How my story begins: I was (still am!) a single mother of two young children. At the time, they were 6 and 8. I was working full time as a teacher. My life was very busy, to say the least.
I began having abnormal paps with my first pregnancy when I was 27. I went through multiple LEEPs and colposcopies over the next 9 years but they always came back clear. So my doctors told me not to worry. I had an IUD placed in 2009 after my son's birth. In October 2015, I started bleeding and went in to have the IUD removed by an on call OB/GYN (not my regular doctor). She looked at my history of abnormal Paps and said, "I'm going to do a Pap now, and I am going to sample the cells a little higher up in your cervix." It is possible, had she not done that, that I wouldn't have found out when I did about my adenocarcinoma. The results came back a week later as abnormal and I went in for the colpo. When the colpo results came back as cancer, I was in shock.
How I felt after diagnosis: When my OB called me and said, "This is actual cancer, not precancerous cells. I can't treat this and I have referred you to an gynecologic oncologist. They should be calling you sometime today or tomorrow," I was in complete shock. I got the call at work, and sat in my classroom staring at the wall for 15 minutes before I could even move. I left work and called my parents and my best friend. I had to pull over to the side of the road and cry. I had the overwhelming feeling of, "I have to get out of here, I have to get away from all of this," but I couldn't move. I sat in my car, crying for about an hour. Then I got the call from the oncologist scheduling an appointment for the next day. I thought, "This must be pretty bad if they want to see me so soon." At that appointment, they told me I was stage 2, and that it had been difficult to detect my cancer because it was higher up in my cervix. I was scared out of my mind that I was going to die and leave behind my two young kids.
Telling my family and friends: I told my parents and a few close friends immediately. My parents told the rest of our family (with my consent). I didn't post anything about my diagnosis or treatment on social media because I was embarrassed. Who wants the whole world to know about what is going on in your vagina??? I knew one other person who had had cancer; however, she had breast cancer and was 25 years older than I was. I had some long talks with her about what her treatment was like, but I always wished I had had someone my age to talk to while going through this.
My treatment: Because my cancer was already at stage 2, I was told I needed 6 weeks of chemotherapy, 30 external radiation treatments and 3 internal radiation treatments. Before starting the radiation and chemo, my doctor performed a laparoscopic surgery to remove my Fallopian tubes and move my ovaries higher into my abdomen so that we could hopefully preserve their function and I wouldn't go in to menopause. After recovering from that, I started chemo.
My last chemo treatment caused an allergic reaction and I couldn't breath and was covered in hives. I had lots of side effects from both the chemo and radiation, and lost a lot of weight. I was thankful that I didn't lose my hair. I wasn't able to enjoy Christmas, New Years, or either of my children's birthdays. I stopped working because I was so weak. I began having hot flashes and went in to menopause because the laparoscopic surgery to protect my ovaries didn't work (it only has a 50% success rate).
I finished my treatments at the end of March and stayed on disability until school began again in August 2016. Over the summer break, I began to get my strength back, but I continued to have a lot of discharge, like 3 or 4 pads a day of discharge. I told my doctors and they said it was just from the radiation and to call back if it wasn't better in 6 weeks...2 months...1 more month...It never got better. Finally, I demanded another PET scan, which showed I had residual cancer.
On October 5th, I had a radical hysterectomy. My oncologist came back with the great news that I was cancer-free and they were able to get clear margins. I celebrated...for a few days. I then began having horrible kidney pain. I went in for another scan which showed that my ureters had been damaged during radiation and were closing up. I had to have stents placed on both sides, which was the most painful procedure I had to go through to date. Because I was still healing from the hysterectomy, they couldn't do the surgery to repair my ureters. I had to live with the stents in for three long months. I couldn't walk more than a few blocks without being in pain. My ureters would spasm and I was taking multiple Percocets a day just to try to be able to function. I went to the ER 4 times in horrible pain, (yes, I was that woman screaming in the ER, begging for someone to help me). Each time they said, "Everything is normal, you just have to wait until your surgery." I cried A LOT between October and January.
