Tag Archives: pelvic exenteration

Relationship status: It’s Complicated.

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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.”

Up Your Nose…

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… 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.

The Scoop on Poop (and Pee)

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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.