The Spirit of Christmas Past

I am feeling unusually contemplative and reflective this Christmas season - thinking often of the people, places, things and events that I have been fortunate to enjoy in my 58 years; pondering the "what if's" we all ruminate about on occasion; and remembering all the Christmases that have made me smile (for it IS my favorite holiday - which is likely a surprise to those of you who know how I feel about my birthday!).  So...my blessings (some anyway) so far.  In no particular order.

I've seen sunsets and sunrises, lovely pale moons and stars and constellations (Cassiopeia being my favorite).  Snow-capped mountains, glacier fields, pristine beaches, fields of flowers, endless stretches of flat dry desert, cool damp caves.  And God finger-painting in the sky when I got to witness the Aurora Borealis in 1977.  Still one of the most breath-taking memories I will ever have.

My children - Taryn, Emily and Ian - who will always be my greatest accomplishment in this life and who have always made my heart sing. I've been lucky to experience so many important events in their lives - vacations, proms, graduations, a wedding, a birth, new jobs, new homes, happiness and heartbreaks - and am ever grateful to be able to continue spending time with them (and with Chelsea and Addison as well).

I've gotten to spend Christmas in Hawaii. I've observed and delighted in the magnificence of the Grand Canyon. I've kissed the Blarney Stone.  I've hiked Mt. Rainier.   I've had dinner at the Eiffel Tower and gazed at the love locks on the Pont D'Archeveche.  I've visited the Rock n' Roll Hall of Fame, Cooperstown and the Basketball Hall of  Fame.  I've gambled in Las Vegas. I've ridden the London Underground. I've been swimming in the beautiful waters of Florida, California, St. Thomas, The Bahamas, the Cayman Islands, Cozumel. I've had drinks in rooftop bars in New York, Charleston, Nashville, Austin and Chicago.

I am and have been rich with family near and far (and some of whom are no longer with us) - Mom and Ken, Bruce, Bonnie, Dave, Chris, Gubby, Aunt Barbara, Lisa, Bud, Mike, Aunt Pat, Fred, Susan, Andrew, Tree, Aunt Mary, Kelly, Laurie, Teddy, Pixie and  Rory.  Extended family of aunts and uncles and cousins and 2nd cousins and 3rd cousins and former in-laws and "added family" through marriages and births.

I've been (or am) a runner; a tennis player; a racquetball player; a yoga devotee; a trapezer; a skier; a waterskier; a spinner; a Zumba dancer; an archer; a walker; a kickboxer; a barre practitioner; an ice skater; and a biker.  I've ridden dirt bikes, kayaked, hiked and roller bladed.  I've been remarkably injury free despite all this activity, my only major trauma a torn ACL more than 20 years ago.

I have loved deeply (and in some cases been loved back just as fiercely) by Tommy, Chris, Thomas, Steve, Joe, Tom, Rick, Tom and Warren.  Yes I agree - no more Toms!

I love my house, my bow, my dog, my Christmas ornaments, my magnets, my photos, my mother's watch, my Broncos, my Yankees, my boots, my fandom collections, my books, my dining room table, my music playlists, my old concert tickets and my passport.

Where would I be without my friends (past and present)?  Patti, Mary, Patty, Stephane, Tim, Peter, Jackie, Joe, Mary, Elisa, Laurie, Gary, Kent, Stephen, Ingrid, Pat, Scott, Vinnie, George, Joanne, Kevin, Jodi and Kathy.  Not to mention the many co-workers over the years who've been important to me - from Hess, from Getty, from Target, from BP.

I've survived 23 years of cancer treatments including: 11 surgeries, 6 radiation therapies (and...one to come next week on the 9th right rib); 6 different chemotherapies; 9 different medications; 4 oncologists (and yes, my current onc is my favorite); 3 times losing my hair, eyebrows and eyelashes; and my current load of about 13 bone tumors.  This is my past, my present AND my future.

