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):
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):
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,
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.
Image via Wikipedia
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
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)
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.
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.
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.
“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 . . .
The breast cancer world, and the world in general, has lost two amazing women in two days.
Here are the links to their blogs:
Rachel of The Cancer Culture Chronicles and Susan of Toddler Planet
We really do need to “race for a cure”. I am so very, very sad today. My thoughts and prayers go out to the families and friends of these two remarkable women.
Please send your prayers out their way too.
Peace and love and hope,
Lisa
There once was a disease that killed many,But, then big pink cured it with money.Oh, wait that’s not true,It still kills me and you.Does Brinker think me a big dummy?(I wrote this snarky limerick last year, but, thought it fit for today . . . Nancy Brinker is proving she is more about politics than women's health.
I wish I did not have to work today. I wish I did not have to work at all this week or next. Because if I didn’t have to work, I would spend every minute of my time responding to The Susan G. Komen Foundation’s latest and greatest (and by far their most transparent move ever): pulling the plug on funding to Planned Parenthood.
But, unfortunately I do have to work today. So here are a few links to former posts that shed a little light on what Komen is, in my opinion, and the opinion of many others . . . truly about. Also, please see below for what Breast Cancer Action says about Komen’s latest move and please, please, please sign their petition (you will find a link to it at the bottom of this post).
Please check these posts out:
An absolute MUST read: A post about where Komen’s money really goes by The Cancer Culture Chronicles: Komen by the Numbers (check out the pie chart on where SGK’s money goes . . . it is a real eye opener).
My post on how SGK abandons breast cancer patients during their time of greatest need. Another post of mine (simply because I like the title of it: When Pigs Fly)
Another post of mine about Nancy Brinker’s toxic perfume and her refusal to take it off the market after the toxic chemicals (chemicals linked to causing cancer) were made public by an independent lab who tested the “Promise Me” perfume.
And here is a post showing just how little of the purchase price of Komen’s Promise Me Perfume actually goes to ANYTHING by Katie Ford Hall at Uneasy Pink
And if you are interested in some poetry, here’s some of my Komen inspired poetry.
Like I said, I wish I had all day, all week, all month . . . I wish I had all year to spend on this nightmare of a fraud that Komen has become.
Please see what Breast Cancer Action has to say about Komen’s latest funding cut:
“Women’s healthcare is under assault once again. Susan G. Komen for the Cure is pulling all funding for Planned Parenthood, an outrageous decision that threatens women’s access to vital health services. But what’s particularly concerning is this funding cut will impact underserved communities most . . . Planned Parenthood provides vital health services including screening, clinical exams, referrals for ultrasounds and biopsies, and breast health education, often to women who do not otherwise have access to healthcare. One in 6 women of reproductive age get their healthcare through Planned Parenthood.
We believe all women should have access to the same healthcare. The care a woman receives should not be based on the type of insurance or financial resources that she has or does not have access to—or political agendas. Women’s health is women’s health, period . . . Organizations that are truly committed to women’s health must put women’s health before politics. We stand with Planned Parenthood in our shared commitment to putting women’s health first.”
Breast Cancer Action has a link (see below) where you can sign a petition demanding that SGK return the funding back to Planned Parenthood.
Please sign the petition. Please stand up, please let SGK know that they are WRONG.
All the best,
Lisa
Hello all,
First of all, thank you so very much for your prayers and positive thoughts. It means so much to me and to my family.
I had an MRI on Tuesday and just got the results a few hours ago (online via WebMD). I checked my email and had a notification that something was uploaded for me on my WebMD account. I knew it was the results of a test and so logged in, while praying and hoping for the best. The report was long and included my history (an interesting read – being reminded of all that has occurred, all that has happened to my body in the past nearly three years now – is kind of surreal – seeing it relayed in medical terms, devoid of any emotion (of course) and in black in white is really weird). But, I digress.
The results are no evidence of disease (as in NED). Which is great news.
I am still waiting on a few other tests, but, so far so good.
I see my oncologist on February 9th (it is my hope to complete a 1/2 marathon on February 5th – pain be damned, I want to be able to report to my oncologist that I completed it when I see her on the 9th). I have not properly trained for it . . . too many pain days. But, so what, I will do what of it that I can.
