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Advanced Stage Bladder Cancer

4 months 2 weeks ago #58442 by snickted
So a huge change in events...the tumor that spread to her liver attacked her arterial vein and caused massive internal bleeding. She had a procedure done to stop the bleed but she's asked to stop all treatment. She can't take the pain any longer. I am a mess....I don't want this but I want to respect her wishes. She's on such a high amount of pain meds she's unresponsive. Yesterday she could open her eyes but not today. The tumor again doubled in size since her last scan on Monday. How is this possible!??! How can this be happening so fast?? I don't want to say good bye. I want one more more birthday. I don't even know what to expect for this end of life care. Comfort care they call it. Any advice?

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4 months 2 weeks ago #58417 by snickted
oh wow, that is very moving that the kids say and think that. Kids can be so inspirational and they don't even know it :)
I'll be sure to keep you posted and feel free to reach out if you ever need to chat in between.

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4 months 2 weeks ago #58416 by tlwjaw
Thank you for listening to me as well and allowing me to share my experience with someone who is going through a similar situation. It has been very therapeutic for me, the grieving process is just unbearable sometimes. I'll continue to keep you all in my prayers!! And tell the kids heaven is a great place where grandma isn't in pain anymore and she will be their guardian angel forever and always. My grandkids tell me everyday that grandpa is watching over them. It makes me feel a little better to hear that.

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4 months 2 weeks ago #58414 by snickted
Thank you for listening and sharing your experience. I will definitely keep you informed on what's going on. They are taking her off antibiotics today and monitoring for 3-4 days and hopefully moving to rehab facility. Unfortunately, I don't have any siblings and my kiddos are little...they don't understand it fully. My daughter asked who would take care of grandpa if grandma goes to heaven. They have known about grandpa's bladder cancer and breathing problems but grandma getting sick was a shock. My son has been to the school counselor 3 times already because he's so upset at school. He's only in 4th grade. Breaks my heart. We will all survive in some shape or fashion...and we will get used to our new norm. It's just been too fast and feels like no time to catch up. Each corner seems to bring another issue. As far as me, I'm a runner, so that has been my outlet. So far it works...just a matter of finding time.
Thank you again and while we can share our experiences, I really do feel bad that you had to experience this and your family had to lose their father and grandfather. It's so hard.

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4 months 2 weeks ago #58412 by tlwjaw
Man, what you're saying sounds exactly like Jeff. His was High grade urothelial carcinoma, very aggressive as well. They don't like using contrast dye if the kidneys are weak. Chemo and dye affect the creatinine levels, which I'm sure you already know. Jeff had to have a chemo treatment rescheduled for a week later because his level was too high. I truly pray she doesn't go down the same path as Jeff, but if she does just do your best to keep her comfortable and let her know it's okay to go when the time comes. I should have known that last good day Jeff had (3 days before he died) was a sign but instead I had hope that he was going to make it a little longer. Maybe even until his birthday which would be next week or even to see our newest grandson who will be here in December. I was overly hopeful but in my heart I knew it wasn't going to happen. Just glad my daughter got here in time to see him before he left us. I don't know what I would have without my kids and rest of my family. My sister was by side 24/7 it seemed like. She went to dr appts with me to be my second set of ears since she has been a surgery tech forever. I'm an MA in cardiology so oncology is a foreign thing to me and I really wanted no part of it.
Jeff was greatly confused and I attributed it to the meds. Then later I think part of it may have been a stroke.
You will go through many phases, so angry is ok and good to let it out. Keeping it in doesn't do you any good.
I agree no one should have to endure this and I don't understand it either. Don't be afraid to ask the dr for something to help YOU. I had to do that and trust me I needed it, I don't think I would've made it without it to keep my anxiety down. As always, still here for the venting. Let me know how her treatment goes.

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4 months 2 weeks ago #58411 by snickted
yes, it's always been her right side and her back on the right side. So I'm guessing it's the liver and has been all along. I'm guessing the liver spots were there when they did surgery but weren't able to do a contrast scan b/c her kidney functions weren't great. Or so they say. She has squamous cell bladder cancer, which is super rare and very aggressive. (At least that's what we've been told). I worry about how quickly it will spread vs respond to immunotherapy. Time hasn't been a friend to us. In fact, with each scan and test, my stomach turns while we wait. I feel like I could throw up until we know the outcome. Each symptom that is different than her norm, I question. Her heart rate is much higher than normal...she has edema and is weeping now, her head sweats with zero movement and no fever. She tells me I think too much. To stop worrying..HA! Easy for her to say. I'm not ready to lose my mom. I'm not ready for the cancer to take over her body. AND I have no control over any of it. I can't influence anyone or anything. They think we are idiots because we are not health care professionals. I am educated with a masters degree so I can research and make conclusions. My mom is a retired pharmacist so she knows her drugs. Some days she's confused lately and that makes me worry. Again, I'm venting...I think I should get used to days like this and learn to breathe or figure out some way to find peace. Thank you for listening and I'm so sorry you had to go thru this. Nobody should have to endure this much pain...cancer research gets millions each year and this is the best they can do? angry today...sorry.

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