Husband’s EC Fight
170 Days Later Recap
It has been 170 days since my husband was officially diagnosed with esophageal cancer. (171 days since we unofficially were pretty sure what the doctor was going to tell us.) 5 months and almost 18 days later he is doing remarkably well. I still look back on the time that has passed and wonder at the course our lives have taken.
According to his early imaging and the initial endoscopy, they were unable to stage his cancer. Imaging led them to believe that he was probably stage 2 but could be a stage 3. Luckily, his team at Lahey treat both stage 2 and 3 in a similar fashion.
We embarked on journey that would forever change his life, and mine by proxy as a caregiver. He had 5 and a ½ weeks of radiation with chemotherapy (carboplatin and paclitaxel) one day per week to boost the radiation. While he was able to work about part time through this treatment, his goal was to work as much as possible through all of this, there were definitely days and times where he had to opt not to work.
During his treatment, his initial trouble swallowing that had him seeking answers began to improve about 2 to 2 and ½ weeks into treatment. This only last about 3 days before problems began again and maybe even got worse due to internal radiation burn. It was around that time that he had a jejunostomy tube placed to supplement what little he could take in by mouth. He did have it removed about 1 to 2 weeks after his treatment ended once he could eat enough again on his own to maintain his weight.
The chemotherapy was a beast on its own. He suffered from constipation and dehydration and nausea frequently. Once we figured out how to get the constipation under control, he wound up needing oral steroids for after chemotherapy to help with the nausea. His ill feeling did get bad enough at the end that his medical oncologist decided not to give the last chemotherapy treatment. He said that 100% was best, but 80% was okay as they goal was to get him through treatment to surgery.
Following his treatment, he had a period of recovery to allow him to recover strength and eat what he wanted as his inflammation subsided, we scheduled his pre-planned surgery after discussion with his surgeon to make sure he still wanted to proceed. He was surprised by how he was given a choice. In his mind, the only choice was to go ahead with surgery. He wanted to be cured of his cancer.
Surgery happened on November 4, 2015. It was quite possibly the longest day of my life. His surgery was 9 and ½ hours long. I was waiting with his parents for 11 and ½ hours. So much waiting. I felt like I would go crazy. I had such an outpouring of support from my Facebook support groups and people texting me.
He had been told he would be out of work for 2 to 3 months with recovery. His progress has blown them away. He pushed to have his tubes removed as quickly as possible and was discharged after 9 days in the hospital with only the jejunostomy tube in place. He was back to work 2 and ½ weeks later being approved by his surgeon for activity to his comfort level without straining or anything too physical and progressed from a full liquid diet to a full diet before Thanksgiving.
He was able to enjoy his Thanksgiving and ate two small meals and had pumpkin pie. The feeding tube was removed not long after that. He insisted that it come out or he would remove it. Luckily, he was eating well at the time.
We were given information about his pathology research post operatively by his oncologist and his surgeon. He was officially stages as being stage 3. He was T3N1Mx Esophageal Cancer. They were confident that the cancer was removed surgically having been pre-shrunk by treatment. They had been as aggressive as possible in its removal. For now, there was no clean up chemotherapy. They would watch him by scans.
Now – 60 Days Post Op
My husband is my hero. He is impatient and annoyed with his progress. I keep reassuring him that he is doing exceptionally well. His surgeon saw him briefly for a stint back in the hospital where they were checking him blood clots because he had some trouble catching his breath. He looked so good that his surgeon thought his surgery had been months ago, not weeks. He wound up being okay.
He struggles with reflux at night if he eats too late. A couple of times he has woken up feeling like he had aspirated while sleeping. That is currently his biggest fear. Any time it happens, he wakes up. He is afraid of the day when it doesn’t wake him up and hurts him. He has had severe dumping syndrome once, with lasagna, and we think a few minor episodes that didn’t bother him too bad.
He coughs every morning. Coughing spells bad enough to make him feel like he may get sick. Oddly enough, once he manages to eat, they subside. With it being an every day thing, he is tired of it. He also spends a majority of nights sleeping in his recliner. We were given a double reclining couch years ago by a coworker of mine that was getting new furniture. Who knew it would come in handy? I usually sleep in the other recliner to stay close to him. He really wants to get back into the bed though, so we keep trying new options.
About 2 weeks ago, he started to develop problems swallowing. This, with good reason, really freaks him out. I tried to explain to him that he more than likely only needs a dilation due to scar tissue around his surgical site. Even though the main stricture will be down around that area, he could feel it up toward his throat where he says the food is sticking. I guess I will need the surgeon to explain it to him though, because he does not want to believe me.
He really thinks it is cancer. I know that esophageal cancer is one of the more aggressive cancers, but I am choosing to believe he only needs the dilation until I am proven wrong. He is scheduled to see his surgeon this coming Friday with a dilation planned for the following week. Luckily, the swallowing issue seems to have hit a standstill where it is there but not actively getting any worse.
I cannot be thankful enough for the love we have been provided. I know that I get support for myself and him from friends, family, and support groups. My work has been stellar, and his work has been so accommodating. I know that this journey will not be over for years. I don’t know if he has quite reconciled that fact. I am hoping for NED scans from here until eternity.
Support and Condolences
I do want to extend my emotional support to every other esophageal cancer warrior and caregiver. So many are having struggles beyond what my hubby experienced. So many are diagnosed too late to have surgery as an option. Too many have become angels all too soon. I want everyone who is having their own fight that I am always available to talk, I offer emotional support and whatever advise or tips that I am able to. We all need support sometimes.
Updates to this journey later. If there is anything major, I’ll update sooner than later, otherwise, I am planning on updating again around day 75 post op!