Tag Archives: cancer survivor

Reflections . . .

27 Dec

This was my third, cancer-free Christmas. Cancer free. That is something.

Every day is something new and amazing really, if I want it to be. And I guess that is the reason I am writing today. There are some things that I have lost to cancer (besides the obvious, which would be my breasts and my peace of mind). One of the losses, which is not necessarily a bad thing, is my patience for all things petty. I don’t know that I ever had tremendous patience for petty things. But, now, post cancer – post the days that were continually hijacked by pain, exhaustion, chemo, radiation and surgeries – I simply have lost my patience for, well . . . stupid, petty things. I have a very hard time with losing time or having wasted time.

IMG_4405

This is where I spent Christmas morning, watching and listening to the ocean and enjoying a beautiful, sunny morning. So grateful for those moments on the beach alone and so grateful to have my family come and join me on Christmas day 🙂

An example would be time spent arguing (especially arguing over something stupid). I marvel at how upset people can become over getting cut off on the freeway, or not having something go their way, or simply having to do something that they were not planning on having to do. My goodness. This past week has been such an eye opener for me.  I am so grateful for so many things, and I guess, I just can’t sweat the small stuff . . . it is amazing to me at what can throw someone’s day off, or make it “miserable” or bad. I know that it is all relative. But, really, if you have your health, you have SO much, so much.

I never thought that I took my life, my friends, my family, music, or a beautiful day for granted prior to cancer. And, I did not need cancer to see or to appreciate the beauty and love of my friends, family or nature. That being said, my wish is for another cancer free year (for all of us) and that we all slow down a bit, take life a little less seriously (which really means taking life seriously I think – as in enjoying life, not getting upset over minor things and recognizing that some things are truly minor).

I have made it a point to take more time out for the things that I enjoy. They do say that you should do what you love. I wonder if I had done more of that if I would have ever been sick. Who knows. I am not one to blame the cancer patient for getting cancer. But, I do know that I could have chosen to have a bit less stress in my life in the years preceding my diagnosis. And, as someone who would like to think that I have even an ounce of control over my health outcome – the idea of stress reduction (and that I can actively do something about that) perhaps helping prevent a recurrence is appealing to me.

So, that is my ramble for today and a bit of a New Year’s resolution too (something that I actually started several months ago) and that is to seek joy, seek love, seek peace.

Wishing you all the same.

Much love and gratitude,

Lisa

Tags: , , , , , , , , , , , , ,

Brinker Stinker: A Reminder of What Susan G. Komen is Not About . . .

5 May
Nancy Brinker

This is Nancy Brinker, clapping her hands, maybe she is applauding herself for a job well done (sic). Well I am one person who is not clapping my hands for you Nancy. (Photo credit: Wikipedia)

This blogging thing can sometimes feel like a burden. It seems that I never know how to begin or finish a post anymore. I want to write, probably need to write, and most definitely I feel a responsibility to write. Especially when it has been the kind of week this past week has been in the breast cancer community.

In the past week, two of my friends have had cancer return and a third friend, who has been living with metastatic breast cancer for some time, is now dealing with very severe health problems due to her treatment (to put it mildly, she is in a great deal of pain). This is part of the world of breast cancer. It is not the pink bowed version of things that the Susan G. Komen Foundation sells (mammograms and early detection equal a cure, etc.). Well, clearly mammograms and early detection do not equate to a cure.

And now, this just out: Nancy Brinker reportedly gave herself a 64% raise last year (see the Dallas News article here). She also claimed she was going to step down as CEO last year (amidst public outcry to do so).  And yet she has not stepped down – she is still listed as the CEO of SGK and – apparently right around the time she was reportedly going to step down as CEO – she instead gave herself a 64% raise – way to keep up with inflation, Nancy.

According to the Dallas Morning News: “The nonprofit’s latest 990 IRS filing shows that Brinker, founder and CEO, made $684,717 in fiscal 2012, a 64 percent jump from her $417,000 salary from April 2010 to March 2011.”

