What REALLY Has Been Going On! Life + Cancer Update
When I was first diagnosed with stage 4B Low Grade Serous Ovarian Cancer, God placed it on my heart that I need to be open, transparent, and share my battle with the world. For almost 4 years, my life has been an open book. You have seen all the ups, all the downs and pretty much every moment in-between. I have always said this since day one, back in 2016, at the age of 23, that cancer was a blessing in disguise because it brought me closer to God, brought me closer to my husband, helped me rediscover who I truly was, and gave me a platform where I have been able to connect with you and other amazing people from all over the world; but even though social media has been a blessing, for me, the last 2 years have been extremely draining and light dimming.
For the past month, I have been silent when it comes to posting on my instagram feed, I do still stay somewhat active on story, but other than that, I’ve been silent. For the last almost 4 years, I have given everything to social media and the world. I’ve let everyone in on the hardest time of my life and my families life. I have used my voice and platform to help raise awareness for Ovarian cancer and my biggest goal was to hopefully help someone not feel so alone when going through cancer, like I did when I was first diagnosed. I knew God had blessed me with this platform for a reason but after I beat cancer the first time, I felt my entire purpose and life shift. I felt like once I beat cancer, I had to be this “fitness chick” and I had to become a fitness “influencer”, I mean I was labeled “the bodybuilder who is battling cancer” from the media, from society and even from myself. Fitness was no longer enjoyable and it was no longer an escape for me.
When I found out the cancer had returned and I was back in the battle for the second time now, I wasn’t prepared for how mentally tough this battle was going to be. Honestly, this has been the hardest battle of the two and I was the sickest and at the worst, the first time. I was trying so hard to still be a presence on social media, still trying to show up for all of you, and was trying to force this “fitness chick” brand/business, that was literally making me sick, mentally and physical. I found myself setting unrealistic goals for my body and developed a really bad fear of food. I had many break downs about food and was afraid that whatever I was eating would make the “cancer grow”. Then I had the pressures from social media and my community of always keeping everyone in the loop about every little thing that was happening in my life, especially when it came to cancer.
I couldn’t breathe anymore. I felt suffocated. I felt trapped. I wanted and needed an escape from everything and everyone for a bit. I needed to focus on me, my own healing, recovery, my own happiness, and own well-being. So I made the choice to just step away. I’ve realized since stepping away that I don’t need to give anyone anything. It was my choice to be so open and it is ultimately my own choice if I want to keep things more private; but sadly, people have a hard time understanding or respecting that. I’ve realized that 98% of my community is understanding and completely respect my need for space but there is sadly that 2% of people who want and demand that they know everything that is going on, right this second. I know everyone is coming from a loving and caring place but it was just too much and I was so unhappy. My energy was drained. My mood swings were insane. I felt like a zombie, just going through the motions of life.
I’m finally to a place where I feel like it is time to come back and share what has been going on the last month.
So here is the update.
On July 13th, 2020, I had my chemo cocktail of Doxil/Avastin. I had my CA125 (blood tumor marker test that is used to monitor ovarian cancer) and I met with one of my doctors. During that appointment, my CA125 levels were up to 324, from 184 the month prior. With a CA125, the normal range is 0-35 so I was very well out of the “normal range” and this was concerning for my doctors, until the saw my leg. Literally the day before, on Sunday, I went mountain biking and crashed, hard. I slipped a pedal going down some pretty rough and rocky cliffs and slammed into the rocks. My left leg and hip took most of the impact and instantly knew something was off. I could hardly move my leg and it swelled up fast. By the time I got home, my leg was now double the size of my right leg and I could barely put pressure on it. My doctor saw my leg and we decided that this CA125 test needed to be redone in 2 weeks because my body was clearly extremely inflamed (which can cause a rise in your CA125) and we wanted my body to heal from the crash. On July 14th, I posted that update on my instagram feed and that was the last post since today. About a week after the crash, my leg was still pretty swollen and sore so we went and got it checked. Your girl had a very small stress fracture in her hip from the crash which would explain the pain, the swelling and the rise in my CA125….ooops.
