# Brief vent, I'm so scared.



## pidge70

My baby brother is in the hospital in AZ. So far away from me. He has been in there 4 days and still knows nothing. One of the many things wrong with him is that a baseball sized growth was found on his liver. A biopsy has been performed (Sunday) but, the results aren't back. Apparently he has been told it is possibly cancer. There are only 2 types of liver cancer, both fatal. I'm just freaking out.


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## moto164

I'm sorry to hear that Pidge, I'll be sending positive thoughts his way.


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## pidge70

Thank you moto.
_Posted via Mobile Device_


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## pidge70

Thank you coffee. Was your dad able to get a partial liver transplant?
_Posted via Mobile Device_


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## Ikaika

Pidge, so sorry to hear. I will be honest with you this does not sound good from you preliminary description. I am also assuming that they found these growths as part of some other exploratory condition that they were treating? If so, I hope there is an outside chance that this is a rare instance of when it is not part of a malignancy. 

In the meantime, I hope you have time to secure a flight out to see him soon. 

Sending Healing Aloha

Malama pono


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## pidge70

drerio-

He went in with abdominal pain. He also already had an untreated hernia. 

This is what they found:

1. Blood clot in his stomach....treating with blood thinners
2. Marble sized growth on one of his kidneys.
3. Torn muscle in his stomach. 
4. Baseball sized growth on his liver.

He also said something about his lymph nodes but, I couldn't really understand him. This is my half brother and his paternal grandfather died of cancer in his lymph nodes. 

My brother is "special". Not fully mentally retarded but, slow. He also has anger issues. Never seen a psych to be diagnosed but, he cannot interact with other people well. I'm worried that a lot of medical jargon is being used and he is not understanding it. Apparently his bloodwork is good. Wouldn't he have an elevated white blood cell count? 

As for getting there, I don't know where I would be able to afford to fly there and back. Plus, a hotel. I don't know, depending on what the news is, I will find a way.


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## pidge70

coffee4me said:


> No but not because of anything liver related he fell and injured his spinal cord, he passed away 2 months after that.


I'm so sorry.


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## Ikaika

pidge70 said:


> drerio-
> 
> He went in with abdominal pain. He also already had an untreated hernia.
> 
> This is what they found:
> 
> 1. Blood clot in his stomach....treating with blood thinners
> 2. Marble sized growth on one of his kidneys.
> 3. Torn muscle in his stomach.
> 4. Baseball sized growth on his liver.
> 
> He also said something about his lymph nodes but, I couldn't really understand him. This is my half brother and his paternal grandfather died of cancer in his lymph nodes.
> 
> My brother is "special". Not fully mentally retarded but, slow. He also has anger issues. Never seen a psych to be diagnosed but, he cannot interact with other people well. I'm worried that a lot of medical jargon is being used and he is not understanding it. Apparently his bloodwork is good. Wouldn't he have an elevated white blood cell count?
> 
> As for getting there, I don't know where I would be able to afford to fly there and back. Plus, a hotel. I don't know, depending on what the news is, I will find a way.


I am only going on what you are telling me, but it sounds to me like they did an endoscopy initially and likely followed up with an ultrasound. Very likely at that point they may have noticed something unusual and followed up with an MRI to get a more exact point of reference. It would be standard to biopsy all the growths along with lymph nodes associated with the abdominal drainage. 

Cancer metastasizes primarily via the lymphatic system. And they want to compare any unusual cells between all the areas to gain a perspective on what they are dealing with and at what stage they are looking at if it turns out to be malignant. 

Again, so sorry to hear. And, I completely understand people like your brother (I know he is half, but he sound like a real brother to me). As you know, you are describing my son almost to the "t" and I have a real heart for these special individuals.


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## CharlieParker

Thinking of you, all of you. Send positive vibes. 

Does he have peeps nearby? 

((( HUGS )))


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## pidge70

CharlieParker said:


> Thinking of you, all of you. Send positive vibes.
> 
> Does he have peeps nearby?
> 
> ((( HUGS )))


He only has his gf there. He is 1500 miles away from us....
_Posted via Mobile Device_


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## pidge70

Thank you for the hugs Charlie.
_Posted via Mobile Device_


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## pidge70

drerio-

Yes, he is a real brother to me. We grew up together. When he was born, the umbilical cord was wrapped around his neck. He was blue. I've always wondered if he might have some slight brain damage due to that. He hates just about everybody. He punches himself when he gets super mad. He says he does that so he won't hurt anyone.
_Posted via Mobile Device_


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## Homemaker_Numero_Uno

Your brother sounds like an okay guy!!! 
And it sounds as though he's in good hands.
Why not call the airlines to find out about discounts and also the hospital as they usually keep a list of discount places for families to stay. Heck, when my boyfriend had a brain hemorrhage and I stayed over at the hospital I just slept in the ICU waiting room which is what a lot of families do to save money. It's not ideal, but it's cheap and you can spend more time with your brother that way, if you do go out there. 
Arm yourself with info, and can he have a laptop brought into the hospital so you can Skype with him? Seeing him while talking to him may help both of you feel better about the distance between you (geographically.) And you may also get a chance to talk to his caregivers if you have questions. For that, you can go through the legal department at the hospital, or he can give his permission.
Major hugs to you.


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## heartsbeating

I'm really sorry Pidge and thinking of you.

I hope you can find a way to get to see him.


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## pidge70

Homemaker_Numero_Uno said:


> Your brother sounds like an okay guy!!!
> And it sounds as though he's in good hands.
> Why not call the airlines to find out about discounts and also the hospital as they usually keep a list of discount places for families to stay. Heck, when my boyfriend had a brain hemorrhage and I stayed over at the hospital I just slept in the ICU waiting room which is what a lot of families do to save money. It's not ideal, but it's cheap and you can spend more time with your brother that way, if you do go out there.
> Arm yourself with info, and can he have a laptop brought into the hospital so you can Skype with him? Seeing him while talking to him may help both of you feel better about the distance between you (geographically.) And you may also get a chance to talk to his caregivers if you have questions. For that, you can go through the legal department at the hospital, or he can give his permission.
> Major hugs to you.



Thank you HNU.


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## pidge70

heartsbeating said:


> I'm really sorry Pidge and thinking of you.
> 
> I hope you can find a way to get to see him.


Thank you hearts.


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## pidge70

It is now 6:40pm AZ time. He still hasn't been told anything. I'm seriously getting p!ssed. How long does it take?


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## LanieB

I'm so sorry, Pidge. I hope the doctors will know something soon.


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## pidge70

Thank you Lanie. I hope so too.


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## pidge70

Still no answers. They won't even fix his hernia until after the biopsy results. He is on Percocet and a Morphine drip for pain. The more scared I am getting, the more p!ssed off I am getting.


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## Jellybeans

Sending big hugs your way and well wishes, Pidge.

Is someone there with him?


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## pidge70

Jellybeans said:


> Sending big hugs your way and well wishes, Pidge.
> 
> Is someone there with him?


Thanks JB. Yes, his gf is there. I seriously cannot stand that girl. No one in the family likes her.


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## WorkingOnMe

Stay strong Pidge.


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## ScarletBegonias

BIG HUGS,Pidge!! I'm so sorry this is happening Seems like it never ends,doesn't it?

It's really ridiculous they don't have any answers at this point.Your poor brother is probably so looped on morphine that he can't demand answers from them so they're just moving at a glacial pace bc they can.


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## ILoveSparkles

pidge70 said:


> Still no answers. They won't even fix his hernia until after the biopsy results. He is on Percocet and a Morphine drip for pain. The more scared I am getting, the more p!ssed off I am getting.



Thinking of you!!

They may not want to fix his hernia now in case they decide he needs surgery for the growths....that way he only needs to go through one surgery instead of two.

If he is "special" as you say, and has potentially serious medical problems, is there a way for someone to become his power-of-attorney if needed? (Preferably not the girlfriend).


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## Ikaika

Who currently has medical power of attorney privileges if such is required? It maybe you want find out and stay in communication with that person.


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## Anonymous07

pidge70 said:


> Still no answers. They won't even fix his hernia until after the biopsy results. He is on Percocet and a Morphine drip for pain. The more scared I am getting, the more p!ssed off I am getting.


Sorry to hear about this Pidge. I know waiting is horrible. Hang in there. 

Hope you hear something soon.


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## joe kidd

I told her if he indeed has cancer go and get him and bring him to our house. I can put a couple grand on a CC so she can have her brother home.


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## Ikaika

joe kidd said:


> I told her if he indeed has cancer go and get him and bring him to our house. I can put a couple grand on a CC so she can have her brother home.



That is an awesome idea. Oh and by the way, you can setup up a donation account through PayPal. If you need help, let me know, I can spare some money. 

If you do this be sure to work with the hospital legal department to get pidge as his medical power of attorney. I found out a lot of these things through the experience years ago with my sister. The medical staff will in good faith share all the medical info with her and direct family members.


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## pidge70

drerio said:


> Who currently has medical power of attorney privileges if such is required? It maybe you want find out and stay in communication with that person.


I'm sure he doesn't have anyone chosen. Not something he would think of.


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## pidge70

joe kidd said:


> I told her if he indeed has cancer go and get him and bring him to our house. I can put a couple grand on a CC so she can have her brother home.


He has cancer. They are checking to see if it is in the lymph nodes or started out in his liver. I don't know. His gf isn't very freaking bright. I wish I could talk to the doctor.


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## joe kidd

pidge70 said:


> He has cancer. They are checking to see if it is in the lymph nodes or started out in his liver. I don't know. His gf isn't very freaking bright. I wish I could talk to the doctor.


Sorry. I have a 5pm job and then I will be home. As I have told you, you are the only one in your family that has any brains. 
The evidence is that you were smart enough to pick me. I'm an effing catch woman!


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## Ikaika

pidge70 said:


> He has cancer. They are checking to see if it is in the lymph nodes or started out in his liver. I don't know. His gf isn't very freaking bright. I wish I could talk to the doctor.



This where you want find out or advocate for him... To do as such requires legal documentation due to HIPAA rules.


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## pidge70

I called the hospital and talked to his case manager. She is getting a social worker lined up to talk to him so I can get permission to discuss his case. Now I just have to wait for them to call me back.

I tried talking to him the other day about bringing him back here. He started getting mad at me. I cannot let him freaking die out there. He needs to be home. I told him it was my job as his big sister to take care of him.


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## Ikaika

pidge70 said:


> I called the hospital and talked to his case manager. She is getting a social worker lined up to talk to him so I can get permission to discuss his case. Now I just have to wait for them to call me back.
> 
> I tried talking to him the other day about bringing him back here. He started getting mad at me. I cannot let him freaking die out there. He needs to be home. I told him it was my job as his big sister to take care of him.



This sounds like you are taking the right steps. If at any point they recommend hospice, you need to show him how great it will be for you (focus on you not him) to have him around. Of course, if they do recommend hospice, call them before he arrives to discuss how to setup his palliative care at home. I've done this for four relative now and it is very important that you talk with them sooner than later. If you want any other explanations about medical stuff that seems ambiguous but don't feel like sharing on a public forum feel free to send me a PM. 

Malama pono


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## pidge70

I've talked to a cancer treatment center here. The lady that takes care of new patients was really nice. She gave me some numbers to call to get him Medicare/Medicaid and to get the ball rolling for him to receive SSI. I wish I could convince him that he needs to be here.

I also just found out the other day that my dad (stepdad) was admitted to a hospital in Illinois with COPD. The fun just never ends here.


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## Ikaika

pidge70 said:


> I've talked to a cancer treatment center here. The lady that takes care of new patients was really nice. She gave me some numbers to call to get him Medicare/Medicaid and to get the ball rolling for him to receive SSI. I wish I could convince him that he needs to be here.
> 
> I also just found out the other day that my dad (stepdad) was admitted to a hospital in Illinois with COPD. The fun just never ends here.


I feel for you, I have been there with my Sister, Mom and Dad all at the same time. Let's just say it is something I don't wish for anyone. I know you can do it, but more importantly you have my deepest Aloha for you and your family. 

Malama pono

Here is a Hawaiian Healing nose flute. Take the time to breath, close your eyes and listen. 

Hawaiian Nose Flute with Kahu Alalani Hill - YouTube


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## tom67

So sorry
All you can do is offer I guess or can you apply to be a legal guardian?
Just throwing it out there.


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## Ikaika

Pidge, when you get the approval to receive medical updates about your bother, ask if he has ascites (swollen abdomen due to fluid build up in peritoneal cavity). This condition is common in patients with liver problems. The reason I suggest this, is because the extra abdominal pressure will make breathing much more labored. If you combine this with morphine, which slows breathing down, it could present some life threatening complications. Ask if they are taking precautions (like a trach-ventilator if necessary). They understand this, but just good to show you are a knowledgeable advocate. Nothing drastic till they have a complete profile of his diagnosis.