I wrote a letter in 2011 (that I also posted on my blog) asking the Susan G. Komen Foundation to leave me alone (I was tired of being hit up for money and tired of being misled). I think given the recent news of Nancy’s 64% raise that this earlier post is relevant. Here it is again: SGK: Please Leave Me Alone

I should note that since that post, Susan G. Komen’s “marketing” department contacted me via email on multiple occasions – apparently my blog post version of my letter to them got some traffic and so they felt the need to respond (even though my attempts to reach them over 100 times – yes, really…I called over 100 times – were ignored).

They never responded to my letter until the blog version of it started getting some traction and traffic (retweets and comments on a blog can get some attention and apparently it got SGK’s marketing department’s attention). While they finally responded, their response was not to deal with any of the real issues I raised, but instead to dissuade me from writing anything negative about them. In fact, the person who contacted me from Susan G. Komen told me that it was “her job to be ‘in the know’ about what was being said about Komen” . . . wow. She went on to tell me that it was essentially her job to deal with people like me.

It all seemed incredibly disingenuous to me. And, even a bit creepy. I felt a little like I was being stalked. And, truth be told (and I am ashamed to admit this) it did dissuade me from speaking out against SGK. I felt intimidated. I felt harassed. And, I just didn’t want to deal with any more direct contact from them. (Keep in mind, they sought me out and emailed me at my personal email associated with this blog – not an email I have ever given to them).

I have attended SGK’s race for the cure. The event is something that many breast cancer survivor’s enjoy. I can appreciate that. There is a “Survivor Ceremony” and many survivors, I am sure receive something positive from the event. My problem with it is that it feels like a huge fraud. I don’t just mean the fact that the money SGK brings in each year – all in the name of a “race for a cure” – is mostly spent on things other than researching a cure (in 2010 Komen put less than 19% of the 389 million dollars it raised in the name of a cure towards actual research) . . . it is also the phoniness of it all – the tunnel vision and the false portrayal that everything is fine, that we are doing enough about breast cancer, that women are surviving because of us (Komen) and aren’t we (Komen) great.

The fraud that I witnessed (in addition to what I outlined in my letter back in 2011) was the parading around of women who have had breast cancer and now speak as though it was some little blip in their lives – that now everything is perfect and all the while Komen seemingly takes credit for these survivor stories. It feels like a cover up. It stinks, no wreaks, of false promise and false hope. And, worse, it makes people complacent because they are lead to believe that Komen is really fighting for a cure when clearly the numbers do not add up to that.

It feels like Komen uses these women to further their spin that early detection will save lives; that mammograms will save lives. The truth is that some people get cancer and some people don’t. The truth is that some people get it and get better and some people don’t. The truth is that early detection or not, no one knows why some people’s cancer’s recur. Early detection is not a cure. But, Komen sells the idea that it is a cure – and all this really tells me (along with their failure to put even 20 percent of the millions they raise towards research) is that they have given up on searching for a cure . . . and certainly there is no “race for a cure” . . . not that I can see.

I really want to believe that Brinker started the Susan G. Komen Foundation with the real goal of ending breast cancer. But, the constant spin about early detection being essentially a cure is not only misleading, it means that SGK is content with the status quo. They are satisfied with things as they are . . . despite Nancy’s claims that she is not . . . actions speak far louder than words.

The reality is that if SGK wasn’t absolutely okay with things the way they are (okay with my friends dying, okay with not understanding why some women who are diagnosed with breast cancer survive and never have a recurrence while others – also diagnosed early – at some later point end up with metastatic breast cancer), then they would put real money towards research; they would actually race for a cure and they would fund research for the most underfunded area of breast cancer: metastatic breast cancer – the kind that kills.

I am tired of seeing my friends suffer, tired of losing friends to this disease, fearful of losing more friends to this disease . . . and I am also tired of being fearful of a recurrence. This is the side of breast cancer that Komen not only seems to ignore, but they seem to simply sweep right under the rug.

This little rant of mine is for Rachel Morro who died of metastatic breast cancer and for my friends currently dealing with metastatic breast cancer. Something has to be done. Just think, if even half of the the money that had been given to SGK in 2010 had been put towards research (instead of Rachel Morro of Cancer Culture Chronicles calculation of only 19% or Reuters calculation of only 14%) then nearly 200 million dollars could have gone to breast cancer research in just one year alone. Now that could really be something.

