MONA LISA, THE TOUCH AND THE SMILE

It was a little over a year ago. I was at a small seminar. The room was arranged with the tables in a rectangular layout. At the far end, a screen for any power point slides. Around the other three sides, a group of about 20 women.

I think, if memory serves, there was one young man in the room. Poor guy. I'm sure there was a point that he wanted to crawl under a rock.

Put a bunch of women around a table and someone is bound to make a wise crack. What happens after the wise crack is made generally depends upon the woman around the table. On this day, we were a group of breast cancer patients, some of us post treatment, some in active treatment and some living with metastatic disease.

Between the chemobrains and the list of topics, it can be funny to watch and at times, a bit difficult to keep up. The conversation turned to quality of life and quality of life quickly turned to a discussion about quality of intimacy and the downright painful side effects many of us experience from the estrogen-suppressing medications we take. The way some of those medications wreak havoc on our skin, starting with the most sensitive skin like the thin skin under our eyes and well, to be quite frank, the pain some of us live with just by walking.

OK, so I'm really not trying to gross anyone out but it's a fact of life. It's part of the normal aging process but those cancer drugs tend to take the aging process and move it at warp speed. Chemotherapy induced menopause, tamoxifen, aromitase inhibitors like letrozole. Havoc. On Steroids. In some cases, literally as a part of the treatment protocol.

As the discussion bounced around the table, I was sitting directly opposite someone who, should she choose, can identify herself in the comments, was a bit quiet. She glanced at me and in a small voice, she said, "Mona Lisa Touch." I looked at the woman beside me and now we were both glancing across the table. "WHAT?" With a slight smile on her face, reminiscent of the upturned lips on the famous painting, again she said, "Mona Lisa Touch, just google it." As I was scribbling furiously before I forgot the order of the words because yes, it can happen that fast, the person seated to my left already had her phone out, googled it and handed the phone to me.

I have had Mona Lisa on my mind for a year. But, I had those nipple tattoos on my mind too and I took the path already paved for me. I knew what to expect, I knew where to go so the nipples got done and Mona Lisa remained "in the parking lot." (Another day, there will be an "in the parking lot" post for those, who like me, have no clue what that whole parking lot thing means.)  Mona Lisa Touch was on my "must investigate" list, aka my parking lot.

I've been so damn distracted lately, seems like I'm running around like a chicken without a head. Sometimes, email messages can sit for days. Sometimes, I read them on my phone and then, they could be in the email abyss. Thankfully, I didn't miss this email. It was from someone who is helping promote Mona Lisa Touch. She sent me a lovely and detailed email, included some journal publications and asked if I'd be interested in writing about the procedure in the space. In order to do that, I would be connected with a local doctor for complimentary treatment.

I was like Meg Ryan as I read the email. "Yes, Yes, YES!" my brain screamed and as soon as I emerged from my Harry Met Sally moment, I composed a dignified and proper response. Last month, I had my first of three treatments. Just 48 hours ago, and now round two is in the books.

Coordinating this was no easy task. I was running in and out of town for a few different meetings and then, the doctor was on vacation. All I will say about the wait, it was well worth it. It's no secret how I feel about being a partner in my care and I did look up the doctor who would be administering the treatment. She passed my first round of testing. She was great on paper. When I met her, well, let's just say in the course of this, she identified something that will require minimal surgical repair and although she quickly said she could arrange for a colleague on Long Island to take care of me, by that time, I just shook my head and stated, "Nope, you're my doc."

My first appointment with Dr. Nicole Fleischmann was on October 18. I immediately wanted to acknowledge my experience with both Dr. Fleischmann and Mona Lisa Touch on twitter and they certainly made it easy enough when I found this tweet.

What was it like? How do I feel? I can answer the first question, but not the second just yet. We spoke for a bit before she brought me into the treatment room. She duh, took a complete history, especially as it pertained to surgeries. The hysterectomy thing is kind of a big deal. No cervix and she's going to perform a vaginal procedure? Yes, I'd say that bit of info was important.

We then talked a little about the procedure. She explained that she gets the best results if she performs an internal treatment and an external treatment. She let me know I might feel like I have a vaginal sunburn which begs a few questions. Even if I were inclined to sunbathe in the nude, I'd have to strike some pose for that type of sunburn. Would it be appropriate to use sunblock? I'm guessing not but even if that were ok, wouldn't I need something like an SPF2000.

The procedure itself, despite the fact that she did what might be considered twice as much lasering, was finished in less than ten minutes. I felt nothing. In fact, the only thing I recall is being handed goggles to protect my eyes and then a whole mess of chatting about our personal lives. Funniest moment. The portrait of the Mona Lisa in her office. Her staff gave it to her, but not before they had her face superimposed under Mona Lisa's smile. 

My ride home was about an hour. Traffic not so bad and discomfort from the treatment non-existent, despite the fact I was not really dressed in appropriate attire. Sweat pants would have been a better choice than the jeans I was wearing.

I did not expect to notice any real difference until after the second treatment. Since that was done this past Monday, there will be an update. At the moment, I'm on the same 7-day ban on intimate relations as I was after the first treatment. Dr. Fleischmann wanted to make sure I derive the full benefit of Mona Lisa Touch so the treatment was more extensive or my body is just that much more of a mess than most. Normal ban? Two days.

