Archive | March, 2012

AWOL (A Way of Life After Cancer)

30 Mar

Hello All,

I was recently asked to join the board of “From Chrysalis to Wings” which is a non-profit that assists cancer patients. The organization is completely volunteer run – no one takes a salary. From Chrysalis to Wings puts on The AWOL retreats (A Way Of Life after cancer retreat). These retreats are restorative retreats for women cancer patients. “From Chrysalis to Wings” has been putting on these retreats for the past ten years and has served thousands of women.

I was fortunate enough to be able to attend one of these retreats and it truly changed my life. It is hard to explain the effect of these weekend retreats, but, it was truly profound and life changing for me.

As a result, I am very passionate about helping this wonderful non-profit be able to host more retreats and to provide more support services to cancer patients.We have a fundraiser next weekend. It will be held in Oceanside – so any of you who are local and are interested in attending – please let me know and I will get you the details. I also have a few extra tickets that I purchased and want to give those to anyone who would like to go. It is a lunch and “Quartermania” event. Lunch is provided in the cost of the ticket. It is a fun event and is for a great cause. The “Quartermania” is a type of auction where items are auctioned off from one up to four quarters per item (everyone who is interested in bidding on the item parts with the requisite number of quarters – 1 through 4 – depending upon the value of the item being auctioned off – and then one person is selected to win the item). There are ten vendors who each are bringing ten items for the auction. The auction is fast paced and fun and guests are able to win items worth as much as a $100.00 for just a few quarters.

In addition to the auction, we will have opportunity drawings and are in NEED of items for the drawings. All funds raised at this event will go directly to cancer patients . . . 100%

We really need items to auction off – so if anyone has a business that would like to make a donation – please let me know. This is a 501c Non-Profit and we will provide all documentation of your donation so that you can have the tax deduction. If your company would like to donate money for a gift basket, that is an option as well (we will put the gift basket together for you – for a $100 – $125 donation). I am currently reaching out to Target and Home Depot for gift cards. I am new to this, so any suggestions or ideas – I am all ears (and fortunately the existing board is amazing and they DO know what they are doing) 🙂

If you would like more information, please contact me at: nomorecancer4me@gmail.com

Here is the flyer for next weekend’s Quartermania: Quartermania Flyer

Here is a link to purchase tickets if you are able to attend: Quartermania Tickets

Please contact me if you think you might be able to use one of my tickets.

Love and peace,

Lisa

 

Happy St. Patrick’s Day . . .

18 Mar

It has been a pleasant day. Enjoyed some of the rainy day in doors and took a trip out to the Aquarium of the Pacific in Long Beach in the afternoon. It was a very peaceful day. Those are not always easy to come by these days. So I am grateful.

Here are a few pictures from the day (oh since it is St. Patrick’s Day, here is my version of: Danny Boy . . . the words have a new meaning to me these days):

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More on Julie of Komen . . .

17 Mar

So, if you have been following my blog as of late, you will know I have – after three years – finally heard from someone from Komen. I posted Julie’s latest email two posts ago. I responded to her here on my blog. But, upon further thought decided I would respond, again, to her personally (even though I feel it is likely a complete waste of time). So, here is my reply to Julie (brace yourself, I am not happy about the fact that I STILL have not heard back from anyone in Komen’s financial assistance program – still only PR & marketing – which I feel speaks volumes):

Supporters of Planned Parenthood

For so many women PPH is the only place where they can get screening for cervical cancer and breast cancer. Thank you SGK for pulling the plug on PPH because you only encouraged others to help fill the void. Then after you were shamed into returning the funding to PPH - has both your funding back and the funding of those who sought to fill the void you intended to create by abandoning PPH. I am ecstatic that you pulled the plug on PPH as it has wakened the world to how SGK has truly lost its way.

Julie,

I posted a copy of your email on my blog and included a reply to you there. I believe that you believe in Komen. But, I think you fail to see that Komen has lost their way. The rest of the world has pretty much caught on to this fact. My personal experience is not unique. And, sadly, it is the tip of the iceberg.
 
In any case, as I said in my reply on my blog, your organization wears me out. In my opinion, Komen is nothing but smoke and mirrors and double talk. You told me in your first email to me that you “wished there was something that Komen could do to ‘rectify the situation’ now” . . .
 
And, you asked me to reach out to you if I needed help. So, again, in response to Komen’s invitation (this time, by you personally), I reached out and instead of any help, you simply reply with a defensive email – without any sensitivity to the fact that your organization failed me and has failed countless women in the same fashion.
 
