Newly diagnosed

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debrawylie
debrawylie Member Posts: 12
in Ovarian Cancer #1
Dear friends, my mom went for a cat scan on January 31st after severe bloating. Cat scan revealed mass and two anortic anurisms. Biopsy revealed stage iv OC. Less than one week from learning all of this, my mom started strong chemo. She is unable to undergo surgery to relieve the pain because of the anurisms so we are slowly hoping for pain relief thru chemo. However, now on top of the pain, she is having blisters in her mouth, rash on her legs, swelling of her feet and legs and extreme tiredness. She's on pain med and pain patch. She has teeth that have become lose and will have to be extracted once bloodwork results are in day after tomorrow to confirm whether her white blood cell count will alow the extraction to take place. Her treatments are once every 3 weeks for 8 weeks or 24 weeks minimum. My mom said from the beginning that she understands her diagnosis and that she only asks for quality of life over quantity. She had to begin the treatments to relieve some of the pain caused by the mass in her abdomen; however, she has stated adamantly once the pain subsides, she wants to strongly consider whether to continue the treatments. This has been such a shock for all of us. My mom and I are extremely close but she is one state and me in another. I spent 2 weeks with her but I have had to return home to handle things here for awhile before I return to her again. I am handling all aspects of my mom's life so that she can just focus on her health. She is not married but I have a sister who was temporarily living with her when this was discovered. My sister and I are as different as night and day. To add insult to injury, my sister has an addiction problem so I have to arrange other driving/transporting arrangements for my mother. I had a mother like figure die of this same disease about 9 years ago. Her only symptom prior was extreme bloating just like my mom. I am trying very hard to stay positive but it is very difficult. I don't like to see my mom in so much pain with new problems occurring almost daily. Plus losing her hair is around the corner and that will be a huge hurdle for my mom as is with most women I would expect. I pray someone can give me direction in handling this horrible disease. I don't mean to be negative. All of this has happened so fast to such a beautiful person and soul. It breaks my heart.

Comments

  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #2
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    I hope your Mom can find some peace
    and I hope her pain can be better managed. If she is on Carboplantin and Taxol..they tend to make you very tired and bone and joint pain as well. Maybe her ca-125 will come down. I know it is hard on family members who live far away. Do what you can ans I am sure your Mom will be grateful. Don not let her lose hope...val
  • karen1951
    karen1951 Member Posts: 103
    #3
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    it's so hard watching your
    it's so hard watching your mom going thru all of this. i hope that the chemo will kick in soon and alleviate some of her symptoms. when that happens and the pain is under control the desire to fight and live will hopefully kick in. it's hard to be positive when you are enduring everything your mom is . we all reach a point at some time throughout our ordeals where it would be so much easier to give up than to put up with the pain. i know i did..but once the disease is under control and your mom sees that there is quality of life she will start to feel like life is worth living again....you wait and see. prayers to your family...karen
  • Gottalovelife
    Gottalovelife Member Posts: 45
    #4
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    Have hope
    It is hard I'm sure to watch your Mom go through this but don't let her give up, chemo is not easy, it makes you tired,weak and nauseated, but you learn to fight and get through. There are a lot of women with stage IV that survive for years. So hopefully once your Mom gets the pain under control she will see that life is worth fighting for. Stay strong and I can tell how much you love your Mom, praying for you and you will find a lot of support from the wonderful women on this board.
  • whiterose
    whiterose Member Posts: 89
    #5
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    Stay positive. At the
    Stay positive. At the beginning is the worst, it seems too much to bear. I couldn't keep everything straight, doctor's appointments, pill schedules, chemo, injections, etc. It was overwhelming. I was ready to give up. But, eventually, things even out and you adjust. Plus you're still in shock at the diagnosis. Give it a little time and try to adjust. It can get better, believe me.....
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #6
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    all the suport you need
    is righ here, the other night one of the dogs pooped up stairs and my mom went off. she was yelling at me for both dogs and mine was going to be sent back to the pound, if I am not happy here I can move, and other things. After the fight was over which was about a few hours of us not talking she said how sorry she was. I realized at that point what stress she was under it is hard to stay strong when you are watching your loved one go through all of this. Come here to sound off, to find hope, and to recive care. We will lift you up as you help your mom because we understand. I will pray for you and your mom it is hard when it feels like you are just thrown into this battle. I went to the ER thinking it was just a infection in my lungs and I just needed real strong medication to kick it and found out it was cancer. Before I had time to proccess the word cancer I had my lungs drained four times, had sugery, and started chemo all under one month. I felt like the weight of the world was placed on my shoulders and was not allowed to process it so I understand. Try to be as possitive as you can and keep your moms hope up as best you can she is going to have to face a lot of things and it will help to have you to lean on.

