New here and scared to death.
I have reading the discussions and first let me say I am soo sorry that everyone has to deal with the damn cancer either persoanally or if they are dealing with a loved one. This truly sucks to put it bluntly.
My father is 74 and was was having problems swallowing. He was rushed to the hospital cause a piece of meat was logged in his throat. The hospital biopsied his throat and they found a tumor. Dad has cancer of the esophagus...adenocareloma (excuse my spelling). Dad had a PET Test on 11/9/11 and the surgeon told him the head of his pancreas lite up so now he needs to have an EUS this Wednesday to determine the demension of the tumor and if in fact he has pancreas cancer as well.
My father already only has one kidney. He had a fistula put in his arm for dialysis in 2009 but has watched his diet and has been able to avoid dialysis by the skin of his teeth. He has COPD (pulmanary) issues.
The surgeon told my family if my Dad has pancreas cancer they will not be able to operate on him. If he doesn't he will have to have chemo and radiation to shrink the tumor before trying to operate on the esophagus. The surgeon is concerned with my Dad's lung function if he operates.
I just feel like I'm in a tornado and it's just spinning and I can't stop it. I can't stopy crying all the time, I try not to but the tears just come rolling down my face...even at work. How does everyone deal with this everyday? I feel like a little girl again...except I just want to stay near my father everyday and not leave his side.
Comments
-
Hello I know exactly what
Hello
I know exactly what you`re going through. My husband (48 years old)was diagnosed with stage 4 adenocarcinoma of the esophagus with liver metastases in January 2011. We were given a very grim prognosis, here we are 11 months later and the PET scan in October, 2011 showed complete regression of the esophagus and liver. NEVER GIVE UP. Number one - consider changing his diet by reducing sugar intake and eat lots of vegetables(I also juice fruits and vegetables everyday) Number two - talk to his family doctor about low dose Naltrexone which has been shown to stop cancer especially all the cancers of the gastro intestinal such as the esophagus, liver pancreas etc (you can check the web at ldninfo.org). Number 3 - See a naturopathic doctor and get Vitamin C IV (my husband was getting 85000mg infused twice weekly, he is now getting it once per week). My husband is also taking many supplements to help boost his immune system. He did 10 rounds of radiation and 6 treatments of chemo Cisplatin and 5FU every 4 weeks, he continued working during radiation and chemo and feels very good. A positive attitude and the will to fight can do wonders. As I said never give up hope, there are survivors out there.0 -
Thank youGinny_B said:So sorry
Honey, we all feel your pain. It's so so hard. It's good that you're getting all the testing done. Once that is done, then they will come up with a plan of action.
I'm caregiver to my 84 year old mom who has EC.
Ginny
Thank you so much for you encouragement. I truly needed it. Everything is on pins and needles right now. My father is somewhat of a stubborn Italian so we are thinking he may even refuse treatment. I am just eager for a "plan of action". I want to know everything I can about this beast and fight side by side with my father to beat it.0 -
Thank you...lyndez said:Hello I know exactly what
Hello
I know exactly what you`re going through. My husband (48 years old)was diagnosed with stage 4 adenocarcinoma of the esophagus with liver metastases in January 2011. We were given a very grim prognosis, here we are 11 months later and the PET scan in October, 2011 showed complete regression of the esophagus and liver. NEVER GIVE UP. Number one - consider changing his diet by reducing sugar intake and eat lots of vegetables(I also juice fruits and vegetables everyday) Number two - talk to his family doctor about low dose Naltrexone which has been shown to stop cancer especially all the cancers of the gastro intestinal such as the esophagus, liver pancreas etc (you can check the web at ldninfo.org). Number 3 - See a naturopathic doctor and get Vitamin C IV (my husband was getting 85000mg infused twice weekly, he is now getting it once per week). My husband is also taking many supplements to help boost his immune system. He did 10 rounds of radiation and 6 treatments of chemo Cisplatin and 5FU every 4 weeks, he continued working during radiation and chemo and feels very good. A positive attitude and the will to fight can do wonders. As I said never give up hope, there are survivors out there.
