Cancer Survivors Thread

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Cancer Survivors Thread

Postby diane o'thirst » Mon Sep 26, 2005 9:49 pm

Didn't know where else to put this...apologies if someone else has started a thread with a similar intent. Mods, feel free to move or merge as ye see fit.

This thread is for Burners who have been diagnosed with and/or are survivors of cancer. Here's my own experience:

I was diagnosed with colon cancer early August. I didn't say anything here because I knew everyone was in high Playa gear-up mode and I didn't want to burden you with an announcement. I figured it could wait until after.

Present condition: Healing up nicely after surgery. I spent 4.5 days in the hospital here in Eugene; my doctors and nurses were, straight up, WONDERFUL. My night nurse is definitely Burner material and so is my OBGYN's nurse. Heck, I even think my surgeon would be a good fit.

Anyway, they took out my appendix, sigmoid colon, uterus-ovaries-tubes. Those last four were adhered together in a mass the size of a grapefruit. My surgeon's term was "impressive," if you can believe that!! The surgical wound hurts less than the slit they stuck the drainage catheter in, another believe it or not. There's going to be a killer scar on my belly, it kind of looks like a striking cobra. No, I'm not getting it tattooed! I've had quite enough sharp pointy things messing with my belly for one lifetime, thank you very much ;)

The staples come out tomorrow, and I meet with my oncologist the next day. We're in the second half of the war, they've descended with the swords and knives. They're pretty sure it's Stage 3 so that means chemo and radiation. I'm not sure when/how much, we find that out definitively on Wednesday.

Friends and family have been wonderful. I got a million offers of help with my horse as soon as I broke out the news at the barn. My horse has a new trainer and he's being well taken care of; I won't be able to play with him for a couple months yet, I have to let myself heal completely before I go into a locus as filthy as a barn.

But, I'm here — healing up, wearing my LiveSTRONG bracelet, and feeling better than I have in months. Let's hear some stories! Heck, while we're at it, how about organizing a gather on the Playa next year?
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Postby Badger » Mon Sep 26, 2005 10:00 pm

Paging Kinetic. White courtesy telephone please....
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Postby geekster » Mon Sep 26, 2005 11:59 pm

d o't ... my sincere best wishes for your recovery. Someone very close to me was dignosed with the same thing but only after it had spread. I wish you nothing but a continued and most successful recovery.

And hey, all you out there, if you have any history of colon cancer in your family and you are over 35, get your ass scoped (literally). If you have symptoms such as "pencil poop" get your ass (literally) to the doctor. My Dad had symptoms for a long time. He was a volunteer paramedic, he knew something was wrong, he didn't act on it soon enough.

Colon cancer is one of the most curable forms of cancer if caught in time, but it often doesn't present symptoms until it is too late. If you are over 45, get your ass scoped ANYWAY.
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Postby robotland » Tue Sep 27, 2005 7:21 am

DEFINITELY get checked, folks. D o'T, Best of Best on your recovery. I'm the tech responsible for making custom radiotherapy shielding here at the West Michigan Cancer Center, and see lots and lots of happy, recovering patients with your same condition. If attitude makes the difference, you're gonna be fine.
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Postby AntiM » Tue Sep 27, 2005 7:44 am

Last year I have the interesting experience of two different types of cancer, a colon carcinoid and breast cancer, but I blathered on about it enough in the past. Hell, I showed anyone who would hold still for three seconds my fresh scars last year! I was lucky, both cancers were caught at Stage One, I didn't even have chemo for either, and only local radiation for the BC.

I concur and add to the chorus: Get Checked!!!! A Poop-O-Scope ain't so bad (just the freakin' prep, ick). And while self-exams on your breasts are useful, don't think you can skip mammograms after 40. I never ever would have found my tumor on my own it was so small and so deep in the dense backwall tissue. My brother, two cousins (brother and sister), an uncle and a great-uncle all died from colon cancer within a few years of each other, although my uncle had even more advanced skin cancer than his colon cancer. I get so angry that no one in my family will talk about WHY we die; they spend more time gushing about how we'll meet again in heaven. ARGH! I had no idea that all these relatives had cancer until my brother died, THEN I started hearing, "Well, soandso died of that too." Again, ARGH!

Do'T is one hell of a fighter, I have every expectation of seeing her on playa, in tip-top condition. Thanks for starting this thread.
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Postby diane o'thirst » Tue Sep 27, 2005 10:00 am

I'll triple the "get your ass checked" point...more importantly, make sure you're getting a good doctor. I've had this trouble for years but nobody had the balls to say "Into GI and colonoscopy" until a month and a half ago. They all said "It's diverticulitis, here's some antibiotics."

