(no subject)

[stakebait]

We met the Sloane Kettering surgeon yesterday. Vastly more competant, reassuring, informative, kinder, more responsive, and generally Better. We shall be going there, no question.

Mom has a 15 percent chance of nodal involvement. Since the false negative rate of the sentinel node procedure is about 5%, and 5% of 15% is less than 1%, we're going with that. If the frozen second is positive, he'll go for axillary node and take 'em out. If it's not but the more detailed analysis is, they'll decide together whether to go back in.

Really hope there's no nodes. Even one takes the chances down from excellent to pretty good. Odds can be beaten, of course, and I know plenty of people who've done it, but it's not guaranteed.

He also said there's a possibility it is medullary. It has the signs of white blood cell activity and hormone negative. Medullary is good news, you have better odds. He didn't feel any nodes, which is also good news. He is having their people recheck the other breast just to be sure.

Team approach better too. Got in to see a plastic surgeon on the spot instead of getting a vague referral and two weeks to make it happen herself. I didn't like the plastic surgeon, who treated any question from me as an unwelcome interruption, as much as the regular surgeon, but mom seems to like him okay and so long as he's good, which he certainly seems to be, I don't care if I never want to have dinner with him.

She wanted the "trans flap" reconstruction, or more accurately the "free flap", which is the most natural looking but a much longer, harder operation and not indicated for smokers. (Mom's been smoking a long time.) Plus you can only do it once, so if she needs a second masectomy later she couldn't do it again.

Upshot is, she quits smoking now. Has a masectomy in two weeks with the pre-implant stretcher thingie which is simpler, saves the skin, and is better than nothing. In six weeks she'll get her genetic test back and know if she's going to have a prophelatic masectomy on the other side. (It's worth it if you have the gene, not if you don't. Odds go from something like 7 percent in 10 years, to 70.)

Then she'll be having chemo. She's right on the edge: over 1 cm. tumor gets it, under doesn't. She's right at 1 according to mammogram but even if it comes out under in actual surgery she's gonna go for the chemo -- be on the safe side especially since it's not hormone receptive so she can't take the estrogen blockers instead.

When chemo's over, either 4 or 9 months later depending on nodal involvement, she'll have the second operation if needed, and then have the transflap for one or both at once. Unless she changes her mind and just goes for the implant. The implant scar will make the transflap a little harder, but the plastic surgeon is confident he can do it and since the risk is only to poorer cosmetic result, not health, if mom is okay with it I am too.

We've been looking into Sloane's new "dose dense" chemo which seems to have better results and fewer sideeffects. Also the user of herceptin as an adjuvant treatment. That's still in clinical trials. Mom would qualify if she has more than 4 nodes. Sort of hope she doesn't.

We go in Monday for pre-surgical teaching, consent, and testing. Earliest surgery would be April 29. I have my weight in brochures to read and take notes on, which is all that's keeping me from chewing my metaphorical nails.

I wept all over mom last night, which I felt bad about (she shouldn't have to comfort me) but she didn't mind. Keep wanting to hang on to her so she can't go anywhere. Unconscious mind not the brightest, evidently.

Snapped at my therapist, too. She didn't want me go too far into fear for stuff that hasn't happened and may never. I want there to be one place where I can be afraid and not have to be strong, and cheerful, and brave. I want to deal with the reality of the risk and not end up, if the worst does happen, at a sheer drop off beyond which I've never let myself imagine. The thing about cliffs is that I tend to go over them.

She apologized. Damn straight.

Mer

Comments

Sloan Kettering

[thatwordgrrl.livejournal.com]

Speaking from a professional level...

Your mom couldn't get much better care than at Sloan-Kettering.

She'll be in good hands.

Again, I wish for both of you what will do you the most good. :>

Re: Sloan Kettering

[boniblithe.livejournal.com]

Ditto that. My surgeon was wonderful, my stay there quite nice - best hospital food I ever had, which means a lot when you're sick and don't want to eat. Nurses at MSKCC and everyone on staff very in tune to the recovering cancer patient. You couldn't ask for a better place to be than where you are.

Parking's a bitch, though, LOL.

Re: Sloan Kettering

[stakebait.livejournal.com]

Thanks!

That's what we figured. It's a potentially life-threatening illness, go with the best. And luckily it's in her insurance network!

[camwyn]

Oi, what colour cotton would you rather I work on the hat in?

[stakebait.livejournal.com]

Pink, or a soft red, alone or with white would be lovely. Thank you so much.

