My family says I am addicted . .

Wpturner05
Wpturner05 Member Posts: 114
edited September 2011 in Esophageal Cancer #1
Good morning to all my new, stranger friends whom I feel closer than my best friend,

Since my husband's diagnosis on 11/01/2010, I have felt horrifically alone. As though nobody could possible imagine whay my world was like. What my day to day has looked like, how I get through each day and how we continue to function given the ugly disease of EC always and forever lurking in the background. Initially when my husband was diagnosed, he was getting induction chemo, followed by chemo and 28days of radiation and then proposed surgery. We had been told over and over again by Kevin's local oncologist and his oncologist at Memorial Sloan Kettering that the plan in place was a solid plan that would result in a cure - yes, cure. We hung our hat on that. We even chose to leave our children for the 28 days of radiation and stay at Hope Lodge in NYC so that he could have one of the most respected radiation teams at Memorial Sloan Kettering do his specific radiation - IMRT with respitory gating - you know . . . to protect all of his vital organs from the radiation so that 10-20 years down the road he would have minimal radiation side effects . . .Damn it - no surgery and liver mets by the end of March.

He has continued to receive multiple cocktails of chemo in an effort to achieve remission - no remission yet. He did have the SIR-spheres the beginning of August - hopefully that will control the liver mets for a while. (We find out if it was successful on 9/8)

I guess this long winded message is just to say thank you - I have been searching for someone, anyone that gets what it is like to live in the 4 walls of our home. What it is like to be pissed that when I said 'I do' and 'all the days of my life' I wanted my husband until all the days of MY LIFE!!!!!!!!!!!!!!!!!!!!!!!! not for a few. My 7 year old and 11 year old deserve their dad and I am pissed. We have to continue 'normal' life for our children yet at the same time manage all the things that pop up with EC - appointments, chemo, side effects etc.

Here, on this board, I have found what I have needed. People that GET IT! You almost live in my four walls. You are often times where I am everyday or close to it. I check this site probably 5-10 times per day - hence my family says I am addicted :) I could chose a lot of others things to be addicted to . . . .

Thank You all for understanding - for being there when you don't even realize you are there for me. My hope is that I will be able to offer to some of you even a glimpse of understanding as I travel this road and post on this site.

Whitney

Comments

  • chemosmoker
    chemosmoker Member Posts: 501
    #2
    More than you know...
    Whitney,

    "My hope is that I will be able to offer to some of you even a glimpse of understanding as I travel this road and post on this site."

    You just DID. And you do with every post.

    WE understand, I get it. We get it.
    Screaming and crying don't fix it, but they seem to be part of the course none the less.
    I know EXACTLY how you feel.

    Praying for calm and reason. Counting on nothing.
    One hell of a learning curve with this beast.
    Glad you posted that!

    With love and understanding that others cannot know,

    -Eric
  • Daisylin
    Daisylin Member Posts: 365
    #3
    chemosmoker said:

    More than you know...
    Whitney,

    "My hope is that I will be able to offer to some of you even a glimpse of understanding as I travel this road and post on this site."

    You just DID. And you do with every post.

    WE understand, I get it. We get it.
    Screaming and crying don't fix it, but they seem to be part of the course none the less.
    I know EXACTLY how you feel.

    Praying for calm and reason. Counting on nothing.
    One hell of a learning curve with this beast.
    Glad you posted that!

    With love and understanding that others cannot know,

    -Eric

    I get it
    Whitney, you are so right, we all totally get it. We know your heart ache, your fear, your exhaustion, your sorrow, your pain, your suffering and most of all, we know what it feels like in your 'walls of your house'.

    I do now know, however how truly awful it must be to be raising children while facing this beast. I could not even imagine. I have thanked God many times that I am not trying to juggle the schedules and demands of youngsters while facing appointments, chemo, side effects and sorrow. Some days I can barely manage to make a trip to the grocery store, or pay the bills or even have a quiet moment where I can think about something other than cancer.

    What I do know is that you are a very strong and brave woman, you should be so very proud of yourself. We all know what it's like to be amazed at ourselves for how much we can take. I never could have imagined myself in this role. People always congratulate me on how strong I am, but all I can think is that.... what choice do I have? I love my husband more than anything, and I will devote the rest of his life to making sure he has everything he needs to be comfortable and as happy as possible. Some days it seems there's nothing I can do, as each day seems to bring more and more sadness into our house. It's often hard to be happy when there's not much to look forward to...

    Please be well, thinking of you,
    Chantal
  • BMGky
    BMGky Member Posts: 621
    #4
    This IS a wonderful site.
    This IS a wonderful site. It is so sad that one has to find it because it means that you or someone you care for is dealing with EC; yet, each one of us is so glad to find fellow travelers.

    Your post is very powerful, and I can identify with your "addiction." We all are, at least a little, addicted to this site because it is so helpful.

