Long overdue update on my dad- Hospice called in

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!