My Reality Check Rant ......

[Fay A.]

I AM NOT IN DENIAL......I REPEAT....I AM NOT IN DENIAL. And this is going to be a long one.

I am a Stage IV Lung Cancer Survivor....I've done some pretty drastic things in order to prolong my life, and I don't regret having done any of it. Because I AM still alive, and I'm sure I wouldn't be had I not done those things. And I'm telling anyone who will listen to me that I'm going to do even more drastic things if that is what it takes to let me live. And if one doc doesn't agree I'm going to fire him/her and find another one.

I've learned to find happiness and enjoyment within my physical limitations at any given time. I have to LOOK for it...it doesn't always come to me, and when it does it's a much appreciated gift. But mostly I have to work at it. I appreciate it, then, too.

At this time, there is NO CURE for Stage IV Adenocarcinoma with Bronchioloalveolar Features. I accept this statement as being factually correct at this particular point in time.

At this time, there is NO CURE for Isulin Dependent Diabetes. I accept this statement as being factually correct at this particular point in time.

What I DON'T accept is that those who have Diabetes will be treated for their SERIOUS CHRONIC DIABETES, and any other medical problems they have, but many of us who have Lung Cancer are not always treated for our SERIOUS CHRONIC LUNG CANCER, nor other medical problems we may have.

I keep thinking about the Oncologists who tell their patients that treatment will be "... to prolong life only...". DUH!!!!!!!!!! That's typically WHY we go to them...we want to LIVE.

I know that not everyone thinks the way I do about this. I respect everyone's right to their own opinion about how to live out and end their own lives. But lately I've been feeling like the right's of those who choose to go the "...quietly into that good night..." route are being crammed down my throat. I'm expected to do the same thing, and let me tell you something, Folks, I've never done anything QUIETLY in my entire life. I am not going to lay down and quietly die until I CAN NO LONGER LIVE! At this point in time I can still find joy in each day...not every moment of each day, but I'm willing to bet that those who do not have Lung Cancer are not finding joy in every moment of every day, either.

So....the docs can't CURE me right now....but letting me die of an opportunistic infection, or of starvation, or of anemia, or any number of treatable non cancer related health problems under the guise of "letting the disease run it's natural course" is B___S___! Not treating my painful, life leaching symptoms of advanced lung cancer unless I agree to a Hospice Program is a form of physical blackmail. All of the care made available under the HOSPICE Program should be made available to Cancer patients and their caregivers when in active treatment. If you are still fighting the disease ASK for the same treatments and medications for pain and quality of life problems that are given to Hospice patients. If you don't know what those drugs and treatments are ASK someone who has knowledge of the subject. And if you're told you can't have them unless you are in Hospice FIGHT IT.

Bottom line for me....I'll know when it's time to give up the fight. Until then I'm going to make a heck of a noise about how we are treated...and not treated. And I'm going to continue to live each day to the best of my ability and in spite of those who keep telling me I'm not accepting the various "stages of terminal illness" correctly. I'm the one who HAS the terminal disease....all they've done is read a book or two. And they're the ones who seem to be habitually MISERABLE. I think they have cancer of the soul and the prognosis is not good.

[Don Wood]

Here! Here!

[mhutch1366]

Hooray, Fay!!!!!

I am standing up and cheering, tears running down my face, because you are SO RIGHT!!

I lost my friend Fran last spring to lung cancer, she and I had been diagnosed and had surgery at about the same time. She did not go quietly. She is the one who wrote me "Ain't it grand to be alive to witch!!"

Unfortunately, she was uninsured and changing jobs, and was unable to have radiation or chemo post-surgery. The doctors waited until the cancer came back ( and her insurance kicked in...).

But Fran had HEART!!. I saw her the week before she died, and she was laughing and talking about celebrating Next YEAR's anniversary survivorship. Hats off to you Fran. You're missed.

Fay, I believe in being proactive. Thank you for the reminder.

I believe I will always have "one more good fight" left in me. I too will not go quietly into the night. I am fortunate enough to have an oncologist who thinks theres always one more thing to try. Love that man for his attitude.

