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Ups and downs


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It's been a very long time since I have posted here.

I just got back home to school/work after spending 7 weeks in Texas with my mom.

Things were horrible. From February to May, I had been led to believe that everything with mom was OK. Boy was I shocked when I saw her.

I can't even explain the sadness I saw in her eyes. She was giving up, I could tell. She said so, too. She was tired, she didn't want to fight anymore. She never wanted me to see her this way.

Over the course of the first three weeks I was home, mom lost about 20 pounds. She wouldn't eat. She said it hurt too bad from the radiation. I kept calling the doctors. They kept telling me it was normal, and they kept prescribing medication that didn't work.

Finally, I made her push up her 1 month follow-up after radiation and chemo. She was sick the entire 45-minute drive to the radiologist's office. It hurt me so much to see her like that.

I had noticed that mom became sort of a mute when it came to describing what she felt, especially to the doctors. So I began to keep typed lists of problems, side effects, whatever I noticed. I gave it to her radiologist. He read it, put it in her file, called her oncologist and admitted her to the hospital.

She cried and cried and cried. The dr kept asking why she didn't tell them just how bad things were. She had no excuse. She just didn't care anymore.

Mom's esophagus was nearly closed due to the radiation. It was causing everything she ate, even liquid to build up and eventually come up because the food couldn't pass through the esophagus. She had minor surgery to expand it. We just have to keep an eye on it, because it can close back up again.

After 2 1/2 weeks in the hospital, mom came home. She had to have TNP at home and the family was in charge of changing her IV bag everyday. She was so scared of us even doing anything near her portacath, but we did what we had to do.

It took about a month for her esophagus to start feeling better again. Even now she has some problems swallowing food. But she's better.

Every day is a different day. Some days she's up and some days she's down.

I'm taking a semester off to go stay at home with mom and the family. I don't know how I'm going to make it financially, but I don't want to ever regret not spending time with my mom.

It's been almost one year since my mom was diagnosed with adenocarcinoma Stage 3B, yet it seems like a hellish eternity.

I don't know what to do anymore. I don't know what to say to make her feel better or want to keep trying. I suppose the best thing to do is just follow my heart.


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Minnie, yes, follow your heart. It has served you well thus far in taking care of your mom. I have said many times that the patient needs an advocate, and I still stand by that. Your scenario supports that. It is super that you are willing to do that for your mom. The patient is often too weak and too drugged to fight the system, so they need someone to represent them, ask the right questions, push on the system for what he or she needs. Also, your mom is of the generation, I'm guessing, who never question the doctor or the medical profession and just go along with what is given. So much the more, they need an advocate. I hope things continue to turn around for your mom and for you. Blessings. Don

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Dear Minnie,

My heart was aching for you and your mom after reading your post. Please do follow your heart at this time so that you will not have regrets later on. It sounds as if you were a much-needed help to her, even though as a parent I understand her wish to protect you from the worst of the world's realities.... I'll be praying for you. Take care of yourself, as well and don't forget to come here for support and a place to let go.

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