I really need your help!

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cptv8ing
cptv8ing Member Posts: 24
edited March 2014 in Ovarian Cancer #1
My name is Melanie and I just found this board today. I've been looking for something like this for almost 3 years, never thought to look here! That's chemo brain for you! I am stage IV teal warrior. As I have read through your stories I see a piece of me in each of you and I feel like I've known you all forever. I just finished my last treatment of gemzar/carbo for my first recurrence since I was diagnosed in June 2007. My husband died in a car accident a month after my diagnosis and we (me and 3 children) have been in the cancer whirlwind ever since. I am working on making a lot of memories for me and my children and am wondering if you ladies could help me think of some ideas for short trips and excursions we could do this summer/year. I already have Disney World as one, if all goes well. Please keep in mind I am now a single parent on disability with limited resources so I have to be creative. I live in KS but can travel within reason. I've thought about visiting a haunted house overnight, historical sites, anything! However I am at a roadblock and need your input. My recurrence was ascites with no visible cause so I don't know how long this remission will be. Also if you know of any cancer resource organizations that are in my area that could help please let me know. Time is of the essence and your help is greatly appreciated!

Melanie

Melanie

Comments

  • kayandok
    kayandok Member Posts: 1,202 Member
    #2
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    Welcome Melanie!
    I'm glad you found this board but so sorry about all that you have been through.

    I live in Japan and also have three kids, with limited resources, and have been pondering this question too, for myself. I saw a show one time on the journey of a gal who had stage 4 cancer. She tried to do many things, including making videos etc for her kids. After she died, they interviewed her daughter (maybe 10 years old) and asked her what her best memory of her mom was. Her answer was, "Eating cheerios together." The interviewer was obviously surprised, given all her mom had done, especially after her diagnosis to make memories with her family. The little girl went on to explain that when her mom didn't feel well, she would just eat cheerios. Many times they would eat cheerios together, in her mom's bed. It seemed that it was that "time" they had together, that was so special, not the cheerios or any particular event that happened.

    How old are your kids? Do they like the outdoors? Disney World sounds wonderful! I would say, the beach, pool, camping, a lake, picnics, even walks together. I think the key word is "together". If they are young, even camping in the back yard, or living room can be very exciting. (I think it is really important too, to take lot's of pictures of happy times.) Some of the best times I have had with my kids are at the beach making sand castles and looking for shells, hiking through the woods, and having bbq's on the deck. We grill everything from tofu to smores, and everyone is always welcome. It is crazy, but lot's of fun!

    Wishing you a long long long remission!
    kathleen
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #3
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    Welcome
    Dear Melanie, welcome to the board, I am so glad you found your way here. No suggestions for you at this time but may be back. My deepest sympathies for all you have had to go through since diagnosis. Hugs ♥ Prayers Bonnie
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #4
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    oh, Melanie!
    Your story brought tears to my eyes...along with Kathleen's response. I cannot imagine what you are going through. I am have 3 kids as well...the younger two are 6 and 4 (soon to be 5!). I am 43yrs old with stage IV and battling a recurrence. I have made videos for my kids for significant birthdays 13, 16, 18, 21. High school graduation, wedding day, birth of a child. I also did just general advice video. Once special video I did was talking to my kids frankly about my diagnosis and how it effected us, my fears and my tears. That one I want to save until they are older. But it was a way to share my feelings with them on an adult level. I made memory books for them. I wrote letters to them and also did some journaling. I bought on amazon.com some journal books like "Mommy, tell me one more story" that book is a fill in with prompted questions about yourself and growing up. Another book I bought from amazon is a fill in book with prompted questions about the child. I've been working on these projects over the past several months. It was important for me to do it while I was looking and feeling good. I don't want my legacy video to have my bald and looking weak. Over the summer, as I grew my hair back, I started redoing the videos.

    I agree with what Kathleen said. Don't think trips or events are the answer. It is the simple things that mean the most. I just hope my kids memory of me is not how I am always yelling that the house is too messy!! LOL!! We did Disney in Oct.'09 and Myrtle Beach Aug. '09. My kids now have very little memory of these trip! Funny what you remember. Did you ever read the stories on ovariancancer.org? There is one story on there written by now the adult daughter of a women who died of ovca while she was fairly young. She talks about how her memories are fading and what she cannot remember. But one memory she has is of her and her mom eating Raman Noodles on the days after her chemo. That story is a tear jerker for sure. My biggest fear is that my kids won't remember me and how dearly I love them.

