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Posts posted by JoniRobertWilson

  1. Barbara,

    When Robert was first dx with lung cancer, they said we should "hope"it was SCLC. The dx came back SCLC limited. However after 3 rounds of chemo Robert had a pleural effusion and they did a biopsy and found :cry: What they have told us all along is SC grows fast but will respond quicker to chemo, NSCLC grows slower but responds slower to chemo. We're just now beginning to fight the NSCLC. I'll let you know how we do....we can compare notes.

    Good luck

  2. Hello,

    Your father's case sounds a little like my husbands. We were initially told there was 1 tumor in his right lung. He started chemo for small cell. Then a tumor showed up on his back and he began having a pleural effusion. The surgeon went in with scopes and found a lot more cancer. This cancer did not show up on any x-ray or CT scan. The fluid from his pleural effusion did not show any signs of cancer but the fluid did come from the cancer - doc said that isn't abnormal. Sometimes cancer cells show up, sometimes they don't. The doc said the cancer didn't show up for several reasons - the fluid hid it and it was a thin layer.

    Please obain another opinion if at all possible. I know that takes times, time you don't want to spend right now because it delays the treatment.

    I wish you luck and I wish you peace.

    Whatever you do, don't you ever give up hope. Doctors can be great and intelligent but they aren't GOD. They can't know if all. Fight as long as your father wants to fight and enjoy each and everyday!

  3. Addie,

    Hi! My husband's hair started to fall out on day 19 - he came upstairs and was upset - said my hair is going. He said he needed me to shave it off. I had borrowed a set of clippers from my sister but he didn't know it. I said "hold on honey - I'll go get a set of clippers", he looked up at me and said "are you going to get the dog clippers?". Bless his heart. We chuckle about that now (gotta get some funny somewhere) but at the time it was bad. The thing was, I shaved it off and he looked up and all I could think of was SEXY! I love it. I really love it. I don't care what he looks like as long as he is HERE WITH ME!

    I've had two female friends that have gone through cancer - one breast, one lymphoma and they both lost their hair as well. both went out and bought wigs and I don't think they ever used them - too hot and uncomfortable. They did the "hat thing" and I have to tell you honestly, I thought they too looked beautiful without their hair.

    Let me also say though that I look at myself and think it would be horrible to lose my hair as a woman so I now it must be difficult for you. I hope you enjoy your party tonight and remember, you're a fighter and the hair will grow back!

  4. Hello everyone,

    Well, my husband was admitted to the hospital again on Thursday. He had been out for 9 days for the prior hospitalization for the plueral effussion/chest tube saga...he was admitted for major leg and abdomen swelling but more importantly he was admitted because he was in extreme pain! I think they have finally figured out a good combination of medication to help him through this which is so very important for a good quality of life. We've learned to live with the chest tube and now seems just part of our day. No big deal compared to the pain. Anyway, he's getting started on Iressa, he has had 3 doses and I'm thrilled! I feel like we're back in the fight!! Yeah!

    This morning I was watching a sports clip show about all these remarkable sports moments from hockey to gymnastics and how "moved" everyone was by their abilities, etc, etc and I thought to myself, you need to do a video clip show of my husband! He's showing more courage and talent dealing with this cancer and he's not getting a standing ovation! Not to take away from the talented athletes but let me just tell you this - my hero is sitting in a hospital bed right now and he's not complaining, he's not asking for anything, he's praising God and he's fighting a battle with a nasty beast and I couldn't be prouder. I read each of your stories and I am moved by each of you and your stories. I'm giving you all a standing ovation! Go Team!

  5. Hi,

    My husband had SCLC and he began having some issues mid way through his treatment as well and he had new tumor growth. HIs original tumor in his right lung was shrinking but it appears now he also had NSCLC which grew during the chemo. His tumor appeared in his back and then on the lining of his lung and chest wall.

    Everyone is different so I seriously doubt this is what is happening but it just proves to follow up on those other pains - we were "dismissed" by the doc/nurse when called about other issues and told - he's "being monitored" and relax. Follow through with the pain - it's telling some story.

    Best of luck to you - keep us all posted!

  6. This is the story of Joni and Robert Wilson. I can't call it my story because I'm not the one with cancer. My husband is. We have been married 10 years and have 8 year old son named Alexander.

    In March, my husband returned from a business trip with a "swollen" neck. It was huge! He went to the doctor for a week, almost everyday, because a new, odd symptom would appear. Finally a chest x-ray was ordered and a mass was found in his right lung. I remember that feeling like it was yesterday. I won't every forget it. We were sent to a specialist that day would ordered a CT and a biopsy for the next two days.

    The day of the biopsy, before the procedure, I approached the doctor in the hall and he said he was admitting Robert that day to begin radiation. He was sure the mass was cancer, just not sure what kind. I remember Robert's face when I saw him after the procedure. It's burned into my memory much like that of the first time I saw my son.

