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48 Birthdays, 21 Post Cancer

Every year, as my birthday approaches, I go into reflection mode and start thinking about life. Life as it was. Life as it is. Life that almost wasn’t.

My life was forever altered by a diagnosis of cervical cancer at the age of 27. The days following the diagnosis were rough. Within a month of my diagnosis I landed in the hospital with shortness of breath and blood counts so low I needed my first blood transfusion. I spent exactly 30 days in the hospital, not sure if I was coming out alive. If you were around me at that time, you know how terrifying this period was, you know that my coming out of that hospital alive was nothing but a miracle (those were my pneumologist’s actual words). So here I am, celebrating #48 (or the 21st birthday I get to celebrate post diagnosis). 

Survival… Life after cancer… This is something that doesn’t happen to many of the women diagnosed with cervical cancer. Within the last year my Cervivor community lost 4 beautiful women in the prime of their lives as a consequence of cervical cancer. In the USA, where approximately 13,000 women are diagnosed with cancer in the last year, 4,200 women will die due to this cancer. Some people may look at these numbers and think they are small (I’ve been told that before); well let me tell you this: These numbers matter. These numbers matter to the women diagnosed with cancer, hoping they are on the right side of this statistics. These numbers matter to the families of the women who die each year, to the young children that will grow up without their mom… These numbers matter to those of us who survive this disease, because we know how close we cut it, how nerve wracking every follow up is, because the cancer may be gone, but the damage it did to our bodies is permanent (think of infertility, ostomies, lymphedema, neuropathy, bladder problems, just to mention a few). Most importantly, these numbers matter because we can change them. We can change the statistics because we have the means to prevent cervical cancer: The HPV vaccination is the #1 way to prevent cervical cancer. Plain and simple. A vaccine can prevent cervical cancer. I don’t think it can be any easier than that. 

We can literally protect our next generations from cancer-causing HPV strains by simply vaccinating our children (as early as 9yrs. old). It is an important vaccine because it would protect them from the high risk strains that are linked to cervical cancer (and cancer of the vulva, vagina, anus, penis, oropharyngeal (back of the throat). Cervical cancer will be like polio; gone, a thing of the past. I would love to see cervical cancer disappear and I believe that is possible with this vaccine. 

So each year, around this time, that sense of duty to those who did not make it demands that I tell you to vaccinate your children. That 27 yr. old Maria, terrified at hearing the news that would change her life forever demands that I tell you to vaccinate your children. It is imperative that you do because this is the one cancer we can basically eradicate. Every now and then I see these prayer chains pop up in social media asking you to share a prayer to find a cure for cancer; well, we now have a vaccination that can prevent a cancer and that is an answered prayer.

Celebrate my 48th birthday with me by scheduling your well-woman exam and vaccinating your children against HPV. Maria Franklin is a 20-year cervical cancer survivor who is also a part of Cervivor Leadership, and heads our Latina advocacy efforts. She was awarded our 2019 Cervivor Champion Award. Watch her story here.

A Call for Action & Education During National Hispanic Heritage Month

Did you know that Hispanic/Latina women have the highest incidence rate of cervical cancer in the U.S.? They undergo significantly fewer Pap tests than non-Hispanic white and black women and are less likely than women of other races/ethnicities to return for recommended follow-up after an abnormal Pap test.

These statistics from the American Cancer Society and Centers from Disease Control (CDC) are instructive to us at Cervivor to guide some of our educational efforts.

National Hispanic Heritage Month (celebrated Sept. 15 – Oct. 15 to correspond with the independence of many countries in Central America) honors Hispanic history, culture and contributions. Communities across the country mark the month with festivals and educational activities.

Educational activities? That sounds right up our alley as Cervivors!

Festivals? Preventing cervical cancer and saving lives feels like something to celebrate to me!

We want to halt cervical cancer in its tracks, in America and around the world. To do that most effectively, we need to be aware of the disparities in cervical cancer incidence and mortality among populations of women.

For example, in the U.S., black women (followed by Hispanic women) have the highest death rate from cervical cancer. Mortality (death) rates of cervical cancer among Hispanic women are 50 percent higher than those of non-Hispanic women, and incidence rates among Hispanics are twice the rates of non-Hispanic women. Different populations bear different burdens of this disease, for different reasons.
“I was diagnosed with Cervical Cancer stage IIB in 2008. I had not visited my GYN or had a Pap test for over 3 years. My mission now is to share my story to every woman especially Latinas, who are the most affected by this disease, and convey the message that my journey does not have to be theirs”. 
Patti Murillo-Casa

Data from the American Cancer Society show that Hispanic women are less likely to get regular Pap tests. Hispanic and Latino Americans amount to an estimated 17.8% of the total U.S. population, making up the largest ethnic minority. This makes it a focus for our educational messages about cervical cancer prevention with Pap testing, HPV testing and HPV vaccination. This makes it a focus for our advocacy, education and personal Cervivor stories. 

