The Toughest Three Years of my Life

This is my story of dealing with the deaths of my older brother Macu, my mom, and discovering I had  Crohn disease, all within a three-year period.

Starting in my early fifties, probably sometime around the year 2010, it seemed like every autumn I would get these low-grade fevers accompanied by persistent diarrhea that would last for a month or two.  The annoying thing was that it didn't make me sick enough to not work, so I still went to work and just powered through the day best I could. Anyways I could not miss weeks from work. I would end up getting used to living with it as I had no other choice, but it really sapped my energy levels. This went on year after year. Of course, I went to doctors, they ran tests but were never able to determine why I was getting sick. I remember my primary care physician saying that there's definitely something brewing there.

In late July of 2016, my brother Macu was sick and needed to be taken to the hospital. I picked him up at his Miami Beach condo and took him to South Miami Hospital. Little did we know he would never see his condo again. He was obviously in very bad shape as he could barely walk.  And I was in the middle of one of those fever/diarrhea flare ups.  I took a few days off from work to be with him at the hospital.  He was very weak and obviously in pain.  I was not doing much better, the fevers sapped my strength, the ongoing diarrhea, and my feet were now swollen. I had to wear loosely laced sneakers and used a cane to walk.  It was a case of the sick helping the sick. The typical day was me getting to the hospital in the morning, staying there all day, leaving around 9pm to then do it again the next day. After a week or so of this, I had to leave Macu for our yearly summer family vacation at the Marco Island beachfront Marriot resort. I told Macu I would see him in a week and to hang on. It hurt to do this as he was not getting better, and really, I needed to stay with him, but the vacation had been planned months in advance and my family had been looking forward to it.  

Now its early August and the family and I are on vacation at Marco Island. I was still running fevers with diarrhea and swollen feet, but I was hoping a change of pace would help me get better. The family was enjoying the vacation, but I was miserable. I remember one night we went to a sushi restaurant, and I was feeling so bad I didn't eat anything.  The next day we were relaxing by the pool when I got 'the call' from my sister Diana. She had been staying in touch with the hospital, and she had some terrible news. Macu had stage four pancreatic cancer and was terminally ill. I will never forget that moment.  I  returned to Miami the next day, letting my family stay to finish the vacation.

I took time off from work to be with Macu. I was lucky that I had a lot of vacation time accrued at work and my wonderful supervisor, Gisela Villarino let me stay out for as long as I needed.  I was still sick, but my focus was on being with Macu and doing what I could to make him comfortable. He knew that he was terminally ill but he remained calm and did not really talk about it. Diana came down from Atlanta with Laura and Lisa to visit one weekend. Our cousins Juanchi and Manolito spent a lot of time at the hospital as well.  Manolito especially would try to get him to eat. As the news got out of his condition, many of his friends and family came by to visit. This would lift his spirits. Sometime in late August we were told by the hospital he could no longer stay there for insurance reasons and plans were made to move him to my mom's house for hospice. My mom was old and frail, so we had elected to not tell her about his condition. She had a wonderful live-in caretaker that could attend to both of them, and it would be best for my mom to spend what little time he had left with her.

The next 24 hours proved to be one of the roughest days of my life.  Moving Macu to my mom's house were especially rough. At this point he could barely walk and was in a wheelchair. He was discharged from the hospital on a Thursday morning.  To get him into the car from the wheelchair and then from the car to his bed in my mom's guest room was an ordeal. I would basically hold him up and he would slowly take steps inch by inch.  My mom looked at him with a sad, worried expression I will never forget.  Later that night, I helped him go from his bed to the sofa in the living room. That took forever.  All the while, Manolito got a hold of  Margarita's son, Lucho, who was a doctor at Baptist hospital. Margarita was my mom's cousin.  Manolito explained what was going on and Lucho got him admitted to the Baptist hospital around 11pm that same Thursday night.  We are indebted to Lucho as having Macu in a hospital shielded my mom from watching his slow painful demise. Macu was picked up by an ambulance and taken to the hospital on a stretcher. I went there with Manolito and spent all night in a freezing cold emergency room waiting for Macu to get a regular room. It was now Friday morning, and I had not slept and had an 11pm to 3am gig that night in Ft  Lauderdale.  Around 4pm Macu still had not been moved to a room. I left the Baptist Hospital, went home, took Advil because I had a fever and slept for 2 hours then packed up all my bass and PA sound system and headed to the gig.  My bandmates told me I looked like hell as I had only slept 2 hours in the last 36 hours. I ate 2 more Advil, did the gig and headed home at 4am Saturday morning. Driving back I had one of the scariest driving moments of my life.  All of a sudden, it was like a black curtain went down over my eyes and I could no longer see while driving down the turnpike at 60mph.  I knew I was about to pass out so I held my breath, pushed real hard with my lungs to force blood to my head. Thank God, a few seconds later my vision came back, otherwise I would have crashed. For the rest of the drive I drove in the right lane slowly, ready to pull off the road if I felt that I would pass out. I made it home and slept for a few hours then went back to the hospital.  Macu had been moved to a room which would be his home until he passed.  It had a sticker on the door of a star flying up to the sky. That was how the hospital let nurses know the patient in the room was terminal.