Komen raises millions of dollars each year in the name of a cure. In doing so, they are essentially siphoning funds away from breast cancer research. How can I say this? Well, apparently at least 80% of the nearly 400 million dollars Komen raised in 2010 went to something other than research. I highly doubt that donors expected 80 cents of every dollar they donated to go to something other than research for a cure. So, if that money had not gone to Komen, then it could have gone directly to actual research – it could have gone directly to what those making donations likely expected it to go to – to research for a cure. Research is what will lead to a cure – not mammograms, not awareness, not pink porta-potties and pink golf carts, not pink anything.

I am not against pink. I am just against the double talk and deception. You simply can not claim to be racing for a cure if you are spending less than 20% of the millions of dollars you take in – in the name of “ending breast cancer forever” – on research.

I expect to hear from SGK’s marketing department very soon . . .

Tags: , , , , , , , , , , , , , ,

Easter has become my Thanksgiving . . .

31 Mar

Last weekend I was invited to attend a blogging summit. The summit brought together cancer survivors (some 15 or more years out, some just a year out and some still in treatment). All of us blog or have blogged about our experience. We were also joined by medical practitioners (of many types: oncologists, radiology oncologists, naturopathic MDs, nutritionists, lymphedema specialists, nurses and and more) as well as care providers (who also blog) and other writers, journalists. I will write more about the blogging summit in a future post.

For now I want to simply say that being able to meet the amazing cancer survivors (some of whom I had only known online, in the virtual world, and some I had never met – virtual or otherwise) in person was truly incredible. I felt like I was meeting soul mates. There was just an immediate understanding of all things amongst us. That is the best way I can describe it.

There is a loneliness that cancer can visit upon you; does visit upon you I think (at least it did for me). I felt it most prominently four years ago – when all I wanted to do was to escape my body, run from it since it was, after all, seemingly trying to destroy me. It was a very strange sensation – one of being removed from seemingly everyone – despite the conscious and amazing presence that so many individuals in my life made to be there for me. I still felt so isolated. I was the one that could die from it and I was the one that had chemo coursing through my veins . . . you get my drift.

When cancer hits you are truly alone – at least with your cancer and your body. No one else has exactly the same thing, no one else will react exactly the same way (to treatment, to fatigue, to the pain, to the fear, to it . . . to cancer). No one can really tell you when you are in the throes of it whether you will make it or whether you will survive. And all around you there are both stories of survival and life as well as that of loss and death. And none of it makes any sense.

So back to the blogging summit. CTCA (Cancer Treatment Centers of America) hosted their second “blogger’s summit” in Arizona. I was fortunate enough to be invited . . . wow was I fortunate.

I met so many wonderful and amazing individuals at the blogger’s summit. To say that there is a kinship amongst those of us who are “survivors” and writers does not really quite capture it; not the depth of it anyway. It is something indescribable and quite frankly took me a bit by surprise. And, it is beginning to fill a void that I have felt for some time.  That sense of being removed from those around you; that loneliness . . . some of it that still lingers is melting away . . . a little. Meeting these wonderful people, with whom we have shared experience (that we wish we did not share) has helped me to feel less alone; less fearful.

The moment I became a cancer patient I became different. I was on the outside, removed somehow from everyone else . . . lonely.

At the summit we spoke about many things, there were presenters and questions etc. But, what was absolutely the most meaningful was the time with others who have been through, or cared for someone who has been through cancer (because they understand). We joked about cancer – not something everyone is comfortable doing. And we shared our stories, some of our fears and we talked about a future without cancer and survivorship. This was a room full of activists – women and men who want to spare others from having to either go through this disease or to at least spare them from having to go through it perhaps the way we did. And of course, we don’t want to go through it again ourselves.

I am so grateful for the time with these amazing individuals. And I look forward to these new friendships.

I am four years out from my diagnosis. I began treatment the week of Easter.

As someone who was raised Catholic, Easter has always had some meaning for me. But it is all the more meaningful for me now. Four years ago it was my first Easter with my youngest nephew . . . just a little baby then (who has now grown up into an exceptionally bright, talkative, engaging and delightful four and a half your old boy). That first Easter with him was very surreal.

