How my story begins: My story begins in May of 2018. I went in for my yearly pap with my OBGYN of 10 years. My doctor called me a few days later and asked me to come in to do further testing because they found something abnormal deep in my cervix and uterus. I was told not to worry because my HPV test came back negative and I had not had an abnormal pap prior so there was a high percentage it was not cancer. Cancer was not even on the radar of me or my doctor.
I went back one week later for a colposcopy, endocervical curettage and endometrial biopsy. I was not prepared for the pain and discomfort of having the procedure. I described it to my girlfriends as "it felt like my doctor was grating cheese."
I had an IUD for a little less than a year so the appointment started with having that removed which was the easiest part. During the exam, my doctor was very positive and encouraging and telling me that she didn't see anything alarming. After what felt like a lifetime, my appointment was finally done and she said she would have results for me within 3-4 days. It took almost 2 weeks to get my results back because something about my results were not the usual and they wanted a 2nd and 3rd opinion. I still have many questions about my case that doctors have not been able to give me answers to.
On June 18th, the day after Fathers Day, the nurse called me and asked me to come in...before my doctor went on her lunch break. I knew in that moment it was something serious but never in a million years thought it was cancer.
My husband and I went to see her at 12pm. We sat down in one of the exam rooms and she came in a few minutes later and told me, "I'm so sorry but you have cervical cancer." I don't remember much of that appointment, everything sounded so far away. I cried uncontrollably. My husband asked questions to my doctor. The only thing I could say over and over again was, "My girls. My girls need me. This is not possible."
My OBGYN referred me to an oncologist who she worked closely with. I saw him the following day. I do not remember anything from that appointment, I couldn't even tell you one thing that came out of my mouth.
Life before my diagnosis: My life before my diagnosis was amazing. I had a full time job working for a venture capitalist firm, I was married to my husband, and we had 2 young girls. We were busy with our kids activities and involved in their school. Our weeks were filled with work, school and home life. Weekends were spent with our friends and our extended families, girls night out and date nights. Everything was normal and everything couldn't have been better.
How I felt after diagnosis: After diagnosis, I felt scared, terrified and quite honestly, really lonely. I put on a brave face for my girls. I made sure their daily routines did not change. But when I was by myself in the shower or in my bed after my husband fell asleep, I would cry uncontrollably - a cry that came deep from inside of me, a cry that I didn't even recognize was coming from me.
Telling my family and friends: Telling my family and friends wasn't that difficult for me. At first, it was only our immediate family and just a few friends. Every single person was extremely supportive. So that I didn't have to repeat telling the story again and again, I wrote a mass email to the rest of my family and friends the day before my first surgery. I ended my email with asking them to NOT email me back, call me or text me because I was not going to be responding to anybody. Even though I had the support, I just didn't want it.
I pulled back a lot and just cut off contact with most people in my life.
My treatment: My treatment started with my first surgery which was on June 26th, 2018. It was the cold knife cone biopsy, called conization. I had complications from that surgery and ended up having to be rushed back to the OR as I was getting discharged. After the conization, recovery was tough - mentally and physically. Again, reports were delayed and second opinions were brought in. The official diagnosis was Adenosquamous carcinoma, stage 1bII.
After a few weeks, I had a CT scan and then a few weeks after that, I had a PET scan. Because the cancer was so aggressive, we weren't sure if I was going to have a radical hysterectomy or chemo/radiation when I went into surgery on Aug 17th. My treatment ended up being a radical hysterectomy.
How I felt after treatment: After treatment, I still felt a sense of hopelessness and loneliness. I was struggling really hard with my recovery and my mental state. I had my catheter in for 2 weeks. I went in after the 1st week and I was not able to urinate on my own so they had to put it in again for the 2nd week and again, I was not able to urinate on my own. The nurse had to teach me how to self cath and here we are 1 year later and I am still having to self cath.
What was most difficult for me: The most difficult thing for me to deal with post-treatment and post-cancer is the nerve damage. I am reminded every single day, every single time I have to pee what cervical cancer has done to my body. I have had to deal with kidney infections a few times, which have landed me in the ER. But the mental toll that self caths have put on my soul is exhausting. And the fact that there seems to be no answers – or anybody who can give me an answer – as to why or how long or is this permanent is also frustrating because it just feels like this waiting game.
