cervical cancer

It’s time to stop leaving women behind when it comes to cervical cancer screening – USA Today

March has been a crazy busy month for Cervivor and for the visibility of cervical cancer prevention. An international awareness day! An editorial in a national newspaper! A piece of legislation introduced in Congress! As the month draws to a close, here is a recap:

An International Awareness Day

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The month kicked off with International HPV Awareness Day on March 4. The day featured online events, press conferences, webinars and more taking place around the world.

The awareness day may have come and gone, but the International Papillomavirus Society, the official sponsors of the day, have terrific posters and visuals you can download and share at any time. Their graphics can be be a great addition to your social media feeds!

An Editorial in a National Newspaper: USA Today

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Also in March, USA Today featured an editorial on the importance of cervical cancer prevention co-authored by Cervivor founder Tamika Felder and Anna Giuliano, Ph.D., the founding director of the Center for Immunization and Infection Research In Cancer at Moffitt Cancer Center. The editorial highlighted the need for more proactive screening in uninsured/underserved communities and expressed frustration at the lowering of cervical cancer screening goals in the recently-released “Healthy People 2030” national public health initiative. The editorial offered a strong call to action: 

“Decades of groundbreaking research have provided the tools to eliminate cervical cancer. Yet, every two hours a woman in the U.S. dies of this preventable cancer. It is time to stop leaving women behind and work collectively to get every woman, regardless of race, ethnicity, and socioeconomic status, up to date with cervical cancer screening. Let’s create a national goal to achieve cervical cancer elimination, a strategy for the U.S. to accomplish this goal and a revision of the Healthy People 2030 objectives.”

Share the article on your social media feeds. Make sure to highlight your personal passion for this issue and your involvement with Cervivor!

Legislation Introduced in Congress

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The “Promoting Resources to Expand Vaccination, Education and New Treatments for HPV (PREVENT HPV) Cancers Act”  was introduced in Congress in March.  Cervivor was quoted in the press release announcing the bill. This legislation would, if enacted in the future, address many of the education and health equity needs surrounding cervical cancer prevention.

Our voices and our stories and our advocacy will be important to move this bill forward. The introduction of a piece of legislation is only the start of a long chain of legislative steps that can ultimately lead to bill passage (or not). Bill passage can take years. Bills can get folded into other legislation. Bills can get debated by committee but never elevated to the House or Senate floor for a vote. In this case, the bill was sent to the U.S. House Energy and Commerce Committee, but so far, there is no companion measure over in the U.S. Senate. So there is a long road ahead… 

On the other hand, the introduction of a bill is itself a win! It means that members of Congress and their staff are paying attention to this issue, and Congressional attention can translate to media attention and enhanced media coverage. It means that there will be future conversations as the Congressional sponsors seek other co-signers and supporters. We at Cervivor, are in it for the long haul, advocating and  sharing our stories.

Walk a Mile in My Shoes

To me this is a no-brainer: when a person has a chronic medical condition that they manage every single day, it does NOT mean they are supposed to stay in bed for the rest of their lives. At the same time, it also doesn’t mean they should extend themselves to the point that they are just making their condition worse by pushing thru pain to be “tough” or “brave.”  Some conditions will get progressively worse if you don’t adjust your lifestyle and take preventative measures.

I speak from experience. I have lymphedema in both of my lower extremities. Most recently, I have been battling what we think is neuropathy. The latter is much more painful to me than the lymphedema, but I’m not even sure what is what when it comes to the pain. All I know is that it hurts terribly.

I enjoy walking. That is one of my favorite stress relievers and a way that I stay physically fit. Gaining weight is very bad for my lymphedema so I try to stay moving, even if they are short now because of pain. Still, I do many things to keep myself smiling and positive because if you don’t have your mental health at the end of the day, what do you have?

