Pinktober: One Week Down, Three To Go.

6 Oct

It has been a crazy several months (more on that in another post) and I have wanted to write here on many occasions. But, each time, words seemed to fail me. I’ve really wondered what I could possibly add to the conversation about breast cancer or survivorship given that there are so many amazing voices out there doing it every day. And every time I think I am going to write, I don’t even know where to start. I feel like I have said pretty much what I want to say and don’t really want to become a broken record. Nothing is really new, right?

And, I guess that is the problem: nothing is really new.

We still have pink washing, breast cancer awareness month and very little of the money raised in the name of a cure going to actual research and . . . 

still, 30% of ALL women who are diagnosed with breast cancer will become metastatic – as in having an incurable disease, as in they will die from breast cancer.

Cancer sucks. Period.

One week down, three to go. For all of what I love about October (baseball playoffs – especially if my Angels are in it, my empty, beautiful beach, sunsets over Catalina and Halloween) I also dread October. It is pinkified and Komenified for the entire month. Hate that. There is pink everything, everywhere. Turn on the your t.v. and you’ll see it in commercials, the back drop of newscasts, the NFL, you name it, everyone and everything is pink.

Not going to drink this . . .

How is drinking pink alcohol fighting against breast cancer?

There is ridiculous pink branding and pink washing everywhere (Mike’s hard lemonade usually goes pink along with Campbell’s Soup, and so, so many other companies).  Walk into any grocery store, it is as prominent as Halloween, Thanksgiving and Christmas . . . it is like Nancy Brinker started her own damn pink holiday and it lasts a full month long. I realize it is not all Komen, but it seems to be mostly them and if you have read my blog much, well then you know how I feel about Komen. I will never believe that an organization that collected 389 million dollars in the name of a cure (in 2010), but only put 14% of that 389 million towards research, could ever become an organization that I could support or trust. For more on that see: Komen By The Numbers: 2010 And Still No Answers” and how Komen participated in pinkwashing by pedaling their own pink product, here.

Here is just one of many examples of something that is pink-washed – Essie’s “Breast Cancer Awareness” nail polish – by the way, nail polish usually contains toluene, formaldehyde and dibutyl phthalate (aka: dpa) – all known carcinogens – but who wants to be aware of that . . .

And how about these clever names for breast-cancer-awareness, possibly-cancer-causing-nail-polish: “Pink Happy” and “Pinking About You” and my absolute least favorite: “I Pink I Can” . . . really??!!!

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In fairness to Essie – since they do not disclose a complete list of their ingredients online –  I can’t be sure if they use the “toxic three” in their nail polish. But, most nail polish sold in the United States contains all three.  And all three are known carcinogens. But, let’s not go too crazy with all this awareness . . .

The one ingredient Essie does list online is: “dimethicone” which is a “smoothing silicone” substance that can accumulate in the liver and lymph nodes and appears to be linked to the “growth of tumors” (“Cancer Alert: Skin Care Ingredients to Avoid”, by Dr. Edward Group). Sounds awesome, doesn’t it?

That, my friends, is pink washing – selling a product that is known to contain chemicals that cause or contribute to breast cancer in the name of breast cancer awareness.

One of the things I dislike the most is that for all of this “awareness” and supposed racing for the cure, we are not closer to a cure. 40,000 women will die of metastatic breast cancer this year. Not a good statistic at all. I have lost many friends, including my aunt, to breast cancer. I will see more friends die. I might die of it too

We need research. We need to learn what causes breast cancer. We need to educate. We need more RESEARCH. We really don’t need: pink portapotties, pink golf carts or Mike’s Hard “pink” Lemonade or make-me-aware-pink-potentially-cancer-causing-nail-polish with cute (sic) names. We don’t need more awareness.

I dislike the pink onslaught and pink hoopla because it celebrates something that truly is not happening. We aren’t curing breast cancer with pink balloons and pink products. This “awareness” isn’t getting us anywhere.  Sometimes I wonder if we are even treading water. My friends, your friends, are still getting diagnosed, still going through chemo, still dying, period. It is just so damn tiring. Why don’t we just all admit it – this cure thing is a fiction at this point. We are no closer to a cure now than we were when my Aunt died of metastatic  breast cancer in 1994. But, one thing is for sure – the pink profiteers are profiting big time – all in the name of breast cancer awareness.

