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Long overdue update on my dad- Hospice called in

Altra's picture
Altra
Posts: 27
Joined: Apr 2011

It's been a rocky year with many ups and downs. My dad was diagnosed in April 2011 with stage III EC. He received six weeks of chemo/radiation, and in August 2011, had a complete removal of his esophagus at Beth Israel in NYC (which is about an 8 hour trip from where he lives, by the way). Six or seven of the nodes removed had traces of cancer, so we knew it was very possible that the cancer could return. The doctors recommended NO post-surgery chemo. And since the first round had made him miserable, he agreed.

His recovery from surgery was rough. He lost a lot of weight, and my mom was practically forcing him to eat. In November and early December, things started to look better. His appetite returned slightly, and he was able to briefly do some of the activities he enjoyed.

Then the pneumonia hit. He had taken a turn for the worse, but finally agreed to go to the local hospital to be checked out. We feared it was the cancer back. They did a CT scan- didn't show any signs of cancer. The culprit was pneumonia, due to aspiration. He was put on several different antibiotics, but it was a month or more of constant misery for him. He couldn't sleep, due to constant coughing up, what he described as "green goo". He wasn't able to keep any food down, so by early January 2012, my parents made the trip back down to NYC to get advice from the surgeon.

The doctors thought scar tissue buildup could be the culprit behind his inability to keep down any food, but an endoscopy showed no scar tissue. They then proceeded to suggest his stomach muscles might have been perminantly affected by the surgery and therefor, might not be able to process food correctly. They gave him a prescription for some obscure medication that had to be shipped in from Canada, and sent him home.

By the end of January, it was apparent that nothing was helping. He couldn't sleep, couldn't eat, couldn't do anything but be in misery, so, back to NYC they went. My dad was in the hospital four weeks. FOUR weeks, while the doctors scratched their heads and couldn't figure out what was wrong with him.

They waited almost two weeks before they gave the poor man a feeding tube. They subjected him to test after test. They did an ultrasound, CT and PET scan, all of which did not show signs of cancer. His liver numbers shot up when they started giving him an anti-fungal medication for what they suspected to be a fungus growing on his vocal chords. So they ordered a liver biopsy done, results came back negative for cancer.

Three weeks into his hospital stay, the doctors suddenly decided that maybe there was a blockage, and that was why he kept coughing up/puking up everything he tried to drink/eat. Well, duh! We could have told them that was probably the problem three weeks earlier. They did a barium swallow test, and when that failed, they ordered another endoscopy done (keep in mind that he had just had one done a little over a month previously).

A blockage was found in his lower stomach, where the stomach connects to the intestines. The doctors said there were suspicious cells there, so they took a biopsy, and decided to put in a stent to keep the passageway open. Stent started working in 4-5 days after being placed, but my dad was too scared to try to eat anything, so he was relying on his J-tube for nutrients. The coughing/puking gradually spotted though.

January 28th- biopsy results are in. Not good. The suspicious cells tested positive for cancer. The doctors informed him that the EC was more than likely in his lymph system now. I am no doctor, nor do I understand the medicine world, but it was shocking to me that the endoscopy done a month earlier found nothing, nor did the CT and PET scans, nor ultrasound, but here the cancer is, back so suddenly and without warning.

My dad just wanted to go home. He was miserable at the hospital, and with the horrible news that the EC was back, he understandably wanted to return to the comfort of his own home. He had said months back, that if the cancer returned, he wouldn't subject himself to chemo again. So, a week and a half ago, Feb 1st Hospice was called in.

They arrived the day before he even got home, and set up a hospital bed that was ready and waiting for him when he was rolled into his house via a wheel chair. I have nothing but good things to say about our Hospice experience so far. They have provided just about everything he needs- breathing machine, sanitary supplies, and pain controllers.

My dad's pain went from a 9 to a 4, since coming home. He's being given morphine several times a day, and also has some kind of pain patch on his skin (sorry, I don't know particular medicines). As of yesterday, he reports being "mostly comfortable". He sleeps a lot, is very frail and weak. It's hard to watch sometimes, especially when I think back to a year ago, when he was so full of energy and life.

