When cancer comes, it comes in like a freight train. It comes out of nowhere; forcefully pushing you off your tracks, and life comes to a screeching halt. It’s loud and scary and you can’t hear yourself think. So much happened during that year, I wish I could’ve journaled and kept an account of what was going on each day. But I was so caught up in the disease- spending hours and days on end reading about it online and in the hospital library, taking copious notes on what the doctors said, what Levi’s numbers were, the hard facts, the medical data- that I didn’t record any of the other real stuff going on in the background or otherwise. I couldn’t. I couldn’t deal with it. I could barely speak of it. When you are in survival mode, there is only room for the basics, like getting out of bed and breathing. Some days I could only do the breathing. I’m grateful that we can finally talk about it and that it’s not such an open wound. You can’t deal with an issue when you’re in the mire of it. When it’s raw. When you’re doing battle and there’s no time for chitchat. You have to get some distance. I’m grateful that this platform has provided a space for us to revisit what needs revisiting and to tell Levi’s story because it is absolutely inspiring. And I’d say we all need all the hope we can get.
During Christmas break of Levi’s freshman year at Juniata College, he came home and said his back was hurting. He has never been one to complain, so I knew to take this seriously. We tried some basic things at home first, but then took him to urgent care and then to our family doctor a couple weeks later. Seeing a presumably “healthy” young man, he suggested that Levi should take a Tylenol and Ibuprofen cocktail and try stretching. Levi did what the doctor said and returned to school in January 2014. In a few weeks, he was in so much pain that he was taking 800mg of the cocktail 3x’s a day just to stay on top of it. During this time, he was attending all of his classes and doing his best to focus. Of course we took him back to the family doctor and I asked to be referred to a specialist so we could get some answers. Basically, we spent the next month going from doctor to doctor. Everywhere we went we were met with a pervasive cavalier attitude. Levi would explain the back pain and one after the other they would dismiss him. They took an x-ray, checked his blood, urine, blah, blah, blah…. At one point I said, “You aren’t listening to us. You don’t know my son. Something is wrong!” We were both completely frustrated. Levi was pushing and struggling just to get through each day. Finally, I called our family doctor-again- and demanded an MRI - NOW! I’m sure they thought I was an awful witch. Let’s just say, I didn’t ask nicely. The MRI and subsequent CT scan revealed that Levi had a 5” diameter mass growing in his abdomen that was pressing on his spine causing the back pain. By this time it was early March. The radiologist called us back to his office to show us the scans. He had our family doctor on speakerphone (yes, speakerphone) to give us the news. No one wanted to surmise what the mass was, so there was just a lot of silence.
His scans were sent to a doctor in Altoona, who promptly referred us to Pittsburgh. The specialist there told us that he could not be certain what we were dealing with until he removed the tumor and received the pathology report. He did however give us 2 scenarios. One- the tumor could be a harmless benign fatty mass, or two- a rare liposarcoma of the retroperitoneum. He stressed that he was leaning toward option #2 because, as an expert in this field, he has seen enough scans to know… He didn’t want to do a preliminary biopsy because if it was the type of soft tissue sarcoma he thought it might be, that would not be a responsible course of action. He warned us of the aggressive nature of the disease as the tumor was growing rather quickly, and scheduled Levi for surgery in early-April. If the tumor was indeed a sarcoma, radiation was to immediately follow. He also warned us of the possibility of it metastasizing to the lungs (as was typical for this type of cancer). Even though we had no pathology and only a CT scan as evidence, there didn’t seem to be a lot of hope in that room. The air was heavy and I didn’t like the way people were looking at me. I just remember that during that time everything was a blur. Surreal. It was so difficult to process what was happening. Of course Gary and I went home and read everything we could find online about that type of sarcoma. We did this everyday for weeks while we waited for surgery. We also prayed every single day that it was Option #1. One day we took a walk -to discuss it out of earshot of Levi- but we could barely speak of it. We just looked at each other. We knew it was bad and we were mentally preparing ourselves for the possibility of putting our son in the ground.
