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Re: My Gratitude Journal [Re: LadyGrey] #441437
03/11/19 07:10 PM
03/11/19 07:10 PM
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L
LadyGrey Offline OP
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I don't have the first idea what I want. What *I* want has never been high on the list of priorities. I lack the energy to try to figure it out.

Right now I want everyone to leave me the hell alone and let me be sad. I want to sit and listen to sad music and cry and not have a single person say, "you are so strong -- you will get through this."

That's for sure not happening.

Who gives a damn if I have a nipple when they shove me into the crematorium? Really is it MY job to drag everyone kicking and screaming out of the land of denial?

Got the biopsy report. Es no bueno.


Bidden or not bidden God is present.
Re: My Gratitude Journal [Re: LadyGrey] #441438
03/11/19 08:55 PM
03/11/19 08:55 PM
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SmilingWife Offline
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Originally Posted by LadyGrey
I don't have the first idea what I want. What *I* want has never been high on the list of priorities. I lack the energy to try to figure it out.

Right now I want everyone to leave me the hell alone and let me be sad. I want to sit and listen to sad music and cry and not have a single person say, "you are so strong -- you will get through this."

That's for sure not happening.

Who gives a damn if I have a nipple when they shove me into the crematorium? Really is it MY job to drag everyone kicking and screaming out of the land of denial?

Got the biopsy report. Es no bueno.


What did it say?

And see you just told us what you want. You don't care about a nipple. I wouldn't either!

Re: My Gratitude Journal [Re: LadyGrey] #441446
03/12/19 02:16 PM
03/12/19 02:16 PM
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star*fish Offline
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In real life, people can just sit and listen and let you be sad--or make you a cup of tea and quietly be there for support. And I'll bet most of the people on this thread would be willing to do that.

On the forum--if we just sat and listened--your thread would be an echo chamber. No one wants you to feel alone in your sadness and vulnerability, and the options in the forum-world to let you know we hear you, are the words we write. Sometimes those words might be clumsy, but if "what we feed--grows" --I guess people are trying to feed your strengths--because feeding your sadness is unthinkable.

Please take care of yourself and know that all of us care about you.


"Yes, I'll have the love combo, open faced with a side of respect and large a glass of forgiveness, easy on the ice please--my brother
Re: My Gratitude Journal [Re: LadyGrey] #441453
03/12/19 06:54 PM
03/12/19 06:54 PM
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Kayla Offline
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LG - your life matters. You matter. Your choices matter. You are loved, appreciated and admired. ((((LG))))


Consider that we don't have to live with the consequences of our advice in your life. Act according to what you can live with!
Re: My Gratitude Journal [Re: LadyGrey] #441472
03/15/19 01:37 AM
03/15/19 01:37 AM
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LadyGrey Offline OP
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All my boundary work is coming in very handy:

1. It is what it is and it was what it was before I ever knew there was an "it".

2. Much of what ails me has been there silently all along.

3. "That's not what happened" in the face of anything resembling second guessing.

4. I have "X" amount of energy to spend on this, this being "Y". X may be greater than or equal to Y but in no event will X be greater than Y. Y is a constant and X is the variable.

5. Boundaries, once established, do and should shift constantly, sometimes suddenly, sometimes incrementally. It's part of learning and growing.

6. "Never" is, once again, out of my vocabulary.

7. I skipped the five minutes between the time that my body was psychological enemy in telling me my body was there to look good, and my physical enemy in that (a) it's trying to kill me, and (b) putting fat where it has no business being. I need to learn to speak nicely to it. Treat is like a dear friend who needs my support.

Last edited by LadyGrey; 03/15/19 01:47 AM.

Bidden or not bidden God is present.
Re: My Gratitude Journal [Re: LadyGrey] #441571
03/20/19 12:52 AM
03/20/19 12:52 AM
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LadyGrey Offline OP
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Originally Posted by starfish
and honestly I would hate to see them in iit.


When I got so sick with the first chemo, my middle child was banging on the locked door yelling, "please mom -- let me help you."

I don't think so.

After that, I called my husband who was hunting. We have differing memories of what happened next, but I was on the freezing bathroom floor all night, and at some point I became so sick that that was it. It never crossed my mind to call anyone besides my husband for help.

My gravest fear about being ill or old is becoming dependent, but if that is to be the case, I will be dependent on people I am paying. I'm lucky that I can say that. Most families can't.

Am I really deserving of the effort my family will put in surrounding this latest? I'm not so sure. I think you could make a strong argument either way, and either way I don't want their effort. I just want to live my small life as a supportive wife and mother. I know they will all accomplish great things.

