None of us ever think we will become the statistic. Unfortunately though, sometimes we do. This is my story of how I joined an elite group of 13,000 other Americans this year. I hope it gives comfort to others in similar situations and answers the questions that my friends and family may find too difficult to ask. Here goes.
January Ice
As most bad things do, my story started in the middle of winter, during our week of heavy snow and cold weather. I was tending to my cows; cutting ice so they could access water. Sometimes I forget that it’s been almost 20 years since I was in great shape from playing basketball, stacking lumber, and off-bearing at a sawmill. Now most of my time is spent at a desk, and naturally I’m not as fit as i used to be. Thus, it wasn’t a great surprise when I ended up a little bit sore from a few days of cutting several inches of ice.
A few weeks passed. My back felt like it was back to normal, but this one spot in my leg seemed to be doing the opposite. In fact, it seemed to be a little swollen and was sore with certain motions. It was a strained muscle, and the work I had continued to do by tending to my vines and cows was preventing it from healing, I assumed. I started to be more diligent about resting it.
Spring Break
We traveled to Florida for a spring break vacation. My leg was still bothering me, and the plane rides certainly didn’t help anything. When we arrived back in Missouri, however, so arrived a new wave of pain much worse than everything else up to that point. I was taking acetaminophen and ibuprofen at night and carefully concealing a limp during the day, but it was becoming more than I could handle. Clearly this was beyond a strained muscle; I must have somehow torn a hamstring or something. I needed to see a clinician. Finally, I went to urgent care on April 4th, and that was exactly the tentative diagnosis I received, along with referral to orthopedics. The provider noted the swelling in my leg; my left was 2-3 inches larger than my right! No wonder I was in pain.
On one hand, it was a relief to know the pain had some explanation and that it wasn’t in my head. On the other, it was humbling to think I could somehow tear my hamstring by just a little overexertion? Something didn’t quite add up, but I was ready to move forward and fix what needed to be fixed. It would be no different than the two times I tore my ACL and had them repaired: short term pain for a long term solution.
The Revelation
My PCP was kind enough to help me circumvent the orthopedics referral by ordering an MRI of my leg and lower back, which I had on Wednesday, April 8th. Thursday, I was out working on my farm truck when I had a frightening sensation; I was having trouble seeing. A pulsing, blurry spot started in the center of my vision, where I couldn’t see anything clearly. Having been prescribed prednisone for the pain by the urgent care doctor, initially I was sure I was having hypertensive crisis. We quickly packed the kids up for Mary to take me to the ER. By the time we got to town, however, the pulsing had slowly migrated from the center of my vision to the peripheral, and then disappeared. We stopped to check my blood pressure; it was normal at 124/84 mmHg. This was not hypertensive crisis, thankfully. Instead, it was my first ocular migraine or migraine with aura. Migraines were nothing new to me, but I had never had an aura before. A fun, new problem. We went home and I scheduled an appointment with my PCP first thing Friday morning to discuss.
Ocular or Retinal Migraine is a temporary, usually painless, visual disturbance affecting one eye, often involving shimmering lights, blind spots, or zigzags that last less than an hour.
Friday morning, as I was still mostly worried about the new event from last night, I logged into my patient portal to check for any MRI results after I had already dressed for work. Nothing could have prepared me for what it would show. The summary portion of the report read:
“Impression: Large bilobed posterior left thigh compartment neoplasm, suspicious
for sarcoma.”
Sarcoma – A broad group of cancers that start in bones and soft tissues.
Sarcoma. Cancer. I had cancer? How was that possible? As unbelievable as it was, I also knew it to be true. The hamstring story just didn’t add up. But cancer? That fit perfectly. So many questions ran through my mind. Why didn’t I see it earlier? Could I have caught it sooner? Is it in my brain too? Is that why I had an aura? What does this mean for my family? Am I going to die?
The size of the tumor on the MRI was massive… 8 inches by 5 inches by 3 inches… no wonder my leg was swollen and it hurt so bad! From that perspective, it was good to finally have an answer, I had a very good reason for what I was feeling. But the road that was now laid out in front of me was much darker and scarier. I cried.
The Other Shoe Drops
There were still so many unknowns at this point. There are over 70 types of sarcoma, and the treatment and prognosis varies widely between them. There was no way to answer the questions that I had. However, my PCP, Kyla Hobson, worked her magic again, and got me in with Dr. Ali on Monday the 13th, which was lightening fast! This eased my mind a little — we were on the right track to dealing with this new diagnosis. Dr. Ali laid out the plan. We had to determine the specific type of sarcoma and to make sure it hadn’t spread anywhere else. That meant a CT scan and a biopsy.
I scheduled the CT as quickly as possible on Wednesday the 15th, only a week after the initial MRI. If I had known what it would show, I may have opted for a few extra days of peace instead. Nevertheless, only a couple hours after the scan, the results were in. The bottom line finding? I have “extensive pulmonary metastatic disease.” The cancer had already spread.