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## pidge70

Just talked to the social worker. She said the pathology wasn't back yet. All it said in the notes on his file was that the tumor looked "suspicious". Dafuq? She left a note in his file for the doctor to call me. I'm sure that will happen.....not.

Talked to my brother again. I was getting irate with him. I asked him what he wanted to do if he does have cancer. I told him I would go get him and bring him home. He said he had to talk to his gf first. Seriously? I then had to call our mother and tell her how her son was p!ssing me off....lol She seems to think me and our youngest brother need to go, that he can convince him to come back. I told her I had no idea how to pull off that expense. My parents are under the illusion that Joe and I are rich. Compared to them I suppose we would seem so. 

Anyway, I am getting super frustrated with this whole mess. The social worker said that if my brother is indeed "special", I could have him declared incompetent of making his own decisions. That would go over really well.


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## moto164

Sorry to hear the bad news.


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## CharlieParker

drerio said:


> That is an awesome idea. Oh and by the way, you can setup up a donation account through PayPal. If you need help, let me know, I can spare some money.


Do take d up on that, please.


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## pidge70

You guys are too sweet to offer. I wouldn't even know how to set something like that up.

If he doesn't want to come home, I'm not sure I'd even go. Then again, if I didn't and he died....I would hate myself.
_Posted via Mobile Device_


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## Ikaika

pidge70 said:


> You guys are too sweet to offer. I wouldn't even know how to set something like that up.
> 
> If he doesn't want to come home, I'm not sure I'd even go. Then again, if I didn't and he died....I would hate myself.
> _Posted via Mobile Device_


https://www.paypal.com/webapps/mpp/fundraising


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## Uptown

Pidge, I'm so sorry to learn today about your brother's battle with cancer -- or what appears to be cancer. You both are in my prayers. As you likely know, the prognosis is better if the cancer is determined to be localized and thus can be cut out (or perhaps replaced with a liver transplant). The American Cancer Society states:
In general, survival rates are higher for people who can have surgery to remove their cancer, regardless of the stage. For example, studies have shown that patients with small, resectable tumors who do not have cirrhosis or other serious health problems are likely to do well if their cancers are removed. Their overall 5-year survival is over 50%. For people with early-stage liver cancers who are able to have a liver transplant, the 5-year survival rate is in the range of 60% to 70%. See Survival rates for liver cancer​


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## larry.gray

pidge70 said:


> He has cancer. They are checking to see if it is in the lymph nodes or started out in his liver. I don't know. His gf isn't very freaking bright.


Oh Pidge, I'm so sorry. Prayers coming your way.



pidge70 said:


> I wish I could talk to the doctor.


Have you tried? If the doc has caught on both are a bit slow, he may welcome a close family member who will help out. 

On edit - glad you're hooking up with the hospital social worker.


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## larry.gray

pidge70 said:


> Anyway, I am getting super frustrated with this whole mess. The social worker said that if my brother is indeed "special", I could have him declared incompetent of making his own decisions. That would go over really well.


I sure wouldn't go there! 

What you should do though is get a couple of things set up: 
- You should be cleared to talk to all of the medical people. Not that you're making decisions for him, but should be able to hear all of the information direct.

- Try to get a power of attorney if he's incapacitated. I would think you should be able to explain this to your brother.


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## pidge70

His gf texted me to say that the biopsy can take up to 8 days to get the results due to one of them using dye. I've had stuff like that too and I don't remember it taking that long. 

It amazes me how many freaking health problems my family has.


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## pidge70

larry.gray said:


> I sure wouldn't go there!
> 
> What you should do though is get a couple of things set up:
> - You should be cleared to talk to all of the medical people. Not that you're making decisions for him, but should be able to hear all of the information direct.
> 
> - *Try to get a power of attorney if he's incapacitated. I would think you should be able to explain this to your brother.*


I asked my brother if he knew what Medical Power of Attorney meant. He said, I think so. I explained it to him and he said he was letting his gf do that. Wouldn't there need to be some legal document drawn up?


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## pidge70

Uptown said:


> Pidge, I'm so sorry to learn today about your brother's battle with cancer -- or what appears to be cancer. You both are in my prayers. As you likely know, the prognosis is better if the cancer is determined to be localized and thus can be cut out (or perhaps replaced with a liver transplant). The American Cancer Society states:
> In general, survival rates are higher for people who can have surgery to remove their cancer, regardless of the stage. For example, studies have shown that patients with small, resectable tumors who do not have cirrhosis or other serious health problems are likely to do well if their cancers are removed. Their overall 5-year survival is over 50%. For people with early-stage liver cancers who are able to have a liver transplant, the 5-year survival rate is in the range of 60% to 70%. See Survival rates for liver cancer​


Thank you Uptown. I wonder in the case of a liver transplant, if they cut out the cancerous part, if he would be eligible for a partial transplant? My 21yr old daughter, Joe and I are all willing to be tested. I'm sure the best chance for something like this would be from our youngest brother. The two of them are full siblings.


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## pidge70

larry.gray said:


> Oh Pidge, I'm so sorry. Prayers coming your way.
> 
> 
> 
> Have you tried? If the doc has caught on both are a bit slow, he may welcome a close family member who will help out.
> 
> On edit - glad you're hooking up with the hospital social worker.


Thank you larry, I appreciate it.


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## Anon Pink

Oh Pidge I'm so so sorry you are facing all these health crises at the same time. It is so overwhelming! You just keep going and keep going and it never seems to slow down.

Next time you talks to the social worker, see if she can arrange a psych eval. This will be very important if it is cancer because lemme tell ya sister, even a highly competent person can be totally over run with meds and various testing once you're out of the hospital.

Most cancer centers have nurse navigators to help with questions, scheduling, refilling meds, and act as a resource for other help like special equipment, special foods and OTC meds to treat side effects of treatment. 

My sister who lives with me has stage IV kidney cancer and is on Medicare/Medicaid...never can remember which one.

Now think about this, he has been living on his own for some time and has a GF. While you may not like her, she is important to him. She brings something of value to his life so I don't recommend you completely discount her presence, especially if they live together.

Coordinating care for a sick loved one is difficult. Coordinating care from a distance is extremely difficult but can be done. You just have to get medical power of attorney and honestly, the best way to do that, from what you've written is to share that with the girl friend. Once your brothers care team realizes who is most likely to respond that will become the go to person.

I guess I'm suggesting you prepare yourself to let go of your desire to have him with you. Although that most likely would be in his best interest, without him being declared incompetent prior to getting sick, it's not easily going to be declared now.

When my brother first was diagnosed with ALS he was separated and living alone. We all offered (my other siblings) to have him come live with us so we could take care of him. But he insisted he live alone and then his GF moved in with him. So we had to take turns going to his house to bath feed and dress him and stay with him until she got home from work. 

Just be prepared for anything and try to recite the serenity prayer each time you want to slap someone! You're going to need it.


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## Ikaika

pidge70 said:


> I asked my brother if he knew what Medical Power of Attorney meant. He said, I think so. I explained it to him and he said he was letting his gf do that. Wouldn't there need to be some legal document drawn up?



Yes, most hospitals have the capacity to do this in house. Normally done right after initial assessments and the gravity of the situation is made. The question would be asked of him and he could name someone. Hospitals prefer someone who is physically present. That is the way it was done in my sisters case. You can have separate power of attorneys for different capacities, medical and financial are two most important.


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## Ikaika

pidge70 said:


> His gf texted me to say that the biopsy can take up to 8 days to get the results due to one of them using dye. I've had stuff like that too and I don't remember it taking that long.
> 
> It amazes me how many freaking health problems my family has.



Eight days seems a bit long, I think about half that time unless they send all their biopsies out to independent labs. They are doing histology assessments, followed by test for specific genetic and protein markers.


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## karole

You can download a Durable Healthcare Power of Attorney form from Legal Zoom. Your brother would then need to sign the document in front of a notary and 2 witnesses (no of witnesses may vary depending on the state). It's a simple form to complete and you can do it without an attorney. The Durable Health Care POA, only pertains to health care. In order to make decisions re: financial aspects, etc. you would need a General Power of Attorney that you can also download and complete from the above-website.


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## pidge70

Anon Pink said:


> Oh Pidge I'm so so sorry you are facing all these health crises at the same time. It is so overwhelming! You just keep going and keep going and it never seems to slow down.
> 
> Next time you talks to the social worker, see if she can arrange a psych eval. This will be very important if it is cancer because lemme tell ya sister, even a highly competent person can be totally over run with meds and various testing once you're out of the hospital.
> 
> Most cancer centers have nurse navigators to help with questions, scheduling, refilling meds, and act as a resource for other help like special equipment, special foods and OTC meds to treat side effects of treatment.
> 
> My sister who lives with me has stage IV kidney cancer and is on Medicare/Medicaid...never can remember which one.
> 
> Now think about this, he has been living on his own for some time and has a GF. While you may not like her, she is important to him. She brings something of value to his life so I don't recommend you completely discount her presence, especially if they live together.
> 
> Coordinating care for a sick loved one is difficult. Coordinating care from a distance is extremely difficult but can be done. You just have to get medical power of attorney and honestly, the best way to do that, from what you've written is to share that with the girl friend. Once your brothers care team realizes who is most likely to respond that will become the go to person.
> 
> I guess I'm suggesting you prepare yourself to let go of your desire to have him with you. Although that most likely would be in his best interest, without him being declared incompetent prior to getting sick, it's not easily going to be declared now.
> 
> When my brother first was diagnosed with ALS he was separated and living alone. We all offered (my other siblings) to have him come live with us so we could take care of him. But he insisted he live alone and then his GF moved in with him. So we had to take turns going to his house to bath feed and dress him and stay with him until she got home from work.
> 
> Just be prepared for anything and try to recite the serenity prayer each time you want to slap someone! You're going to need it.


His gf is very combative with all of us. Her family cannot stand my brother. Good times. I feel I have a very good reason to dislike her for some crap she pulled a few years ago. She has cheated on my brother with a woman (his gf is bisexual) and she thinks it is okay. That isn't the only reason I dislike her. I feel if he does have cancer, she is being extremely selfish not wanting him to come home where we can take care of him. He has no family in AZ. She has her parents there. 

I do appreciate your response though AP.


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## pidge70

karole said:


> You can download a Durable Healthcare Power of Attorney form from Legal Zoom. Your brother would then need to sign the document in front of a notary and 2 witnesses (no of witnesses may vary depending on the state). It's a simple form to complete and you can do it without an attorney. The Durable Health Care POA, only pertains to health care. In order to make decisions re: financial aspects, etc. you would need a General Power of Attorney that you can also download and complete from the above-website.


Thank you for this information karole. It is much appreciated.


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## pidge70

No updates or anything from his gf. I haven't bothered to call the hospital. If he ends up being really sick and dying, I will go out there. Maybe if I show up, he will come home. I don't think he really believes I will come out there.


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## Ikaika

pidge70 said:


> No updates or anything from his gf. I haven't bothered to call the hospital. If he ends up being really sick and dying, I will go out there. Maybe if I show up, he will come home. I don't think he really believes I will come out there.


Don't forget, let your friends help you if the cost is beyond your budget at the moment. Some day you can always pay it forward to someone else


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## joe kidd

Thanks for the offers but if she goes I can make it work. Just means some longer hours for a while.


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## joe kidd

His GF is in his ear. While I understand that Pidge wants him here and we could facilitate his care much better than she ( don't mean to sound crass but the GF is quite a dullard), Pidge has to remember he is grown man and the decision is his.


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## pidge70

So, talked to my mom and my brother. It is Stage IV. No cancer detected anywhere else. He just had a MRI on his brain done. Not sure why. Apparently the size of the mass was exaggerated. It is a small growth. I told him to ask if it could be cut out or if he would be eligible for a partial transplant. They have opted not to start him on chemo as it would destroy his liver. I'm going to have to get out there soon.


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## Anonymous07

pidge70 said:


> So, talked to my mom and my brother. It is Stage IV. No cancer detected anywhere else. He just had a MRI on his brain done. Not sure why. Apparently the size of the mass was exaggerated. It is a small growth. I told him to ask if it could be cut out or if he would be eligible for a partial transplant. They have opted not to start him on chemo as it would destroy his liver. I'm going to have to get out there soon.


It sounds like surgery can be an option, which is good. 

Keep us updated.


