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/

18.

18 years cancer free. I type those words and I feel so many emotions. I do not take lightly the magnitude of surviving 6,574 days beyond cancer.

Wow.

My eyes well with tears as I now say that aloud. I am grateful. I’m blessed. I’m lucky. I am honored. I am happy. I’m sad. Sad? I’m Angry. Angry? Yes, because there is a part of my heart that also aches for those that don’t get the opportunity to reach a milestone, such as this. It’s what’s commonly known as, “survivor guilt.” The guilt of “having made it.” But with cancer you’re always looking over your shoulder and are always just a cancer cell or more away from “what ifs.” I remember the enormous cloud of anxiety (and fear) that came with reaching one-year cancer free, and then five. Last year I had a scare. I didn’t know if I would still be cancer free for year number 18 but I am, and I am grateful. I’m also honored as I know that every single day, month and year matters. It’s an honor and a privilege to be 18 years cancer free.

I learned some time ago that I had to honor this time — not just this year, but every single day.  And I do that in various ways. First and foremost, I do that by the way that I live my life. I live my life as if tomorrow is not promised. I live my life by enjoying my imperfectly perfect life. I live my life by giving thanks for what I do have and try hard to not worry about what I do not. I wrote an entire book about it. If cancer taught me anything it is to be grateful for life and I seriously find joy in living my best life beyond cancer. Cancer does not hold me hostage anymore. 

I give back to the cancer community in many ways, but the biggest way is the nonprofit that I founded and lead, Cervivor. That work continues to inspire, empower and remind me that I am alive. It can be bittersweet, because while I honor this life beyond cancer, working in this space triggers past traumas of an emotionally and physically difficult time in my life. I’m also surrounded by women who are sick and who sometimes don’t survive this disease. That is probably the most painful part of this work. But, it has also become that catalyst of why I can’t abandon this work. Women still die of cervical cancer despite all the advancements that have been made. While we can prevent cancer in future generations we need more help for women who endure recurrent and metastatic cervical cancer today. I believe that we will make that happen. 

When I first became a patient advocate, I didn’t know that it would look like it currently does today. I didn’t set out to become a patient advocate. It was exactly the opposite. I wanted to forget cancer and pick up right where cancer had come in and halted my life. But the harder that I tried to do just that; the more difficult it was to bury it while trying to navigate my “new normal”. I just couldn’t do it. I couldn’t reconcile how this thing had happened to me. How would I move forward with life. How do you live with the constant cloud of cancer hanging over you? I did decide to do something with “it” and “it” was to start sharing my story. I remember feeling that my story wasn’t as dire as some, and that compared to others it seemed that I had it “easier.” Why would anyone want to hear my story?  AND who would want to hear about cervical cancer and me talking about my “coochie” 🙂  But there was this feeling deep from within that I just had to do it. I had no idea what I was doing, but I learned just by doing something day by day and looking to others who could mentor me. Being a patient advocate isn’t a cookie cutter thing. There isn’t a one way fits all type of advocacy. Being a patient advocate is about being committed to a cause. It’s being vocal. My cause is to end cervical cancer. And with each year of survivorship that has become  even more personal than I could have ever imagined. I never thought that I would see myself here. But I am and I promise to make my survivorship count

My goal has always been to connect and mobilize as many cervical cancer patients and survivors; as possible. Over the last decade it has also been to get those women (and their networks) engaged in active advocacy. The past 18 years, I’ve met some incredibly dedicated women and more recently we’ve lost a few that not only hurts personally, but also comes at a great loss to the cervical cancer movement. 

That is what makes this cancerversary bittersweet. I want to yell from the rooftops that I AM 18 YEARS CANCER FREE (and I will), but I’m also sad to not be able to do the same with women like Jillian Scalfani, Lisa Moore, Brittaini Qadri, Lizzi Haas, Erica Frazier Stum and Laura Brennan. These losses hurt not only because of the loss of life, but because of the loss of champions for our cause. These women were giants. I miss them terribly. These women got it — in a big way. They were loud, vocal, passionate hadvocates. They understood the enormity of what we’re up against and the power of our collective voices to overcome it. I miss their willingness to be “all in.” I’ll continue to share their stories. Their voices will be heard.

This day will be about celebrating and a reminder that I am still here, but it is also a reminder at who is not. It’s bittersweet. But I’m focusing on the words of my friend, Dr. Sabrina Mikan, “Life is incredible! I appreciate each day I receive.” 

Amen.  

Tamika Felder is an 18-year cervical cancer survivor and award-winning women’s health advocate. She is the Chief Visionary at Cervivor – a nonprofit dedicated to cervical cancer advocacy and support. Named a “Cancer Rebel” by Newsweek in a 2017 cover story, Tamika is a highly sought-after speaker on cervical cancer advocacy, cancer prevention, HPV education, and living life with purpose after cancer. She is the author of “Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.” Tamika currently serves on the steering committee of the National HPV Vaccination Roundtable. She’s also shared her story and experiences on Presidential Cancer Panels convened by the White House. An award-winning television producer, Tamika is currently filming a documentary about cervical cancer, the women living with it, and the vaccine to prevent it.  Her story of patient-to-advocate / survivor-to-Cervivor inspires and mentors not only patients and medical communities, but anyone who has struggled with obstacles in their life.