What can we do as Cervivors?

  • Familiarize yourself with Spanish-language educational resources and share them as part of your education and advocacy work. There is a downloadable Spanish-language “foto-novela” from the American Sexual Health Association, for example, fact sheets from the National Cancer Institute and cervical cancer screening patient information sheets from the American College of Obstetricians & Gynecologists. (These and many more Spanish language resources are available here.)


Join Cervivor Español: Private Facebook Group For Latina Cervical Cancer Patients & Survivors

  • Support local and national cancer control and prevention programs and policies aimed at decreasing disparities in cervical cancer mortality. For example: health reform efforts to reduce discriminatory practices against cancer patients and survivors (amen to that!); policies to include no-cost cervical cancer screenings and HPV vaccination as a mandated part of insurance coverage (hallelujah!), initiatives to expand HVP vaccination (yes!). 
  • Support the National Breast and Cervical Cancer Early Detection Program (NBCCEDP): The CDC’s NBCCEDP provides uninsured and underinsured women access to no-cost screening and diagnostic services, as well as a pathway to cancer treatment. Support federal and state funding for this program. Advocate for more funding to expand the reach of this lifesaving program. 
  • Share your story. We’d love to have more representation from Latina Cervivors on our site. Submit your story here and come to one of our Cervivor Schools to learn more about bringing education and advocacy to your community. 

Cervical cancer is preventable. Cervical cancer is colorblind. So are we at Cervivor. We are all bonded by this disease. We are all motivated to ensure that no one else has to go through what we’ve gone through. Let’s be aware of the racial disparities in cervical cancer, address them head on, and put our support, stories and voices behind programs that can change cervical cancer statistics and save lives. 

Let’s celebrate National Hispanic Heritage Month by recognizing the power and strength of the Latino community and to doing what we can to expand education about cervical cancer screening and prevention. 

Take Advantage of the Season of Giving to Build Up Cervivor

Use the “Season of Giving” to do some fundraising for Cervivor so we can keep up our good work. Did you know that about 25% of all annual giving in the U.S. occurs during the last three months of the year? We’ve all no doubt received the end-of-year appeals letters from local and national nonprofits. Our fundraising work may be smaller but is much more personal because of the stories are ours. The community is ours. Want to help fundraise but not sure how? Here are a few starting suggestions. Please reach out to us at info@cervivor.org and we can help you brainstorm and plan.

  • Donate yourself, then ask for a match. Donate to Cervivor and ask your employer to match. Post info about your donation on Facebook/Instagram, say why you gave and encourage your friends to match, with a link to our donation page.
  • Start a Facebook fundraiserFacebook’s fundraiser makes it easy to select a beneficiary (Cervivor!) and kick off a social media fundraising campaign. Share why Cervivor is important to you. Make a “Christmas with a Difference” or “All I Want for Christmas (or whatever holiday you celebrate) is for Cervical Cancer to be Eliminated” fundraiser. Let us know what creative ideas you have! Share a link and we’ll promote your fundraiser in our blog or newsletter.
  • Take advantage of Giving Tuesday by donating or asking others to donate: On the heels of “Black Friday” and “Cyber Monday,” Giving Tuesday (Dec. 3 – the Tuesday after Thanksgiving) is a global day of giving is fueled by the power of social media. It’s a great opportunity to donate to Cervivor and to help raise money for Cervivor. Last year we raised more than $10,000 for Cervivor on this one day. Help us keep up the momentum. Each donation helps us grow our outreach, activities and advocacy. 
  • If you’re shopping on Amazon for the holidays, sign up for Amazon Smile and select Cervivor as your charity of choice. We get a contribution from Amazon each time you shop, all year long, so you can feel even better about buying presents for your family…or yourself!
  • Host a Friendsgiving: Are you more an IRL (in real life) person than a social media person? Convene your friends for a “Cervivor Friendsgiving” meal. Share what you are grateful for. Share your Cervivor story and educate about prevention. Ask friends to donate to Cervivor, or to come to the dinner with $10, $20, $50 or whatever makes sense. Cervivor is about the power of community of women there to support each other – not so different from your own community of friends. Tie the two together. 

