As an EC patient who used the internet extensively to learn as much as I could about my disease I wanted to make sure I passed on as much useful information to other patients as I can. There are a few things that come to mind now.
First of all, don't be discouraged by the results or side effects of initial chemo treatments. There are numerous ways to deal with the side effects. Talk to your doctor. S/he will probably have a remedy. If you don't get positive results from the first chemo regimen don't give up. There are others out there. Realistically, this disease usually cannot be beaten by chemo alone. Surgery is probably your best chance if you are in early stages. But chemo can buy you time. It can be precious time. And who knows, it may be enough time for science to find a cure.
The biggest disappointment to me was the Sir Spheres. I expected that treatment to put an end to the liver tumors. It did not. In fact I think it is the liver tumors will ultimately kill me.
The biggest surprise to me has been the ascites. I've read a lot about this disease and about other patients and had never heard of this happening. It has been the most difficult symptom to deal with. Since I've had it I actually met another EC patient who suffers from it. He happens to live about two miles from me and goes to the same oncologist. But when I first started to be affected by it I didn't know anything about it. Unfortunately, the more I learn about it and the longer I have it the less I like it. It is usually a sign of disease progression. It usually never resolves. It is extremely uncomfortable. It sucks.
Fight as hard as you can and as long as you can while still maintaining a decent quality of life. We are blessed to be given the time and the inspiration to try to mend parts of our lives that need mending. But when the time comes it is because God wants you by His side. And there is no better calling.
Every patient is different. Your journey will be unlike all others. Wherever that journey takes you, whatever you encounter along the way........
Carry on.
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Well said, Jerry. You could probably write a book about all you've learned. Thanks for sharing your thoughts and experiences. I hope that you'll continue to find joy in every day of this life, and joy over-the-top in the life to come.
ReplyDeleteJerry, your situation nags at my heart. One day ago today...April 1st, John met for the first time with hospice. Only 22 days later would he lose his abiltiy to walk, when the bone snapped. Two years ago...exactly to the day, he was back in Salt Lake for a Esophagectomy follow up, and the doc pulled out his feeding tube. Remember that? I know you remember that. Anyway...I guess I'm checking the calandar....thinking of John.
ReplyDeleteRemember Jerry...you've done much better than John did. You are going to keep on keeping on. I know your situation sucks...but you are so strong. Much stronger than John was. P.S.... you are my hero. I love you.
Tracy Hawker
Jerry I want you to know that through your blog and getting to know you I have learned so much and it has been so helpful not just to me but to Robbie as well. YOU HAVE MADE A DIFFERENCE!! Thank you so much for helping us!
ReplyDeleteHi Jerry Jim from England, you have put up one hell of a brave fight against this horrible desease whilst living a life worth living. You are defying all the odds getting so far & through this journey unselfishly found time to write about your experience to help others. You are an inspiration my friend, GOD Bless
ReplyDeleteregards Jim