    Anne
  • mopar
    mopar Member Posts: 1,972 Member
    #7
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    YOU ARE UNDER AN UNBELIEVABLE AMOUNT OF STRESS!
    As everyone has said, it is so difficult to see someone you love go through this. And to have this situation with your sister must complicate it all the more. Your dear mother is so lucky to have you. Give yourself some time to breathe and think things through. We are here for you, any time. Remember, there's also a chat line here that you can participate in. I can remember many a sleepless night that I would join in and chat. It brought a great deal of comfort, and passed away those long, sleepless hours. No matter what we chatted about, it relieved my stress and anxiety and helped to relax me.

    I will be praying for your dear mother. And I will be praying for you and your sister as well. Being positive doesn't mean you're denying the facts. It just means that you're taking one moment at a time, not looking ahead to what may or may not be. Living in the moment takes out the anxiety factor.

    Sending lots of hugs and prayers to you. Please keep in touch.

    Monika
  • debrawylie
    debrawylie Member Posts: 12
    #8
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    mopar said:

    YOU ARE UNDER AN UNBELIEVABLE AMOUNT OF STRESS!
    As everyone has said, it is so difficult to see someone you love go through this. And to have this situation with your sister must complicate it all the more. Your dear mother is so lucky to have you. Give yourself some time to breathe and think things through. We are here for you, any time. Remember, there's also a chat line here that you can participate in. I can remember many a sleepless night that I would join in and chat. It brought a great deal of comfort, and passed away those long, sleepless hours. No matter what we chatted about, it relieved my stress and anxiety and helped to relax me.

    I will be praying for your dear mother. And I will be praying for you and your sister as well. Being positive doesn't mean you're denying the facts. It just means that you're taking one moment at a time, not looking ahead to what may or may not be. Living in the moment takes out the anxiety factor.

    Sending lots of hugs and prayers to you. Please keep in touch.

    Monika

    newly diagnosed
    thank you for your sweet note. Today was a much better day. I spoke to my mom over the phone and her voice sounded much stronger. I don't mean to sound selfish like I'm pounding my fist asking why us . . . it's just so difficult to absorb. My mom and I are so close . . . miles have never been a problem for us because in our hearts we are close no matter what. I know I will become more positive as all of this becomes more routine and real . . . I just cannot imagine this world without my mom. I guess I must stop thinking that way and help her survive each day that she is here with me. You are right, some days we take time one hour at a time and build back up to one day at a time. I will be thankful for each moment I have with her and make her time on this earth as pleasant and comfortable as a daughter possibly can.

    Thank you again.
  • debrawylie
    debrawylie Member Posts: 12
    #9
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    AnneBehymer said:

    all the suport you need
    is righ here, the other night one of the dogs pooped up stairs and my mom went off. she was yelling at me for both dogs and mine was going to be sent back to the pound, if I am not happy here I can move, and other things. After the fight was over which was about a few hours of us not talking she said how sorry she was. I realized at that point what stress she was under it is hard to stay strong when you are watching your loved one go through all of this. Come here to sound off, to find hope, and to recive care. We will lift you up as you help your mom because we understand. I will pray for you and your mom it is hard when it feels like you are just thrown into this battle. I went to the ER thinking it was just a infection in my lungs and I just needed real strong medication to kick it and found out it was cancer. Before I had time to proccess the word cancer I had my lungs drained four times, had sugery, and started chemo all under one month. I felt like the weight of the world was placed on my shoulders and was not allowed to process it so I understand. Try to be as possitive as you can and keep your moms hope up as best you can she is going to have to face a lot of things and it will help to have you to lean on.