I sort of threw up in my mouth when I wrote that but I suppose somewhere along the way it became true. I always thought I would lead an interesting life and it turns out I did not. I led a privileged life in many ways, but really sort of dull and predictable, right down to the affair right after I had my eyes lifted. They need another pass by a good plastic surgeon, but at some point I think it starts to look weird and ridiculous and I want my grandkids so see kind wrinkled eyes.

Intergenerational angst caused me to do my eyes when I was 49. My husband took a selfie of us and I thought, "my eyes remind me of grandmama's eyes" and I was terrified of my grandmother. Just being different isn't enough. Looking different is now part of the calculus.

So I look grey and tired and have droopy everything (but will apparently have really perky boobs with new nipples!). I'm still showering and walking my big dog every day and the new puppy makes me laugh but someone has to house train her soon. My husband went back to Houston and I have an appointment with a reconstruction surgeon tomorrow and a breast surgeon on Thursday and it all feels so familiar and ordinary that I'm truly not upset.

I think a lot about death because who wouldn't. I don't think it is a bad thing for me to sit around thinking this is going to kill me unless I stop living in paralytic fear which I have sort of done because I refuse to think past the mastectomy, final diagnosis and oncology/radiation plan, if any.

Just between you and me, there is a hell of a lot of stuff I haven't ever done because I was going to do it "when...." I've had some "whens" in the last months and years and am flat out of "whens". I'm going to the Holy Land, a bucket list item of mine. I'm going to do a non-religious tour of the Greatest Hits.

After the mastectomy......(see how this works?)


Bidden or not bidden God is present.
Re: My Gratitude Journal [Re: LadyGrey] #441579
03/20/19 01:25 PM
03/20/19 01:25 PM
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SmilingWife Offline
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LG, my step sister told me once that ‘it is a privilege to care for those we love’. The context was her caring for her mother as she died of ovarian cancer. I have often recalled and repeated that phrase.

I can’t quite wrap my mind around you refusing to allow your family to help you when you were sick. I remember when I first married dh (10 weeks after I met him) I was violently ill with a stomach bug. Both ends, big mess in the bathroom. My dh was at the door asking to help me. I wouldn’t let him in. I cleaned everything up myself and got a shower. I told him I didn’t know him well enough to see all that. smile

But he would have busted the door down had I been there too long. I just know him. With a kid I know it is different...,even if they are young adult.....it is difficult to override what mom is doing or saying.

I think I have said this to you before, that you will deprive your kids of a privilege if you reject their care of you. I am happy you have money to pay for help.....but you can do both.....use paid help and also let your people care for you even in small ways.

Have you booked your trip yet?

Re: My Gratitude Journal [Re: LadyGrey] #441590
03/20/19 10:43 PM
03/20/19 10:43 PM
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holdingontoit Offline
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My parents paid for 24/7 help during my Dad's last illness. My sister flew down once. Her son flew down once. I flew down twice. We did it for them. But we also did it for ourselves. I would have been very insulted if my Mom had said "please don't come". Not sure what I would have done. Accepted her decision with regret? Foisted myself on them? I am glad she did not make me choose. I am very glad I got to say goodbye. I hope you find a way in your heart to let them be with you.


Solutions? There are none. There are decisions.
Re: My Gratitude Journal [Re: LadyGrey] #441878
04/02/19 03:45 PM
04/02/19 03:45 PM
Joined: Oct 2010
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LadyGrey Offline OP
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Had the mastectomy on Friday. It is now a day surgery which bothers me, like you shouldn't be sent home the same day they cut off a body part, but that's the way it goes now. Pretty soon we will have drive by surgeries where you just tilt your bucket seat back and they come in through the window.

Pain was minimal and easily managed by codeine which puts me to sleep. Today is my first day off the pain meds and its fine. I don't feel like doing much of anything but at least I'm awake. I don't understand how people get addicted to opiods -- I couldn't stay awake long enough.

The breast itself looks a great deal like someone went after it with a ball peen hammer. I have no idea why this one is so much uglier than the other but it is quite the site. The plastic surgeon also didn't put anything in the tissue expander so it is flat and purple. The insurance company requires that 90 days pass between the initial placement of the tissue expander and filling it. I'd love to understand who came up with that arbitrary number and why but it was for sure not someone wandering around with a flat purple boob.

The drain is by far the worst part. It's this 4 inch by 3 inch bulb that hangs out of my chest, presumably stitched in somewhere under the itchy 17th century corset I'm not allowed to take off. The drain has to be emptied of "fluid", as in gross stuff, at least four times a day. It never fails to make me gag. Every so often the drain catches on something and that's one weird feeling.

My clothing options do not lend themselves to a drain. I must dress properly and put on make up everyday as part of my self care regime even if I sit on the couch all day. Mostly I look like I have a grapefruit size tumor on my side. Unfortunately, the drain will stick around for a couple of weeks.

