The Other Girls Club.

Posted on January 29, 2018 by Carol Lacey

I don’t think of cancer as a blessing and I don’t thank cancer for anything. I will however, thank Cervivor.

Cervivor came into my life when I was needing a connection to others like myself and searching for a way to give my cancer story a purpose. Cervical cancer is still not talked about enough so there is something incredibly powerful about meeting women who want to change the world’s view of our ‘down there’ cancer. Cervivors proudly wear teal & white as we share our newfound knowledge about cervical cancer and HPV. We want to change perceptions, change state policies and show the importance of making cervical cancer research a top priority.

Before Cervivor, I had no idea January was Cervical Cancer Awareness Month (CCAM). Now I think about the 13,000 women in the U.S. alone who will be diagnosed with cervical cancer this year. These are women from all walks of life, women who may have different beliefs and hardships but we are now part of a ‘club’ – one that’s all about our vajayjays, our coochies and not about our boobies. We’re a ‘below-the-belt’ cancer that was once the most common cancer death in American women. But we now have the Pap test that looks for abnormal cells on your cervix and the HPV test that looks for high-risk HPV that can cause abnormal cells. Keeping on schedule with these tests and having your annual well-woman exam has decreased cervical cancer death rates.

However, I also think about the 4,000 women who will still die from this disease this year. They will die too soon. Some will die fighting to make a difference. I am angry that we have to fight so hard and I am tired of watching strong women suffer. But what keeps me motivated is knowing that the next generation, my two young, fierce nieces will never have to hear the words “you have cervical cancer”. They will be two less. Future generations of girls will no longer have to face losing their fertility, having organs removed from their bodies or having to endure radiation and chemotherapy. We can prevent HPV related cancers. Think about it, we have prevented diseases like polio and small pox over the past decades, and in my lifetime we now have a cancer prevention vaccine.

As CCAM comes to an end, I will continue to share my Cervivor sister’s stories, along with my own, in the hopes that people will understand this disease better and be motivated to prevent it. I will be the change. I will make my story count and I will live my life with purpose.

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!

(Life) cha-cha-changes.

Posted on May 25, 2016 by Carol Lacey

First, I was invited to participate in Cervivor’s Stirrup Stories: A Narrative Beyond the Speculum. Tamika Felder is the heart of Cervivor, a non-profit who’s mission is to educate, advocate and bring cervivor sisters together for support and love.

It can be difficult to open yourself up to the world, share intimate details of your life with complete strangers. Clearly, I’m okay with it because I write this blog. But it is still scary. People can be hurtful and unkind. But at the Stirrup Stories event in D.C., all fears subsided the moment I heard the first of thirteen other women share her story. That night, I was moved to tears and laughter, and love. Each story was a woman showing us that we are not alone – that taking control of our bodies is important. The world feels less scary and hope feels obtainable when you surround yourself with love and compassion. That night, I had the added benefit of my BFF sharing this moment with me. How wonderful was that?!

I am deeply grateful to Tamika and all the beautiful Cervivor sisters I had met. They are forever in my heart. 13248496_640762232740773_1188351187142129509_o

Secondly, this month I learned a new phrase: “salvage chemotherapy“. Kinda clinical and harsh sounding I know.

My oncologist and I, who I have had a close relationship with for the past five years, decided we should ‘remove our rose-colored glasses’ (as I put it). Due to the progression of my tumors while on the Opdivo trial, treatment with that drug ended. I have started back on Taxol and Carboplatin — which we hope will shrink the tumors that may be causing intestinal blockage. There is no curative treatment at this time. The salvage chemo option *is* my option.

I have been living on and occasionally off my cancer for five years. And yes, I call it my battle. But the key word is ‘living’. I live my life my way; my ‘bucket list’ is simple: spend as much time as I can with my family/village and embrace the little things that make me smile.

I think my Great-Aunt Anna used the ‘more sunny days’ saying as a way to avoid telling her age, but it has become my daily mantra. I no longer count my years but only count my sunny days. In my case, a sunny day doesn’t have to be void of clouds or rain, just void of keeping me down forever.

“It doesn’t interest me what planets are squaring your moon. I want to know if you have touched the center of your own sorrow, if you have been opened by life’s betrayals or have become shriveled and closed from fear of further pain! I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it, or fix it.”

“I want to know if you can be with joy, mine or your own, if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, to be realistic, to remember the limitations of being human.” ~ Oriah Mountain Dreamer

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!

