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Dad passed away Sunday - Final moments

Jenny32's picture
Jenny32
Posts: 23
Joined: Oct 2011

I know I haven't posted much of my journey along the way with my father over this past year but I have been visiting this site and reading from time to time. I think I spent so much time worrying about my father's condition that when I was finally home, I didn't want to get on the computer and think about it anymore. I hope that what I share here doesn’t offend anyone. What I am about to share is my personal experience about the final stage of my dad's journey and maybe it may help someone in some way.

My father was diagnosed with Stage III Esophageal/Stomach Cancer in early October of 2011. He passed away at home on February 26th 2012. It is so hard to believe how fast this year went by with him and it is even harder to believe that I will be speaking of my father in past tense from here on. I can't wrap my head around his permanent absence from my life. We both share birthdays in April; he would have been 64 next month as I turn 33.

His only PET scan was at the time of diagnosis and it revealed that there was no apparent lymph node involvement and that his tumor was 12 cm stemming up the esophagus and down the stomach at the junction. From the beginning, we were told that even though he was stage III that his tumor was inoperable based on his state of nutrition. His weight was just barely over 100 lbs. The doctors also feared that his lungs would not be able to handle the surgery. He was experiencing a severe cough early on and that cough only worsened in the end. He eventually was treated with antibiotics for pneumonia and when it didn't clear a month later, I had to have him rushed to the ER for shortness of breath. Everything went so quickly from there. His oxygen levels were low but stabilized when he was put on oxygen. He had fluid drained from his left lung and then a chest tube had to be inserted because the fluid kept coming. The doctors discussed a chest tube for fluid that had also developed on the right side but my dad didn't think he could handle the pain of two tubes. Next he required a blood transfusion and it was mentioned to me that the cancer may have spread to not only his lungs but possibly his bones. They suspected it had spread to the lungs because there was no other probable cause detected in the fluid.

13 Days after being admitted to the hospital, the fluid subsided on the left side and they were able to remove the chest tube. I saw this as a promising sign. The doctors also informed me that they would be able to remove the fluid from his right side via parenthesis rather than inserting a chest tube in on that side too. I also saw this as promising. But the very next day things took a turn for the worse. His breathing became labored and his blood pressure and oxygen levels dropped. I was informed that his chest x-rays now showed an obstruction in one of his bronchial tubes on the left side. They weren't sure if it was a mucus plug or a tumor but they wouldn't be able to do anything about it without sedating him and placing him on a ventilator, at which point they feared that he probably wouldn't survive the procedure. We were basically told right then and there that either he "goes the natural way" or he "goes out the hard way". We had to explain this to him and he chose the natural way and it was then arranged for him to be brought home just an hour later under the care of hospice. By 8:30 pm Saturday he was home in his own bed and by 10:30 am Sunday morning February 26th my dad took his last breath with my sister and I by his side.

When he was admitted into the ICU, I forced myself to have the "talk" with him. I had to know what his wishes would be for his remains and so we discussed cremation. I also told him I had a special request for him, I asked him to please visit me or give me a sign that he is in a better place and of course he agreed to try if it was at all possible. And then he said he also had a request for me and the family, that we didn't mourn him long. That was a tough conversation and of course I was in tears. But at that point we still hadn't come to terms with the fact that the fight was truly over. No matter how bad things seemed, he and I always held out hope that things would turn around for the better. He wasn't ready for his life to end. Even in his final moments he clung to life so tightly.

He was brought home around 8:30 pm on Saturday evening and the nurse suggested that he take morphine and Ativan a couple hours later to help him relax since he was so anxious and was having a terrible time breathing. In my heart I knew that the meds were going to take his life because his blood pressure was already so low but another part of me hoped that it would just allow him to breath a little better and get some rest. I just didn't want to see him suffer another minute. I could tell he was fearful of letting himself relax because I think even he knew it was the end for him. In one hand he clutched my hand and in the other he clutched the remote to his bed. We told each other how much we loved one another. I kissed his cheek and stroked his face and told him it was okay to go and not to be afraid. He said he wasn't afraid and that he would try to visit me like he promised. It wasn't long before he was no longer responding to my presence. He was just breathing hard and intermittent throughout the night from there on out. I stayed up with my dad through the night holding his hand and watching him breath, afraid that every breath he took would be his last. The nurse informed me around 1:30 am that his time was approaching and I cried and cried but he still continued to breath. It was around that time that I felt a tap on my shoulder and turned around to see if it was the nurse. She was still sitting in the corner of the room and nobody else was there. I can't explain what it was and I am not one to have those types of sensations or experiences and I was left questioning myself and the possibilities of what I may have really felt. I will never know I guess.

