An answer found to my mother's post chemo vision disturbance. Not good

wendybill

Today they did an MRI and found four new small stokes that have caused the issues. Neuro indicated that cancer can thicken the blood. From what I read chemo can also cause issues. So here we are. They do not know if her vision will return. She says she can't see well enough to walk safely or even change her colostomy bag. This whole thing has been horrific. I am beside myself to know what to do now in terms of where she goes post discharge. Again--- she is only 61. This totally and completely sucks. I haven't talked to her yet... Just terrible. I wonder if chemo is contraindicated now.

Wendy

Barbara53

health care proxy
Oh, Wendy, this is a mess. Do you have health care proxy? If so, I would ask hard questions before voting to keep going with chemo. It just doesn't seem right to keep heaping things on your poor mama.

I don't think there's a significant risk of stroke type events with chemo. But as with many types of advanced diseases, strokes are part of the package.

In terms of where to go, I think that stroke patients routinely go to a rehab center to see how much ground they can regain, which is often a lot.

Hold on. Things will get better.

wendybill

Barbara53 said:

health care proxy
Oh, Wendy, this is a mess. Do you have health care proxy? If so, I would ask hard questions before voting to keep going with chemo. It just doesn't seem right to keep heaping things on your poor mama.

I don't think there's a significant risk of stroke type events with chemo. But as with many types of advanced diseases, strokes are part of the package.

In terms of where to go, I think that stroke patients routinely go to a rehab center to see how much ground they can regain, which is often a lot.

Hold on. Things will get better.

Health care proxy
I do not have health care proxy. My dad does and he would keep Terri Shiavo alive. I spoke with my mom tonight. She wants to return home this weekend with as many services as we can line up. I think she is finally rebounding from the chemo tx and us ready to get the heck out of the hospital tomorrow. We will see what the oncologist says tomorrow when she rounds. Ugh.

lenjam

wendybill said:

Health care proxy
I do not have health care proxy. My dad does and he would keep Terri Shiavo alive. I spoke with my mom tonight. She wants to return home this weekend with as many services as we can line up. I think she is finally rebounding from the chemo tx and us ready to get the heck out of the hospital tomorrow. We will see what the oncologist says tomorrow when she rounds. Ugh.

Sorry
Your mom can't catch a break. Sorry you have another issue to deal with. It just
doesn't seem fair. Keep us posted.

Barbara53

wendybill said:

Health care proxy
I do not have health care proxy. My dad does and he would keep Terri Shiavo alive. I spoke with my mom tonight. She wants to return home this weekend with as many services as we can line up. I think she is finally rebounding from the chemo tx and us ready to get the heck out of the hospital tomorrow. We will see what the oncologist says tomorrow when she rounds. Ugh.

me neither
Oddly enough, I don't have health care proxy either. My older brother is number one, middle brother is number two. In a way I'm happy to be removed, and I'm confident that they would listen to me should a situation develop where Mom could not call her own shots.

And there we are at the crux of the matter. Our strong mothers are still able to make their own decisions. I have dissented before, but mostly I've learned that we just have to trust this process and go with the flow. Besides, the first law of the land should you become a surrogate decision-maker is: If Mom could decide for herself, what would she choose? Bet you know the answer, so lighten up on yourself.

One question. Can your parents afford to fly in your brother again for comic relief? My brothers vary with what they're good at, but once you find what he's good at, maybe he can be of some help after all. For ex., the greatest thing about my middle brother is that he will take Mom out on a damn fine date. Not fair that he gets the fun stuff while I'm helping collect urine, but it's what Mom needs more than anything sometimes.

msfanciful

Oh Wendy,
This is just awful
Oh Wendy,

This is just awful that your mother has to deal with all of this.

Has she started to even speak about all of this with you are anyone?

I hope and pray that things turn around.

Sharon

wendybill

msfanciful said:

Oh Wendy,
This is just awful
Oh Wendy,

This is just awful that your mother has to deal with all of this.

Has she started to even speak about all of this with you are anyone?

I hope and pray that things turn around.

Sharon

thanks for asking Sharon
She is pretty "shut down" at this point about the entire thing. She is not getting out of her hospital bed except to go to the bathroom. She seems very depressed and pushed past her limits of coping. I just called her room a few minutes ago and she told me to call her back later because she had asked for a pain pill and it was kicking in. She is reportedly going to be discharged home tomorrow. I am trying to let the cards fall as they may instead of rushing up there to rescue again. On top of everything, she missed her wig appt because of going into the hospital and now her hair is starting to fall out. So---I'm here in NC feeling pretty darn depressed, too.

Barbara53

wendybill said:

thanks for asking Sharon
She is pretty "shut down" at this point about the entire thing. She is not getting out of her hospital bed except to go to the bathroom. She seems very depressed and pushed past her limits of coping. I just called her room a few minutes ago and she told me to call her back later because she had asked for a pain pill and it was kicking in. She is reportedly going to be discharged home tomorrow. I am trying to let the cards fall as they may instead of rushing up there to rescue again. On top of everything, she missed her wig appt because of going into the hospital and now her hair is starting to fall out. So---I'm here in NC feeling pretty darn depressed, too.

sleep caps
My mother loved the little lace-trimmed sleep caps they have at Headcovers.com. She never wore her wig around the house, mostly those little caps because they were so comfortable. I think we ended up buying them in several colors.

Hissy_Fitz

Wendy, I hope your mom
Wendy, I hope your mom improves enough to continue the chemo. It really is her best shot, and at her age, it would be a shame to throw in the towel.

I know all this is overwhelming but remember - it's not over til it's over.

Is there a rehab facility where your mom could recuperate? Or maybe she can manage with home health aids? Insurance will generally pay for either of those.

If your mom is really, really upset about the hair thing, then that's a good sign. Just get her some of the little stretchy "sleep caps". They are much more practical for people who are bedridden anyway, and much more comfy. If she has neuro issues, she may not be able to wear a wig yet. After several hours, they can really begin to feel like you have a tight stocking on your head.

Carlene

kayandok

Oh Wendy,
I'm so sorry. I am praying for your mom and you today.
Hugs,
kathleen❤