My experience with my dad's esophageal cancer

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My experience with my dad's esophageal cancer

by Thru_my_dads_eyes on Tue Dec 11, 2007 12:00 AM

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I am new at this and not sure what to expect. My life turned upside down Friday July 7 2007 when my precious dad was diagnosed with Esophageal Cancer. The doctor's moved VERY quickly and he was discovered to be a stage 4 with lymph nodes affected. The CT scan showed that no organs were involved. He began 42 days of extensive chemo (3 different types) as well as daily radiation at the Jurvinski Cancer Center in Hamilton. My dad caught Sepsis in October 2006 (on his 68th Birthday) and spent 7 days in ICU. We were told to prepare for the worst. He survived but was in excruciating pain daily. He described it as " Swallowing millions of broken glass". It was heartbreaking to see such a fighter suffering so much. I wish I could have transferred all of that to me just to give him peace. He lost about 30 pounds but by December, he was able to get mobile again. His treatment finished and he went for a post-treatment CT to see where things stood. On December 13 2007, we recieved the 2nd worst news of our lives. The cancer had spread to his liver. The doctors were very disappointed, but not surprised, that the 3 intensive chemo's and daily radiation did not stop the cancer from spreading. He looked like a balloon that had just had a needle stuck in it and began to deflate. He was convinced that he had beat it only to be told that it would be our last Christmas and New Year together as a family. He was told that he had 1 maybe 2 months to live. After Jan 1, 2007 everything fell into place. He became lethargic and started sleeping all the time. He woke up one day with a lump the size of a tennis ball on the side of his neck....the cancer was spreading to his brain!!!!! He started to become jaundice and so we knew that the end was near. On Feb 6 2007, a room became available at the Ian Anderson Hospice and so, as a family, we escorted him to his final resting place. He was slurring by that point and falling in and out of conscience. The cancer had QUICKLY invaded his stomach, lungs and brain. The next morning I walked in to find my father had slipped into a coma. He had the Death Rattle, his fingers were turing blue and he was cold to the touch. I new he was going to die that night and my sister and I decided to stay with him. It was my son's 15th birthday and I begged him not to die on that day...Feb 7. My son was his first grandchild and they shared a special bond. It is not surprising to me that he would die on or around his birthday. Dad waited for everyone to come see him and waited for my son's actual birthday to pass and then it happened. He woke up from the coma...opened his eyes like you and I do everyday. He looked at my sister first and then managed to turn to me and look straight at me. You may not believe this, but what I am going to say is true. My dad's face was not his face as a 69 year old man but instead it was my dad as I have seen him in pictures when he was 22. He REGUVINATED and his tumour on his neck was gone, his jaundice was gone and he was alive. He then looked up to Heaven and I believe that it was at that moment that he saw God and his loved ones who died becasue he smiled a smile that I will NEVER forget for as long as I live. He then dropped his head and was now looking past us, not at us, he let out 2 gasps of air, and he was gone. I witnessed a miracle and my dad left me with an amazing gift....his soul leaving his body to be with God!!!!

To anyone who is going thru this cancer (or any illness), I would love to hear from you. Every story and journey is unique. My dad's was quick...7 months from the day of diagnosis to the day he died. I am still in shock and dispair. I miss him more today than when it first happened and my whole family dynamics has changed since he died. I will pray for anyone and everyone and send you all my best wishes to give you all strength, whether it is you who has the illness or you have a family member going thru it. It is a terrible disease and this cancer is usually diagnosed when it is too late but I do melieve in Miracles regardless. My dad was in a coma and could NOT move, speak or open his eyes. And yet, when it was his time to go...he woke up and looked at me, moved his head and smiled!!!!! So miracles can and do happen so never stop hoping and praying.

