Lessons

5 years ago I was diagnosed with a rare blood cancer. After having worked for over 10 years with kids battling cancers, my diagnosis hit different. I had watched their battles, been with some as they lost their battles. I celebrated with those who‘d come out through the flames and watched how badly those flames burned. The sicknesses of the disease and the systems built around the disease are devastating. No child should face death, and no child should face red tape because of systems that put money first. As an advocate you keep your head up high beside these kids battling. Like a soldier guarding royalty, you stand tall to remind them who they are, that they are mighty. You love them so much that they can lean on that love. First and foremost you stand tall, as a mirror for them that shows them they’re pure giants. This is important because of all the fear these kids face the second they’re diagnosed, from understandable fears of their parents to fears in the eyes of strangers passing by. If they’re lucky enough to have healthcare personnel with windows for eyes instead of mirrors, they’ll often face the fears of those people as well. These kids aren’t just met with a diagnosis, they’re met with the fears of everyone around them. Imagine entering into such a fight when all the noise around you is rooted in fear. Having to be your own hero is hard enough. Doing it while everyone around you is scared, especially the ones there to protect you, can be nearly impossible.

Standing tall beside kids battling isn’t being a hero for them, it’s reminding them that they’re the heroes. You stand tall beside them to absorb the fear from others coming at them, almost like a dog would do. Being their dog was more important to me than anything I’d ever done.

Initially the oncologist narrowed my cancer to 1 in 4 leukemias. The doctor hadn’t explained any of the possible forms in detail but said that of the four, the one that was the worst (in his opinion) was the least likely. The night before my official diagnosis I researched each one. Every possibility played in my head and I couldn’t sleep. The appointment was at 7:30am and I had spent the entire night staring at the ceiling, scared. Suddenly at 4:20am I sat straight up in bed and look to my right at something there that I could feel. It was like staring at an old friend that only I could see. It told me everything was going to be okay. Really okay. That my story would be on tv and would help other people, and I got it. I felt that and understood it immediately, like directions from God. I laid back down and slept like a baby. The next day I was so happy. I strutted in there and even struck a pose with a huge smile on my face for my oncology ID. That message changed everything. I believed it in every fiber. I heard it in the deepest feeling. In that place where you giggle, like ears in your stomach connecting every part of you.

That day the doctor diagnosed me with the form of cancer he had previously described as the worst. As he explained it he was quoting wikipedia ( I knew this because I had stared at the wikipedia page the night before for maybe an hour trying to understand the intensity of it) and said that I’d have 3–5 years and could never have kids. I left that day on chemo. I posted on social media that I was diagnosed and said I’d be fine, and not 3 hours after a local news anchor I had worked with to promote funding for children’s hospital called me and asked me that very day if they could follow me every month for one year. They’d call it Courtney’s Journey. I was expecting her call.

Looking back, the doctor wasn’t scared because he was knowledgeable about my diagnosis. He was scared because he wasn’t. It was the most under researched, therefor to him it was the worst. To me though, under researched meant that maybe I could figure it out within myself. They wanted me on chemo every day for the rest of my life, but I only stayed on it for 2 months. One night I went to a friends house when especially depressed. The chemo had given me open sores in my mouth and face, had taken away my energy and very important parts of my humanity that I couldn’t pinpoint, and I was dying on it. At one point my friend looked at me mid conversation and said, “I’m really surprised you’re doing chemo. Just, Courtney Hodges wouldn’t ever have done that so quickly.” Looking back it’s almost like he wasn’t the one saying it. He was just there to be an ear and was talking about his own personal things before he stopped to say this. The way he said it was emotionless, like a message, and he just kept on going with his story. That stuck. I quit chemo the next day. This wasn’t my path and all I needed among the noise was to be reminded who I am. Just like the kids.

Quitting chemo while doing the news story was a turn and didn’t fit normal narrative. But after I quit chemo the narratives around me didn’t matter. I hit the books. I researched non-stop. I wrote a letter to the best oncologist in the world for my cancer. The only top oncologist for it, because mine is so rare. Especially for a young healthy woman. Most people with this are men between 60 and 80 and mine was especially different because of the blood cells affected. I made google alerts for every word specific to my cancer and read every single study and news story that would pop up. I translated Japanese studies to understand what they did differently. I interviewed people with my cancer. Not being on the chemo cleared my head again. I was given other drugs to deal with the possible symptoms of it that *could occur but I didn’t take them coming off chemo because I wanted my body to get back to balance first. In that time I soaked up everything I could. Before this diagnosis I had been working on kids books night and day. This research had now completely taken over. I had seen 7 oncologists at clinics around the state within 2 months when the top oncologist for this cancer who was at the Mayo accepted me as a patient after receiving my letter. After seeing 7 oncologists Dr Mesa was the first and only one who told me I’d live a normal length of life as long as I remain ultimately unwaveringly healthy and I’d be able to have kids. It took 8 doctors to find one doctor who would tell me I wasn’t going to die and that it wasn’t a big deal and that one doctor was the leader globally in this spec cancer research and treatment. If I’d believed the other doctors I wouldn’t have my son. One of the worst but also prevalent side effects of this chemo all these doctors wanted me on daily for the rest of my life was a secondary form of leukemia. The treatment could have killed me, and probably would have in understanding how sick I was while on it. Further, the first clinic supplying the chemotherapy would have the pharmacy call me every week to ask me what I needed or wanted. Imagine dealing with your own cancer while having drug dealers call you every week to see how you could numb that healing process. If you’re sick, maybe you don’t have to imagine it. You probably live it.

