Starting Chemo March 2015

Jackbirdie

Oh Molly I know the answer to the NFL question. It's called pinkwashing! Distracts us from the fact that this huge man beat up his wife or girlfriend last week. I'm plastering memes every day or two as pinktober approaches. Really annoys me.

Jackbirdie

Eileen- I love your plan, your action, and that you are feeling good today! Yay forYou!

Jackbirdie

my news for the day is the bathtub went in. No tile yet, but the contractor said I could test drive it if I didn't splash my rubber ducky around too much. It's wider and deeper than the 10" puddle I had before.

Here it is. So far.

I bought some fizzy bombs from Soap Hope. A very cool company that makes micro loans to very poor women so they can start their own businesses. Often $200 or less, and they make good products. I filled a large vase in my guest bedroom and they smell good and invite people to consider fizzy therapy.

Beachbum1023

Hey Jackbirdie, my FIZZ THERAPY usually includes some fine Kentucky bourbon. I never tried it in a vase.............be right over!

Jackbirdie

hi Cheryl! I was thinking champagne!

eheinrich

Thanks Katy. My friend K8 & I have a play date to make our own bath bombs! Love baths. Cant wait until the recon is complete & I can bathe again.

Jackbirdie

you have one going on too, E? (Bath remodel?) Tits and tubs. Maybe we should open a design build firm for post bc trauma to make their homes more inviting..

I wanna play and make bath bombs too...😩😩 can I come?

Or would it be too confusing with 2 K8s? Teehee.

SpecialK

Not defending the NFL necessarily, but the pink they wear during the game is auctioned off and the proceeds fund a program, connected to the American Cancer Society, that started in 8 cities for underserved/uninsured women to get cancer screening. This program is in its fourth year. I was originally diagnosed on Sept. 27 (5 years yesterday!) just in time for Pinktober - I felt like I couldn't even leave my house, or watch TV, there was pink everywhere - no escape, including in the doctor's offices. It was overwhelming the first year, but after that I started getting angry at how little of the money raised through pinkwashing actually makes it to research or patient assistance. Also, how much of what is done in the name of fundraising is so tasteless, too much like a party, or cutesy - it makes me uncomfortable and pissed off. A good site to look at is linked below - they are excellent at outlining what is wrong with the status quo now, and what to do about it.

http://www.bcaction.org/

Jackbirdie

Thanks Special! I had already been aware of this group and have shared some if their "insights" on my FB page.

But you just inspired me to do something more. I just sent an email asking to get some help which they offer to help people get a local screening of Pink Ribbons, Inc., which is an excellent documentary. I have only been able to rent it but not buy it. But bca also helps to help you get it organized.

I am finally mad enough I'm going to do something about it and try to arrange a free public screening at our hospital's education center.

Thanks again, Special, for always pointing us in the right direction. And wish me luck! It's a bit late to get it done in October, but maybe we still can. If not, I'll be loaded for bear next year! Or any other acceptable month. It doesn't HAVE to be October, but I think it would be best.

pboi

Thanks...it's nice to know its not just me with these feelings about Pinktober.

Eileen...happy to hear you are feeling better. I feel the same way about 2016 being a new start. I'm scheduled for a prophylactic mastectomy and oophorectomy in November, so I'm hoping I'll be recovered and feeling good for a fresh start in the new year.

Katy...nice tub, enjoy! Can't wait to see it when it's all done 😊

PB

Meme117

Katy the tub looks wonderful! Bath fizzes too! I love the memes.

Thanks Specialk on the link. And congrats on 5 years!!

E sounds like a plan. I took my son to a local woman who had a home based daycare when he was young, it was the best decision. Glad ur feeling good.

I also get annoyed with all the pink washing and I love love the color pink. I've decided to do much research and be an advocate against pink washing and the trivialization of breast cancer. My friends and family better not buy me anything pink

SueH58

Special K - CONGRATULATIONS on your 5-year anniversary! That's so HUGE!!!! Couldn't happen to a better person. You are so awesome. Does it seem like yesterday or forever ago?

Eileen - Where are you moving to? I hope you have a darling place all your own. I can see how hard this is for you, and hope that 2016 is a new beginning for you (and all of us!). BIG HUGS!

