Friday, January 24, 2014



And manners.  I am deeply grateful to Scorchy of Sarcastic Boob fame for writing an entire blogpost about my project.  Ditto in the gratitude department to AnnMarie of pink boa flinging Stupid Dumb Breast Cancer who keeps putting it on her Facebook page where she has over 4000 "likes."  And thanks to all who are sharing and tweeting and especially, filling out the survey.

What prompted this sudden interest in gathering information and how in the world do I think I can turn that information into a successful book?

All I can say is this.  I'm taking a leap of faith.  Going with my gut.  Using the brain in my stomach rather than the one in my head.  Hell, I've been guided by the brain in my heart for quite some time and that's caused plenty of pain.

So, Why?

Life can be very complicated and mine has been, and still is, quite complicated.  These complications began at least a year before I launched this blog.  I've been an open book about everything that pertains to me.

However, I don't live in a vacuum.  There are friends, there are parents, there are kids, there is a spouse.

My mom's privacy has been sufficiently invaded but my mom is a part of this community.  My dad, despite his death is also a part of the extended cancer community.  If my dad was the inspiration for me to see this through, the wind beneath my wings, my mom has been my daily cheerleader, on the sidelines encouraging me.  Yes, mom is definitely part of this community.

My kids are young adults.  It's not appropriate for me to invade their privacy in any form.  If one of them makes a decision to open up about any aspect of their lives, it would have to be of their own volition.

And then, there is my spouse.  I've not mentioned him in too many places for a number of reasons which I will share in an upcoming post.  Obviously, that is a significant relationship but I've respected his privacy on every level.  This is my gig and he's a very private person.  He knows this blog exists but beyond that, he knows very little of this aspect of my life.  Indeed, this larger than life aspect of my life is something about which he knows nearly nothing.

There are reasons.  We have had our issues and those issues are the complications to which I refer at the beginning of this post.  Those issues have had us leading separate, yet together, lives for quite some time.  We are in a dance of push and pull and this dance has gone on for over three years.  I've had plenty of time to reflect about life with and life without him.

During those times of reflection, my mind went to very dark places.  I thought about what it would be like to be dating again. I thought about what it might be like to be intimate with someone else, someone who didn't know my story.  How would I tell a new person?  At what point might I slip in, "Oh, by the way, I have scars all over my chest, silicone implants that don't feel so great to fondle and by the way, I can't feel it anyway so don't waste your time, abdominal scars and lest I forget, my cervix is missing, too.  I'm sewn shut."  When exactly does one bring that up?  During the lowest points of this push-pull, I've spent plenty of time trying to visualize the unthinkable.

Those thoughts are the foundation for this project.  I've heard from a wide variety of people: all ages and stages (yes, several mets patients have filled out the survey), same sex couples, married couples, committed couples.  Interestingly, the least amount of responses have come from, wait for it and cue Beyonce, All The Single Ladies.

Maybe being single is such a big damn challenge that cancer boobs and cervical stenosis are the easiest parts of dating in 2014?  I'd sure like to know!

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Friday, January 17, 2014


I'm still here.  I know I've been relatively quiet both on this blog and on twitter, too.

When I was in the world of office management and accounting, January SUCKED.  Somehow, with a disorganized brain and a severe number disability, I found myself sucked into a situation in accounting hell.  Add the confusion of putting a small group health insurance policy in place prior to the January 1 cancellation of an existing policy that was perfectly fine until the insurance company decided it wasn't, let's just say the red I chose as the my color, it works.  I've become the proverbial fire(wo)man.

I'm beginning to feel like I'm walking through a haunted house.  Each and every time I put out a fire, I turn a corner and find another one already burning.  As I stare at papers strewn around me: the floor, the ottoman, the sofa, the coffee table, the love seat, I am well aware that the fire will soon be in my den which has served as my base of operations for quite some time.

My mom is fine.  Other family members are dealing with issues and I'm in the thick of it.  Then, I have my own issues.  Aside from the day to day nonsense and the stupid relationship issues that always manage to pop up at the worst possible moment, there are things.

Things like these.

It's time to get back to the oral surgeon to begin the fun part of this process.  The cosmetics.  It's time to get rid of the temporary bridge that is covering my newly constructed jaw.

I found a tattoo artist in Tarrytown, a town which is about an hour away from here.  My nipple tattoos have faded and I'm quite unhappy with my appearance.  That has to be addressed.  Soon.  And yes, I know it's not nipples but the areola.  Easier to just say nipples.  I have to schedule an appointment.  It's a two step process.  She is an artist.  I'm anxious to get this done but at the moment, it seems my "stuff" is taking a back seat.

Then, I got the go ahead from my oncologist for zomeda infusions.  My bone density has decreased substantially over the past six years despite my daily calcium regimen.  The osteopenia keeps worsening and since I will be on femara for another four years, he gave me his blessing.  I couldn't act on that until I got my new insurance information.  Its arrival yesterday in the form of an email containing the group number and my member ID should have triggered my call to MSKCC.   They will have to arrange for pre-authorization for the zomeda AND for my femara renewal.  I was too busy with those fires to start this process.

