lisa-ann

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  • lisa-ann
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    Joyce and Missing U,

    I do not want to sound so repetative, however I must thank you both again for your truthfulness, honesty, advice, and true concern for my Dad.

    Mom spoke to Dad this morning about the possibility of Chemo and he did state that he is unsure. He understands that it may give him a little more time, but he also knows it could go the other way. At this point, he has not made a solid decision. I really think that he thought he only had weeks to live and by this Oncologist telling him that he may have 4 months, it gave him a little hope and took some of the pressure off for the time being. I do not think he will have a year, not the way things are progressing, however I still hope for some quality time that is at least pain free.

    He managed to eat a sandwich again today, so the prednisone is doing its job. He is still not complaining of pain, and that is something we have been trying so hard to get the Doctor’s to address. It was great to talk to him today and not see all that pain in his facial expressions.

    He was reading his newspaper as he has always done, and on the front page of the local paper there was an article discussing burials on private property. He showed me the article and said that this is what he wants. It is the first time he had discussed this with me, and I nearly lost it. Mom has discussed it with him, but her never mentioned it to me. This is were reality sets in.

    As for the diagnosis of the primary cancer, I do know that we may never know this, just as you never really know how much time you have left. They are all statistics and educated guesses and each individual is different. I guess I am obseesing a little because we just keep getting the run around, and in all this time they never considered just trying to manage his symptoms until now. Thats what angered me. No one wanted to prescribe anything, until a diagnosis of the primary was made.
    We will wait for the results of this weeks testing and go from there.

    In the meantime, we are staying positive around him and enjoying every minute we have with him. We will support his decisions whatever they may be, and always be here for him.

    I have more to tell you about concerning some of the reactions I am getting from my brothers and sister-in-law concerning the Chemo and my realistic side versus my hopeful side. I will continue this tomorrow. Dad is awake again, so I am going to spend a little time with him again before he goes to bed for the night.

    Many Thanks to Both of You,

    Lisa

    lisa-ann
    Member

    Hi Ginger,

    I am very saddened to hear that your Aunt Babs has passed, especially in such a short time. She never had the chance to put up a fight, or say her goodbye’s. That alone must be very difficult for you to cope with. Sometimes we think that in the end, it is better not knowing our fate, but I think your Aunt Babs would have wanted to tell you how much she loved you and she was robbed of that right. You have certainly dealt with enough grief and losses of your own, to include a precious son and brother. Obvioulsy you are a strong woman, and will get through this also.

    Alway keep your Aunt in your heart and memories, for this is what I believe keeps them alive and lets them go on. I do beleive that we never truly let them go and will always grieve thier loss, it may just get easier as times goes on.
    I am thinking of you today and in the days, weeks, and months ahead. I hope that you have the support of your many loved ones, to help you heal. We are all here for you when you feel the need to talk or vent.

    Much Love and Sympathy,
    Lisa

    lisa-ann
    Member

    To All My Supporting Friends on this Board:

    Well, I feel slightly better today after getting a little sleep. I was actually up very late researching and trying so hard to find answers that I need. I think I only slept about 4 hours and it was not a good sleep.

    I am very confused about all that the Oncologist had to say. Everything is explained so fast, its inpossible to remember everything. I know he said that trying the Chemo could possibly extend his life, and make him more comfortable etc. My questions are as you Joyce noted, How can you treat a cancer of unknown primary? He says based on the fact that the Biopsy concluded that it is non-small cell carcinoma, 90% of these are Primary Lung Cancer. Is he basing that also on the fact that my Dad was a smoker up until about 7 years ago, and he still smokes a pipe? My thoughts are, if lung cancer is the primary, and his liver and lymph nodes are affected, then why are there not any visible tumors in his lungs? His liver is full of tumors and his lymph nodes are very enlarged, so if it is this bad, wouldn’t you think the lungs would be even more involved?

    I guess I now have to wait and see what the Brain MRI and the PetScan show next week. I am just having a really difficult time acceptiing that Lung Cancer is the Primary. Up until he was diagnosed with CC 6 weeks ago, he could still climb ladders, work better than a 20 year old, and be so physically active. Seems to me that he would have had some trouble breathing, coughing, wheezing etc. He has none of those complaints. Only symptoms he had were nausea, weight loss, vomiting bile, stomach pains and sleeping alot more than usual. I surely do not know what to think.
    I spoke to Mom about getting a second opinion on the biopsy, and also requested getting copies of all his records and tests results, so I can pick them apart.