Most importantly though, I have celebrated 58 Christmases and there is not one, NOT ONE, that hasn't been magical, joyful, wondrous, festive, merry, spiritual, delightful and loving.  Every year I see a giving spirit in the world.  Every year I find my blessings have multiplied. Every year my heart is full.

Blessings and Love to All.

Marry You

Is there anything more life-affirming, more uplifting, more beautiful, more joyful than a wedding?  It gets you out of your own head, focusing solely on the happiness of the day and the couple making their lifelong commitment to each other.

My cousin Lisa married her soulmate Tony at the end of July.  It was a 2nd marriage for both - but you couldn't tell by the way they looked at each other during the ceremony.  It's clear that each thinks they are the lucky one for finding the other - and in truth, they are both blessed.  This wedding was a true family affair, with both sides pitching in to make the day as perfect as possible for them. And as you can see from the photo - it was a beautiful day made all the more lovely by the smiles of the glowing bride and groom.

I love that neither of them, as they grew older, gave up on the possibility of love.  I love that they left their hearts open.  I love that they kept faith in the sanctity of marriage.  And most of all, I love that they found each other for they are truly two people who deserve this kind of happiness.

Over the years, each time I saw Chelsea and Ian together I would think "Oh, yes, of course.  They belong together."  They make each other shine bright; they have each other's backs; they honor not only each other but also their relationship.  I love the man my son has become since being with Chelsea; I love the woman my new daughter-in-law is with Ian.

 I had the honor of officiating at their wedding and was very moved by the ceremony they chose and the vows they made.  It was clear how important marriage is to them, how seriously they take this commitment.  They may be young but they clearly fully understood the pledges they made that day and made them lovingly, fearlessly and joyfully.  And in addition to my own role, they thoughtfully included Taryn, Emily and Addison to stand up for them as a bridesmaid, reader and flower girl respectively.  How wonderful it was to see all my children and my grandchild celebrating this amazing union.

I am not someone who is overly sentimental, emotionally demonstrative or particularly romantic.  What I felt most often during the ceremony and reception afterward was how proud I am of my children, how appreciative I am of the adults they have all become, how fortunate I am to experience yet another milestone in their lives.  I am in awe of who they are - kind, smart, hard-working, loyal, compassionate, funny and loving. They are and always will be my greatest accomplishment. 

Lisa and Tony's wedding reminded me how much I love my family; Ian and Chelsea's wedding reminded me how much I love my children. What priceless gifts these are, ones that I am infinitely thankful for.  Lisa and Tony, Chelsea and Ian - way to put a smile on my face!

Blessings and Love to All.

99 Problems

As I recover from jaw surgery (more on that later) I am reminded of the difference between the big problems I face as a result of my disease and the little problems I face as a result of it.  When the big ones come, it's easy to forget just how many small "issues," "adjustments," and "accommodations" I've made. Most of the time I put on a brave face and don't bring up all the annoying complications from surgeries, chemotherapies, radiation, and medications.  But sometimes...a girl's just gotta complain:

