Christmas Twist

Not the Christmas I would have imagined a year ago.  But I can't deny that I am happier this Christmas than I was last Christmas, although it's taken quite a bit of strength and perseverance to actually get there.

I have spent the last year feeling and dealing with so many negative emotions - anger, betrayal, disbelief, hurt, bitterness, disgust, sadness, fear - and I couldn't bring myself to blog about them because why rain that shit down on the wonderful readers (friends and family) who have provided and continue to provide so much of the positive in my life?  Why pour out my twisted up insides any more than I already have?  Believe me, the trials and tribulations of the past year have on occasion sorely tempted me to take up the social media bludgeon and specifically call out the despicable behaviors of my soon-to-be-ex husband.  I confess that it has taken every ounce of willpower not to post, tweet and blog each and every time his behavior has driven me to tears of frustration and sorrow, a calculated tactic (I'm sure) to wear me down with the expectation that I will acquiesce to his ridiculous demands.  I shouldn't really be surprised - that same tactic kept him from stepping up as a man for 17 years.  Probably longer - hindsight is 20/20 and I should have seen the signs.  Some of you did (you know who you are) and I'm sorry I didn't listen.

But Christmas is not a time for sadness or anger - it is a time of joy and love and celebration.  It's Jesus's birthday man!  I'm in a new house that I love and that I look forward to making into a home.  I have a beautiful, kind, brilliant, funny daughter that makes me proud of her every single day.  I am surrounded by a loving family, near and far, generous of heart and hearth and always, always there for me.  I am blessed with friends that accept me for who I am and have my back at all times.  I have co-workers and colleagues, old and new, that won't let me forget just who I am - strong, smart, generous, hard-working.  I have doctors that just won't give up on me (and so I don't give up on myself).  And I have faith that everything happens for a reason and that it will all work out in the end.

The Christmas season is a joyful one, but of course not without its sorrows.  I have prayers in my heart for Paul, Larry, and P.O.'s Ramos and Liu all recently lost to us.  The world mourns.  I fervently pray that our humanity remains intact.  A new year awaits - please let us all be kind to each other. 

Blessings and Love to All.

  

I Can Hear Music

Music, maestro!

Once they get me situated in the PET/CT Scanner, they always say "It'll be about 25 minutes" (which, quite frankly, is a LOT shorter than it used to be 20-some-odd years ago!), but there is no clock inside that tunnel for me to check the passing time.  There is, however, music and that is how I figure out how long I have left - "Let's see, the average song is about 3 1/2 minutes, so I should hear 7-8 songs during the test, OK we're up to song 4 (Aaackkk - not another One Direction song!), so 3 more to go..."  And then I'm done.

Not to keep anyone in suspense - the results were very good, all is stable and the tumor in my rib has even disappeared (it's a funny one that has come and gone several times over the years).  So no changes in treatment, other than stopping the bone-strengthening injection for one cycle while they figure out whether or not I'm experiencing the side effect known as "BONJ" (bisphosphonate-associated osteonecrosis of the jaw) - say it with an English accent, it actually sounds kind of cool (Bonj.  James Bonj.)  No real danger but it is something they look out for when someone is on this medication for awhile and of course it can be problematic if not caught and treated.

So, you ask (you are asking, right?) why so long between PET Scans this time around?  Usually I get this every 5 months - this time it was 7 months.  What gives?  Well, ya gotta love insurance companies.  Mine initially denied the procedure because - drumroll, please - I hadn't had an MRI to prove that my cancer had spread.  Did they NOT read the file and diagnosis - the one that says "Stage IV metastatic breast cancer?"  Apparently not!  Never fear, my onc got it straightened out, it just took a little time to do so.  No harm, no foul but...do they REALLY think they know better than my doctor what should be done for my case?  Rant over - debate amongst yourselves.

Music everywhere 24/7 - a wonderful birthday weekend trip to Nashville with Mary and Patricia (yep, another visit to another rooftop bar!).  I fell in love with this city with its Live Music Venues and its Buy 2 Pair Get 1 Free Boot Sales and its Dueling Pianos (they NAILED "It's The End of the World As We Know It") and its Grand Ole Opry and its Pedal Taverns and its denim and diamonds.  My only wish is that we could have been joined by the rest of our usual posse - but next time ladies, right?

The top photos are of our "Breaking Cancer" GWB Challenge team, captained by Taryn this year.  No more biking (sad face!) but we all either ran or walked the 5K and joined together afterword for a celebratory mimosa (courtesy, as usual, of Joe Tobin).  Taryn's team was in the top 20 for fundraising (owing in no small part to Chris's hard work down in FLA) and she aims to do even better than that next year.  Music to the ears of all of us trying to survive the devil inside.

I am looking forward to the sight and sound of fireworks tomorrow when we come together as a country to express our thanks for the many freedoms we enjoy.  How fortunate we are to be Americans!

 Blessings and Love to All.

Royals

The lands of Kings and Queens, of Westminster Abbey and Notre Dame, of Portobello Road and the Champs-Elysees, of Harry Potter and the Moulin Rouge - what better vacation for a Queen Bee and a Princess?

I had been to both London and Paris before (14 years ago for Patti B.'s 40th birthday) and so didn't expect to enjoy them as much as I ended up doing so.  There is something about sharing these cities with Taryn that made me feel I was seeing them for the first time all over again.  It wasn't just that we visited some attractions that I hadn't the first time around; it was also seeing certain things through her eyes that made it so special - Big Ben, the Mona Lisa, Pont D'Archeveche (the "Love Locks" bridge in the photo above), the London Eye.  She even made navigating the Underground and the Metro fun ("Mom!  This way!").  Of course, dining with my picky daughter was a bit of a challenge (yep...we had McDonald's once in each city) but we did have such lovely meals at a little outdoor café in the Tuileries and another at an out-of-the-way pub in Westminster.  And our last snack in Paris before heading home couldn't be beat - champagne and a shared baguette!

