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.


Wednesday, March 31, 2010

Joan's been great!

Joan has been working hard today.  Trying to clear her lungs with breathing exercises and going for walks.  She tires quickly, of course, but, she's really hanging in there. The Doctors are quite pleased with her progress.  We may get home as early as Friday!  Tomorrow is a test day.  Joan will be left somewhat on her own to get by, with help from me.  They want to see if she can get by at home.  I'll let you know how she does.

finished dinner

Been up a few times. had hot turkey dinner. doing okay. still got groggy fingers. thanks for the flowers joanne, jeff and haley. brightened my room, thanks for all the calls I am still not up for conversation. hopefully tomorrow.

almost time for dinner

feeling a little bit better. fingers working better. hot turkey dinner coming our way.....did four walks around the unit today. still getting used to tubes. mike is learning to drain them. couldnt have asked for abetter nurse.

Day 3

Well today is supposed to be the worst day of all according my PCP's nurse. The pain will hit hard, although my plan is to stay well ahead of it. Now where's that pump? I will be forced to do more than sleep. DH might just see that evil "I don't want to get out of bed" look. It won't be the first time, but it just isn't pretty. My abdominal incision goes literally from hip to hip. This is supposed to be the more painful of the incisions initially. The best thing for me to do today is to breathe into the spirometer and get out of bed. The more I move the more quickly I will recover and the sooner I can come home. The gameplan is for me to stay in hospital for five nights, so 2 down, 3 to go.

Today is also the day that I will second guess my decision to reduce my breast cancer risk. I can hear me now. Again, not a pretty sight. Hopefully DH will go out and get me something gooey and chocolate today. Hmmmm, I can't have caffeine (in the chocolate), so not sure what he will bring back to make me happy again!!! The hospital's beef pot pies make me very happy if chocolate isn't allowed. I have tried to make one like their's, but just can't seem to get it right. Maybe I should have packed some starbursts or tootsie rolls (I don't think the chocolate counts in those). So, hopefully today will pass quickly and I will be beyond the pain.

It's me

I've taken a walk. Up! Getting over the hump. Miss everyone - especially my sweet little girls. Fingers are not working great.

Joanie's first walk

We've had an exciting morning. Joanie's been disconnected from most of the rigamole they had hooked up. She then got up for the first time and we took a wonderful walk around the floor. She said that getting out of her room was almost as nice as Christmas. Her Phlegm seems to be clearing up. Her morale is improving as well. Oh, and I got to empty a drain for thr first time. Great times!

Wednesday morning

Joan looks tired and she's sick of the phlegm. She can't get comfortable as the phlegm makes breathing hard. It seems like having a presistent cold in her throat. Now the good news. Her body is dealing very well with the surgery. We'll be getting her up and walking around today. I spent the night on a cot in her room. I think that it was comforting to both of us. Pretty tired today though.

Tuesday, March 30, 2010

Surgery plus one

It's Tuesday evening. I'm in a hospital room with Joan. I apologize for the delay in updating. I had some internet issues. Joan came through the surgery just fine. The Doctors say everything is going great. She is having problems with a phlegmy throat from 12+ hours of intubation and is having some issues with the pain medication. She's not in much pain, just a little fuzzy. I will spend the night here to keep an eye on her. She does relax more when I'm here. A wonderful phone call with the girls helped alot too.

Day 2 - out of surgery

I can only write so much ahead of time. But from what I understand, I will be moved to my room this morning after a long long long day/evening of surgery, then an overnight in recovery. I am assuming that I really do feel like I have been hit by a train, so blogging won't be on my list of things to do just yet. Today they will expect me to get out of bed. If I can make to the bathroom then the catheter can come out. I certainly hope I can do it. I will have other tubes in me for a while. They are surgical drains that I will actually bring home with me. Necessary evils. But, I did get a new jacket from the PS's nurse that will hold my drains while I walk around at home. It looks like a blue blazer - very upscale. My plan was to wear zip-up sweatshirts. Instead I'll be very stylish.

My friend Jenny reminded me that I needed to make sure that everyone who touches me has washed his/her hands. So I have created a couple of signs that I have laminated (so that I can wipe them down) to hold up when I don't feel like talking. I understand that there will be steady parade of on-lookers, touchers, pokers, etc. I can clearly remember when MeiMei was in the hospital that they spent alot of time in the middle of the night checking on her. Must be a pretty normal thing.