• The drooling!  It doesn't get much more annoying than that.  Eating in front of other people?  So not enjoyable.  Not to mention the dripping onto my chest or clothes.
• Bald spot.  No, it's never going to grow back.  And no matter how well it's covered up in the morning, it ALWAYS shows by the end of the day.
• Thinning hair. Everywhere.  No chance of it ever growing back while I'm on these medications, and I'm on them for life.
• Speaking problems.  Some letters just don't get said/heard properly as a result of the reconstructed jaw. B, F, V, P you suck.
• Trouble swallowing.  A result of the tracheostomy.  Lot of scar tissue in there.  Like I'm chewing my cud sometimes.
• Food tastes different.  I eat a whole shitload of Chicken McNuggets because it is one of the few things I can actually taste and they TASTE GOOD!  Yeah, yeah everyone tells me I should eat healthier.  Yeah I should.  Not gonna happen.
• Food is for nourishment, not pleasure.  I used to enjoy going out to new/good restaurants.  No fun there anymore.
• Ongoing/various GI problems.  Think I'll keep the details of this to myself.
• Missing teeth - years spent chewing only on the right side because I have no teeth on the left side.  Some things just cannot be eaten as a result.
• Gnarly bad teeth.  While I got the bottom bridge done, it will be awhile before I can do the top teeth.  Not attractive.  And people who don't know me/my background?  They just think I'm lazy about taking care of them.  Also...not attractive.
• Scars.  Too many to count, most visible.  I'm going to keep getting tattoos until they outnumber the scars.  This could take awhile.
• Different size breasts (a result of the lumpectomy 23 years ago).  Bras will never fit well.
• PET Scans every 3-6 months.  Prep work before.  Wicked ass headache after.  Can't wait for the next one.
• Jaw swelling.  Medication makes this happen about once a month.  It actually becomes painful to speak for any length of time.  For some of you this is a positive result heh heh.
• Hand tingling.  Have to stop often to hang my hands at my sides and wiggle my fingers to get it to subside.  Makes things like blow-drying my hair, writing with a pen, or holding my bow difficult.
• Low white blood cell counts.  Risk of infection all the time.  Resulting in neutropenic diet, use of lots of Purell, and carrying around a thermometer with me.  Just in case.
• Left ear clogs a lot.  A result of the jaw reconstruction from 2009.
• Pain.  Is it cancer related?  Injury related?  Aging related?  Spin the wheel.
• No IV's in the right arm due to lymph nodes removed in 2004.  23 years of picking on the same vein in the left arm.  Luckily it appears to be a hardy sucker. For now.
• Weight fluctuations.  I've been 98 pounds, I've been 130 pounds.  Yeah, you're all saying it's not something to complain about (I get it. I'm not fat.) but to me? It brings a whole mess of "adjustments" each and every time I go up or down.
• Brittle nails.  My manicurist is a saint dealing with these obnoxious digits.
• Dry lips.  I should buy stock in Aquafor with how much of it I buy.

OK I can probably think of more but I'm starting to depress myself (hey - there's another one!).  You get the idea - there is more to this disease than just the major surgeries and harsh chemotherapy regimens.  I'm dealing with a lot on a daily basis and...I just needed to share that.  #sorrynotsorry

So on to my latest "big issue."  Some months ago, it was discovered that the titanium hardware connecting my reconstructed jaw (the fibula bone) to my natural jaw had become exposed and the gum flap had deteriorated as well, leaving me open to infection and further depreciation of the tissue. It seems that it is quite unusual for those who have had this surgery to live so long after the fact (it's been 8 1/2 years) so I went for consultations with my original surgeons to figure out a solution.  Not as easy as it sounds as possible answers ranged from "let's just watch it" to a complete re-do of the surgery with a new fibula (Yikes!).  We decided on a middle ground - debridement of the bone, removal of the implants, removal of a portion of the hardware (assuming the bones had fused well together) and sewing up the gum flap, the goal being to keep the jaw functioning and stable.  I had the surgery last Thursday (a huge thanks to my brother Bruce for driving me in, bringing me home and taking care of Rory for the last 6 days) and have been recovering since.  Not as easy a recovery as I thought it would be, although Percocet helped!  In addition to the expected jaw pain I had extremely swollen lips (I looked like an over-collagened Kardashian) that are now grossly scabby; joint and muscle pain (a side effect of the anesthesia); and headaches.  Today is actually the first day I'm feeling closer to human.

This may not be the end of it however.  I go back Thursday for my post-op where we'll evaluate if anything further needs to be done. There was talk of possibly going for hyperbaric oxygen treatments for better healing. Truth be told, I am petrified of the prospect of doing the original surgery over again - it was horrendous.  The "good" news?  We're not dealing with a tumor situation here, just a "repair" that hopefully will last a good long time.

