(no subject)

[stakebait]

I am home. Mom is... jittery. The decision on the chemo is bothering her, not so much the chemo itself as what it implies. Just how high risk is she, just how much of this stuff -- so strong that if they miss the vein it can burn your skin until you need a graft -- should she have pumped into her blood?

Some kind of chemo is pretty much a given. The question is which drugs -- CMF, AC, or some kind of clinical trial that would let her substitute Taxol, maybe, (for one) and add Taxol and mayber Herceptin to AC for the other. And for how long -- four weeks or six, or a whole year, on the trial she's not sure she qualifies for. Could she add Taxol without a trial? Should she? There aren't any clear answers. We stayed up late researching and printing articles and arguing about what they do or don't mean. It's a gray area, a judgement call, and some of the answers we want they don't have, because the trials aren't done yet.

But the subtext to all of this is fear. Not an unreasonable fear, or an exaggerated fear, but the real, rational fear of "I could die from this." It confused me at first because I don't think we have any new information, really, but of course it doesn't have to be new, it just has to be brought home to her, and that's what's happening. So her voice gets tight and her toe taps and she insists with great vigor on things that really don't make any difference to her decision or the interpretation of some study, because they speak to her emotional point, which is Accck!

And along with that is the fear that we'll guess wrong. She wants the choice to be obvious, unambiguous, guaranteed. She doesn't want to have to pick one and live with the nagging sense that she should have picked the other, had one more test, read one more article. But that's how it is.

I'm not really trying to make her unafraid at this point, though I do try to head her off when fear is leading her into worst-case readings. Mostly I'm just trying to make sure the tail doesn't wag the dog. We don't want to eliminate treatment options because she doesn't want to need that much treatment. I don't want her to need that much treatment either, but if she does need it I want her to have it.

I would sort of like to say "if there's even a chance I want her to have it", but that doesn't work either, because the side effects can be worse than the disease.

Mer

Comments

[ngaio]

I have no advice and can't do anything but be here but that I can do and so I'm here.

::hugs::

[stakebait.livejournal.com]

*hugs*

Thanks!

[eac.livejournal.com]

Still listening and sending good thoughts for you and your mom.

[stakebait.livejournal.com]

Thank you!

[rainkatt.livejournal.com]

This may sound weird, but can you get her away from the whole thing for a couple of days? (I pulled a couple of runes, which I'll go into over email, if you want, but I don't want to hijack this post.) A break is needed (and I do understand the urgency and the need to make a decision), and I think it'll help both of you focus better. I think a lot of how things go is going to depend on her state of mind, no matter which course she chooses, and she's about at the end of her rope, which isn't surprising. You'll know what the right thing is.

Hugs and good wishes going your way.

[buxom-bey.livejournal.com]

Reading or no, that sounds like an excellant idea.

[stakebait.livejournal.com]

I can try, but I doubt away will be happening. She might take a break during the week while I'm at work.

[rainkatt.livejournal.com]

She seems pretty grounded, from what you've said... she probably just needs reminding that she doesn't have to do it all this minute. Maybe just going somewhere outside to sit and do nothing would be enough of a break, or somehow just take a break from the expected... you'll know, she'll know. And. You know her and the situation really well, and I don't, so if you think I'm nuts, that's really OK. Still sending you great big hugs and all the support I can manage.

[stakebait.livejournal.com]

*hugs* Thanks!

[sdelmonte]

I am sort of surprised your mother needs chemo, as it sounds like the tests wwere better than the ones that came back when my mother had her cancer. She didn't get chemo back then. She was placed on hormone therapy, which essentially served as a brake on the disease (though every so often there would be very small and manageable hints that something was brewing). She ultimately got chemo, but as an experiment to see if chemo would knock out the cancer cells once and for all. ((I don't know if this worked or not, but when she was presented with the choice, shre was told that she didn't need the chemo to live, only to extend and simplify life further.)

All that said, I know that the thinking on chemo and on hormone therapy in cases of timely surgery and as a prophylactic is always shifting. It might make a difference what is recommnded as well due to your mother's age. I assume given your age and from what I recall of her that she's in her mid-50s. My mother was 47 and pre-menopausal when she had her surgery, so if your mother is past menopause, that could alter the treatments.

