late stage NHL ?

miss maggie

liltazcat said:

few set backs
This virus is not good. They say it is JC virus which lies dormant in everyone since childhood. When the immune system becomes compromised the JC virus can become active and develop into a viral infection called PML.
He had a couple of better days, where he seemed to be improving. Then Thursday symptoms of a mini stroke (couldn't use right hand or leg) CT scan normal. Then on Friday the seizure came. It was a bad one, took them 45 min to get it stopped. He was then in critical shape throughout the remainder of the day. Saturday morning doing alright, but the nurses having trouble drawing labs, and flushing his IV site was painful. So the IV team felt he would benefit from a pic line. So they put the pic line in and right after he had another seizure. Again had a rough day, and today he seemed better. Today he was calm, not restless at all, alert at times and recognized people. He is confused alot of the time, and short term memory is not there. I asked the doctor what we should expect, and again its not good. Told me that with any one of these seizures he may not come out of it. Or he could have a massive stroke and pass on. Can't tell me if it could be days, weeks or months. Still in hospital now 3 weeks. Say from here it could be the hospice inpatient unit for a couple of weeks. HOME???humm how do I go to work or anywhere? Who will stay with him and help him with a urnial or walk him to the bathroom and help him with his pants, help him to eat, cut up his food, put his shoes on him and continue to assist him like a small child? And then ask that person to watch for signs of a seizure and if he starts having a seizure roll him onto his left side, and call 911, then hold your breath and hope they get there before he chokes to death on the froath and foam in his mouth. And if that isn't enough, throw in that he could also have a massive stroke while I'm gone too, so good luck see ya when I get back....Humm who will stay with him while I work, go to the store, run to the bank, pharmacy or post office....NO ONE.
Just impossible to think about where we go from here. The drugs that were supposed to make him better, are now costing him his life. He is confused and unaware even though he was told, he quickly forgot, and maybe that is best. He wouldn't want to realize how he is today. My man, the love of my life slipping away everyday. So sad, I keep the faith and remain strong, but inside I am crumbling. I don't want him to go...

So Sad
Hello, How do I begin to answer your post. There just isn't the right words to comfort
you. All I can offer, is my love and prayers for you both. I wrote you awhile back, I lost my husband, my love, in May 2004. I still feel the loss. We had such a wonderful marriage and had so many wonderful years. We did everything together. All I have left is such wonderful memories. That keeps me going, It really does. I have a wonderful family and amazing friends.

I can only suggest my opinion. I can't imagine your husband being at home. Oh my, choking to death, how horrible. Is there a hospice hospital near you? Where do you live? I live in New York. We have quite a number of hospice's. Calvary Hospital is one.

May the angels watch over you both. God Bless Maggie

allmost60

liltazcat said:

few set backs
This virus is not good. They say it is JC virus which lies dormant in everyone since childhood. When the immune system becomes compromised the JC virus can become active and develop into a viral infection called PML.
He had a couple of better days, where he seemed to be improving. Then Thursday symptoms of a mini stroke (couldn't use right hand or leg) CT scan normal. Then on Friday the seizure came. It was a bad one, took them 45 min to get it stopped. He was then in critical shape throughout the remainder of the day. Saturday morning doing alright, but the nurses having trouble drawing labs, and flushing his IV site was painful. So the IV team felt he would benefit from a pic line. So they put the pic line in and right after he had another seizure. Again had a rough day, and today he seemed better. Today he was calm, not restless at all, alert at times and recognized people. He is confused alot of the time, and short term memory is not there. I asked the doctor what we should expect, and again its not good. Told me that with any one of these seizures he may not come out of it. Or he could have a massive stroke and pass on. Can't tell me if it could be days, weeks or months. Still in hospital now 3 weeks. Say from here it could be the hospice inpatient unit for a couple of weeks. HOME???humm how do I go to work or anywhere? Who will stay with him and help him with a urnial or walk him to the bathroom and help him with his pants, help him to eat, cut up his food, put his shoes on him and continue to assist him like a small child? And then ask that person to watch for signs of a seizure and if he starts having a seizure roll him onto his left side, and call 911, then hold your breath and hope they get there before he chokes to death on the froath and foam in his mouth. And if that isn't enough, throw in that he could also have a massive stroke while I'm gone too, so good luck see ya when I get back....Humm who will stay with him while I work, go to the store, run to the bank, pharmacy or post office....NO ONE.
Just impossible to think about where we go from here. The drugs that were supposed to make him better, are now costing him his life. He is confused and unaware even though he was told, he quickly forgot, and maybe that is best. He wouldn't want to realize how he is today. My man, the love of my life slipping away everyday. So sad, I keep the faith and remain strong, but inside I am crumbling. I don't want him to go...

