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.

Bringing Cancer to the Office

I started journaling through my diagnosis with cervical cancer at 3am. It was the day after I found out that the traumatic LEEP procedure I’d just endured to remove persistent high-risk HPV lesions ended up revealing early stage cervical cancer that signaled I would need a hysterectomy. My husband said, “You should write about this.” He knows it’s how I process everything, so when I couldn’t shut my brain off in the early hours of the morning, I got out of bed, sat on the couch under a blanket and stared into the blue light of my laptop for the next two hours, unloading every fear, checklist item, angry rant, and heartbroken realization onto a bright white page.

That night, I wrote the following:

“I’ve known that I have cervical cancer for 24 hours now and I’m already unable to sleep, pouring over the mental checklist I need to attack in order to get to the place I want to be more than anywhere else– Living a life that isn’t entirely consumed by the word that has run through my brain and stumbled off my lips constantly for the past day–adenocarcinoma. On repeat.

I have to inform so many people. Family. Close friends. I have to figure out how to tell my bosses that I have cancer. What a fun three words those are to drop into a room. I’ve done it 6 times now in 24 hours and my heart doesn’t race any less with each chance I get to practice.

I have to figure out how to take time off from work to recover from two upcoming surgeries. What’s FMLA? Short-term disability? PTO? Can I trust HR? Will they hire a temp who will somehow phase me out of my position? Gotta worry about all of those things until I have an ulcer. Added to checklist.”

A cancer diagnosis gives you two choices: A) Pull inward and isolate or B) Open up and be vulnerable. At first, my inclination was to go with option A. I was uncomfortable with getting attention, especially for something like cervical cancer. It’s happening in a really private area! Literally. So revealing this diagnosis feels a little like baring everything. Not to mention that there’s widespread misinformation in our culture about how HPV and cervical cancer happen, and it rarely paints the women who’s suffering in a positive light. It’s unfair and overwhelming.

I’d been working at my Graphic Design job for just over 2 years when I was diagnosed. Before that, I worked at a large, multi-site church in the Communications and Marketing department for about 4 years. The office culture there was familial. We let ourselves be seen and known, supported and loved by one another. It was a nurturing, one-of-a-kind work environment. When my time ended at the church, I had a lot of fear about going back to corporate work. I had worked as a Graphic Designer for corporations in years prior to my time at the church, and I remembered the facade of professionalism that seemed to be required to fit in and excel. I personally found it exhausting and often wished I could just be myself at the office. Church work gave me that freedom and I knew I’d miss it.

So far at my new job, I had made several friends in my department but there was still an element of guardedness in how we related to one another. There’s nothing wrong with this at all. In fact, it’s to be expected in an office environment. We have important work to focus on and personal time is for happy hour, right?!

But after journaling through the weekend, I decided that when I went back to work on Monday, I would choose option B and bring the honesty and transparency of the church environment into my corporate job. I’d be real and open and let myself be seen. I felt like keeping up the facade was going to be too exhausting for me, so I needed to face the fear of being known head-on.

It wasn’t easy. Vulnerability never is. I set my bag down on my chair in my cubicle, set up my laptop, grabbed my coffee and marched over to my boss’s office. I asked him if he had a moment, I shut the door, sat down on the other side of his desk and told him that I had a health update. My heart was racing. I could feel it in my stomach.

He stopped me right away, because he’s a fantastic boss, and said, “Before you say anything, I want you to know that you don’t have to tell me anything. You’re not required to.” I was grateful that he said that. But I still chose to share. “As you know, I had a biopsy done a few days ago, and unfortunately it revealed that I have cervical cancer.” Long pause. Dropping that bomb into rooms is like cruel, undeserved punishment for someone who just got The Call. Cancer is a job you didn’t sign up for and blowing up people’s emotions is your first order of business.

I told him I’d need a hysterectomy soon and hoped he could help me figure out what I needed to do about benefits and medical leave. He was immediately understanding and empathetic, offered to help however I needed, and told me about how he supported a former employee as he was battling cancer years ago. In the weeks to come, he even lobbied with upper management to get a contract production designer hired to help cover my workload throughout this time and when I’m recovering from surgery.

At 10am, I had my weekly email design and strategy meeting. We usually spend a few minutes catching up with one another. On this day, we’d learned that one of our coworkers had gone into labor the night before. Everyone in the meeting was so excited for her and I really was too! As the happy chatter continued, I knew the conversation would circle over to me soon and it would be time again for me to blow everyone’s joy into oblivion. Even though our friend was having her first baby, I had just learned that my husband and I would likely never get to have one of our own. I also knew the coworker sitting next to me lost his partner to cancer a few years ago, and I didn’t want to trigger grief in him. But I remembered the promise I made to myself. Option B. Vulnerability.

So when the meeting leader turned to me and asked about my weekend, with everyone’s eyes on me, I said, “Well, I don’t want to bring the room down. But this weekend I found out that I have cervical cancer.” Sucked the joy right out. I fielded a few questions to the room, and each person responded with empathy and kindness. A few colleagues sent me emails later that day with supportive messages, too. After that meeting, I asked another coworker that I spend quite a bit of time with to have lunch with me on a picnic table behind our office building. I quickly shared the news with her and she teared up and asked if she could hug me. She asked a lot of questions and was more supportive than I could have ever dreamed.

When something like this happens to you, you want everything to stop–but the world keeps spinning. It’s hard to care about the little issues that arise at work. Your perspective is widened, and suddenly the hangups of work projects become annoyingly miniscule worries to you. It’s hard to care enough. It can be draining and so frustrating. You constantly ask yourself, “But does any of this REALLY MATTER?” But your job remains as important as it was before you had cancer, so you learn to do whatever it takes to keep doing your best.

Andrea with her amazing co-workers.

Vulnerability has been a large part of that for me.

As time passed between my diagnosis and my hysterectomy, my coworkers often asked me how I was doing, which gave me permission to remove the corporate mask and be real. They left cards and notes and chocolate on my desk. We went to lunches together where I could share what was going on. My hysterectomy is coming up in just a week, and at the end of a really low couple of days this week, a sweet coworker popped into my cubicle and dropped off a prayer shawl, coloring books and pencils, a heartfelt card, and some snacks to help brighten up my recovery time. I have been so overwhelmed by the kindness these people have shown me. It’s really made going to work with this cancer cloud over my head so much easier than it could have been, if I’d kept it all to myself and continued to put vague appointments in my Outlook calendar.

Being completely real is a freedom we deserve, while we hold down our 9-5s and simultaneously do the work to get through a cancer diagnosis and all the darkness it can bring with it. For all the things I feared about how my vulnerability would be received in a professional corporate environment, the way my coworkers responded squelched every bit of insecurity. Choosing vulnerability forces you to learn to receive love and to accept yourself as you are, wherever you are in the process. It took courage to be real, but the payoff was priceless.

Andrea Bonhiver is a graphic designer and writer living in Minneapolis, MN with her husband of 2.5 years Justin and their dog-son, Louis. She was diagnosed with cervical adenocarcinoma in 2018. She’ll undergo a hysterectomy on March 7, 2019.