    I became confused as I read your post. What happened to the surgery? He was on that path. He was diagnosed in November of 2010. Usually surgery follows the chemo and radiation completion in 4 to 6 weeks. What was his initial staging? Did the post treatment PET scan show the mets? It isn't really any of my business. It just is so sad to hear of his being offered surgery and possible "cure," only to be now ineligible for the surgery.

    Even though my husband has completed his surgery and post-op recovery, I still come to this site. Hopefully, I can offer encouragement and understanding to those in this battle. The support of the fine members of this discussion group helped me deal with all the strains and problems this diagnosis brings. Their prayers and suggestions strengthened me. Mary
  • Wpturner05
    Wpturner05 Member Posts: 114
    #5
    BMGky said:

    This IS a wonderful site.
    This IS a wonderful site. It is so sad that one has to find it because it means that you or someone you care for is dealing with EC; yet, each one of us is so glad to find fellow travelers.

    Your post is very powerful, and I can identify with your "addiction." We all are, at least a little, addicted to this site because it is so helpful.

    I became confused as I read your post. What happened to the surgery? He was on that path. He was diagnosed in November of 2010. Usually surgery follows the chemo and radiation completion in 4 to 6 weeks. What was his initial staging? Did the post treatment PET scan show the mets? It isn't really any of my business. It just is so sad to hear of his being offered surgery and possible "cure," only to be now ineligible for the surgery.

    Even though my husband has completed his surgery and post-op recovery, I still come to this site. Hopefully, I can offer encouragement and understanding to those in this battle. The support of the fine members of this discussion group helped me deal with all the strains and problems this diagnosis brings. Their prayers and suggestions strengthened me. Mary

    derailed plans
    The post treatment scan showed the mets - we found out when we were sitting in the waiting room about to have his pre-surgial endoscopy. His local oncologist called Kevin on his cell. Memorial Sloan Kettering cancelled the scope and surgery in about 30 minutes flat - telling us there was no reason to do the scope when he would not have the surgery. (This was after we travelled from our home to NYC Memorial Sloan Kettering for the scope and my husband had been NPO all day) We had to wait 5 days to see the oncologist at Sloan - it was a really rough time. BTW - I hate cancer!!
  • jax568
    jax568 Member Posts: 57
    #6
    Wpturner05 said:

    derailed plans
    The post treatment scan showed the mets - we found out when we were sitting in the waiting room about to have his pre-surgial endoscopy. His local oncologist called Kevin on his cell. Memorial Sloan Kettering cancelled the scope and surgery in about 30 minutes flat - telling us there was no reason to do the scope when he would not have the surgery. (This was after we travelled from our home to NYC Memorial Sloan Kettering for the scope and my husband had been NPO all day) We had to wait 5 days to see the oncologist at Sloan - it was a really rough time. BTW - I hate cancer!!

    BTW - I hate cancer too!!!
    This is so hard. I am so sorry the way things have not gone according to what you hoped for.

    The unknown is so damn scary and knowing that at some point my husband may die way too early just hurts my whole mind and body. My 11 year old is at the point where we don't get along and she is always looking for her dad. Will my 8 year old remember all the good times.

    Our family was formed through adoption. Our two girls are from China. I myself had uterine cancer. It was small non aggressive and removed, I never even had chemo. I do need to be checked every 6 months due to, of course my cancer is rare and they don't know much about it. What they do know is that is does like to come back. GREAT!

    The girls are the hardest part for me. I worry for them. I worry they won't be OK, their lives turning out different because of not having their father. I hurt for my husband knowing he probably won't see them grow, and I don't want him to suffer. Myself I don't worry, I know I will be OK, as long as I stay healthy, again in mind and body.

    Then I think it's 2011 and I will probably live in fear for years, as my husband is young and strong and probably won't go that easy. It just sucks anyway you look at it.

    Sorry for the rambling as I don't even remember what I was replying to.
    Jackie
  • ritawaite13
    ritawaite13 Member Posts: 236
    #7
    Addicted
    Hi Whitney,
    I am so sorry for all you're going through. I haven't been a frequent visit to this site because I've been too busy being a caregiver to my husband. He has stage 4 EC (diagnosed on 7/11)and also suffered a massive stroke on July 20.
    I totally feel your pain. This awful disease is just too much. It drains all of our physical and mental energy and it just takes everything I've got to put one foot in front of the other some days. I don't know how you can possibly take care of children too. I hope you have good friends and family nearby to help you out.
    We have set up a caringbridge site and I think I'm addicted to that. In just short of 2 months we've had almost 10,000 visits to the site and I try to post updates every day and look for encouraging words from loved ones. That has been a Godsend for me as far as the communication piece of this goes. I have 2 adult children who are helpful and friends and family nearby too so I am lucky. There's also a site called Lotsa Helping Hands where you can use a calendar to post what you need help with ie meals, transportation, companionship or whatever. Friends can sign up whenever they're available to help you. I will be checking back here and just wish you all the best.
    Rita

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