Now it’s harder than the beginning…
When my husband started his cancer journey, we had an idea of what to expect with the chemotherapy and radiation. We even had a sense of what life changes would be needed after his surgery. We had heard stories of what to expect. Steeling ourselves for the worst and working ever toward positive outcomes, he started on the life changing path. The choice was to fight or to die, because esophageal cancer will kill you if not treated in some fashion if the treatment itself does not kill you. My husband is a fighter.
Here we are post everything. About 5&1/2 months post surgery, roughly 3 months out from being 1 year since diagnosis. Now, it is hard. Now, he is fed up and there is nothing he can do about it. Now, I am stuck as more of powerless bystander than a caregiver at this point. Yes, I monitor him and his medications, and his intake, and everything surreptitiously. But what can I do when he is miserable and nothing I suggest or encourage him to try works to help his symptoms?
I have always said his biggest complaint since his esophagectomy has been a daily cough when he wakes up, every, single, morning. Without fail, he coughs. A minor cough that goes away at most in a couple of hours was irritating but manageable. Okay, that is not terrible.
Then, the anastomosis began to scar down too much, causing swallowing problems again. The first time it happened, he was scared that the cancer was back, and I do not blame him. Esophageal cancer is one of the most aggressive cancers out there. He only needed a dilation though. It helped for about 4 weeks, then he had a second one.
The second dilation was done with disposable balloons versus standard dilators. To try and help with his gastroparesis, he not only had the anastomosis stretched but his pylorus. This began a new set of problems that we did not understand at the time.
His daily cough morphed, changing into symptoms so pernicious that it has made daily life hard to get going. Now, there was nausea. Nausea and cough eventually turned into heaving. The position of his stomach and esophagus make actual vomiting nearly impossible, but the heaving still happened. About 2 weeks before his latest dilation he also developed some swallowing difficulty, so we were thinking that was the cause of the nausea and heaving.
At one point it was so bad he was sick for 10 hours, and the following day, he wound up in the ED for symptom control and relief. After that visit, he was scheduled the following Wednesday, about a week, for another dilation. Unfortunately, he got bumped for a critical case. Not wanting to wait another week, the surgeon coordinated to have him admitted on that Wednesday for stand by. It worked out, and he was dilated the next day. They kept him a day longer for a swallow study which he passed and was then discharged on that Friday. This was last week. He was fine until Sunday.
The symptoms of cough, nausea, heaving returned quickly and now he was bringing up bile. That was new and a bit terrifying when he had not been bringing anything up prior, except a couple of times right before the last dilation.
So, what happened?
The barium from the swallow study took forever to pass from his system, first of all. That made him feel backed up and sick. This bringing up bile thing was the scary part. We got in touch with his surgeon seeking answers. I was praying we would get some kind of idea as to what was going on. He was listening to his doctor. Sleeping upright or at the proper angle. Not eating too late. Taking his medication. He has even started to eat more appropriate sized meals.
With this third dilation, both anastomosis and pylorus were stretched again. The idea was to aid in gastric emptying so that while he slept food would not be sitting there unmoving and hopefully help avoid dumping syndrome. Sounds good.
The pylorus is the problem though. It may have been overstretched, and unfortunately, there is no way to know that is the case until you get the symptoms. Since the part of his stomach that was removed should negate the acid building up that causes GERD, this is now determined to be bile reflux. The symptoms very closely mirror GERD. It can happen when the pylorus is unable to effectively do its job which allow bile to come up into the stomach and esophagus, which causes the nausea, coughing, and heaving and bringing up of bile. Well, that is just peachy.
He is trying a cocktail of medication (Nexium [esomeprazole], Reglan [metoclopramide], Zantac [ranitidine], Ery-Ped [erythromycin ethylsuccinate], and possibly adding in Tagamet [cimetidine]) to try and reduce the bilius fluid and keep the bile moving in the proper direction. When the nausea hits he can try taking Zofran [ondansetron] ODT, Compazine [prochlorperazine], or Ativan [lorazepam] to help his system calm down, but if the symptoms come on too hard and fast it won’t work. That is when he winds up with an ED visit for fluids and IV meds since the oral ones stop working.
Some of his medications have been changed or added back in after being discontinued. We are going to try everything possible to get this under control. I almost think he would rather have small difficulties swallowing versus this bile reflux. We will meet with his surgeon within a couple of weeks for a symptom evaluation.
So, while I know this sucks royally for him, I struggle with my own sense of worth with regard to his care. This problem wakes him up, and in turn wakes me up. All I can do is listen to him suffer or bail out and leavr him to his misery. Either option leaves me feeling cruddy and useless. Every morning starts out with a period of stress and anxiety for me just watching and listening to him.
He always reminds me that this is not my fault and apologizes because “[I] didn’t sign up for this.” So, in turn I have to remind him that this is what a good marriage, a good partnership is. My intentions are to be together until one of us dies. Being together long term is not all about being in love. If these trials have not proved this, I do not know what else could.
To make you aware, if you were not already, April is Esophageal Cancer Awareness month. I will dedicate a later post to that. For now, I am wrapping this up and hoping for an uneventful rest of the day. May this, and other posts, provide information to help others on their journeys. If you have any other suggestions we might try, or that could benefit others, please feel free to comment. Thank you.