In January 2020, we came back from Portland, Oregon with both of us really sick with what we thought was a bad flu. I kicked it after a couple weeks but Jim never quite got his strength back. He’d come home from work at 2 pm and go straight to bed.

In early Feb. , he got bit by something on his hand and it swelled up huge, so I took him to ER. As part of their triage, they did a chest X-ray and found a mass in his upper left lung. A subsequent biopsy was unable to retrieve any cancer cells, so a different kind was planned.

The second biopsy never happened. He came home from work one day, and went straight to bed again. He started slurring his words, was confused and disoriented. I called 911 and they said he may be having a stroke, so they sent an ambulance.

At the hospital they administered steroids and anti seizure meds. Over the course of treatment a brain CT was done, and several masses were found. He recovered rather quickly from stroke and was sent home to begin treatment. Note that he NEVER saw a neurologist.

We saw an oncologist and they began radiation on his brain. He was scheduled for ten treatments over the course of two weeks. After each treatment, he got progressively sicker, often throwing up before we even left the parking lot.

After his 6th treatment, he collapsed with another stroke and fell in our bedroom. Again I called 911 and he was rushed to hospital. He was treated with same meds and put on a ventilator to help him breathe.

The pandemic was just getting started in mid March and visitors were not allowed in hospitals, so I was not allowed to see him. Three days after being admitted he had a craniotomy. The neurologist found that he did NOT have cancer, instead he had encephalitis.

The neurologist removed the 8 masses, drained the infected fluid and told me the radiation had done more damage than good. After a few days, Jim was transferred to an acute care facility to complete his antibiotics, and start light rehab. At this time, he was able to talk.

At the acute care facility, he got progressively worse. He stopped eating and had to have a feeding tube inserted. Over a period of about 6 weeks, he stopped talking, moving or responding in any way. They recommended hospice care to me, and I was so upset.

His neurologist was called in and after tests he discovered Jim had pockets of fluid in his brain. He thought that we should try having a shunt installed in his brain to drain off the fluid and relieve the pressure on his brain. He was transferred to the hospital ER.

While he was in the ER waiting for a room to become available, I was finally able to see him, after 7 weeks of seeing him only on FaceTime with the help of a nurse. I was horrified. He’d lost at least 60 pounds and was completely unresponsive.

I stayed with him for hours, holding his hand, crying and begging him to keep fighting. I am not a real religious person, but I prayed so hard. I asked God to please save him. But if He couldn’t save him, I asked that He not make him suffer any more.

We had talked about this kind of thing during our marriage, and I knew Jim would not want to be kept alive like that. I stayed with him until he was moved to ICU. The next day they did multiple tests on him, and the staff doctors were not fans of him having surgery.

I talked to the staff neurologist, and told him what Jims doctor wanted to try and begged them to do the surgery. Two days later, Jim had a shunt installed. The next day, he was talking again! He was confused, and hallucinating some.

The doctors did not know what level of damage the strokes had done, and how much memory he would recover. I felt it was a miracle that he was talking and moving and my hope for a complete recovery, while unrealistic, was high.

He was the transferred a few days later to a different long term care facility to continue recovery and begin rehab. He was there about three weeks, and I was able to visit him daily. He always knew who I was, but sometimes couldn’t remember my name.

I got a call at midnight bout three weeks into his recovery telling me he was being taken to the ER with a heart rate of 140, and trouble breathing. He was taken to a hospital which did not have visitation, so I couldn’t be with him again. There he was put on a ventilator.

I thought I was going to lose him this time. He was on the ventilator for 5 days, and once they removed it, he was able to breathe on his own. He was diagnosed with a MRSA infection and pneumonia, which brings us to now. He is on steroids, potassium, albuterol, and antibiotics.

They “finally” did a covid-19 test on him (I had asked for one several times), and he tested negative. All along I had been reading as much as I could on covid, and his issues and found several articles about the covid virus manifesting itself in the brain.

I brought it to doctors attention, and they thought I was nuts. But I have ZERO doubt that we both had it in January. His ended up as a brain infection.

So right now, he is still in the hospital, dealing with pneumonia and a blood infection. I am now able to see him every day.

People tell me that I am being so strong, or brave. I’m not. I’m being his wife. I am a four time cancer survivor. He took care of me through every chemo treatment, when I couldn’t even keep water down, through 6 weeks of radiation, through four surgeries.

He did things for me no man should ever have to do for his wife. And never complained once. Now I will be there for him. No matter what happens. No matter what level of recovery he has, no matter if he forgets my name occasionally. This man is my life. My soul. My heart.

I will never stop fighting for him or for our life together. Yes it gets hard. Damn hard. And I cry. In the hospital bathroom. In the parking lot. In the darkness.

I share his journey here as a therapeutic way for me to keep sane. My twitter family is always here for me.

I can’t tell you all how grateful I am that you let me get it out. Whether it’s good news or bad, I know you all care. You support me, you pray for us, you share your own battles.

You give me hope. And for that, I am blessed every day.

Tues July 7
Got a call from Jims insurance case manager telling me his dr had ok’d his transfer back to the rehab facility. No one from hospital had called me with this news.

I freaked out, threw on clothes and rushed to the hospital, afraid I’d miss seeing him one last time.

Walked into his room, and there’s a complete stranger lying there. Now I’m really upset. Went to nurses station to find out if he’d already been moved. No she said, they’d moved him to a new floor. My heart started beating again when I found him.

He looked and sounded much better, not as congested, more coherent. I explained to him that he would be getting moved back to rehab, and that I wouldn’t be able to visit him. And his eyes teared up. Which is SO not like him.

I held his hand, and promised him it would be ok.

That he would get stronger and maybe come home in a few weeks. Then I told him about me walking in on a stranger in his old room and he cracked up. He let me brush his teeth and clean his mouth, then put his oxygen thing back in his nose.

He’d refused to let the nurses do it.

I sat with him till about 7 pm when he fell sleep. I hope I’ll get to see him tomorrow before they move him. It’s so hard not being with him.

I felt like we’d turned a corner today. That he would start improving now. Maybe it’s just wishful thinking.

But it’s all I’ve got.

Jim is supposed to be transferred back to rehab some time tonight. He will most likely go to a skilled nursing facility that he was in before for an intermediate level of care first.

If so, then I may be able to visit him.

Sunday, July 12
Just wanted to update this thread about hubby. Well he “was” going to be transferred back to rehab, UNTIL I found out where. The place they were go8ng to send him had 36 cases of Covid and 8 deaths! I said fuck no! He is not going there!

He will either go back to where he was, or the place before that! His case worker was speechless for a moment, then says ok, I’ll let you know. So he is still in the hospital which is fine with me because I can see him every day!

The good news is, he’s doing great! He’s much more coherent and can carry on a conversation. His speech is clearer and he looks great! Honestly he hasnt looked this good since March! I am soooo happy. I think he will be able to really tackle rehab now! Thank you all for

Good news today! I found Jim an acute care facility that specializes in brain injuries. It’s a small, 24 bed facility that is a top five hospital in Nevada.

I’ve made arrangements, got it approved and he will be transferred tonight. Best part is, they are allowing visitors!!