How my story begins: My story begins in September of 2015 when I went in for my routine Pap test. While everything checked out as "normal," I was diagnosed with the beginning battle of the human papillomavirus or HPV. Hearing the words "you have HPV" was both very confusing and slightly terrifying. Aside from some of my medical courses for my bachelors degree, I had never experienced HPV before on such a personal level. I also had never encountered a medical practitioner hand out a diagnosis and then tell me "just stay healthy, get plenty of rest, and don't worry about it!"
Was this not the same virus that I studied in college that attacks the soft tissue of the nose, mouth, and throat causing cancer? Well, okay then?! Nurse practitioner knows best, I guess. So we scheduled a follow-up Pap for November, just to see how things checked out. I left that exam room with only the words of "don't worry" and a false sense of confidence.
November came and I completed my exam with a new nurse practitioner. Due to the busy schedule of the lab, I was told I would get my results emailed if they're the same or clear, or a phone call if things had progressed. Two weeks later, I received a phone call that I was still positive for HPV. From January 2016 to January 2017 I would undergo four colposcopies, each one detailing my progression of cervical dysplasia from CIN I to CIN II with widening margins. Time and time again, I was told, “don’t worry, we’re watching it. Your body can still fight this”, but the last time when I was told I would be reexamined this time NEXT year and see what my progress was, I had had enough. I’d never been a doubtful person with my medical care, but waiting a year to be reexamined left a bad feeling in my gut. I began digging into the research. Turns out there were options or treatment like a LEEP, so why was I being told to wait?
Then on February 14, 2017, I met my game-changing OB, Dr. Silas-Young. She just happened to be inserting my first IUD, and I ran my results by her for a second opinion. Needless to say she was less than impressed with the answers I had been given. She was the head of the Obstetrics and Gynecology department and I suddenly became her patient! I was scheduled for my 5th colposcopy to make sure nothing was missed, and we would schedule my LEEP pending the results.
As always after the procedure, I would get either an email for normal/good results or a phone call for the more intense and detailed results. Seeing the hospital number on my phone, my heart sank. When I answered, I asked her how bad it was and she told me my cervical dysplasia was the same but my endocervical curettage (ECC) revealed a secondary diagnosis unrelated to the cervical dysplasia of adenocarcinoma in situ. The next step would be a procedure called a cold knife cone biopsy where she would take a piece of my cervix to determine if it was an isolated cell collection or if it had progressed to full blown invasive cancer in my uterus that would need substantial treatment.
We needed to move fast as a diagnosis like this could have many moving parts, specialists, and options. She made promises that she would take it one step at a time to try to preserve my uterus if it came down to it. I blanked out. This could not be real. I just had HPV, how did I go from there to this? How long would I have gone while it was silently growing? How did this happen? All these questions and very few answers.
I was scheduled for surgery after the wedding. My poor husband was scheduled to temporary duty travel just 4 days after our wedding, which meant he would not be there to see me through it, but I did have my parents to fill his void. On July 13th, I said goodbye to a big chunk of my cervix and hello to my new life. By some great miracle from above, the adenocarcinoma cells were contained to the ECC sample that was taken with my colposcopy and the cold knife cone biopsy resulted in clean tissue with no further evidence of cell change. I was now cancer, CIN I & II, and HPV free.
I believe everything happens for a reason, and maybe it is to share my story and the importance of being involved in your health. Had I listened and waited a year, who knows where I would be or what problems I would have faced. If you feel something is wrong, please get a second opinion. It is your body, nobody understands it better than you.
Life before my diagnosis: My life before diagnosis was pretty awesome! I was working as a special education paraprofessional with my itty-bitty kindergarteners and loved every minute of it! I was also engaged and busy finalizing all of the last minute details along with getting ready to leave my life here in California to move to Utah with my new husband and embrace life as an Air Force family. It was a wonderful (but stressful) time!
How I felt after diagnosis: After diagnosis, I was numb - like the rug under my feet had been pulled and all I could do was lay there. Suddenly all the future talk of moving, living on or off base, and planning for our distant future family came screeching to a halt. It was a hard time for both my soon-to-be-husband and myself. I don’t think any sane person would do well hearing their new wife has possible life-threatening cancer.
Telling my family and friends: Telling my friends and family was the hardest thing I thought I was ever going to have to do, especially for my dad and his family. Cancer is not a word taken lightly. They had experienced the worst of it when their mother Sarah Toth - the grandmother I never knew and was named after - died after a long battle with breast cancer that metastasized to her spine and reproductive organs. The guilt and sadness that my dad, aunts and uncles would have to endure this again weighed very heavy on my heart. Due to all the unknowns, I stuck to keeping to close family only until I knew more. In addition to my heavy heart, I also had the task of figuring out how to tell my fiancé who was living miles away in Utah. Phone and video calls were the glue in our long distance relationship but I never imagined delivering such news. He was patiently waiting for another "wait and see" update that we had become accustomed to, not "Baby, are you sitting down? I have bad news."
