In 1993 I met the person that would become my soulmate. At a friend’s surprise 40th in a corner standing by himself was Kevin. Whoa, who is the tall guy? I asked my friend and she said “oh, that’s my neighbor, the one I’ve been telling you about.” As it we got to know each other I learned that in 1982 Kevin was diagnosed with a cystic astrocytoma the size of a grapefruit and had an emergency craniotomy. I moved in with him 6 months later and we were never apart from each other that is until 9/14/16. After living with each other for 12 happy years we decided to get married. We had agreed early on that we did not want children…it was always Kevin and Linda. But for the occasional seizure Kevin was otherwise healthy and happy. However, we became a little lax on the annual MRI and missed a few years in a row.
In 2011, six months after Kevin’s mom passed away, it appeared that Kevin was suffering from depression. Kevin always bore a huge smile and had a roaring laughter. He lost his spark so much that I became very concerned and frankly scared. I spoke with his secretary and she blew my mind with her description of Kevin’s mental state; she described it as early stages of Alzheimer’s disease. I called his neurologist who had been treating Kevin since 1991. He ordered an MRI and by the time we got home from the MRI his doctor was calling to tell us that Kevin had a new tumor and needed to have emergency surgery. This time it was a “radiation induced” meningioma. And although the original cystic astrocytoma was benign Kev received the maximum amount of radiation on his entire head. The surgery was successful and he spend a week in an inpatient rehab facility. On his 6 month post op MRI there was a new meningioma. This time it was found very early and he was treated with Gamma Knife Stereotactic Surgery (noninvasive and ambulatory). Needless to say that our outlook on life changed a little. However, we continued on our loving journey of marriage and commitment to each other. In fact our marriage and love for each other became stronger and stronger. Life was beginning to look great again. Kevin worked for a major insurance company and was not beholden to a 9-5 schedule. We decided to buy a bigger home so that he could have a home office. We were so happy and loved our new home.
In April 2015 Kevin’s MRI showed yet another new meningioma; here we go again. This one was slightly larger. He once again had Gamma Knife Surgery. However, by August Kevin was beginning to show signs of cognitive deterioration and was losing mobility. Due to the fact that he was home one of the hardest thing was for me to get a rehab facility to admit him. But I was relentless and finally got him admitted. He was doing GREAT. He got there in a wheelchair and was now using a walker. Awesome! Well not so quick I get the dreaded call Kevin was seizing and was being transported to the hospital. As it turns out he had a 45 minute seizure. He then went to a 1 ½ week psychosis of sorts. I had him transferred to the Columbia Presbyterian Hospital (CPH) where Kevin’s neuro team was based. After 2 more weeks at CPH he was transferred to another rehab facility. Once again he was showing signs of improvement. We go home and all is okay. He was receiving PT/OT/ST 3x per week. And then he started to deteriorate yet again. Apparently, the Gamma Knife had worked, but there was so much debris left behind that it was causing all sorts of problems. At this point the only solution was yet another surgery. The weather forecast for 1/26/16 was BAD, NYC was going to be hit by a record breaking blizzard. He was admitted the evening of January 25, 2016 and we all (surgery team, et al.) slept at the hospital. Kevin was taken in at 5:00 a.m. when he came out of surgery I knew it was different this time. He had a bilateral brain tumor recession. He remained in a coma for 2 weeks and spent an additional 5 weeks in the neuro unit at CPH. I stayed with him every day until the late evenings. I would go home get some sleep, go to work by 7 a.m. and back by his side by noon. It was exhausting, but I would not give up on my buddy or not be by his side. As I said, Kevin and I opted not to have children so it was just the two of us. My siblings all live out of State and my relationship with his brother and sister was stressed to begin with.
Finally in March he was discharged to yet another rehab facility. But by May he had not progressed much. He suffered a few setbacks in between. He caught the flu, he had an 8 minute seizure; which caused an abscess by the incision. That caused another surgery to clean out the skull; which led to a picc line that Kevin pulled and declared he wanted to go home. I promised Kevin when we got married that I would NEVER put him in a nursing home; did I mention that he was he was only 59 years old. And so in seeing him so sad and no spark I marched to the nursing office and told them that I was taking my husband home. It took a week for the equipment to be ordered but home he came. He immediately got his spark and smile back. He even began to feed himself. He had no mobility but otherwise was competent and totally aware of his environment. He enjoyed his many visitors and goodies they brought him. I began to look into purchasing a wheelchair accessible car. In the meantime I hired private ambulettes to transport us to the diner, the doctor’s office, etc. It is now July time for the dreaded follow up MRI. His doctor called me in alone. It was really bad. Kevin had many new meningioma’s all in new areas of his brain…I give him 3 months to live said his surgeon. I took a leave of absence from work, and cared for my husband, my friend, my soulmate until his last breath. He lived for 2 months almost to the date of the MRI. I am angry, lost and so lonely without him. I am 50 years old and I think of all the things that we planned that will never happen. I try to imagine this new future and I find no hope in it without Kevin. Kevin will ALWAYS be My FOREVER. My Soulmate!