My name is Nikolas Jiruska and I recently finished receiving chemotherapy treatments to fight a rare form of bone cancer called Ewing's Sarcoma. This disease primarily affects children and adolescents, but I was diagnosed at the age of 20. It was a long journey, and I am fortunate enough to be able to say that I am now back at The University of Iowa nine months later and enjoying life more than ever. Now, let's go back to April 2013 where my journey began.
I started feeling pain in my left hip towards the end of April. It was a fairly mild pain and it would come and go every so often. I thought it might have been a pulled muscle or a pinched nerve. This persisted for a few weeks before the pain started to get worse. Fortunately, the intense pain waited until I was done with my final exams for the spring 2013 semester. I went to the emergency room at St. Luke's Hospital in Cedar Rapids the first time the pain in my leg became unbearable. It started in my hip and would send deep, pulsing pain down my entire leg. They drew blood and took X-rays of my back and hip, but were not able to draw any conclusions from this work. I received some pain medicine and was told to keep monitoring my leg.
The pain continued to grow worse and worse from then and I went to the emergency room two more times before I finally received an MRI. The ER doctor who was tending to me knew immediately that I had cancer after looking at the results of the MRI. This was the last thing I ever expected to hear, especially at age 20. The doctor arranged for me to go to The University of Iowa Hospital and Clinics immediately. My parents, girlfriend, and I left St. Luke's and went straight to Iowa City in the middle of the night.
After a few days of various tests, I was officially diagnosed with Ewing's Sarcoma on June 4th, which also happens to be my mother's birthday (happy birthday, right?). Although we had the official diagnosis, there was still a lot to do to find out if the cancer had spread anywhere else. After the initial blow from this horrifying diagnosis, we only received good news from then on. All of the tests revealed that the cancer was localized in my hip and had not spread to the brain, lungs, or bone marrow, which are three locations that this could likely spread to.
At this point, I started my chemotherapy treatments and talked with my oncologist, Dr. Mohammed Milhem (just "Mo" for every one who knows him), to get an idea of what the next few months would entail. I would receive chemotherapy treatments every two weeks, alternating between two and five-day treatments. I would have five rounds of chemotherapy and then have more scans to see how it reacted to the treatment. Shortly after, Dr. Benjamin Miller would perform surgery to remove the tumor. We thought I would have to receive a hip replacement, but there was a chance I could also have a bone allograft surgery depending on how the tumor reacted to the treatment. After the surgery, I would go on to receive nine more rounds of chemotherapy for 18 weeks.
It took me a few rounds of chemotherapy before I started to feel the effects. One of the effects that was the most difficult for me to grapple with was losing my hair. It was sort of my trademark and was a big adjustment in my life. However, a small price to pay, considering it would grow back eventually. Some of the other side effects I felt throughout my treatments were lightheadedness, fatigue, and nausea.
The first five treatments flew by much faster than I had anticipated, and all of the sudden it was August. I had my scans and my cancer had reacted very well to the chemotherapy treatments, shrinking the tumor a lot. Dr. Miller determined that I would be able to have the bone allograft surgery. There is a longer recovery time with this route, but long-term, it would be better for my leg in terms of returning to normal functionality. Dr. Miller and his team performed a successful surgery to remove my tumor on August 21st. He determined that 95% of the tumor was dead and had been removed with clean margins. This was a big step out of the way, and everything was downhill after that.
Perhaps it is only at this point in time that I can say that it was downhill after surgery. At the time, life was very difficult. I was not able to put weight on my left leg for three months because my bone had to heal around the graft, and when you are dealing with healing bone, everyone knows this is a very slow process. This lack of mobility along with starting my final nine rounds of chemotherapy made my choice to withdraw from school for the fall 2013 semester pretty easy.
I do not know how I would have made it through those three months without my parents and girlfriend. They went out of their way to do things for me much more than they needed to. I am so grateful for them and what they did for me during this time, and during my whole fight. I primarily spent this time going back and forth between my apartment in Iowa City and my parents' houses in Cedar Rapids, when I was not at UIHC for treatments. This was an uneventful time, to say the least. My days were filled with watching movies, Netflix, and playing videogames. It was the lazy time you fantasize about when you are living a normal, busy life, but believe me when I say this lifestyle gets old very fast.
After beating five video games and watching countless movies and TV shows, my three-month appointment with Dr. Miller arrived on November 14th and he gave me the OK to start bearing weight on my left leg. Goodbye, walker and crutches. I started practicing to walk immediately when I got back to my apartment after that appointment. It was an awkward and exciting feeling. I had, and still have, an overwhelming feeling of thankfulness that I have the opportunity to walk, because not everyone is fortunate enough to be able to keep their limb when they are diagnosed with Ewing's Sarcoma.
At this point, life was getting pretty good. I was walking again and only had four more chemotherapy treatments to go. However, my last few treatments were delayed because I was really feeling the negative effects of the chemotherapy and I was not meeting the required blood counts to be able to start the next round of treatment. I had to receive a handful of blood transfusions during this time to help meet the blood count requirements. Thinking about it now, these setbacks were not a big deal at all compared to what can happen when receiving chemotherapy treatments. At the time, though, it seemed awful because I was so anxious to finish and get on with my life.
