Ohana means family.

My family gathered in Oahu last month to celebrate my nephew Tyler’s graduation from the University of Hawaii Manoa.

The graduation party was held on the breath-taking Ewa Beach; white sands, turquoise water and a magnificent view of Diamond Head. We ate, drank, listened to cool reggae music and showered Tyler with hugs and kisses.

As I looked upon our very, un-nuclear family, I was overcome by the love we have for one another (and wishing my husband and son were with us). Many of us are unrelated but we still have unconditional acceptance and longing for each other’s happiness.

Our trip had bumps too. Those in my generation might remember The Brady Bunch Hawaiian vacation episode with the unlucky tiki idol?? We had missed flights, navigation mishaps, tummy troubles and even tears. But I only hold onto the beauty of aloha and the treasured moments we shared.

Returning home, I thought more about my ohana and the extent of whom I am connected. My friends I have known for years and some who have been in my life for only a few, are my ohana through-and-through; equal in my heart to those I share a name with.

Then I thought about the moments with strangers. Not the deep, soulful interactions I have with friends but brief encounters where the universe brings another human into my life. You know, the walk-on extras in our not-made-for-TV life. I think the world becomes less scary when we can laugh with a stranger. It reminds me that we are all connected.

So if we are all connected, why do hateful strangers sometimes direct their ugliness at us? Try as I might to stay positive, I feel a little deflated and sad for humanity. I want to believe that all my fellow(wo)men are gentle spirits but that’s the Pollyanna in me. I know the world isn’t as lovely a place as I want it to be but why can’t I have a Protective Bubble of Happiness™ around myself and those I hold dear?

Somedays it is easier than others to wipe off the shit the universe hurls my way. Each day I will try to hold onto the aloha and wrap my ohana and myself in joyous love.

What this world needs is a new kind of army – the army of kind. – Cleveland Amory

Six is a magic number.

I have yet to meet someone battling cancer that does not become anxious before a scan. Whether you are past the magical five year marker or not, the three, six or twelve month scans seem to drive us to “What if?” The scan is the exam you’ve been cramming for and desperately want to ace. Every time.

My six month scan was last Friday. This time around I had a PET scan vs a CT scan. This means I get to be a little radioactive but without the Spider-sense development. After having to reassure my newbie technician that my IV port can in fact be used, I lie in a dark room for about 40 minutes building up the suspense. Then I take a ride in a tube for 30 minutes and we’re done.

My doctor tells there is still no metastatic evidence. Six months clean! They should give out chips or gold stars.

I have potentially nine more rounds of Avastin treatments but if I keep getting clean scans, I’ll open-wide and take my medicine.

Far too many people I know and millions more I do not, are living with cancer. We take the chemo, the radiation, the surgeries, the trails whatever will give us a fighting chance for more sunny days. My mortality gets pushed to the forefront before and after the scans. Whether the outcome is positive or negative, I just want to focus on what’s important to me right now. And what’s most important is the happiness I share with those I love. Little and big joys that give any pain and uncertainty clarity.

“What you do today is important because you are exchanging a day of your life for it.”IMG_3632

The Scoop on Poop (and Pee)

Warning: This will get messy with medical details.

In 2012, ten months after my radical hysterectomy due to cervical cancer, I was facing an unfamiliar surgery… a pelvic exenteration.

A pelvic exenteration is the removal of the vagina (I opted for no vaginal reconstruction), bladder, urethra, rectum and part of the colon. I was left with a colostomy (I call Ethel) and a urostomy (I call Fred).

Colostomy = An opening in the abdominal wall in which the end of the colon is brought through the opening to form a stoma. The stoma looks like the lining of your cheek. Unlike the anus, the stoma does not have a shut-off muscle so I cannot control when I go (or the sounds that emit from my stoma – yes, it farts).

Urostomy (Ileal conduit) = Uses a section of the bowel, surgically removed from the digestive tract and repositioned to serve as a conduit for urine from the ureters to a stoma. One end of the conduit attaches to the ureters and the other end to the, in my case, second stoma.

I have bags that attach to appliances (adhesive patches with plastic ring openings) that collect my waste. In the ostomy world, I am a ‘double bagger’.

It took several months to get used to my new life as an ostomate. My husband, an earthly healer, changed my appliances/bags for the first couple months. Getting the appliances to stick to your skin is something most ostomates struggle with. If it doesn’t stick, it’s a hot mess everywhere. My husband’s warm, healing hands held on the appliances for a few minutes, helped fuse the appliance (and made for lovely bonding during this challenging time). Now that I perform weekly changes myself, I resort to using a heating pad for about 10 minutes to adhere the appliances.

For earth-friendly folks like my husband and I, using all this plastic and non-biodegradable stuff motivates us to find alternatives. So far, we’ve found biodegradable colostomy liners that allow me to flush my poop so I use far less exterior bags. And with the drought we are experiencing here in California, I pee outside with the dog every chance I get. That’s right, I pee standing up.

In addition, finding information on ostomies and people with ostomies was not easy. I did find a very helpful, insightful blog, uncoverostomy.org. In a recent blog entry, Jessica talks about a Tosh.0 segment he did on a girl named Laura who posts YouTube videos about living with an ostomy.

I think the Tosh.0 segment was brilliant (lots of poop jokes, yes, but poop can be funny) and Laura’s videos are wonderful. I don’t think the average person even knows what an ostomy is and I like bringing enlightenment through humor.

