Now What: Life After My Mom’s Death

September 22, 2010 at 10:00 am , by

amanda-momI ended our November story of my mom, Janice Alexander’s, fight with (and death from) ovarian cancer with her memorial service. But of course that’s not the end of the journey for my sister and me, or the end of her legacy. If you’ll let me share a little more (and Lord knows I’ve already taken up a lot of your time and, I suspect, tissues if you made it through all 4,375 words with me), I’ll tell you what it’s been like in the eight months since my mom passed away.

BATTLE SCARS
Those 21 months of stress and worry and exhaustion and pain—it’s funny how that sometimes feels like the easy part now. I feel fundamentally changed by my experience of being my mom’s caregiver. I can’t put my finger on what’s different, exactly. I imagine this must be (a very small version of) what a soldier feels when she returns home from battle. I’m still myself, of course. I miss my mom constantly, but I’ve gotten to the point where most of the time I can go about my day in good spirits, and feel that I’m living the life she’d want me to live. But in a strange way I feel simultaneously stronger from my experiences, and more brittle.

I went to a grief counselor for a few months after mom’s death (through Cancer Care, a wonderful organization). She said something that stuck with me. “It’s always going to be sad, but hopefully time will make it less painful.” So deceptively simple, but true. It’s okay to be sad. Forever. It’s just plain sad. But it’s going to be (and already is) less raw, less sharp. I’ll always carry this with me, but time will help dull the edges.

PICKING UP THE PIECES
And then there’s the practical stuff. It turns out that managing my mom’s Ohio estate from New York is nearly as challenging as managing her care was. She did an amazing job of getting her affairs in order for us, but there were still a ton of decisions that had to be made and tasks to be done. My sister, Audrey, and I have made almost as many trips back to Ohio for the estate as we did while we were taking care of her. There was, I’m not ashamed to admit, a feeling of relief after the ordeal of her illness was over. Of feeling like, “This is a really crappy time, but maybe I’ll at least get a break.” Not so much. Mom lived alone and since neither of us want to move back to Ohio, Audrey and I had to deal with all of the usual legal and accounting stuff, plus her house and a lifetime’s worth of possessions. Because we’re out of town and the house is empty, every little task is about 10 times harder than it should be, and requires a ridiculous amount of coordination.

DETAILS, DETAILS
Every time we’re in Ohio, we have to cram a month or two’s worth of tasks into three or four days; from the physical (yardwork, cleaning, painting, project after project) to the emotional (How can we possibly decide who gets to keep that sentimental tchotchke?). At first it was a great distraction from my grief, the busy work. Now I’d just like to be done. I guess that’s the emotional place you have to reach to be okay with selling your childhood home. It feels like we’re in the home stretch now though–I’m going back to Ohio (again) next week to do a major cleaning and stage the house to put it on the market. (After a back-breaking week of sorting through and boxing every single possession, countless trips to Goodwill and hospice, an auction, a bathroom renovation, a new patio, thousands of dollars of yard upkeep, a brand-new paint job on the entire interior, countless other projects and a small fortune in plane tickets, we’re nearly there.) Oy.

AND THEN A WEDDING
I’m also in the midst of planning a wedding, which has its tough moments: when I realize she won’t be able to walk me down the aisle like we’d planned, or when I have to explain to the florist that I only need one mother’s bouquet, not two. I’m a planner and organizer by nature but sometimes the stress of dealing with the long-distance house and the wedding gets to be too much and I have a bit of a freak-out. (Why can’t someone else, anyone else, be in charge of something for once?! I’ll wail in self-pity.) But it hasn’t been all stress. This summer I’ve taken trips to visit friends that I had been putting off while my mom was sick. I’ve been trying really hard to take better care of myself (with mixed results; must get back to the gym…). And my fiancé has been so ridiculously understanding. I hardly know how he puts up with me sometimes when I’m in my moods, but he always, always manages to cheer me up.

RELIVING THE STORY
Now that I see my mom’s story in print, I’m so glad I wrote it and so grateful to LHJ for giving me the space to do it. My mom always wanted to write a book and even though I hate that this is the part of her story that I had to tell, I’m glad I got to share it and help raise awareness about this terrible disease. But that doesn’t mean it wasn’t really painful. I think about and miss my mom every single day. Sometimes I talk to her in my head. There’s a man in the part of Chinatown that I walk through every day who sells painted name signs to tourists. Every once in a while one of the names on his display is Janice, and it gets me every time. The other day I heard Israel Kamakawiwo’ole’s “Somewhere Over the Rainbow” on Pandora, the song that we used for her memorial service. Insta-tears. But the process of sitting down and dredging up every painful experience from beginning to end—ouch. Big time. But also so very worth it.

MOVING FORWARD
And now, finally, enough about me. If you’ve been through a battle with ovarian cancer as either a patient or a caregiver (or want to share your experience caregiving for any condition), I’d love to hear from you. If you’ve never had a chance to share your story but want to, please do. I’m going to stop talking (phew!) and start listening.

125 Responses to “Now What: Life After My Mom’s Death”

  1. Thank you for sharing your story. I lost my Mom in June and the things you shared helped me to realize that it is all normal. There will be good days and bad but the Lord will lead us through.


  2. I can relate to your ordeal with settling your Mom’s estate. My Mom passed away last year in October and she lived in Germany. I left NC while she was still alive, however, when I got there, she had passed away. Hers was an accident, tripping over a throw rug and breaking some bones. While she was in the hospital she get pneumonia and passed away. I had to settle her estate and delete her household, I am the only child and survivor. I paid hospital and doctor bills and dealt with the insurance from here in the USA. I was glad that I had a great contact at her bank who worked with me and helped me with a lot of items. However, now that it has been almost a year since she passed away, I am still full of sorrow and have many bad days.
    I will be going back to my home town next spring and visit her in the cemetery.
    I will pray for you to get through your bad days. God bless you.


  3. I worked with your mom and became good friends with her. It is wonderful to pay tribute to her in this way. She was an amazing woman and there is not a day that goes by that I don’t think of her and wish she was still here. Good luck with your wedding, but really she will be there even if you can’t see her. Hope you and your sister are doing well. She was SOOO proud of her two girls. Take care! Tiffany Baker, Dover, OH


  4. Your story really moved me. I lost my mother to ovarian cancer when I was 21. She passed away in
    1977.More research needs to be done for this cancer. It has been 33 years and I think of her everyday. You and your sister have the gift of memories of an amazing mother. Her courage and strength was so strong. I hold those same memories in my heart each day. May God Bless you and your sister.
    Lisa G. Ewell
    Medford NJ


  5. Thank you all so much! I knew this story would probably strike a chord with people, but I am still overwhelmed and so touched by all of the love and support, and so honored that people are also choosing to share their own stories with me and the world.


  6. i can’t begin to tell you how much this story touched my soul. I lost my mother to ovarian cancer in 1986 when she was 53 years old and I was 25 and the oldest of three girls (and having lost my father 6 years before that). it so hard to speak of to people who have not gone through the excrutiating pain of losing your mom. thank you for so eloquently puttin those feelings to paper. You have no idea how it helps!


  7. Hi Amanda,

    My sister and I lost our mother to ovarian cancer with abdominal metastasis on August 28th, after a hard fought 18 month battle. There are so many similarities between your story and ours. My sister saw your article and immediately called me and read it to me over the phone…

    Similarities include the original symptoms prior to diagnosis, devastating Stage 4 news: adenocarcinoma with ovarian primary, the malignant ascites,chemo, weekly paracenteses, the care-giving, the 3 am morphine, the painful decision to call hospice – all of it. The last few weeks of her life,my sister slept in the bed with her, watching her breathe, and I slept on the floor. I would like to email our story to you but cannot find your email address. I will email it to your VP, Julie Pinkwater, if that is okay. Hopefully it will get to you.


  8. Amanda,

    I want to let you know how much I appreciate the time you took to tell your Mom’s story. I believe that ovarian cancer is not focused on enough. My family gets frustrated because of the focus on breast cancer. While breast cancer is devastating, there are so many other cancers that are killing people everyday.

    My Mom was diagnosed similarly with a pain in her left side. She ignored symptoms for months and by the time she decided to see the doctor, she was in surgery 3 days later.

    My Mom died August 21 and she battled the disease for 3 years and 8 months. She was healthy and young (57 years old). She gave to everyone and loved life. She never complained and tried different chemo treatments, diets and exercises to keep healthy. She went into remission twice during that time, but in the last 6 months of her life her body was ravaged by cancer. The same week she decided to stop chemo and enter hospice she died.

    My Mom did not want us to be sad at her funeral, so we danced at the end. It broke my heart, but it’s what she would have wanted.

    Thank you again for bringing some much needed attention to ovarian cancer.


  9. My sister and I lost our mom 10 years ago to
    pancreatic cancer but the similarities to your
    sadness are amazing. From diagnosis to her death
    was a short seven weeks. We, too, sat w/our
    mom and dad, talking, singing, laughing and
    most of all, crying. The sadness, emptiness,
    void in our life never goes away or gets any
    better…….it just becomes less painful. My
    mom’s death was a very painful process but she
    went through it with such grace and dignity.
    We love her and miss her every day. Thank you
    for your story. I’m sorry for your loss. Your
    life has forever changed.


  10. Hi Amanda

    Thanks for sharing your story. My mother had breast/ovarian cancer and passed away as a result of the ovarian cancer at the age of 55. While it’s been just about 8 years now, sometimes it feels like it was yesterday. Particularly after reading a similar story, like yours, it brings me right back to her hospital room and our last few days together.

    While I can tell you the constant pain subsides, I’m not sure it’s ever really easy dealing with your mom’s loss. I certainly am not consumed by her death every minute of every day, but I sure do miss her. (all the time).

    That said, life does go on and it does get better. Special occassions – like weddings, babies etc are never easy, but I try to remember how my mother approached life and the importance of embracing every day (not trying to rush through it all)and being happy (or at least trying to.) So, with your wedding approaching – know that your mom’s absence will be felt but that all of the love from your family and friends will make the day easier and of course, should be such a happy occassion.

    Good luck with everything and again, thanks so much for sharing!


  11. Amanda, I lost my mom to ovarian cancer in 1998. She was 52; I was 23. I got married 16 months after she died. I can relate to your story in so many ways.

    Thank you for sharing your story. I hope that it raises more awareness of this terrible disease.

    Alyssa up there said everything so well; it does get better but I do miss my mom.

    Take care of yourself.


  12. Thank you for sharing your story. I cried when I read it, because I feel your pain so deeply. I lost my mom at 21, to ALS, she was only 50. I’m at a loss for words right now. I’ve been without my mother for 17 years, and time does help but being without your mom at any age is not natural.

    You are your mother’s daughter in so many ways, your strength and courage shines through.

    May God Bless you and your sister.


  13. I lost my Mom to ovarian cancer 11 years ago. She was 54 when she died, far to young and beautiful. Not a day goes by that I don’t miss her, but I feel her with me all the time. I know that sounds corny, but it’s true.
    Good luck with your wedding. Your Mom will be there with you!!


  14. I was 30 and my mother got sick, she had had lymphoma? as a child but went on to have two children and lead a pretty normal life. At the age of 58 she developed breast cancer, then a few months later it went to her brain and she was n the hosptal for two moths before dying at 59, It was the hardest time in my life, single and having to also take care of my dad and etc.
    At the age of 45 I felt something above my pelvic bone, when they opened me up they found I had stage one ovarian cancer, wow what a surprise, premature hot flashes, mood swings and really noone to talk to.
    Now I volunteer at Gildas club which anyone that s affected by cancer should become a member.
    Support groups are so important. Watching your mother die changes you for a lifetime


  15. Thank you for sharing your story and helping to educate so many women. I was diagnosed at the age of 37, 9 years ago. Thank G-d I had amazing doctors who helped to bring me to this point. Thank you for helping to bring this issue to so many women – knowledge is power. Hopefully it will help other women to pay attention to the subtle signs – there is hope. Good luck with your wedding, may you only have joy and happiness in the future.


  16. Amanda, your story brought me to (many, many) tears, especially since it hits so close to home. I’m 24 years old and living in NYC, and my mom – who lives back home in the Midwest – was diagnosed with stage IV ovarian cancer earlier this year. She’s had a lot of complications since, and I’ve spent as much time with as possible visiting and caring for her, even to the detriment of my own career. I’m eaten up with guilt each and every day I’m not there at her side, even though I rationally know that she wants to me to live my own life. I plan to be there for care for her through the final weeks of her life, though the prospect devastates me. I really admire your strength and courage – I know how very difficult it is. Thank you for sharing your story, and best wishes to you and your sister.


  17. Thanks for sharing your beautiful story, it couldn’t have come at a better time. I have a very close friend suffering from ovarian cancer and received some depressing news today. I tried my best to comfort her and console her but it was hard. She has been so strong throughout her 2 1/2 year battle but I feel she is feeling overwhelmed. Reading your article came at the perfect time. I gained insight and wisdom from it. Thank you.


  18. Amanda…I was 47 in 2002 when I had vague symptoms and a swollen abdomen and one evening when raising my right leg to put on my jeans my leg came in contact with something SOLID. I had my annual Dr. appointment coming up in a week or two and told him that there was a solid mass and he examined me asked if I had left a urine sample and said he wished he could tell me I was pregnant! I knew whatever was wrong was BAD if that was the option he had hoped for. My tumor was the size of a volleyball but luckily not attached to anything else. The tumor leaked fluid at the time of surgery but my OB/GYN, surgeon and family physician did a “wash” of my interior, took lymph nodes, a total hysterectomy and also felt all surrounding organs for lumps, bumps, etc. They also took out the omentum tissue. I was one of the few “lucky ones” who have survived the past 8 years “cancer free”. I keep asking myself, “WHY”? I was able to be with my dad during his fight with pancreatic cancer, my brother-in-law with lung cancer which they lost, my mother-in-law with colon cancer at age 94 still going at 96 and now my husband with multiple myeloma!!! What you said about her deserving your time and care is right…look at all the years she cared for you. Don’t feel guilty for the “relief” after her passing. My dad suffered so much that I prayed that God would take him and when HE did I felt the loss but great comfort that his suffering was over. We all pray that researchers are getting closer to making cancer a thing of the past with vaccines, new less harsh treatments and DNA, stem cells and targeting specific cells to rid the world of a multi-faceted killer. Your candor was beautiful in that it puts the spotlight on the fact that younger women are being diagnosed with ovarian cancer and we need foolproof ways to detect it in its earliest stages so no more young daughters will have to deal with what you and your sister have had to go through at such young ages. Thoughts and prayers for your family to help you in getting past the grief and loss.


