Cancer Survivors Thread

No matter your skills or interests, there's a way for you to participate in the creation and manifestation of Black Rock City, both at the event and year-round.

Postby diane o'thirst » Mon Jan 30, 2006 9:57 pm

It looks pretty good...that I'm going back in for another deep scoping later this week.

Yippee yi fuckin' yo.

The reason they're fast-tracking me is because I've never really stopped bleeding, and I'm getting hit with diarrhea attacks on a semi-regular basis. It might be the chemo, it might be something else, but my medical team is concerned enough about the blood that my surgeon's nurse is going to give my GE a noogie and put a bug in his ear to get me in for my follow-up scoping, possibly as early as this Friday.

Okay. Last week I got a shallow scoping from my surgeon. He said that as far as he could see (about a foot in), it looked okay. The surgery site knitted nicely but there's a stricture where they connected the bigger end to the smaller end. They thought the bleeding might be due to a leak and that's why they looked: no leak. So they're puzzled and want to know more.

I knew I had to go in for a follow-up colonoscopy in March but the problem is, I'm not looking forward to the prep, especially this soon. Last week's scoping turned my guts into a pitched uproar and I had the quickstep for three days afterwards. I'm still recovering from that. I'm getting another of those semi-regular diarrhea attacks tonight which is sapping me, AND NOW I'm going to be hit with a half gallon of Nu-Lytely in a couple days. That's going to WRECK me! I don't tolerate bowel prep well, I invariably sick it back up before it's all absorbed. And of course, while whatever I manage to keep down is working, I can't sleep or even rest because I have to jump up every ten or fifteen minutes. I sob in relief if the damn stuff lets me alone for a half hour. Bowel prep is hell for me.

Mom tried to console me by saying, "Go in, get it done and it'll be over," but that's just it. It WON'T be over, it'll just be another step into the unknown.

I just want my fucking life back. Image
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby AntiM » Tue Jan 31, 2006 8:08 am

Ugh, you have my deepest sympathies on this one. I had to do fleet phospho-soda, bad enough. I sick it up because the only way I can get it down is like doing tequila shots.

Best I can do is send warm fuzzies and hugs and good thoughts; there's not a lot of bright sides to having a scope, eh?
These are not my fuckos.
User avatar
AntiM
Moderator
 
Posts: 16391
Joined: Wed Mar 24, 2004 6:23 am
Location: Top O' the World, Ma!
Burning Since: 2001
Camp Name: Anti M's Home for Wayward Art

Postby diane o'thirst » Tue Jan 31, 2006 7:01 pm

We're doing a balancing act...

Latest development: My regular oncologist is out of town. However, his nurse asked one of the other doctors at the cancer center and they share my reticence to dive into a full colon prep and endoscopy this week...at least until they do a blood count on me and see what my iron level and neutrophils are up to.

Without getting the blood count, I can tell my anaemia's back, probably due to the bleeding. I'm also coming off back-to-back diarrhea attacks which may point to a depressed white cell count. They naturally want to find out why I'm bleeding and do something about it, but they also don't want to make my present condition worse by making me do a systemic purge and undergo an invasive procedure.

Upshot: Nurse and supervising doctor are going to express their concerns to my surgeon and told me to give him and his nurse a follow-up call and detail my own concerns. In any case, we most likely won't do the scope this week. But I'm still in line for one anyway.

Half speed ahead.

Bright note: they just played Mozart's Jupiter Symphony on the radio Image
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby diane o'thirst » Sun Feb 05, 2006 11:06 pm

*Whew* Bullet dodged.

The pinch-hitter oncologist agreed that the prep for a scoping would hammer me, as did my GE, so I didn't get scoped. And I get the feeling that Lil' Miss Enthusiastic Nurse got a talking-to in the process...

Other good news: they put me on temporary hiatus with the chemo. The side-effects had gone from annoying to debilitating. This is my third night Xeloda-free and my body is still panting and babbling over and over again, "ThankyouthankyouthankyouthankyouthankyouOGODthankyou..." But, at least my functions are more predictable and tractable. For once I'm praying that Thursday never gets here. I have three more treatments to go.

