it takes to do that every day."
Joy you really said it well. It reminds me of a "stupid insensitive comment" a woman at my church made. She told me she was going to treat her (stage1) BC very aggressively because she didn't want to end up like me! I almost started laughing out loud because the first thought that came to my mind was "well, yeah, stage IV cancer isn't for everybody!"

It takes very special people to live with this every day - and although I know none of us would really choose THIS as our way to be "special", I want you to know that you really ARE!
Imagine "less special" people being able to face this crap (oops, more potty jokes!) with such humor, grace, and strength.

You guys are just awesome

hutchibk · 05-08-2007, 05:30 PM

OK, I'll just come out and say it... WE ROCK!

dede10 · 05-13-2007, 01:29 PM

I just want to say as a stage 4'er, that I would love to see more on TV of survival...the new face of cancer. It never ceases to amaze me the 'stars' who are stage 1, who have done everything from smoking pot to chemo to radiation, and they have beat it! now, us stage 4'ers are never even recognized...not in the media, not by the 'stars' or anyone else. (with the exception of our loved ones, and others who are stage 4)

It would be nice to see others have fought & survived! And we really are not alone

StephN · 05-13-2007, 10:52 PM

Well, I have to wholeheartedly agree with most of what has been said in this thread. I am not a Tykerb Tiger, but may be someday if mets kick up again, so am watching all these posts with great interest.

Elizabeth Edwards is not far enough into her Stage IV "life" to really appreciate where most of us are in our survival. She was not the greatest spokesperson on the Ted Koppel show. A "babe in the woods" so to speak. Maybe waiting for her first scan at that time.

It is so difficult to transmit to others who have not lived this cancer life what it takes to manage our "new normals." There is no balance in our lives as we knew it in the past. We learn to live on a teeter tooter, trying not to let the ends touch the ground. Our "cancer sea legs" as it were.

Could we really make Oprah and her viewers understand at all?? Maybe worth a try, but how to get the idea across that our cancer becomes something like a nagging wart that we have to keep dealing with? We have to minimize it, but at the same time keep a healthy respect for the disease. Otherwise we would all be in the Loony Bin.

Andrea Barnett Budin · 05-14-2007, 11:35 AM

COULD YOU ALL COME OVER FOR A DRINK NEXT WEEK? I just love everything each one of you has expressed! You are so my kind of people. I am a stage 4er and understand exactly your points. Mastec., reconst., 2 rounds of chemo and the incredible side effects that brought me to my knees, barely able to speak and I see Cheryl Crowe on Larry King (who had a lumpectomy and radia -- not to be minimized and kudos to her for surviving). She points to this tiny dot that was tattoed to guide the radiol and says she has decided for the time being to keep it though it is UGLY as a reminder of her victory. Mastec and tram flap reconst, 2 out of 18 nodes removed along w/ severing muscle and nerves, 2 ports and numb areas that go from hip to hip up the left side of my torso and under my arm (sentinel nodes didn't exist in '95), a malformed armpit, a natural manmade new breast with no sensation -- what I would give for a dot or two.

Yes 4th stage met canc SURVIVERS could alter the face of cancer for the world. Instead of whispering the word, or calling it the big "c", afraid to even speak of such a horror, perhaps people would begin to see it doesn't have to be a death sentence. You don't have to condemn yourself! WE COULD ALTER THE STATISTICS MY CHANGING THE PSYCHOLOGICAL APPROACH OF CANCER PATIENTS. I believe stats reflect a mob mentality -- mass hysteria. Once you work on your mindset you're half way, no 90% there.

EVERY THOUGHT IS LIKE A PRAYER. EVERY PRAYER IS A POTENTIAL MIRACLE. WE ARE EACH A POTENTIAL MIRACLE. It's more than getting your game face on, it's about Spiritually connecting with the power we each have to control our thoughts, and thus our emotions. Emotions emanate from what we think. We our thoughts are full of triumph, we will live AS IF. As if what we want ALREADY EXISTS and all we have to do is concentrate every shred of our Energy on calling it to us! We can be the MASTERS OF OUR FATE! We each have that power.

Don't look at a 4th stager as a lost cause. THERE ARE LOTS OF OUT HERE -- ROARING...!!! With love, ANDI

hutchibk · 05-14-2007, 11:51 AM

OK, it's time to start writing a proposal for the Oprah show about Her2support.org and all of the inspirational survivors here... We need to put a face on living STRONG with chronic cancer. Like I said, I can get it to the producers, we just need to put it on paper.

Andrea Barnett Budin · 05-14-2007, 02:02 PM

Generally, in our world, that cancer word is mostly whispered, spoken of in hushed tones, or referred to as “The Big C”, or “you know”... We are scared to even speak of such an atrocity, to name it out loud. As if the very word might be contagious! And we each hand down this societal attitude, with our body language and our fear-filled references, perpetuating the fear, for future generations, making no strides in a very necessary ATTITUDE ADJUSTMENT -- we fourth stagers have all learned and discussed on our website. We do the same with our non-discussions of Death and Dying. And, in so doing -- we stack the odds against ourselves! THE TIME HAS COME TO FIX THIS CULTURAL MISTAKE THAT IS KILLING MILLIONS!