  19. Amanda:

    A great story and fitting credit to what sounds like an amazing mother,

    As a mother battling ovarian cancer, it helped me see things from the perspective my daughter might be seeing them as she deals with my disease yet has her own life to live.

    Ovarian cancer is not called the silent killer for no reason. Signs and symptoms often do not appear until late stage disease where options are limited and qualify of life is often impacted.

    There is no Avon Walk for ovarian cancer; there is no Susan B Komen for ovarian caner and yet the percent of woman dying from ovarian cancer each year is great. I would like to see that change in my lifetime. Hopefully awareness in publications such as yours will increase awareness and perhaps generate corporate sponsorship for this very worth of causes.

    Thank you for sharing your story and reading mine,


  20. Amanda -
    Thank you so much for your wonderful story! My mom died from ovarian cancer on October 19, 2009 at the age of 59 after a year-long battle. These past few weeks have been the most difficult ones for me, as I relive those last weeks of her life. I miss my mom every day and wish she’d had the opportunity to watch her grandchildren grow up, but I know her suffering is over.
    Thank you again for bringing more attention to ovarian cancer.


  21. Amanda-
    Thank you for having the strength to write about your journey! My mom, Mary Ann, was diagnosed with stage III ovarian cancer in April 2006. She had been a post-partum nurse for over 30 years and loved taking care of everyone else! We were devastated when the cancer was confirmed. As I read your words, I was overwhelmed in the similiarities…the wig shopping, the belly-draining, sleeping with mom, chicken Marsala was a request once mom got home and hospice care had begun. I believe she knew she wouldn’t be here that Christmas and we also put together gifts of jewelry to give girlfriends and family! My mom was a journal writer/card maker and I sat by her bed during those last few weeks writing her words to share with my daughters and future grandbabies. It will be 3 years on Nov. 13th that mom journeyed to her Heaven and I still relive those last few months. She was 60 years young. I continue to tell myself that it was such an honor that mom allowed us to be by her side every inch of the way. The missing of the mother..the best friend.. is beyond words–wouldn’t you agree? I am so happy that you could share your story in LHJ. I truly believe that a greater awareness of ovarian cancer needs to be made…without ovaries we wouldn’t be here!! Thank you so much for sharing your life story and our condolences on the loss of your mom.


  22. Amanda ~
    Thank you for writing what many of us have felt and dealt with…my mother passed away from OC at the age of 59 in 1986 not long after being dianosed…my only sister at the age of 58 in 2008 after first being diagnosed in 1993. Hope all who are reading and commenting on your story will also take care of themselves and look into the hereditary aspect of this devastating disease. My best wishes to you on your upcoming wedding and good health to both you and your sister.


  23. Amanda-
    Thank you for sharing this heartfelt story. I lost my Grandma to OC in August 2009 with Stage 3C (almost Stage 4 though). I know that my family can relate to a lot of the things you went through. She was diagnosed while she was in surgery to get her gall bladdar removed and it came as quite the shock.. how can somebody so healthy and active become somebody so weak and defenseless so quickly? We, like you, had so many ups and downs of treatments and other issues occuring because of the treatments or whatever. I just want to give some encouragement because it must be terribly difficult to plan your wedding without your Mom. My wedding happened to be the last event that my entire family was together for prior to her diagnosis. I just hope and pray that you have a beautiful day and I want to know that your Mom will be smiling down on you. Let her legacy shine and be a part of your wedding day. And yes, it’s ok to cry because she isn’t there but smile too.. she would have wanted that.
    God bless both you and your sister.. cling to each other and be there for each other because the process of grieving is a road that can be. Sorry to be long winded but know that prayers and thoughts are being sent your way.


  24. Your story was very touching. I was diagnosed this past January with stage 3c ovarian cancer. I have two daughters who are married and with children. You and your sister should be very proud of yourselves for how you cared for your mother. You two are a testament to the fact that your mother was a wonderful woman. She will always live on through the two of you.
    I received good news Oct 12 that I was in remission. The story as you know does not end there. We have to keep on fighting and praying that the cancer stays away.
    Your story was wonderful and I know, being a mother, that your mother is very proud of you. Now and forever.
    Thanks for sharing


  25. Amanda your story touched me sooo much…Especially the part where you said when your mother looked up at you and said “you are going to make a great mother” you said that you knew that she knew she was not going to be here to see her grandchildren. My mother had gotten to the point where she could not hold her urine because of the pressure from the tumors, I was cleaning up an accident one night and she laid there and she said to me you and Shaun (my husband) are going to be blessed one day, because you gave up your life to take care of me. I did not understand that until I read your story last night and it was clear to me at that moment she was telling me she was not going to be here much longer. I moved in with my Mom who was diagnosed with Peritoneal Cancer in 2003 which is treated like OC. I wish there was more research done on it, like the genetics of it. She passed away at home 9/17/2007 at 4:00am and it is the one night before and day that I remember so vividly. I miss my Mom every single day that goes by….and the days when it is really hard I deal with it, I don’t hide my feelings because she was MY MOM how could I ever forget her….My Mother was a strong woman that I felt nothing like cancer could take her down, she touched so many people in her 63 years of living.

    Her last months of life she was like a newborn baby, ate, sleep, never complained and helpless. Once the cancer metastasis to her bones and organs it was not long at all she began to waste so bad….but at the same time you could see the fight in her trying to keep an appetite so she could eat for strength but when she could no longer fight she gave up and that is when my strength kicked into high gear!

    I am thankful that I was the chosen one! God blessed me abundantly to been apart of his creation life and death!! God bless you and so many other MS (Mom Survivors) we made it!


  26. Amanda,
    Thanks for sharing your story and yes, I did go thru a few tissues! I lost my sister in December 2009 from ovarian cancer (Stage IIIC) after a year long battle. She was 63 years old.

    She lived in CA and I in OH so I only saw her annually. I was able to be there for her passing and it by far the hardest thing I have ever done to date. I think of her every day; I miss our marathon phone conversations we would always have. I have taken to writing in a journal things I would have told her thru phone conversations. I have also gone thru the process of moving personal items from her condo. Good luck with the selling of your mom’s house. I’ve kept the condo and rented it out for now.
    It’s sad that OC has taken a back seat to other cancers that are getting a lot of recognition. Hopefully that will change thru getting the word out.
    Thanks, again, Amanda


  27. Amanda,

    You are so very strong. I know that God is with you and your family everyday. He will guide you just like he did when your mother was alive. I was reading your story today at work. I coundn’t put it down but your story of your mother touched me so much that trears were running down my face with such sadness. My coworkers were asking what was wrong. It felt as if my own mother had passed.I don’t even know your mother but your story made me feel so close to her and you. What fear you must have felt. I want to honor you for being such a wonderful daughter and caring for your mother the way that you did. Im sure she is very proud of you for all that you have done in life. Keep being strong for your family. Remember all the great times and you will have a smile on your face. Congrats. on the wedding plans. It will be fine. Think positive. Your a kind soul. Take care
    Sheri Jackson from Jacksonville,Fl Age 41


  28. Thank you for sharing your story and showing how ovarian cancer devastates families and women who are just entering the prime of their life. I am so sorry for your loss.

    I was diagnosed last January (2010) at the age of 50. I had subtle symptoms, mostly fatigue, but as a divorced mother of 5 daughters ages 12-20, I thought it was normal. It was not until my stomach became rock hard and I could not breathe that I thought something was wrong. I hope in my lifetime that this disease gets the attention that it deserves and that they can find a cure. I can’t you how many people just assume that I have breast cancer – apparently the world thinks it is the only cancer that women get. Thank you again for sharing. All my best for you and your sister – your mother was lucky to have you two.

    Mary


  29. I lost a friend to ovarian cancer when she was only 20 years old. She was the most active person, always trying new and daring activities. I could not believe that she could lose her life to cancer and think of her everyday.

    Thank you for sharing your story with us. Good luck with your wedding plans.


  30. I want to thank you for sharing your story. I have never seen a story in any magazine dealing with ovarian cancer. I, too, lost my mother to Ovarian cancer in 1989 when she was 63 years old. Some of the things you mention were similar, although my mother never got to come home from the hospital to have hospice help. Another thing that struck me was that my mother was also from Ohio, but had moved to another state many years before the cancer struck. (Please don’t publish my name if possible. Thank you.)


  31. Thank you for bringing to light the insidious disease known as ovarian cancer; however, LHJ pretty much buried the article in the back of the November issue. I must ask why? Not enough is being done to publicize the symptoms of ovarian and other gynecologic cancers. Compared to breast cancer, a disproportionate number of women are dying from gynecologic cancers – and I question why these cancers are not publicized more. If we are to beat cancer through early detection, more publicity must be given to ALL gynecologic cancers, and women must be educated as to the symptoms. It is about time these cancers are brought to light as they are just as devastating and destructive to women’s lives as breast cancer.
    Helpful websites about gynecologic cancer are http://www.wcn.org and http://www.ovacome.org.


  32. Hi Amanda. Your story touched me doubly & I wanted to thank you for telling your story. I first lost my two parents in 2008 within 6 weeks of each other at ages 89 (Dad) & 87 (Mom), as an “only child”. Dad was the caretaker, so it was shocking when he died first after a brief weakness & overnight & one day in the hospital in-between my visits. My mother, who had been failing for awhile, lasted 6 more weeks. She was in a nursing home, supposedly for rehab. She waited for me to get there and then died in my arms 45 mins later. I was able to tell her I loved her and I knew she loved me. Then after I got back to work in another state (I was 4 1/2 months on family sick leave and vacation leave in their state), 5 months later, I was diagnosed with ovarian cancer. I was lucky though, I had BIG symptoms & was diagnosed at Stage IIC. I had my operation, more sick leave, & chemo. I pretty much sailed through the chemo with one hospitalization when my white blood cell count got too low. My CA-125 levels have been great one year & 4 months later. I hope I am done with it for good! I am also a successful breast cancer survivor of 10 years. I had to deal with the estate stuff too, although my parents were very proactive in planning ahead, which helped a lot. My friends in the state where they lived, where I spent summers as a kid, were wonderful in helping me through their funerals etc. I had mandatory retirement in my job & now get a pension. I have been spending 6 months/year in their home and 6 months/year in my home in the other state. I still have a lot of things left to do– donate their clothes, etc. It is sad sometimes but otherwise, life is good…. Take care.


  33. Hi Amanda – Thank you for your honest and touching story of caring for your mom. Articulating the different stages of your mother’s experience, and yours, and the realizations you share will help anyone acting as a caregiver to endure.

    I want to emphasize to every woman reading this that vague symptoms are important. I had surgical removal of a 15 cm ovarian tumor eleven years ago, when I was 40. I had sypmtoms for nearly a year before surgery, but except for fatigue, they are not the symptoms listed in the side-bar to your story in LHJ.

    All of my symptoms were obviously indicating pressure inside my abdomen, but they came on so slowly I simnply didn’t understand. I did NOT have abdominal pain, but I DID have lower back pain, particularly one sacroiliac ligament. I did NOT lose my apetite or have stomach problems or pain, but I DID crave lettuce salad and corn chips. I ate them every day. I did NOT have diarrhea or constipation, but I DID have a change in bowel movements. The feces were flattened and ribbon-like compared to normal. I had to urinate so frequently that I could not get a good night’s sleep. When you are sleep-deprived, you are not able to think clearly or process what is happening to you. I also had a general feeling of illness or more accurately, a lack of well-being, and soaked in a hot tub, sometimes more than once a day, trying to feel better.

    I hope anyone who reads this and recognizes these symptoms will immediately see a physician. It could save your life.


  34. Thank you Amanda for bringing your story to so many and sharing your experience with us. I don’t see too many articles written about Ovarian Cancer. As I read this, and cried, it brought so much of my own experiences with this cancer back and I realized, I am not alone.

    My Mom died in March, 2008 from Stage IV OC at the age of 61 after a 5 year battle. The things you described in taking care of your Mother are so similar to what my sister and I shared When she first got the diagnosis, I thought how could this happen to her. What do we do? How do we make this go away? Cancer of any kind was not something my family had dealt with. I asked questions. I researched. I talked to her doctors. But, mostly, I took my cue from her.

    My Mother had a determined spirit and fighting soul when it came to cancer. She was determined she would beat it and went about her normal activities as if cancer was just a cold. She expected her family to do the same. When it became apparent, that time was running out, my sister and I would switch off weekends driving the 4 hours to her house to help her and my step-father. Since we were that close in driving distance, the last 3 months, we went every weekend. My Mother was the rock in our family and held it together until the end. Two days before she passed, she told us all she loved us, she was proud of us, she would always be watching over us, her work was done here on earth, and she was ready to go home. She then slipped into a coma and peacefully passed away surrounded by family and friends.

    It is still painful losing her, but I know she is in a better place. Almost 3 years later, I still try to call her to tell her something. Once I realize I can’t physically talk to her, I still ask her for advice and think “What would Mom have done.” To help me get through the pain, I sit and write about her life. The good and the bad. And every year in November on her birthday, my sister and I get her a cake. Our families have cake and ice cream, tell her happy birthday, and tell stories about her. It has become our tribute to a wonderful woman who brought so much life to everything and everyone.


  35. Your story was touching and his close to home for me. In December 2008 my sister, who 55, just did not feel well with those symptoms that we all pass off as something else. We tell ourselves it’s menopause or depression and all kinds of other things. When she finally developed a blood clot in her leg and was hospitalized we were shocked to get hear a final diagnosis of ovarian cancer, stage IV. She has surgery on 1-5-09. At the hospital prior to her surgery she looked at me and asked “is there something you want to tell me?” I said no but at that point I was reasonably certain I would face the same diagnosis with my own set of symptoms I was passing off as something else. She could see in my face what I was still not ready to admit to myself. A wonderful nurse practitioner treating me for something else in January 2009 also asked the question “is there something you want to tell me?” and I did. She would not even let me drive home and gave me the choice of an ambulance or call my husband. At the end of January 2009 I was diagnoses with a small clot, and ovarian cancer. My surgery was 3-5-09, two months after my sisters. I was 53. My cancer is early stage, thanks to a great nurse practitioner and my sister. Genetic testing revealed we have “Lynch Syndrome” which makes our family prone to cancer. I have since had a section of colon removed and must remain vigilant with testing every year. My brother and nephew have also tested positive for Lynch.

    My sister and I wish you both good health and happiness. Thank you for sharing your experience.