You/Komen wear me out because you keep making promises and invitations for me (and scores of others) to ask for help and then when we do, your response is to ask me how you can help. Do you understand how frustrating and pointless this is to me and to the many, many other women who have contacted me telling me that their experience is the same?
 
Instead of defending yourself by saying that you were not at Komen in 2009, why not try to fix the problem. The phone number doesn’t work, no one has EVER contacted me from financial support, not EVER. All I get from Komen are constant requests for me to donate money to your organization and now, finally, after thousands of people have viewed my blog (a blog that does not cast your organization in a very positive light) YOU (someone from PR and marketing) respond to me. Your response is completely empty in my eyes. How dare you ask me how you can help me and then when I tell you how you can help me, you get defensive and do not respond to my request for help except to AGAIN ask how you can help me . . . this is so completely illogical and circular and crazy making. Stop wasting my time – I might not have much time left – don’t you people get that??? How dare you/your organization dangle help, mislead me and so many others into believing that it is worth our time to call and waste our energy on trying to reach someone for help through your organization. It is a complete joke.
 
And just as so many of us out in the blogosphere suspected, Komen has a whole staff of people whose job it is to “be in the know” about what is being said about your organization. PATHETIC. It is very clear to me that your organization is far more concerned about protecting its brand and money making machine than it is about a cure or helping breast cancer patients.
 
I do not understand why you are not getting this in front of someone who can fix the problem – that no one can reach anyone on your “financial assistance” phone number . .. why is that?
 
I am not going away (unless cancer takes me away) and I promise you that I will keep spreading the truth about your organization. I just hope that one day the truth will be that real money goes to a cure (instead of a paltry 14 to 19 percent), that your financial assistance phone number is one day answered by an actual person or at least a voice mail that allows a person to leave a message, that you will provide a contact form or email to breast cancer patients who are seeking (by your organization’s INVITATION) financial help, that your organization will start making funding decisions based upon women’s (and men’s) health instead of politics. (I understand that Komen pulled 12 million dollars in research funds last year to research facilities that had anything to do with stem cell research, is this true)??? That is what I heard. And then of course, there is the recent Planned Parenthood fiasco. 
 
Do you realize what cutting millions of dollars from research facilities that engage in stem cell research means? It means that top, leading research facilities do not get money from your organization – all around the world leading research organizations are involved in stem cell research – so your organization is cutting funding (as I understand it) from the very places that might be most likely to develop leading, cutting edge treatment and possibly a cure.
 
Your new tagline: “We Are the Cure” makes my stomach churn.
 
I will not let up. You have no idea how many of us are outraged that it took three years for your organization to contact me and that the person who finally contacted me only did so in response to the traffic my story received AND that this person was from PR/Marketing. You may have the best of intentions, but, I hope you can understand and appreciate why so many of us are disgusted by all of this.
 
I realize you are not responsible for Komen’s funding decisions or for the fact that no one ever answered one of my over 100 phone calls to the financial assistance line. But, you work there now. So, I hope my story (and the fact that it is absolutely not unique) will wake you up a bit to the realities of the machine you work for and maybe inspire you to work from within to make positive change.
 
I can only hope for this.
 
Until then, I will (along with scores of others) continue to write. So, I guess we are going to keep you pretty busy staying “in the know about what is being said about Komen”.
 
Best,
 
Lisa

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St. Patrick’s Day . . .

15 Mar

A dear friend of mine wrote this poem and shared it with me last year. I re-read it today and it made me think of Rachel and of Christine and my Aunt Anne. So, today I am dedicating this to all of those we have lost. Such beautiful words from a dear friend, whom, until last year, I never knew was such a great poet.

English: Trifolium repens ?

Image via Wikipedia

On This St. Patrick’s Day 

It’s that time o’ the year when I miss them the most
And their memories return like the touch of a ghost.
They are gentle yet painful, like lovers apart
… When you whisper their names they are breaking your heart.Now I see them before me, their laughter and joy
Is a welcome reminder when I was a boy,
When the future ahead was a dance and a song
And we’d be there forever all singing along.

But the future becomes present, and present the past
And Time’s not your friend and Death does not fast
For they work hand in hand ‘till they steal it away
And there’s nothing but tears on your St. Patrick’s Day.

So to those that you miss, give a thought and a prayer
And to those that you love, a kind word that you care
And we live with the hope such a fondness will last
For we all become memories in somebody’s past.

terence a’ mcvicker

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Komen Koolaid . . .

