 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Prostate Cancer / August 2003my meeting with bob dole and observations in general
hi folks - both the wife and i went to the lunch with bob dole. she really enjoyed it. at first, she didn't want to go. she's a quiet type. the news media was all over the place and i have met the MC of the lunch many times before. he is an anchor news person for the local tv station. when we talk, it is more along the carefree and off the cuff, than stressful, as watch what you say. so, that helped the wife get over being her nervousness. when bob dole came in, he went around to the tables which were only about ten and met each individual personally. he said was surprised with my rate of recovery, but didn't go into his side of recovery issues. we took some personal pictures as well as professional pictures. he wanted the wife in the middle and said we could be the book ends. i was surprised by how tall he is. i mean given his age and he still has the square shoulder look. i was able to discuss some issues with him, but not in depth as i wanted. let's face it, he's a very popular person and he's trying to please everyone in a very short time frame. they did have a short presentation by a phd from Indiana University, but i don't know if the doctor was a medical type. the way he presented the facts and issues would have scared off a lot of men with prostate cancer. here's an example, he went into a study of men who have prostate cancer and said that there were two main statements that the men in the group were saying. statement 1 - my sex life is gone. i am devastated forever. statement 2 - we've been married for 36 years. we have found ways to compensate and still love each other very much. then he gave facts that they had found as a result of the study. prostate cancer is a complicated disease. 64% of the men are very concerned about their sexual function after having treatment. 72% of the men are distressed about their sexual function after having treatment. 36% of the women were concerned about their husband's sexual function after treatment. he stated that there wasn't much difference between sexual function between patients who had surgery and radiation. 18% for surgery, 19% for radiation. that there is no doubt that sexual function is a big issue in prostate cancer. and that we need to do more research into this area. and then he went on to talk about the quality of life after prostate cancer. well, to open the discussion up with facts like what i just told you, really makes you want to just jump up and get treatment if you just found out you have cancer - right? he did try to put the spin on all this by saying that after a year, your life is pretty well back to normal and the quality of life is good. after hearing all this, i realized that this newsgroup has far more knowledge than most of the studies they have ran. after his presentation bob dole talked about the quality of life the doctor had stated. "i got prostate cancer in 1992, ran for president in 1996 and got defeated, so i don't know if my quality of life is better. it did bring a laugh. after lunch, he was going to give a presentation on prostate cancer. outside the area of the auditorium, various agencies had information available. as i strolled by the booths, it was interesting to note that not one of them were really pushing awareness. they were pushing support. and when i ask about what they are doing for the awareness part, they kinda, woulda, coulda, shoulda, gave an answer - if you know what i mean. for example, their handouts pointed out that african american men are more prone for prostate cancer, but when i ask them what are they doing to educate the men, they gave me a blank answer. i ask them point blank. - do you or have you gone to the leaders of the african american community with this - no. - do you or have you gone to the african american churches of worship to educate the leaders so they can get the word out? - no. - i said, you are saying right here that this group of men is more prone and yet nothing is being done. - no answer, but they agreed it should be done. i finally said, " you know, what it looks like, is that most of the groups represented here are preaching to choir." the ones who have the prostate cancer, you are offering support, but how is this offering awareness? again, no answer. so, these were my observations. am i off in them? here's the mission for the group if you want to help make things count. give me suggestions - good, bad, indifferent - and i will put together a proposal back to the bob dole group and they will tell me if it will fly and maybe which direction to get funding. there seems to be plenty of support agencies, but not much in the awareness part. i know that if a person believes in the cause and i do in this one, things can happen. look at phoenix 5, because one person can make a difference. ~ curtis knowledge is power - growing old is mandatory - growing wise is optional I guess it's common for strands of personal issues to run through and sometimes take over relationships. Rudy Guiliani recently came to town and I had an occasion to be with him. He paid me typically cordial notice; just another of a thousand of nameless faces he has met and will meet. But, the NYPD detective (NYPD still protects him), with whom I had recently taken to dinner at Skyline Chili (big Cincinnati name), told him that I had prostate cancer. Well, then it was like old home week. He was late to his speech because of it, a rarity among Republicans. Point is, we are all men, we all put on our pants on leg at a time, and when struck at our human vulnarabilities, we realize this moreso than other times.  