  36. PS: Can I blame the spelling and grammatical errors on chemo brain, LOL! Sorry for not proof reading.


  37. I lost my mother to ovarian cancer about 9 years ago. It is hard to believe someone I loved so much is gone. Years later, if something unpleasant is happening, I yearn for my mother to be there because she could make sense of the chaos and calm me down instantly. “Well, you know Toni, she would begin and and all of my fears/apprehensions would disappear instantly. At one point my mother was in a nursing home (dictated by insurance) before we took her home with the help of Hospice. When I was a little girl, she loved to have me sing songs. One of her favorites was Too-Ra-Loo-Ra-Loo-Ra (an Irish lullaby) and I would sing on cue for her. Well, years later while in the nursing home, it began to thunder outside and she was uncharacteristically afraid. So, I begin to sing the Irish lullaby to her and at once she gave a sign of recognition and then a faint smile. It had been years since I had sung this song to her. Miss and love my mama still……


  38. Amanda,

    Thank you SO much for your story! I was diagnosed 6years ago at age 35 with ovarian cancer. My children were 5 and 7 at the time and I thank God each day that I am still here. Ovarian Cancer does not get the attention that it needs to find a cure! We have to tell our stories so that our message gets sent: trust your instincts! Be diligent in your check ups! Lets find a cure!
    God bless you and your sister


  39. Amanda, I was very moved by your story. I lost my Mom 5 years ago to colon cancer. I was her primary caregiver right up to the end. I spent the last week of her life, sleeping (not really) by her side, cuddling with her…as she did for my as a child. And while the experience of being with someone taking her final breath is so painful, it was something I know she would have done for me in a heartbeat. I’m blessed that I was able to give back to my Mom. We had always been close, but going through this ordeal from our Family Room, together… it’s just something I am so happy to have done (although for a long time I felt it wasn’t enough…I could have done more…should have…). Today, I am still sad that I don’t have my Mom by my side and there are many days I still talk to her and hear her voice in my head. The pain does heal, Amanda, but I still feel a bite in my heart each time I think of her and what she had to endure. Best wishes to you and your sister, and take solace in knowing you gave your Mom a beautiful gift.


  40. Amanda,

    I know what it took for you to write that story…I wrote a very similar one in 2006. It was like a roller coaster for me to read your article…instantly and vividly remembering so very many similar, if not identical, experiences with my own mother as she battled ovarian cancer. There will never, ever be a day where I don’t think of my mom or miss her. A piece of my heart died with her that cold day in December 2006, a piece that was hers and hers alone. I gave it to her to take with her, and it can never be replaced. I recently blogged about this experience and titled it “Four Bitter Truths to a Better Me” – just to deal with the guilt I felt over certain things during her experience. To read that you were not ashamed about feeling “relived” after her death really hit home with me, made me feel like maybe I wasn’t such a horrible person for having the same feeling. Anyway, I’d like to share my story I wrote with you (if you want) if you’d like to email me (I belive you get my address with this post). Thanks for sharing your story.


  41. Amanda – you and your sister are such brave young women! For you to tell this story while the emotions are still raw is a testimony to your maturity and courage.
    This article had me in tears for a couple of reasons. I lost my best friend, Janet, to stage Iv Ovarian Cancer at the age of 39 after a 10 year battle. She is my hero. She fought with incredible tenacity, no complaint, and a smile.
    I lost my mom in 3/2008 after a year and a half struggle to keep her healthy. I was one of the primary caregivers and so I can identify with the exhaustion and range of emotions that you go through.
    The experience of her illness has made me a different person – I’m more compassionate and now realize that life is indeed short.
    I miss my mom every single day but the pain does get better and manageable.
    Thank you for this article – congratulations on your upcoming wedding. She will be with you on your special day and always


  42. Amanda and Aubrey I have lost both my grandmas to Ovarian Cancer my dads mom passed January 2006 and My moms mom passed the day afetr my Birthday 4-21-10. My dads mom found out on a Sunday and passed that Thursday we didn’t have to watch her suffer more than we had but to loose her so fast was unbearable and so crazy what just happened? She was told she had O.C. and then BAM she was gone. My other grandma on the other hand found out about her O.C. from a biopsy which ironically was done January 26 a year after my first g ma passed I always find the things that they shared even weird things but we had to watch this g ma suffer and she was tough right up to the end around Easter is when she went downhill fast and it was almost like it was overnight. Reading your article I broke down and cried I remember and know the seeing things that weren’t real my g mas was string EVERYWHERE we laughed at times she had such a sense of humor but you have to find the lil things to smaile at or you’ll go insane. The night before she passed was my birthday and I remeber watching the clock as she began shutting down thinking how do I go on and celebrate birthdays if she passes wouldn’t that be wrong of me? I remeber my mom cousins and myself giving her the last bath she would have and how she opened her eyes and looked at me like a newborn in pain who couldn’t take care of herself or say STOP!!! That image of her stays in my head daily I feel like I should have been able to take her pain away but couldn’t. I only hope that others will read your story and feel like they too aren’t alone as I did thank you for writing your story for all of us to read and take the journey with you. My 10 year old daughter did a lemonade stand at a yardsale we had and donated her proceeds to O.A.K (ovaian cancer awareness of KY) maybe others can do the same we as women need to get the awareness out there and help STOP Ovarian Cancer. May God and your Mother be with you on your BIG day you know she will be with you take her and hold on to her many many years of happiness from me to you!!


  43. Amanda,

    Thanks for sharing your story. I too lost my mother three years ago to ovarian cancer. I can relate to those months leading up to her death. I remembered taking time off to take her to her chemo treatment only to be told that it is time to call hospice. The last two months leading to her death was so painful watching her losing all that blood. I had the opportunity to be there with her when she took her last breath. As your counselor told you and it is so true, you will always feel sad, but as time goes by,it will get less painful.
    All the best and keep the faith!


  44. I lost my dear friend to ovarian cancer a year ago at age 55. We met our freshman year of college and had remained friens for close to forty years. I read your story and felt as if you were talking about my friend– the many, many chemos, the swelling and bloating and pain. I have run the gamut of emotions- sadness, tears and anger that this dreadful disease is so hard to detect, and so difficult to cure. We always joked that we would be sitting on a beach, drinking margaritas when we were eighty! I am in awe of the way in which my friend faced her illness–with courage and faith that she would beat it, despite the odds. I know your process of healing will take time. You are getting married, and I am going to be a grandmother. Like you, a person who I loved dearly will not be here physically to share my joy–but I know she is smiling down from above. Let us hope that research will soon bring better ways to detect this awful cancer and better medicines to treat it.


  45. Amanda:
    Your story touched me so much. I lost my mother 5 1/2 years ago
    from endometrial cancer. She discovered her cancer from a routine pap smear and had a complete hysterectomy, with a course of radiation. However, her cancer returned and had metastasized 3 years later. At that time, she underwent chemotherapy. She had a few good months but I lost her 6 months after her diagnosis. I was living in a different city with my family and being an only child (and my father had died years before), my mother moved to where I was living, so my family could help her through her recovery. I attended every doctors appointment, chemo session and attended to her every need. And, I was with her when she passed away in a hospice.

    The past years have been the hardest of my life. My mother missed so many important events in the lives of her family and I think about her every day. Yes, it gets easier, but I wish every day that I could talk to her about my day, ask her for advice and see her enjoy her grandchildren’s accomplishments.


  46. Amanda:

    I came home from the funeral of my former sister in law, who I have known since she was 14, to see my LHJ in my mailbox and your heartfelt story. My sister in law battled ovarian cancer (stage 4 at diagnosis) for just over 12 months. She succumbed on Oct 1, 2010. Her courage was remarkable. She was 53 and had so much life in front of her.

    I tell women every day (even those who don’t ask) to never accept abdominal symptoms as IBS and to always push the doctors to look further and get a CA 125. I hope at least 1 woman has listened and saved herself.

    What bothers me most is that so many children are losing their grandmothers to this disease. My sister in law was an Army wife her whole life and always had extra kids and then grandkids around her, as so many Army families are away from their own families. She always stepped in and became Mom in her early years and Grandma later in life to the younger Army wives.

    Keep spreading the word on this deadly disease, and may each of us strive to save just 1 woman by talking about this disease.


  47. Thank you again everyone for sharing your stories and for your words of encouragement. They truly mean a lot. I think one of the most striking–and sad–things about all of your responses is how truly NOT unique my story is. It’s just heartbreaking how often this happens, and how many women and families have to go through a similar struggle.

    I truly hope that even one more woman will go to the doctor earlier with symptoms!!


  48. Amanda:
    As I read these stories my mind wonders back to 1979. I was 23, my mom 62 when she died of ovarian cancer. We as a family were fortunate enough to bring my mom to my brother’s home(he is a physician) to finish her life. She was first diagnosed in 1977. The docs did all the normal surgery, hysterectomy then the dreaded “bag”, chemo. The last 6wks she was brought home where she was given a morphine drip. She did not like it, said she wanted to be alert. In time that did not matter as the pain became too much to bear. There were six kids in our family, so there was some rotation of care. Ultimately those of us that lived too far to help, moved in with my brother for the last six weeks. WOW what a crazy bunch we were! My mom was the glue in our family, so this was very trying for all. Some of us brought our children since there was no other way to be with her. My mom was not real happy to see us at first. She wanted to know why we were all hovering. Emotions were plastered to the walls, in the furniture and blowing out the air vents.
    We did a good job of keeping the kids in line. She would visit with them some, but this was tiring for her.
    I am thankful I was allowed to be there. Yes, I struggled with the waiting. Felt guilty for any desire for this to end. As I watched her wither away into nothing with a belly the size of a full term pregnant woman, my faith ended. She went into a coma, lived 2 more weeks until we took her off all life support.
    I have her in my heart and think of her every day. Holidays are tough, and I still can’t make a turkey like her!
    I don’t believe, just as others have stated, that the medical community has given this disease enough publicity. Some docs have told me not to worry, it probably isn’t hereditary, and others seem concerned. Which is it? I don’t worry so much for my life as I do my daughters.
    Your story is wonderful. Someone like you may make the difference for all of us out here. I wish you the best!
    Thank you.


  49. What a small world we live in. Being from Tuscarawas County, Ohio I was amazed to read an article in a national magazine that featured someone I knew. Amanda, I worked for the investment firm that handled your Mom’s investments, including the college funds for you and your sister. I had many pleasant conversations with your Mom over the years. Another amazing coincidence is that I walked the ovarian cancer journey with my mother in law 6 years ago this month and her journey came to an end in almost the exact way you described in your story. I am wondering if we had the same hospice nurse, as one day our nurse took me aside and told me we were “being given a gift” to be able to spend my mother-in-law’s last days closely with her. At the time her comment angered me – I wondered to myself “what kind of a gift is this? I would rather not have this gift” But after she passed, I did come to realize that the days and nights we (my husband, his brother & wife and me) spent with her over a 10-day period were indeed a special (but difficult) gift. Nothing was left unsaid and our pain at having to tell her “it’s OK to go” was lessened by knowing that she was no longer struggling or in pain.
    Thank you for sharing your beautiful story and know that for certain, your Mom is looking down on you & your sister with incredible pride!


  50. Hi Amanda, Wow! The similarities between your Mom’s story and my Mom’s are almost eerie.
    I, too, have just one sister, and her name is Natalie. Our dear, wonderful mother lost her battle with cancer in July of 1993. She was diagnosed with ovarian cancer in 1984 – early stage, chemo, etc., but in 1986, developed a tumor on the inside of her abdominal wall – a type of sarcoma – which they say was not (who really knows) related to the ovarian.
    She fought for many years, but it finally got the best of her in 1991 – many surgeries, removal of her scapula, ng tubes, second looks, etc., etc.
    The fluid retention was hideous – they had to insert a drain directly into her abdomen and we had to turn the spigot daily and drain it – one full man’s plastic urinal full – no more – the electrolytes would go off kilter.
    I relive the last three months of her life every spring – I had a two year old at the time and my sister was pregnant with her daughter. My sister gave birth two weeks before my Mom died – they were in the same hospital. My Mother never got to hold her granddaughter.
    Ethan, my son, and I would get up at 5:00 and drive to her home-an hour away. My son would stay with my grandmother while I drove back to Pittsburgh with my mom for her daily radiation (she actually was getting it twice a day for a week or so to try and keep the beast from coming out of her belly button). Then I would drive back to her house and pick up my son. We did this three days a week and her friends picked up the other two. I cut the grass, took care of her bills, shopping, care, doctor visits, etc. (my father passed away four years prior).
    We also had to clear her house and sell it, but we were only an hour away – not a plane ride. One thing that I did that I am still happy that I did was take pictures of every room of the house – it too was my childhood home. Also, I wish I had taken more things – I didn’t think I had enough room, but now I think about some of the items that I wish I had. Still, 17 years later, I still have moments – I hate to go into dressing rooms at stores because I will hear mothers and daughters in nearby rooms talking and laughing like my Mom and I used to do, and it makes me sad.
    I miss my Mom (and Dad) every day of my life and wish they were here to see my sons and niece.
    My heart goes out to you and your sister and I so appreciate you writing your wonderful article – I had little tears rolling down my face while reading it at the tire shop.
    All I know is that I, and you, were truly blessed to have the wonderful mother’s that God gave us – it would never have been long enough, but I would not trade the short time I had with her in my life for anything.
    God Bless.


  51. Amanda,

    Your story brought back so many memories-I lost my Mom to ovarian cancer in 1998. She was 54. She was diagnosed at age 44 (the same age I am now) 2 months after I got married. She fought hard for 10 years. I was laughing reading about the colostomy-she had one after the 3rd reoccurance and my sister and I were responsible for changing her bag. I really sucked at it! Luckily my sister and I were responsible for her care the last few months of her life.It was truly an honor. She was sent home thinking she would not last a month-she survived for 5 more. We were able to hash through any unresolved issues, laugh, cry and she planned her funeral down to the last detail-It was always her way or the highway, even in death.

    I still think about her every day-The pain lessens as the years go on but it never goes away. I still have dreams that she is alive and it is so painful to awaken and realize she is still gone. The bond between mothers and daughters is a very strong and special one. We made a tape of pictures set to music to be played at her funeral-whenever I need to feel close to her I bring it out and laugh and cry at the same time.

    Thank you for sharing your story-The strength of the human spirit when faced with horrific events is truly amazing. You will be an amazing mother because of the example of yours!


