Hello, my name is Susie Lovaglio. Let me tell you about my best friend Rebecca Orr! She is the Yin to my Yang! We are complete opposites, yet so much the same. I will never forget the very first time I ever saw her. It was backstage at a show, and she had a flower in her flaming red hair. I said hello, and she just stared at me! Fast forward a few months, and we met again. Instant connection! Within a short time, we would joke about how I thought she hated me, when in fact she was just hungry. :) All of this to say that I love my best friend more than I can express on paper, and today I ask for help to save her life. Just a few months ago, Rebecca was diagnosed with an aggressive form of liver cancer called HCC. A large tumor, which she calls Carl, has taken over her abdomen. This has become a dire situation, and I am not above asking for help. I sat with Rebecca and put her thoughts into words.

From Rebecca’s mouth to my hand, this is what she would like everyone to know:

Earlier this year, I began to have symptoms of reflux, known in the medical world as GERD. It was new and bothersome. A few weeks later, I noticed a visual change when I would lie down that I thought might be a hernia, so I scheduled a visit with a gastroenterologist in early April. I had not experienced GERD symptoms that day, so the doctor quickly dismissed it. She never put her hands on me, never looked at my abdomen or did a physical exam of any kind, never ordered blood work, nothing. She dismissed the concern about the hernia, advised me to contact her if the reflux returned, and sent me on my way.

Within a few days, the reflux symptoms returned in full force, but this time, I went to my primary care doctor to see about the reflux and potential hernia. He ruled out a hernia and ordered tests and bloodwork that day. Within a few days an ultrasound revealed a mass of some sort on my liver. I was swiftly referred to a new and most wonderful GI doctor who performed an upper endoscopy the following week. He found no hernia or GERD. Instead, he found an advanced cancer in my liver that is called hepatocellular carcinoma, often referred to as HCC. He immediately referred us to Johns Hopkins. The tumor burden on my body was so significant that I was not eligible for a transplant, and it was inoperable due to the extent of the disease. This was shocking and devastating.

The Johns Hopkins oncology department wasted no time. I was swiftly placed on immunotherapy protocols. The first round of immunotherapy treatments was quickly deployed, but after just a few weeks and more scans, they did not affect the reduction of the tumor. The team was quick to shift gears and switch to a new drug protocol, which we found was effective in reducing the size of the cancer. Unfortunately, it also came with such extreme side effects that my body could not sustain being on this new immunotherapy. The GI symptoms were severe. I was mostly housebound for about 4-6 weeks because of this and lost over 20 pounds in about 4 weeks. Continuing with this drug was not an option. During this time, I was presented with an opportunity to be involved in a trial for a new medication that had been deemed highly effective at targeting the cell type of my tumor.

We were hopeful and started the 9-week trial. Long days at the hospital seemed worth it! The doctors were optimistic that this could be the answer. I also experienced no side effects, which seemed like a win. This made it possible to start returning to a healthier weight and get back to what had become our new normal. Things were looking bright!

The last few days of October, and almost at the end of the drug trial period, I felt a sharp pain in my abdomen, and new scans were ordered. It was not the news we hoped for. The trial has been unsuccessful. The tumor has grown significantly and has metastasized to my left adrenal gland. It is now compressing the right side of my heart, as well as my diaphragm, severely compressing the main blood vessels that supply blood flow to my heart, liver, and other surrounding organs. This was the source of my discomfort.

At this point, my team at Johns Hopkins is at a loss, and any treatment they may have to offer would be a shot in the dark. They are an incredible team, but we concluded that they do not have any tools left in their toolbox to give me a chance to beat this.

We have decided to travel to Envita Medical Center in Scottsdale, Arizona. I will be under the care of an integrative oncology team that is not bound by the restrictions of insurance companies. They do not accept insurance, so we will have to pay out of pocket.

While their treatments are very promising for treating advanced cancers, the associated treatment bills will be substantial. The average treatment cost ranges from $145,000 to $200,000. My husband and I will be in Arizona for 10 to 15 weeks, so being away from home for this extended period comes with additional expenses. It is outpatient treatment, 5 days a week, with weekends off. Envita gives me one last chance at beating cancer.

To most of you, all of this will come as a surprise. All of this has happened quickly, and in roughly 6 months, my life has gone from normal to fighting for a chance of survival. As a result, it has been challenging to process and keep even the simplest day-to-day tasks moving forward. I did not have the headspace to share this beyond my immediate circle. I do not want people to say, “I’m sorry”, or treat me any differently than before. My head and my heart can’t handle it. I want to fight this, so please join me in fighting this.

I may have cancer, but I do not identify with it. However, the fact remains that I do have a very aggressive form of cancer, and right now the cancer is winning. I am not yet ready to give up on my life. I love my life, my husband, my family and friends, my horses, my job, my work family. I cannot and will not lie down without a fight!

This has all been humbling and difficult, especially reaching out for help from others, but any contributions are appreciated. I will never be able to repay the generosity of all the wonderful support I have received so far. #F@ckCancer

Thank you all for helping me beat this, Rebecca

The last 48 hours have been a whirlwind, as you can imagine. At this time, it has become increasingly difficult for Rebecca and her husband to respond to well-meaning family and friends who are reaching out to them. Rebecca and Nate have touched the lives of so many people, and are surrounded by those who care about them deeply. For this reason, I would like to ask you to please refrain from calling or texting at this time. They are mentally and physically overwhelmed by all of this, especially given the suddenness of the news they received this week. Their focus must be on preparations and keeping her well. The concern is greatly appreciated in ways they cannot express, but they are at max capacity for what they can handle right now. Instead, please leave a message in the comments to encourage Rebecca and Nate as they continue to fight this fight!