What I Did This Summer (so far).

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Remember when summer felt like it lasted for-ev-er? Languid days, riding bikes to the public swimming pool, staying all day (for a quarter!) with our sack lunches and sodas wrapped in foil (like that kept it cold?).

We didn’t go to camp, day or otherwise – we put on talent shows on our front lawns, we created homemade slip-and-slides, we chased down the ice cream truck and we played hide-and-seek once the sun went down. It was our neighborhood version of camp and it was the best. The days pasted slowly and we were always sad when Labor Day arrived because it signaled the last weekend of summer vacation. That’s right Millennials, schools across the country started in September.

Now we are grownups and summer time, unless you are an educator, does not mean automatic time off. We pack so much into our precious summer months that the days seem to fly by. Before you know it, you are bombarded by HalloweenThanksgivingChristmasChanukkah decorations in every store, all while you’re still wearing shorts and flip-flops!

I’ve spent the past two summers in the hospital, in treatment and recovering; not really memory-making stuff. However, what I did take away from these summers is that being surrounded by kind and loving people gave me the greatest joy and strength I never thought I had.

My healthy self is getting out this summer. Away trips, camping and straycations; concerts and lazy evenings on the patio will fill my days. I want this summer to last for-ev-er with moments big and small that remind me that life is truly beautiful.

So far, I’ve spent four lovely days in New York with my dear friend meriko. I stood in front of Monet’s Water Lillies at MOMA and was captivated by its enormity. We dined on amazing food and drink, danced on roof tops and attended a wedding at a venue straight out of your favorite summer camp movie. I have loved NY since we first met; she’s a fast-talking, glamorous lover who holds a special place in my heart.

On the heels of NY, was our town’s annual Fourth of July Parade. It’s a real Norman Rockwell Saturday Evening Post cover complete with dancing ladies, lumberjacks and 4-H clubs. This is our small town’s finest hour (it’s literally an hour long). We line the sidewalks on our “Main Street”, hippies and conservatives alike, feeling proud and gosh darn happy.

DSC_0082Once again our village came together for another Relay For Life event. We were a big-hearted team made up of long-lost cousins, wee-walkers and friends new & old. Pete & Tony served up delicious pork sliders that were an event favorite. Relay is like Burning Man, you take away what you give… and our tribe happily gave with their hearts. These people I call my village rock my world and I am eternally grateful for their generous, loving spirits.

Here’s to making more summer memories at home or elsewhere; with the people you love or on your own. I continue to be open to the gifts the universe sends my way and treasured memories have always followed. How will you fill your summer?

Ohana means family.

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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

Loving Support.

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When I received my cancer diagnosis, I didn’t immediately run to the nearest support group or therapist. But thankfully, there is no shortage of support in the cancer community. Art classes, Eastern medicine practices, fitness programs, massage – the resources are plentiful.

Then last spring my cancer had metastasized to my liver and it scared me.

I had met a couple of women who had told me about a local support center called WomenCARE in Santa Cruz County. A place for women (and their families) living with and living through cancer.

It was there I found ARM-in-ARM (women with Advanced, Recurrent or Metastatic cancer). These women have become part of my village. A place where we are brutally honest about our disease, gentle to one another and down right jovial. I am actually quite awkward with strangers and never thought I would be comfortable in ‘group therapy’. However, this feels more like coffee with friends who happened to all have cancer.

Many of the women have been in the group several years together, but there are two of us who are ‘newbies’. The others have shared stories of friends from the group of whom are no longer here, but how their presence and friendship is still felt and thought of.

Sadly, most recently, a firecracker of a woman is now gone from our tribe. Her memorial was beautiful and heart-wrenching. Her brother reminded us that she did not see her metastasis as a death sentence; she was an advocate for much including metastasized breast cancer. Every fiber of my being wants to scream “this is not fair”! She has clearly gone too soon but during her time here she had done so much for so many.

I believe, more than ever, that each today is not a gift for my unwrapping but the beauty is the gift I give.

Instead of anger I will give you honestly. Instead of bitterness I will give you wit. Instead of doubt I will give you hope. Instead of hate I will give you love.

 

Six is a magic number.

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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)

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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.

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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.

Holiday Cheer. Ra.

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I pitch my tent in the holiday happy camp (I am married to Mr. Xmas). I love decorated trees, holiday lights, festive music and the good cheer that really can be found within our fellow (wo)man.

I must admit that over the decades, I haven’t always been ho, ho, ho happy. Holiday magic  can be hard to embrace when you are alone or struggling with health issues. Or it simply brings up crappy childhood memories. Stress and anger used to override my joy quickly.

Now I try to pass on a little cheer where ever I go. Make someone laugh in a long line at the craft store, play a holiday song from my iPhone for the Fed Ex store employee who was ‘dying for a radio’ or just smiling at a stranger. I’ve received nothing but kindness in return.

Physically feeling good helps keep me joyous and I am very grateful. My every three-week Avastin drip has side effects that are manageable for me. Sinus pain/drip and some joint swelling/pain but not enough to keep me from a little yoga and walking.

Mr. Christmas and I are decking our halls and preparing the festivities. I hope all in my amazing village can embrace the good this year. I am holding you closer than ever before and still loving those I can no longer hug. Happy Everything!CIMG0270

Autumnal Bliss.

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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.

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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

Another sunny day.

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My CT scan results show ‘previous described hepatic lesions are no longer visualized. No suspicious osseous lesions.’ This means the chemo cocktail I’ve been on since April has done what it’s suppose to do and my oncologist has deemed me ‘in remission’. I have never heard these words before and let me tell you, it was music to my ears (I literally heard Jeff Buckley singing Hallelujah). I’ll take remission, thank you very much.

Given my reoccurrence and metastasis, my oncologist suggested I continue with Avastin (Bevacizumab) every three weeks. Since I like the idea of doing something instead of nothing, I’m signing up for this course of action. My life is joyous and I will do everything necessary for more days on this planet with the people I love.

I am hoping the Avastin will continue to give me minimal side effects as I return to work soon. Work stress seems laughable compared to fighting cancer so I got that going for me, which is nice. I do like having something ‘normal’ to do each day but I honestly know that work will always be work and that the time I spend outside of work is where I thrive.

From day one, I have been armed with love and healing energy from countless souls who pray, meditate, email and telepathically send messages of hope my way. No one could be more grateful for these acts beyond kindness. My heart is full, my soul enriched and my body is strong.

I have shared these words from an unknown (to me) cancer patient before but they are worth saying again… “Cancer may take my life but it will not take my day.” Hell yeah.

I'm sailing!