Anyone that battles lymphedema or neuropathy knows it is a constant balance between sitting and standing. When I’m having a “bad day” my medical paperwork says I’m supposed to only work for four hours a day, three days a week. If I’m having a “really bad flare up,” I am supposed to keep my legs elevated all day. We all know that’s not feasible when you are trying to work every day and show up for your employer. It’s very stressful constantly trying to play catch-up and run out the door for another doctor’s appointment.

Someone made a comment to me the other day that really hurt my feelings (I cried). In short, they questioned how I could be out and about and yet still be so “sick.”  I have since processed it, and I realize that anyone that questions my pause from teaching does not know my struggles or my story. They do not know medically what is going on with me. For them to assume that I am “supposed to” stay in bed and not go on a walk or do anything fun, well that would also be detrimental to my mental health.

They are not in my shoes. They probably couldn’t even find my shoes on the shelf. If they could, they would know this:

I am constantly worried that I might have an accident because that’s what now happens sometimes because of the radiation to my bowels. It is very common among women like me who have withstood grueling treatments for cervical cancer. It’s a nasty side effect. God Bless Imodium!  Fellow Cervivors and I jokingly say that we need our own diaper bags. We can laugh about things such as bodily functions, but it doesn’t mean it’s fun or funny. It never goes away. We are just lucky to have a sense of humor about it because at the end of the day, what else can we do?

When you ask me to go boating or out to dinner, I worry that I will ruin the fun because my feet/legs will hurt and I won’t be able to even focus on the conversations around me. The pain can make me nauseous and I feel like I want to throw up. Sometimes my eyes will randomly tear up just because I’m so tired of the gig. But the gig is my life so I can’t take a vacation from myself.

When I’m trying to get to work on time, I may seem frazzled when I arrive, It’s not because I’m not trying my best. Some mornings the thought of standing hurts before I even get out of bed because I know what it’s going to feel like when I do. Sometimes I’m changing my clothes at the last minute because I had an accident as I was walking out the door. Such fun! At any random time that you are with me, I’m probably fantasizing about taking a hot bath. There’s something about chronic pain, stress, and physical exhaustion. Bad recipe.

Before you judge me (or anyone!) and try to critique me based on your idea of what a “sick person” does with their lives, try to put yourself in my shoes. You truly don’t know, unless you have lived it. Take a walk with me and let’s see what happens!  Remember, you don’t know my reality until you have actually walked a mile or two with me or next to me. This post isn’t just for my own situation, but it’s for all of us cervical cancer survivors and those with chronic pain or chronic illness who have dealt with the judgement of others.

I’m posting about this, because I’m trying to create awareness and empathy. People are beating cancer much more than they did decades ago. Yet with surviving comes long-term side effects that sometimes become progressively worse with time. Our bodies know the score. When discussing taking a break from work, a coworker said to me, “your body already made the decision for you.” She’s right. It did. And I had to take something off my plate so I could feel better physically/emotionally. I’m taking a knee right now for myself. And no, I will not be staying home in bed in a dark hole every moment of my life. I will keep on living and enjoying this life that I have fought so hard to enjoy. I am a real person and this is my life. Thank you if you are someone that understands. I love you. If you are part of my amazing tribe and you don’t feel you understand, please just ask in a supportive and loving way.

Shawna Christy, 46, was diagnosed with cervical cancer in 2005. Treatment included removal of her cervix, uterus, 1/3 of her vagina and more. Though surgery and radiation helped her beat cancer, “the hard parts came later” – like chronic pain together with PTSD and the emotional, hormonal and spiritual challenges of being a cancer survivor. Shawna plugged into Cervivor for community and support. In 2016 she attended Cervivor School and became a Cervivor Ambassador who uses her voice and her experiences to open conversations and “change the narrative.” She lives in Ottumwa, is a proud mother of daughter (Korynn, 18) and son (Kyler, 16). She is grateful for time with her besties and husband, Allen. This year she is taking time off from teaching first grade to focus on her health to better manage her pain.

Read Shawna’s Cervivor Story or her previous blog “Cerviving with Lymphedema”

See other Cervivor blog posts about lymphedema: “My Under Armor: Do you know about lymphedema?” by Heather Banks