Emotions

Juggling Gratitude and Luck

I was diagnosed with Stage II cerivcal adenocarcinoma just before Christmas in 2015, caused by HPV 16. Lots of people remember the date they heard those words. I don’t. I remember the fear, the disbelief, the questions, the pounding feeling in my head, and the instinct to run, far, far away. Just keep running away so this would never catch me.

October 5 will mark my five year anniversary of NED (no evidence of disease) diagnosis. I have been waiting for this day, this special marker in the cancer world, since I heard those three words, “You have cancer.” I imagined this day multiple times throughout the years. In my imagination it would be a day of huge celebrations, with a big party with my friends and family to commenorate this huge milestone. It would be a day where I would finally feel relief from the constant worry of recurrence. It would be the day my life went back to “normal” and I could magically turn back into the “pre-cancer-me .”

I was wrong.  

This day comes with many mixed emotions for me. When I was diagnosed, I thought I would go through treatment, recover, move on and never look back. Nothing could be farther from the truth.

I went through the treatments, the chemo, the external radiation, the internal radiation. Treatments that made me so sick I couldn’t work, couldn’t take care of my children, couldn’t do simple tasks like walk up the stairs or eat a small meal. Treatments that took away my fertility and put me into menopause at age 36. I went through countless side effects, including an allergic reaction to chemo, stents being placed in both ureters, a radical hysterectomy, reconstructive bladder surgery, not to mention the daily side effects I still currently deal with. These treatments almost broke me. There were many times I wanted to give up, throw in the towel and declare cancer as the winner.  It is only because of my children that I didn’t do that.

Once I had finally gotten through the treatments for cervical cancer, and hit the one year mark, I was excited. I was on the right track, moving forward. I began to get more involved with Cervivor and advocacy. I began embracing my story and sharing it with anyone who would listen. Then I got the news that I never, ever expected to hear.

I was diagnosed with pre-cancerous lesions on my vaginal wall. A new and different type of cancer, still caused by HPV.  Never, not once, did I imagine I would be dealing with a second, even more rare type of pre-cancerous lesions.  It hit me like a ton of bricks. And yet, with my new found support system through Cervivor, I felt I could handle it. I would do chemo again. I would change my diet and eat zero carbs and zero sugar to help curb the growth of these lesions. I was a woman on a mission and no one could stop me.

Two months later, after treatments, the lesions were gone but the relief still didn’t come. I went to each six month appointment expecting the worst. I became a basket case every six months, for the week leading up to my appointments and for the following week waiting for the results. I was basically incapacitated.  

I was lucky. For the next four years I had clear exams. At my four year appointment, my oncologist told me she didn’t need to see me in six months and that I could wait a full year until my next exam. I felt like this was a huge milestone.  She wasn’t worried, so I could let my guard, just a little bit.

I was wrong, again.

My five year exam revealed that once again I have lesions on my vaginal wall. This time it has wrecked me. The chemo has been very difficult, painful and exhausting. I feel like I have the flu all the time. My anxiety is through the roof, and my physical and emotional stability are precarious, at best. 

And I am still coming up on five years free from cervical cancer. I have so much to be grateful for and to celebrate.  I have not had a recurrence of cervical cancer, which means I most likely won’t. I have two beautiful children and a supportive, adoring husband. My family is amazing and continues to lift me up when I fall. My mom, in particular, is there whenever I need her, day or night, near or far, she is always there for me.  

I am grateful for the way that cancer changed me. It gave me a new purpose in my life, I have been able to lobby with ACSCAN in both California and Washington D.C. I have met the bravest, kindest, most caring women in the world, through Cervivor. Women I never would have met, had it not been for the “exclusive club,” that we were all forced to join. I have learned that I am stronger than I ever thought possible and that my voice and my story matter.  These are all things to celebrate.  

And yet here I sit. Tears streaming down my face.  

I am crying for what I have had to go through. For what my family, my husband and my children have had to go through. And for what we all continue to go through with this round of lesions and chemo. I am crying for the fear that I still have, and will always have, about my future. I am crying for the women I know who weren’t as lucky as I am, and didn’t get to see their five year mark. Because that’s what it boils down to. Luck. Women with the same diagnosis and treatment, and some of us survive and others do not. No one isn’t fighting as hard as they can. None of us leave anything on the table when it comes to this fight against cancer and HPV. Some of us are just lucky, and luck is a very hard thing to celebrate.  

