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Don's PET scan is clean!!

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hello everyone!!

What a roller coaster ride the past nine days have been. We went to Sturgis and ended up flying home on Wednesday August 8 through the day and early morning Thursday. Finally got to Bronson hospital on Thursday morning. Things proceeded to go downhill very quickly and there was test after another and no answers and then a nurse made a mistake and that caused the PET scan to be done on this past Thursday rather than last Sunday as planned. The scheduling availability of the mobile unit was very tight and first opening they said they had was Thurs. anyway we got the results today and As I suspected there is no cancer indicated. Yippee!!!!

There is possibly an issue one two with his heart and they are doing an echo tomorrow to check that out. Don has been having swelling as in fluid retention in both feet and one day in the left arm and hand and sometimes in the right arm and hand. The PET scan shows some fluid so they are checking that out and I am not even going to speculate on what all that could be. But his body was run down about as much as it could be and still be conscious. What a horrible terrifying week and I am glad it is over and after that I am confident we can handle whatever is going on with the heart.

Freida and Terry kept you updated with the texts I was sending them so I won't bore you with all the crappy details but trust me I seriously thought we were headed to the end of the battle.

On Monday they are going to put In a J-tube for nutrition at home. Because of the stress his body endured he is very run down and still tired but he will bounce back. He got down to 130 lbs from 154 lbs in June when all the pain started to begin with. The med onc says the pain must have been from constipation all along but I am not sure I am convinced of that. Time will tell. He is on a fentanyl patch which is controlling the pain and the constipation is no longer an issue so why would he still have pain?? His weight has gone from 130 lbs back to 154 from Saturday to today a total of five days.

They finally started TPN nutrition thru a PICC line at 10:10 pm last Monday night and within hours you could see a difference. They gave him two shots in the belly for constipation; one on Friday and another on Sunday and then scoped him on Monday. Major improvement began.

This was a case of extremely severe dehydration, constipation and lack of nutrition which has been building up by the day since that gastroenterologist did a scope on Don to see if the pain was from within and that doctor told Don he needed to learn to live with the pain and perhaps would need to take pain meds the rest of his life. I never believed that crap for one minute and made an appt for a barium swallow small bowel follow through with the surgeon for the Monday after we would have returned from Sturgis. He did not last that long. The whole month of July was screwed up as usual for us - first the primary care doc was on vacation and then the med onc was on vacation and finally the surgeon was on vacation and then we were. Very similar to the Thanksgiving andChristmas and New Years holidays we had to work around when Don was first diagnosed.

The medicine prescribed for pain was Norco and that just didn't work out for Don. Hit made him sleep and when you are sleeping you are. It eating or drinking enough which is a challenge even when you are awake so things just snowballed and everyday It got worse.

Thank you for keeping Don in your prayers and thoughts. I am happy to have a chance to report to you on the events of the past 9 days of hell. I am using our daughters IPad and I don't have the full hang of things but I am figuring it out.

Love, hugs and FEC,
Judy

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

Glad to hear things are getting better! You had us on the edge of our seats for a minute! Hoping for continued recovery and relief for Don!!

Take care!

~Jayme

Bermudagirl
Posts: 120
Joined: Jun 2012

What a roller coaster. I hope that both of you can get some rest and recover from what must have been an unbelievably stressful time.

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

I am so relieved for you and so sorry for this month of hell you two endured. I so wish you would have been able to enjoy your time in Stugis. Thanks so much for keeping us posted. Yeah, I bought an iPad and the typos are bad but this gadget is still pretty cool!
Love and FEC! (I just live that Judy, you've got many of us using your little phrase)
Steph

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Judy, Great to hear Don's PET scan is clean! Keep up the good work of taking care of and advocating for Don. You do an amazing job!

Dave

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

Judy,

You bring the BEST news! So glad to hear the PET scan turned out as you had expected. That's fabulous!

Hopefully you will both be home soon. Fingers crossed, mojo working, and prayers lifted that the rest of the tests turn out as encouraging as the PET.

All my love and lots of hugs! FEC always!