Another difficult thing for me which I didn't even think was going to affect me was not being able to have anymore children. My husband and I were finished having kids. We were blessed with our 2 girls and we knew we were only going to have two. But something about signing the waiver pre-op that you fully understand that you will be sterile and not able to have children was really hard for me. There are times when I selfishly wish I could've pushed my husband to have one more. When I get the call from one of my girlfriends that they are pregnant, there is a small part of me that hurts because I know that will never again be me. Then when those feelings creep in, I feel a terrible guilt because so many of my fellow cervical cancer sisters lost their fertility before they were even able to have any children and here I am with two daughters.
My life after cancer: My life after cancer is nothing like my life before cancer. I deal with anxiety that I never had prior to my diagnosis. I have emotions that are all over the place. I cry more easily, I get angrier quicker. I would rather stay at home rather than have girls night out. I ask myself constantly, "am I being the best mother to my kids after having this second chance at life." I'm hard on myself for sure.
But I have moments I cherish even more deeply that before. I watch my older daughter play soccer in a different light knowing that there could've been a chance that I would have never been at another game of hers. I watch my younger daughter dance on stage with her team with a different smile on my face knowing that just the previous year, I had watched her one week after I was diagnosed - not knowing if that was the last show I would ever be there for.
Nobody prepares you for life after cancer.
During diagnosis and treatment, there are so many resources, answers and support but after cancer, it's like we are thrown into this new life without any real guidance. I feel like I've been thrown into the deep ocean struggling to stay afloat without a flotation device. Nobody prepares you that your marriage will change. Nobody tells you that your friendships will change. Nobody prepares you for the mental healing after cancer. I feel that life after cancer can be more difficult than during treatment because in treatment, at least there was a plan. For life after cancer, there is no plan. For me, it's full of uncertainties.
Where I am today: Where I am today, that is a tough question to answer because that changes. There are weeks where I feel so good mentally or physically and then I get hit with a wave of emotions that knock me out for weeks or months or I get hit with a wave of physical discomfort or tiredness that no amount of sleep can get me back on track.
Every day is a new journey but I am slowly working through it. But I am extremely grateful that my every 3 month check ups with my oncologist have went well and my 1 year check up at the end of August (2019) also went well and I am 1 year cancer free! That is something to celebrate and I really do feel lucky to have this second chance at life.
After celebrating 1 year cancer free, I was diagnosed 3 months later (November 2019) with a reoccurrence in my liver and pelvis. Given the aggressive state and how rare my type of cancer is, we started chemotherapy one week after I found out that the cancer has returned. Since the cancer has left the pelvis, it will continue to pop up. But I refuse to do chemo every couple of years, so I have been doing my own research and advocating for myself. When I attended Cervivor School (September 2019) to become an ambassador, I knew that my main takeaway was so that I can be an advocate for other women. With my new diagnosis and treatment, I know that in my heart, I am suppose to be here to help other women. My voice is stronger than ever.
Update: I had my CT scan on 3/19 and had a video call (due to the quarantine) with my oncologist on 3/24 to go over the results. The tumors have shrunk but aren’t gone. The tumor on my liver has gone done a lot in size but the one in the pelvic not as significant but still a difference. I have had 6 rounds of chemo but that is the maximum benefit I would get so as of now, I will be stopping Taxol and Carboplatin and will be staying on Avastin only. I will still be going in every 3 weeks and we will scan again in 2 months.
What I want other women to know: I want other women to know that you don't have to do this alone. There is an amazing group of women at Cervivor who will support you. There will be so many women who know what you are going through.
Everybody has their own story and own diagnosis but there is a community of women who are here to support you in any way they can because they GET IT. Even in your darkest days, know that you are much stronger than you would have ever imagined. Know that there is a warrior deep in your soul.
Another thing I really want women to know is to take care of yourself because you are worth it. One thing that I never compromised on were my yearly doctor appointments. Scheduling and staying on top of my annual doctor visits truly helped save my life. It helped make sure we found the cancer. I'm glad I had not delayed, especially due to how aggressive my cancer was. Especially as mothers, we are so busy taking care of everyone else, it is so easy for us to forget about ourselves. But please, please put yourself first. It is ok. We have to be our own advocates.
How I will try to help others: I really want to try to help other women not feel so lonely. It is a very dark, scary and lonely road and to have someone in your corner that just "gets it" can really help. Your family and friends are there to support and help you but they don't GET IT. The women of Cervivor are truly a remarkable group of women and the support you will find here is nothing like I have ever experienced.