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Total fucking breakdown - and YOUR MISSION

I used to look back at my pregnancy and joke that I was going to VEGAS, because if there was a chance of something happening, it happened. Only a 10-15% chance of getting multiples from Clomid. Only a 10-15% chance of getting gestational diabetes, and if you do, it is only a 3-5% chance you would have to rely on insulin injections. I could go on, but I won't.

The odds were coming through, and although they were a challenge, they played out well.

God, I HOPE there is a silver lining in here somewhere. SOMETHING. Years back, I know I will look back at this and know I made a wise choice, and probably find humor here.

Not. right. now.
I'm not looking for your 'there, there, it'll be better' comments. I'm crying, I'm mad, I'm sad, and I'm venting. That simple.

I went in for surgery this morning to remove the tissue that died. Remember the 3-5% that you will experience a blood clot in a DIEP reconstruction, and if you do, then 50% chance it won't regain blood supply? Yeah. That one. They were then going to put in an expander and gradually blow it up so that in 4-6 months I could go back and get a different kind of reconstruction for the right breast. Either way, I would go home with somewhat similar sized breasts, and we would clean up to rest later.

Not so! When I work up a couple of hours ago, they tell me that the doctor felt there was too big of a chance for infection (I guess the dead tissue was pretty bad off), so he didn't put the expander in. We'll have to do that a few months later, after everything has healed up, then in 4-6 months from there, we'll be able to do a reconstruction.

For most of the next year, I'm going to have one breast. The other is flat as a pancake. Actually, it's more like a fallen souffle because at one point it is actually concave.

By the time I got back to my room, I was crying for the first time during this hospital stay. I couldn't stop. I finally got settled down and then later started again when I went to the bathroom and saw my chest.

PLEASE let me go home by Saturday and for everything else to run smoothly! I do not want to be 'special'. I don't want to be 'strong'. I just want to be normal.


Here is your mission, should you choose to accept it!

I don't know the first thing about having only one breast. I didn't research that part because I was having full reconstruction at the time of the mastectomy. I don't know what to do here! There are several things I want or need to know. Maybe you can help:

- Post-mastectomy camisole (XL) These are supposedly soft little camis that have gentle cups, some you can even stuff to even things out, and they removables pockets where you can put your surgery drains instead of just pinning them inside your shirt.

- How do you get a bra that works for this? There are so many things out there, and I don't know what works and what doesn't. How do you get fitted? How quickly can you get/wear one?

- What other things am I going to need to know?

Damn glad I don't base my feeling like a woman on physical appearances. Otherwise, this would probably have devastated me.

It is just made hard with these complications, because I know that when it comes down to it - I CHOSE THIS. Take away the doctors recommending it, the family history, the genetic mutation, the insurance paying for it, not having to worry about breast or ovarian cancer for the rest of my life, etc. This is NOT something I had to do. I also feel like I can't say that to several people, Scott included. Scott wants to fix things. He wants things to be better for me. He has been really supportive during this whole thing. I just keep in the back of my mind that when he first heard it as an option, he dismissed it by saying it was too drastic, and a 'higher risk' for breast cancer didn't mean you WOULD get it and even then you would be watchful and probaby catch it earlier. He supported me, even though this wouldn't have been his choice. Yet I don't want to vent in front of him about this, because I'm so afraid he'll feel no sympathy because it was something I brought on myself. See, if I had listened to HIM.... He would probably NEVER do or say any of things, even if he did actually think them. I just have the fear that it would be there.

So, that is my state of mind now. Then you add in the fact that I am ABSOLUTELY FUCKING ALONE UP HERE, and you'll probably be hearing a lot from me today. Scott's going to be up here 'sometime this afternoon'. We called him at home after the surgery to say how things went, I called him when I got back to my room. He said he was going to feed the kids and make his way up here later. Jacquie is sick, so she won't come out. I think Angela and Colleen might come out tonight for a while. I have beautiful flowers up drying from GS, so I can always think of them. A couple of people from AMAMOM came by to visit earlier in the week because Amy and I were both here. I didn't really know them, they just stopped in to say hi and see how I was doing. Pretty much, other than my husband dropping in an being bored for 30-45 minutes at a time every couple of days, I have had no visitors. I really haven't gotten many calls either. I keep hearing rationalization - I wanted to give you a few days to recover from surgery first, I wanted to try to come down later in the week when there is less traffic, I don't feel well. Guess what? If you are going to come visit, that's GREAT! If you don't know or aren't, don't say you are and then make excuses. It doesn't make things better. Don't wait until I feel better, or wait until I get home to contact me. Yes, I need you then, but I need you now, too. Don't make empty offers. Don't say 'Let me know if there is anything I can do to help with the kids!'. Instead, if you are really wanting to do something, PLAN something then ask if it is ok. I would like to take the kids to the park for a couple of hours on Thursday or Friday, would that work for you guys? I was at the grocery store, so I thought I would pick up some soft drinks or snacks or whatever for you. Things like that.

