I volunteer for a children’s cancer camp for an organization that works with families of children battling brain cancers, sarcomas, and leukemia. Each volunteer is assigned a family to counsel for the weekend. It’s in a forest next to the beach where the weekend is dedicated to believing and hoping. The kids get to play with other kids with similar conditions. They compare their ports and have their bald scalps painted. They completely go off their strict GMO free, gluten free, sugar free, vegan diets for this weekend so they can blow bubbles, bounce in bounce houses, play on the beach, eat countless cupcakes and snow cones, have their moment that cancer has taken away from them. I brought one of my sorority sisters to the camp and it changed her life. 

As a nursing student I’ve learned that I do very little for my patients but they give the world to me. As a CNA, I’ve insisted the physician order vodka for a 96-year-old Normandy veteran and widower who just wanted to forget his reality for a bit (side note, he had no hx of EtOH abuse), advocated for a woman with stage four lung cancer, compared amputation stories with a child suffering from sarcoma only to later attend his funeral. I haven’t done much, but I wish the people I help could see how much they help me. I think it was Steinbeck who quoted, “And now that you don’t have to be perfect, you can be good.” 

One year I was assigned a young girl with rhabdomyosarcoma. She had been diagnosed by her dentist on the roof of her mouth. Another side note: dentists and podiatrists are the most underappreciated medical professionals and I will preach this until the day I die. She and her family made regular visits to Stanford, she had part of her jaw and some teeth removed. She had endured countless rounds of chemo. Getting to know her family, they were standoffish, or in other words: scared shitless. They loved her so much and her mother just looked tired and worried. The girl said that when she grew up she wanted to be an oncology nurse so she could help people like her. At first I thought why? And then I realized she was me. That bit of hope at the end of the tunnel was what was keeping her going. There’s something to be said about human interaction and understanding. As much as I thought psychology was a useless subject in college, I realize that sometimes it is relatively useful. 

We became friends outside of the camp. Later that year she finished chemotherapy and was cured. When I brought my sorority sister to this camp (more on this later), she took on the family of a four-year-old battling leukemia. The girl I had worked with the previous year wasn’t there but instead on hospice. I felt my gut fall on the floor. After the camp my sorority sister and I cried the whole drive home and later got drunk on tequila.  

I told no one of my news when I was first diagnosed with cancer and we kept it quiet. I didn’t want pity or sadness. I felt like this was my burden to bear. At that time my brother was in grad school in West Virginia. He and I were close but I felt guilty for not telling him yet. I didn’t want to distract him from his studies. I didn’t want him to take time out of his day to worry about me. Here I was, seventeen years old and thinking that my own family was too busy for my cancer. I called him one morning before I went to school. It was ten in the morning his time. I called him from our house phone. He picked up on the third ring, “Hello?”

“Hi” I could hear my voice start to break. I had to spit out the news before I started to pity myself again. “That hand pain is cancer and I’m getting it amputated to get rid of it. I have to go now. I love you. Bye.”

I could hear him start to ask questions but my eyes welled up with tears and I took a deep breath. We need to stop crying I thought to myself. We need to be strong. We can’t change this reality. This is just a nightmare. It will all be over soon. In that moment I felt like a monster. Imagining John staring at his phone after his younger sister called him and blurted out she had cancer. Imagining him wondering, what the hell just happened? He didn’t deserve the way I told him. He didn’t deserve those feelings of helplessness. He didn’t deserve to start his day that way. I imagined him going to class that day carrying my burden in his gut. I imagined him feeling the same as myself-loss of appetite, disbelief, shock, sadness. I imagined it because I grieved for him. I grieved for his feelings for me. 

My sister and her husband were told of my news. Little did I know she was newly pregnant at the time. Little did I know she spent several nights in bed losing sleep over me. If I could go back and change anything it would be my siblings concerns for me. I knew that they cared and I knew that they loved and supported me. But I hated myself for causing them sadness. As a loved one of someone going through cancer it is the worst job in the world. You show up with your motivational quotes, good attitude, Pom poms, and humor but at the end of the day it’s your loved one-facing the disease head on and not you. They’re the one under the knife. They’re the one losing apart of themselves. You don’t know how it feels so you imagine it. And sometimes it’s much worse than you imagine. You try to empathize but you have no idea. And that is much worse.

REMEMBER THE NAME, SARCOMA!

I desperately reached out to anyone who knew anyone who knew what a sarcoma was. When people asked me what type of cancer I had, most of the time they looked at me confused. “You have hand cancer? How does that happen?” I’d struggle to string words together to make sense of what I had. I looked for resources online but they were limited. I felt as though I had exhausted all my resources until a girl I went to school with told me about her brother having osteosarcoma in his knee. He was a talented soccer player and had pain in his knee in high school. The trainers initially thought it was a swollen bruise but when it wouldn’t go away they sent him out for a second opinion. He was then diagnosed with osteosarcoma: a form of sarcoma that grows in the bone. Sarcomas are the meanest cancers. The are relentless and to cure them, it takes extreme measures. He ultimately had to get his entire leg amputated and undergo chemotherapy. I reached out to him and I sensed he was still recovering mentally from his treatment. He still seemed gun shy and almost afraid to talk about it. He was positive though, and a survivor. That was what I needed: someone who had survived what I was going through and was willing to be on my team. 