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## Ikaika

pidge70 said:


> So, talked to my mom and my brother. It is Stage IV. *No cancer detected anywhere else*. He just had a MRI on his brain done. Not sure why. Apparently the size of the mass was exaggerated. It is a small growth. I told him to ask if it could be cut out or if he would be eligible for a partial transplant. They have opted not to start him on chemo as it would destroy his liver. I'm going to have to get out there soon.


I don't understand the bold comment given the diagnosis. You may want to contact someone directly associated with his case. I am sorry to hear he is a stage IV cancer patient. I know what they may tell you, and yes you will want to get out there soon and I would find a way to bring him back home.

Ask for the specific TNM diagnosis, that will tell you a lot more information.


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## pidge70

I guess it is localized to his liver.
_Posted via Mobile Device_


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## Ikaika

pidge70 said:


> I guess it is localized to his liver.
> _Posted via Mobile Device_


Call the social worker contact and see if they will give you the specific TNM diagnosis. That will tell you a lot more than what can often be fuzzy staging diagnosis.

Most clinicians don't use the term stage IV unless it has T1 through T4 (size of initial tumor), N1 - N3 (lymph node involvement) and M1 (metastasized to peripheral tissue from primary)... important to ask. Any number less than those listed or one that says "X" or "is" and you may want to verify how they came up with the staging diagnosis.


----------



## pidge70

Please tell me it is okay for me to eat my feelings tonight. I just want to chow on a bacon cheeseburger and a chocolate chip frappe.....


----------



## Ikaika

pidge70 said:


> Please tell me it is okay for me to eat my feelings tonight. I just want to chow on a bacon cheeseburger and a chocolate chip frappe.....



It is ok, but also want you to be fully informed. Again, I hope you heard wrong about the staging and wish for the best. Take care

Malama pono.


----------



## Homemaker_Numero_Uno

Pidge they just want to make sure it did not find its way to the brain. Sounds like it didn't. Maybe they wanted to make sure it didn't *start* there. 

When I had an atypical diagnosis, they checked for cancer everywhere. *Apparently even the start of cancer anywhere in the body can cause some psych problems. *(Mine was anaphylaxis/lead poisoning, not cancer, but they still checked, had emergency brain MRI.)


----------



## pidge70

This would be so much easier to talk about then trying to type. 

Talked to the nurse, she couldn't tell me much. Another note was put in his chart for the doctor to call me.

It is in his lymph nodes. MRI on his brain came back clear. They are trying to see where it came from. Colonoscopy was clear as well. She had no idea how large the growth on his liver was. 

I found out his paternal grandfather died from melanoma that went into his lymph nodes. Grandpa was dead 6 months after they removed the nodes. Luckily, melanoma isn't hereditary. I don't think anyway.


----------



## pidge70

Homemaker_Numero_Uno said:


> Pidge they just want to make sure it did not find its way to the brain. Sounds like it didn't. Maybe they wanted to make sure it didn't *start* there.
> 
> When I had an atypical diagnosis, they checked for cancer everywhere. *Apparently even the start of cancer anywhere in the body can cause some psych problems. *(Mine was anaphylaxis/lead poisoning, not cancer, but they still checked, had emergency brain MRI.)


See, what I don't get is, they apparently don't know what kind of cancer it is, yet they are saying Stage IV? Apparently his test results came back "unknown".


----------



## mablenc

I am sorry to read this Pidge. I hope you find answers and treatment soon. 

((Hugs))


----------



## Ikaika

pidge70 said:


> See, what I don't get is, they apparently don't know what kind of cancer it is, yet they are saying Stage IV? Apparently his test results came back "unknown".



So from what I am picking up it sounds like T1 - T4, a N1 - N3 and Mx... The only reason they would do a brain MRI would have have to be with the characteristics of the protein markers. Sounds like they may have detected an over expression of something like PEA-15, characteristic of an astrocytoma.

A stage IV because most liver carcinomas don't have that protein marker and they are looking for a possible origin outside the liver. Much more typical for liver carcinomas to originate in the GI tract.

ETA: if you could get some clear answers, I think it will be better to understand where to proceed.


----------



## pidge70

mablenc said:


> I am sorry to read this Pidge. I hope you find answers and treatment soon.
> 
> ((Hugs))


Thank you!


----------



## pidge70

drerio said:


> So from what I am picking up it sounds like T1 - T4, a N1 - N3 and Mx... The only reason they would do a brain MRI would have have to be with the characteristics of the protein markers. Sounds like they may have detected an over expression of something like PEA-15, characteristic of an astrocytoma.
> 
> A stage IV because most liver carcinomas don't have that protein marker and they are looking for a possible origin outside the liver. Much more typical for liver carcinomas to originate in the GI tract.
> 
> ETA: if you could get some clear answers, I think it will be better to understand where to proceed.


Yeah, clear answers would be nice. MRI and colonoscopy all clear.


----------



## Ikaika

pidge70 said:


> Yeah, clear answers would be nice. *MRI and colonoscopy all clear*.



This much is promising. I wish I could ask the doctor questions and give you the answers you need.


----------



## pidge70

drerio said:


> This much is promising. I wish I could ask the doctor questions and give you the answers you need.


I wish you could too.
_Posted via Mobile Device_


----------



## Homemaker_Numero_Uno

pidge70 said:


> See, what I don't get is, they apparently don't know what kind of cancer it is, yet they are saying Stage IV? Apparently his test results came back "unknown".


That's a good diagnosis to have, it will get him the attention and the care he needs. Maybe it will be changed after, when more information is gathered up from various tests and there is a team meeting/referrals, etc. It may be a humanitarian diagnosis, don't knock it.


----------



## Uptown

pidge70 said:


> See, what I don't get is, they apparently don't know what kind of cancer it is, yet they are saying Stage IV?


Pidge, identifying the stage is easy. If it has spread to the lymph nodes, it is considered to be stage 4. To know what type of cancer it is, however, can require knowing where it came from. My aunt, for example, had colon cancer that had spread into her lungs. It was not called "lung cancer" because it had not originated there. This is why they likely are searching for the "primary" tumor -- where it originated. As to your question about partial transplants, I don't know a thing about that. Sorry.


----------



## Ikaika

Again Pidge, get the clinical diagnosis, don't accept a staging, get the TNM numerical designation. 

And, I don't mean to come off technical... I just want to help you understand. I hope the for all the best, sending healing Aloha

Malama pono

ETA: I don't want to create any more fear than you have, so anytime you like tell me to ****** off and I will.


----------



## pidge70

My brother just called, he said he has to drink some "chalky stuff". Barium sulfate maybe? They are going to be testing his stomach next.


----------



## Ikaika

pidge70 said:


> My brother just called, he said he has to drink some "chalky stuff". Barium sulfate maybe? They are going to be testing his stomach next.




Looking for a GI tumor - specifically upper, stomach, duodenum, etc.


----------



## pidge70

drerio said:


> Again Pidge, get the clinical diagnosis, don't accept a staging, get the TNM numerical designation.
> 
> And, I don't mean to come off technical... I just want to help you understand. I hope the for all the best, sending healing Aloha
> 
> Malama pono
> 
> ETA: I don't want to create any more fear than you have, so anytime you like tell me to ****** off and I will.


You are helping not hindering. I thank you very much.


----------



## pidge70

According to his gf, he's decided to stay there. I called our mother and told her I can't do this anymore. He wants to come home, he wants to stay. He can't make up his damn mind. I know that hag is in his ear. I'm done with the whole situation. I'm sorry but, I feel if his gf truly loved him, she would want him to be with his family. She cannot take care of him and does not have anyone that could help her with him. It's whatever.


----------



## Miss Independent

I'm sorry about your situation. Can you go there and talk to him face to face?


----------



## pidge70

spinsterdurga said:


> I'm sorry about your situation. Can you go there and talk to him face to face?


I'm afraid if I did go and she started to run her mouth, I'd knock the sh!t out of her.
_Posted via Mobile Device_


----------



## Miss Independent

pidge70 said:


> I'm afraid if I did go and she started to run her mouth, I'd knock the sh!t out of her.
> _Posted via Mobile Device_



I think that you should go and have a conversation with his doctor and him without her...is it possible to talk with him without her? Your brother needs you if she can't properly take care of him


----------



## Ikaika

pidge70 said:


> According to his gf, he's decided to stay there. I called our mother and told her I can't do this anymore. He wants to come home, he wants to stay. He can't make up his damn mind. I know that hag is in his ear. I'm done with the whole situation. I'm sorry but, I feel if his gf truly loved him, she would want him to be with his family. She cannot take care of him and does not have anyone that could help her with him. It's whatever.


I really feel for you, I am sorry to hear about it. So, I think for your brother's sake you should at least find out if you could continue to kept informed by an official hospital representative at each significant point of his care. If it really gets down to being as bad as it could get (which I hope it does not), she may have a change of heart. There are very few people that can truly take on the role of caring for someone in their final days. It is tough and she does not sound like one who could or would do it. 

So, stay in touch, just avoid any communication with the gf.


----------



## Ikaika

I know it is a tough topic, but have you heard anything? How about the results from the gastric barium scan? 

Again, tell me if it is none of my business,

Malama pono


----------



## pidge70

He's going to the Mayo Clinic in Phoenix. Started chemo today. My mother said they have to kill the cancer and then cut out the shell. (Tumor) From what she said, all they found in his stomach was an ulcer. She was drunk when she called so....who knows.
_Posted via Mobile Device_


----------



## Ikaika

pidge70 said:


> He's going to the Mayo Clinic in Phoenix. Started chemo today. My mother said they have to kill the cancer and then cut out the shell. (Tumor) From what she said, all they found in his stomach was an ulcer. She was drunk when she called so....who knows.
> _Posted via Mobile Device_


I really hope for the best and that he responds well to the chemo. Sending Healing Aloha. My thoughts are with you guys right now.


----------



## pidge70

drerio said:


> I really hope for the best and that he responds well to the chemo. Sending Healing Aloha. My thoughts are with you guys right now.


Thank you sir. You are without a doubt a good man.
_Posted via Mobile Device_


----------



## Uptown

pidge70 said:


> My mother said they have to kill the cancer and then cut out the shell. (Tumor)... She was drunk when she called so....who knows.


When she's sober, ask her if the doctors located the primary. They can't cut it out if they don't know where it is. The last you had heard on that issue was that they were still looking for it, apparently in the GI tract. Perhaps it turned out to be a GI tumor as Drerio had suspected.


----------



## joe kidd

That's the rub uptown, when she is sober. Guess she will have to catch her when she is broke.


----------



## SteveK

Sorry I missed this thread when it first started. I work for one of the top Specialty Pathology/ Oncology labs in the country.

We have a world recognized Lymphoma Pathologist on staff.

If you have questions there may be some answered for you on this Web Site.

For Personalized Cancer Treatment, Ask: 'Is My Cancer Different?'


----------



## Ikaika

Have you heard from your brother recently? If so, how is he doing?


----------



## heartsbeating

Wondering as well... how is he, Pidge?


----------



## SteveK

Pidge

Please don't be afraid to PM me if you have any questions.

If you would like any consultations on your Brothers Biopsy etc let me know.

I also have connections at a company that offers a NEXT-Gen Sequencing product. These are full Genetic Workups that sometimes can get you into Clinical Studies, and at this point in the game it could not hurt to try anything to save him...even though there are never any guarantees.

My own Dad had Spinal Bone cancer in the Mid-1960's, They treated him by High dose Radiation. then in 2001 he developed Esophageal Cancer, which they cured through Surgery, but then a few years later from the Radiation and all of the Chemo, his Tumor Suppressor Gene just shut down and he had four distinct cancers and passed.

These NGS tests had they been available back in 2001 may have led to him have an extended chance for survival.

I really feel for you..

I have always said I make a great living working in Cancer Diagnostics, but at least I know that what my company does is try to save people or help them to have a little more time.

I can also tell you that in the last 20 years the only good thing that has come from HIV is the leaps and bounds that have been made in treatments. 

I wish you the best and I pray for your family...


----------



## pidge70

From what our dad says, he is doing fine. He's had one round of chemo and that's about all I know. I just don't have it in me to contact him directly at the moment.


----------



## pidge70

I talked to my mother yesterday. My brother only had one round of chemo. When he went back to the doctor, they told him they no longer take his insurance. Our mother said he told her he is tired all the time. He fell asleep while talking to her on the phone the other day. 

My brother told my mom he saw a text on his gf's phone. It was to a guy that said, "We can be together after (my brother's name) goes. I was like WTF is that supposed to mean? Goes? Does she mean dies? This is why I do not like/trust this girl. 

