New and nervous--Any suggestions?

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AngieD
AngieD Member Posts: 493
in Esophageal Cancer #1
I just joined this group this month and have been amazed at the loving, caring community here and the wealth of information shared. We had never even heard of anyone having esophageal cancer when my husband was diagnosed as Stage IV in late June of this year. He will finish his 4th round of chemo on Monday and have his first PET scan since diagnosis on Tuesday. We'll find out the results when we see the oncologist on Friday. I had finally become somewhat good at the "enjoy each day, one day at a time, don't look too far ahead" thing. But, now as the test approaches, I get more anxious by the minute. I know many of you have been through this many times and no doubt feel the same way, but I was just wondering if anyone has any tips or tricks to help keep from freaking out through the next week?
Angie

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  • Joel C
    Joel C Member Posts: 174
    #2
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    We can learn from our pets
    Hi Angie,

    Like you and Larry, Tammy and I have been through our share of waiting for results. I was originally diagnosed 2B (T2N1M0), received chemo, radiation and then the MIE. At nine months out got the word I had a recurrence in a distant node. The way I get through the waiting is I’ve finally came to the realization that no matter how much I worry and how anxious I get it doesn’t change a thing. At this point it’s going to be what it’s going to be. I agree it goes against nature for a person to live like this but with EC we have no choice. It really goes against nature to live like this when we have two children in college, big jobs, big house with a bigger mortgage and many other things going on but we just can’t change things.


    This is going to sound like a crazy analogy but I try to think like my four year old black lab (Colby). We live in a home that abuts about 2000 acres of conservation land and Colby thinks he owns every acre. He rules the forest with an iron paw and has the scars to prove it. He may just be the happiest creature on earth. The funny thing is if we moved into a box under a bridge he would be just as happy there. My advise Angie is to live in the moment and don’t beat yourself up over things you have no control over.

    Joel
  • mruble
    mruble Member Posts: 174
    #3
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    Scanxiety
    Hi Angie -
    What you're feeling is absolutely normal. We've all been there and all find our own ways to cope. The what Ifs can drive you crazy! When my husband was in the hospital and suffering from all kinds of things and going through all sorts of testing, a dear friend sent me an article about waiting to worry. It talked about how worry robs us of the pleasure of today and how completely useless worry really is. The article struck such a chord with me and since then I have actively practiced waiting to worry ( and it does take practice)!
    You and your husband will be in my prayers. Please let us know the test results when you have them.
    Mary
  • mruble
    mruble Member Posts: 174
    #4
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    mruble said:

    Scanxiety
    Hi Angie -
    What you're feeling is absolutely normal. We've all been there and all find our own ways to cope. The what Ifs can drive you crazy! When my husband was in the hospital and suffering from all kinds of things and going through all sorts of testing, a dear friend sent me an article about waiting to worry. It talked about how worry robs us of the pleasure of today and how completely useless worry really is. The article struck such a chord with me and since then I have actively practiced waiting to worry ( and it does take practice)!
    You and your husband will be in my prayers. Please let us know the test results when you have them.
    Mary

    Link
    Here's the link to the article I mentioned in case you'd like to read it. http://m.gutenberg.org/ebooks/search.mobile/?default_prefix=titles

    Mary
  • Unknown
    Unknown
    #5
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    This comment has been removed by the Moderator
  • Cora11
    Cora11 Member Posts: 173
    #6
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    Joel C said:

    We can learn from our pets
    Hi Angie,

    Like you and Larry, Tammy and I have been through our share of waiting for results. I was originally diagnosed 2B (T2N1M0), received chemo, radiation and then the MIE. At nine months out got the word I had a recurrence in a distant node. The way I get through the waiting is I’ve finally came to the realization that no matter how much I worry and how anxious I get it doesn’t change a thing. At this point it’s going to be what it’s going to be. I agree it goes against nature for a person to live like this but with EC we have no choice. It really goes against nature to live like this when we have two children in college, big jobs, big house with a bigger mortgage and many other things going on but we just can’t change things.


    This is going to sound like a crazy analogy but I try to think like my four year old black lab (Colby). We live in a home that abuts about 2000 acres of conservation land and Colby thinks he owns every acre. He rules the forest with an iron paw and has the scars to prove it. He may just be the happiest creature on earth. The funny thing is if we moved into a box under a bridge he would be just as happy there. My advise Angie is to live in the moment and don’t beat yourself up over things you have no control over.

