We have been party to an health roller coaster for my husband. It’s been a swift journey that may have an end in sight, but there is no real defined end to everything. This is a journey that has brought us into a new fellowship of people, a journey that no one every wants to have to go on.
My husband has cancer.
This all began, officially, around mid-April this year, 2015. I suspect it began earlier, but I was not made aware that anything was wrong until that point. He told me that he felt like he was having problems swallowing. It felt like food was getting stuck. He had a primary care appointment upcoming at the beginning of May. Asked if he wanted me to try and move it up, but he declined. Having worked in Otolaryngology, I told him that he should make sure that he mention it to his PCP and he’d probably be ordered a barium swallow or modified barium swallow test. He was ordered the MBS which was done on 05/19/2015. There was an “Implication of esophageal dysmotility” and they suggested he see a gastroenterologist.
Somewhere along the line the message fell through and no appointment was scheduled. His symptoms began to get worse, so I began to hound the PCP. We need a GI appointment. This is not something we can wait for an appointment to talk about a referral to then wait for the referred appointment. They listened, and set an appointment for the end of August. To my mind, and his, that was unacceptable. I kept pushing, and he kept asking me to push harder, to get a sooner appointment. I was always checking for sooner times. Every time anything opened up, I moved the appointment. It was moved three times, and he was seen on 06/30/2015.
The GI doctor was very accommodating. He set him up for an upper endoscopy which was performed on 07/15/2015. The plan was to check out the anatomy and probably dilate his esophagus. Routine. No worries. Post procedure, we were told there was no dilation done. There was a stricture that was encountered so severe that the scope could not pass it and see into his stomach. Too severe to be able to dilate it. They took a biopsy of the area. We were told that it was probably nothing, they just wanted to make sure, and we’d re-visit treatment options based on what the biopsy showed.
The next day, 07/16/2015, he got a call that the biopsy results were in, and could he come into the office the following day. The time didn’t work for him to go in, too late in the day, but he would try to get there. They called him back, could he come in before clinic opened? We knew then. He agreed to come in early. Doctors don’t typically come in before everything else to see you unless there is a problem. Friday, 07/17/2015, we were informed that he had cancer.
Adenocarcinoma of Esophagus
We were floored, but it was not unexpected with the speed in which they brought him into the office. We were told that the oncology team that would handle his cancer meets only on Monday. They didn’t know if they could get him in for the coming Monday, or if we would have to wait an additional week. Luck was on our side, and we met with his oncology team on Monday, 07/20/2015. Everything began to move incredibly quick after that Monday. He had to have a PET scan to try and get a clearer staging as an esophageal ultrasound would not work. They are treating him as a stage 3, but think he may be stage 2, difficult to tell. They know he is not, right now, stage 4.
A brief hiccup with the radiation oncologist at the hospital site closer to our home (incidentally where I work) had everything being set up at the hospital site where we originally met with his team (the main site to where I work). We did not seek a second opinion. The rate at which his symptoms were worsening, and the treatment plan laid out before us with an end goal of cure, gave us enough comfort to stay with the original team and location.
Set to go, I broke up this whole process into four phases:
Phase 1 – Treatment
He went through 5 and 1/2 weeks of chemotherapy and radiation. The radiation was every day, Monday-Friday. Chemotherapy was once per week to help the radiation. We had a PICC line placed for the second chemotherapy, which only lasted for that treatment and the following treatment before removal. Him sweating was not agreeing with the adhesive of the occlusive dressing and causing major skin irritation. He also had a j-tube place toward the end of August to help manage his rapid weight loss. There was a brief moment when the radiation effect could be seen in improved swallowing, which only lasted a couple of days before the inflammation kicked in. We were so happy when the radiation ended. He did only complete 80% of the chemotherapy. The last dose was never administered due to him being sick. Everyone was okay with that. We’d like 100%, but 80% was sufficient.
Phase 2 – Recovery 1
This is where we are now. It took a solid 2, almost 3 weeks before the radiation inflammation eased off enough for him to be able to eat well. He fought to eat prior to that and actually managed to consume enough to warrant removal of the j-tube. His oral consumption was causing leakage around the tube that he couldn’t tolerate. That was very easy, and he’s been slowly able to eat more and more normally. There are still plenty of foods off limits, things he will not even try, but he has put back on some of the weight he has lost.
I’m currently back in countdown mode. As of right now, there are 22 days until his surgery.
Phase 3 – Surgery
Everything we’re doing is in preparation for major surgery. They will aim to do this minimally invasive, but it is something that could turn into open surgery if there are any complications. They will remove his esophagus from a point above the cancer and the top 3rd of his stomach then join the two. (more information on procedure) They’ll also take lymph nodes to check for any spread. It’s all about clear margins. They tell us the surgery is going to be between 8 and 10 hours long. He’ll come out of it with all sorts of tubes and IVs, which is going to irritate him to no end. He’s mainly worried about post surgical pain, as it is so major, and the first time the j-tube was placed he had more pain than anticipated.
Phase 4 – Recovery 2
This will be the most arduous time. He’s hoping for a 1 to 2 month recovery. I am not trying to dissuade him of that. I want him to fight. I think he knows it could be longer, but he wants to push himself as hard as he is able. I am not even looking this far, yet, myself. I am only taking everything one “phase” at a time, so that I can be on an even keel to help him.
#cancersucks #beatcancer #husbandismyhero
This man that I love has been absolutely amazing throughout all of this.
He does question why this happened to him.
He has not gotten angry at the world or depressed.
He simply wants to beat it.
As a nurse and caregiver through all of this, I have had to learn how to step back and just be his wife. He does not always need me as a nurse. He only wants my support through all of this, and for me to keep an ear out to make sure no one is doing anything egregiously wrong. I have only had major meltdown. My stress does show on my face at times, so I’m enjoying having this time with him where everything is relatively peaceful.
More later! Thank you for reading.