YAY! Angela just called and said she's coming by in an hour or so. My first visit from a friend! And it's only day 8.

My 5-7 day hospital stay has turned into a really freaking long one. I've been here 8 days already. Might get to go home in 2. I just need OUT of this place, and I need a plan. I'm not handling this very well.


( 11 thoughts — Whatcha' think? )
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Dec. 21st, 2006 09:43 pm (UTC)
Yes!!!! We thankfully did get the leaky lined fixed this morning. There is that bit.

Also, the nurse brought me Xanex, and I TOLD my friend Ang she needed to come down now. *laugh* So she came out here with our friend Colleen and their collective four children (2 7 year olds, a 5 year old and a 4 year old). It made it much brighter in here for a little while.

Thanks for the info on the Nearly Me site. I'll check it out today, and I'm going to see about trying different things when they release me for that to see what works well for me.
Dec. 21st, 2006 07:30 pm (UTC)
Hey, I know I'm pretty silent as far as comments go, but I do read and I have been keeping up with everything going on. Glad to hear you're alright, even if things haven't gone exactly as planned. I've never had any one in my life expeirence anything along these lines, so I don't have any words of widsom to share, sorry.

I know it's rough and lonely now, but things will start looking better soon - keep your chin up.

Dec. 21st, 2006 09:44 pm (UTC)
Thanks! It's nice to just hear the words and have the thoughts out there.

You and Jen take care.
Dec. 21st, 2006 08:34 pm (UTC)
You might want to talk to dwa20, I think she can give advice based on experience.

Dec. 21st, 2006 09:15 pm (UTC)
I'm not going to tell you it's okay, cuz it aien't. No matter how you look at the situation, it's fucked up. You chose the least fucked up of the choices available, but it's still the lesser of the available evils. Life isn't fair and this isn't fair. That said, you'll live to bitch about it. I'm grateful you chose this path.

When I read the words "I chose this" I felt a knife go through my soul and just twist and twist. It resonated so much that I had to go throw up. (Remember, I was 22 when I had the hysterectomy and had to beg them for it. By the time I was "no longer a woman" my uterus had been cut in half by the uterine nerve which had been contracting nonstop for 4 years.) I punished myself for years for making that choice, even though it saved my life. Apparently, I am not quite through with the punishment. From that perspective, I'm begging you to talk to someone. Vent. Scream. Yell. Do NOT be strong. Get it all out now and in the coming months. You made the right choice, you have to believe me. But that doesn't make it the easy choice. The hospital HAS to have someone you can talk to about this. Someone who knows what you're going through and won't pat you on the shoulder with the stupid "there, there" attitude.

You're stuck in a particularly bad spot. In times like these, you have to draw back and focus on the here and now. You have to think about today in order to make it to tomorrow. Only that's shit. You have to think about next year in order to make it to tomorrow. Not an easy dichotomy to balance. I'll be saying mucho prayers, dearheart, that you find the strength to get through this with the least amount of crap. White light, energy and strength.

Dec. 21st, 2006 09:47 pm (UTC)
Hands down, one of the best responses I've ever gotten on anything. *hug*

Dec. 22nd, 2006 12:02 am (UTC)
Silver linings sometimes take a long-ass time to find. I *really* recommend asking for some kind of mental wellness support, whether it's one-on-one counseling, a support group, whatever. Getting a head start on grieving this major change in your life will help you in the long run.

Re the bras, call Ernie's Appearance Center at Baylor. They specialize in products and services that minimize the cosmetic side effects of cancer therapy. They're open weekdays 9AM-5PM and you can make an appointment ahead of time at 214-820-8282.

Traveling usually requires some planning for me due to my current car situation and now Laurel's out of school on winter break, but I'd be happy to call you anytime that works for you.
Dec. 22nd, 2006 03:20 am (UTC)
Thanks for the info! I'll give them a call next week and see if I can set something up. Maybe Scott can drive me out there to talk to them.

Calling anytime is fine. I usually try to fit my sleep (off and on) in between 10 pm and 9 am. Any other time I always have my cell phone around. If I'm with a nurse or asleep or anything else, I'll always just call right back when I see I missed a call.
Dec. 22nd, 2006 12:08 am (UTC)
Also, do you like sweet potatoes?

I'm trying a new recipe for sweet potatoes tonight -- large diced sweet potatoes, diced apples, fresh ginger, spices and maple syrup diluted in water, cooked in the crock-pot. My test batch is just about ready and smells wonderful.
Dec. 22nd, 2006 03:21 am (UTC)
That sounds absolutely YUMMY!!!!! I love sweet potatoes usually. Scott is getting our Christmas dinner from Dickie's BBQ, but I told him it was mandatory that he go out to Bostom Market or the grocery store to get green bean casserole and sweet potatoes casserole.
Dec. 22nd, 2006 12:50 am (UTC)
oh yuck, im sorry you havent had a good day.

maybe this will make you smile...i turned your son into a dancing elf!
( 11 thoughts — Whatcha' think? )