Need a little pep talk

minky1225
minky1225 Member Posts: 70
edited March 2014 in Ovarian Cancer #1
Hello everyone. I want to start off by saying that I have read a lot of the posts on here and I am deeply inspired by the strength and courage.... this will be a long post so my apologies in advance.

My mother was just diagnosed with Stage IV ovarian cancer and I am petrified.. I just don't know where to begin. Her 57th Birthday is this Saturday and I am fearful that this might be her last...I'm so saddened that my heart hurts...

Prior to her diagnosis, she was hospitalized during Christmas week due to bronchitis. She was running a high fever and having chest pains. They released her when her symptoms seemed to subside. Not even two weeks later(Jan. 11) she was taken to the hospital by ambulance due to shortness of breath. When I arrived at the ER, they had already done tests and found a blood clot that started in her leg had traveled and was in both lungs... We were told that they would be giving her heparin via I.V. and that they were going to admit her just for observation. The very next day, I get a phone call that she is now in ICU and on 100% oxygen due to fluid in the lungs. I just assumed that it was because of the blood clots. When I got to the hospital, I was informed that the fluid is not in the lung but surrounding both lungs. There were drains put into her(which are still in now) to get rid of this fluid. When they did a test on the fluid-they found it to be cancerous(malignant pleural effusion). After several more tests and finding tumors everywhere, they gave us this life changing diagnosis-ovarian cancer stage 4. So far, they have operated on one lung. They put a talc powder in between the lung tissues to stop the fluid.They still have to do the other side once she can breath on her own without O2. Then they are going to start with the cancer treatments.I'm not sure if they are also going to do a full hysterectomy-I would assume so. The doctors have been incredible and so understanding. Their bedside manor is top notch. They really do care!

I am having a hard time dealing with this. I guess there is never a good time to find out this news. I got the news that she was in the ER on my first day at a new job-I am trying to separate job/personal but it's very hard at times. I am exhausted with worry.

I guess I'm just wondering if my feelings will ever be more tolerable. I put on a brave face all day at work and then lose it when driving home...

As far as Mom's feelings, I am so proud of her but also concerned that she is putting on a brave face. She just says that "Whatever God has planned will be the end result" and "I still have a lot of fight left in me."

Is it possible to have a decent quality of life for several more years with stage 4 ovarian cancer?

Any thoughts/prayers/suggestions will be greatly appreciated!

Bless you all

Comments

  • Lisa13Q
    Lisa13Q Member Posts: 677
    HI MINKY
    Hello Minky,

    My mother was diagnosed with Ovarian 3C on July 25 2009. I remember the day and the time. I went home petrified, I couldn't sleep and had never felt so alone even though my mpther was in the next room. I found this site and sent out a plea for help. I heard from a Saundra, and then a Bonnie and many others. I remember what they said and their words of hope but did not believe them. I only knew that I would never move emotionally from my fear and panic..I was so wrong. First, let me start by saying how sorry I am. Those words are amazing how they change you. But you WILL get through it. Tomorrow morning you will wake up and read the board and there will be many who will respond and you will first realize you are not alone, and then you will begin to absorb the information and do the next right thing. That's it. One minute at a time to start. Just the next right thing...Maybe that's just appearing at work. Maybe it's not making breakfast and stopping at mcD's rather than cook. In other words take care of yourself. Your equilibrium will come back and you will get perspective. But it takes a little time. Go spend time with your Mom if you can..trust what she says....YES IT WILL GET MORE TOLERABLE....I am amazed you can keep it together at work...Come here often....We will all say prayers for your mother tonight...
  • minky1225
    minky1225 Member Posts: 70
    Lisa13Q said:

    HI MINKY
    Hello Minky,

    My mother was diagnosed with Ovarian 3C on July 25 2009. I remember the day and the time. I went home petrified, I couldn't sleep and had never felt so alone even though my mpther was in the next room. I found this site and sent out a plea for help. I heard from a Saundra, and then a Bonnie and many others. I remember what they said and their words of hope but did not believe them. I only knew that I would never move emotionally from my fear and panic..I was so wrong. First, let me start by saying how sorry I am. Those words are amazing how they change you. But you WILL get through it. Tomorrow morning you will wake up and read the board and there will be many who will respond and you will first realize you are not alone, and then you will begin to absorb the information and do the next right thing. That's it. One minute at a time to start. Just the next right thing...Maybe that's just appearing at work. Maybe it's not making breakfast and stopping at mcD's rather than cook. In other words take care of yourself. Your equilibrium will come back and you will get perspective. But it takes a little time. Go spend time with your Mom if you can..trust what she says....YES IT WILL GET MORE TOLERABLE....I am amazed you can keep it together at work...Come here often....We will all say prayers for your mother tonight...