Trials and Tribulations

Posted on August 17, 2015 by Carol Lacey

Avastin and I broke up. We had a good ride but our ideas on a long-term relationship differed. Cancer was the bitch that got between us.

I’ve had nausea and dizziness for the past few weeks so I saw my general doc, my eye doc and had a brain scan. Brain is good and it’s not vertigo so let’s do a full PET scan! Low and behold, there are three masses, all about 1.5 to 2.0 cm and one pushing against my pancreas and bowel, giving me that lovely ‘morning sickness’ feeling and other unpleasantries.

There we were again talking about new options with my oncology team. I am very thankful for options but this sucks! My oncologist and radiologist were both very excited about a clinical trial for Nivolumab. She sounds pretty badass… a human programmed death receptor-1 blocking antibody. Nivolumab and I are going to get close, every two weeks close for 46 doses. I’ll get scans every eight weeks and if improvement isn’t seen, then I’ll jump on some targeted radiation. 22 of us will be in the study and since this is a second tiered trial, we all get the drug for free in the name of science. The side effects are very similar to Avastin, minus the chance of heart failure – so I got that going for me, which is nice.

And because life continues to move forward, we made two *huge* changes: we bought our dream home and sold a well-loved home. Selling a home is stressful but it actually became comical in our household. Picture two grown ups running around before an open house, hiding cat boxes, ‘staging’ rooms with the ‘good rugs’, shoving FOUR CATS into individual carriers (don’t forget the DOG!) and either driving around or drinking wine on our friend’s patio while the dogs circle the caged cats. I never want to sell a house again. I’m staying in this one forever… good thing I love it.

Life seems to be a series of good and bad. I keep thinking about a secondhand saying another cancer fighter said, “cancer may take my life, but it will not take my day”. Most days, cancer doesn’t exist in my world and other days the only thing that gets me through is my hatred for cancer. I love my sunny days, even the days I scream obscenities at the universe. Hope is still a household word that I find a great deal of comfort in. Each day I am hopeful, grateful, thankful and just full.

On the topic of feeling full (of love), as an American Cancer Society Hero of Hope, I had the great honor of sharing my story at several Relay For Life’s throughout the Bay Area this summer. Here’s me at the Relay For Life of Marnia — they were such a welcoming group. I tear-up with admiration every time I speak to Relayers, fighters. We all hate cancer and collectively we become a force for good.

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.”

Blazing Trails (and other metaphors).

Posted on November 26, 2014 by Carol Lacey

Avastin and I have been BFF’s for a year and we started our second year together last month. My oncologist has no other patients in a long-term relationship with this drug. He says I’m a trail blazer. Not really how envisioned myself blazing trails but it’s nice to know I’m providing research in the name of science.

For the past four months, we have been monitoring my protein because it’s creeping into my urine. My kidney plumbing is confused. I say ‘plumbing’ because my creatinine level is still good.

24-hour urine collections are fun because you get a huge orange biohazard jug that you keep in the refrigerator during the collection period. As comical as I thought it would be for my co-workers to panic about ‘what the hell is in the refrigerator’, I did not conduct my collections at work.

All three urinalysis showed an increase so my husband and I sat with my oncologist last week. Another metaphor my doctor used was ‘a rock and a hard place’ and I threw in ‘lesser of two evils’ (I thought it was some kind of metaphor throw down ). Since we are in ‘uncharted territory’, the lesser evil I chose was to take a break from my treatments. There were scary words spoken like nephrologist, kidney biopsy and dialysis. That’s when I want to stick my fingers in my ears and just ‘lalalalalalala’. So in a few months we’ll check my level and see how things have improved (I’m a glass-half-full girl).

I have to say that my body feels completely amazing. My joint pain, swelling and blood pressure have already gone down. I feel stronger than I have in a long time. I am thankful to have my body back.

Speaking of thankfulness, tomorrow is traditionally when we gather to celebrate the harvest bounty and reflect upon what we are thankful for. One day of reflection is not enough for me. Every day I am thankful that my life is full of loving friends and family. Every day I am thankful that my children are safe, happy, compassionate beings. Every day I am thankful to the man whom I share my highest highs and lowest lows with. Every day I am thankful. I am sending good vibes out through the universe; may they bounce into your heart.

a fence in my neighborhood

cancer avenger

fighting for more sunny days