I never saw it coming...
My journey began at 20 years old, as I was unexpectedly diagnosed with an extremely rare, highly aggressive form of grade-3 germ cell ovarian cancer.
Prior to my diagnosis, I had been struggling with chronic urinary tract infections (11 in 8 months to be exact), kidney stones, and abdominal bloating/pain. Most of my breaks during my sophomore and junior year in college were spent in the operating room, in attempt to fix all of these ailments. In between the scans and testing procedures, my urologist discovered what appeared to be one benign dermoid ovarian cyst. From there, I was referred to a gynecologist to get everything checked out after the urology issues were handled. What we found is that one cyst quickly grew to three cysts. However, I was reassured that these dermoid cysts are very common and harmless in girls my age. Five months later, it was time for my next ultrasound. I was devastated to discover that the dermoids had grown quite a bit larger and would need removal to prevent twisting and rupturing, which can be life threatening. My gynecologic "team" agreed that it would be reasonable to wait until Christmas break to do the operation, giving me time to complete the semester as well as time to recover post-op. With this agreement, it required me to go to the hospital each month for ultrasounds to make sure the dermoids were not growing too large to the point of needing emergency surgery. Each month I went in, the larger they grew, and the more serious the conversations got. However, the conversations NEVER revolved around malignancy, but around loss of fertility and hormone function at my age. I signed waivers for consent to allow removal of my ovaries if they got into the surgery and needed to do so in order to retrieve the dermoids. Being 20, this really messed with my head and my heart. Over the course of the semester, I made peace with the situation and placed my fertility in God's hands. Ironically, in my anatomy course, we were assigned a semester long research project of our choice. Of course, I chose dermoid ovarian cysts for mine. After studying the pros/cons of laporoscopic (four small incisions) vs laparatomy (open surgery), I opted for the crazier of the two. By choosing this, I knew that I would have a cesarian section-like cut as well as longer recovery time and more bleeding. But I truly believed that God instilled something within me that told me it was the right thing to do.
The day I had been waiting for all semester quickly approached. December 12th I went in for a standard bilateral ovarian cystectomy. I was pretty use to surgeries by this point, but had serious fear of waking up from the operation without my ovaries. That afternoon, the anesthesia wore off and I remember waking up to my lovely surgeons face, telling me everything went GREAT and much better than expected. She continued to share that the surgical team was able to save some of each ovary and the (baked potato-sized) dermoids were completely removed. This amazing news made the pain a lot more bearable.
I spent the next four days in the hospital gaining strength back. Once I was dismissed, my parents and I went to a local hotel, as we were five hours from home (and there was no way I was riding in a car for that long, I could barely tolerate being in a wheel chair around the hospital). I ended up getting very sick post-op with a candidiasis infection of the mouth called "Thrush," as well as 30+ canker sores lining my throat. My weakness grew quickly, as I was not able to eat much, nor stomach the pain medications prescribed.
A few days later we made the trek home. What was suppose to be a five hour trip turned into a seven hour travel of misery. Being the optimist I am, I kept telling myself "it can only go up from here." Buuuuut that little game didn't last too long before another obstacle was placed in my hands. When we finally got home and settled in, I went to the bathroom before lying down to discover that I was urinating blood. I brushed it off as probably something that typically happens post-op and kept it to myself. However, the bleeding continued for 36 hours and by that point, I had nothing left in me. The minute amount of strength and energy I had left was diminished. I felt limp and gray. By that point, I knew I had to quit lying to myself that everything was okay - I knew it was far from it. I contacted my surgeon and she (being five hours away) requested I go to the ER immediately. The emergency room staff ruled the bleeding as result from passing a kidney stone. Though I wanted to believe that's all it was, I knew in my heart that it wasn't the case. I had passed kidney stones before, and this was much different. They sent me home with some different medications to take, but the bleeding didn't stop.
It was December 19th, seven days post-op. It started off like the days prior, thrush medication, any sort of liquid I could stomach, and lying on the couch. Most of the morning was spent in pain, but I was still playing the "it can only get better, right?" game. Little did I know, it was about to get a whole lot worse. I was waiting to hear back from my surgeon to see what she had to say about the fact that I was still urinating blood. I did anything I could think of to lift my spirits. Jeremy came over to watch Christmas movies with me to make it feel more like the Holidays. I had fallen asleep peacefully, so he left to go get some stuff done while I rested. It was one of those naps where you fall asleep to a bright sky and wake up to it being gray and getting dark. You know, the ones where you're totally disoriented with what time it is or where you are? Yeah, one of those. I woke up to a voicemail on my phone from an unknown number. I gave it a listen and discovered it was my surgeon calling from her cell phone. "Oh nice" I thought, "She's probably just giving this to me so I can stop bugging everyone at the nurses station in the hospital. What a sweetheart." So I gave her a call back. I was walking into the kitchen to turn some lights on and get a glass of water when she answered. "Hey!" I said, "Sorry I missed your call I was finally able to nap and apparently fell asleep pretty hard." I was waiting for her to ask if I was still bleeding or how things were going. But instead she asked me if I was home. "Yep!" I said. She proceeded to keep expressing how sorry she was that she is so far away. (Again, I'm thinking she feels bad I'm having complications that she can't help with). Then my surgeon told me that they had gotten the pathology report back. I don't know why I was so utterly oblivious, but I still thought the sadness in her voice was about either the blood or possibly something affecting my fertility. She just kept apologizing and I just kept saying "it's okay!" It got to the point where she had to blatantly spell it out: "They reviewed the report multiple times, as they were extremely shocked to find an unexpected malignancy in the teratoma we removed." She went on and on, but that is all that I heard. My hands involuntarily shook so vigorously I couldn't even hold the phone up to my ear. I just kept repeating "okay.." "okay.." "okay.." as I tried to hold back the tears and hold my life together for a few more seconds before it completely fell apart.
