Tag Archives: Pink ribbon

Coming up for air . . .

11 Dec

I don’t even know where to begin. I have started to write a blog post so many times in the past several months, but have not been able to finish one. I have so many “saved drafts” of what should be a simple, easy thing to do – writing a blog post – but nothing. I haven’t been able to get past the first few paragraphs because if I were to continue with something I would actually make public, well. then it would not be true.

So instead, my only contribution lately has been to re-iterate my complete disdain for the Susan G. Komen Foundation, Nancy Brinker et. al. and that is about as far as I can get.

I just haven’t been able to speak personally here at all. It is just too much.

It is all fine and good when all you have to say is that the coast is clear, things are getting better, “I’m feeling stronger every day”, “everything is so much better now”, “cancer is behind me”, oh and let’s not forget my favorite: “I’m so grateful”.

First of all, I am grateful. Grateful to have celebrated, just a few day ago, another birthday. A birthday that a few years ago I had about a 50/50 chance of having . . . so yes, I am really, really, really grateful.

But, for some reason, as I make my way back to a more normal life post cancer, I am finding it harder and harder to cope with post cancer life. Because, you see, there is no real return to your life before cancer, there is no “cancer is behind me” – at least not in the sense that cancer ends and you go right back to the way things were before. And, I am not saying that I want to go back to the way things were before entirely. But, let’s just say that I liked feeling like I had a path and I knew what that path was and I was able to handle my life.

So I haven’t had much to say here. I jumped in only once during the month of October and that was simply because some idiot posted a nasty (and mostly just ignorant)  comment on one of my posts from last year where I asked Komen to leave me alone. I had to respond to this person because, well, I had to. I highly doubt that my reply has convinced this person to stop drinking the Komen Koolaid, but, I gave it my best shot.

I find it is easier to express myself in areas cancer related when it is confined to the following situations 1) talking with someone who is newly diagnosed and who needs some support, encouragement (“look at me, I am fine, you will be too”, etc.) or 2) calling out Komen for their misleading use of “for the cure” when in fact they (in my opinion) are more interested in their own commercial branding, the PINKWASHING of corporations and the continual re-perpetuation of lining their own Komen pockets and the pockets of those companies for whom they sell their pink ribbon in the name of pink washing . . . NOT the cure they constantly profess. (For those who have not heard of the term “pinkwashing” it refers to the practice of companies who produce products that actually cause or increase the risk of cancer paying for a pink ribbon – a “for the cure” stamp of approval – which then leads people to further purchase these cancer causing products, consume them and actually feel good about it). Pinkwashing is bad. But perhaps one of the most horrific things that Komen does is to to claim that they are “for a cure” and yet only donate somewhere between 14% and 19% of the money they raise in the name of a cure to research. (Some years Komen has raised nearly $400 million dollars – just think that if instead of only donating about 14% of that money to research, they donated 50% or 80% . . . now that would be something, wouldn’t it)?

See . . . this is all I feel comfortable writing about. It IS important to tell this story of Komen – the very true, very wrong story that IS Komen.

BUT, I have a life. And that life is one that has become increasingly difficult to share about here, online. I have felt guilty about not sharing here. I feel as though I have abandoned a commitment that I made. There are a group of women bloggers who are devoted and passionate about writing – this is true awareness (and it is awareness that Komen does NOT provide). There are women that have taken up the cause in every way and continue to do so, they don’t give up – women like Anne Marie at Chemobrainfog, Kathi at The Accidental Amazon, Phillippa at Feisty Blue Gecko, Nancy at Nancy’s Point, and so many others (I have so many to add to my “blogroll” here. In fact, my next post will be a list of bloggers I think you should follow, that I wish I had more time to follow). And sadly there are so many newly diagnosed women who are now joining us here on the blogosphere.

In the beginning I wrote to let family and friends know how I was doing. It was far easier than making phone calls since most of my days were about fighting with my insurance company and simply keeping up with treatment and the sometimes 6 medical appointments in one week. It was a full time job.

Now as I have returned to my real full time job there are many adjustments to make. It has been hard. There was a cancer scare last summer that seemed to trail into the fall and take over the past several months. Fortunately all turned out well. But, it was a series of tests, biopsies and finally a surgery to remove the (thankfully) not so offending tissue. It wasn’t fun. But, as the anesthesiologist told me before I went into surgery last month, “this will be a breeze compared to what you’ve been through”

LOL

I didn’t know whether to find peace in that statement or to simply cry. I did take solace in that whatever was coming was not going to be as bad as whatever had happened before. But, it did really strike a chord with me – that this surgery was going to “be a breeze”. My life since 2009 has been anything but a breeze. But, whose life is? I recall days I could barely walk and the friends that would take me on walks because I couldn’t go alone and so desperately wanted to walk . . . they went with me, walked as slow as I needed to go so that I could get that mile in if I could. Those were some days.