    Good luck Melanie and please keep in touch. So many times women will post once or twice on here and then disappear. I often wonder about those women.
  • cptv8ing
    cptv8ing Member Posts: 24
    #5
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    nancy591 said:

    oh, Melanie!
    Your story brought tears to my eyes...along with Kathleen's response. I cannot imagine what you are going through. I am have 3 kids as well...the younger two are 6 and 4 (soon to be 5!). I am 43yrs old with stage IV and battling a recurrence. I have made videos for my kids for significant birthdays 13, 16, 18, 21. High school graduation, wedding day, birth of a child. I also did just general advice video. Once special video I did was talking to my kids frankly about my diagnosis and how it effected us, my fears and my tears. That one I want to save until they are older. But it was a way to share my feelings with them on an adult level. I made memory books for them. I wrote letters to them and also did some journaling. I bought on amazon.com some journal books like "Mommy, tell me one more story" that book is a fill in with prompted questions about yourself and growing up. Another book I bought from amazon is a fill in book with prompted questions about the child. I've been working on these projects over the past several months. It was important for me to do it while I was looking and feeling good. I don't want my legacy video to have my bald and looking weak. Over the summer, as I grew my hair back, I started redoing the videos.

    I agree with what Kathleen said. Don't think trips or events are the answer. It is the simple things that mean the most. I just hope my kids memory of me is not how I am always yelling that the house is too messy!! LOL!! We did Disney in Oct.'09 and Myrtle Beach Aug. '09. My kids now have very little memory of these trip! Funny what you remember. Did you ever read the stories on ovariancancer.org? There is one story on there written by now the adult daughter of a women who died of ovca while she was fairly young. She talks about how her memories are fading and what she cannot remember. But one memory she has is of her and her mom eating Raman Noodles on the days after her chemo. That story is a tear jerker for sure. My biggest fear is that my kids won't remember me and how dearly I love them.

    Good luck Melanie and please keep in touch. So many times women will post once or twice on here and then disappear. I often wonder about those women.

    No worries of me
    No worries of me disappearing. I will stay on here posting as much as I can but time is an issue with 3 kids, I don't have to tell you that. I am doing memory boxes and want to do videos but I still can't manage without crying so they will have to wait. I found a site that will continue to do something for your children that you would have done if you were there and I am thinking of having them send cards to each of my children on their birthdays. I can't think of the site off but I will post a link to it and you ladies might utilize it as well. In the mean time I am going to try and volunteer to help them. Seems highly worthwhile. I just got off the phone with a man named Myron Cramer who is a photographer and does family photos for people who are terminally ill. His program is called Photos of Love and he is coming Sunday to take family portraits of us free of charge. I thought that was the greatest thing ever. I am usually not in the pic because I am taking it. Well, just heard I have a flooding bathroom so I will be back later.

    Melanie
  • Unknown
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  • Lisa13Q
    Lisa13Q Member Posts: 677
    #7
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    HI Melanie
    Granted I'm older, but the memories I will have of my mother have nothing to do with any trips we took. In fact, those were always so stressful. I will remember her yelling at me because I am the worst decorator in the world. I will remember her finding me eating her oreos at midnight that she had hidden from me and I found...the look on her face was priceless. truly. Finally, I will always remember her valiant fight in the face of such an atrocious disease and her love for her children, who she wanted to spend so much more time with. I would say if these little trips are going to strap already limited resources.....ice cream and cookie night is an idea...every friday night...I don't know....it's those times that matter.....just my thoughts. So sorry you are dealing with this disease.
  • msfanciful
    msfanciful Member Posts: 559
    #8
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    Hello Melanie,
    I am so glad
    Hello Melanie,

    I am so glad you found this board. I am also so sorry that you've experienced so much (the loss of your husband) I just can't imagine the depth of your pain.

    This board has been a Godsend for me and I know you will receive answers/prayers/etc galore.

    Although I don't have little ones. I think videographies especially impromptu ones are always a winner.

    All of your ideas are great . One of my recent trips was of the grand canyon. In all of my 53 years I've never been to the grand canyon and I reside in Texas!

    Nevertheless I will keep you and your family in my prayers and will send additional ideas as they come along to you okay?

    Stay strong and yes make each day a wonderfully new day and positive experience.

    Sharon

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