Frankly, this messy lubricant thing is getting on my last nerve. I'll keep you in the loop as I fully expect to have a ceremonial garbage toss if the need for said lubricants is eliminated. Every time I see a commercial for the competitor of the little blue pill mentioning something about ruining the moment, I don't even try to hide my loud sigh and dramatic eye roll. Ruin the moment? Nothing that screams romance quite like, "Pass the K-Y." (insert sarcasm emoji) They can try to make those commercials seem like the K-Y is all fun and games, but spontaneity is where the fun is. 

Joking aside, completely aside, feeling pain when what my head knows I should be feeling pure pleasure, UGH. Sandpaper skin exponential UGH. Intimate relations may be considered optional to some. I would not be in that group but, walking is difficult to eliminate from the daily activities. Using any sort of estrogen cream seems counter-productive. I'm taking pills to suppress every gland in my entire body from producing estrogen and now, I'll slather it on myself? Although estrogen would likely help, its use in many breast cancer patients is somewhat controversial within the medical community and really, when I think about it, how does it make ANY sense to even consider using estrogen, especially when there is a better way.

Mona Lisa Touch is poised to resolve that problem. Read more on their website and come back here in a couple of weeks for a post treatment two update! 

My second date with the doc and the laser was on November 28th. My next post about Mona Lisa Touch may get Twenty Shades of Grey-ish.

One more treatment scheduled in January... after which, I'm guessing we may leapfrog well beyond Fifty Shades. Just thinking out loud here...

Like it?  Share it!

FIFTY YEARS AGO.

Another Rerun for Lung Cancer Awareness Month. My first brush with death, fitting that I close out LCAM with this post about my beloved grandfather.

This is really an expression of love: of family, of friends and of all of those whose lives have somehow intersected with mine. My life is enriched by every relationship, and I am me, this person, because of all of those who are now a part of me.

Some relationships are or have been purely filled with joy, some tainted with deep sorrow and others have left me me with wistful feelings of what might have been.... indeed, what should have been.  My grandfather fits into all three categories and he was only in my life for a short time.  His legacy and the memories have lived on in the stories and the photographs and especially those old movies.  Despite having no sound, the images tell such wonderful and rich stories.

It is fitting that I close out my month of lung cancer awareness with this post. I was a young child, this was the first time I experienced the death of someone who meant so much to me, I never heard the word cancer before this and so, let's see what we can do to make meaningful difference over the next year so LCAM17 has a completely different appearance and feel. I'm all in.

From 2013:

I think it had to have been the first time I heard the word cancer.  Over the course of the years that followed, I remember hearing things like, "Six months.... the operation was over quickly, as soon as the doctor saw what was going on, they closed him up and gave him six months."

My nana was a widow for FORTY years.  My grandfather was larger than life.  He was 55 years old when he died.  I was a child. A heartbroken child.  Not only was it the first time I heard the word cancer, it was the first time I was touched by death.  It was November 28, 1966.  Lung cancer.  That, if I'm counting correctly, means that today, in 2016, is the 50th anniversary of his death.

It would be just two months later that my mom's dad would die.  Also cancer.  His was liver cancer if I'm not mistaken.  Decades of no progress where it really counts despite the way the statistics are presented..... Because lung cancer is so stigmatized, that has become a key focus in my life but really, we need more big success stories, across many cancer types and subtypes.

My focus is on one grandfather because the anniversary of his death happens to be the same day as Thanksgiving (it was when this originally posted a few years ago).  Coinciding with a holiday, it has given me reason to pause and reflect.  Like my dad, he is missed at every occasion, every Sunday gathering and pretty much every day.  Today, as I make the last preparations to celebrate a quiet holiday with five of us at the table, I pause to remember all of those who are no longer here.  I will gaze at the flickering candle flames and send love and light to all who have come to mean so much to me.

Thank you for being a part of my life, for allowing me into yours and for sharing the path with me.

We never know where we will be from one holiday to the next and I can tell you that much has happened since last year. Some things I've shared openly, the good, the great and the heartbreaks, too.  Others I've kept close to my heart.  They are either too painful to share, or they are not appropriate to share because the stories are not mine to tell.

I'm grateful for the gifts of love and support I've received by simply typing words on a screen and sending them out into the unknown.  You, whether in the blog world or in the twitterverse, have held me up at times you may not have known I needed to be held up.  I've shed many tears over the love you've so generously showered upon me and I've laughed aloud on several occasions at the silliness we have shared.

Yes, I am grateful..... in ways I can't even begin to describe.

Signing off until next week.......

With all my love,

Anne_Marie

I swiped this photograph from my mom many years ago.  It was taken in the yard of my childhood home.  My dad was younger than my kids and my grandfather was younger than me.  I know they would both be filled with pride at the way their family has grown.

Like it?  Share it!

DANNY, YES, I MISS YOU STILL

My memories as I posted them shortly after Danny's death in 2014.

Every life has a story and this life is no different.

Danny is someone who was very dear to me.  His ashes, as I understand it, have been spread over the graves of his mom and dad.  That was his wish.  He planned each detail.

Beyond being someone who was so very dear to me, going back many decades, Danny was a man whose smile could like a room.  His heart was huge.

Danny and I were inseparable after high school for a bunch of years.  We lost touch for many years at a time with an occasional phone call here and there.

Earlier this year, I found out he was diagnosed with lung cancer.  I called him to say hi, to let him know I was thinking about him.  He gave me the details.  He had shingles.  Bad.  For whatever reason, they did a CT and saw this thing on his lung.

When I spoke to him in March, he had completed chemo.  I recall him saying that it really knocked him on his ass.  He told me the oncologist pushed a very strong regimen because he was in great shape and in that oxymoronic fashion, he was very healthy.  Except for that cancer shit.