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

mmr19
Posts: 88
Joined: Feb 2010

Judy-
Glad that the whirlwind has settled down and things are starting to look up again. What a scarey turn of events you went through. It's amazing the amount of strength and determination you gain as a caregiver when things seem to get so very out of control, isn't it?

Sorry you and Don didn't get to enjoy the trip to Sturgis as planned.
You guys are in our thoughts and prayers. Good wishes for Don's continued improvement.

Marta

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

I will never take offense to someone's caring and concer and advice. The PET scan did reveal some fluid possibly in abdomen and around heart and lungs. The just did an EKG or echo gram and we are awaiting results of that. The TPN is causing his blood sugar to be too high and he has had insulin injections almost everyday.

I am greatly concerned and now I don't know what to do. Barbara sent me a message about her and Vince and now I am scared all over again. I specifically asked if the PET scan a d the CT scans did not show cancer could the fluid have cancer and we don't know it. The oncologist said. O it is not cancer.

He lost at least 25 lbs during this episode and has gained that back but I know it is fluid mostly. Is it possible that this fluid would have cancer in it???

He did have a heart attack in 1996 and has taken meds for that but this swelling of the legs feet and arms and hand looks very much like my dad did when he was having congestive heart failure. I swear if it isn't one thing it is another. Of course we are over joyed that the PET scan was clean but this heart issue and fluid have me concerned.

The doctors here are pissing me off and I push and push and then I piss them off which believe me does not bother me at all but it really bothers Don. When we get an answer here on the heart issue I will know more and they are putting in the J-tube on Monday and my intention is to get him to our surgeon at UofM ASAP.

I am going to call Barbara I think she has some things to share with me and at this point if anyone wants to call me with their ideas please do so. (269) 589-8660

Thank you and truly FEC,
Judy

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

Hi Judy:

I think your instincts are sound, and you should get him out of that hospital and to UofM ASAP, which is not only a “real” hospital but a real cancer center AND they know Don’s case. If I recall correctly, at Bronson, in addition to being insulted by an arrogant, smirking doctor you’ve been told:
1) he should get used to the pain for the rest of his life and just take the narcotics;
2) they’re 99% sure he’s had a recurrence;
3) he has NOT had a recurrence;
4) he has fibrosis in his intestines; and
5) it’s all from constipation.

Sounds to me like they have no friggin' idea what's going on and they keep guessing. Plus, it sounds like he was admitted on Friday and didn’t get any nutrition until Monday night, right? Except for a bag of sugar water that he should not have had. Yikes!

So from where I sit, the sooner you can get him out of there and to UofM to see his surgeon, the better for Don. The surgeon knows Don and knows EC, and if he needs other specialties they’re right there at hand. I don't know if he needs Dr. Luketich or not, but he sure as hell needs a real doctor in a real cancer center. Just my (always) humble opinion...lol

Good luck, and give Don hugs from all of us!

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Yes Don is at Bronson Hospital in Kalamazoo MI. The reason we came here is that the GI doc that told him to learn to live with the pain is at the other Hospital (Borgess) in Kalamazoo and Dr. Chandana the oncologist comes to this hospital. Yup they were really leaning toward a recurrence because all other tests were coming back normal. They always said they were waiting the results of the PET scan to see. Of course the PET scan was clean. Last night the onc said that the scan did indicate a possible issue with the heart and they will do a tap to check the fluid. After I spoke with Barbara today I again questioned the onc of the possibility of this fluid having cancer in it and he told me there is no way to know except to check it. Don does have a history of heart attack and I was certain that the swelling was due to some issue with the heart and it still may be that but now there is another possibility (when I asked him last night if there was any way it could be cancer I understood his answer to be no - now today he won't say that) so we will just have to wait.

Onc says when they put the J-tube in they will tap the fluid. Also the echogram should be read by a cardiologist sometime between now and Monday. Don should get to come home Tuesday and I will have an appointment made with the surgeon at UofMand have him lay eyes on Don and read the results of all these tests. The surgeon's nurse has been calling every other day for an update from me as to how Don is doing.

