update on my mil

[Carruth]

My mil came home from the latest stay in the hospital (another ten days) this past Sunday. She had a staph infection in her blood and pneumonia again. Or maybe it never went away from the last hospitalization. She is now in the nadir of the fourth chemo treatment. Since beginning vidaza in March she’s lost about 24 pounds and is weaker than ever. The doctor wants to do one more treatment then do a bone marrow biopsy. He says she has no blasts in her blood,, which is very good news. However, she’s hardly eating anything–down to 112 lbs–and can barely take care of herself. My brother-in-law finally conceded that we needed help in the house with her, but my mil is insistent that she can “take care of herself”. She really got mad at us when we tried to convince her to have someone in a few hours a day. The doctor even told her she could not be alone because of the risk of falling with the low platelets.

It’s hard for her to let go and give the responsibility to others. If she does have a good response, hopefully she’ll get some strength and energy. It’s hard to imagine her getting weaker but continuing chemo because the numbers are better. Has anyone had this experience? The numbers in black and white are somewhat better (counts, blasts, etc.) but the person is practically bedridden?

We are close to that time when a response is expected, so we still have hope, but it is agonizing watching her be so sick and miserable.

I’d appreciate advice/encouragement based on similar experiences.

Thanks,
Carruth

[MNladyslipper]

Carruth,
I just finished a good book, called – Ninety Minutes in Heaven. It tells the story of a minister who was declared dead by paramedics. He went to heaven and then returned to earth ninety minutes later. In his book he talks of his long struggle to recovery. At first he doesn’t allow anyone to help, but after he is counseled by another minister and admonished for not letting others help, he relents and seeks help. The message is that friends and family want to help. They want to do things for you and if we don’t let them, then they are robbed of that joy of being able to help. It is not quite the same situation as your MIL but you might find help from the book. Maybe, she is opposed to having a stranger, how about a group from her church or neighbors who would be willing to come in and be with her a few hours a day? Just some ideas hope it helps.
Bev

[camiboxer]

I always follow the motto of “Treat the patient NOT the numbers” (blood work, test results etc…).

At this point she needs some type of nourishment to gain strength. That would be my number one priority if it were my dad. Good results can make one feel better emotionally but if the body isn’t reacting like it should with the good numbers then the numbers mean nothing (on a personal level–if that makes sense?).

Are there any type of high calorie drinks/meals that she might be tempted to try? I know there are a few out there but I can only come up with Ensure at this particular moment. Of course run anything “new” past her docs before attempting.

I hope she rounds this corner soon.

[Carruth]

I’ve heard of the book you mentioned, Bev. I want to read it. I think she’s having trouble believing how bad off she is, if that is possible. She keeps thinking that “any day now I’ll be better.” The attitude is great, but physically it just hasn’t happened. She hasn’t been part of a church for years, and all the friends from our church work or are caring for their own parents. It’s almost to the point where she needs nursing care. Her sons can’t get in the shower with her, or do personal things, if you know what I mean. I’m having some medical issues myself and have had lots of appointments, etc. I’m a teacher, so I go back to school soon.
We’ve been able to spread out driving her to chemo and blood work appts, but the personal care is another matter. Everyone she knows works or is elderly and/or having serious medical problems as well.

About the Ensure/Boost, she won’t drink them because she says they are too sweet. She’s eating very little, and frowns at most any suggestion. I agree with “treat the patient not the numbers”, but the doctor is going by the numbers. Not that they are that good anyway! He just keeps saying this is all normal. I think he should have to spend a few days in the trenches!

Don’t get me wrong, he’s a wonderful doctor. I just wish he could see the day to day struggles she goes through. I’ve read many experiences where the doctor stopped the chemo because of fewer complications. Hopefully she will round this corner soon and it will all have been worth it for her.

Thanks to both of you. I’ll keep you posted.

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