And now I can run. And now I can work a forty hour work week (and then some). And now I am getting my life back. But, there is an expense that comes with that – a lack of balance I guess. I am grateful to be rebuilding a business I had to close down because of cancer. I am grateful for the opportunity to start over. But, I am tired. It is so hard and it is so difficult.

To be reliable in my business, I have to be unreliable in my personal life. That stinks. I hate that. But, what choice do I have? I have been clawing my way back with every ounce of my being to regain whatever I can – physically, financially. To do those two things I have little time or energy for anything else. I am trying to create a new version of my business, one that will fund a more balanced life. But, until then I am working very long hours after which I pretty much just go to bed. I communicate with few people and go out rarely other than work related things. I am determined, so determined to get my life back. But, I am grateful for what I have today and I am hopeful for a future that enables me to do more of what I want.

I miss spending time with friends and family. I miss having time to connect with my friends and family. And, I miss writing here too. I hope to be back in more ways than I am now. But, I am here and so grateful for that. This most recent birthday was amazing. I truly did not think back in early 2009 that I would be here now in 2012. I will never forget what my doctor told me when I asked her if I could survive this. She said, “The best thing in your favor is your youth and that you are physically strong . . . fight”

Those were chilling words for me. When I pressed for statistics I was told not to think about numbers (of course this was because the numbers for me were not good). But, that time is gone now. Those days are over. And now I look toward a future where hopefully I will remain cancer free.

It is hard to keep your eye on that prize sometimes . . . I have lost three friends to cancer in this past year alone. I have seen two more friends diagnosed with cancer. It is an epidemic and it seems to be one that is affecting younger and younger women. Of course I am no scientist. I am simply going by what I see. We need to do something. Komen is not it. (I know, I always come back to that). But, clearly what they are doing is not working. We need real money going to a cure. We need research funded for all types of cancer and in particular – the kind that kills – metastatic cancer.

Well, now maybe you will understand why I haven’t posted anything here in so long. This ramble, jumble of a post is going to be posted. To those of you who have been unable to reach me, who I haven’t called back, or been able to see, please understand why and please accept my apologies. I hope that next year will be one where I am able to have more balance and  can do more than simply work 🙂 But, I AM so, so, so very grateful I am able to work like I am right now. It is wonderful.

I wish everyone a wonderful holiday. I will be spending mine with my family – we will be doing our third annual Tappas Christmas (that is how I celebrate Christmas now post cancer – no more boring turkeys or crown roasts for this girl . . . I’m mixing it up).

Much love to you all and thank you for your continued prayers.

Lisa

P.S. To everyone who has tried to reach me, please keep trying and don’t give up on me. It is not because I don’t love you, I am just doing the best that I can. Things will get better 🙂 I appreciate your understanding. Happy Holidays.

Me and my niece last summer :)

Me and my niece last summer 🙂

Komen Only Responds When the World Notices . . .

9 Mar

Like many nights, I could not sleep last night.

So after tossing and turning, I decided to open up my trusty laptop and catch up on some things. I opened my email account: nomorecancer4me@gmail.com

(I know, it has a nice ring to it, doesn’t it)? If we could all just wish ourselves to being well forever, now that would be something.

Anyway, I digress.

To my shock, I received an email from Julie at Susan G. Komen at Orange County. WOW. Her email was in response to my post of last October asking Susan G. Komen to leave me alone

Here is what Julie had to say (and to be fair – you might want to read my post above first):

“Hi Lisa,

 I’m writing regarding a blog post of yours referencing our affiliate:

 https://cancerfree2b.com/2011/10/31/komen-please-leave-me-alone/

I’m very sorry to hear your frustration with us. I am new to Komen and was disappointed to read about how you weren’t able to get help from us in the time you needed it most. In reading your post, I understand that you would like for us to no longer contact you. My guess is that you registered for one of our Race for the Cure events and are now on our database. Did you register with the “nomorecancer4me” e-mail address? Just trying to make sure we take you off of our list per your request. Rest assured I want to do everything in my power to make sure this doesn’t happen again.

On a personal note, I wish there was something we could do NOW to rectify this. I am very sorry for how things turned out. Again, being new to the organization can only do what I can now.

If there is ever anything I can do to help, please feel free to reach out.”

