here we go…

DSC_0006So like many breast cancer survivors, my medical team has decided that I should have a full hysterectomy.

In my case, having dealt with gynecological issues like ovarian cysts and fibroids since I was a teenager, I will admit it comes as a relief.  Especially because neither my cysts or fibroids have improved post breast cancer.  If anything, we’ll say they are acting up and leave it at that.

I met with my surgeon already and am scheduled. I would be lying if I told you I wasn’t nervous, because I am.

But the big picture is the parts don’t work, they have never worked and I am looking forward to peace of mind where these issues are concerned. And being able to reduce the odds further of a secondary cancer is huge in my mind because if I am brutally honest I do have risk there.

Of course, in retrospect I can’t help but wonder if I had tried to go this route years ago instead of being put on hormones, would I have ended up with a hormone driven breast cancer in my 40s?  I will never know, but to women younger than myself the take away lesson is even when you are strong advocate for your own health, you can never ask too many questions.

Onward and upward.

 

 

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stop the presses

DSC_0008A friend who is a writer and breast cancer survivor has been talking this morning about something I had not heard about, but now I have and I am appalled.

Two writers, one from the New York Times and one from The Guardian  (and apparently a married couple) have decided to tag team a woman who writes about her stage 4 breast cancer named Lisa Bonchek Adams.  Lisa writes about her cancer on her blog, twitter , and Facebook.

Lisa Bonchek Adams is living with a horrible stage 4 cancer that threatens to eat her alive from the inside like a twisted game of Ms. Pac Man. So if she wants to dye her hair purple and run around in chartreuse polka dots it is fine with me. But I digress.

Cancer isn’t a four letter word. It just makes you want to spout them occasionally.  It isn’t a beauty pageant, either.  It is raw, it is topsy-turvy and you experience emotions you did not even know you possessed.

I am one of the lucky ones.  And I think dealing with all of this is scary enough some days.  Lisa Bonchek Adams who I never read before today is dealing with so much more. So much more.

And for a husband and wife who write for different media outlets (him, Bill Keller The New York Times and her, Emma G. Keller The Guardian) to tag team this woman because of how she chooses to discuss or even deal with her cancer is just so off the charts wrong to me.

You see, it is not the fact that they have a differing opinion from Lisa Bonchek Adams on how she deals with her cancer, it’s the fact that these two write for the monster media conglomerates, are married, and oopsies are both writing about this? Talk about pillow talk!  What I want to know is if from a journalistic point of view have they crossed an ethical line? In my humble opinion they have.

As I read their editorials, wow was I disappointed in the craft of journailsm. I am so sick of people who judge anyone who has or had breast cancer writing about the journey.  They have absolutely NO idea what it is like to deal with this disease.  NO idea. I have said it before and I will say it again that breast cancer is a very public disease with a very private face. You get it and you know millions have it or have had it, but there are some days you feel so alone like the only one on the planet who has it.

And then there is the emotional component.  Some of us are alone when we get our diagnosis, some of us are parents and step parents to young children, and some of us are just embarking on the rest of our lives and quite young. You get a diagnosis and your head spins the first time.  You go through surgery, treatment, post-treatment and your head spins more on occasion.  Every mammogram and blood test and gynecologist visit the rest of your life will always give you pause, even if you are positive.  Because as breast cancer survivors we always live with the secret fear of “will it come back?” We live with medical histories that are now stamped “cancer”.

I know many women where the cancer has come back. Sometimes as breast cancer, sometimes as other cancers. So for a pair of seasoned journalists to take pot shots like this at a woman dealing with 3 children, a family, and stage 4 breast cancer? Wow. Words almost escape me.  Then they don’t.  Here is the PG-13 version: J-E-R-K-S.

Writing about my breast cancer was a saving grace.  It was a and is a comfort.  Because I have had the ability to do this, write about my journey with breast cancer, it was an extremely productive coping mechanism for me. Being able to get it out and write it down kept me moving forward. And when I have a down day, I still look back to see how far I have come.