Thanksgiving kicks off the holiday season ahead. Big meals. Cooking. Shopping. Turkey Day. Christmas. Hanukkah. Kwanzaa. New Year’s Eve. All of this then leads to our favorite month of the year: Cervical Cancer Awareness Month in January – which rolls around when we are all barely coming up for air from the holidays. So now is the time to get started. We hope these holiday action steps for our community are helpful. We are so appreciative of your support.

Getting Real with Feelings

Since having cancer I have joined many support groups, both online and in person.  I have read and subscribed to many blogs.  One of the things that is great about reading people’s blogs on cancer and survivorship is how positive and inspirational people are.  However, this can be a blessing and curse. Sometimes the positivity lifts me up, gives me hope and strength.  And sometimes, it just makes me feel badly.  I feel angry at myself for not being as positive as these other cancer patients or survivors.  I feel like I should be more grateful, more positive, more fill-in-the-blank-with your own-happy-word.  And then, I get into this crazy cycle of feeling badly, and then feeling badly that I feel badly.  It’s tons of fun for everyone involved.

Going through cancer treatment and then being a survivor or living with cancer is a roller coaster.  For me, going through my initial treatment was rough.  I had laparoscopic surgery, then 6 rounds of chemo, 30 rounds of external radiation and 3 rounds of internal radiation.  I did my best to stay positive through it, but it was not easy.  And to be honest, most of the time I wasn’t very positive about what I was going through.  I felt sorry for myself.  I felt like it wasn’t fair, why me, what did I do to deserve this?  Then I would go to support groups or read blogs where people would talk about how having cancer had given them a greater appreciation for their life, their families, their friends.  Don’t get me wrong, I felt all of these things, but more often than not I just felt pissed off and exhausted.  I wanted to feel changed and inspired to advocate and see the blessings in the little things, and sometimes I did.  But quite often I didn’t.

It is hard to feel grateful when you are nauseous, exhausted, depleted, and in pain.  That is ok.  When I would go in to my cycle of feeling depressed and angry and then get mad at myself for not being more thankful that I would make it out of this alive, when I would start telling myself that I should be more grateful or more positive, my boyfriend would constantly tell me, “You are should-ing on yourself again.”  Going through cancer is hard enough, and the side effects both during and after treatment are draining (to put it mildly).  We should at least be able to give ourselves a break. 

I also felt like many people had it worse than I did.  I was lucky to have a supportive family that was close by and could help me at a moments notice.  I have friends and a boyfriend who have supported my unconditionally.  My cancer was treatable and I am expected to live a long and happy life.  Others that I know are not as fortunate.  So I should be more grateful (see, there I go again, “should-ing all over myself”).  But grief, sadness and anger isn’t reserved for only some.  If we took everyone who had a tragedy or illness in their life, and lined them up based on some ranking system of “who has it worst,” would only the last person in line be allowed to feel sorry for themselves and their plight in life?  That’s ridiculous.  Just because someone else has it worse than you do, doesn’t mean that your struggles are any less valid.  You can feel empathy and sympathy for those in other situations while still recognizing that your situation may be pretty crappy as well. (As a I write this, I am giving myself this advice, because I don’t always recognize this!).

Another fellow cervical cancer survivor told me recently that one of her mantras is “It’s ok to not be ok.”  This was amazing for me to hear and resonates so much with me, especially recently.  Whatever you are feeling, good or bad, it’s ok.  Allow yourself to cry, to yell, to be pissed or depressed.  Let those feelings come and allow yourself to truly feel them.  That is the only way to let them go and move on.  (Again, as I write this, I am thinking….wow, you should do this more often!).

People write inspirational and positive blogs to give others strength and hope, and to advocate for change, and all of that is useful and wonderful.  But sometimes it is nice to hear that people are struggling with the same crappy emotions that you are.  I have learned to look at blogs differently now.  I read them like Facebook posts.  Many of them are glimpses into the best of people’s lives and the best of their moments throughout the day.  Most people don’t post pictures of themselves in pain or crying in the fetal position on the floor.  They wait until those moments have passed and write about getting up and moving on and counting their blessings, and that is important.  But it is also important for us to know that we all have those moments of sheer frustration and anger and complete debilitating sadness over the hand we have been dealt, and that is ok too.  I want you to know that in those moments you are not alone.  There are, unfortunately, many others who are feeling the same way.  And maybe in some way that can bring you comfort.  You don’t always have to be positive.  It’s ok to not be ok.

Check out more about Ana’s story here:  https://cervivor.org/stories/ana/