    Thank you Lisa13Q
    Thank you so very much for your words. I am like a sponge right now-just trying to take it all in. You have helped me tremendously this evening...I really do appreciate it.
  • Lisa13Q
    Lisa13Q Member Posts: 677
    minky1225 said:

    Thank you Lisa13Q
    Thank you so very much for your words. I am like a sponge right now-just trying to take it all in. You have helped me tremendously this evening...I really do appreciate it.

    to Minky
    Glad I could be here, just wait until Saundra and Bonnie get back to you and barbara53. All strong kind women who have been through it all. I know the feeling initially of writing a post and wondering if anyone can answer my question or understand me. I am always amazed by the responses.. You're in the right place......
  • Marydale
    Marydale Member Posts: 3
    Hi Minky
    I have been reading these posts for quite some time and find myself returning often to see how everyone is doing. I read yours this morning and was compelled to write in. I was diagnosed with stage 4 ovarian cancer in May 07. I was 57 years old. I also had blood clots in my right leg and fluid on my right lung. After my hysterectomy I underwent 6 rounds of carbo/taxol. It has been three years since my last treatment and I have been well. CA 125 is at 7. Under 200 when I started. I have two daughters, 28 and 30. They do not want to lose their mommy and they haven't yet! I know they were frightened but they kept me centered and never let me know that I couldn't beat this disease. Support your mom anyway you can and know that the human spirit is strong. She knows you love her. I will keep you in my thoughts as I do for everyone on this board.
  • Barbara53
    Barbara53 Member Posts: 652
    what time you get
    Exactly one year to the day ago, I was where you are now. I remember where I was sitting, what the room felt like, etc., when Mom called to tell me of her diagnosis. A lot has changed since then! She has fought the beast with great bravery and I have been her first lieutenant. In many ways, it has been the best-worst year of my life. I think she would say the same thing.

    Thinking back to a year ago, when Mom was in the hospital with her big surgery, it was the little things that helped so much. Bringing her own pillow in a pink pillowcase, an extra blanket from home, fresh gowns and robes, those kinds of things were what she needed. It makes you feel SO GOOD to provide the smallest of comforts.

    Hang in there. You both will be okay.
  • saundra
    saundra Member Posts: 1,370 Member
    YES, Indeed
    I am Stage IV, and diagnosed on Mar. 2, 2007, almost three years ago. I did not have lung involvement but had three 2.5 inoperable lung tumors and multiple others throughout the abdomen. I had to have 4 chemo treatments (taxol+carbo) before they could operate. My CA125 (ovarian cancer blood marker) was 2999.
    After the four treatments the CT scans showed at least a 50% decrease in all tumor size and a blood test CA125 of 35 and I had the major surgery. I was 69 years old.

    Your mother is younger and has great faith. Faith and attitude (fight) is much of recovery. This diagnoses is much like getting hit in the forehead with a sledge hammer. It comes out of nowhere and is devestating to the patient and her children. Try to take it a day at a time, know that there is hope, and rely on your faith to give you the strength you need day by day. Take notes on what is said and treatments. They will come in handy for your mother later. It is hard to remember in the fog of early diagnosis. Get copies of all tests if you can and start a file to look back on. You will settle down and deal with it all in order to be a support to your mother.

    Yes, it is possible to have a wonderful life with this disease and become a strong warrior. It will be different but worth the effort.

    Take care and keep us posted as you have needs and time. Saundra
  • msfanciful
    msfanciful Member Posts: 559
    Yes It's Possible.
    Hello,

    Yes Minky, it's very much possible.

    The human spirit is very resilient during times of adversity.

    I am a stage 4 ovarian cancer survivor of 3 years next month.

    I was admitted via emergency with pneumonia, it was at this time with various tests, that
    my lymph-nodes and masses were discovered as well.