I am proud of myself for being able to share this journey on a blog and so are the people who love me.  Through this blog I have met some amazing people. I have also met some through Twitter, because umm yes, I Tweet too.

As a woman who has had breast cancer I can’t read about the disease every day.  I can’t even talk about it every day.  As someone who is more than 2 1/2 years cancer free at this point, the reality is I might not think about it every day, talk about it every day, but it is part of me.  It doesn’t define me, but it is part of me.

Not too long ago, someone who used to be a very important part  of my life and who was a huge support to me when I was going through treatment left a comment  saying my continuing to write about this breast cancer stuff was “milking it.”  I don’t see it that way so I told her so.  I believe she said that to be deliberately hurtful and I am sorry for her that she feels the need to do that because she is someone whom I will always remember fondly to the end of days.

Matthew 7:1-3 King James Version

Judge not, that ye be not judged.

But people are definitely weird when it comes to dishing cancer.  Some people are super secret about it, some people are living it out loud.  I was, and continue to be open about it.  I do that partially out of respect for the kind and caring women I know who were open about the disease when I received my diagnosis.  They wanted me to feel less alone and helped demystify the terror that comes with a diagnosis.  It is the worst kind of scary unknown. Because of these women who shared with me I was able to get through and remain positive.  And I have told you before, some days that positive thing was a very hard goal to keep.

I don’t know this woman Lisa Bonchek Adams who was targeted by this husband and wife pair of seasoned journalists from Adam’s Housecat. I never read a word of anything she has written until this morning.  When I heard about this I dropped everything I was doing around the house and stopped to read her.

To Lisa whom I have never met I say “Brava”. You keep on doing what you are doing. And what is that saying? F them if they can’t take a joke? That too.

And to journalist  Emma G Keller and her hubby Bill Keller with their career defining moments here, I hope neither of you ever becomes ill.  I don’t think you could handle it. And it must be a pretty slow and pathetic news day when journalists like yourself have to target a woman with breast cancer.

Some of my mentors are journalists.  Thank god none of them would do something like this.

Here are the articles:

The Guardian: Forget funeral selfies. What are the ethics of tweeting a terminal illness?

Lisa Adams is dying of breast cancer. She has tweeted over 100,000 times about her journey. Is this educational or too much?

    theguardian.com, Wednesday 8 January 2014 13.40 EST

Lisa Bonchek Adams is dying. She has Stage IV breast cancer and now it’s metastasized to her bones, joints, hips, spine, liver and lungs. She’s in terrible pain. She knows there is no cure, and she wants you to know all about what she is going through. Adams is dying out loud. On her blog and, especially, on Twitter.

She has tweeted over 100,000 times about her health. Lately, she tweets dozens of times an hour. Her Twitter followers are a mixed bag. Some are also battling cancer or work in the medical field, others seem to follow Adams’ life story like a Reality TV show….You can read all about the details of her disease and treatment on her blog right up until about this morning, which is when she posted her latest entry,  only a few hours after the previous one.

The New York Times:  The Opinion Pages|Op-Ed Columnist Heroic Measures

JAN. 12, 2014 Bill Keller

LISA BONCHEK ADAMS has spent the last seven years in a fierce and very public cage fight with death. Since a mammogram detected the first toxic seeds of cancer in her left breast when she was 37, she has blogged and tweeted copiously about her contest with the advancing disease. She has tweeted through morphine haze and radiation burn….When my wife, who had her own brush with cancer and who has written about Lisa Adams’s case for The Guardian, introduced me to the cancer blog, my first thought was of my father-in-law’s calm death. Lisa Adams’s choice is in a sense the opposite. Her aim was to buy as much time as possible to watch her three children grow up. So she is all about heroic measures. She is constantly engaged in battlefield strategy with her medical team. There is always the prospect of another research trial to excite her hopes. She responds defiantly to any suggestion that the end is approaching…..Steven Goodman, an associate dean of the Stanford University School of Medicine, said he cringes at the combat metaphor, because it suggests that those who choose not to spend their final days in battle, using every weapon in the high-tech medical arsenal, lack character or willpower.

