headed out to oncologist on tuesday

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peachycream
peachycream Member Posts: 33
edited March 2014 in Esophageal Cancer #1
So we will be traveling from Mississippi to Houston Texas so my dad can be seen at M.D. Anderson. The process is just getting started and we are scared to death!

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  • K_ann1015
    K_ann1015 Member Posts: 500
    #2
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    Welcome!---sorry we need to
    Welcome!---sorry we need to meet this way...

    I am a daughter too---my dad, Kenny went to Duke and had chemo in Sept-Oct and then surgery in Dec '09. He is doing a clean up chemo and doing well ---just having trouble gaining weight.

    My parents had to "travel" to go the Duke too. Just take a deep breath---get ready to be overwhelmed with information & emotion maybe at times. But realize that he is as scared as you are! Remember to see things with a sense of humor and with HOPE---not just dread & fear! Pray for him---WITH him if he is so inclined... Get him something at choosehope.com
    ( http://www.choosehope.com/category/esophageal-cancer-periwinkle ).

    Also--don't forget to have a little fun while you are there--take pictures- (He may not feel like it later with chemo & such).

    Laughter actually helps healing on a cellular level!

    Keep posting---stay positive. The folks on this site are amazing...this is a scary journey and having someone to talk to that actually has been through it helped me out a whole lot---good luck to you and your dad!
    feeling for you---been there and not done yet!
    Kim
  • unclaw2002
    unclaw2002 Member Posts: 599
    #3
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    From another daughter good
    From another daughter good luck and please feel free to ask any questions you think of. A couple suggestions below to prepare for your trip and while you are in Houston.- I took my dad to Sloan in New York (he lives in New Orleans). Good luck.

    1. Have a notebook to take notes and some sort of folder you can close to accumulate random pieces of paper and all the information you need.
    2. Have all his insurance information and supplemental insurance information --- cards and any referrals necessary. Discuss with your dad who he wants to be able to discuss his medical information with the doctors. If he wants you to be able to advocate he will need to sign a release (this is usually done in the business office not the patient care area) so when giving the insurance information if this is his wish ask the business person for the form so your dad can authorize the sharing of information - perhaps you or other family members.
    3. All the forms and questionaires tend to be overwhelming to the patient --- offer to fill them out for your dad. I spent hours filling out forms.
    3. Bring any and all medicines and vitamins your dad is taking with you.
    4. List all the medications he is taking on a chart, list the name of the med, the dosage and frequency taken and for what (include vitamins and over the counter meds).
    5. Have a list of all his doctors (even non-cancer docs), names, hospital affiliation, numbers, fax, address and email if available.
    6. Write down a synopsis of what led to the diagnosis. If possible have 2 copies of his medical record, diagnosis, evaluation of the biopsy, staging and proposed or contemplated course of treatment. ( 1 for you and one for the doctor to have in case it didn't make it to you dad's file or the docs file)
    7. I know this may seem silly --- but any questions write them down so you don't forget to ask. It is amazing how your brain reacts as you hear some of the things the doctors say and you walk out of the office and say darn I meant to ask that.

    I am sure I am leaving things out but this is a start. Best, Cindy
  • peachycream
    peachycream Member Posts: 33
    #4
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    unclaw2002 said:

    From another daughter good
    From another daughter good luck and please feel free to ask any questions you think of. A couple suggestions below to prepare for your trip and while you are in Houston.- I took my dad to Sloan in New York (he lives in New Orleans). Good luck.

    1. Have a notebook to take notes and some sort of folder you can close to accumulate random pieces of paper and all the information you need.
    2. Have all his insurance information and supplemental insurance information --- cards and any referrals necessary. Discuss with your dad who he wants to be able to discuss his medical information with the doctors. If he wants you to be able to advocate he will need to sign a release (this is usually done in the business office not the patient care area) so when giving the insurance information if this is his wish ask the business person for the form so your dad can authorize the sharing of information - perhaps you or other family members.
    3. All the forms and questionaires tend to be overwhelming to the patient --- offer to fill them out for your dad. I spent hours filling out forms.
    3. Bring any and all medicines and vitamins your dad is taking with you.
    4. List all the medications he is taking on a chart, list the name of the med, the dosage and frequency taken and for what (include vitamins and over the counter meds).
    5. Have a list of all his doctors (even non-cancer docs), names, hospital affiliation, numbers, fax, address and email if available.
    6. Write down a synopsis of what led to the diagnosis. If possible have 2 copies of his medical record, diagnosis, evaluation of the biopsy, staging and proposed or contemplated course of treatment. ( 1 for you and one for the doctor to have in case it didn't make it to you dad's file or the docs file)
    7. I know this may seem silly --- but any questions write them down so you don't forget to ask. It is amazing how your brain reacts as you hear some of the things the doctors say and you walk out of the office and say darn I meant to ask that.

