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Boom!


DeanCarl

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Did ya'll hear it? That loud noise comming from San Diego about a quarter to noon? That was me going off (again) at the Veteran's Administration Medical Center in La Jolla.

A little background. After finding out my cancer was inoperable I started doing a bunch of research and soul searching trying to decide which direction I wanted to go with this. After a lot of late night discussions with my wife, many, MANY hours on the internet and many discussions with about as many kinds of doctors as you can imagine I made my choice. That choice was to concentrate on quality of life rather than length of life. I know that is a different choice than most of you here have made and I hope ya'll understand that each of us has our own personal reasons for the choices we make.

Anyway, with the full support of my wife, my friends and ALL BUT ONE of my doctors I made the decision that, from that poiint on, my care would be pallitive in nature and not cureative. The radioncologist, my primary doctor, my social worker, my friends and my wife all agreed and are all working toward the goal of making whatever time I have left in this world more comfortable and enjoyable.

Notice the "ALL BUT ONE" in the paragraph above. That "ONE" is my medical oncologist. I called the hemo/oncology department a couple of weeks ago to inform him of my decision. I ended up talking to his secretary who said she'd give him the message. Instead of support I got argument. I had a message on my answering machine later that day where he kept going on and on about what this chemo could do and what that chemo could do. At the end of the message he said he didn't normaly answer phone calls himself and he'd make an appointment for the following week to see him at the hemo/oncoloty clinic. I called the department back the same day to let them know I would NOT be able to make an appointment for that week (Thanksgiving week). They said OK and made the appointment for today (Dec 2nd). A few days later I get one of those automated appointment reminders telling me I had an appointment for the 25th of November!!!! (the fuse is starting to burn at this point. :x ). I call back AGAIN and explane AGAIN that I can NOT make that appointment. The secretary says Dr. Schwab wants to see me on that day. I tell here he's NOT GOING to see me on that day. The appointment finally get's changed to 10:30am on the 2nd (today).

So, like a good little boy, I show up a half hour early for my appointment, sign in, sit down and wait ... and wait ... and wait. At 11:30 I see Dr. Schwab in the doorway to the clinic and walk up to find out how much longer. "5 minutes", he says. "OK", I say. 20 minutes later the fuse burned all the way down. BOOOOM!! I walk up to the door of the clinic and let the nurse there know that what is going on is completely unacceptable and I'm gone! Remember folks, I didn't want this appointment in the first place. I'd allready decided on a course of treatment and it does NOT include aggressive chemotherapy. I was willing to listen to what he had to say, but I was not and am not willing to be treated with disrespect by ANYBODY! I went streight from there to the patient advocet's office and filed a complaint. She said she'd get Dr. Schwab to call me. I'll believe that when I hear his voice on the phone.

This doctor has NOT listened to me from day one. He has ignored my desires, he's been vague and unresponsive when questioned. He's made arbitrary decisions about my treatment (such as appointment days and times) with NO regard to my situation. He's a young, bushy tailed "fellow" just learning what the REAL medical world is all about and doesn't seem to realize there is a living, breathing, THINKING human being wrapped around that cancer he's so eager to kill.

Now, I don't have the luxury of going to a different medical center. The VA is all I have. I do know this, if I do end up wanting chemo later on you can bet dollars to doughnuts I'll have a different doctor.

Whew!!! Enough on this for now.

Dean

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Hi Dean...

WOW!! Must have been a very hard decision, but if it feels right to you and your wife, then that is all that really matters!

I want to send my very best wishes for the road ahead and to let you know I will continue to include you in all my prayers. Also, I would really like it Dean if you could keep me informed of your progress. I will be rooting for you big time!! (Hope that isn't too presumptious of me to ask that..if it is..then just disregard :-)..