God Bless

RE: My experience with my dad's esophageal cancer

by Momlynn on Tue Dec 11, 2007 12:00 AM

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Hi:  My name is Lynn and my beautiful son, Robbie, was diagnosed with Esophageal Cancer Stage IV on April 6th 2006.  He also was treated at the Juravinski Cancer Centre in Hamilton.  The brachytherapy cleared up the primary tumour, however, Robbie's cancer was adenocarcinoma and it had already spread to the liver.  Robbie went through 18 weeks of chemotherapy of Epirubicin and Carboplatin every 3 weeks and 5FU intravenous 24/7.  During this time Robbie lost his hair but otherwise looked very healthy and was able to eat and do most things except work.  He spent lots of time with his wife and 2 young daughters and the rest of the family.  In October 2006 Robbie's CT Scan showed that he had developed a pulmonary embolism and began taking Fragmin daily injecting it into his stomach.  He also started on an oral chemo drug called Capacetabine which he took until January of 2007.  He looked really good, was eating well, his hair grew back and he had put on weight.  Unfortunately, the tumours in his liver were not responding to this drug and so he was put on Docetaxel which he was very ill while on.  We were then told that there was no more conventional chemo for him and he went on a trial drug.  He went 5 days each week for treatment, however, this also did not work.  In June 2007 he underwent hepatic embolization and the hepatic artery was blocked which they hoped would stop the growth of cancer in his liver.  He looked as healthy as anyone throughout the rest of June and July.  We took the family on several camping trips which he really enjoyed and we have great memories.  In August he started feeling bloated all of the time and then underwent radio frequency ablation therapy.  He did this because the tumours in the right lobe of his liver had not grown but the ones in his left lobe had grown tremendously.  The doctor was able to burn most of the tumours away but she told Robbie that he had very little living liver tissue left.  I took a leave of absence from my job as a legal assistant to spend as much time as I could with my beloved son.  He started to have swelling in his legs and feet in late September.  It was his wish to die at home and our family doctor told him that he could keep him comfortable and Robbie right up to the end and that he would visit him at his home.  Robbie became very ill quite suddenly - about Ocotber 3, 2007.  He never had any jaundice but I could see that his liver was really swelling.  He got up on Sunday October 7, 2007 ate some breakfast with his little girls, gave them each a necklace with a locket on it with a picture of himself and them and a charm saying "Daddy's Little Girl".  He told them that when he went to Heaven they could hold it and talk to him and he would hear them.  He then asked his wife to help him to bed.  They laughed and joked about things that they had done in their younger years together.  He hugged and kissed her and fell asleep.  10 minutes later I called their home and asked Maria if I could speak to Robbie but I already knew that he had passed away in my heart.  She said that she had just come upstairs 10 minutes before and that he was sleeping.  I begged her to check on him and I could hear her calling him as she went to get him and then she screamed into the phone that she could not wake him.  We only live 4 blocks from their home and when we arrived he was still warm but gone.  He looked very peaceful and he had gone with Jesus to Heaven in his sleep.  During the last 2 weeks of his life he would dictate things to me to print into cards that he had purchased for his daughters for all the important events in their lives right down to the birth and baptism of their first child and then he would sign "Love Daddy".  He was too weak to write everything he wanted to say.  The night before he died I watched my dear boy as he dry heaved because the liver was so large and swollen with tumour.  I walked over to him, took both of his hands and said to him, Robbie, it should be me instead of you but I am not in charge.  I love you more than life itself but I cannot stand to see you suffer.  I told him that my husband and I would look after his wife and girls and that if Jesus came to take his hand and go.  He reached over and kissed me and hugged me and said I love you very much Mom and I said I love you too Robbie.  I lost my beloved son at the very young age of 35 to this beast.  I am still not able to return to my job.  I feel as though a part of me has been cut away and I have a large hole in me.  People tell me to get back to work and after all I still have 2 sons.  It really does not matter if I had 10 sons - each child is unique and I really miss my son.  I know that I am not ready to deal with clients and I will stay home helping my "daughter" and his 2 girls as much as I can.  I am very sorry about your Dad.  I really wish that this disease could be found much earlier.  Many donations were sent to the Juravinski Cancer Centre in memory of Robbie and I hope and pray that they will soon find someway to battle this demon so that other families so not have to suffer loss as we both did.  I pray for all of you.