The Emotions
I was stunned when I got the news in my office at work. I was ready to fight this disease in my leg. I was hopeful that the worst case that I would face would be an amputation. I can live without a leg. I can’t live without lungs. Mechanically, I completed my Wednesday task of picking up John and Amelia at the bus stop to take Amelia to her dance classes. I greeted them with sadness concealed by love, suddenly overwhelmed by the realization I may never get to see them grow up, that they may have to go through life with the trauma of losing a parent. It was too much.
Cancer that spreads to a distant site, such as the lungs, is usually classified as a Stage 4 cancer, which is generally considered “incurable.” Advances have been made that have improved survival in many stage 4 cancers.
We went on to dance class, and even though parents aren’t encouraged to watch, I did anyway, knowing how much Amelia loves to have people see her perform. I felt like I couldn’t let another such opportunity pass. Every time she looked back at me to see if I was watching, I smiled, but I was doing a poor job of holding back the tears while I did it. I’m sure any other parents there that day would have noticed something was wrong.
At home I waited impatiently for Mary to arrive. I wanted so badly to tell her, but I also wanted to grant her peace through the end of her workday and drive home. It’s not the type of news to receive alone. But I couldn’t protect her forever, I was no longer in control of this situation at all. When she came home, I met her in the kitchen and handed her the report. She looked as stunned as I had felt earlier. Unable to contain myself any longer, I wrapped Mary up in my arms. She held me as I sobbed, mourning the plans for our lives that had certainly just changed forever.
Continued Beatings
Even with this news, there was still nothing to be done but wait another week for the biopsy scheduled on April 22nd. After that, we would know the subtype and be able to develop a treatment plan. It was only 7 days, but it felt like a year. It was difficult to concentrate on anything… at work or at home. My mind vacillated between thinking all of the worst thoughts and being confident that my age and otherwise good health would make me the exception to the rule.
When Wednesday finally came, Mary and I waited with the children at the bus stop before taking off for Washington bright and early at about 6:30 am. Before long, I was stripped down except for a hospital gown, laying on a CT table with a needle sticking out of my leg. It wasn’t the most pleasant thing, but we were relieved to have it done, knowing we were on the right track and would have answers and a treatment plan soon. I even convinced the nurse to let me out of recovery a half hour early. We were almost jolly on the way home, taking time in Rolla to do such mundane tasks as a Kohl’s pickup and grabbing lunch at Panchero’s. It felt like everything might be okay.
Thursday, I was back at work as the team at the Dent County Health Center was busy doing last minute preparations for our Awards Gala on Friday night. My MyMercy app pinged me… I had a new result. I was confused… there was no way this could be my biopsy results already? They told me it could take up to a week! I logged in to read it.
Ugggggggh.
I would not get answers today, tomorrow, or next week.
Explore: What does tumor necrosis mean?
Moving Forward
I was sitting in a meeting when my oncologist called that day. Obviously this was a setback; the biopsy would have to be redone. I was losing more time. There was nothing I could do. He decided to order a PET Scan of my whole body, which would do a couple of things: 1) It would show ALIVE portions of the tumor for better biopsy results and 2) it would help make sure there was not any spread beyond the lungs. On this day, I was having my second migraine with visual aura, and so this second concern was still very much front and center in my mind. At the same time, I wasn’t sure I would be able to handle the results when they came.
I was completely worthless the rest of the day. I just went home. I couldn’t handle it, the feeling of helplessness and total loss of control. I am used to either having the answers or being able to figure them out. In this case, I could do neither. At every stage the news had gotten worse. Will that continue with the PET Scan and the next biopsy? With treatment? And somehow, I had to get up the next day and emcee a major event with over 180 attendees? It didn’t seem possible.
The Gala and Beyond
Friday was the Gala. I am so thankful for my team at the Dent County Health Center for the excellent job they did planning the event. All I did was show up and talk. I handled it okay, but by the end of the night my leg pain was at an 8/10. I’m sure many people noticed me favoring the right leg. Between this public display of injury and my “mysterious” Facebook status the day before, it was clear the cat was out of the bag. I told my staff on Sunday, and I’m telling you all today. I know how rumors spread in small towns, and it’s always better to have information from the source.
Moving on to this week, I’ve had my PET Scan and I am currently writing this as I rest from the follow up lung and leg biopsy. On Monday, we received the first good news in the past month with the PET Scan results — there was no spread beyond the lungs. My fears about my migraines were allayed.
My Outlook
Though the situation I face is not favorable, I do have some things working for me. First, despite how gray my hair looks, I am only 36 years old and otherwise healthy. Second, I have a beautiful family to live for. Third, I have all of you and all of the various personal projects and professional initiatives at the Dent County Health Center. I have so much more to give my family and my community. There will be good days and bad, but this fight is not over, it’s only beginning.
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