OK, this is the beginning of your journey together through this. My husband and I just went through this and now my husband is cancer free and doing very well. Last April 2023 he was diagnosed with very similar cancer like your husband. His was a stage three, which I believe that would be your husband stage, with a 7.8 cm tumor , adenocarcinoma, at the distal third of his esophagus. Within seven days of that diagnosis by the gastroenterologist, he took my husband in to put a PEG tube in him. That saved him a lot because he had lost so much weight. My husband also ate only the soft foods that he could swallow because everything else got stuck or he couldn’t swallow anymore, he would have to vomit it up because it would sit right on top of his blockage from the tumor. When it got worse, we got him on homecare for tube feedings with a pump. He was so glad to have the pump give him 50 cc an hour of tube feeding because he was tired of pushing it in 4 to 6 times a day.
He also started the radiation simultaneously within 3 to 4 weeks of his peg tube placement. He actually felt fine ( piece of cake he would say) throughout this therapy in the first four weeks. The last two weeks I saw him plummet. He looked terrible, felt terrible, became nauseated, and did vomit occasionally. He aged in looks tremendously. Hair fell out and what was left turned into white peach fuzz. The Lord kept him through it all though. . He would have times where he had to lay flat for his radiation And would stop it in the middle to get up and throw up. But he made it through the sixth week finally. It took about two more weeks of “resting from the therapy “. He got dehydrated and I took him in three times a week for IV fluids in his Mediport at the cancer center to help him not get dehydrated. He would put water in his peg tube as well to make sure he got some fluids. It just wasn’t enough because he would get tired and nauseated. This was all done at home and I, being a nurse, could do it for him when he wasn’t feeling strong enough to give him his feedings. Otherwise, when he was strong enough, he did it himself.
Everything started to get better, and he felt much better after that, and recovered enough and prepped for his esophagectomy which would have taken place four months after his original diagnosis. During the preop test, a cardiac stress, test and angiogram was done and found that he had five blocked heart vessels. He’s only 57 at the time and had no symptoms! But I know the Lord took him through that, because if he didn’t have that done, he would’ve died having the esophagectomy. So two days after that angiogram, he had a quadruple bypass. This was all done at UCLA. Medical Center a Phenomenal place for their skill and expertise. After seven weeks of recovery and being able to walk 4 miles a day surprisingly, he was ready for his esophagectomy. That was an 11 hour surgery, but very successful. It was harder for him to recover from this one than the bypass surgery. But he did have two major surgeries back to back. All the cancer was removed and 16 cm of his esophagus was removed,. His PET scan was negative just 2 weeks ago.!! They are so impressed with how well he has done. He has maintained his weight, although 35 pounds lighter than before his cancer. He is working out at the gym and or walking 5 to 7 days a week and gaining stamina and feeling good. Walking about 2 to 3 miles a day. He is eating every two hours like he should, small meals, mostly high protein, and no added sugars or wasted calories. He’s being very strict on himself and doing a good job of it. Cancer free is the biggest celebration for us. No tubes no lines no ports.!
I had FMLA so that I wouldn’t lose my job at the hospital but I did not get paid FMLA because the California EDD denied my claim and would not answer the phone when I called approximately 100 times over a two month span. One time they answered and said they didn’t have the paperwork that I sent in “certified mail”. I resent it online like they asked and then they would never answer the phone again from me again. I lost over a months wage and I sent everything in that I was asked to. Everything is paid up and paid off finally, which is great because we had really good insurance and because, frankly, the Lord took care of every detail. We had our whole church, praying. And I will pray for you both.
Journal everything if you can. Every day how he is feeling and doing. But phone calls you make to advocate for every appointment. Remember to call for any cancellations to expedite appointments if you can. From the time he was being seen for symptoms in March 2023 to his surgery on September 28 of 2023, I prayed for expedited appointment so that he wouldn’t have to linger and wait around for their appointments. Every doctors appointment or test, you can call each morning between eight and nine and see if there’s been any cancellations that week and get your husband in sooner. I would say 80% of the time that worked for us.
This is a journey for sure! Normal everything including numbers and the names of people you talk to in each office so that you can get a clear picture of what you’ve done and reference for everything if you need it later. You need your friends and you need prayer from those that will walk alongside you through the journey. My husband‘s cancer is gone and I give God all the glory for that. The doctors are calling it a miracle for him what he’s been through. I pray the same for you your husband! ❤️🙏
Blessings, Patti