Thank you very very much for the information....I am going to check out all your suggestions and see if they will help my father. Listen, I don't even have a facebook account. I am very old school even though I am 31 years old that's just the way I am. I can't be bothered with the whole thing...but this is for a different cause. So this is a perfect example of why I joined this site cause of people like you. People going through this and offering suggestions and help. Thank you very much lyndzez! I truly appreciate it!0 -
Thank you...lyndez said:Hello I know exactly what
Hello
I know exactly what you`re going through. My husband (48 years old)was diagnosed with stage 4 adenocarcinoma of the esophagus with liver metastases in January 2011. We were given a very grim prognosis, here we are 11 months later and the PET scan in October, 2011 showed complete regression of the esophagus and liver. NEVER GIVE UP. Number one - consider changing his diet by reducing sugar intake and eat lots of vegetables(I also juice fruits and vegetables everyday) Number two - talk to his family doctor about low dose Naltrexone which has been shown to stop cancer especially all the cancers of the gastro intestinal such as the esophagus, liver pancreas etc (you can check the web at ldninfo.org). Number 3 - See a naturopathic doctor and get Vitamin C IV (my husband was getting 85000mg infused twice weekly, he is now getting it once per week). My husband is also taking many supplements to help boost his immune system. He did 10 rounds of radiation and 6 treatments of chemo Cisplatin and 5FU every 4 weeks, he continued working during radiation and chemo and feels very good. A positive attitude and the will to fight can do wonders. As I said never give up hope, there are survivors out there.
Thank you very very much for the information....I am going to check out all your suggestions and see if they will help my father. Listen, I don't even have a facebook account. I am very old school even though I am 31 years old that's just the way I am. I can't be bothered with the whole thing...but this is for a different cause. So this is a perfect example of why I joined this site cause of people like you. People going through this and offering suggestions and help. Thank you very much lyndzez! I truly appreciate it!0 -
Thank you...lyndez said:Hello I know exactly what
Hello
I know exactly what you`re going through. My husband (48 years old)was diagnosed with stage 4 adenocarcinoma of the esophagus with liver metastases in January 2011. We were given a very grim prognosis, here we are 11 months later and the PET scan in October, 2011 showed complete regression of the esophagus and liver. NEVER GIVE UP. Number one - consider changing his diet by reducing sugar intake and eat lots of vegetables(I also juice fruits and vegetables everyday) Number two - talk to his family doctor about low dose Naltrexone which has been shown to stop cancer especially all the cancers of the gastro intestinal such as the esophagus, liver pancreas etc (you can check the web at ldninfo.org). Number 3 - See a naturopathic doctor and get Vitamin C IV (my husband was getting 85000mg infused twice weekly, he is now getting it once per week). My husband is also taking many supplements to help boost his immune system. He did 10 rounds of radiation and 6 treatments of chemo Cisplatin and 5FU every 4 weeks, he continued working during radiation and chemo and feels very good. A positive attitude and the will to fight can do wonders. As I said never give up hope, there are survivors out there.
Thank you very very much for the information....I am going to check out all your suggestions and see if they will help my father. Listen, I don't even have a facebook account. I am very old school even though I am 31 years old that's just the way I am. I can't be bothered with the whole thing...but this is for a different cause. So this is a perfect example of why I joined this site cause of people like you. People going through this and offering suggestions and help. Thank you very much lyndzez! I truly appreciate it!0 -
00lyndez said:Hello I know exactly what
Hello
I know exactly what you`re going through. My husband (48 years old)was diagnosed with stage 4 adenocarcinoma of the esophagus with liver metastases in January 2011. We were given a very grim prognosis, here we are 11 months later and the PET scan in October, 2011 showed complete regression of the esophagus and liver. NEVER GIVE UP. Number one - consider changing his diet by reducing sugar intake and eat lots of vegetables(I also juice fruits and vegetables everyday) Number two - talk to his family doctor about low dose Naltrexone which has been shown to stop cancer especially all the cancers of the gastro intestinal such as the esophagus, liver pancreas etc (you can check the web at ldninfo.org). Number 3 - See a naturopathic doctor and get Vitamin C IV (my husband was getting 85000mg infused twice weekly, he is now getting it once per week). My husband is also taking many supplements to help boost his immune system. He did 10 rounds of radiation and 6 treatments of chemo Cisplatin and 5FU every 4 weeks, he continued working during radiation and chemo and feels very good. A positive attitude and the will to fight can do wonders. As I said never give up hope, there are survivors out there.
