Today is day 150 post op for my husband. A long five month stretch roller coaster with plenty of good but its fair share of UGH! No one ever said dealing with cancer is easy. It isn’t even the cancer that has been the hard part. It is dealing with every spin off life throws at you because of the cancer.
This man has been an inspiration to watch. Even on the days when I feel horrendous that there is nothing I can do to help him, he knows I want to. The hardest thing I deal with is the constant apologies when he has no control. Sometimes, my biggest role is reassuring him that none of this is his fault.
Recent post talked about his NED status. Still very happy about that. He is nearing being able to work fully again, although there is not much he passes up now. His goal was to be exceedingly cautious until at least six months post op. Getting close.
Overall, he has been maintaining his weight. While he is a bigger guy and could stand to lose a few pounds, this is perfect. We do not want to see any sudden or rapid and unexplained weight loss.
He is involved with life and looking toward the future. It is good to have one of us focused ahead since I live primarily day by day. I keep is focused on the here and now, he sets more of the long term goals, and yet he keeps me grounded when I have rough days and would rather live in my books.
Every holiday and birthday, even just every day in general, we are grateful for.
His last dilation lasted longer than the first. He could feel the difference between the first dilation with standard dilators and the second which was done with balloon dilators. We met with the surgeon on 3/18/16 who was very pleased with his CT scan and at the time decided with Joe to hold off on another dilation unless symptoms he was having became worse.
He needs another dilation. Over the last couple of weeks his morning cough has gotten worse into including nausea and heaving/vomiting. It is incredible how quickly things can change. Just two days ago he wound up going to the ED because the bouts of coughing/nausea/vomiting have become so prolonged and severe that no home treatment or medication has been able to make him feel better.
The ED team was amazing. I am thankful that going to the ED for the hospital system that has been treating him is not much further than our closesr ED, so we can keep his records in one place. They were able to be in contact with his surgeon who wanted to have a barium swallow done. Long and short of it is that his anastomosis is scarring down too much again, which is causing problems with food going down and backing up.
A recent insurance change may push back the dilation up to a week, so he is trying to hang in there. Every morning he has to wait to see how he feels and make judgement calls as to whether or not he will be able to work. That irritates him when he is basically forced to stay home. As much as he does not like going under general anesthesia, he would rather be able to eat normally.
“No one told me this was going to happpen.”
Almost every day he says this. Everyone told him the surgery was going to be life changing. It is all the little things that can be different for everyone that are relatively unpredictable that bug him. I have tried to remind him that they cannot provide all potential side effects to every patient. He steadfastly refuses to be understanding.
Cannot blame him. Things will never be like they were, and the new normal may take a year or more to settle out. All I can do is be there for him, support him, and love him. We will get through the changes as a team. I would not wish for anyone to deal with this, or any, cancer by themselves. You need at least one person by your side.
To see if there any better results, we are switching from Reglan (metoclopramide) to erythromycin ethylsuccinate for the gastroparesis. He was on the erythromycin years ago so we want to see how it compares to the Reglan. He also had gone off of his PPI Prilosec (omeprazole) because he did not feel like it helped. But, he wants to try Nexium (esomeprazole) so he is. We will see if it helps at all.
Somewhere he also read that if he eats an apple at night it might help. I do not object to fruit, so, if he wants to try it we will. Between those three things, we will see if there is any change. No one honestly knows what, if anything, will help because different things work for different people.
New updates on him for sux months, and you will hear from me if anything major happens in between.
Prayers and well wishes to every cancer warrior. No cancer is easy, and it is all scary because there is no telling how aggressive any one person’s cancer will be, or how easy or hard a journey will be. In the support groups for Esophageal cancer, we have lost so many, gained so many angels since the beginning of 2016. I know that for us caregivers it can be hard, but the warriors never truly have a day off. They never know when their bodies are going to rebel or at the end give out.
I know as a caregiver my heart tears every time I watch him struggle. I feel awful when there is nothing I can do to make him feel better. If I feel that terrible, I can only imagine how he feels fighting against himself when things are rough.
Here are positive vibes as the second quarter of this year gets under way.
Perhaps the first quarter was merely a test. Power on! And love to everyone.