Okay...side note...I was thinking about suggesting that we have a Cancer Survivors gathering on the Playa this year, maybe at the Temple? Let's talk about it.
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby diane o'thirst » Thu Feb 16, 2006 9:49 pm

Update: Today was chemo day, after an extra week off. Fourth of six, two more to go. Turns out from blood tests that the treatments are kicking the stuffing out of my marrow, which concerned my doctor. He stepped back the dosage on my treatment to compensate.

Does anyone know of a treatment, med or diet that supports marrow production, other than transplant? I'm doing a band-aid approach by picking up where the marrow left off and loading up on iron supplementarily and dietetically. I currently take three tabs of iron a day (still anaemic).

Also, another question: does oxaliplatin contain oxalic acid? I recently read that oxalic acid in the system binds to supplemental calcium, turns it into a salt, and eliminates it without being absorbed. If that's the case, I'm packing down 1000mg of salt — basically a saline laxative — which might explain the squirts I was getting. I said, "This is like purging before a scope!" — was I right?

On the lighter side...I took my portable DVD player and <i>Charlie & the Chocolate Factory</i> and giggled, hummed and quoted my way through treatment ("Well, if I was up there I couldn't very well watch the show, could I, little girl?"). My next-chair neighbours (she was getting Taxol) wanted to know what I was cracking up over and the nurse asked me if the movie was worth renting. I told her it was worth buying. Unfortunately I couldn't do the "Augustus Gloop" and "Veruca Salt" Oompa-Loompa dances in the treatment room...too many tubes hanging off me...Image
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR


Postby diane o'thirst » Thu Mar 16, 2006 4:06 pm

Great news.

Went in for a scope yesterday and they found the following in there:

Two diverticuli, a non-bleeding ulcer, some inflammation and one last stubbornly-clinging suture. But NO tumours.

I still can't believe it's been eight months since my diagnosis and frankly, I'm changed. Those of you who've met me on-Playa probably won't recognize me. I only have one more chemo session to go and then WE'RE DONE. They'll be dragging me in for yearly checkups to make sure everything's copasetic(sp?) but unofficially, I am CANCER-FREE.

Personally, I feel fine. Energy's good, no pain, no weakness, muscle slowly coming back and sleep has been good. I'm leaner, a little tiny bit meaner, I know who my friends are and I have no intention of letting my body go to hell like that again. I'm gradually converting my diet to the highest percentage organic and cutting out pre-processed wherever and whenever I can. I drink tea and juice instead of soda, I eat raisins instead of candy, I'm cooking for myself more often (but still eating out — culinaria is an honourable profession and deserves to be supported).

In two weeks' time, I'm gonna be FREE. Hang onto your privates, Generals!
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby Mozy bonz » Sun Mar 19, 2006 6:09 pm

bump
Mozy bonz
 
Posts: 3141
Joined: Fri Oct 07, 2005 8:46 am

Postby Rockdad » Sun Mar 19, 2006 6:44 pm

That is great news good to hear a feel good survivor story....
Eplaya Bar Camp 2006 "What will it be"

The Eplaya Bar Camp Blog
User avatar
Rockdad
 
Posts: 3022
Joined: Fri Aug 19, 2005 9:38 am
Location: Central Valley, Ca

Postby diane o'thirst » Sun Mar 19, 2006 7:10 pm

BUMP

Fuck You, Sunshine Highway ImageImage
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby Rockdad » Sun Mar 19, 2006 8:23 pm

ok?
Eplaya Bar Camp 2006 "What will it be"

The Eplaya Bar Camp Blog
User avatar
Rockdad
 
Posts: 3022
Joined: Fri Aug 19, 2005 9:38 am
Location: Central Valley, Ca

Postby diane o'thirst » Fri Mar 24, 2006 10:49 pm

Instead of plugging y'all up with a crosspost, thought I'd just provide a link.

viewtopic.php?t=12594

It's an article on staying hydrated, written with the cancer survivor in mind.
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby LeChatNoir » Fri Mar 24, 2006 11:37 pm

Great news.