For me, my personal breast cancer awareness is about the daily physical and emotional ramifications I still deal with nearly six years out. For me, breast cancer awareness is about my friends who have died, who will die and who will be diagnosed. For me breast cancer awareness is about how difficult it still is sometimes to simply live my life. For me breast cancer awareness is the guilt I feel in saying that very thing – that it is “difficult” being a “survivor.” After all, don’t I realize how lucky I am to be alive six years out? Of course I do. But, knowing how amazingly lucky I am does not mean that I don’t also feel like crap some or even a lot of the time. Pain and lymphedema are frequent visitors post cancer treatment.

On the upside, I’ve learned to shrug off pains now without too much thought of it being a recurrence. That is some real progress. But, I continue to see my friends get diagnosed. Many friends have had recurrences. And so for me, not thinking about a recurrence is something I have to actively work at, especially when I am seemingly surrounded by all of this pink crap during October.

So for the rest of this month of breast cancer awareness I am going to try to be less aware of the pink and try to see the orange and black halloween decorations and the fall colors displayed in the grocery stores (let’s face it, living in Southern California, that is about as close as I get to seeing “fall colors”) and try not to see too much of the sea of pink. And, I will try not to retort back with something snarky to the well meaning grocery store clerks when they ask me if I want to “donate to breast cancer” (whatever the %@&# that means). I have always been tempted to respond with something like this: “No thank you, I’ve already donated my breasts to breast cancer. I think that is enough” . . .

Sigh.

So glad to be on this side of things . . .

14 Jun

I checked my site stats for this blog today and saw that the top searches were for the following:

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1) are nights sweats a symptom of breast cancer and/or symptom of estrogen responsive breast cancer, and

2) I have cancer leave me alone,  and

3) 6th chemo could be not so bad

AWE . . . and an extra awe for the last one. Do I ever feel for that person. My sixth chemo was nearly five years ago now. And, it wasn’t so bad, not really. Chemo number 2 and 5 were by far the worst . . . in case you are reading this, whom ever searched that last search, number 6 does not have to be so bad. Mine wasn’t. Although it was a bit anti-climatic because it was still early on in my treatment (had a year of Herceptin to complete and still had many surgeries ahead of me including the one that really changed my life, a bilateral mastectomy as well as radiation. It was quite a year. Been a long haul, still not completely “over it” really. But, it is what it is.

Today was a pretty great day. Went to Venice Beach and walked from Venice Beach all the way to Santa Monica and then to the Third Street Promenade and then all the way back. Something I definitely could not have done a few years ago. And, I walked at a pretty good pace, wasn’t tired a bit. I remember three years ago a friend of mine took me to Santa Monica and I could barely walk up the hill from the Pier to Ocean Blvd. I had to stop a couple of times to rest. It was a very discouraging time.

So for whom ever you are, searching for “6th chemo could be not so bad” . . . I hope your 6th chemo is not so bad and I hope your recovery from all of this is quick. Know that it does get better. I know there are no guarantees but, it is the only way one can think when in the midst of chemo.

I have to say it has taken much, much longer than I expected to get better. But, I am rather impatient. Always have been. Cancer has made me learn a knew level of patience. And it has also lowered my tolerance in some other areas. My doctors all tell me I need to be more patient. But, quite honestly I think it has been my impatience that has helped to get me through.

And, for the person who was searching “are night sweats a sign of estrogen responsive breast cancer” – I so vividly remember those days of worrying about whether I might have cancer and being turned away by my doctor who rather than simply send me for a mammogram, told me I was just experiencing some hormonal changes and blamed it on the fact that I had not yet had children (unfuckingbelievable now that I think about it).

So, in my case, the answer was yes, night sweats were a sign of estrogen responsive breast cancer. It doesn’t mean that yours are . . . but, get to a doctor and be persistent. My doctor ignored my complaints for six months while I whined about how I woke up drenched several times a week . . . it wasn’t until it was time for a mammogram that I figured it out. I am not one to seek out regrets, but if I could give any advice it would be to definitely pursue getting yourself truly checked out. Trust your instincts and your gut. I can’t say anything would have turned out differently if I had been better informed (or if my DOCTOR had been better informed) but, if I could have avoided a mastectomy . . . well, that would have been really nice. But, I am here and having lots and lots of pretty great days these days.

Sigh. Those searches made me feel pretty sad for whom ever was searching . . . and super grateful to be well.

Wishing you well out there.

Love and peace,

Lisa

New Yorker essay worth a read, but grab some tissue . . .

10 Apr

I found this essay last night and thought I would share it. It is written by a son, on the loss of his father. Really beautiful. The essay is called: “Nobody’s Son” by Mark Slouka.