When I was diagnosed I got hit with all my medical karma. I had anaemia on top of Stage 3 cancer and that's why we had the lag-time between diagnosis and treatment, I had to load up on iron to get strong enough to withstand the surgery. It was strange, throughout my life I've never been seriously sick. I guess the Disease Lords and Ladies were saving up for a big one...

Attitude is key. I never once thought, "Why me?" From the first, it was "Get the fuck out of me!" I called my tumours "The Mutineers" and showed them no end of mercilessness. It meant a few nightmares but now that they're gone I'm working on that.

I'll let you know what the oncologist had to say after my post-op meeting with him tomorrow.
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Postby AntiM » Tue Sep 27, 2005 12:25 pm

My surgeon nearly didn't biopsy the carcinoid because it resembled a lypoma, a fat cluster growth. Apparently the carcinoids rare, three people in a million get one, and mine was in an unusual location too. Of course he never told me it was a type of cancer, I found that tidbit out from my radiation oncologist. "Oh, yeah, that's a cancer, just not a common one ... and did you know you had 19 lymph nodes taken out?"

When it was time to repair the hernia from the first surgery, I went with the surgeon who'd worked on my breast rather than the colo-rectal guy. Communiaction and follow-up are essential, if nothing else, then for peace of mind.
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Kick cancer's ass!

Postby Cuddle Bunny » Tue Sep 27, 2005 1:33 pm

And keep sharing your story. You never know when your confidence and healing will help heal another life.

As an aside: Through my job I've received a copy of the LiveSTRONG book on CD. It's described thusly: "Survivors from all walks of life talk about what "living strong" in teh face of cancer means to them."

Three hours, three CDs, readers includeAlsion Fraser, Kristin Kilian and David Pittu.

Anybody interested? If you'd like to have it for yourself send me a PM with your mailing address and I'll send it to you. Otherwise ... if any of you have participated in or know of a cancer support group that would like to have it, give me a URL and I'll find an address.

(p.s. yes, I can just look up a number in the phone book, but thought I'd offer it up to fellow burners first).
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Postby diane o'thirst » Tue Sep 27, 2005 1:38 pm

I have the LiveSTRONG Survivorship Notebook. It's a big whonkin' yellow 3-ring binder, they send it to you for just the shipping. It's come in handy, but basically it's just a nicely laid-out printout of the website in a binder.
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Postby diane o'thirst » Thu Sep 29, 2005 1:03 pm

Met with the oncologist. Let's just say that what he said bust the dam. I spent yesterday afternoon crying.

In two weeks I have to go back to my surgeon and get what's called a Porta-catheter installed in my chest. After that, it's six months of fairly heavy chemo. They're not giving me the pump that hangs off the belt, we're going with pills because they can get those for free. I forget exactly which drugs I'm getting, the doctor gave me a cheat sheet but I haven't pulled it out of my binder yet. I'll probably do that this afternoon.

Today, I'm just taking it easy and cocooning, getting some rest and letting my guts heal up some more. I'm trying desperately not to fall back into the "I'm scared, the world's so big and mean, get back in that shell and hide!" self-trap that I used to get myself into. Tomorrow morning I go to see my radiologist, but my chemo oncologist is of the opinion I won't need radiation. Thank Ghod for small favours :roll:

Chemical Warfare starts in about two weeks.
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Postby Kinetic IV » Thu Sep 29, 2005 2:10 pm

Diane, the portacath may sound scary but it's wonderful once you get it in. I still have mine and it makes it so easy to adminster IV's or draw blood samples. It's a quick procedure to have put in, I was in and out in barely over an hour. And it's also barely noticeable, mine is on my right side below my collar bone and even with a V-neck t-shirt you really don't see it unless you're up close.

One thing about them you have to watch is the cleaning. I get help with mine, I go in every 4-6 weeks and have the nurse flush it out, I also have the supplies to do it at home if I need to. In time that should be the only hassle you'll have with it, otherwise it's a very welcome thing. It also makes the staff's job much easier when working with you and the less hassle and crankiness they have the better it is for you.
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Postby diane o'thirst » Thu Sep 29, 2005 6:06 pm

How does it feel? Say, does it affect hugs? How soon can you lay on it? Does it ever come out, or is this going to be a semi-intentional body mod, something you live with?

