‘No. It’s only a sinus infection,’ they said. I insisted that my husband get tested. There was a full-fledged yelling match that erupted. ‘All right, all right…After a misdiagnosis of a sinus infection, a woman loses her husband…

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“Have you ever loved someone with all your heart and soul? You knew them better than you knew yourself because you were so tuned in to them? I do… My husband’s name was Raymond Rotolo, and he was a fierce warrior.

Ray and I met when I was 17 years old in the summer of 2003. Ray was 20 years old at the time, and it was pure luck… We met at a wedding where I wasn’t even supposed to be. Ray was the groom’s brother’s best friend, and my elder sister worked with the bride and needed a last-minute date to the wedding.

Ray and I laughed the entire time, and at the end of the night, he asked for my phone number. He asked me on our first date three days later, to see the Glendale Heights fireworks. After that, we were inseparable.

On October 10th, 2008, Ray and I tied the knot. There were ups and downs in life. We had communication issues, financial issues, and other standard growing pains for a young couple navigating adult life together, but we had each other and our lovely dogs, Maya and Kody. They were our children as I struggled with infertility throughout the years. We always knew we were supposed to be together, no matter how rough life was or how many challenges we faced.

On a cold Sunday morning in October of 2012, time stood still. Ray had a horrible migraine when he awakened. Ray was never ill. He was 29 years old and the picture of health. He was 5-foot-11 and 225 pounds, played softball several times a week and worked as a union electrician 5-6 days a week on that construction site. I had a feeling things weren’t quite right.

We waited in the ER for three hours before being told he had a sinus infection. Of course, he felt fine after taking his painkillers, but I knew something wasn’t quite right with him… I requested that the doctor order a CT scan. ‘It’s not necessary,’ he said. He’s fine, as you can see.’ This is when I realized that doctors aren’t always correct, and that in the medical realm, you are your own and best advocate.

When I demanded that he order a CT scan, a full-fledged yelling confrontation occurred. ‘OK, OK, I’ll order the CT scan!’ the doctor finally responded. You’ll notice his sinuses are swollen, and if there’s anything wrong with his brain, which I doubt, we’ll find out.’

He was transported to CT and returned 15 minutes later, irritated that he had missed the kickoff of his beloved Chicago Bears. I was a nervous wreck, but I was also remarkably calm. As he was wheeled in, I said, “How long before we get the results?” ’30 minutes’ says the narrator.

No. 3 minutes later, the same doctor and three nurses rushed into the room, slamming the door shut so forcefully that it slammed against the wall! The staff were virtually rushing around the room, tearing wires from the walls and dumping his belongings on the stretcher. ‘Whoa, what’s going on?’ Ray exclaimed, clearly alarmed. ‘We found a mass,’ the doctor remarked without looking at him or me, simply at the bed. ‘How awful is it?’ Ray inquires. ‘It’s the largest I’ve ever seen,’ says the doctor. He turned and walked out of the room, never to be seen again.

That was the start of our adventure. I went from being a typical 26-year-old housewife to being a wife and caretaker. The next three years and three months were a roller coaster of emotions, with him wondering if he’d wake up the next morning.

Ray had a 14-hour surgery to remove the tumor on October 9th. The time came to a halt. I didn’t leave the room because I was overcome with emotion. I couldn’t do it. I couldn’t tell you what I was thinking, feeling, or doing, but I could tell you about his vital signs. I spent our fourth wedding anniversary caring for the guy I loved more than life itself, not knowing if he would ever wake up, and if he did, would he be the same Raymond?

I quickly understood what all of the machines were for and why they were needed, as well as what prescriptions he was taking and why. The morning of October 14th, my 27th birthday, Ray awoke to his typical self. We received the final diagnosis a few days later. Anaplastic Ependymoma grade 3 is a type of brain cancer that is extremely rare in adults.

Ray was discharged home on October 15th, and he followed up with ten weeks of proton therapy in a facility that Ray had helped build as an electrician less than two years previously. We went on with our lives as normally as possible. We both returned to work, traveled, and grew to love each other even more.

Ray was never irritated or enraged. ‘It is what it is, and I can’t alter it,’ he constantly said. I’m just going to keep doing what I’m doing. ‘What’s for dinner now?’ This individual, you see, was motivated by food and a good time. He was the king of dirty jokes, with a sardonic wit that left you either perplexed or laughing hysterically.

Then, shortly after Christmas, we got the news that no one wants to hear: ‘It’s back.’ Ray had his second tumor resection operation on January 9th, 2013. Doctor appointments, scans, a flight to Houston to see a specialist in his type of brain cancer, and four different types of chemotherapy because none of them worked filled the following few months… His tumor continued to develop, followed by a second tumor on the brain stem.

He underwent surgery for his third and final tumor resection on June 26th, 2014. Ray came out strong once more, but on Monday, June 29th, he suffered from a horrible migraine. His mother and I stayed by his side for the next week. His general health deteriorated rapidly, beginning with acute hallucinations.