My mom was adamant that we need to bring him back. I don't know what to do. I told her that I told him a month ago that I would need to get him then.


----------



## Ikaika

pidge70 said:


> I talked to my mother yesterday. My brother only had one round of chemo. When he went back to the doctor, they told him they no longer take his insurance. Our mother said he told her he is tired all the time. He fell asleep while talking to her on the phone the other day.
> 
> My brother told my mom he saw a text on his gf's phone. It was to a guy that said, "We can be together after (my brother's name) goes. I was like WTF is that supposed to mean? Goes? Does she mean dies? This is why I do not like/trust this girl.
> 
> My mom was adamant that we need to bring him back. I don't know what to do. I told her that I told him a month ago that I would need to get him then.


I am so sorry to hear all of this pidge. I certainly hope you are able to bring him home and get him the care he needs. Seems to me he should be able to qualify for public assistance of some type to pay for his care. I really hope things turn around for the better. Sending you Aloha.


----------



## pidge70

Thanks drerio.

I had made so many phone calls here on his behalf. I was told by a woman at the cancer treatment center here that he would most likely qualify for SSI and medicare. I just don't know what to do. I am stressed about so many things and now this.


----------



## Coffee Amore

pidge70 said:


> I talked to my mother yesterday. My brother only had one round of chemo. When he went back to the doctor, they told him they no longer take his insurance. Our mother said he told her he is tired all the time. He fell asleep while talking to her on the phone the other day.
> 
> My brother told my mom he saw a text on his gf's phone. It was to a guy that said, "We can be together after (my brother's name) goes. I was like WTF is that supposed to mean? Goes? Does she mean dies? This is why I do not like/trust this girl.
> 
> My mom was adamant that we need to bring him back. I don't know what to do. I told her that I told him a month ago that I would need to get him then.


So they stopped his chemo because they don't accept his particular insurance plan? I guess that's within their rights as a business, but it's awful. When people are fighting for their lives as your brother is, they shouldn't have to go shopping for a new oncologist or hospital. I would get a local health care advocate to see what can be done. Maybe there's a local cancer support group that can give you advice about Medicare and services locally that might support him. I know the American Cancer Society for example provides $50 gas cards to patients (free of charge) to get to treatments.

He doesn't need the added stress of an unfaithful girlfriend. 
That's awful.


----------



## joe kidd

Delete


----------



## pidge70

So, the cancer has now spread to his lungs. According to my mother, they still have no idea what kind of cancer it is.


----------



## Almostrecovered

hugs


----------



## norajane

My heart goes out to you and your family, pidge.


----------



## Uptown

Pidge, you and your brother are in my prayers and thoughts. I hope they are able to stop the cancer with a combo of surgery, chemo, and radiation.


----------



## Coffee Amore

Pidge, I hope there are new treatments, clinical experiments he can qualify for. Hopefully, his doctor is looking into those kinds of things. I am still hoping for a very positive outcome.


----------



## IWantGreatMarriage

Hugs to you and your family


----------



## Unique Username

pidge70 said:


> Thanks drerio.
> 
> I had made so many phone calls here on his behalf. I was told by a woman at the cancer treatment center here that he would most likely qualify for SSI and medicare. I just don't know what to do. I am stressed about so many things and now this.


How old is your brother? If he is 60 or ovber you can get assistance at your local Area Agency on Aging to help fill out the paperwork for SSI and there are hospice benefits, and all sorts of things if he is a senior. You need a Case Manager to help get all the things necessary.

If he isn't 60 or older

then you go to or go online to your States FSSA site and apply for Medicaid. Once you get him a case Manager then they can help apply for other things.

I don't know any of his specifics - is he working? How did he have the insurance he does have that doesn't cover the chemo - I know that Medicaid does cover cancer treatments.

Also - if the cancer has made him disabled (unable to work) then he can get disability which is SSDI
SSI - is supplemental iinncome normally for low income seniors in addition to their Social Security...and for children.
Each State governs it - and on the FSSA site for your state their are explanations of income eligibility etc for each thing.

Your state probably also has a 211 - which is like a local clearing house for all charitable things avai;lable by county/city. You can look for 211 on the net or call 211.


----------



## mablenc

I'm sorry to read your lasted update. You and your family will be in my thoughts and prayers.
_Posted via Mobile Device_


----------



## Blossom Leigh

So sorry Pidge... my heart goes out to you and your family.


----------



## pidge70

Thank you.


----------



## clipclop2

do you live close by? 

went through this with a loved one a few years ago. I'm sorry your brother and your family are experiencing this.
_Posted via Mobile Device_


----------



## pidge70

I am over 1500 miles away. He is in Glendale, AZ and I am in Southeast Missouri.


----------



## ConanHub

Very sorry for you and your family. Actually made me cry.

I am praying for you, your brother and family.


----------



## clipclop2

Oh ack. You know you need to go see him, can you get away? There isn't much time.


----------



## pidge70

I know. I have to find the time and the money.
_Posted via Mobile Device_


----------



## Ikaika

pidge70 said:


> So, the cancer has now spread to his lungs. According to my mother, they still have no idea what kind of cancer it is.





Aloha


----------



## pidge70

drerio said:


> Aloha


thanks D


----------



## pidge70

The thought of flying scares the crap out of me. I have *NEVER *flown! I think it would be cheaper to drive as I would have to get a rental car in AZ. The downside is the drive is a little over 1500 miles. Approximately a 24hr drive and I won't have but a little over 3 days to get away. I can't miss school. I dunno what to do.


----------



## clipclop2

Fly. It is fun. Look out the window and wonder at the incredible planet below. Seeing the Earth like that it's a treat.


----------



## Ikaika

Live where I live and your only way is by air or ship. You will be fine:
http://youtu.be/AladpGEdmWM


----------



## pidge70

Ikaika said:


> Live where I live and your only way is by air or ship. You will be fine:
> http://youtu.be/AladpGEdmWM


I need to speak with you if at all possible. Paul is worse. My mom is in Arizona and they are waiting to see if the doctor will allow him to fly. He wants to come home. He has only been given till spring to live.


----------



## Coffee Amore

I'm really sorry to hear this, Pidge...


----------



## pidge70

Coffee Amore said:


> I'm really sorry to hear this, Pidge...


Thanks coffee, I appreciate it. The whole thing sucks so bad. He's too damn young.


----------



## pidge70

Talking to mom now, she said the doctor said he has angiosarcoma.


----------



## GTdad

I'm so sorry, Pidge. This has to be terrible to deal with.


----------



## pidge70

GTdad said:


> I'm so sorry, Pidge. This has to be terrible to deal with.


Thank you.


----------



## Anonymous07

I'm so sorry to hear Pidge.  Sending strength vibes your way.


----------



## pidge70

Anonymous07 said:


> I'm so sorry to hear Pidge.  Sending strength vibes your way.


Thanks girl, I appreciate it.


----------



## Blossom Leigh

Just my deepest heart to you Pidge...


----------



## Ikaika

pidge70 said:


> I need to speak with you if at all possible. Paul is worse. My mom is in Arizona and they are waiting to see if the doctor will allow him to fly. He wants to come home. He has only been given till spring to live.



Again, I'm real sorry sorry. I'm assuming you have read enough online about angiosarcoma. What you see online is fairly accurate and given what you are indicating this has had time to proliferate rapidly. This is likely the reason they are providing the prognosis over the hyperplasia in his lungs. 

Did they move him out of acute care and into some hospice care facility? If so, what I would do is see if you could contact a hospice provider in your area (preferably a home bound one) and see if they can coordinate the move for you. Do you think he is able to travel by commercial air at this stage? If so, you want to move him soon before he is unable to endure the flight. 

Or is there some other issue that you feel you would like to explore... Second opinion on his prognosis? There are a few experimental chemotherapeutic drugs for angiosarcoma, however they have a relatively low success rate and can have serious cardio risks.


----------



## pidge70

Ikaika said:


> Again, I'm real sorry sorry. I'm assuming you have read enough online about angiosarcoma. What you see online is fairly accurate and given what you are indicating this has had time to proliferate rapidly. This is likely the reason they are providing the prognosis over the hyperplasia in his lungs.
> 
> Did they move him out of acute care and into some hospice care facility? If so, what I would do is see if you could contact a hospice provider in your area (preferably a home bound one) and see if they can coordinate the move for you. Do you think he is able to travel by commercial air at this stage? If so, you want to move him soon before he is unable to endure the flight.
> 
> Or is there some other issue that you feel you would like to explore... Second opinion on his prognosis? There are a few experimental chemotherapeutic drugs for angiosarcoma, however they have a relatively low success rate and can have serious cardio risks.


He has been living with his gf. Mom said hospice comes 3 times a week. Paul is currently in the hospital suffering from dehydration. We are waiting on his doctor to clear him for flying.

I'd like to get him to see a doctor here. I know it doesn't look good, but I don't want to give up hope.
_Posted via Mobile Device_


----------



## Ikaika

pidge70 said:


> He has been living with his gf. Mom said hospice comes 3 times a week. Paul is currently in the hospital suffering from dehydration. We are waiting on his doctor to clear him for flying.
> 
> 
> 
> I'd like to get him to see a doctor here. I know it doesn't look good, but I don't want to give up hope.
> _Posted via Mobile Device_



Get it all lined up before the move. Just be prepared that many medical facilities don't share medical records and that if you take him to see someone they will likely go through the whole workup of procedures. 

You still want to contact a hospice in your area. One thing hospice does not recommend is IV fluids. They normally deem that as unnecessary for end of life care. You may want to negotiate for it as a form of comfort care. It will also mean you or someone will have to learn how to change out the IV fluid bags. It's not that hard. I did it when my FIL was on hospice care and showed my BIL how to do it when I was away for extended periods at work.


----------



## Ikaika

I totally support your desire to hold onto hope. I would do the same. However, make sure you find that point at which the quality time away from all the probing needles and beeping medical machinery is enough time for you to have quality moments to share with him in his final days. He was dealt a horrible hand, but he is lucky to have a caring sister.


----------



## SlowlyGettingWiser

I'm not here much, Pidge, but I'm glad I dropped in to read this and send you *HUGS* and best wishes! Peace to all of you!


----------



## pidge70

SlowlyGettingWiser said:


> I'm not here much, Pidge, but I'm glad I dropped in to read this and send you *HUGS* and best wishes! Peace to all of you!


Thank you SGW.
_Posted via Mobile Device_


----------



## happy as a clam

pidge... I'm so sorry about your brother 

Sending hugs and prayers...
_Posted via Mobile Device_


----------



## pidge70

happy as a clam said:


> pidge... I'm so sorry about your brother
> 
> Sending hugs and prayers...
> _Posted via Mobile Device_


Thanks happy....you're a good clam.
_Posted via Mobile Device_


----------



## EleGirl

pidge70,


I'm sorry that your brother, you and your family are going through this. It must a very hard to deal with. {{{{{HUGS}}}}}


----------



## pidge70

EleGirl said:


> pidge70,
> 
> 
> I'm sorry that your brother, you and your family are going through this. It must a very hard to deal with. {{{{{HUGS}}}}}


Thank you Ele. 38 is just too damn young to die. I'm trying to still hold out hope.
_Posted via Mobile Device_


----------



## pidge70

Ikaika said:


> Get it all lined up before the move. Just be prepared that many medical facilities don't share medical records and that if you take him to see someone they will likely go through the whole workup of procedures.
> 
> You still want to contact a hospice in your area. One thing hospice does not recommend is IV fluids. They normally deem that as unnecessary for end of life care. You may want to negotiate for it as a form of comfort care. It will also mean you or someone will have to learn how to change out the IV fluid bags. It's not that hard. I did it when my FIL was on hospice care and showed my BIL how to do it when I was away for extended periods at work.


I'm going to start making calls tomorrow. Thank you.
_Posted via Mobile Device_


----------



## Ikaika

pidge70 said:


> Thank you Ele. 38 is just too damn young to die. I'm trying to still hold out hope.
> _Posted via Mobile Device_



It is too young... I am with you on holding out hope. When you get your brother home. Let me know and I can help you with expectations just to help ease your mind through this tough time. 

Aloha and Malama pono


----------



## Pluto2

I'm so sorry Pidge. Every brother needs a sister who loves them this much.


----------



## karole

So sorry Pidge - sending good thoughts your way.


----------



## pidge70

Thank you....you guys are too kind.
_Posted via Mobile Device_


----------



## MountainRunner

I know I'm new here, but I just read your story Pidge. Please accept my most heartfelt sympathies for you, your family, and a prayer for your brother. *big hug*


----------



## Ikaika

How are you guys doing today? Any word on either side?