I am going to applaud Fay again, and tell you all:

She is my hero.

Love and prayers to all of you,

MaryAnn

[dadstimeon]

VERY WELL SAID!!!

[The Power Of People Helping People / The Power Of Knowledge / The Power Of God / The Power Of Believing / The Power Of Positive Thinking / The Power Of Never Taking No For An Answer / The Power Of Laughter / United We Stand, Divided We Fall / That’s The Key]

https://cissecure.nci.nih.gov/ncipubs (NCI Publications Locator)

http://www.plwc.org/plwc/MainConstructo ... 151,00.asp (PLWC Feature: Talking to Someone With Cancer)

http://www.zanesvilletimesrecorder.com/ ... 87526.html (3-year-old keeps her smile in battle with rare cancer)

http://www.rfalung.com (Radio Frequency Ablation Of Lung Cancer)

http://www.lungcancercoalition.org (Global Lung Cancer Coalition)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (PLWC Feature: Financial Support Resources)

http://www.usnews.com/usnews/nycu/healt ... hqcanc.htm (Best Hospitals)

https://www.alcase.org/advocacy/sign_the_petition.html (Advocacy /Sign the Petition)

http://www.cancersymptoms.org (Oncology Nursing Society)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Questions to Ask the Doctor)

http://www.alcase.org/education/publica ... reath.html (With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free)

http://www.cancersurvivaltoolbox.org (The Cancer Survival Toolbox / Free / From NCCS)

http://www.centerwatch.com (Clinical Trails Listing Service / Center Watch)

http://news.google.com/news?hl=en&editi ... ung+cancer (Lung Cancer In The News)

http://www.thewellnesscommunity.org/pro ... /guide.asp (The Wellness Community / National Cancer Support, Education And Support / Free)

http://www.drugs.com (Drug Information Online)

http://www.alcase.org (ALCASE / Alliance For Lung Cancer Advocacy, Support, Education)

http://www.nlm.nih.gov (Unites States / National Library Of Medicine)

http://www.nlm.nih.gov/medlineplus/encyclopedia.html (Health Information / Medical Encyclopedia)

http://www.google.com (Great Search Engine)

http://blochcancer.org (R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients)

http://www.cancer.org (American Cancer Society)

http://www.cancer.gov (Cancer Information Service / NCI)

http://www.cancerresearchcenter.org (Cancer Research Center)

http://www.aicr.org (American Institute for Cancer Research; Nutrition Hotline / AICR)

http://www.cancerhopenetwork.org (Cancer Hope Network)

http://www.acor.org (Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders)

http://www.meds.com/lung/lunginfo.html (Lung Cancer Information Library)

http://www.lungusa.org (American Lung Association)

http://www.ama-assn.org (American Medical Association)

http://www.docguide.com/news/content.ns ... g%20Cancer (Doctor’s Guide / Lung Cancer)

http://www.healthfinder.gov/Scripts/Sea ... ?topic=506 (Healthfinder)

http://www.medicinenet.com/Lung_Cancer/article.htm (Medicine Net)

http://www.cancerindex.org/clinks2l.htm (Cancer Index / Lung Cancer Resources Directory)

http://www.nfcr.org/site/PageServer?pag ... ncers_lung (National Foundation For Cancer Research)

http://www.patientadvocate.org (Patient Advocate Foundation)

http://www.lungcanceronline.org/effects ... fects.html (Lung Cancer Online / Hematologic (Blood) Effects)

http://www.cancerlinks.org/lung.html (Lung Cancer Links)

http://www.cancer-free.com (Cancer Free Connections)

http://www.healthinsite.gov.au/topics/C ... ung_cancer (Health Insite)

http://www.lungcancerclaims.com (Lung Cancer / Lung Cancer Information Page)

http://www.cancerlifecenter.com/engine. ... =dictionar (Cancer Life Center/ Cancer Dictionary)

http://www.canceryellowpages.com/Resour ... G%20CANCER (Cancer yellow Pages)

http://icare.org (ICARE / The International Cancer Alliance)

http://www.vh.org/index.html (Virtual Hospital)

http://www.lungcanceronline.org/support/financial.html (Lung Cancer Online / Financial, Legal & Insurance Issues)

http://cancernews.healthology.com/focus ... cancernews (Cancer News)

[Joe B]

Fay,

I like your spirit. I agree with you completely, and I sense a very deep frustration with the medical comunity ---many of us share that frustration.

