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Advanced Stage Bladder Cancer

4 days 3 hours ago #58651 by tlwjaw
You are strong and you will get through all that God throws your way. He never gives us more than we can handle. I know it's hard to believe that now, there are times I question it too. Holidays I am sure will be our worst. At least you have your husband and kids to focus on. I don't even want to put a tree up. Jeff bought us a beautiful new tree last year and I just don't know if I can bring myself to put it up. Would really just like to curl up in a ball and hibernate til it's all over.
Today marks one year since this nightmare began. Never in my wildest dreams would I have thought things would turn out like this. It's going to be a rough day for sure. Then I will have all the other mile stones of this disaster coming at me one by one.
I just learned that my cousin who lives in Nebraska whose granddaughter was born with a birth defect 5 yrs ago is now in hospice care. Little Maci's kidneys have shut down basically and it's just a matter of time. Poor little girl wasn't suppose to not live long after she was born but she defied the odds. Although she never had a normal child's life she is deeply loved. Things like that make me appreciate things just a little differently.
Looking forward to going to Florida next week. I need that break. My boys are good sons but they aren't like a daughter. Whitney, as rotten as she was growing up, has turned into an amazing woman, wife and mother. She already called to needing a grocery list from me since I am doing most of the cooking for Thanksgiving. LOL.
Guess we both will just have to plug along through the holidays and make the best of it, it not for ourselves, but for our families.
I appreciate your friendship as not too many people can fully understand what we have and are going through. I wish my Mom were here so I could just go see her and cry on her shoulder and have her tell me it will be okay. Somehow she had a way of making it all better. But instead she and Jeff are spending time together.
I look forward to hearing from you and continue to pray all goes well with the tests on your Dad.
Take Care,
Tammy

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1 week 2 days ago #58613 by snickted
I hope you are able to enjoy the holidays...and yes, this cold winter weather stinks! I'm in Nebraska so we are close. In fact, I've driven thru Gaitlensburg (spelling?) many a times driving to Ohio to see my mom's family...I hate that drive :) Florida will be a nice change of scenery.
My uncle keeps suggesting I go talk to someone...I don't know if I'm ready. I started to reupholster my dining room chairs, the ones my mom kept putting off helping with b/c she said it would be too hard and it's hard! My hands hurt and I was having a tough time and lost it thinking about how she was supposed to be there to help me. My husband told me to take a break and leave it for the next day. She was always the one that helped me, the one that was creative and took the lead when I was struggling. I'm sure my lesson is to learn to stand on my own two feet but I want her here to help and tell me I'm doing it wrong. I used to get so mad when she would say that but I would give anything to hear it again.
I keep replaying the 2 weeks before she passed in my head...wondering why she couldn't have said she would miss us or to make sure we do this or that. It was nothing. I need to let that go but I can't help but wish she would have been more interactive with us. I read an article that Keytruda can basically push the accelerator on tumor growth with people that have a certain gene mutation. Not sure if it's true or not, but I wonder if that happened to my mom. What happened to the 6 months we would get without treatment and maybe 12 months with treatment? How did her tumors double in size within 5 days after her first dose of Keytruda? I know that in the end, we would be where we are now but I can't help but question.
I'll be honest, I'm dreading the holidays. I don't want to have holidays without her. I will put on my game face and do it, but I really just wish it would go away.
I am so happy I was able to help you thru this in some shape or fashion. I know God puts people in our path that will help us and I'm sure we were meant to communicate. I will definitely keep you in the loop about my dad. His appointment is 11/22. I will lose my mind if they find something invasive and requires removal or anything. I don't know if I can do this again, not now. I don't feel like they will but I'm nervous at the same time.
I hope the race goes well...I made myself get out for a long run of 9 miles and it kicked my butt, but it's done, so now I know that 13.1 shouldn't be a problem. I did check out the bladder walks...I wish they had a half marathon. Maybe I will have to find someone here to start it. We have a colon run and all...why not bladder??
Hope you are doing ok and will be able to enjoy the holidays. I think going to Florida is a good move and being around people that love and support you.
Many prayers to you :)
Jennie

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2 weeks 3 hours ago #58593 by tlwjaw
You are never alone sister. Your Mom will always be there for you although now it is in spirit. You may not feel her presence yet but you will, in time. The cemetery will be rough for you but you will be okay. I hate going to the cemetery to "see" my Mom but then I get peace from it afterwards. Her spirit is there with me. I love that your daughter had that dream, that had be a good feeling for her. You and your son will have your moment, trust me it happens.
Keep doing what you are doing, one day at a time. God has your back on this one, I know right now it really doesn't feel like it but he does. You have an angel now watching over you and your family. That alone is a wonderful feeling. Every time I see a cardinal I think it's Jeff coming to visit and say Hello!!
Glad you were able to vent some of that anger/grief out even it was through a note to your Mom's sister. It really does help doesn't it?
I am doing ok, 3 months 11 days out. Looking forward to going to my daughters house in Florida for Thanksgiving and my oldest grandsons birthday, he'll be 13. Doesn't seem possible. But it will be good to get out of the cold Indiana weather. It has just started and I'm already over it. I just need a change of scenery for a little bit. Maybe that will help me think more clearly, who knows.
Please take care of yourself and family. Hope you do great on your run coming up. Thank you for being a friend to me during this difficult time for us both. My counselor told me it was probably the best therapy I could've had during this time, even better than what he could do.
Again keep me posted on your Dad and I pray everything comes out ok for him.
Thanks again and Take Care.
Tammy

