In memory of my father

MRapp226
MRapp226 Member Posts: 44
edited March 2014 in Esophageal Cancer #1
Hello. My name is Melissa and my father was diagnosed with Esophageal Cancer - Squamous Cells on August 9, 2010. Unfortunately, he passed on Sunday, August 29th at 54 years old. I found this forum when he was first diagnosed but was always at the hospital or making calls to get him second opinions.

On Friday, August 23rd, we got him up to Robert Wood Johnson Cancer Center in New Brunswick, NJ. They did a PET Scan and we were told on Tuesday, August 24th he has a few weeks to live. Apparently, my father had the cancer for at least two years. My dad always had a high treshold of pain and he complained about stomach issues in the past. We had thought it was stress...possibly an ulcer. NEVER in a million years did we think it was esophageal cancer. When he was first diagnosed, we were told he had a mass in the esophagus and a tumor in his stomach. After RWJ did the PET Scan, we were told it spread everywhere. On Friday, August 27th, he was brought home and placed in hospice care. As I said before, he died Sunday morning with my mom, brother and me at his side.

I know this site is a survivor's site but I know that you all know the fear, helplessness, at times hopelessness and anger. How could this happen??? My dad was a non-smoker, didn't drink and was a great guy. Why him???? Why this? Why couldn't it be treated???? It just doesn't make sense to me or anyone else for that matter. I am having a hard time today as it has been a week since he has been gone and I miss him terribly and cannot believe he is not going to walk through the door or call me ever again.

The month of August has been a roller coaster ride... Something that I never understood that cancer patients and their loved ones went through. I wish all of you the very best with your treatment and life after cancer. My only dream is that someone, somewhere come up with a treatment for ALL cancers that it is an option for ALL not a few. My dad was told that chemotherapy would kill him. And, my dad didn't want to suffer. He made us a promise that we wouldn't put him through that.

In the end, I must tell you that he died on his terms. He didn't want to suffer, which he didn't... He saw his dad (who died several years ago) several times before he passed who
informed him there was a place in Heaven for him. My grandfather even told him all about Heaven and it sounds like a beautiful place. He was at peace with it. Of course, I am not but have to, NEED to find comfort in what I just typed.

Thank you for listening. If anyone knows of a Cancer Support Group in the Central Jersey area, please let me know. I need to talk to other people that have gone through this and believe it will be good for my mom as well.

Warmest regards,
Melissa

Comments

  • MOE58
    MOE58 Member Posts: 589 Member
    SO SORRY
    Melissa,

    I am so sorry you lost your dad at such a young age 54 is young. You don't have to be a smoker or drinker, if he had acid reflux, he can get EC, It sounds like your father just didn't know what was going on until it was too late. If he had ACID REFLUX either in his earlier years or current this is a sign of EC,

    My x-husband Jeff was diagnosed on April fools day 09, he was only 45 of course he was a smoker and a drinker, but he had ACID REFLUX really bad and ate TUMS like they were going out of style. He never had been to a doctor in 20 years other than workers comp one day he told me he hurt around his gallbladder so they were checking everything out there. When everything was negative, i got very persistent cause i knew the man was sick, they did a scope and thats where we found this ugly beast, like you i never thought in a million years that cancer would be the diagnosis. It was a very long journey but he fought the disease had surgery and now is one year cancer free (yes we are divorced but best friends)

    We had a very good mentor on this site named KITTEN0385 (she too passed last november with EC and was only 24) without her i couldn't have done it.

    Melissa, my heart aches for you and cant imagine the roller coaster you rode for a very short time, but at least the doctors were honest and didn't lead you on or put him through tests and etc, knowing it wasn't going to help.

    You ask about support groups, call the American Canacer Socciety in your area, they will have the support groups, also call the hospital he was in, they also have support groups they did for us.

    Please know we are all here for you if you want to just vent and talk and cry, we have all walked some kind of journey or roller coaster on this board. We all live miles from each other but we all become family on this board, and the ones that can help we try to help them I don't really post much anymore, unless its something I ccan help someone with, and I had to post for you to give you some insight on how he might have caught this EC.