Watch the Tosh.0 segment by clicking here. In the extended interview here, Laura mentions the difference between an ileostomy (hers) and a colostomy (mine) = watery output (ileostomy) vs. more ‘soft serve’ (colostomy).

That was a butt load of information I know. Hopefully, you have a better understanding of ostomies so the next time we are together and you think me rude for farting in your presence, you’ll know it’s just Ethel.

Goodbye 2013.

We are quick to make resolutions come January 1. Eat better, exercise more, reduce stress – but I like to think that most of us take care of our mind, body and soul each day without conflict.

I’ve decided to spent today reflecting on all that was great about my past year. I’ll start with My Top Ten Moments of 2013:

  • City trips to SF and Oakland with special friends
  • Relaying For Life with my favorite people on the planet
  • Numerous visits and parties with friends and family near and far
  • Starting this blog
  • Beach house days
  • Holding my son’s hand
  • Welcoming our beautiful niece Gia AND my dear friend’s baby Naomi
  • Spending three days in the Happiest Place On Earth with my Sydney
  • Relaxing in Maui with my husband

And the #1 moment of 2013… REMISSION! Kiss my ass, cancer.

The past three years have been ‘Hell In A Handbasket’ (literally gave my bladder and colon to the cause). Yet with every treatment, scan, surgery, poking & prodding, I remind myself that this bullshit is a pothole on my otherwise scenic life. And the potholes make me appreciate the beauty of my road.

I know each day will continue to bring joy and a pothole or two. So I am abundantly grateful to have love in my house; friends and family that mean more to me than they will ever know. May the New Year bring you all that is good and that your challenges keep you grateful and grounded.

I am ready for 2014.

Autumnal Bliss.

I love the weekends. Who doesn’t? When I was on leave, I lost track of the days but even then, the world felt different come the weekend. And fall weekends are some of my favorites.

Saturday mornings might bring the sounds of leaf blowers, sawing/hammering, children’s laughter (because they are outside playing, yes!) and even when the sun isn’t shinning, the day seems bright and warm, full of possibilities.

Our household moves slower on these weekends; lingering over coffee, listening to my husband toot his flugelhorn (not a metaphor) and reading some good stuff or Pinteresting. Then we start to move. Market shopping = delicious ingredients that will produce yummy slow cooked meals. Autumn smells are exceptionally lovely.

We might visit our favorite neighborhood winery, take Ace for a run on the beach, dinner with family/friends or spend the day tinkering at home. Plans or no plans, I love it all.

Then Monday rears it’s somewhat unloved head. Poor Monday gets a bad rap just because it starts the work/school week for most of us. For me, ChemoMonday™ has proven to be painless (thanks to my PowerPort) and even a time for meditation (thank you meriko for Headspace).

So let’s ‘take back’ Mondays and embrace the start of another week… another week we add to our dash. Happy Monday!

Living the dash.

Back to work. Working out (why did I start with a Bikram yoga class??). Not throwing up. Not being so tired I don’t leave my bed. Cooking dinner with my husband. Drinking some wine.

I prefer this daily life. You can call it ‘the grind’ but its heaven to me.

My first round of a solo flight of Avastin was a mere 30 minute infusion – I barely had time to admire the new PAMF Infusion Center. Remote controlled seat warmer and massage chair – I seriously wished my six hour sessions could have been here! Four days later I have only one side effect, dry nose. “Coke nose” as I unaffectionately call it.

My cancer has never been something I could feel. No pain. Nada. I will not label this a blessing or a curse, just a fact. It was the side effects from the chemo treatments that gave me ‘bad days’. And now that I wear the remission crown, will I be *more* anxious when my six month CT scan comes around in January? All I can say right now is ‘bring it on’. I want to hold on to that sentiment as long as I can.

Each person living with cancer is on a different journey. Even if you share the same cancer diagnosis, the cancer is different in every body. Because of this, cancer seems bigger than the word ‘disease’. Through my journey, I have met many people – some I know personally and some through blogs. I have sat beside their pain, I have peaked into their coping strategies and most of all I have head nodded to just about every word they have said or written. It’s a community that no one wishes they were a member of but grateful nonetheless.

Living the dash, the grind… we all just want to be here longer; to love, laugh, cry and witness the gifts.

“Life is what happens when you are busy making other plans” ~ John Lennon

Disneyland 2013

Closing time.

Yesterday I closed out my fourteenth (cumulative over two years) chemo treatment.

After my third treatment in 2011, I declared that my last treatment was indeed my last. Then I found myself doing five more treatments and adding 28 rounds of radiation too.

I decided that this time I should choose a different word to mark the occasion. Closure. Closing a chapter. Closing time. Then my infusion nurse Shelley starts singing, “closing time, you don’t have to go home but ya can’t stay here.” Song lyrics have always spoken the words in my heart and those couldn’t have felt truer.

I do need to celebrate milestones. If I’ve learned something from cancer, it’s that every good day is meant to be cherished and celebrated. And the ‘bad days’ get held with love and compassion.

So I put away my chemo bag for now and since my insomnia kicks in heavily the night of treatment, I joined a couple girlfriends for dinner and a concert. We ate a delicious meal and danced a little salsa to the Gypsy Kings at a beautiful venue overlooking the valley below. I am happiest dancing to beautiful music with beautiful friends.

“… I still know quite certainly that just to be alive is a grand thing.” ~Agatha Christie