A week into chemo, still a full head of hair (that was due to fall out) and the ever present thoughts of whether I would be there for his next Easter . . . all of that was surreal. I remember drinking up every moment with him and with my family that day. No one competed with me to hold him . . . the newest baby in our family. No one took him from my lap. No one. And although it was never said – we all knew why: it might be the last time I got to hold that baby.

I actively pushed away thoughts of whether he would he ever know his Auntie. But, I know it was a very present and real theme of that day, for all of us . . . for all of us except for the baby 🙂

Now he is four and a half. He knows his Auntie.

He pushes away pictures of me where I am bald and says “no, no, no”. . . he knows it is me in those bald photos. But somehow he knows that it was sick Auntie or at least not the Auntie he wants to see. And, in spite of the fact that some of those bald pictures with him are my absolute favorite, I kind of like that he now pushes those photos away . . .

These are a few of my very favorite pictures I possess:

April 2009, my nephew’s first Easter, a few days after my first round of chemo and a few weeks before I would be bald.

More of the same day . . . the only family member who could truly freely enjoy the day . . . what a gift he was and is . . .

July 2009, was still going through chemo. This is one of my favorite pictures . . . but, my nephew doesn’t like it 🙂 So I keep it to myself 🙂

So on Easter of 2009 I wasn’t sure if I would make it to Easter of 2010. Easter 2010 came, and I decorated Easter eggs for my nephew’s first Easter egg hunt. I was still in treatment then, very tired and still not sure I would make it to another Easter. But, again, my nephew, aware of none of these things, was an incredible source of joy and energy for me. Here he is delighting in his very first Easter Egg Hunt . . . that I was very grateful to be around for . . .

Happy Easter! My nephew Garrett, sheer delight!

Easter 2010 🙂

 

 

 

 

 

 

 

 

 

Happy Sunday and to those who are celebrating Easter, Happy Easter. I hope for many more Easters for all of of us.

Much love and peace,

Lisa

Tags: , , , , , , , ,

The Cancer Tunnel . . .

31 Jan

I went to see the genetics counselor this week. I saw her the first time when I was going through treatment. My parents went with me then, three and a half years ago now. I was told to bring a family member with me . . . especially if I could bring my Mom or Dad or both . . . “to go over our family history” . . . a cancer genealogy of sorts.

I was bald. I was too thin. I was pale. I was facing a lot of unknowns and trying to be strong for my parents and trying to . . . act normal. But nothing was close to normal. We all pretended pretty well. Jeannie, the genetics counselor greeted us and took us back into a room – a makeshift, mini living room . . . where people come and go and attempt to act normal.

Genetic testing

Genetic testing (Photo credit: Wikipedia)

Come on over and sit for a while and pretend this is all normal.

And yet, for so many, it is normal. It is what has had to become normal.

I remember being surprised by the almost evening time feel of that little room – no day light came through and there were no fluorescent, clinical type lights, but instead a small couch, a couple of chairs and a lamp  on a coffee table. It was this forced space inside the cancer center (just outside of this room are chemo beds, doctors and nurses and every clinical thing you could imagine . . . and lots of very sick people).

That day is largely a blur now – other than the odd juxtaposition of chemo beds, IV poles, cancer patients and medical staff with this little, dimly lit, almost cozy, forced space where we were gently guided by Jeannie through medical terminology and explanations of gene mapping. At the end of that session it was Jeannie’s recommendation (based upon my family history) that I have genetic testing. She knew it would be denied by my insurance company and attempted to prepare me for a fight . . . that it needed to be done and that she would help me through the appeal process (after the inevitable denial).

She had already helped so much – by educating me, my parents, but mostly by listening to my parents, answering their questions and being so gentle with them. My parents are brilliant people. Jeannie was everything they needed that day: smart, informative, calm, honest and gentle all at the same time. She was so kind to my parents and so understanding of their need for truth, but also for their need for hope.

10% was what I had been told . . . that I had a ten percent chance of being here today. Today. Wow. Incidentally, I did not share that statistic with my parents . . . or anyone at the time. However, it did and still does, affect how I live and think about my life.

This is me and my Dad – we are both cancer survivors 🙂 He is 83 years old.Me&DadSurvivors

As Jeannie predicted back then, my insurance company denied the request for genetic testing (to see if I carry the BRCA 1 or BRCA 2 gene). She attempted to prepare me to fight my insurance company. But, I didn’t have it in me to do it. I decided to preserve all of my energy for other battles (which were seemingly constant back then).

