Heavy heart tonight....

kaunderw

I'm usually a lurker but have learned so much from visiting this board. My mom was diagnosed with IBC last summer. After some initial success with Taxol/Avastin, she moved on to Doxil (didn't work) and Xeloda (didn't work, horrible side effects). She's now presented with neurological symptoms (stumbling, fatigue, trouble finding words and completing sentences, etc.) - and goes for a brain scan tomorrow. I'm hoping it is a side effect of the Xeloda but my heart is breaking. She's so upset with herself especially with her speech. It is so hard to hear her like this and see her so discouraged. Up until this past few weeks, she's been so confident in her doctor and the treatments.

I'm far away and they've asked me not to come right now...to wait and see what the test results show...and I will respect their wishes although every bone in my body wants to get on that plane...

I feel somewhat better after having vented here. I will pray for you all and your loved ones who are on this journey.

VickiTN

I'm so sorry to hear about your mother. I'm sure it must be so difficult for you to be so far away from her right now.

I can understand how torn you must feel right now about respecting her wishes or jumping on a plane. I'm not sure what I'd do if I were in your situation.

I'm sending prayers up for your mom - praying that her symptoms are just side effects and that she'll begin recovering soon. And, I'm sending prayers of comfort out for you.

Please keep us posted about your mom.

hugs,
vicki

csp

Hi lostyankee,
I am sorry you had to come back with such difficult news.
Hopefully this is all due to the meds and she will regain
her speach and balance back the further out she is.
I am praying for the best possible results on her scans
and holding your hand in cyber space as you wait for the results.

Hugs,
Carrie

kaunderw

Mom had her brain scan this morning. Mets to the brain stem. She sees a radiologist next Tuesday and is now on heavy doses of steroids to reduce the swelling. Mom and Dad (each 69) are both in shock but determined to fight. Just called my brothers to deliver this update - it's hard to be the oldest sibling but I didn't want my Dad to have to recount the whole story two more times.

I feel empty inside - probably from all the tears. This disease (I call it the BEAST) is just so unfair. I am so glad we all got to vacation together this summer and make some joyous memories.

Struggling with how I can help out and "be there" and still take care of my husband/son. I've called/emailed every day since she was diagnosed but it just doesn't seem like enough. Any suggestions on how you all have made a difference, showed your love and concern, helped everyone cope?

Deep sigh. I will keep you all in my prayers and welcome all that you can direct our way.

Kathy (aka LostYankee)

PJB

Kathy, I'm so sorry to hear of your mom's situation. Sounds like her team is on top of things and getting her help quickly. I hope the rads blast that nasty stuff to oblivion. Prayers and cyberhugs heading your way for you and all your family.

Paula

hmphillips

Prayers and cyber hugs to you and your family. I am living with my mom right now and do not know what I would do If I was in your situation. I think I would talk it over with my husband and see if there was some kind of compromise we could do that would be ok with all involved. My husband has been my best support since all this began. Use it.

Anonymous

(((((lostyankee)))))

I'm sorry to hear about this...gentle hugs to you and your mom sweetie!

Peggy

kaunderw

Thank you all for your prayers and replies. The steroids have cleared up most of the neurological symptoms so Mom is feeling better. SIL and my nephews went to visit yesterday and my parents enjoyed the company - especially their grandkids!

My hubby works shift and has a scheduled week off shortly so I'll head up there then. I was upset when he went back to shift work last year but it has afforded me lots of opportunities to travel to NJ while knowing my 11 year old son is in the very capable hands of my hubby.

I will keep you all in my prayers

Kathy