When I talked to my oncologist (cancer doctor), we had to come up with a new game plan and that was to revaluate my CA125 in a month and no chemo for a month. My body clearly needed to heal and with Avastin, it can prolong the healing process. I was super pumped that I was getting a month break from chemo. After 7 months of intense chemo, my body was starting to show its first symptoms from Doxil, hand and foot syndrome. The heat in Florida made this time around of Doxil, tough. My hands started to dry out and crack. My feet would get blisters from getting too hot from my shoes or even the sand from the beach. I noticed my stomach was becoming more and more bubbly and inflamed. My scalp was extremely tender from chemo even though hair loss was not a side effect, hair thinning was. I just knew my body needed a break to heal and recover.
The first 2 weeks of my recovery were pretty boring. I wasn’t allowed to workout or do too much strenuous activity, so I ate a lot. I had a craving for sushi and think I had it 6 days that week…haha. I noticed towards the end of the week, that I had become extremely constipated and where my ileostomy take down site was, there was pain. I could feel things moving past all the scar tissue from the take down site and oh boy, that is no fun.
By the time August had rolled around, my stomach still felt constipated and it felt like I could have a small block in my intestine, near my take down site. I’ve had 2 blocks before, so the feeling was familiar. My upper abdominal was extended, there was pressure on my right side and it felt like someone had taken a really tight belt and was squeezing it around my waist, right above my belly button. Still constipated too.
On August 10th, I met my doctor. I had my CA125 drawn and a pelvic exam. My pelvic exam went great. They could see and feel the pressure in my stomach, in the upper abdominal, especially when they would press on it. Then the gut punch came. My CA125 had gone up again. It was now at 522. This clearly raised concerns from myself and my doctors since I had been off chemo for a month and my leg swelling was back to normal but I still had pressure and discomfort from what felt like a block in my stomach. Next step, a CT scan with contrast to see what in the world is going on.
That Friday, I went in for a CT scan with contrasts and met with my doctor on Monday, August 17th, 2020 to go over the results. When Kaleb and I were driving to my appointment, there was a sense of calming in the air. I felt at peace and whatever the results said, I knew that no matter what, I was going to beat cancer again.
My results came back as mixed which is a good thing! The lymph nodes that originally had cancer in them (collar bone, groin, and liver) were SHRINKING!!! PRAISE JESUS!! My doctor was super pumped about this BUT we did have some concerning and weird things going on with my liver. My doctor put her hands on her head and started to rub her temples and says “I’ve never seen this with ovarian cancer, very strange what is happening”, and I instantly shifted in my seat.
Over the weekend and all Monday morning, my doctor was working with 2 radiologist to go over my CT scan. From what I gathered, she wasn’t agreeing too much with the first radiologist and felt like something was off, in her gut and got another opinion. They believe that 1) there is some cancer in the liver lymph nodes that is trying to get into the liver (this is what the first radiologist believes) or that 2) I could have a very rare disease where I have blood clots forming in a vein, next to the liver (what radiologist #2 believes and my doctor believes is happening) and that would explain a lot of the upper abdominal pain, discomfort, and extension of my upper abdominal area. Basically my liver is extremely inflamed and all sorts of messed up.
So what’s next? I’ll be getting an ultra-sound next week of my liver and veins near my liver, to see if I do have a very rare disease called Budd-Chiari syndrome, if the lymph nodes near the liver have cancer in them or if something else is going on. I also am still off chemo until we figure out this good ol’ liver. To be honest, I have a big gut feeling it’s this weird syndrome thingy, but whatever it is, I know that I will beat it and I will be a 2X Low Grade Serous Ovarian Cancer Survivor. God will get me through this, just like He did before—He will do it again.
I want to thank you from the bottom of my heart for all your support with my battles with cancer. I don’t want you to ever think I quit on you. Cheyann and quit/quitter are things you will never hear or see, I don’t quit, ever. I just needed a breather, a much needed breather. I finally feel like I’m at a place of joy, strength, courage, and peace. So many things have changed over the last month and I’m excited to start opening myself back up to you and my community, sharing my life, my journey, and everything else in-between.
It feels good to feel like me again. It feels good, to feel good. It feels good, finally being free from all the darkness and it feels so good, to finally see the LIGHT again.