We don’t have an answer as to where the pain is coming from and I fear that this will launch further scans . . . and at the same time, I fear that this will NOT launch further scans . . . it is an odd position to be in. I don’t know where the pain is coming from. Maybe it is from the Tamoxifen, maybe it is just after effects of all of the treatment. I am told I shouldn’t be in pain and that is why my oncologist has ordered tests. But, at some point, I wonder if maybe we figure that this is just where my body is at . . . I don’t want any cancer related explanation of the pain other than it is an after effect of the treatment or is related to Tamoxifen. Plain and simple, my bones hurt. I wake up in a lot of pain each day. But, for the most part it lessens after I get going and just work through it. Then it returns usually at the end of a day. Maybe that is just how it is for me, maybe this is normal for me for now? I can deal with that. I hope that it is nothing and I both hope that my oncologist will not order additional scans and at the same time, hope that she will . . . because I just don’t know why my bones hurt.
It is what it is. My worries are no different than anyone else’s who has been through this cancer escapade.
I am so grateful for so many things. Just a year ago, I could not do half what I am doing today. And two years ago, I was barely getting around, still in bed and struggling each day to get in a walk and to just get through each day. I am most grateful for all of you, for my family (both on and offline). You have all helped me so much. Your prayers, your support, your love, love your well wishing . . . it is all very powerful and makes such a difference to me. Thank you.
Peace and love,
Lisa
Haven’t had much to say lately. There have been a lot of reasons for that . . . being busy with work, being in pain (which I think is probably . . . and hopefully . . . because of an increase in work hours and just simply the fact that I am doing more and more).
Tomorrow I have a breast MRI . . . a bit odd, since I no longer have breasts. But, I do still have some breast tissue (after having reconstructive surgery) and since I have had pains in my chest my oncologist wants me to have the MRI. I have some other tests, that I am not so worried about. So tomorrow will be a medical day (used to have so many of those). I hope that tomorrow’s results will be good.
This is a picture from one of the last road trips I took before the cancer roller coaster began. It is time for a weekend get away . . . soon.
I will be going to the hospital where I had my first breast MRI almost three years ago now. It was the day that I found out that the cancer in my right breast had unfortunately spread to my lymph nodes and was invasive. It was a tough day. It was the kind of day that so many women (and men) have experienced and continue to experience.
My Aunt Ann died of breast cancer in 1994. And, to this day, there is still no cure and very little change in the survival rates. Some make it, some don’t. Some get it some don’t. Some get it a second and third time, some don’t. Not a lot has changed. And anyone who has read my blog, knows all about how I feel about Susan G. Komen’s “Race” (sic) “for the cure” (sic).
Still, Herceptin became available since my Aunt’s passing. I am lucky. I am still here because of the availability of that drug.
And when I think back to almost three years ago, going in for my first breast MRI (back when I had breasts, breasts that were apparently trying to kill me) I already knew that I had breast cancer. I already knew that I had “the bad kind”. I already knew that despite the fact that I felt no lump, and that my doctor’s felt no lump, the cancer consumed most of my right breast. How could that be?
I had dense breast tissue. And, I had a fast growing, aggressive form of breast cancer. On the initial mammogram that detected it, it was like a spider web like appearance, something that was ultimately called “multi-focal” breast cancer (meaning multiple locations and diffuse). From my understanding of it, that is part of why I did not feel anything and why my doctors did not feel anything abnormal.
That is something that still floors me . . . that I never felt a lump, that my doctor’s never felt a lump.
Women need to know whether they have what is called “dense breast tissue”. We need to know this because it a) increases a women’s risk of getting breast cancer and b) it makes detection harder . . . which can mean a later diagnosis.
I also want women to know that there are other signs of breast cancer than simply feeling a lump. I had breast cancer for some time before it was detected. We know this because, looking back, there were symptoms.
What I did feel was exhaustion. I was tired. My body was, after all waging a war, fighting. I also had night sweats. And when I say night sweats, I mean waking up completely soaked, drenched kind of night sweats.
I brought these concerns to my primary care physician and he told me that I was probably going into early menopause. I didn’t really trust this, in my gut, I thought it had to be something else. Still, not in my wildest dreams did I think it was breast cancer. But, about six months later, in a mammogram, I found out the real reason why I was so tired and having night sweats.
I say this here because I want everyone to know what my primary care physician did not know: that night sweats and exhaustion can be signs of breast cancer. My doctor dismissed these symptoms as being attributable to “hormonal changes”. I had Estrogen and Progesterone responsive breast cancer. So there definitely was something hormonal going on. But, my doctor never looked into any other possibility. My oncologist tells me that these were very common signs of estrogen responsive breast cancer.