Don is very tired because when he starts to doze off that dreaded coughing begins and they come in and do respiratory treatments as he needs them. But he really needs some quality sleep which is impossible.

We have a new GI doc and he has been good with us as far as explaining things. We might keep him around but I am not getting attached to any of these puppies just yet.

Will keep you posted and please keep some bail money handy. I cannot promise that someone isn't going to set off my ***** switch and I finally lose it. Lol

Hugs and a big FEC
Judy

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Sherri

They have not mentioned the positive margins at all. I was assuming that because nothing showed up on CTor PET scans that the cancer in the positive margins is kinda just sitting there and not actives. The surgeon did explain that with the positive margin they cannot say if they did or did not get it all but my common sense tells me it would be miraculous if that circumferential margin that tested positive contained all the cancer. It was my understanding they only test what they removed.

The medical oncologist is the only doctor we knew here at this hospital. Our primary care doctor does not come to Kalamazoo he only goes to the very small hospital where we live. When I talked with him when we were in Sturgis, SD he said it would be better to go to Kalamazoo. At the time we were in Sturgis we were thinking a very bad case of constipation and dehydration but it was in the back of our minds this could be a recurrence.

The primary care doctor at this hospital had to learn everything about Don from scratch. Then I found out that even though we called the med oncs office to tell them them we were coming here, the emergency room did not notify the med onc for whatever reason. The primary care doctor called the med onc for him to consult. I found out on Sunday that situation. I assumed the primary care doc here was following med oncs orders. What a f'd up situation. Now the med onc is in charge but he cannot order things here and has to tell the primary dude what he wants done.

They didn't put in a nasal tube because Don could not swallow anything beginning Saturday am and at the time they thought putting in the J-tube would be too much. Then I found out Monday after they put the PICC line in that med onc wanted it done on Sunday and TPN started then. So that didn't get done until Monday night after he made rounds. He rounds between 7 and 8 pm because his office hours are until 6 pm.

They are putting in a J-tube Monday because they couldn't get him on the schedule for today. They feels he needs this tube to ensure he continues to get the nutrition he really needs. He may not need it permanently but time will tell that. I am glad they are putting it in because he really struggles to get the amount of nutrition and hydration he needs. I am sure Don will be making different/better choices for nutrition in the future.

Had I known what this past week would have turned out like, I most certainly would have taken him to Univ of Mich. we drove right past there on our way home from Detroit metro airport. I thought it was constipation and dehydration and they would get him fixed up and we would be on our way home. I had absolutely no clue that things would get so f'd up here and thought I was doing the right thing by not going to the other hospital was where the gastro doc told Don that after this type of surgery it is common to develop pain like that from either scar tissue or severed nerves and to start taking Norco for the pain and realize that this might be something he would need to do for the rest of his life. I knew we were not ever going back to him when he said that. That is why I had an appointment with our surgeon set up for Don the Monday after we were supposed to return from Sturgis. It turned out that Don got much worse while we were in Sturgis and we needed to come home. I swear that I thought it was constipation and dehydration. His left leg and foot swelled up on Tuesday after we had been to the emergency room there on Monday but the doc out there changed his pain meds and gave him a liquid laxative and though it crossed my mind with that leg and foot swelling that it could be his heart (my dad had congestive heart failure for years so I had seen the fluid retention before) I also wondered if it was his kidneys or liver from all the narcotic pain meds he had been given. I just wanted to get him home. Then I got scared that he might have had a blood clot so I wanted him to be checked by the ER in Sturgis again before we flew home and then they started checking other things and the desire to get home became even stronger. I really did not know what the next 9 days would be like.

I have done nothing but regret my decision. I will get him to Ann Arbor as soon as they get that tube in here on Monday and let him go home on Tuesday. IF one more thing goes to hell here over the weeken I will insist they get him to Ann Arbor. I am scared to death to think that this fluid may be cancerous and now I find myself praying for congestive heart failure. You don't know how sorry I am that because of my decision to come here instead of there things got worse before they got better. I hope that my husband lives through this and whenever will go tis way again.

I think I answered your questions but if I didn't give me a call because right now I will do just about anything. I am so sad and upset.