So there you have it, the big and the small, the major and the minor, the bad and the worse.  And you know what?  I've got 99 problems - but being dead ain't one of them.

Blessings and Love to All.

 

Into the Mystic

Every day (well...most days) I head out for an early morning walk around my neighborhood.  Even if it's cold. Even if it's drizzling.  And because I am one of those people who must listen to music while walking (or running), I put on my headphones and start my little journey with Van Morrison's "Into the Mystic."  From there the iPod is on "shuffle" and who knows what will come up.  But there is something about "Into the Mystic" that stirs my soul; that creates in me a longing to start the day; that causes me to look up to see (on occasion) the moon, the sun rise, the wild canaries in the trees, the slowly-moving clouds; that reminds me how much I love the  magical and the mystical despite my supremely practical and organized nature.

And because I begin this walk in an inspired and uplifted fashion, I of course must end it just as joyfully.  So I dance in the street all the way down the last block until I reach my house.  And yes, I have earned the "Crazy Dancing Lady" moniker from my neighbors who smile and give me a thumbs up when they see me.  Of course, that's to my face - behind my back I'm sure there are eyes rolling and forefingers circling temples.  But I figure it this way - if I start my day feeling happy and then later on things happen to anger, irritate or otherwise addle me - I have the opportunity to remember that for at least part of that day I was free and jubilant and lighthearted.

Which, by the way, also comes in handy when you get the "your PET Scan was not terrible" phone call from your onc.  Well clearly it was also not great.  So here it is in a nutshell - the 3 tumors that were radiated are gone.  However, 2 new ones have taken their place (both, fortunately, still in the bones) and the remaining tumors show small growth.  So progression, but not aggressive progression, of the disease and still no major organ involvement (probably my biggest fear each time I have one of these scans).  And the tumor load remains small compared to what it was in 2011.  The good news, of course, is that there is yet ANOTHER new drug specifically made for my style of MBC that we can use to try to slow or stop further progression (or, in best case scenario, send at least some of those nasty tumors into the mystic!).  I start it within the next couple of weeks and according to my onc, the side effects should be quite similar to what I experience now (i.e. with minimal quality of life impact).

The unfortunate additional consequence of receiving this news is the inevitable self-reflection on where I've been and where I'm going with respect to this disease.  I have to allow the negative thoughts, feelings, musings, and speculations wash over me and fill me up and frighten me until I have fully processed.  I have to consider how I'm going to share the news with family and friends.  I have to speak those fears and concerns out loud with a select few.  And I have to remind myself over and over and over again that although this disease is going to kill me sooner than I'd like - it's not going to kill me today. (It can't - my friend Kathy says she's not finished with me yet).

And then, of course, I remember that I've been here before with the "not terrible" PET scans of the past.  There have been dozens of "not terrible" PET scans and there is always a plan.  Dozens...and I always remember how lucky I am to still be here when others have not been so fortunate (rest in peace Gina Catapano, you were so very loved). Dozens...and I still manage to find quite a bit of humor in this crazy, weird, vexing, supernatural journey I've been on for the past almost-23 years.  Dozens...and I keep on going.  Every. Single. Time.

Because not only is Kathy not finished with me...I am not finished with me!  So don't expect me to slow down and certainly don't expect me to head into the mystic anytime soon.

Blessings and Love to All.

Do It Again

 

 Let's first get the boring stuff out of the way - I have to (once again) have a minor procedure on one of the tumors in my body.  Same one I had on the shoulder and the hip - stereotactic radiosurgery - this time for a tumor on my spine, located at what they call T7 (or the 7th vertebrae in the thoracic region).  T7 (I'm starting to think I'm a cyborg) is not really bothering me in any way, but it IS the only tumor left that is growing (i.e. not stable) so the onc felt it would be best to just eliminate it rather than wait for it to cause pain.  This way we can stick with my current medications which are doing their job for the most part in keeping the cancer at bay.  It is expected that everything will go as the others have gone - fairly quick recovery, minimal pain, positive result afterward.  I already had the simulation (preparatory scans) done last Tuesday (and am the proud owner of 3 more "locator tattoos") so I'm all ready to have it done this Tuesday.  Take that T7!!