*Please Note* The Guardian has removed the article as of this afternoon. I found an online archive of it but I don’t know how long it will stay up. CLICK HERE

ONLINE ARCHIVE of article

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never go to the oncologist on friday the 13th

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(The beautiful Christmas tree is one of the ones at the Ritz Carlton in Philadelphia.)

New Rule: Never go to the oncologist on Friday the 13th of anything ever again.

No, breast cancer has not returned to pollute my body again but an ovarian cyst they have been watching is now annoyingly septated so I might be getting spayed in the future.

I am not borrowing trouble, it is what it is , and I will deal with it accordingly if that’s what my doctors decide. I guess I’m just a little bit annoyed.

But I would rather be a little bit annoyed, maybe have to get a hysterectomy, then have doctors who aren’t watching me and pop a side effect cancer as a result of Tamoxifen.

And then I had a huge reality check. I went into the chemo lounge at my oncologist’s office to get my flu shot. I was seated next to a woman older than myself who is living with stage four metastatic breast cancer.

That zooms you back down to earth very quickly. But for the grace of God go I could not be more true.

She was a lovely woman and we just sat there and talked. She wondered what radiation was like, she’s never had that. Just chemo. She takes oral chemotherapy at this point. You don’t lose your hair as much apparently with oral chemotherapy.

She drives in from Delaware once a month to get this oral chemotherapy and then goes home. She was so sweet and positive and just nice to speak with. It really was a nice thing to have met her. The funny thing is, after my appointment and flu shot I went to the Home Goods store near Penn Medicine at Radnor and I saw the same lady there as well!

I wish I had gotten her name. She is just one of those random people who touches your life and that will leave a lasting impression. I hope she has a Merry Christmas. She deserves it.

This whole experience today reminds me again of the fragility of life and how fleeting life can be.

Today I also saw two women who are friends of mine that I do not see very often. Neither one knows each other, I am the common denominator. I saw them both in the grocery store.

And then there was the humor portion of the day. My sweet man’s former mother-in-law sent a Christmas card here to the house addressed to him and my stepson alone. I apparently, am invisible. Pretty funny stuff. But I guess it must be hard for her.

I have been decorating like crazy and I am in love with my Christmas tree. It really is pretty.

For the first time in my adult life I am hosting Christmas Day for my family. I’m very excited to do this.

Life in time march on people. Grab the spirit of the season and keep those you love close to you.

Pax

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melinda

DSC_0362This is just a portrait.  It is of my friend Melinda who just finished her treatment a couple of weeks ago.  I think she looks fabulous.  A long time ago I spoke about breast cancer art. Not just the work of the SCAR project but other art as well.  Like this portrait of Melinda. Strength and living. The realization of better days ahead, treatment behind.

When we celebrate ourselves and our sisters on this journey, we need to look up and be positive.  We are, after all, alive.

Melinda and I spent the day together yesterday junking, antiquing, and barn picking…and being completely and irreverently and unrepentantly sarcastic. And I did not even think about it until she was leaving and she turned to me and said with a laugh “Do you realize we went through the whole day and did not say ‘cancer’ once?”

It’s true.  And considering we were two hot flashing survivors wandering around Chester County, PA that was pretty damn cool.

Melinda is one of the friends breast cancer has brought into my life. So see? In the midst of all the negatives exist the positives.

Happy Monday all.  On Wednesday November 13, please say a pray in remembrance of my father.  He has been gone 8 years.  I feel like I have lived a few lifetimes since then.

 

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fears and ridiculousness

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My last post was actually an essay by my friend Gwen Moran who is a writer and a damn fine one. In it she delves into some pretty personal feelings on her life after breast cancer. How she feels, and even fears.

You see, there is one thing that breast cancer alumnae don’t want to talk about sometimes: the below the surface hum of worry. It’s that negative little voice that just lurks in the back of your head from time to time. It is because of that voice that I have worked so hard to remain positive throughout this whole experience.

Recently, I received a comment from a woman who was once like a sister to me. She was one of the sisters of my ex-fiancé. She left a comment on a recent post where she basically said I was “milking it” after a couple of years of having had breast cancer. I decided not to post that comment.