  52. Hello Amanda, sorry for your loss as I know how it is to lose a mom and a friend. I lost my mom to melanoma cancer 9 years ago New Years Eve. I know that the article stated that if you had lost a loved one to ovarian cancer. Your article brought back a lot of memories of my dear mom. She sounded a lot like your mom. Not having me worry and telling me that I will be able to on without her. I think about her everyday. There is so much that I would like to tell her. We loved to shop and go out to eat. I am an only child and fortunately I did have my dad. He passed away May 12, 2009. I have had a hard time getting past this. I would lay next to my mom and we would talk about things and just dance around what was really going on. My mom told me that she could never tell me goodbye and we never said that. A couple of days before she went into a coma. She told me that she was looking out her window and she saw a bunch of people waving to her and when she looked again she saw herself waving to her. Her telling me that brought a sense of comfort that I knew that she would be okay. When she sank deeply in a coma I told her that it would be okay and that I would take care of dad. She breathed deeply and I know that she knew that I was there and what I was saying. She passed later that night. My dad was laying in bed with her. Hospice took care of my mom too they are definetly angels sent from heaven. So take care Amanda and I will be watching for more of your articles of your emotional journey


  53. Amanda,
    As I am skimming through my LHJ, your story caught my attention. I just caught glimpses of words and wow….’This is my mother’s story’, I thought. The similarities are undisputable. And then I saw ‘Dover, Ohio’; I’m from New Philadelphia, Ohio. I lost my mother September, 2009. My mother was a cancer survivor 4 times. Her first journey began in 1984 with breast cancer. In 2000, she was diagnosed with thyroid cancer. Then, again in 2004 another journey with breast cancer. Then, February 2009 she was diagnosed with Stage IV Ovarian Cancer. When we spoke with the doctors after surgery, they said they were only able to take her right ovary and her intire abdominal and left ovary was full of cancer. The doctor’s said she might have 6 months, if we were lucky. Mom began chemo in March, 2009. God blessed my mom with a great-grandchild in April, 2009. I was mom’s primarycare-taker. My mother NEVER complained or questioned why God gave her this journey. Only that if she had to do it all over again she would because her God suffered far more that she had. Wow, to listen to your mother say those words! All I can ask for is to have half the faith she had. Eventually Hospice came in and I remember my last words with mom. She was in the nursing home and I had visited at lunch time (like everyday). She was sleeping but it didn’t feel right to me. I ‘tickled’ her foot and she was so droggy from the morphine. She said ‘hi’ with a smile. I told her I wasn’t going to stay long because she was sleeping. I told her ‘I love you’….she had dozed back out already. I tickled her foot again and said ‘I love you’….she smiled and said ‘I love you too!’. I left to go back to work and at 5:00 I headed right back to the nursing home (as usual). As soon as I pulled into the parking lot my cell phone rang. It was my sister calling to tell me that mom had just past.
    There isn’t one day that passes that I don’t think of my mother. But knowing one day I will see her again in Heaven makes it a little easier. I will keep you and your family in my prayers. Thank you so much for sharing your story. It helps other people heal!


  54. Thank you so much for publishing this story. Similarly to others, I understand what you are going through. I lost my MoM to ovarian cancer on May 31, 2008. She was 65. She went into the hospital 2 weeks before, and didn’t know she was sick, she just didn’t feel “right”. Doctors sent her to the ER, when they couldn’t figure out what was going on. ER decided to admit her when they couldn’t figure it out. She was then diagnosed with Stage IV ovarian cancer, surgery was attempted, but not effective. She had a chest tube draining the fluid collecting around her lungs, which was also in-effective. One week after diagnosis she was gone. The longest, and shortest 2 weeks of my life.

    I think of my MoM every day, and most times I can make it through without crying. Certain times, however, including your story made me cry as I knew exactly what you went and are going through. Time has made our wounds less raw, but nonetheless still there.

    My sister and I now see things that we do, and say – oh that was totally MoM. And we smile that she lives on in us.

    Take care.


  55. I started to read your story because I was one of the primary caregivers for my niece, Tina, who died on July 6, 2009 at the age of 29 from ovarian cancer. I also grew up in Dover, Ohio and my niece lived in New Phila. Reading your journey and picturing you there so near to me and your mom and Tina struggling with the same battle at the same time just broke my heart. The nights I spent with Tina holding her and caring for her and feeling so alone, felt like we were the only ones who knew how this felt. Then Iread this and know many of those nights a few miles away your mom was fighting too. So powerful! I live 2 hours away now and those car trips home or the web cam visits and only being able to talk via phone added their own stress. Making the decision at the end of the school year (I am a high school counselor) to leave my husband and two teen boys to be able to care for Tina for as long as I needed was so hard. They came to visit me while I took care of Tina. My husband kissed me goodbye as I packed my suitcase and I said I’d be home after Tina went home to heaven. He held me and said he’d take care of things at our home and he’d be there when I needed him. Looking back on that now… I think, “wow! I have such an amazing husband.” Having someone die in your arms is something that changes who you are forever. I wonder if we were ever standing in line at a store at the same time and not even realize the similar journeys we were travelling.


  56. I had barely started to read your courageous story when my tears started – my mom fell ill this past May and died a mere three WEEKS later from Ovarian Cancer. She too, probably ignored some of the symptoms your mom displayed in her own illness. The loss of a powerful, vivacious, energetic woman has been devastating to our family. It is just too much to comprehend some days and the aftermath has been just as painful. My parents has just sold my childhood home of 40+ years and were ready to begin a new chapter of travel and retirement – to have to sort through every piece of paper and treasure that was in their home has been painful and slow. I know that my mom made us strong and that we will get through this, together, as a family.


  57. Hello Amanda,
    I want to thank you for your story. I just gave it to my husband to read and told him this is exactly what I went through during the lost of my mother to liver cancer. I think he didn’t really understand what I was going through until reading the article. My mom passed July 6, 2010. She was diagnosed in Feb. after waiting to see her own Dr. because she was taking care of her mom, who passed away at 95. What was the hardest thing for me to deal with is that fact that my mom had helped take of my sister,who 2 yrs before was going through stage 3 breast cancer. Then last yr I started chemo and radiation for stage 1 breast cancer. She helped me so much through it,that when she was diagnosed I only wanted to help her. But she was stage 4 and nothing could be done to stop it. That is one of the hardest things for me to live with at this time, that I couldn’t help her, like she did for me and my sister. We all were with her when she passed and that memeory I live with everyday. I can’t get the feeling of holding her hand and watching her take her last breaths out of my head. I hope soon the good thoughts I have can take over my last ones I have of her. Thank you for your article, it made be cry and at the sametime have the hope of being able to move on. I have only good blessings and wishes for you and your sister for your futures. God Bless.


  58. After reading your Mother’s story, I felt the need to share my experience. I was diagnosed with very early stage ovarian cancer in 2000 and underwent a radical hysterectomy, like your mother. As for follow-up treatment, it was decided that I should have abdominal CT’s several times a year for several years along with doctor’s visits. Fortunately, nothing serious appeared. Then, after a routine colonoscopy in 2008, a small area of very early stage cancer was discovered and I underwent surgery to remove that section of the colon with reconnection of the bowel. Things went well for a few days, but the internal connection burst and I had an emergency surgery which resulted in a colostomy, like your mother. An infection in my incision occured, like your mother, resulted in another hospitalization and the same “barbaric” sterile gauze treatment, which my mother did for me. Luckily, I was able to have the colostomy reversed four months later and have recovered with few complications. I only wish your mother had been given more time with you and your sister.


  59. Hi Amanda,
    Both you and your sister are amazing people. Wow, your mom certainly did a great job of raising 2 beautiful and caring young girls! My great grandmother and grandmother died from Ovarian Cancer and my mother had a hyterectomy at age 47 due to high levels of CA125. With a family history like that, I’m going to educate myself so that my sister and I have a fair shot at beating this, in the event it finds us! God works in mysterious ways but he has blessed you with an important calling. And that is to help others. You are doing a spectacular job and your mom would be so proud. Carry on, as gracefully as you have done. Best of luck.


  60. Thank you so much for sharing your story, it helped me realize that there’s other people who went through the same thing I did when caring for my mother. She passed away in June 2008 after a long 6 year battle with stage IV skin cancer (melanoma), but the 6 months were very similar to yours. I was only 26 when I lost my mom, and at times I felt all alone and felt as though no one else could possibly know what I was going through during those rough times. I feel as though taking care of my mom was the least I could do for her after all the years she raised me. It takes a lot of guts to relive those memories and write them for everyone to see, and for that I commend you.


  61. Years ago when living in Mississippi, my friend, Linda, and I formed a prayer group. Little did we know that our first major area of concern would be Linda as she was diagnosed with advanced ovarian cancer shortly after the group began meeting. She fought the battle for 2 years with her death leaving behind her husband and two teenaged children. She was a bright light for all who knew her, and the compassion and care given to her was an experience I shall never forget.Linda’s living and dying changed my life forever.


  62. Our family lost Gerry Sauers over six years ago after her battle with clear cell carcinoma ovarian cancer. She was approximately the age of Janice Alexander at the time of her diagnosis, yet she had five years between diagnosis and death. Mom’s is a not-so-unique story, with two daughters – my sister and I – who were in our 20s at the time of the hysterectomy and diagnosis. During the years before her death, Mom organized a lovely wedding for my sister and drove until the month we had to say goodbye. Although letting her go was hard, she is with God and has found lasting, true peace which never would be found while battling cancer and facing the devastation of the dreaded sickness.

    Since her death, I have completed a master of public health and have a mission to find a cure to end cancer. My special project during my master’s program was on phytochemicals, and I entitled my paper Developing Vaccines for Chronic Disease Prevention with Phytochemicals.

    Not only was missing her final breath and completing my paper on antioxidants/phytochemicals difficult, but also I never will get to share my husband or any children with her. Mom did survive for my sister’s wedding and threw herself it into generously, yet I had to organize our wedding without her. I’m sure Mark and I would have enjoyed wedding day more without her, yet letting Mom rest in peace and having my own peace depends upon letting God have control over our circumstances.

    I truly am sorry for your loss and trust God will help us all find a cure. Amanda, whoever chose the photo for the magazine picture made a good choice. Your mom’s teal is line with the color for ovarian cancer awareness. Have you thought of memorializing your mother somehow during your wedding? We had a memorial candle.


  63. Amanda,
    Thank you for sharing your story! I hope others will read this article and learn from it. My Mom died in 1983 at the age of 56. She had symptoms for a few years and they found ovarian cancer when she had surgery to remove her gallbladder. Mom fought hard and tried everything from chemo, radiation, diet. Nothing worked and she died after less than 2 years. After all these years I still miss her every day but it does get a little easier. I am so sorry for your loss.


  64. Amanda,
    Thank you for sharing your story and keeping this horrible cancer in the public’s eye. I lost my mom to Ovarian Cancer back in 1988 when I was 22. My mom was only 42 years young when she died (her battle lasted 14 months). I not only lost my mom, but my best friend as well. Like you, I had to plan a wedding without her there, so I know the sadness of having to deal with the “missing mother of the bride” questions/comments. There isn’t a day that goes by that I don’t think about and miss her. The hardest thing for me is knowing that my 4 kids will never know the wonderful woman that was their grandma. I pray for all of us motherless daughters that someday soon there will be an early detection test and cure for this horrible disease.Thank you again for sharing your story, it sounds like you have touched the lives of many of us who thought we were alone in our journey through the Ovarian Cancer battle.


  65. Amanda: I cannot tell you how very much I appreciate your article, how much I am grateful to have been able to read it. I have just gone through almost the same senario, only it was my younger sister. It has been such a stressful time for me and for a younger sister (Dawn) that I thought at one point, that we would never survive it. Diana, was diagnosed with Ovarian Cancer in 2004, went through chemo (in a trial) and could have stopped after I believe it was 12 treatments, but she had promised that she would do the 18 so she did, and then lost her hair. She was so very brave. She went into remission. In 2007, her husband was diagnosed (in February) he was gone by November.I never saw anyone suffer so much. They were the perfect pair, and so in love. Never were able to have children, but we always said that everyone else’s children were their’s. Two months later, her cancer returned. She fought a good battle, just like your mom but by the end of the summer, after changing chemo more than once, we knew it was a losing battle. Diana however, kept battling kept saying she was going to beat this terrible thing. She also had her belly drained more than once, along with her lungs. To no avail, but it did make her more comfortable. By Christmas, she was in the hospital and was able to come home. However, in January it was necessary that we rush her again from the Doctors Office and from there,after listening to the wonderful staff at the hospital, I knew I had to convince her that it was time to call in Hospice. I think that is the hardest thing I will ever have to do in my life. I loved her so very much, how could I let her go? But I knew this was the right thing,for her, she wanted so very much to be at home, and so did we. My sister Dawn, who lives in Florida, came to stay and along with other family members, we took care of her. I would do it all again, just so that she was comfortable and that she knew she was loved by many. We took care of her, played games with her, and prayed with her, which was very important to her. God was her saviour. She was so very afraid, and kept saying that she wasn’t ready. Made me promise that when her time came that I was to be sure that she was gone because she was to be cremated. When that time came, it was the first thing I said to the staff from Hospice. Please make sure she is really gone, she made me promise.
    It has been very difficult for me and for Dawn, who was like Diana’s baby. She practically raised her, so for her it is like losing her mother and her best friend at the same time.
    Going through her things was almost sacriligious. We hated doing it, and her home, a log home that they built and did not have a chance to even live in, is like giving away part of her.
    I know we will get through this, they say it takes a year after a death to start healing. I don’t know about that, it took me 5 years to get over the death of my dog, before I could talk about her without crying. Diana I love you, but I hope it doesn’t take that long, I feel like I am all cried out now and yet the tears keep coming.


  66. Amanda…Thank you so much for sharing your story. My original diagnoisis of ovarian cancer was in 2003 at stage 3-c also. I did nine months of chemo after the debulking surgery. I had almost six years cancer free when it returned last year unfortunately. My sister was such an amazing support to me the first time but unfortunately wasn’t able to be here for my second round as she was caring for our mother who suffered from dementia. She died in May a month after I finished my chemo this time. It has been rough dealing with all of this in the last year. I know you can relate to the feeling that I just want things to settle back to normal again. I so appreciate your sharing your story as it was very moving. I have posted it to my facebook wall so my friends can also know the nature of this deadly disease. Bless you!


  67. Amanda… you and your sister are amazing. I lost my mom Aug 2004 to pancreatic cancer. I was living in CA and she in NJ. She went in the hospital in May and passed in Aug. I went home in July for 10 days and the week before she passed was when the doctors told us that she had stage 4 pancreatic cancer. It could be 2 days, 2 wks or 2 mos. She passed a week later. She was in hospice for 5 days. All 6 of her children were there with her while she took her final breath. Thanks for sharing your story! I miss my mom every single day. I think of her every single day. There’s days I just wish I can pick up the phone and talk to her. Best of luck with your wedding and will continue to follow you here.


  68. I have never written to a magazine regarding any topic but I felt compelled with your story Amanda. I cried from the 1st paragraph. I have not lived the experience you have but I have a mother and it would be devastating to loose her and I know it will happen one day. I also cried because my mother-in-law died in Jan. 2009 also of cancer(not ovarian but lung, bone and possible kidney cancer) and when it was diagnosed, she only lived 24 days. It was quick and it was a shock and still makes me very sad when I think about her and the effect it has had on my husband and on my father-in-law. She also spent her final days with Hospice at home. You are too young to have lost your mother but you are a wonderful daughter. Just know that she knows that and you will always have her in your heart. Hugs to you and your sister.


