Friday, June 5, 2009

I've finally made my decision

After ridiculously thorough research bordering on obsessive, I've reached the most sound medical decision I think is possible. In total I have seen 5 breast surgeons, 4 plastic surgeons, 2 medical oncologists and today met with 2 doctors of radiology. I had an ultrasound to look at the suspicious lesions revealed by the MRI. There are a number of them and biopsying them all would turn me into a human pincushion. The point is that my right breast has multifocal carcinomas. Removing the amount of tissue necessary to ensure getting all of it barely qualifies as "breast conservation" -- at best you could call it a partial mastectomy. And even then, relying on radiation to zap whatever microscopic stuff could be missed isn't the safest bet in terms of recurrence, not to mention the cosmetic results could be very poor.

Bottom line: I'm having a mastectomy.

It will be a skin sparing one with immediate reconstruction (tho the creation of a nipple/areola is done months later, to let things "settle"). On the bright side I will also be getting a tummy-tuck, that's what they use to fill in the emptied "breast envelope". However there are some dangers & complications regarding that due to my thrombophillia, but I'll write more about that another time. Fortunately there will be practically no scarring on the breast itself, it's not like the brutal versions done in the old days. I may have a small bit of incision emanating out from the newly built nipple/areola, but other than that the rest of my skin stays totally intact.

In retrospect, just on the cosmetic/emotional front this has really been more like a choice between losing or saving my nipple in my mind. In a way I feel like I'm going to end up with a "nipplectomy" because the rest of the breast will look pretty normal even after surgery. If I had chosen to try and keep my nipple,tho, I've been counseled there's a better than good chance it would have no sensation anyway as the one tumor practically touches the areola and no doubt getting it out would involve the decimation of nerve endings. In addition I would have to have 7 weeks of radiation, which now with the mastectomy is not necessary. Radiation has it's own set of health risks, but it also can wreak havoc on the cosmetic results in a case like mine.

I have been most helpfully guided in the end by very caring women medical professionals, which I will write about another time. There's something comforting and reassuring about that. I've also met the best and the worst of the profession over all and am especially motivated to try and somehow work to change the system after this is all over, because finding out information and getting good care shouldn't be the province of just the educated or middle class woman. But I digress :)

I am as at peace with my decision as one could be under the circumstances. My family, both Michael and Megan (Danny's too little) have also come to the same conclusions and are completely supportive of my choice. My Meggie is a wise little soul and really seems to get this -- I'm so proud of her. The way she helps take care of her brother is particularly touching and gives me a sense of both pride and relief. They have eachother.

As to my husband, the rock and saint, he has been with me every step of the way. I am hugely lucky. With the exception of two times when we didn't have anyone else to watch the children, he has come with me to every appointment, met with every doctor, held my hand through every test. Even on those two occasions we dragged the kids with us and he stayed in the waiting room for a couple hours, trying to keep a toddler entertained (no small feat) just so I could have a chauffeur and shoulder to lean on when I got done. I have written little about him only because he's a quiet and unassuming kinda guy...but he is truly a hero to me, and Honey when you read this know that I could never have survived this process without you. I can only entertain surviving what comes next because you are with me. I love you and I know you love me -- that's a gift beyond precious.

Okay, before I get any more soppy, I wanted to add that I don't have a date yet, and while I'm leaning towards one particular hospital and team of docs there's just a few loose ends to tie up before I commit. I'll post when I know for sure.

Now, back to the gratitude front....

Thank you a thousand times over to every single person who has read even a paragraph of this blog, let alone taken the time to leave me the most wonderful and supportive comments or send me lovely emails. You all have been such a huge part of what keeps me going, I cannot fully describe the strength I have received from knowing you are out there. You are in my heart as I move forward.

Blessings to all and I'll post again soon.

9 comments:

Karen said...

Oh I am so happy you have made a decision. Doesn't that feel good?
You know, there is an amazing permanent makeup artist I know who helps women regain their "nipples" after surgery. She is a well-respected specialist. She's done my lips, and I know those aren't nipples, but it's a really easy deal. She is truly an artist and has restored self esteem to many breast cancer patients. You could check into this where you are. I bet there is someone that specializes in this in NYC. I have seen photos and its really wonderful what they can do!

Have a good weekend resting in the fact that you are making great decisions for yourself and your family. XO

Chuck Dilmore said...

Kayleigh,
now you can rest.
you have released your decision to the universe.
now you can focus on healing.

and you will.

you have a little, loving crowd behind you - not unlike the Verizon Network! we're connected, and honored for the chance!

we're with you, Kayleigh!
peace and love~
Chuck

Jane said...

Kayleigh - I am relieved for you. All the energy you have needed to pore through the research can now be focused on getting well.
Take care my love.

notSupermum said...

Kayleigh, I'm pleased that you have come to a decision. And it must be comforting to know that you did enough research to make an educated decision.

Thinking of you, sending you positive thoughts. x

Mervat said...

There are so many hurdles and this is one of them. One hurdle at a time, one release after another. I feel that you are at peace with this decision. I am glad that you have your loving family guiding you, and there for you.

Thinking of you always,
All my love,
Mervat

Brenda said...

Glad you were able to reach a decision, its tough, but once you do you know you are on the way to getting better.

Keep us posted on your progress.

Alison said...

I'm so glad you made your decision. Like others have said, now is the time to focus on healing. Take care sweetie and many healing thoughts to you.

evanadine said...

there is a peace that comes with making a decision as large as the one you have just made. i commend you on taking the time + effort to go see all of those doctors and get all of the information and make the decision you needed to make -- YOUR choice, the one that's right for YOU. your strength throughout all of this has been amazing.

La Belette Rouge said...

I just lost my comment that took me so long to write. I hate when that happens. I said a lot of things but the main point was that I am so damn sorry. I am so very sorry. I hate that you have to make this decision and yet I am relieved that there is a decision that will bring you peace. I so want peace for you.

Know that I am thinking of you and wishing I could do something real and tangible to be of some help. So often blogging makes far away friends seem so close. With what you are going through I feel do keenly the distance. I know I have said it before but I wish I could bring you food or flowers or something.