infertility

My Story as a Traditional Asian Daughter

Both my parents immigrated from Thailand at a young age; met, fell in love, and had me. My grandmother and aunt moved from Thailand to Southern California, a completely foreign land, to help raise me while my parents strived to obtain their American Dream. Even though I was an American kid who listened to News Kids on the Block on the radio, I was still a traditional Asian daughter removing my shoes before entering my home and eating delicious home-cooked Chinese meals. Not only was I physically raised in the Asian culture, but I also absorbed all the traditional Asian characteristics as well.

I was taught to follow strict directions, strive for perfection, and above all conceal my emotions. When you are fortunate enough to be born with the “crying mole”, a beauty mark beneath my right eye, you are taught always to withhold your emotions and tears.  No matter how large the cut, or how much disappointment I felt for failing a test I was taught not to display any emotion. I know this might sound like a harsh way to raise a child, but crying and showing emotion was a sign of weakness in my family. My family wanted me to grow up to be a strong, independent woman while honoring my heritage and culture. 

My strength was first tested when I was diagnosed with HPV at 18. I was a confused hormonal teenager and couldn’t comprehend what was happening. My world was turned upside down and the worse part was I was alone. I couldn’t tell my parents for fear that I would disappoint them. I couldn’t call my friends because I didn’t know what to say. I sat in my truck alone, with the phone in my hand, listening to the dial tone and suddenly tears came gushing out. But somehow, the memory of when I fell off my bike and the sound of my aunt’s voice telling me, “You can choose to sit here and cry or you can clean yourself off and do something about it.” I chose to do something. I quickly started to research HPV at the university library. I needed to understand what was IN me, how did I get it and what could I do about it. I was shocked to learn what my doctor told me was a “minor instance” of HPV could be linked to cervical cancer. I immediately called my doctor and started the process of advocating for myself. I called and called until I got a second opinion from another OBGYN who confirmed that I had cervical dysplasia (CIN III). 

Life seemed to continue for me. I fell in love, graduated with a degree in English Literature, and got in engaged. A few weeks before walking down the aisle I received a call from my OBGYN that tested my strength yet again. My stubborn HPV decided to come back to life and I was diagnosed with 1A1 cervical cancer. In her calming voice, she said “You’re going to be ok. You did everything right, and we caught this very early.” I cried and through my tears explained that I was getting married in a few weeks. I remember the long pause in her voice as she took a deep breath and said “This is not going to take away your happiness, you go walk down that aisle and get married. Go on your honeymoon, and when you get back, we’re going to take care of you. Don’t let this stop you from living your life.” I got off the phone and cried as my fiancé held me until I fell asleep. I followed my doctor’s orders, hid the pain and fears, and got married on August 19th, 2006. And she was right, it was one of the happiest days of my life. 

I truly thought that I overcame the biggest obstacle in my life, surviving cancer, but I was wrong. My husband and I tried for years to have a child. We suffered miscarriages after miscarriages and failed infertility treatments. It was painful every time we got a pregnancy announcement from friends and family. I remember hiding my pain as I congratulated all my friends when I held their newborn children. I wanted a family of my own, but because of the various surgical procedures due to the HPV and cervical cancer, it was difficult. Finally, after years of trying we found out that we were pregnant. I was overjoyed! I knew from the start that even though I got pregnant carrying my baby to full-term was the ultimate battle.

At the start of the second trimester, my cervix (which was nearly gone) was “shrinking” and I was rushed into surgery to insert a cerclage to help keep my cervix closed. I was terrified. I could lose the baby I had wanted for so long. After the surgery, I was placed on modified bed rest, which consisted of coming downstairs once a day, only getting up to go to the bathroom and get food, but mainly off my feet. I told the doctor I would do whatever it took to keep my baby safe. I was hopeful that by restricting my movement for the second trimester I would be rewarded with the freedom in the third trimester.

Unfortunately, that was not the case. At the start of the third trimester, I was placed on full bed rest, only allowed to get up to go to the bathroom and shower once a day, and back to laying down on the bed. For two months I laid on my bed, holding back all the emotions I was feeling, in fear that I would lose the only strength I had left to keep my daughter safe. Finally, at the 30th week, the doctors felt that it was safe to remove the cerclage and release me from bed rest. I was FREE! I could finally see and feel my toes, I could feel the sunlight on my face and see the world again. But the best news, my daughter was safe. My daughter, Samantha Reagan Paguio was born on January 15th, 2013 in style, three days after her due date. 

I know my upbringing to some, might seem cold, restrictive, and harsh, but I am thankful for the matriarchs in my family: my mom, my Ama (grandmother), and my aunt. Their wisdom and traditional ways taught me how to harness my strength when I desperately needed it. Without them and their lessons, I would not be who I am today: a book editor, a mom, a friend, a wife, a daughter, and a Cervivor.