I found an organization called Sarcoma Alliance that provided some information about the cancer and treatment centers in the United States. I felt as though I’d been thrown into the frozen deep end of a pool where I couldn’t see the edges and was scrambling to not drown or freeze. All these sites could tell me was that sarcomas were rare aggressive cancers of the connective tissue, fat, and muscle. There’s no direct cause of them-however exposure to chemicals or radiation could put you at a higher risk. What does that even mean? These weren’t definitive answers. This didn’t help me. Then there was the survival rate. 5 year survival rate was 68%. Localized 5 year survival rate was 81%. Only 56% of sarcomas were localized. My heart sank. My was localized. Mine hadn’t metastasized to my lungs. So how was I supposed to react to this news? What I could do was educate everyone around me. The orthopedic surgeon was too arrogant to educate himself on sarcomas, therefore, it was my job to be that poster child. I learned how to advocate for myself and demand answers. My hand hurt for years and this doctor who I considered a friend, blew me off and didn’t fight for me. My UCLA doctors acted like starving wolves chasing the distant scent of raw meat. Within hours their entire team had me in MRI’s, my prognosis was outlined, and their entire sarcoma oncology committee had reviewed my case and developed a customized plan of action for my treatment. I know they say that forgiveness will set you free but here I am, ten years later, hoping that the doctor who blew me off hadn’t misdiagnosed another patient with sarcoma and still feeling bitter about his overall existence. I honestly hate him. I went to a spin class with friends and saw him there several years ago and had to leave I was so upset. This definitely isn’t my most shining moment. To this day, all I want is an apology. His children were all talented athletes and he would see me on campus. The last time he saw me I was wearing my prosthetic. I wanted to scream at him and say, “Had you taken me seriously and diagnosed me sooner I’d still have my hand! Now I’ve lost my hand and your kids are perfect!” But I didn’t. I wanted to sue him and question his license. But I didn’t. My parents just told me to pray for him. Pray he learn to take his patients seriously. Pray he never let what he did to me happen again. Pray that he asked for second opinions. But I suppose I should thank him. I wouldn’t be who I was today without him. I wouldn’t be the empathetic nurse who fights for her patients. When I don’t get answers from funky labs, I’m pestering the physician. I don’t tell people I can’t help them. I’m questioning results. I’m thinking that maybe this is that weird 1% case. That has allowed my patients to trust me and feel like I’m their advocate. 

Sarcomas need research. Even though they are rare, they are important. I’m now a member of a Facebook group that includes over 10,000 people, just like me. Confused, anxious, scared, and affected by sarcoma. Occasionally I’ll post that I’m over 10 years out from synovial sarcoma, right hand amputee and a nurse. There is hope. The page is uplifting and happy. It is a safe space for people facing the unknown to be vulnerable and connect. I get livid when I see on tv shows how they try to have a rare disease and treat it unconventionally. “You have osteosarcoma in your knee but we can do radiation and you can keep it.” NO! I’m sorry but no. Sarcomas need extreme surgical removal. They need clean margins. Sarcomas are nasty and will grow back if not removed properly. You need amputation or you will die. I get hurt when people ask me, “Why’d you lose your hand to cancer?” 

“Would you rather keep your hand or your life?”

Simple as that. Working in pediatric oncology I’ve seen countless sarcoma types and numerous cases. When I hear that someone had sarcoma my heart aches. It is painful because I know the common prognosis. It just sucks. It’s awful. 

A lot of kids I see who are diagnosed are athletes who don’t want to lose their leg or arm because of the promise of a college scholarship. Let me spell it out: without losing a limb with this diagnosis, there is no college. There is no life. This portion has been the most difficult to write because I feel I sound mean and resentful. The truth is: I’m passionate about this. And yes, I am angry. I’m angry that more people don’t know about this. I’m upset that misinformation cycles television and the internet. I’m saddened that more medical professionals aren’t educated in depth about sarcoma so they can be more aggressive about it. Sometimes I feel like I’m screaming on the top of a mountain by myself until I’m blue in the face and nobody can hear me. I’m upset and aggressive because I care and I’m sick of sarcomas claiming lives. If you get anything out of this book, get that sarcomas exist! 

I’ll conclude my rant soon, I promise. According to the Mayo Clinic, sarcoma is a general term to describe a cancer of the soft tissue and connective tissue. They can grow in joints, blood vessels, bones, tendons, muscles, and lining of joints such as in my case. There are over 70 different types! Each case is unique and requires specialized treatment dependent on severity, location, and pathology. They make up only 1% of adult cancers, 15% of childhood cancers. 100% reason to remember their name. SARCOMA.