SignatureSteve Kramer PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HT 07/21/2003 @ 48 > > hi folks - both the wife and i went to the lunch with bob dole. she [quoted text clipped - 121 lines] > > knowledge is power - growing old is mandatory - growing wise is optional Hello Curtis....glad you are back and was able to get a glimpse of what is not bein done when it comes to disease awareness outside of the African American Community....in Riverside California Press-Enterprise newspaper this morning, is a discussion on the major issues in ONE local community: "nationally inadequate access to health care for miorities, especially blacks, is a serious issue; it crosses socioeconomic strata and is an expanding health care crsis with no impending resolve. Blacks are dying daily from chronic diseases that are preventable"...a local organazatin, The African American Health Initiative has accepted the challenge to do something about this problem of poor access to quality health care for blacks....they are committed to working with black communities to find real slutions to fixing the gaps that exist in providing quality care....they are motivated to work with black communities because they are health care workers and community leaders who have dedicated themselves to a betterment of the population.....the plan is to identify all current prevention and treatment services, programs and providers who deliver any type of care in the community related to heart disease, HBP, prostate/breast cancers and hiv/aids.....Loma Linda University did a study and discovered that 40% of the men had not been given a pc screening and 71.4% reported the doctor HAD NOT discussed discussed the benefits of screening or early detection.....the goals of the AAHI are to make recommendations to improve preventive and treatment services provided by hospitals, clinics, doctors, County Health Department and other health care providers.....just think, this is how it is in one small community. Keith Lundy/So. California 40 Proton Beam Radiation Treatments Loma Linda Univ.Med Ctr..3/03-5/03 PALMER_ENT@webtv.net (c palmer) wrote in message > i finally said, " you know, what it looks like, is that most of the > groups represented here are preaching to choir." > > the ones who have the prostate cancer, you are offering support, but how > is this offering awareness? again, no answer. There are plenty of diseases out there beyond we all have passion about. Focusing in on one disease is silly. What men and women already know is that they should go to a doctor for regular checkups. That is what most of us did, we were diagnosed with a particular disease but we could just as well have been afflicted with something else or nothing at all. Focusing for awareness of one disease is myopic. Most humans require medical attention sooner or later. This is not news. Those wise enough to seek a doctor's council every 6-months or 12-months will surely enjoy better health than those who procrastinate or think they're invincible. If you wish to become a crusader then crusade for regular checkups with a physician, anything more specific than that misses the point of promoting general health. If you contract a certain disease you focus on it. But trying to force John Doe Public to focus in on some specific disease is stupid. This is why the folks you meet and drill with *your message*, look at you like you're smok'in bad weed. Pick any particual disease you wish ... then pick a person at random. The person you pick will likely die of something else ~ does this make any sense to you? I disagree. If you have the resources to overwhelm the objective, yes you might try that. If not, you go after the biggest piece that you have a decent shot at. If you tell a man he should see a doc now and then, he will slough it off. If you tell him there is a lot of things he might find, he will slough it off. If you tell him he is going to get prostate cancer sometime in his life and the only thing that can save him is a simple blood test, you got a chacne. SignatureSteve Kramer PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HT 07/21/2003 @ 48 > PALMER_ENT@webtv.net (c palmer) wrote in message > [quoted text clipped - 29 lines] > The person you pick will likely die of something else ~ does this make > any sense to you? response to ehcorp1 - since you didn't sign your sign, i'll address you as your email addy. there are three things that you fail to understand if you are a regular here. 1. you said quote, " if you want to be a crusader then crusade for regular check ups with a physician. my response is that is exactly what we say and that is exactly what the folks here talk about is our check ups and the results of our check ups. we strongly encourage people to get check ups. where else does everyone get excited about detectable psa? 2. you said quote, "focusing in on one disease is silly" my response is - how so? why don't you sell your response to jerry lewis on his labor day cause? why don't you sell your response to the american cancer society? why don't you sell your response to the