    I wish you and your family our love and you have to keep putting one foot forward and keep going, yes its hard knowing your father won't ever walk in that door again, call on the phone or be there when you just need a shoulder to cry on, (thats what was hard for me when I lost my dad to cancer to) its not easy he has been gone 5 years and I still miss him tremdously.

    If I can help further please let me know.

    Lori/moe58
  • MRapp226
    MRapp226 Member Posts: 44
    MOE58 said:

    SO SORRY
    Melissa,

    I am so sorry you lost your dad at such a young age 54 is young. You don't have to be a smoker or drinker, if he had acid reflux, he can get EC, It sounds like your father just didn't know what was going on until it was too late. If he had ACID REFLUX either in his earlier years or current this is a sign of EC,

    My x-husband Jeff was diagnosed on April fools day 09, he was only 45 of course he was a smoker and a drinker, but he had ACID REFLUX really bad and ate TUMS like they were going out of style. He never had been to a doctor in 20 years other than workers comp one day he told me he hurt around his gallbladder so they were checking everything out there. When everything was negative, i got very persistent cause i knew the man was sick, they did a scope and thats where we found this ugly beast, like you i never thought in a million years that cancer would be the diagnosis. It was a very long journey but he fought the disease had surgery and now is one year cancer free (yes we are divorced but best friends)

    We had a very good mentor on this site named KITTEN0385 (she too passed last november with EC and was only 24) without her i couldn't have done it.

    Melissa, my heart aches for you and cant imagine the roller coaster you rode for a very short time, but at least the doctors were honest and didn't lead you on or put him through tests and etc, knowing it wasn't going to help.

    You ask about support groups, call the American Canacer Socciety in your area, they will have the support groups, also call the hospital he was in, they also have support groups they did for us.

    Please know we are all here for you if you want to just vent and talk and cry, we have all walked some kind of journey or roller coaster on this board. We all live miles from each other but we all become family on this board, and the ones that can help we try to help them I don't really post much anymore, unless its something I ccan help someone with, and I had to post for you to give you some insight on how he might have caught this EC.

    I wish you and your family our love and you have to keep putting one foot forward and keep going, yes its hard knowing your father won't ever walk in that door again, call on the phone or be there when you just need a shoulder to cry on, (thats what was hard for me when I lost my dad to cancer to) its not easy he has been gone 5 years and I still miss him tremdously.

    If I can help further please let me know.

    Lori/moe58

    Thank you
    Thank you, Lori, for writing back. The doctors did say that the Acid Reflux caused this and that makes me madder. He had been dealing with Acid Reflux for years and his Primary Care Doctor told him to take Prilosec... NOT ONCE, did he say that my dad needed to be scoped every year - NOT ONCE!!!!!!!!!!!!!! All the Prilosec did was mask what was happening. Dad told the Oncologist that he wished that adults could have a health management book to guide us through the aches and pains kind of like the baby books. haha

    I could go on and on about Health Insurance in the country but will save that rant for another day. = ) It is not going to bring my dad back.

    Thank you, again. Best wishes to your ex on his recovery.

    Warmest regards,
    Melissa
  • This comment has been removed by the Moderator
  • paul61
    paul61 Member Posts: 1,392 Member
    I am so sorry to hear about your father
    Melissa,

    I am so sorry to hear about your father. Like your dad I had acid reflux issues for years. They said “watch spicy foods, take prilosec, sleep with the head of your bed elevated”. Nobody said anything about the potential for cancer. I finally got to the point where I told my doctor we needed to try something else. He sent to for an endoscopy and then they told me I had esophageal cancer.

    I was fortunate. I had surgery and chemotherapy, and at least for now show “no evidence of disease”. I know how painful it must have been for you dad and family to hear the diagnosis and prognosis.

    I pray you dad is now somewhere where there is no pain and fear. May God provide your family with peace and comfort during this difficult time.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 – Stage IIB
    12/03/2009 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
  • MRapp226
    MRapp226 Member Posts: 44
    paul61 said:

    I am so sorry to hear about your father
    Melissa,

    I am so sorry to hear about your father. Like your dad I had acid reflux issues for years. They said “watch spicy foods, take prilosec, sleep with the head of your bed elevated”. Nobody said anything about the potential for cancer. I finally got to the point where I told my doctor we needed to try something else. He sent to for an endoscopy and then they told me I had esophageal cancer.

