How my story begins: Since I had gotten insurance again I decided to go in for an annual OB-GYN check up and make sure everything was good down there since we had wanted to start trying to have a baby. I had a history of abnormal Paps and I knew that HPV was present but I didn't have a clear picture that HPV could cause cancer. I had a normal Pap for once in my life just before I lost my job (and my health insurance). But I'd been healthy so I didn't worry about those 5 years of having check-ups. How wrong I was! I didn't have any crazy symptoms, just a little spotting after sex. But even that wasn't every time, just occasionally. So back to my appointment: I had to find a new doctor since my previous one had retired. My new doctor was super nice. I wasn't terribly surprised when my Pap came back as abnormal as I had a history of them and had even had a colposcopy before - back in college - but nothing had ever went any further. So another colposcopy was scheduled. My doctor was pretty positive that everything would come back fine and she didn't really see anything that looked wrong...
My results came back with a high grade CIN 3. So now we were looking at a LEEP. I had no idea what that was, which I now know is a little electrified wire that the use to shave off parts of your cervix. I would also be placed under anesthesia for the first time ever. My doctor was still very positive and that the LEEP would take care of the abnormal cells. My LEEP was scheduled for Friday, March 27th 2015. My mom took me to the hospital for the procedure since I would be twilighted and couldn't drive after. Everything went fine during the procedure and my doctor said we would get the results back in a couple days. While cancer had been mentioned, it was way down on the list of possible outcomes. So I had taken Monday off of work as well since I didn't know how much pain I was going to be in after the procedure.
I got a call from my doctors office and when I answered it was actually my doctor - which is when you know something is wrong as usually it is just the nurse calling. The doctor said that the results were not good and asked me to come in the next day (Tuesday) to talk to her. I said "Yes" and then proceeded to cry for an hour knowing that it was cancer. I was home alone. I don't think I have ever felt more alone than in that moment. Since I was home and not at work I called the doctor back and wanted to get in that same day to talk. I tried calling my mom to see if she could come to the appointment with me as I really didn't want to go there alone but she was still working and wouldn't get home in time. She suggested I call my Aunt Janice, as she had retired and was home. I called and she came, and I will be forever thankful that she did, as much as the news sucked, she was there for me in the moment I needed someone the most. So we went in and my doctor laid it on me: I had Cervical Cancer.
It was early but it was cancer and the treatment was a hysterectomy, which meant no kids. Since I had already cried about the cancer what hit me now was that I wouldn't be able to have children. She referred me to an oncologist at Loyola in Chicago.
Life before my diagnosis: It felt like you normal life. Me and my husband were about to celebrate our 7th wedding anniversary and had moved into our own house a couple of years earlier. We both had steady jobs and I finally had health insurance again after give years of not having any. So we decided we were in a good place to finally start a family.
How I felt after diagnosis: I felt like my life had stopped. I had cancer. What was that going to entail?! From what my doctor said surgery at least, which I had never had before. Was I going to have to go through chemo and radiation? Would I be sick? Be able to work? Was I going to die? All of these questions raced through my head and, on top of all that, I couldn't have kids.
Telling my family and friends: So at this time only my Mom and my Aunt knew. I had to tell my husband. That sucked. We both cried. We didn't know where our lives were now headed. We both took that Tuesday off and we went back in to talk to my doctor together. She had actually received the lab results back and we went over them together and she staged me at 1B2. Which was still stage 1 but the tumor was starting to interact with the outer wall of my cervix. I had a tumor. So I told my Dad and brother and some of my close friends what had happened but I didn't want more than that initially. I didn't say not to tell anyone else, I figured that was implied but one of my friends told someone else and suddenly everybody knew. I hated the looks, the pity. I just wanted to keep living like a normal person especially since I didn't know what was going to happen. I'm still kinda irritated about that.
My treatment: Off to Loyola we go to find out what is in store for me. Let me tell you about awkward, having your mom and husband in the same room as you while you are getting examined. They were behind a curtain, but still. This oncologists was super nice and I would've loved to have him as my surgeon however he referred me to another oncologists at University of Chicago. Since I was young and wanted to have a family he thought I was a candidate for a radical trachelectomy, which is a surgery that removes the cervix and nearby tissue but can allow for pregnancy, YOU KEEP YOUR UTERUS AND OVARIES. The trachelecomy isn't a very known procedure, in fact there are only 7 or so people in the US that know how to do this. I was lucky enough that I lived close enough to Chicago that I could travel there for all of these amazing doctors for treatment. So off to the University of Chicago and to meet Dr. Lengyel. He is amazing. He truly cares for his patients and wants to see them succeed. So I was a candidate for this procedure and it was scheduled for May 15th, which was only a month later. In that time I had to fit in a CT scan, chest x-rays, blood work and an MRI. Lots and lots to do. My work was incredibly understanding with all the time I was taking off and would take off and I was paid for every single hour I was not there, which was a lot more than what my allotment of time was.
Let's talk about prep for surgery. I had to drink magnesium citrate, which for those who don't know this voids your bowels of everything. Hours and hours of running to the toilet. That really sucks. Then only clear liquids after you start and nothing after midnight the day of. My surgery was scheduled for 11am which meant we needed to be there at 8am, which driving into Chicago meant leaving at 5:30 am, because we had to fight rush hour traffic into the city. Once we were it was a waiting game and my anxiety was through the roof of not knowing and this being my first major surgery and also not knowing if I would be having the trachelectomy or a hysterectomy based on where the tumor was and if they could get clear margins. I am not normally an anxious person!
