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TracyD

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Posts posted by TracyD

    Dana Farber or Sloan Kettering

    in NSCLC GROUP

    Posted

    Hi Pat,

    I live in the Boston area and am being treated at Massachusetts General Hospital. I could have gone anywhere but after meeting the team of docs there I knew there was no place else I wanted to be treated. The Thoracic Cancer Center at MGH is absolutely outstanding. My surgeon was Dean Donohue, whom I would highly recommend, and I have also heard great things about John Wain. The link is

    http://www.mgh.harvard.edu/cancer/care/ ... /index.asp

    Hope this helps. Good luck.

    Tracy

    New one!

    in SCLC GROUP

    Posted

    Darrell,

    I was just responding to your post when I scrolled down and saw your post about your second opinion ...Yikes!

    I like that second opinion much better than the first and I will be praying that it will be confirmed for you next month.

    Tracy

    not good news

    in MEMBER UPDATES

    Posted

    I hate that word, incurable. I remember when I heard it from my doc, I felt my whole world was crashing down around me, that I was just waiting to die. But then he said that this could be managed, and that we just needed to find a treatment that works, and then hang onto it for as long as possible, and then we find the next one. Who knows, what is incurable today may not be incurable in six months.

    Wouldn't it be great to be cured? You bet. But if I can't be cured I'll settle for living with it for a long, long time.

    I'm with you, I don't want to die, and I'm terrified of suffering. But I know from the stories here that people do survive, and live, with this ugly disease, we can do it too.

    Hang in there. There are options out there, if you don't like the ones you're given then go out and find some more.

    Tracy

    Test Time Again

    in MEMBER UPDATES

    Posted

    Well, I just got back from a wonderful vacation with my family. We spent a week swimming, boating, minigolfing, eating, drinking and best of all...no TV! I only say that because the kids think they were really deprived. Personally, I didn't miss watching the news, it's always so depressing.

    Anyhow, I'm back, and tomorrow is scan day. While we were vacationing I was able to put my worries aside, now they're back. I really don't know what to expect, my breathing has been really great, my I have aches in my ribcage that have always come and gone, but now they seem here to stay. Nothing painful, but now I seem to have a constant reminder that something is not quite right.

    Results are friday. Thank god my brother and his family are visiting from MN this week, it will help get my mind off of things. Til friday ....

    Tracy

    My Guy

    in HOPE

    Posted

    Way to go! You must have have felt all those good vibes I was sending you while I was floating around on my raft in the lake.

    Love you lots.

    Tracy

    Survivors Fears

    in LC SURVIVORS

    Posted

    Wow, where to begin. I was surprised to come across this post just this morning because all of these issues just came to a head for me over the holiday weekend. My husband and I just spent a night without the kids for the first time since my diagnosis three months ago, and instead of a nice romantice evening it turned in to me crying my eyes out over so many of the things I see being written about here.

    First comes the guilt. I feel that my families life is changed forever. We can't go back to those carefree days of thinking that Charlie and I are going to grow old together and watch our children graduate from school, get married, have families of their own. Our children know that we have this "thing" hanging over our heads and nothing at home is the same. What is hard is that we haven't even told them just how bad it is, I know the older ones would be sick with worry. I don't tell them that mommy's tired, or mommy's side hurts, I don't want them to be thinking about my cancer all the time, like I do. All of this is my fault and I feel just so damn guilty.

    I am angry at people for asking how I am but not really wanting to hear the truth. I can see their eyes glazing over as soon as I mention my fear about a new ache or pain, or about the stupid rash I have to deal with on a daily basis. No one wants to hear that I'm afraid of dying, so I just say I'm doing pretty well, thanks. I have friends who think I should somehow just get over it and "deal with it". I think I'm doing really well, but pardon me if I sometimes get down and don't want to be cheered up. Just because I don't want to go to a party doesn't mean I'm running away from life, it means I don't feel up for going to a party.