There were lots of tears, and questions that ranged from "What's next?" to "Can we still have our future? Can we still carry our kids?"
All of that was still unknown but my legendary OB wasted no time giving us as much information as she could and every possible outcome (good and bad), pending what they found in my cold knife cone biopsy surgery. Honestly, as upsetting as it was going over the worst case scenario that I may lose all my lady bits, it probably was the best time as I was surrounded by the most amazing bridal party and my parents.
My treatment: Cold knife cone procedure
How I felt after treatment: Physically, no one tells you what to expect after a cold knife cone procedure so let me tell you, it was an adjustment! I was never one to have debilitating cramps or uterus issues and now, here it was! I was very bloated and feeling incredibly sore. Heat pack and lots of binge watching TV shows on the couch for a few days helped while my uterus and what remained of my cervix got themselves together. I never thought removing a little tissue would be so life changing! Also, side note, me staying super healthy for the wedding, mini honeymoon, and the surgery made my body completely crash after my surgery. Double pink eye, a bad cold, and clogged ears were my payback.
Emotionally, I was both relieved and devastated. Waiting for news of what they would find was not a fun waiting game. Would I need more surgery? Chemo? Radiation? Would we try to harvest eggs? Lots of options and lots of emotions running amuck in my head. On top of that, my brand new husband was away for Air Force duty and not by my side so that didn’t help.
Thankfully it all turned out well in the end, but it was one heck of a rollercoaster.
What was most difficult for me: What I found to be the most difficult was (and still is) all the unknowns. Surviving a precancer/cancer diagnosis was the least of my worries, it’s the after effects that are hard at times to swallow and deal with, the biggest two being my future children and possibility of a recurrence.
I have consulted with 3 separate perinatologists and the fact is, no one has answers for if I can get pregnant on my own or if I can even carry a baby to term. My yearly post cone biopsy checks ups require a Pap and an ECC (endocervical curettage) which is extremely painful due to my surgery removing most of my cervix, all major cervical landmarks, and I no longer have a visible opening. Even with high doses of misoprostol (a dilation medication), my OB has to take her best guess where it might be to get her tissue sample.
It’ll be 4 years since my diagnosis and the fear of it coming back with no warning is something I try to push past, but the truth is I hope I am able to use my uterus at least once before I opt for the cure all hysterectomy. Fingers crossed I am able to at least let it fulfill its purpose.
What I did to help myself: I stayed busy as much as possible once I got my cancer diagnosis. How could I not have been busy with a wedding less than 3 weeks away plus trying to stay healthy for my upcoming surgery. I also spent any free moment I had with my two boxer dogs Mason and Stella. When I got my HPV diagnosis, the best thing I ever did was research it. As I mentioned before, as a speech pathology and audiology major we covered HPV a few times as related to nose, mouth and throat cancer, but not much on the effects of the reproductive organs.
My life after cancer: I never imagined life would change so drastically when I lost a chunk of my cervix. I may not have any chemo or radiation stories but I still have lots of anxiety with my exams or if my body does something new. Dr. SIlas-Young is still my hero and she has done so much to make sure I am still healthy. She and my gynecologic oncologist opened the doors to so many specialists for me that I cannot thank them both enough for including second and third opinions. When I moved to New Mexico, Dr. SIlas-Young was able to give me enough information to pass to my new provider, who also did a referral for me so I have always been taken care of. I owe my life, my uterus, and someday baby pictures. I am so thankful to have caught it as early as I did.
Where I am today: I am now 31 years old and cancer free! My marriage did not last like I had planned but divorce and cancer have not stopped me from improving and living my best life. I have decided to go back to school to become an Early Childhood Special Education teacher. I am still working on building my own family and haven't lost sight or hope of becoming a mom. I am currently exploring IVF and surrogacy. At the rate I am going I will most likely be using a sperm donor. All of this has required some pretty hefty financial planning, but I believe what is meant to be will find a way. I try to take it one day at a time as it is and stay busy with work and school. In the meantime I am a dog mommy to my 2 boxers, Odin and SIggy. They keep me busy and give me lots of snuggles.
What I want other women to know: I want other young women to know that I see them. Cancer doesn’t have to result in chemo or radiation to be damaging or life altering. There is no one size fits all story, we are all unique and we are all worthy of giving ourselves some grace in taking back our lives.
How I will try to help others: I try to help others the best I can by encouraging those with children and teens to get vaccinated for HPV. I am also huge on promoting how to be more involved in your health with your doctor. If something doesn’t seem right, get a second opinion, you owe it to yourself.