God Bless and I sincerely hope that you will get through this Christmas without too much heartache.

Love Lynn (Mom of Robbie aged 35) 

RE: My experience with my dad's esophageal cancer

by Thru_my_dads_eyes on Thu Dec 13, 2007 12:00 AM

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Hello Lynn, I want to begin by saying that it was YOUR son's story that I read just a few days ago that inspired me to begin this journey. Thank you soooooooo much for replying to my own story and for allowing me to read more about Robbie. What a fortunate young man he was , or rather...IS... to have such a wonderful, loving mother like yourself. Even though I went through losing my dad within 7 months, I can not even begin to imagine what it was like for you (and the rest of your family). I can not believe he was only 35. My dad was 69 , but was blessed with amazing genes. He only looked about 55 or so. It really is a demon, just like you said. I am going through so many emotions even being angry at my dad. He was a smoker and up until 15 years ago, he was an alcoholic too. But he was an amazing, loving father and was never abusive. His dad was an alchoholic and when he was 12, his mother died. My dad was left to raise 4 younger brothers and take care of his dad. His father remarried and they had 7 more children and my dad took care of EVERYONE even after he married my mother and they had 4 of their own children. My dad was my hero and the only person in my life who always made me feel like I was special even when I didn't. How could God take him from us....from ME??? I am still haunted by the moment of his death. It was my dad's final gift to me.......He witnessed my birth and I witnessed his death and rebirth with God. Even so, I am lost. I am a single mother of a son and daughter. Since my dad's diagnosis, I have been through 7 jobs (in 10 months). I am scared and have no idea how I have not just ended it all. My family has changed soooo much since my dad died. About 3 weeks after, we just all went in different directions. My dad was a family man and now, everything he worked his whole life for, is gone. The cancer not killed my killed our family. My older brother and younger sister are in denial. My younger brother is about the only one who even mentions my dad to me and we share tears and laughter. I needed desperatly to come together with them and grieve our dad together but it never happened. I feel cheated and have had to mourn him all by myself. I do have 2 aunts who were and still are there for me and had it not been for them and my children, I shudder to think where I would be now. My poor mother lost her partner of 50 years and she has aged so much. She has lost 40 pounds and since the family is in such turmoil, she is suffering even more to see that her once united children have drifted. I have a lot of anger towards everyone. I was not ready to lose my dad. It was not supposed to be this way, so soon. I feel foolish saying this to you becasue Robbie was a baby compared to my dad. But I am sure that you know what I am trying to say. Your "daughter" and grandchildren are also blessed to have you. Robbie must have known and therefore died with peace just knowing that you would be there for them!!!! God Bless you Lynn. When the tumours started to pop out on a daily basis from his neck, my dad accepted his fate. He told me that he was not afraid to die. He was afraid of what would become of my mother knowing that she does not drive and would have to depend on us 4 kids. I must say that, for whatever reason, we have not done a good job at taking care of mom and her needs. We have all been selfish but not intentionally. We love each other to death but right now we are all grieving differently and I feel that since we were unable to come "together" after his death, that some of us have not dealt with it properly and therefore have no clue or energy to help mom. How old are your granddaughters? How are they and their mother doing since losing Robbie? I hope you don't mind me asking. How about your other 2 sons? It must be devastating for all of you. I feel as though I knew Robbie. Who knows, maybe our paths crossed during the visits to Juravinski. We went there everyday for 42 days from September till end of October 2006.