Monday, March 29, 2010

Surgery Completed

Well, it's 10:24 pm and I'm just back from the hospital. Dr. Tobias called at about 9:40 and said everything went well. Joan was a little agitated coming out on antithesia, but, they say that's not unusual after a long surgery. I went over and was allowed a few minutes with Joan about 10:10. She was not awake, but, looked okay. I will check in on her first thing in the morning.
This has been one of the longest days of my life. I know the Doctors and medical personnel here are first class, but, that's my DW their working on. And there's nothing I can do except wait. I'll try to rest tonight. Tomorrow we start the slow process of recovery.

5:45 pm, Still hanging in there

I just received a quick update from the hospital. Dr. Tobias is still working on Joan. They report that it is going well, but, they still have a ways to go. I will hear from the Doctor when they're done.
Long day. Went for a walk in the rain, just to get out. More later, have to Skype the kids now.

6 hours down, 6 more to go!

I am hanging in there.....of course I am not really posting this midway through my surgery!! But, if I could, Iwould let you know that I am doing just fine.....although I do worry about the people who are worrying about me. Just keep praying that my surgery will continue to go smoothly.

Pain....this issue keeps popping up for me. In several hours I will be in the midst of pain. Not something I am looking forward to, but a necessary evil to be rid of my high risk. Well, back to being a patient and getting on with my life and beyond the pain.

Hang in there DH!!!! I love you. And please give my love to my beloved, darling, wonderful little girls. Let them know that as soon as I can I will talk to them. I love you.

Today is the day.....

By the time you are reading this, I will be in surgery. It will be very long day for DH (dear husband for non-bloggers). He has been such an inspiration to me. Never once did he complain when I said, "Well, there's this doctor in Portland that was recommended" or "What about looking at Boston?" or "I found this doctor online that everyone raves about." or "Maybe we should check with just one more plastic surgeon." or "I don't think I will do anything." or "What if I didn't do reconstruction?" or "What if we do this when I am 60 instead?" This journey has been more like a rollercoaster and DH has been on the ride right beside me. Believe it or not, he wants me around. Although I know that this past year and a half has been very hard on him, he has never once told me what to do or to hurry up and make a decision. I could always see the love and concern in his eyes. I have never been more appreciative of anyone in my life than DH. His sister, who is watching over my beloved JieJie and MeiMei runs a close second!!! Their mom certainly did something right in raising these wonderful, loving, caring, supportive people.

In addition to being on the ride with me, DH has also carried the ball at home when I was obsessed with researching "just one more thing" on the internet late into the night. My way of figuring out what to do is to gather as much information as I can possibly absorb and then some. Once I had taken in just about everything I could about LCIS then I started talking to doctors and then I started talking to old friends and new friends (I won't name you, but you know who you are) who have taken this path before me. It was much like a puzzle. Each little piece fitting into the right spot at the right time.

By the time I walked to the hospital this morning I was confident in my decision. I had the facts. I knew the risks of both having surgery and not having surgery. At times that decision felt like the toss of a coin. But I can honestly say that each time I thought about backing out, it was only to pick a better time, never to walk away and wait.

I can't say that I wasn't scared this morning. Probably as scared as I have ever been, but I am truly in good hands - the best. But, I would still appreciate all the prayers and happy thoughts you can send our way.

Half way there

Dr. Houlihan just called me. Joan is very stable and came through the first half of the surgery without any problems. She also said that Dr. Tobias was encouraged by what he saw and didn't see any issues with the reconstruction. Dr. Houlihan finished her part at about noon. She still thinks it will be around 8:00 before they are finished. LONG DAY! I've spent the morning moving half of my belongings to hotel no. 2. Not as close to the hospital, but, a time share, so much less expensive. Now I just wait and wait.

9:43 am Monday morning

It's 9:43 Monday morning. Joan's been in surgery for about 2 hours now. She got a good night's sleep last night. Me? Not so much. I think that I was more stessed than she was. We were up at 5, arrived at the hospital at 6, and were meeting with Docs at 6:30. They took a purple pen to Joan. (Ani would have loved the color!) She got her first relaxing medication at about 7:25. She was wheeled out for surgery about 5 minutes later with a big smile on her face. She looked like a queen being escorted to the ball!!
I get to wait and wait and wait now. The Doctors said that they'd call me. I'm back in my hotel room. There wasn't much of a waiting room at the hospital. I'll keep updating as I get more info.