Levi informed the college of his condition and let his professors know that he was going to have to miss class for a while. They were all very understanding and cooperative. We moved his things out of his dorm and brought him home. Amazingly, he kept studying, kept reading, trying to stay on top of his schoolwork- especially Organic Chemistry 2. (Levi is pre-med, studying to be an orthodontist.) It was suggested that he could withdraw for the semester or longer, but he insisted on staying the course and trying to do his best despite the circumstances.
The Friday evening before his scheduled surgery on Monday, Levi suddenly got very sick. He was doubled over on the floor in front of the fireplace and said he couldn’t breathe and was having severe chest pains. We rushed him to the ER, which is thankfully one minute from our home, and they eventually took him by ambulance to Pittsburgh Shadyside. His father went with him. I ran home to pack all of our bags and called my sister – at 3 am- and asked if she would drive me to Pittsburgh. I was shaking all over and was in no condition to drive. I have no recollection of that trip. When we arrived in Pittsburgh, they were keeping him comfortable. Preliminary x-rays showed several spots on his lungs. There seemed to be two predominant camps of thought. One- that his presumed cancer was more aggressive than they thought and had indeed metastasized to his lungs - which was clearly a death sentence. Or two- that he had pneumonia. Either way, his scheduled surgery was canceled. I’ve never prayed so hard for a pneumonia diagnosis in my life.
That Monday, starting at 5am, there was a constant flurry of activity in Levi’s room. Teams of doctors would sweep into the room to discuss his condition then take him for various tests. This went on all day long. One after the other. There was the sarcoma team, the infectious disease team, the thoracic team, all with their own conclusions as to what was going on. The mood was heavy and they were all still greeting me with that look. That look I couldn’t stand! I said to Gary, if one more person looks at me like he’s already in the ground, I’m going to punch them in the face! They never did it to my husband. But whenever they came in to see us, they would all just look at me like that- and it was making me crazy! All we knew at that point was that no one was totally sure what was going on. Some of the doctors would come in and talk about the metastasis like it was a fact. They were just so sure. But the tests were inconclusive at that point. Finally, my husband, who is a man of very few words, stopped the doctor mid-sentence and said - “You don’t know yet what is going on. Until you do, you will not come in here and speak those words over my son!” They were taken aback, but heeded his wise words. Levi was exhausted. They were sticking long needles into his lungs to take samples. Test after test after test. He never complained. Finally, around 4pm, a nurse rushed in and asked Levi if he had ever had a testicular exam. “Uh, no. Not that I can remember.” She said, “We’re going to have one right now.” I could tell from the look on her face as she slipped her hand under the sheet that something was wrong. She said “I’m going to take him right now for an ultrasound.” And off he went again. Apparently, one of the residents on the sarcoma team started to put two and two together and had made the connection. About an hour later, all the teams of doctors came in, plus now the urology team had joined in too. There was a total shift in the air. The head doctor smiled and said, “Your son has testicular cancer.” What?!!! They also were certain that the spots on his lungs were indeed pneumonia. He said the good news was that testicular cancer is highly treatable and has a very good prognosis. He said that Levi would have an emergency orchiectomy the following day and start chemo shortly thereafter. Everyone seemed relieved by this news. My head was spinning! When the room cleared, Levi just looked at me and said, “Wow. I can’t believe I have cancer.” I said, “Yeah…me either.”
I went out into the hall and called my mother, who was home with Grayson, to try and tell her what was going on. I was still trembling. I just remember telling her that he had testicular cancer and that they were pretty sure it was pneumonia in his lungs and we both just sobbed.
We found out later that the onset of pneumonia was truly a gift. It came out of nowhere and had ultimately stopped the surgery for the misdiagnosis. We also found out that surgery on these types of tumors can sometimes make them grow even faster, so thank God they didn’t open him up before we knew what was going on! The pneumonia made everybody stop and reexamine. It made that resident stop and question- what are we missing? My sisters told me that they were at home praying for wisdom and specifically for the doctors to see what they hadn’t seen before. For their eyes to be opened. God answered their prayers.
Page Three.
-K
** The photo at the top is Levi's CT scan. It is a cross section of his abdomen and tumor. The big X is the tumor. It takes up over half of the space in his abdominal cavity. The white shape at the bottom of the photograph is his spine. You can see how squashed the kidney is by the tumor.