Finally, January 3rd came around and it was time to go in for my final chemotherapy treatment. Unfortunately, this had to be a five-day treatment. The longest five days of my entire life, I think. My girlfriend stayed with me every night in the hospital, as she did during my treatments in the summer months, which made everything a lot more bearable because she is a very comforting person to be around. The wonderful nurses of 4JPE in UIHC presented me a beautiful cookie cake to congratulate me on my final day. I then returned to Cedar Rapids for a couple of weeks of rest, relaxation, and relief before I would return to school. I returned to UIHC three weeks after I completed chemotherapy for a bone scan and CT scan to make sure I was clean. Sure enough, the scans were clear. We were all optimistic that this would be the case, and it was truly a wonderful feeling. Time to get back to life.
I am sitting here writing this now and I do not feel bitter about having to have endured this experience at all. I have only to be thankful that I survived it. Also, as odd as it may sound, I am sort of thankful that I went through this experience because I learned a lot about myself during this time and it strengthened my relationships with those closest to me. I want to conclude my story by saying that you should never overlook any pain or odd feeling you may experience in your body. I did not do this and the early detection of my cancer may have saved my life. I also want to give thanks to my wonderful caregivers throughout this journey, including Mo, Dr. Miller, my parents, my girlfriend, and the nurses of 4JPE, 4JPW, and 2RCW.
Update: After his courageous battle against sarcoma cancer, Nik passed away on 5/30/2016.
2017 Courage Ride “Honorary Dog”
I want to introduce you to a special dog. I use the word dog loosely because based off of her looks, I’m not entirely sure she’s 100% canine. Another species had to have snuck their way into her genome. I’m sure of it. Her mandible is so pronounced that she constantly has a fierce look of disapproval on her face. Yet you make the slightest eye contact with her and her ears go back so far with glee that you physically cannot resist swooping her up in your arms. Often, she will let you know when you are not giving her the constant attention and serenades of affection that she desires by crawling onto your chest and staring into your soul. She is gifted with the ability to make anyone that looks at her irresistible mug, smile. Technically her name is Maple but she’s grown accustomed to responding to all of her quirky made-up names for her, Peanut Monkey & Turkey Toes being her personal favorites.
Now let me introduce you to Maple’s dad, Nik. Nik was diagnosed with a rare bone cancer, Ewing’s sarcoma, immediately following his sophomore year at the University of Iowa. He went through the typical initial treatment of chemo, surgery, chemo for nine months putting him in remission right at the start of the Spring 2014 semester. With so much to be grateful for, Nik was enthusiastic to aggressively tackle his schoolwork, fraternity happenings and workout routine again. And he did just that. Nik took vengeance against the time, productivity and wellbeing that cancer took from him. Life was back to normal; well, as normal as your life can seem with the constant fear of the upcoming follow-up CT scan. We were facing Nik’s 1-year scan, a milestone, when our lives were turned upside down again. A small lesion was seen on his lung. After 6-weeks of “watching it” and eventually a biopsy, our worst fear came to life. Nik’s cancer was showing its abominable face again.
Nik & I slipped into a relapse fog. I racked my brain for ways to make this situation any less gloomy, depressing and quiet. I was determined to not allow cancer to dominate our thoughts. Of course we always wanted a dog but it never seemed like a responsible time to get one. We were still in school, living on the sixth floor of a downtown apartment with a lot of uncertainty in our lives. Nik was very apprehensive about the idea of getting a dog. But after relentless persuasion, I had him on board with it. We scoured Petfinder.com for a rescue dog that was small enough for our apartment but manly enough that Nik would feel confident promenading the Pedestrian Mall with it. That is when we found the sweetest looking three-month old rescue puppy from Frankfurt, Kentucky brought to Magnificent Mutts rescue in Elmhurst, Illinois. Nik assured me that it was only a visit, as if I didn’t see the premium dog bed he had already packed in the trunk.
Maple came home with us that night, March 23, 2014, and she was instantly the focus of our days. She was Nik’s companion while I was in class and, eventually, work. We would walk her around the Ped Mall and strangers would call her by name. Thornberry Off-Leash Dog Park became a second home for us. Nik’s treatments would have their ups and downs, but Maple’s love for Nik was constant and restorative. During his eventual in-patient treatments, Maple’s visits would have the magical ability to turn the dull hospital room into a place a laughter and smiles. She even assisted him in Nik’s marriage proposal to me.
As time passed and treatments failed, Nik and I spent our most vulnerable moments with Maple by our collective side. Despite Nik’s physical deterioration, Maple was the force behind Nik’s high-pitched giggles through it all. Nik passed away May 30, 2016 in our townhome that we picked out together right next to the dog park. As Nik’s honorary pallbearer, Maple sat front row at his funeral just as he would have wanted. On the 1-year anniversary of Nik’s passing, we gathered at Thornberry Dog Park to celebrate the planting of a new tree in Nik’s memory - a maple tree. Maple is special for many reasons but my favorite is how fiercely she was loved by Nik.