SueH58

Of course I'm happy to be moving on, but not necessarily to give up the "freedom" I had while out on DB. Funny, isn't it? I was off because I was undergoing breast cancer surgery and treatment. Now I'm well enough to go back to work (although I wish I could be out til rads are done). But I did enjoy focusing on myself, healthy meal planning, do whatever I chose, etc. I will miss being able to go to farmer's markets, the bead store, etc. while back to work. It's a double-edged sword. I sure look forward to being able to retire in 3-4 years, unless I'm downsized sooner than that.

Sorry to babble--just thinking (well, writing) out loud.....

Love you all! Thanks for being with me during all this time. You're the best!

SpecialK

jackbirdie - good for you! I have watched the movie, and asked my DH to watch it with me - it is truly educational, and it speaks a truth that is overlooked - especially in October. I sure hope you can set things up in time, but don't stress if you can't - I don't want your decision to bring knowledge to more people to become any kind of negative for you personally. P.S. Your bathtub rocks!!!

I would advise anyone looking to donate funds, or endorse any organization that does, to fully investigate with Charity Navigator - it is a site that will spell out what they do with the money and how they rate.

Thanks for the congrats - it feels like both a long time and yesterday at the same time - if that makes sense. I have had an unusual situation because of ongoing recon issues - much longer process than normal, and a ton of surgery - so in many ways I'm still immersed. I had an appt this morning with my new PS (I have had one surgery with her so far) and will have surgery in Dec and finally get a new expander on the left, and hopefully work toward a complete reconstruction. It has been flat for a year and a half, with a pretty large implant on the other side, which is a challenge to match up - so I'm excited! I'm hoping that slow and steady will win this race. So, those of you in the midst of recon - I'm right there with you!

Jackbirdie

Special- I neglected to say...🎉🎉🎉🎉💥 congratulations on 5 years! You are an inspiration to so many. A great source of knowledge and inspiration to me. Thanks again. Katy

SpecialK

jackbirdie - thank you, so sweet

neverthought

Grateful to Special for sticking around and for providing us with the evidence based info. And just grateful in general for everyone who's stuck around! I'm not sure I will still want to talk about things in five years and pretty sure anyone I'm close to won't want to hear it anyway. They don't want to hear anything now but that I'm feeling better than ever. So that's what I usually say. After news this week about no need for chemo in some cases I feel like saying - that's not me, doesn't apply to triple negative, but no one wants to hear that either. So suck up the fear and anxiety.

Way before my own bc, bc awareness month changed me from someone who loved pink to someone who would never wear it. Just google it and first thing to come up are adds for tchotchkes. I just didn't like all the hoopla. Now I wear what I want but still don't like the hoopla. Pink glove videos.......... Am especially skeptical of what's in it for the drug companies when it is more about cure than prevention. Of course I want a cure for all of us, but I also want to do away with need for a cure. Gave some of the Think Pink Live Green materials from this web site to one of the MDs I work with and she was very impressed but not sure how much time patients will devote to reading/putting into practice prevention strategies. Even the checklist was pretty daunting: http://www.breastcancer.org/risk/factors/tplg-booklet-checklist. It's time consuming and not so easy. I struggle with convenience/cost over safety and trying to find out what is safest shampoo, buying organic, safest cooking. Seems like there is not enough time in the day. But I don't want to go through chemo again, ever. And don't want anyone else to either!

Does anyone use the Environmental Working Group web site to look stuff up? http://www.ewg.org/skindeep/

Done being grumpy now. Off to work and must put my happy face on. Thank you for listening.

Trvler

Special: Congratulations on 5 years! I know I, among many others, feel very lucky to have you in my life.

I am not sure about the pink stuff. What drives me batty are all the cancer commercials on tv. I feel like with all the money they spend advertising, the care is either really expensive or not that good. Plus, I would like maybe 10 minutes of mindless TV watching to not include reminders of cancer every time.

Jackbirdie

Neverthought- yes, I now run all my skin products, from moisturizer to sun screen to make-up though EWG's site skindeep. It is an excellent resource.

Also, I recommend watching the documentary Pink Ribbons, Inc., available for rental on Amazon Prime. Better yet, get your friends to watch it. We already know the horrors of pinkwashing... It's everybody else that needs to stop swallowing the bullshit force fed to us via the media during this once favorite month of October- now a nightmare.