Sunday, March 28, 2010

10 PM - 8 hours and counting...

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It's getting close. I really am ready. Poor DH. He got really stressed out when I asked to change rooms. He had unpacked everything that he needed for his stay, but I just couldn't stand such a nasty room. Oh, plus there was no internet!!!

Tonight's project was to shower with some special antiseptic soap and scrub my incision spots for 3 minutes. Will be repeating this at 5am tomorrow. Still pretty surreal. But by tomorrow night at this time I should be out of surgery!!! A friend who had this surgery a few months ago didn't get out until after 11pm (7:30am - 11pm), so DH is prepared for a long day. At least he has a much nicer room WITH internet.

DH has started blogging. I can't wait to read his posts when I wake up. I thought I would be much more nervous than I am. Last night talking with my friend who did this 8 years ago really helped. Again, thanks to all my friends who have been soooooooo supportive throughout this journey.

It's time to go spend some time with DH. He really has a tough job right now. It's hard to imagine the wait he has to endure, then a long recovery period. He truly is a godsend.

9:38 pm Sunday night....

9:38 pm Sunday night. I hope that we're settled in. We are in our 3rd hotel room. Okay, the 1st is downtown, but, we've hit 2 at the Best Western. First was dirty and had no internet connection. I think that Joan was more concerned with the lack of internet. We were unable to Skype the girls. We did have a nice phone chat, but, it isn't as nice as being able to see them. I'll try to get Joan to relax tonight. So far, I seem to be more stressed then she is.

Saturday, March 27, 2010

'Twas the night before surgery.....


Well actually it is the night before the night before surgery. But it is my last night at home. A friend called who has walked this path before me and was exactly what I needed. She made me laugh. I have known her since I was 5 years old. She is wonderfully funny and is always able to put things in perspective. When she had breast cancer she didn't miss a beat. She was in treatment and back to work without anyone even knowing. What an amazing woman. I still have in the back of my mind that whole thing about feeling like I have been hit by a train. Well, my friend would just expect to stare that train down and have it stop in its tracks.

Another friend told me that I would be coming home to the same life, the same family, the same friends that I am leaving. That was also just what I needed to hear. There was a very strong part of me that felt like I was marching off to my death. Okay, so maybe I have obsessed a bit too much on all the risks of surgery. I would list them, but that would just be way too entertaining. Well, I do worry about losing a tooth..... but as long as they pull that tube straight out I should be okay.

Tubes....tubes down my throat, tubes to pee through, tubes to drain my wounds. Lots of tubes. Luckily I will be asleep when they insert these things. Oh, at least I think I will be asleep. The pulling out of the tubes, not so much. I will get to be a party to that and will let you know exactly what that is like.

I am ready!!

Ready to go....

The lists are made. The clothes are packed. The Marsupial is packed (only those who have had to wear one of these will understand). Throat lozenges are packed and ready (oh, I dread that tube). The computer is charged. Did I say the lists are made - oh, yeah. It might take all week for my beloved sister-in-law to read through the lists for each day. She's a good sport though.

Work is now officially shut down. Thanks Jen for the advice of "Shut it off. Shut it down.". I probably didn't do that soon enough, but now it is official. It has been very hard letting go of work. But now that's done.

Early Friday evening I spent time with my aunt at the racino. I thought one of us would win, but not this time. We have a date for when I get back. Winning is so much more fun than losing. Then all of us spent Friday evening with friends (playing Qwirkle) which was a great diversion from everything that is going on right now. Plus they gave us enough food to last until we leave.

This morning was hard. It is the last official day at home with my original body and all it's parts. Still seems pretty surreal that parts of me will be gone this time on Monday. In two days!!! When I think that way the fear creeps in. Well it doesn't really creep, it floods the gates. The tears are pretty close to the surface, too. Some friends have given me some very thoughtful gifts and I am so overwhelmed by their thoughtfulness that the tears just start streaming down my cheeks. I am simply amazed by my friends and my family. I couldn't ask for a better circle of people around me.

Tomorrow we will head to church for Palm Sunday and to listen to JieJie sing in the Children's Choir. I can't think of a better send-off than to listen to the voices of angels as we head off to Boston.

Friday, March 26, 2010

Things I am looking forward to.....

It's been a very long year and a half since we started on this journey. During this time I have prepared in so many different ways, some so that I would healthier going in to a rather lengthy surgery and some just very superficial. So, when I am back home and on the road to recovery these are some of the things I am looking forward to:

1. Cutting my hair. I have been growing it so that I can pull it back in the hospital when I can't wash it and not worry how awful it looks. (yeah, pretty superficial).

