Stirrup Stories Recap

By Cervivor Ambassador Curtissa Clay

A few weeks ago, I had the opportunity to fly to Washington, D.C. and attend “Stirrup Stories:  Narratives Beyond the Speculum.”

Stirrup Stories logo

It was a celebration of Cervivor’s 10+ years of cervical cancer advocacy that included a benefit performance, reception and dinner.  It was an amazing night where cervical cancer survivors from all over the country shared their stories.  It was an event that I could have never imagined when I was first diagnosed with cervical cancer in 2013.  That night, we laughed.  We cried.  We cheered…

When I was diagnosed with cervical cancer and told that I needed chemotherapy and radiation, I needed three things- I needed to know that I was not alone.  I needed strength to go through treatment. Most importantly, I needed hope. I believe that Stirrup Stories gave the women all that and more.

As soon as I walked into the event, I felt the excitement in the air.  There was good music flowing.  Signature teal drinks were

With my new friend Brandi
With my new friend Brandi

being served. Hors’d oeuvres were being passed. There were lots of bright smiles.  Many women were dressed in their beautiful cocktail attire.  Oh, and there were some well-dressed men there to support the cause as well.   The building was full of great energy.

As the evening officially started, we were welcomed by Michel Wright of Majic 102.3 and introduced to Tamika Felder, the founder of Cervivor.   We were also introduced to Sarah Fraser, a long-time supporter of Cervivor’s work.  Then, the meat of the evening began.  Cervivor’s began to share their stories.  These women talked about it all with no holds barred.

Here is just a taste of what we heard from these amazing women: 

Vanessa talked about being told that she had pre-cancerous cells, yet she only heard the word CANCER!  It took persistence over the course of 5 years to ensure that her pre-cancerous cell never became cancer. She is what Cervivor is fighting for.

Christine recalled getting an unexpected call, because her doctor found SOMETHING.  She was busy being a rock star and living life when she was diagnosed with cervical cancer. Her and her husband were planning to have a family, but she lost her fertility due to treatment and her husband left.  It was tough and depressing, but her story didn’t end there.  She has become a huge advocate in the fight against cervical cancer.  She puts on concerts to raise money and spread awareness.

Lori recalled the moment that her cervix became a new, uncharted episode of Star Trek.  And Star Trek episodes always end in resolution, right?  Lori will celebrate 9 years cancer free this month.  She said that it was time to win this war against mutant, alien cancer cells.

We heard from Carol, a woman who is currently living with cancer.  She hopes that one day there will be more treatment options for her.  In the meantime, she has decided not to count the years, but to count her sunny days.

Emily introduced us to her partner, the speculum.  Yes, she whipped one out, right on stage. She always kept her annual appointment with the speculum.   However, she didn’t realize how vital her annual date was until her results came back abnormal and she had to have surgery.  Today, she knows why she shows up each year and she wants others to be informed as well.

We also heard from Heather who shared a letter to her daughter.  One of her biggest fears was that she would die and her daughter, Lily, would not remember her.  Yet, it’s been 9 years since she fought and beat cancer.  She wants her Lily know everything that she needs to know to be empowered when it comes to her health.  She also wants Lily to know how her cancer, her survivorship and advocacy work have become an important part of who her mom is.

We also heard from Catherine, who, through spoken word, shared how she beat cancer as a young mother and college student years before there was Google or Gardasil.

Then, we heard from Joan who lost her daughter, Iona, to this disease last year.  As a nurse, she wanted to save her daughter, but her hands were tied. Joan doesn’t want anyone else to go through the pain of losing a daughter.  She wants to spread awareness.  She urged everyone to get their annual exams, to do it for their loved ones, to do it for Iona.

Erica talked about time.  She is living with cancer and choosing quality of life over quantity.  Her biggest fear is not dying; it’s what she would leave behind when it comes to her husband and her son.  Her son’s biological father would hold all the cards.  Her husband and son could lose her and each other. Though there is a lot of uncertainty, she has chosen to defeat cancer by how she lives her life.

Alegra shared a narrative about the painful reality of losing her fertility due to cervical cancer. She is passionate about cervical cancer advocacy and teaching other what she knows.  She believes that no one deserves to die of cervical cancer, but everyone deserves a crown.

Pam shared a poem where she talked about the life of a survivor- the countless appointment, surgeries, scans and the anxiety.  “…We have a way to keep HPV and this cancer at bay, So why are there still so many women dying today.  Educate the community, your family, your friends.  That is the only way that this cancer will end…”

unspecified-77We also heard from Dr. Mildred Chernofsky.  She shared how we’ve entered a very hopeful time for cervical cancer, because we have a chance to eradicate it.  She asked us to honor all the women sharing their stories by going to our appointments, getting the vaccinations and getting screened.

We also had the honor of hearing from the lovely Traci Braxton of WE TV’s Braxton Family Values.  Traci has family unspecified-31members who have been touched by cervical cancer.  And when she found out that she had abnormal cells on her cervix, she decided to take charge of her health.  She encouraged the audience to get the HPV vaccine (Read guidelines here), get the Pap test and get the HPV test.

We also had the opportunity to honor the family of Henrietta Lacks. In case you haven’t heard of Henrietta, she was the unwitting donor of healthy and cancerous cells that were biopsied during her treatment for cervical cancer in 1951 at John Hopkins Hospital.  Her cells have led to significant medical advances. You may read more here.