----------



## pidge70

No news yet.
_Posted via Mobile Device_


----------



## pidge70

MountainRunner said:


> I know I'm new here, but I just read your story Pidge. Please accept my most heartfelt sympathies for you, your family, and a prayer for your brother. *big hug*


Thank you.
_Posted via Mobile Device_


----------



## pidge70

My mom and brother are supposedly flying out tomorrow. His gf wants them out. If they do fly in, I will be driving to 2hrs to St Louis to get them, then driving them 2hrs to mom's, then 2hrs back home to Missouri.
_Posted via Mobile Device_


----------



## Coffee Amore

You're on the road for a long time. Safe travels...I hope the weather isn't too bad.


----------



## pidge70

Hopefully the roads are nice and clear. We just got a ton of sleet and snow a couple days ago.
_Posted via Mobile Device_


----------



## Ikaika

pidge70 said:


> Hopefully the roads are nice and clear. We just got a ton of sleet and snow a couple days ago.
> _Posted via Mobile Device_



Do be careful.


----------



## pidge70

Omg.....he looks awful. He's so gaunt. I started crying, but I didn't let him see me.
_Posted via Mobile Device_


----------



## Coffee Amore

pidge70 said:


> Omg.....he looks awful. He's so gaunt. I started crying, but I didn't let him see me.
> _Posted via Mobile Device_




I know how hard this must be for for you, for him and the entire family.


----------



## Ikaika

pidge70 said:


> Omg.....he looks awful. He's so gaunt. I started crying, but I didn't let him see me.
> _Posted via Mobile Device_



I'm so sorry to hear. Aloha


----------



## pidge70

He looks and sounds like a very old man. He can hardly walk which I am sure is mostly due to the hernia. He is on so much morphine it is ridiculous. I wrote down all the medications he is on and it added up to 20.


----------



## Ikaika

pidge70 said:


> He looks and sounds like a very old man. He can hardly walk which I am sure is mostly due to the hernia. He is on so much morphine it is ridiculous. I wrote down all the medications he is on and it added up to 20.



I know hope is still a strong driving force, as it should be. But other than the morphine, what function are the other medications providing for his care? I would find a primary physician that can make a clear assessment on all these medications in terms of the quality to life they are providing to him. Think at this point as being an active team member in his care. I know it's hard, but he really needs you to be his strongest advocate. So, don't just leave it up to the medical professionals. Ask the hard questions, but also be ready to make the hard decisions (what is best for him). 

Malama pono


----------



## pidge70

He is also on Celexa, Ativan, Klonipan, and a multitude of other things. All the morphine is making him constipated so he has to take stuff to help with that. He is on 2 different medications for nausea. I don't understand all the morphine. He has 3 pill bottles of it and a bottle of liquid. All total he is on about 1000mg of morphine a day in pill form. The liquid he is taking 1.2ml under his tongue 4 times a day. The morphine is a mix of IR and ER versions.


----------



## Ikaika

pidge70 said:


> He is also on Celexa, Ativan, Klonipan, and a multitude of other things. All the morphine is making him constipated so he has to take stuff to help with that. He is on 2 different medications for nausea. I don't understand all the morphine. He has 3 pill bottles of it and a bottle of liquid. All total he is on about 1000mg of morphine a day in pill form. The liquid he is taking 1.2ml under his tongue 4 times a day. The morphine is a mix of IR and ER versions.



He is on too much morphine. You need to get a physician who understands palliative care. If he is still eating by mouth, a change in diet can help with nausea.


----------



## pidge70

Ikaika said:


> He is on too much morphine. You need to get a physician who understands palliative care. If he is still eating by mouth, a change in diet can help with nausea.


My mom and I both thought he was on too much morphine. 

Can you take a look at this link if you get a chance? Do you think this sounds like it would be a good place? 

Our Treatment Approach -- Siteman Cancer Center

If I am bothering you with all my questions, please let me know.


----------



## Ikaika

pidge70 said:


> My mom and I both thought he was on too much morphine.
> 
> 
> 
> Can you take a look at this link if you get a chance? Do you think this sounds like it would be a good place?
> 
> 
> 
> Our Treatment Approach -- Siteman Cancer Center
> 
> 
> 
> If I am bothering you with all my questions, please let me know.



I will look at it and get back to you. It is no bother.


----------



## Ikaika

I'm very familiar with the Siteman Cancer center. They are associated with the Wustl medical school. I did a summer research fellow there as well as the Barnes jewish medical center, which is right on their main campus. Top notch facility and in my mind just as good as what you would get at Harvard or in the Washington, D.C. area. 

So, start by finding a medical oncologist, these are generalist in the area of cancer. And hopefully at a satellite location closer, so you won't have to travel as far. Be sure to listen carefully as oncologist like to talk in probabilities of treatments. Ask a lot of hard questions and focus a lot on the quality of his care not just some magical cure. This is why I think currently he is on too much morphine. Too often physicians don't always understand how to deal with the balance of palliative care and quality of life. Also consult with a palliative care physician. Be a strong advocate for him, and question any medication and care provided. You are a team member, equal in his care as any M.D. or PhD. . 

It is worth it to at least give chance at a hope of life, not giving up right away. But be sober enough to recognize when the treatment is reducing your quality with him. 

However, I do want to emphasize one thing you need to find is a hospital bed for him at home. Do this very soon. There are many organizations you can rent from. Even if they do treat him, it will likely be outpatient care. He needs to have a safe and comfortable environment at home. These beds will provide ease of care if he no longer is able to move on his own or finds it difficult to breath. You need to move him to reduce any bed sores and position him so he can breath easier. 

Hold his hand talk with him as frequently as you can. You would be surprised how much this alone can relieve his pain, and then less morphine is needed. 

I really wish you folks the best. Let me know if there is anything that confuses you, it really is no bother.


----------



## pidge70

Siteman is only 2hrs from me and 2hrs from my mom's, which is where my brother is staying. It would just be a lot of driving as I would have to drive 2hrs to my mom's in Illinois to pick him up, and then drive 2hrs to the center. I don't care about the driving for me, I just want him to be able to get the best chance he can. 

I told my mother earlier today that one of the first things she needs to do tomorrow is find a way to get him a hospital bed. My brother will be getting on Medicaid back home and my parents definitely have no extra money. They can barely feed themselves which is one of the many reasons I worry about him staying there. 

I got on my knees in front of him before I left last night, I held both of his hands. I told him that I loved him, that I am his big sister and it is my job to protect and take care of him. I told him that I would do everything in my power to help him. He told me to stop as he started crying. He said he did not want to die. I almost lost it myself. 

We had such a sh!tty childhood. I protected him for the most part, Hell, I mostly raised him and our youngest brother. He has stated multiple times over the years how he wished he could die. He knows there is something about himself that is not quite "right." He has so much anger. The irony is now he most likely will die. I can relate to that because of when I almost died a couple years ago. I have multiple failed suicide attempts under my belt, 14 at last count. He and I when faced with impending death, decided that maybe we didn't want to die as bad as we thought.

I quit my job last month so I have time to help him. I only have one class on campus 2 days a week. My other classes are online. So I have time, just limited financially in how much I can do. My parents are not able to contribute at all. Nonetheless, I will do whatever it takes to help him. It's my job. I am the big sister.

I truly appreciate all your help sir. I would love to one day meet you and your beautiful family so that I can tell you in person how much of a Godsend your words have been. You have always been supportive of me and my family. You are a wonderful human being. 

Your given name suits you. It is also my brother's middle name. 

I'm not sure if this is right.....I hope so. 

Hiki Akua 'oe ā e mālama mai, pilialoha.


----------



## Ikaika

pidge70 said:


> Siteman is only 2hrs from me and 2hrs from my mom's, which is where my brother is staying. It would just be a lot of driving as I would have to drive to mom's, pick him up, and then drive to the center. I don't care about the driving for me, I just want him to be able to get the best chance he can.
> 
> I told my mother earlier today that one of the first things she needs to do tomorrow is find a way to get him a hospital bed. My brother will be getting on Medicaid back home and my parents definitely have no extra money. They can barely feed themselves which is one of the many reasons I worry about him staying there.
> 
> I got on my knees in front of him before I left last night, I held both of his hands. I told him that I loved him, that I am his big sister and it is my job to protect and take care of him. I told him that I would do everything in my power to help him. He told me to stop as he started crying. He said he did not want to die. I almost lost it myself.
> 
> We had such a sh!tty childhood. I protected him for the most part, Hell, I mostly raised him and our youngest brother. He has stated multiple times over the years how he wished he could die. He knows there is something about himself that is not quite "right." He has so much anger. The irony is now he most likely will die. I can relate to that because of when I almost died a couple years ago. I have multiple failed suicide attempts under my belt, 14 at last count. He and I when faced with impending death, decided that maybe we didn't want to die as bad as we thought.
> 
> I quit my job last month so I have time to help him. I only have one class on campus 2 days a week. My other classes are online. So I have time, just limited financially in how much I can do. My parents are not able to contribute at all. Nonetheless, I will do whatever it takes to help him. It's my job. I am the big sister.
> 
> I truly appreciate all your help sir. I would love to one day meet you and your beautiful family so that I can tell you in person how much of a Godsend your words have been. You have always been supportive of me and my family. You are a wonderful human being.
> 
> Your given name suits you. It is also my brother's middle name.
> 
> I'm not sure if this is right.....I hope so.
> 
> Hiki Akua 'oe ā e mālama mai, pilialoha.



You are very welcome. And, the Hawaiian is great... 

I will say again, your brother was dealt a crappy hand but he was given a great sister. Just be strong for him. You guys have each other, and Ohana is so important at this point. 

Medicaid should pay for his hospital bed and any other medical supplies needed for his care. Also be on the lookout for cancer support groups some of which may help in providing some support, food for him etc. I really hope for the best. Also, don't forget to take of yourself.


----------



## Ikaika




----------



## joe kidd

I told her to focus on her brother I'll worry about work. She wants me to go with her to see him next week, I would like to visit with him but.... I don't know how to put it, it's been a while since I have seen him and I don't want to see him in this state . Am I coming off right? Maybe what I'm trying to say is I want to remember him for how he was and not what he has become. Maybe I'm just projecting how I would feel if I was in that situation . I want to remember the man I knew and not the disease.


----------



## Ikaika

joe kidd said:


> I told her to focus on her brother I'll worry about work. She wants me to go with her to see him next week, I would like to visit with him but.... I don't know how to put it, it's been a while since I have seen him and I don't want to see him in this state . Am I coming off right? Maybe what I'm trying to say is I want to remember him for how he was and not what he has become. Maybe I'm just projecting how I would feel if I was in that situation . I want to remember the man I knew and not the disease.


I certainly empathize with how you feel. When my sister was in ICU, not every family member could handle dealing the situation. So some never came to visit. However, they helped the family in other ways. So, I can understand. While I may have gone there everyday after work, it was something I knew I could do to help her. 

However, the only thing I can say is sometimes it is more about the other person. If you think it would help him, as hard as it may be, you might want to at least spend a little time talking with him. It is hard, these are never easy things to deal with and everyone wrestles with them differently. Maybe a great medium ground is to record a message and have Pidge, bring it over for him to hear. But, for me, I don't think you should feel guilty for how to approach the situation.


----------



## skype

joe kidd said:


> I told her to focus on her brother I'll worry about work. She wants me to go with her to see him next week, I would like to visit with him but.... I don't know how to put it, it's been a while since I have seen him and I don't want to see him in this state . Am I coming off right? Maybe what I'm trying to say is I want to remember him for how he was and not what he has become. Maybe I'm just projecting how I would feel if I was in that situation . I want to remember the man I knew and not the disease.


Joe:
Please re-consider your decision to let Pidge go alone. I understand the reluctance and dread of seeing the destruction that cancer has caused in your BIL. But Pidge needs you there with her. When she had her brain surgery, she felt that you did not support her through that difficult time. Please don't make that mistake again.

It is also a long drive, and she will need someone to relieve her. She is going through one of the most trying times of her life, and you can be her rock.


----------



## Pluto2

Pidge, here a quick reference to the Missouri Hospice

Missouri Hospice and Palliative Care Association
www.mohospice.org 

They should be able to help with a hospital bed, and tons of other stuff.
We're thinking of you.


----------



## Pluto2

Pidge, here's a quick reference to the Missouri Hospice

Missouri Hospice and Palliative Care Association
Missouri Hospice and Palliative Care Association 

They should be able to help with a hospital bed, and tons of other stuff.
We're thinking of you.


----------



## joe kidd

I'm going. Putting aside my discomfort to be there for her. 
I also think he might like to see me.