The heat of that comment sort of struck me in the face, however. Was I “milking it”? So I thought about it. And the answer is no.

I continue to write on this blog even though I am one of the lucky ones who now has two solid years into a cancer free life.

Part of why I write is because of the women just starting on this journey that I continue to meet. I remember all too well when I was starting out and have not yet had my surgery, and I didn’t know if what I was feeling, or thinking, or even being, was normal.

Part of why I write, also has to do with the women I know post cancer. Women who are survivors or breast cancer alumnae like myself. Ask any of them, and they will tell you that this experience does not stop when you’re sent home after completing your surgery and all your treatment.

With the meds, and even just all of the follow-up appointments that become part of your everyday existence, it just goes to a different level. You move into a maintenance mode for lack of a better description.

But if we are honest with ourselves, much like Gwen wrote in her essay, every once in a while there are these almost ridiculous feeling fears.

Even I experience them. Not all the time, but they exist. Sometimes it’s merely a little wrinkle of concern that quickly dissipates.

Sometimes I have an often irrational fear of breast cancer recurrence, because I look at women I know with similar diagnoses and who have had different treatments. And wonder.

Sometimes I’m just afraid, because I know other women who have had to fight cancer more than once.

So the other part of why I write, is indeed still for me. Because putting my fears down on paper, even the virtual paper of the blog post, helps me cope. That my friends, is a selfishness I allow myself. Somehow I don’t think God and mankind object.

I can also tell you that sometimes I also have the most irrational fears about other people in my life. Breast cancer, to an extent, has turned me into a worrier. And it is really annoying sometimes. My rational mind knows everything is fine, yet sometimes I just worry. It is something I am working on, but sometimes it’s hard. Much harder than I let on.

But I work through it, I don’t want people reading this post to get all depressed or negative about this. It is just part of what you go through. And you have to be honest and acknowledge the good and the bad to stay on top and remain positive overall.

Breast cancer hits the core of women, and it isn’t just the physical changes caused by treatment or mastectomy, or a partial mastectomy or cancer drugs. This disease is a thing that attacks the psyche too. (Of course, the mood swings which can occur while you’re on tamoxifen, don’t help.)

Today is one of those days for me. So I am somewhat more introspective than other days. Of course, it also means my threshold for bullshit will be lower than usual LOL.

Life in time march on. I really appreciate my readers and those close to me who have stuck with me on my journey. There are some people who will not remain with me on this journey. That is the unfortunate attrition of life.

At the end of the day, it’s all good people. I am where I’m supposed to be, and I am loved. And I love in return.

Have a great day everyone!

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after the storm by gwen moran

DSC_0099Gwen Moran is a fellow survivor and personal friend.  She is also an amazing  writer.  Please take the time to read her essay After The Storm reprinted with the author’s permission here:

After the Storm

What lingers most after breast cancer is my persistent worry

by Gwen MoranThursday, October 31, 2013

“You look fantastic.”

Lately, I hear this statement often from well-meaning people, usually before a heartfelt touch of my arm or a tentative hug. It puzzled me at first because I certainly don’t feel like I look fantastic. I’m significantly heavier than I was two years ago and unruly shoulder-length waves have replaced my long, straight hair. Like a stranger trying to decipher a foreign tongue, I finally figured out what they mean: “I’m happy you don’t look like you’re dying.”

That was not the case roughly two years ago, when I was wan, weak and nauseated from chemotherapy treatments for my early-stage invasive breast cancer, barely able to walk from the bone pain. Or when I was bald and shuffling slowly around the house with my arms wrapped gingerly around my T-shirt-clad breasts, trying to keep the left one, burned from radiation until it was blistered, wet and peeling, from any painful swaying.

That’s what you get for trying to kill us, I wanted to tell it. Don’t ever do that again.

Before April Fools’ Day 2011, when I learned that my body had turned on me, I spent hours each week walking, biking, swimming and practicing yoga on the beaches of my beloved Jersey shore. Lightly tanned with visible muscle definition, I looked healthier than I had in years. A lie.

