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Has anyone heard from Hopper52?

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

I was sitting here thinking about our friend Michael and was wondering if anyone had heard from him? I looked back and I think the last we heard from him was back on the second.

chemosmoker's picture
chemosmoker
Posts: 524
Joined: Aug 2011

Jim,
I have not heard anything since his last post. I can ONLY hope he is still hanging in there with his family and doing as well as we can be expected to when we get bad news. After the last big update on Set. 29th, I haven't heard much either. I will re-post what he wrote then, here, to catch everyone up so they don't have to search, and then we can hope he is doing well enough to post something new, and let us know how he is managing now.

Our prayers are with you Michael. Thanks for the post, Jim!
-------------------------------------------------------------------------------
Sept. 29th 1:19PM
Well, it's been a week since my aborted surgery and the bad news. I feel I should share what transpired and where I am now. I had my MIE scheduled for Oct 07th. Not having difficulty swallowing but it seemed like nothing or very little was passing through. On Sep 12th my abdominal pain got unbearable and my research indicated a possible small intestine blockage. I called the surgeon and was advised to get to a hospital like quick. No beds open at Moffitt so I spent a week in a local hospital waiting. They did another CT scan and the ER doc said he saw blockage but he also saw tumor. They put in an NG tube to keep my stomach drained until I could get to Moffitt, where I was admitted, had another CT ran, upon which my oncologist came up and said I have weeks to months. The surgeon decided to have an ultrasound done but the ultrasound tech couldn't see any tumor (again a ray of hope). Surgeon came in and said he was going to go in and clear the blockage and check for tumor in the small intestine area and if there was none he would proceed with an Ivor Lewis. Unfortunately there was mucho cancer in my abdomen. Could take out some but the other he just resection and isolated. So I'm recovering from that surgery now. Having a lot of pain and an infection that I'm on antibiotics for. Receiving lots of loving care from my wonderful family and if we can get this infection/pain issue under control I can get back to having some quality time with them. I'm on morphine sulfate 30mg SA every 8 hours with oxycodone for breakthrough pain.Any suggestions would be appreciated. Like I said, once the surgical pain and the infection goes away, I'll be able to get a better picture.

On the mental and spiritual side, I'm not willing to accept weeks, months etc. When the Lord calls me I'll go. On the day Hezekiah was to die from sickness he asked for more time and God gave him 15 more years. How blessed we should be if He would do that for us all.

Mentally, I'm still dealing with the finality of it. Thought the other night that I guess there's no two minute warning. I'll just keep taking it one day at a time and trust in my God.

Thanks for everyone's prayers and support

Michael Daniels Stage IV
Brandon FL
--------------------------------------------------------------------------------------
God bless you Michael. I hope and pray you are well.
-Eric

hopper_daughter3
Posts: 9
Joined: Sep 2011

Thank you so much for your care and concern. We've had an intense and emotional last few weeks, so we have failed to keep you all updated on Dad's progress. We have had MANY complications in the past two weeks and honestly, it's almost put the cancer at the lower end of our concerns. A few days after dad went home, he noticed much more pain and swelling in the abdomen. On that first Friday home, his sutures opened, pouring at the least 2000cc of fluid from the ascites. We personally decided to rush him to the emergency room, and were VERY disappointed in hospice's lack of alertness and reaction to the situation in which they didn't urge this at all, but rather suggested we wait until Monday for a nurse to come out and drain it. Once at the emergency room, the doctors took one look at him and immediately took him into the ER where he went into surgery that lasted through the night. He had developed septicemia (we worried all week that he had an infection, but were waiting for hospice to finish the lab work to confirm) and his heart rate was extremely low (perhaps related to a completely clogged artery which they discovered), and his bowel was still obstructed. The doctors did the best they could, but ultimately painted a grim picture of dad's chance at surviving through yet another surgery. But, if you know Mike, you know he's a fighter and perhaps has the toughest body we've ever seen. He made it through the surgery and has since, every day, surprised the nurses and doctors with his progress. He has the G tube to drain his stomach and has a wound vac from the surgery (they had noticed and repaired a disconnection between the stomach and intestine, and the wound vac is amazing because it will keep him from getting an infection, unlike the surgery he received at Moffitt). So now he has been at Brandon Regional Hospital for two weeks and we have yet to concretize a release date. Because of the wound vac, we are unsure when he will be able to come home and some nurses and hospice are talking about a hospice assisted living facility where the staff would be able to manage the wound vac.