We trust our doctors, or at least we want to. I knew in my gut that my doctor’s explanation of my night sweats and being tired was wrong. In fact, he told me to take supplements that would have actually increased the estrogen in my body (thinking that my symptoms were from a drop in estrogen). I would imagine a simple blood test could detect hormone levels . . . at least I would think. But, none of that was done. I didn’t take those supplements (fortunately – because increasing estrogen levels would only have fed the cancer I already had at that time). But, I also did not trust my gut enough to seek out another doctor. And I didn’t know I had dense breast tissue, and I didn’t know that night sweats could be a sign of breast cancer. And, unfortunately, my doctor did not know either. (By the way, I have a new primary care physician).
I have spoken to so many women lately who have either put off having a mammogram (have never had one yet and they are years past 40) or that they just haven’t had one in a few years. And, in further talking with these women, not a single one knew whether they had dense breast tissue.
There is legislation being contemplated to make it a requirement that patients are informed as to whether they have dense breast tissue. This would go a long way to better detection, earlier detection and hopefully prevention (if a person knew that they had dense breast tissue, then perhaps extra precautions could be taken to help prevent breast cancer. And, it would be a basis for patients getting better imaging – a breast MRI, for example, rather than relying on a mammogram that may not detect cancer in a patient with dense breast tissue until it has spread farther, become bigger, become more visible).
So, get a mammogram and when you do, ask the radiologist whether you have dense breast tissue or not. And be aware of your body, trust your instincts and if you think your doctor’s explanation of something is not right, then go see another doctor.
Well, it is now already tomorrow (this post has taken me into the next day). So I am hours from spending a chunk of my day back where all of this started. Hopefully all news will be good.
I appreciate your prayers and/or positive thoughts coming my way.
Love and peace,
Lisa
This year I could not have been more grateful for the month of October (aka: Pinktober) to end. Next year, my plan for getting through Pinktober (and SGK’s pink peddling and pushing) is to simply do all of my grocery shopping online and at local farmer’s markets. I want to limit my exposure to the sea of pink. And, I don’t want to be asked again at a grocery store checkout stand if I want to donate to Susan G. Komen “Race for the Cure” [sic] (And by the way, I mean “SIC” as a double entendre).
Just one of the many pink products sold all year long: a Komen Pig Note Pad. But, take a closer look below . . .
When you’ve had breast cancer you have a whole different insight into the world of pink ribbons, pink products, 5ks and three day walks and so on that are all supposed to raise money for a cure and to help women (and men) with breast cancer. I used to think that SGK was using their money to benefit women with breast cancer and to help find a cure. But, I learned quickly, the hard way, that SGK will not be there for you if you need their help. See my earlier post on how SGK abandons breast cancer patients and leaves us in the cold. (I personally called SGK’s advertised phone number that breast cancer patients are invited to call for financial help over 100 times) and not once did I ever reach a live person, not even a voice mail where I could leave a message – in my opinion – what they did – what they did NOT do – while claiming that they would do something – was fraud).
I know many people who love the pink ribbons and love the Susan G. Komen Foundation and their pink rose ceremonies and pink balloons and 5k walks and – sadly – they think that buying pink will help eliminate breast cancer . . . one day. They think that buying pink will somehow help someone like me.
So why am I talking about this in January now? I was out picking up some office supplies at my local Staples store and did a double take when I saw all of the Christmas displays and seasonal products for the holidays replaced with pink, pink, pink. Seriously? Is it necessary for this to be a 12 month thing now?
I decided to take a stroll throughout the store and take in all of the pink, just curious about whose name is on it and where this pink-breast-cancer-curing-money is really going. Nearly every product I saw at Staples that was pinked was done so in the name of the Susan G. Komen Foundation. Not much of a surprise really.
Maybe when pigs fly we'll have a cure . . . until then, by all means, let's keep "benefitting" SGK!
But, here is what really surprised me . . . they don’t even claim any more to be giving the money to “the cure”. Instead this is what the Susan G. Komen pinked products I found now say: “benefitting” The Susan G. Komen Foundation . . . at least they are being honest about it now . . . where the money from your purchase goes . . . “to benefit The Susan G. Komen Foudation”.
It certainly did not go to benefit me or anyone I know who has had, survived or died of breast cancer. I love this complete lack of accountability (not). I guess it is just par for the course. The sad thing is that people buy this stuff thinking, believing that it will actually lead to a cure . . . yeah, maybe when pigs fly . . .
cancerfree2b 