The sun’s kiss is gone and so are the muscles. Steroids, chemotherapy and inactivity, not to mention countless trays of gifted lasagna, added bulk to my frame. But I’m not dying — at least, not any faster than most people.

But the façade others see is not “fantastic.” Worse, it hides something dark and ugly; something few ever talk about in the tumultuous rush of stages, surgical options, hormone receptors and the alphabet soup of cancer-fighting poisons. More immediate decisions need to be made about how to best battle the disease that slowly eats people from the inside out. So, many months after chemotherapy annihilated everything in its path, followed by radiation beams that obliterated even microscopic cancer cells, I feel like parts of my brain and soul were killed, too.

Complaining feels churlish. After all, I made it through the storm and my prognosis is good. Surgery, treatments, and a year of $11,000-per-session gene-targeted therapy, administered through a needle piercing my chest every three weeks, have left me with 90 percent odds of no encore appearance in my breasts, lungs, liver or some other vital organ. This is according to some unknown statistician who calculates such things.

But even those odds, a bookmaker’s dream, aren’t a match for the persistent and lingering worry. Cancer is master of the sucker punch. What if it’s just lurking within that 10 percent margin, waiting for the moment when I’m too weak or tired to fight again? Some days, contemplating that question fills me so completely with fear that relief comes only from deep, jagged sobs expelled from my throat.

My loved ones are quick to chirp, “You’re doing fine! Remember those 90 percent chances!” I’ve stopped reminding them that breast cancer is funny that way. There is no disease-free “magic number” that actually does mark me cured. Each mammogram, stomachache or fever threatens to hold a devastating reprise, at least in my mind.

But now that my hair is back and the pink has returned to my cheeks, I suppose I do look fine — fantastic, even. I feel increasingly like my “old” self and there are times that I even forget about how cancer changed me. I run errands, giggle with my husband and daughter, and have thoughtful conversations with colleagues. I’m back on my bike and pedaled 10 miles the last time out. I make dates walking and gym dates with friends. It feels good to move and helps push the fear away. I feel stronger, both inside and out.

Still, it’s a struggle to rebuild what cancer and its treatment destroyed. While the rogue cells may be dead and gone, it’s difficult to trust my body again. Accepting that this is over — “looks like it’s cured to me,” as my oncologist likes to say — feels like tempting fate. I’m told that, as time passes, I’ll feel more at ease. For now, however, I wait for everything to feel normal again, wondering why the “after” of successful cancer treatment isn’t filled entirely with unfettered joy.

 

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you know you are over “pinktober” when…..

When Susan G. Komen co-opts even your eggs, it means enough of Pinktober. Here’s hoping the chickens that lay the eggs are not pink now too….

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random acts of connection

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I have spoken about the odd phenomenon of how breast cancer survivors seems to sense other survivors. In a room, a store, library, on the street…wherever.

Sometimes we recognize each other as currently going through treatment. Other times it is simply more subtle. It’s weird, but sometimes you just know – I can’t explain it more than that .

I met a new person today at the farmers’ market. We pulled in next to one and other in our cars. This woman got out of her car and I saw the headscarf – she was currently undergoing treatment or had just finished – I did not know.

I don’t know why I decided to speak to her but I did. I do not remember what exactly we first said to each other but it was something along the lines of breast cancer survivors just recognize each other. She mentioned how sometimes people are so awesome with survivors and others not so much. I laughed as I can definitely relate.

Soon we were walking through the market together and just chatting. Ends up she had come to the market from chemo.

It was just one of those oddly serendipitous meetings but I am so glad we spoke. She was so nice and so upbeat and positive. That is something I just appreciate.

We spoke about our cancers, doctors, support experiences, treatment and how people react to breast cancer.

Ends up we live not so far from each other and when we were leaving the market she asked if she could give me a hug.

She went off to her kids and I made my way home to my sweet man and my tall kid. (either I am shrinking or my stepson is growing like a weed!)