When the morning came, around 8 am, the nurse said she had never seen someone enter that breathing pattern and hang on for so long. She felt he was hanging on for someone. Sometime around 10 am my sister called and said she was on her way. I told him to hold on for her, that she would be by his side soon. I remember telling him I loved him again and I watched his face for any sign that he could hear me. I saw his tongue move like he wanted to say something but couldn't. He wasn't able to respond but it was not long after my sister arrived that he passed on at 10:38 am. The image of my father passing away will forever be engrained in my mind. I watched him take his last breath and then I saw the blood stop pulsing through his veins as his heart stopped beating. All I can say is that I am so grateful that I was able to be there in that moment for him. I know he found peace and relief from his suffering. Even though he was unresponsive to his surroundings throughout the night, I watched his face closely for signs of life and he often raised his eyebrows in amazement and smirked like he was happy about something. I would like to believe that he saw something amazing in those hours and that he was happy about what he saw. Reflecting back on those final moments, I realize that I have lost an amazing man and yet I gained a greater faith through this experience. I will see him again.

In closing, I would just like to share my advice to caregivers. I cannot express enough how important is to really cherish every moment and make sure to have those “end of life” conversations, no matter how tough it is. I am glad my dad and I discussed his wishes and shared plenty of “I love you’s”. I think I will always feel like there was more to be shared but at least I know that he knew how much he meant to me. My sister passed up opportunities to have those moments with him. She will probably regret it her whole life.

If I could do it over again, I would have spent even more time with him going through his personal effects so that I could understand what every one of his keepsakes meant to him. I would have asked him what some of his favorite songs were. And I would have asked him what it was that he would have liked others to remember about him, and if there were any important things that he would have wanted me to have shared with specific people. We were just never ready to face the reality that was right in front of us. Talk to your loved ones and hang on to their every last word. Maybe even keep a journal to remember all that you can because once they are gone, you will try to recall every last word and every last memory and wish you wrote it down.

Much love to all!

God, give us grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.
Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace,
Taking, as Jesus did,
This sinful world as it is,
Not as I would have it,
Trusting that You will make all things right,
If I surrender to Your will,
So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.
Amen.

Please feel free to contact me on facebook @ www.facebook.com/jennycurcio

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Wow...

Thank you for sharing such poignant personal moments. You have truly bared your emotions to help others.

I'm grateful you had the time with your dad that you did. Sounds like you made the best of the time available.

Appreciate your insight and thoughts. Our prayers are with you and your family.

Hugs of strength to you,

Terry

Mazj's picture
Mazj
Posts: 42
Joined: Oct 2011

Jenny, that was so brave of you. I cried with you when reading it and felt your pain. You have already helped me because you have answered a question I was too afraid to ask. You handled this delicate subject with maturity, with thought for others and with such depth of emotion. It was beautiful to read. Thank you so much and continued strength to you.
Marilyn

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

Jenny,
What a beautiful and honest sharing of what we all know is a very difficult journey. You have inspired us to participate in the dying experience. We are all going to have to face that reality. Those of us with EC have caregivers that I know are feeling the same way as you. We only wish we all have the courage to share those precious moments together.
You have inspired me to visit my 93 year old father today and have a discussion. Thank you for sharing and I will pray for your family. God Bless....

Gerry S
dx Feb 2010
Surgery Mar 2010
chemo
Stage 2N1M0

sangora
Posts: 218
Joined: Mar 2011

I remember your first post and how your fear and anxiety came thru in your writing. Reading this post it is evident that you have grown and learned thru this experience. Your dad is a lucky man to have you as a daughter. You took care of him til the very last moment. You are truely blessed and should feel no regrets. God bless you and keep you strong thru the healing that will come. Sam Stage IV

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I'm so so sorry. Your account was so moving and so filled with love. I admire you for your strength and courage. Your dad was truly blessed to be loved by you!

paul61's picture
paul61
Posts: 1104
Joined: Apr 2010

Jenny,

Thank you so much for sharing this deeply personal experience with your Dad. How wonderful that you both had time to share these very important thoughts and feelings. I am sad your Dad is gone but happy that he is now in a place were the suffering of cancer is gone.

