My husband diagnosed 4 weeks ago -Esophageal Cancer- HELP
Hello,
I am looking for advance and success stories to help us navigate this difficult journey. My husband, just 50, started this journey not feeling in August, dropped about 20 lbs and started throwing up while eating. He scheduled an endoscopy and colonoscopy and in the office they told us he had a bleeding mass in his 3rd quadrant. That day we got a CAT scan which revealed a spot on his liver, thank god it turned out to be a hemangioma (blood vessels) - the PET scan revealed it had not metastasized to his organs, so we are in a window of cure as the doctor stated. We are working with a team of doctors at a Pennsylvania a Hospital in the thoracic surgery, division. All the doctors seem wonderful, and have great reviews and accolades. He had a feeding tube placed last week, which landed us in the hospital for four days as they want it to monitor his feeds, and he had his port placement this week. To say the least we have been so scared and a roller coaster of emotions. My husband still hasn’t cried in front of me. I’m 44 years old and I’m scared shitless and I consider myself a super strong. This is definitely the hardest thing I/ we ever had to face. My husband was still eating soft food like mashed potatoes, soups, yogurt, smoothies, and pudding but yesterday he started throwing up while eating a smoothie so it’s been hard to get to the a lot at 2200 cal that the dietitian wants him to eat. Were using the feeding tube at 100 mL per hour. He gets a lot of cramping in his stomach after the feeds and we tried feeding at night but he’s uncomfortable on an incline. I can’t sleep, which is always had sleeping issues more over. He usually sleeps on his stomach and now can’t do to the port in the feeding tube. Last night he tried to take an Tylenol and it got stuck in his throat and threw up. We start chemotherapy on Friday of this week, and I’m scared that due to all the complications with getting him allotted calories already that this is going to fail. The plan is that he will be doing chemotherapy for two months to shrink the tumor and hopefully attack the lymph nodes that are lighting up on his pet scan if all goes well, he would move to radiation for 6 to 8 weeks targeted on his third quadrant of his esophagus, if that goes well, he would move to surgery after four weeks of rest. They prefaced the post up with about 12 weeks of recovery and about 1 to 2 weeks in the hospital. They placed a feeding tube preemptively because he had lost so much weight and they wanted to keep his caloric intake up and didn’t want to have to operate during the treatment which would altar in delay possible outcomes. The doctors didn’t tell us the stage of the cancer but they said it was aggressive and therefore they’re attacking it with an aggressive treatment and someways. I’m glad we don’t know the staging. We are so numb and feel like our lives have been ripped out from under her feet. I can’t stop crying uncontrollably I took leave from work to care for Joe and to deal with my own emotions and Joe has not been working since he found out. On top of the health stress. We also now have financial stress and worry. I’m just wondering with all of this what to expect. Although we are so scared and so worried I’m grasping desperately to Hope.
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Hi Don, how long did you have chemoradition? My son is having 6 weeks of it.this is 2nd week.. has a J tube. Hasn't used it yet and he has been going to work.
So glad ur doing so well.
Golfngal
I had chemo and radiation for 28 days 5 days a week.
When I lost appetite, the jtube helped keep me nurshed.
Let us know how it goes?
Don
Your story sounds alot like ours. My husband just turned 50, we had just purchased our dream home and all that fun life stuff. Life was good. My husband's cancer was caught on accident, thankfully! He was having heart issues and it was caught on a scan. Life turns around pretty quick. My husband went through chemo and radiation and got covid in the middle of it. He was able to have his surgery, thisbwas all during covid. I was not allowed to be there. It was absolutely horrible. He had 2/3rd of his esophagus removed and a gastric pull up. He was in the hospital for 12 days. It took some time for him to recover. He had issues with scar tissue but that was resolved with a number of endoscopies to stretch the tissue. He has lost about 100 lbs. He was in and out of the hospital about every other week for 9+ months. We finally figured out he was aspirating on his stomach acid. He has to pretty much sleeps upright so this dosen't happen. It's been a rough ride for a bit BUT he has been cancer free for 4yrs and 1mnth. Life has finally started to.turn back around. You will get through it. You will find your new normal. Just have faith, patience and remember to take care of yourself as well. I'm sure your outcome will be completely different and everything will go smoothly and just as planned. Good luck with everything!
I'm so sorry for what you're going through. It's such a difficult diagnosis and treatment plan to face. You will get through it however, but it takes takes time. I'm 8 months since my chemo and radiation, and 5 months since an Ivor Lewis esophogectomy. I had challenges along the way, but am feeling good and almost back to my new normal. My wife is the biggest reason I'm recovering as well as I am. She's been a rock throughout. Regarding the financial stress, did you speak to your social worker? They might be able to point you to resources that can help. Hope Lodge provides free housing during your stay if you aren't local. It's a great facility sponsored through the American Cancer Society. Best to you and your husband.