    On a much needed positive note, as of late today, Dad is saying that he is not painful and that the nausea has somewhat eased off. Soooooooo, maybe the Fentanyl Patch, Pred and Compazine are helping. He actually looked better today than I have seen him in awhile. He asked Mom for a tuna sandwich today and ate 1/2 of it, not just jello or water ice. My other concern, is he feeling a little better because he thinks there is some hope? He was now told 4 months and maybe longer with Chemo, and he is no longer thinking 2 weeks? The last thing I want to do is take his hope away, however I do not want him to have false hope.

    It is especially hard for us to now be told after all these weeks that there is some hope when originally there was none. As difficult as it was, we were trying to accept what was happening and preparing for what lies ahead. I do not know that the Chemo is the way to go, but that is his decision and I respect that.

    I am back to researching and researching till I cannot read. I am so tired of thinking and I cannot shut my brain down. I still have so many questions that are not being answered.

    Thanks for listening once again, especially Joyce and Missing U.

    -Lisa

    in reply to: Gemzar, Carboplatin, and Avastin ??? Any Experience??? #17201
    lisa-ann
    Member

    Hi Joyce,

    I explained in more detail under my original thread. Please read…….

    Lisa

    lisa-ann
    Member

    Well here it is, the outcome of today’s appointment with the Oncologist:

    His interpretation of the Liver Biopsy is non-small cell carcinoma (Lung Cancer). This is what he believes to be the Primary, that has metastized to the Liver, Lymph Nodes and Biliary tree. He is unsure of the CC Diagnosis. Dad just had Chest Rads taken a few weeks ago, and his lungs were clear. No difficulty breathing, no coughing, etc.
    My Question of course is why can none of these Doctor’s agree with a diagnosis???

    It has been quite a roller coaster ride for all of us and we still feel lost.
    He is recommending an MRI of the Brain ( Dad complains of dizziness and the feeling of water in his ears that comes and goes ) to rule out Brain Cancer. Secondly, he recommends a PetScan to rule out Bone Cancer ( Dad complains of Abdominal Pain that radiates to his upper back). Lastly, he is recommending Chemo, a combination of Gemzar, Carboplatin and Avastin. He says although this is not a cure, it should make him feel better and give him a better quality of life than he currently has.He suggests giving it a try and to see how well he tolerates it. My concern is his current physical condition. He stated that if this were his Father, he would at least try it and see.

    He did address some of his symptoms today and scripted out Fentanyl 50,mcg/hr to control pain and still use the Oxycodone for breakthrough pain. 10mg Prednisone to help control inflammation possibly causing pain from the liver tumors and too increase his appetite. Compazine to help with Nausea along with the Zofran he is currently taking.

    To our surprise, Dad has elected to give the Chemo a try, so he must have hope and is not ready to give up. Oncologist says if he does nothing at all, he could be looking at 4 months and it will not be of good quality. He also said that the chemo is not a cure, but should make him feel better and extend his life. I do not know what to think or who to believe. Dad is down to 168 lbs (45lbs lost) and is weak. Who am I to take away his hope, it is his decision. I am afraid, worried and scared beyond description at this point in time.

    All of his symptoms are classic symptoms of CC, although he is not jaundiced (very slightly). The abdominal pain, the nausea/vomiting bile, no appetite, marked weight loss, etc. What will they tell us next??? What will they diagnose it as next.
    I will write more later as my brain feels like mush………

    Lisa

    lisa-ann
    Member

    Well the appointment with the Gastroenterologist was a waste of time as far as I am concerned. He told us nothing………
    He states that the CC is not the primary, but gave us no indication of where it may be.
    He was beginning to recommend a Colonoscopy, until Mom told him that he meets with the Oncologist tomorrow, and then said he may not want to do that.
    Nothing indicated the cancer is in his colon, his lungs are clear etc. He did not seem worried about anything and just treated Dad like he was a number. When we asked about the weight loss and inablility to eat (44lbs in 5 weeks), he said to just do the best you can. Dad has had nothing again today except some V8 juice.
    I am soooooooooo MAD and Frustrated right now I could spit bullets. We are just watching him fade. He is so weak, walks hunched over, and is losing his balance.
    He was only awake today for the few hours it took to meet with the Doctor.

    I do not know what we will do tomorrow if this Doctor doesn’t tell us something or do something to help him. Will write tomorrow and let you know how its goes.

    Lisa

    in reply to: Patty is in the Hospital #16954
    lisa-ann
    Member

    Ted and Patty,

    So glad to hear that the surgery went well with no complications. Patty, wishing you a speedy recovery from the surgery. You are both in my thoughts.