Best Regards,

Paul Adams
McCormcik, South Carolina

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

Jenny -
I'm s sorry for your loss. I know how difficult this is and pray that you will find peace and comfort in your many memories.
Mary

Heeran's picture
Heeran
Posts: 173
Joined: Aug 2011

I'm in tears as I'm reading your post. Looks like your family had a very long journey. Thank you for sharing and allow me to off my condolences. My mother was diagnosed last Aug. with stage 3b and it's been a long journey but she was strong enough to have the surgery. I wish your family peace and I'm sure your father will give you the sign very soon that he is in a much better place.

monica_sss
Posts: 57
Joined: Dec 2011

Jenny,

Thank you so much for taking the time to write this account of your Father's final moments. I was in tears reading this also. I am my Mother's caregiver and witnessing all that she has been through is so difficult. I'm so sorry your Dad is no longer here to hug, but he's with you in so many other ways.

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Hi Jenny,
I am another daughter, my dad passed Nov 8th of this year after about a 2 year battle with stage 3 EC. He passed very similiar to your dad - fighting so hard the whole way & with lung/oxygen & breathing struggles.

I knew it would be hard to loose him, but did not know how hard. It's going to be 4 months & I am still so sad when I think of him-I know he's with JEsus & not in pain, I will see him again, etc etc--I just can't help it. It was hard to read you post as it is all so fresh as I'm sure it is with you. I agree with you your note to caregivers...well said. My mom was the caregiver & gave every last bit until he needed her so more. She said she realized after he passed - when we were mourning- that she could have gladly cared for him forever---but he really would not have wanted to continue on in that state. We had to let him go. It is the hardest thing to do.

My dad went home with the grim reality much like your dad. They were not sure he'd survive the 3 1/2 hour ambulance ride home (& neither did he as I found out later), but he did. All 13 of his grand kids, all of us 3 kids & many others got to spend that last weekend with him. I made the 11 hour trip as did my kids later with my husband. My brother came from 9 hours away with his kids. HIs oldest got a special grant form the army to be there! Although not physically well, he was alert & actually happy. He was on oxygen, suction, tube feedings, morphine, etc (with Hospice). He rested whenever he wanted, but if someone peaked around the door to see how we was & he was awake--he became a different person, invited them in, shook their hand, joked, smiled.... it was a wonderful sight...even though heartbreaking. He did not want to go-his body just could not continue. He was a volunteer firefighter so many of the guys came by throughout the weekend. So many nice memories from that weekend, but so hard to see him deteriorate before our eyes. Even though they didn't think he'd make theThursday ambulance trip home-he survived through the weekend. I had always wanted to be with him when he passed, I am not sure why-I just did. Unfortunately, it became painfully obvious that he just did not want to "let go". He would talk about "in a few weeks" & such. I said to my mom & a friend that it seemed "that the longer we (out of town kids) stay, the longer he'll hang on." They agreed. My husband & 4 children & brother & 4 kids left Monday AM & I truly did not know what to do. I prayed about it & realized I had to go home, to let him go--but selfishly really did not want to. I thought maybe I heard God wrong. I struggled with it all morning. I had been away from my immediate family alot backe & forth the last 2 months, but they were doing fine & I just wanted to stay... I eventually knew I had to say good bye. When I told him I had to go--he looked at me a second & proceeded to tell me that if I got tired - that I could just pull over & take a rest. HE was a big safety & seatbelt guy at the fire dept.

THAT goodbye was the hardest thing (on many levels) I ever had to do in my life.

Later that day he said he was done and asked all tubes except oxygen be removed. He passed the next morning.

God Bless all affected by EC.
Kim

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

Hi Jenny,
Your story moved me to tears. Your Dad was so lucky to have you by his side throughout his struggle. Watch for those signs you asked for, Jenny. They'll appear when you least expect them and bring a tear but also a smile.
There are several of us on this board who are also on a special facebook group called CSN Esophageal Cancer Group. It's a nice way to stay connected with the wonderful people on here who have been and continue to be so supportive. Hugs to you, Jenny.
Rita

Guigna
Posts: 71
Joined: Feb 2012

your dad went out well, and I'm glad he gave you a tap.

I am sorry for your loss

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Wow - thank you both so much for sharing. Your stories certainly bring back the memories of losing my dad. Your fathers are surely proud of each of you.

Thank you again for sharing - you have touched us all.

Here's to the angels in Heaven watching over us!

Judy

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

So sorry your dad has passed. I remember my moms final day. All day she was smiling and making sweet face expressions. I told everyone that came in, she was seeing heaven and the angels. I truly beleive this and beleive it of your dad also. It gave me a lot of comfort seeing her peace and knowing she would be happy and well as she passed from this life.
My thoughts and prayers are with you,
Sandra

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

Wow, what a moving story. You are truly an inspiration. Thank you for sharing.

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