000 -
It's wonderful that you wantCalabrian Fighter Joe said:Thank you
Thank you so much for you encouragement. I truly needed it. Everything is on pins and needles right now. My father is somewhat of a stubborn Italian so we are thinking he may even refuse treatment. I am just eager for a "plan of action". I want to know everything I can about this beast and fight side by side with my father to beat it.
It's wonderful that you want to be so supportive of your Dad. It is so scary isn't it. My husband was just diagnosed as well and it is difficult waiting and wondering. I am 58 and spend half my time in tears as well. Half of me wants to hurry up and get a plan of action and get started. The other half of me wants to put off this process that will change our lives so much (though I know that is not a choice). This seems like a wonderful place for support and advice, and there are several of us newbies here. Hopefully we can support each other. Hugs to you and your family.
Freida0 -
I know that feeling likeCalabrian Fighter Joe said:00
00
I know that feeling like you're in a tornado and the can't stop crying part. And it goes from that to a wild roller coaster ride at times. Welcome to our EC world!
There is good news though. There are wonderful caring people here who can answer questions and share their many varied experiences. There are survivors out there, even stage IVs with 6 and 7 years and still going. Chemotherapy has come a long way along with drugs to help with side effects. Be sure you have him seen at a cancer center that sees lots of EC and get at least one second opinion.
My husband was diagnosed with stage IV in late June. He is on his 6th round of chemo (Oxaliplatin and Xeloda) and is doing well, We were even able to take an 18 day vacation between rounds 5 and 6. His PET and CT scans have each shown significant improvement. Enjoy the good days!
Get as much information as you can from his doctors and from forums like this. Don't even bother with random internet searches--lots of old outdated data there. The people here are living this every day, real time. And try to just go one day/one step at a time and don't try to figure out 2 steps down the road.
Hang in there. You're in my thoughts and prayers.
Angie
PS I forgot to say that my husband also has just one kidney--born that way. He didn't know it until a few years ago when he was having a scan for something else.0 -
welcome is a hated way to have to say hello here...
CALA,
So you need to know the STAGE of his cancer, and is the pancreatic or EC the primary?
There's so much to know and it IS scary, but TOGETHER, we somehow get through this day by day and become family and friends like NO other I have ever had.
William is our decide (almost) survivor and granddad here so he will post to you here soon, too. Sheri saved my pain level and life with HER experience loosing Steve and with steriods and HOW to call and when to get hospice (IF stage IV you DO NOT wait) and Terry and so may I will hat t start forgetting names and didn't want to hurt feelings. There is a LOT of experience here, so hang on, and keep reading here, and posting again, and again, and PLEASE stick around with us join our family!!
I can try to help, And I WILL all I can I have 6 months so far and it's s roller coaster for everyone no one is immune fro ANY of the pain or surprises and lack of control (the WORST part by ten times))....
Welcome hate to say welcome to this EC as it is a MONSTER and robs you of everything normal. But the difference in a stage II or like me a Stage IVB is BIG for even posting more, and others are waiting to post when you know these numbers....
GLAD you are here and found us my wife and I were VERY alone and scared by all the horrid stats on the internet so THIS is home daily now, and there are many of us although we have already lost a few, some to chemo, some to the EC. You can't beat stage IV EC.
God bless and what's your name?
Eric0 -
Hi and welcome
It's so helpful if we have a first name so we can send our messages and prayers in the right direction. I can only echo what others have already said that this is a beastly disease like no other. If it's not stage IV it is survivable though and that's what you need to focus on. Even at Stage IV some can manage to live with it for quite awhile. Definately get a second and maybe a third opinion and make sure you take good notes. Sometimes it's actually a good thing to take someone else along to the appointments to be the recorder. You have come to the best site on earth for information and support. I just joined this group in July 2011 and have come to know, respect and yes, love, people I've never even met and I'm sure you will too.
Take each day as it comes and celebrate small victories. This next directive is a tough one but it's important NOT to let the cancer consume your every conversation. Talk about the fun times you've enjoyed together and with others and try to still have those fun times as long as strength allows.