Judy

mrsbotch
Posts: 377
Joined: Oct 2010

I read your post and am so sad for you,. Honey this is NOT YOUR FAULT. You have done what any of us would do. YOU took your husband to the hospital because you were so scared of how he was feeling. The regrets that you feel are normal BUT NOT YOUR FAULT.
How would you ever know this was going to happen. I still have the woulda's coulda's shoulda's But it does not change anything.

We are not drs and we rely on our drs to make the right decisions. In the case of EC this sometimes does not happen.

Judy none of us wanted to burst the bubble of the cancerous fluid. I hope beyond hope this is not what it is.YOU ARE NOT TO BLAME.

I remember begging Vince to go to a major cancer center and he would not. OMG Judy I have regretted that decision for so long .

I CANNOT SAY THIS ENOUGH.

IF YOU OR YOUR LOVED ONE HAS EC GET AS FAR AWAY FROM YOUR LOCAL FACILITY AND GO WHERE THEY DEAL WITH EC NUMEROUS TIMES.

I don't care how much you "LIKE" your dr if he is not familiar with EC and what it does to a person's body GET OUTTA DODGE.

I learned that the hard way.
So many people want to stay close to home because of travel and expense.
BELIEVE me neither of those things matter once the person is gone.

Judy you love Don with all your heart and he knows that. Its the disease that is causing you and him the anguish.

I will call you later honey.

Barbara

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

I know you are right and I would be telling anyone the same thing. IT IS NOT YOUR FAULT.

One of the many free 'perks' with this beast is all the guilt you want and no extra fee.

One cannot help but feel guilty and be angry with the docs and nurses. I think it is a completely human to feel this way but in reality it is no ones fault. It is part of the package. Hindsight . . .

Sometimes you are just damned if you and damned if you don't.

Can't wait for the J-tube and get outta dodge!

thank you so much for your support. Your call and Sherri's and then a chat with Freida was as good as any vodka tonic last night!

Hugs and a huge FEC,
Judy

mrsbotch
Posts: 377
Joined: Oct 2010

Glad you will be on your way to Ann Arbor on Tuesday. Have you called them yet? I really think the hospital you are at should ambulance him ever to U of M. Is that possible or will you just drive him?

Are they going to test his fluid tomorrow? If they do , which they should, the results should be immediate if the radiologist is on duty.

Is he still on TPN?

I know how overwhelmed you are and I wish I could be there with you just to hold your hand. This is alot of SH.. to handle.

I was a raving lunatic while caring for Vince. Its tough and it takes a lot of guts to get thru this.

JUST get to U of M ASAP and I really believe you will have your answers.

I left a message for you but know you are so busy.

I'll call you tomorrow.

Love

Barb

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

I know you are right and I would be telling anyone the same thing. IT IS NOT YOUR FAULT.

One of the many free 'perks' with this beast is all the guilt you want and no extra fee.

One cannot help but feel guilty and be angry with the docs and nurses. I think it is a completely human to feel this way but in reality it is no ones fault. It is part of the package. Hindsight . . .

Sometimes you are just damned if you and damned if you don't.

Can't wait for the J-tube and get outta dodge!

thank you so much for your support. Your call and Sherri's and then a chat with Freida was as good as any vodka tonic last night!

Hugs and a huge FEC,
Judy

Bermudagirl
Posts: 120
Joined: Jun 2012

but you have been so kind to me over the past 2 months that I've been on this forum. I want to second everyone else's comment that this is not your fault! I know that you know that intellectually, but emotionally its a whole 'nother story. And most importantly your husband doesn't think its your fault. You did everything right, given the set of facts you had at the time.

I hope this weekend is finding things a little more settled for you. Hope you get Don moved to Ann Arbor this week. And yes, stick with the "big boys". You need specialized care, and a center that deals with EC.

My very best wishes to you and Don,

Sandy

monica_sss
Posts: 57
Joined: Dec 2011

You must be so physically and mentally drained -- please go easy on yourself (I know easier said than done). Don is getting along better now and that's what is most important. Big YAY on the clean scan =)

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