#6768 02-01-2006 04:16 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | I suppose that by now most everyone has heard of the wife of Martin Luther King Jr. passing away in the last day, ovarian cancer. It has been coming for some time, though she has been active right up to the end. The part of the story that I found interesting, (not that she did not leave an extraordinary life and many aspects of it are interesting and have helped continue her husband
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#6769 02-02-2006 11:27 AM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2004 Posts: 76 | Kind of like chasing down the "Blue Butterfly" - a heart warming movie, but nevertheless, a sad ending - the reason to go to Mexico may have been purely having Hope, which is something we all cherish. Some things are best to try, some to just sit back & wonder. Maria
01/04 SCC of tongue base, T1N0M0 03/04 Partial glossectomy 04/04 Rad 12/04 Throidectomy(follicular cancer)
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#6770 02-02-2006 01:11 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | False hope does not make your life better. Unrealistic expectations do not either. That doesn't mean I am about to go quietly into the night. I will fight the end with all the tools available including very early clinical trial drugs, RFA of big lesions to buy time, and surgical ablation to reduce tumor mass as long as there is something else out there in the drug pipeline that is showing promise. Inevitably, I will reach a point where the quality of life vs. the continued fight no longer balance out. When that time comes, and I will have consulted with many doctors to determine that the resources and options have run out. I will then work toward acceptance of the end that we all, whether though cancer or some other mechanism, will come to.
Then I will work on closure with those close to me as a productive manner to spend my time, and finally coming to emotional terms and peace in the acceptance of my end. I will not be draining my wife's bank account, on some flight to some third world medical facility, chasing what is false hope.
We do a poor job in the US of embracing the true nature of existence, and that is that it is finite. We used to bring our very old family members into our homes where they weakened and died in the presence of their loved ones and families including the children. Now we shuffle them off to nursing homes (a multi-billion dollar industry) in droves. If, when you are a child, you are exposed to death as a normal part of your own existence, you realize that for all the perceived invulnerability that comes with youth, the reality of how we all end is not to be denied. From this realization, I believe comes a concept of living each day to the fullest, making and achieving goals, maximizing the interpersonal relationships that we are lucky enough to enjoy, giving some of ourselves to the service of others, and in general not spending our lives drifting as froth on the wake of life. Hope is good to a point when it is balanced by a realistic understanding of the situation; false hope wastes precious moments in time and other opportunities to emotionally complete our circle.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#6771 02-02-2006 02:09 PM | Joined: Nov 2005 Posts: 79 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Nov 2005 Posts: 79 | Brian - sometimes, and this is a compliment, your writing sounds poetic. Very insightful and considered and, ultimately, calm-inducing. I showed John and he really liked reading your last post.
Mary
Caregiver for John SCC left tonsil Stage III/IV dx Sept 05, tx started Oct 21/05 -IMRT 35, cisplatin 3 X 100mg/m2;completed Dec08/05.
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#6772 02-02-2006 04:54 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Yes, that's a wonderful post, Brian. I agree false hope is damaging. I personally know of two stories where someone with advanced cancer, blindly pursuing anything advertised as a cure, left their young family (in one case) and their business as well (in another case) bankrupt from the chase, and, as you said with Coretta King died just about when the doctors had predicted anyway. Thats' certainly not the legacy I'd want to leave to my loved ones at the end.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#6773 02-02-2006 05:44 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | I always loved watching "Peter Pan" and I thought Pixie Dust was pretty neat. I also remember the "laying out" of my Grandfather's casket on Grandmother's dining room table as pretty impressive, as were all the people who came to the house to say goodbye. Now that I am 65 yrs. plus, I appreciate more each day the old-gentle-and matter of fact way our forebearers dealt with death. It was a part of life. My daughter called me about 6 pm tonite, sobbing and devastated, because a close friend of her's died instantly of an anurism this morning [at age 35]. There aren't many words of comfort for that. But that is what it is. Life and death go hand and hand. It pretty much boils down to how we are going to deal with it.
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#6774 02-02-2006 08:18 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | The truth is that we all die, however not all of us truly live. Fear is powerful thing, and it gets in the way (in my own life as well) of living in the present. How much of our time is sspent worrying about the future? I don't mean you shouldn't plan, organize, and develop strategies, but this is way different than worrying about that which we cannot control. How much time do we spend reliving, or regretting things in our past, or still carrying anger or frustration over that which has past? Earlier in my life I would have to say too much time. It is really hard to live in the moment. But the moment is in reality the only thing that we actually have... the past is gone, the future is promised to no one. While it did take cancer to bring my perspective and thought processes around, this paradigm shift in how I TRY to live, has made me happier, even in times of adversity, more productive in my daily endeavors, and closer to the people I care about because I am really interested, and paying attention to them...right now. This is probably to some, developing too much of the ring of some kind of 'new age
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#6775 02-03-2006 09:14 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Brian, to me it's "new age" belief systems that are responsible for beliefs in herbal cures because they're "natural", etc.
Yours sounds like buddhism to me. A very old belief system actually...
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#6776 02-06-2006 06:39 PM | Joined: Nov 2005 Posts: 306 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2005 Posts: 306 | The 'slasher' email marketers just sent me an ad for a complete cure for cancer. Its from the ocean algae. This fellow started eating it and his cancer vanished. Now we wants to share it with ME. Imagine that.
Its totally natural you know. From the sea. Just like we are from the sea. Its from nature so its totally safe! It re-establishes the body's Ph balance - which as we all know is the REAL cause of cancer. Eat algae = tumors gone. Its a miracle. He wants to share it with US. Praise be. There is just a "nominal" fee for the actual processing costs. No profit is made of course.
I thought you would all like to know that your BIG problem is your Ph balance. Buy some totally natural, very pricey, green slime today! (let me know how that works out for you.....)
Be smart. Tom
SCC BOT, mets to neck, T4. From 3/03: 10wks daily multi-drug chemo, Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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#6777 02-07-2006 12:50 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | On a slightly more serious note, I know several people who swear that blue-green algae is incredibly healthy and good for youre immune system (though they don't claim it cures cancer). The stuff tastes vile but since I'm pouring things down my tube anyway, I was adding a bunch of blue-green algea powder mixed with water once a day as well figuring what the heck, it coudn't hurt--and I sure wasn't getting salad or anything else fresh and green so maybe this would compensate.
But my sister, who works for the EPA, strongly suggested that wasn't such a wise idea. Apparently there's lots of toxic stuff in that lovely natural green algea. Stuff that an be really toxic. And since it's a food supplement, that isn't regulated by anyone. Just an FYI.
As Tom said above "be smart" ......
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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