Hugs to you, my new friend
Rita0 -
Hi,
First let me say welcome
Hi,
First let me say welcome to this family. It sounds like you need to get more information and have a second opinion. Where is your dad being treated? and what tests have they done already - as Eric said it is important to determine if your dad has esphageal cancer that has metastised to the pancreas, or pancreatic cancer that has metastised to the esphagous, or if he has both espohageal and pancreatic cancer. If the cancer has metastised then unfortunately surgery is no longer an option but you need to find out those basic facts. Also, he should have his tumor tested for the HERR 2 gene. Unfortunately because of his current medical condition some of his treatment options are going to be limited and great care will need to be given to the type of chemotherapy drugs administered because many of them have highly toxic effects on the kidneys. You really need to have a top notch oncologist and cancer center working on your dad's team.
I too had a father who was 78 when he was diagnosed with Stage III EC. First let me say it is okay to cry and feel like a little girl again – get it out when you need too and scream and yell too if it will help. I remember holding my phone in my hand when my dad called me with the news and I was in shock and numb. I kept thinking this can’t be happening not to my strong active dad who we always thought would be around well past his 100th birthday. But there I was hearing his voice telling me honey this is a bad cancer but I am going to beat it as soon as I know more information I will let you know. Honestly, I didn’t have a clue what esophageal cancer was, its warning signs or any of the knowledge that I have today after the journey we embarked on back in the winter of 2009. And as I learned more I stopped crying as much and got angry (the doctors had ignored his complaints about swallowing and pain for over 2 years --- told him to chew his food more and even put a pill camera in to do a stomach test but never ordered an endoscopy) and then went into rescue mode. Ok I am a type A and my dad was definitely a type A, retired military officer, engineer, nuclear physicist so he asked questions but didn’t always like the answers when they were not what he wanted to hear. And I know he saw himself losing control of his life and he was determined not to let the cancer control his life. So we would butt heads from time to time.
This journey for a spouse is absolutely heartbreaking and I know that the loss of a parent isn’t the same --- as adult children our relationships with our parents are different and it is hard to see them need so much help. But the pain is very real and the loss and fear of loss is very acute. Don’t pretend it doesn’t exist, but to support your dad you have to be supportive and not bring the gloom into the room, bring love and support even when they are making you crazy and being mean. Try to value and cherish the time you have and make time for life. Try not to let the cancer define who they are or how you treat each other. The cancer is real but it isn’t the man your dad is.
From a practical perspective, try to see if your dad will list you as an authorized individual to receive information from the doctor and as someone allowed to discuss his case with the doctor. He should have all his caregivers and other close family members on the list (do you have other brother and sisters – perhaps them as well.) And someone other than just your mom should go to the appointments. Believe me it is hard to absorb everything being said during the appointments and each person will hear something different. If it is available to you try and register for FMLA to help out with your dad (you can use FMLA in blocks of time or one day here and other there to help out with appointments). This will allow you to use sick and vacation time to care for your dad and provide you flexibility and protection at work, it was a godsend for me and I am so thankful I was able to get the FMLA in place at the beginning of his illness.
If you would like to chat please private message me and I will give you my number to call. While I hated the cancer and I hate the fact that it took my dad from us way too early I was blessed with 18+ months with my dad after he was diagnosed and we lived and crammed as many memories during that time that will be with me for a lifetime. We suffered hell as well and many medical setbacks so I don’t want to sugar coat this. But we all knew the deep love we had for each other and that precious time with those we lose is more valuable than gold and learned that great motto from another former member of this board Kitten aka Catherine L. Simons - "Life is not waiting for the storm to pass, it's about learning how to dance in the rain."
I wish you luck in this journey.