    Well, we received a diagnosis of SCLC (limited). We felt like we were lucky. Research shows only 20% of SCLC is caught in this stage.

    Robert went through 28 rounds of radiation and gets through 3 rounds of chemo while working! Awesome. The last round of chemo he had really wiped him out so he decided to take off for a while. Then he began having massive pain in his right shoulder. We finally found out he had a pleural effusion. The second time it was drained they did a biopsy and found not only more cancer but now it's NSCLC. Great, the luck changed. We're now off to MD Anderson (hopefully) for another look at the situation and then we're going to start the fight again.

    I must say, in a strange way, I wasn't so shocked about the cancer diagnosis - I mean - CANCER - that shocked me but I always had a nagging thing in the back of my mind....this is too good to be true isn't it? We are so happily married and have a mutual respect for each other and we both of course adore our son.

    Robert feels he's a burden but you know what? Although I am tired, I am so thankful to God for allowing me this opportunity to serve Robert and show him how much I love him. Robert has taken care of me during a rough pregnancy and is my constant cheerleader. He's never really needed me before now. I'd rather he never needed me, I'd rather we were back to the days of me fussing at him for being late (almost always) and him taking care of the litter boxes. But for whatever reason, this is our journey and we both are up for the fight. We're up for this fight for each other and for Alex. We have Faith in God and support of family and friends like crazy.

    HOw our story will end is up to God. I pray for Robert to be healed and we're putting up a fight and sending up prayers each day.

    I am beyond grateful for each of you and your support as well. I hope you all know, whatever stage of the fight you are in, you give me great inspiration and great hope.

  7. I am sitting here, watching my husband and thinking the same thing! I know how frustrating it is. It seems like we're sitting out part of the fight and I don't like it!

    I guess you could call his oncologist and check with him/her and see what they say. I agree with the past post about the medicine still working in the body but I don't like not "doing" anything.

    We're waiting on a call from MD Anderson to get a 2nd opinion there and so Robert hasn't had chemo for about a month now. He had to go in and have fluid drained and was hospitalized for 1 week and the doc said he wouldn't do chemo for 2 weeks until the had a chance to recuperate.

    I think this is almost worse than going through the side effectsof chemo because we always just thought at least it's working....

    I'm trying to make the most of each day though...

    Good luck to you!

  8. Welcome to the group. Hope you found the inspiration and support you need here like I have. They are a wonderful group of people.

    I wonder if there is something your sister can sign in Seattle that will allow her docs to talk to you. We signed a form like that at my husbands docs to allow me and his sister to discuss his condition with the doctor.

    Does your sister have family there also? I hope so.

    I'm no expert but it seems like that's the way it is with this cancer, it's there and spread before you know it and there aren't any symptoms to speak of with some people. Some people here have "stumpled" onto their cancer.

    As a caregiver to my husband, my heart goes out to you. It must add to the pain, not lessen it, to be so far away and feel helpless.

    Keep calling her and talking to her as much as you/she can. It has to help both of you.

    Good luck and God bless

  9. Thank you all for your replies. It's nice where you can go ask questions without being looked at like an idiot like my husbands doctor looks at me.

    I know someone replied I shouldn't have to ask but I had to. I had to hear it from people who can tell me straight up the truth and understand why I am asking.

    We were dealt a horrible blow this week when the doctors changed his diagnosis/prognosis and I was throwing out lifelines to help save my sanity.

    I am so thankful to you all, thank you for sharing your stories of survival as well as your stories of LIFE and how to hang on to it with all your might.

    I spent the day with my 8 year old son and my husband in the hospital and although it wasn't a Memorial Day like the ones other people were out celebrating, I can't imagine a more precious day.

    Thanks for the PM's, they helped me get to the shower and out the door and I am thankful.

  10. I've been normally posting on the SCLC side but as of Tuesday, I guess I'll post here now. They changed my husbands diagnosis from SC to NSC.

    I'm wondering if anyone out there has had the talc procedure and how long it took for the drainage to stop. Also, was your pleural effusion caused by cancer or infection?

    It feels like we've been kicked in the stomach - you see the SCLC limited sounded a lot better than stage IV NSCLC

    Please let me know too if anyone dx with this had lived past the doc prognosis.