Lynn, I am sure that Robbie will give you the strength to go on. When you are ready to go back to work, you will know. He could NEVER leave you. I have felt my dads presence on 2 occasions so far. I was standing at my fridge staring at my favourite picture of us hugging, just days after the news of his spread and that he had 1-2 months. I was crying and talking to him and I had my right arm resting on my hip as I stroked our picture. I then felt a very definite sqeeze on my elbow. I slowly turned becasue I was sure that my son Michael was standing there ready to comfort me becasue he was in the family room and surly heard my crying. But as I turned to speak to him, there was no one there!!!! Lynn, it had to be him. My wrist watch stopped at the exact time of his death EXACTLY 1 week after. I carry that watch with me everywhere. It could have stopped at 4:00, or 9:00 but stopped at 2:40 AM. Again, I have to believe that was a sign. He knew how many regrets I had especially during his treatment. I went with him only 2 times becasue I could not afford to lose a days pay. Can you imagine....I missed going with my dad becasue of money. He never blammed me of course becasue he knew how hard it was for me financially. But I can not forgive myself.

Lynn, I do not have any words of wisdom for you. My heart goes out to you and your family and I will be thinking of all of you during the holiday season. Maybe God placed my dad and Robbie together in Heaven and they will be taking care of us. I will continue to keep each and everyone of you in my prayers. Lets both try to be strong and keep them alive in us.


God Bless and Keep in touch.

 Love, Fortunata

RE: My experience with my dad's esophageal cancer

by Lilynewf on Sat Dec 15, 2007 12:00 AM

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I am so sorry to hear about this, I am going through this with my mom ..she won't tell me what stage its in but I know its late...she has has 28 radiation therpy and already 2 kemo she was diagnosed in july, she has had surgery in september but they could not remove the tumor it is in her lymph nodes as well, I don't know what to do I am so lost..I hate to see her like this. She cannot eat or drink liquids she has a g-tube but anything that goes in comes right 6 months she has lost amost 110 lbs she looks so small and frail.  I don't think I can deal with just seems everytime I see her she gets worse and worse...


RE: My experience with my dad's esophageal cancer

by Momlynn on Sun Dec 16, 2007 12:00 AM

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Dear Fortunata:  You need to be gentle with yourself.  I lost my Dad to a heart attack 31 years ago at age 48.  I thought that was the worse thing that I would ever go through but losing Robbie has proven to be even worse than I could have imagined.  My grief counsellor continues to tell me that we all need to be gentle with ourselves.  I am feeling very confused at times because I have always believed that from the moment of birth we begin our journey to death and eternal life.  I also believe that God puts us on this earth and our date to return to Him is established when we arrive.  However, I am still having trouble with all of this because the night before my beloved son died I told him to go.  I know that he had the appointment with God and that I made things easier for him - I know this intellectually but I cannot yet accept it emotionally.

Robbie's 2 girls are 9 and 5.  The oldest one had her 9th birthday just 10 days after he passed away.  At times she is very mad at God and says that he did the wrong thing.  We talk about Daddy being able to get his burps up now and that he is not sick any longer.  We talk about how Daddy can see her and he loves her.  We often go to the gravesite and we talk to Daddy.  Sabina is also high end autistic (Aspberger's Syndrome) and she was extremely close to her Daddy.  He was the calm one, the one that could always speak to her and calm her down.  Maria is slowly learning how to deal with Sabina but many times she will call and ask me to come and get Sabina because she cannot handle her anymore.  I feel that I MUST do this for my Robbie.  Julea his 5 year old is very angry and is having temper tantrums which is her way of grieving.

My other 2 boys are extremely close to one another and they call me more and want to keep in touch more now that Robbie has gone.  Robbie was always the one that came to my home to check on my husband and I.  Rarely did a day go by that I did not see or hear from him.  I feel like a piece of my body has been torn off and I don't know how to cope.  I am trying to not feel guilty because I am tired and because I do not feel like doing things. 

Maria, I am afraid, is trying to bury everything inside of her.  She threw herself back into her little cleaning business just 2 weeks after Robbie passed away.  She keeps herself sooo busy that she cannot think and I am worried that she is heading towards a breakdown.  Both of the girls and I go to the same grief counsellor and we are trying to convince her to make time to go by herself and get some assistance in dealing with her grief.