    Joel

    Joel
    Joel, this post was so right on inspiring. My husband Keith, who has EC we often talk that way about our border collies. They live so in the moment and sometimes I think it is a gift to not think about the future. Lately, he has been shuffled back and forth from and to a friend of mine's house for the days we have to be away doing tests etc. He just goes with the flow... so adaptable . He really is inspiring. It is certainly my goal to be in that frame of mind most of the time. Just makes sense for living in and surviving a crisis- and it's good for the person doing the healing. We also live in the state forest. I love hiking over there- except not during the gun deer hunt!
    Cora
  • AngieD
    AngieD Member Posts: 493
    #7
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    unknown said:

    This comment has been removed by the Moderator

    Thank you SO much
    I can't tell you how much calmer I feel after all your thoughtful comments!

    Joel, I agree with Cora about your dog being inspiring. There have been so many times in the last 2 days that I've thought of him just being happy and contented where ever he is--and then I am too.

    Mary, have you and your husband been skydiving? I noticed a new picture. I couldn't get the link to work for the "Waiting to Worry" article. But in the process of trying to Google it, I found several good articles. Here's one I liked:
    http://tinyurl.com/3syhrz9 If that isn't what you were referring to, please tell me how to find it.

    Sherri, my husband, Larry, is being treated in our town, Lawrence, KS, where the University of KS is located. He had an EUS and a second opinion at the KU Medical Center which is in Kansas City and where our daughter is a pharmacist. The oncologist there and my daughter and I, from our research, feel like he is getting good first line treatment here, we don't have to travel, and he really likes the oncologist he is seeing--which I think is huge. His chemo has been Oxaliplatin and Xeloda. He's 73 and was in pretty good health and very active before. His initial tests showed lymph nodes near the tumor as well as supra clavicular ones. Since the first week of chemo, he hasn't had any more swallowing problems or lost any more weight. His main side effect from the chemo is fatigue plus, of course, the cold sensitivity from the Oxaliplatin. We're trying to make short term goals--hopefully a trip the end of October. Further out: We have 6 grandchildren and our son and his wife are expecting TWINS in March and then June 2013 will be our 50th wedding anniversary.

    Thank you all so much! I'll let you know when we get the PET results.

    Angie
  • mardigras
    mardigras Member Posts: 215 Member
    #8
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    A new caregivers prospective
    Hi Angie,
    I can't help much except to sympathise and pray for you both.
    I have just started this journey with my husband who was diagnosed with EC three weeks ago.
    We saw the surgeon, who says that the tumour is massive.
    We see the oncologist on Friday and treatment with chemo will start after that. He too has a suspicious node close to the tumour and that's why they decided on Chemo before the op.
    Hubby doesn't know what to exspect and neither do I. We are both scared witless, but I try not to show him that I am.
    I've read all the replies to your post and it helps a lot to know you are not alone.
    I wish my husband would subscribe to the 'worry doesn't help' theory. He is so down at the moment and I can't lift his black mood at all.
    I'll watch these posts and hope for a good result for you.
    Take care, Hugs
  • AngieD
    AngieD Member Posts: 493
    #9
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    mardigras said:

    A new caregivers prospective
    Hi Angie,
    I can't help much except to sympathise and pray for you both.
    I have just started this journey with my husband who was diagnosed with EC three weeks ago.
    We saw the surgeon, who says that the tumour is massive.
    We see the oncologist on Friday and treatment with chemo will start after that. He too has a suspicious node close to the tumour and that's why they decided on Chemo before the op.
    Hubby doesn't know what to exspect and neither do I. We are both scared witless, but I try not to show him that I am.
    I've read all the replies to your post and it helps a lot to know you are not alone.
    I wish my husband would subscribe to the 'worry doesn't help' theory. He is so down at the moment and I can't lift his black mood at all.
    I'll watch these posts and hope for a good result for you.
    Take care, Hugs

    Thank you and welcome, Mardigras
    Thank you for your prayers. I'll certainly add you and your husband to my prayer list.

    And welcome to the world here that none of us expected to be in. You'll find lots of caring people who are making the same journey.