So this week I arrived back at the cancer center, with the infamous “cancer tunnel” (yes, they call this very long walk way that takes you from one part of the facility to the cancer center “the cancer tunnel” . . . I still can’t believe that . . . but, I digress).

I met with Jeannie again this week – she was the same peaceful, calm and gentle being that she had been three and a half years ago when I was a complete emotional wreck . . . and when my parents were daily grieving (as was I) my illness and prognosis and all of the fear and anxiety that came along with that.

Jeannie remembered me and remembered my Mom and Dad. She explained how the testing is more extensive now and that my insurance company had already approved the testing – so it would be done that day.

No fight, no battle – it was approved. And now, you get more for the same blood draw (more extensive testing, that is). Yippee! (The blood draw took two nurses and three attempts – my body is done with treatment, done with needles, done cooperating . . . the nurses felt really bad for the number of pokes . . . but, I kind of thought it was funny – the fact that my veins were seemingly running away from them). Veins can be very visible and present and look like they are perfectly read to be tapped and then . . . they can run and hide. That is what happened . . . as if my body was saying get that thing away from me!

So, I had a little victory this week – as I was fully prepared to have to come up with the four grand to have the genetic testing done. It is important now because I may make decisions based upon the results (do I keep my ovaries for example . . . are they ticking time bombs . . . or can they stay) and there is the matter of Jujubee who is now 20 years old – does she need to worry about this breast cancer thing in the sense that it is truly in our genes? So, I need to know now and now I get to know without having to come up with thousands of dollars. Yay 🙂

I am on my way to Santa Monica today . . . seeing my oncologist . . . it is a somewhat routine appointment. Although it is two months early and it is on the anniversary of my first “suspicious” mammogram . . . the day cancer entered my life in the first real way . . . I knew it that day when the results were “suspicious” that all of my tiredness now had an explanation.

So, I am bringing my list of things that I both hope will not lead to scans or MRIs and hope will lead to further testing. Such a weird place to be – hoping and not hoping for the same thing. I have had pain that I shouldn’t have – that always causes worry for someone “post” cancer (as if there is such a thing, but, you know what I mean). So, I worry a bit.  But, I also have been working a lot and doing a lot and not swimming and not stretching and I did have that fall . . . so there are explanations for it all and we will just see what my oncologists thinks. I think she will say we should wait a few weeks and see if the pain continues and if it does continue, then she can order scans.

This is weird post, not at all really about what I want to be posting about. There is so much going on (and not going on) in cancerland that I want to write about. All of the fallout for Livestrong and the continued nonsense of Susan G. Komen (trust me, I will be back on that soon), survivorship, and Rachel. Rachel who died last year. Rachel who was amazing and who is missed by so many. I miss her. She was amazing, insightful, possessed a sharp and incisive and unmatched wit. She made things happen and to this day, her blog and her words continue to change the face of cancer. Here is a beautiful post dedicated to Rachel written by my friend Kathi, the author of the blog: The Accidental Amazon – check it out here: Accidental Amazon

Say some prayers for me and say some prayers for Rachel’s family and friends who are nearing the one year anniversary of her passing. She is so very missed. You can read more about Rachel here at The Cancer Culture Chronicles

 

Tags: , , , ,

I Can’t Give You Anything But Love, Baby . . .

31 Dec

One of the many things I am grateful for in my life is music – in particular – my Dad’s music. I truly believe music promotes good health and healing. I was fortunate to grow up hearing live music every day of my life. My Dad is an amazing pianist, composer and arranger. He can truly play anything. I grew up hearing Rachmaninoff’s third piano concerto – performed by my Dad in our living room. He has composed many original works as well as arranged popular and classical pieces.Christmastree

In what now seems a life time ago, my Dad and I performed together 6 days a week (five nights and Sunday brunch). It was how I paid for graduate school. But, more importantly, it was fun, sheer joy. Nothing replaces playing that often – no amount of practice is the same. So I have, to say the least, lost whatever chops I ever did have. But, it is still a joy to play with my Dad.