11 Mar

So, Julie of Orange County Komen sent me an email in response to my email in response to her email in response to my blog post: Komen Please Leave Me Alone

Here is Julie’s/Komen’s response to me (first, you may want to read the post below, from Friday):

“Hi Lisa,

I was not the person “chosen” to respond to you. In my position, it is my responsibility to be in the know about what is being said about our organization; your blog past came to me in an alert as did the post you shared with everyone today. My concern was not just to remove you from our list (however it is also my responsibility, along with one other person here to make sure people who do not wish to receive our information are removed from our list), but to reach out to you as a genuine human being, but as someone who can understand the frustration of trying to get help.

Again, I’m very sorry for the response you got from our organization in 2009. I was not here at the time and like I said, just a person trying to do what they can now. Tell me how I can help and I’m happy to do what I can.

 My contact info is below:

Julie A. Guevara

Manager of Marketing & Communications

Orange County Affiliate of Susan G. Komen for the Cure

3191-A Airport Loop Drive

Costa Mesa, CA 92626

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

Our Vision: A World Without Breast Cancer

BEST SCIENCE. BOLDEST COMMUNITY. BIGGEST IMPACT.

WE ARE THE CURE”

First of all, I love the “Best Science, Boldest Community, Biggest Impact. WE ARE THE CURE”(sic)

English: Mahindra 6030 Turbo tractor in downto...

I wonder how many women rushed out to get a mammogram after seeing this pink tractor . . . am I the only one who thinks pink porta-potties, tractors, golf carts, etc. in the name of "awareness" are a waste of money? Of course i am not. Sigh.

So there you have it. NO ONE from financial assistance can bother to get in touch with me, to answer my calls, to email me back, etc. But, it is apparently Julie’s “responsibility to be in the know about what is being said about our (komen) organization” and her other job is apparently “along with one other person” to make sure they remove me from their email list. Wow. Now that seems like a great use of “race for the cure” (TM – wouldn’t want SGK to sue me) dollars, doesn’t it?

Okay, so, giving Julie the benefit of the doubt here – she says she was not “chosen” by Komen to contact me and was instead contacting me as a “a genuine human being, but (sic) as someone who can understand the frustration of trying to get help” (her words, not really sure about the grammar here, but, I think she is simply trying to say that she cares).

Okay, well then DO something. FIX what is clearly BROKEN. Komen claims to provide financial assistance to breast cancer patients, provides a number for breast cancer patients to call – but, NO ONE ANSWERS the phone number!!! HELLO???

I am sorry Julie, but, I am unimpressed with your response. And as far as your asking me what you can do to help, I think I have made it pretty clear in my prior email to you. And, in fact, I asked you what YOU could do to help me NOW (since you said that you wished Komen could help me now; wished Komen could somehow “rectify the situation”).

And, still you reply with – let me know how I can help you? I find this disingenuous. Your organization exhausts me. It is smoke and mirrors and a bunch (in my experience) of getting the run around. I asked YOU how you could help me. I told you what my needs at this time are . . . and I got the above reply. Do I expect Komen to jump in and pay all of my bills? No, but, if you truly care, then why is there no interest on your part to at least look into the broken phone number, the fact that there is no form on your website or email for cancer patients to contact you for financial assistance – and yet your organization brags about providing financial assistance to breast cancer patients in need. Please understand this: your organization invited me to seek financial assistance through Komen’s financial assistance program. I got no response ever. I called over 100 times. My story is NOT unique. I have heard from many women who were treated the same way.

Instead, I feel you have just sent me a defensive reply about how you were not employed by Komen at the time I originally sought help. So what? You work for them now. I realize this may all be out of your job description – but, the very fact that this may be the case, shows how broken Komen has become.

But truly, this is my favorite quote from Julie’s email:

“Again, I’m very sorry for the response you got from our organization in 2009″

Response? Julie, I did NOT GET A RESPONSE IN 2009, or in 2010, or in 2011.

I told you before that I was not angry with you (in my previous email). But, I have to say that now, I am a little angry with you. I don’t like the spin, I don’t like the fact that I am hearing from someone from marketing and PR instead of someone who is in a position to address my experience.

I think you have simply drunk from the Komen KoolAid.

If you truly want to help me, truly want to make a difference in some breast cancer patient’s life, then work on fixing the problem. And, if you are not in a position to do so (I understand that your job is in marketing and PR and to search out the web for what is said about Komen – which right now must be keeping you mighty busy) then get this in front of a person who CAN fix the problem.

I will be sure to include the appropriate tags for this post so that you get an alert as soon as possible.

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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 . . .

 

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