“Nathan was the life of the party. Loud, funny, outgoing, and always down for a good time. When we first met, his sarcastic, over-the-top personality both drew me to him and drove me a little crazy! As we got to know each other better, I fell in love with all the shenanigans that made him who he was and he fell in love with my unending patience for his craziness. Once we started dating, we were inseparable. We had the kind of love people could feel when they were around us, whether they knew us well or not. We played off each other’s personalities and I quickly started to join in all his pranks. Well, when he was not playing them on me.
We were just a young couple, enjoying life and time with our friends and family. We bought a house together and started making plans for our future. Marriage, kids, and even funny things that he planned to do when we were in our 80’s and had grandchildren. All the things you are supposed to do when you think you have found your person.
Then, life changed. Nathan was a soldier and served in Iraq from 2004-2005. During his service, he was exposed to Open Air Burn Pits and various chemicals. His unit took direct hits, as their job was to clear routes for other soldiers. This included digging up roadside bombs, which did not always go as planned. His unit saved countless lives but also experienced loss of their own.
In 2009, he was put on Active Duty and went to Germany to train soldiers that were preparing to go to Afghanistan. During this training, they were working on Riot Training and Nathan was hit in the knee with a Riot Shield. He was seen by a doctor there and treated for a possible knee fracture. When he came back, he continued to have difficulties with the knee and started to develop a mass on the side of the knee.
Our journey, or rather roller coaster, with the Veteran Affairs Hospital began. Since this was a service injury, this is where he started his treatment. The hospital was extremely difficult to schedule with and they continuously misdiagnosed his injury. Multiple times, Nathan asked for scans and surgery to identify and remove the mass, as it kept increasing in size and pain level. His activity had diminished greatly, as it was just painful to even walk.
After losing our patience with the unprofessional and sometimes unqualified staff, we started making waves to get him the proper diagnosis. A patient advocate was assigned to us, after a particularly disturbing incident where a doctor attempted to remove fluid (via needle) from a solid mass. The pain was so horrific Nathan was left in tears and had to yell at the doctor to stop. The doctor then left the exam room door wide open while Nathan sat with his pants down around his ankles, in tears from a procedure that was completely unnecessary, to begin with. This is only a small example of the things we experienced during his time there.
Eventually, the decision was made to remove the mass and send it for testing. When the surgeon came to talk to me after the surgery, he assured me he did not think the mass was anything serious, as it had ‘clear margins,’ but they would go ahead and send it for testing to see if they could figure out what it was and why it had developed. So, we went back home, and he worked on recovering from the surgery and we waited for the results.
Two weeks later, Nathan called them because he had not heard from anyone. This is when he was told, over the phone, he had cancer and would need a second surgery and he would need to schedule an appointment to talk to one of their oncologists about further treatment. When he got off the phone, I asked him what they said and he very simply and quietly said, ‘They said I have cancer.’ I can remember all the air being sucked out of the room and my stomach feeling like I had just taken the hardest sucker punch of my life. I remember running to the bathroom and getting sick while he sat in the chair, staring silently at his phone. And then we just sat and cried together. We were scared and did not even know the official diagnosis, as they had only told him, ‘You have cancer.’
During the time he was going to the Veterans Affairs Hospital, he had started to work with a counselor to deal with some issues he was experiencing from PTSD and his Traumatic Brain Injury. So, after a few days of gathering ourselves, we called her to let her know he had been diagnosed with cancer and we would need support to process that diagnosis. I am a Social Worker and worked in the mental health field, so I knew how important it was to get support for both of us.
He had his second surgery and started radiation under the recommendation of the oncologist. In the meantime, I started researching the type of cancer he had. Synovial Sarcoma. And found it was an extremely rare cancer, was more prevalent in children than adults, and tended to be extremely aggressive and the survival rates were not good. I quickly realized the hospital we were at was not qualified to be treating this and I started looking for a Sarcoma Specialist.
I eventually found one of the top-ranked specialists and we made an appointment with him. At the time, Nathan was in ‘remission’ according to the Veteran Affairs Hospital. The specialist quickly informed us Nathan should of went through chemotherapy treatment along with the other treatments and because he did not, the chances of the Synovial Sarcoma coming back were extremely high. He also said it is extremely common for it to metastasize to the lungs and when that happened, Nathan would be considered terminal. He tried to lighten that news by explaining technically, we are all terminal, we just do not always know how many years to expect or hope for. He also explained there were many treatment options he would use when it came back and he would do his best to prolong his life for as long as possible and give him the best quality of life he could while he was here. Devastated is an understatement.
Sadly, the specialist was correct, and the Synovial Sarcoma came back. In his lungs. And the battle for his life began. It was filled with ups and downs and so much pain. Weeks of staying near the hospital for treatment, sickness from the chemo, learning how to be his ‘nurse’ at home and how to advocate for medication changes when I noticed certain things seemed to work for him better than others. Regimented schedules for treatment appointments and even stricter schedules for medication to prevent pain or sickness. I was silently watching the person I loved be ravished by this horrible disease.
