This is my first post here. I'm learning as I go, so I may not have all of the lingo or information completely correct, so please bear with me. I have been reading the boards for the past few days as I sit by my father's bedside at a community hospital in NJ. He has been in intensive care here for 9 days, rushed here by my mom when he started having difficulty breathing. He is 66 and was diagnosed with EC at the end of March 2012, and began chemotherapy (I don't know which meds; he is a stubborn old bird and hasn't let my mom or I be involved much at all with his treatment until this point). He had chemo once a week for 4 weeks and was scheduled to have surgery, where they were going to remove part of the esophagus and pull up his stomach and connect the two. One day before the scheduled surgery, one of his two surgeons called to tell him that he couldn't have the surgery because it would be too risky. He had gastric maltoma 9 years ago and was successfully treated with radiation; apparently the radiation caused extensive damage to his stomach tissue. So, we lost 2 months where he could have been getting treated, which is so frustrating.
Plan B was to have him start radiation in 3 weeks. During that time, he got progressively sicker and weaker, and he attributed this to the chemo. About 2 1/2 weeks ago, he finally ended up in the ER because he felt so bad (completey exhausted, lethargic, and stomach pains).
He was diagnosed with a mild pneumonia, kept for 2 days for monitoring (at the insistence of his oncologist), given oral antibiotics and sent home. After that, his symptoms continued to get worse, and at this point, he attributed everything to side effects from the chemo and the antibiotics. Finally, he came back to the ER last Monday night because he began having trouble breathing.
(Sorry to ramble, I just have a lot to get out and it's been a nightmare of a week and a half.)
He was diagnosed with a bad double pneumonia and a blood infection and was given 4 different IV antibiotics. They also discovered that the tumor had grown from relatively small to 8 centimeters, and had apparently caused a fistula and a hole to form in his esophagus and chest wall. They put a chest tube in to help drain the fluid from his chest, but his breathing deteriorated over the next few days, and he finally asked to be put on a ventilator. The next step was an extremely risky procedure where the doctors inserted a stent to close off the hole and block the fistula. Thankfully, the procedure went well and seems to be doing it's job. 2 days after that, his lung collapsed and they had to do an emergency procedure where they inserted a second, larger chest tube. (the thought was that the first tube wasn't large enough and probably wasn't getting fluid out of the bottom part of the lung, ultimately causing the collapse.)
Despite all of this, the infectious disease dr. told us today that the antibiotics seem to finally be starting to work and tomorrow they are going to begin gradually weaning him off the ventilator (a little at a time, each day) so that he can hopefully start to breathe on his own and then come off the sedation he's been on since they put the ventilator in. He also had a G-tube inserted during the stent procedure and they began feedings with it today.
So, now, we just wait and see and pray. Most of the doctors are concerned with getting past the infection and pneumonia at this point, but at least one (his infectious disease dr., not his oncologist) has mentioned looking into a tertiary care setting and also surgery.
I understand that at this point, the most important thing is tackling the immediate life-threatening issues before we can proceed to begin tackling the tumor. My mom gets upset when I even talk about "next steps", because she just wants him to pull through the pneumonia and infection and can't think any further beyond that. One of the docs did mention an esophagectomy (or, "tying off the esophagus" as he put it), but my mom doesn't even want to entertain that option at this point, because she thinks that will mean absolutely no quality of life for him. (I have read a bit about rebuilding the esophagus from the small intestine, but I guess that's a little premature). Right now, it isn't relevant, though, because in this conditon, he is not a surgical candidate. The only treatment options I can manage to get out of his oncologist (whom my mother claims is "excellent", but who has an absolutely terrible bedside manner, and keeps telling us not to get our hopes up, that he may never come off the ventilator, etc.) I understand the need to be realistic, but I also am not ready give up the fight yet and I KNOW that my dad isn't ready. He's an amazing, gentle man but he is one heck of a fighter; just retired last year and had what he calls, "the best year of my life". He is definately not ready to be done yet.
I am sure there is more information readers might need to give advice/info, etc. but any insight, or stories of hope and survival would be so wonderful. I should add that as far as my mom and I know, his oncologist never officially staged his cancer. I don't think it was beyond a stage 2 when he was diagnosed, but I am not completely sure of that. Because the tumor has grown so much (although it has not spread beyond the esophagus) and has caused the fistula and other problems, his infectious disease doctor told us today that it had definately advanced. (I seem to get more information from his infectious disease dr. and his gasterinterologist than from anyone else, especially his oncologist).
Ok. thank you for letting me vent/cry/reach out. I appreciate having this outlet and am grateful to everyone here.