IN SICKNESS AND IN HEALTH- WHO WOULD HAVE THOUGHT

 Written on October 25,2021     IN SICKNESS AND IN HEALTH

Several things have happened in this uneventful life of ours. The biggest was when Jack had a confirmed diagnosis of non small cell lung cancer in December of 2018. His lymph nodes were squashing his vocal cords and that was why he went to an ear, nose and throat doctor in early October. It took three months to get the biopsy,  the appointments and the stage 4 diagnosis.

We were shocked! What would this mean for our life/lives and our futures? Jack used our Thanksgiving dinner that year to share the news. Our kids and their families and Peggy and Patty and Lisa and Catharine were there. It had a bit of drama and I didn’t know he was going to do it.

At the end of December, Jack started treatments with Keytruda because he had a PDL-1 of 100% which meant the drug should work. He had infusions of Keytruda every 3 weeks. It was paid for by Merck, the makers. He didn’t get sick like he would have with chemotherapy. It held off the cancer. His hoarseness went away. He was able to go to happy hour, a habit he’d had since the 90’s. 

But it suddenly started to attack his body one organ at a time. Low sodium was his first trip to the hospital. He was kept for several days. They tended to blame it on blood pressure medicine he was taking. I said, Keytruda. Next, he got so sick that he couldn’t eat without gagging. Audra’s doctor helped some by telling him he had to drink 8 bottles of Ensure each day if he couldn’t eat. And he couldn’t. He did that for about a month but one day we both thought he was dying. I told both our children if they wanted to see him they better come soon.Weakness and fatigue caused us to have hospice come because no one could help.

First thing they said was, “you’re not dying today.” We found them so helpful. The nurse who visited every week got Jack on Prednizone, Fentyal, cylestra, Ativan and oxycodone and  all the pills he needed to cope with the side effects. Glen walked in a day later because he couldn’t reach us by phone and we told him Jack was dying. He left that day crying like a baby on me.

The amazing thing was that Jack got better! The nurse said from the last CT scan done by Dr Weart showed not cancer. (On hospice you cannot have any remedial help from anyone.) She told us to go on our vacation and enjoy ourselves.We were able to do that. For the first time I did the driving and Jack the navigating. The kids sure were glad that things had gotten so much better.

Hospice continued to help us that summer. We had a second chance at life. And then Keytruda hit Jack again. This time he was dying of thirst, Peeing constantly and drinking sugared tea and  sport drinks all the time. The nurse said it could be his sugar and we should test it. Peggy had the kit but I never went to get it.Then all of a sudden he was dying again. The nurse sent us to an emergency center and told us not to let them send us to the hospital. But they had to! Jack’s sugar was an all time high of 1058! 

And suddenly we were on our own again . NO more hospice. Days in the hospital for sugar to come down. Then Dr. Liu who had seen Jack when he had the sodium crisis took charge.She was very strict with me. Took Jack off prednizone, the only drug he was still on and put him on another steroid at such a low dose Jack had a hard time. When he got out of the hospital this time, he was totally under her care. We liked her. She knew what she was doing. He took injections in the stomache three times a day and poked his finger about six. But his sugar was stable now and under 100. But he was diabetic. 

However, Dr Liu said he was adrenal insufficient and that this could kill him. Wear a warning bracelet and take major doses of hydrocortisone for the rest of his life. He’s still seeing her and his sugar is low enough that he doesn’t believe he’s diabetic, but Dr Liu says he is.

And then, in my mind, Keytruda struck again! By summer of 2020, Jack couldn’t see to drive or read or make his miniature buildings. He was almost blind and so depressed. Dr Robinson was the optometrist who always treated us. His eye pressures were over 40! She sent him immediately to an orthamologist that day. And poor Jack had to add on 2 different drops, 3 Times per day. After months his pressure was so low I thought too low. But it wasn’t. He’s got pre-glaucoma and must take them all his life. No one else would ever consider that Keytruda was affecting his eyes. He was off it by then with great CT scans. But if they had researched like I had, they would have known it could have been the culprit.

Jack’s eyesight still was cloudy and blurry and crippling him. So he had a cataract on his left eye removed in September.  He could see for a day or two and then back to blindness. Dr Young kept treating him for dry eye but never got anywhere and kept Jack going back uselessly. I got him to go to an optometrist who explained dry eye and prescribed Xydal and then Restasis. They did the job. (Needless to say, I was pissed at another doctor. Dr Young1) But it took months for Jack to find this solution. And then they said he should have the right cataract removed for better vision. So he did. I think it was in May or June of 2021. He was all better and is back working on his buildings.

Now he suffers tremendously from fatigue. He’s been back on Keytruda since September 2020. The dose is different and the doctors swear that they will stay on top of things. But they haven’t. So I looked up fatigue and discovered that anemia can be the cause. He told the doctor and the doctor said his red blood cell count was fine. Then he called back and said that he wanted Jack to have two infusions of iron because his red blood cell count was low. So that is where he is now. He will be having them in November and we hope they will help him. However, he can hardly walk. He has so much pain in his knees.

We’ve been very lucky with all of this. It’s changed his life so much. He still smokes cigarettes, like a fool, but he never has a beer. It makes him feel funny with the meds he’s on now. No more Happy hour. He’s stuck at home with me, and I’m not good company. We’ve had some ups and downs before all this and now we both leave the other alone. 

The End. Too long and complicated but I couldn’t post anything else until I’d done this. Now I’ll get to other events in our life.