Recurrence

A Turn of Events

Gilma Pereda, Cervical Cancer Patient

“You have a metastasis.”

These are the words that every cancer survivor fears – not only because they mean the cancer is back, but because it has spread to other parts of the body, which has the potential to make treatment a highly complex endeavor.

I was a couple of months shy of the 5-year mark of living cancer free when I received the scary news. And because life is funny that way, it happened right on Halloween, my favorite holiday. Since I received instructions to go to the hospital immediately for an emergency neck neurosurgery, I donned a realistic “ER Patient” costume that day, a neck brace and all.

How did I get there, you might ask? I went to all my 3-month, 6-month, and 12-month checkups. I followed all the post-treatment instructions carefully, from quitting alcohol and sugar to using the dilator mostly every night. I exercised regularly and practiced meditation. My last pap in October 2020 was clear.

It all started with acute pain in my right shoulder, which I thought was work-related tendinitis (I’m a graphic designer, and I use a graphic tablet daily). The pain traveled to my back, neck, and left shoulder – it felt like my joints were on fire. I started having high fevers and chills and woke up every night drenched in sweat.

I went to see my primary doctor, who diagnosed pneumonia. I finished the 10-day antibiotic treatment, but the pain continued. He then ordered special labs and scans. The inflammation markers were up high, and the scans revealed a large mass in the right lung. A more specialized CT scan showed many lytic lesions (bone cancer) all over my body, the more significant ones in a couple of cervicals, right next to the spinal cord. The delicate nature of those lesions was what prompted the surgery.

A lot happened after my Halloween adventure: I had a lung biopsy, a blood transfusion (due to dangerously low hemoglobin levels), and a few nightly trips to the ER that introduced me to opioids and the glory of morphine shots. But that way of dealing with physical pain destroyed my gastrointestinal system, so I ended up in the hospital for what felt like an eternity. Once there, I was on suicidal watch for a few days. But after my first chemo treatment, my oncologist was hopeful – my age qualified me to get a new treatment after chemo. Moreover, there was a good possibility that I could get into remission in a couple of years.

The doctors sent the lung biopsy to quite a few places for research. The results indicated it was cervical cancer. Again. I must confess I found it amusing that I had cervical cancer in my cervicals.

The journey has not been easy. The first thing I did when I was able to get out of my head was to contact a few of my Cervivor sisters. I’ve received greeting cards, care packages, soft hoodies and beanies that I wear all the time (Monterey is chilly!), and loving support, even from sisters who don’t even know me! I’m forever grateful to this wonderful community of strong women who encourage me to keep going.

I’m not officially cancer free yet, but I no longer experience the excruciating pain that comes with bone cancer. After eight rounds of chemo, most of my lesions are getting healed, and the lung tumor is shrinking significantly. As a result, I went from being bedridden to walking with a cane to going on light hikes and walks. I love my new eyelashes, eyebrows, and pixie haircut. In addition, I’m receiving immunotherapy every three weeks, so I now have the energy to go back to school, keep up with my work as a freelance designer, and enjoy quality time with my family and friends.

As October is officially here, I’m starting to plan my Halloween costume. This year I refuse to wear a scary one – I want something inspiring and hopeful. Maybe I could be a “Cervivor Advocate.” It’s payback time.

Gilma Pereda is a metastatic and recurrent cervical cancer patient located in sunny California. She is a graphic designer and translator who wants to lend her skills to a good cause – an effort to educate women and men about HPV and what they can do to prevent it, to promote vaccines for children, and to motivate women that are living with cancer today to feel empowered.

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.