Wellness

[twocent]

On 5/22/2014 lolakimono said:

Twocent-

That's terrible news. 8-12 months is the "norm" for Stage IV, but my father went faster than that. His was in the place that connects the stomach to the esophagus, so it was also inoperable. He did both chemo and radiation, in the later stages.

He might consider a Vitamix, if he doesn't have one already, to make sure that he can get nutrients in liquid form as it becomes more difficult to swallow.

Also, if you have a family member with a compatible blood type, you might consider donating blood in his name in case he needs transfusions from the tumor bleeding.

That is a wonderful idea. Thank you.

I thought the four years was stretching it quite a bit, but you try to look at the glass "half- full." These truths are hard to face.

I am so sorry about your Father, and the pain that you and the family endured.

Blessings to you.

[NYwoman]

I have been having difficulty, at times, swallowing but am finding it hard to see a doctor to the ACA. I have Medicare (Advantage program) and so many doctors have gotten reduced payments for services, we have to fight to see an MD and not an RN!!!!

I worked in a high stress, short break time, job and had to force food down quickly. And, I cannot afford a mattress and sleep on boards and blankets. Both have effected my swallowing. I am fighting now to see an MD to get a referral and diagnostic idea to see a gastroenterologist. It is difficult because, where I live, I must "apply" for a doctor and may have to go to one "out of network" just to see an MD.

I hate the ACA and the way seniors are treated.

[mistriTsquirrel]

On 4/1/2014 mistriTsquirrel said:

On 3/31/2014 lolakimono said:

Mistri,

In your father's case, it could be that it's not cancer in his brain, but rather the "brain fog" that one experiences during treatment.

Did you check into hospice?

I don't think it's brain fog, lola. His chemo ended almost a month ago, and he just started this steep slide a few days ago. His cough is also much, much worse...and gets worse when he eats...and he's started having pain in his femur. He can't walk from the couch to the kitchen without being out of breath. His balance has now become so bad that he can no longer safely walk without help. His signature looks like the squiggly lines that a polygraph machine produces...there are no recognizable letters anymore. Today he was not able to feed himself; my mom fed him like you would feed an infant baby food. When I went to hug him goodnight (we were both standing), he didn't extend his arms. I put my arms around him and he began to fall into me. His speech is slurred at times. He couldn't hold the phone up to his ear long enough to listen to my brother when my brother called, but when he dropped the receiver, he didn't even realize he'd done so...he just kept holding his clenched hand up next to his ear, like nothing had happened.

I asked him today what he wanted to do when my mom and I need more help caring for him...I asked him if he wanted a nurse to come to the house or if he wanted to go to a place to stay and get care. He said, "I don't know." It was very clear that he didn't want to talk about it, and he looked upset. I told him I just wanted to know what he wanted, so that we could make decisions based on what he wants, and I hugged him. I think it hurt him when I asked that, but I'm afraid of waiting and having us make decisions blindly without being sure of what he would want. I think it would be easier on him to stay in his home. As his brain becomes more and more affected, I can only imagine that changing his environment will be extremely stressful for him and cause him fear. I'm unsure as to whether or not my mom can handle the stress of this situation, and having him at home with her while he is so ill...but the man has a right to die in his home if he wants to. I told her I will move in with them for awhile and we will take care of him, along with a nurse from hospice. It looks like I'm going to have to finish out the work week this week, but I'll just have to go over there when I'm not working and let her sleep, shower, go out, or whatever she needs/wants to do. Ideally, I'd like to work weekend nights and continue to bring in some income, but we'll see what happens.

My parents have an appointment Wednesday with my dad's chemo oncologist. I asked my mom to call and leave a message for the oncologist ahead of time, so that he would know to bring up the topic of in-home care with my dad...so that none of us would be "the bad guy." She didn't do it. I may have to call and leave a message there myself. I also plan on making some phone calls to find out where we can rent a wheelchair and things like that, and how much of the cost Medicare covers.

Just an update, for anyone reading this thread...

My dad did not have metastasis to his brain...he had 20 or so areas of his brain that were damaged by multiple strokes.