The surgery before mine ran long so I didn't actually go back to be prepped until 11:30am and I believe it started around 1pm when I actually went back. 9 hours of surgery. My husband, mom and one of my husband's friends were there with me that day and had to sit and wait. My husband said it was one of the worst times ever, just waiting there while I was in surgery. So I made it through and had gotten my trachelectomy via the Davinci Robot. So I ended up with 5 scars making a rainbow with my belly button at the top. I spent 3 days in the hospital and left under my own power but in a lot of pain. A two hour car ride home did not help. And I was expected to be back in Chicago in Tuesday for my first of many follow ups. At one of appointments he told me that we had gotten it all and I was NED but then about 2 weeks later the final pathology report came back and it had a little surprise in it. It stated that there was LVSI present, which to this day I am not 100% clear on what that is but it is Lymphovascular invasion (LVI or lymphovascular space invasion) is the invasion of a cancer to the blood vessels and/or lymphatics. So he wanted me to meet with the raditation oncologist. Since the amount of LVSI was so small, they gave me 3 options.
1: do nothing and wait and see,
2: get pregnant and then get a hysterectomy, or
3: do the radiation.
Since the radiation would destroy everything we had just worked so hard to save I chose #2. After a year we could start trying however there were complications. Sometime in June my cervical stitch came out, the stitch they put in to keep my uterus closed if I got pregnant, and it caused scar tissue to form and close off my already small opening to my uterus. I had been getting my period since my surgery I had two of them and then after they stopped completely. Still getting symptoms just nothing happening. I had another MRI and confirmed the scar tissue and another surgery was scheduled for November to open me back up and to place a permanent stitch in called a trans-abdominal Cerclage or TAC for short. So the God of these TAC's which people come from around the world to have preformed was a doctor at the University of Chicago so Dr. Haney and Dr. Lengyel teamed up and did my surgery. It seemed to have worked. I got my period again but it was super, super light.
So let's fast forward to when we started trying, we tried naturally for a year and nothing. So we then started seeing a fertility specialist, blood work and sperm analysis. My husband was fine, I was diagnosed with hypothyroidism and had to go on medication to lower my TSH levels, which this was 2017 and have finally now in 2021 have gotten that under control with yet another specialist. So we went through trigger shots to try to help with getting pregnant. No go. So we moved onto trying to do an IUI but when we tried to insert a catheter to my uterus the doctor couldn't find my opening in what was left of my cervix. So went back to U of C for another procedure: anesthetized guided ultrasound insertion. Dr. Lengyel said he was able to reach my uterus, however we found out that my canal to my uterus is like a roller coaster and would not be able to be done easily. So this is early 2018 now and the IUI option is out and I would have to go to the IVF route. Good news, my insurance would cover most of it, Bad news what it wouldn't cover was a lot and I needed a specialist that could do a transmyometrial embryo transfer, which there wasn't one in the area. So after much soul searching we decided to stop trying and to resolve that we wouldn't be able to have children naturally. We are still discussing other options but I don't know if any are going to actually come to fruition.
How I felt after treatment: Relieved, Frustrated, Angry. Basically a lot of emotions. I was happy that the cancer was gone but my life wasn't the same as it was before. I kinda wish I had just gotten the hysterectomy and gone through all of the emotions during that time instead of drawing it out for 4 years before having to go through them over and over again. Hope is awesome to have but it also crushing at the same time. I would've liked to of spared me that, of course if it had actually worked this would be a different story. I still have that niggle of fear in the back of my mind because of the LVSI. Is it going to come back and haunt me?
What was most difficult for me: Dealing with the loss of my fertility. I felt that I had failed because I couldn't have kids. It was a lot to work through but as my family tells me they are happy that I am still here and that is what is important. I had so many issues resulting from my surgeries and the hormones from fertility treatments. I started getting incredibly painful ovulation cycles and periods. So 2 weeks out of the month spent in pain with horrible cramps and then after my period I would start getting stomach cramps for a week after that. We were still trying to get pregnant so there was nothing I could do at the time. After we decided to stop I talked to my obgyn about it and went on the Depro shot. Best thing ever! No more pain and no more periods. But it was the final nail not getting pregnant. I have a hard time with pregnant people. I understand that it is irrational and I am working on it, but they make me so mad. It seemed like everyone I knew was pregnant or getting pregnant after I was diagnosed and not many understood that I was happy for them but I wasn't at the same time. It was and is still hard for me as that is what I want but can't have.
What I did to help myself: I started telling my story. I didn't want to for a long time after but once I did it I realized it was helping me get over all of my unresolved feelings. I felt like if I had to go through this and by talking about it helped someone else it gave me a purpose as to why.
Where I am today: I feel better about what I went through and finding like minded women that went through the same thing. It makes me feel less isolated. I am much more comfortable talking about everything I went through and I found Cervivor. I was honored enough to attend the 2019 Cervivor School in Chicago and it was absolutely amazing.
What I want other women to know: You are not alone. Listen to yourself, if something doesn't feel right make sure you are heard and don't stop until you are.
How I will try to help others: I tell my story to educate others about the danger of not going to the doctor and about HPV because I wouldn't want anyone else to go through this if they didn't have to.