I wish I knew more. Certainly, though, I think that you and your mother should take advantage of the full resources available through the hospital. It's great that patients are given choices rather than just being told "you do This!" But deferring to the knowledge of a doctor, and seeking a second opinion are also choices. I think you can trust the doctors on this.

Beyond which, I hope that your mother has contacted the American Cancer Society about being part of the "Reach to Recovery" program, where trained volunteers who are also breast cancer survivors help people like your mother cope. Talking to women who have been there, who have made the choices your mother faces, could help. (I believe they also offer some counseling for families.) Here's their web page:

http://www.cancer.org/docroot/ESN/content/ESN_3_1x_Reach_to_Recovery_5.asp?sitearea=SHR

I hope this helps you and your mother make the decision with confidence.

[stakebait.livejournal.com]

Thanks a million!

My mom's cancer is not hormone-responsive, so the tamoxifen type drugs are not an option for her. It's chemo or nothing.

The good news for her is the small tumor, no lymph nodes, no vascular invasion. The bad news is everything else -- not estrogen or progesterone receptive, strongly (3+) Her2Neu gene overexpressive, poorly defined. She's in what they call the "high risk node negative" group. Getting her not to freak out about that "high risk" too much is what this week is all about.

I've mentioned Reach to Recovery to mom a bunch of times. I'll mention it again, but she seems kind of reluctant to do it, or at least to do it yet.

[valancy.livejournal.com]

the whole thing is exhausting. *hugs* I'll try and send some good vibes your way.

[stakebait.livejournal.com]

*hugs* Thanks. Just for fun, my back pain has come back. Just in case I'd missed the memo that it was stress related.

Mer

[rhi]

{{{hugs}}} Which is all I can do, other than send good wishes, which I'll continue to do.

[stakebait.livejournal.com]

*hugs* Thanks.

[barking-iguana.livejournal.com]

I wish there was something I could do, other than just silently hope for the best.

Actually, if she is on chemo and is feeling too lousy to run errands, remember I’m only 20 minutes away and often home. I hope she’s got people even close so that’s not needed, but it’s offered eagerly.

[stakebait.livejournal.com]

Thanks! I'll let her know. She's got people, but they may get tired or unavailable at some point.

[thebratqueen.livejournal.com]

[HUGS/goodvibes]

[stakebait.livejournal.com]

Thanks!

[trinker.livejournal.com]

If there is anything I can do for you from this side of the country, please let me know. You've brought me so many hours of enjoyment with your posts in the past, I want to be able to give something back.

[stakebait.livejournal.com]

That's so sweet! I can't think of anything concrete, but just saying that helped a lot. Thank you.

[genarti]

*sends good thoughts*

[stakebait.livejournal.com]

Thanks!

[akkasha.livejournal.com]

I am sorry that your mom is having trouble with this. Though it is pretty natural for her to be wired.

It is harder as there are just so many options and none seem to work for everyone.

If there is anything you need, please just hollar. Just remember the offer if you need something, Paul can drive & such. Or even just needing dinner away from everything. *hugs*

[stakebait.livejournal.com]

Thanks! *hugs*

[ocean-song.livejournal.com]

Just wanted to let you know I'm still reading and praying for her. It seems like things are going well. And the fear, well that's normal, reasonable, and all you can do is breathe through it and do the whole Dune thing. It's awful feeling like any decision you make can be life-threatening, and there's no clear path. I feel that way all the time myself. And I've seen many friends through cancer and AIDS. So... yeah.

I'm touched and impressed at how supportive and present you are able to be for your Mom. You amaze me.

Whenever I light my candles, i do one for her. Take care and don't forget to take time for yourself

[stakebait.livejournal.com]

Thanks!

[boniblithe.livejournal.com]

*hugs*

If you have questions you can't find answers to or find things you don't understand please don't hesitate to drop me a note.

In DC this week I went to a very good seminar on ethics in cancer treatments and how difficult it is to offer trials to such a vulnerable patient population and make them really understand what it is they are signing themselves up for. Everyone admits that they know the response rate is low even in the best trials, but they all also say that they hope that they will be the miracle patient ...

Your mom really is in one of the best geographical places she could be, and has a lot of options that many, many other patients don't have, and her prognosis is darn good. So hang on to that, tight. It means everything.