Sorry about the delay in this update. Life is just a struggle these days.
It is very difficult what to say in this update. Get a glass of wine because this is going to be long!!
Jerry continues to decline. He has a “little better” day occasionally, but pretty much it has just been a slow decline. He sleeps a lot, just too exhausted to stay awake. He has little appetite, cannot taste food. He will think something sounds good, I fix it, he eats a few bites and just cannot eat any more. Sometimes he cannot even stay awake long enough to eat.
A neighbor (whose husband is fighting cancer) told me about a Boost product with a whopping 530 calories!!! I put that in the blender with some fruit and a big scoop of ice cream—so he gets some calories each day. He has lost about 20#.
He continues to have an amazing amount of fluid accumulating in his chest. I have the equipment to drain it out—it is around 1 Liter every 36 hours. When it accumulates, it presses on the lungs and he cannot breathe.
He is on oxygen all the time---just taking it off to go to the bathroom, and that’s about it. He was able to get by with a cane part of the time until a couple of days ago, and now, he does not take a step without the walker.
Until a few days ago, he was in amazingly good spirits. Then, it got to the point that if anyone called or came by, he would put on a happy face and people would think he was doing okay. The past few days, he has become very depressed, and the happy face is gone.
Nov. 2 he had a PET scan. The doctor would not release the results. We finally saw him today. Jerry was to have another infusion. The results of the PET scan showed that the treatments were not helping. The nodules, masses, etc. have multiplied over the past month. Some doubled, tripled, quadrupled in size. And there is a lot more involvement in the bones.
The doc wants to put him on a different type of treatment. Where he has been taking immunotherapy treatment, this will be chemo. Jerry has a rare genetic strain that is what is making this so aggressive. Apparently only about 5% have this type (leave it to Jerry to be different!). Chemo does not work on melanoma, but the doc wants to try. I asked what the odds are of it helping---he said 50-50---and I think he was being overly optimistic. I asked the doc what the medication was, since I read all I can about what is going on. He did not know!!!!! He said it is a big word and cannot remember it. Anyone wonder why I have had no confidence in this guy?????
We will have a “class” on the medication so we know what to expect. The only thing he would say is that one of the side effects is a very high fever---103-104 is not uncommon. I wish I knew what it was so I could be prepared with questions—which they don’t like.
Oh, Jerry had a brain MRI a few days ago. The hospital posted the results and it indicated that he had a cerebral infarct within the previous 7 days. This was a small stroke, and I know exactly when it happened. The doc failed to mention this—saying that there was nothing but “old age” reflected on the test. I still don’t like and don’t trust this guy---but we really have no option at this point.
Jerry has been very quiet this afternoon. He does not talk to me and share his thoughts and feelings—he is just holding it all in. I'm really not sure how much he understands of what the doc said--just that the Keytruda was not working and we would try something else— of course he did not go into the detail that is shown on the written report that I have read.
We will know more after we have “the class” and see what the side effects are---and if Jerry goes ahead with it, or just accepts the reality. He did comment a few minutes ago about how fast he was going declining. I said—yes---I see him declining daily. Quality of life is gone.
He has been hungry for a steak----I fixed a beautiful rib eye----he ate a few bites, but could not eat any more. He is drinking a Boost 530 calorie drink with a bunch of ice cream in it. Calories however I can get them to him.
I am preparing a full Thanksgiving dinner---turkey & dressing, sweet potatoes, mashed potatoes & gravy (which is about all he will eat) pecan pie, pumpkin pie. I have no idea what I will do with all the food. It will just be my grand daughter, Jerry and I. A couple of friends might drop by, but I don't know yet.
Christmas trees are up and lit up every day. Just anything to cheer him up. He knows it is his last Thanksgiving and Christmas.
@texastribble I liked your post, although it would be better if there was an emoji for a hug! Because I am sending a great big one over to you, right now. It is so difficult to see this decline, isn't it? And to be thinking of all the details you have to keep on top of, well, I imagine it must bring you a lot of pain in your heart.
How are you holding up? Is there a social worker or patient advocate that you can connect with, to help give you a steady foundation as you traverse this period? Are you journaling your thoughts and feelings? I hope that Jerry will open up a bit to you, and tell you what is on his mind, if there are things unsaid that he would like to share. That is important for both of you.
You have a lot of knowledge to help manage his case from home, and I am sure that gives you a sense of relief. Hopefully, Jerry feels like he is in good hands with you. How disappointing to hear some of the medical team don't want to be upfront! Like you need that frustration right now, right?!
Each day brings a new hug from me to you.
Ginger