Fortunata, it is really unfortunate that your family did not come together with your Dad's illness and passing.  My brothers and sisters-in-law are closer and more caring towards me than they have been for years.  My own mother, I am afraid, did not accept the fact that Robbie was terninal and kept telling everyone at our church that he was getting better.  I tried to tell her that he was terminal which meant that he could not survive.  She would get very angry with me and tell me that I was not a very good mother because I have my son dead and buried already.  I did not - I truly hoped that Robbie would be one of the lucky ones but I also did what he asked and accepted the diagnosis and stayed strong for him.  Since his death, 2 1/2 months ago, I have had to have very little contact with my mother because she has told me that the funeral is over and my son is in his grave and that I need to get on with things.  I try to tell her in a way that is respectful that I will never get over losing my child but she just will not listen.  I used to have her over to our home for dinner once a week but I have only had the strength to have her here once since Robbie died.  I will have her here on Christmas day but I am praying that she will not start anything or my husband will take her home.  He is suffering in 2 ways - he misses our Robbie and is still grieving and crying and he suffers also because he is watching me. 

Please please do not feel guilty about anything that has happened either before or after your Dad passed away.  He knew your situation and he loved you just as Robbie loved me.  Everyone grieves in their own way and perhaps your siblings are not ready to talk about your Dad and what he meant to them.  Now for me, it is very important to speak about my son and to hear his name, Robbie, and to have others talk about him.  I need this kind of therapy where I can tell others about my beautiful boy.  Fathers love their daughters and sons unconditionally but I think that they always do not show it as much as a mother does.  Your mother will be suffering as much as me only in a different way.  Losing a child is not the natural order of things.

Perhaps your siblings just need to have someone reach out and have a family get together - not necessarily for Christmas - just for a pot luck lunch or supper.  Sometimes just being together helps.  We spend a lot of family time together.  Not as much as I would like - but we try to keep in touch as much as possible.  I was just talking to my youngest son, Joey, on the phone and I said to him that when I finally got up the nerve to go Christmas shopping I had a terrible time because I wanted to purchase 3 of everything for the stockings I still fill for my boys.  I purchased 3 of everything for my daughters-in-law and I had to put things back several times.  He said to me Mom, don't be so hard on yourself - these things are going to happen for a long time.  We have lost a brother and you have lost a son and it is going to take a long time to accept this.

The journey that you travelled with your dad is one that no-one (no matter how old they are) should have to go through.  Robbie was at Juravinski every Tuesday throughout September and October 2006.  He was usually in the chemo unit and had blood drawn to see his count and would then have his treatments.  Robbie's doctors were Dr. Sur and Dr. Dhesy-Thind.  He also saw Dr. Hotte when he went into the trial and the surgeon who did the other work was Dr. Choi.  If you were in the Centre on Tuesdays during those months we probably did see you.  I know that we spoke to many people who had the same dreadful disease.  Dr. Sur told us that his youngest patient was 17 so I guess this demon is striking even the younger people.

Fortunata, even though you and I will never get over our loss - yours of your father and mine of my son - we will learn to live again.  We just must take the time that we need to grieve and to learn to readjust our family dynamics.  Christmas and all the firsts are going to be very hard.  I have always loved to set a pretty table for festive occasions and this year I have decided that I will set up a buffet and everyone can just sit where they wish.  Robbie always sat to my left and I know that I would just cry though dinner and it is not worth it. 

I sincerely hope that you have a good holiday.  I know it will be sad because I cry just thinking about our loss.  My counsellor, Lisa, told me to purchase something for Robbie and put it under the tree and have Sabina and Julea open it.  She said it could be some type of memorial or something for his grave.  My husband and I purchased a Thomas Kincade Memorial mobile and wind chime.  When the spring comes we are going to put it on a shepherd's hook and take it to his grave.  Lisa said that if we did not acknowledge Robbie that it would seem like there was a big white elephant in the middle of the room.  Perhaps you could pick  up something small and put it under the tree for your Dad.  It might make you feel better acknowledging that he did live and love and you do miss him.

