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Wednesday update.. very grim..


MsC1210

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The news is not good. After having a fairly decent day on Tuesday, Mom got to the hospital yesterday and found Jerry very uncomfortable, refusing to, or unable to eat. The IV had been removed for some reason although nobody seemed to know why.

ANYWAY.. before Mom got there, they had done a full body scan. She did not know if it was a CT scan or PET, but the results were horrific. The cancer has spread now, definitely to the left lung, the adrenal glands and the kidneys. He has a large build up of fluid around the heart which has to be drained. They want to do that and leave a drain in place.

The doctor wants to biopsy the adrenal gland but.. now this absolutely baffles me. They want to send him from the VA Hospital in Albany, NY over to Albany Medical Center to have this done. The problem is, once again, he is probably not strong enough to make the trip.

Jerry told Mom that he cannot do this. He told her he thinks she should contact Hospice and get things in order as he just wants to go home and die in peace. I am so heartbroken. My Mom is just torn apart and it is killing me watching her have to go through this. We are hoping that by some miracle Jerry will feel differently this morning and let them do something to drain the fluid from around the heart as that will surely make the breathing easier.

Right now things have, indeed, gone from bad to worse. Please, please keep the thoughts and prayers coming. I am just so scared and so heartbroken... I HATE CANCER, I HATE IT SO MUCH!!!!!

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Oh Chris, I cannot believe what is going on. Is the reason they are sending him to another hospital because they have no-one qualified to do it there? I can't think of any other reason why they would send an ill patient on a long trek to get a biopsy done. This is absolutely ridiculous. If I were your mom they wouldn't be moving him anywhere until they gave me an absolute solid reason as to why they need to. I would also stipulate that if he has to be transported that it be via ambulance and with a qualified nurse to handle any situations that may come up. I don't know if that is possible to have a nurse along; however, it sure doesn't hurt to ask. To me the ambulance would be non-negotiable.

I hope that in the light of day Jerry feels better about things. I can imagine that not only is he feeling horrible, he must be emotionally drained with the way this entire thing has been dealt with. From what I understand he would feel so much better getting the fluid drained and that might change his entire outlook if he wasn't having such difficulty breathing, etc.

My heart is absolutely breaking for what you have all endured. I will continue to keep you all in my prayers and hope that the new day brings hope to you all. Tell Jerry I am rooting for him and if need be we can come down and start kickin' some VA butt!

Linda

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(((Chris))),

I am so sorry to read this news this morning. Poor Jerry, it just isn't right for anyone to be put through what he has had to go through. I would wonder what they hope to accomplish with the biopsy of the adrenal gland. Will it change the staging or treatment in any way? I ask this because Mike had what was assumed to be a met on his adrenal gland , but it was never biopsied because it would not have changed anything one way or another. I know every case is different and I'm certainly not knowledgeable enough to question their wisdom.. I'm just thinking of poor Jerry and what he has had to endure already. I want you to know that my prayers continue for Jerry and your family.

Hugs,

Sue

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Christine. I am so saddened to hear that this journey is not getting easier for all involved in this nightmare. I am praying too for a better day today, and that there is something that can done to make him more comfortable and in better spirits. Continued hugs, prayers and positive thoughts.

Sandra

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Christine:

I have to admit that if I were in Jerry's shoes in terms of this latest news, I, too, would undoubtedly be discussing hospice.

On the other hand, the drain, feeding tubes and an IV (unlike unnecessary biopsies) all fall into the category of "comfort care" and, again, if I were in Jerry's shoes, I would want all of that done before being discharged home to "hospice."

I know that family members hate the idea of giving up hope and tend (more than we patients) to want to try everything possible, but at some point, for our sake, letting us go as comfortably as possible is the most loving thing our family can do for us.

Sorry if this comes out sounding negative, but he sounds so miserable, I can't help but feel empathetic to his situation. :(

Carole

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Christine, How heartbreaking Jerry's situation is. I'd be focusing on the drainage, like other people have said, and whatever else will make him feel more comfortable. I do believe that collective positive energy can have a powerful impact so we're all here sending it your way.

Judy in Key West

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Thank you all so much for the posts today. I spoke to Mom earlier and Jerry was down having radiation this morning. I don't know what they were doing exactly but apparently he opted to allow them to do this.

Carole and Ned, thank you for the patient perspective. I guess I have not been clear and for that I do apologize. Jerry has been making ALL of his own choices all along in regard to treatments, tests, etc. We have not made any effort at all as family members, to influence him. He is of sound mind and he knows what he wants and what he needs to do. We would never press the issue of making him have any kind of test or treatment that he did not wish to have. He does discuss things with my Mom of course but other than that, this is something that as long as he is mentally able to make his own choices we would never, ever step in and try to change. I do appreciate your input and I really admire both of you for your courage and strength. Thank you so much...

Chris

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(((Chris)))

I am so terribly sorry. I was so shocked to read this post after yesterdays chat with you when he was sitting up eating turkey and potatoes and gravy. How quickly things can change with this horrid disease!!

I think it is wise on you and your moms part that you are only giving him all the information so that he can make an informed decision for himself based on facts and not based on the fact that today he is feeling wretched.

You know you have my prayers and thoughts. I am truly hoping that things turn around for him very soon.

You know where to find me if you need to talk.

Hugs - Patti B.

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