His mood is and has been somber. Not many smiles out of him. He doesn't wish to prolong his life if it is going to be poor quality. He's had many MANY visitors, which he appreciates, but it stresses my mom out I think. I've been stopping over daily, and plan on staying there overnights soon.

He had some abdomen discomfort this past week (bloating), and the local doctors suggested decreasing the amount of food given via the J-tube. That seemed to help, but my mom reported having to keep decreasing the amount of food daily, because he can handle less and less of it now. Yesterday he was given only two cans, I think. He enjoys popsicles, and eats a couple of them each day.

My mom reported that he has had some confusion the past day. He woke up in the middle of the night convinced he was in a graveyard. When I arrived later that morning, I didn't notice any confusion. He talked (well, whispered) like he normally does.

As of this morning (Saturday 3/10), the abdominal discomfort is getting worse. And he is experiencing shortness of breath. The Hospice nurse suspects it is fluid building up, and pressing on the lungs. My parents are trying to decide if they should go to the ER or not.

I've been in somewhat denial for the past few weeks, hoping that once he got out of that prison of a hospital, he'd get better (and he has, mentally, I guess). I guess I am trying to accept the fact that my dad's time is limited. Sometimes it's easier to pretend that nothing is wrong. It keeps the tears away at least. My mom is trying to stay strong, and she is taking such great care of my dad, doting over him 24/7. She is very angry at the hospital in NYC though, and the month of torture they put him through there.

Sorry for the short novel of a post. I hadn't updated on my dad's status in months though. I will probably be posting updates as events unfold over the next days. Trying to stay strong, but I've already had my moments.

Oh, and I heard there is an EC Facebook group but I don't know how to join. If anyone could help me with that, it would be appreciated. Thanks!

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

So sorry to hear about your father's issues. I know when my husband was in the hospital last month, he couldn't get out soon enough. I can't imagine if he'd had to spend a month. Hospice is wonderful for helping keep someone at home.

If you'd like to send me a Facebook friend request ( Mary Lewis Ruble), I will get you added to the group.

Prayers for your father and all of you as you face the challenges ahead.

Mary
Widow of Chad
Diagnosed October 2009, left us behind March 1, 2012

Altra's picture
Altra
Posts: 27
Joined: Apr 2011

Mary, you are on my FB friends list already I believe. I'll message you about joining the group. Also, I am very sorry to hear about Chad. Just know that you aren't alone. I can only imagine what you are going through right now. :(

Ida, I am glad that you are having a positive experience with Hospice as well. Keeping Jarrell and you in my thoughts.

ifalk
Posts: 30
Joined: Jan 2012

I feel your pain. My husband Jarrell was diagnosed stage four in July 2011. I find myself very angry with doctors from the doc that misdiagnosed him in Jan. 2011 to the ongoligist and especially the radiation doctor. We were shuffled around told he was a surgery candidate then he wasn't then he was then he wasn't then they were not sure. He did chemo from Sept till end of January and did 28 radiations at the end. The radiation doc told us his goal was best quality of life for longest time. After Jarrell suffered thru the radiation going down to 101 pounds, our last visit we were told " Go see what the ongoligist wants to do" Where did his goal go for quality of life. He wrote us off. My thinking he made his money so just get rid of us. The chemo doc wanted to keep pumping the poisen in him, which I admit in the beginning did real well shrinking the tumore. The chemo at that point was making him so sick and he was in so much pain feet swollen teeth falling out ears pluged up on and on and on.

I finally ask the chemo doc if we were putting the poisen in him for no reason she would not address my question just danced around it ( she still had money to make) Jarrell dediced no more. We called hospice in and his quality of life has emproved 100 percent they gave us everything he needs and more. He is now living and enjoying his days. The burden they lifted off my shoulders was amazing. I no longer have to fight for the treatments, medications etc. There are no more treatments and his meds are delivered right to our door. I no longer have to wonder if a trip to the ER is nessasry as we have a 24/7 number to call and a nurse will be here. They have a hospice house he can go to to recieve what ever he needs that can not be addressed at home. The doctor comes right to the house also. I am recieving counseling thru hospice.