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Hi Dean,

I COMMEND your decision to make your own choices. GOOD FOR YOU my FRIEND!! It's NOT an easy choice or an easy decision to make, but one that some times in our life and our fight for life, that we get to a point where we know when to let go and let God! NOT AN EASY DECISION, but rightfully YOURS TO MAKE!! GOD BLESS you and I hope you live a very long time without treatments. (IT COULD HAPPEN!) :wink: ENJOY your life my friend. We are all here on borrowed time. I admire you!

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Dean,

I admire what you did. Sometimes these doctors just don't want to listen. They seem to want to do what THEY think is good for you and to he** with what you want. You stood up to that doctor and just maybe he'll get the message. You have to do what is right for you. As ConnieB said, you could very easily beat this without medical treatment. I am praying for you each day that you do beat it, God be with you. By his stripes you are healed. Just believe. Please keep us posted because we do care about you....

God Bless

Karen

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Thanks guys, I appreciate the support, believe me.

I just got a call from the chief oncologist at the hospital. At 8:15pm no less! Guess something I did or said got their attention. (hmmm... wonder if that little comment about calling my congressman had any effect? :)) After talking with her for a few minutes she suddenly says, "Oh, I just saw that Dr. Seagren (my radio-oncologest) has ordered a very short set of radiation treatments for you as a pallitive measure. We wouldn't be combining chemo with such a short set anyway." AAAAAARGH!!!!!! Did not my medical oncologist READ my records at ALL??????? I'd already told them that is what was happening! This whole screwed up morning could have been avoided.

Anyway, all is cleared up now. No more fights over who my lead doctor is. Everybody is reading off the same page.

And yes, the decision I made was hard. I had to fight the idea that I was somehow "giving up". But I'm realy not. I'm not giving up on living one bit! For many years now HOW I live has been much more important to me than HOW LONG I live.

As far as "beating" this goes: This cancer may kill me ... it will NEVER "beat" me!

Dean

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Your outlook and your attitude is fantastic. I don't think you're "giving up" either. You are in control right now, not your cancer, and although not everyone chooses this path, it may very well be what is the absolute best one for you!

On a side-note. I have a friend named Julie who has brain cancer. She was told in late 98 that she would not live long. She had two surgeries, multiple chemotherapies and radiation treatments, only to have the tumors in her brain progress... I've seen her so ill she looked two steps away from death...and this girl is only in her mid-twenties... Finally everyone told her family to take her home and prepare to die....no more could be done. She was SO SO ill.. and as the days passed...without treatment....she got better... :shock:

No more wheelchair...no more walker....hair has grown in and her words no longer slur.... Don't know what her medical "prognosis" is now...it isn't great by any stretch...but she looks better than ever...and having the time of her life one single moment at a time. She just came back from a trip to Florida! She still has brain cancer, but she has lived three years longer than anyone ever thought and she is still going...without treatment.

Miracles happen to us everyday. She and my dad shared a bond. They were actually together at our family BBQ - both in wheelchairs- and she looked so much worse than he did. He was actually looking like he was getting better for a few months! .... Then ironically, he was the one to pass away first. I saw her walk on her own for the first time into the hospital that day. She kissed my dad on the head- She always called him "grandpa" and told him she would see him soon. She wasn't afraid of death, she told us.

She's been walking on her own ever since that September morning my daddy died. I think she took away with her his determination that day. She is making it! She is alive on sheer will and prayer.

Oh my...I don't know how I got off on all of this. Thank you for letting me share. I was meant to commend you on your fighting spirit and great positive attitude. Keep it up...it will be what carries you thru this journey.

Good Bless YOU.

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Dean ----

I admire your courage to stand by your convictions-and do what you feel is right for you---I always said that I would do what you are doing (not get chemo) but one never knows until it happens to you.