So sorry!
My heart goes out to you and I will keep you in my prayers. There is no way you can do this all on your own, so please reach out and seek help. There has to be services at the hospital to guide you. Please try to take care of yourself during this hard time, and getting help will take some of the burden off of you. Much love...Sue (FNHL-2-3A-6/10)

liltazcat

allmost60 said:

So sorry!
My heart goes out to you and I will keep you in my prayers. There is no way you can do this all on your own, so please reach out and seek help. There has to be services at the hospital to guide you. Please try to take care of yourself during this hard time, and getting help will take some of the burden off of you. Much love...Sue (FNHL-2-3A-6/10)

thank you all for such kindness and help
The last two days have been okay, no set backs. He remains confused and thinks he is either at work or his childhood community. Doesn't know he's in the hospital. Wonders why I leave in the evening, and don't sleep with him. Fed himself today and used the spoon more easily. Walked a short distance with a walker and the physical therapy assistant. He tends to rub the edges of blankets and the pillow case alot, and rolls blankets up into a ball. Sometimes appears aged, and others very young. Getting clingy wanting me to lay down next to him, he holds both of my hands and looks for me if I leave the room. I so want him to keep his dignity.

I have spoke with the doctor about plans for care. Knowing how involved I have been in Frank's care and that I want to do the best for him. The doctor believes that at home with hospice would be best. I haven't ever known anyone who's had hospice, and don't know what to expect. I have researched it a little on line to see what is available in our rural Pennsylvania community. There is a hospice program through a community nursing program and I have the phone number to pass on to the social worker at the hospital. My heart aches everyday, and maybe the hospice program will benefit me as well. If anyone has ever used the hospice or has good information, please share.

forme

liltazcat said:

thank you all for such kindness and help
The last two days have been okay, no set backs. He remains confused and thinks he is either at work or his childhood community. Doesn't know he's in the hospital. Wonders why I leave in the evening, and don't sleep with him. Fed himself today and used the spoon more easily. Walked a short distance with a walker and the physical therapy assistant. He tends to rub the edges of blankets and the pillow case alot, and rolls blankets up into a ball. Sometimes appears aged, and others very young. Getting clingy wanting me to lay down next to him, he holds both of my hands and looks for me if I leave the room. I so want him to keep his dignity.

I have spoke with the doctor about plans for care. Knowing how involved I have been in Frank's care and that I want to do the best for him. The doctor believes that at home with hospice would be best. I haven't ever known anyone who's had hospice, and don't know what to expect. I have researched it a little on line to see what is available in our rural Pennsylvania community. There is a hospice program through a community nursing program and I have the phone number to pass on to the social worker at the hospital. My heart aches everyday, and maybe the hospice program will benefit me as well. If anyone has ever used the hospice or has good information, please share.

hospice
Hi,
I am so sorry to hear about your husband.

We have had two different times with hospice in the last two years. The first time was with my mom. She has since recovered and is no longer needing hospice.

The second and most recent was with my mother in law. We moved her across the country in Oct and she passed away in Jan of this year. We set up the hospice for the day she arrived in Calif. The hospice we used and loved is called VITAS. They are all over the country. Look them up online and give them a call. They were so helpful in so many ways. What ever we asked for, they were quick to help us get our needs met and my mother in laws needs met. My mother in law spent her final months with loving and respectful care by all the people from Vitas.

If you have any other questions, please ask and I will try to answer.
Lisha

Michele23

liltazcat said:

thank you all for such kindness and help
The last two days have been okay, no set backs. He remains confused and thinks he is either at work or his childhood community. Doesn't know he's in the hospital. Wonders why I leave in the evening, and don't sleep with him. Fed himself today and used the spoon more easily. Walked a short distance with a walker and the physical therapy assistant. He tends to rub the edges of blankets and the pillow case alot, and rolls blankets up into a ball. Sometimes appears aged, and others very young. Getting clingy wanting me to lay down next to him, he holds both of my hands and looks for me if I leave the room. I so want him to keep his dignity.