    Anne

    newly diagnosed
    I am sorry for your diagnosis. I think you are so right when you said how you were thrown into this world of cancer. Everything went so fast. It really hit again when I was standing at the pharmacy, without my sweet mother who was home processing everything and resting, picking up bottle after bottle of prescription meds. The pharmacist talking but all I could really hear was the doctor talking about chemotherapy and my mother's treatment plan. I'm the oldest of two daughters and my sister really can only do what she can do. My mom's world has been turned over to me and she trusts me so much. I have to admit, at first, I felt so very overwhelmed. I knew I would have to return to my home out of state at some point but how could I leave my mom with all of these meds blah blah blah. But I took it day by day. Bought pill organizers. Notebook. Calendar. and slowly things started coming together and I felt confident enough to leave for awhile. I hope you keep your faith as well. Some days are very overwhelming. Today I sat down for a minute and ended up falling asleep. No doubt because last night I tossed and turned all night. Everytime I would awake, I would think of my mother. I miss falling asleep holding her sweet hand. And getting up with her during the night when she would get up because of the pain. I know we have to stay strong. Thank you for your support:o)
  • debrawylie
    debrawylie Member Posts: 12
    #10
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    AnneBehymer said:

    all the suport you need
    is righ here, the other night one of the dogs pooped up stairs and my mom went off. she was yelling at me for both dogs and mine was going to be sent back to the pound, if I am not happy here I can move, and other things. After the fight was over which was about a few hours of us not talking she said how sorry she was. I realized at that point what stress she was under it is hard to stay strong when you are watching your loved one go through all of this. Come here to sound off, to find hope, and to recive care. We will lift you up as you help your mom because we understand. I will pray for you and your mom it is hard when it feels like you are just thrown into this battle. I went to the ER thinking it was just a infection in my lungs and I just needed real strong medication to kick it and found out it was cancer. Before I had time to proccess the word cancer I had my lungs drained four times, had sugery, and started chemo all under one month. I felt like the weight of the world was placed on my shoulders and was not allowed to process it so I understand. Try to be as possitive as you can and keep your moms hope up as best you can she is going to have to face a lot of things and it will help to have you to lean on.

    Anne

    newly diagnosed
    I am sorry for your diagnosis. I think you are so right when you said how you were thrown into this world of cancer. Everything went so fast. It really hit again when I was standing at the pharmacy, without my sweet mother who was home processing everything and resting, picking up bottle after bottle of prescription meds. The pharmacist talking but all I could really hear was the doctor talking about chemotherapy and my mother's treatment plan. I'm the oldest of two daughters and my sister really can only do what she can do. My mom's world has been turned over to me and she trusts me so much. I have to admit, at first, I felt so very overwhelmed. I knew I would have to return to my home out of state at some point but how could I leave my mom with all of these meds blah blah blah. But I took it day by day. Bought pill organizers. Notebook. Calendar. and slowly things started coming together and I felt confident enough to leave for awhile. I hope you keep your faith as well. Some days are very overwhelming. Today I sat down for a minute and ended up falling asleep. No doubt because last night I tossed and turned all night. Everytime I would awake, I would think of my mother. I miss falling asleep holding her sweet hand. And getting up with her during the night when she would get up because of the pain. I know we have to stay strong. Thank you for your support:o)
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #11
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    debrawylie said:

    newly diagnosed
    thank you for your sweet note. Today was a much better day. I spoke to my mom over the phone and her voice sounded much stronger. I don't mean to sound selfish like I'm pounding my fist asking why us . . . it's just so difficult to absorb. My mom and I are so close . . . miles have never been a problem for us because in our hearts we are close no matter what. I know I will become more positive as all of this becomes more routine and real . . . I just cannot imagine this world without my mom. I guess I must stop thinking that way and help her survive each day that she is here with me. You are right, some days we take time one hour at a time and build back up to one day at a time. I will be thankful for each moment I have with her and make her time on this earth as pleasant and comfortable as a daughter possibly can.

