We've come so far

 It has been a journey since last I posted. Jack has been on Keytruda for so long. His lung cancer doesn't even show up on his CT scan but the doctor won't say remission. Then in September of 2024 a tumor on his liver showed up. It was biopsied and is a different cancer. Hepatocellular carcinoma. There were some treatments for it that we went to find out about. They sounded scary and he might get sicker. His quality of life is no fun. He (we) decided that it might be better if the cancer killed him than if the treatments put him back in the hospital. 

That's where we are today. After a severe bout of acute pancreatitis, and 4 days in the hospital he is home and under the care of Bristol Hospice. That means a fentanyl patch and two drugs Audra fought to have him on for the pancreatitis. For awhile it was very debilitating for him. I don't know if it was the drugs or recuperating from the pancreatitis, but he is on his feet again. Doesn't use the walker. Only his cane. He gets up himself and also puts himself to bed. I am just his pill dispenser and shadow.

 This is a relief for me because though there are people who would be here for me, I am alone in this. Since he is back on his feet, I can go outside and garden. My mental health benefits from that. I can leave to go to the store. I didn't  see this as possible 12 days ago when he came home. For now, things are looking up.

It's day by day and today is a good one. Maybe not for Jack who hopes for more but doesn't get it. He has Ativan and won't take it. Sometimes I need it but don't take it. This is as hard as life has ever been for me. But I will manage to do whatever needs to be done. 

Thank God for the good days.

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.

This month our lives have been ruled by threats of cancer. It takes over your thoughts and feelings and enters every “node” of life. It becomes the king of the waiting game and meanwhile grows and grows until every cell of the players are involved. What a cruel ruler it is. And yet...time stands still and players are permitted to redeem themselves. Life itself is seen as fragile and sacred and a thing  to be relished. Is that a gift of the cancer itself?

I never make home fries without thinking of my Aunt Jane. She made the best home fries and she said it was because she cooked them in butter.












She also taught me the poem that goes with Blue Willow Ware. It’s my favorite pattern of dishes and I own it properly now.


The poem goes:

Two swallows flying high
A little ship sailing by
Two men on a bridge maybe three
Next you see the willow tree.
A Chinese castle there it stands

It must have been built by the king of the land.
A Cherry tree with cherries on.
A fence below to end my song.

Bestest Son in the world

I am sitting here and I am very nervous. My son is coming to take me out to dinner and I’m scared. I don’t want to talk too much. I don’t want to let him know how I’ve been feeling. I hope that I can listen and learn about his life. No politics. I’m trying to give up on that. I don’t know how long it’s been since it was just the two of us talking. We always had so much in common. Now, I don’t have anything to tell him that is good. What will he think of me? Hopefully I’ll never know. I’ve never been so unsure of myself. He’s on the way.

It wasn't hard at all. He's still my boy, and I'm still his Mom. I just love him to bits!

Goodbye Evidence

Today I am getting rid of 18 years of diaries that I kept to record my life for the future. Now I realize a few things: no one will read them; if anyone does they could get the wrong impression. Mostly I wrote when I was happy or when I was sad or confused or mad. My son wouldn't read them. My daughter would be unhappy if she did. It was hard to stay sane day after day with teenagers and perfection that I felt pressure of from Jack. I've been walking on eggshells for so many years and to release these books would crush those shells and ruin it all. No one should know my worst thoughts.

These are two of the shirts I made and embroidered for my love, Jack. The third one is one I made for myself. I always loved that design. I have them saved with other things from our past. I just love the old things. I was pretty good at embroidering back then. But I think I am better now. I've been practicing a lot.