Nice D'oT... very nice...
The New and Improved Black Cat... now with 25% more blather
User avatar
LeChatNoir
 
Posts: 5831
Joined: Mon Sep 01, 2003 8:52 am
Location: Louisville, Ky

Postby diane o'thirst » Fri Mar 24, 2006 11:51 pm

Yeah, I asked the nurse about the ulcer and she assured me it's a side-effect of surgery, very common. In short, nothing to worry about. Today was the fourth day in a row that I felt fine, no issues, no trouble, so I'm ramping up to get back into the swing of things. Five days until Last Chemo Session, YAY! Image

Now comes the fun part: keeping that extra weight from coming back!
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby AntiM » Sat Mar 25, 2006 6:14 am

Woo! Hoo!

Hey, good to hear everything is good. Yeah!

(Side effects, bleh. I got a monstrous hernia.)
These are not my fuckos.
User avatar
AntiM
Moderator
 
Posts: 16391
Joined: Wed Mar 24, 2004 6:23 am
Location: Top O' the World, Ma!
Burning Since: 2001
Camp Name: Anti M's Home for Wayward Art

Postby rob easy » Sat Apr 08, 2006 6:19 am

I can't say that I know you, but they found my dad's colon cancer too late and I've seen the pain and grief.

My sympathy and on what you have come through and I wish you well for the future.

And to quote:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Never give in, never give up.
User avatar
rob easy
 
Posts: 31
Joined: Tue Feb 21, 2006 9:47 pm
Location: 35 14 S 149 08 E

Postby diane o'thirst » Sat Apr 08, 2006 2:20 pm

Yeah...they found my Dad's lung cancer too late, too. He idolized Patton and smoked cigars forever; it came up from the tuberculosis he got in Korea, the cigars aggravated it. He stopped but it got him anyway.

Just a heads-up: I'm not going to pull any punches on Smoke-in-the-Box now that I've learnt cigarette and cigar smoking are contributing factors to colon cancer, too. I never lit up once in my life but did a lot of clubbing in my twenties, lived with a chain smoker for three years, and I'm guessing second-hand smoke was what did it to me in spite of what the study found.

http://tinyurl.com/frxs6

In other news...I'm participating in the Lance Armstrong Foundation's LiveSTRONG Day activities over May 15-17 in Washington, D.C.! They're flying me back there and I'm going to get a whirlwind tour of the Capital with other activists before we meet with Congress to petition against funding cuts to cancer research and health care. Yeah, I'm seriously excited and a little nervous, too... Image

I feel I owe it to Karma for all the support and love I've gotten in the past seven months since my diagnosis.
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby diane o'thirst » Wed May 03, 2006 8:15 pm

Great news!

We are Official. I went in for my baseline scan on Monday, and got the results back today. To quote my oncologist's nurse, "Your scan looks GREAT!!"

My lymph nodes are stable and normal, no liver lesions, and we know the intestines are okay, in short...

<b>I AM CANCER-FREE.</b>

We Made It!!! Image

The Mutineers have been PWNED, by God!! Shiva and Ap-Uautu, me loves Yahs!!! (And the same goes for <i><b>all</i></b> of my friends)
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby hunter S » Wed May 03, 2006 8:19 pm

OOOHHH!! Babe you go! More yellow rubber bands!
Doin the happy hunter tango with the schnauser in your honer!
Congrat's
Objects behind you may appeare larger than reality!
hunter S
 
Posts: 251
Joined: Mon Mar 14, 2005 5:08 pm
Location: Playa San Jore MX.

Postby diane o'thirst » Wed May 03, 2006 8:26 pm

Oooh, yeah! Yellow bands aplenty, my friend! It be strawberry smoothie time! Image
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby Bin Noddin » Wed May 03, 2006 9:05 pm

Good fer you, Diane O!!
"I have gobs of mustard and ketchup on the front of my shirt, which does not make me a hot dog." Sam A. McKeen
User avatar
Bin Noddin
 
Posts: 2995
Joined: Sat Nov 12, 2005 12:00 am
Location: Silver Spring, MD

Postby AntiM » Thu May 04, 2006 6:44 am

Yeah yeah yeah! It's a great feeling ain't it?
These are not my fuckos.
User avatar
AntiM
Moderator
 
Posts: 16391
Joined: Wed Mar 24, 2004 6:23 am
Location: Top O' the World, Ma!
Burning Since: 2001
Camp Name: Anti M's Home for Wayward Art

Postby Mozy bonz » Wed Jul 19, 2006 6:07 am

"I AM CANCER-FREE. "

diane thats great!

