Fighting the Battle

After the four surgeries over Thanksgiving, his body was very weak from the surgeries and the eight days in the hospital with limited movement. He was frustrated about missing the activities of the Christmas holidays, his favorite, but fought hard to walk again and returned to work in January.

Then, in February, he began to feel lethargic again. We thought it was because he was removed from the steroids as they had run their six month course. Yet, his doctors in Cleveland felt he needed to be seen again for further testing. He was admitted on March 9, 2019. The kidney biopsy confirmed that he had amyloidosis as the disease had now spread to the kidneys. On March 17, Ohio’s governor ordered that all hospitals could not have visitors. Administration allowed me to stay through March 21 as I explained that I had not been out of the hospital since March 9 and therefore was not bringing in any new germs. Yet, the medical teams powers were stripped by the politicians at that time, and I had to leave him. (I don’t want to bring in politics at this time. Ohio’s governor is Republican, and Kentucky’s is Democrat. Both made poor decisions that cost us time.)

He was released from Cleveland on March 31 to Frazier Rehab. We were so excited, because Frazier was allowing at least one visitor. We would be allowed to see one another. Yet, on that same day, Kentucky’s governor overpowered the medical team and removed that privilege. That was a difficult day for both of us. No one, except possibly the medical team seeing the mental anguish daily, can know how not having your loved ones to support you affects physical healing. Yet, Bob fought on. On April 21, the day before his birthday, I was allowed to visit because I was being trained how to help him in and out of the car, into the wheelchair, and all the equipment to help him walk again. We were so excited! We practiced again on his birthday, then he got to come home on April 23. We were again back at home with meds and a bright outlook.

In July, he was having balancing problems and stomach issues. We went back to Nortons, who sent us back to Cleveland to their Amyloidosis center. By this time, I could at least be with him as the one visitor. He had test after test, but couldn’t find the cause of the Amyloidosis. Hence, it was determined that it must be the HS. We were again sent home with a different set of meds. We remained hopeful that we could get the HS under control, which would then control the Amyloidosis. The distressing awareness that both diseases were incurable didn’t phase our hopefulness. We were sure we were going to win this fight.

Yet, both of us were quietly concerned. In hindsight, I can see the signs of anticipatory loss that we were both displaying as the Amyloidosis continue to spread and affect his peripheral nerves and gastrointestinal system.

More on Anticipatory Loss next week.

Profoundly Changed

It has taken some time, but I am now ready to share with you that my amazing husband, Bob Rose, went to be with Jesus on October 20, 2020. This has changed my life in so many ways that it feels like I will forever be finding my footing again. One of the early things I heard myself say over and over again is, “You marry someone, because you can’t imagine your life without them. Then, when you have to really do life without them, it’s unimaginable.”

Because I am learning so much more about grief, this blog will shift to help others in grief as well as counselors helping others in grief. And, it will move to weekly posts rather than biweekly. First, we will begin with telling the story of that amazing man.

He fought the disease for six years, and I was convinced that we were going to win. We were going to get to be that old married couple in rockers on the porch. Well, really, those rockers are on the deck, but you get the picture. We had actually bought matching navy blue cracker barrel rockers, because he was a NAVY veteran. We were ready.

The fight began in the Summer of 2014. We were sitting on the beach when he called my attention to a rash that had become very infected over the course of our time on Madeira. We thought it was just a reaction to the salt, sand, or something in the air that he wasn’t used to. Yet, it didn’t clear up when we returned home. This started our trek back and forth to Cleveland Clinic, the local Norton’s Brownsboro Hospital, and so many doctor’s appointments and surgeries that I lost count. It was first simply Hidradenitis Suppurativa (HS), a chronic skin condition. Although that was annoying, it wasn’t terminal.

Yet, over the course of time, the HS caused a rare disease called Amyloidosis, which was first misdiagnosed as Sarcoidosis in July 2019 as it was centralized in the heart. He received an ICD (Implantable Cardioverter Defibrillator), which acted as both defibrillator and pacemaker, and he was placed on steroids to address the Sarcoidosis. We thought we were out of the woods.

He loved his job at Louisville Gas and Electric and continued to work, because he was also convinced we were going to kick this thing. Then, in November 2019, the skin infection caused four surgeries over Thanksgiving week. Our children cooked Thanksgiving dinner and brought it to the hospital. I am so grateful for that, because that was our last Thanksgiving together. This was the beginning of the end, but neither of us saw it.

More on this last year next week.