CANCER IS ALL ABOUT FEAR. And attitude! Such taboo areas perpetuate the fear and give our power away to it, thus creating ominous statistics against our survival! We fourth stage breast cancer Survivors have found this out and want to share this with the world. To shout it from the rooftops! When you become defeated psychologically by the poor statistics your thinking serves as further “proof” that the insidious disease will likely kill us. It is, in fact, a kind of MASS HYSTERIA. The collective Energy of hordes of others, whips up and exaggerates our own fear into a cyclone of emotion. We automatically emulate others’ responses, caught up in a kinetic force that produces and changes the motion and emotion of masses. The air becomes electrically charged with fear, permeating our psyches, stirring us up without our even realizing what is occurring. We scare ourselves to Death.

We've all learned to be well-informed about our disease but also to ignore statistics. WE ARE NOT STATISTICS. We are human beings. And miracles can, and do, happen. If one person has survived your kind of cancer – “YOU” CAN SURVIVE, with clear, focused intention, determination, passion, love, expectation, faith, humor and laughter, vividly positive imagery and programmed thinking of WELLNESS, HEALING AND HEALTH. Music and poetry, the embracing of the unique beauty of Nature and all Created, playing with a pet, watching a Baby or Child lost in a world all their own -- is all enchanting. And quite therapeutic. STOMPING ON FEAR!

Please help us joyful Women who refuse to give up or give in, who defy the statistics have learned to live with cancer and to thrive anyway. We appreciate each and every day as the gift it is and we celebrate it. Some days we crash. But, together, with the love and support of others, we each have decided to be a part of the forty year plan. We don't think -- WE ONLY HAVE ONE LIFE TO LIVE. We say -- WE ONLY HAVE AROUND A HUNDRED YEARS TO LEARN TO GET IT RIGHT. We see ourselves far into the future with our families. Attitude is 90% of the battle. Conquer the fear and you conquer the disease. That's the message we want to carry to the people. To share fourth stage cancer victims secrets of success and offer hope and bliss to those who come with us and will come after us.

What do you think about this for starters?

ANDI
I WASN’T SAD. I WASN’T ANGRY. I didn’t think, Why Me?! Poor me! Only the millisecond of the question, Is this how my story ends, whooshed by. Then, a brave -- NO! followed close behind. My Inner Voice spoke that NO with profound authority! I

I found myself wondering again, Is this supposed to happen?, which made me mull for a bit what that thought even meant! It was so esoteric!! YOU HAVE TO THINK THIS THROUGH, came from that Something Deep Within Me. EVERYTHING’S HAPPENING TOO FAST, DARTING AT YOU AND MIXING YOU UP, The Self That Lives Deep Within said. I couldn’t think straight, that’s for sure. My ego was seemingly knocked unconscious. It urged me to run, but again, my Inner Voice had wisely suggested that would be pointless. It had sensibly interjected this perspective, before I realized I’d even had such an inclination. STAY HERE -- LOCKED IN THE DOCTOR’S EYES, it told me. I kept fixating: It’s not a lump. I never had a lump. Never. Barbara had lumps. Lynne, Elaine, Jane had lumps. Lots of people had lumps.

Andrea Barnett Budin · 05-15-2007, 08:45 AM

4th STAGERS ARE THE NEW FACE OF CANCER. Metastatic breast cancer does not mean the end of your story! Cancer is all about fear. With faith, we are each dedicated to annihilating the malignancies in our bodies. To retaliate with a vengence! And then find our way to living in joy and peace. A neat trick to master. WHO ARE LIFE'S VICTOR'S? The one's who reach for the impossible and KNOW they can do it. Who BELIEVE it. Envision it. It's surely no walk in the park, but it is doable. Having had the initial diagnosis, done surgery, chemo, radiation, experienced the full array of nasty side effects and THEN get nailed w/another diagnosis you feel demolished. Once you get past taking 10 steps backward, that you're up at bat again, you charge on as best you can. You know what you're facing all too well (with the treatment and the side effects), you know full well what's at stake -- and go forward anyway. If you're lucky, you go into remission. Become NED. Stable.

Then, you have to be alert to every weird symptom that pops up, every pain you have w/each new day -- and you have to do it all while not obsessing about your situation and feeling grateful for the gift of each day. Waking up and finding you're still breathing. Finding the delight in each day, rather than focusing on the fears and what ifs. You have to be responsibly and reasonably on guard at all times, and look like any one else going about their day. We have to be upbeat while feeling seriously tempted to freak out and succumbing to a panalopy of fears that naturally come with facing a life-threatening and insidious disease.

Some of us become Diarrhea Divas, have deep muscle pain in our arms and legs, severely dry eyes that tear incessantly, have nails that turn black as black can get and start to fall off, bloody noses, not to mention "complications". But we forge ahead -- knowing you must do the thing you think you cannot do. Knowing that the bravest people are those who have a clear image of what is before them, and yet, go out to meet it! That we are more than we can imagine. WE ARE CAPABLE OF THE UNIMAGINABLE.