He was admitted to the hospital--for his first stay in April--on that Wednesday. While he was in the hospital, clots were found in his carotid arteries, and he was put on a blood thinner. Thankfully, the thinner he was on initially was able to be stopped when he was found to have fluid in the pleural sacks (around his lungs). About a quart of fluid was taken from each side.

He wasn't home for too long before we had to take him back to the hospital. During his second stay, we found out that the pleural fluid removed during his previous stay was malignant. He was sent home on oxygen and with breathing treatments, but it wasn't long before he couldn't breathe again.

On Easter Sunday, we took him to the ER because he couldn't breathe. The next day, one of his doctors and his chemo oncologist's nurse practitioner came to the hospital to tell him that hospice was his best option. Neither party bothered to call my mother or I before they dropped this bombshell on a man who was still in denial (so that one of us could be there with him). He called my mother crying.

My father felt betrayed by his doctors, but he submitted to hospice...and to a "Do Not Resuscitate" directive. I don't think he wanted to, but he felt he had no choice. He didn't believe he was sick enough to be beyond hope.

While in the hospital, he had pleural drains put in so that the fluid could be drained into a container as needed and there would be no further need for surgical draining of the fluid.

On the 25th of April, he was transferred to a hospice facility. He was supposed to stay there for 1-3 days and then come home. When hospice nurses attempted to drain his pleural sacks via pleurex drain, the fluid was very red; it was clear that it was mostly blood. He never made it home. He was 67. (He lived for only 8 months following his initial diagnosis.)

Watching my father die was one of the worst things I've ever experienced...and it didn't have to happen this way.

Please don't let this happen to you or to the ones you love.

--mistriTsquirrel

[hckynut]

On 5/25/2014 mistriTsquirrel said:

Just an update, for anyone reading this thread...

My dad did not have metastasis to his brain...he had 20 or so areas of his brain that were damaged by multiple strokes.

He was admitted to the hospital--for his first stay in April--on that Wednesday. While he was in the hospital, clots were found in his carotid arteries, and he was put on a blood thinner. Thankfully, the thinner he was on initially was able to be stopped when he was found to have fluid in the pleural sacks (around his lungs). About a quart of fluid was taken from each side.

He wasn't home for too long before we had to take him back to the hospital. During his second stay, we found out that the pleural fluid removed during his previous stay was malignant. He was sent home on oxygen and with breathing treatments, but it wasn't long before he couldn't breathe again.

On Easter Sunday, we took him to the ER because he couldn't breathe. The next day, one of his doctors and his chemo oncologist's nurse practitioner came to the hospital to tell him that hospice was his best option. Neither party bothered to call my mother or I before they dropped this bombshell on a man who was still in denial (so that one of us could be there with him). He called my mother crying.

My father felt betrayed by his doctors, but he submitted to hospice...and to a "Do Not Resuscitate" directive. I don't think he wanted to, but he felt he had no choice. He didn't believe he was sick enough to be beyond hope.

While in the hospital, he had pleural drains put in so that the fluid could be drained into a container as needed and there would be no further need for surgical draining of the fluid.

On the 25th of April, he was transferred to a hospice facility. He was supposed to stay there for 1-3 days and then come home. When hospice nurses attempted to drain his pleural sacks via pleurex drain, the fluid was very red; it was clear that it was mostly blood. He never made it home. He was 67. (He lived for only 8 months following his initial diagnosis.)

Watching my father die was one of the worst things I've ever experienced...and it didn't have to happen this way.

Please don't let this happen to you or to the ones you love.

--mistriTsquirrel

Reading your update really has made me sad and I feel so sorry for you and your mother and your whole family for what you have had to endure. Some of the above really to me sounds like unnecessary confusion put on you/your father and your mother. I would say I can't imagine that one of his doctors and a chemo oncologist and an NP would come in and tell you father something of that magnitude without one or both of you there with him at the time. The right thing would have been for them to talk with you and your mother to see what would be the best way to tell your father their intentions.

Said "I would say I can't imagine" but I had my own experience with a dietician with my 2nd heart attack. This in no way compares to what they did to your father, but it sure opened my eyes to some in the medical field that seem to be brain dead when they talk with some patients.

