Many of you who follow me on social media or who are friends with me in person know bits & pieces about what’s been going on in my life the last year. A handful of people know all the details. I have not felt comfortable sharing this at all for almost an entire year. It has been extremely difficult for me to wrap my brain around and I have felt all sorts of feelings. From guilt & shame to anger & confusion. I’ve been downright sad too. I wasn’t sure I’d be able to ever talk about this all, much less blog about it but lately, I have felt compelled to spread knowledge about it all. None of this is my fault and it is what it is at this point.
I think it literally has taken me this long to accept what’s going on. I have an appointment in a couple of weeks that has also been heavy on my mind & heart. I tend to process things for a super long time, internalize things and deeply analyze everything. I think with the one year mark looming over me (next week) and this upcoming appointment, my brain has started to focus on this more again and prepare for the different things that might happen at my next appointment in two weeks. I decided to post something on social media about this last week on my birthday. It was surprisingly therapeutic & freeing. I felt like my secret was out for the world to know. I didn’t feel shame but rather a huge weight lifted off me. Cancer is nothing new to me. Those of you who follow my blog and went to high school with me know what I’m talking about. There have been more kids from Tartan and Oakdale sick with cancer than I’d care to count. It’s sickening.
So here is my story to date:
July 11, 2018 … I went to my regular every three year Pap smear appointment … never have missed a gyno appointment. My last one checked out perfect when I was 27 so not a single thought in my mind was expecting something to be off. The physical exam went well and visually she said everything looked great and I was on my way. Pap results take about a week to get. Usually, they mail the results if they are normal so I knew something was up when I got a call from a nurse a week later. She told me over the phone that my pap was abnormal (which she said happens all the time) and another shocker, I tested positive for HPV. I think my jaw hit the floor. I knew very little about HPV besides that I received the vaccine when I was much younger. To me, it sounded like a super scary std. I was more concerned about this news than the abnormal pap at this point. After doing some heavy reading and research, I realized HPV is extremely popular. The CDC claims that nearly all sexually active men and women get the virus at some point in their lives. Most people won’t ever know they have it because there are not many symptoms, most people clear the infection on their own and it typically never turns into anything more. Even couples in a monogamous relationship can contract this. It doesn’t mean someone cheated either. It can lie dormant in your body for years. There are different strains and this first nurse told me I didn’t have the cancer-causing kind – at least that’s what I remember hearing … I was in a state of shock I think on the phone. So I was trying to tell myself that this would be nothing and my body would clear the infection on its own. I had to schedule a colposcopy for August 14, 2018. I was terrified. Basically, this is an in-depth Pap smear where they use iodine to stain your cervix to see abnormal cells with a colposcope. My plan was to tell them I did NOT want any unnecessary biopsies right now. I read online not everyone needs biopsies at these and I was going to suggest waiting a year and re-Pap smear test to see if I cleared it on my own and healed. I felt confident with this plan as I went into this appointment. I read a lot about doctors over biopsy’ing and I really don’t like a lot of Western medicine practices. I tried explaining this to the nurse when I got there and she told me the doctor I have is pretty aggressive and biopsies 99% of the time. Urgh. I talked to the nurse and doctor and decided I would be “open” to doing a biopsy once she had looked inside and could confirm it was necessary. I thought it can’t be that bad. I can do this.
The speculum is the same and the iodine made me feel a slight burning sensation. I get grossed out of blood and medical stuff really easily. I was trying to remain calm. She was thinking it would be CIN1, which is very low grade and nothing to worry about right now. My Pap results only picked up something slightly abnormal. The doctors started the exam and told me it looks “awful” on the outside of my cervix and she’s certain it’s CIN3 and she’s going to start biopsying … mind you I’m lying in this sterile room with someone examining my most private parts and I’m trying to process what the fuck she just said. I was so caught off guard here. Then she starts taking pieces of my cervix out … 5 biopsies in all and large ones at that. I was so mortified and almost passed out … they went running to get me a cold rag and orange juice which I dropped all over myself because I was shaking so bad. Each time she took a sample I got these absolutely insane waves of cramps that took my breath away. Add on the nauseous feeling and tears and it was a mess. I felt like I couldn’t even hear what she was saying, everything was foggy & muted. She said when we get the results from this we will know what my plan will be. She started talking about how a hysterectomy could be an option … that’s when I just started sobbing … like what in the actual fuck. My mind was not mentally prepared to hear all of this today. I was bleeding from these biopsies and dripping out coffee grind looking things that they used to cauterize it. I went home and could not function. Like for real. I was sobbing non-stop for at least 24 hours. It was BAD. Every type of thought was racing through my mind. I was sore and had cramps too. It was a really rough few days.
Sure enough, she calls me a few days later (longest wait ever) and says it was indeed extreme CIN3 and she wants to take it out immediately because a large portion of my cervix was covered in these cells. CIN3 is also referred to as stage 0 cervical cancer. If left as is and untreated it’s almost guaranteed at this stage the cells WILL invade inside the cervix and spread quickly turning into higher stages of cervical cancer that can kill you. Considering my last pap three years ago showed nothing and visually a month before at my Pap appointment nothing was spotted with the naked eye, she was really concerned that it could be aggressively multiplying.