    My count at that time was 1400 and with my first regimen of carbo and taxol my counts de
    creased significantly by 50%.

    My current count is 37. But the Ca-125 is not totally an absolute science, so tell your mom
    not to get caught up in the numbers, it can drive you mad.

    I am living proof that this disease can be treated as a chronic illness through ones life
    rather than a death sentence, do don't even think in that vein.

    I have since been sky-diving, got my first tattoo (and I'm really not a tattoo person), and I am mastering my second lanquage very well. Yo ahora habla espanol muy bien.

    My heart goes out to you and your mother, but you know what really made a difference for
    me? Truly?

    My beautiful daughter who was and is always there to say "Mom I really don't see this
    cancer taking you away"

    Now call it wishful thinking (my daughter is very insightful), so it always encourages me
    to believe her words ring true. They have so far! Leave in up to the initial doctors who
    examined me... they were already trying to prepare me and my family for my death in a matter of 3-4 months? The gall! So don't get totally caught up in their opinions, just
    get the facts and focus on helping your mother to heal through this scary time.

    I have a feeling that you are a great daughter (as is mine), and it is going to do
    wonders for your mother to here and see your positive spirit and strength as it also did
    for me.

    I will keep you in my prayers for peace to come to you.

    Love,

    Sharon
  • minky1225
    minky1225 Member Posts: 70

    Yes It's Possible.
    Hello,

    Yes Minky, it's very much possible.

    The human spirit is very resilient during times of adversity.

    I am a stage 4 ovarian cancer survivor of 3 years next month.

    I was admitted via emergency with pneumonia, it was at this time with various tests, that
    my lymph-nodes and masses were discovered as well.

    My count at that time was 1400 and with my first regimen of carbo and taxol my counts de
    creased significantly by 50%.

    My current count is 37. But the Ca-125 is not totally an absolute science, so tell your mom
    not to get caught up in the numbers, it can drive you mad.

    I am living proof that this disease can be treated as a chronic illness through ones life
    rather than a death sentence, do don't even think in that vein.

    I have since been sky-diving, got my first tattoo (and I'm really not a tattoo person), and I am mastering my second lanquage very well. Yo ahora habla espanol muy bien.

    My heart goes out to you and your mother, but you know what really made a difference for
    me? Truly?

    My beautiful daughter who was and is always there to say "Mom I really don't see this
    cancer taking you away"

    Now call it wishful thinking (my daughter is very insightful), so it always encourages me
    to believe her words ring true. They have so far! Leave in up to the initial doctors who
    examined me... they were already trying to prepare me and my family for my death in a matter of 3-4 months? The gall! So don't get totally caught up in their opinions, just
    get the facts and focus on helping your mother to heal through this scary time.

    I have a feeling that you are a great daughter (as is mine), and it is going to do
    wonders for your mother to here and see your positive spirit and strength as it also did
    for me.

    I will keep you in my prayers for peace to come to you.

    Love,

    Sharon

    Thank you all so much!
    I thought I knew exactly what role models were...up until I joined this site! I just got very emotional reading all of your posts and it really puts life into perspective for me. Thank you for listening, thank you for responding, and thanks for all of your bravery-I can feel it!

    I cannot wait to share this advice/website with my siblings. I am the youngest out of 4 children, not quite a baby at the ripe old age of 28, but my older siblings still characterize me that way and like to handle me "with kid gloves". It fascinates me on how differently the 4 of us are dealing with this. My sister is in a weird stage of anger where she wants to blame someone or something for my mother's ailment. I haven't gotten to that stage yet.(Hopefully, I never will.)

    To complicate things with Mom, she almost lost her life 2 years ago from a rare blood disease called TTP. She was treated several times a day using a process called plasmapherisis so the doctors have to be careful to monitor this as well. This woman has beat the odds over and over again. Side bar, she also had a brain aneurism about 5 years ago and a massive heart attack 13 years ago. This is not the first time that the doctors have put an expiration date on her...and she always manages to pull through without quitting her smile!

    Mom is a remarkable woman. For a living, she works for a non-profit organization that gives pregnant teens a place to live, supplies food and clothing, and even lets the teens stay for up to a year after having the baby. My Mom is the House Mother there and teaches these girls how to properly care for their babies as well as themselves. She also lives there full time!

