What to do about pinktober...yuch..

i'm all for expensive research - and more of it. i loathe the pinkwashing crap because it is vapid and it misses the mark, which is real work toward cures. i'm grateful that the research has yielded all it has, and for the scientists working tirelessly for all of us.

and happy for you, apple, with the Xeloda! (your icon always makes me smile)

j

PInk is a bad look for me.

I try to remind people I know to make sure that any of the pink products they buy are actually contributing to cancer research.  I wouldn't be here today without the latest research so if it helps, I'm for it...if it's just to make a buck...not.  Check the fine print.  :-)  Hugs and blessings, all.

None of the ticky-tacky pink products I've seen in stores or catalogs say that a dime is going to research, xeloda, or anywhere else other than some CEO and his/her shareholders' pockets. In the meantime, every time I go to the store, get my mail, turn on the TV, or take a walk at work, I'm bombarded with an ocean of pink and teen-agers getting their rocks off by saying "ta-tas" and "boobies" under the shield of "breast cancer awareness." Thank you, but I'm "aware" of breast cancer every time I take my shirt off, and I really do need to escape from that "awareness" now and then. It's what keeps me healthy.

The majority of the bc research that I read about is funded by the NCI and the NIH, not Komen.

Prior to having bc, it wasn't pink junk that reminded me to have a mammogram; it was my doctor and the memory of my mother dying from bc that prompted me to schedule an appointment.

 i just laugh at the pink stuff.  just a way to advertize i figure.  they have to pay for advertising anyway. 

i never wear pink - it's just too girly.  I do however, own and always wear a Talbot's watch with a pink leather strap.  My old roommate got it for her graduation present and gave it to me because she hated it.. it's actually super cute and reminds me i am a girl.  kind of funny that I've latched onto it.

so many less people (how's that for an oxymoron?) are dying of breast cancer.  that's a start.

Orlandpark---I har ya and everyone else.Find a dame cure.find a damn vacine.WHERE IS THE MONEY and please even people who are NED are sending me pink shit to put on my facebook knowing how much i hate pinktoger.

everywhere i go its an argument...especially that i am ned....why dont i advertise it...because maybe if i wanted the whole world to know i did? have the monster it would not be heard from facebook.I will not put a thing pink on all moth.And I love HOT PINK.

end of rant!!!!!!

When the checkers at Safeway ask if I'd like to donate to bc awareness, I say, "I already donated..MY LIFE!"   xoxo   

No Deb - if you like pink October that is fine. Everyone is entitled to their own opinions. Just remember these anti-pink threads are created by people who DON'T like pink October and most of the people who LIKE all the pink bc awareness simply don't post here. There are lots of people just like you, so don't feel guilty.

I happen to be in the don't like pink October group. None of us have to like everything that is posted.

Thanks, Gill and Weesa. I know each of us has our own opinion about this subject.  It helped to get it off my chest.

Weeza, my doctors will not say it was chemo for sure, they just tell me its possible. Apparently you can get it from a neurological problem, diabetes, (I'm not a diabetic-so I have Idiopathic Gastroparesis, which means unknown cause), a virus, or former abdominal surgery, chemo, and some medications. I've had all of the above except the diabetes. All of these things can damage or clip the vagus nerve to your stomach, which has caused this. I know in my heart it was the chemo, because I never had any problems with digestion until I went through it.

I had the Gastric pacemaker inserted in august of 2010.  it took about a month for my body to get used to it, and then I had about 7 or 8 months of feeling great. I was able to eat most anything without any trouble accept occasional bouts of vomiting and nausea. Then this past April, the nausea/vomiting and epigastric/chest pain started up again. I ended up being admitted from the ER, and they readjusted my paceamker. It was originally set to fire 1 time a second, with a 5 second break. set at 2.0 voltage if I'm not mistaken. They can increase voltage slowly up to an i8 or 9, I believe. They did another EGD and found the gastritis, duodenitis,hiatus hernia and esophagitis. my symptoms of nausea/vomting persisted, so I kept going back to my doctor;s office and he kept raising the voltage and times it fires. currently its set at 4.1 voltage and it fires 3 times in 3 seconds, and then has a 5 second rest. I normally don't feel it fire, but occasionally i do. It's not really painful, just wierd feeling. I'm waiting to get my disability approved so I can go back to see him. I'm trying to hold off until then, because I'm really struggling financially and I have a 30.00 dollar copay for specialist office visits. I owe them for the past 2 times I saw them still, and I cannot pay  anything on all the medical bills that have piled up since all this began in 2008.  I've gone through all my savings.  My credit is ruined. So I've cut back to the bare essentials, which isn't easy.  i can't afford to hire an attorney to file bankrupcy but I did hire one for my disability appeal because they only get paid if you get on disabilty. they get a percentage of your first check. I just take one day at a time. That's all any of us can do.

Thanks for ya'lls kind words. It brightened my mood.

Take care,

deb

Mary, I've never heard of transverse myelitis, are you still having some if its residual effects? I agree its been harder for me to deal with long term illness of Gastroparesis. After the initial trauma of being diagnosed with breast cancer, I felt I had some power in knowledge of how its treated and what to expect because there is so much information on breast cancer.  I had alot of support from others with people who'd been diagnosed before me,  and I gained strength in their knowledge. But with these conditions like you and I have been diagnosed with, I had nobody to ask.  No one had ever heard of it before.  .  If I'd known that the pacemaker wasn't as affective as it was presented to me, I don't know if I'd have gone ahead with the surgery.  It does help some people but not everyone.  But it did give me 8 months of normalcy, so I'm thankful for that.

