Wow, this post was four years ago, pretty much to the day. And, today, I am again, thinking these same thoughts, so it seems appropriate to “reblog” it.
I had a biopsy back in June of a suspicious looking red area (small) on my left breast. My primary care physician did the biopsy and sent it out for testing and the pathology came back benign. I did not realize that “benign” in this case only referred to skin cancer – as in the red spot was not skin cancer.
I saw my oncologist yesterday. She saw the red spot on my left breast and explained that breast cancer can recur in the skin. She further explained that apparently the testing in June should have included testing for breast cancer markers. So now they are running a stain (on the same sample from June) to see if it tests positive for breast cancer. Ugh, sigh. My head was spinning yesterday (and, I confess, much of today).
I appreciate any prayers, good juju, positive vibes, etc., you can send my way.
Hoping for good news.
Much love and peace,
Lisa
“I dream my painting and then I paint my dream” Vincent Van Gogh
21 Aug
Nothing Gold Can Stay . . .
14 AugI lost a friend today.
I woke up this morning and read the following message:
“Did you hear the news about ______? She died last night. They think it was a combination of alcohol and pills . . . ”
I am so sad that she was so sad and in so much pain. I know she had been struggling – both with physical and emotional pain.
It is very hard to wrap my brain around someone choosing to die. And much harder still to wrestle with the fact that my friend chose to die.
I wish my friend peace. I am without words and my heart aches.
Nothing Gold Can Stay, by Robert Frost Nature’s first green is gold, Her Hardest hue to hold Her early leaf’s a flower; But only so an hour. Then leaf subsides to leaf, So Eden sank to grief, So dawn goes down to day, Nothing gold can stay.
Monday Blues
6 AugTwo of my friends are dealing with a cancer diagnosis this week. Both had biopsies last week and both went through the wait only to hear bad news. Those days are so hard, the waiting and the finding out and the seeming finality of it all. There is no going back to before you found out. There is no going back to the minutes before – to that space and time – where you still believed and hoped and prayed that what looms as your worst nightmare does not come true. I remember that vividly. I remember desperately not wanting to have to give my parents the news that their daughter had cancer.
This past week, while my friends waited for results, I prayed and hoped that their news would be good. I told them what many told me when I was waiting for results: “that often it is nothing”
I wanted to believe that in 2009 – despite the fact that my mammogram report stated: “biopsy to confirm malignancy”
I still hung onto hope, after reading those words, that I would somehow escape it. And this past week, I hoped and prayed for my friends that it would be nothing. Sadly, this was not to be. Now there is more waiting for them and more praying for good news within the bad. Good news now would be to find out that their cancers are not advanced, that it is treatable and that the treatment required will not be harrowing.
So this week is tough. Tough to know that people I care about are suffering and tough to know that there is nothing I can do to really relieve any of it for them.
Please pray for my friends and for their families.
Cancer sucks.
Love and peace,
Lisa
Sounds of the Ocean and Brain Waves . . .
3 JulSounds of the ocean . . .
and sleep before 2:00 am for the first time in a week . . . are wonderful things.
It has been quite a week, quite a day and over all, it has been good.
Today was a long, but productive and satisfying day. And, ending today with my bedroom window open and sounds of the waves crashing . . . and knowing that I will be asleep soon . . . well it is good.
It has been a tough go for a while. I have another long day ahead of me tomorrow, but then a long weekend off!
So, aside from my normal work day (which I won’t bore anyone with) I also had testing at UCLA as part of the follow up to a clinical trial on “cognitive rehabilitation” post chemo. I had the good fortune to participate in this clinical trial and to be part of the “control group” – which meant that I got to participate in a class for women who have been through breast cancer and have had chemo (and who potentially suffer from “chemo brain”). It was an amazing class. We met weekly at UCLA and received invaluable tools and techniques not only to improve memory, but really to improve the overall quality of life post cancer. I got much more than I thought I would out of this class. I learned how the brain can be affected by cancer and cancer treatments. I learned that my experiences were not unique. I learned ways to adjust and to make up for some of the losses I have experienced. And, today, I went through testing (puzzles, memory testing, math problems) and saw actual proof that my brain has improved (from prior to the cognitive rehabilitation class).