  69. Amanda – I can so relate to all that you have been through. My Mom also passed from ovarian cancer back in 1982, exactly one month after my Dad passed from prostate cancer. My husband & I had 2 little girls and it was so difficult trying to explain to a 7 year old and a 3 year old what happened to Grandma & Grandpa while at the same time trying to deal with my own grief. While reading your article I cried and yes, even smiled, as my sister and I traveled the same roads you & your sister did. The pain has certainly lessened over these past 28 years and I no longer reach for the phone to call Mom, but I still miss them both so much. The memories of my parents are as fresh as if I’ve just seen them and we keep those memories alive for our daughers, who are now married with children of their own. Our granddaughters know that their great-grandparents are with God and helping to watch over them. You will never forget your Mom and know that always you will carry her in your heart and mind…nothing can change that. May I wish you a wonderful and happy marriage and a future that is bright. God bless you.


  70. Hi Amanda:

    I was only 40 when I was diagnosed with ovarian cancer. I had had some pelvic pain and a transvaginal ultrasound found an “ovarian cyst.” My doctor put me on birth control pills to “shrink the cyst,” but after a month or so on them, I asked that the “cyst” be removed as it was becoming more painful. During that surgery is when they found it was ovarian cancer. I also had cancer in some endometriosis, and there was some discussion as to whether I had 2 cancers or metastesis. After surgery, I had the standard rounds of chemo and then also 5 weeks or radiation therapy because of the possible endometrial cancer. I am now going to be 55 on November 1 and have been cancer-free these years. I am very thankful to be alive and appreciate everyday I am alive. I have know others who lost their battle with this dreaded disease.

    I lost my mother less than a year and a half ago, and even though it was not from cancer, it was still a very painful and agonizing death. I’m thankful I was able to take off work the last month of her life to be with her, but it is still painful to think about. I miss her everyday. Thank you for sharing your story.


  71. Amanda,
    I was really touched by your story, so much so that I cried at the end. My mother died of lung cancer that had pretty much spread all over her body and it was 17 years ago that she passed. I am now in my late 50′s and I can still think of something that I would love to pick up the phone and tell her everyday.
    Your grief will lessen over time, but it will never go away and you don’t want it to. Cherish the memories and take comfort in the fact that you had the opportunity to spend time with her until the end. Thanks for sharing


  72. Amanda,
    When I read your story of your experience with your Mom..and when you offered to allow us to write our story …I really felt I needed to do so.Like you, I am also the oldest daughter but I am fortunate to have 4 sisters.
    My sisters and I have also participated in a research project of the Canadian Ovarian Cancer Foundation. It was a difficult thing to do and we shed many tears but it was also very healing.

    As I read ( and cried ) about your experience I was reliving the experience of 2 years ago on Mother’s Day, when we lost our beloved Mom to ovarian cancer too.

    There are differences, of course, as our Mom was older and she never had chemo or surgery as at the time of diagnosis her disease was too advanced. However, that being said, her journey was similar, although shorter. We only had 6 weeks with her from her diagnosis to her death.

    She was always so strong, independent and positive and such a wonderful mother to her 7 children and all their many and varied friends.
    Her symptoms were so vague, and she never complained.
    In hindsight we wonder how we couldn’t have seen her deterioration or noticed some of the other symptoms.
    I can only feel it is because she was so strong, independent, and private and that the symptoms of ovarian cancer are so vague…that her disease was end stage by the time she was diagnosed.
    I remember helping her get dressed to go to the Dr before her initial admission to hospital when she was diagnosed and not being able to button up her pants due to ascites..and being shocked, especially that as a nurse, I never clued in!

    She hated being in the hospital despite only being an in-patient for 3 days…but since she lived alone in a 2 level condo she could not return home.
    So…she came to my home and my sisters came from out of town and moved in to help me care for her at home. My youngest sister took a leave from work and we managed , along with a wonderful Palliative Care team, to keep her here, where she wanted to be, until the end of her life.

    We did all the crazy fun, sad and difficult things you describe – lying on the bed with her- her friends and grandchildren visiting, especially my daughter, her oldest grandchild… bringing Mom’s youngest great-grandson (my Dad’s namesake) to visit on her bed…telling stories – laughing and crying. Being able to tell her how much we loved her and what a wonderful mother she had been and how we treasured her.
    She was always a very gracious woman but in her last days it was even more evident as she frequently told us how much she loved us and how proud she was of all of us..how thankful she was to be able to be home and thanked us frequently for taking care of her. She always said she felt so lucky – but we were the lucky ones ….to have the opportunity to care for her as she had done for us and for being allowed the time to tell her all the things that often go unsaid in life.
    She died at my home with all of her daughters at her side. She left a beautiful note putting all of her thoughts and love and pride in writing that I read and copied for all her children and grandchildren after her funeral.
    Like you, I miss my Mom every day and it is those things that sneak up on you, as you have described – like seeing her name, or being reminded of something you would like to tell her that bring the ” insta-tears”.
    I thank you for sharing your story to bring ovarian cancer to the public awareness and hope that it may save other daughters from losing their Moms to this sneaky killer.


  73. Amanda~As I was reading your story, I found myself standing on the outside looking in on the time when my mom died of ovarian cancer. Eight years ago I lived it, along with my 10 brothers and sisters. The diagnosis, the treatment, surgery, chemo, and then just living with it and waiting for the finality of this awful creature to do what it does best,take the life of a beautiful woman. We sisters did the jewelry thing on my 39th birthday. How I cherished each
    moment,each word she spoke, each memory of all her jewelry, but also had such sadness for the life that we would be without. In the end, the only way I can descibe the death of my mom is this: I just feel like someone took the sugar out of my cupboard. The ingerdient that makes everything sweet is gone. Ovarian cancer is silent and unforgiving. I am sorry for your loss.


  74. Amanda, Thank you for sharing your story…
    My daughters Auntie lost her life at the age of 23
    years to OC stage4 cancer, she was very sweet, caring and giving to those around her, she had been having fatigue and swelling in her belly but she thought she may be pregnant, she had just gotten engaged to a wonderful man recently. Her Mother was a RN and happend to be coming for a visit and saw her daughter and decided she should be checked out right away they went to the ER and found she had OC and that it had already spread to her liver, abdominal cavity and lungs I belive they gave her 6 months to live and it was close to that when she passed…she too went through the surgery’s and the draining of the fluid and a morphine drip to control the pain…we all were able to spend vacation time with her at her parents vacation home in Montana
    my girs were very little 8 months and 1 1/2 years
    old but this was very special and I am glad we were able to…When she passed away her fiance built a wooden cross in her honor and hiked up to the highest mountain overlooking the home in Montana and he placed it in the ground in her memory…her Mom & Dad can see it as it over looks their home there…
    I too have lost my Mother from complications of a stroke and diabetes in 2006 I miss her every day
    but I know she is a part of me in evrything I do and I take comfort in this..God Bless


  75. Amanda:
    I am crying as I write this. Like other posters, I lost my younger sister whose symptoms were not taken seriously though she reported them. Now my dear friend’s mother has just been diagnosed with Stage III– the fluid built up was the sign. I totally recognized so much of what your wrote– being far away and flying in as much as possible. We double guessed ourselves about going to hospice. The pain and the morphine. The preciousness of the longest yet shortest six weeks of the hospice duration. The post mortem taking care of my sister’s possessions. It is so sad and will be so forever. What keeps me going is something one of my brother’s said at a service for Rebeca: we thought we were taking care of her in hospice, but really she was taking care of us. She brought us all together for a shared time of reflection and farewell. Although I had to fly in and live far away, I am grateful that I had the luxury of being able to go as often as I did. I think I am rambling but your article was so right to the point! Thanks.


  76. Amanda, just when I was looking for info on Ovarian Cancer, I came across your story in LHJ. I NEVER read LHJ–just because it’s never in front of me–but that issue was in front of me yesterday in my doctor’s waiting room. I’m looking for info and stories because a friend/colleague was diagnosed just two weeks ago. I’d never given OC much thought until this month–ironically, breast cancer awareness month. I seem to have missed OC awareness month, but OC scares me 10 times more than BC, even though my mother had BC and died seven years later after the treatments wore her down (this was back in the 70′s). I’ll be listening to/taking note of any changes in my body from this day forward. Thank you–it cannot be repeated enough here–for sharing.


  77. I couldn’t stop crying while reading your story. I read it 3 days before my Mom was going to have her colon reattached. But like your mother , they found the cancer had come back. She has ovarian cancer stage 3. The hardest part is feeling helpless to do anything. She has face this with such courage and grace. When her hair starting falling out from the chemo , she shaved her head. This is a woman that always had her hair perfect. She didn’t cover it with wigs or scarves, she wore as a badge of honor. I’m scared , angry and feeling lost , then I feel bad , because shes the one who has to go thru this.. By the way she found out she had cancer because her belly swelled up looking like she was nine months pregant in a week. Thank you for sharing your story and maybe someone will see a symptom that was listed and get tested. Sometimes good things happen from bad things, hopefully this is one of those times…


  78. As I read through your story I realize how lucky I am. There but for the grace of God go I. In August, 2007 at the age of 50 I was diagnosed with stage IIA ovarian cancer. After reading the other e-mails I realize that most of the women have died because of this silent killer. The symptoms your mother had were the same I was experiencing and like her I attributed them to something else.

    Too many complications not relating to the cancer prevented me from completing chemotherapy. I was sick with stalph infections, medications and wounds that would not heal. In May, 2008 my oncologist, after months of trying to get my body to accept the treatments, told me I was not a candidate for chemo. I was devastated, thinking that chemo was the only way it would not come back. I was sure that the cancer would return but so far I am still cancer free. I don’t know how I have come this far with basically no treatment except for the initial surgery and one complete round of chemo.

    You are an amazing daughter. I know how hard it is for a mother to have to see her children see her in that condition. I have two sons, one who was away at college and one who lived at home, and they would accompany me to my doctor appointments when my husband couldn’t. I didn’t want my sons to see me like that but I had no choice and because of them I had to put myself in a positive frame of mind. I know that your mother was very proud of you and your sister as I am of my sons. Thank you for telling your story. Ovarian cancer needs to be put out there so everyone can be more aware.


  79. Amanda,

    I am so sorry for you and your sister. I was 33 when I was diagnosed with ovarian cancer, my daughter was only 6 years old. It was very scarry, I had symptoms like your mother did, but I could not get a doctor to listen to me. I knew something was wrong, and the doctors thought it was just in my head. I was persistent and my husband finally stepped in and told the doctor that they had to do something. So after testing and sending me to a gyno they did surgery ( a total hysterectomy) and 6 months of chemo I am cancer free for 14 years now. My daughter is in her 3rd year of college to be a physician assistant. I am sure she is going to work with cancer patients and spread the word about ovarian cancer. We need more research done on the silent killer. Thanks for your story.


  80. Hi Amanda. Just read your story while on an overnight trip. I was with my aunt, my mom’s sister, who read it too, and we both just cried. My mom was 72 and diagnosed on May 18, 2008, and she passed away on March 16 of this year (22 months after diagnosis). I miss her so much and still want to pick up the phone and call her. She was a fighter and would have done anything the doctors told her if it would have given her more time. There are so many similarites in your story and mine. I know your story will raise the awareness of this horrible disease. I have been posting messages with a young girl on msn.com who had questions about ovarian cancer. About a year ago I was looking for information and came upon her message and we have kept in contact since, in addition to another lady who’s mom was recently diagnosed with ovarian cancer. It was later determed that it wasn’t ovarian cancer for my young friend’s mother, but we have kept in contact this past year and I’m sad to say, her mother is not doing well and at this point they are just waiting. It as definitely helped me to tell my story and I hope it has helped them. I wish I would have had someone to talk to and to know what to expect at times, like the fluid, the swelling. I never knew her name, just a screen name, and she finally told me her name is Amy.

    I hope and pray that one day when my daughters are older, there is finally a cure for this horrible disease. God bless.


  81. I just wanted to thank you for sharing your story with us. It really touched home with me. Although our stories are a little different, in the end we both lost mothers. In my case, I also literally lost my best friend. My mom was diagnosed with ovarian stage lV cancer on July 25th of this year. She passed on August 4th, at her home, with loved ones by her side. My mom went in for stomach pain. We though she had a cyst on her ovary. When we were told the diagnosis, I ran around my home screaming at the top of my lungs. She had been to countless gyn visits, testing etc…and he missed this…How does that happen, in this day and age?
    Unlike your mom, mine never had to endure chemo, surgeries and countless hospital visits. For that I am thankful. Thankful also to you, for sharing what your mom had to go through. I am thankful in a way that mine never had to. She went quickly, holding my hand. We brought her home (with the help from home hospice) and we had a full 12 hours with my mom in lucidity. She told us how much she loved us. She joked with us (Which we have always done)She was just herself. One last day that felt somewhat “normal” if that’s even the word.
    I just wanted to thank you. I know how hard it is for me to even talk about my mom. For you to write this article and share with the world is amazing to me. I am sure I’m not the only one you have helped! I wish you much strength in your upcoming wedding. Just remember that your mom will be by your side, every step of the way.


  82. amanda, that was the most amazing story. i used to work for hospice and you truly gave your mother a wonderful gift. if only everyone had such wonderful children. i know you must miss her but it must ease your pain knowing how you helped her die with dignity and love. best wishes.


  83. I am so sorry for the loss of your mother. I am a 4 year ovarian cancer survivor. I was lucky to be diagnosed with a stage 2 at age 37. This cancer is so hard to catch early I am so glad mine was caught as early as it was. We need more research to stop this deadly cancer. Your story made me think back to everything I went thru and I’m very grateful to be alive.


  84. Amanda, thank you for your beautifully written story. As I write this, I am in Texas staying with my mom who was diagnosed with 3C Ovarian Cancer in August. She had just returned from helping me in Ohio while I recovered from shoulder surgery. At times I feel incredibly guilty because SHE was taking care of ME while the cancer was causing her all the symptoms you have described. She had her surgery in mid September, including an illeostomy — yep, the idea of the “poop bag” as she calls it is the biggest hurdle for her (we have even named her stoma, and the laughs from that seem to make it easier to deal with.) She had a few complications from the surgery, so the hospital stay was longer than she had expected, but she has just had her second session of chemo.

    Your story also strikes a chord, as I live away from my family. In addition, I have a senior in high school, so dividing my responsibilities is heartbreaking at times. I know that eventually I will be staying here with her and my dad for longer periods, but I just keep praying that time will be delayed as long as possible. Your story has helped me to prepare for the days when she will need me most — and I her.

