Loving Support.

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.

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.

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

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.

The Art of Waiting.

Waiting to continue treatment (or not). Waiting for scan and doctor visits. I have spent the past few days in a ‘waiting pool’ of despair. Okay, despair is way too dramatic – I had some blue moments.

I have not always been at ease with waiting. At my worst, I was an impatient single mom rushing my kids here and there, forgetting that time means nothing to little ones. Patience was not my virtue and the unknown just frustrated me.

Then yesterday I was reminded that life is the living we do in between (cancer patient or not). The dash between our birth and death is where we live, and what we do in that time either feeds our soul or sucks us dry.

How I face each day has changed. I no longer rush myself or anyone else about; I no longer carry the weight of things I cannot change and I no longer speak harshly. I do appreciate my gifts (visits from my son/daughter, a sunset, my husband’s smile); I listen closer and I love with reckless abandon. I also wade in the shallow end of uncertainty from time to time, because we all do and that’s okay.

Most days I will focus on the chapters of my story and not the ending. Enjoying the humor, adventure, love and heroic feats of happiness.

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