    Lisa

    in reply to: Remembering my sister #17174
    lisa-ann
    Member

    Dear TraumaJock,

    So sorry to hear of Sisters untimely passing, so young, too young. I too lost my little sister at the young age of only 26. She was diagnosed with another “rare” cancer called Ewings Sarcoma. No cure/no hope. She was robed of everytihng, and so were we.
    She fought with every last bit of strength she had till in the end we lost her.
    I know how you feel, and it is so precious to know she is a copilot in your heart.

    There are wonderful people on this board who are both knowledgeable and understanding.
    I hope you find the answers and support you are searching for. I am losing my Dad to this disease, and this forum and its caring people have helped me tremendously.

    Much Healing to your Heart,
    Lisa

    lisa-ann
    Member

    Joyce and Missing U,

    I do not know what to say to the both of you, except thank you both for being here with me through this difficult time.
    Your guidence, support and advice are taken to heart, and have truly helped me.
    So very much of what you say, can be applied to my unique relationship with my Dad. I will tell him just how much I Love him, when I beleive the time is right. Mom tells me that he knows that, but I have to tell him again myself.
    He is not a religious man, and I do think he believes that he will just be returned to the earth as it may. I however, have the hope that life does go on past our time here on earth, and that maybe I will be with him again one day.

    For now, I am still taking things one day at a time. I read and re-read your posts, as I do find much comfort in them. I also share them with my Mom, in the hopes they comfort her also. The only positive thing about all this, is it has bought my Mother and I closer than ever, and I am thankful for that alone.

    I will update you both tomorrow after the first of 2 Doctor’s appointments scheduled for this week.

    Always stay as special as you both are. Your Mom and Dad would be soooooo Proud of the both of you.
    Lisa

    lisa-ann
    Member

    Marley,

    I am so sorry to hear about your Aunt Babs. Her diagnosis and advanced disease sound much like my Dad’s. It was also only 5 weeks ago that he was diagnosed with this terrible cancer. I too thought that Pancreatic cancer was the worst you could ever have to deal with until this cancer called CC. I think in my Dad’s case, he had some symptoms going back to April, such as fatigue, stomach pains,nausea, loss of appetite, etc. He never really complained, so who would know. He is not at the stage your dear Aunt Babs is at this time, but not far from it. He has not had to have a stent placed or any other type of drainage, so he still has enough liver and bile duct function.

    I am so sorry that she is suffering, and fading so quickly. I cannot imagine being told that she only has 4-7 days to live, thats not enough time for you and your family to even begin to prepare for what is happening.

    If you read the previous posts on this thread that jmoneypenny and Missing U have written in response to my many posts, I think you will find much needed help in coming to terms with all of this.They have both been there for me since my very first post, and continue to help me through this difficult time in my life. Their personal stories are full of true experiences and sound guidence. I do not know what I would do without them. It is sometimes very difficult to talk to another family member who is so close to the situation at hand, and of course family members who don’t really seem concerned. My Mother and I are dealing with this everyday, and watching this disease take him away piece by piece.

    As they have told me so many times, never give up hope, but prepare for the loss.
    My Mother and I live everyday with my Dad to the fullest, trying to accept what is happening, however, not giving up hope.

    Please keep in touch, we are all here for you and your Aunt.

    Hugs, Lisa

    lisa-ann
    Member

    Hi Joyce,

    I agree that my Dad may know something deep down inside that we are unable to understand. I am trying everyday to accept that I am going to lose him, however, I can’t. As much as I know that there is little hope or treatment options available to him, I still cannot imagine life without him. How can I really prepare myself, when I am having such a difficult time letting go.

    I know everyday when Mom and I try to get him to eat the little that we do, we are not feeding him, we are feeding the cancer. The cancer is taking everything to survive and leaving Dad with nothing, It is also the bodies way of preparing to shut down. I keep hoping that it will turn around some and give us more time with him, yet I do not want him too suffer. The appointment with the oncologist is going to be disappointing, and that I am also preparing for. What can they really do if he is not a canidate for anything. Mom and I talked about Hospice and how we would tell him, so that may really be our only option after this weeks Doctor’s appointments.

    Steve does not talk about it much. I think it hurts him to see me so unhappy and upset, and he just doesn’t know what to say to me. Realistically, I guess there is nothing anyone can say. It is part of life and we all must let go someday. Why can’t I just accept that. Mom talks to me about what his wishes are at the end, there will just be a viewing, and then he will be cremated. It looks as though his remains will be buried here on the property, and Mom says when its her time, she wants to be right there beside him. I somehow find that comforting, that they will be both here for me to watch over, and visit whenever I like. And if my time here is up before Mom’s, I want to be next to him as well.