    For now, my role is to act as the cheerleader (“L-I-V-E We want chemotherapy”). Her prognosis for now is good — the doctor felt he was able to get the cancer, and that her five-year survival rate is 40-50%. I will cherish every day I have remaining with my very best friend — my mom.


  85. Three weeks ago I had my ovaries and fallopian tubes removed. My grandmother and aunt both died of ovarian cancer and this past August an ultrasound showed a complex mass on my right ovary. My CA -125 blood test was 50 and the next step was to find out thru laproscopy if I had ovarian cancer or not. My own mother had a complete hysterectomy at the age of 49. She is the one that was constantly on me to be pro active about being alert to any signs of ovarian cancer. I will be 51 next month and my own daughter is 27 now. I cried and cried after reading your story and only thru the Grace of God and many prayers the mass was benign. I am not sure if I would or could be as strong as your own mother to go thru what she went thru. And how my own daughter could ever deal with it as you were able to deal with it. Thank you for your article and for the wonderful memoir of your mother and the love of her daughters.


  86. I understand what you went through with your mom because my mom died from stage IV ovarian cancer on October 7, 2005. She had been sick for a while but didn’t tell anyone. She started losing weight when one day she asked me to put some lotion on her back, I could count her ribs. Immediately I told her she was going to see her doctor and I was going with her. Surprisingly enough she did not put up a fight. I am an RN and I had worked with my mom’s doctor in the ICU. When we saw her for the appointment, she walked into the room and told me that she had been trying to get my mom to have tests for almost 3 years but she REFUSED!!! By the time she was diagnosed, it had spread throughout her whole body. Ten days following her diagnosis, she died. She spent the last 14 days of her 85 years in the hospital where she was a volunteer. A position she cherished more than life itself. They treated her like a queen. I cried everyday. I remember what you said about you and your sister how you talked your mom everyday, telling her how much you loved her and how proud you were of her. I did the same thing. She died peacefuly in her sleep, just like she wanted. I was her medical power of attorney. She always told me that she did not ever want to be on life support. For me, the hardest part of her final days, was signing the “Do Not Resuscitate” papers, but I honored her wishes. She lived a full and vibrant life. My story doesn’t end with the death of my mom. Two years ago, after a summer of chronic constipation and change in my appetite, I too was diagnosed with ovarian cancer. Like I said, I am an RN, I thought I knew my body better than I did – but the symptoms were subtle. I had the major debulking surgery, almost 6 months of chemotherapy, hair loss, weight loss and now some healthy weight gain, I am currently cancer free. I have a 25-year-old daughter, she was devasted when I got sick. She was away in grad-school. She too was torn, but I made her stay and finish and she did. My husband took care of me, and my faithful “mutt” – dog, Lucky. I had bad days. Days I thought I wasn’t going to make it, but I am making it. I talk to my mom every day. I know she was with me throughout my surgery and rehab, throughout my chemotherapy, my hairloss, my days of feeling sorry for myself, and through my good days now. Your mom was blessed to have you and your sister. I was blessed to have my mom for 45 years. I am blessed to have my daughter, my husband, my sister, and my brother. We are blessed to have one another. Your mom is with you too everyday, I’m sure you know that by now. I don’t know how much time I have left, I guess none of us do, but I am enjoying every day that I have, because I know my mom would want me too just like she did her life. Thank you for your story. Thank you for listening to me. May God bless you for your love for your mom. Congratulations on upcoming wedding. I know your mom is proud of you!!! :)


  87. Amanda, I want to thank you for sharing your Mom. I lost my Mom 5 years ago to liver and pancreas cancer she battled this for 18 months. I miss her everyday. After she died I started writing her daily “letters” in a journal. Things I wanted to share with her. It is no longer a daily event now, but every now and then I write her a note. My sister in law who is 49 was diagnosed with stage IV ovarian cancer in May. My husband is very upset obviously but his sister feels she “not terminal”. She hates the “porta potty” as she refers to her colostomy. She still has not been able to care for it herself. My mother in law cares for it. She is scheduled to have it reversed in December, the doctor did tell her she may not be able to do it. She will start another round of chemo after the surgery. Your Mom treatment plan sounds very much like that of “Jackie’s”. Thank you again for sharing your story and your Mom.


  88. Amanda,
    While taking a break today, I saw the topic on the cover of the LHJ November issue and was compelled to read it since I lost my mother to ovarian cancer at the young age of 62. On my 27th birthday that year,also the date of her third and final surgery, we were told Mom had about 6 weeks to live. She lasted 6 months. I’m glad the doctor was wrong and we had her a little longer. As I read your story, it was like reading our story and journey. So many similarities. My Mom lasted about 2 years from the date of detection. She displayed all the symptoms. Since some of her previous experiences with doctors wasn’t always pleasant, she was reluctant to go for a check up. My sister who is a nurse, insisted that she go and made the appointment. It was not good news. During the final months of her life, my sister was able to keep Mom comfortable and we were able to keep her at home. I remember one day that it was just the 2 of us. Mom decided that she wanted to select the outfit and rosary beads that she wanted to be laid out in. It was at this moment that I realized that she was well aware that there would be no cure. Although it was very sad for me, it was one of the closest moments that we ever shared. She was a woman of strong faith right to her last hours and this is how she was able to accept the inevitable. I prayed so hard for her recovery, but the time came that I realized that it was not in God’s plan. I then prayed for her comfort and peace which he granted to her at 2:00am on Sunday October 14, 1979. At the time of her passing, she was holding our younger brother’s hand and then she slipped away. Mom lost her mother to ovarian cancer on October 31, 1947 at the age of 60.

    Thank you for sharing your story.


  89. My mom was diagnosed with small cell lung cancer stage III in October of last year. She had just turned 42. She went through the chemo and radiation and was declared in partial remission. Then on Mother’s Day, she had a scan done on her brain and they found 5 tumors. She had brain surgery a few days later. We all thought she was doing pretty well until 3 months later when the doctor said that she had 3 months to live. In his opinion he didn’t see her making one month.
    She did though. She made the 3 month mark 4 days ago. She turned 43 at the beginning of October and that was exciting. She was doing really well.
    However, two weeks ago my 17 year old brother and I had to put her in a nursing home. We were sharing caregiving shifts and she had gotten catatonic. Her hospice nurse said we didn’t have any choice anymore, she needed more care than we could provide and the pain meds they were giving her weren’t helping.
    By the time the ambulance arrived to pick her up 12 hours later, she was awake, but not aware or coherent. She doesn’t remember the first week she was in the nursing home.
    I remember standing on the step outside with my brother next to me and my husband behind, watching the medics load my mom into the ambulance. I felt like I had failed and betrayed her, that I hadn’t done everything I could. I was also feeling relieved that I didn’t have to be her caregiver anymore, and that made me feel guilty. I wanted to get back to my life, over the last year I had missed out on so much. I was also looking forward to not having to be looked to for every little decision. I didn’t want to be in charge and decide my mothers care. I’m only 23, I shouldn’t have to deal with this stuff…but I do it because I love my mother, and if I didn’t, my 17 year old brother would have to, and that’s not right.
    She knows we love her and that we will be okay when she decides it’s time for her to go. The only thing we can do now is make sure she’s happy and comfortable and be there with her.
    Thanks, Amanda, for sharing your story with us. It gave me hope that one day I will be able to let go of the anger and most of the sadness, and remember the good times we had, instead of dwelling on the process of her death.
    Thank you,
    Jess


  90. Hi Amanda,

    I found myself at the doctors office today with my husband glancing at Ladies Home Journal. When I saw the article I was compelled to read it because I also lost my mom this past July to Breast Cancer.. I familiarized myself with alot of things you mentioned regarding your mom… She battled Breast Cancer for the past 16 years, December of 2009 began the downhill roller coaster ride I wasn’t prepared to ride… I had to fly to Mexico on a moments notice when she began to accumulate water in her lungs… After we came back to the U.S. I was told in private by her oncologist I had to mentally prepare myself to losing the battle to cancer.. In my mind I knew then I had to make the most of every moment with her, in my heart I was a total mess.. A shell of the strong woman my mom instilled in me… The next 7 months of her life, she continued to try to fight … She decided to do chemotherapy again for the 3rd time in past 3 years, weak as she was and frail .. She is still my hero, she never complained about a thing… We would make an outing of her doctor visits to keep things a lil normal .. I temporarily moved back in to my mom’s home to care for her and my 91 year old grandma… My 18 daughter was a huge help in keeping my sanity, she would help out on friday nights so I could have time for me and have a date nite with hubby .. Despite nurses talking to mom about what hospice care was she didnt want to talk about dying, she hoped to see my daughter graduate from High School… I took a leave of absence to fully take charge as her health worsened in the spring.. In hopes to make her last days on earth sweeter the four generations of Vaca women flew to mexico in June.. Sadly, she died a month a 4 days later, I still remember her last 10 days of life. It breaks my heart to remember how she was in pain, and body couldn’t handle anymore food .. I loved being her cargiver and wouldn’t have changed a thing, my love for her gave me the strength to keep going .. As the holidays are approaching I am feeling anxious, sad, and missing her so so much … I pray for both me and my daughter we don’t forget but that it gets easier to deal with .. THanks for your story, congrats on your upcoming wedding .. YOur angel will be smiling on you and fiance your wedding day without a doubt :D


  91. Amanda, so sorry you lost your mom at such a young age. While reading your story I cried the whole time, my mom passed July 26,2009 after being diagnosed with liver cancer 3 weeks prior. One morning she woke up saying she slept like a baby, she had prayed to god to take her fast so we would not suffer and she said that this calming feeling took over. God answered her prayers, she never had pain and she went fast.

    She shown me how to live life fully and how to accept death with dignity and courage. My happiest day will be when I see her in heaven!
    Thank you for sharing your story and allowing us to share ours. It is healing.


  92. Amanda, Thank you so much for sharing your journey with LHJ. I lost my mother last year at age 90 (her, not me!)and my second step-father 55 days before her passing. They both had long fulfilling lives with Mother having a blood disorder and some dementia. My husband still doesn’t get why I can be so sad some days. Your story has helped me so much. I think of her daily and sometimes even laugh at something I know she would find funny or interesting. I know she’s watching somewhere cheering me on. Thank you again for writing about such a moving and extremely private part of your life. Life does go on!!


  93. It has taken me so long to respond to your amazing article but after crying through it the first 3 times I needed some time to collect my thoughts and read the overwhelming responses on this site.

    On my mother’s 56th birthday this summer she was diagnosed with stage IIIC ovarian cancer. A couple weeks before she said her appetite wasn’t very good; 2 weeks before diagnoses she said she was tired. Literally the next week she had gained over 5 pounds and her abdomen suddenly looked as tho she was pregnant. Since that time I feel like my life has been torn apart. I am an only child and she is the caregiver for her spouse who is disabled. Why is life so unfair? She is my best friend and the most amazing grandmother to my kids.

    So far her CA125 has been going down and this week we will find out if it is at the level we need it to be. Chemo has been so much harder than any of us thought. We are praying for positive results.

    Your article was so encouraging because I felt like I was not alone. It is so frustrating only hearing about breast cancer and not finding much information about ovarian cancer. After reading all the posts on here it makes me sad as it seems most are stories of loved ones passing from this nasty disease but some show there is a chance of some enjoyable times despite such sad times. Thanks for sharing your story and for getting information out there to other young women. PS..felt even more connected as I am a physical therapist myself. Prayers to you.


  94. Amanda

    I lost my mom on Sept.9, 2008 from ovarian cancer, she just turned 57 yrs old on Sept.5th. She was diagnosed with it on August 17, 2008, I still cannot believe how quickly she went. My dad wasn’t at the hosp.yet when the doctors decided to tell us she was dying. My younger sister and I were in her room with her when the docs pulled me out to tell me she only had a few shorts days left. When we left the hosp. I had to be the one to tell my sister and father the horrible and watch them fall apart in front of me. My dad and I were by her side the day she passed, it isn’t something a person can ever forget. I was reading thru the comments and the majority of women that are dying of ovarian cancer are in their 50′s, I have twin daughters, so for their sake and for every woman I support educating women to be their own advocate. Thank you for sharing your story.


  95. Amanda, your story was very moving. I am an ovarian cancer survivor (12 years). I was so fortunate. I had a large benign tumor all through my abdominal cavity with the ovarian cancer attached to the bottom. My doctor actually felt the tumor when he was palpitating my abdoman during a routine physical. I was immediately sent to a specialist who did surgery four weeks later. It had not even spread to my lymph nodes. Two months later my cousin suffered a colapsed lung. When they drew the fluid out of her lung, they discovered cancer cells. After tracing the source they discovered she too had ovarian cancer. She was not so fortunate and lost her life to this horrible disease. I was 51 years old. My cousin was 52 and was dead at 54. She had many symptoms – bloated stomach, etc., but her doctor just kept telling her it was nothing. She was not given a CA 125 until after they discovered the cancer cells. We should all be demanding a CA 125. It is not the ovarian cancer test we need but it is the best thing we have going. I was not given one until they found my tumor and even though it was in the very early stages my CA 125 count was high.

    Thank you for sharing your story.