So, here’s a little bit of me and my Dad playing on Christmas day. My bass playing isn’t so great on this – it is a fast paced song that I haven’t played in a long time, so it was a bit hard to keep up . . . but fun. (Also, the fall I had down my stairs was just before this little number . . . I didn’t know I had really injured myself yet, looking forward to getting better and having an easier time lugging my bass around) 🙂

My Dad is his usual amazing self . . . have a listen (the link below will take you to youtube – haven’t figured out a fancier way to do it than this) 🙂

By the way, my Dad is a cancer survivor too!

I Can’t Give You Anything But Love Baby

Happy New Year to everyone! I wish you health and all good things in the year to come!

Love and peace,

Lisa

Tags: , , , , , , , , , , ,

No Help For the Poor and No RACE for the cure(TM) . . .

2 Feb
English: Nancy G. Brinker. Chief of Protocol o...

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 Breast Cancer Action’s petition to Susan G. Komen for the Cure demanding they put women’s health before politics.

Please sign the petition. Please stand up, please let SGK know that they are WRONG.

All the best,

Lisa

Tags: , , , , , , , , , , , , , , , , ,

All Quiet On The Western Front . . .

31 Jan

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

Tags: , , , , , , , , , , , , , , , , , , ,

When Pigs Fly: More Thoughts on Komen . . .

24 Jan

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 . . .

Tags: , , , , , , , , , , , , , , , , , , ,

Pinktober comes early . . . ugh

13 Sep

This past weekend while I was reading the paper I decided to take a look through the Sunday paper’s coupons. (By the way, there is almost never anything that isn’t processed, full of chemicals or full of high fructose corn syrup in the coupon items).

Anyway, to my delight (NOT) I found this (see below) the first of the Pinktober ads that we will soon be inundated with, everywhere, during breast cancer awareness month or what used to be known as OCTOBER.

I already feel more hopeful . . .

Wee! Apparently, just like Christmas, retailers make sure it starts earlier and earlier each year. So now Pinktober – the month of breast cancer “awareness” hell – apparently begins a month early. Why should I be surprised. Costco is already selling Christmas items. And why not let them get a leg up on Pinktober? After all, they are curing cancer right? Oh, wait, I meant to say they are “re-branding” . . . isn’t that what Susan G. Komen calls it when they solicit corporations to pay to be pink?

We have all seen it: Pink buckets of Kentucky Fried Chicken, pink Hamburger Helper, pink cosmetics (that often include carcinogenic chemicals), pink, pink, pink. So where does your money go when you “go pink”? Well, here is where it goes if it is going to Susan G. Komen (only 19% of it goes towards breast cancer research, this from a “non-profit” that sues little non-profits for the use of its trademarked slogan: “For the Cure” (TM)). See chart below:

The above pie chart was created by Cancer Culture Chronicles. Her post “Komen By The Numbers: 2010 And Still No Answers” is a major eye opener on Komen, their expenditures and just how it is that Komen has a “four star rating”. And for a breakdown of the math behind where your money goes, see these two posts by Uneasy Pink: here, where she points out that only “two percent of all research dollars go to metastatic cancer research” Uneasy Pink goes on to remind us that metastatic breast cancer is the kind of breast cancer that kills. So what are we racing for anyway? Certainly not a cure. Certainly not if only 2% of the money goes to research for metastatic breast cancer. And check out some more math from Uneasy Pink in this post where she calculates that out of the $59.00 purchase price for a bottle of Komen’s “Promise Me” perfume only a stinking $1.51 of the proceeds go to research. PUHleez!

Perhaps one of the most outrageous (to me) pink for profit items I have seen are the pink alcoholic beverages.

Their Campaign: "Good On So Many Levels" See? We can all feel good when we buy these products even it is a known fact that alcohol consumption increases a woman's risk of breast cancer . . .but, whatever, right?

To be fair, these companies do make contributions to breast cancer research organizations. But, don’t think that it doesn’t increase their sales – there is real profit in going pink. And if you don’t believe the power of pink in selling a product, here is what one customer of Mike’s Hard Lemonade had to say:

“I went to pick up some of the Mike’s Hard Berry, I was told it was temporarily replaced for Pink Lemonade, due to Breast Cancer Awareness . . . I noticed the proceeds were also going to Breast Cancer Awareness Research, so I went out and bought a whole case.” (Emphasis added). For more on Mike’s Pink Hard Lemonade’s “Good On So Many Levels” (blech) campaign, and more customer comments where they claim they are purchasing more because of the good it is doing, click  here:  (By the way, what is “breast cancer awareness research“? I think the buyer may have meant breast cancer research . . . who knows . . . who cares – it sells).