I spoke to him again in May.  This time, he called me just to say hi.  It was May 18th.  The date held sentimental value to us and he mentioned during that call how he never forgot that and how each year, he would remember our friendship and how each year, he would think about calling, but he never did.  This year, less than four months ago, he decided he was going to call.  We strolled down memory lane together.  He sounded great, he was feeling great.  Cancer was a blip, he fully rebounded from the chemo and life was good.

Except, apparently, it wasn't.  I have no reason to think he knew something was wrong when we spoke.  I can only surmise the cancer returned with a vengeance.  A couple of weeks ago, I got word that he wasn't well.  In fact, I learned, "it doesn't look good."  I had every intention of calling him but each day, every day brought new challenges in my own life.  I never made the call and now, it's too late.

Danny died on September 3rd in a hospice facility in Florida, near the town where he had been living for the past few years. His former wife, an MS patient, was at his side the entire day.  Five minutes after she left, he took his last breath.

This is the essence of who he was.  Danny was married for a short time.  Married life was not for him and although they divorced, they remained best friends.  When she was diagnosed with multiple sclerosis, well after their divorce, Danny made it his business to care for her.  When her condition deteriorated to the point where she would need care beyond what he could do in his home, when she was no longer able to live alone, he arranged for her to be moved to a nursing home.  When he relocated to Florida, he arranged for her to be moved from NY.

It wasn't near his home, but rather than settle on something less than, he had her put on a waiting list at a facility that was close to his home.   He would not accept anything short of the best possible care and he spent every weekend visiting with her, driving quite a distance but never missing even one weekend.  Until the shingles thing.... and then the cancer thing....

My heart is broken.  It has taken me more than three months to put my feelings and thoughts on paper.  I started writing this shortly after his death.  The hurt, the emotions, the anger over what I feel is senseless kept me from putting pen to paper, to fully capture the man, the friend and the gentle soul with the big heart.  I can't pick up the phone to check on him.  I won't hear his voice again.

Lung Cancer.  It kills and it kills and it kills some more.  My friends who work so diligently to promote awareness of this disease, the stigma attached to it and the lack of funding for research to improve outcomes, do so because this should not be happening. Even with earlier diagnoses, the outcomes are not nearly where they should be.  My beloved grandfather was 55 when he died.  I was ten years old.

Danny was in his 50's too.  He had a LOT of life left.

Instead, he was stolen from those who loved him.

Today, I cry.  And today, I remain aligned with my friends who advocate on behalf of that patient population.

And today, in 2017, just before Thanksgiving, I am grateful for my memories and for the friendship I will forever cherish.

 Like it?  Share it!

HEATHER VON ST JAMES: TEN YEARS POST DIAGNOSIS OF MESOTHELIOMA

RERUN for LCAM16

Eleven months ago, I received an email.  It was from a husband, a daddy and suddenly a caregiver to his wife.  Cameron Von St James reached out to me and I hoped to share his story, Heather's story on this blog.

We first connected right before Sandy left me (and the entire NY area) with a giant mess on my hands.  Then, we reconnected as the holidays approached and I was preparing to take my sister, and then, my mom, for biopsies.  When we next connected, I was sharing the details of my mom's diagnosis of metastatic disease.  There was always another "thing."

Maybe that's the way it was supposed to happen.  As it turns out, Cameron contacted me a few weeks ago.  TODAY is Mesothelioma Awareness Day.  I was vehement about awareness and how that ship has sailed.

And yet...... Here is a perfect example of a need to raise awareness.  Get people talking.  And educate.  Awareness without education isn't effective.  Now you are aware.  Learn about Heather and how she empowered herself.  Share with the lung cancer community at large and today, especially, on behalf of those diagnosed with mesothelioma.

Today's goal?  Helping to share the voices of those Dying to Be Heard.  Please do click and see why that goal is set at raising 7200 voices in solidarity.

We need to stand shoulder to shoulder in support of every form of cancer education.  Because yes, all cancer is NOT pink. Can you help share this message?  Share from Heather's link, or share this blog across as many channels as you see fit.

And please, do listen to Heather, beautiful Heather, in her own words:





Like it?  Share it!

THIS WAS TOO YOUNG

Alexandria: Stolen August 2012. Posted originally in 2013

I don't keep up on awareness months.  Personally, I'd prefer a more unified approach to the many diseases that are under the cancer umbrella.  After seeing all of the attention in October and the fact that any mention of the word ribbon or the sight of anything pink means just one thing: Breast Cancer I can't help but compare.

It's lung cancer awareness month.  November.  I read a few other things that we are supposed to be aware of this month but for starters, shouldn't we be aware year round.  People don't only get cancer or die of their cancer in the assigned month.  It's a daily event.

However, there is a need to bridge the gap on behalf of the lung cancer patients.  Yes, those with other cancers are stigmatized and may be embarrassed to discuss the nature of their disease.  But, there is no other cancer for which blame is so easily assessed and judgment is immediately passed.

Irrespective of how or why it anyone gets a disease, this is disgraceful.  It's not about the cigarettes, it's about our lungs. No one shared that with a more powerful voice than Lauren Terrazzano.  If you don't know who Lauren is, you should click that link and learn more about her.

I read this story with great sadness. Alexandria Misnik-Gasior was diagnosed with Stage IV lung cancer.  This is normally the situation.  Late Diagnosis.  When hers was diagnosed, according to the story, it was throughout her entire body.

Her one request?  No mention of the words "Lung Cancer" should be included in her obituary.  The stigma.  She didn't want the stigma to be attached to her life, her legacy and follow her into her grave at the tender age of 24.