  96. Amanda, Your story about your mother was not only incredibly beautiful, but also a fitting tribute to a wonderful person. I started reading it on LHJ website & tried to finish it in the November issue of LHJ (but too many tears); I finally finished reading it tonight. I have to tell you WHY your story is sooooo special to me….My Dad went to your Mom for therapy in Dover, OH @ Monroe Mall. My Dad had a stroke 15 years ago and was paralyzed on one side. Your Mom would work his arm & leg to keep them loosened up. Your Mom would tell them the funniest jokes, joke around with them & just be her natural personable self….They loved her! They would come out of there after his session in such a cheerful mood….because she had just “made their day”. My Mom also died from cancer this past July and your Mom called her in January (a couple of weeks before your Mom passed) and talked to her while she was in the nursing home with stage IV stomach cancer. My Mom really enjoyed talking to her…she was such an inspiration to her! Your Aunt Pat & cousin Shelly work for WTUZ “country” radio station….Ed owns the station & is my fiance’…..when Shelly’s daughter Ashley graduated from high school, Ed & I went to her party….Your Mom was there & I just HAD to meet her & tell her HOW MUCH my parents loved her! She was such a joy to talk to! She is the same age as me….so it really hits home. Thank you for getting the facts out there on ovarian cancer. Thanks again for a beautifully told story. P.S. I think the picture of your Mom taken in Key West in the 90′s is an absolute gorgeous picture of her. I think you look a lot like her and I’m sure you’re just as beautiful inside as she was. Joanne :)


  97. Amanda,
    Thank you so much for sharing your story. My father has terminal pancreatic cancer so your story really touched me in so many ways. I pray you and your family will continue to heal and move forward, I’m sure your mom would be so proud of all that you’re doing. Cancer is a horrible thing for anyone to go thru, not only the patient but the family as well. I admire people like you who are getting the word out and making people more aware of the signs and symptoms they should be looking for. I pray that none of us rests until a cure is found and this deadly disease can be stopped in it’s tracks.
    Thanks again and God bless,
    Amber


  98. Hi Amanda,
    I just finished reading your article, and was so moved at how your story parallel’s my own in many ways. My mom passed away in June 2009, at the age of 54 after a 5 1/2 year “adventure” (my mom never used the word “battle,” only “adventure”) with stage 3C ovarian cancer. My husband and I lived in New York at the time, and I was able to come home and care for her in the last two weeks of her life, as well as many trips back and forth during the 5 1/2 years she had cancer. Watching her mind become ravaged by the cancer, admitting her to Hospice, sleeping on the floor next to her, giving her morphine, bathing her, dressing her, changing her, making sure she had oxygen, and then being next to her and watching her take her final breath.
    In the year & a half since her death I am able to speak of what happened, but the sadness is still there – it always will be. Watching my children, who adored their “Mimi”, grow up not really knowing her. So many things…I miss her so much. She was my best friend.
    Thank you for your story, thank you for putting into words what has been the reality for so many people. I am grateful that LHJ gave you that opportunity.
    Sincerely,
    Kristen


  99. Hi Amanda,
    I had to reach out to you & thank you for sharing your story. I normally wouldn’t read such a story because I have such a close relationship with my Mom and to read something like that would really make me sad. But for some divine reason I did read your story and it lead me to push my beloved mother to the doctor for an ultrasound. The symptoms you described were exactly what she had been writing off as “getting older”. Just 2 weeks ago she was diagnosed with ovarian cancer and returned home yesterday from her surgery at Memorial Sloan Kettering. As increadibly sad as I am, I cannot help but feel she is lucky to perhaps have a chance that she wouldn’t have had if your story hadn’t informed me. Thank you from the bottom of my heart – I’m sure your Mom is so proud of you!! Lucy


  100. Dezr Amanda, I am a reader of LHJ and happened to catch this issue in the hairdressers tonight. Your article was so incredibly written, I just had to come home and look up the web site given at the end. Thank you for your courage in sharing your experience. This will be the first holiday season without my Dad. He passed away in July, 10 days after suffering a stroke. We thought he was going to pull through, we even got new clothes together for rehab. But God had a different plan, one I know I’m not to question, but still do. I was fortunate enough to have danced with him at my wedding 4 short months prior to his stroke. The photos are bittersweet but I truly know that I was blessed to have him there and cherish the pictures. My mom, sister and I lean on each other alot and know it’s ok to be sad. I will be thinking of you and your sister this season and hope in some way, you find some peace and joy. My best to you and thank you!


  101. I too journeyed with my mom as she battled cancer (lung with metastasis to he brain from July 2003 -February 2007). I happened to read your story as I was waiting for a new set of tires to be installed on the car that I received as a gift from my mom just prior to her death in 2007. It was the day before Thanksgiving and the day is an anniversary of sorts for me…. for it was on the day before Thanksgiving 2006 we were notified of a matastasis of lung cancer to the brain and we began the final chapter of life – not pretty…. Then, at just after 7 p.m. on February 7, 2007, she died. Wow, I’m in awe.


  102. Amanda- I am so sorry for your loss. Thanks for sharing your story. It was so touching. I could feel your pain. My own mother is still alive but was hit by a car in September. It was a very scary time but she came through it. I can relate to the exhaustion of being a caregiver and being wiped out physically and emotionally.
    Thanks again for writing it.


  103. Amanda…This will be your first Christmas without your mother. It will be my sixth without my mom. It is still very very sad, but it gets easier. The hardest part is knowing that she never got to know my youngest grandson who was only two-and-a-half months old when she died from lung cancer. Nicholas will be six on December 7 and she would adore him. His older brother Andrew is now fifteen and was “back seat buddies” with my mom when we travelled. He got so interested in her life story that he has compiled a geneology for every side of his family that far excedes anything I could have hoped for. I am glad you had time with your mom. We only had three weeks and one day from diagnosis to the end. Your story was so beautifully written that I relived that time with her…I hope it comforts others as it comforted me. I know the Christmas season will be hard, but cherish every lovely memory you have.


  104. Hi Amanda, I too cried when I read about your mother. My mom died this past Aug 24th. I am an only child, and went through alot of the things you described. My mom had stage 4 liver cancer with no treatment except a test pill called Nexavar. She would have been 79 Nov. 29th. This has been the worst year of my life. I know your pain really well. Sincerely, Judy


  105. I feel everyone’s pain! My mom was diagnosed in May with ovarian cancer and died 3 months later. She was 1200 miles away and I only saw her 2x – once after her surgery and the weekend she died. I was misled by the drs who said she’d have chemo and be fine. Totally NOT the case. I wish the drs were honest with me – I would’ve spent more time with her.


  106. Our mom was diagnosed with ovarian cancer in 1984. Her children were in our mid twenties to early thirties at the time. She had both ovaries removed with masses on them and was given a liquid radioactive solution in the abdomen to kill the cancer cells.

    She had a reoccurence in 1993 and had ovarian cancer cells in a colon tumor. At that time she received traditional chemo. Each of her five children living in four different states were able to be with her during treatment.

    I am happy to say she survived once again. Today she is 87 and had lived a good long life enjoying each of her children and grandchildren. As we told her many times, God wasn’t ready for you yet. At the present she is in hospice care, but her illness is simply old age. She remains cancer free and we are ever so thankful to have had so many years with her.

    Blessing to all who lost a parent young to this disease.

    She had the BRAC -I test and it shows she does not have the cancer gene. Research needs to continue for the disease to prevent more deaths.


  107. Hello Amanda~

    As you told your touching story about your Mom, I felt as if you were telling my story. Although my Mom did not pass from ovarian cancer, the emotions you expressed were as if I were reliving my experiences with my Mom.

    Mom was a vibrant, full-of-life, generous, smart, loving person to everyone she encountered. Mom’s stroke and passing seemed to happen in both a life-time and a blink of an eye although it was only 19 days. She had a stroke as a result of an extremely rare complication from a cardiac procedure to repair a heart arrhythmia. During those 19 days, I stayed by her side in the hospital as much as I could; sleeping in the lounge or her room

    Mom couldn’t get her affairs in order or share her thoughts, feelings, and wishes with us because she was never conscious during that time. I was sad not to have that time to talk with her. During grief counseling, I realized I could take comfort in knowing that Mom and I left nothing unresolved or unsaid and I am so grateful for that.

    Mom’s passing had the most profound effect on me. I could never have imagined the depth of pain and sadness I felt. It is a feeling others can only understand having gone through the same experience. Before Mom passed, I thought I could understand what friends felt when they lost a loved one but I was so wrong. I had no idea what their loss felt like.

    It has been five years and eight months without Mom. Yes, the edges are not as sharp as they were but the sadness of being without her is still here. I miss her each and every day; sometimes remembering with a smile and sometimes remembering with tears.

    My very wise sister said to me that losing Mom is something we will never get over but we will get through…and we try one day at a time.

    Thank you, Amanda, for writing your Mom’s story and allowing me to write mine. When you see the painted name sign with your Mom’s name, buy it and cherish it.


  108. Amanda
    Thanks for sharing your story. My mom was diagnosed with stage IV ovarian cancer in November 2009 and she passed away January 6th 2010. Getting through the holidays without her has been rough, but it is getting easier as time goes on. I still think of her and miss her every day. More needs to be done to raise awareness about this type of cancer! Thank you again….I believe your mom would be very proud of you!


  109. Amanda, reading your story was like reliving mine. My mother was diagnosed with Ovarian cancer in 1992 and died in 1996. Statistics now are nearly what they were then. Life expectancy for 5 yrs is about 30% – about what it is now, but most women don’t live that long. My mother endured more than 80 rounds of chemo and numerous surgeries. I, also, was with my mother when she died in the hospital. Hospice didn’t take over until just 9 days before her death. I was an only daughter (with four brothers) and a daughter who turned 16 two days before mom died. There’s no truer statement than time is the only thing that heals this pain. I cleaned my mother’s house every single week and was with her and my father at least four days a week – I couldn’t get enough of it, but none of it could make her better. My mother begged me to get a hysterectomy and I did so exactly one year after her death (I was 39). I’m now 52 and my daughter just turned 30. I’m concerned about her health and when her childbearing years are over, I’ll encourage her to have a hysterectomy. The risks to us and you are overwhelming and you must be proactive about your own health. I miss my mom every single day, but like you, am relieved she’s no longer struggling with this horrible disease. I must say that on day she died, I went home and cooked a big dinner for my family. I had been busy taking care of my mother for five years and couldn’t imagine what I would do with my newly freed up time. It truly was time to take back my life and move on – hard as that was. I know she’d be proud. Take care and know that others feel your pain.


  110. My mom was diagnosed at age 63 with stage 4 ovarian cancer and I thoght I would be writing a story similar to yours very soon after that but her doctor decided against surgery because he knew he couldnt get it all and started her on what ended up being 18 months of chemo, 5 different types, remarkably she handled them okay. She laughs that she is the only person who stayed fat on chemo.She had a bad infection after a port was put in and then had to be removed and in the 9 years she has had tumors spread to her spine and vaginal area both of which were treated with radiation.Her attitude is great and she never complained. She even felt guilty because she was still living when so many people she knew were diagnosed with various cancers and had died.Even her doctor cant explain her survival.I dont read of anyone who hasnt had the initial debulking surgery and I have to think that his way of treating her should maybe be tried for more woman with advanced cancer. She will be 72 in July and we just take one day at a time and enjoy whatever time we have together.


  111. Hello Amanda,
    My prayers and sympathy are with you.
    My mother, Bonnie, died in 1997 at the age of 55 of ovarian cancer, after over 3 years of being mis-diagnosed.

    My mother had a hysterectomy several years before, but the ovaries were left intact. Throughout the years after that, she went in for annual exams, but I found out later that the doctors were not performing a pelvic exam on her, saying the hysterectomy made a pelvic “unnecessary” (I found out too late)!

    When my Mom first experienced symptoms, the doctor who was the Family Doctor for many families in our town; told her she was in menopause (without doing a pelvic, or any other tests), and prescribed hormones. As time went by, and she got no relief from the symptoms, she went back to the doctor and was referred to an internist. The internist diagnosed her with diverticulitis, and told her not to eat foods with seeds (again, no tests). After many more months with no relief, and now becoming very ill, she went back to the family doctor, who diagnosed her with pneumonia. He prescribed antibiotics and sent her home. When she got to the point of being unable to breath properly, she put herself in the hospital (NOT something my Mom would normally do). A few days later, a pulminary technician who came to her room to run routine tests realized something was not right, and tested the fluid she had built up. They discovered her lung was collapsed, from the fluid created by an ovarian tumor!

    Once the diagnosis was made, she had surgery at the local hospital, to remove the ovaries, tubes, and as much of the tumor as they could. The Head Surgeon performed the surgery. The surgery was followed by chemo for 9 months, once a month. A few months after chemo was over, she began experiencing the same symptoms. She went to her oncologist, who told her to get her affairs in order.

    At this point, I got upset at the ease in which the oncologist told her to give up, and I took her to a specialist who had saved the life of my step-sister-in-law years before, who was diagnosed with the same type of ovarian cancer. The specialist was a Gynecological Oncologist, at Good Samaritan Hospital in LA. Dr. Nalick had to perform another surgery to see what was going on in the area, and found startling news: my Mother’s tubes and ovaries were still intact (although the post-op notes from the first surgery clearly stated that they had been removed)! The source of her cancer had never been removed, and was allowed to continue to grow throughout this whole ordeal! By the time this was all discovered, unfortunately, the tumor had wrapped itself all around her large and small intestines, and everything was all tangled up together. There was not much left that could be done. Dr. Nalick, did his best, but had to remove most of her intestines, and had to perform a ileostomy (somewhat like a colostomy). It was too late to save her, and She died soon after.

    This whole experience has taught me important lessons (specific to my Mom’s case, and in general), that I want others to learn before it is too late for somebody else’s Mom:

    1. If something does not feel right, get help right away. If it still does not feel right, or you are encouraged to be silent, scream, yell, and pound your fists….you must fight for your life!

    2. If the doctor acts like something is no big deal, or if you don’t get relief from your symptoms with the treatment your doctor gives you, fire him. He is not our friend, he works for us. He is human and can make mistakes.

    3. Having the trusted family doctor, or the Head Surgeon, or the well-known oncologist as your doctor does not mean you are getting good treatment. Having great medical insurance does not guarantee great medical care. Get several doctors’ opinions! Ask a lot of questions! Doctors make mistakes.

    4. The Pap test is not an effective test for ovarian cancer. Rarely ovarian cancers are found through Pap tests, but usually these are at an advanced stage.

    5. Insist on a regular pelvic every year, regardless of a hysterectomy, etc. Tell the doctor to feel your ovaries thoroughly. A pelvic exam is recommended because it can find some reproductive system cancers at an early stage, but most early ovarian tumors are difficult or impossible for even the most skilled examiner to feel. But it is one tool to use, in addition to others.

    6. If you plan to have a hysterectomy, talk to your doctor about the option of having the ovaries removed at the same time. If you have a family history of ovarian cancer, insist on the removal of the ovaries. If ovaries are removed vaginally, one tiny ovarian tissue cell can be left behind, possibly resulting in ovarian cancer later.

    7. Talk to your female relatives and friends about the regular gynecological care you & they receive. If your sister or friend gets different care (tests, etc.) find out why. I wish I had known that Mom was not getting regular pelvics after her hysterectomy….I would have told her that wasn’t right.

    8. Ask your female blood relatives about their ovarian history (sisters, aunts, mothers, grandmothers) to see if you are high-risk. If there is any history in your family, make your gynecologist take notice, and do whatever he can to order the tests you must have regularly, including transvaginal sonography. Mine did everything he could to get those tests to be approved regularly.

    9. There has been a lot of research to develop a screening test for ovarian cancer (such as there is for breast cancer); but there hasn’t been much success so far. There are 2 tests that are used most commonly to screen for ovarian cancer. These tests, transvaginal sonography and CA-125, are often offered to women who are at high risk of developing epithelial ovarian cancer, such as those with a very strong family history.

    10. A baseline CA-125 is something every woman should have while known to be healthy, then have a CA-125 done annually. This allows your doctor to compare the results, year after year, to see if the level elevates, indicating a problem.

    11. If your CA-125 rises, or there are other problems, you must see a Gynecological Oncologist immediately. Do not wait to be referred to one…INSIST ON IT! This is the advice my Mother’s specialist gave to me.

