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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  1. I read with great concern that you plan to have Zometa before you finish the work in your mouth. Please wait, because Zometa is linked to osteonecrosis of the jaw, and you do not want to have to deal with that. Get all the oral surgery done first and let it heal before you have the first infusion.

    My PCP suggested a bisphosphonate for me because even though my scans are currently within normal range, I had a huge reduction in bone density because of chemo. (This is the reason that I had to have extensive perio surgery, because the worst of it was in my jaw.) It is clear to me that most doctors are not entirely aware of the danger of bisphosphonates or they would not so blithely recommend them to people who are having oral issues.

    1. Here's more information:

  2. Anne Marie, I'm going to feature your project on Bumpyboobs. Maybe I'll shoot you a couple questions, and if you have time you can answer them back. But if not, don't worry. I'll just make up an image and write some of my own experiences... in any case, we'll get this seen. Okay, my blog doesn't have a huge readership - but it's enough to maybe get some notice.



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