Julie A. Guevara

Manager of Marketing & Communications

Orange County Affiliate of Susan G. Komen for the Cure

T: 714.957.9157 Ext. 30 | F: 714-619-2678

Wow, do I ever have a post coming in response to this. For now, I will simply share some of what I wrote to Julie at 3:00 am in this morning.

“Hello Julie,

 
So, let me get this straight – the person (you) who was chosen to respond to me is someone that is “new” and can only “do what you can now” which is apparently limited to taking me off of your email list? I am sorry, but, this is so sick to me.
 
You say that, “on a personal note” you “wish there was something that Komen could do NOW to rectify this” . . . Okay, I am ALL ears . . . what can you do, what can Komen do, to rectify this? How can you help me “NOW” as you put it (the emphasis was yours)?
 
I received nothing from Komen. I spent what little energy I had during treatment barking up a tree that your organization encouraged me to bark up and instead of getting any response, I was simply ignored. Where do all the millions go? Rachel was on to Komen long ago. And now, since the Planned Parenthood fiasco – many others are too. I am not alone in my outrage.

Please understand that it is hard for me to even respond to your email when I feel that the only reason I am finally, now, hearing back from anyone at Komen is due to the fact that I spoke out, spoke the truth and that this truth got traffic. It was fine to ignore me when I was weak and sick . . . too weak and too sick to spend precious energy writing the truth. I may be broke now, but, I am strong and I am angry – not at you personally – but at the fraud that I believe Komen has become.

 
But, since you asked me to “reach out . . . if there is anything you can do” . . . well, I am reaching out NOW (AGAIN). Finally, after two years someone has responded to me directly. Sadly, it only happened after my blog post received thousands of visitors (this same post still receives thousands of visitors and gets retweeted around the world). I would love to be able to tell a second truthful story about Komen that paints a different picture – so here is your chance, Help me. Help me like you (your organization) claimed you would help. Come through on the promise that was dangled in front of me, that caused me to call over 100 times to the help line that NO ONE EVER answered.
 
As anyone who has been through cancer knows, it wreaks financial havoc. I had to shut down a business for nearly two years, I ran through all of my savings, I no longer have a car that is working properly, I am broke. I can not afford to maintain my health insurance. I can not afford my prescriptions, I can not afford the gas it takes for me to get to my oncologist. I needed help when I was going through treatment and I need help now. The stress of unpaid medical bills and the stress of not being able to make ends meet is a great burden. Stress is not good for anyone, and it is especially not good for cancer patients.
 
So, what can Komen do for me? I don’t need pink ribbons, I don’t need 5k walks with rose ceremonies. I need something concrete, something tangible. We all do. In 1994 I lost my Aunt to breast cancer. I found it odd back then that your organization didn’t seem to be able to do anything for her, no support. And yet, after she passed away, I ran your 5ks in her honor, thinking, believing – like so many – that this would somehow make a difference to women in the future. After all, you are “racing for a cure” right?
I am not saying Komen has done nothing good. I am saying that Komen does not do enough AT ALL. The money is squandered. At least that is what I believe. And to brag – as your organization bragged in 2009 and 2010 when I was going through chemo and radiation – that you helped women financially – and yet you never answered the phone – well, that is just about as ugly as it can get. (And by the way, this is the only phone number that was provided at the time and only point of contact for all of this financial assistance your organization claimed to provide. There was no way to leave a message, no email contact, no online form to fill out to ask for help – those things only exist for your donors. There are plenty of forms and live people to reach if you are a donor – why you are simply a click away to those who want to donate money).
 
I am angry. (I am sure you don’t need me to tell you that). I am not personally angry at you. But, I am angry at Nancy Brinker and I am angry at the organization that I once blindly (as once did my family and friends) supported. Many people are angry and share my outrage at being mislead. I want to see a different Komen.
 
You told me to “reach out” to you for help. I need help. I am reaching out. So I will wait to hear back from you. 
 
Please help me.”
 
So, that is basically what I said (at 3:00 am). Not the most well thought out email and perhaps I should have saved it as a draft and edited a bit before I sent it out. Had I taken more time, I would have addressed this point in Julie’s email to me:

“Just trying to make sure we take you off of our list per your request. Rest assured I want to do everything in my power to make sure this doesn’t happen again.”

So Julie’s big concern is that she makes sure “this never happens again” – that Komen never hits me up for money again. WOW. I see their point, why should they waste their time asking me for money when they know they will NEVER get it from me again? But, why is it that Julie is not concerned about making sure there is a person to answer their phone at the number Komen provides in their claim that if you call that number you can get financial help? Why is it that Komen never responded to me, EVER, until my blog post was read by thousands? Why is that when they do finally contact me, that it is a person from marketing?

Hmmm . . .