Great weekend-new uphill battle

Last weekend was "Goldie's weekend." It was a smashing success, save for the fact a few of my angels weren't able to come. On the upside, with only 7 girls sleeping over (Toots and Audra went home to their own beds) everyone had a comfy place to sleep! (At least I hope so. Three were on air mattresses. :-))

We talked and talked, laughed, watched funny music videos (have you seen the one with Justin Timberlake doing the Beyonce video? haha!), and made funny pictures (some of which are now on facebook thanks to naughty Merrilee!) We listened to music, broke bread, and stayed up waaay too late, because no one wanted the night to end. The exodus occurred mostly on Sunday, giving me instant withdrawal :-( But luckily Merrilee stayed with me Sunday night and I didn't have to say goodbye to her till Monday afternoon. Richie softened the blow by coming home from his ski trip. It's funny. Even though I was surrounded by my long lost friends from around the globe, I missed my honey so much. Over the weekend I kept chuckling to myself, picturing dressing him up as one of the angels so he could've stayed! heeheehee.

On Monday I had my 3rd to last chemo! Yay! On Tuesday I met with my surgeon, one of my team of Doctors from MD Anderson. Let me mention here, MD Anderson rocks. The people there are so accommodating and kind. And the promise they make to have a team of doctors who discuss your case weekly sure sounds good. But...in practice, not so much.

The issue on the table is reconstruction. For those of you who don't know, following a clean PET scan showing no cancer has spread in my body, I am going to have a bi-lateral mastectomy. As I understood it, at the time of surgery, the plastic surgeon will be there to close me up, placing two expanders in my chest. You see, the skin has to be stretched to accommodate the implants that will eventually replace the expanders, since so much skin will be taken during the surgery--especially in cases of Inflammatory breast cancer (IBC) where the cancer has invaded the breast skin. The expanders are slowly inflated. It has to be like this. if the skin is stretched too quickly, it dies and never comes back. (Picture Michael Jackson's nose--or the hole where his nose used to be)

OK, so surgery, expanders, then radiation then reconstruction.

Radiation lasts 6 and a half weeks. It damages the skin, delaying the final reconstruction by 6 to 9 months , and in some cases, all the way up to a year, as time is given for the skin to heal.

The way I understood it, this was protocol. Only last week, my radiologist said something about "bad outcome" of reconstruction with implants. He said tissue replacement works better in cases with IBC. Huh? First I heard about this. I kind of dismissed it, too, because, although I wouldn't mind my belly fat being moved--hell, throw it away!--I don't want muscles cut from my stomach and back to create a new pocket. Great, so now I have breasts, but no abs, and meanwhile I'm going to be dealing with rehabbing my arm where they'll take out lymph nodes--at least 12 as I understand it. Will I ever be a functional human being again?

Ok, so then I talked to my head oncologist. For the first time, she tells me her opinion. No stretchers at all till a year has gone by following radiation. Say what? Yes, she says, she doesn't want anything in me that will inhibit her ability to spot any recurrent cancer growth along my chest wall.

Yesterday, I spoke to my oncological surgeon. She rather poo-pooed the idea I should wait to have the stretchers put in. She says the expanders may actually make it easier to spot recurrent cancer.

I scratch my fuzzy head. Doc 1 says no stretchers for a year. Doc 2 says tissue replacement instead of implants. Doc 3 says implants and go ahead with the expanders at the time of mastectomy.

My thoughts? I really don't want three surgeries instead of two. If they put the stretchers in during the mastectomy, that's one less time they have to cut me open, because those expanders have to go in and do their work prior to inserting actual implants. I also don't want to wait a whole year to start looking normal to myself and to move away from this freakin business of being sick.

Still, if I have to I will. But how do I know what is best if my "team"--every one of them!--is giving me conflicting advice? I'm really upset. This is a big decision and I want to have an opinion, not just a preference.

I have made an appointment to speak to my oncologist to address this issue of the team not being in agreement on the subject of reconstruction.

I'm sorry to be so graphic. I don't really relish discussing my new and improved breasts on the web, I assure you! But I felt I should so that I could pass on what I learn. It is my hope that someone in the future who has to deal with IBC will be able to use my experience as a reference, because I couldn't find any answers on the web and I looked.

One good thing came from looking. I found a website called eraseibc.com. The site has made several videos detailing the nuances of IBC. The latest video is really good, interesting and informative. I'm posting the link below. Richard and I highly recommend viewing it for your own edification, as it may save the life of someone you know. Please pass the video on. The key to surviving this highly aggressive cancer is early detection. (By the way--I am among those who detected early)

http://vimeo.com/15550223

I'll post again after my meeting tomorrow.