Starting Chemo May 2008

WHEW..........glad to hear you are back home RanD.

As for that Doc.,.....hand me a shovel too!

Karin...great video! Keep those shovels handy!

oops...I also gave my endorsement as having used the products and how greatthey are....

Okay, looks like I started something,

Turns out that one of my cousins is doing the walk for me and has a meeting tomorrow night.  She said she had no idea where the  money was going to and assumed that somehow we got some kind of support.  So she said she is going to ask them tomorrow to explain where the money goes.

Its not that  am not thankful for the research and the womnderful meds it has provided.  But sometimes the cycnical part of me feels that it is more in the interests of big business to find the drugs which generate cash, instead of a cure which cuts off the cash cow.  Sorry, i have no idea where tis pissiness is coming from.......

Diabetes needs more attention as well, and when we have a personal investment its hard to deal with apathy.....

but I love you all! randie

Randie--I can totally see where you are coming from.  Especially when it comes to where all the money goes.  The cash cow....the pharmacutical companies...they don't want to loose their $$$$.  They offer docs a seminar on the meds, procedures, etc...pay for expensive trips, even pay for fishing trips..I know this because my DH has taken pharm reps and docs on guided fishing trips and they have told him that all they have to do is show up at these " seminars", say hello, then go golfing for the rest of the day/week--show up on Monday, sign in, come back on Fri, pick up transcripts, all expenses paid--in Hawaii, or wherever. 

I used to work in a doctors office, and as much as I loved it and I learned so much, the drug reps were worse that phrianas--(although I do miss the free lunches!)  But when the rep wants you to keep track of how many patients a certain drug is prescribed to, then you, the nurse, gives this info to the rep, and in return you, the nurse, gets a gift certificate from the pharm. company, because the doc prescribed that drug--it becomes a vicious cycle---and the doctor gets a big check.  We also know this because a good friend of ours is a doctor and he got in to some major trouble for over-prescribing a med and was receiving kickbacks from the pharmacuetical co.  There is too much waste with the corporate side and so much more could be devoted to research for a cure.  

And on the subject of research, while it is possible that someone may stumble on the magic bullet someday, there are thousand of research scientists, living off the funds from these donations that never produce anything in their entire career.  Throwing massive amounts of money at a problem doesn't always solve it.  At least a portion of that money should go to the people who are actually suffering through this.  Instead of them having to wonder where there next meal is coming from or how they are going to pay their bills.  The stress levels from that are counter-productive to one's recovery.  

Over a year ago, I was looking into the Komen walks and was really thinking about joining in, due to memories of my Mother and my 2 Aunts that I have lost to BC.  I couldn't find info regarding where the money actually went.  There was a minimum amount of $ that you were required to raise.  Then...BAM...I was diagnosed with BC...my thoughts have changed and pink is now a color that is a constant reminder of what we have all been through this past year.  

Okay, enough for tonight.  Know that I love you all and you are always in my thoughts and prayers!

Gators ... that's it, ranD!  GATORS.  We're not just women with shovels, but we can be 'gators!  (Except during football season, when loyalty to my previous place of employment precludes me from even mentioning "gators" in favorable terms...)

I do agree about all the "Hallmarking" of BC.  People give money and time because they want to feel like they're contributing something.  They want to be involved; but they have no idea what happens to their contributions.

There was a conversation going on elsewhere about whether the Komen Foundation ("Susan G. Komen for the Cure") provides support for research or treatment of lymphedema as a complication of BC.  Apparently, the answer is, "It depends...". 

There is the national Komen organization, which apparently does not. According to the "LymphNotes" website, (http://www.lymphnotes.com/article.php/id/377/), the mission of the national Komen organization is to "... save lives and end breast cancer forever by empowering people, insuring quality care for all and energizing science to find the cures."  Whatever that means.  It doesn't include support for women who've actually had BC and developed complications, I guess.  OTOH, I tried searching the Komen website for their official mission statement, but all I got was a reply saying there were "No Documents--Your search did not match any documents."

Then, there are the local organizations.  The LymphNotes site says the local Komen organizations can do whatever they want with the money they raise.  I don't know if that is true or not, because I couldn't find anything on the main Komen site that distinguished between the national organization and the local groups.  I also found nothing useful on the main site to explain what has been accomplished with the money they've spent at the national level.

So, who knows what they do.... but at least we might be able to find out by asking the local agencies.  "We used it to buy cookies for our volunteers"?  "We used it to purchase pink T-shirts for the first 500 people who attended last week's basketball game"?  "We bought new carpeting for our office"?  (I made those up.)

ranD, you need to fire that doc who treated you so poorly.  Sheesh.  What stone was she hiding under, before she decided to "serve humankind" as a physician?

otter 

Back from the doc and get your shovels out

Apparently, Doc discharged me with what was a 9 on my platelets, you know the one that should be in the 100s......My onc looked at the sheet and asked me how the transfusion went....whn I asked her WTF, she dropped her jaw and ordered me to get an immediate draw and to be prepared to stay overnight for a transfusion...took 2 tries(apparently if I am col, I am a fast clotter) but we waited and the reading came back at 89, not stellar, but better.my WBC is still low (1,9) so I am scheduled for chemo next Thursday and she is dropping the dose and I will getting Neupogen shots and better follow-up.

My nurse told me that my onc was on the phone to the other doc reaming her out for not waiting and checking the count to make sure it really was a dalse read rather then leting me go home and basically bleed to death.

Okay, time to DVR myself...ran

Randie - I think your onc deserves an honorary shovel.  (I just spent an hour catching up.)  Ream away!!