In my case this person came in and started telling my all about reducing salt and other things that I already was doing with my fluid and food intake. She them said "and you can only drink 64oz of fluid per day" and that is when I said "what the heck are you talking about"? She then proceeded to tell my I had Congestive Heart Failure. Now this is a Dietician and hardly the person I want coming into my room saying I am suffering from CHF. I asked her "and who told you that"? She replied I read your record. I pretty much told her to get the "h" out of my room and I would wait to talk with my Cardiologist about this before wasting any of my time, which was only hours after my heart attack and I was still quite weak and tired.

I had never seen what you typed above about your father and his passing. I am so very sorry that you and your family had to endure such an event as this and over such long period of time.

My thoughts are with you and your mother and everyone else who loved your father.

[mistriTsquirrel]

On 5/25/2014 hckynut said:

On 5/25/2014 mistriTsquirrel said:

Just an update, for anyone reading this thread...

My dad did not have metastasis to his brain...he had 20 or so areas of his brain that were damaged by multiple strokes.

He was admitted to the hospital--for his first stay in April--on that Wednesday. While he was in the hospital, clots were found in his carotid arteries, and he was put on a blood thinner. Thankfully, the thinner he was on initially was able to be stopped when he was found to have fluid in the pleural sacks (around his lungs). About a quart of fluid was taken from each side.

He wasn't home for too long before we had to take him back to the hospital. During his second stay, we found out that the pleural fluid removed during his previous stay was malignant. He was sent home on oxygen and with breathing treatments, but it wasn't long before he couldn't breathe again.

On Easter Sunday, we took him to the ER because he couldn't breathe. The next day, one of his doctors and his chemo oncologist's nurse practitioner came to the hospital to tell him that hospice was his best option. Neither party bothered to call my mother or I before they dropped this bombshell on a man who was still in denial (so that one of us could be there with him). He called my mother crying.

My father felt betrayed by his doctors, but he submitted to hospice...and to a "Do Not Resuscitate" directive. I don't think he wanted to, but he felt he had no choice. He didn't believe he was sick enough to be beyond hope.

While in the hospital, he had pleural drains put in so that the fluid could be drained into a container as needed and there would be no further need for surgical draining of the fluid.

On the 25th of April, he was transferred to a hospice facility. He was supposed to stay there for 1-3 days and then come home. When hospice nurses attempted to drain his pleural sacks via pleurex drain, the fluid was very red; it was clear that it was mostly blood. He never made it home. He was 67. (He lived for only 8 months following his initial diagnosis.)

Watching my father die was one of the worst things I've ever experienced...and it didn't have to happen this way.

Please don't let this happen to you or to the ones you love.

--mistriTsquirrel

Reading your update really has made me sad and I feel so sorry for you and your mother and your whole family for what you have had to endure. Some of the above really to me sounds like unnecessary confusion put on you/your father and your mother. I would say I can't imagine that one of his doctors and a chemo oncologist and an NP would come in and tell you father something of that magnitude without one or both of you there with him at the time. The right thing would have been for them to talk with you and your mother to see what would be the best way to tell your father their intentions.

Said "I would say I can't imagine" but I had my own experience with a dietician with my 2nd heart attack. This in no way compares to what they did to your father, but it sure opened my eyes to some in the medical field that seem to be brain dead when they talk with some patients.

In my case this person came in and started telling my all about reducing salt and other things that I already was doing with my fluid and food intake. She them said "and you can only drink 64oz of fluid per day" and that is when I said "what the heck are you talking about"? She then proceeded to tell my I had Congestive Heart Failure. Now this is a Dietician and hardly the person I want coming into my room saying I am suffering from CHF. I asked her "and who told you that"? She replied I read your record. I pretty much told her to get the "h" out of my room and I would wait to talk with my Cardiologist about this before wasting any of my time, which was only hours after my heart attack and I was still quite weak and tired.

I had never seen what you typed above about your father and his passing. I am so very sorry that you and your family had to endure such an event as this and over such long period of time.

My thoughts are with you and your mother and everyone else who loved your father.

Thanks, John.