I have spoke with the doctor about plans for care. Knowing how involved I have been in Frank's care and that I want to do the best for him. The doctor believes that at home with hospice would be best. I haven't ever known anyone who's had hospice, and don't know what to expect. I have researched it a little on line to see what is available in our rural Pennsylvania community. There is a hospice program through a community nursing program and I have the phone number to pass on to the social worker at the hospital. My heart aches everyday, and maybe the hospice program will benefit me as well. If anyone has ever used the hospice or has good information, please share.

Pa/Hospice
Liltazcat,I also live in Pa.My brother-in law uncles many aunts all had hospice.They provided the most caring passionate nurses and care givers.I have already told my family that is who I'd want and to pass at home should the situation come into play.I always did feel its wise for family to know your wishes upfront.One by one we come into the world one by one we leave.God bless,Michele

liltazcat

yesyes2 said:

Diagnosis
I am so very sorry to hear of your husbands diagnosis. My thoughts and prayers are with you and your husband on your journey. Please come post whenever you wish as we will be here for you.

With my prayers and lovinf thoughts,
Leslie

My beloved has passed
Came home with hospice care. They were wonderful and caring people who did a great job. We got home on April 8, and he was able to walk with assistance and feed himself. Within two days, I had to feed him every meal, and hold the cup for him to sip from a straw. Got him into the car and took him for a ride on Thursday afternoon. He got so he couldn't walk anymore, and on Tuesday he stopped opening his mouth for food. Tuesday evening he suffered 3 seizures within an hour the first lasting 10 min, the second 12 mins and the third one 15 mins. The hospice nurse came after the first seizure, and by the third one was on the phone with 911 to get him to the hospital to get IV seizure medication. She said we need to get the seizures under control. So at the hospital they gave us the choice of taking him home or to the inpatient hospice to be sure the seizures were under control. We choice inpatient hospice, and thank god as at 3 am he had another seizure that lasted only two minutes. This one left him in a coma and he had no use of his arms or legs. He laid lifeless until Thursday evening when he passed to eternal life at 8:30 pm.
My beloved husband is now with god in a better place without pain or suffering. I wish I could have kept him longer, but knew he would not have wanted to suffer any longer.

To all of you, PLEASE get the drug information on any drugs your doctor wants you to take.
Take the time to read and understand the side effects. Is PML rare? Yes, but it does happen and there is no cure. My husband took these drugs reguardless of side effects and never got sick. People didn't realize he had cancer because he never looked or acted sick. I didn't treat him like he was sick and he didn't want others to treat him that way either. When people knew and aske him how he was doing his response was always "great".
So the rare side effect got him, and until it did he lived life to the fullest, and did the things he loved. His opinion was "Life is for the Living" and he felt if he weren't living he might as well be dead. Said to think, and deal with now, but those words gave
me comfort in my time of sorrow, and I think that I'll have them carved in his head stone.
And always remember Life is for the Living.

Thank you all for your thoughts and prayers. Frank will be sadly missed by myself and all his loving family and friends.

Laurie

allmost60

liltazcat said:

My beloved has passed
Came home with hospice care. They were wonderful and caring people who did a great job. We got home on April 8, and he was able to walk with assistance and feed himself. Within two days, I had to feed him every meal, and hold the cup for him to sip from a straw. Got him into the car and took him for a ride on Thursday afternoon. He got so he couldn't walk anymore, and on Tuesday he stopped opening his mouth for food. Tuesday evening he suffered 3 seizures within an hour the first lasting 10 min, the second 12 mins and the third one 15 mins. The hospice nurse came after the first seizure, and by the third one was on the phone with 911 to get him to the hospital to get IV seizure medication. She said we need to get the seizures under control. So at the hospital they gave us the choice of taking him home or to the inpatient hospice to be sure the seizures were under control. We choice inpatient hospice, and thank god as at 3 am he had another seizure that lasted only two minutes. This one left him in a coma and he had no use of his arms or legs. He laid lifeless until Thursday evening when he passed to eternal life at 8:30 pm.
My beloved husband is now with god in a better place without pain or suffering. I wish I could have kept him longer, but knew he would not have wanted to suffer any longer.