Best wishes,
Cindy0 -
Naltrexone very informativelyndez said:Hello I know exactly what
Hello
I know exactly what you`re going through. My husband (48 years old)was diagnosed with stage 4 adenocarcinoma of the esophagus with liver metastases in January 2011. We were given a very grim prognosis, here we are 11 months later and the PET scan in October, 2011 showed complete regression of the esophagus and liver. NEVER GIVE UP. Number one - consider changing his diet by reducing sugar intake and eat lots of vegetables(I also juice fruits and vegetables everyday) Number two - talk to his family doctor about low dose Naltrexone which has been shown to stop cancer especially all the cancers of the gastro intestinal such as the esophagus, liver pancreas etc (you can check the web at ldninfo.org). Number 3 - See a naturopathic doctor and get Vitamin C IV (my husband was getting 85000mg infused twice weekly, he is now getting it once per week). My husband is also taking many supplements to help boost his immune system. He did 10 rounds of radiation and 6 treatments of chemo Cisplatin and 5FU every 4 weeks, he continued working during radiation and chemo and feels very good. A positive attitude and the will to fight can do wonders. As I said never give up hope, there are survivors out there.
My husband also stage 4 with mets to liver. It may be too late as we are on hospice but I can visualize this helping so I am going to contact two oncologists we have seen- the one who treated my husband and the one we went to for 2nd opinion after the grim news of the liver mets. I know it is a shot in the dark but have nothing to lose at this point. 1 major obstacle I found was that one should not be taking opiates and currently Tim on morphine and would need an effective drug for pain. Can you give any more suggestions as to what I could do to make sure this happens? I know we would have to give up hospice but would probably give it a shot if we could find someone to treat us with this naltrexone. Thak you much peggy0 -
Hugs to you and your familyFreida said:It's wonderful that you want
It's wonderful that you want to be so supportive of your Dad. It is so scary isn't it. My husband was just diagnosed as well and it is difficult waiting and wondering. I am 58 and spend half my time in tears as well. Half of me wants to hurry up and get a plan of action and get started. The other half of me wants to put off this process that will change our lives so much (though I know that is not a choice). This seems like a wonderful place for support and advice, and there are several of us newbies here. Hopefully we can support each other. Hugs to you and your family.
Freida
Hugs to you and your family too Freida. Yes, I'm so glad I've found this place to discuss these issues and concerns. I am sorry to hear about your husband and I hate waiting and wondering too. Keep in touch and try to stay strong. Let's all try to get through this together!0 -
Hi Eric:chemosmoker said:welcome is a hated way to have to say hello here...
CALA,
So you need to know the STAGE of his cancer, and is the pancreatic or EC the primary?
There's so much to know and it IS scary, but TOGETHER, we somehow get through this day by day and become family and friends like NO other I have ever had.
William is our decide (almost) survivor and granddad here so he will post to you here soon, too. Sheri saved my pain level and life with HER experience loosing Steve and with steriods and HOW to call and when to get hospice (IF stage IV you DO NOT wait) and Terry and so may I will hat t start forgetting names and didn't want to hurt feelings. There is a LOT of experience here, so hang on, and keep reading here, and posting again, and again, and PLEASE stick around with us join our family!!
I can try to help, And I WILL all I can I have 6 months so far and it's s roller coaster for everyone no one is immune fro ANY of the pain or surprises and lack of control (the WORST part by ten times))....
Welcome hate to say welcome to this EC as it is a MONSTER and robs you of everything normal. But the difference in a stage II or like me a Stage IVB is BIG for even posting more, and others are waiting to post when you know these numbers....
GLAD you are here and found us my wife and I were VERY alone and scared by all the horrid stats on the internet so THIS is home daily now, and there are many of us although we have already lost a few, some to chemo, some to the EC. You can't beat stage IV EC.
God bless and what's your name?
Eric
My name is Dawn
Hi Eric:
My name is Dawn Marie and I thank you for responding to my post and for your encourging words. Thank you also for you blessings!!! TO ALL OF YOU...WORDS CAN NOT EXPRESS HOW TRULY TOUCHED I AM. I FEEL BLESSED ALREADY JUST TO HAVE FOUND ALL OF YOU. I am writing down all your suggestions and questions to ask the doctors. My Dad has his EUS test this Wednesday at 6:45am so we should know more about his staging and if his pancreas has cancer as well after this producure. I feel sort of bad not being able to help assit some of you since I'm new to this but I can be a shoulder to lean on or anything else please feel free to reach out to me.