    Thank you again.

    Dear friend
    I'm so glad you found this board to get support from these lovely and brave women and to share your anxieties and fears about your beloved mom. I'm praying with all of my heart that the chemo helps your mom and praying for you and your sister too as you all go through this ordeal.

    Hugs and prayers,

    Kelly
  • Mwee
    Mwee Member Posts: 1,338
    #12
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    You've come to the right place
    I'm so sorry for you're family's troubles. I agree that the beginning is the toughest part. It takes a few weeks to begin to get some of the symptoms under control. You should be able to get a lot of support from your Mom's ONC office. Please don't be shy to notify them of any all changes that are occurring. We've all been where you are... either diagnosed ourselves or dealing with our loved ones and we're here to help in any way we can. Chemo is not fun, but it is doable. The results can be amazing and offer lots of quality of life. Losing your hair can be tougher on some that others. Many of the warriors here on this board have made a party when it came time to shave their locks.

    You've come to the right place! We'll be here every step of the way. No feelings or questions are taboo. Let us know when and what chemo your Mom will be taking and we can help you prepare.
    You and your family are not alone. (((HUGS))) Maria
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #13
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    debrawylie said:

    newly diagnosed
    I am sorry for your diagnosis. I think you are so right when you said how you were thrown into this world of cancer. Everything went so fast. It really hit again when I was standing at the pharmacy, without my sweet mother who was home processing everything and resting, picking up bottle after bottle of prescription meds. The pharmacist talking but all I could really hear was the doctor talking about chemotherapy and my mother's treatment plan. I'm the oldest of two daughters and my sister really can only do what she can do. My mom's world has been turned over to me and she trusts me so much. I have to admit, at first, I felt so very overwhelmed. I knew I would have to return to my home out of state at some point but how could I leave my mom with all of these meds blah blah blah. But I took it day by day. Bought pill organizers. Notebook. Calendar. and slowly things started coming together and I felt confident enough to leave for awhile. I hope you keep your faith as well. Some days are very overwhelming. Today I sat down for a minute and ended up falling asleep. No doubt because last night I tossed and turned all night. Everytime I would awake, I would think of my mother. I miss falling asleep holding her sweet hand. And getting up with her during the night when she would get up because of the pain. I know we have to stay strong. Thank you for your support:o)

    staying strong
    You need to stay strong but also attend to your needs. Make sure you are getting the rest you need or you will not be any good to your mom. I am finding out that this is a hard road for everyone not just the one with cancer, The explosion that happen between my mom and I was do to the fact that my mom was not taking time for herself it was all about me. I did try to tell her she needed to go out with her friends for dinner or something because I could see her getting overwelmed but she said she was fine. I tried to do things for myself when I could but sometimes that is hard. Please allow yourself some time to process also it's about both of you, the pain she is dealing with and the pain your are dealing with. You are in my prays and I hope the best for your mom.

    Anne
  • debrawylie
    debrawylie Member Posts: 12
    #14
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    Mwee said:

    You've come to the right place
    I'm so sorry for you're family's troubles. I agree that the beginning is the toughest part. It takes a few weeks to begin to get some of the symptoms under control. You should be able to get a lot of support from your Mom's ONC office. Please don't be shy to notify them of any all changes that are occurring. We've all been where you are... either diagnosed ourselves or dealing with our loved ones and we're here to help in any way we can. Chemo is not fun, but it is doable. The results can be amazing and offer lots of quality of life. Losing your hair can be tougher on some that others. Many of the warriors here on this board have made a party when it came time to shave their locks.