You can find it here:

Nobody’s Son

 

Goodbye my friend

10 Apr

I don’t know what to say. I lost a dear, sweet friend today. We grew up together. In fact I don’t remember a day of my life that I did not know her . . . when I was little we were at each other’s houses every day. As adults we remained friends. Last year my Dad played the piano at her birthday party – it was a great party. I am so glad that we all gathered that day, so many people came.

She survived brain cancer as a child. I remember when she went through treatment when we were just kids. She lived cancer free for decades and then it came back this past January. This time there was no treatment for her, only hospice.

She was an amazing person and a true friend. So kind, so generous, such a huge heart. Biggest heart I have ever known. My love goes out to her parents, to her two brothers, to her niece and nephews and to her husband and to everyone who had the privilege to know her.

Rest in peace sweet Sheila. I love you.

Bittersweet . . .

8 Apr

I’ve been working on organizing things at home – like medical records, what to keep, what to shred. Clothes, what to keep, what to donate. It has been a while since I have been able to tend to things at home. I finally have had some time outside of work – 15 hour days running my business (which I thoroughly enjoy doing) I am not finally able to spend some time working on some things at home. I don’t think I have done that in a few years – instead it has been all about work, work, work and more work :)

I really haven’t had time for much of anything other than work for the past few years now. Restarting a business was a challenge, but extremely rewarding. It has been very satisfying to reboot my business after cancer  – but doing that left little time for anything else but work. And, let’s face it, it isn’t like cancer just up and ends one day and you immediately go back to your life. Nope, no way. Although, I would like to believe that and still see it as a goal of mine :)

When I think back on the past several months even – with a reconstructive surgery not that long ago – it is kind of amazing that I am doing what I am doing (okay, it was only outpatient surgery, but still). I played my first post op gig this past weekend. It didn’t even occur to me until I was just a few hours away from playing my beast of an instrument that maybe it wouldn’t go so well given I only had surgery two months ago. But, it worked out and I had no problems.

I spent my weekend among friends. I enjoyed playing music with a new group and at a new venue. I got in a really great work out today. I took a walk on the beach this evening and watched a beautiful sunset. I walked home and thought to myself how lucky I am to live here, to be alive and to be well. Life is good.

Some years back there were days where walking was so labored and slow. And, there were days when I could not walk at all. And, there were those days that were plagued with thoughts of death and complete despair. It is quite something to be taking the kind of walks I am taking today. It is quite something.

birdslifeguardtowerbeach

So I came home from my walk and posted a few sunset photos to Facebook (see above). I don’t know if it is the home organizing mode I have been in, but for the first time I noticed that I had “58 unread messages” on Facebook. How does one not notice that? Okay, well, I don’t pay much attention to Facebook really, that is how…

I immediately thought: I bet these are from 2009 or 2010 – the year I lost to cancer. Hmmm. I proceeded to look at those messages and I was about knocked out. Some were the: “hey, checking in to see how you are doing” kind of messages and some were offers of help. I started to cry. Reading through one message after the next. Tears over all of the kindness, concern and simply missed messages. All went unanswered. Although certainly some were from people that I connected with by other means – so they were not technically un-responded to, still, just sad. And, then it got worse. As I read through message after message I started to really feel anxious and worried over what I thought could be there waiting for me, what I thought I could have missed.

And there it was a message from a friend who is now gone. And then another message from her . . .

My heart sank as I clicked on it to read her words. Words I was supposed to read years ago.

She was diagnosed around the same time as me, with a similar diagnosis, we met online and became friends. Not long after completing treatment for early stage breast cancer, she had a recurrence. The cancer came back and this time it was stage IV – metastatic – the kind of breast cancer that kills.

I never saw either of her last two Facebook messages until today. Over two years after her death I am reading her words; and somehow I am devastated and grateful all at once. So happy and grateful to see her words again, even though I never had the opportunity to reply. But feeling her death all over again.

Thankfully it wasn’t my last communication with her – it was just the last communication through Facebook. I missed it, and now I have two messages that I can no longer reply to because she is gone.

That damn chemo fog and treatment roller-coaster took away a lot of days and a lot of focus. I missed out on those messages. Weird. Strange. My heart feels empty and full at the same time and very sad. I am grateful for her words and grateful that I saw them today. Such a gift. But, I am reminded of how much I miss her – not that I needed reminding. I think of her all of the time.

One of the hardest things about cancer is also the best thing about cancer (cuz let’s face it, there are so many “best” things . . . NOT).

Best: the people I have met that I would never have met.

Worst: the people I have lost and will lose.

That is the worst, worst thing ever.