To all of you, PLEASE get the drug information on any drugs your doctor wants you to take.
Take the time to read and understand the side effects. Is PML rare? Yes, but it does happen and there is no cure. My husband took these drugs reguardless of side effects and never got sick. People didn't realize he had cancer because he never looked or acted sick. I didn't treat him like he was sick and he didn't want others to treat him that way either. When people knew and aske him how he was doing his response was always "great".
So the rare side effect got him, and until it did he lived life to the fullest, and did the things he loved. His opinion was "Life is for the Living" and he felt if he weren't living he might as well be dead. Said to think, and deal with now, but those words gave
me comfort in my time of sorrow, and I think that I'll have them carved in his head stone.
And always remember Life is for the Living.

Thank you all for your thoughts and prayers. Frank will be sadly missed by myself and all his loving family and friends.

Laurie

I am so sorry!
Dear Laurie,
I am so very sorry to hear this news. I have wondered how things were going with your dear husband. I talked to my Oncologist last week about the JC virus and he said it was very, very rare. I have copied and saved all of your posts concerning your husband and will keep them in my cancer notebook for future reference. Thank you for sharing all of the information and making us aware. My heart hurts for you and your family and I will keep all of you in my prayers. Please feel free to post if you need support and comfort. We will always be here for you. God bless you Laurie...Love, Sue

yesyes2

allmost60 said:

I am so sorry!
Dear Laurie,
I am so very sorry to hear this news. I have wondered how things were going with your dear husband. I talked to my Oncologist last week about the JC virus and he said it was very, very rare. I have copied and saved all of your posts concerning your husband and will keep them in my cancer notebook for future reference. Thank you for sharing all of the information and making us aware. My heart hurts for you and your family and I will keep all of you in my prayers. Please feel free to post if you need support and comfort. We will always be here for you. God bless you Laurie...Love, Sue

So Very Sorry
Dear Laurie,
I am so very saddened by your lose. I could tell from your posts how very deep your love is and I'm sure he knew this too. I am just so very sorry you, your husband and your entire family had to go through this experience. Cancer is a nasty beast and to lose someone from the medication meant to save them is heart wrenching.
May you and your family find peace and comfort in the coming days,
With much love, Leslie

truckingalong

liltazcat said:

My beloved has passed
Came home with hospice care. They were wonderful and caring people who did a great job. We got home on April 8, and he was able to walk with assistance and feed himself. Within two days, I had to feed him every meal, and hold the cup for him to sip from a straw. Got him into the car and took him for a ride on Thursday afternoon. He got so he couldn't walk anymore, and on Tuesday he stopped opening his mouth for food. Tuesday evening he suffered 3 seizures within an hour the first lasting 10 min, the second 12 mins and the third one 15 mins. The hospice nurse came after the first seizure, and by the third one was on the phone with 911 to get him to the hospital to get IV seizure medication. She said we need to get the seizures under control. So at the hospital they gave us the choice of taking him home or to the inpatient hospice to be sure the seizures were under control. We choice inpatient hospice, and thank god as at 3 am he had another seizure that lasted only two minutes. This one left him in a coma and he had no use of his arms or legs. He laid lifeless until Thursday evening when he passed to eternal life at 8:30 pm.
My beloved husband is now with god in a better place without pain or suffering. I wish I could have kept him longer, but knew he would not have wanted to suffer any longer.

To all of you, PLEASE get the drug information on any drugs your doctor wants you to take.
Take the time to read and understand the side effects. Is PML rare? Yes, but it does happen and there is no cure. My husband took these drugs reguardless of side effects and never got sick. People didn't realize he had cancer because he never looked or acted sick. I didn't treat him like he was sick and he didn't want others to treat him that way either. When people knew and aske him how he was doing his response was always "great".
So the rare side effect got him, and until it did he lived life to the fullest, and did the things he loved. His opinion was "Life is for the Living" and he felt if he weren't living he might as well be dead. Said to think, and deal with now, but those words gave
me comfort in my time of sorrow, and I think that I'll have them carved in his head stone.
And always remember Life is for the Living.

Thank you all for your thoughts and prayers. Frank will be sadly missed by myself and all his loving family and friends.

Laurie

Beautiful quote
Laurie,

My heart goes out to you for your loss. I relate to your grief because my mother passed away last month to ovarian cancer. It is best for them not to suffer - yes Life is for Living - a beautiful quote. Thanks for sharing.

Liz