american heart organization? why don't you go tell them that "focusing in on their one disease is silly" 3. you said, "pick any particular disease you wish.. then pick a person at random. the person you pick will likely die of something else - does this make any sense to you? my response to you is this. you are borne with a prostate just because you are male. you have a strong chance, especially if family member has prostate cancer, to come down with it. it has a characteristic of been cancerous when a man is in his 60's. now, my question back to you is this name me a disease that has this much predictability and you choose not to do anything about it and let it kill you because you think focusing on this is silly. i'm just curious about something. you didn't give your age, but i really wonder if you truly believe that your doctor is a miracle person, that knows all the different diseases that could plague your body and give you direction to the cure. then you have a lot more faith in the health care system than i do. let me guess, you don't belong to an HMO. ~ curtis knowledge is power - growing old is mandatory - growing wise is optional PALMER_ENT@webtv.net (c palmer) wrote in message > i'm just curious about something. you didn't give your age, but i > really wonder if you truly believe that your doctor is a miracle person, > that knows all the different diseases that could plague your body and > give you direction to the cure. then you have a lot more faith in the > health care system than i do. let me guess, you don't belong to an HMO. "The beginning of thought is in disagreement, both with others and with ourselves." ~ Eric Hoffer This 56-year old won't apologize for causing a little debate here. Yes I'm a HMO dude like many others. First diagnosed with rising PSA 4-years ago. Referred to geriatric urologist that took first biopsy. Only 6-core samples, negative results, asked physician to refer another urologist. This next urologist was a cocky rooster that saw me every 6-months and sent me for ultrasound guided biopsy twice more (both 6-core sample). Third biopsy was positive. Go in for the big consultation, our eyes meet: "This is actually good news" he says. I'm thinking that he must be some sort of aluminum siding contractor in disguise. We talk for a little over one hour. He gives unsatisfactory answers to many questions. He does not believe in nerve sparing. At this point I've had two learning disabled urologists and one disease ... so off on the quest of finding a competent doctor I go. This is not easy. Doctors are cocky and arrogant yet they keep zero records. There is no easy way to confirm either their record or experience other than what they tell you. So I find someone who works in the medical field that knows some of the players. This person asks for referrals in my behalf. I take the short list and call patients. End up with a team of two that operate together. The whole operation thing was a nightmare but here I am still standing. So in the last analysis this disease is complicated as is any disease. Doctors operate their businesses as if they're all construction contractors and they disseminate James Carville *spin* to attract $$$ business $$$. The best writing on the subject to my mind was what Intel's Andy Grove wrote back in the 1990s when he contracted the disease. He was very critical of the whole medical system. Grove is an extremely analytical fellow but his criticism changed nothing. In the end, life is a test. Survival requires critical thinking and a realization that those we employ to help us almost always have selfish motives. This newsgroup is valuable because real people with real experience gather in support of one another. On average, the collective questions/answers given here easily rival what gets dispensed at many doctor's offices. Bye bye. > PALMER_ENT@webtv.net (c palmer) wrote in message > [quoted text clipped - 49 lines] > > Bye bye. You should have went to my doctor first, he usually takes 18 to 20 samples. Sorry, but I'm not as critical of doctors as you are. In fact I feel lucky to be alive with such good medical care as we have today. I for one don't yern for the good old days as far as medicine goes. My neighbor across the street from me has a brother who had liver failure. He was just given a new lease on life a week ago with a liver transplant. He received one half of a donated liver. The other half went to another patient. My neighbor said the doctor told her in the near future they will be able to divide a liver 8 times to help eight people with one donated liver. Dale J. SignatureE-mail: dalej2@mac.com hi ehcorp1 - it definitely sounds like you have been treated by a bunch of people who were mechanics and doing doctoring on the side. i can see why you can get an attitude like this real quick. 