Tag Archives: breast cancer

Protected: Trivia that isn’t so trivial . . .

6 Aug

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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 . . .

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

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

 

Some days are simply back breaking . . . LOL

29 Dec
Red Rock Crab, Cancer productus

Feeling a little crabby after falling down the stairs. I wonder if my bones are stronger or weaker than this crustacean’s?

Okay, maybe this isn’t funny, but it is to me.

First of all, I had an amazing Christmas with my family . . . truly memorable. The only sad part was that more of my family couldn’t be there (I missed my beautiful niece and nephew and one of my brothers – their dad). But, fourteen of my family members were able to come over and we had a great time. We had a tappas Christmas (my new thing post cancer). I will post pictures soon.

I made a sangria this year and it was colorful and beautiful. I also made several other dishes as did family members, it was a wonderful feast, but most of all it was just a wonderful day with family. We played music (my Dad played the piano, Christmas songs as well as some great jazz standards and I joined him, to the best of my abilities, on the bass. I have some video of his playing that I will post here soon.

I learned knew things about them, interesting things and it was so wonderful to have an opportunity to catch up with them and to learn about what is going on in their lives. So often it has been about “how are you doing Lisa” and so “are  you good now?” etc. It was nice to not have it be all about me and my trials and tribulations . . . it was a much needed and pleasant escape from cancerland.

And then I slipped while walking down the stairs (I swear, there was no Sangria involved – I was wearing stockings  – no shoes – and walked down my carpeted stairs and my feet slipped right out from underneath me and down I went . . . down several steps to the bottom landing on the tile floor. It was quite a jolt (several jolts actually). But, I thought I was fine and would just be sore.

The next day I was in quite a bit of pain. By the second day it hurt to breathe, I’m figuring now at this point it might be more than some bruising. So I go into to see my doctor and dang it if I don’t have stress fractures. Chemo can weaken your bones. I have had bone density tests and have been told that I have osteopenia, but that it “isn’t bad at all”. I have come to learn that when someone tells a cancer patient that “it isn’t bad at all” that this means that it is bad, it just isn’t bad given the possibilities of bad – it is like a bell curve of sorts (I think). It ranges somewhere between “you have the ‘good’ kind of cancer” (whatever the bleep that means) to “I’m sorry . . . ” (that means you have the really bad kind of cancer – as if there are good kinds). The point of all of this is that I am a success story – so far. I am alive, I am seemingly healthy. I made it through an aggressive cancer, through aggressive treatment and came out of it N.E.D. (no evidence of disease). I have even had my oncologist on occasion refer to me as “cured”. All pretty great things. So in the scheme of things, when you look at the possibilities of what could have happened (never surviving treatment, etc.) having osteopenia really “isn’t bad at all”.

But, now I realize that it means that my bones can break. This can happen to anyone. But, it can happen to me more easily than some and certainly more easily than most people my age. But, I am not one to compare myself to “most” people. It doesn’t help me much. I am in a lot of pain right now and I am limited in what I can do physically for a time. But, that is it. It will get better. And in the scheme of things . . . “isn’t [that] bad at all”

I am disappointed that I will not be able to run the half marathon I signed up for – it is in six weeks – I should be running most days right now to prepare for it. There will be no running for some weeks. Not sure how many, but I am definitely not going to be able to prepare adequately for running a half marathon by February 3rd. So I am planning on walking it again (walked it last year, promised myself I would run it this year . . . oh well . . . maybe next year I will run it).

So I am disappointed. I admit, I was really depressed about this a couple of days ago. But, now I am resigned to it, it will get better, I will get better and hopefully I will get some help with things around my place (lifting is not on my agenda right away). Oh, I really should post the list of things that I am not supposed to do – it is quite hilarious – apparently I am not allowed to go taboggening or snowmobiling (although sledding was not on the list . .. hmm). It is a pretty funny list.

I am going to try walking on the sand (not sure if that is going to hurt more or less than walking on a sidewalk) and I am going to increase my swimming as much as possible (I still have this fantasy where I will actually be able to pull off running at least some portion of the half marathon). But, I am not going to be stupid about it.

Well, I should be sleeping.

I wish everyone a very Happy New Year!

Love and peace,

Lisa

Coming up for air . . .

11 Dec

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

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

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

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

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

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

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

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

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

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

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

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

LOL

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

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

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

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

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

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

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

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

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

Lisa

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

Me and my niece last summer :)

Me and my niece last summer 🙂

Pinktober is almost over . . .

