• BILLY22's Avatar

    BILLY22 wrote on Emily435's wall

    Hi Emily

    Tell him we are here to help. I was a healthy 65 year old also, now 15 years later still in good health. I feel you can do the same.

    I had chemo (chemo-Carboplatin & 5FU) and 26 radiation treatments which eradicated my tumor completely. I then had an MIE Esophagectomy at UPMC.

    A 80 year old EC survivor

    1 Comment
    • Emily435's Avatar
      Emily435

      You are an inspiration Billy! It’s so good to know you are here for us. Thanks so much.

      28 days ago
  • BILLY22's Avatar

    BILLY22 wrote on Emily435's wall

    Hi Folks
    We hope we can help guide you thru this maze of EC and give you a jump start to survivorship. The team here has experienced most of the symptoms of EC and can walk you thru then
    hopefully.

    It is important that you get a second opinion and keep good notes and get reports and dups of all scans that is due you if you ask for them.

    Have you been staged and what type of EC do you have?

    Educate yourself on Esophageal cancer and be your own advocate.

    Lets talk.

    A 15 year T3N1M0 survivor

    1 Comment
    • Emily435's Avatar
      Emily435

      Hi Billy. Thanks for reaching out. My husband is the one who has been diagnosed. He has not been staged at this point. We just found out Monday. His first appointment with the oncologist/surgeon will be Oct 30. Hope to know a lot more then. Any help is much appreciated.

      about 1 month ago
  • BoiseB's Avatar

    BoiseB wrote on BILLY22's wall

    Hi Billy
    How are you and your lovely wife doing, I was just thinking about you the other day

  • BILLY22's Avatar

    BILLY22 wrote on Meeker's wall

    Hi Pal

    In just 6 months you made a fast ride from diagnoses thru surgery with few side effects and moving forward.

    Can you tell us a little more in detail what you are staged at and what type operation you had?

    Do you have any symptoms, are you adapting to the new life style? There is life after EC, good luck.

    A stage T3N1M0 survivor going on 15 years.

  • BILLY22's Avatar

    BILLY22 wrote on Sassysprit101's wall

    Dear Sassyspirit ~ My response is addressed to you. I can readily believe the sad story of you and your family with Esophageal Cancer. After reading your letter of yesterday, I felt you at least deserved an answer. It will not be one you want. Since I'm not on the board that makes final decisions at the VA, I cannot speak for them. I am not a medical person, only the wife of an EC survivor, Stage III first diagnosed in 2002. Thank God my husband (Billy22)is still a survivor. The words, "I'm sorry" sound so trite but all of us here at the EC link are always sad to learn that yet someone else's life was lost due to this vicious cancer. Even more, we are sorry that veterans who served in the jungles of Vietnam are now required to enter a maze of endless paperwork in order to beg for benefits. For shame. If anyone reading this has successfully "beat the VA at their own game", I hope they will write and tell us exactly how and when, and how long it took for them to receive any recognition that the death of their loved one to Esophageal Cancer was caused by exposure to Agent Orange.

    I am very serious about contacting your Senator FIRST. If he/she can't get help for you, your own time would be better spent trying to regroup and carry on life without the love of your life. Needless to say I am very skeptical, but if you are going to pursue this and are successful, please share it with us. I would hate to see you supply all the necessary paperwork, and my soul that will be exhaustive, and still the claim be denied, or for that matter, be found on someone's desk months later not yet acknowledged! Once more, pardon my disillusionment, but I'm not happy about the way our EC vets are "treated". Cry

    Loretta

    Wife of Billy22 first DX in Nov. of 2012, EC Stage III (T3N1M0) but thankfully still a survivor

    1 Comment
    • Sassysprit101's Avatar
      Sassysprit101

      Thank you for you kind words and I know it's a struggle. Last year we had our first hearing and we finally got a response which was denied but I'm holding out that they will add it some day. And I will keep trying till it happens. It will definitely be a battle, which it shouldn't be. Glad to hear that your husband is holding on and able to live life.

      about 1 month ago
  • BoiseB's Avatar

    BoiseB wrote on BILLY22's wall

    Hi Billy, How is your wife. as I remember she had the same kind of cancer I have. As I remember you posted a picture of the two of you at a cancer event awhile ago.