And yes - we did treat ourselves to a little something from Chanel, because despite the fact that we obviously were not going to be big spenders in their beautiful store, the sales people were kind and solicitous and generous with their time as we looked at all the things we could not afford, and treated us like royalty when we purchased the 2 small mini-card holders that were pretty much the only item in our budget.  Viva Chanel!

And so another adventure ends - who knows where next the Princess and I will venture?

Besides back to reality, that is.

A little health update:  Because of the nature of my disease I've tried not to think too much about prognosis (don't ask questions you don't want the answers to, right?).  However, I have been lately pondering the fact that by the end of this year it will have been 20 years since my initial breast cancer diagnosis and 10 years since the stage IV recurrence.  That thinking led me to doing something I have avoided doing for quite some time -  discussing my prognosis with my onc on my last visit in early March.  I basically just asked him - what does he think?

He talked about the specifics of my disease - the fact that the tumor load is small; that there has been little to no progression; that there is no  major organ involvement; that we are only on the first of many chemotherapy drugs available to treat the disease.  All the things we've discussed in the past.  But what he added was this - he sees me as an "outlier,"  someone who is already at a pretty far end of the survival rate spectrum and could conceivably end up at the farthest end (i.e. with a close to normal lifespan) based on the above factors.  No guarantees of course (we both know things can change on a dime with cancer) but room (maybe?) for cautious optimism about the future.  Something I haven't really felt in 10 years.  And I like the term "outlier" better than "survivor" as I feel I've done more than just survive these past 19+ years.  That's me - the outlier (pronounced oot-lee-ay if you're in Paris...no, just kidding!  A little post-vacation humor).

Other bits of news:  A new little prince was born on March 1st - welcome Graham Robert Martyn, son of Warren and mine's niece Erin and her husband Vince.  Little Graham was a wee bit early (5 weeks) but is home (Phoenix) and loving life with his parents and grandparents (Glenn and Sharon).  Taryn celebrated her 23rd birthday the day after we got home from Paris, although "celebrated" might be too strong a word since she promptly got a nasty stomach virus that put her down for a week (actually had to go to the ER at one point when she was severely dehydrated).  And Caralyn (one of the subjects of my last post) walked a couple of steps with a walker - brave girl!

The Lenten season is upon us and soon The King shall rise.  Have a lovely Easter everyone.

Blessings and Love to All.

  

The Battle of Evermore

Five years ago I was recovering from the long and painful jaw reconstruction surgery that (among many other treatment strategies) has helped me to continue the fight to stay alive.  It's been an ongoing challenge to stay healthy, stay positive and stay grounded and yet it has also served to remind me that not all battles (indeed not all wars) are won.  I've been on a win some-lose some streak for quite some time and I anticipate that there are ever more battles to be fought before the war is finally lost.  But don't we all have some challenge, some battle, some adversity that needs to be addressed, attacked, overcome...accepted?

Caralyn is 14 years old.  She has a condition called dystonia, a term so unfamiliar to me that when I went to Google it I mistakenly typed "dystopia."  Well shoot, Caralyn for sure doesn't have that (and those of you that know her know what I'm talking about)!  One day she was a perfectly healthy young girl with a passion for animals and music and community service and the next she was in a wheelchair, in pain and wondering what the heck was going on with her body.  Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures.  It's difficult to determine what caused it in the first place (there are many possible factors or triggers) and even more difficult to live with because there is no cure (YET!) and treatment of symptoms to minimize discomfort is tricky because all have some negative side effects.  Caralyn, who is as generous of heart as anyone I have ever met, young or old, has chosen to fight this with positivity (the girl never stops smiling!), spirit (best blinged-out wheelchair ever!), grace and an abundance of faith.  She and her family have an uphill battle here, one that has only recently begun and I ask you to help them with your prayers and good thoughts.

Carole is 81 years old.  She has a condition called Progressive Supranuclear Palsy ("PSP"), a disease that is often misdiagnosed as Parkinson's because of the similarity of many of the symptoms.  It is progressively debilitating, affecting the nerve cells that control walking, balance, mobility, vision, speech, and swallowing.  Eventually, a person's thoughts slow and they have difficulty communicating, even though they are aware and lucid and understand what is going on in the world around them.  Carole (my mother-in-law) has spent her life actively - caring for her family, traveling, dancing - and struggles to reconcile herself to the wheelchair she is now in, to the limitations on her life, to the sad knowledge of her prognosis.  She has NOT, however, lost her sense of humor.  Ask her how she is doing and she will reply (with a sweet smirk on he face) "I have PSP stupid, how do you think I'm doing?"  And she fights to stay involved and present in the life she has, most recently attending the wedding of her granddaughter Laura despite the difficulty of doing so.  It is a lonely path for her in many ways (none of us can truly imagine what it is like for her) but her wonderful and loving family and friends do their best to make sure she knows she is cared for and protected and valued as she battles on.

Yes, my  journey has been hard - but at least it didn't start at 14.  It has been physically difficult at times - but at least I have had the good fortune to remain relatively active throughout.  We all have our burdens and we all have our blessings and we all  have our battles to fight.  Ever more.

Blessings and Love to All.