    My only issue with her having this job now is that she does not have medical benefits and makes an extremely low salary. I hope that she will not be financially burdened if "the tab" is not picked up by medicare as a charity case. I know she is worried about this. I also am worried that the doctors are not going to treat her the same as they would if she did have insurance-although I have not seen this.

    I spoke to Mom on the phone today and she sounded wonderful! They had removed one drain from the left lung,the right lung still has fluid. She went through grueling PT today-she has not walked since Jan. 11. She was exhausted but still in great spirits! For her birthday on Saturday, I am going to get her a huge steak with all the 'fixins from Outback and bring it to her. She has no diet restriction and she is getting her appetite back-all she wants is a steak!!!!!!

    I think they might start Chemo as early as tomorrow but I'm not too sure. I am never there when the docs are there and I hear everything from my siblings or Mom.

    Again, thank you to all of you wonderful people and I will keep in touch! You are strong and courageous and I want to be just like you... You all are my role models!
  • worriedaboutmom
    worriedaboutmom Member Posts: 31
    minky1225 said:

    Thank you all so much!
    I thought I knew exactly what role models were...up until I joined this site! I just got very emotional reading all of your posts and it really puts life into perspective for me. Thank you for listening, thank you for responding, and thanks for all of your bravery-I can feel it!

    I cannot wait to share this advice/website with my siblings. I am the youngest out of 4 children, not quite a baby at the ripe old age of 28, but my older siblings still characterize me that way and like to handle me "with kid gloves". It fascinates me on how differently the 4 of us are dealing with this. My sister is in a weird stage of anger where she wants to blame someone or something for my mother's ailment. I haven't gotten to that stage yet.(Hopefully, I never will.)

    To complicate things with Mom, she almost lost her life 2 years ago from a rare blood disease called TTP. She was treated several times a day using a process called plasmapherisis so the doctors have to be careful to monitor this as well. This woman has beat the odds over and over again. Side bar, she also had a brain aneurism about 5 years ago and a massive heart attack 13 years ago. This is not the first time that the doctors have put an expiration date on her...and she always manages to pull through without quitting her smile!

    Mom is a remarkable woman. For a living, she works for a non-profit organization that gives pregnant teens a place to live, supplies food and clothing, and even lets the teens stay for up to a year after having the baby. My Mom is the House Mother there and teaches these girls how to properly care for their babies as well as themselves. She also lives there full time!

    My only issue with her having this job now is that she does not have medical benefits and makes an extremely low salary. I hope that she will not be financially burdened if "the tab" is not picked up by medicare as a charity case. I know she is worried about this. I also am worried that the doctors are not going to treat her the same as they would if she did have insurance-although I have not seen this.

    I spoke to Mom on the phone today and she sounded wonderful! They had removed one drain from the left lung,the right lung still has fluid. She went through grueling PT today-she has not walked since Jan. 11. She was exhausted but still in great spirits! For her birthday on Saturday, I am going to get her a huge steak with all the 'fixins from Outback and bring it to her. She has no diet restriction and she is getting her appetite back-all she wants is a steak!!!!!!

    I think they might start Chemo as early as tomorrow but I'm not too sure. I am never there when the docs are there and I hear everything from my siblings or Mom.

    Again, thank you to all of you wonderful people and I will keep in touch! You are strong and courageous and I want to be just like you... You all are my role models!

    In the same boat
    Hi! I read your post and got chills because I know EXACTLY how you feel. It's just like someone punched you in the gut. My mom was diagnosed last march on my birthday of all days with stage 4 ovca. I brought her to the ER thinking she had the flu and that was the sucker punch we got. They told us she would not survive more than about three weeks if we did not get her on chemo asap. That was 10 months ago-and we are still battling, but she is still alive. You are remarkable for being able to go to work-I wasnt able to go to work for 2 weeks and slept beside my mom on the floor every night watching her to make sure she would keep breathing. I had to take xanax because i would have anxiety attacks and hyperventilate for those first two extremely hard weeks. I know it is all extremely overwhelming and it is so scary not knowing what is going to happen, but it does get easier. I just want you to know that you have a friend that is in the same boat. All of these ladies on this board are absolutely wonderful and I have found so much solace and comfort in their caring words and advice. My mom is battling a setback right now, and I understand how hard it is on you and your family as I am absolutely drained right now. I am 34, my mom has been my best friend and has helped me raise my children. I absolutely cannot imagine being on this earth without my mom, so I am praying hard for you and your mom. Try to get rest-I got some ambien from my dr and it seems to help keep me from laying in bed at night worrying and crying. This is a hard road, but many of the members of this board have been around for several years with this disease, and our moms can be too. Everytime my mom starts to worry and wonder "what if", I tell her about the wonderful strong women on this board and it gives her hope. Hang in there, and know that you have a lot of love and support on this board. I am praying for you and your mom!
    God Bless
    Becky
  • Mawty
    Mawty Member Posts: 133