Trying not to look too much the neophyte here...
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Postby Kinetic IV » Thu Sep 29, 2005 7:35 pm

No, it doesn't affect hugs. Rabbi Dali Rick gave me one heck of a bear hug at the meet and greet and if I was going to have trouble that would have been the time...and it was no problem. When it was first put in I noticed it and there was an adjustment period but I've grown used to it and don't give it much thought now...but everyone's body reacts differently.
If I took my shirt off you would notice a small slightly raised circle area and that's about it. With a shirt on you don't see mine. It's just like getting a cut that requires a few stitches, you treat it with care until it heals up and you're fine after that. And yes it certainly can come out once you complete your treatments. Mine's still in for a couple of reasons and I've had it for about a year now. It hasn't kept me from doing things I want to do, I've went on a float trip where the kayak tipped over and I was completely submerged...so even in those conditions with it being under the skin there's nothing to worry about. When you shower you don't have to do anything special, you just take a shower like normal. You know it's there if you run your hand across it but that's the extent of it.

Again the biggest advantages of it are ease of use for administering IV's and drawing blood, and just less hassle for you. You're going to be tired and anything that can make things pass quicker or with less hassle is welcome.
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Postby Isotopia » Thu Sep 29, 2005 8:05 pm

With a shirt on you don't see mine.


With your shirt off I'm sure you won't see it either.

JPEGs??
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Postby Kinetic IV » Thu Sep 29, 2005 8:21 pm

Not for you Iso. I wanted to show you in person on the playa this year to shut your mouth and avoid any "photoshop" claims along the way. That didn't happen so I'm sorry. The answer is no.

If you want a rebuttal and full reason why I said no, it's on the blog.
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Postby Ivy » Thu Sep 29, 2005 9:04 pm

Say, does it affect hugs?


Apparently. PJ used to wear a "Thanks for Not Hugging" shirt in order to dissuade that.
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Postby Kinetic IV » Thu Sep 29, 2005 9:09 pm

It hasn't bothered me Ivy, nor did it bother my mother when she had hers either. Everyone is different.
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Enough Already!

Postby staple puller » Fri Sep 30, 2005 4:19 pm

I'm a cancer survivor. I've lost both of my parents and both of my in-laws to cancer. It's a horrible, horrible disease but the support of friends and family makes it somewhat bearable.

The extra-inning pissing contest going on between two of you in this and other threads is getting really boring and gets in the way of what could be a place of genuine help and support.

Yes, I am a sock. Yes my post count is 1. Feel free to rough me up in the usual way. I would expect nothing less.
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Postby theCryptofishist » Fri Sep 30, 2005 4:39 pm

staple puller
agree about the pissing contest. Long ugly history and they would do well to put each other on ignore since it only riles them up.

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Postby diane o'thirst » Fri Sep 30, 2005 4:43 pm

Yes, Kinetic and Iso, there's plenty of other threads to do the Duelists thing on. Let's try to keep this a haven.
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Enough Already

Postby staple puller » Fri Sep 30, 2005 5:01 pm

I won't reveal my secret identity just yet. I will say that I've been to BRC 7 years running. I've had my fill of the sniping, the egos, and especially the self appointed eRanger's venom. I'm a retired LEO. I've been exposed to the badge heavy many times. They scare the hell out of me.

Enough about that here.

I agree Diane, this needs to be a safe haven where those of us who share both the burner ideals and the dreaded Big C can come together. I know that right now it may seem like the end of your world. It doesn't need to be. Reach out. Don't be afraid to feel. Know that you are not alone. Communicate.
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Postby Kinetic IV » Fri Sep 30, 2005 5:59 pm

I was hoping this would be a sanctuary from the sniping and I apologize for being self-centered and replying with my ego and mouth overloading my derriere. I wish he would stop...and I thought less than 48 hours ago I had a commitment it would stop. But I was wrong. That's why his attacks left me shocked and I responded. But that's an excuse...and we don't need those either.

Mark this down, regardless of what he posts in this thread going forward, I won't respond to it in this thread anymore. I have a blog for that. This is a very serious subject, my mother had lymphoma, I have it, and my grandfather was diagnosed on Monday with a form of bone cancer which was suspected for a while. There are things that warrant creating a good story but this is certainly not one of those topics. This is an enemy our family has had to take on and 2 of us are in remission. It can definitely be taken on and beat back.

As for you staple puller, you won't have any problems with me, sock or no sock.
This can be a powerful thread...and I hope it becomes just that.
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Postby diane o'thirst » Fri Sep 30, 2005 7:34 pm

Moved, seconded, thirded. Let it be thus. Sanctuary. If you wouldn't say it in a hospital, don't say it here.