I finally had the surgery to reconstruct my ureters and bladder on January 19th, 2017. I was told I could lose my bladder function and may need a urostomy bag. I was so scared. This surgery was scarier to me than anything else. Thankfully, the surgery went well and after living with the stents for another 4 weeks and a catheter in for 3 weeks, I was finally able to start to feel more human and normal in February 2017. I returned to work part time in March 2017 and went back full time in April 2017.
How I felt after treatment: I feel thankful, but scared. I had anxiety before all of this and now it is through the roof. I am constantly worried about the cancer coming back and having to go through this ordeal again. I am not sure I have the strength to do all of this all over again. I hate all of the scars I have on my stomach now. Also, because I went through menopause, I had to grieve the fact that I wouldn't have any more children. I felt guilty for wanting more kids, even though I have two wonderful ones. But I had a very wise counselor say to me, "The amazing thing about humans is that we can feel grateful and sad at the same time." I am still dealing with the loss of fertility. However, I am starting to work out and have gone back to work. So I am slowly, slowly getting back to normal.
What was most difficult for me: Many things were difficult for me. I was (and still am) so worried about my kids, who are now 8 and 10. I don't want to leave them. It was also difficult for me to not know any other younger cancer patients. In every support group I went to or when I went to chemo or radiation, all I saw were much older people. They didn't have to deal with the same things I was dealing with like kids, a job, etc.
What I did to help myself: In my darkest moments, when I was laying on the floor in pain, or when I was sure that none of this was working and that I would die, I focused on my children. I knew I couldn't give in because of them. I had to make it through and stay around for them. If it weren't for them, I may have given up.
I also started dating a wonderful man after my treatment was finished, but before the hysterectomy. When I found out I had to have the hysterectomy, I gave him the chance to walk away with no hard feelings. He stayed. I had to allow myself to be loved and to trust that he would be there for me. Having him there made things so much easier for me, because he was so understanding and helpful and loving. I sometimes feel I don't deserve to have this amazing man in my life, but I am convincing myself each day that I do!
Where I am today: I hate when people say, "This is your new normal." I don't want a "new normal." I want the old normal! I want to be back to not thinking about cancer all the time and being able to walk up a flight of stairs without getting winded! I feel like I am on my way. I don't think about cancer all day, every day now. I think about it a few times per day, and I hope that I will begin to think about it less and less the farther out I get and the more clear scans I get. I am back to work and back taking care of my kids. I have realized that I don't want to be stressed out and resentful at work, so I have switched jobs within teaching to something that I enjoy more. I have realized that enjoying every moment is so important (as cliche as that is!).
In May 2017 I had my first clear pap, 6 months after my hysterectomy. In October I had my 1 year PET scan, which came back clear. I started celebrating my 1 year cancer free anniversary. Later in October I had another PAP which showed ASCUS (atypical squamous cells of unknown significance). My oncologist did follow up biopsies on 4 lesions on my vaginal wall and the results were that I had VAIN II (Vaginal Interepithelial Neoplasia). These are precancerous cells of the vaginal wall, caused by HPV. Mine were at Level II, Level III is considered stage 1 vaginal cancer. I began a four week treatment course of Imiquimoid, a topical chemotherapy drug, to see if the lesions would respond. I just got he results back that one of the lesions is gone and the others are responding to treatment. I go back for more biopsies on Jan 26th 2018. The VAIN will most likely continue to reoccur, since I still have active HPV. My body's immune system is not recognizing the HPV as something that needs to be fought off, so it will continue to cause issues and abnormal cells for me. This is something I will have to continue to deal with and have checked on a 1-6 month basis for the rest of my life. My oncologist has also given me the HPV vaccine as a trial to see if it will trigger my body's immune response to recognize and fight of the HPV, but the research on how effective this is is still very minimal. The HPV vaccine was not available when I was a pre-teen, but my daughter is about to turn 11 and we will be getting her the vaccination as soon as we can.
How I will try to help others: I want to be able to connect with other younger women who get this diagnosis. No one can truly understand what we are going through without having lived it ourselves. I want to give strength and hope to other women through my own story. I want other women to know that they should listen to their body and their instincts and not be afraid to advocate for themselves.