I AM NOT A NUMBER! a statistic, or merely a physical body for their experiments... Cancer CAN be beaten, and I am sick of those in the medical community that limit their thinking and ingenuity to accept the unacceptable. I would like each and everyone of them to have to publish their own outcomes with patients, maybe then they would think outside the box?

why is it so hard for doctors to show enthusiam - even we it is totally called for? ......there are some very good minds that have no passion for the field they have chosen.....

I am a child of God.. and expect myself & everyone to be treated that way..... God bless you Fay... keep up that fighting spirit....

You are in my prayers...

Joe

[ginnyde]

You go girl. Remember, it's not over 'till the fat lady sings.

I don't hear any singing on here, do you?

Love,

Ginny

[J.C.]

Fay,

I'm all for the fight, I saw and lived what my husband went through.

This morning I still had a furious fight with the last hospital that treated

him, no I don't have lung cancer, but I have cancer also and nobody

will make me shut up, and if by lack of luck I come to a point I can't

speak anymore, I'll write.

Good for you.

Love,

J.C.

[shelliemacs]

fight for your rights to LIVVVVVVVVVVVVEEEEEEEEEEEE!!!!!!1

[karen335]

Fay,

You are such an inspiration and I admire the fact that you keep up the good fight. Keep those doctors on their toes and they will realize that you are not a quitter. Give'm he**. I know you won't take no for an answer. You are in my thoughts and prayers each day...

Blessings and prayers...

Karen

[gerbil runner]

You're so right, Fay.

Cancer's like a lottery ticket someone gives you. Even if the odds are one out of 50 million, would you throw the ticket away? No! Because SOMEONE has to win, why not you? Life with cancer is the same. You don't throw it away, even if the odds are only one in fifty million. That lucky one just might be you.

[sharyn]

Fay - I swear I could hear you speak every word of what your wrote... Like you were standing on a mountain top speaking to the masses below. GOD BLESS YOU - You inspired me today more than you will ever know. Much Love, Sharon

[cathy]

Love ya Fay!

[lilyjohn]

Three cheers for you Fay. Keep up the good spirit and keep giving them hell any chance you get. Don't forget to add that NO ONE has the right to judge your quality of life but YOU! It is time someone finally spoke up and said what all or most of us feel. I give you credit for having the guts to be the one to do it. I agree 100% with everything that you said. God bless you and may you live many many more years.

I suggest that each time you make another year you find a way to rub their noses in it. The same for everyone else. Go to them and tell them "you wanted to give up on me but I didn't. I'm here for one more year what do you think of that?" Remind them too that it was your doing not theirs. Maybe someday they will wake up and smell the roses instead of all the sh** they dish out.

[David P]

WHOA!!!! Fay!!! That was beautiful!!

Now when are you going to turn around?

David P.

[paddy]

Keep it up Fay, and I agree with David P, I would like to see you turn around too! (In more ways than one of course!)

Paddy

[-Cheryl-]

Fay,

Your message has lifted me! I needed to read your words today! I too refuse to "go softly into the night!"

Cheryl

[SandyS]

Fay -

You are AWESOME (but I already knew that!)

Your words are very strong, as is the message.

Do NOT take their crap!

Hugs and prayers,

SandyS

[Guest DaveG]

Last Wednesday, January 28, at the support group at U of Wisc. Comprehensive Cancer Center, we had a clinical nurse from the Palliative Care Unit come in and talk to us. She stressed the fact that with lung cancer, especially in Stage III or IV, we are facing what is essentially terminal disease. As patients, according to her, it is our job to prolong our life as much as possible. Palliative Care, has, for many years, been associated with "end of life" issues. Her comment on that is not exactly printable. At the University of Wisconsin Hospital and Clinics, anyone with pain, may go to Palliative Care. The level of illness is not considered, only the level of pain is considered. They emphasize quality of life.

