The Other Girls Club.

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.

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.

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.”

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A Girls’ Curls.

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!1965 – Version 2

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.

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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.

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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!

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Up Your Nose…

… 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.nu205004

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.

#canceravenger

This is me on cancer, leaving the hospital.

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.