my brother in law had a brain tumor and got enrolled in a clinical trial at Johns Hopkins and lived for 11 years, most of that he was working full time. He set a record and when he passed away, his neurosurgeon and oncologist were there.
He and my sister looked long & intensely but they sure got some results. Originally the Brits (he was British) had given him 18 months and did not schedule an MRI for 7 months later but he married my sister and got on her insurance (yes pre existing condition and all) and that was that.
I think they spent about $300 a year for his uncovered expenses. After he passed away, my then 47 y/o sister went back to school for nursing and now she takes care of patients with head injuries and tumors.
I do health care law. Gabbys suggestion about calling around makes sense. You can argue that you want supportive symptom reducing palliative care and if that HAPPENS to also prolong life, do it.
My dad's cancer caused his liver to block and his abdomen swelled. Lots of pressure and discomfort and some pain. They drained him and then wanted not to do it anymore b/c it prolongs life but I made the "but it's also palliative" argument and then they agreed.
But as it turned out, he only needed one more treatment b/c his death was pretty quick. (56 days from day of dx).
My point was that there are arguments you can make OR perhaps alternative companies you can switch to. There are usually a few hospice companies in each area, and there are those other in between entities.
The Aff Care Act will not help you much, so don't head in that direction. I'm not being political but just familiar enough (with the law) to know that others are NOT familiar with the law, and it'll delay everything to even refer to it.
Plus what it says, will not help you get an answer that you want, anytime soon.
But there are options, Good luck!
M: 57 H: 60 M: 35 yrs S30,D28,D19 H off to Alaska 2006 Recon 7/07- 8/08 *2016* X = "ALASKA 2.0" GROUND HOG DAY I File D 10/16 OW DIV 2/26/2018 X marries OW 5/2016
Like Rick's dad, my brother in law had a brain tumor but got enrolled in a clinical trial at Johns Hopkins. With their treatments, (mostly covered by insurance too) he lived for 11 years, & most of that he was working full time. He set a record for longevity, and when he passed away, his neurosurgeon and oncologist were there. He was British and in his country, they had given him 18 months, offered no surgery and did not schedule an MRI for 7 months later (after a 60 day delay for a CT scan which made the diagnosis). Instead of waiting to see if he survived for the MRI, he married my sister, they moved back to the USA, he got on her insurance (pre existing condition and all) and that was that.
I think they spent about $300 a year for his uncovered expenses. So the 18 months turned into over a decade. (After he passed away, my then 47 y/o sister went back to school for nursing and now she takes care of patients with head injuries and tumors.)
Gabbys suggestion about calling around makes sense. You can argue that you want supportive symptom reducing palliative care and if that HAPPENS to also prolong life, do it. As a health care lawyer, I rarely saw Hospice get too strident when the argument that the life prolonging treatment ALSO feels better, was used.
My dad's cancer caused his liver to block fluids, and his abdomen swelled. Lots of pressure and discomfort and pain. They drained his abdomen and then wanted not to do it anymore b/c it prolongs life, but I made the "but it's also comforting/palliative" argument and then they agreed.
But as it turned out, he only needed one more treatment b/c his death was pretty quick. (56 days from day of dx).
My point was that there are arguments you can make OR perhaps alternative companies you can switch to. There are usually a few hospice companies in each area, and there are those other in between entities.
The Aff Care Act will not help you much, so don't even head in that direction. I'm not being political, just familiar enough (with the law) to know that others are NOT familiar with the law, and it'll delay everything to even refer to it.
Plus what the new law actually says, will not help you get an answer that you want, anytime soon.
But there are options, Good luck!
M: 57 H: 60 M: 35 yrs S30,D28,D19 H off to Alaska 2006 Recon 7/07- 8/08 *2016* X = "ALASKA 2.0" GROUND HOG DAY I File D 10/16 OW DIV 2/26/2018 X marries OW 5/2016
M: 57 H: 60 M: 35 yrs S30,D28,D19 H off to Alaska 2006 Recon 7/07- 8/08 *2016* X = "ALASKA 2.0" GROUND HOG DAY I File D 10/16 OW DIV 2/26/2018 X marries OW 5/2016
Thank you all for the information and advice. My Dad's cancer has metastasized to his spine, bone marrow and they think also his brain (the presence in his brain has not yet been confirmed). His prognosis is about 6 months. The oncologist has said the Sutent drug could extend that time up to maybe a year. However I'm not convinced it would be a quality of life extension, but just a quantity of life extension.
Most of the family (including me) thinks the best option is to get him into hospice and make his final weeks/months as pleasant as possible. However he is the one who has the cancer and he is in a frame of mind right now of wanting to try anything and everything to extend his life. I can't blame him for that, I guess if I was the one who had limited time left I would want to try and get as much time as I could provided it was a quality time. However, his pain is getting increasingly more uncomfortable. They have now prescribed percocet and morphine for the pain. I want him to be comfortable, but my fear is he's just going to be in a heavily sedated state with no quality of life at all.