    When I say that I'm afraid of dying I think that's not quite true. I'm afraid of leaving my family, of missing all of their milestones. I don't want to cause them any pain and I know that if I die it will cause them so much pain and grief I just can't bare it. My 11 year old daughter was upset one night recently when I was putting her to bed. When I asked her why she told me that she is worried that if I die and daddy gets remarried, what happens if she doesn't like her new mom. WOW. I hadn't even gone there yet. No child should have to worry about this, and it's all my fault.

    Today is a new day and I'm feeling better. Most of the time my attitude is great, I do plan on being around for a very long time and I'm enjoying life to the fullest right now. But sometimes the fear gets a hold and it's hard to shake. Oh yeah, I'm angry that it seems that for the rest of my life this is what my family has to deal with. It's so not fair.

    It's good to know there's a place to come to where people will listen to how I'm feeling.

    Thanks for sharing.

    Tracy

    Keith Alan Kubesch my soulmate, my lover, my friend

    in GRIEF

    Posted

    Dear Carleen,

    I am so very sorry, words cannot convey the depth of my sadness. But while words fail me, my prayers do not. I am praying for you and your family, that you may find comfort in the days ahead when it seems that life is just too terrible to bear. I am praying that Keith is at peace, with no more pain, no more treatments, just quiet peace.

    Yours and Keiths love will endure, it will always be in your heart, safe and beautiful.

    Love,

    Tracy

    Liver mets

    in GENERAL

    Posted

    Hi shirley,

    I'm sorry about the difficulties your dad is having with these mets, and the lack of help from your doctors. The only help I can offer is this, I'm being treated at Massachusetts General Hospital and have found them to be absolutely top notch. I would definitely recommend getting another opinion, being in the Boston area you certainly have access to some great health care.

    I also know for a fact that the docs at MGH have heard of HKI-272.

    Best of luck to you.

    Tracy

    Here's What I Did To Fight SCLC

    in SCLC GROUP

    Posted

    Thanks Don!

    I loved all your adivce, especially the parts about giving my body what it needs, food, sleep and exercise. I recently started exercising again even though a little voice inside of me said "why bother", but then a bigger voice said that I must keep my body strong and healthy because "I WILL NOT DIE OF CANCER". I truly believe that God has a plan for me and I am trying to listen very closely so that I will come to know what it is.

    Today I came home from doing errands to discover that the guys who were paving our street knocked over our mailbox with a piece of heavy equipment. At first I was really annoyed and started thinking about who to call to complain, but then I remembered that I was feeling really good today and I decided to just thank God for that and let the rest go.

    Thank you so much for that inspirational story.

    Tracy

    Monday's PET/CT Results

    in MEMBER UPDATES

    Posted

    Antoinette, to have the strength and courage to fight this thing for 11 years, you are truly an inspiration to me. Having just begun this fight I can't imagine the toll it takes after so long, but I certainly hope I'm here 11 years from now to know, maybe then we can sit down and have a drink and talk about it!

    Remember, every DAY you keep up the fight is another day in which someone might just come up with the cure. You hang in there girl.

    Lots of prayers coming your way.

    Tracy

    Diagnosis NSCLC Stage IIIA

    in NSCLC GROUP

    Posted

    Your dad is so right. My doc. told me at the beginning of my journey that first we had to find the right treatment for me, and then I had to hang in there until the next thing came out. Well guess what? Since my diagnosis 2 1/2 mos. ago some of those new things have arrived and are showing some amazing results. So HANG IN THERE!

    You are so fortunate that you can have surgery and perhaps get rid of this disease. You have a great chance of celebrating many more birthdays with your family. It seems you already have a plan, which is a crucial step in turning your attitude around. Now you need to focus that attitude on beating this thing because once you start to believe that you can, you will come out of the fog you have been living in and life will resume again. It will not be the same as it was as you now have worries that are incomprehensible to many people, but it can still be very, very good.

    I won't kid you that my life is just peachy. The cloud that hangs over my family every day never goes away for me, but I realize that I have life, and I plan on living and enjoying it for as long as possible.

    I'll be praying for you.

    Tracy.

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