Not doing enough?

[mwhcrew]

My mom's been fighting stage IV nsclc since June, and recently had a setback where they found a brain met had grown. When she was first diagnosed she was very proactive, writing down everything the doctors said, finding out about the meds she was on, etc. However, in my opinion, she didn't start taking steps that she could have such as eating better and exercising, basically taking care of her body to deal with the radiation and chemo. Her doctor said it didn't really matter what she ate, and she has lost a significant amount of weight. All along my family has done a good job of keeping on top of things; my two sisters and I all live far away but my mom's siblings live near her and have been great about taking her to appointments and keeping track of things.

With the recent setback, I have this feeling like no one really knows what's going on. Her radiation dr. wants her to go get a second opinion before doing gamma knife on the brain met, but has said for her to start taking Tarceva. Her oncologist basically said she could go get a second opinion but that she probably shouldn't bother, and doesn't want her to start the chemo. My mom has also gotten very confused, whether from the tumor or chemobrain or the effects of radiation or whatever. In any case, I feel like we're getting close to the whole thing spiraling out of control, with no one really knowing what she is supposed to be doing or what she could be doing.

On top of that, I feel there are a TON of things she could be doing that she's not. I've talked to her about it a lot, and she either gets angry at me or just placates me and says she'll do it tomorrow. She'll eat better tomorrow, or she'll look into support groups tomorrow. I'm just really frustrated because i feel like this is the type of thing where you just can't leave any stone unturned, and we're just breezing past a ton of them.

Any thoughts? Thanks for listening.

[RandyW]

Does anyone go to Moms appointments with her? Second get a second opinion. If Onc says no need for chemo abviously they are giving up the fight already before the Fight started. You need a Oncologist who will fight this aggresively not Hem and haw and be all about do what you want to do. Make sure someone goes with mom to get all info and definitely look into a second opinion. It sounds like the radiologist wants to fight more then the Oncologist to me. Good Luck and let us know what happens. Sending prayers.

[Treebywater]

Gotta be honest here.... Your Mom's dealing with Lung Cancer. Yes, diet and exercise can have positive effects for everybody, and some folks have had really positive results from both while dealing with LC... and I agree with the 'no stone unturned' idea, but... diet and exercise choices are small potatoes right now. I'm sure they seem that way to her. She's likely doing her best just to get through each day with the fatigue and side-effects of treatment. If she's NOT eating then certainly continue to encourage her to do so... And let her know that it's ok to be creative--popcorn or pancakes or ice cream with ensure... whatever works. What she eats though needs to be her choice.

As her daughter your job isn't necessarily to jump start her in all the possible directions, but rather to support the decisions she does make. Definitely, present options to her. But then, let her call the shots and make the choices without nagging her about what she's not doing. Maybe she just doesn't feel like exercising or eating leafy crunchy things. And doing chemo and radiation--from my limited sidelines knowledge--causes a person's appetite to be pretty crazy.

Same goes for support groups. Some just aren't into that sort of thing. That's ok. It doesn't mean that they care any less about getting better, just that it's not their thing.

As for the oncologist situation I would certainly encourage her to go get a second opinion. It sounds like her onc. is twiddling his thumbs and she needs someone to be proactive for her and with her. That *is* something worth bringing her attention to, and advocating for her to go get more information.

I can't imagine how powerless a diagnosis like LC would make me feel--and then how powerless the treatments and what they did to my body would make me feel. I think I'd grasp at ANYTHING that I could CONTROL to make me feel more balanced. Maybe that's what your Mom is doing?

Overall, I guess what I'm saying is pick your battles and let your Mom be the Mom. For the sake of your sanity and for the sake of your relationship with her. It sounds like she's doing the best she can and she's trying to gather all the information she can. That's A LOT!

Prayers for her and for you. She is lucky to have a daughter who is so proactive in looking for options on her side.

[mamasbabygirl]

I second what Val said and although you live far away, I guess I keep thinking back to the old adage "If you want something done right, you gotta do it yourself." Maybe her siblings that live close are doing what they know how (taking her to Dr. visits and supporting her in the day to day things) and aren't even aware of the types of questions they should be asking or how to advocate for her.

This would be a perfect opportunity for you to use your knowledge learned from here and online to advocate for her. You can at least offer to her that you have learned alot about the disease and that you would be willing to write out all of the questions that need to be asked at her appointments. Whoevr is taking her can jot down the answers and give you a full report. It would keep you in the loop, give you a little more control, and let your mom know you care what happens to her. If she accepts, that is...

[Welthy]

I echo Val's and Lori's comments. (Bravo girls!)

You are in a different position from my children. They do not question my husband, because they know I am all over his treatment, weight, etc. like a pit bull. They have no need and I'd be offended if they started nagging either one of us. I keep them completely in the loop though. I've seen this from the other side too, as a daughter. I made suggestions to my Mother, but basically my Father was her primary caregiver, with me as backup.

Who is your Mom's primary caregiver? Is she on her own, except for her siblings? That is a tough nut to crack when you aren't living nearby. You feel like you have no control and in reality, you don't. None of us do, except for the patient, who has limited control. Approach her caregiver with your concerns about the oncologist and her weight loss. Maintaining/gaining weight and staying hydrated is of utmost importance. We've found it is how many calories you can ingest, not necessarily the quality of those calories. Maybe her sibs can begin bringing her something gooey and calorie laden that is a fave of hers on a regular basis.

I too have run into the exercise wall with my husband, but I've finally convinced him that it is in his best interest to try to do a little something to fend off the fatigue. Your Mom is probably sick and tired of being sick and tired. Maybe some depression is setting in? Try and talk to her without nagging -- I know, easier said than done.

Wishing you the best. Let us know how things are coming along for her.

Welthy

[mwhcrew]

Thanks everyone. I know that she has to make her own decisions and that all I can do is try to educate her. It's just hard to be on the sidelines. She's essentially her own primary caregiver, though my family has very open lines of communication (thank God for email). Sometimes it just all seems so entirely futile. Thanks for listening.

[beat it]

Well this post hit home, BIG TIME!!

My MIL Stage 4 NSCLC. I turned into an instant advocate. Requested by family to be there. I have researched, studied and flat lived cancer since the dx. After learning so much from self studies I completely changed my own lifestyle. A FIRM believer in health, excersice and knowledge of this desease. I became incrediably frustrated early on with my families denial of the situation and the seemimgly lack of will on my MIL part to make obvious proven lifestyle changes to help her situation.

I now know (after repeated slams of my own head into the hardest brick wall) that you cant fight another persons cancer. No matter how much you believe in the correct method to fight and your own stamina to fight it, the cancers not yours.

I have had to bite my tounge and reserve comment so often. Each person is different with different strenghs,weaknesses, fears and abilities. I cant fight her cancer for her. I can only offer the sincerest heart felt advice and compasion. I have to respect her desicions and abilities.

I think most of the frustration is due to the degree in which we love our person with cancer. Our own selfish desire to have them beat it and live to stay here with us.

You as I may have to settle that battle with in yourself. Then you can go forward and help.

I wish you the best. I unsderstand COMPLETLEY.

Beat it!!