Dr Mesa set me up to begin a trail for a new drug at the Mayo. I’d be there for three months before the first injection so that they could study me by tracking physiology using things like nail clippings, scans, tests, etc. So for 3 months I lived alone in a house belonging to a friends parents. They were gone for the summer and I had the house all to myself. Nobody was with me which was important. It was probably the greatest blessing. For three months I wouldn’t be on any drugs for this and that gave me time to research with a clear head and experiment on myself with natural anticoagulants. Every day I’d drive to the Mayo so happy. It was good being away from people. Not facing their looks of fear and hopelessness because of my diagnosis was freedom to me and that freedom felt good. Really good. It finally felt like health.

One of the first mornings there I parked in the garage and prayed before getting out. I was going to have scans where they had to lock my head down into a cage and I needed somebody to walk in with me that day, so I prayed that God would help me be of service. I wanted that feeling I had the day before diagnosis. That was the path all along, he energy moving me through was the energy I get when I’m of service. I got out and walked into the Mayo toward the elevator. A man who had parked near I me in the garage got in at the same time. I was smiling when we stepped into the elevator. He was angry about something and punched the button. He had been looking at his phone and you could tell he was annoyed. He looked at me and said something complaining about the traffic. I just smiled and said I loved it, that I wasn’t in a rush to get there so the 40 minute drive was nice. I said it was warm in Scottsdale and I was from Ohio where it was getting cold and probably raining. I said the cactus was beautiful and the sunset was amazing. I hit the button for oncology and hematology and he looked so confused. He asked me if I have cancer. I smiled so big for some reason and said yes, then specified, “I’ve got this though.” The man turned from sharp to soft and tears formed in his eyes. You could see he had sized me up as a young person with a lot more time needed and in his view cancer meant no time. I knew this look well. It was fear. But that wasn’t my view. That was his. He looked down at his phone and said he was going back home to talk to his daughter and thanked me. I don’t know why. But I think I helped. That’s exactly what I asked to do. After that I didn’t feel alone.

Every day I went in smiling. On my way to the elevators I’d pass a piano player who I’d sit with sometimes. I looked forward to seeing him every day and listening to him play. He was old and his wife had died there so he played a few days a week for her and everyone entering. It was beautiful. I’d go up the elevator to oncology/hematology and would smile at people waiting for their initial consultations. I’d talk to them sometimes, but not much.. too many eyes mirrored with fear. Maybe I wanted my smile to represent the Faith I felt, maybe it would rub off or remind them who they were. Maybe it’s none of my business to do this. Maybe in a world where Faith is so fleeting it absolutely is our business to share it, if only through a smile. If it’s not our business to share Faith, what is our business?

I’d get messages or videos while there from my kids back at childrens hospital and it always made every hurdle easy. I had the best coaches in the game. They’d root me on. I took two dinosaurs every day in my bag from Reid. Sean would remind me that it’s a piece of cake and I’ve got this. Violet would send a smiling picture with one of her new hats or wigs. My coaches were Giants. I was little but I had giants who had died and been brought back to life cheering me on. After they’d finish researching me I’d go to the Mayo library. I’d stay there for hours every day. Sometimes the entire day. I had nothing else to do and these sample and scan appointments only took an hour or two. The Mayo library had everything. I could go and find anything I needed on blood, nutrients, phytochemical’s, natural anticoagulants, naturopathy as a whole. If there wasn’t something there I could ask and they’d get it. I got to read books that with price tags of $800+ patients normally can’t afford. I learned so much more than I had learned from any of the oncologists. Mayo library was the Gift.

One day I read that echinacea increases production of endogenous interferon-gamma. The study drug I was being prepared for in this 3 month study phase was Pegasus Interferon. So I ran upstairs with the book and asked to see one of the representatives of the study. It was a big study and dr Mesa was leading it, with representatives there for oversight. When the leading point of contact came out I told her what I’d found and said I’d started taking echinacea so that the interferon production could be enhanced without waiting. She very sternly, almost angrily said that if I took echinacea I’d be out of the study and a lawsuit would follow because I had signed off and we were 2 1/2 months in. I left feeling betrayed. I remember driving back to that big empty house realizing something I’d always known but didn’t want to face. Something I’d seen through the kids journeys. I realized everything was broken in a system meant to heal. I realized that those weren’t people rooting me on, those were people looking at a bottom line that had nothing to do with me. For two weeks I took the pills given to me by the first incessant pharmacy and sat in a daze. I was crushed. I just kept thinking over and over about how much I wanted this, to be healthy, and how many pieces of red tape in the form of human barriers are often in our way. I thought about how much this all affects the kids, it ran over-and-over in my head. When I approached her she could see how hopeful I was and instead of calling my oncologist and discussing, she threatened me. Because I wanted to take echinacea. I understand that they wouldn’t have known if interferon was helping me or if it was the plant, but there’s humanity lost when faith in a plant is met with the threatening of a lawsuit.