Life is funny that way and lately I have been struggling a bit. My transition to Chester County PA physically has been complete for quite a while. But it has not been without its own brand of loss for lack of a better description.

When you move, you don’t realize it initially, but you leave some people behind. It is the whole human nature thing of out of sight and out of mind. And when people you used to see every day do this to you, hell it’s hard- it is not that you had a fight, you just aren’t around and as convenient. I am learning to let some of these people go, but it is still hard. Or it is hard for me.

But one thing breast cancer had taught me is to keep people in my life who can accept me for who I am now as well as who I was, and whom I can count on.

I have also been phasing out some things I used to do like publicity and photography work for a non-profit where I used to live and that was a hard decision . I loved being part of this amazing arts based non-profit for the past few years, but my life isn’t in that community any longer, and I want to do other things. I believe I hurt my friend who runs the non-profit by finally completely cutting the cord, but I had to do it. I have a life in a different area and I have to concentrate on that. And I need to be immersed in my new life.

A lot of my friends from where I used to live need to (I think) see me in my new life. Many of them, although invited out many times have not even been out to see my new home. And that is something that is particularly hard for me. Especially when some have said “well if you have a party we’ll come out.” I know they don’t mean that to be insulting but it doesn’t hit me quite right. Why can’t they come out even if I am NOT having a party?

Making friends as we get older is hard, so in a weird way I am grateful for this new sisterhood I belong to. Because breast cancer made me look at how short life can be and how we need to live and live well, I have learned to be more open in a sense. Not that I was closed off, but just more open to human interaction.

Maybe that odd conversation had here and there won’t mean a brand spanking new friendship, but it can be taken at face value and simply enjoyed. There are a lot of interesting people out there and sometimes to meet them you have to be a tourist in your own life and open to new possibilities.

Today I was just open to new experiences and the result was I met someone really cool…who happened to be a survivor.

Be open to the unexpected. Life is good.

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doing my part

I will update the post once the article is available online. I am doing my part for breast cancer awareness month and it doesn’t involve pink plastic bracelets.

Blogging Through Breast Cancer is on second page of this special section.

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in tears at the goodness of inspirational women

Yes, as I write, I am indeed in tears.  I am fine, don’t worry, I just have been touched by the amazing women being honored by Living Beyond Breast Cancer.

It is women like this who inspire me, and women like this even if I did not know them personally who buoyed me through my surgery and treatment.

I actually do know one of these women a little bit.  And I had no idea.  Her name is Marni Manko.  She is one of those women I just liked immediately when I met her.

How I met her and her husband was funny.  She was Editor of this magazine called Main Line Magazine and it was 2009. She plunked me on their top 100 list for being their favorite blogger that year. Her husband is the son of a politician who still can’t be in the same room with me without his blood MLM2009pressure going up.  I think Marni and her husband  are both terrific.  And I still have the blogging award laminated plaque thing.  For those of you who know me off blog, here is the text of what they said (because it IS amusing to me still):

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Not only does outspoken Save Ardmore blogger Carla  crack us up with her musings on all things Main Line, but watching her throw down over billboards—while a hundred not-so-staid Main Liners cheered their support—was the best time we had since we saw that catfight at the Lilly warehouse sale.

mammo grahamsSo anyway, we all have lives outside and inside of lives and I never knew she was one of those brave BRCA women who took preventative measures against breast cancer, or that she lost her mother to the disease. But she is. And the reverse is true – she never knew about me either.  Both of us have been open about these journeys, but it is just once again the weird truism about breast cancer: you never know who it is going to touch or how.

DSC_0315I hope you enjoy the video.  I think it is totally inspirational and all of those ladies just rock out loud. It is inspirational to me just like the ladies of the Pink Moon Lovelies who are in my friend Nicki’s book with me The Pink Moon Lovelies: Empowering Stories of Survival

Thank you to the ladies being honored by LBBC for making a difference.  Thank you for giving meaning to Breast Cancer Awareness Month and bringing it back past the pink plastic baubles to what is real and true.

Brava

And remember, there but for the grace of God go ANY of us.

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