On bca.org there is information in how you can obtain this DVD and get help on organizing a public screening of this excellent documentary.

Carrie37

Very well put Neverthought. I keep trying to figure out how I feel about October and my first BC awareness month since diagnosis. Since I was declared cancer free moments after surgery there is definitely a shift from family/friends just wanting to hear I am "all better." I was just guilted about not going to a church program tonight. I have fills this morning and an Echo this afternoon. My mom says " a lot of people there are very worried about you and want to see how you are doing ." I want to scream and cry. again. But you are all right about the pink campaign. Awareness is great but now the focus should be on prevention. Awareness for some of my friends might need to be a look at my chest and a list of treatments/tests/surgeries since dx. I just want to forget it all but I'm still in treatment. And the constant reminders on TV are bad enough about Pinktober. But the Nuelasta commercial kills me! I HATE that one. Why advertise that? I'm pretty sure most doctors are recommending it now. Also, anyone know how much that shot costs?!!!? I have a feeling this month will be a roller coaster for me. Perhaps my approach will be educating my circle of people on prevention and early detection. Especially since a self exam probably saved my life.

Trvler

Carrie: I am with you on the Neulasta commercial.

molly1976

I cannot believe there's a Neulasta commercial. Drug companies advertising prescription medication is one of my biggest pet peeves. If they would stop spending so much money on advertising maybe they wouldn't need to charge my insurance company $30,000 for every single Herceptin treatment.

ksusan

Congratulations, Special, and thanks as always for all your help!

eheinrich

Sue: I actually moved in December but now I'm going through the remaining things - boxes of sentimental stuff, the garage, junk drawers. My place is so cute & cozy. I really like it. My yard has a lot of cement which is the only thing I would change. Once I can lift bags of potting soil I'm going to put in some pots w bright colored plants.

Katy: I meant my recon. Although I'm probably at the point where I can do a bath, need to ask when I go in on Thursday. I'm also going to check out Pink Ribbons - thanks for the recommendation.

Special: Congrats!!

I don't understand the Neulasta commercial. Who exactly are they targeting? Oncologists? Cancer patients?

SpecialK

I also use EWG's site, I find it an excellent resource. The thing about jumping over cure to prevention is that since we don't fully understand what causes breast cancer, we also don't know how to prevent it yet. People with very low risk factors still have breast cancer. I think there will be an incremental approach - better treatment - which we are already seeing with new targeted therapies and better techniques for surgery and reconstruction, newer technologies for rads, then moving closer to therapies that can cure, then a better understanding about prevention. For those who want to participate in helping with understanding regarding prevention I suggest that you sign up for Dr. Susan Love's Army of Women study - they are looking at both breast cancer patients, and those who have not been diagnosed, and collecting data from both - to better understand why some women develop breast cancer and some don't. Here is a link, I did this - it is easy - you answer some questionnaires and periodically get emails offering additional studies for which you may qualify. I am participating in another one from her site as well on cognition and activity in regard to hormonal therapy drugs.

https://www.armyofwomen.org/

Thanks all for the congrats!

SueH58

Eileen - again, hugs to you as you finish your sorting. Glad you like your new place. I'm always envious of those in CA - your pretty patio pots stay out year round. 3-4 months here in Wisconsin. We're battening down for the winter!

eheinrich

As soon as it stops being In the 90s I'll start planting fall veggies. There has to be some perks after dealing w/ months of 90-100+ temps

Trvler

Molly: Are you getting the $30k figure from your insurance or from the hospital? Because I thought they were charging $21k for my infusions (per the hospital site) and when I looked at the insurance, it was clear they were only paying $9k and the higher figure was the billed amount but they have a contract rate that is much lower. I know this wasn't your point but I found it interesting.

molly1976

That's the amount the hospital bills my insurance, Alison. But like yours, Blue Cross only pays about half that because they have a negotiated contract with the hospital. I do wonder what happens to out of network or self-pay people, though. Are they held liable for the full amount?

Carrie37

I have a strong dislike currently for insurance companies (mine specifically) and the drug companies. I think the Nuelasta commercial is targeting patients. Two sisters, one with cancer who did her research and found out about Nuelasta. "Ask your doctor if Nuelasta is right for you."

Thanks for the link SpecialK. I am signing up for that and I think I will ask friends to do it too. The people without cancer are probably very important to the study too.