BA, I totally get that. My mom lived 3 months from the date of her diagnosis. She became increasingly more uncomfortable so we did our best to make sure she was comfortable. Like your Dad - she was grasping at straws to find a cure but there was nothing. We helped her with her decisions the best we could. In the end - we were grateful that we had enough time to prepare for the inevitable but not too much time for her to suffer.
I guess all I have to add is that you & your Mom could spend his final weeks desperately searching for the answer that is not there. Or you could spend it with him - reliving happy times, good memories with photos, videos etc.
Do what you have to do for your family right now. It is a really tough time & my heart goes out to you.
I guess all I have to add is that you & your Mom could spend his final weeks desperately searching for the answer that is not there. Or you could spend it with him - reliving happy times, good memories with photos, videos etc.
Do what you have to do for your family right now. It is a really tough time & my heart goes out to you.
Barb
Thanks Barb. I didn't mean to give the wrong impression - my Mom and I aren't desparately searching for an answer. Based on the diagnosis and prognosis that has been provided we would like to see him transition into a comfortable hospice environment. However he's not ready to do that and we're not pushing him too. It is his decision and he is currently still in the mode of grasping at any option that might give him more time. When he saw the Oncologist on Monday the option of Sutent was presented to him and he immediately wanted to see if he could get on it provided they could get some type of insurance or financial coverage. He is scared right now and I do get that.
Gineen - thanks for the perspective on the morphine situation. I do hope he can get relief from the pain and is comfortable. That to me is what is most important. There is no sense being in constant pain.
Hospice is a wonderful resource for the whole family. My mom was on hospice for quite a while. I got her on as soon as I could, not because I thought the end was coming in a few days or weeks but because it is such a resource. She wasn't on long enough to need recertification. Initial cert is for 6 months, I believe.
All the best to you BA, I'm coming up on the 4 yr anniversary of Mom's death in a couple of weeks.
Sending strength and courage your way.
Me 57/H 58 M36 S 2.5yrs R 12/13
Let me give up the need to know why things happen as they do. I will never know and constant wondering is constant suffering. Caroline Myss
I personally would honor what my dad wants. Of course, I think this goes part and parcel with letting go and allowing others to make decisions for themselves, even if I don't like or agree. After all, even doing the DB thing - all I asked of my family when I decided to wait it out was to love and support me and my decision. And they did it.
There are times when it's REEEALLLLY hard, and yours is one of them. But maybe you can set out to have him enjoy the time he has with you and let him fight his fight too?
Back when Dennis' cancer first metastasized to his esophagus, I was the nervous Nellie. My grandfather died a horrid death from esophageal cancer and I knew that it was a tough one. I worked to temper my anxiety, along with the 2 cops (one is also a nervous Nellie). The good thing is that there are so many more available options now. I'm not saying this to you or anyone in particular. Just that my perception was based on something that was true in the past. He chose the radiation option. Cop #1 and I were still unsure - he was in a lot of pain and visibly suffering, as well as it changed his voice forever. Anyway, I guess I tempered my anxiety a whole lot better than Cop #1 (he's such a good guy, and I want you to know this).
One afternoon, Cop #1 called me at work. He told me that he had gone to dinner with Dennis and that HE got a talk. Dennis told him that he was so appreciative that he was and is his good friend. But he asked for one gift, and one gift only (other than his time and friendship). He said, "What I want from you and everyone else is the gift of hope. I have it, and in order for me to do this, I need YOU to have it too." Cop #1 reframed and told me and from that point forward, it has been our mantra. We share our anxiety with each other, but we are certainly hopeful and respectful with his wishes.
And honestly, why does it take for someone to tell us they need hope? Why don't we offer it anyway? I can say fear was our reason. Plus we both believe this world is a better place with him in it. We're all kinda selfish that way. The love sort of selfish.
But you know what? At that time, the docs had suggested he take Nexavar - that it would work optimally under his circumstances. Dennis had done enough research on it to say no. That he wasn't in the business of prolonging a life without quality. We didn't agree with that decision and just put stuff out there for him to consider. He chose his path with our blessing. And sadly, last week, he told the oncologist he was willing to go that route. Only now it truly *would* be prolonging the inevitable. They told him that he would basically be housebound and have no energy. He decided he'd rather manage the pain and go to dinner and the movies with us.
Hmmm. I think I might arrange a Valentine's Day dinner at my house now. Complete with china and crystal.
Anyway, I applaud you for walking that thin line of wanting something but letting go of your wants because this is your dad's choice. BA, you're a good egg.
The sun is finally out and the snow has stopped. But it's -10 and D16 is home sick. Not a good time for that, but Mr. Wonderful is in LA for work until later tonight. Oh well. I might go out and shovel a bit to get my muscles moving.
Hugs to all-
Betsey
"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