I never would have imagined in a million years that such connections could be forged online. But, when another friend passes away, a friend that I have never even met in person, it is a very real and palpable and deeply felt loss. All of us here in this cancer blogosphere/twitter-sphere/etcetera-sphere know this.

It has been a tough few years for so many. Sigh. We need a cure.

Love and peace,

Lisa

 

 

 

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Blogging in a post Keller World

24 Jan

So, I am going to call this era – Post Kellerian. Why not, I can do whatever I want, this is MY blog (sorry Mrs. and Mr. Keller) :)

It is fascinating to me how much fascination has come of this whole Keller thing – not the least of which is/was the Keller’s joint fascination with Lisa Boncheck Adams – a woman for whom I have so much admiration I could not possibly find words to adequately describe. But, one would need only to read through her blog to understand why so many of us share a deep respect and admiration for Lisa.

She has chosen to write about her experiences as a metastatic breast cancer patient. Sometimes her writing causes me to shed some tears because it is so real is a about pain and loss. But, always, her writing – to me – is beautiful. The fact that the Keller’s were bothered by her tweeting and blogging is so strange to me – especially coming from a former New York Times editor. I would think that a journalist would understand (and appreciate) more fully the fact that Lisa chose to write about her experiences and share these experiences online.

We are all entitled to our own opinions. But, something about the Keller’s focus on Lisa seems, well, just really strange and pointless. I had the opportunity to read both Bill Keller’s Op Ed and his wife’s piece (prior to her piece being removed “pending investigation”). My take on all of it is that they were both a bit emotional and reacting without really reading or perhaps even understanding who or what they were writing about. For example, Bill Keller repeatedly referred to Lisa in the context of being a “cancer warrior” – which is language that she (if you actually read her writings would know) does not embrace at all.

So much has been written about  all of this – and by writers who are far more eloquent than I – so I don’t think I have much to add. But, I do feel that something has changed now after the Keller’s wrote about (and in my opinion, attacked) Lisa Boncheck Adams for simply writing about her OWN experiences and choosing to share these experiences online. I personally have benefited greatly and have been enriched by reading Lisa’s blog. No one forces me to follow her or to read her posts. It is my choice to read what I want and when I want. So that – the fact that the Keller’s are offended by something that they don’t have to even face, read, watch, hear about or “follow” – is what I find most ridiculous about all of this.

So, now I am writing again in my own blog and thinking a bit before I decide to write about my most recent experience with breast reconstructive surgery. How much am I now comfortable sharing in this Post Kellerian era? I really am giving that some serious thought now. (Not that Bill or Emma know who I am or care, but it does make me pause just a bit). Bill Keller’s piece was an “op-ed” piece – so it is his opinion. But, if you read his wife’s previous piece in The Guardian – you might see Bill’s op-ed as less op-eddy and more a defense of his wife. Strange uses of publications like the NYT and The Guardian – if you ask me.

I am proud of my blog. Not that it has changed anyone’s life particularly, but it has changed mine. I write mostly for myself. What began simply as a way to keep family and friends around the country informed on my treatment (and thus spare myself and my family the need for time consuming phone calls to say the same thing over and over again – during a time when I needed to reserve as much energy to treatment and healing as possible) turned into something else. It turned into many things actually.

One wonderful and unexpected thing my blog became was a way to connect with others around the world who are either going through, have gone through, or have family members who have had (or are going through) breast cancer. It catapulted me out of my living room and into a shared universe that is #BCSM (breast cancer social media) on twitter and it connected me not only online, but in person, with so many amazing and wonderful people. I was invited to a blogging summit and have been offered speaking opportunities, including a spot on a radio show. None of this was something I looked for or sought. But, I am most grateful for the real, human connections that this blog has enabled and even carved out. I am so grateful for the friendships that I have made. If I had not blogged or tweeted, I would never have made these friendships. Social media before my cancer diagnosis was something I knew very little of and even thought was kind of silly – why would anyone want to “tweet” I thought?

But, I am so glad that I found this space and joined it and I am so grateful for all that I have learned and continue to learn from so many amazing bloggers (and yes, tweeters).

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At the risk of causing distress or shock to either of the Keller’s, this is a photo of my IV line right before my recon surgery last week (took the anesthesiologist four attempts to get a vein and place this IV) and he beat me up a bit in the process (I mean that literally – he slapped my arm and wrist and hand repeatedly to get a vein to show up – lazy bastard – heat compress works without inflicting pain) OOPS!!!! Am I not supposed to talk about this post Keller? Sorry, I know, only pretty photos, pink ribbons and happy talk #fucancer and you know what? #fubillandemma #lookaway

Love and peace,

Lisa

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