It’s been two years since my life suddenly changed forever. It only takes one small moment or experience to make a huge impact on your life. Two years ago I was really sick (more on that later) and spent a month and a half trying to figure out what was wrong. After 2.5 weeks at Northwestern Memorial Hospital, I received the diagnosis of neuroendocrine cancer (commonly referred to as NETs, neuroendocrine tumors) with a primary tumor in the tail of my pancreas and metastasis to my liver with innumerable amount of tiny lesions all over. NETs is often difficult to diagnose and catch early because often times there are no actual symptoms (even in blood work) until the disease is advanced. I was lucky to get a diagnosis within weeks at the hospital.
Wait, what!? I’m 38, I’m too young, this happens to other people, I’m active and I eat healthy. How did this happen to me? I felt shame, embarrassment and a fraud for getting sick when I am the one teaching about health. These were some of the thoughts running through my head. To be honest, my mental state was so far off at this point that I didn’t have the brain capacity to really comprehend what was happening. Looking back I felt numb hearing the diagnosis and was somewhat unreactionary.
My journey is something I have wanted to share for a while now. In the beginning it was still too raw and I was processing my emotions and learning to live with my new condition. Then life got busy with two toddlers and endless doctor and wellness appointments. I made the decision that the most important use of my time was #1 my health and #2 my family and friends. Anything else had to come after. I lived by that as a code and still do today.
I feel ready to share. I hope I can help others out that are also going through difficult circumstances, whatever they may be.
I had never heard of neuroendocrine cancer as it is rare. So I am sure most of you are unaware of it as well. It’s extremely complex because it involves your endocrine system and the cancerous cells behave differently than most common forms of cancer. It took at least 6 months of research just to get a good understanding of NETs. My family really helped me with this as I was afraid and so guarded to read about NETs. My mental state was so fragile that I didn’t want to do anything to jeopardize it.
Neuroendocrine tumors are cancers the begin in neuroendocrine cells. These cells have traits similar to hormone-producing cells. There are NETs that grow slowly and there are NETs that grow quickly. Thankfully my NETs is low grade with a KI-67 of 6% meaning the cells divide at a 6% rate. Some NETs release hormones and some don’t. We are called Zebras because the disease manifests in completely different ways in everyone. My NETs release ACTH which is the predecessor to cortisol. So I have off the charts high ACTH and cortisol levels that cause a whole other host of issues. The high limit for a normal blood cortisol level is 15 and mine is at 90! NETs don’t always cause symptoms or give you any signs which is why most of us are diagnosed after metastasis. In order to get a diagnosis, blood work is needed, a PET scan and biopsy of the cells. There are various treatment options that are unique to NETs and also medications to control the growth and excess hormones. Technically, there is no cure for NETs, but I like to say NOT YET!
When I became symptomatic it was extreme, very traumatic and I truly suffered. My first symptom was mild abdominal bloat and then difficulty sleeping. It started off where I was waking up at 3AM every morning. I had just finished breastfeeding Alana and chalked it up to my hormones adjusting. In the beginning I was able to go back to sleep, then I quickly escalated to full blown insomnia. If I did doze off, I would wake with a jolt in a pool of sweat. And when I say insomnia, I’m talking a big fat zero minutes of sleep. With cortisol levels that high, it was like I was being chased by a pack of lions ALL THE TIME! Anyone who knows me well knows that I love my sleep and always was a good sleeper. So this was difficult for me. I also developed extreme anxiety and paranoia (hello cortisol!). The anxiety was so extreme I had burning sensations down my arms and back. I am a very laid back person and never had experienced anxiety before. I couldn’t make sense of it and thought maybe I was going through a midlife crisis and stuck in an anxiety loop. It got to the point where I felt like an empty shell of a person looking in on my life and the people in my life. Physically, I lost over 20 lbs, lost muscle, lost hair, grew facial hair, developed smelly sweat, broke out in little bumps all over my face (all thanks to cortisol). High cortisol levels also cause your face to bloat so on top of it my face was blown up. Before I was admitted I could barely walk up the stairs and I certainly could not pickup my 1 year old daughter. I had to let family and friends step in and help. There is nothing harder than feeling like you can’t be a mother to your children. The high cortisol and insomnia affects your mental state and does some really crazy things in your head. Before I was admitted I started hallucinating things. The hallucinations were dark and still make me feel uneasy, although it is better now that time has passed and that I understand it wasn’t me, it was the hormones. It’s pretty scary what hormone imbalance can do to you!
Over the course of a month and a half we were in and out of Central DuPage Hospital ER and never got admitted. We also were desperately trying to find and get an appointment with an endocrinologist that dealt with cortisol. If they did deal with cortisol, most of them didn’t want to my case. We weren’t getting any answers and something more had to be done. One day it got so bad that I told Craig and my mom I thought I was dying. That day they decided I needed to go to a big hospital in Chicago. Craig packed me a bag and my mom drove me to the ER at Northwestern Memorial. It was there that I ended up with a great team of doctors that were finally able to give me a diagnosis and stabilize me with medications. The medications are something I am so grateful for in life and it took me a while to get to this point. I literally never took medicine, not even Ibuprofen for a headache. Taking a lot of medications right now was really hard for me. One of the drugs I’m taking blocks my cortisol receptors so I don’t feel the effects of my high cortisol levels. Without it, I wouldn’t be able to live.
I never could have imagined something like this or thought I could endure it. I’m so thankful for all my family and friends who supported me during this time and didn’t let me quit. I was blown away with the outpouring we received from others, meals, snacks, crafts and toys for the kids, flowers, books, blankets, robes, comfy clothes, money, gift cards. It made me realize how good and thoughtful and unselfish people can be. There were so many who truly empathized with me. It made me stop and think , would I have done this if the tables were turned? I don’t know, but I do know that now I am more caring, compassionate and giving person who truly empathizes with others. A cancer diagnosis can be scary and if you let it take over your life, it will. There is a lot of learning and growing that can happen if you choose positivity and joy everyday. I’n not perfect and some days, weeks or months are hard. But no matter what, I try too stay grounded. With the help of my family and friends, I am constantly uplifted. As the sun rises each day I have a fresh new start and it’s my choice if I want to stay centered in positivity or let myself fall to self-pity. Most days, I choose JOY.