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from JREED in txt - UPDATED 08/11

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

I received this from Judy via phone text this AM....

Just wanted to let you know that our nightmare has started. They are 99% sure this is a recurrence and Don is going downhill very quickly. PET scan will tell the story. His left arm is very swollen this morning. He has not eaten in 4 days. They are going to put in feeding tube today. I am numb.

Requesting positive mojo for a great report. Love to all,

Judy

ECson
Posts: 26
Joined: Nov 2011

Not cool. Thoughts go out to them.

ryckej1's picture
ryckej1
Posts: 29
Joined: Jun 2012

Could not agreee more.

JanBred
Posts: 42
Joined: Jul 2012

My thoughts and prayers to all. Stay strong.

paul61's picture
paul61
Posts: 1107
Joined: Apr 2010

Judy,

I am so very sorry to hear this news. I was so hoping they would find something simple and easily treatable. My thoughts and prayers go out to you and Don.

With Sadness,

Paul Adams,
Grand Blanc, Michigan

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

I'm so very sorry to read this post! I was suspecting this was probably the case but was hoping and praying for better news. Thanks for letting us know Terry.
FEC! FEC!!
Rita

ShellyMac
Posts: 18
Joined: Jun 2012

So, so, sorry to hear this. Please know that I am praying for both of you and sending you all my positive mojo!!

Love, Shelly

bingbing2009
Posts: 179
Joined: Feb 2011

I also saw this news at FB, but wanted to post here, too. Thanks for sharing the news. I was wondering how Don was doing in Sturgis. What a disappointment for them. As always, I'll be keeing them in my prayers and sending positive mojo their way!

Melinda

DX October 2009: T3N1M0
November and December 2009: chemo (Cisplatin and 5 FU) and radiation
February 2010: Ivor Lewis surgery

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

I just felt like I'd been kicked in the gut when I read this on FB. Hoping the assumptions are wrong. Sending prayers and good thoughts to Judy and Don.

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

It hurts to hear this. My heart goes out to Judy and Don!

morley
Posts: 24
Joined: May 2012

Judy and Don
I am so sorry to hear this. My thoughts and prayers are with you through these anxious days.
Dave

Bermudagirl
Posts: 120
Joined: Jun 2012

OMG this saddens me so. We really do become a "family" here through such a horrific disease. I of course don't know Judy and Don, but just being on this site makes me feel like we are all connected. My thoughts and prayers go out to you both.

Sandy

mmr19
Posts: 88
Joined: Feb 2010

I was hoping to hear of the great time had in Sturgis...not bad news.
Judy and Don- good thoughts and prayers coming your way.

Marta

oriontj
Posts: 390
Joined: Jul 2009

for your and your family.

tb7
Posts: 57
Joined: Sep 2009

Hoping the best for you, saddened to hear the news . . . sending hopes and warm wishes your way!

Trisha

tmcjay's picture
tmcjay
Posts: 40
Joined: Jun 2012

Don and Judy my thoughts and prayers are with you both.

Freida
Posts: 191
Joined: Nov 2011

This is such sad news. I had been worried because of the pain Don was having but was shocked when I got Judy's text as they had been seeking answers to his pain for so long and kept being told there was no problem. Just a few short weeks ago Judy was so relieved to be told they couldn't find any problem, though Don was understandably frustrated as he knew something was up in his body. I hope they can deal with his pain very quickly. Surely in this day and age there is no reason for that. Hugs and FEC to all.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Freida,

I know Judy & Don had planned to RV to Sturgis with friends. Did they go? Was he at Sturgis with all the recent troubles?

Hope all is well with Bill.

Terry

Freida
Posts: 191
Joined: Nov 2011

Hi Terry
They went to Sturgis but he was in so much pain that he ended up in the ER twice and then flew back home and went straight to the hospital. I wish they could at least have been allowed that time and some fun before all this.

Bill just had his 3 month check up (endoscope, PET and CT this time) and all looks good so far. I did make a post about it. Was a bit ambivalent about posting with all the sad news out there right now, but decided to as I have always liked to read the good news.

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

Judy and Don, you are inmy prayers as you deal with this set back. God Bless.....

Gerry

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Received in phone text from Judy today....

The scope today showed some swelling around the duodenum which could be from radiation damage (unlikely this long after treatment and surgery) or possibly tumor pressing in. PET scan will tell more and he will have that tomorrow but won't get results until at least Monday. The pain is being contgrolled but they are working on a long acting med that won't make him sleep all the time.

