Amazing 4 Months
120 days post op is no small feat! Over the last four months I have felt myself cringing and worrying over every little thing and nuance as I watched my husband go through the healing process. He still has healing to do, but I could not be more grateful for where he is currently at. Honestly, his main issue is coughing in the morning.
We are still camped out on the recliners in the living room. We either need a new mattress to get back into the bedroom (it dips down at the head of the bed, so even wedges are not sufficient to keep him elevated), or to get an adjustable bed, but we have space constraints, so we’re working on it.
If those are the biggest concerns he has, I can be happy.
Since surgery, he has had to have two dilations. The scar tissue where his anastamosis is has been scarring down too much and causing him to have a choking sensation and sometimes almost actually choking. The first one lasted about three weeks and was done with normal dilators. He wound up also having a bronchoscopy with this dilation and we had to review the no food 3-4 hours before sleeping theory. If he eats too close to bed, he winds up having reflux with silent aspiration or aspiration that will wake him up
The second dilation was done with some sort of balloon dilator and did not have the immediate perfect result the first one created. It does seem to be lasting longer this time though and no bronchoscopy He has periods when eating where he starts to hiccup, but if he goes slowly with small enough bites he can usually avoid and issues or discomfort.
The coughing is a daily thing. He describes the mornings as trying to get air out of his stomach. Without the valve in between stomach and esophagus he says that he feels like air accumulates while he sleeps and coughing is the only way to get it up. He really doesn’t burp anymore and the positioning of his stomach and esophagus do not allow for muscle contractions to push the air out.
He has the same problem with dumping syndrome, which thankfully has never been as severe as the first time with lasagna. If he gets dumping syndrome though, he has to wait for it to run its course because he physically cannot throw up. I do believe it is, again, because of the new position of his stomach and esophagus.
I will be using the acronym NED a lot. NED means No Evidence Detected. This is the common terminology for post treatment/surgery cancer patients. It simply means that based on labs/scans/weight/etc. there is no sign of recurrent cancer at that time.
His first major milestone happened on 03/02/2016. He had a CT scan on 03/01/2016. The following day we met with his oncologist who basically walked in the room and said, “You’re fine.” The scan was clear. Labs were almost perfect. He has been maintaining his weight (although he could lose some in a safe manner and be fine, no unusual or rapid weight loss occurring).
This was the news we had been wanting to hear. To us, it means that he is cancer free. We hold very firmly to cancer free as it gives him the best outlook on continuing to live his life.
When I heard this news, all of my anxiety and stress quite literally evaporated. Well, any of it pertaining to his health. I am ecstatic and immediately started telling everyone that has given me so much support. The relief I received back was palpable and so welcome.
We meet with his surgeon 03/18/2016 to get his take on everything. It is important to make sure everyone is in agreement to where he is at medically. Three months from now we see the oncologist again, no scan, no labs, just to see how he is feeling. I have a feeling the surgeon will do a repeat scan for about six months.
If he needs a future dilation at some point, they will place a stent so that when the area scars down it scars down to the width of the stent instead of closing, then they will remove the stent to see if it stays open.
All in all, everything is going amazing for us. I continually express my gratitude to everyone that keeps us in their thoughts and prayers. I firmly believe that his tenacity to live as normal of a life as possible while going through this, plus the positive vibes, is what has gotten us through.
Prayers For Others
I do want to extend my prayers and positive thoughts to the fellow cancer warriors and caregivers, especially to those with Esophageal Cancer, but all cancers as well. This is not an easy journey no matter how short or long it may be. It can fully rule your life or it can be an irritating thing that you had to deal with, something that scared you.
It is not over until it is over and all we can do is live one day at a time, even sometimes one moment at a time.
Until next time, Everyone.
Be safe, be well, be loved!