Through all of this, we can tell dad is very depressed, but he lights up when he hears us laugh or just talk about random stupid things. His eyes still have some spark in them. We are all trying to keep hope through all of this but it is beyond exhausting. We are wondering if ANYONE can give us some information/advice on these problems:
ASCITES: from our research, the ascites is quite common in cancer patients but we find little information on ways to address it. We are very concerned about this condition and are not sure what to expect. It isn't something the doctors have directly addressed yet, which is surprising because it is a very serious problem, especially with how quickly it can build up.
WOUND VAC: if anyone has had experience with not being in the hospital while with a wound vac, we would like to know our options. We have yet to talk to a doctor about this, and are unsure how long he will have it. But our impression is that he will have to be somewhere where they can monitor it, which might impede him coming home.
HOSPICE: we have only heard amazing things about hospice and have heard that our local hospice is fairly broad in scope in how much they will accommodate for their patients. However, we were extremely upset at the lackadaisical attitude of our last nurse (It was about 3 hours until she arrived, and only after calling hospice several times. She was continually making jokes while dad was hunched over in pain due to the infection, and only took the situation seriously when he clocked in a 103+ fever), and their inability to acknowledge the severity of his condition makes us very concerned that they don't comprehend that we are NOT GIVING UP and we do not view this as necessarily end of life treatment. We may have limited curative options, but palliative treatment should still respect the life that is being lived -- emphasis on life rather than end. We know they are very beneficial and helpful compared to trying to do everything ourselves, but we are still so discouraged and would like to ask for better treatment in the future.

Please keep Dad in your prayers and thoughts. We are fighting everyday and know Dad wants to get better, not give in. We've never cheered so much from him passing gas or releasing stool. It has truly brought us closer and we want this closeness to last much longer after he has come home and healed. Wishing the best for you all too!

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chemosmoker's picture
chemosmoker
Posts: 524
Joined: Aug 2011

To ALL of Michael's Daughters and family,

We are keeping Michael and you all in our prayers and thoughts daily. I hope the posting of this thread lets you see that in action.

We ALL miss Michael's contributions to the board, his presence, his life and energy he ALWAYS displayed, and his compassion and his VOICE here. We are ALL rooting and pulling for him, right along with you.

I WISH I had any advice on the Ascites or the Wound Vac, or any of those issues. I will hope someone can post some helpful information on those. I have none. I WILL be going to read up and learn now though. I will share ANYTHING I find out.

As for Hospice, I am so sorry you are having that type of experience. It doesn't sound right at all. Having someone making jokes or not taking Michael's recovery seriously makes me see red. I hope this was as ISOLATED event with that particular nurse? If not, I know there are many different agencies, and I hope you will call one of the other agencies and ask them to take over Michael's care at once. I know we were faced with "hiring" hospice and that was to be from the different agencies that could come out. We had to pick which one, they all would kind of come and sell you on their services. We only ended up calling the first one we called, and we are still with them and for the most part have had a good experience. But, we have had NONE of the extreme experiences you all have had! I would expect and hope they are the BEST at being there for you, and handling these types of situations. Bothers me a LOT that they don't seem professional. PLEASE keep us posted when you have the energy on this. I am concerned to say the least. Let ME call their supervisor! I would highly advise you complain to their higher-ups and possibly to the local medical board?? Get some relief!

You will all need your energy to be there and help Michael.
I hope you get some of the answers you are looking for through this board.

May God bless all of you, and keep Michael strong and alive and well.
I will pray for this end. I want him HOME with you just as much.
Please tell Michael we are ALL pulling for him here. We EXPECT him back!
-Eric

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Wpturner05
Posts: 120
Joined: Aug 2011

As Sherri already said, ascites is managed by being drained periodically as your father becomes symptomatic. This is usually not done at home, but with the push for more care at home, that may have changed recently. Unfortunately, this is the only option that I know of.

The wound vac can definitely be cared for at home. I know this for sure. When this is set up with the agency, request a nurse that has been specifically trained in his type of wound vac. If necessary the wound vac company can train you and the home care company/nurse. You can call the manufacturer of the vac and they will help you. More often than not, the reps from these companies are nurses who are uber caring and well trained. You will find a wealth of information from them. Do not hesitate to call . .

Hospice . . . . I did it for years. Waste no time, call the agency, give facts of the situation, tell them that nurse is not welcome back in your home and you would like another nurse when the time is right. Level headed, factual information and a request for different care should be granted. If you are not treated with the utmost respect and dignity DURING that call, thank them for their services, ask them to CLOSE you father's case so that you can move onto another agency. (home care agencies cannot accept a patient if they are 'open' with another company).