Dawn Marie - for Calabrian Fighter Joe0 -
Hi Rita:ritawaite13 said:Hi and welcome
It's so helpful if we have a first name so we can send our messages and prayers in the right direction. I can only echo what others have already said that this is a beastly disease like no other. If it's not stage IV it is survivable though and that's what you need to focus on. Even at Stage IV some can manage to live with it for quite awhile. Definately get a second and maybe a third opinion and make sure you take good notes. Sometimes it's actually a good thing to take someone else along to the appointments to be the recorder. You have come to the best site on earth for information and support. I just joined this group in July 2011 and have come to know, respect and yes, love, people I've never even met and I'm sure you will too.
Take each day as it comes and celebrate small victories. This next directive is a tough one but it's important NOT to let the cancer consume your every conversation. Talk about the fun times you've enjoyed together and with others and try to still have those fun times as long as strength allows.
Hugs to you, my new friend
Rita
My name is Dawn
Hi Rita:
My name is Dawn Marie, thank you, and any prayers would be greatly appreciated and I will also do the same. We are going to get a second opinion the hard part is still getting the 1st opinion out of the way. Still working on it. Dad's EUS test is this Wed and we should have his staging pretty much completed. I suggested to my father's primary physican going to Robert Wood Johnson or Sloan Kettering (wonderful cancer centers) and his reply was...."for a second opionion and peace of mind yes but he said traveling that far would bring my father down even quicker". I checked annual caseloads for the Hospital my father would be going to now "Simon G Cancer Center @ Morristown Memorian Medical Center in Morristown, NJ" and they have only performed this surgery 20-25 times in 2008 verses Robert Woods 42 cases and Sloan Ketterings 162 cases. I am still scheduling for a second opinion with Robert Wood because I feel my Dad deserves the best. If the best agrees with the same plan as our Hospital then I guess we will stay close to home. It's just soo much.
Thank you for reminding me to remember and talk about the good times! I truly needed that!0 -
Hi Cindy:unclaw2002 said:Hi,
First let me say welcome
Hi,
First let me say welcome to this family. It sounds like you need to get more information and have a second opinion. Where is your dad being treated? and what tests have they done already - as Eric said it is important to determine if your dad has esphageal cancer that has metastised to the pancreas, or pancreatic cancer that has metastised to the esphagous, or if he has both espohageal and pancreatic cancer. If the cancer has metastised then unfortunately surgery is no longer an option but you need to find out those basic facts. Also, he should have his tumor tested for the HERR 2 gene. Unfortunately because of his current medical condition some of his treatment options are going to be limited and great care will need to be given to the type of chemotherapy drugs administered because many of them have highly toxic effects on the kidneys. You really need to have a top notch oncologist and cancer center working on your dad's team.
I too had a father who was 78 when he was diagnosed with Stage III EC. First let me say it is okay to cry and feel like a little girl again – get it out when you need too and scream and yell too if it will help. I remember holding my phone in my hand when my dad called me with the news and I was in shock and numb. I kept thinking this can’t be happening not to my strong active dad who we always thought would be around well past his 100th birthday. But there I was hearing his voice telling me honey this is a bad cancer but I am going to beat it as soon as I know more information I will let you know. Honestly, I didn’t have a clue what esophageal cancer was, its warning signs or any of the knowledge that I have today after the journey we embarked on back in the winter of 2009. And as I learned more I stopped crying as much and got angry (the doctors had ignored his complaints about swallowing and pain for over 2 years --- told him to chew his food more and even put a pill camera in to do a stomach test but never ordered an endoscopy) and then went into rescue mode. Ok I am a type A and my dad was definitely a type A, retired military officer, engineer, nuclear physicist so he asked questions but didn’t always like the answers when they were not what he wanted to hear. And I know he saw himself losing control of his life and he was determined not to let the cancer control his life. So we would butt heads from time to time.
This journey for a spouse is absolutely heartbreaking and I know that the loss of a parent isn’t the same --- as adult children our relationships with our parents are different and it is hard to see them need so much help. But the pain is very real and the loss and fear of loss is very acute. Don’t pretend it doesn’t exist, but to support your dad you have to be supportive and not bring the gloom into the room, bring love and support even when they are making you crazy and being mean. Try to value and cherish the time you have and make time for life. Try not to let the cancer define who they are or how you treat each other. The cancer is real but it isn’t the man your dad is.
