Penile melanoma --Melanoma is NOT just skin cancer!

Jerry got to come home today!!! YEA!

The change is amazing!!’ He feels better now than he has in weeks. I think they released him too early last time and instead of recovering he just went back down. His color is good and he just feels so much better.

They drained another 2.2L off this time. They put a catheter in and I will now drain it periodically to keep it from building up. He sat out in the patio for a while—which he had not done since he came home from the last admission. Neighbors came over to check upon us—had some wine—the guys a beer—had a nice visit! Life is looking up—at least for now. He is sound asleep in his comfy bed.

Jerry got to come home today!!! YEA!

The change is amazing!!’ He feels better now than he has in weeks. I think they released him too early last time and instead of recovering he just went back down. His color is good and he just feels so much better.

They drained another 2.2L off this time. They put a catheter in and I will now drain it periodically to keep it from building up. He sat out in the patio for a while—which he had not done since he came home from the last admission. Neighbors came over to check upon us—had some wine—the guys a beer—had a nice visit! Life is looking up—at least for now. He is sound asleep in his comfy bed.

Great news! I was so afraid things were going to continue on that bad trajectory so I’m happy for you. PTL!

Is he going to continue with the Keytruda now to try to put that cancer in its place? Praying things continue to get better.

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.

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.

I am doing a copy/paste of what I put on Caring Bridge earlier today. There really is not much more to be said.

As in the previous update, Jerry is not doing well. This cancer is a very aggressive strain and he has a rare genetic strain that makes it worse. The Keytruda infusions did nothing for the cancer--it continued to spread and the treatment made him miserable. The cancer has invaded virtually his entire body. He continues to decline daily. He is totally miserable. He is not talking and sharing his feelings, but I know what he is thinking.

The doc wanted to do chemo--but admitted that there was only 50-50 chance of it doing anything to stop the cancer. And, even if it stopped the cancer, it would not do anything to enhance his quality of life. So, In my opinion---why bother??? It would only prolong his misery.

I finally I sent a note to the doc and said enough is enough. He is miserable. He is declining daily. He did not know I had sent this note to the doc, but when we talked to the doc (had to do a video visit because he was too weak to go to the office) he just said he would "pull the plug if he could"---doc did not understand (DUH how much clearer could he be) I just said, if he was on a ventilator he would pull the plug. Anyway, he agreed to withdraw and let Hospice step in and do what they can to make him comfortable.

The previous doc, a melanoma specialist in Dallas, had not recommended treatment in the beginning. He said the treatment would be worse and kill him before the cancer. I think he was correct. But, the new doc (closer to home) convinced Jerry that he would be fine. I distrusted and had no confidence in this guy from the beginning---and unfortunately, I was right. Jerry--old school---think docs walk on water and are not to be questioned. And, there was no need to continue with one of the best specialists in the country since they all know the same thing!!!! Sorry---I get on a rant about this!!!!!! I worked in the medical field too long and saw too much to just shut my eyes to such. But, it was his decision and I could not convince him otherwise, so respected his decision and supported him in it.

A Hospice nurse was out yesterday and did her evaluation, made some recommendations, and ordered some equipment.

The new Hospice nurse was out and did vitals, etc. She will come weekly unless needed more. They have nurses on call 24 x 7 for whatever is needed.

Hospice uses a different oxygen supplier--so more Oxygen was delivered a few minutes ago. The previous concentrator would only deliver 5 L/min and sometimes that was not enough, so a larger one was delivered which will deliver 10 L/min. I hope he never gets to the point of needed that much--but the last hospital admission he was on 10 L for quite a while!

There should be more equipment delivered later---wheel chair, a walker that he can turn around and sit on if he gets too tired to get to where he was going. There are so many items that Hospice provides to make life easier for both of us. Things we don't want to think about --bedside potty chair---but grateful that we will have then when needed.

The Hospice folks will deliver more equipment and such today and start doing whatever they do to help him. I think/hope that within a day or so he will be less miserable. But---still---the cancer is massive and growing very aggressively. Time is short, and all we is want is for it to be a peaceful transition and he not suffer any more than he already has.

Additional from Caring Bridge post---most of the time, his breathing is so shallow it is hard to see that he is breathing. I just warmed up a little tomato soup with a lot of milk to cut the tartness---he is sipping on it. He has not eaten in 3 or 4 days. He just says he is not hungry. I wonder if he is going into the starvation mode that is common in the last few days.

I am doing a copy/paste of what I put on Caring Bridge earlier today. There really is not much more to be said.

As in the previous update, Jerry is not doing well. This cancer is a very aggressive strain and he has a rare genetic strain that makes it worse. The Keytruda infusions did nothing for the cancer--it continued to spread and the treatment made him miserable. The cancer has invaded virtually his entire body. He continues to decline daily. He is totally miserable. He is not talking and sharing his feelings, but I know what he is thinking.

The doc wanted to do chemo--but admitted that there was only 50-50 chance of it doing anything to stop the cancer. And, even if it stopped the cancer, it would not do anything to enhance his quality of life. So, In my opinion---why bother??? It would only prolong his misery.

I finally I sent a note to the doc and said enough is enough. He is miserable. He is declining daily. He did not know I had sent this note to the doc, but when we talked to the doc (had to do a video visit because he was too weak to go to the office) he just said he would "pull the plug if he could"---doc did not understand (DUH how much clearer could he be) I just said, if he was on a ventilator he would pull the plug. Anyway, he agreed to withdraw and let Hospice step in and do what they can to make him comfortable.

The previous doc, a melanoma specialist in Dallas, had not recommended treatment in the beginning. He said the treatment would be worse and kill him before the cancer. I think he was correct. But, the new doc (closer to home) convinced Jerry that he would be fine. I distrusted and had no confidence in this guy from the beginning---and unfortunately, I was right. Jerry--old school---think docs walk on water and are not to be questioned. And, there was no need to continue with one of the best specialists in the country since they all know the same thing!!!! Sorry---I get on a rant about this!!!!!! I worked in the medical field too long and saw too much to just shut my eyes to such. But, it was his decision and I could not convince him otherwise, so respected his decision and supported him in it.

A Hospice nurse was out yesterday and did her evaluation, made some recommendations, and ordered some equipment.

The new Hospice nurse was out and did vitals, etc. She will come weekly unless needed more. They have nurses on call 24 x 7 for whatever is needed.

Hospice uses a different oxygen supplier--so more Oxygen was delivered a few minutes ago. The previous concentrator would only deliver 5 L/min and sometimes that was not enough, so a larger one was delivered which will deliver 10 L/min. I hope he never gets to the point of needed that much--but the last hospital admission he was on 10 L for quite a while!

There should be more equipment delivered later---wheel chair, a walker that he can turn around and sit on if he gets too tired to get to where he was going. There are so many items that Hospice provides to make life easier for both of us. Things we don't want to think about --bedside potty chair---but grateful that we will have then when needed.

The Hospice folks will deliver more equipment and such today and start doing whatever they do to help him. I think/hope that within a day or so he will be less miserable. But---still---the cancer is massive and growing very aggressively. Time is short, and all we is want is for it to be a peaceful transition and he not suffer any more than he already has.

Additional from Caring Bridge post---most of the time, his breathing is so shallow it is hard to see that he is breathing. I just warmed up a little tomato soup with a lot of milk to cut the tartness---he is sipping on it. He has not eaten in 3 or 4 days. He just says he is not hungry. I wonder if he is going into the starvation mode that is common in the last few days.