Adene Smith RN, BSN, CNRN
A lifetime of compassion:
When I think about how my nursing career started I was always a caretaker of some type and had a passion for helping others. I never dreamed of the up’s and down’s I would have in my career. I have worked on the inpatient side of things, and that is much different than the outpatient side. With inpatients they receive the best care you can possibly give in a 12 hour shift and then typically they go home in the next couple of days and you never really hear from them again. With outpatients, most of these patients come in with various diagnosis and they remain your patient sometimes for the duration of their disease. I would have to say the year of 2013 changed my perspective of life, death and what it really means to be a nurse.
I have worked at Springfield Neurological and Spine (SNSI) for 8 years and have been a nurse for 16. When I first started working at SNSI we had this young man that came in with the diagnosis of, “brain tumor”. When I went in to visit with him we had an immediate connection. He had just received a terrible diagnosis but he was determined to beat it and I loved that about him. His fiancée was at his side every step of the way and they both had contagious optimism. John’s tumor was tetracarcoma and the first time he had chemo and radiation, 2nd time it came back same thing, third and forth time had to go to St. Louis for treatment because the tumor was in areas that frankly needed more specialized care.
After the 4th surgery he developed seizures and left visual field abnormalities which caused him not to be able to drive, and to do the outdoor stuff he really enjoyed.
He was an avid member of the support group I run for crani patients with tumor, aneurysm/AVM and TBI. He came every month and if he couldn’t be there because he was in treatment, he would always send an e-mail for me to read to others, giving them encouragement and support.
Johns family became like family for me. His mom is a nurse in Alabama, and I can’t imagine having a sick child (no matter what the age they are, they are still your baby) and not being able to be with them. I felt an obligation to take the best care I could of John and if I couldn’t help I got him the resources that could. He told me all about his sisters, his nieces and nephews, his dad, his grandpa, his lovely fiancée. I felt like I knew them all. The fifth time the tumor came back I had to call John on his vacation at his parents. I always shot it to him straight and he did the same with me. He always told me what he was thinking. That was a terrible phone call and he just said Okay, that sucks but we’ll work though it and I said yeah we will.
His last ditch effort was experimental ion whole brain radiation in Indianapolis. He did well with this treatment but it was radiation everyday that really made him sick, he was weak, dizzy, and nauseated. That is something that never happened before. He bounced back from the other surgeries so wonderfully but this one really kicked his butt.
He came by my office several times just to check in and he was puffy from the steroids, having trouble walking and sick to his stomach all the time. It was usual for John to text me weekly and let me know he was doing ok. Not having the bounce back like all the other times was very disheartening for him. He sat in my office one day and said, I want you to know if the tumor comes back I’m not having any more surgery. I told him I wasn’t ready to discuss that because we weren’t giving up hope until it was absolutely necessary.
On October 9th of 2013, I hadent’ heard from John in a few weeks and I just had a sense that something was wrong. I called his phone, no answer. I called his fiancée, and all I heard was crying on the other line. She said I don’t know what’s wrong, he’s so sick, I can’t get him to the bathroom, he’s falling and in severe pain. In an act of something I have never done, I said give me your address so I can come check on him. I punched the address into my GPS and found them quickly. I walked into the bedroom where he was sitting on the edge of the bed, head down, and in terrible pain. I sat down on the stool in front of him and said, I’m here and I’m going to call an ambulance. You can’t stay here anymore because you are too sick for Witeke ( fiancée) to take care of you. He looked at me in defeat and broke down into tears, and that is the first time he had ever cried in front of me. I called the ambulance and helped get him dressed. With all the steroids and being immunocompromised he had developed Shingles over his right eye and could not raise his head up because it hurt so bad. I got him into the ambulance and called his mom to tell her she needed to get here.
I got a call from the Witeke about 3 hours later and they said he had radiation necrosis (dead brain tissue) and encephalopathy (swelling in the brain) from the shingles and they gave him about 3 days before he would be gone. My heart just stopped. This can’t be, he’s such a fighter, I knew it was bad but not that bad, It’s so unfair. Every emotion you go through with family members or close friends is what I was experiencing. I had never been that close to a patient to have this type of emotional break down. They teach us in nursing school to keep your distance don’t get emotionally attached because that just makes the loss that much harder. That may be true, but showing some emotion just makes you human.
A day after he was admitted his family made it to town and they called me and said John wanted me to come up. He was on antibiotics, high dose steroids and pain medications and he was having periods of being lucid. His mom said he wants to know if he is going to die and he wants you to be the one to tell him and we want you to be the one to tell him. This was the hardest thing I have ever done. I walked into the door and he said “hi babe” I said hi. He said what am I doing here. I explained what happened and why he ended up in the hospital. He said I want you to tell me the truth, am I dying. I had a hard time getting the words past my throat and out of my mouth. I said you are very sick and the medicine is not working, if the medicine does not work then yes you are going to die. He said that sucks, and I said yes it sure does. He saw the tears in my eyes and knew that what I was saying was the truth.
The days went by quickly and each day John’s body began to shut down. He had some periods where he was able to relay things to his parents and sometimes he would just sleep. I sat with him one night so his family could go have some time away. I sat there in silence as he slept and held his hand. He would wake up every now and then and look at me and just go back to sleep. I would not have changed that time for anything.
John passed on Oct 14th of 2013. It was terrible to watch because his body and heart we’re so strong, that he just wouldn’t let go. His heart finally gave out and he went peacefully.
I don’t regret the relationship I had with John because it changed my perspective as a nurse. It’s okay to know people, to help them with what you can, to be that person that can be trusted. I had the opportunity to be with a patient from initial diagnosis through his final transition and nothing is more of an honor then that. I will forever thank him for changing the way I work, for taking that extra 10 minutes to just listen, to smile and be positive because other people catch that, and always do what’s in my nature as a nurse and that is to help without fail.