Sincerely,
Whitney

paul61's picture
paul61
Posts: 1260
Joined: Apr 2010

I am so sorry to hear that Mike has had these complications.

When I had Ivor Lewis surgery for my esophageal cancer I developed an infection in my surgical incisions after surgery. I had a nine inch incision on my back that had to be re-opened to clear the infection. In order to accelerate the healing process and reduce the chance of further infection I wore a wound vac for a little over a month after I came home from the hospital.

I had a home care nurse come to the house every couple of days to change the dressing and check the incision. There certainly is an option to return home with the wound vac. Changing the dressing used with a wound vac requires some special nursing skills, so I would make sure who ever changes the dressings has some experience in working with a wound vac. I can tell you from personal experience that having the dressing changed by someone who does not know how to do it can be very painful.

I will continue praying that Mike recovers from this surgery and has some quality time with his family in the future.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

BMGky
Posts: 665
Joined: May 2010

Prayers for your Dad and for you all. What a fighter! It is so wonderful you are there with him. He can enjoy your company, and you can enjoy his as well as protect him from people who don't know how to do their job. You Dad has really tugged at our heart strings. We continue to pray for his comfort and for continued time with you. BMG

rose20's picture
rose20
Posts: 277
Joined: Jan 2011

Thank you for the update on Michael. I too was wondering if anyone heard from him. So sorry for all he is going through. I pray for more peaceful days ahead.

hopper_daughter3
Posts: 9
Joined: Sep 2011

Thank you so much for your responses, and for the advice and information. We are definitely going to be in touch with hospice about the kind of response Dad received a couple of weeks ago. We're also going to ascertain the kind of care we can expect over the weekend; that's a real concern.

It looks like Dad is going to be released tomorrow to the hospice facility. None of us was at the hospital when the hospice representative came to speak with our parents, but it sounds like the wound vac isn't an option for home *or* the hospice house. They want to change him over to dry dressings and then have him transition at the hospice house to home care -- teaching us how to change the dressings, etc. We are going to contact the wound vac company and really anyone else we can about other options, but it sounds like hospice--or our particular hospice--actually limits what we can do. We are really frustrated about this, especially now that we have less time to explore these other options.

Dad is hanging in there--and still making jokes--but he's very weak and not able to eat much, and we are trying to stay on top of pain management (maybe hospice can come through for us here). We're trying to get his strength up to keep fighting and come home. We'll keep you all posted.

And: you all are amazing. Thank you.

chemosmoker's picture
chemosmoker
Posts: 524
Joined: Aug 2011

No, it is YOU all that are amazing...
if there is ANYTHING any of us can do, please ask!!
We can make calls and find out about hospice and in-home wound vacs and anything else needed. I have nothing but time at home to do this if I can be of any help and you have so much on you all.

God bless and let Michael know we are ALL pulling and praying for him!!

-Eric

hopper_daughter3
Posts: 9
Joined: Sep 2011

Thanks, Eric, and all of you. We just found out that Dad can come home with the wound vac! We just weren't saying what we wanted loudly enough -- lesson learned. We'll know more in the morning when we speak with the doctor, the hospital social worker, and hospice, but some amazing nurses listened to us and passed along the message, and Dad will be home soon, which is just what he (and we) want.

More soon. Love and peace to you.

jss2011
Posts: 137
Joined: Sep 2011

Sounds like you are getting everything sorted. Sometimes you do have to push for what you want, or what you know is best. Prayers for you all.

Julie

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

Thank you for the updates. Sorry to hear that he's having such a tough time. I think about your Dad often. As I'm sure you ladies know, he's easy to become fond of. Please pass along our love and concern.

chemosmoker's picture
chemosmoker
Posts: 524
Joined: Aug 2011

So glad to hear that Michael will be at home and at peace with his wonderful daughters and family again. NOW his real healing will begin again I know.

God bless you ladies for taking time, in the midst of unimaginable stress on all of you, to keep all of us updated like you have. It means a lot to know how our brother Michael is doing, and goes a LONG way in showing what a great father Michael is and how well he raised some amazing children that obviously share the love and giving spirit that is one of Michael's enduring hallmarks, and it shows through all of you, as much as it does through him.

I can only imagine how proud he must be as a father of you all.
I am. We all are.

All of our love, and God speed on his recovery.
May God bless you and keep Micheal strong and pain free,

-Eric

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