(If the link doesn't work, try googling her name and the name of the journalist who wrote the story for the Philly Burbs, J.D. Millane.)

Like it?  Share it!

HAPPY BIRTHDAY TO MY GRANDMOTHER

RERUN from a prior post.

Today is my nana's birthday.  More accurately, it would have been her birthday.  She died in March of 2006.  It was just weeks before I stepped into biopsy hell.  I am glad she wasn't here for that.

She had a very colorful way of saying things, I can guarantee she would have been mighty angry if she were still alive.  If I sit quietly, I can hear her voice and I can pretty much hear every curse known to mankind.  She would have used them all, and she would have made up a few new ones in the process.  Mom knows I'm right.  My two aunts know, too.  So, for that matter, does anyone who ever met my nana...

My grandmother died a few months after her 94th birthday.  She lived a long and full life.  And she smoked.  I remember her smoking when she was in the hospital being treated for pneumonia.  Obviously, this was many years ago when hospitals had smoking lounges but she was sneaking the cigarettes from her hospital bed.

I'm not advocating any of this, I'm just sharing a bit about her life.  And, including a little reminder: There was a point when smoking was not known to be harmful.  Or, it was known but it wasn't known by the general public.  Until the surgeon general came forward.

She was a rebel.  She was fierce.  And she was protective of all of us.

At 94 years old, natural causes is the only proper thing to say but the truth is:

My nana had lung cancer.

It was found on an imaging test when she was 91 years old.  She was not treated for the cancer and in fact, she never KNEW she had cancer.  My dad was adamant and fought with any and every doctor.

"She's sharp as a tack and she has a right to know.  We don't withhold information.  We are duty bound to tell the patient."  The doctors would be right but my dad was protective of my grandmother and he was having none of it.  Why should she live in fear of that word?  Of that diagnosis?

She did not suffer in the end, and pretty much, she smoked until the day she got into her bed where she died a couple of days later.

My heart was shattered and I'll never forget the words of the priest at her funeral.  "Ninety four years is still not enough."  And yes, he was right.   It wasn't enough time, there were still more memories to be made.  I miss her.

November 10, 2001:  At her 90th Birthday celebration, dancing with my dad.

Like it?  Share it!

NO BETTER DAY THAN TODAY TO TALK ABOUT PTSD

Today I realize, cancer causes plenty of issues well beyond the fallout of the treatment side effects. I have come to learn that PTSD is definitely one of them.

Today, I would like to pause to remember all of those who have served to protect our freedom and today, I would like to acknowledge the suffering of those whose lived are affected by PTSD.

All too often, the result of a traumatic situation is post traumatic stress. While this is about the stresses of life and coping after cancer, about possible short circuiting in my brain, in 2013, I wrote this in response to something that was a source of even more trauma.
From 2013, for those who may be struggling today, I'm by your side. I'm in a bit of a struggle, too. I will say, I've somehow managed to come far. The stress in my life is back at 2013 levels but I will say, I am dealing with it far better today than I was three years ago. That means I've learned and listened and grown.

I hope, to those who are struggling in this moment and can't see beyond the moment, can read this and feel a bit of support.

Previously posted 2013:

I pride myself on trying to be objective.  I will listen to others.  Everyone gets the benefit of the doubt.  It's the way I choose to live my life.  Because I know this intellectually, this may be one of the most difficult things to share.

I am on an emotional collision course and I can't, not matter how hard I've tried, slow this train down and put it back on the right track.

A few weeks ago, I said something about "impulse control" in an string of email messages when it dawned on me, "this is not a joke."  I began to do some serious soul searching.  This is not to say I haven't always been able to hold my own in an argument.  Yes, I have that hot blooded Italian temperament.

I do love the sound of glass hitting a tile floor.  It stops everything and the act of cleaning up the glass is therapeutic.  I know.  Weird.  It doesn't happen often, that glass breaking stuff, and when it does, I have the presence of mind to toss a cheap water glass.  When I run low on glasses, I make sure the next set is even cheaper.  To put it in perspective, the deliberate breaking of glass only happens maybe twice a year.

Impulse control?  More accurately, a lack of impulse control, a daily occurrence.  Just like the realization that the work piling up around me was not due to an increase in my work load but rather, my inability to keep up at the same level I could before cancer fallout, I have taken a personal inventory.

I know I am my own worst enemy.  I know, too, on every level that allowing myself to be distracted from one task to the next without completing a single thing is, at its core, a loss of control over my concentration.  I give in to the distractions. I act on impulse.  I don't think.

The only one being stressed out or damaged by this lack of discipline or impulse control or however I want to frame the language, is me.  My work, my obligations, my bills, my exercise time, my writing time, my appointments when I'm rushing out the door because I could not force myself to move ten minutes sooner.... it has only affected me.

Until now.  I've become intolerant and I know it's me.  I was never intolerant.  Fly off the handle?  Sure.  But intolerant of any and every little thing?  That's not me.  And yet, suddenly, or perhaps gradually and now it has gotten so bad, it IS ME.

I'm on a path of destruction and it's no longer self-destruction.  I've lost my patience with everyone.  No matter what those closest to me try to do, no matter how much I appreciate what is being done for my benefit, my happiness, my comfort, my enjoyment, I can go from zero to sixty in a millisecond.  Over nothing.  Literally.  Nothing.

I have no idea what to do to remedy this mess.  I practice yoga, I exercise, I meditate, I get 7-8 hours of sleep each night (yes, even on those nights when I'm on west coast time), I do my best to maintain a decent diet.  I have medication to use as needed and professionals to turn to for guidance.  But none of this helps one iota when I lose control.