My father's chemo oncologist is kind of an a-hole, and always seemed that way, right from the start. He didn't have any answers for why my dad's cancer wasn't responding to chemo (at all), and he sent us back up to U of M (where we'd previously been for a second opinion). Then he didn't get my dad's PET, CT and MRI images sent up there in a timely manner, so the doctor up there didn't present his case to the tumor board as soon as it could have been presented. In fact, I'm not sure it ever got presented, because we never got the call we were promised from the oncologist there that his case had been discussed. He'd had these strokes anyway, so it didn't matter by the time all was said and done, but it still left us with the sense that nobody really cared. It was just another day at work for them.

Initially, I pushed for my parents to go to other places, but my dad just didn't want to. He thought he was getting adequate care from his oncologists. I'm not sure anyone else could've given him a better outcome, but I'm left with doubts because of the small amount of consideration that was given to his case.

I'm sure you know better than most people that you really have to be your own advocate. I don't think my dad wanted to think that way...he just wanted to believe everything would be okay somehow. No one ever taught him how to face things head-on when he was growing up...and he didn't seek out much help with it as an adult, so he wound up a grown man with a limited ability to deal with things. I can't say I'm that much better off than he was; I can really understand where he was coming from, truly. Sometimes the anxiety of doing the "head-on" work is so high that one winds up avoiding it. I understand that; I think that's one of the reasons I've felt so much sorrow for him...all he wanted was to spend his retirement hanging out on the couch with the dog, and going for the occasional trip to see the grand kids. He worked his whole life and got less than 2 months of retirement time in before he was diagnosed with cancer. I think he felt cheated. In a way, I think he thought things "couldn't" turn out the way they did, you know? He believed that until about a week before his death. I knew things would turn out that way, but I felt helpless to do anything about it; his denial was keeping him going...so how could I rightly try to interfere with it? All I could do was hold his hand and cry with him, and tell him how sorry I was that things had turned out this way.

Towards the end, he could only speak a single garbled word at a time. I asked him if he believed that Jesus Christ is his savior, and he said a barely intelligible "yes." I told him the Bible says that if you call upon the name of the Lord, ask for salvation and accept it, and then you will be saved. I told him I would say a prayer for him, and he could say it also, in his head. I said the prayer, asking for his salvation, and then I said, "amen." He then said a garbled, "amen." I believe that is the last thing he ever said. Shortly before he passed, I asked him to come back and visit me in my dreams if he could. I dream about him, but he hasn't "come to me" in my dreams. I'm not holding my breath. All I can do is hope that he was comforted by the prayer...that it brought him some sort of peace. I wish I could feel at peace in some way, but I do not have much in the way of faith; I can only try to move forward in the best way I know how.

I hope that when the time comes for me to fight cancer--as most people in my family eventually do--I will wage an honorable battle, and do so with as much grace as possible. My dad did his best, and I was impressed by his calm and assured demeanor through all of his tests and treatments (regardless of its source). He never complained about being ill; he said he felt fortunate to be able to receive decent care...that not everyone has the means to. He was pleased to see me finally get a real PPO insurance plan this year; that was one of his wishes.

When he was lying in the bed and could no longer speak, I promised him I would be okay...so I guess I have to try and be okay, right?

[spud188]

I really am so sorry,one long tough road.

[dooBdoo]

I wanted to bring this thread forward for those discussing heartburn and GERD.

Cyber hugs to mistri, and lolakimono, and all who have experience with this.

[Lyn08]

One of my cousins has Stage 4 cancer of the esophagus. He was diagnosed almost 2 1/2 years ago. His doctors told him his cancer is inoperable. When he was first diagnosed, he was told he would live no more than 2 months without chemo and no more than one year with chemo, but he's still here.

He has been on chemo since he was first diagnosed. The chemo has eliminated any lesions in his lungs, and the tumor had reduced in size until his last scan. Because the tumor has grown, he will be put on a new chemo once very three weeks (for about 5 hours). He will also need to take two pills twice a day, and the pills are not covered by his insurance (it will cost him about $480/month for this prescription). His oncologist is trying to get him some assistance with the cost of the pills.

He starts the new chemo next Monday. He's tolerated chemo in the past, but there are more potential side effects with the new chemo. He feels good otherwise, but he can't eat a lot, and has lost quite a bit of weight. He said he doesn't have any problem swallowing. He is a very positive person, and maybe that helps him. Of course, I worry about him a lot.