Then, there was Keke Wyatt!  She wrapped up the evening with a soulful performance. unspecified-138

It was an impactful and informative evening where the audience became truly engaged.  I heard that some guests were starting up their own health discussions at their tables.  In some cases, they were sharing very personal information too.  One woman at my table shared that she was shocked to learn that she needed to ask for and HPV test in addition to the Pap test.  She said that she was going to ask her doctor about getting the HPV test.

Curtissa Selfie at SSThough I did not share my story on stage that evening, everyone has a story and everyone can have a voice in this fight against cervical cancer.  Once I became associated with Cervivor and attended Cervivor School last fall, I became  empowered.  I started to share my story with anyone willing to listen. Women are making doctor’s appointments, because of what I’ve shared.  The hope is that the stories shared that night will be far reaching and lead to more action and more saved lives.

Again, we laughed.  We cried.  We cheered… Because these women shared their journey, shared their strength and gave us hope.

May is Oncology Nursing Month

0001-248541207By Antoinette Lipani Solnik, RN, BSN, Gynecologic Oncology Nurse Navigator

When you’re a nurse, you know that every day you will touch a life or a life will touch yours – Unknown

In honor of oncology nurses appreciation month, I wanted to first thank all of the nurses who might be reading this blog. THANK YOU for your service to a very special and unique patient population.  Our oncology nurses are truly the mainstay of the hospital and gynecologic practice I work in.  We touch peoples lives everyday and more times than not, that care comes with a “thank-you” from our patients. I can’t tell you how good that makes a nurse feel to hear those two words – it goes a long way!

I would like to share my own story of how I arrived in this role as a gynecologic oncology nurse navigator because I am so grateful to be doing what I am doing today.  As  nurse navigators we are that critical link to patients, families, physicians and  resources. We are able to expedite a treatment trajectory and bolster our physician’s already amazing work. Navigators are part of an amazing team that helps a patient sift through the quagmire of a daunting cancer diagnosis. 

I work with two amazing gynecologic oncologists at Sibley Hospital in Washington, DC  – Drs. Jeffrey Lin and Mildred Chernofsky. I have been with them a little more than two years now and have learned so much in this short time about gynecologic diseases.

With about 95,000 new cases of gynecologic cancers diagnosed each year in the US, I stand with these two physicians, approximately 1,000 other gynecologic oncologists and many more nurses  at the intersection of maternal health, human rights for women, surgical burden of disease, screening and management and long term consequences of cancer and cancer treatment.  It’s incredible to be a part of all of this! We have done so much and yet there is still so much we have yet to do!

As I mentioned, I am relatively new to nurse navigation, having come from a critical care background and before that, in healthcare marketing of all things.   I say this, because as I come to know more nurse navigators I find it most interesting, the vastly different kinds of experience we bring into our practices. 

Nursing was always my calling as I am the daughter of a nurse and always wanted to be one.  I was steered away from nursing as a career though when I was 18, as I was told nurses really didn’t have the voice they needed to have (unlike today where we are an integral part of the care team).  So, out of college I went into healthcare communications and started working for a Manhattan healthcare PR firm.   Fast forward this story 18 years to me at 36, married with two kids and now attending a lunch with a lively bunch of octogenarians, that my life as I knew it changed. 

I’d sat next to a woman named Sylvia and it was fate that I told her that I was contemplating a career change.  Jokingly I said things like, “I’ll surely be the oldest person in my class. By the time I graduate I’ll be 40!” and “how on earth am I going to pull this off with 3 and 5 year boys?”  She then shared her own story about earning her MBA at 50 (which back then was very bold).  She finished looking me straight in the eye and said, “You know Antoinette, you can either be a nurse when you turn 40 or not…it’s really up to YOU!”   It was like this woman had thrown he gauntlet down to pave the way for my destiny. I decided to go for it and took one science class at a time until I’d gotten all of my requirements completed and applied to Georgetown University two years later.  The rest is history!

I started in critical care with a passion for cardiology but 5 years later was getting a little burned out and called up a dear friend who also happens to be a nurse recruiter at Sibley to bounce some ideas off of. After listening to me a while explain what I loved about nursing – the advocacy, the education, getting to spend longer periods of time with patients, she said, “Let me tell you about a new opportunity that’s opened at Sibley called nurse navigation.  Our roles as nurse navigators are so critical to the improved outcomes for patients and our experience with other nurses, physicians, “the healthcare system” in total is critical to achieving these outcomes.

Many times, I attend that initial appointment with Dr. Chernofsky –  when a patient first gets their gynecologic cancer diagnosis.  We nurses must always remember, what patients have going through their heads and pretty much only that is “I have cancer”.  It is a pretty rewarding feeling to know that when the physician leaves, I can listen to the patient,  help them process the information given, answer some questions, then help start the process of scheduling the multitude of appointments that lie ahead of them.

Sitting down with a patient to show how a mediport is placed and its function or how a CT scan works and why it’s needed over a PET scan helps a patient feel in control over the cancer they have very little control over.   Control is something we all desire and it is especially so with a cancer diagnosis.  I often tell our patients, we just need to worry about the things that are within our reach of control and turn that which we have no control over to God. And, in the meantime, let’s get organized and meet this thing head on.

I love what I do as a nurse.  I thank Sylvia for her inspiration. I thank my patients each day for theirs.  If you around a nurse this week, thank them.  It means a great deal.