I hear myself in my head.

"Stop."

"Breathe."

"Overreaction."

"Inappropriate response."

"Irrational."

And.  I Do It Anyway.

I wish I could convey how much this is hurting me.  I'm floating above myself looking down as I behave in ways I don't recognize.  At the expense of others.  I defend my actions with a self-righteous attitude.  As if I have good reasons for acting in ways that are so hurtful and so harmful.

I apologize.

And within 72 hours, another eruption.

They are happening more frequently.  The triggers are stupid.  Sometimes there is no trigger at all.  It's just me, being a bitch.  For no reason.

I don't like this person one bit.

Is it anxiety?  Depression?  Fear?  PTSD?  Damage to my brain which, of course, I researched before I began typing.  Except for depression, my guess is that it's a combination of all of the above.

What I fear most?  I have taken every possible step to address anxiety, fear and PTSD.

That leaves me with one last possibility.  I hope that recognition of the problem, if indeed it is something that has short circuited, will enable me to change what I have come to despise.

Acceptance that I can't change what may have happened to my brain will, I hope, enable me to take back the reigns and regain control.  The act of recognition and acceptance is where I am going to try my very best to focus my energy.  I simply must learn to stay at least a half a step ahead of my destructive acts of impulsivity.

Frankly, my behavior is, and has been for quite some time, unacceptable.  Behaviors can be relearned or unlearned or adjusted.  I'll simply have to find a different part of my brain to use.  And I will.  There's no other option.

Like I've already said, breast cancer is not the great success story it's hyped up to be.  It's simply the one that's been marketed the best.  And the marketing tactics have hidden much and done quite a disservice to those who struggle with things every single day, on one level or another.  Yes, there are far worse levels, but I'm not fond of the levels I've reached in recent months.

Cancer has already stolen so much.  It's not going to steal my soul, too.

Like it?  Share it!

LAUREN TERRAZZANO @NEWSDAY COLUMNIST. NOW GONE ALMOST TEN YEARS. #LCAM

This post originally appeared in January of 2013. Between then and today, I have developed an email relationship with Lauren's dad. He calls himself Helicopter Dad and although our communications are infrequent, each time we chat, I want to reach through the screen and give him a giant hug. Simultaneously, I want to scream into the universe. WHY????????

I wish I had known Lauren as a friend and not just someone via the print of my local newspaper.

Today, I remember Lauren.  Who?  Lauren Terrazzano.  She was a journalist.  She wrote a column in Newsday which is a Long Island paper.  Lauren had lung cancer.  She was treated at Memorial Sloan Kettering.  She is how I found out about Kites for a Cure.  Her writing transcends lung cancer.  She wrote about the stigma but she also penned articles about the stupid things people say and Lance and Elizabeth and the wig guy whose name I was given when I learned I would need chemo and her husband's devotion as a caregiver and every single column is an excellent read.

I was in and out of every building at Memorial Sloan Kettering from July 18, 2006 when I had my surgical biopsy in Manhattan through October of 2007 when my reconstruction was finally complete.  Lauren's columns began on September 5, 2006.  She died on May 16th, 2007.  I promise you will not be sorry if you take the weekend and read every single one of these columns.

This is an article written about Lauren in USA Today on April 22 shortly before her death.  An obituary appeared in the Boston Globe.  

I think her writing had such a tremendous impact on me because I was LIVING what she was writing and I was living it in real time.  I could relate.  It didn't matter that I had an early stage breast cancer and Lauren had a recurrent lung cancer. Cancer is cancer.  Except we know for many, it's not.  Lung cancer....  definitely not the good cancer and definitely the "you did this to yourself" cancer.

I cried the morning of May 17, 2007 when I picked up Newsday and brought it inside.  And I saved the paper. Lauren humanizes lung cancer.  I think of her often. I think of her as my friend even though I have no connection to her whatsoever.  I just learned her father wrote a book which was released in October.  It's downloading to my iPad as I type.  Life, With Cancer

THIS is the face of lung cancer.  This is a voice I miss and one that was silenced far too soon.  This is why we MUST join forces so the day DOES come when there is #NoStigma. 

Lauren Terrazzano Articles by  newsday

If for some reason the articles she wrote don't appear here, they are viewable in my original post. You won't be sorry you clicked to read them. Her voice is strong and speaks to every cancer type. Like it?  Share it!

JUST BREATHE, DON'T BLAME #LCAM

Originally posted January 2013

I'm departing a bit from breast cancer, chemobrain, metastatic disease, research, ranting and raving.  I'm reaching across the aisle.  I've referred to breast cancer as the bully of all cancers and it's something that troubles me.

For starters, my very dearest friend in the whole wide world has a very, very rare form of thyroid cancer.  I wrote about her and her medullary thyroid cancer when this blog was just weeks old.  When she was diagnosed, just two months before something was going wrong in my left breast, I remember springing into action to figure out where in the world they were doing research on medullary thyroid cancer.  There's no glory in finding a breakthrough for a cancer that is diagnosed in about 450 people per year.  Pisses me off because it just does, but there is an element of understanding.

On the other end of the spectrum, lung cancer.  Nearly a quarter of a million Americans are diagnosed with lung cancer each year.  There's no glory in finding a breakthrough for a cancer that is so stigmatized, THE cancer which is the poster child of "blame the patient" for their diagnosis.  Pisses Me OFF.