He grew quite agitated, and the only way I could get him to sleep was to lie with him and physically rub his entire body to calm him down long enough for him to fall asleep for 20 minutes. I’ve never felt so terrified in my entire life. I begged to be told what was wrong with my husband.

Finally, he was taken to surgery to have meningitis in his brain ventricles removed. Many renowned doctors informed me, “No one survives this type of infection.” He slept for seven weeks and barely awoke once a day for around an hour. Until one day he awoke and, with assistance, walked 50 feet. He was only able to keep going because of his sheer willpower and resolve to survive. We had numerous highs and lows over the next four months.

Ray was then discharged from the hospital four months later to the day. I was pleased to the point of crying, and then worry set in. I didn’t know how I was going to take care of my husband. He now required round-the-clock care, a wheelchair, and a walker for mobility, his vision was impaired, he had lost his short-term memory, and he was suffering from debilitating convulsions, which caused Todd’s paralysis. It took a village to do this.

I had a schedule with my mother-in-law. On the days I went to work, she came and remained with him. I continued to work full-time while still caring for my husband. Ray’s condition deteriorated over the course of 19 months, during which time he lost all of his vision. He spent a year in an intensive care unit (ICU) or a rehabilitation facility. We were never far from his side. Ray was never left alone for more than ten minutes. All the while, I was trying to understand that my husband, whom I adore and couldn’t imagine my life without, was not going to make it.

Ray’s short-term memory loss was a blessing at the time since he lived in the now, confused the majority of the time, but I just accepted it. We had a very real and present talk during one of our stints in a rehabilitation center for one of his devastating seizures, and it’s one I’ll never forget. ‘Ray, why are you hanging on so tight?’ I inquired. ‘How could I leave you?’ he replied. I don’t want to be apart from you or my family.’ Ray spent the last few months of his life at his parents’ house, where he could spend every day with his little nieces, siblings, parents, and family.

Ray was transported to the ER with horrible stomach pains, making the paramedics giggle uncontrollably the entire time because we knew everyone by name by that point. Ray began to deteriorate rapidly while doing tests. I didn’t even have time to process what was going on because everything happened so quickly. Ray’s blood test for Sepsis came back positive, and he needed to be put on life support.

Before I could leave the room, I had to explain what was going on to him, as I always did. ‘Like last time, honey,’ I said. To help you heal, they’ll intubate you and put you to sleep for the next 24 hours. You’re going to be OK. Everything will turn out fine. Raymond, I adore you.’ He nodded his head and said, ‘I love you more,’ through his mask.

Those were the final words he uttered. On January 17th, 2016, Ray went away surrounded by people he loved the most on a bitterly cold Sunday morning.

I was completely lost after Ray died. I had no idea who I was… I was told that I was no longer legally married and was now referred to as “single.” When I’ve been in a meaningful relationship since I was 17, what does it mean to be “single”? That was a 12-year period in my life! I’ve been an adult my entire life. I didn’t know anything else save the fact that I was now a 30-year-old widow.

I took a 10-week grievance course and discovered that I was at least 20 years younger than everyone else in the class. I was all alone. I received a text from an old friend inviting me to hang out, which I did, and it was this that saved my life. I didn’t have much in the way of family support, so most of these people became my family. On Saturday mornings, they assisted me in getting up and dressed, and I relearned how to appreciate life. I also went to Ireland with my brother to see my sister and do some much-needed soul-searching.

Then, out of nowhere, I found myself falling in love again. He knew me before Ray, throughout Ray’s presence, and now after Ray’s departure. He has comforted me when I have sobbed and has assisted me in preserving Ray’s memory at our home. He has been an incredible stepfather to my fur babies and has never failed to support and love me. Thank you so much, Nicholas.

On particularly difficult days, I go to Ray’s seat and tree, which we have dedicated to him and which is now positioned in the middle of Camera Park, where he took me on our first date. It’s right where the fireworks are launched, and it’s now where I can watch them every year from his bench. Every year, I walk and raise money for the American Brain Tumor Association 5k in Chicago, Team Gray for Ray, and Ray Jay’s Blankets, which his mother founded. They’re support packages with handcrafted blankets provided to newly diagnosed Brain Cancer patients at the same hospital where Ray was treated.

I’ve since lost both of my fur babies but knowing Ray has his babies with him every day gives me comfort and peace. I now live my life for Ray, not just for myself. This is a never-ending healing process that will continue till I die. Tragedy changes you; you have no option but to change after such a loss, and I choose to make every minute count and to live my life joyfully every day.

Don’t get caught up in the nitty-gritty, and just love! We have no control over what life throws at us, but we can learn and grow as a result of it. Every day, I talk about Ray, and I know in my heart that I was intended to be at that wedding, not only to be Ray’s only love and wife but also to allow Ray to mold me into the woman I am today. I don’t know who I would be if it weren’t for him, and for that, I will be eternally grateful to the most magnificent man that has ever lived. For the rest of my life, I will miss and love him more.”

The story and photos: Courtesy of Krystal Rotolo

 

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