At first I didn’t like this doctor because she was sort of sarcastic and I just don’t do well with people like that. I need more nurturing and loving people. After the colposcopy where I was sobbing she even told me in a “joking” way that I need to stop crying because I made her late for her next appointment. That rubbed me the wrong way. After having time to think about it though and discuss with my mom and some friends, I realized that I really don’t need to be her best friend or think her humor is funny. I need her to save my life. I need her to make medical decisions that help me get rid of this monster. I also spoke with her in detail on the phone one day and she blew me away with how smart she was. That’s certainly a quality you want your doctor/surgeon to have. She admitted she was aggressive in her approaches but she also boasted that she has the best survival rate out of all the doctors on her team. I trusted her at this point and felt the most comfortable proceeding with her because she knew me and my history by now. I decided to stick with her.
The plan was to have a LEEP procedure on October 3, 2018. LEEP stands for Loop Electrosurgical Excision Procedure. During a LEEP, a thin wire loop is used to cut out the abnormal tissue. Your cervix is then cauterized to stop any bleeding. It usually heals in 4 to 6 weeks. I had to wait about a month and a half at this point and that was REALLY hard for me. The “what ifs” constantly bombarded my thoughts. I joined some Facebook support groups so I could read about other women’s experiences. This was sometimes helpful and sometimes it made things much worse. There are some really scary things online and you have to take everything with a grain of salt. I ended up having to stop following and getting updates because it was really messing with my mind to read about this constantly. I stayed in the group though to be able to only use the “search” feature to look up certain things. The days passed slowly but surely. It was finally LEEP day.
My doctor prescribed me a Valium to take before this procedure because of how things went last time and how high my anxiety had been about this all. I woke up early and took that and got ready to tackle yet another obstacle. Alex brought me to this appointment and I am really thankful for him. I kept waiting to feel like this over the top calm from the Valium but never did. I will say I think it did work though because overall I felt more at ease. I did not have to be put out for this. They numbed it and honestly that shot hurt quite a bit and then I got that rush feeling. I decided to bring my headphones for this appointment and made a special playlist. I told them I didn’t want to talk or hear about anything until they were done. That would help me not pass out. At the biopsy, appointment she even offered to take my cell phone and take a picture of my bloody cervix for me. UM, NO. JUST NO. There was a machine hooked up with the LEEP wires. When they turned it on it was pretty loud. There happened to be a student nurse there that day. Bless her soul, she ended up holding my hand during the procedure. I turned my music up insanely loud and just sobbed the entire time. It didn’t take that long and the numbing shot really helped the pain. I would say this was MUCH BETTER than the colposcopy & biopsy procedures. She ended up taking 1/4 of my cervix out that day.
The biopsies were larger and thicker than the colposcopy ones. We would be able to see how deep it was and if my margins came back clean. If so, that would mean she got it all out. I had an appointment in another month where I would get these results. So back to the waiting game it was. If you haven’t read my Anxiety post, you should. This is about the point in time where my life went haywire. I really lost my shit and felt so fucked up from this all. I tried anxiety meds and that was horrible. I just didn’t know what to do. What to think. Who I could confide in & talk to. The physical healing was pretty rough too. It took a full 6 weeks before I felt near normal.
Over time I began healing mentally and physically. I was slowly returning to my old self. One day I got to thinking that there really is not a whole lot I can control right now with this, but I can control my diet. So I started researching the Alkaline Diet and reading about how foods can kill cancer. I went kind of balls to the walls with this for a while and then slowly backed off. I would like to go hard on this again actually. I just think we can do a lot with our diet and even our minds to create a stress-free healthy environment in our bodies where cancer can’t survive. I prefer more holistic approaches and this was something I could do on my own.
Anyway, I had my follow up with the doctor and got my results from the LEEP procedure. MY MARGINS WERE CLEAN! She confirmed that she got everything she possibly could, which was a lot. Now it was up to my body to start producing normal healthy cells again. She said this took time. I would need to wait until next July to get checked. This would ensure an accurate reading because of the amount of time. URGH. Just what I love … looming appointments and long periods of time. NOT. She checked how I was healing from the LEEP and she said it was healing the way it was supposed to. Apparently, sometimes it heals towards the outside which creates scars but mine was turning inside which was good. ALSO! It had NOT spread inside of my cervix based on the LEEP results. THANK GOD. This was really good news. I got all GOOD news. I felt REALLY blessed that things were looking up.
I went on living my life this past Spring and really trying not to obsess over this. I feel like I am at a place where I have accepted this all. I am slightly nervous for the appointment on July 23rd but I know it’s out of my hands at this point. I am praying that everything comes back normal. My doctor did tell me though, and I quote, “this is something that will haunt you the rest of your life”. She said that she sees it a lot where at the one year point maybe a woman gets a normal pap but then again in another year it’s abnormal again … it can go back and forth and will most likely be something I am always worried about and watching. Once I know the results then we can make a new game plan. It will probably be like this for a while … watch, wait, test, come up with a new plan, repeat.
Now that this news is out there for the world to see, I will be more public about updating you all on my status. Everyone’s story and journey is different with this disease. This is only my own experience and thoughts. I know there are people struggling far more than what I have dealt with. I also want to add that I’m very thankful for things throughout this journey too. I have a job with excellent health insurance so I never had to worry about that piece. I’m thankful for an amazing doctor and science. I’m also thankful that women’s preventative care is easily accessible. I’m grateful that it was at stage 0 too. Had I skipped that appointment, there’s a very good chance things would not be looking so optimistic for me. It’s good to keep it all in perspective but also cut yourself some slack. There is no right way to deal with this and navigate these waters. I ask that you don’t skip your preventative care appointments … even if you prefer a more holistic approach to things, it’s still important to know what’s going on inside of your body. If you have struggled with anything similar please reach out. I am finding it to be really therapeutic to talk to others who have been in this position. There’s something really taboo about this subject, especially hpv, and there should NOT be. I think it’s really good to start talking about this stuff with one another!