Cancer transforms us and enhances our lives in immeasurable ways. We see more keenly, we appreciate everything most definitely, we love more easily, we become aware of the bigness of the little things. We evolve and grow and become more than we were yesterday. And we share that with all who are in our lives and who we chance upon.

Sending loving thoughts to all you beautiful, special Spirits... ANDI

Jeanette · 05-15-2007, 09:16 AM

You ladies rock'''' I am stage 2B, but I follow all of your posts, I get a good chuckle every now and then and also a few tears. having Cancer is not a fun thing and a lot of people think because your treatment is over you are cured. I would really love to see you gals on Oprah. Hugs and Blessings to you all, Jeanette

Andrea Barnett Budin · 05-15-2007, 09:39 AM

I remember my onc telling me, when I asked, that the side effects would persist -- maybe for a few mnths. 6 mnths later, 9 mnths, a yr -- I thought there was something wrong w/me. I'm not a complainer. I would only tell the doc my phys problems to kind of report them, in case they were a sign of something other than a side effect. I had read the side effects list and decided not to get any of them if possible. Some on the same chemo get up and go to work. I was shuffling, vs walking, weak, wobbly, shaky, light-headed, foggy brained and on and on. I asked a friend who had leukemia for 10 yrs about my ongoing symp still ongoing, despite the onc's prediction. Don't listen to them. They don't know what they're talking about (on this). His side effects lasted yrs. I felt better already. The neuropathy in my hands persisted for many yrs. The IBS which started w/Taxotere and Herceptin and continued after Taxotere, my onc said did not come from Taxotere. Coincidence? Maybe it's the Herceptin that I stay on since '98 and haven't THANK YOU GOD on bended knees, had a recurrence while staying on. Who knows. No, you don't just say at the end of treatment, OK, that's done. A done deal. You keep your eyes peeled, stay in touch w/your body, every single body part, on alert. You eat better. You read about every new revelation re cancer and esp bc. You tell your body every day to stay healthy and well. You command it.

You're so right. We don't just have bc and then walk away.

And, by the way, it's great that someone from this site is on TLC, but not in the background, in the red and black suit. A 4th stager has a lot more substance to add on the subject than Cheryl Crowe, or even Eliz Edwards. You want to give the audience the real deal -- put a group of savvy, happy 4th stagers up there who've been through hell and come out smiling. Just my opinion. ANDI

hutchibk · 05-15-2007, 10:48 AM

Andi - Thanks for all of your thoughts... I am reading and taking it all in. Hopefully sometime this week or next, a few others will put their thoughts into the mix and we can start to come up with an outline - a proposal as it were - but I believe that your writings pretty much cover most of the bases! There is no way that Oprah's producers can turn a blind eye...

IRENE FROM TAMPA · 05-16-2007, 04:29 AM

What a great way to get our message out...

Being a 11 year survivor and on the Tykerb/Xeloda trial since last August, I would love to join in the band wagon.

BRENDA - let me know how I can be of help in pushing this through. Any
knowledge that I may have and can share would be my pleasure.

I have always wanted to be on the Oprah show as a spectator, but to be on for this would be a wonderful way to bring out awareness.

Sheila · 05-16-2007, 05:16 AM

Brenda

Count me in to help you anyway I can....this is not a disease for "sissies." We need to get up each morning, put on our "big girl panties" and get ready to fight. Each day is a strategy....we need to prioritize out lives, our fears, our futures....we are thankful for each new day, but must be vigilent and continue to fight to have each new day. Treatments, fears, constant surveillence from scans, no hair, some hair, numb body parts, missing body parts, feeling like crap...yep, this disease is not for sissies....we are a tough bunch...pioneers in the new future for stage IV's...accomplishing things never done before. On this site are the bravest women I have ever met.....a sorority of Survivors picking each other up when we fall, encouraging each other when we are down...its not just the treatments that keep us going...it's having the support we find here with each other.

dede10 · 05-17-2007, 08:22 AM

Yes, a wonderful Idea! And The more women that get there, the better! For others to know that its not just them....that there is a fight going on, and we can all fight together....which makes the cancer word look smaller.

No, none of us are a stat...that all of us are women fighting, and no giving up!

Roz · 05-17-2007, 08:13 PM

Although I don't post very often, I know that without this site I would feel terribly alone going through this. Only those who have experienced it can really understand what we are going through and have gone through to date. So thank you all for your thoughtful reflections, frustrated raves, and most of all, support and understanding.

Andrea Barnett Budin · 06-01-2007, 01:58 PM

THANK YOU GOD (AND JOE) FOR FINDING THIS WEALTH OF POSTS THAT HAD GONE MISSING! They are not floating out there in cyberspace. I could never recapture all these priceless words re "our" project -- the new face of cancer, 4th stage and SURVIVING! Sending healing energy to all my beloved soul sisters who all rock... ANDI