    I am sure I am leaving things out but this is a start. Best, Cindy

    Thank you. We have a folder
    Thank you. We have a folder of stuff we have been collecting. He actually had a stroke about six years ago and lost his speech. He can talk, but says the same few words over and over, so my mom and I will be doing all the forms and talking to the doctors. My dad is an amazing man with such a positive attitude! After he recovered from his stroke (amazing recovering except speech and the use of his arm), he began cooking again, mowing, driving, running errands, etc. He didn't let his speech get him down and has been so happy. Even after being diagnosed with cancer, I could tell he was saying, "oh well! I have a happy life and I'm going to live it as long as I can." :) I hate to see him go through all of this... his mother passed away when she was 62 from lymphoma, but he said he is ready and can get through this. He is actually excited about taking a trip to Texas. lol. So hopefully with his attitude, and my mom and I trying to stay positive, we can get through this.
  • Unknown
    Unknown
    #5
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    This comment has been removed by the Moderator
  • peachycream
    peachycream Member Posts: 33
    #6
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    unknown said:

    This comment has been removed by the Moderator

    Thank you. I have gone
    Thank you. I have gone through a lot in my life and wouldn't have made it through without my faith. It's harder for me because I have suffered from anxiety disorder and depression since I was a child and have been on medication since I was 15. After my dad's stroke we were told thew worst. He was in a coma and we were told if he survived that he would have to live in a nursing home. I almost had a mental breakdown, but God got me through, and my dad has done AMAZING. Walking, cooking, driving, doing normal activities! It did mess up his speech and he can't communicate (we do a lot of charades!), but he has always been a jolly man with a positive attitude. The stroke also caused him to start having seizures, and I went through a very dark depression that I didn't think I would make it out of. It was the most horrible thing I have ever experienced, and I'm scared I will go back into that. See, with my anxiety disorder, I do not travel. Home is my "safe place", and I don't like to go to far, nor do I like to feel "trapped" somewhere, like I can't come home if I feel the urge too. Also, his stroke caused me to have intense anxiety with hospitals. With the birth of a niece, I had a horrible panic attack in the hospital and had to leave. I have yet to step back in a hospital, and now I will practically be living in one! And not only that, but 1/2 hours from home. I'm terrified that my anxiety and depression will come back and I won't make it. As long as I can keep my mental health in check, I think I can do this and be positive for my family. I know my mom needs me (my dad, too, but he is in great spirits and is looking at the trip as a vacation).

    Thank you for the list of question and the verses. We need all the prayer we can get!
  • judyloo
    judyloo Member Posts: 40
    #7
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    peachycream said:

    Thank you. I have gone
    Thank you. I have gone through a lot in my life and wouldn't have made it through without my faith. It's harder for me because I have suffered from anxiety disorder and depression since I was a child and have been on medication since I was 15. After my dad's stroke we were told thew worst. He was in a coma and we were told if he survived that he would have to live in a nursing home. I almost had a mental breakdown, but God got me through, and my dad has done AMAZING. Walking, cooking, driving, doing normal activities! It did mess up his speech and he can't communicate (we do a lot of charades!), but he has always been a jolly man with a positive attitude. The stroke also caused him to start having seizures, and I went through a very dark depression that I didn't think I would make it out of. It was the most horrible thing I have ever experienced, and I'm scared I will go back into that. See, with my anxiety disorder, I do not travel. Home is my "safe place", and I don't like to go to far, nor do I like to feel "trapped" somewhere, like I can't come home if I feel the urge too. Also, his stroke caused me to have intense anxiety with hospitals. With the birth of a niece, I had a horrible panic attack in the hospital and had to leave. I have yet to step back in a hospital, and now I will practically be living in one! And not only that, but 1/2 hours from home. I'm terrified that my anxiety and depression will come back and I won't make it. As long as I can keep my mental health in check, I think I can do this and be positive for my family. I know my mom needs me (my dad, too, but he is in great spirits and is looking at the trip as a vacation).

    Thank you for the list of question and the verses. We need all the prayer we can get!

    My daughter
    Hi "peachycream" do not feel alone in your struggle with depression and panic disorder - a year after Steve was diagnosed and had treatment (including surgery about 2 hours away) for EC my daughter now 26 suffered symptoms very similar to yours. Other than the ability to step into a hospital (here in our city) she reacts and feels much like you, especially traveling and having that safe place. Kate went into counseling and was put on an antidepressant as well .......and it helped enormously! I do not know how you feel about counseling or medications but it literally took Kate out of that "black hole" and she could not only function again but embraced life and happiness. At least get yourself to someone to discuss this if you haven't allready; you can treat this at any time and become healthier mentally for your Dad and others during this time but more importantly for yourself. If I had it to do over again I would have had Kate seen at the very beginning of this journey! Prayers to all,

    Judy
  • Ellie_E
    Ellie_E Member Posts: 50
    #8
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    peachycream said:

    Thank you. I have gone
    Thank you. I have gone through a lot in my life and wouldn't have made it through without my faith. It's harder for me because I have suffered from anxiety disorder and depression since I was a child and have been on medication since I was 15. After my dad's stroke we were told thew worst. He was in a coma and we were told if he survived that he would have to live in a nursing home. I almost had a mental breakdown, but God got me through, and my dad has done AMAZING. Walking, cooking, driving, doing normal activities! It did mess up his speech and he can't communicate (we do a lot of charades!), but he has always been a jolly man with a positive attitude. The stroke also caused him to start having seizures, and I went through a very dark depression that I didn't think I would make it out of. It was the most horrible thing I have ever experienced, and I'm scared I will go back into that. See, with my anxiety disorder, I do not travel. Home is my "safe place", and I don't like to go to far, nor do I like to feel "trapped" somewhere, like I can't come home if I feel the urge too. Also, his stroke caused me to have intense anxiety with hospitals. With the birth of a niece, I had a horrible panic attack in the hospital and had to leave. I have yet to step back in a hospital, and now I will practically be living in one! And not only that, but 1/2 hours from home. I'm terrified that my anxiety and depression will come back and I won't make it. As long as I can keep my mental health in check, I think I can do this and be positive for my family. I know my mom needs me (my dad, too, but he is in great spirits and is looking at the trip as a vacation).

    Thank you for the list of question and the verses. We need all the prayer we can get!

    You are not alone
    Hi Peachycream, I know what you're going through. About 10 years ago I started having panic attacks and was diagnosed with depression. I spent a whole year in what I call my black hole period. I saw a psychiatrist who treated me with behavior modification therapy and medication. For a long time, I was able to keep the panic at bay, but when my husband, Jim, was diagnosed last September with stage IV EC, the panic and anxiety came back big time. Jim is my "safe person" and the thought of losing him terrifies me. But peachycream, we have to reach deep down and find the strength and the courage to help our loved ones fight this horrible disease. When I feel a panic attack coming on, I tell myself that Jim was always there for me during my black hole period and now I need to be there for him. Know that you have many supportive friends on this site and all of us are praying for you and your family. Remember to breathe!

    Ellie
  • Unknown
    Unknown
    #9
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    peachycream said:

    Thank you. I have gone
    Thank you. I have gone through a lot in my life and wouldn't have made it through without my faith. It's harder for me because I have suffered from anxiety disorder and depression since I was a child and have been on medication since I was 15. After my dad's stroke we were told thew worst. He was in a coma and we were told if he survived that he would have to live in a nursing home. I almost had a mental breakdown, but God got me through, and my dad has done AMAZING. Walking, cooking, driving, doing normal activities! It did mess up his speech and he can't communicate (we do a lot of charades!), but he has always been a jolly man with a positive attitude. The stroke also caused him to start having seizures, and I went through a very dark depression that I didn't think I would make it out of. It was the most horrible thing I have ever experienced, and I'm scared I will go back into that. See, with my anxiety disorder, I do not travel. Home is my "safe place", and I don't like to go to far, nor do I like to feel "trapped" somewhere, like I can't come home if I feel the urge too. Also, his stroke caused me to have intense anxiety with hospitals. With the birth of a niece, I had a horrible panic attack in the hospital and had to leave. I have yet to step back in a hospital, and now I will practically be living in one! And not only that, but 1/2 hours from home. I'm terrified that my anxiety and depression will come back and I won't make it. As long as I can keep my mental health in check, I think I can do this and be positive for my family. I know my mom needs me (my dad, too, but he is in great spirits and is looking at the trip as a vacation).

    Thank you for the list of question and the verses. We need all the prayer we can get!

    This comment has been removed by the Moderator
  • peachycream
    peachycream Member Posts: 33
    #10
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    Ellie_E said:

    You are not alone
    Hi Peachycream, I know what you're going through. About 10 years ago I started having panic attacks and was diagnosed with depression. I spent a whole year in what I call my black hole period. I saw a psychiatrist who treated me with behavior modification therapy and medication. For a long time, I was able to keep the panic at bay, but when my husband, Jim, was diagnosed last September with stage IV EC, the panic and anxiety came back big time. Jim is my "safe person" and the thought of losing him terrifies me. But peachycream, we have to reach deep down and find the strength and the courage to help our loved ones fight this horrible disease. When I feel a panic attack coming on, I tell myself that Jim was always there for me during my black hole period and now I need to be there for him. Know that you have many supportive friends on this site and all of us are praying for you and your family. Remember to breathe!

    Ellie

    Thanks everyone. I know I
    Thanks everyone. I know I can get through this with lots of prayer and support I'm glad I found this site!

    I found out we will be gone Tuesday-Friday to get him registered and have tests ran. I will update when we find out something. I have heard wonderful things about M.D. Anderson, so I'm hopeful!
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #11
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    unknown said:

    This comment has been removed by the Moderator

    Best of luck to you all
    Hello Peaches,
    I too am a daughter. I was a caregiver for my dad. He recently passed after a long fight with ec which methasized to his liver in December. This is a long and winding road, but you can beat it. There are a lot of folks on here who have. MD Anderson is one of the best places you can go. I too have suffered with anxiety. As long as I take my meds I am good. Take care of yourself, your dad and family will need you. Best of luck and know that we are all praying for you here. Keep us posted.
    Tina

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