1,000 days one at a time

by Robert C.
(California)

On November 17, 2014 I was diagnosed with Stage IV Pancreatic Cancer.

The cancer had metastasized to my liver. I had a large tumor in the center of my pancreas and 7 or 8 growths on my liver. Three days prior I had a liver biopsy, the day of mine and my wife's 33rd wedding anniversary.

The biopsy confirmed the worst of our fears. My wife and I and our 26 year old daughter, who had rushed home to be with me, sat in my oncologist's office and got the news. We were told that the only option they could offer was chemotherapy. I could not have surgery or radiation as the cancer was too pervasive at that point.

My CA19-9 was approx 4600. We were recommended folfirinox and were told that the best case scenario would be that it could halt the progress of the cancer and possibly even put it into retreat for a short time but at some point it would no longer work.

My doctor told me my illness was terminal and that there was no known cure. She was so wonderful the way she broke the news to us. She told me some people don't want to hear their prognosis and would rather just deal with it as it came. She told me she would give it if I wanted, but warned me that she would give me nothing but the truth, and that she did not believe in miracles. I looked at my wife and daughter and told the doctor that I wanted to know but I did not want my wife and daughter there with me when she told me. My wife and daughter said they both wanted to stay if I was going to hear it. She asked me if I had read any information about the cancer and I told her I had. She asked me what I thought would happen. I told her pretty much what she had already said in regards to there being no chance of a cure and the best I could hope for was some more time with the chemo. She said "you know."

I asked the doctor if there was any chance that I might feel better for a while and be able to enjoy myself for some of the time maybe for at least a few months. She responded yes. I asked her if there was any possibility that I might live a few more years and she looked down and shook her head no. She said I would be fortunate to have more than a few months.

This was the culmination of months of misdiagnosis and searching for answers for why I was in so much pain. It was the worst news in a succession of nothing but bad news.

It seemed unreal as we left her office. I remember stopping at a grocery store and seeing people and hearing talking and laughter and feeling like I was some kind of a ghost, like I was no longer a part of life.

I know now I will be a part of life as long as I am here and will be a part of the lives of those who care as long as they are here. I remember telling my wife that everything that had happened for months had only been bad and had only gotten worse and I truly believed that before all was said and done there would be some good things happen. I don't know if I really believed that but I wanted to say something to try to make us feel better. I could have never known how prophetic those words would be.

My chemotherapy had results beyond what could have been hoped for. After 11 hard fought rounds of treatment the tumors on my liver were no longer visible and the tumor on my pancreas was barely visible. My CA19-9 was now 19, but the chemo had taken it's toll and I was weak. I think I still struggle with the collateral damage to this day but please don't think that is in any way a complaint. I know how lucky I am. I know how many people would give anything for their loved ones to be "struggling" as I am.

I am in no way sure why I have been given this gift of survival. I don't think it is of my own doing, I am humbled by it. I don't know what was more painful... my cancer or having to live day by day, minute by minute with my fate hanging over me.

People have told me my doctor was wrong and that she was too negative and that I should find someone more hopeful and positive and she should have never said those things or she didn't really know. I appreciate their feelings but I know she was not wrong she told me the reality of what this disease has done to so many before me and what could be hoped for with the existing treatment. I appreciate her for what she told me and not trying to build up some hope where it MEDICALLY wasn't warranted. She is a medical doctor with a great deal of experience with my disease.

I will even say that my acceptance of that reality, which was not easy, may be part of why I have been able to survive this long because it was only at that time that I stopped dwelling and searching and hoping that somehow I would be cured and I started focusing on just feeling as good as I could right now and enjoying that to the fullest and let that "truth" just be there but not overwhelm me.

I somehow got in the moment and when the moments began to bring me so much happiness, I found a great desire for more of those moments.

1,000 days did not seem worth even hoping for, but one more moment, one more good time, one more day seems very realistic and one more day somehow became a thousand.

I pray and hope for good times and happiness for all who suffer or have a love one who suffers or has lost someone one more good time for us all.

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Oct 18, 2017
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To Allie and her Dad NEW
by: Anonymous

Dear Allie, I have not looked at the website for some time and just today read your comment. I hope your dad is having success with his treatments and is still battling and surviving. My daughter and I have been drawn so very close through all of this. I know your support for your dad means everything to him and inspires him.I have always felt no matter what happens the closeness I have gained with her is something I may never have experienced otherwise and that is a wonderful thing. When the times were toughest for me in treatment I would try to find some time in my day where I felt joy even if just for a few minutes and I often found it just being with her. All the best to you and your dad no matter where this takes you. Robert Capurro

Sep 09, 2017
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Thanks for sharing your story
by: Allie

Hi Robert-
We are at the beginning stages of your story, almost to the point. I'm 26, and my dad was diagnosed with Stage IV pancreatic cancer that matastisized to his liver. It's been two months, and this past Wednesday was his fourth round of chemo. He seems to be responding well, and we are taking one day at a time. Your story gave me so much hope- his doctor told him two weeks ago he maybe has 6 months to a year to live. But... maybe he will be one of the lucky ones who gets to see 1,000 days too! I think your story is great and inspiring and it sure gave me peace tonight! Thank you.

Aug 24, 2017
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Hope for the Hopeless!
by: Jane

Thank you Robert for spreading such Hope! Your story is a light in the dark for so many pancreatic cancer patients... you have shared so well the difficult emotions a cancer diagnosis brings. And despite the odds, you have humbly and fiercely fought back! Your story brings a smile to our hearts...
Continued prayers for 1,000 days more and may that be only the beginning!
Grace to you this day!
Always,
Jane
P.S. Keep us posted as you walk out into the future. moment by happy moment... can't help but think you have been given this gift of survival to spread Hope!

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