Joslyn Paguio graduated from the University of California, Riverside with a BA in Literature. She is currently a Senior Acquisitions Editor at Elsevier, overseeing the Neuroscience and Psychology book list. Since being diagnosed at 18 with HPV and then cervical cancer, with multiple recurrences, she has dedicated herself to educating others and advocating for the HPV vaccine. She is currently hosting a monthly podcast for Cervivor, interviewing cervical cancer patients and survivors, and addressing issues they face. During her spare time, she enjoys reading, cooking, and traveling with her family.

Infertility Awareness Week

One cervical cancer survivor sat down with Cervivor to share her story, how she navigated infertility, and what that looked like for her journey.

Can you tell us a little bit about your age and what your diagnosis was?

I was diagnosed with clear-cell cervical cancer when I was 24. This was ten years after being diagnosed with an unrelated childhood cancer, Hodgkins Lymphoma. You think you get hit once and it won’t happen again, but boy was I wrong. My oncologist said that the cervical cancer diagnosis was so rare, they were unsure of how I got it. 

What did treatment look like for you?

I was given a couple of options for treatment. I had just gotten engaged several weeks earlier, so that definitely influenced my decision for treatment. 

My first option was to get a hysterectomy, totally remove my uterus, but leave my ovaries to preserve my fertility and hormone function. This was the option most of my doctors recommended to treat this type of aggressive cancer. They said I would possibly need radiation after depending on what they found when they went in. 

The second option was to go through chemotherapy and possibly radiation to shrink the tumor, and then have a surgical intervention, a trachelectomy, to remove my cervix and the tumor. The doctors said that during this surgery if cancer margins were not met, I may have to get a hysterectomy. They also were unsure if the chemo would even work since this cancer was rare and aggressive. 

I ended up choosing the first option and I underwent a vertical (open, not laparoscopic) hysterectomy, and they moved my ovaries up, out of the field of radiation to preserve my fertility. Prior to this surgery, the doctors allowed me to delay a couple of months so that I could go through an egg retrieval and freeze my eggs. 

How did you learn that you were going to be faced with infertility?

Upon diagnosis, it was pretty clear that I would have some sort of infertility, either no uterus, or no cervix depending on the treatment option I went forward with.

I will say, that after processing and going through all this, I (or we as a couple) knew going into family planning that we would have challenges and would either have to adopt or use a surrogate. 1 in 4 couples go through infertility and they have working ‘parts’. I always said that at least we kind of knew going in vs. trying for a year or more and then having to seek out help from fertility doctors. We knew and were able to prepare ourselves for this process. 

What did you do to help yourself through those emotions?

My fiancé and my family were really my emotional soundboards at the time. I did a lot of crying. I tried to get out of the house and just ‘forget’ for a little bit. At the time I was working in healthcare with women going through high-risk pregnancies, and that was really hard to be around. I had some time off of work, which definitely helped clear my head. The hikes, walks, friends, and family really kept me going. 

Is there anything you would want anyone else facing these emotions to know?

You are not alone. It sounds cliche, but you are not. I actually recently spoke to a young single woman who has to have a hysterectomy for medical reasons too and we shared our stories and our journeys and it was just nice to connect with someone who understands exactly what you are dealing with. 

Reach out to local organizations, or even your doctor as they may know other patients who are open and willing to share and connect!

I will also say, to ask your doctor about the pros and consequences of any treatment or decisions you make. I froze my eggs soon before surgery, to be able to use them later on. Nobody encouraged us to freeze embryos instead, which have a much higher rate of survival after thaw. The focus then was on the cancer and it was very rushed. That is a whole other story too, but had all that been transparent, our course of action, and chances of starting our family earlier/differently, would have been altered. When I spoke to my doctor about this after the fact, she made a point that she as an oncologist was acting to save my life and treat the cancer, they didn’t think about the after and the long-term issues or effects on my fertility.

Can you share where you’re at in your journey now?

Thank God I have been cancer free for over four years. I have since gotten married, and we are so blessed to have welcomed our first child into the world via an amazing surrogate. This was not an easy process, but we are so grateful to her and her family for putting their lives on hold so we could start our family. There were so many bumps and decisions along the way; picking an agency to work with or to go ‘independent’ and find our own surrogate, matching with her, all the legalities that we had to go through, emotions, failed treatments, rude comments, time waiting, and the stress and emotional toll of not carrying my own child. I could talk for hours about that all, but with the grace of God, we did it! When they say it takes a village to raise a child, I would say it also does to bring one into this world.

Read more Cervivor stories like this one on our website here. Are you a cervical cancer patient or survivor? Share your story with us today!