My grandfather died of lung cancer in 1966.  He was 55 years old.  My dad was diagnosed with an early stage lung cancer in November of 2006 right after I began chemotherapy for my breast cancer.  He died in July of 2007, days after his 71st birthday.  It was not from the lung cancer but it was the lung cancer that began to topple a series of dominoes leading up to his untimely and unexpected death.  Don't even bother asking me if either of them smoked.  It's not the point.

What IS the point?  Lung cancer will kill more about 160,000 people this year.  That is more than colon, breast and pancreatic cancer COMBINED.  Lung cancer kills more women each year than breast cancer.  (Heart disease is the number one killer of women.)  Where is the awareness?  Where is the ribbon?  Where is the compassion?  Where is the empathy? Where is the research?

We do not like be "blamed" for our breast cancer diagnoses.  Why is it okay to lay blame at the feet of those diagnosed with lung cancer?  Why is the very first question asked, "Do you smoke?" and if that answer is no, the very next question is, "Did you smoke?"  WHAT difference does that make??  If you must know, about 40,000 of those diagnosed with lung cancer each year are "never-smokers."  All are stigmatized, treated with that haughty, self- righteous, "you brought this on yourself" attitude by many of us.

I implore all to find their compassion and lose the judgement.  The statistics are startling.  There are no effective screening tools to detect lung cancer at its earliest stage.  Five year survival rate?  16%  .....  While breast cancer is funded by the government at over $21,000 per death, lung cancer?  Less than $1,500.00 per death.

I'm playing the numbers NOT the underlying reasons.  These are lives and every life matters.  What brings this on?  For starters, I was having a twitversation with a couple of young women who are not only upset over the disease, but equally upset over the stigma.  In the midst of the conversation, this appeared on my screen:

@chemobrainfog @lungcancerfaces If we can remove the stigma from lung cancer we can make a big step toward helping everyone w/ this disease
— Otis Brawley (@OtisBrawley) January 15, 2013

@lungcancerfaces Lets stop stigmatizing all w/ lung cancer.I really dont care how a person got it once diagnosed.I want to support them
— Otis Brawley (@OtisBrawley) January 15, 2013

That was a pretty big deal.  Dr. Otis Brawley is the Chief Medical Officer for the American Cancer Society.  He's also very big on evidence based medicine and "show me the data."  I'm all about medical decisions based upon science, proven science.  And I'm all about saving lives.  All lives, as many lives as possible.

So friends, I ask you to think before going down the blame path.  Take a look at what they are doing at Uniting Against Lung Cancer.  In May of 2007, we sponsored a kite in honor of my dad at their inaugural, signature event:  Kites For A Cure.  If that sounds remotely familiar, it's the "for a cure" part that caused a dust-up but in the spirit of not going "there" I'm not going there.

Let's just stick to good will.  No stigma, no blame.  Do you know the color of the lung cancer ribbon?  I'll bet more don't than do.  It's clear.  It's powerfully significant.  Invisible.  We are at the top of the visibility chain.  Let's share it with others.  They need our help.

I told Dr. Brawley I'd jump in to try to see what might be done to remove the stigma and I told him I'd get some of you to join me.  No action is necessary, just a change in mindset.  And a couple of retweets if you are on twitter.  I just registered a new hashtag: #NoStigma.  It's a start......

@otisbrawley Thank you. Will see how we can/shd broaden advocacy beyond breast cancer & remove stigma on lung cancer. #bcsm Our help needed
— AnneMarie Ciccarella (@chemobrainfog) January 15, 2013

Today Like it?  Share it!

MISSING MY DAD #LCAM

For my dad. I miss you terribly. I could really use some sage wisdom, especially in these days and weeks ahead. I love you.

PREVIOUSLY POSTED IN NOVEMBER OF 2013.

This photograph was taken on December 25, 2006.  Less than seven months after this picture was taken, my dad was gone.

My dad knew.  My mom knew.  They knew for more than a month.  In less than 24 hours, we would be told.  First, I had a date in the infusion suite at MSKCC.  Merry Freakin' Christmas.

And MOM... I KNOW you ARE READING .... Please PLEASE... can you skip this one?  Please??

Chemotherapy, followed by the planned lunch at my parents' with my siblings.  Somewhere in this blog is a post describing the absolute despair I felt the moment I heard the words "thing" and "lung" and "surgery"  ....  I already felt like shit which is the general way things go as chemotherapy progresses.  I was perhaps, half-way through my chemo when this news was shared.

That was my dad with a Stage One lung cancer.  In July, in an overcrowded emergency room, he would stop breathing.  It was one of those moments.  I remember hearing a scream and I remember that it was my own scream.  And then, I remember being outside.

The charge nurse appeared before my mom who was sitting on a bench, surrounded by my brothers, in a daze.  I could hear what sounded like a very far away voice.  "We need to know what you want us to do."  She repeated her question and it suddenly dawned upon me that she was asking my mom if they should attempt to resuscitate him and I snapped out of my nightmare and back into the moment.

I recall getting up in the nurse's face.  I recall lifting my finger to punctuate my point.

"You go in there right now and save my father's life."

I recall a snippy and maybe even a dismissive tone, perhaps it was a hint of sarcasm.  Or maybe I was hypersensitive and she was simply all business in that moment.

"I know what YOU want, but that's not what matters.  I have to know what your father would want."

I detached my emotions and I began to recant what my dad had put himself through from January until that day in July.

The 19th to be precise.

July 19, 2007.

As I was rattling off a list of medical procedures, I wasn't two sentences in when the nurse turned on her heel and RAN back into the emergency room.  She was looking at a frail and weak elderly man.  My dad expected he would once again, look like he did in this photograph.  And he fought like hell, moving from one procedure to the next.

