May 07, 2014 - 10:17 pm
I have not been here for nearly two years, but I am so HAPPY to see a lot of old names but SAD to see new ones.
I thought I would stop by and post an update on my husband, Tom.
The story starts like any other - weight loss and anemia late 2010 --> check up November 2010 --> diagnosis December 2010
Tom (37 yo at the time of diagnosis) started his treatment at MSKCC with Dr. Ilson. He had chemoradiation. He got cisplatin and irinotecan once a week for 8 weeks with a break in a middle. Daily radiation was added after 4 chemo treatments and lasted for 28 days. After the treatment the tumor was gone, but we still decided to go with the surgery. Tom had a robotically assisted MIE at MSKCC in New York on May 17, 2011 performed by Dr. Rizk. The hospital, the doctors, and everyone else we really amazing!
The recovery was long. Tom was low on energy, tiered, in pain after each meal. This pain is likely what caused him loss of appetite. This state became his new "normal'. Until a year after surgery, in May 2012, he ended up in the emergency with hernia. Since his esophogus was largely removed and the stomach was pushed up, inestines migrated through the incision to the chest and caused pain. He has been living with this hernia for the whole year! He had a MIE repare surgery and felt much better after that. Not quite 100% but in the 80ies.
Guess what? A year later, in May 2013, he is back at MSKCC doing a endoscopy test. After drinking a bucket of that stuff for the test, he called a nurse and said that he is in pain and it feels like hernia. The doctors said it was probably just gas and stress on the stomach and sent us back after the test. Same night we took a taxi to emergency room. And yes, he had another hernia. This time, Dr. Rizk did an invasive servery with a lot of cutting around the hole in the diaphragm where stomach is to create scar tissue to fill in the void and prevent anything passing through.
This time, it worked great! Tom finally realized what "noramal" is. He eats well, not huge portions of course, but good size, with appetite, and pretty much everything he wants. Even ice cream that he could not eat a year ago. Even cookies! Indian and thai food! There are a few things that he cannot digest, but he is not suffering from the loss - coffee, beer & wine, tomatoes in any form, and of course nothing super y that even healthy people cannot always eat.
It is May 2014 now, and Tom is back from and emergency unit... But this time the issue was minor - looks like he started developing a blood clod, but it was caught early and he is only taking some pills.
The most important thing - 3.5 years after diagnosis and nearly 3 years after surgery, Tom has no evidence of desease. He is feeling great. He is skinny, but cool skinny, not scary/sick skinny. He quit his job just before the diagnosis. Open his one-person architectural practice during the treatment, end of 2013 he went official and rented an office, as of now he is running his own firm with employees (plus our dachshund in charge of office security and food supply). We are hiking, travelling, going out with friends, and living happy lives. [FINGERS CROSSED]
Tom just asked what I am doing, and I said I am posting an update about him. He said "Oh, just tell them I am fine. No, tell them I am awesome". Here you have it. I read somewhere that there has been more progress done in medical field between 2008 and 2014 than in 50 years before that."
Stay strong, stay negative (if you know what I mean).