    I was fortunate. I had surgery and chemotherapy, and at least for now show “no evidence of disease”. I know how painful it must have been for you dad and family to hear the diagnosis and prognosis.

    I pray you dad is now somewhere where there is no pain and fear. May God provide your family with peace and comfort during this difficult time.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 – Stage IIB
    12/03/2009 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Thank you, again
    Thank you all for responding to my post. I felt so alone going through this and even more so now. I am having a hard time today. My brother just left for his flight home and mom and I are heading up to my house for a few weeks. It is sad to leave my parents house... I feel lost but know one day I will be able to smile at the memories. I look forward to that day.

    Take care of yourselves and beat this disease.

    -Melissa
  • MOE58
    MOE58 Member Posts: 589 Member
    MRapp226 said:

    Thank you, again
    Thank you all for responding to my post. I felt so alone going through this and even more so now. I am having a hard time today. My brother just left for his flight home and mom and I are heading up to my house for a few weeks. It is sad to leave my parents house... I feel lost but know one day I will be able to smile at the memories. I look forward to that day.

    Take care of yourselves and beat this disease.

    -Melissa

    Memories
    Melissa,

    It will be hard for awhile but you have to keep all the memories of your dad within your heart. Just know if your DAD would have said something about his acid reflux he would have found this disease early enough, but like you said he had a high tolerance so he didn't pursue it. It will always be hard to come back in that house, knowing he won't be there to greet you, spend holidays with you, call you go places with you and etc, but he will always be in your heart, he may not be there in person, but he is with you in coversation and dalways in your heart.

    Please know we are all family here and if you need to vent or cry or just ask why please come online and we will try to help you.

    Take care of mom and enjoy all you can

    Lori
  • sandy1943
    sandy1943 Member Posts: 824
    Hello melissa, So sorry for
    Hello melissa, So sorry for you and your family for the loss of your dad. I was diagnosed in Nov.2007 with stage 111 Ec. I didn't have the acid reflux, but did have heart burn alot, even to the point of checking my heart. Only after I had trouble swallowing did the dr. order a scope. I never thought cancer. Then to find out this cancer was rare in the U.S until a few years ago and to find out it is rare in women. I was in shock. I didn't even know what the esophagus was. I am now cancer free--I have been lucky, My faith in God has helped me with this journey.
    When we are diagnosed, we become a survivor for how ever long the Lord decides to let us remain. I feel I need to educate myself so that I can spresd the word. Doctors do seem to treat indigestion, acid reflux, pains in chest etc. lightly. All of these and others are signs of a problem. One of the first things dr. should do is scope and find out what's wrong. Do find a support group to help you through this and know there are a lot here that do care and welcome you anytime.
    My prayers are with you and family,
    Sandra
  • carolynss
    carolynss Member Posts: 4
    I'm so sorry.
    Hi Melissa,

    First I want to say how very very sorry I am. I know that pain too well. I lost my dad to esophageal cancer too. He died in April of 09 and was otherwise very healthy and happy. He was diagnosed only 1 year before that. He was not a smoker or a drinker, etc. It all happened so fast. I was in denial the whole time not really believing he was going. Not even when he was in hospice. I know. I feel like an idiot now. I just never had anyone in my family or around me die until then. I didn't really "get" what was happening. I miss him so dearly. I see photos of him or a shirt he wore and all I can think of is "where is he? - how can he just disappear?" There was so much personality there. So much spirit. He can't just be gone. (And I don't think he is - I believe in heaven and afterlife, etc. ) But it's NOT fair. It's a horrible disease. I'm so sad for you because I know very well how painful and lonely it is. Just know that I and many many others are with you in spirit. I'll pray for things to get easier for you. Your fathers spirit is still here in all the things he taught you and all that he did for you and how much he loved you. My heart is with you. Hugs from a distant friend.
  • MRapp226
    MRapp226 Member Posts: 44
    carolynss said:

    I'm so sorry.
    Hi Melissa,

    First I want to say how very very sorry I am. I know that pain too well. I lost my dad to esophageal cancer too. He died in April of 09 and was otherwise very healthy and happy. He was diagnosed only 1 year before that. He was not a smoker or a drinker, etc. It all happened so fast. I was in denial the whole time not really believing he was going. Not even when he was in hospice. I know. I feel like an idiot now. I just never had anyone in my family or around me die until then. I didn't really "get" what was happening. I miss him so dearly. I see photos of him or a shirt he wore and all I can think of is "where is he? - how can he just disappear?" There was so much personality there. So much spirit. He can't just be gone. (And I don't think he is - I believe in heaven and afterlife, etc. ) But it's NOT fair. It's a horrible disease. I'm so sad for you because I know very well how painful and lonely it is. Just know that I and many many others are with you in spirit. I'll pray for things to get easier for you. Your fathers spirit is still here in all the things he taught you and all that he did for you and how much he loved you. My heart is with you. Hugs from a distant friend.

    thank you
    Thank you for your note. And, I am so sorry to hear of your loss.

    I have had a rough couple of days and keeping saying out loud, "Dad, please come to me... Let me know you are okay." My dog was growling at something that neither my husband or I could see. Was it him? I hope so - I want to know he is okay. I, too, believe in Heaven and afterlife. He told us my grandfather came to him prior to his passing and explained Heaven to him and told him there was a place for him.

    Like I have said before, I never heard of EC. Now, I preach to everyone I know with Acid Reflux - GET SCOPED ONCE A YEAR!!!!!!!!!! I don't want anyone to go through this.

    I am grateful for the time I had with him all my life (he truly was one of my best friends) and especially in his last days. I grateful that I helped him transition from life on earth to life in Heaven. I am so lucky to have had a wonderful father like him. NOw, I know he will be watching over me from above...

    Warmest regards,
    Melissa
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    MRapp226 said:

    thank you
    Thank you for your note. And, I am so sorry to hear of your loss.

    I have had a rough couple of days and keeping saying out loud, "Dad, please come to me... Let me know you are okay." My dog was growling at something that neither my husband or I could see. Was it him? I hope so - I want to know he is okay. I, too, believe in Heaven and afterlife. He told us my grandfather came to him prior to his passing and explained Heaven to him and told him there was a place for him.

    Like I have said before, I never heard of EC. Now, I preach to everyone I know with Acid Reflux - GET SCOPED ONCE A YEAR!!!!!!!!!! I don't want anyone to go through this.

    I am grateful for the time I had with him all my life (he truly was one of my best friends) and especially in his last days. I grateful that I helped him transition from life on earth to life in Heaven. I am so lucky to have had a wonderful father like him. NOw, I know he will be watching over me from above...

    Warmest regards,
    Melissa

    My Deepest Sympathies
    Hello Melissa and welcome to our family. I too was a caregiver for my dad. My dad also suffered many years with acid reflux. He was never told to have a scope done. He told himself in 8/08 that something has got to be wrong, I can not swallow, the food is getting stuck, I have to keep spitting up my food. We are originally from central NJ. Born and raised in Ocean Township. We moved in 2004 to Virginia when my parents retired. I totally agree, all people have to get a scope done if they are having chronic acid reflux. I am hoping that the ACS can help to get this word out. Maybe now that a famous actor, Michael Douglas has throat cancer it will be. My dad had chemo and raditation for his ec and went into remission from 1/09 to 12/09. In December he became very sick with a blocked bile duct in his liver. It was blocked with cancerous tumors. They put in a stent, which helped, and they also put a stent in his esophagus which became blocked with scar tissue from the radiation. Both stents did a good job. He came home just before Christmas. He started chemo for the liver cancer in Feb. He had every side effect imagainable. Looking back I wish we never started the chemo again. It just made it all worse. This is a trial and error, live and learn journey. He lost his battle on March 9, 2010. We gave him our blessings to go. He told us The Lord told him he had a strong hand shake. I was happy to read that your dad told you he had been visited by his father and grandfather. Those are signs that they are ok, and all is well in Heaven. I have not gotten any signs from my dad, but the day we saw him in the funeral home before his cremation, two of his favorite songs were playing in the background. "Love me Tender" and "My Way". This was a sign for me. Dad made those songs play to let us know he was ok. Thank you for letting me share my story. Keep in touch. And may God grant you your mom and family the peace you will need in these coming days and months.
    Tina