    2 Comments
    • BILLY22's Avatar
      BILLY22

      Hey, this is Loretta. I happen to be right beside Billy when he pulled up this message. As he has probably told you, I was diagnosed with Peritoneal Carcinomatosis, a Stage IV cancer, and then when I went to the University of Pittsburgh Med. Ctr. where Billy had his Esophagectomy, I was also diagnosed with Ovarian Cancer, Stage IV. That was in November of 2012. Well since then it's been chemo, Cytoreductive Surgery in July of 2013, then targeted radiation by Cyberknife in 2014, then two more regimens of chemo consisting of Carboplatin/Taxol in years 2015, and 2016. Now my tumor markers are rising again, but I'm taking the summer off even though the cancer isn't! So far I've been platin sensitive so it has served to knock back the cancer for a time. However, my markers began to rise again, in 4 month's time. But I've talked it over with our oncologist. I don't know what I will do. I am a Christian and I know that my times are in His (the Lord's hands) I have peace in my soul even though cancer is at war in my physical body. So my long-distance vision assures me that when I depart this life, I'll wake up in Heaven. Only the body will be placed in the grave, but my spirit is eternal.

      Billy takes me every place I need to go. We work here at home all the time. I just finished making some grape and strawberry jellies last week. We had a tomato patch that has given me a bunch of tomatoes so I'm planning to make salsa. I love to cook. Billy helps me around the house, and it now takes two of us to do what I used to do all by myself. You know about fatigue--I'm constantly tired, but I don't stop. I just go till I can't go anymore, then I sit down.

      I correspond with a lot of people on CSN. org, the American Cancer link (Cancer Survivor's network) I answer on Peritoneal, Ovarian and Esophageal links. It takes a lot of time for me to compile my answers which for the most part are very lengthy. I do a lot of research and try to inform the people of what to expect. I'm not on there for my health, I'm on there for them. Ever since Billy was diagnosed with EC, I said, "If we live through this, we're going to help as many people as possible." We are committed to at least making something good come from this cancer.

      Incidentally, my last CT scan showed a node near the trachea, and who knows what will show up next. Billy tells me that you are Stage IV as well, so I don't have to tell you anything! We just have to thank the Lord for the time He has given us, and remember that a better day awaits. Of course, there's no ideal time to leave those we love, but I can't dictate to the Lord what my future here on Earth will be like. Wouldn't we all just like to go to sleep, feeling good, and in our "right mind", and wake up in Heaven? But we'll just make the most of the days we feel good, and hope that the little quirks, aches, etc. will subside and we will have a long period of "progression free survival!" We are both "realists" and that makes life more bearable.

      I do believe that God wrote the song, "I beg your pardon, I didn't promise you a rose garden!" And if we keep that in mind, we can sing even when it's raining. There is a saying though not original with me that goes like this:

      "Life isn't about waiting for the storm to pass--it's about learning how to dance in the rain."

      So God wants us to seek His face in the storms of life and on the good days. I feel blessed to have lived so long before I came down with something terminal. And because my "long-distance" vision allows me to see Heaven, I'll just settle for what the Lord allows while I'm still on this earth. Now I'd rather be on a cruise, or some far away vacation but for right now I'll settle for getting all the dust off my furniture here at home. I did see a sign once, I should put it at my door. It said, "You can touch the dust, but PLEASE DON'T WRITE IN IT!" :)

      Okay, am glad you wrote, and if you want to write to me and chat send me a message at: [email redacted].

      I write on the CSN board as Loretta Marshall. Now even though I'm old, I'm still young in my mind. We can always thank God for being in our right mind. As you well know, we stop taking things for granted when we get diagnosed with some illness we can't control. Simple things like a sunrise and a sunset, used to be a given, but now I realize that each day I see another one is another day the Lord has given me.

      Mark Twain wrote, "Wouldn't it be nice if we could be born at age 80 and work our way back to age 18?" I don't want to part with all the wisdom my years have given me, but I would like a younger body--don't we all?

      Okay, Billy and I are going to the store. Seems I'm always doing "one more thing and finally when rush-hour traffic comes", I'm ready to go. Finally, I'll say goodbye for now. Thanks for asking about me. It's good to know that the women Billy is talking to on the web want to know how I'm doing. I don't look over his shoulder, so I never know what he's saying. But he's a "keeper". We've been married for 55 years now and can pretty much read each other's minds. He's one of a kind and I love him. So bye for now.

      May God's peace and blessing rest on you as well,

      Love Loretta

      3 months ago
    • BoiseB's Avatar
      BoiseB

      Hi Loretta, It was so good to here about you. Billy does talk about you? I will keep you in my prayers. Oh dear, I would never want to do the Merlin thing and youthen. Cancer has really been one of the least difficult times in my life. I am stage IV for esophageal cancer my girly cancer is only stage II but it is grade 3 which is very aggressive, but it looks like I will make the five year benchmark. I attribute it to the prayers of many people. I thank God for the eleventh inning. Thank you so much for responding you are as lovely as your picture

      3 months ago