2. Drinking coffee. I gave this up months ago. Caffeine constricts blood vessels and since the surgery is all about connecting blood vessels from one part of my body to another, I thought it would be good to quit. Plus the deal is that after surgery I can't have coffee for 6 weeks anyway. The last thing I wanted to add to my recovery is withdrawal from caffeine. But what I wouldn't give for a coffee coolatta about now.

3. Eating like a normal person. For months now I have been 'feeding the flap' trying to gain and keep weight so that the plastic surgeon has enough material to work with. I can't really complain about the food - it's been great.

4. Having a glass of wine. Not a big deal, but would like to watch Survivor one night with a glass of wine. (Okay, superficial).

5. Not worrying when in a room of people coughing and sneezing. Now typically I don't really notice that type of thing, but when you really don't want to get sick you can't help but become a bit paranoid. If I get sick before the surgery it will have to be postponed. It was postponed once already and that really freaked me out.

6. Not thinking about surgery looming in my future. I think the biggest relief will be having this behind me. It is hard to wrap my mind around the whole idea of  having a 'tough couple of weeks'. I don't like pain, but if that's what I have to endure to reduce my risk to 2%, so be it.


Wednesday, March 24, 2010

Time is flying.....

Oh, to have time slow down. I have been so busy with tying up loose ends with my work that I haven't really had any time to think. I still need to pack, not that I will need alot in the hospital and not that I can't get what I need, but I like to have what I need with me. Things like chapstick and throat lozenges (for when the tube comes out) are probably things I will not want to wait for. Patience isn't my strong suit. I still have so many little things:
1. Make lists and shedules for Aunt Dot.
2. Pay all the bills for April.
3. Go shopping for food for the week (special foods) and things I will need.
4. Thank friends and family for everything they have done so far. (Thank you!!!)
5. Write out cards to the girls for each night that we are away.
6. Check JieJie's teeth to make sure nothing is loose.
7. Make a note for the teacher with names of friends who may pick up JieJie.
8. Finish my will.
9. Pack!
10. Read my "Preparing for Surgery" book before Monday!

Well, I better start working on my list. Details, details, details.

Monday, March 22, 2010

Next week this time.....

Next week this time I should just be getting out of surgery.....this morning at 5:30am I fast forwarded to next Monday and thought, "Oh I will be walking to the hospital next week this time." Then when I was driving home from Rockland today at 2:30pm I thought, "Oh, I will still be in surgery." Then when I went to JieJie's Art Show tonight at 6pm I mentioned to a friend, "Oh, I will still be in surgery next week this time." Now it is 8:50pm and I am thinking, "If all goes well I will just be getting out of surgery." It is so hard to believe. But I will be on the other side of the surgery. The healing journey will begin. I can't even describe what it is like to choose this type of surgery just so you don't have to live in the shadow of breast cancer.

Waiting is tiring....waiting to get the results of my first, second and third biopsies. Waiting for consultations with breast surgeons, oncologists, plastic surgeons. Waiting for just the right team. Then after making the most difficult phone call of my entire life - the one to schedule my surgery, a different kind of waiting began. Waiting for March 15th......then waiting for March 29th.

Seeing the fear in the eyes of those around me is tough. How do you look at a little 4 year old who doesn't really understand and not see the fear? How do you tell then how you will feel when this whole deal seems unimaginable? This is when you want to just wake up and realize it is just a bad dream. But no, the clock keeps ticking, but the waiting is now getting very short. Part of me wants time to stand still and the other part wants time to fly by.

So, one week away from surgery and I am getting nervous.....but when I wake up tomorrow I will be able to say, "Next week this time my surgery will be over, the waiting will be over and the healing will begin."

Sunday, March 21, 2010

Party Time!!

Today we hosted our once-in-a-lifetime FEED THE FLAP party with our friends from near and far. The food was exceptional. And we saved the leftovers for when we come back from Boston. We won't have to worry about cooking for a few nights AND we will think of our friends as we revisit their meals! To have so many of our friends be part of this journey has really bouyed me as I enter my last week with my 'originals'. It truly was wonderful to be able to spend time with these friends. I thought I would have more time to talk with everyone, but it was alot like a wedding reception. It was over before I even knew it. Although the time flew by and lots of very delicious food was consumed, we did find time to take a few spins on my favorite toy. I took pictures of friends on The Green Machine, but promised not to post them. But here is a picture of it. Every morning MeiMei and I play in the driveway with our riding toys. I will miss riding on this while I am recovering. BUT I will certainly ask the doctors how soon I will be able to .