I hope that I have been able to help you somewhat as I am still in deep grief myself at this time.  Every morning I wake up and hope that it was a bad dream and then I realize that my dear boy is gone.  I know that his family is suffering and he is not but that does not stop the tears.  Remember also, that grief is very exhausting so give yourself some time to rest.

Merry Christmas and may God's Peace and Love help get you through.

Love Lynn

RE: My experience with my dad's esophageal cancer

by Thru_my_dads_eyes on Tue Dec 18, 2007 12:00 AM

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Hello Lynn, I knew that there was something about your story, your son Robbie, that drew me to you. Dr. Sur and Dr. Dhesi were aslo my Dad's doctors. Theym especially Dr. Sur, were so hopeful that Dad would be that 1 in 4 that would survive. Dr. Dhesi was the one that actually told us about the spread and that he had about 1-2 months. We actually buried him 2 months to the day that she gave us that news.

Thank you for telling me more about Robbie and the rest of your family. I am not trying to intrude and I hope you know that. I am so touched with your story and grateful that you also feel that you NEED to talk about Robbie, as I do about my Dad. Christmas Eve dinner is at my house this year and I am setting a new tradition.....I have set a plate complete with glass, cutlery and napkin, just for my Dad, at the head of the table. From now on, whenever I have a family gathering at MY home, that is what I am going to do. I also bought ornaments that have a picture frame in it. I put a picture of my Dad in one and my mom in the other, next to my 2 children's pictures. His ornamnet will always be the first one on the tree. I also found a Star of David ornament with "DAD" hanging in the middle with a red stone. I bought one for each of my siblings and my daughter handed them out to them at her Confirmation dinner last month. I think that everyone appreciated it. I just don't know and I certainly hope that they appreciate me setting a place for my Dad at the table.

Lynn, I truly will be praying and thinking of you and your family this Christmas. Loss is a Loss and the emptiness we feel is overwhelming. I am a mother and can not even fathom what you must be feeling. I send you a million hugs during the most difficult times that you have.

I am having surgery tomorrow so if I do not get around to the computer, Please know that I am and will be thinking of you, your family and Robbie during the holidays. I will look forward to talking to you soon.

God Bless you and THANK YOU for not making me feel like I am going crazy but instead, that my feelings are normal.


RE: My experience with my dad's esophageal cancer

by Thru_my_dads_eyes on Sun Jan 20, 2008 12:00 AM

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Dear Lynn...How are you???? It has been a long time since we last touched base. I am sorry about that. I thought about you, Robbie, his family and the rest of your family during the Holidays. I hope that your Christmas and New Year was better than mine. I had Christmas Eve dinner here at my house. My family acted as if everything was great. You would never have known that someone so dear and prescious to us was physically gone. No one mentioned the "Special" place setting I set up at the head of the table for my Dad. I had surgery 5 days prior and went to a lot of trouble to make sure that I pulled it off. I was exhasuted and yet I did not enjoy being with my family. Everyone left by 11:30 pm and the kids were all disappointed becasue they were having a good time altogether. New Year's Eve I spent alone but it would take forever to explain. It was, apart from the journey with my Dad, the saddest time of my life. My mother, older brother and sister, along with their falilies, were all together. My younger brother had to work (he is in the restaurant business) and so I spent it alone on the couch with my dog. I allowed the kids to make plans with friends and neighbours. I am so relieved to see 2007 gone but 2008 has not been much better so far.

Please, let me know how you and the rest of the family got through the Holidays. I can not even imagine how difficult it was for you and your husband. I look forward to hearing from you.

 Take care and God Bless....Love Fortunata 


RE: My experience with my dad's esophageal cancer

by VictoriaS21 on Thu Sep 19, 2019 12:31 PM

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I guess that it had to be a great topic...

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