On Tuesday, when my Oncologist, Dr. Joan Schiller, told me she could see no active cancer in my scan, I don't know who was happier, me, my wife, or her. Dr. Schiller was elated. The very next thing she asked about was my comfort, as she knows that I still have some residual pain from the surgery two years ago. She wanted to make sure I had pain killers (oxycontin and oxycodone). She wrote out prescriptions for both, oxycodone for now, and oxycontin for 2 weeks from now, according to the dates of the previous prescriptions.

I write all this as an example of the importance Fay alludes to of having a medical team you have faith and trust in. Dr. Schiller was honest with me right from the start, even when I was Stage I, she told me then that the cancer could come back and that she would do everything in her power to give quality of life and allow me to call the shots as to when we quit. She believes that as long as the patient has the will and is able to fight, she will fight right along side the patient. She stressed one thing, however, she doesn't have the cure. She gets very serious when she talks about that, as she wants people to live, but wants them to realize they will have to live regardless of, and, with cancer. I also believe, that Dr. Schiller is very frustrated about not having the cure. That is something she wants very bad, the ability to cure LC.

Am I happy to be cancer free for now, you bet I am. On the other hand, I am being followed every 6 weeks with scans and oncology visits. Why? Lung Cancer can raise it's ugly head at anytime and the roller coaster ride we all talk about starts all over again. I look at it this way, cancer lives on my time. When I have active cancer, I do battle and throw all my concentration into over coming it. When the cancer is not active, as it is now, I want to live life to its fullest.

Fay has been an inspiration to me. She has kicked me right sqare in the *ss, when she felt like I had gone to far, but yet she and I have cheered each other on when cheering was needed.

If Fay wants to vent, if anybody wants to vent, go for it, let the world know what you think. Fay, just like the beer commercials, "YOU'VE SAID IT ALL"

[bobmc]

No Fay your not in DENIAL,

As usual your right on in your assessment!! Agree with you and share the frustration!! Last month I met this new Radiology onc. and he tells me he would have never found my brain mets cause he only does x-rays as follow- up for lung cancer. I say with a 5 year survival of a dismal 15% don't you think you should do more ????, Didn't get an answer and havn't seen him since but MSKCC did get my opinion card of there interview process???

So Yes understand, and must compliment you on how well you put this together. I'd also suggest that may want to take the time to send a letter to ASCO or the NCI. These are things that need to be brought to there attention. I'm gonna PM you some inf. on NCI CARRA application , I'm presently looking at it. There looking for Lung Cancer Advocates.

You know your one of my hero's

God Bless and be well

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack

PET taken 1/5 - hot spot in mediastinum May be cancer??

"Absolutely insist on enjoying life toda

[Andrea]

Fay,

Very inspring and well said!!!!!!!!!!!!!! FIGHT FIGHT FIGHT!

Thank you for making me want to fight even harder for my mom!

Love,

Andrea

[karenl]

Fay

All I can say is "ditto" what everyone else has said.

You are a true inspiration - I love your spirit, and always look for your posts. You help me to believe that this is a fight my mum can, and will, win.

Wishing you strength to continue the battle!!

Karen

[Snowflake]

Fay,

Damn straight! Very articulate, very accurate BS detector, as well.

Hanging right in there with you,

Becky

[Connie B]

HEY FAY!

WAY TO GO GIRL!! You said a MOUTH FULL! There isn't anything I can say that someone else here or yourself hasn't already said. I guess from my undstanding of living with lung cancer is, "Some people just don't get it"! They just don't understand. And I guess to be honest with you, I'm glad they don't understand, otherwise they would be in the same shoes we are in.

I never say NEVER when it comes to fighting this disease. I DO however say, BUYER BE WARE! Like anything, there are JACK-ASSES in this world that would LOVE to take advantage of sick people, soooo we have to watch our step. How sad is that????

Keep up the fight my friend!!!

[RAY A]

RAY A <<<

[Remembering Dave]

Beautiful Fay. I have said many times-fight, fight, fight.

David C