From a practical perspective, try to see if your dad will list you as an authorized individual to receive information from the doctor and as someone allowed to discuss his case with the doctor. He should have all his caregivers and other close family members on the list (do you have other brother and sisters – perhaps them as well.) And someone other than just your mom should go to the appointments. Believe me it is hard to absorb everything being said during the appointments and each person will hear something different. If it is available to you try and register for FMLA to help out with your dad (you can use FMLA in blocks of time or one day here and other there to help out with appointments). This will allow you to use sick and vacation time to care for your dad and provide you flexibility and protection at work, it was a godsend for me and I am so thankful I was able to get the FMLA in place at the beginning of his illness.
If you would like to chat please private message me and I will give you my number to call. While I hated the cancer and I hate the fact that it took my dad from us way too early I was blessed with 18+ months with my dad after he was diagnosed and we lived and crammed as many memories during that time that will be with me for a lifetime. We suffered hell as well and many medical setbacks so I don’t want to sugar coat this. But we all knew the deep love we had for each other and that precious time with those we lose is more valuable than gold and learned that great motto from another former member of this board Kitten aka Catherine L. Simons - "Life is not waiting for the storm to pass, it's about learning how to dance in the rain."
I wish you luck in this journey.
Best wishes,
Cindy
I am so sorry for
Hi Cindy:
I am so sorry for you loss. I can tell you are a strong woman which I'm sure your father has instilled in you...what a wonderful gift that will carry you along way. Thank you for your warm welcome!
My Dad had a regular edoscope done and biopsy which found the tumor and cancer. He had a PET test done which lite up the cancer in the esophagus and lite up the head of the pancreas. My Dad is going this wednesday to have an EUS (endoscope ultrasound) done to determine the demension of the tumor and if the pancreas is cancerous. Then we will have a better understanding of what stage we are in. I will find out about the HERR2 gene...if it hasn't been tested yet...thanks for that. I have read about it before but I will have to check again to see what it is all about but I know it was important to find out just can't remember why right now.
My Dad has listed myself and 3 of my siblings as being able to receive information on his behalf. My mother is not in too good of health herself so me and my two sisters have been rolling up our sleeves and trying to figure out which way is up and which way is down. I had a meeting with an HR representative on Wednesday before Thanksgiving to go over my options for FMLA so I'm trying to think of everything practical to line up before more unforseen circumstances are thrown my way.
We are basically just playing the waiting game right now. I'm not sure if I'm right in thinking this way but we can't go get a second opinion if we haven't really gotten the 1st fully determined yet. We live in New Jersey. The closet hospital is Simon G. Cancer Center @ Morristown Memorial Hospital in Morristown, NJ. These are the doctors we are dealing with now. I have checked their annual caseloads and they perform about 20-25 EC surgeries per year. I would like to take my father to Robert Wood Johnson in New Brunswick, NJ or Sloan-kettering in NY (both top Cancer Centers) but his primary physicaian said the travel alone would be too much for my father. Sloan Kettering takes 4-5 weeks to even get a consutation. Robert wood is a little closer and less time for a consult. I am trying to push my family to come to an agreement to get a second opionion from this cancer center at Robert Wood but everyone just wants to wait to see what this EUS test shows.
I don't know Cindy. I feel like time is just ticking away and if and when it's time for a second opinion that will be even more time wasted gathering all tests and making and waiting for the appointment. Plus I believe Robert wood will not see my father if he is already receiving treatment at another hospital but right now he isn't.
Again, I thank you for your kind words and encourgement. You and everyone on this site are my hope and my families hope. You shine a little light in our day to keep the gloves on and keep punching! If I forgot to answer any of your questions I am sorry...please feel free to ask again. I'm just soo flustered.
I will try my hardest to learn how to dance in the rain rather than wait for the storm to pass. Thank you!0
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- 446 Bladder Cancer
- 308 Bone Cancers
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- 28.5K Breast Cancer
- 395 Childhood Cancers
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- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 671 Leukemia
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- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 234 Multiple Myeloma
- 7.1K Ovarian Cancer
- 56 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.4K Prostate Cancer
- 1.2K Rare and Other Cancers
- 534 Sarcoma
- 719 Skin Cancer
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- 190 Testicular Cancer
- 1.5K Thyroid Cancer
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