September arrived and Macu was getting worse. Now he was on morpheme pain medication taken every 6 hours. Every day was the same, after taking the morpheme he was comfortable for 3 hours, followed by one hour of moderate pain, and the last 2 hours before the next dose, he was in excruciating pain. He would ask to have his hand held. He told me several times to tell the doctor's to put him to sleep for good.  I told him I would try, knowing full well they could not do it.  About a week before his death, Macu told me to arrange the legal papers so his will would be executed. Macu wanted his condo to go to my kids.  We contacted a lawyer who recommended placing Macu's condo in a trust account that I would hold for my kids. The lawyer came on a Tuesday to the hospital, asked Macu questions as required by law to make sure he was lucid and understood. He answered correctly and was barely able to sign the legal papers, but somehow managed.  Wednesday the next day he started to hallucinate. On occasion he would call out for my father, loudly exclaiming 'Papi!'. I tried to get him to sign some checks to pay his bills but now he was incapable of holding a pen. Thursday, he seemed more at peace. Friday morning, Sonia and I were out retrieving Macu's car from a friend he had lent it too when we got a call from the hospital.  Macu was in the process of dying. I got to the hospital. Manolito and some of Macu's friends from California were there. It was decided I would go get mom and bring her here to say goodbye. On the way to mom's house I got the call, Macu had passed. I went back to the hospital, and Macu's lifeless body lay in bed completely absent of his essence, like an empty shell. That night it fell to me to tell mom about Macu. I arrived at her house, Diana and all my cousins were there, and mom was on the couch. I sat next to her and said 'Mami, hoy Macu de pronto se puso my mal en el hospital y murio de repente.'  She looked at me and said, 'Los hijos no deben de murir ante de los padres.'

After Macu's passing I went back to work.  It was as if a great weight had been lifted from me and he was no longer suffering.  I was still running fevers, etc..., but I was hopeful I would get better, which I gradually did.  Christmas 2016 came and went. Hopefully 2017 would be better. Life went back to normal but now my Mom started to get worse. She started having urinary infections and gradually became weaker. By the fall of 2017, Diana moved in with her as she had trouble walking and eating.  She was in and out of hospitals during Christmas 2017 and sometime thereafter in early 2018 she became totally bedridden, paralyzed and stopped talking. Diana took care of her with help from Susana,  her wonderful live-in caregiver. I would go there at night and play Bob Ross videos on my laptop by her bedside which I knew she liked and would watch.  But the once proud grandmother who enjoyed playing with my kids was now paraplegic with an empty stare. I don't know how much awareness she had, if any. One day, she locked her mouth shut and stopped eating or drinking.  The hospice nurse who came by every day said she would pass within a week. The day before she passed, she became euphoric and looked better. Susanna thought she was recovering. The next day on May 21, 2018, she passed peacefully at night, with Diana by her side. 

Again I went back to work, feeling like another weight had been lifted. Surely things would now get better. Little did I know I was about to face the worst health nightmare of my life.

In the fall of 2018, the fevers and diarrhea returned full force. Additionally, my enlarged prostate now was making it very difficult to pee. I was really frustrated and somewhat depressed about my health. It interfered with living a normal life. My gastroenterologist decided to do a colonoscopy in October 2018.  The colonoscopy showed that I had Crohn disease which is a condition where my immune system attacks my intestines. Finally we knew why I had fevers and diarrhea all the time!  Now maybe we could do something about it!  I was put on a drug called Mesalamine which seemed to help.  Christmas 2018 came and went.  In early 2019, my prostate was operated and I could pee again. Halleluiah. Things were looking better.  Then in February of 2019, all hell broke loose. My immune system declared war on my body. It attacked on all fronts. The fevers and diarrhea came back like never before. My knees became arthritic and I could not walk without a walker. My feet got painful sores that looked like my skin was burned. My mouth had sores and it hurt to eat. I lost 17 pounds and my weight dropped to 142 pounds. I missed weeks of work. The doctors put me on prednisone, which is a strong steroid that suppresses your immune system. It is only used in extreme cases because steroids harm your body.  Immediately I started to recover. After that they put me on two powerful drugs, Humira which suppresses the immune system and Methotrexate, which helps with arthritis. It took me about a month to recover so that I could go back to work. Finally, the fever, diarrhea, knee pain and sores were gone.

It was now late spring in 2019 and I was back to a normal working life.  But all the pain and misery I had gone thru got me thinking that life was short and maybe it was time for me to look at whether I could retire and enjoy a stress-free retirement. It did not go unnoticed that on my last birthday, I had become 100% vested in the company retirement pension.  This meant I would have three sources of retirement income, the pension, social security and my 401k savings. I did the numbers and sure enough, it was enough to retire reasonably comfortably. I'll never forget walking into my boss Gisela's office and telling her my time had come.  She did me a great favor. Knowing that in a few months there would be company layoffs, she got me laid off which gave me a nice compensation package. I will always be indebted to her not only for that but also for my entire career.

On August 5, 2019, I walked out of the office for the last time and began the next chapter of my life, healthy at last.