It was such an amazing class and it has made such a difference in my every day life (work, personal life, etc.).
I am so very grateful. I was in the last group (part of a four year plus study). The results of this study will likely make the class that I had the incredible good fortune to participate in, a standard part of care for cancer patients. It is wonderful work that they are doing and will change the lives of many for the better. And, a healthier brain post chemo – I think will lead to a healthier body. Reducing everyday frustrations by regaining lost skills – that alone has to make a positive difference in a person’s health.
So, I am very, very grateful to the wonderful researches at UCLA for conducting this program and for Dr. Susan Love’s Army of Women for supporting this research program.
Here is a picture of my “Queeg” cap (40 electrodes attached)! LOL . . . Look, it is “Franken-Lisa”
So grateful to have been able to be a part of this study. There will be more follow up in two months (they do this to see if the improvement/benefit from the class lasts) . . .
Wishing everyone a safe, happy and healthy Fourth of July!
Love and peace,
Lisa
Thanks, but no thanks, cancer.
25 JunA great (and highly relate-able) post from Phillipa at Feisty Blue Gecko 🙂
There are so many different ways of handling a cancer diagnosis. There are more ways than there are people who have or have had cancer, in my view. As each one of is individual, each approach is unique. It might be similar to many others, but it is essentially unique. Why more ways than people? Because this varies even within ourselves. Much depends on where we are in the cancer experience. In the three years eight months and 22 days since I learned I had cancer, I have veered between the “WTF – Cancer??” to “warrior” to “cancer rebel” to “advocate and activist” to “inspiration” and many more. Each is valid to the individual and to where they are in the experience. What is not valid is suggesting that one approach is right and another wrong – each must be respected even if it very different to our own approach.
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Brinker Stinker: A Reminder of What Susan G. Komen is Not About . . .
5 May
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 . . .
Happy Birthday Mom!
30 AprHappy Birthday to my wonderful Mom!
Today is my Mom’s 78th birthday. This picture was taken a couple of weeks ago. Isn’t she beautiful?
Not a day goes by that I am not grateful for her constant presence in my life. I truly would not be here if it were not for her – that statement is true in so many ways.
Happy Birthday Mom. I love you.
Easter has become my Thanksgiving . . .
31 MarLast 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 . . .
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
Rachel . . .
6 FebRecently, my friend Kathi of The Accidental Amazon, commented on my blog. Since Kathi so often writes about the very things I am feeling, I thought I would share what she had to say (it is posted as a comment, but I wanted to re-iterate it here).
“. . . I hope this year will be kinder to us all. I hope for less pinkwashing and less sexualizing and less trivializing of breast cancer. I hope for more answers and better options and less collateral damage. I know that none of us will forget Rachel . . .” (by Kathi, author of The Accidental Amazon)
Wow. So well put.
Like I said, so often Kathi writes something that so exactly conveys how I feel . . . her blog is here at: Accidental Amazon
I hope that this year is kinder to all of us too.
Too many have gone and too many are suffering in ways that many outside of “cancerland” are unable to comprehend. I watched my aunt suffer in ways that are unimaginable and yet it happened. And the sad truth is that almost 20 years later (she died in 1994) nothing has really changed all that much. But I hope and pray that things will change. I pray for that for all of us. And I pray for that for Rachel’s memory – that her words will continue to make a difference and to continue to shed light on what needs to change and continue to encourage others to speak out.
I hope for less pink washing and less sexualizing and trivializing of breast cancer too.
The true face of this disease is so different from what is portrayed. That is one of the things that I find most disgusting about Susan G. Komen – that they parade women around who are survivors and paint them out to be completely over cancer – as if it was some little blip in their life – and they (SGK) then take credit for the paraded success stories – all a result of “early detection” . . . that is what they tout as a cure . . . GRRRRRRRRR. This is what I have seen year after year at their “races for the cure” (yes, I go to these things – I feel like I can’t fight the enemy unless I know them – rest assured, they get none of my money). They never bring out the women who can’t walk out on the stage or who are dying. After all, that just doesn’t make people feel all warm and fuzzy inside.