----------



## Ikaika

joe kidd said:


> I'm going. Putting aside my discomfort to be there for her.
> I also think he might like to see me.



I think he will like it as well. Bless you brother 

Malama pono


----------



## pidge70

Pluto2 said:


> Pidge, here a quick reference to the Missouri Hospice
> 
> Missouri Hospice and Palliative Care Association
> Missouri Hospice and Palliative Care Association
> 
> They should be able to help with a hospital bed, and tons of other stuff.
> We're thinking of you.


Thanks for the link Pluto. My brother is in Illinois though with our parents.
_Posted via Mobile Device_


----------



## Pluto2

pidge70 said:


> Thanks for the link Pluto. My brother is in Illinois though with our parents.
> _Posted via Mobile Device_


Ooops my bad.
www.il-hpc.org

Be careful and take care of yourself, too.


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## pidge70

Hospice is in place. He got a hospital bed yesterday. Mom said hospice told her if he sees a doctor that he will no longer receive hospice. I don't understand that at all. 

Called the Siteman Center. They are going to try and get his medical records from Arizona. Can't get an appointment set until they know he has a way to pay. I told mom she needs to get the medicaid paperwork filled out and sent in immediately.


----------



## Ikaika

pidge70 said:


> Hospice is in place. He got a hospital bed yesterday. Mom said hospice told her if he sees a doctor that he will no longer receive hospice. I don't understand that at all.
> 
> Called the Siteman Center. They are going to try and get his medical records from Arizona. Can't get an appointment set until they know he has a way to pay. I told mom she needs to get the medicaid paperwork filled out and sent in immediately.



I can somewhat understand, it is about competing interest of the type of care he will receive. However, I would call hospice back and ask about adjusting his meds. This action will more often than not require a physician to intervene. Although different states have differing rules on prescription changes, that is who can and can't carry out these actions. He should be comfortable but coherent enough to spend as much quality time with family. It is important that you let them know your needs and goals for this situation. 

I hope the records transfer and the medicaid paper work can be done quickly. I hope for the best for him and you folks. 

Malama Pono


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## karole

Pidge, My dad passed away just last month. He was on hospice for about 3 months prior to his passing. I have to say, hospice was such a welcomed help for my sister and I as we were taking care of my dad ourselves. My dad was also on morphine, plus other pain meds as needed. Whenever we needed anything to do with my dad's meds, we asked the hospice nurse and she would review with his doctor and then made any adjustments, etc. Hospice got us whatever we needed, from a hospital bed, a foam air mattress to help prevent bed sores, even a bedside potty. They bathed my dad and checked his vitals, etc. each time they visited. The nurse was scheduled to come 3 times per week, but would come more often if we needed them to. My dad was able to keep his regular physician with the hospice agency we used. His doctor even came to my sister's house a couple of times to check on my dad. Hospice was invaluable to us and if it were not for them, my dad could of ended up in a nursing home and my sister and I didn't want to have to do that. 

One other thing, there are bad hospice agencies and good hospice agencies - you can switch agencies if you don't like the one you have (at least you can in the state I live in). There are really good agencies out there with caring and compassionate nurses.

I hope you get everything situated and your brother gets the best care possible. Take care of yourself too. I know how stressful something like this is.


----------



## Ikaika

karole said:


> Pidge, My dad passed away just last month. He was on hospice for about 3 months prior to his passing. I have to say, hospice was such a welcomed help for my sister and I as we were taking care of my dad ourselves. My dad was also on morphine, plus other pain meds as needed. Whenever we needed anything to do with my dad's meds, we asked the hospice nurse and she would review with his doctor and then made any adjustments, etc. Hospice got us whatever we needed, from a hospital bed, a foam air mattress to help prevent bed sores, even a bedside potty. They bathed my dad and checked his vitals, etc. each time they visited. The nurse was scheduled to come 3 times per week, but would come more often if we needed them to. My dad was able to keep his regular physician with the hospice agency we used. His doctor even came to my sister's house a couple of times to check on my dad. Hospice was invaluable to us and if it were not for them, my dad could of ended up in a nursing home and my sister and I didn't want to have to do that.
> 
> 
> 
> One other thing, there are bad hospice agencies and good hospice agencies - you can switch agencies if you don't like the one you have (at least you can in the state I live in). There are really good agencies out there with caring and compassionate nurses.
> 
> 
> 
> I hope you get everything situated and your brother gets the best care possible. Take care of yourself too. I know how stressful something like this is.



This, Pidge, great advice here.


----------



## Pluto2

Keep breathing Pidge.

Did hospice give Mom anything in writing about the services they are providing? At times like this is always better to be able to look at the paper than rely on your memory. Don't fret, everyone will work to keep your brother as comfortable as possible.


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## pidge70

Hospice has been there everyday. They are going to put him on a steroid of some sort to help with his appetite. Mom said he is mostly doing liquids. I'm getting some groceries in a little to take to him tomorrow. 

His oxygen has been running a little low, not horribly bad, but still. His BP is fine. He doesn't sleep much according to mom. 

Pubic Aid is supposed to try and rush his paperwork through so he can get a Medicaid card. Then maybe I can get him an appointment made at the Siteman Center. 

Mom said she heard something about using the smallpox virus that helps with cancer? Not sure about that craziness as I haven't had much time to research that. 

Me and all my kids are going to see him tomorrow. I'm kinda worried about Lil Joe getting too rambunctious. Hopefully I can keep him under control. 

My brother is in a lot of pain. The stupid untreated hernia doesn't help. He just seems so frail. He has no muscle tone anymore and he's so pale. His skin is very dry and even his fingernails are rough. 

God, I just want to take it all away from him. Mom said something earlier today about me taking over Medical Power of Attorney. I'm not quite sure what that entails. I feel somewhat stupid with some of this stuff.


----------



## pidge70

Pluto2 said:


> Keep breathing Pidge.
> 
> Did hospice give Mom anything in writing about the services they are providing? At times like this is always better to be able to look at the paper than rely on your memory. Don't fret, everyone will work to keep your brother as comfortable as possible.


I'll ask her tomorrow. They are providing a bed and pay for his medications. They also gave them a porta potty thing which he flat out refuses to use......lol

All I know is that hospice is provided through a non profit organization. I'll try to find out more tomorrow.


----------



## Ikaika

pidge70 said:


> Hospice has been there everyday. They are going to put him on a steroid of some sort to help with his appetite. Mom said he is mostly doing liquids. I'm getting some groceries in a little to take to him tomorrow.
> 
> His oxygen has been running a little low, not horribly bad, but still. His BP is fine. He doesn't sleep much according to mom.
> 
> Pubic Aid is supposed to try and rush his paperwork through so he can get a Medicaid card. Then maybe I can get him an appointment made at the Siteman Center.
> 
> Mom said she heard something about using the smallpox virus that helps with cancer? Not sure about that craziness as I haven't had much time to research that.
> 
> Me and all my kids are going to see him tomorrow. I'm kinda worried about Lil Joe getting too rambunctious. Hopefully I can keep him under control.
> 
> My brother is in a lot of pain. The stupid untreated hernia doesn't help. He just seems so frail. He has no muscle tone anymore and he's so pale. His skin is very dry and even his fingernails are rough.
> 
> God, I just want to take it all away from him. Mom said something earlier today about me taking over Medical Power of Attorney. I'm not quite sure what that entails. I feel somewhat stupid with some of this stuff.



Using viral therapy is not standard protocol and still somewhat experimental. I would be surprised if Medicaid would cover it, even if you could find someone willing to do it. As a correction, it is not chicken pox, rather measles. Even then it is still not on par with standard therapy 

http://www.ncbi.nlm.nih.gov/pubmed/19203112

The pain issue should be an immediate concern, and this is something hospice needs to address, comfort care. Unfortunately his low muscle tone is a contributing factor in his hernia. It is also important (because of his low muscle tone) that you are careful in moving him as he is prone to joint dislocations. Is he on any liquids by mouth or iv? 

So medical PA becomes an issue when he can no longer make decisions for himself. The main thing you want is to find out are his wishes, DNR, etc... I had medical PA over my sister and I had to make the decision to remove her from life support when all options had been exhausted and she was unable to communicate any longer. You will not likely be in this situation. However, these are the typical decisions a medical PA would make. 

Malama pono


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## Pluto2

Talk to your brother about how he wants things handled. When the time comes that he can't effectively communicate, either from the meds, pain etc., then you make sure his wishes are followed. It is a loving gift to do this for him.

I had my Mom's PA the last couple years of her life. She had a long list of ailments topping off with vascular dementia. I arranged in-home care for her and if something was up the aid would call me. Mom refused to call the doctor no matter how she was feeling. So I would call the MD who understood Mom's condition, I'd make an appointment for her and then the office would call Mom to "remind" her of her upcoming appointment. It made her happier.


----------



## Pluto2

How are you holding up, Pidge?


----------



## pidge70

Pluto2 said:


> How are you holding up, Pidge?


AS well as can be expected. This whole thing has made me have even less patience it seems. I'm scared, which makes me feel weak, which ultimately pisses me off. 

The hospice paperwork diagnosis says that he has "other malignant neoplasm without specification of site." Not sure what that means.

I have a copy of a CT report that says:Clinical indication:Lung cancer

Findings:There is interval increase in size and number of metastatic nodules in the lung base bilaterally. Imaging of the upper abdomen shows no significant change in the patient's known metastatic focus in the inferior aspect the right lobe of the liver. The extensive periaortic and aortocaval adenopathy is unchanged. Liver, spleen, and kidneys are grossly unremarkable. There is a cyst from the medial aspect of the right kidney. No perinephric fluid seen. No local bowel pathology seen. Imaging through the lower abdomen and pelvis shows a large left inguinal hernia unchanged. No bowel obstruction is noted.

Impression:

1) Interval increase in metastatic disease in the right and left lower lung zones.
2) No change in the large left inguinal hernia.
3) No change in the metastatic disease to the liver or the retroperitoneal lymph nodes.

Yeah, I kinda know what some of this means, but mostly I have no clue.


----------



## pidge70

According to Siteman, there are 3 different types of Medicaid. They only take one of them. If he is not approved for that one, I have no clue what to do.


----------



## Ikaika

pidge70 said:


> According to Siteman, there are 3 different types of Medicaid. They only take one of them. If he is not approved for that one, I have no clue what to do.



Part of this is a state management issue. Medicaid is a bit like medicare in how they split it into A & B forms but includes CHP and long term care. Contact the state medicaid office to have them explain.


----------



## Ikaika

pidge70 said:


> AS well as can be expected. This whole thing has made me have even less patience it seems. I'm scared, which makes me feel weak, which ultimately pisses me off.
> 
> 
> 
> The hospice paperwork diagnosis says that he has "other malignant neoplasm without specification of site." Not sure what that means.
> 
> 
> 
> I have a copy of a CT report that says:Clinical indication:Lung cancer
> 
> 
> 
> Findings:There is interval increase in size and number of metastatic nodules in the lung base bilaterally. Imaging of the upper abdomen shows no significant change in the patient's known metastatic focus in the inferior aspect the right lobe of the liver. The extensive periaortic and aortocaval adenopathy is unchanged. Liver, spleen, and kidneys are grossly unremarkable. There is a cyst from the medial aspect of the right kidney. No perinephric fluid seen. No local bowel pathology seen. Imaging through the lower abdomen and pelvis shows a large left inguinal hernia unchanged. No bowel obstruction is noted.
> 
> 
> 
> Impression:
> 
> 
> 
> 1) Interval increase in metastatic disease in the right and left lower lung zones.
> 
> 2) No change in the large left inguinal hernia.
> 
> 3) No change in the metastatic disease to the liver or the retroperitoneal lymph nodes.
> 
> 
> 
> Yeah, I kinda know what some of this means, but mostly I have no clue.



I understand all of it... It would be nice if someone could break it down for you. I will try to write an interpretation offline then upload it.


----------



## pidge70

Ikaika said:


> I understand all of it... It would be nice if someone could break it down for you. I will try to write an interpretation offline then upload it.


Thank you.
_Posted via Mobile Device_


----------



## CantePe

It isn't small pox virus they use, it is the natural measles virus genetically altered to attack cancer cells. Not to be mistaken for the vaccine strain of measles though.

There have been extensive studies done; however, the studies are with bone marrow cancer patient where all other treatments have proven ineffective.


----------



## pidge70

I picked up some bedding for his hospital bed. Mom has him sleeping on a pink sheet. I just can't let that continue so I got him blue ones....lol

I also picked up a case of Ensure for him. He is not eating. Got him some more apple juice as well. He's got to start eating.


