May love and laughter light your days, and warm your heart and home.
May good and faithful friends be yours, wherever you may roam.
May peace and plenty bless your world with joy that long endures.
May all life's passing seasons bring the best to you and yours!
~ Robert Frost

Welcome!

Welcome to my blog. This is my story of how I faced my risk of breast cancer, the decisions I made, the support I received and my week by week recovery from surgery. I chose to have a prophylactic bilateral mastectomy with immediate DIEP reconstruction at Beth Israel Deaconess Medical Center in Boston (March 2010). For more information on my 'Medical Team' please see tab above. I also have a wonderful circle of friends who have supported me throughout. They have provided us with lots of delicious meals and desserts. Many of those recipes are included above under "Feed the Flap" recipes. "Feed the Flap" is a term I coined when trying to increase my abdominal (fat) flap to ensure that I was a good candidate for the DIEP procedure. This was not something recommended by any medical professional, it was just something that made sense to me. I think it worked!! Feel free to join me on this journey and feel free to post comments.

Select the tabs on the left side marked Week 1, Week 2, Week 3..... to go immediately to the surgical/recovery part of this blog.


Thursday, February 25, 2010

Cold Feet?

I am not sure where this feeling came from, but yesterday I got really cold feet about my upcoming surgery. I still want the surgery, but am thinking that it might be better for me if I wait until the fall. I hadn't realized that I wouldn't be back to normal in six weeks. With summer coming I have so many things I need to be able to do, like living at my camp with my two daughters, while DH is two hours away. I don't have any help up there, so maybe the timing just isn't right.

Oh, to have a crystal ball. Wouldn't it be so much easier to make these decisions if we could only foresee the future? Putting my surgery off by 6 months wouldn't change the risk. With LCIS my risk increases 1% each year. The risk is that if I put it off I may never get back to rescheduling it.

I do find it interesting that I am questioning my decision to move forward. When I make big decisions I typically do this type of waffling. I like to know that there is an 'out'. BUT with a decision this big, I was surprised that I am rethinking my decision all over again.

One thing I did do was contact my PS's nurse who is going to connect me with a past patient who had all the same things going on that I do: LCIS, PBM, LCIS and lives a distance for the medical center. I am looking forward to speaking with her. This may be the piece of information I need to feel confident in my decision.

People with LCIS are in a unique situation. We don't have invasive cancer. What we have is a marker for increased risk of breast cancer in either breast with that risk increasing by 1% each year. 20% of in situ cancers are LCIS, so we are not in the majority. I know of lots of people with LCIS (from breastcancer.org), but I don't know anyone else in real life. So a big missing piece for me is talking to a real live person who has had the very same diagnosis as me.

At this point the best matches for me are my BRCA+ friends. They have been so supportive of me and my upcoming surgery. It doesn't matter to them that I am not BRCA+. They know what it is like to be told that you have a 50-85% chance of getting breast cancer by age 80. These women have been inspirational, brave, educational, supportive......the list goes on. They have helped me more than they will ever know.

My online LCIS friends have also been supportive, but still there aren't many of us who have gone down the same road as me.....living hours from the hospital, LCIS, PBM and DIEP. With LCIS, we fall in the middle, we have non-invasive breast cancer which may never spread. We are given our options: 1. vigilant follow-up, 2. vigilant follow-up and tamoxifen and 3. PBM. We are left to choose on our own. There are no advocates for us. We do our research, connect as much as we can and hope for the best.

So, in hoping for the best, I am trying to wiggle away. I want stop thinking about this and get on with my life. I want to focus on my kids, my DH, my business, my life. I have no idea if this is normal, but this is where I am at today. I call it cold feet.

5 comments:

rissawrites said...

Of course you have cold feet. It's a scary thing you are facing. it's normal to have doubts and worries.

And while you may not be back to normal in six weeks- you will be doing much, much better by then. Plus you can be braless without feeling strange because it is summer time so you can wear tank tops and bathsuits. PLus your kids will be out of school and can help you with things.

If you do put this off, in 6 months you will be saying, oh wait, the holidays are coming up. How can I be in recovery and do Thanksgiving and Christmas?

You have to do what you think is best for you. I think contacting a local support group is a great idea even if you do the surgery now.

Whatever you decide, know that you have the support of those who love and care about you.

Teri said...

Rissa is right, they'll always be another reason to postpone it... I know it's scary, but what is 6 weeks of your life, to save your life?

Have you ever gone to a FORCE support group? It is intended for BRCA+ people but the last one that I went to had 3 ladies that had either unknown mutations, or mutations that were different from BRCA - I wish I could remember which now. Joi Morris, who commented on another one of your posts could put you in touch with one of them, as she's an Outreach Coordinator.. why not send her a message?

You really aren't alone - and we all get scared - or most of us anyway - it's scary things we are going through - it's perfectly normal.

I hope you keep your appointment. In the span of things what is 6 weeks? And that's a guideline anyway - it's actually 4-6 weeks, so it may be even earlier for you that you are feeling back to normal. I think recovering from chemo takes a lot longer... get where I'm coming from ?

You can do it, you can do it, you can do it!!

Teri

Beth Israel said...

Teri and Rissa - you have made very good arguments for now vs. later. I agree. Today the scale is tipping in favor of just being done with it all. Who knows what tomorrow will bring on this emotional rollercoaster. Thank you.

myblip said...

You'll find there are lots of opinions out there - just weigh them against your own, and made the best decision you can. I think that's what most of us do.

I'm not sure if one of my other comments went through, it seemed like it didn't. Since your comments aren't set up to post automatically it's hard to tell sometimes.

Anyway, a friend of mine from the BRCA Sisterhood group, Donna tried to comment here but was having trouble and she asked me to do it for her. She lives about 20 minutes from Boston and would love to get to know you. Her email address is: donna.casaletto@verizon.net . She hasn't been able to find any support groups in the Boston area which is why she was so excited to read your blog. So anyway, if you'd like to make a new friend that knows what it feels like to be in your shoes, and you can even meet in person for a cup of coffee or whatever, just get in touch with Donna. :)

Teri

Beth Israel said...

Hi Teri - I have been obsessed with doing my taxes for the last two days. It's a good distraction. I just posted your comments, sorry about that - still a bit new to blogging. I would love to reach out to Donna. Tomorrow I am walking away from my tax stuff and will focus on family, fun and a bit of blogging, so I will connect with her tomorrow. Thanks for keeping me in the loop.

Also wanted to thank you for your recent posts on your blog - you are a wealth of information - very helpful information.

On the cold feet side of things, I am still eating away - trying to gain as much 'excess fat' as I can. So, that's a indication that I am leaning toward the surgery. Oh, but it would be so easy to 'reschedule'.

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