My annual appointment with my plastic surgeon is in the spring and he wants an MRI done prior to the visit.  Normally, the appointment would have been scheduled when I left his office last year.  Except, there were no open slots.  How one will magically appear between now and April is quite mysterious but I know it has to be done.  The running theme?  This too will require authorization from the new insurance company.  My implants are celebrating their 7th birthday nestled against my chest wall underneath my muscle and the integrity of the whole situation has to be assessed.  Seven years and I still have phantom itching.  Does that ever go away?  Anyone?

I am going to have lots of down time once I begin all of these appointments.  Have you thought about Sex In Cancerland? Humor me, won't you?  Anything you want to share?  The link directly to the survey is here.  There is also a link in the upper left margin of this blog to the Share Those Moments site if you don't know what it's all about and why I'm doing this.  A note of thanks to the 50 plus people who have already taken the time to participate.

Despite the ongoing commotion in my life, I've decided to jump in with both feet.  I believe the information being shared is eye-opening and I'm certain it will help both patients and doctors alike.  Getting it into book form is a way off.  I know I'm onto something when I see new blogs being launched specifically for the purpose of discussing sex and cancer and they weren't around until after I made this project a matter of public knowledge.

Someone may very well get it done quicker, but I am going to be thorough and thoughtful.  Also, I am in a number of Facebook communities and I just wanted to assure everyone of this.  My intention is to use only what is shared on the surveys. I've been in private groups in the past where members of those groups were using conversation threads for the purpose of gathering information.  They kept the book quiet until we were all ambushed.  I felt used and violated.

Thus, I have no intention of initiating or participating in conversations to compile information.  I put everything out in the open for all to see.  I never want to be that person, sneaking around behind the scenes with an agenda.  I've always been an open book and I'll remain open and honest.  And I will do this with the integrity and the sensitivity it deserves.  Having said that, it's not book-worthy unless it's a compilation of many stories.  There are enough memoirs on the shelves and there are enough books written by doctors or professionals without real patient input.  The success of the project will depend upon all of us. Help me make it happen?

Happy Friday.  If the blog posts or the tweets are sparse over the next few weeks, it's all because of the damn firehose.

Thanks to Billy Joel for help with the title of this post.

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Monday, January 13, 2014


My heart is heavy.  The year has started with many of my friends in the metastatic community facing a number of serious challenges.  Last night, I learned of the death of yet another young woman and I am heartbroken.  Once again, heartbroken.

If you haven't been along for this blog ride, you may not be familiar with the Stage IV Traveling Pants.  On January 10th, they were featured in an article in a Michigan paper.

Yesterday, just two days after that article appeared, Stephanie Maltby's life was cut short.  Stephanie was just 34 years old when she died of breast cancer.

Stephanie's sister, Shannon Kegebein was the genius behind the traveling pants and she has been the guardian of those pants. The first person to sign them was Stephanie and soon after, they began their journey around the globe.  They just made their way back to Stephanie after a visit in Israel.

Shannon is my friend.  She sent me those pants so I could messenger them to a friend in Canada.  When the package arrived, I waited until I was alone to open it.  It was impossible to blink back the tears as I read the messages of love shared among so many.

Much love to you, my dear Shannon.  And love and support to Stephanie's entire family especially her three young children.

And a tremendous debt of gratitude for the kindness extended to Stephanie and her cousin Brenda by Sharon Osbourne last March when Stephanie was in Los Angeles.

Rest peacefully, Sweet Stephanie.

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Monday, January 6, 2014


About that project..... Share Those Moments.  or, maybe (SIC) would be a good acronym.  The parenthetical ends are poetically appropriate.  It's the afterthought.  Or, it's within the confines and constraints we've self imposed.

First, thank you to all who have already taken the time to fill out the survey.  Most importantly, if you haven't, every question is optional and no identifying information is required to participate.

Second, I know partners may be hesitant and some of us may be hesitant to even suggest it to our partners.  The partners who are active in social media will find the thing sooner or later.  And they will likely not be the partners of the participating patients.  I'm curious about the "we say, they say" aspects which is why I've included a request for input from at least some partners.

Random thoughts about what I'm doing and the manner in which I've chosen to do this.

My goal is to tell all of our stories, perhaps as one big collective story.  The logistics of putting the information together will become clear as the information is shared.

The questions about specifics regarding age, surgery, treatment, disease stage are simply for use as a reference point.  I left the rest very open ended.  I don't want to lead with questions.  If I chose that path, I would only be sharing responses to questions that are in my mind.  Kind of defeats the purpose, don't you think?

I'm sure there are issues that are not even on my radar, thus, if I ask direct questions, I know I will miss many important topics of discussion.

Although the survey has been directed toward breast and gynecological cancers, I invite and welcome participation from all. My circle of friends is primarily within the breast, ovarian, cervical, uterine crowd.  However, my circle extends to those with other cancers, too.  Two of the fiercest advocates I know are involved with the lung cancer and the brain tumor communities.

