Relationship status: It’s Complicated.

Posted on May 29, 2017 by Carol Lacey

It was Friday morning before the Memorial Day weekend six years ago. I received a phone call that changed my life completely. I hung up the phone. Tears streaming down my face, my body shaking uncontrollably. In a barely audible voice I called Pete. “I have cancer.” Within a few hours, we were meeting a team of people who would come to play a significant role in my life.

I now had a gynecological oncology team. They drew up plans against the invasion of my body snatcher. Lying in recovery after my radical hysterectomy, Dr. Pisani tells me that one of the 15 lymph nodes they removed was cancerous.

Thus began my six year ‘cancership’. I have been in treatment or surgery more than not. I have experienced N.E.D., reoccurrences, metastasis and remissions. The good and bad, the ups and downs, the battles and the serenity. I embrace and celebrate each good: my N.E.D. status, my first remission and now my second remission. But instead of a cancerversary I have a cancership. And it is complicated.

You get a new vocabulary with cancer. Aside from medical terminology (squamous cell carcinoma, human papillomavirus, cervix, pelvic exenteration) you have words that you use to describe yourself: patient, survivor, thriver, fighter, avenger. You embrace the ones you are comfortable wearing and recoil at the ones you dislike. Friends, family and even strangers may place labels upon you as a way of trying to relate to something they have not experienced first-hand.

I choose my labels to comfort and honor me. They are mine. They fit who I’ve always been and who I am now.

My cancer is also an advocacy tool. I take every opportunity to share my cervical cancer story. I want to talk about my cancer and I want to show the world what cervical cancer looks like. No one dons their car dealerships, towns or football teams in teal & white for my cancer. In fact, it’s really up to Cervivors to be the poster women for change.

Let me be clear, I am not in love with my cancer nor do I remotely like my cancer. We occupy one body but we are radically different. I have no respect for this invasion and I will not let it dictate my life.

This post serves as my acknowledgement that six years ago this weekend, I had a shitty day.

“Then you will get to a place where you will just live in the world again together and that is when you know that you have beaten this.”

Caregiving: A love story.

Posted on November 7, 2016 by Carol Lacey

November is National Family Caregivers Month. My Cervivor sister Erica’s husband JR, wrote a beautiful blog post here. Love does conquer all but that doesn’t make it less challenging or painful for caregivers. I won’t pretend to know what it’s like for my caregiving team but my husband, my children, my parents, my brother and my village do more for me than they may ever know.

After my second surgery left me with no bladder or colon, my then fiancé became my nurse. In the hospital, he recorded the Wound Nurse demonstrating bag changes. Then at home,*he* changed my poop and pee bags for months. While I screamed in frustration trying to do it on my own, he just held me and reassured me that I could do it. And eventually I did.

Pete has also sat beside me and held my hand each time my oncologist told us of my reoccurrence and metastasis. We’ve cried together, and apart. It is exhausting and overwhelming for both of us and that’s why I’m so grateful for him.

My children, who each moment provide me with love, are who I fight so hard for. My children may be adults but that does not make this any easier. This caregiving thing wasn’t suppose to happen until I became very old. I want nothing more than to continue to be here with them.

My parents and my brother, along with my chosen village, constantly support me. They are there each time I am hospitalized, they take care of our pets when we cannot, they lend a shoulder to cry on, they summon prayer warriors in my name, they have raised an insane amount of awareness and dollars for causes I care about, they never miss an opportunity to celebrate with me and they love unconditionally.

These people, whose love touches my heart so deeply, are MY HEROES. This life would not be worth fighting for if they were not here. You give selflessly; you are my joy, my peace and my strength.

“When you go out into the world, watch for traffic, hold hands and stick together.”

A Girls’ Curls.

Posted on October 11, 2016 by Carol Lacey

Like many of us, I started out this life with very little hair. My mom likes to tell the story of my first Christmas where she had to tape a bow to my almost bald head. What that woman wouldn’t do to add the perfect accessory!

When my hair did come in, my mom made sure to keep it long, very long – despite my protests when she’d use an entire bottle of No More Tears when combing out said unruly mane.

It was my mother (and grandmother) who instilled the worth of a good salon cut in me. Even as a struggling single-mom, when it was time for my first big hairstyle change, we went to a salon. I remember feeling so glamours and grown up. I was in the fifth grade and decided that I wanted a shag cut. It was all the rage in 1975 and I wanted to be super cool. But instead of cool, there were lots of tears, mine and my mothers.

Once I started to see my hair as an accessory, it became fun. Aside from the shag and the Big Hair Experience of the 1980’s, I have loved my hair. I now have a personal relationship with my stylist (a dear friend) and going to the salon is still a glamours experience.

So, what’s a girl to do when she’s lost her hair to chemo for the second time? First, I reclaimed some control by shaving what remained. Now I sport hand-tied head scarves (that I’ve given tutorials on during my infusion sessions) or I just go Full Monty with really fabulous earrings.

But sometimes being a proud, bald woman is hard. Some people give me the look. My Friends With Cancer know the look I mean; that well-meaning yet sad look on their face with the ultimate question, “How are you (really) doing?”

My response to this question: Today is amazing but tomorrow may suck. Yes, I still have cancer. Yes, my cancer is incurable but the chemo I am subjecting myself to is helping to keep the tumors from growing and spreading.

Sometimes I miss my hair but I’m STILL HERE and that’s all that matters to me right now. Say it with me…bald is beautiful!

Up Your Nose…

Posted on March 16, 2016 by Carol Lacey

… With A Rubber Hose.