Yesterday I got 10K steps, today the goal is 12K. Everyone argues with me but I just know exercise is the quickest route out of this nightmare.

Which leaves us with the final pathology report. That should come in in the next couple of days. The only thing I can compare it to is waiting for the jury to come back. I had clear margins and clean lymph nodes so there's reason to believe the mastectomy could be the end of it but that's what they told me last time so you will have to excuse my skepticism. I'll do radiation if needed but if they suggest chemo, I'm not at all sure I can go through that again. Maybe, but probably not. I can't tell you how much energy it takes to get through chemo. It's not just the debilitating effect of the drugs. It's having to be upbeat and cheerful through the whole goddamn thing. And I have to be upbeat and cheerful or my kids get all bummed and worried and I can't stand that.

Plus -- and this is important-- there are no bald women in Denver. You can't throw a brick without hitting a balk woman in Dallas, but I've been on the lookout and there are none. I despise being the center of attention. Scarves fool no one and wigs itch. Plus the whole idea of putting my bald head on a pillow gives me the heebie jeebies.

i keep having this weird urge to call my mother and tell her I have cancer again. It's not that I think she would give me love and comfort and support. It's more of a "see, you aren't the only one bad things happen to and watch how I handle this!" I wonder how she would react. I wonder if she would care. I wonder if she would bother to call or send me flowers. I think I know the answer to all those questions.


Bidden or not bidden God is present.
Re: My Gratitude Journal [Re: LadyGrey] #441879
04/02/19 05:07 PM
04/02/19 05:07 PM
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SmilingWife Offline
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LG you are amazing. Funny even in adversity.
I have never reached 12k steps. 10k maybe 6 times. So that is amazing.
I think about you often.
I hope you feel better each day.

Re: My Gratitude Journal [Re: LadyGrey] #441881
04/02/19 07:29 PM
04/02/19 07:29 PM
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Orchid2 Offline
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Good morning LG,

Thanks for the update and sharing your experience. It is important to get the patient's POV of procedures. wink

10K steps a day? Ok, you've got me thinking, I'm ashamed to think how long it would take me to reach that # of steps.

Sounds like that drain doing it's job even if it isn't stylish. wink

So are you letting your family help out? Are you on food restrictions for a while?

Take care,
Orchid


Orchid
Re: My Gratitude Journal [Re: LadyGrey] #441882
04/02/19 08:24 PM
04/02/19 08:24 PM
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holdingontoit Offline
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LG: do you have to measure how much fluid comes out of the drain when you empty it? We had to do that for my wife, as you say. 4 times a day. And write down the amount and report the amount to the nurse at the surgeon's office. In the end I am not sure it made any medical difference. I think the doctor told us to do that so we would have something to focus on besides how gross it is to empty the drain bulb of fluid!


Solutions? There are none. There are decisions.
Re: My Gratitude Journal [Re: holdingontoit] #441883
04/02/19 09:18 PM
04/02/19 09:18 PM
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TC_Manhattan Offline
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Originally Posted by holdingontoit
LG: do you have to measure how much fluid comes out of the drain when you empty it? We had to do that for my wife, as you say. 4 times a day. And write down the amount and report the amount to the nurse at the surgeon's office. In the end I am not sure it made any medical difference. I think the doctor told us to do that so we would have something to focus on besides how gross it is to empty the drain bulb of fluid!

Originally Posted by holdingontoit
LG: do you have to measure how much fluid comes out of the drain when you empty it? We had to do that for my wife, as you say. 4 times a day. And write down the amount and report the amount to the nurse at the surgeon's office. In the end I am not sure it made any medical difference. I think the doctor told us to do that so we would have something to focus on besides how gross it is to empty the drain bulb of fluid!


"When you have a mastectomy, your surgeon may place drains in order to prevent the buildup of fluid and help speed up your healing.

Prevention of a Seroma

This is because without drains, fluid may collect in the space where your breast or lymph nodes had been, and this can cause symptoms like pressure and pain. More seriously, when fluid collects without being drained, it may cause a seroma to develop. A seroma is a collection of clear fluid (called serous fluid) within the wound. Seromas can delay wound healing and result in infection and a poor cosmetic outcome."

copied from this article: Purpose of Surgical Drain During a Mastectomy

Usually they have you wait until the fluid amount measures consistently below 30 ml. over a 24 hour period before they pull them out. Measuring every six hours (give or take) prevents the bulb from possibly leaking and gives you a better feel for how the amount gradually decreases. Plus emptying only once a day allows for bacteria to theoretically grow in there, since the serum is nutrient-rich and the bulb is usually close to the body, which keeps it nice and warm. If you ever see the serum get suddenly cloudy and discolored, let your MD know ASAP, to prevent infection from traveling to the surgical site.

Hope this helps..