    12. Women diagnosed in the earliest stages have a five-year survival rate of nearly 93 percent, according to the American Cancer Society (ACS). Until recently, ovarian cancer was known as a “silent killer” because it usually wasn’t found until it had spread to other areas of your body. But new evidence shows that most women may have symptoms even in the early stages, and awareness of symptoms may hopefully lead to earlier detection. Early detection is important; still, only about 20 percent of ovarian cancers are found before tumor growth has spread beyond the ovaries. Your chance of surviving ovarian cancer is better if the cancer is found early. Listen to your body!!

    13. I found out that Chemo is often scheduled once per month, because it is easier for the office to schedule that way!!! That is what happened with my Mom. She should have had chemo every 3 weeks.

    My Mother was an active, smart, independent woman, who believed that the medical professionals who treated her knew what they were doing. I believed the same, and neither of us questioned the treatments or knew about Gynecological Oncologists, until it was too late. While ovarian cancer is rarely diagnosed early, I believe she may have had years left to live, with a high quality of life, if her doctors had cared for her the way her family did.

    Knowledge is power…..please use the power of this information to save the women in our lives!


  112. Amanda,
    Odd enough I read your article while at the hospital with my mom being newly diagnosed with ovarian cancer. The process for diagnosis has been very poor and I am really starting to wonder whether it’s ovarian cancer.

    My mom was on vacation when she became ill. She had to have ER surgery at which time they removed 20cm of her intestine and removed a mass (benign) the size of a cantaloupe! Biopsies of the colon and the mass were fine, the cancer was found in the omentum, the lining of the intestines. She spent two weeks at a hospital in Mexico before I could transport her back to the states. Upon return, we were told she had a severe fungal infection in her blood and may not make it. Thank God, she survived. Because of the intense surgery and infection of the wound, surgery is not an option for staging.

    Doctors here are stating she has stage 3 or 4 ovarian cancer. I have had different doctors (OB-GYN, surgeon, internal medicine, oncology, etc) tell me different things. I brought back slides with tissue from the biopsies and the tissue itself preserved in formaldehyde. But yet, no other testing has been done. Everything is being based off what I brought back from Mexico! I can’t believe this when they said the slides I brought are in poor condition and the CT scans done in Mexico are of poor quality. How can you base a diagnosis off of something performed in another country and especially with something you say is of poor quality!?!?!

    I have been pushing doctors to do further testing. After demanding further testing they finally decided to do a biopsy of “something” pressing against the liver. Suspecting it was the cancer, they performed a biopsy, which came out fine, no cancer. They did a second biopsy, still no cancer. The initial CA-125 test done when she got home was normal. HOW CAN A PATIENT THAT THEY SUSPECT TO HAVE STAGE 3 OR 4 OVARIAN CANCER PRESENT NO OTHER SIGNS OF CANCER? I’m trying to be my mother’s advocate but it is so difficult with the medical bureaucratic system. I just wish I knew who to turn to. I ask all your readers for their prayers . . . we still have a long battle ahead of us.


  113. Amanda, Thank you,so much for sharing your Moms story. I cried a lot reading it and smiled some too,remembering. My Mom died of ovarian cancer also, it will be 24 years this January, 2 days after her 50th birthday, she was only sick for 10 months. She had no family history of ovarian cancer. It is a very long and grueling death , I was lucky, my Dad took a leave from work and my younger sister could,too. My children were only 7 and 4 and very close to their Mam, how do you explain something like this to children? Then, last July my fathers youngest sister died of ovarian cancer,again no family history there at all. She was like a sister to me. She fought for 9 years, which does give us women in the family some hope, but for my sisters and I, we now have it on both sides of the family. So, I hope you and your sister are getting tested every year, it is never too soon to start,ovarian cancer strikes at any age. So again, thank you Amanda for sharing with us.


  114. Hi Amanda,

    Thank you for your story. I cried through the entire last part of it as I recalled my own journey with my mother 14 years ago. She was first diagnosed with Ovarian Cancer at age 65 in September 1994. She went through 8 months of chemo, was very sick, lost all of her hair, but then was pronounced well. She had 14 good months before it re-occurred and she died just 5 months after my Mother-in-Law died of Pancreatic cancer. So my children, (daughter age 7 and son age 4) lost both of their grandmothers to cancer within five months of each other. Cancer is a horrible disease and I thank you so much for sharing your story so that others can learn about Ovarian Cancer and what can be done to make women aware of what they need to do to stay safe and to catch it early. My 2 sister’s and I have CA125 blood tests, Vaginal ultrasounds, pap smears, and breast exams faithfully every year. The 3 of us are fortunate to have Gynecologists who are willing to go the extra mile on each of our visits to insure that we stay healthy and to make sure if we are going to get it that it is found in the early stage. I hope that someday soon it will be a routine part of the annual exam for women to have the CA 125 Blood test and vaginal ultrasounds so that they can be diligent in staying healthy. Amanda, what can we do to make this a required exam? I would love to get together with you and anyone else who is interested to try to get a bill passed in Congress to work with Insurance companies to make this happen. Perhaps your story will help this come to fruition. Thanks again.

    Cindy – Lake Forest, IL Tuesday, January 4th, 2011


  115. Thank you Amanda for sharing your story. My mom was diagnosed in 1993 shortly after her 50th birthday. I was her primary caregiver as her husband could not handle it and left her. (My mom was planning on divorcing him anyway. Unfortunately – that did not become official until after she died. Talk about a legal headache. It took 10 years to settle.)
    My mother went thru two major surgeries with 3 chemo cocktails in between. She died a gruesome, painful death in April 1994.
    It took me several years to gain closure (and that’s a whole other story).
    I am finally at peace; however, sometimes (when I least expect it) a smell, a memory shared with my daughter (who never knew her) gets the tears rolling. But it is OK. The edges do soften – but it is a loss forever felt. One just must find the tools to get thru it and move forward.
    Sounds like you are on that path. God Bless.


  116. dear amanda,
    i too lost my mom to ovarian cancer 22 years ago. my story differs in the fact that i was 30 years old pregnant with my 3rd child and did not know she was dying til 3 hours before she died. i think she was trying to protect me in some way and also was a powerful believer in positive thinking. 2 hours before she did pass she announced she was going to beat this THING. God had different plans!
    i still have times where i miss her terribly, she was my best friend! when is there a good time to say goodbye to a loved one? never, probably. your story touched me deeply and i pray all is well for you now. i know live with the fear of getting it. we struggle with finances so i certainly cannot afford the test. i believe the good Lord has a plan for me and i trust in him. may God bless you , your mom and your loved ones. and i thank you for sharing your story.
    With Love IN Christ,
    lisa


  117. amanda i forgot to tell you how fast it all happened for my mom. 3 months! she became ill in september and by jan. 8 she was gone. it really to this day can be difficult to wrap my head around it!
    once again,
    With Love IN Christ,
    lisa


  118. Hi Amanda,

    I took my son to the dentist today and saw your article about your mom in the November issue of LHJ. I was just about in tears, because I too, lost my mom to ovarian cancer on February 21, 2010, just 2 weeks after you lost your mom. My mom was diagnosed in November 2005 and was Stage IIIC and went through all the end stage symptoms with the fluid in the abdomen, etc, too. It was awful to see her suffer like that, at the end.

    I too live far away from home. My parents are from Maine and I’m an Air Force wife living out in New Mexico. Your story touched me, because my mom was only 59 when she died and was an outgoing, spirited woman like your mother. My mom was also successfully in business for 30 years, owning a craft/quilt shop called “Cottage Herbs” in Berwick, ME.

    There were just so many coincidences in your story, like the hike that you took with your mom when she was in remission and was so vibrant and happy. I’m so glad you got some pictures of that day. I too had the same experience in 2008, when my husband, son and I flew home to see my family for a couple of weeks. We all (my brother’s family, mine and mom) went to “York’s Wild Animal Kingdom” in York Beach, ME and had a wonderful day with her. She was so full of energy and happy her family was all together again. I took a ton of pictures and video that day and made a slide show set to Israel Kamakawiwo’ole’s “Somewhere Over the Rainbow” too!! I about cried when you mentioned that song in your article, because it’s so hard for me to listen to that song today, without feeling really sad and missing my mom tremendously!! But when I do hear it, it takes me right back to that day when she was feeling good, vibrant and very happy.

    I usually don’t post comments on public websites, but I just had to today. I know exactly what you went through and what you’re going through now. I still have my dad and my parents would’ve been married 40 years last year. He misses her terribly and like he told me…”you just never get over it…you just learn to live with it.”

    I wish you much happiness in the future and with your wedding. Thank you for sharing your story, it really meant a lot to me to read it and to know that there was someone else out there that experienced a great loss of a great woman like I did.

    Best wishes,

    Kari Brodie


  119. Amanda, I am so sorry that this happened to you and all the others that list loved ones to cancer. On April 29 it will be a year that lost my mom. She collapsed at home and was rushed to hospital. There me and my sisters were told maybe she might have a tomorrow on her liver, and released to go home and see her dr. The day after she come home I noticed she was retaining a lot of water. I took her to her dr, who remitted her to the hospital. He then told us that it was to late. She had last stages of liver cancer. I tried second opinions and liver transplant. But they all said the same thing. She was even denied the liver transplant. All of a sudden I forced with the realization that I might lose my mom. I told her to fight that I was giving up. I tried so hard to find a way to cure her. But in the end we were forced realize no one could help her. A couple of days later she went home with hospice. She was so weak. The next day I realized she was worse. we called an ambulance and she went back to hospital. The dr said she could go that night r next week. I stayed with my mom in the hospital. I told her I would not leave her alone. My sisters stayed with her when I showered. I prayed iand told God it wasn’tto late to save her. Please, I prayed. I sat by her side, heather in my arms and talked to her. I refused to let the nurses turn the lights off at night. Didn’t want to wake up and it would dark. Four days later while I held her hand she took her last breath. In three weeks from diagnosis she wad gone. My world came crashing down. That last moment was one of the most precious moments in my life. She was there when I came into this world and I was there when she left it. I am 42 and still need my mom. I lovedher so much. And everyday I wonder what else I could have done to save her. I never thought something could hurt so bad. She was beautiful, full of life, had do much courage and a heart of gold. There are times I want to pick up the phone and call her. I struggle everyday with depression and want so mush for the pain to end. Amanda I dont know if you will read my story, but in case you do I want you to know that I have realized I need help with dealing with my grief. And I will look for a support group, because my mom was a fighter and would want me to be strong. Thank you for sharing your story and your strength.


  120. Just a quick note for anybody who will read what I wrote, I did this from my cell phone and I could not see the screen in full. So please excuse my typos and incorrect spelling.


  121. Dear Amanda, I read your story along with all the reviews…I have just recently lost my Mother Mrs. Anjali Banerjee; aged 56 right two days after my marriage which whcih was sceduled but took place on her wish on the 25th of March’12 in small Hindu ceremony. Primarily, she had gone through an operation during June’08 for her breast cancer post which she had also gone through the usual series of chemos and radiations post which her surgeon had prescribed her the Medicine- Famera(Novartis)which sinse than she used to consume on a regular basis till last dec’ for the 1st time Her legs started swelling which under the consultation of a famous urologists in Pune;India we got her biopsy of bladder done which turned out to be negative by the time her health deteriorated horribly and than is when she got operated again for her Stomach cancer which after the operation on the 29th of Feb at Ruby Hall Clinic came out as a IIIC stage, maybe it was too late and our negligence and casualness at many things had gone against her life for which she lost her precious life even before fighting the battle of Cancer during her 5th day dialysis(most of her organs went on support)after when she got admitted for the 2nd time due to hypoglycemia…it was complicated, she is relieved But with the name of the life taking disease CANCER; all the reasons are valid only the things which are not valid is the nature of the approach and with the way the family members treat and take all the utmost precautions in advance once before the deadly cancer has already entered…am sure many would understand the guilt and the un-forgiveness nature that will be there within me with which have to live my life along with my family members including my Father, am equally responsible for the same as if I claim that she was my strength who is no more that my priority should have been her health although there is no use in stating all these now after she has left us. I loved her the most. It was my understanding and belief that the advanced medical facilities and options are much more and better back in your countries compared to India which is why the chances are quite high for the longevity of the life of a cancer patient…but after reading all the above Emotions and Feelings of YOU ALL for your Mother have to admit that it’s all our bad fate and situation where CANCER always wins over these precious lives of our Mother’s. Like every mother even My MAA was all the more giving and caring where in that process she used to hardly pay any heed to her well being and be aware about her bad health even after all that happened to her 2008, though I used to be after her telling her but have never taken the total responsibility well before things got out of control and reach as her Homeopath did tell me after His visit at the hospital where she was all alone in that corner of the ICCU on that fatal day of her death that back in Oct’11 He realized than that one of her Kidneys was totally not functioning (the reason is still unknown maybe the regular medicine that she to take for her earlier cancer) It’s too long thank you for reading this but the whole part ends with her life and the struggle part in my life where in I have to live with this and without her, there are so many activities and golas in my life where she was completely a part of it and have considered to be but Now after she has left me I find it very very difficult to still carry on with those wishes… I have no tears left but still I weep all alone talk to her and in this process also hurt and be very mean to other family members along with My wife who has been very supportive and has actually given me that part of the strength to fight and live my life. Everything said and done- No one and nothing is permanent on this Earth; Everybody goes through this; She is relieved; You have given her the happiness and peach by getting married and Be Strong BUT it isn’t easy at all.


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  124. it took me more than a year since i read the article to be ready to write this, as amanda my mother died of cancer, we dont know the type , but we know it was too fast.since we knew until the day that she passed was only 18 long days, and it was a year to the days amandas mom passed. so when i read the article i was living through her pain but in a very shot time to get ready, still cry when i think about it but thats life one day at a time.


  125. I lost my mom from OC in January 2012. The past year has been the most sad and challenging of my life. There are days when I feel numb and other days when I just burst into tears unexpectedly from a memory or a thought. I expected the holidays to be hard, but it is funny how small random things can set me off (like seeing a woman with a rollator walker and wondering why is she here and my mom is not), or having a recipe question and realizing I can’t call her. I still have a lot of anger. Why did she wait so long to see a doctor? Why her? Why didn’t the year of chemo save her? Hospice counselor has been very helpful, but grief is a process and for me, losing my mom is hole that can never be filled. I am in the final stages now of selling her home (my childhood home) and all of its memories. In some ways this brings me some closure, a finality to it all. I have placed some of her furniture in my home and it gives me comfort. My mother died in my home on hospice and I cannot bear the thought of being there for the 1 yr anniversary. Instead, I will be on a beach in Mexico, honoring her in my own way, while trying to make a better memory and some peace in 2013.