  11. My husband was diagnosed on 3/17/04 with limited stage SCLC. Over three weeks ago, I found a lump in his back. I called the oncology nurse and she said she would have another nurse "check it out". My husband was there that day getting chemo. Never heard back from the nurse. I called later that day and was told - it was "fatty tissue" and that he was being monitored closely and I shouldn't worry about that......ok, during that period my husband had started complaining about massive pain. Last Monday we went for a chest x-ray. The chest x-ray showed that his right lung was collapsed and that he body cavity was full of fluid. No one called us. I called on Wednesday and said I was brinign him up....they called back and had requested the x-rays. Scheduled for him an appt to get the fluid drained. Drained 2 1/2 liters. Ok, they schedule NO follow up so I called the family doc and she scheduled another chest x-ray. Showed fluid again. They said see you on Monday at the oncologist. Nice. Monday they said, this sin't good news. Scheduled us to see a surgeon. He went in on Tuesday and had a 4 liters drained again and the surgeon found more cancer than we had ever thought. They did pathology and are now saying it is showing as NSCLC. Said the SCLC was probably wiped out by chemo. Oh, and the lump on his back which I was basically told to buzz off about turned out to be cancer. The doctor doesn't give us much hope so we're heading to Houston.

    I know from reading a few of you have had change in dx. Please let me know about this - should we have been treating this all the same no matter if it is SC or NSCLC? Seems like it would be different but doc says no.

  12. Amy,

    I'm so sorry to hear about your situation. I know that as we grow older we are suppose to be prepared to deal with dealing with medical issues or losing our parents but I don't think, in any situation it is ever easy and not gut wrenching. I've dealt with similar things with my mom - she has had multiple heart attacks and two by pass surgeries and it rips my insides out. My mom is here with me tonight as we deal with my husbands cancer and she just told me she missed her mom. My mom is 60 something and my grandmother just died two years ago just shy of her 104th birthday.

    Maybe unloading how you are feeling will help - sometimes just purging all those emotions does a body good.

    I wish I could offer up some wonderful advice but what we all have learned on here is that there are good day sand bad days and we need to keep focused on the positive when we can. Don't look to far off into the future, just one day at a time, ok? Be strong. Tomorrow must be better..

  13. My husband is also experiencing severe pain. His is more in his shoulder/arm. We found out last week his pain was caused by 2 1/2 liters of fluid in his body cavity. It showed up on an x-ray - his right lung was collapsed due to the fluid. They drained it but tonight the pain is back and it is severe. HIs pain meds don't touch it.

  14. I'm sitting here, wondering if I have the strength to fight this one more day. My husband (41) is suffering from SCLC. He had to have fluid drained out of his body Thursday ( 2 1/2 liters) and it appears that the fluid has returned again. He is in severe pain tonight. We have an appt with the doctor tomorrow a.m.. He's suppose to have his chemo Mon/Tues/Wed. I just keep thinking, we had this great life before 3/17/04. We didn't think we took anything for granted but trust me we did. Even the little things, like getting to sleep together in the same bed, him taking out the trash and empyting the litter box. We have a great 8 year old son who looks just like me but is just like his dad and he needs him to be well. I would rather me go through this than my husband. I'd take it ten times harder if he just didn't have to go through this. I rarely cry in front of him because he has enough to deal with so I'm unloading on a faceless crowd with hearts of gold, who I know understand. We have a big Faith in God which I know allows me to get up and start each day. This a.m. it was so hard ot even get up because I knew the day would be long and I had so much to do that I didn't even want to start.

    If I just knew everything would turn out all right I know I could see this through but we don't have those guarantees do we? I just want it to be ok.

    I read your postings and you all seem so upbeat...sorry I'm a downer tonight but I feel hopeless and that scares me.

    We get the pathology from the fluid tomorrow. I hope and pray that there is no sign of cancer in the fluid.

    Good night.

  15. Just wanted to check in to see if any of you have experienced this....my husband had been having horrible pain in his right shoulder for at least 1 week. We found out that he had fluid that had collapsed his lung - the fluid was surrounding the lung - not in it. Anyway, they drained 2 1/2 liters off of him yesterday. They x-rayed him again today and found there is still more fluid - the lung looks like it is MAYBE 1/2 full of air but that is being generous. Nurse says wait until Monday when we meet with the doctor. What's up with this? Has anyone experienced this? He is 1/2 way through chemo and completed radiation on 4/23. (The pain in his shoulder went completely away IMMEDIATELY after the fluid was drained.) Thanks.

  16. Great! You guys crack me up!

    Let me tell you this in response to the post...last night, I'm sitting at my son's soccer game (he's 8) and the lady next to me is talking about fitting in all her appoinments into the next day, yada yada...then says her mom-in-law has lung cancer. She says well, you know she kinda brought it on herself, smoking for x amount of years, 3 packs a day....I thought I'd explode seeing how my husband (41) is sitting at home battling this desease. I just said, in a nice voice "that is counter productive to hear for LC patients" and she said something like well she better quit smoking and I said "yes, she probably should but that would be her choice". I wanted to say we ALL have some nasty habits that causes our bodies stress, overeat, drive too fast, drink too much, too much stress, no exercise, etc. Does it really matter why someone we love has LC? I guess in my mind, no, they've got it and we've got to fight and none of us needs that! I'm amazed at the insensivity of others!

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