Maybe we should ask Oprah to look into where the funds for Komen and other fundraising organizations actually go to...

DAT over here, too.  It's been a long and hard week.  Tuesday, I was computer-less because apparently, our computer was taken over by a virus that makes your computer a "dummy" and allows hackers or whomever to use your computer when you are on the internet.  Then they can do their mischievious deeds and leave the trail with you.  So, $250 later, we are back.  Sheesh.

Noelle - I'm gonna go try the Muscle Mist on my shoulder - couldn't hurt! 

ranD, I think we're way beyond shovels.  I will supply a tractor with a backhoe.  A platelet count of nine (thousand) and she lets you go home???  That woman is much too dangerous to be practicing medicine.

As for the issue of money-raising and where the money goes...  I've decided that, if I give anyone anything, it will be at the local (grass-roots) level.  IMHO, a few dollars will go a lot farther and mean a lot more if given locally, than if bundled together with the millions of dollars Komen is getting from General Mills, Yoplait, American Airlines, Hallmark, etc.

My cancer center has an "angels" group--they're BC survivors who were treated at that center.  They volunteer for "shifts" during which they hang around the cancer center or the breast clinic to escort women to their appointments, answer their questions, etc.  They also supply snacks in the breast center waiting room.  They're kind of like "pink ladies" but they're dedicated to that one part of the hospital.

There is also a separate philanthropic group at the cancer center that pays for coffee, juice, snacks, magazine subscriptions, books, etc., for the chemo infusion center.  They meet occasionally and respond to specific requests that will benefit patients getting chemo.

I think there are other local agencies that would appreciate help, too.  I'm pretty sure some organizations accept donated scarves and caps, and maybe even foobs and wigs (in good condition), for BC patients.   I was given some scarves by the local American Cancer Society folks.  The very nicest one had been hand-made by high school volunteers who included a little note to the new "owner".

So, that's the sort of thing I wish people would do.  It looks great on TV when hundreds of people show up, wearing pink T-shirts and caps, for a Komen run/walk.  But, who really benefits from the money?  There was a run/walk here last fall, with a $10 registration fee (even for BC survivors).  According to the fine print in the announcements, the run/walk was to "promote awareness."  The money collected from the registration fee went to pay for balloons, banners, signs, and snacks at the finish line.  AFAIK, nothing went to support research or to help women deal with BC.

I was thinking about doing the run/walk.  Then I realized I was pretty much aware, already.

Warm, loving hugs to all of you...

otter 

Karin,

very creative...what would we do without your pics???Hope all is going well for you.

A little bit anxious today, yeserday the doc said lungs were filling up again and they can;t be drained until my counts are better,  So that leads t worry, stress and you know eventually more SOB.  So, today;s job is to expect my miracle and rest,

AS far as the Dr Death issue, I am writing her a letter expliaining exaxtly what she did to me an my family.  Part of the reason she was like that was that I am on the State Insurance (Medi-cal) and she really turned her nose up whenever she mentioned my insurance covring or not covering something.  Will set her straight on that as well....

love ya, ran

my new avie....my 11 yo rockin out...

here...D.A.T met some Canadian HGTV celebs at a party 2nite.. had a lovely time. RanD.. praying for Sahara Lungs and good counts. Get thee on the neupogen!! 

love 2 all

xoN

Girls, I laughed, cried and, (ditto Jeano) was dismayed and disgusted at your treatment RanD. If ever a girl was made of cast iron, it's you girl! And when spring comes...well, all this will be behind you. I am absolutely with you (and all the other mutilated cynics) about 'pink' fundraisers. We have all got it all wrong. It should not be up to the public to raise money for cancer research, for fuck's sake!!!! (Not very chaplain-like, I know. Just picture Jesus doing the nana with the money-lenders at the synagogue). The millions raised should absolutely go toward helping all those families and gals who have been smacked by cancer and simply cannot recover financially. 'Branding' this disease is simply disgusting and I'm over it. I'm not even embarrassed to say it out loud any more when people tell me they are going in this walkathon or that tri for cancer. Anyway Ran, I know from being almost killed by pneumonia (BEFORE my immune system was knocked out by chemo) that it is NOT an illness to be trifled with and THAT doctor needs a good fecking legal scare. I love you all...more than anything.

PS I'm almost finished building my chook-house and the chooks are coming tomorrow!!!!! 

RanD~ count me in on the beating the living crap out of that doctor. Those are the type that is in it only for the money they make not to help others. To heck with the shovels.... bring me a tank. We'' blow a hole in her office wall to drag her out then run over her expensive car on our way home. I feel blessed with the doctors I got, they have all been so nice.... well except for the a-hole plastic surgeon that upset me so much that I canceled recon.

Gracie~ I DO believe your mom and dad were with you and sending you a message. It is not for us to explain just to recieve.

chook house...... ok I'm gonna have to google that one too LOL. I love the new words kerry teaches us :O)

Rock~ I would love to see more pics of the market and such. I go daily to soak up your words on your blog and check out the pics. It must be breath taking there. Hope your performance was fun

Not much happening here in my neck of the woods. Bought a new fancy shower curatin last nite that I have been eyeing for a year now. Bought a bunch of chicken at sam's club and finally got my freezer stocked to the top. That part feels good. I had just stocked it last year when all this crap hit me and we lived on it most of the summer. It really helps for those lean times when bills take over, I don't have to worry.

They called for 5 inches of snow today all week long. Then last nite it changed over to 1 inch.... all we got was flurries. I'm not complaining too much. It's pretty to see but I'm ready for spring to hit.

squishes and slobbers "O)

I liked Jen's idea so I sent out a tank brigade.