----------



## CantePe

Try, if he can stomach the taste, coconut water. It is packed with protein for needed weight maintenance and is easier on the stomach.


----------



## karole

My dad also had lung cancer Pidge. But he had a whole host of other medical problems too, including congestive heart failure and COPD. Yes, my dad was a smoker. Like your brother, my dad did not eat very much, and then the last month nothing at all. Sometimes he would ask for something to eat and no matter when or what it was, we'd try to get it or cook it if he thought he could eat it. Most times, he'd take one bite and then say, he couldn't eat it. Hospice did try giving him something to stimulate his appetite, but it didn't work. The hospice nurse and my dad's doctor told us not to try to force him to eat, so we didn't. My dad went almost a month on little more than sips of water and an occasional popcicle. 

I hope that you and your brother are pleased with the hospice care your brother is receiving. My heart breaks for you and your family. I know how hard this is to go through. You want to do something to take away their suffering, it makes you feel so helpless. But Pidge, you sound like a wonderful sister and you are doing everything in your power to help your brother. I said it before, but I want to stress it again, please remember to take care of yourself. My thoughts and well wishes are with you and your family.


----------



## Pluto2

Try and talk to him about his appetite. Is he nauseous from meds? Is it a taste aversion? Smell? Can you remember his favorite childhood foods? Would you consider medical marijuana?


----------



## Ikaika

pidge70 said:


> AS well as can be expected. This whole thing has made me have even less patience it seems. I'm scared, which makes me feel weak, which ultimately pisses me off.
> 
> 
> 
> The hospice paperwork diagnosis says that he has "other malignant neoplasm without specification of site." Not sure what that means.
> 
> 
> 
> I have a copy of a CT report that says:Clinical indication:Lung cancer
> 
> 
> 
> Findings:There is interval increase in size and number of metastatic nodules in the lung base bilaterally. Imaging of the upper abdomen shows no significant change in the patient's known metastatic focus in the inferior aspect the right lobe of the liver. The extensive periaortic and aortocaval adenopathy is unchanged. Liver, spleen, and kidneys are grossly unremarkable. There is a cyst from the medial aspect of the right kidney. No perinephric fluid seen. No local bowel pathology seen. Imaging through the lower abdomen and pelvis shows a large left inguinal hernia unchanged. No bowel obstruction is noted.
> 
> 
> 
> Impression:
> 
> 
> 
> 1) Interval increase in metastatic disease in the right and left lower lung zones.
> 
> 2) No change in the large left inguinal hernia.
> 
> 3) No change in the metastatic disease to the liver or the retroperitoneal lymph nodes.
> 
> 
> 
> Yeah, I kinda know what some of this means, but mostly I have no clue.



So given the reports they are citing:

Bilateral lung nodules - indicates this is a metastatic (NSCLC) cancer. They are likely basing this on size and edge characteristics, not indicated in the report. If they had done a transthoracic needle aspiration, it would provide a definitive diagnosis, but much of what can be seen on the CT scan is enough. 

The location of the lung nodules may imply this as a secondary site of growth. Probably why they did the abdominal scan. They are looking for primary growth tissue (neoplasm). 

The metastatic growth on the liver rarely a site for a neoplasm. This is why they looked at the colon, hunting and pecking for primary growth tissue. The assumption of spread from colon to liver to lungs. However, colon appears non-obstructive and clean. 

I believe they made their initial diagnosis based more on the aortic findings along with what they did not find. 

Most metastatic cancers spread via lymphatic system, lymph node report. But "no change" does not suggest anything about initial diagnosis. So not sure what to make of it. 

Everything listed would likely place your brother as a stage IV cancer patient. 

The kidney cyst is likely unrelated. 

I am not suggesting you should just lose hope, but you need to be realistic about his situation. 

http://www.cancercenter.com/lung-cancer/stages/tab/non-small-cell-lung-cancer-stage-4/

Malama pono


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## pidge70

So, everything is finally together...sorta. My brother has an appointment at the Siteman Center on the 15th of this month. Unfortunately I had told my mother that I cannot do Mondays or Wednesdays as I have school on those days. I told her this and she got all pissy with me. She was like, "well I guess I will try and find another way to get him there." I am so damn tired of my family trying to make me feel guilty. Whenever sh!t hits the fan, who do they freaking call first? Me. The stupid slvt that never should have been born, that doesn't have any real friends, etc, etc. God, my mother pisses me off hard.


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## Ikaika

pidge70 said:


> So, everything is finally together...sorta. My brother has an appointment at the Siteman Center on the 15th of this month. Unfortunately I had told my mother that I cannot do Mondays or Wednesdays as I have school on those days. I told her this and she got all pissy with me. She was like, "well I guess I will try and find another way to get him there." I am so damn tired of my family trying to make me feel guilty. Whenever sh!t hits the fan, who do they freaking call first? Me. The stupid slvt that never should have been born, that doesn't have any real friends, etc, etc. God, my mother pisses me off hard.


Sorry to hear about the challenges but awesome that you got an appointment for him. I really am hoping for the best. I hope that whatever I may have indicated early is totally wrong. I would rather be wrong and your brother have a chance. 

Malama Pono


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## Coffee Amore

Your brother knows you're a good sister, pidge. And you are. Ignore the negativity from your mother. She needs someone to lash out at. 

Still hoping for a good outcome for your brother.


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## Blossom Leigh

I feel that pain Pidge... From one outcast to another. You rock.


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## pidge70

Just a matter of time now. My oldest brought him to the hospital here. The doctor showed me his scans. His lungs are 80% cancer. He has fluid all in his abdomen, spleen, liver, and even in his hernia. I had to tell my mom this on the phone. God, she screamed. I can't do this. Why the Hell is this happening? The doctor said not to expect any miracles from Siteman. They are doping him up with narcotics. He is in so much pain. You can't even touch him without making him scream. I wish I could take this from him.


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## Ikaika

pidge70 said:


> Just a matter of time now. My oldest brought him to the hospital here. The doctor showed me his scans. His lungs are 80% cancer. He has fluid all in his abdomen, spleen, liver, and even in his hernia. I had to tell my mom this on the phone. God, she screamed. I can't do this. Why the Hell is this happening? The doctor said not to expect any miracles from Siteman. They are doping him up with narcotics. He is in so much pain. You can't even touch him without making him scream. I wish I could take this from him.



They can relieve some of his pain (pressure from the ascites - abdominal fluid). 

I'm so sorry to hear.


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## pidge70

The doctor wanted to admit him. He wanted to go home. Signed himself out AMA. The doctor said Siteman may be able to get him in a study, but he would feel worse than he does now. Doc also said they would have better pain meds geared toward cancer. I'm going to have to talk to him and see what he wants. He hasn't eaten in 6 days according to my mom. He's also dehydrated. I hate this for him. I've cried so much today. I'm so angry.
_Posted via Mobile Device_


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## Coffee Amore

I'm sorry this has happened, pidge. Easing his pain is a priority so I hope that happens soon. Loss of appetite seems common. Is he getting IV fluids?


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## Blossom Leigh

Deeply sorry... Glad he's got his big sis by his side.


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## Ikaika

pidge70 said:


> The doctor wanted to admit him. He wanted to go home. Signed himself out AMA. The doctor said Siteman may be able to get him in a study, but he would feel worse than he does now. Doc also said they would have better pain meds geared toward cancer. I'm going to have to talk to him and see what he wants. He hasn't eaten in 6 days according to my mom. He's also dehydrated. I hate this for him. I've cried so much today. I'm so angry.
> _Posted via Mobile Device_


Getting him IV fluids would help but this also has the effect of increasing his ascites. Get as much information on the study as you can and ask them (even though they may not be able to tell you much based on these studies) as to some percentage or possible success. 

Pain management needs to be priority one. 

Malama pono


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## pidge70

This is my brother and I.


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## pidge70

This was taken last December. I can't bear to take a picture of him now. He looks so much worse.


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## Pluto2

Being there with him, that is what matters.
Sending hugs.


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## pidge70

Pluto2 said:


> Being there with him, that is what matters.
> Sending hugs.


Thank you.


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## pidge70

The ER doctor said he had maybe 3 months. He might have longer because he is younger, but obviously they cannot say for sure. I can't deal with school right now. I just can't. My 22yr old lost it when we left the hospital. She walked ahead of all of us and when she got in her car she broke down. She was punching the steering wheel and just wailing. 

I'm also worried about my 15yr old. She just got out of the hospital for her cutting and suicidal ideation. I am going to have to keep a close eye on her. 

My youngest brother came up to me yesterday and told me he was proud of me for being so strong. He said I am the strongest in the family. I told him I am most definitely not strong. 

Lil Joe is having more issues at school. They are going to make him ride the "special" bus now. He has so many behavioral issues.

I still have no job. Not sure what to do about that as I would not be able to focus, plus I need to be available for my brother. 

Joe and I are done. We just aren't meant to be together. He sees things one way and I see them the exact opposite. Since we are not in fact married, I will not get shyt. Honestly, I don't really care at this point. 

So there is my pity party. Once upon a time I would have tried to kill myself over all that, just to make the pain of it all stop. Honestly the major thing keeping me from not doing it, it isn't the kids, it's because I know I will most likely fail again. I don't have insurance so, I cannot afford another vacation in the psych ward. 

I just want this all to stop.


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## happy as a clam

Pidge, I'm so sorry for the load on your shoulders...

{{{{hug}}}}


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## karole

So extremely sorry Pidge. I wish there were words.......... When it rains is pours it always seems................just know there are people that are thinking and praying for you and your entire family.


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## Pluto2

For what its worth, I think your son is spot on-you are the strongest in the family. Give him an extra hug from Pluto


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## Miss Independent

I'm sorry Pidge. My heart breaks for you and your family


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## Ikaika

He kehau ho`oma`ema`e ke aloha.

http://youtu.be/mGe302ADCJY

http://youtu.be/InfbrAUemK0


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## Openminded

I'm very sorry, Pidge. 


PS
Your brother's right. You've very strong. If you weren't, with all you have to deal with you'd be crumpled up in the corner 24/7. But you're not. You're still in there fighting every day. I'll keep all of you in my prayers.


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## pidge70

Siteman can't help him. They said he couldn't be in any studies because he is so weak. He has to be able to walk on his own and he can't. They also can't give him any stronger pain meds because it could kill him. He is still not eating, he can't talk, and he keeps wetting himself. Mom said he drinks so fast that the water comes out his nose. He is also now hallucinating and is not aware of where he is sometimes. Three months is what he has been given. His birthday is in around that time. July 21st.


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## Ikaika

pidge70 said:


> Siteman can't help him. They said he couldn't be in any studies because he is so weak. He has to be able to walk on his own and he can't. They also can't give him any stronger pain meds because it could kill him. He is still not eating, he can't talk, and he keeps wetting himself. Mom said he drinks so fast that the water comes out his nose. He is also now hallucinating and is not aware of where he is sometimes. Three months is what he has been given. His birthday is in around that time. July 21st.



I'm so sorry to hear. 

Sending you and your family aloha.


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## pidge70

He fell yesterday and they had to call an ambulance. Mom said he obviously still understands, and he is listening to what people say. He apparently heard them at Siteman say that they can't put him in a study unless he can walk. Mom said he keeps trying to get up and walk on his own. He still wants to fight this. 

He had to be catheterized as he has no control over his bladder. I hate this so much. I'm not even bothering to tell Joe anymore about what is going on. He doesn't give a shyt anyway. It's not like it is his brother. Funny, when his brother died, I was there for him. I was there for him through every death in his family. The only one I missed was his paternal grandmother's and that is only because I had just had a craniotomy. Pisses me off to no end. 

My mom has also already asked people to be pallbearers. I find it interesting that Joe wasn't considered.


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## Pluto2

Ha! Mamma knows. Some people are there for you in this world and others just aren't. When my MIL died the kids asked me what her last wishes were. I thought it odd that they didn't know and she was there mother!

It might not feel like it, but you are not alone in this.


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## Blossom Leigh

So sorry Pidge... sending you strength in prayers.


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## karole

So very sorry Pidge. I understand and sympathize with what you are going through. I continue to pray for you and your family.


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## Ikaika

So sorry to hear. And if you need to vent, do so, we will listen. Aloha 

Dedicated to you and your brother:

http://youtu.be/FZqMnZMqTkU


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## phillybeffandswiss

pidge70 said:


> My youngest brother came up to me yesterday and told me he was proud of me for being so strong. He said I am the strongest in the family. I told him I am most definitely not strong.