In the future — I'm sure it's been done already by several here (Iso made mine years ago). Wiseasses, trolls, go elsewhere. You will be Ignored. And it won't be as fun as the Observant One's Ignore list ;)

So. Onward.

I start radiation on Monday. They put me in the machine at 11:30 and scan my ass (literally), then I get some tattoos to add to the collection. My radiologist is great, he's a smart old guy who didn't talk down to me and actually complimented my present skin art :) I'll be in radiation 5 days a week starting 10/3 and going through 11/18, by my reckoning.

Chemo starts as soon as they get the drugs in and install my portacath (thanks KIV for the reassurances). The nice deal is that the pills will be for free. I keep thinking, "Yes, this is survivable."

<b>This is survivable</b>

Last night, I was having some trouble with the newly-reordered internal plumbing and guess what? My cat went into the other room and got my Mom. A pint-sized Lassie! "Granma, Diane fell down the well! Come quick!" Anyone who said cats are aloof and independent simply hasn't met my guy.
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Cancer Survivors Thread

Postby can't sit still » Fri Sep 30, 2005 8:22 pm

Diane, I try to keep current on medicine. There is a product that is very promising as far as colon cancer. It's naturopathic with no side effects. It's fairly cheap too. Avemar is the name. Here's one site that is about production but it gives some test background.
http://66.102.7.104/search?q=cache:VVe3 ... n&ie=UTF-8

Now THAT is one long URL. You can search on Avemar or fermented wheat germ. You probably already know that fermented soy is a MIRACLE product for stroke prevention,,, Nattokinase.
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Postby diane o'thirst » Fri Sep 30, 2005 9:55 pm

Thank you. I'll ask my chemotherapist about it.

Saccharamyces lactobacillus? Damn! I knew sourdough tasted great but now it has medicinal value? 8)
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Postby diane o'thirst » Thu Oct 13, 2005 9:38 pm

Note: The page on Avemar isn't there anymore.

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Postby can't sit still » Thu Oct 13, 2005 10:59 pm

Hi Diane, I'm having a lot of URLs disappear. I sent a URL on scalar energy to a friend in GB. 3 days later I tried to send the same url to a certain nobel lauriate in Cambridge,,,gone. Same with a URL I posted on global warming. Gone after 5 days.

Heres a site that sells avemar. There's not much info. I receive a few medical bulletins. One of them has a complete writeup. The guy who did the research singlehandedly,,,, ran out of money. He prayed for a patron to continue funding. A guy showed up the next dayand offered to underwrite the research. He thanked God and named the product avemar,,,slightly shortened for ave maria.
http://www.iridologyonline.com/iridolog ... ductID=446

This site lists studies.
http://www.avemarresearch.com/TOC.html

From what I've read in journals, it's extremely effective for coleorectal cancer. Also as a preventative for reoccurance.
I'm sure that your GE is competent, but it never hurts to do your own research. Google lists 38,000 pages for avemar. I subscribe to "Life Extension" magazine. They are a great resource.
I'm sure that I don't need to remind you that your life could be on the line. I imagine they were clear about the odds.
I wish you all the luck in the world.
Hugs, Dan
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Postby gawul » Sat Oct 15, 2005 6:31 am

so many people are affected by cancer that it just blows me away. i have this unrealistic idea that it's not just a disease, but an evil entity. i had skin cancer removed from my face 2 years ago, and my sister was diagnosed with thyroid cancer this week. it seems to be something that has gotten to a lot of our family members.

to all of you who are tortured with this disease, i send positive healing energy
and wish you all the best

it IS beatable, never forget that

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Postby heart » Wed Oct 19, 2005 9:41 pm

at the ricks of sounding like an uneducated fool, which perhaps i am, i shall share my thoughts. allopathic medicine claims that once the body becomes a host to a parasites thereare no ways to remove them. Doctors are currently discovering that there are no cases of cancer without high levels of parasites bacteria or yeast, or so came the claim from my teacher/doctor. There is, and have been ways to deal with parasites for centuries. anyone whom is dealing with one of these issues, or is afraid they might someday have to should do some detoxing and cleansing, which is difficult work and takes time, but is so very worth it, imoa.
with love to all ~
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Postby Mozy bonz » Wed Oct 19, 2005 10:14 pm

thank you for this Sanctuary. Peace and love to you all.
My mother is going though this now
thank you heart for hitting this thread It showed me how to get here. 21 years for my mother......... new type this time in her liver.
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