I spent five days in the hospital because apparently cancer is a real drama queen.

In the wee hours last Wednesday morning, Pete was trying to pry me off the bathroom floor as I clenched the porcelain goddess. My abdominal pain level and nausea were off the charts but thanks to Zofran I made the one-hour ride to the hospital barf-free.

The CT scan showed an intestinal blockage so they shoved a nasogastric tube THROUGH MY NOSE, down my throat and into my stomach. There it stayed for two days. Kids, don’t try this at home.

Why the blockage you ask? The theory is that with my pelvic surgeries (radical hysterectomy & exenteration), the Scar Tissue (That I Wish You Saw) from the radiation and my new tumor pushing things around down there, (shit) blockage happened.

I dislike being rushed to the hospital. It scares the people I love and it completely sucks. But during all of my hospital stays at El Camino’s 4B Cancer Unit, I received the most amazing care. The men and women who have chosen a caregiving profession here are some of the kindest.

Never has it been more apparent that I am living with cancer; a cancer that is no longer silent (“No one puts Baby in a corner!”). I have accepted that cancer has interrupted my so called normal life with things like lymphedema, doctor’s visits, blood draws, chemotherapy and managing ostomies.

I am living with cancer. Fact: Cancer looks and feels different on everybody. People tell me “you look so good” and “I’d never know you have cancer”. What do they think cancer should look like? I do a forehead slap to myself when these words come out of my own mouth. Perhaps it’s just human nature for some to want to say only kind things. I appreciate the kindness fer sur but please do not displace the struggles I, and all cancer patients and their caregivers face on a daily basis. If you don’t know what to say to us, a smile, a hug or “I care” speak volumes.

This is me on cancer, leaving the hospital.

In Stability.

Posted on December 18, 2015 by Carol Lacey

I had my second scan after 12 weeks on the Optdivo™ trial train. After we saw reduction in the small tumors and lymph nodes, I vowed this scan would be ground-braking.

What we found was that everything remained the same. No growing tumors. Nothing shrinking (we want shrinkage). I’m now labelled with ‘stable disease’… doesn’t this kinda sound like an oxymoron? Tumor stability isn’t bad cuz I’m a reoccurring, metastatic cancer patient — I just prefer N.E.D. (No Evidence of Disease) or what the media darlings call “cancer-free”.

This means I get to stay on the trial which is good because systemic treatment is good for lymph node ‘involvement’. I will check in with my radiation oncologist in January to see what other options I might have to fight this bastard. Because I fight. I fight hard.

Next week I start my vacation. I will enjoy the heck out of preparing for our upcoming holiday festivities. I will cuddle with my luvva by the fire. I will bake cookies and make Christmas cocktails. I will play tour guide to two of my favorite people. I will tell my village how much I love them (I love you!). I will hug my kids. I will be altogether living in the moment. Merry Everything and A Bright New Year!

HOPEology

Posted on April 6, 2015 by Carol Lacey

I like the word hope. Yes, it’s used to push many agendas and sometimes it can feel unauthentic. But if the cause/event/moment is something you are passionate about then hope feels right and true.

My six month MRI showed nothing… No Evidence of Disease (N.E.D.)! There is always a rush of tears that follows the news, good or bad; the build up of tension and then the overwhelming release. More times than not over the past four years, the outcome has not been what I’ve wanted to hear. My oncologist has a strong belief that Avastin (and I have to agree) is the reason for my clean scans.

The decision to return to a once a month “maintenance” treatment after a four month break, gave me pause. I owe my oncologist and Avastin (and the researchers/funding who pushed to test this on other cancers after it failed in breast cancer trials) a well-deserved ‘thank you very much’ — but staying with chemo, like some relationships, is complicated. There are the immediate side effects which can be icky and worse, debilitating, at times. Then, there’s the possibility of creating a secondary cancer or other serious health issues. It’s not a decision anyone takes lightly. The bottom line is that we do what we have to to stay on this planet, with the people we love, for as long as we can. I am hopeful. Being hopeful feels better than being hopeless.

Since I’m on the topic of hope, let’s talk about Relay For Life. My first experience at Relay was so positive that it became the topic of my first blog entry. It was an incredibly hopeful event for me, connecting with other survivors and honoring my loved ones. My family & friends have celebrated with me each year and we have crazy fun.

Each year the American Cancer Society chooses Heroes of Hope from across the country to be a voice of hope. So how honored was I to have been chosen this year?! I get to share my story at Relays all over California to build cancer awareness. Screen Shot 2015-04-05 at 12.44.40 PM

Opening a dialog about cancer, certainly below-the-belt cancers, hasn’t always been socially accepted. We can finally talk about breasts, prostates and colons without fear of hushed giggles. But chatting about anal, cervical or ovarian cancers still makes some people uncomfortable. And we know that when people fear something, they are not motivated to make change. But cancer is cancer and its sole purpose is to kill. It starts a ragging fight inside our bodies and we throw medicine down its throat hoping to choke it to death. The thing is, we do survive every damn day we are here. So, yes, hope it what motivates me; the hope that I will continue to be on this planet to love, cry, scream and just be.

“Let’s talk about cancer, baby. Let’s talk about you and me. Let’s talk about all the good things and the bad things that may be.”

What I Did This Summer (so far).

Posted on August 5, 2014 by Carol Lacey

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.

Once 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.

Posted on June 9, 2014 by Carol Lacey

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.

Posted on March 5, 2014 by Carol Lacey

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.”

The Scoop on Poop (and Pee)

Posted on February 6, 2014 by Carol Lacey

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.

cancer avenger

fighting for more sunny days

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