Ana & Jeff

My five year cervical cancer NED anniversary is a conundrum of mixed emotions. I am both optimistic and fearful about my future. I am sad and in a constant state of sorrow for what I have had to endure, and for what others have had to endure, and for the luck of the draw. And yet, I am grateful. So, so, grateful. The amazing thing about being human is that we can hold all of these things at one time. 

So, here’s to five years. In honor of my journey I ask that today you live your best life. Do something that brings you joy, hug those you are close to, and reach out to those who are far away. I ask that you please make your appointments for your Pap and HPV tests, and most of all that you vaccinate your sons and daughters against HPV.

Ana is mother of two, wife, educator and Cervivor Ambassador. She was diagnosed with cervical adenocarcinoma at age 35 and has been diagnosed twice with vaginal lesions, caused by HPV. Ana is currently finishing chemotherapy treatment for these lesions. Her goal is that no woman feels alone when they receive a cervical cancer diagnosis and that her generation be the last to to deal with HPV related cancers.

Thanksgiving with a Side of Gratitude (or Not)

Thanksgiving is a big meal, and the main course of the holiday is gratitude.

Cervivor is a place to get real. So let’s put this on our holiday table: is gratitude easy or tough for you? As cancer survivors, can we confess that we sometimes have a tricky on-again off-again relationship with gratitude? If you’ve just received a diagnosis, gratitude is the last thing on your mind. It wasn’t on my mind in the chemotherapy chair.

As a survivor, I am epically, hugely, ginormously (seriously!) grateful for every day that I have. But that is mixed, still – 18 years later – with the feelings about my lost fertility and, on a bad day, frustration about my ongoing health battles with the after-effects of cancer.

The reassuring part is, I know I’m not alone. I just need to turn to Cervivor Stories and the Cervivor blog to know that others are riding with me on the emotional rollercoaster of the holiday season. I’m feeling grateful to the Cervivors who wrote so honestly about their own gratitude struggles. Thank you for keeping it real. And honest.

 “I wasn’t in a spirit for any holiday after receiving my diagnosis. Everything had gone dark. That year there was no giving thanks on Thanksgiving, no tree for Christmas. What was the sense of doing all that if I felt uncertain about my life? It took a while for me to feel ready to fight back. It was a difficult journey, but I got a second shot at life. Now, I give thanks every day as if it were Thanksgiving Day. I celebrate each day and see it as a gift given to me like a Christmas present. There’s so much I want to do, and I don’t take anything for granted. I see life differently now. Problems that seemed huge are not so big anymore. I really don’t sweat the small stuff.”  – Patti

“It’s perfectly normal after cancer to have feelings of depression and anxiety. However, once we acknowledge them, we get to CHOOSE what to do with them… Since cancer, I choose to live in a different state of mind. Cancer brings you face to face with mortality, death, and time. Once I began to digest my mortality, it changed my mindset toward every single thing.

I no longer look at the holiday season with the same weight and importance as when I was a child. I still love them, and Christmas is STILL my favorite. But I live with much more intention and purpose now. Every day is Christmas because for me it’s a state of mind that I choose.  New Years’ Eve brings hope and excitement, but I am just as excited about the next 365 days of opportunity and growth.  This shift isn’t something that just happens. For me, it takes a bit of work.” – Holly

“It’s hard to feel grateful when you are nauseous, exhausted, depleted, and in pain.  That’s ok!  I would go into a cycle of feeling depressed, and then get mad at myself for not being more thankful that I would make it out of this alive. My boyfriend would constantly tell me, “You’re ‘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… 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. 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.” – Ana

“This past year has been a process.  A process of grief, depression, anxiety, anger and many tears, as well as gratitude, blessings and opportunity.” – Megan

“I had so much unresolved grief and unanswered questions. Cervivor help me settle some things within myself and fulfill the need I have for service to honor my mom. I am so thankful that Cervivor has once made me believe that I can go on. I can go on and help fight cervical cancer.” – Lillian

Do these reflections resonate with you?

What are you grateful for, and what are your gratitude struggles?

Please share in the comments below. We are here to listen and we are here to support you.

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.