Now onto the good stuff - we finally had Girls' Weekend!  Our destination this time was Austin, TX and although we were missing a couple of folks (Mary Cannon and Patti B.) we had a terrific time in a city that surprised us a little bit.  It was definitely more "hippies and hipsters" than "cowboys and country music" but for sure a fun atmosphere.  Got a little bit of history, a little bit of nightlife, and of course the enjoyment of a rooftop bar or two!  It was juuust a bit colder than we had expected but certainly not enough to stop us from having cocktails at an outside venue our last night in town.

Perhaps the best part of Girls' Weekend (and I know I've said this before so forgive my redundancy) is that I really get time to catch up on the important details in my friends' lives.  Oh, I usually know overall what is going on (thank you Facebook!) but it is far better to hear their voices, see their eyes, watch their reactions as we discuss our work, our families, our concerns and our joys.  It is much more gratifying when we laugh together and although I am not much of a hugger...a hug from one of these ladies is always a welcome experience.  Being with them is an escape TO something rather than an escape FROM something for me.  They laugh at my funny jokes and roll their eyes at my not-so-funny jokes (and believe there are way more of the latter!) and really HEAR me when I have something significant to say (which admittedly is not often but hey...it does happen once in awhile).  They overlook my flaws (or, on occasion when necessary, call me out on them) and embrace my quirks without judgment.  They are kindness and light and compassion and joy and I am fortunate to call them my friends.  So I will once again send a shout out to Mary, Patty, Jackie, Elisa, Mary C. and Patti for bringing all that into my life.

It was colder in Austin than expected, and warmer in Iceland than expected - how about that??  Our annual mother-daughter trip included Taryn's dad Chris this time around as she wanted a vacation with just her, Mommy and Daddy (those childhood trips to Disney were a long time ago!).  Iceland turned out to be a really unique and amazing country - lots of glacier fields, lava beds, geothermal springs and Viking history.  We spent most of our time in Reykjavik, but did take a tour of the Golden Circle (where we saw Gullfoss waterfall, the Geysir springs and Thingvellir National Park), and on our first day enjoyed the most wonderful time in the Blue Lagoon - 30 degrees outside but 100 degrees in the pool where the silica mud mask made my face feel so soft for the next several days.  The waterfront was spectacular, the nightlife included lots of live music (and Einstock beer!), and we found plenty of American style food to eat for us picky eaters, although we couldn't find a McDonald's (Taryn and I try to go to a McDonald's once in every country we visit).  And although Chris did pick up a nasty cold, he was a trouper throughout, visiting museums and braving the cold to walk the city.

The one thing we missed was the Northern Lights - it was just too overcast the whole time we were there.  It was a great disappointment to Taryn, who has heard me speak many times of how in my first year of college at Oswego I unexpectedly got to experience the magical, stunning display of the Aurora Borealis.  She chose Iceland specifically for that reason, wanting to share in having that feeling of watching God fingerpaint in the sky.  And I so much wanted to see her face watch those lights dance, wanted the 3 of us to have this particular shared experience, wanted my own heart to pound like it did those 40 years ago.  Don't get me wrong, we LOVED Iceland and are so grateful for all we did get to see.  But don't be surprised if someday we go chasing those Northern Lights again somewhere else (we're told Alaska may be the way to go!).

One last thing to share - as many of you know, my stepson Ian is getting married this summer to his fiancée Chelsea.  They have done me the honor of requesting that I officiate at their wedding and so I am now an ordained minister at the Universal Life Church.  I am blessed to have these 2 in my life and so grateful for the opportunity to bring them together in marriage!

Blessings and Love to All.