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Update from Judy plus she wants to know if anyone has had a similar experieance

Posts: 191
Joined: Nov 2011

Judy posted this on FB today. "Good news is that cancer was not found in fluid. Don is scheduled to go for dialysis at noon today. They had to stop the ng feeding because Don vomited all night and all this morning. They put him back on suctioning to get the junk out out. The md doctor said they are going to do another xray to check for any blockage and possibly another barium video swallow with follow through. Don remains a mystery to them and they are not ruling out cancer recurrence. They have seen case/s where nothing shows up until farther along. All I know is that today I feel worn out and sure wish they could find out what us causing this. They said the kidney failure gas happened as a result of whatever this is but the numbers are improving on the creatinine. Hopefully he can do the entire dialysis today and continue to improve. Has anyone else experienced anything like this?"

Posts: 25
Joined: Dec 2011

I can not answer this question but I am thinking of you, Don and Caitlin always. I pray for resolve to these issues and I admire your strength. Popi is praying for your family and would love to come meet you and Don. Please let me know if there is anything I can do, I am 1 hour away. Don is a HERO and tell him Team Popi is cheering him on... Love you guys-Lynn

JReed's picture
Posts: 463
Joined: Nov 2011

Thank you so much. I was without the iPad today and I don't know how to copy and paste on the iPhone.

Doctor came in tonight and said the plan for tomorrow is to tap and drain fluid and send that off to pathology. Until the kidneys greatly improve they are unable to another ct scan. They are also going to another dialysis if the numbers are favorable for that. It really wiped him out today. They are at a loss as to the cause of this except they have said their worst fear is a recurrence but so far they have been unable to find it. The increasing soft tissue was not there in February but did show up in June (which I did not know until tonight) and it has also increased since June as evidenced in the MRI they did last week or over the weekend. They did say it could either be scar tissue or the cancer. They cannot get to it to biopsy.

This is tiring and frustrating so I sure hope something gives here pretty soon and can shed some light. They said if it is a recurrence he could not tolerate chemo in his condition. Their immediate goals are to get the fluid off and try to get him eating or at least able to tolerate the ng feeding. They do not want to do the TPN feeding unless they absolutely have to because that could add stress to the kidneys and he sure doesn't need that.

Don told me tonight that he doesn't want anything to happen here at the hospital. He wants to go home if he isn't going to get better. I would hope the right thing to do will become apparent very soon. I don't want to leave without answers but I want him to come home also. We built that home together from the ground up. I dug the footings and me and my uncle showed Don how to build the garage. We had our daughter there. If there is some good answer to be had I pray that God will show us and the doctors soon.

Hugs and FEC,

Posts: 377
Joined: Oct 2010

My dearest Judy

You both have been thru so much with so few answers.This poor man's strength must be at his limit and your caregiver skills are at a breaking point. I certainly know how you feel.

Thank God they are going to drain Don's fluid today. He can at least be a bit more comfortable I would hope.

I hope it is not, but if it is a recurrance then I know Don and you would want to be home.Hospice came to our house and made Vince more comfortable.

My heart is breaking for you and your family. If there were some magic words that I could say to make this all go away I would. But I know I can't.

I am so very sorry.


No one deserves to go thru this.

LOVE to you and Don


rose20's picture
Posts: 277
Joined: Jan 2011

Praying that you will get that answer as to what to do.

Amjosmom's picture
Posts: 231
Joined: Jun 2012

I have been praying for strength for you both. I'm really at a loss for words, but your courage as a wife and caregiver have truly been an inspiration to me. Hang in there, Don. Hang in there.


Posts: 136
Joined: Jul 2012

We are praying for you. I'm sure each hour seems like days as you look for answers. My kids brought a favorite thing from home, to the hospital room while we waited for updates. It made my husband smile.

sandy1943's picture
Posts: 883
Joined: Jun 2010


One of the worst things about Ec is all the testing, waiting and not knowing what is going on. It is so exausting and this has been going on with you two, for a long time. Praying for that miraculous healing.

You and Don are in my thoughts and prayers,

TerryV's picture
Posts: 916
Joined: Jul 2011

I've got nothing. I'm speechless at all that has been asked of you both. Know that you are in my thoughts and prayers constantly.

Call or txt if you like. You know I keep strange hours and would love to be here for you if it would help.

FEC! Lean us, Judy. Strength to you both.


Posts: 28
Joined: Feb 2012

Oh I am so sorry to hear that he has been having so many troubles. I will pray that the Dr's can find out what is going on, and also pray for strength for you both. This is a tough one and I am not sure what to say. Just know that we are all pulling for you guys. My husband was sent home on Hospice that is why I haven't written in a while. It is so hard for me to keep up with everything, and my daughter. God bless you guys

Posts: 191
Joined: Nov 2011

Oh Judy, you are more than welcome. I wish there was more that I could do for you but am happy I can do this little thing.

I hope you get some good news soon. I can't even begin to imagine how frustrating it must be to have been in hospital all this time (what is it - 4 weeks now?) and not have answers yet. I think my head would explode.

Did they say why you were not told about the increasing soft tissue back in June? Our doctors usually go over the reports with us and tell s anything like that, then after a few days the reports are available for us to read online. Being me, I always read them though I don't think Bill does. It just seems a little strange they would not have told you.

Don and you must both be exhausted. I do hope you get to go home soon.

You are in my thoughts constantly.
Hugs and FEC
Freida xx

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