    In the same boat
    Hi! I read your post and got chills because I know EXACTLY how you feel. It's just like someone punched you in the gut. My mom was diagnosed last march on my birthday of all days with stage 4 ovca. I brought her to the ER thinking she had the flu and that was the sucker punch we got. They told us she would not survive more than about three weeks if we did not get her on chemo asap. That was 10 months ago-and we are still battling, but she is still alive. You are remarkable for being able to go to work-I wasnt able to go to work for 2 weeks and slept beside my mom on the floor every night watching her to make sure she would keep breathing. I had to take xanax because i would have anxiety attacks and hyperventilate for those first two extremely hard weeks. I know it is all extremely overwhelming and it is so scary not knowing what is going to happen, but it does get easier. I just want you to know that you have a friend that is in the same boat. All of these ladies on this board are absolutely wonderful and I have found so much solace and comfort in their caring words and advice. My mom is battling a setback right now, and I understand how hard it is on you and your family as I am absolutely drained right now. I am 34, my mom has been my best friend and has helped me raise my children. I absolutely cannot imagine being on this earth without my mom, so I am praying hard for you and your mom. Try to get rest-I got some ambien from my dr and it seems to help keep me from laying in bed at night worrying and crying. This is a hard road, but many of the members of this board have been around for several years with this disease, and our moms can be too. Everytime my mom starts to worry and wonder "what if", I tell her about the wonderful strong women on this board and it gives her hope. Hang in there, and know that you have a lot of love and support on this board. I am praying for you and your mom!
    God Bless
    Becky

    So true
    Becky, you're so right about the wonderful, inspiring women on this board. I'm on my second regimen of chemo, and I do believe without the inspiration of the ladies, I would be scared half to death. But because of those who have been going through this for so much longer, I know I can too. I will pray for your mothers, Becky and Minky.

    Marty
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    Firstly I am so sorry to
    Firstly I am so sorry to read this sad story about your mum. I do understand and have experienced the fear of being told your mum has this "life threatening" disease. 2006 my mum told me she had bowel cancer and because it was my mum it "ROCKED MY WORLD". Unfortunately she died in 2008 and I was priviledged to have been able to help my dad nurse her through her last days. The time from diagnosis to the end of her life was very special for us as we were always open and honest and got to spent quality of life together. I am not trying to paint a gloomy picture (my mum was a poorly lady before she had cancer) what I am trying to do is point out that each day is special and cherish all the time you spend with her during her treatment and beyond through to recovery.

    I don't actually have ov cancer, mine is in the lining of the abdomen (peritoneal cancer) but treatments are the same. I too found out about it when I went to the hospital thinking I had pneumonia. I hadn't but I did have fluid around my lungs and discovered there were cancer cells & malignant pleural effusion was diagnosed. I ended up having 4 drains altogether while I was waiting for the chemo to do its job. Good luck to your mum & tell us what happens. Love Tina xx
  • Dva360
    Dva360 Member Posts: 4
    I was just there
    Hi Minky,
    My name is Nurisse. I was just where your mom is. I had blood clots too. Same thing from my leg to my lungs. They found them in Feb. 09, put me on blood thinners. Then in May I went to emergency because I had blood in my urine. They found the cancer Ovarian stage 4. Please read my page to get the entire process I went through. The thing that helped me was learning that I had control of my body. I changed my pH balance and got off the blood thinners and shrunk the tumors. Yes I did what the doctors wanted me to do, chemo, but that was killing me while it was killing the tumors. I don't want to scare you but it is very scary. Staying positive is half of the cure. Getting rid of the acidic body is the other. I am hopeful that your mother will be okay. I had so much disease, tumors, they could not operate. I'm now in remission. Best wishes to your mom and your family. Everything will be okay.