Not so Pretty in Pink
Instead they wrap it all up in pink bows and pink balloons and take credit for the survival of these seemingly unaffected survivors (it is horrifying to see really – the lies – when we all know that you don’t just walk away from it, there is
fallout, post traumatic distress, financial chaos, brain fog, physical pain, physical limitations and fatigue . . . to name just a few of the things that cancer leaves in its wake).
But there is no mention of any of this at the “races for the cure”. Instead it is pink ribbons, balloons, pink porta-potties (as Rachel so eloquently and mathematically pointed out, most of the money raked in by Komen in the name of a cure, went to everything but research). I mean really, pink porta-potties? Talk about money down the toilet. And PINK-WASHING – yup, they actually do it right there on site at the “race for the cure” – products given away and sold that are in containers that are linked to an increase risk in cancer (products that are in plastic with chemicals that leach into whatever you are drinking out of it – they call these chemicals hormone disrupters and there are many studies that link these “hormone disrupters” to not only an increase in breast cancer, but also prostate cancer.
That is how it is here in Orange County, California, where I live. Early detection is sold as a cure for breast cancer and survivors are paraded around a stage (one after the next speaks about their cancer blip as if it was nothing and then SGK gets more money in the door by associating themselves with survival and pretty pink stories.
That, to me, also trivializes breast cancer, trivializes what Rachel went through, what her family went through and continues to go through. And it trivializes the real plight of survivors and truly down plays the need for treatment post treatment. I need physical therapy but can not afford it. I have insurance, but the co-pays are impossible to manage.
I recently went back to work in a very full time (okay, more than full time) way. And it is very hard. My body is not keeping up with it. But, I am grateful to have the opportunity to be here and to claw my way through it. But, it is painful and hard and most people in my life think that I am fine (LOL).
It isn’t enough
The pink bows and ribbons and wasted dollar – trivialize all of it. We are all just supposed be grateful that we survived and not expect anything better . . . it is not good enough, not at all. And we are supposed to sit back and watch younger and younger women get diagnosed.
I stopped writing after Rachel died. It was just too painful and I felt too lost. It wasn’t a conscious decision to stop, I just stopped. I still have not watched all of her memorial footage (I barely got through any of it). Is that wrong? I just haven’t been able to do it. You see, I had planned a trip – it was this idea I had of traveling across country to meet all of these amazing women in this wonderful blogosphere – and at the end of that trip I intended to reach Rachel. That will never happen. She is gone. I had a map in my head – I saw pins placed where everyone resided – from the West Coast where I live, to the East Coast. Rachel was at the farthest point on my map of the United States. (Which at the time seemed fitting somehow, to end the trip in with a visit with Rachel). But, it never happened and it will not ever happen.
I know that none of us will ever forget Rachel. She left a void, a palpable empty hole. But, she also left us everything she wrote – such powerful words. Words that continue to churn around the world and draw attention to what is wrong, to what needs to change. Words that encourage others to write and to continue to pave the way for change.
Today much, I imagine, will be written about Rachel. I know that we will all be thinking of her and of her family. Like I said, for the most part, I stopped writing because of Rachel’s passing. I know that isn’t/wasn’t the right response and it certainly isn’t the right thing to do . . . especially when I recall that one of the last things Rachel said to me was to keep writing about SGK. I have felt guilty about not writing and I have felt paralyzed, when it came to writing, by her death. It is too hard to even explain.
I miss Rachel. I know I am just among many others who miss her, especially today.
Love and peace and prayers to Rachel’s family.
Here are two beautiful posts about Rachel:
Nancy’s Point: Remembering Rachel
Accidental Amazon: Elegy to Rachel
And here is one of her many important posts: Komen By The Numbers: 2010 And Still No Answers
Lisa
cancerfree2b 