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Just Diagnosed - strap me in

JinnyA
Posts: 1
Joined: Jan 2009

On the day of my 51st birthday(12/29), I received the diagnosis of Stage IV regional esophageal cancer. It has been a hellish end to the year. In early November I started to experience a lower leg cramp, been on the treadmill too long to prepare for a 2nd honneymoon with my husband. Treated it as tendonitis - went to the Islands - waited 30 years for that trip. Ate, drank and loved each other for 6 days. My ankle swelled a few times and my leg was still sore but heck I am 50 years old. Came home to Thanksgiving and cooking all day - notice my foot started swelling and went to the ER the next day to see what was up. No broken bones and sent home with a boot. After a week all seemed fine until I was hit with a crampy, painful stomach flu. Two weeks of stomach cramps and eating problems but went to work every day and muddled through. On the 18th of December I finally started feeling a little better in my belly but had a strange muscle cramping on my sternum, went to work - had the afternoon off for lots of appointments but during all that running around, I felt a sever crushing pain in my side up to my neck. Drove myself to the ER and was told I had multiple pulmonary embolisms and it was lucky I came. Admitted for 5 days, lots of tests - during a CT scan they saw some enlarged lymph nodes. Got scoped and was told there was a legion on my esophagus with regional lymph nodes involvement. Biopsies done on legion and 2 nodes confirmed Adenocarcinoma. Been to two oncologist, saw my primary care cry, been told the stats, getting the port put in tomorrow, starting chemo as soon as possible (maybe the week after next) I am entering a phase II clinical trial - and here I am. Thank god for lorazepan. My husband and all my children and friends have been awesome. This is so strange, I was never the one who ever got sick. Ive only been to the hospital 3 times to give birth to 3 kids.

My bloodwork, my physical presentations are all excellent. I have always been the picture of health. I am still recovering from the PE's, back hurts a bit from time to time. My stomach still aches a good bit and I need to constantly treat those symptoms. I am tired and it is hard to not drift off to depression. I give myself 2 lovenox shots a day and The Vycaton is reaping havac with my digestion, no appetite to speak off and that frustrates my husband who makes me milkshakes 3 times a day. He is bound and determine to put 10 pounds on me so I can get through this. I dont know if these symptoms are the cancer, (seems wierd since I never had one before they told me) or just all the stress and worry. I am stapped in for the ride. My daughter is due to have my first Grandchild in 3 weeks, I have so much to live for. I have been blessed with good health my whole life and have always been very active physically and mentally. I am scared that all that is over.

Thank you to anyone who reads this, I needed to document these past 3 weeks of hell. I am just starting on the journey but will be grateful for any advise anyone wants to give.

train-nut
Posts: 101
Joined: Jun 2008

Dear Jinny,

I am a stage IV head and neck survivor. I visit this section because I have a friend who had EC. He beat stage IV a number of years ago and it looks like he just did it again. Play to win! It's not easy but it is very doable. You can look forward to meeting some of the nicest people in the world...your fellow patients and caregivers. When I was first diagnosed I called my Aunt Ginnie (the oldest member of my family) and, as a former nurse, she offered the following: do whatever the doctors tell you but be DAMN sure you do everything the nurses tell you. It proved to be good advice. I wish you and all CSN folks a healthy New Year. Rich P.S. Start making plans now for next Christmas with your new grandchild (lucky me has 4 including twins).

judyloo's picture
judyloo
Posts: 39
Joined: Jun 2008

Jinny - you mentioned that you were documenting the last 3 weeks; many folks had advised my husband who has EC and me that it might make the journey easier if we did journaling from the beginning of the process. I found it incredibly helpful in not only keeping record of what was going on but to validate and express all the feelings I was going through - from shock to incredible anger; I still go back and occ journal and we have made it to the one year anniversary of his surgery (chemo/rt came first). I hope as time has gone past for you that you are doing better, feeling more like your old self and are getting good news on tests/scans and doctor reports. I know first hand how difficult this is and how long the recovery is - it still goes. Hopefully you'll let us know how things are going with you and your family as well; we are members of a very special but growing family of people whose lives have been changed by EC. My greatest hope is that with this Ca on the rise more research into causes and treatments will happen and that word gets out THERE what is happening about this increased incidence of EC to the public! My thoughts & prayers are with you and all the survivors and families here.

marjim
Posts: 1
Joined: May 2009

Jinny, I'm a brand new member here. Your post caught my eye right away. How scary for you and your husband. My husband, Jimmy, was dx. with Stage T4N2M1 on 06/13/08. I agree with the person who said do what the Dr. tells you to do, but MAKE SURE YOU LISTEN TO THE NURSES!!!! My husband's chemo nurses were absolutely the best. They are in the trenches every day and develop a much more intense relationship with the patients while giving the chemo. I don't have any sage advice for you. This is the worst thing that has ever happened to my husband and me, but again it has had its high points. We have spent much more time focusing on our relationship, just being together. Unfortunately, Jimmy received treatment 3 different times, chemo and radiation. Of course, it was all very toxic for him. After chemo from July-Novemeber with 28 concurrent radiation treatments, his cancer spread to his liver. He is now on hospice care here at home and is stable at this time. He cannot do much, but is still up and about. His lifestyle and age didn't help him any. He was a heavy drinker/smoker for 45 years. It sounds like you have a much better chance at beating the "Beast." You have children and grandchildren to live for. So many people do not have that reason to go on. I also go to Cathys EC Cafe.org daily. It is a website that has been around for years and I have made wonderful friends online there. You may email me privately if you want to. Believe me, I've been up and down a million times since last June. Nothing surprises me anymore. I wish you the best.

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

marjim, i too am brand new on this and your reply caught my eye, my husband has been recently diagnsed with cancer and i need someone to just be able to chat with, what caught my eye was what you said about your husband a heavy drinker and smoker, mine too has been also he is only 45 years old and probably has been drinking since the age of 20 and smoking since the age of 18, he could put away a 2 30 packs easy about 6 years ago, and smoked at least 2 packs a day or a carton a week. we are just now going through chemo, and getting ready for surgery next month I too have days that i don't think i will ever get through it or able to i cry alot wishing i could take it all away, the irratiablity is the hardest for me we were both devasted when we got the diagnosis so i am still learning on EC any advice you can give me will really help.

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