I have had my share of moments when I thought I would loss my mind. I have learned thru hospice there is no room in our daily lives to worry or stress over what may happen only room to enjoy the time we have left. I am managing to keep the monsters away from my mind thru meditation. I still have my times but manage to control it now.

Wow when u talked about the confusion that hit home. Jarrell scared me so many times talking out of his head. One night he got up and told me he died but got thru it. I am thinking now it was from the chemo in his body.

You are right on hospice keeping them comforable. Jarrell went from a 10 to a 4 within 48 hours. I can not say enough about hospice just that I feel some people wait to long to call them in they can give such a great quality of life and maybe even extend it longer I know they have for us. Jarrell gained 9 pounds in a week with his medications they have him on. He was starving to death before my eyes and in SO much pain.

Just wanted to tell you my story and let you know you are not alone and with a posative attitude who knows you may still have lots of quality time with your dad.

praying for you and your family
Ida

paul61's picture
paul61
Posts: 1111
Joined: Apr 2010

It seems like this disease has no predictability. Your Dad certainly has done all the right things to battle this. Sometimes it seems that the testing goes on forever.

I am so sorry that your Dad had such a difficult time in the hospital. I was only in the hospital for 12 days when I had my surgery, but I was so happy to get to go home. It is almost impossible to get any meaningful rest there.

I am glad your Dad is now home where he can get some rest and be close to the people who care about him. I have heard many good things about hospice here. I hope they can provide the support and peace that your Mom and Dad need at this time.

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
Two year survivor

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

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

Thank you Altra and ifalk for both sharing your stories. I am so sorry for your loss and I'm sure it's comforting to know your loved ones are no longer suffering, I am right about where you were in this original post and just prepping myself for next steps and what to expect. I can't believe the time is here...my mom was striving to live another 20 years. This is just heartbreaking.

hopefulsd's picture
hopefulsd
Posts: 11
Joined: Jul 2012

Thank you for sharing your story. It was difficult to read, as many other stories on here are. My family had the help of hospice with my grandfather a few years ago and they were terrific. Currently, my dad has EC and is going for surgery in 2 days. I'm not sure which is scarrier, the surgery itself or the post-op life he will have. He doesn't listen to my mom or I when we try to tell him what it will be like. I don't think he fully understands that he may need a jtube, will need to sleep elevated for months (if not forever), that his eating habits will drastically change or that he may need another round of chemo. His perception is he will have the mie, recover, and get back to his daily life. I just wish he would sit down and read about all the possible complications and
life style changes so that afterwards he won't feel so depressed.
Prayers for you, your dad and your family. Just being there with him whenever you can is the best gift you can give him. This disease is horrible and I wish none of us had to go through it.

Bermudagirl
Posts: 120
Joined: Jun 2012

Thank you! I have found myself stresing on all the "what ifs". But you're right; its out of our hands. I am going to try, mighty hard, to follow your advice. Dave's surgery isn't until October, so why make myself nuts worrying about what *could* happen.

hopefulsd's picture
hopefulsd
Posts: 11
Joined: Jul 2012

Your letter really made me feel a lot better. I would never think of your replies as being too harsh or disrespectful, so please know that I respect and appreciate your straight-forward replies. Who better to get advice from than someone who has lived through this and come out with such a positive outlook. I am "hopeful". I just don't want to see him in any situation where he feels helpless. But, as you said, we can't predict the outcome. Yes, Walt has an excellent surgeon and we know that he is in very good hands. You were right about the original date for surgery, however, I didn't keep you updated. Surgery was postponed because Dr. Fabian saw some spots on the last pet scan and wanted to be sure there were no mets. So instead of surgery on the 2nd, he had a biopsy ( done up in Albany by Dr Fabian), which was negative. So we got the all clear for surgery, which will take place this Thursday, the 9th.
Thank you for your honest reply. I guess I just needed a "smack to the head". My email is heshi411@gmail.com. I'm not sure how to send it to you in a private message but I will try to figure that out. Will keep you posted.
Hugs,
Hopeful Heather

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