Re: My Gratitude Journal [Re: TC_Manhattan] #441884
04/02/19 09:31 PM
04/02/19 09:31 PM
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Orchid2 Offline
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Very informative TCM. smile

Thanks.


Orchid
Re: My Gratitude Journal [Re: LadyGrey] #441885
04/02/19 10:37 PM
04/02/19 10:37 PM
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LadyGrey Offline OP
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I am so far away from 30 mm as to be but a dream.

They had me measure the first mastectomy but didn't say anything this time, or if they did I totally missed it which is entirely possible.

Have a follow up with the plastic surgeon on Friday so I suppose I'll find out more then. I'm sort of resigned to two weeks which is find because I got this news today:

The pathology report is clear! No lymph node involvement, no nipple involvement, no invasive cancer -- just 17 cm of very angry DCIS! No more treatment of any kind!

I can't believe it -- like an entire firing squad was aiming at me in my blindfold and they all missed. I feel like I got away with something really sneaky and clever like embezzlement.

And since I am fresh out of bosoms, I don't ever have to go through this again. Not even a mammogram which everyone acts like is no big deal but I found it weird and dehumanizing to have some woman I didn't know paw at my tits. Of course, many moons ago I let a man I didn't really know do the same so I guess I can't get up on too high a horse.


Bidden or not bidden God is present.
Re: My Gratitude Journal [Re: LadyGrey] #441886
04/02/19 10:50 PM
04/02/19 10:50 PM
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SmilingWife Offline
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Wow, that is awesome news!!! So, so happy.

Re: My Gratitude Journal [Re: LadyGrey] #441887
04/02/19 11:27 PM
04/02/19 11:27 PM
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Orchid2 Offline
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HI
LG,

This is good news. smile

Hugz,
Orchid


Orchid
Re: My Gratitude Journal [Re: LadyGrey] #441888
04/02/19 11:42 PM
04/02/19 11:42 PM
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Blair Offline
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Really grand news, LG. Take care of yourself and pamper yourself so you can heal quickly.

Re: My Gratitude Journal [Re: LadyGrey] #441889
04/03/19 12:36 AM
04/03/19 12:36 AM
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holdingontoit Offline
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Great news. Glad you got it. Thanks for sharing.

And wow, you got to keep your nipples?!?! Wonderful. My wife lost both of hers. On the other hand, now she has the advantage that she can easily go bra-less in any weather because there are no headlights to turn on!


Solutions? There are none. There are decisions.
Re: My Gratitude Journal [Re: LadyGrey] #441890
04/03/19 03:15 AM
04/03/19 03:15 AM
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Miranda Online
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Well that’s fantastic news LG. You get to get off the crazy train sooner rather than later at least. I wouldn’t wish chemo on my most bitter enemy at this point. The whole thing just sucks goat @&$).

Thanks for updating us. I’ve been thinking about you quite a bit.


When we open to this moment and don't judge it or try to change it, even when we're suffering and wish it were otherwise, we tap into the spaciousness of mind that allows us to move forward skillfully, with discernment and joy. -- Sharon Salzberg
Re: My Gratitude Journal [Re: LadyGrey] #441893
04/03/19 06:37 AM
04/03/19 06:37 AM
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What wonderful news

Hopefully now you ca focus on resting both you body and your mind while you recover

Le Grá


You have brains in your head
You have feet in your shoes
You can steer yourself any direction you choose.
You're on your own and you know what you know
And YOU are the one who'll decide where you go
Dr Seuss
Re: My Gratitude Journal [Re: LadyGrey] #441894
04/03/19 12:50 PM
04/03/19 12:50 PM
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catperson Offline
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Wonderful.

Re: My Gratitude Journal [Re: LadyGrey] #441895
04/03/19 02:13 PM
04/03/19 02:13 PM
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I'm so happy for your good news. Drains are lousy but limited in time. No further treatment needed is the best news ever.


Chrysalis
Re: My Gratitude Journal [Re: LadyGrey] #441950
04/06/19 02:11 AM
04/06/19 02:11 AM
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second try, if the youtube link doesn't post, here's the link: https://www.youtube.com/watch?v=3GwjfUFyY6M

love you!! omm

Last edited by ohmy_marie; 04/06/19 02:14 AM.

may came home with a smooth round stone
as small as a world and as large as alone. -- e. e. cummings
Re: My Gratitude Journal [Re: LadyGrey] #441961
04/06/19 08:41 PM
04/06/19 08:41 PM
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LG:

Glad to hear of your pathology report. Keep fighting!

SFB


Finding an ethical way to deal with pain, fear, disappointment etc..is part of the experience of becoming a stronger person...one who is driven by compassion instead of compulsion...ie I have a legitimate reason to be stressed out right now...however, my response to it will determine how others percieve me, and myself. (quoting Star*Fish)
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