I stopped taking the pills a few days before the injection was scheduled having realized they were hurting me. I love me, and didn’t like the haze the pills provided. I think sometimes something bigger can call you out from a haze that’s providing false comfort, as long as you’re willing to listen. That night before the injection I tossed and turned. I didn’t want to take it. I wanted to try this on my own after reading so much in this incredible library. I learned so much there that a voice like a boom was crying inside me to put that knowledge to use. It had been 3 months though of preparations, and they had already threatened legal action against me once just for suggesting a plant. I needed help, advice from a friend but I didn’t have a friend to call. I had thousands of people who would have talked, but I didn’t have one friend to call. Suddenly at midnight an old friend, Caleb, who used to work for me called. Caleb had admitted himself in a mental institution a few weeks prior and he had just gotten home when something told him to call me. I answered so happily and told him I didn’t know what to do. I listened to his story and he listened to mine and somehow just through a normal conversation he reminded me who I am.

That night I had the best dream I’ve ever had. I was sitting at a boardroom table with over a dozen people staring at me from across the table all dressed in suits. They each represented an institutions or corporation. They seemed much bigger than me in that moment with looks of intimidation, sharks that smelled blood. I realized they all knew my name, and I didn’t know one of theirs. And that was my power. That next morning I strut into that beautiful hospital and up the elevator to the oncology/hematology floor. There were interns standing in a line all with their notepads and pens out ready to document the injection. Every student seemed intimidated by the heads of the study who were above them. I stood tall, smiled so big, and told the woman I wasn’t taking the injection. That I’d do echinacea and natural anticoagulants, and I’d see if that fit first. When she became argumentative I reminded her that this is my body, my choice, and reminded her that a news crew back home was following Courtneys Journey, and they’d be happy to discuss a pharmaceutical company suing their hometown girl. And then I left. They never sued me. They were not very happy, but nothing ever came of the threats. It was the dream that helped me remember who I am. The Interferon from that study is apparently helping people but the side effects do make you wonder at what cost. At that time I was being prepped that specific study was new with just over 100 people participants and I believe 6 had committed suicide.

The entire time from diagnosis-on I wanted to make the kids proud. I couldn’t give up because they were watching and, unless everyone around them gives, the kids never give up on themselves. Trying to have the same bravery as a child is one of the hardest things in the world. You have to forget things other people have told you throughout your entire life. You have to unlearn and go back to a time of innocence, where you can hear that loud Boom, talk to It and hear It more clearly. When you do, when you pray at that place, it works. Shedding knowledge from societal transactions that we accumulate over time isn’t a loss. Sometimes you have to go back to be shot forward. Had I listened to everybody else I would probably be dead. We don’t just listen with our ears, we listen with our heart as well. If someones heart is fearful of a journey you’re on, you can hear it loudly. But it’s your journey and you have to be careful. You can’t believe everything you hear. If you believe it, you achieve it.

It took 8 doctors to find 1 who would tell me I was going to live a normal life span. It took finding the top oncologist for this cancer to give me hope. Imagine how many people believe what they hear the first time around because of the confidence of the source. Psychosomatic is your minds effect on the body. It’s used in all placebo studies as the placebo. Your mind and your belief systems are more powerful than you can ever imagine. If you believe you’re going to die, you will. If you believe you can’t have kids, you won’t even try. How many people believe in something you don’t believe in? Society, institutions, these are all made up of people. We’re all flawed and we don’t have all the answers. It’s up to us to search.

I think the people closest to innate truths are kids. Kids can hear that boom inside before it gets drowned out yet by society and fears on the backs of the people. We need to go back to go forward. We need to stop drowning out that voice in people, especially ourselves.

The only time in this I felt alone was when I let a person scare me. The only time in this my gratitude left me, I turned to pills from the same field this person represented. A field that can hep save lives but that also becomes a crutch when maybe we can find something in ourselves even more powerful. Fear is the addiction. Believing in the fears so much that we let others put those fears onto us is the addiction. We’re stronger than molecules that leave our systems oftentimes just a few hours after entering. Maybe we just need to be reminded how powerful we are.

Dr Mesa remained my oncologist. He was a good doctor. Even though he would have monetarily benefitted from me being on the study because of my rarity, he accepted my reasons. He didn’t represent the pharmaceutical company more than he represented the cause, and that was cool. They’re not all bad. A lot of them are just as much victims of society and institutions as we are.