*****

I've just talked with Judy. She sounds calm and matter of fact - the mode all of us caregivers get into when we are in the midst of an emergency. She's over the top worried about Don. She is hopeful about there being other possibilities for Don's pains, but she's also realistic.

My prayers, and every bit of positive mojo that I have left is directed to you & Don, Judy. We are here for you.....

Hugs & much love!

Terry

Freida
Posts: 191
Joined: Nov 2011

More frustration for Judy and Don. Don was supposed to have his PET scan today but a nurse gave him sugar water via IV even though Judy asked him to double check that it was correct. it was completely the wrong thing to do resulting in no PET scan today. She is beside herself as you can imagine. She says Don is wasting away in front of her. Just so awful.

More positive vibes needed in their direction.

Freida

mrsbotch
Posts: 377
Joined: Oct 2010

This news about Don is unbelievable. I am so very sad for both of them.
These problems with their medical facility are so terrible. Reading this I feel like I am back at Emory with Vince dealing with his drs incompetant office manager.

Judy you are in my thoughts. We as caregivers know how you feel. HELPLESS.
I am so very sorry.

Love

Barbara

Bermudagirl
Posts: 120
Joined: Jun 2012

and positive thoughts I can Judy and Don. I am so incredibly sad to hear this.

Freida
Posts: 191
Joined: Nov 2011

Judy posted this today on Don's facebook page
"They do not have for sure answers of what is going on and thanks to a major screw up yesterday the PET scan which tell them which way to proceed may not be done now until Thursday. I am at my wits end with the whole f'g medical staff and even had to fire one nurse. Don is not getting better at all this point. I am requesting that no visitors or calls at this time. Don is very weak and talking just weakens him to the point it takes his breathaway"
It is similar to what we already know except now they are saying no PET scan until thursday and it sounds like Don is not doing well at all. I am so angry for her and Don, they have done everything right and been so proactive with trying to sort out the pain he was having. It sounds like their medical staff have dropped the ball big time.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

I will be sending extra prayers Judy and Don's way today. Also, prayers for the staff that obviously needs to pull it together to get Don back on track. Thank you for the update!

~Jayme

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

If you speak with Judy, please send her my hugs. I don't want to bother her while they are going through so much.

She should already know - they are in every thought, every prayer.

Hugs & Love! & FEC

Terry
PROUD wife to Nick, age 49
lost battle to FEC, 06/19/12

ryckej1's picture
ryckej1
Posts: 29
Joined: Jun 2012

I just said a huge prayer for you.

Freida
Posts: 191
Joined: Nov 2011

Hi all. A friend of Judy and Don posted this on Don's facebook page yesterday.
"Don continues to be in considerable pain and remains very weak and nauseated. His primary Oncologist has now taken the lead with his continued care. Don will be moved to the Oncology wing as soon as a bed is available. A pick line has been put in as of this evening that will allow Don to begin receiving nourishment via IV. CT brain scan will be done tonight to rule out any cancer involvement within the brain. Full body PET scan is still scheduled for Thursday. Pain meds have been increased over the last 24 hours though the Morphine has been discontinued to see if that has been causing the increased nausea and breathing problems. Don & Judy both remain very thankful for everyone's concern and continued prayers but at this time ask that everyone refrain from visiting or calling until his condition improves."
Judy later posted that Don has at last been moved to the oncology ward which she is relieved about. I posted a message to let them know that they are receiving a ton of love and support from this site. I have not communicated directly with Judy in a couple of days as she has asked people to await updates that a close local friend will post on her behalf. I will keep updating whenever I hear any news.
Hugs to everyone.
Freida
Wife of Bill, diagnosed 11/8/2011 T3N2Mx, not a candidate for surgery due to other comorbidities, 2 months induction chemo (bi weekly carboplatin and taxol by infusion and 5FU by continuous 48 hour pump) followed by 6 weeks chemo/radiation (bi weekly carboplatin and taxol by infusion and weekly 5FU by continuous 5 day pump concurrent with radiation). 1st 3 month check up August 2012 good. Living life until 2nd 3 month check up in November.

monica_sss
Posts: 57
Joined: Dec 2011

...are both in my prayers. Judy was an encouraging poster to me, as my Mom was about a month behind Don in all of the same treatments and surgery. I pray for Don's comfort and Judy's peace of mind. Please keep us posted.

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