    You've come to the right place! We'll be here every step of the way. No feelings or questions are taboo. Let us know when and what chemo your Mom will be taking and we can help you prepare.
    You and your family are not alone. (((HUGS))) Maria

    newly diagnosed
    Thank you for your comment. As we speak, my mom has been admitted to the hospital b/c she's wheezing and swelling is worse in one leg than the other. The doctor wants tests done to rule out blood clot in her lungs. They are also eliminating the fluid tomorrow morning for the third time. My mom laid in the ER for 5 hours today b/c doctor wanted to admit her thru there to faster facilitate the test results. I am still out of state on standby as the RN for her doctor told me this could all just be result of cancer and if that's the case, they will treat her and send her home. If it ends up being a blood clot, then that's another issue altogether. So I'm on standby waiting to hear which it is. I was already making plans to fly back to her when she starts second chemo on March 5th so it's all a waiting game. God knows I wish I lived closer to my mom so it's not such a burden to be with her and away from my responsibilities. My mom and I have an agreement though if she is ever at her lowest and just wants me there, she just has to say the word. This is so difficult . . . we are so close. Watching her go thru this is hard. I just don't want her being put thru constant pain and agony if there are not going to be good days. Because of her two aortic anurisms, she is put in a different boat that most as she is unable to do surgery or even be nauseous b/c it could kill her instantly. My mom is a young 64 years old. Hasn't even been able to enjoy a day of retirement . . . finally filed her retirement app with Social Security one week ago after learning of her disease and anurisms . . . life can be so unfair to some of the most wonderful angels among us.
  • dettychipr739
    dettychipr739 Member Posts: 3
    #15
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    poopergirl14052 said:

    I hope your Mom can find some peace
    and I hope her pain can be better managed. If she is on Carboplantin and Taxol..they tend to make you very tired and bone and joint pain as well. Maybe her ca-125 will come down. I know it is hard on family members who live far away. Do what you can ans I am sure your Mom will be grateful. Don not let her lose hope...val

    I think so. Don't let her
    I think so. Don't let her lose hope. Hope is the best pill. - avocado calories
  • whiterose
    whiterose Member Posts: 89
    #16
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    debrawylie said:

    newly diagnosed
    Thank you for your comment. As we speak, my mom has been admitted to the hospital b/c she's wheezing and swelling is worse in one leg than the other. The doctor wants tests done to rule out blood clot in her lungs. They are also eliminating the fluid tomorrow morning for the third time. My mom laid in the ER for 5 hours today b/c doctor wanted to admit her thru there to faster facilitate the test results. I am still out of state on standby as the RN for her doctor told me this could all just be result of cancer and if that's the case, they will treat her and send her home. If it ends up being a blood clot, then that's another issue altogether. So I'm on standby waiting to hear which it is. I was already making plans to fly back to her when she starts second chemo on March 5th so it's all a waiting game. God knows I wish I lived closer to my mom so it's not such a burden to be with her and away from my responsibilities. My mom and I have an agreement though if she is ever at her lowest and just wants me there, she just has to say the word. This is so difficult . . . we are so close. Watching her go thru this is hard. I just don't want her being put thru constant pain and agony if there are not going to be good days. Because of her two aortic anurisms, she is put in a different boat that most as she is unable to do surgery or even be nauseous b/c it could kill her instantly. My mom is a young 64 years old. Hasn't even been able to enjoy a day of retirement . . . finally filed her retirement app with Social Security one week ago after learning of her disease and anurisms . . . life can be so unfair to some of the most wonderful angels among us.