30 Oct

I haven’t written a blog post in a while. I set out to write one today and saw that I had a comment from Jenn (see below) on an old blog post entitled: Komen Please Leave Me Alone

Here is Jen’s comment – I just had to share (you will find my response to Jen below her comment).

Jenn

Submitted on 2012/10/09 at 8:18 PM

Truly sorry that you had an awful experience with NY Komen. That never should have happened – and wouldn’t happen at many other affiliates. I am confused though. Do you want the money to go to patient assistance or to research? Yes Komen ONLY gives 20-25% to research because the other 75% is granted out to the local communities. And Komen gives more to breast cancer research than any other group outside of the government. As for not getting finanicial assistance to help you that depends on the grants in the area. If no one applies for a grant to do this then what is Komen supposed to do? I agree “For the Cure” is misleading but who knew 25 years ago how complex breast cancer was. We all hoped for a quick and easy cure – now we know with science that it will take more. As for the emails from Komen – I suggest you use the unsubscribe button at the bottom of the email and then they won’t bother you anymore and you won’t have to complain about it anymore without knowing what really goes on…

Here is my reply to Jen:
Panera Bread

Panera Bread is supporting Dr. Susan Love’s Army of Women – Good for them! (Photo credit: Wikipedia)

Submitted on 2012/10/30 at 10:21 AM | In reply to Jenn.

Hello Jen,
I think you are the one that doesn’t know what you are talking about. First of all, Komen does NOT give “20-25% to research”. Your numbers are wrong. To answer your question: “Do you want the money to go to patient assistance or to research?” here is my answer: I want Komen to stop being a fraud. I want Komen to stop claiming to be “for a cure” when they are not – no organization that puts more than 80% of raised funds to things OTHER than research can claim that they are “for a cure” for cancer. That just doesn’t add up. I want Komen to stop misleading all of us. And, I want Komen to stop claiming that they help patients with their treatment costs when in fact you can’t ever get anyone to call them back – ever.

You need to read more carefully – Komen’s marketing people are emailing me directly – they use the email contact through this blog to contact me. It is not the email list that bothers me – you can unsubscribe from that once you find out that all Komen wants is your money. The emails from Komen that I am referring to are the ones that they send to me directly through this blog – from their PR and Media people trying to get me to stop telling the truth about Komen. That is despicable. They never answered a single phone call, never returned answered or returned any calls when I called their patient support line over 100 times – but when I complain about that publicly and call Komen out for who they are – I get email after email from their PR and Media people. Just a little disingenuous don’t you think?

You don’t know what you are talking about. I haven’t found a single chapter of Komen that has anyone that will take your call or return your call from “patient assistance” – if you ask me – it simply does not exist.

Anyway, the NFL and others have figured out that Komen is NOT worthy of support. Haven’t you noticed that with many large organizations Komen has been replaced (the NFL supports The American Cancer Society now – they dumped Komen this year). Many other organizations have followed suit. Now when I see a pink ribbon on a cup at Panera Bread I smile because I know that the money is going to something worthwhile – Dr. Susan Love’s Army of Women.

I am thrilled to see that Komen’s stronghold is starting to diminish. I was one of several people that asked for Nancy Brinker to step down. I know she is still there – but she has been rightfully shamed.

I am glad that you agree that “For the Cure” is misleading. Komen is misleading and they only respond when their is huge public outcry. It used to be when I criticized Komen that people would take offense (I am in Orange County where Komen boasts one of its largest chapters) but, now times have changed. Most people I talk to now are on to Komen. No one likes it when they hear that according to Reuters only 14% of the money Komen raised went to research. In fact it is making people pretty angry. It is nice to see that the climate here in Orange County has changed. It is making room for organizations that really do help people get funds. Komen is losing ground and I would like to think that I have been a part of that – that is awareness – making friends and family and blog readers aware of what Komen is really about.

Your last sentence: “unsubscribe . . . and then they won’t bother you anymore and you won’t have to complain about it anymore without knowing what really goes on” is priceless. YOU clearly don’t know what “really” goes on – what really goes on is that Komen only donated 14% of the money they raised in 2011 to research. You can claim all you want that Komen donates more money to research than any other organization but the truth is that they pocket the money and dump it in to salaries and “awareness” and “education” (whatever that is). People are dying. The fact that Komen only used 14% of the funds that good hearted peopled donated “for a cure” to actual research is despicable. They have taken the lion’s share of the money raised for breast cancer research, and instead of putting it towards research, that money goes to six figure salaries, pink-porta-potties, pink golf carts and failing races for the cure.

‘nough said.