Back in January, the night before his first surgery, I went to see him.  I would be at the hospital the following day despite the fact that a hospital is one of the worst possible places for a chemotherapy patient.  While I was there, the phone rang.  He was scheduled to have one or two thirds of his lung removed.  The tumor was between two lobes and the surgeon couldn't be sure until he was in the OR if the tumor was attached to both.

Now it's the night before surgery and that ringing phone?  The surgeon's office.  Mind you, NOT the surgeon, but the surgeon's office.  "Your surgery is not being done tomorrow but you should still come to the hospital.  They will be doing a bronchoscopy."

My dad got off the phone and I was confused and I was extremely pissed off.  This man is diagnosed with lung cancer, he is scheduled for a serious operation and less than twelve hours prior, there's a "change in plans" and the surgeon doesn't think it's important enough to get on the phone and provide information.  I'm certain I remained calm and I'm equally certain I was LIVID and likely, by the time I got into my car, I'm sure I was screaming.  At no one.

Who the hell was this guy?  How DARE he do this and not even have the professional decency to get on the phone.

As it turned out, because my dad looked so great, no one bothered to take a good look at his chart.  He had turned 70 and at 70, additional tests had to be done before they could operate.  This is the age of Big Damn Data.  And computers.  One would THINK that there would be a red flag built in SOMEWHERE.  The doctor's office, the hospital office, the idiots that gave him medical clearance.

The following day, the bronchoscopy was done and this is why certain tests may be useless.  The tissue sample was not cancerous but according to Dr Hot Shot Cowboy Surgeon, "We all know what we are looking at, it's definitely cancer.  This is not a reliable test."  So, I have a question.  If it's not a reliable test, why the hell did you just subject my father to this? Because there was an OR booked?  Because you needed to collect a fee?  Hindsight is wonderful but in that moment, I said none of this.  I only remember when he came to speak to us, he was condescending.  My dad's sister was seated beside me and she asked a question.  He seemed annoyed at having to explain the meaning of the word "necrotic" to her.  No, check that, he didn't SEEM annoyed.  He WAS annoyed.

This guy was already working on a two strike count and I'm pretty sure, that was the moment he was officially relieved of his role as the lead surgeon, or any surgeon.  Hell, this guy wouldn't be cleaning instruments or for that matter, even mopping the floor in the operating room.  In the six months prior, I had been in the operating room three times.  Beyond that, I spent more time in offices with many different doctors and I was not accustomed to this type of behavior.

That was day one of what would begin a very long haul for my dad.  First, they found he had two coronary arteries that were partially closed and required stents.  Then, they discovered an abdominal aortic aneurysm which had to be repaired.  Before that surgery, he had five weeks of radiation to try to keep that tumor in check.

The first attempt to repair the aneurysm was unsuccessful and yet another surgeon was axed from the case.  The day of that particular surgery, I had chemotherapy so I could not be there.  I remember how sick I felt when I got home.  I remember that I couldn't get off the sofa.  And I remember my brother calling to tell me, "The hits just keep on coming."  My dad was under anesthesia for over three hours.  For nothing.

My mom had surgery scheduled during this window of time and there was a point when BOTH of them were in operating rooms at the same time, in the same hospital and I remember running between two different recovery rooms.  I remember the staff wheeling one of their beds past the other so they could wave to each other.  And I remember thinking, "If my oncologist finds out that I was running around like this, through hospital waiting areas, in and out of recovery rooms, he would be mighty pissed off.  But the thing is... in those moments, I wasn't thinking.  At least, I wasn't thinking about me.

The fun truly began after the unsuccessful surgery.  I set out to find the most accomplished surgeon I could to repair the aneurysm.  There are two ways to repair an aortic aneurysm.  One was less invasive and would allow us to move on to this lung cancer issue far more quickly.  The key was to find the right surgeon.  The traditional surgery was far more extensive and would require much more down time.  There was a tumor that kept getting shoved aside because these other issues took priority.  And I was freaking out as the weeks turned into months.

Ultimately, the aneurysm was repaired using a stent.  The skilled surgeon performed magic in the operating room.  It was a five hour operation and if I'm not mistaken, this surgery was performed on the day of my last chemotherapy treatment.  Or it was the day right after and I was couch-bound.

He healed and then, he was right back in the operating room after more PET scans to make sure they were still dealing with the same tumor.  A new thoracic surgeon, a different hospital and finally, the tumor was out.  Up next, four rounds of chemotherapy.  That was the recommendation of the surgeon, of the medical oncologist and of the NCCN because naturally, I already had the medical professional version of those guidelines downloaded and studied.

There was a trip to the emergency room in an ambulance from the oncologist office at MSK during a consultation just to add to the commotion and ultimately, he began chemotherapy shortly after I had my exchange surgery and oophorectomy.  I met him and my mom for his first round of chemo.  I already knew the ropes.  I was a recent graduate of that infusion suite.  The first round of chemo knocked him for a loop.

I was with him the day before his second scheduled chemo.  I remember the doctor saying he knew he had a rough time but he wanted to try one more round.  My dad agreed.  That was the very last time I saw my dad walking.  The next time I would see him would be days later, in a bed, dying.

His body said, "No More" and the charge nurse from that emergency room wanted to make sure of my dad's wishes.

I can tell you this.  My dad was not ready to die.  None of us was ready to let him go.  His death was a shock.  He was on the mend.