I agree with you regarding some people I have encountered in my journey---some of the rudest people I have sometimes encountered is the support staff---(receptionists, etc.) They act like they are doing you a favor and bark orders left and right. When I was calling for an oncologist consultation---I called to make an appointment and this receptionist was extremely rude snapping at me that you have to bring your pictures and all your write-ups---I was not sure where they all were but I know most were at my regualar Drs. they could have called for them to fax--but all she did was bark orders--I said forget it -I hung up on her and got another onc---

I also tried to get an appointment for a mammogram---I could not make the appointment she was giving me--so she said "we are doing you a favor to fit you in, you work around our schedule-not the other way around---!!!!--- I wonder just who is paying here?

and of course your time is not valuable to them----

I cannot say all are like that, and I have met some really nice caring people---

you are not "giving up" you are choosing to live your life how you want to

regards to you

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Dean,

I think it is wonderful your family is standing behind you. When my dad was first diagnosed he decided he didnt want any traetment because he wanted quality instead of quanity as well. My mom called us heartbroken and scared. We all rushed over their house to talk him into at least just trying it. We thought if he had a chance he had to take it. We had no clue about Lung cancer or any other cancer, this was our first experience with it so we took what the doctors said as Gospel. We were so scared.

Well, my precious dad agreed after many hours of persuaded him. He did it for his family because its what we wanted and he would do anything for his family. I can still see his face when he said "ok I'll do it" he was so apprehensive.

I live with guilt every day because I talked him into treatment that brought his quality of life way down, and eventually took his life. I wish I would have told him I was sorry, but I thought right until the end he would get out of that bed and be ok. I wish I was more informed when I was trying to persuade him.

My point is Dean, you have to do what is right for you. I am not saying treatment doesnt work because I have seen it work miracles for all the survivors here. Follow your heart and be at peace with your decision, it seems like you are. I admire you.

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Dean,

Hats off to you, sir!! :)

You know what you want. I am sorry you have such a hard time getting through to the medicos about your wishes.

I hope also, just to mention, that you have all the legal documentation ready just incase so should you be unable to speak (for example) that your wishes are stated LOUD AND CLEAR so no one can claim to "speak for you", which would include living will and DNR.

These are sad subjects to bring up, but I had them drawn up prior to surgery. You never know what's going to happen, and as former military, you should be familiar with the concept of cover your a$$.

The individuals I have known who have drawn the line and said no more have taught me a great deal about the dignity of the human spirit, and how unquenchable it is.

Ultimately, it is your decision to make, and it is ours to support you in your endeavor. Bless you, Dean Carl.

MaryAnn

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I think one of the hardest things for others to accept is that the person who has the cancer (or any other disease or disorder) gets to be the one to decide what he/she is going to do about it. I'm happy for you, Dean, that your wife and most of your care providers are accepting of your decision. As far as the Med Onc goes, well....he'll just have to meet his patient quota some other way. (he's a Fellow, right? Means he is a real physician, but going tthrough additional training in the field of Oncology, and he's supposed to see a certain number of patients)

Wishing you well,

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Hi Dean,

My Hats off to your decision. Peace, take care and God Bless.

Rich

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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 / That’s The Key

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With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free

http://www.alcase.org/education/publica ... reath.html

The Cancer Survival Toolbox / Free / From NCCS

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Clinical Trails Listing Service / Center Watch

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Lung Cancer In The News / GOOGLE

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The Wellness Community / National Cancer Support, Education And Support / Free

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Drug Information Online

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ALCASE / Alliance For Lung Cancer Advocacy, Support, Education

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Unites States / National Library Of Medicine

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Health Information / Medical Encyclopedia

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Google / Great Search Engine

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R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients

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American Cancer Society / No Matter Who You Are, We Can Help

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Cancer Information Service / NCI

http://www.cancer.gov

Cancer Research Center / A Cure For Cancer...

http://www.cancerresearchcenter.org

American Institute for Cancer Research; Nutrition Hotline / AICR

http://www.aicr.org

Cancer Hope Network / Cancer?

http://www.cancerhopenetwork.org

Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders

http://www.acor.org

Lung Cancer Information Library / Electronic Library Of Comprehensive Educational Materials On Cancer For Healthcare Professionals And Patients.

http://www.meds.com/lung/lunginfo.html

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