Another point that is very close to my heart?  I am very involved in the metastatic community and there are a number of women who are in the midst of some very rough waters.  Sex seems silly and somewhat petty when I look at this from their perspective.  I am not turning my back on them and I'm not trying to trivialize or marginalize or exclude them.  I did some serious soul searching before I proceeded with this.  It wasn't until I came to terms with the fact that there are needs all along the continuum of care that are not being addressed, needs that may be having a terrible negative impact on some of us, that I made the choice to move forward with this project.

Quality of life issues matter to each and every one of us.  I still contend that the needs of those who are staring down the barrel of a gun are most important and I will continue to advocate on their behalf.  Fiercely.  Comparing needs, however, serves no worthwhile purpose.  I choose, like I always have, to leave a pecking order out of this.  There are unmet needs in too many areas.  Issues surrounding sex and intimacy are near the top.  Minimizing any issue, sexual or otherwise, because, after all, we should be grateful to be alive is a quick path toward emotional implosion.

Thank you all for the comments on Friday's blog and for the support on twitter and Facebook.  I tried to keep up with everyone to properly thank those who have tried to help get the word out.  I'm sure I failed at thanking many and if you happen to have been one of those I left out, please know it wasn't intentional.

I'm great at forgetting things.  But then, you already knew that, didn't you?

And before I forget, to those who have requested a flyer of some sort to share in support groups or in doctor's offices, yes, it's on my to do list.  And I will get that done!

Any other questions, concerns, comments, criticisms?  You know I have an open comment door, unless attacks are being directed at someone other than me at which point, they will be deleted.  I'm the only one who can be bullied, criticized or name-called in this playground.

Something you feel you would like to say to privately?  Send me an email.  If you'd like to talk, we can use the phone.  Want to really challenge my chemobrain, go ahead and suggest Skype or a google hangout or some other form of video chat.  I'll give it my best shot!

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Friday, January 3, 2014


I need your help.  I've decided to roll up my sleeves and dig into a project.  It's not my project, it's really a project for all of us.




Cancer, any cancer, doesn't just quietly come and go.  I'm not breaking any ground with that statement and I'm certainly not breaking any ground when I say that cancer's tentacles find their way into almost every corner of our lives.  The deepest and darkest corners seem to be those surrounding issues of sexuality and intimacy.

It seems to me that this is an aspect of our lives that isn't discussed at great length and it seems to me that is a tremendous disservice, particularly when we talk about quality of life.

We are sexual beings.  Intimacy, or lack thereof, can help steady our step or it can cause the bottom to fall out from beneath our feet.

I've been digging around and I can't really find anything that is written from the perspective of the voices that really matter most:  Those of us who've been diagnosed with cancer and our partners.

There are some doctors who are doing a fabulous job of opening dialogue with their patients.  The question is, however, are we being completely open and honest?  It's not exactly the easiest subject to discuss.  How can our clinicians help if we aren't able to speak in ways many of us might find to be quite bold?

Yet, the only way to shine a light into that darkness is by speaking openly and honestly and boldly.  I have plenty to say, yet it's not something I've discussed with my oncologist.  These are conversations that take place within a close circle of inner friends.

Even with those closest to me, they are not easy conversations.  Many of us are suffering in silence.  Or we may be having a great time behind closed doors.

I've launched a project.  The website went live a few weeks ago and it was done under the cloak of anonymity.  I wanted to think it through before I fully committed to it but I have come to realize, the minute the aha light bulb illuminated above my head, I was already all in.

Share Those Moments is my baby.  Please take a look at the website where I've outlined the project and what I hope to accomplish.

I have already received input from a number of people and from what's already been shared, I know this has the potential to be life changing for every one of us who has struggled with our sexual relationships and issues surrounding intimacy.

There is nothing more powerful than hearing your story, told by someone else.  You know.  When you are listening to someone and the entire time, the only thing you can do is shake your head, in a state of, "Really???  You feel that way, too?  You mean it's not just me?"

I'm here to tell you it's not just any one of us individually.  It's all of us, collectively.  This is, I believe, what they call, crowd sourcing information.  This needs a crowd.  A big crowd.

I expect the stories are going to have a common theme.  Our scars, the lack of sensation, our partners who may fear they are hurting us.  And on and on.

Please consider sharing your story.  I've set up surveys.  All of the links can be found on the website.  And even if you don't want to share your story, please help me by sharing this information within your circles.

Our power to change this lies in the vast number of people who are affected.  The more people who are willing to tell tell their stories, the better it will be for all of us.

I have vowed to protect the identity of anyone who chooses to share any information.  Although survey monkey does register IP addresses, I'm not savvy enough to figure out how to trace that back to the person behind the screen.

Besides, I'm not looking to invade anyone's privacy.  I'm looking to help.  I'd like to make a difference.  I'd like to see a book written that addresses the concerns that we live with on a daily basis.  I'd much prefer to place the facts in front of our medical professionals rather than have them try to jump into our heads.  Without a complete and true picture, they have no chance to guide us.

Let's make a difference.  Together.

I hope you have a moment to spare.

(Now, before I chicken out and hide behind that anonymous thing, no time like the present, thus, I'm hitting the publish button.  The address of the site for detailed information and to participate is

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