This is how he looked just six months later, literally days before he died.  No it wasn't lung cancer that stole him, it was complications that arose afterwards.  I recall his doctor telling me, "He was far weaker than any of us could know."  And, it started with a lung cancer diagnosis.  And it ended because of the treatment associated with that diagnosis.

Before

AND ....  Six Months Later......

After.......

Like it?  Share it!

LUNG CANCER AWARENESS MONTH #LCAM

Originally posted in 2013, I have arranged to rerun posts from prior years to support the lung cancer community. Much of what you will read throughout the month of November was already posted on this blog.

It starts here, today as we begin Lung Cancer Awareness Month. Yep, I get it, we are all aware of lung cancer, much like we are aware of breast cancer and so many other cancers. Yet, it seems we hesitate to talk about lung cancer so awareness campaigns ARE in order.

I can't say enough about Deana Hendrickson, who single handedly put in her mind that she was going to do something to put lung cancer into the social media space. Force people to sit up and take notice and then, take that big leap and take action. She will step back and say it was others but I know SHE is the one who reached out to the people who continue to drive this movement. It has grown exponentially over these past several years and that is a testament to her grit, determination and resolve. 

October 2013:

It's after midnight on the east coast of the US.  Gone are the witches of Halloween.  It's time to roll up our sleeves and make as much noise this month about the LACK of color as we did last month over what did appear to be a toned down pink haze.  Breast cancer EDUCATION month is in the books.

Now, it's time to stand beside those for whom few are willing to speak.  Few, that is, until Deana Hendrickson took to twitter using the name @LungCancerFaces and took the lung cancer community by storm.  She single-handedly began a campaign to shine a light where there is only darkness.  She has started a movement on twitter and in a very short time, has built a solid community.  She is determined and I am awestruck by her will and her tenacity.

I am honored to present Deana, kicking off Lung Cancer Awareness Month 2013.  I'm all in.  Be on the lookout for information on twitter which I'm sure will be appearing throughout the month under #LCAM2013.

Let me introduce myself. I’m not a lot different than most of you. I’m about as average as they come: Nice husband, good kids. I give to charity, recycle, hate ironing with a passion. I’ve put on a few pounds. Nothing out of the ordinary.

All in all, I’m very happy with my life, except for the fact that I AM MAD AS ALL HELL.

When did this anger problem start? Oh, about the time my mom was diagnosed with advanced lung cancer. Funny thing is, once I got over the shock, it wasn’t the diagnosis that pissed me off. It was what I learned about the disease. Could the Internet be to blame for my problem?

What did I read? I read about the incredibly lousy odds she had to live beyond a year, unless she had an actionable genetic mutation (She didn’t. She died less than 10 months post diagnosis). That tore my heart out, but it didn’t put me in my current state. Ah, but then I read about the almost bizarre lack of federal research funding for lung cancer. Hmm, I thought, could there be a connection between the two? 

At that point, I was only somewhat disturbed, but not completely off the cliff.  Then I looked at that stupid graph comparing federal research dollars spent per cancer death. Colorectal 4 times as much? Prostate 8.5 times as much? Breast 14 times as much? Wait, but lung cancer is the number one cancer killer in the US and the world. 160,000 people die every year in the US alone. Huh? I went off the deep end. 

After I came to, I read about the undeserved stigma that people with lung cancer face. I like to call it the “Did you smoke?” factor. Forget about rude. I can handle rude. The real issue is that stigma kills: It keeps research funding for lung cancer low because people think that if everyone just quits smoking, lung cancer will miraculously go away.

Ask Linnea Duff Life and Breath if that’s true.

Ask Janet Freeman-Daily Gray Connections 

Ask Jessica Rice Stage IV 

Ask Tori Tomalia A Lil Lytnin' 

Ask Emily Bennett Taylor EmBen Kicks Cancer 

Ask Kim Wieneke Aquarius v. Cancer 

They’re all never-smokers with metastatic lung cancer. Ask them. 

And my mother? She smoked. She started when she came to this country as a teenage Holocaust refugee. She wanted to assimilate. Everyone smoked back then. Even Doctors. I can deal with her death on a philosophical level, not because she was a smoker and therefore deserved to die of lung cancer, but because she got to see her six grandchildren all grow up, which is a privilege denied to many. I can live with that.

BUT, if someone out there thinks my mother was somehow “asking for it” because she smoked, they need to think again. She didn’t deserve it any more than the terrific ladies I’ve mentioned above. No one deserves this horrible disease. No one wants it. No one asks for it. NO ONE.

So, now you know why I’m so damned mad all the time. Some of you probably think I need help. You’re right. I do need help. Your help. Today is November 1, the first day of Lung Cancer Awareness Month. Don’t look away. Don’t turn on the TV. Don’t forget them. Please read their stories. See their faces. They’re no different than you and me. Help me get the word out on the street about lung cancer.  Lung Cancer Awareness Month needs the public service announcements, the media coverage, the merchandising, the attention. These people deserve to have every damn building lit up in their honor. Why did the Empire State Building turn them down? Where is the big White House ceremony (Yeah, I know it’s already white)? You get the picture. Help me help them. Together we can move mountains. I really do believe that. I hope you do, too. 

AM again:

I do believe this can be done and I do believe we can change the stigma and begin to an education campaign.  This space is open to anyone who might like to share anything on behalf of or in support of the lung cancer community.  Send me an email or post a comment here and I will be in touch.

And, the answer to the question, "Did (s)he smoke?"   .....  

It goes like this.....

 "The truth is, (s)he has lungs.  That's really all you need."    

Today Like it?  Share it!