However, in true Nathan fashion, he refused to allow it to define him. He kept most of the details of his treatment and prognosis between me and him and the medical professionals that were treating him. He lived by the motto: ‘I deal with this when I am in treatment, but when I am at home, I live my life and I don’t dwell on it.’ He also subscribed to the belief he did not want people to know everything, because he did not want sympathy and most importantly, he wanted people around because he was alive, not because he was dying. Talk about a heavy burden.
Not only were we grieving a cancer diagnosis, but we were also grieving the youth we were losing. I was 25 when he was diagnosed, and he was 31. Our friends were getting dream jobs, dream homes, getting married, and having kids. We did get married during his battle but we were fighting for his life and had extraordinarily little time for anything else. The life we had planned out together would not get to be live out and ultimately, we both had to grieve his impending death, while still trying to live our lives and make lasting memories.
Grieving the loss of your own life/the loss of someone before they are even gone, is one of the most confusing places to be in. You are doing your best to soak in every single minute and memory with that person, but as the cancer progressed the question of ‘is today the day that I will lose him’ and ‘how do I keep going after he is gone’ hangs over everything you do. It is the darkest, heaviest cloud that just suffocates you. Thankfully, we had a skilled counselor to help us through this process and guide us in communicating with each other regarding how we felt and what we wanted for each other. Things I needed him to know before his death and things he needed me to know for the time after his death.
He passed away in my arms. He had gone for his radiation treatment and coded on their table. They sat him up and he came back. The cancer had grown over his heart and caused it to stop when they had laid him down for treatment, but it started again once he was upright. They brought him to an area so I could be with him because he kept asking for me. Prior to this, he had made the decision to sign a do not resuscitate form and he had given me and the physicians extremely strict instructions on this. It was his right to choose what treatment he wanted, and his wishes were honored.
However, he came back on his own, so I was able to be by his side. From beginning to end. As he was struggling to take his last breaths, he kept trying to take his mask off to tell me something and I finally realized what it was. I whispered in his ear, ‘I love you and I know that you love me too. It’s okay.’ And he stopped struggling and took a few more breaths before he left this world. I honestly believe he needed me to know that before he could take his last breath on this earth.
I messed up a lot during the early parts of my grief journey after his death. I did not always handle things gracefully. I was not always kind, because I was so angry. Sometimes I allowed other people’s emotions and grief to dictate what I did in my life and other times; I just did not care. At times, I made decisions based on whether I needed to dull the pain that day or whether I needed to feel the pain, just so I could feel like I was alive. I remember telling one of my friends my heart hurt, and it just felt like it was broken. A very real physical pain I could feel.
I was young (27), and I had just experienced the biggest battle of my life and then I lost the person I was supposed to be spending forever with. Not only did I have to grieve the physical loss of him, but I also had to grieve the life we had planned but would never be able to experience together. Then, I had to grieve friendships and family relationships that ended or changed forever, because everyone handles grief differently. Sometimes I had to make the decision to walk away from people and things that were unhealthy or not supportive of me getting healthy and moving into my ‘new’ life after my first world ended. People can be unkind and at times they feel like they know what is best for you and your life, even though they are not the ones living your life or with your pain. Live your life anyway.
On top of that, I still had to battle with the Veteran Affairs to get them to Service connect his cancer to the Open-Air Burn Pits he was exposed to during his service. This included me talking to Senators, them holding meetings with me and the head of the Veteran Affairs Hospital and so much more. It was not an easy feat, but I did eventually win, as his specialist had no doubts his cancer and ultimate death were a direct result of the chemical exposure that came from all the things that were burned in the Open-Air Burn Pits.
During Nathan’s cancer battle, I lost myself. I was so consumed with working two jobs to support us because the Veteran Affairs kept denying his claims, taking care of him, attending every single appointment he had, regimenting his treatments at home and medication, fixing meals, and setting up people to ‘visit’ him while I went to work, advocating for him, and then normal everyday task on top of all of that, I just did not have time for me. We were in crisis and we did counseling to put out fires and prepare for the worst, but I no longer knew who I was as a person.
I also did not know who I was becoming. Every time I had to fight for him with the Veteran Affairs or Insurance or whatever came up, I was getting a little stronger and a little feistier. I did not realize at the time, but I was finding my voice. After his death, I learned how to use that voice and once I learned how to channel the anger that was left behind, I became unstoppable in any task I took on, in regard to him and his life and service.
The grief remains, it just looks different now. The anger has subsided, and I have accepted the situation for what it is, what it has taught me, and how far I have come. All these years later, there are still days the grief cripples me and feels like that sucker punch to the gut again. However, I have better coping skills now and my life is just in a good place. A partner that loves me, children I never thought I would get to have after Nathan passed away, and I helped start and build a Fundraising Race that has raised well over $1 million for Sarcoma Research.
I am living proof your life is what you make it. I could have easily been bitter and stayed angry and locked in the cycle of grief for the rest of my life. However, Nathan made me promise him I would not be bitter and I would do good things for other people that had experienced things like us. That gave me something to focus on, goals to work towards. And every day I got up and took one step in the direction of a better life for myself and others, made me stronger. It was not easy, but I knew I could do it because I had already survived the hardest days of my life. I just had to remember big things come from small steps and sometimes a step is more like a crawl, but it is still progress.”
This story was submitted to Love What Matters by Fran Earls from Illinois. You can follow their journey on Instagram here and here. You can learn more about her fundraiser race here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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