[thebratqueen.livejournal.com]

[HUGSHUGSHUGSHUGSHUGS]

[stakebait.livejournal.com]

Thanks, sweetie.

[cadhla.livejournal.com]

Oh, darlin'.

Let me know if there's anything that I can do? Your involvement in this has been amazing; your mother is lucky that she has you. I know a lot of women whose daughters haven't been willing to be this involved (my own mother included).

Love you.

[stakebait.livejournal.com]

Thank you. My mom and I are very close -- we always were, but the mutual ditching of dad and discovery that the rest of the family, while fond and friendly, is not into the introspection really cemented it. Basically we're a tiny little nuclear family of two. And now I'm failing to remember which molecule it is which has only two parts.

Love you.

[chanaleh.livejournal.com]

(she shouldn't have to comfort me)

But to the extent that she can, it may well help comfort her.

*hugs*

[stakebait.livejournal.com]

Yeah, that's basically what she said. It makes sense, but it's going to take a little mental adjustment on my part.

The tiny baby in your icon is adorable!

Mer

[cicer.livejournal.com]

I'm very glad to hear that your mom is getting such good care and the news from the doctors seems mostly positive. I've been thinking about you and your mom and hoping that things are going well. Best of luck to you!

[stakebait.livejournal.com]

Thank you.

[monanotlisa.livejournal.com]

Definitely looks like you two are in good hands. Will keep wishing you all all the best...

[stakebait.livejournal.com]

Thank you!

[renenet.livejournal.com]

Best doctors possible? Check. Detailed plan of attack with follow-ups and what-ifs accounted for? Check. Fabulous, loving, caring daughter? Check. Your mom's in good hands. **HUG**

[auroramama]

Hear, hear. All true. Also: it's true that letting your Mom be the comforter at her own discretion will make her feel better. Your therapist, on the other hand, should do her job without having to be reminded by you!

[inyron.livejournal.com]

I just wanted to say I'm real sorry for everything that's happening, especially since your mom does have to go through chemo. *big, big hugs*

[stakebait.livejournal.com]

Thank you.

It's vaguely possible that she won't need chemo. Maybe the tumor will be so much smaller than it looked that the doctors will say pshaw, no need. But it's not the way to bet.

[trinker.livejournal.com]

Thank you for the update. It looks like there's more optimism now, and I'm somewhat relieved on your behalf, although still sending much wellwishing in your direction.

[stakebait.livejournal.com]

Thanks! I think the optimism is not so much that the facts have changed but that they've been explained to us better. It's still an aggressive, hormone negative cancer. But there are pluses too.

We'll see after the surgery. If there are no nodes and it's medullary, I will be *extremely* optimistic. If there's lots and it's in the chest wall, maybe not so much.

[dotsomething.livejournal.com]

You and your mom are going to need *each other* so it's okay if you cry sometimes. And it's probably true that it might steady her to comfort you. However, I understand your not wanting to do that to her often.

Totally makes sense that you need a place where you don't have to be brave and cheerful. Being brave and cheerful in situations like that can really exhaust your soul.

[stakebait.livejournal.com]

Thank you.

I don't imagine I will do it to her too often. But since she didn't mind, once was kinda nice. No secrets, you know?

[luvs-phoenix.livejournal.com]

Thinking of you luv.

((hugs))

[stakebait.livejournal.com]

Thank you.

[raincitygirl.livejournal.com]

Eeep. It sounds like you're holding up brilliantly on the outside and being really supportive and organized, even if you're freaking out inside. I hope all goes well.

[stakebait.livejournal.com]

Thanks. :)

[http://users.livejournal.com/lady_alatariel_/]

That is so good that you found a doctor you like ::hugs you::

Thats not fair of your therapist to say that! Things like this are major and scary and you have every right to worry about them! I would be worried if you did just shrug it off like no big deal.

::snuggles up to you and gives you some tissues::

And I'm sure your mom understands and it probably makes her feel better that she can still take care of you.

[stakebait.livejournal.com]

I think it did make her feel better. That hadn't occured to me, which is funny because I know it makes *me* feel better, but for some reason I didn't translate it.

It's not that my shrink didn't want me to worry. She just didn't want me to go past worry to feeling sadness, or something. Still annoying, though, but I don't think she'll do it again. In general I'm not a big fan of being told I should stop what I'm feeling and feel something else.

[boniblithe.livejournal.com]

Glad to hear that all went well. Keep us posted!

[stakebait.livejournal.com]

Thanks! And I will.

[anonymous_sibyl]

Keep wanting to hang on to her so she can't go anywhere.

