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.

Holiday Cheer. Ra.

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.

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

Another sunny day.

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!

Cancer and the Internet

The Internet can be a scary place… Miley Cyrus discussions, beauty pageant contestants and cancer statistics.

HADROSAURUSCancer has been on this planet a long time. Early cancer descriptions were found on Egyptian papyrus and Hippocrates, “father of medicine”, has been credited with recognizing the difference between benign and malignant tumors. And one family of dinosaurs, the Hadrosaurus (a duck-billed herbivore cousin of T-Rex), had cancer.

But what does the Internet have to say about *my* cancer – cervical cancer:

  • The National Cancer Institute shows that in 2013, there were 12,340 new cases of cervical cancer and 4,030 deaths.
  • Cervical cancer tends to occur in midlife.
  • The American Cancer Society says that cervical cancer was once one of the most common causes of cancer deaths for American women but because of advancements in the Pap test, there was a 70% decline in deaths between 1955 and 1992. (What about the years after 1992??)

I am a huge advocate for gaining knowledge and the Internet can be a great tool. However, for a newly diagnosed cancer patient, it brought me fear and anxiety.

None of the information on the Internet has made my cancer disappear and none of it has made it stay. After living with cancer for two years, I focus my Internet searches to cancer blogs, You Tube videos on applying eyebrows and general cancer support in my area. And yes, cute animal videos and heart-warming stories of human kindness.