4 years of trusting the medical profession and you are the one who bears the burden with the result. all of this is even more reason to get the word out. to stop what happen to you. so the next person who world falls apart because he is told he has pca today won't have to be left to chance. you talk in general about how it came to pass, on how they were able to find the pca, but what did they do to you that made your treatment a nightmare? this is the information we need to get out to others. as to myself, i can't speak for others, i do agree with your last paragraph. doctors are no different than anyone else. they put their leg in their pants, one at a time. they want a nice home and a car and there is nothing wrong with that. it is just great when you find a doctor who enjoys helping others and can get paid for it that you find the best doctors. the ones who are in it for the money only, i have met - like you - you have to watch out for or you will be the product of their work. you do give a lot of thought about the person who is going to open you up and affect your life forever, whether it is open heart surgery, or an RP. but remember this - do you know what you called the person who graduated last in his class? answer - doctor. i wish you the best on your path where ever it takes you. mine is taking me to do what i can to make people aware of what prostate cancer can do to their loved ones or themselves. best of luck ~ curtis knowledge is power - growing old is mandatory - growing wise is optional > find the pca, but what did they do to you that made your treatment a > nightmare? Sorry, didn't mean to suggest that I had it worse than others. Some wish to put a happy-face spin on treatment meanwhile stark candor is another option. Please do not make it sound worse than it, the treatment, is. Just for the sake of those still waiting to undergo treatment. I had RRP, was up walking, slowly and not far of course, less than 24 hours after they wheeled me out of the O/R. I went home the next day. The incision has never hurt, it itched and the staples were ugly, and I never really had "pain" in my abdomen. Soreness yes, pain no. The part that bothered me the worse was the soreness and tenderness in the peritoneum (anus to the testicles). From what I have heard here I was the exception on this one. Most of the others never experienced that problem. I was also lucky in joining Curtis, and a couple others, in having pain when the catheter was removed. The biopsy was unpleasant, but not painful. Wearing the catheter is sure no fun, but it again was a question of discomfort, it was not painful. I hope what I reported was closer to "fact" than a sales pitch for RRP (we have been accused of that before). I was never in any real pain, that is just the plain truth. I had knee surgery when I was younger. That f.cker hurt, so I know the difference. I know the level of discomfort is different for everyone, and we all know all surgeons are not created equal, etc. I just did not want someone out there trying to make a treatment decision, or waiting for the treatment date, to be unnecessarily stressed thinking that he was about to go through hell. If your experience was different, please be more specific so people know what you are referring to, and so others can take that into consideration or be able to ask their doctors about whatever it may be. The idea is to be informed and to be able to deal with whatever issues that can be anticipated. What I really love about this medium of communication is that my wife cannot interrupt me and I always get to have my say. Have a good day to all. Thank you. David S. > > find the pca, but what did they do to you that made your treatment a > > nightmare? > > Sorry, didn't mean to suggest that I had it worse than others. Some > wish to put a happy-face spin on treatment meanwhile stark candor is > another option. > Please do not make it sound worse than it, the treatment, is. Honestly, I almost never mention the ball clamps. SignatureSteve Kramer PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HT 07/21/2003 @ 48 You can't believe everything you read. Somebody here told me the student nurses would come in and massage what I had that was sore. They were a no show! > > Please do not make it sound worse than it, the treatment, is. > > Honestly, I almost never mention the ball clamps. Really! They came to my room every day for 8 days. Even gave me a massage for the road. The only time they take off is for Christmas and their big convention the first week of August. SignatureSteve Kramer PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HT 07/21/2003 @ 48 > You can't believe everything you read. Somebody here told me the > student nurses would come in and massage what I had that was sore. [quoted text clipped - 3 lines] > > > > Honestly, I almost never mention the ball clamps. "David S." <DDETCHEMENDY@nc.rr.com> wrote in message > Please do not make it sound worse than it, the treatment, is. Just for > the sake of those still waiting to undergo treatment. Ok ... I get it. Let's *cook* the books, otherwise our ENRON stockholders may run out the door. Also let's embellish the "weapons of mass distruction" stories as to make sure the american public goes along with invasion plans. Oh, and don't forget to tell the firemen cleaning out the Twin Towers hole that the air may seem foul but it is really nice & clean. Everyone loves happy stories. When *stories* turn out to be patronized garbage, folks taking offense are just being negative. Or ... or just maybe a few critical-thinking folks on this planet are a little tired of sweet sticky syrup being poured on their heads time and time again. This is my last post in this newsgroup; some of us do better as read-only participants. Culpability for messing up the sugar/syrup equilibrium that some folks need to feel sufficiently (make that *artificially*) happy is too great a burden. |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.