I did that. I bought all the books and did all the research and found support groups for Mom. Then one day she showed me a chapter in some book about adult children acting like the parent when their mothers have breast cancer. Then we laughed and released a whole bunch of tension.

(I felt sort of uncomfortable tellng you this, because I don't want to make this about me when it's about you and your mom. I decided to tell you, though, because I wanted you to know you're not alone. It helped me to find that out when we were going through it, so I hope it helps you.)

[stakebait.livejournal.com]

Oh, I'm doing that too, but I meant the more literal hang onto her -- hand, shoulder, hugs. In some ways I'm acting like the parent and in some ways like a toddler with separation anxiety. But in some ways she needs a parent to take care of her now (no spouse, no sibs, I'm it for caretakers) and in some ways I think she finds it reassuring how much I still need her, so I don't think either is really a problem. Just odd for me to experience the intensity of it in both directions at once.

Mer

[tenebraeli.livejournal.com]

{{{hugs}}} and love always

[stakebait.livejournal.com]

Thank you.

[iswari.livejournal.com]

Well, I'm glad she apologized! In the context of the aforementioned health issues, I had a consult with a therapist who tried something like that -- and I never went back. ;-P

Don't feel bad about crying on your mom. Honestly, I think both you *and* your mom will be better off if you don't feel like you have to be strong *all* the time. It's good to show a little vulnerability sometimes in these situations. On the one hand, it may be hard for her. On the other hand, it'll probably help her to be more at ease with her own feelings, and with you. This is hard stuff. You're both human...and the facade of invincibility only goes so far. *hugs*

[stakebait.livejournal.com]

Heh. She's a good therapist in general -- the same one I've been going to since college. I'm not going to ditch out on her now. I think part of the problem is that I've missed the last two weeks with her (one for me, one for her) so she hasn't seen all the other stages and moods I've been in and therefore over-reacted to this one as the fundamental truth of how I'm feeling, instead of one of many aspects but they only one I hadn't really let out yet.

And I guess she has seen people do too much pre-grieving. But I would have thought she'd know me better by now. It's not easy for me to slip into my fears, it's hard for me to let myself get there. And when I do, the last thing I need is to be shut down.

Plus, frankly, a certain amount of pre-grieving is my style. I tend to mourn things (high school graduation, ending relationships) before they happen, so that by the time the end actually comes it's not unthinkable any more. I'm not happy, but I'm at least braced. Possibly that in itself is something to address in therapy, though I'm not convinced it's a problem, but either way, not right now.

And I think you're right. It's reminding me of Buffy -- as everything does. Did you watch that show? There's an episode after her mom dies when she's being all practical girl and it's not till she lets herself cry with her sister that the healing really starts. Not that my mom is dying, but you know what I mean.

[bcassie.livejournal.com]

*Hugs*

I wish you and your mum the very best.

[stakebait.livejournal.com]

Thank you.

[batyatoon]

I want there to be one place where I can be afraid and not have to be strong, and cheerful, and brave.

Yeah.

It's tough for some people to deal with other people's negative emotion without trying to Fix It or otherwise make it go away. A therapist, however, ought to know better than to go for the quick Fix It approach.

Good thing she apologized.

[stakebait.livejournal.com]

Thank you. It's really out of character for her to go for a quick fix -- we've been in therapy together 10 years, after all. I don't really know what she was going for, but I think it was probably more complicated than that. However I've decided I don't really want to know what she was going for, since it wasn't what I needed.

Unless, of course, she was going for giving me a legitimate target for my anger. She doesn't usually manipulate me that way, but under the circumstances she might have felt it warranted, and if that's the case I'm not sure she was wrong.

Mer

[kuzibah.livejournal.com]

It sounds like things are being handled very well. This is an awful lot to deal with, but you both seem to be coping fine, tears included. I'm praying for you both.

[stakebait.livejournal.com]

Thank you.

[tamnonlinear.livejournal.com]

It's still a tough landscape to cross, but you have a map now. It sucks a lot that all we can really do for our loved ones is yell from the boundries and hold up lamps and wait for them to cross it, and watch every step with worry.

*BIG BIG HUGS*

Courage to you both.

[stakebait.livejournal.com]

It really, really does suck, but at least we can hold the lamp high.

Thank you.

Slogans that are actually true

[akawil]

"Sloane Kettering -- the best cancer care anywhere." Your mom's in good hands.

Lots of good thoughts and wishes to you and your mom.

Re: Slogans that are actually true

[stakebait.livejournal.com]

Thanks!