I do not like Pinktober. So what is my problem with breast cancer awareness month? Why does it bother me, you might ask? Isn’t it good to increase awareness? Isn’t it good to raise money for research? Sure, but, when so little actually goes to a cure and when so many products in the pink bandwagon are actually dangerous and increase the risk of breast cancer and other cancers, I feel it is at best disingenuous.

But most of all, I do not look forward to being asked to donate a dollar “for the cure” every time I go into a grocery store checkout (when I know that only pennies of that dollar ever go to research and far less goes to research for metastatic breast cancer – remember – the kind that kills). I do not look forward to the wall of pink crap food at the entrance of and through every aisle every grocery store (I have yet to find a remotely healthy product that has gone pink . . . maybe this year I will find one).

I do not look forward to the false hope that pink sells.

Komen's "Promise Me" Perfume (or what I like to call "Fleur de Fraud"). Cost of this perfume: $59.00. Actual amount of purchase price that goes towards cancer research: $1.51 (Thank you to Uneasy Pink for doing the math).

And I especially I do not look forward to my disease, my suffering, my Aunt’s suffering and her ultimate death from breast cancer, and the suffering of so many other women and men being hijacked for profit.

I do not look forward to my friends and loved ones – who often have felt so helpless in the face of my illness – manipulated into purchasing items that are pink, tricked into believing it is doing me some good or that it will help some woman out there, when in fact these pink purchases often deliver very little to research. And some, deliver none – their promise in exchange for your money? To increase awareness. We need to move past awareness and sink our dollars (not just pennies of our dollars) into research.

And what about the walks and races to raise money for breast cancer? These are often incredibly uplifting events, providing a great deal of support and hope to both cancer patients, survivors and their families and friends. So clearly their IS some value beyond the irritatingly low 19% that goes towards research. Still, in my opinion, not enough. So many show up at these races to do good. I have walked in the past. My friends have walked on my behalf and their doing so has made me feel stronger. Chemobabe wrote a great post about this and dealt with the question of how we can be critical of an organization that makes these experiences (their walks) possible.

And for more reading about Komen try Komenwatch and read here, a blog post by one of my online friends Nancy of Nancy’s Point where she asks SGK for an apology. I agree with you Nancy, I think we all deserve one.

Okay, so you get it by now, Lisa (that’d be me) is not a fan of pink. And now, hopefully, you will have an understanding of why. I am hopeful that SGK (and others who are taking money in the name of breast cancer research) will find the surge of criticism on the web to be constructive and will prove to us all that they can do better than 19%, will do better and will honor their mission (albeit trademarked) to race for a cure (Registered Trademark, Susan G. Komen).

And, just so you know, I have worn my share of pink . . . I wore a pink t-shirt to many chemo and Herceptin rounds. But, I wore that shirt because it had, in very bold, large, black letters the word “FIERCE”.

My Mom bought me this "fierce" t-shirt, it was my "F" word for cancer treatment.

I loved that shirt. It is faded now, having been through the wash many times and worn many times . . . to chemo, to the gym and sometimes to bed. It was as if wearing that word across my chest (and for a good part of the year . . . across no chest) could influence the battle beneath. Fierce. I could make myself fierce even if I did not feel that way, I could make my cells within my body wage the war I needed waged and conquer the cancer.

So, I wore that shirt in spite of it being pink. But, that pink shirt didn’t save me. Research saved me – if I am even saved (I am thankfully, gratefully NED: “no evidence of disease”). Research that lead to the development of Herceptin made it possible for me to still be here. Women who gave their last days of an aggressive cancer to participate in early trials of Herceptin, they saved my life or at the very least, prolonged it.

Awareness did not prevent my cancer. Awareness is not a cure. And, we still, after so many years of pink branding, really do need to race towards research to cure all cancers.

Related articles

Tags: , , , , , , , ,