    I will let you know the outcome of the Doctor’s appointments this week and keep you updated on how he is doing.

    Thanks for Being Here,

    Lisa

    lisa-ann
    Member

    Joyce and Missing U,

    Well we finally got an appointment with the oncologist for this coming Friday afternoon.
    I am hoping that possibly she can help get some of his symptoms under better control.
    As of today, I think Dad looks a little jaundiced, but hard to tell without him seeing me staring at him. He told Mom today, that he only has 2 weeks left to live.

    I got to spend some of his awake time with him today, and it made me feel good.Today was a better day than the last few, although I know he is hiding it from me. He did not vomit today and actually ate some chicken noodle soup. We are running out of things to offer him, he has lost his taste for everything.

    I am studying all the lines on his face, his hair, his smile and laugh, his smell, etc. As much as I know that I am going to lose him, I am still somewhat living in denial, for thats what gets me to the next day.

    I thank the both of you for helping me deal with everything that is going on, it really is great to know that I can share my feelings with someone other than my Mom. I hate to burden her with my sadness, when she has so much of her own. We both Love him dearly, but in different ways. A wife’s love is different than a Daughters love, but we both love him unconditionally.

    Mom and I were laughing on Saturday talking about some of the traits I have acquired from him. I have his hands, only smaller. I have his chin, only smaller. I have his spending habits. I have his love for animals. I sooooo have his bull headed ways, and alot of his strength. I will always have those, and nothing will ever change that.

    I can only hope for a good day tomorrow, as that is what keeps me going. I do treasure every minute that I have with him, I love him so much.

    Thanks for being here,
    Lisa

    lisa-ann
    Member

    Missing U,

    Again, I need to thank you for sharing your story with me.I know how painful it must be to re-live the last months of your Dad’s life. It is comforting to me, because your story does sound much like mine, so therfore I know we are not alone.

    Dad is not doing well at all. Every little bit of food he gets in is now coming back to haunt him. On top of all this, he is now having a bout with his gout, which is very very painful. It has attacked his ankle, so now he can only walk from the bedroom to the living room with a walker. He is absolutley miserable. Today alone he has vomited 4 times, and all he took in was a jello. He keeps saying that he cannot even look at food anymore, it makes him sick. He has slept most of today with the exception of only a few hours.

    Mom and I feel so helpless because there is nothing we can do. It is a waiting game with the Doctor’s. He does not have his next appointment with the gastroenterologist until late Thursday. I am affraid it is all taking to long, waiting for the next step and he just keeps slipping away day by day.How much more is he expected to take.
    He is not jaundiced and his abdomen is normal size. I am concerned about what is going on that we don’t know about. He doesn’t want to take his meds anymore because he says they are not doing anything. Mom trys and trys, but he gets angry.
    We have run out of ideas as to what to offer him, and I know he is not taking in enough fluids either. How long could this possibly go on and how far advanced is the disease already, is the question we keep asking ourselves.

    I will keep you updated as much as I can.

    Stay Special,
    Lisa

    lisa-ann
    Member

    Dad’s Liver Biopsy results came back yesterday, although we are told they are still waiting on some tests. It is now confirmed that it is CC with total liver involvement.
    The last couple days have been very depressing here for both Mom and I. We are watching this disease take more life out of Dad everyday. Mom is losing a husband and I my Father.

    He is weakening before our eyes, losing more weight, and has lost his appetite for just about everything. Things that he always drank and ate, no longer appeal to him.Most days his daily intake consists of jello, water ice, and maybe some applesauce. He seems to be vomiting more frequently, and sleeping much more. We are so worried, how long can he continue to live like this. Is it a normal part of this disease to lose taste for everything that was once an everday thing, like hot coffee, toast, etc.?

    He is scheduled to meet with the gastroenterologist this Thursday,I suppose to discuss the biopsy results. Mom got the resuts from his Primary Physician. It was also recommended by him to meet with an Oncologist to try and at least combat the symptoms. He continues to complain of pain, and just says he feels yucky.

    Still have so many questions about the progression of this disease, and Mom and I are so very frustrated.

    Lisa

    lisa-ann
    Member

    Missing U,

    I am writing to you now, with tears streaming down my face. Your Dad sounds just like mine. He and my Mom were also here through the building of the house we now call home and my Dad and husband built the barn. I used to think that I would always have a piece of his work here with me forever and I will. I never once imagined that it would be this soon. There is too much I still want to do with him and so much I need to say to him, that I am lost and do not no were to start.

    I will continue writing to you later this evening, when I collect myself and my thoughts.

    Lisa

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