Oh and bump
Mozy bonz
 
Posts: 3141
Joined: Fri Oct 07, 2005 8:46 am

Postby AntiM » Wed Jul 19, 2006 7:22 am

I have my two year mammogram early in August. I'm confident, but the nervous feeling hasn't gone away.

Thankfully colonoscopies aren't annual.
These are not my fuckos.
User avatar
AntiM
Moderator
 
Posts: 16391
Joined: Wed Mar 24, 2004 6:23 am
Location: Top O' the World, Ma!
Burning Since: 2001
Camp Name: Anti M's Home for Wayward Art

Postby Badger » Wed Jul 19, 2006 7:46 am

My friend and ex-wife had breast cancer. Fortunately they caught it before a radical mastectomy wes needed. If I rememebr correctly she didn't (wouldn't) consider herslf cancer-free until 5+ years after the last treatment she recieved. Have things changed here?
.
Desert dogs drink deep.

Image
.
User avatar
Badger
 
Posts: 3322
Joined: Thu Sep 04, 2003 2:43 pm
Location: San Francisco

Postby AntiM » Wed Jul 19, 2006 9:02 am

My docs seem to think cancer-free was last year at the first clean mammogram (I also get the MRI one). Could vary from practioner to practioner; the colon cancer was looked at the same way, one year.

I feel like I'm in limbo then, am I a patient or a survivor? Perhaps her five year mark was from taking a drug such as Tamoxifen, which is used for five years after treatment? In which case, I have about three and a half years to go.
These are not my fuckos.
User avatar
AntiM
Moderator
 
Posts: 16391
Joined: Wed Mar 24, 2004 6:23 am
Location: Top O' the World, Ma!
Burning Since: 2001
Camp Name: Anti M's Home for Wayward Art

Postby diane o'thirst » Wed Jul 19, 2006 11:00 am

They told me my lymph nodes were stable and normal, but they're going to give me annual colonoscopies and continue to monitor me, albeit not as often. I visit my oncologist every three months now and my next visit is this Thursday. So my next one will be in September.

Fortunately, I'm reading that they're developing virtual colonoscopy science more and more in order to get more people to submit to it. Frankly, having had three in the past year, I don't blame them. It's a literal pain in the ass.

The yardstick I'm looking at is 2011, five years from now. If I stay cancer-free until then, I can get health insurance!

P.S. Is there any interest in getting a cancer survivors gathering together on the Playa?
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby diane o'thirst » Fri Feb 09, 2007 2:03 am

Bump.

Saw my oncologist a couple weeks ago and he told me my immune system's back up to normal, red blood cells normal. No tumour markers in sight. So far, we're good. I gained weight but I'm working on that.

Wow, just read through the topic. Can't believe a year ago, I was sick in bold caps.
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

Postby Toolmaker » Fri Feb 09, 2007 6:57 am

diane o'thirst wrote:Bump.

Saw my oncologist a couple weeks ago and he told me my immune system's back up to normal, red blood cells normal. No tumour markers in sight. So far, we're good. I gained weight but I'm working on that.

Wow, just read through the topic. Can't believe a year ago, I was sick in bold caps.


GREAT!! Glad to hear such wonderful news. I am so very glad to hear you have been blessed with such good news. One of the things I have been doing for the past few years is using a couple of my computers to work on the cure cancer project. www.grid.org I used to use the seti@home but I changed to the cnacer research since I feel that is far more important.
Toolmaker
 
Posts: 2512
Joined: Wed Sep 27, 2006 12:44 pm

Postby diane o'thirst » Fri Feb 09, 2007 3:18 pm

Thanks for the tip. I'm getting an upgraded computer next week so this one will be freed up for pretty much everything except word processing. Does their software support MacOS9.x ?
ImageImageImage
User avatar
diane o'thirst
 
Posts: 2095
Joined: Tue Sep 09, 2003 5:04 pm
Location: Eugene, OR

PreviousNext

Return to Get Involved!

Who is online

Users browsing this forum: No registered users and 1 guest