I've read everything you've done. You can pretend you aren't strong, but as someone who was also in school, looking for full time work, being criticized by absent family members, raising teens and taking care of someone I knew was dying YOU are stronger than you will ever understand or believe.

I believe you are very strong. 

P.S. Sorry this is late, it is hard for me to read your thread.


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## pidge70

I seriously hate him right now. (Not my brother)
_Posted via Mobile Device_


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## feeling lost

I can only cry!

What can I say to you? I cannot even begin to imagine how I would feel.

I can only pray for you.


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## pidge70

Mom called at 6am. Hospice told her she should get the family together. His oxygen is at 80%. His eyes are partially rolled into his head. I had to throw up I got so upset looking at him. I want to run away.
_Posted via Mobile Device_


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## SecondTime'Round

pidge70 said:


> Mom called at 6am. Hospice told her she should get the family together. His oxygen is at 80%. His eyes are partially rolled into his head. I had to throw up I got so upset looking at him. I want to run away.
> _Posted via Mobile Device_


{{Hugs}}


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## pidge70

He hasn't blinked not once.
_Posted via Mobile Device_


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## Pluto2

Pidge, go to him. If you can, hold his hand and tell him you are there. Tell his his mom is there. Tell him it is ok and that you love him.
We're here for you.


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## Ikaika

pidge70 said:


> Mom called at 6am. Hospice told her she should get the family together. His oxygen is at 80%. His eyes are partially rolled into his head. I had to throw up I got so upset looking at him. I want to run away.
> _Posted via Mobile Device_





pidge70 said:


> He hasn't blinked not once.
> _Posted via Mobile Device_


I know it is hard, but now is when your brother needs you most. Don't let him travel alone on his final journey. I send you my deepest Aloha. 

Malama pono


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## Ikaika

Be with family right now, if you need to vent more and talk we will be here when you are ready.


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## pidge70

I can't do this.
_Posted via Mobile Device_


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## pidge70

I don't think he is even here anymore. Mom took this. 
_Posted via Mobile Device_


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## SecondTime'Round

pidge70 said:


> I can't do this.
> _Posted via Mobile Device_


Yes you can <3. I just prayed for you. Hang in there.....


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## SecondTime'Round

That photo is heartbreaking. Cancer is just such a thief  .


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## arbitrator

Pidge: You, Joe, your ill brother and your entire family remain in my ceaseless prayers and I'm adding you all to our church prayer list!

Be strong, Sweetheart! Whether you are acutely aware of it or not, God's presence is truly there with you all now, even as we speak!


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## joe kidd

It not that I don't care. I do. I really like her brother. I just don't know what to say or do, I don't handle this stuff very well.


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## skype

joe kidd said:


> It not that I don't care. I do. I really like her brother. I just don't know what to say or do, I don't handle this stuff very well.


I hate doctors, hospitals, and illness, too. You don't have to say a word. Just be there. Hold Pidge's hand. Walk through this together.


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## Ikaika

joe kidd said:


> It not that I don't care. I do. I really like her brother. I just don't know what to say or do, I don't handle this stuff very well.



Just be there to hold his hand. At this point it is about him.


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## Ikaika

pidge70 said:


> I can't do this.
> _Posted via Mobile Device_



Just being present is what is important. Help him with his journey


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## Ikaika

Whether you think he is present or not, just talk to him. Tell him it is ok to let go. A man never really dies as long as he remains in your memory.


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## pidge70

I've been telling him I love him. I told him it was okay to let go. He was moving some a few hours ago. Nothing now. He doesn't move when you tickle his feet, his eyes don't blink when you move your hand in front of them. Youngest brother is losing it.
_Posted via Mobile Device_


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## Ikaika

pidge70 said:


> I've been telling him I love him. I told him it was okay to let go. He was moving some a few hours ago. Nothing now. He doesn't move when you tickle his feet, his eyes don't blink when you move your hand in front of them. Youngest brother is losing it.
> _Posted via Mobile Device_



Youngest brother needs to hold his hand. It is good that you are there for him.


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## joe kidd

Pidge's brother has left us.


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## Ikaika

joe kidd said:


> Pidge's brother has left us.



Aloha ʻOe


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## Coffee Amore

I'm so very sorry, Pidge for the loss of your brother. 

Wishing you and your loved ones peace and healing in the weeks to come.


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## pidge70

Thank you.
_Posted via Mobile Device_


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## arbitrator

Please remember him for all of the courage that he showed us all while enduring his terrible illness. Rest assured that while he is now in God's presence, that his spirit will always remain with you!


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## SecondTime'Round

So sorry for your loss .


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## soccermom2three

Pigde, I'm so sorry for your loss.


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## pidge70

I shouldn't have went. I close my eyes and I see him.....dying. I hear his voice in my head, from when he was well. He's going to be so cold. Mom couldn't get his mouth shut after he died. I can't deal, I can't stop crying.
_Posted via Mobile Device_


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## Ikaika

pidge70 said:


> I shouldn't have went. I close my eyes and I see him.....dying. I hear his voice in my head, from when he was well. He's going to be so cold. *Mom couldn't get his mouth shut after he died*. I can't deal, I can't stop crying.
> _Posted via Mobile Device_


That was my fault, I should have told you to tie a cloth around the bottom of his jaw and tie it over the top of his head. It is rigor that has set in, the muscles will eventually relax. 

I really feel for you, I truly do. I know I can't really say anything to remove the pain. I just want you to know it was important for him for you to be there for him on his final journey. I send you the deepest Aloha during this time.


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## karole

So very sorry for your loss Pidge, so very sorry.


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## pidge70

Thank you. I have no clue as to how he will be buried. How do they do that when people have no money? No matter what, I have to make sure he has a headstone.
_Posted via Mobile Device_


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## Ikaika

pidge70 said:


> Thank you. I have no clue as to how he will be buried. How do they do that when people have no money? No matter what, I have to make sure he has a headstone.
> _Posted via Mobile Device_



Contact the county department of Health, most counties have a fund for these situations. Sometimes you can have hospice fill out the paper work. Contact the county corner, explain the situation. 

One more thing you can do, set up a personal fund raising campaign through PayPal.


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## Pluto2

You are so brave, and have such a gentle giving heart. So very very sorry for you loss.


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## CantePe

Big big hugs and you are in my thoughts. Death is not an easy transition to face. Just remember you did everything you could do, you were there for him. That's all that matters to him, that you were all there, that he didn't have to do it alone and he felt your love and compassion for him.

He would want you to keep going forward, that is how we honour and remember our passed loved ones: keep moving forward, even if it is in baby steps.

One thing, the biggest piece of advice I can give you (both personally and professionally). DO NOT let anyone dictate to you how long or how you grieve. Everyone grieves differently and there is no wrong or right way to grieve. The process of grieving is as individual and unique as we are as people. You dictate how and how long. Do not let anyone tell you any different and take your time and not a second less than that.

You have a right to wail and scream if that's what you need, a right to be quiet and reflective if that is what you need, or anything in between and outside of that. The grieving process is yours alone to dictate.

I have a deep respect and appreciation for you and for how you shared this most intimate and emotional part of your life with all of us. Thank you for being open to us and thank you for being who you are.


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## pidge70

Ikaika said:


> Contact the county department of Health, most counties have a fund for these situations. Sometimes you can have hospice fill out the paper work. Contact the county corner, explain the situation.
> 
> One more thing you can do, set up a personal fund raising campaign through PayPal.


I gave my mom the number to the Illinois Dept of Human Services. They have a funeral and burial unit. Won't pay for all of it, or anywhere close really, but anything helps.

We have to somehow come up with $2000 by Monday or Tuesday or they will cremate him. I know that may seem like nothing to some people, but I just don't want him burned. Plus, Chris(youngest brother) will freak. 

So, how do I even go about setting up a donation page? I have no clue. 

God, I have an Algebra test tomorrow, our youngest has counseling. I have quite a bit of homework due tonight. This is homework that was originally due Friday and I already asked for an extension. I want to just lose it, but I can't. Gotta be strong and crap.

Dad called me this morning, asked me whether or not his casket should be open or closed. I am torn. I want to see him to kiss him goodbye, but he doesn't look anything like Paul anymore.


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## CantePe

http://www.giveforward.com/p/help-with-funeral-expenses


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## Pluto2

Is there any life insurance you could tap into to cover the funeral expenses?


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## CantePe

Take grievance leave from school too...take a break. Let the admissions and dean know they are there to help you, use that help. They may also know of more resources for your family to help with the funeral expenses.


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## pidge70

CantePe said:


> Take grievance leave from school too...take a break. Let the admissions and dean know they are there to help you, use that help. They may also know of more resources for your family to help with the funeral expenses.


I already talked to the school. I guess that is not a thing here. I only have 3 weeks left. If I leave now, I would lose my financial aid and would have to go through an appeals process to get it back.


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## pidge70

Pluto2 said:


> Is there any life insurance you could tap into to cover the funeral expenses?


I am the only one with a life insurance policy. I don't think there is maybe more than a few hundred dollars I could borrow against it.


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## Pluto2

No, I was hoping he had some. Here's a link to GoFund for memorials. You have a lot of TAM friends, you know.

Raise money for funeral costs & expenses with a memorial donation website.


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## pidge70

Pluto2 said:


> No, I was hoping he had some. Here's a link to GoFund for memorials. You have a lot of TAM friends, you know.
> 
> Raise money for funeral costs & expenses with a memorial donation website.


Paul was never able to work. While he was never diagnosed with anything (mentally), there was no way he was going to be able to hold a job. 

I am in the process of setting up the Gofundme site now. 

Thank you.


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## pidge70

Can I post a link for this here? Maybe I should start a separate thread? Not a lot of people responded to this thread.


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## pidge70

Here is the gofundme link. A proper burial for Paul by Denise Rhodes - GoFundMe


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## skype

Pidge, put the link in the General Relationship forum. More people look at that one.


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## CantePe

I also shared it on Facebook too. I have very large connections in both the medical, palliative and publishing circles. Every little bit helps. I'm sorry the school doesn't have better resources for you. Let me know if you need more help. I'll do my best to help where I can.


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## pidge70

skype said:


> Pidge, put the link in the General Relationship forum. More people look at that one.


I already put it in Social. I'll ask a mod to move it when I get on my comp.
_Posted via Mobile Device_


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## pidge70

CantePe said:


> I also shared it on Facebook too. I have very large connections in both the medical, palliative and publishing circles. Every little bit helps. I'm sorry the school doesn't have better resources for you. Let me know if you need more help. I'll do my best to help where I can.


Thank you so much Cante!
_Posted via Mobile Device_


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## phillybeffandswiss

Pidge, put it in your signature as well with a little note. That way people will see it when they read other threads.
Posted to Facebook as well.


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## pidge70

phillybeffandswiss said:


> Pidge, put it in your signature as well with a little note. That way people will see it when they read other threads as well.


Good idea! I'll also take care of that on my comp.
_Posted via Mobile Device_


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## pidge70

Thank you so much for all the kind words and donations. It is so very much appreciated!


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## pidge70

$730 now! Thank you everyone!


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## CantePe

1045 now...good job folks, love seeing how a group of people come together compassionately! Gives me hope for humanity.


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## pidge70

CantePe said:


> 1045 now...good job folks, love seeing how a group of people come together compassionately! Gives me hope for humanity.


$1115 now! Thank you all so much!


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## joe kidd

All of you have been so great. It's goes against Pidge's nature to ask for help . You have all restored her faith in the world . 
Thank you very much.


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## arbitrator

joe kidd said:


> All of you have been so great. It's goes against Pidge's nature to ask for help . You have all restored her faith in the world .
> Thank you very much.


Joe: You know the mark of a good woman ~ it's no secret that Pidge would do the very same thing for any of us, if the shoe were invariably on the other foot!


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## pidge70

Thank you arb, you're a good guy!


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## pidge70

$1215 now.....thank you all again!


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## Anon Pink

joe kidd said:


> It not that I don't care. I do. I really like her brother. I just don't know what to say or do, I don't handle this stuff very well.


Joe, I know you feel totally out of your element and have no idea what to do and the greatest fear is saying something to make it worse, so you think it's best to shut up and stay out of the way.

Well dude that's not best at all.

Hold her hand every damn chance you get. Stroke her arm and look I her eyes and speak directly to her. Remind her you're by her side and you're there to help. Stroke her back, be vigilant about what the kids need, anticipate and help with meals and laundry and homework. You may suck at doing all of that but doing it badly is much better than not doing it at all.

Pidge, I'm so so sorry. Times like this bring out the worst in some people, but in others it brings out the best. Give to joe whatever you need to and don't worry how it gets done just let him do it.

Thinking of you as the funeral takes place.


----------

