75 year old mother doing much better

[kimhenson]

Hi everyone,

I hope I didn't offend or scare anyone with my last post. There weren't any replies so I assume I did. I apologize for that. The hardest lesson I've learned since my mother was diagnosed is how easy it is to say the wrong thing with the best of intentions.

I wanted you to know that I visited my mother yesterday and she was up and about, nagging my father and planning a shopping trip today. I decided to post because it's very obvious that the fluid infusions were lifesaving. This is the first time she's eaten dinner at the dining room table in at least 3 weeks.

I spent a long time on the site yesterday reading the posts about your experiences with the T/X side effects. I learned a lot and it helped me understand. My mother's oncs (local and distant) have consulted today and will tell us the new dosages. I assume that they will reduce everything to determine my mother's tolerance (with the hope that she will get stronger). On the down side, she said quite strongly that she felt the lump in her opposite lymph node was getting bigger. She's been off Herceptin for about one month.

My mother was in excellent health before this bombshell. Her MUGAs have all been great (69 on the average). She is extremely sharp. The thing that has been hardest for her has been the age discrimination she's felt (or imagined) during treatment. She has said far too frequently "maybe I HAVE lived long enough!" It is painful to know that she is burdened with that feeling.

Anyway, today is a better day. It is clear to us how vital it is to address the side effects of T/X as much as possible.

Again, please accept my apologies for frightening or offending you.

Kim

[tousled1]

Kim,

I'm certain that you did not offend anyone with your previous post. I'm glad to read that your mother is doing better. I have no experience with T/X so I can't be of much help but do know that your mother is in my prayers. She sounds like she is a real fighter and hopefully this treatment will work.

[Barbara H.]

Hi Kim,
I have not taken this combination so I don't check here that frequently. However, I also have older parents with health issues and can relate to what you are going through. It appears as if your mother may be somewhat depressed or down from what she is going through. She may feel others are telling her what to do, controlling her life and she does not want to give up that control. The mention of hospice seemed like the end to her. My parents are in their eighties and refuse to get cleaning help. They feel much more in control doing things for themselves.

This has nothing to do with you and the care you have been trying to do for your mother. I would suggest that you try to get her into a support group or get some support from a social worker on the staff. If she is unwilling to speak to someone or attend a group, it still might be helpful for you. This disease is also very difficult for care givers, and it might help you to find support for yourself. You are not alone with these issues.

Good luck and best wishes,
Barbara H.

[Lolly]

Kim, I'm so sorry you felt you may have offended or scared anyone here; I'm pretty sure we're all "bomb proof"!

I wonder if your mom isn't partly in denial; that might account for her reluctance to take measures to counteract side effects, and also explain her shock at the mention of hospice...
Denial is a very common state of mind, one we're all too familiar with. A bit of denial can be a good thing, but too much is clearly harmful. Anyway, sounds like she's feeling much better with the hydration, and feeling better will hopefully translate into more willingness to do the necessary things to stay feeling as well as she can.
Hydration is so, so important. Just keep encouraging her, she's very lucky to have you and your sis there to help her through this.

[kimhenson]

Thank you for relieving my mind, Kate, Lolly and Barbara. I was very worried. The last thing I'd ever want to do is upset anyone here. I talked to my mom today and she has decided, after talking to my new sister-in-law (a hospice nurse, as a matter of fact), to get in-home nursing to help her stay hydrated while she is on T/X. She resumed Tykerb on Monday after a four day break and on Tuesday evening, had her first attack of diarrhea. She sounded weak again on the phone.

My sister-in-law says they can insert a PICC (long-term catheter) into her vein so that the fluid infusions will be easier on her. It's getting harder and harder to find a vein. I think my mom will really benefit from competent care vs. the well-intentioned bumbling of my father and I. We love her, but we don't know what we're doing. I am really proud of her for being able to put aside her fear of the word "hospice" and decide to accept the care these wonderful nurses can give her. My sister-in-law is an amazing woman (she lives in Utah and we are in SoCal). If the other hospice nurses are like her, my mother will be in wonderful hands.

One thing my SIL said about hospice--many of her patients end up doing so well with the TLC she gives them that they are able to go off hospice. She said that nearly ALL of her patients improve with the additional care and live much longer.

This is so hard. Thank you for your kindness.

Kim

[tousled1]

Kim,

I'm so glad that your mother agreed to in-home nursing care. Having a PIC line inserted, I feel, would be a good thing as it does away with the strain of finding a good vein when they need it. They are usually inserted using only a local anethesia so your mom should be fine. Hydration is so important with any type of chemo and when you're fatigued and just feeling like crap it's very difficult to intake enough fluid. I will keep your mom in my prayers.