    Hi Debra
    Yes, life can certainly be unfair. I wanted to drop you a quick note to tell you that I also had this swelling (ascites) and had a blood clot (although in my leg). They put me on Lovenox which eventually cleared up the blood clot, and when they started the chemo, that dealt with the ascites. There are answers and solutions, it's just when the problems all pile up at the same time that you think it's totally unmanageable. The problems get sorted and dealt with, and then it doesn't seem so overwhelming. Take care of yourself, it will be difficult to deal with this if you're tired and stressed out. Good luck and keep us posted.....
  • debrawylie
    debrawylie Member Posts: 12
    #17
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    whiterose said:

    Hi Debra
    Yes, life can certainly be unfair. I wanted to drop you a quick note to tell you that I also had this swelling (ascites) and had a blood clot (although in my leg). They put me on Lovenox which eventually cleared up the blood clot, and when they started the chemo, that dealt with the ascites. There are answers and solutions, it's just when the problems all pile up at the same time that you think it's totally unmanageable. The problems get sorted and dealt with, and then it doesn't seem so overwhelming. Take care of yourself, it will be difficult to deal with this if you're tired and stressed out. Good luck and keep us posted.....

    newly diagnosed update
    My mom is still in the hospital. She has had many tests done to detect and confirm there are no blood clots. She is now set to endure a blood transfusion today. The fluid around her abdoment will be drained after the transfusion at some point. Her legs will like wise be wrapped to help with the fluid retention once everything else is completed. My mom's restrctions because of her two anurisms makes everything a little more complicated. She is not like most patients who start this game with a heads up because they are able to have surgery to reduce the size of the mass prior to starting chemotherapy. Surgery is not an option to my mom given her restrictions. I know that she is suppose to stay positive and continue to try all options to give her the best chance at quality of life. I am still at the fork in the road because I'm beginning to question the quality of life available to her when she is suffering so many side effects and limited options available to her. I don't mean to be negative but I also am realistic and want to be smart about the time my mom has left.
  • debrawylie
    debrawylie Member Posts: 12
    #18
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    debrawylie said:

    newly diagnosed update
    My mom is still in the hospital. She has had many tests done to detect and confirm there are no blood clots. She is now set to endure a blood transfusion today. The fluid around her abdoment will be drained after the transfusion at some point. Her legs will like wise be wrapped to help with the fluid retention once everything else is completed. My mom's restrctions because of her two anurisms makes everything a little more complicated. She is not like most patients who start this game with a heads up because they are able to have surgery to reduce the size of the mass prior to starting chemotherapy. Surgery is not an option to my mom given her restrictions. I know that she is suppose to stay positive and continue to try all options to give her the best chance at quality of life. I am still at the fork in the road because I'm beginning to question the quality of life available to her when she is suffering so many side effects and limited options available to her. I don't mean to be negative but I also am realistic and want to be smart about the time my mom has left.

    Update
    My mom was released from the hospital today. Her vision is very blurry so we are making appointment with eye doctor to get her lens she can see thru . . . her CA125 #is 630.8. While in the hospital, she received two transfusions b/c platelets were so low. Goes back to doctor on Wednesday to check platelets and to do lab to confirm she's able to do second round of chemo on Monday, 3/5. Doctor has said he's going to reduce strength b/c obviously first round was too strong for her. Internal medicine doctor is not very optimistic . . . this disease. Well, I won't say what I'm thinking. I'm not in a very good place. Thanks for listening
  • Pattyn
    Pattyn Member Posts: 47
    #19
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    debrawylie said:

    Update
    My mom was released from the hospital today. Her vision is very blurry so we are making appointment with eye doctor to get her lens she can see thru . . . her CA125 #is 630.8. While in the hospital, she received two transfusions b/c platelets were so low. Goes back to doctor on Wednesday to check platelets and to do lab to confirm she's able to do second round of chemo on Monday, 3/5. Doctor has said he's going to reduce strength b/c obviously first round was too strong for her. Internal medicine doctor is not very optimistic . . . this disease. Well, I won't say what I'm thinking. I'm not in a very good place. Thanks for listening

    Praying for your mom and for
    Praying for your mom and for you......try to stay strong.

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