    The first few weeks on this road are staggering--the shock of the diagnosis and the blur of scheduling appointments and tests, and the sense that your world has turned upside down. I'm still a rookie at all this, but here are a few things that helped me:

    1)The oncologist office has a number of booklets from the American Cancer Society filled with information on chemo, when someone you love has cancer, for the patient, for families, etc. I also got several books from Amazon. I'll look them up, if you're interested.

    2)Realizing that my husband's cancer is HIS cancer and he gets to choose how he deals with it. I'm one who feels some measure of control by researching and gathering as much information as possible. Him, not so much. Larry prefers to just trust his oncologist, get through the treatment, and spend his time reading about and researching or pursuing other interests.

    3) We both have found it helpful to share what is going on with family and friends. Their caring and prayers have been wonderful.

    4) On the advice of some friends and our PCP, we both started taking an anti-depressant. There is just so much information and emotions to suddenly process that a little chemical help can be our friend.

    5) Document everything. Keep a running list of questions to ask the oncologist. Take notes at each visit. We have a medication sheet where Larry can check off each medication as he takes it. Also, there is a place to write PRN meds taken, how many glasses of non-caffeine liquid drunk, how many saline mouth rinses done, and any special comments on how he is feeling. It was a little rocky at first getting him to do it, but he eventually came to see how useful it was to have with us at appointments. I also keep copies of all his test results.

    I'll be thinking of and praying for you. And, of course, as everyone here says, practice staying in and enjoying the moment.

    Angie
  • mardigras
    mardigras Member Posts: 215 Member
    #10
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    AngieD said:

    Thank you and welcome, Mardigras
    Thank you for your prayers. I'll certainly add you and your husband to my prayer list.

    And welcome to the world here that none of us expected to be in. You'll find lots of caring people who are making the same journey.

    The first few weeks on this road are staggering--the shock of the diagnosis and the blur of scheduling appointments and tests, and the sense that your world has turned upside down. I'm still a rookie at all this, but here are a few things that helped me:

    1)The oncologist office has a number of booklets from the American Cancer Society filled with information on chemo, when someone you love has cancer, for the patient, for families, etc. I also got several books from Amazon. I'll look them up, if you're interested.

    2)Realizing that my husband's cancer is HIS cancer and he gets to choose how he deals with it. I'm one who feels some measure of control by researching and gathering as much information as possible. Him, not so much. Larry prefers to just trust his oncologist, get through the treatment, and spend his time reading about and researching or pursuing other interests.

    3) We both have found it helpful to share what is going on with family and friends. Their caring and prayers have been wonderful.

    4) On the advice of some friends and our PCP, we both started taking an anti-depressant. There is just so much information and emotions to suddenly process that a little chemical help can be our friend.

    5) Document everything. Keep a running list of questions to ask the oncologist. Take notes at each visit. We have a medication sheet where Larry can check off each medication as he takes it. Also, there is a place to write PRN meds taken, how many glasses of non-caffeine liquid drunk, how many saline mouth rinses done, and any special comments on how he is feeling. It was a little rocky at first getting him to do it, but he eventually came to see how useful it was to have with us at appointments. I also keep copies of all his test results.

    I'll be thinking of and praying for you. And, of course, as everyone here says, practice staying in and enjoying the moment.

    Angie

    Thanks for your kind words Angie
    Today is a slightly better day.
    Rob seems a little more positive and has started doing exercises to strengthen his muscles that the weight loss has so weakened. Coupled with diet regime that I started as soon as I got the diagnosis, he has put on over half a kilo in five days. I know it doesn't sound a lot, but he isn't losing anymore weight and he's gained a bit. Whoo hoo.
    Hopefully he will be a bit stronger by the time he gets to surgery and that should help a bit.
    Like you he is keeping a food diary, but he isn't on any medication as yet.
    One of the problems that we have is that we are in Gran Canaria and our Spanish isn't perfect. All of the leaflets are in Spanish.
    I am going to send for some books from Amazon in English, so if you know of any really good ones, I would appreciate the titles please.
    Rob doesn't want anyone to know, so it's a bit difficult for me to have someone to share things with. I am so glad I stumbled in here in the middle of the night. It has saved my sanity and I have talked to some lovely people. Challenged and very brave people.
    Thanks for your kind words. It means a lot to me and I will say a prayer for you and your husband every day.
    I have told Rob that this isn't the party we expected, but now that we're here we might as well dance anyway. He doesn't feel much like dancing yet, but I hope he soon will and you too.
    Take care of each other.
    Hugs Marci X

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