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2 weeks 1 day ago #58585 by snickted
I love your pictures! Thank you for sharing. You can tell how much you guys loved each other and how much you miss him. I'm so sorry and wish that I could erase all of this for both of us.
This week, I think it sank in that she's never coming back. I've been in a fog this week. I mean I knew all along that she wasn't coming back but I think the reality set in when she wasn't around to go shopping with me this past weekend. I realized that I had never been to the outlets with anyone other than her...and my friends wanted to go. I made myself go, even though I really didn't want to.
Next week we will hold the cemetery event...is it bad that I don't want to go? I don't want her to leave the house. I want her with us always and not some place I have to drive to go see her.
My mom's sister had the nerve to send a card...so my dad lost it. He was so mad at me for her finding out. I'm sorry that his dad felt he needed to tell. I'm not sure any good comes from any of those situations. I know she sent the card to say - look, I found out. I sent her a not so nice reply telling her that nobody here wants to hear from her. I kinda feel bad that I didn't just keep my mouth shut but I won't lie, it felt good to yell at someone. Even if she wasn't the reason for my pain. Sad, I know.
My daughter said she had a dream about my mom and my mom told her she is ok. I am secretly jealous that I haven't felt her or had her come in a dream. My son said he hasn't had a dream, so at least we are in the same boat. My aunt visit a psychic regularly and thinks I should try to connect with my mom. Not sure what I think about that stuff. I've done it in the past for giggles but I don't know about now. I'd like to believe there is an afterlife but since I've gotten zero signs, I'm questioning it.
I hope you are doing well - and again, I can't thank you enough for sharing your story with me. As much as I wish it hadn't happened for you and Jeff, it's been therapeutic for me. I think knowing I'm not alone in this. Thank you again.

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3 weeks 1 day ago #58546 by tlwjaw
Girl you are doing just fine and everything you are doing, feeling and thinking is normal and exactly like what I went through, am still going through and will be for however long it takes me. Could be the rest of my life who knows but I do know each day is a little better than the day before. Therapy helps a little, the lexapro that my dr put me on helps a lot. Kinda of makes me numb but I feel I need that to get through the upcoming holidays. After that I will try to ween off of that and see how I do.
I love the Ohio State container for her ashes. It's something to make you smile and remember the good times. I gave his remaining ashes to his parents and they have a beautiful vase thing, they got from Gatlinburg where we were married at, to put him in. I understand how hard it is to keep their wishes, Jeff had two children from a previous marriage but had not spoken to in several years. He was adament that I not tell them about anything going on with him and definitely not tell them when he passed. I respected his wishes but his father did not, he told the son. Even then his son never called him while he was sick and dying. He called me the day after Jeff died and I was very short with him. Haven't heard from his since. My kids were there and that is all that matters in the end, that is what made Jeff happy. Our grandkids were the apples of his eyes.
Get yourself well and do your run, it will be good for you for sure!! She would want that!! Check out BCAN.ORG, they do runs every year for bladder cancer and you could do in her memory. I plan to try and do it next year and I by no means run!! lol.
I will keep your Dad in my prayers that his scans will be okay. You are stronger than you think, it's just those bad days that make us question it! Let me know how he does.
I attached pictures of the containers we got for Jeff and a special rooster I found at Tractor supply last week. Couldn't resist.
Please take care and just let yourself go through those emotions ok. Everyone is different so try not to compare yourself to anyone else. Grief is different for all of us.
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3 weeks 1 day ago #58545 by snickted
Thank you for your message and sorry for my late reply...I think I've just shut out the world and focused on doing stuff for my kids and work. I feel like I'm just going thru the motions and still ask why she wasn't able to talk to us more. Why didn't she say good bye? Why haven't I gotten any signs? My husband says I'm too numb and still in shock to get a sign...and even if I did get one, I might not notice. Who knows. He may be right. At times, I forget she's gone and then I feel bad for not being sad. It feels like a no win situation right now. Someone asked if I plan to go to therapy and I said right now I'm doing retail therapy. My kids have pretty much gotten everything they've asked for...God, help me on that one :) I've bought more boots than one person needs. I have a race in Vegas next month and I've been trying to run as much as possible (this cold is still kicking my butt). So I know it's available, but this has been my coping mechanism for now.
My mom has an Ohio State container for her ashes. Just makes me laugh when I see it. Although I was surprised at how little it weighed. It came home on Saturday and it broke my heart. My dad emailed me from her account and it stopped me in my tracks...then he started texting me from her phone old pictures she had...I told him he needed to warn me. Totally freaked me out. My mom has a sister that she doesn't consider family and her last wish was that the sister wasn't notified...one of my cousin's ruined that. I feel horrible but I'm sure in heaven they don't hold those grudges. I've jokingly said she's probably going to trip me while I'm walking ...I feel bad and I feel bad I can't tell her or apologize. I feel lost as I'm sure you can relate.
My dad has his scan on November 22nd...God help me if it comes back with anything. I don't think I can mentally take much more of this. I am praying it's clear.
I can't thank you enough for messaging me thru this...I truly hate that anyone can relate but at the same time, I feel blessed that we can communicate and share experiences.
Happy Halloween...and I hope you get to enjoy your grandkids and their costumes. It's a cold one here and I dread walking in this weather but my kids seem perfectly content :)

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