Cancer?! How could this be?!
My attempt to hang up the phone failed miserably as my fingers couldn't find their way to the red "End" button due to the haziness, as my eyes swelled up with tears. I then started to repeat "I have to go" over and over. My surgeon wanted to further explain what they found and what my next steps were but I could not bare to hear any more. No one was around. The lights were still off, and the sky was only growing darker. I found my way to a corner in the bathroom without even realizing what I was doing. My inner child curled into the fetal position, as if that would bring me back to innocence and purity and out of the nightmare I was just brought into. The first person I called was Jeremy. There wasn't any answer so I called back again and again. When that attempt failed, I called my dad. The worst part about the situation at this point was that I had to be the one to tell the people I love. How I was going to find the words was beyond me, but I made the call anyway because I couldn't stand to be alone. I needed someone around to convince me it wasn't just a bad dream. My dad answered. I couldn't breathe, let alone speak. He demanded to know what was wrong and for the thirty seconds following his question I refused to say a word, until it came out like word vomit,
"I (deep breath to gain composure) Have (another deep breath) Can-cer."
On the other end I heard the devastation and disbelief when he replied "What did you just say..?" So I repeated myself, this time much clearer, "I. Have. Can. Cer." All my dad said after that was "I will be right there." I don't know if he flew home or if God transported him by the speed of light, but it felt like two seconds between hanging up the phone and seeing that kitchen door fly open to reveal a figure standing there, looking like a puddle of tears and sorrow. Before I knew it, we were both lying on the dark bathroom floor. The sky was completely dark, and the only thing I felt was my tears meet his gray sweatshirt as his arms were wrapped around me. That is when I knew. I knew that this was something only God could heal. My own father, the man I've looked to my whole life as the one in charge, the one who fixes things, was now on the bathroom floor, also in the fetal position, praying out loud, "God wash this heartache away from us." I had never seen him so vulnerable, nor so broken. Even his strong and loving arms couldn't make me feel safe. That is when I turned to a rock much higher than any human hands.
By that evening, my family and I were all gathered around my kitchen table. They had traveled home, not for Christmas, not for any holiday party. We were brought together by devastation and heartache. In that moment, no words could express the fear we all felt of the indefinite road ahead.
The days following my diagnosis had plenty of dark moments. Christmas Eve morning was spent going to my first oncology appointment with my family. We had no idea what we were going into or what my prognosis would be. It was no surprise that it was only the first of many appointments scheduled in order to explore all angles, opinions, and options. However, no matter how far I had traveled or how many gynecologists I saw, nothing felt right. Before I knew it, I was faced with two battles: placing my fertility on the line AND cancer.
From that point on, I was in and out of fertility appointments being asked to plan for my future on the spot - if I was lucky enough to still have one. In between every thing, I tried to learn about my diagnosis. I prayed to God for the guidance and the strength it would take to follow out His plan for my life, rather than my own.
It all started with a book called Cancer Killers by Dr. Charles Majores, which was recommended by a family friend who experienced healing alternatively from cancer as well. From page one, I was hooked. I finished the entire book in one day (which is a record for me) and began researching like a mad woman. My days were completely consumed with cancer. Do I follow protocol? Do I try chemo first? Surgery first? Do I try chemo AND nutritional methods? Do I try nutritional methods only? I didn't know what I was going to do, but I knew that freezing eggs, a partial hysterectomy, and extremely intense chemotherapy regimen were not my first (nor my only) option even though I was given that impression.
The further I explored, the more Alternative or Integrative Cancer Centers and therapies I came across. Being slightly OCD, I made many spreadsheets, color-coating pro's vs con's of each holistic center. I made numerous phone calls, speaking with nurses and doctors, discussing what they could offer.
One center specifically stuck out to me, as my phone call with them gave me my first giant ray of hope since I was diagnosed. Dr. Murphy at an Oasis of Healing was the first doctor to speak to me as if I would be able to fight this and keep my health, youth, and fertility. He made me feel supported no matter what my decision would be and hopeful that we could beat this - together.
Before I knew it, my family and I were around the table, discussing how we were going to make it work. That is where the blog originated, as a means to both make alternative treatment possible (as it is not covered by insurance) and also to share my journey with others. To inspire cancer patients to advocate for themselves, however they choose to heal.