Take care,

deb

I'm thankful your residual effects are not as severe as it could be.  But I can imagine how difficult it would be to live with constant parasthesia in one leg of your legs. When I had the pacemaker inserted, I woke up from anesthesia with a numb left arm and hand. Had no feeling, like it was asleep and it gradually took 2 days for it to go away. While I was in the hospital, my surgeon was going to start running tests if it didn't go away, but it did. To this day, I have no idea why that happened, I never got any answers and the surgeon didn't know why it happened.

As for the GP, my Gi doc said that in his experience with the patients he sees with it, that the symptoms tend to be cyclic, but he told me no cases he has are the same. Alot of his patients come from Alabama since Biloxi, MS is the closest place that has a surgeon that does the pacemakers. My GI doc told me its permanent and chronic.  But none of my doctor's: Gi doc, internist and oncologist will investigate what caused it in the first place. Since I've had most of the risk factors other than diabetes, they tell me it could be any one of those and that it doesn't really matter what caused it because it wouldn't change the fact that I have it and the outcome. when I had my gastric emptying test done at the hospital, I knew it had not been normal, because the monitor is placed where I could see it, and the radioactive egg sandwich they give you too eat, I could see on the monitor sitting in my stomach. I told the tech I could tell it was hardly moving and she didn't tell me yes or no, cuz they are not allowed, but i knew. When I got the results from my Gi Doc, he told me normal finding are usually T45. Which means it takes about 45 minutes for the food to pass from the stomach into the duodenum & intestines. That's the ideal time a healthy person should have. Mine was T20hours. They told me the test showed it takes my stomach 20 hours to pass food into the small intestines.  I tend to have nausea and vomiting that begins about an hour or two after eating.  on a day to day basis, the only time I have hunger pains is usually from about 9am to 10am after I've fasted from night before. Most mornings I wake up queesy, but I just dry heave if I'm having a really bad day. I bring a heart shaped bucket and washcloth in my car and at work, because throughout the past 3 years, I've dryheaved or vomited numerous times while driving. That is scary when it happens while driving. I just grab my bucket and do my business while I'm driving. And my work has become used to it happening because its been going on for so long. My goal is to work 4 hours per day from about 7:30am to 11:30am while I fast from night before. Than I come home, take my meds and eat It's usually an egg, chicken or tuna sandwich on white bread, plain chips and mixed nuts. same thing day in and day out. .  I then lie down until 4 or 5pm and force myself to get up. I'm not hungry and its difficult to eat dinner, but I graze for several hours after taking another dose of medicine throughout the evening.  I'll force down perhaps a cup of dry cereal, than wait an hour or two, maybe a pudding cup, then an hour or two I'll have a kit kat. Kit kats are the only candy I'm able to keep down. Don't know why, none of the foods I can tolerate with the phenergan makes any sense to me either. My internest suggested I try the pudding cups to get alittle calcium in my diet. I also take bites of babyfood.  And I've just started getting  brave enough to try the whipped yoplait. I had to talk myself into trying it, because the last time I had regular yogurt, it wasn't a pretty picture. and this is all on a 'good' day.  Occasionally I have such a bad day that I can only do liquids, which is coffee and orange soda and ensure. the ensure I have to take sips from, but I can most of the time hold down a sip once an hour or two on bad days. I keep an ensure at work and sip on it once an hour or two so my blood sugar doesn't drop. I find if I don't do that, around 10:30 or 11am, I get the shakes and weakness from sugar dropping.. All this has been through a few years of trial and error on my part. Occasionally I'll not take phenergan to see if I can hold down my safe foods without it, but I get so nauseated and can't. zofran doesn't work, neither does REglan, and i had such bad side affects with the Reglan, they had to take me off of it. I have medication controlled hypertension because of a benign mass on my left adrenal gland, (that's another story) have had it for 20 years or so, but Reglan made my blood pressure in the 190's/over 100's and I became tachycardic, so they took me right off of it.

anyhoos, thanks for listening. and I wish you well.  If you are on facebook, or anyone of ya'll who reads this, You can find me under the name Deborah J Panger.  I tend to live there. And am addicted to the games. lol

take care,

deb

Deb: I'm sorry too to hear how this disease has taken over your life. I just can't imagine being able to work while going through all this. I wish there were some other solutions the doctors could suggest for you.

Just thought of new buttons we could wear that say "f*%k cancer" during this month.  I'm sure we'd all get a lot of head-turns from people, but that's the best "awareness" I can come up with.  I do hate the word "survivor".  None of my friends that have been dealt BC consider themselves survivors.  Neither do I.  BC has meant hours in surgery, masts & reconstruction, hormonal therapy, radiation, chemo, not to mention the mental toll it takes life-long.  It's not good when you hear that survival stats have not made significant changes over the past 15 years either.  What gets me through is jumping into my hobbies and getting outside whenever I can and enjoy walks, nature, and sunshine !  OK - I'm done...

I ignore it but I support all of you who walk! 

Walk well for us Mary! And thank you.