Friday, March 19, 2010

Feed the Flap Party!

My "Feed the Flap" party is this weekend. I am excited and scared at the time. Excited to see everyone and to eat all the goodies (it's potluck). Scared because this is the last weekend in my life that I will have my original breasts. Excited to have all this behind me and get on to my real life. Scared because this is a choice I am making, not something I am immediately forced into. Excited to recover at home with DH for 6 weeks. So I guess when I look at this list that I am more excited/anxious than scared.

When I think of my original breasts, I am reminded by those who have been an inspiration to me that my new breasts will be my "new normal". My new normal will come with a 2% risk of breast cancer. I am okay with that. No more mammograms, no more MRIs, no more belly fat (yeah).

Once I was diagnosed I became a member of a very special 'sisterhood'. I can't tell you how helpful my 'sisters' have been. Friends from Kindergarten, friends from college, friends in town, friends of friends, online friends have all been tremendously supportive and encouraging. They all have spoken of being brave and courageous. Those are not words that I would typically use to describe me, but they are words that others have used. I am doing this because I don't want to have the cloud of breast cancer hanging over my life. I want to move on and enjoy my DH and beautiful, loving daughters in a carefree way - the way life was before my diagnosis of non-invasive breast cancer.

This is a quote from a BRCA sisterhood facebook letter (thanks Karen & Teri) - I really like it.

A woman is like a tea bag - you never know how strong she is until she gets in hot water.

-- Eleanor Roosevelt

Thursday, March 18, 2010

Breast Replacement Surgery

A new way of looking at mastectomy and reconstruction is "breast replacement". (Thanks, Debbie for the links.) I like it. When I think of mastectomy I think of my mother. That was way back when you went in for a biopsy and if it was cancer, came out without a breast. Today's mastectomies are typically skin-sparing or nipple sparing. For me, I get to choose. Reconstruction, either with an implant or with your own tissue is pretty common. I am choosing to use my own tissue (flap).

If all goes well, I will wake up after 12+ hours of surgery, with breasts. Yea, it's actually my own fat, but it works for me. My friends are coming by on this Sunday to help me "feed the flap" for my once-in-a-lifetime "Feed the Flap" potluck party.

So, back to breast replacement surgery. That's really the picture I want to paint for myself. I think all my life I will think of mastectomy as the scarred chest of the brave women who went before us. I can only wonder what will be available to our children if they are faced with the risk of breast cancer, hopefully a cure is just over the horizon.

Wednesday, March 17, 2010

So little time.....

It's hard to imagine how upset I was when my surgery got rescheduled from March 15th to the 29th. Right now I am soooooo appreciative that I am feeling great and being productive. I never could have done all the things that need to get done. Here's just a sampling:

1. Girls need Easter dresses and shoes

2. Easter Baskets need to be put together

3. Make little gifts bags for JieJie and MeiMei each day that we are away (thanks Brenda!)

4. Make reminder lists for Auntie D of homework, school projects, swim lessons, tennis lessons, choir practice, Brownies, etc.

5. Contact PS's office to make sure I can take a sleep aid the night before surgery.

6. Clean my house and make something for my once in a lifetime "Feed the Flap" party

7. Tie up loose ends for my business - not sure I will ever be able to do this

8. Organize the things I will need when I get home to make me very very comfortable (pillows!)

9. Teach DH how to blog!

10. Kiss, hug and hold my family really really tight!!!

Saturday, March 13, 2010

Others say it so well....

As THE day grows near I find myself reading blogs of other women who have walked this road before me. This is a link to an excerpt on a blog I have enjoyed reading:  Click Here.

Friday, March 12, 2010

"Shut it down. Shut it out."

This is exactly what I needed to hear. I run my own consulting firm and have a tendency to obsess on my work. I don't have regular hours and can be found on my computer at all hours of the day. And I will bend over backwards for my clients. But I am feeling some stress right now with my surgery date quickly creeping up on me. There are so many things I need and want to do before I head into surgery.

Since this all began I have connected with several wonderful women who have been tremendously supportive throughout my rollercoaster of decision-making and with the details of the surgery, hospital stay and recovery. But last night I spoke with a woman who told me to "shut it down, shut it out." And that was just exactly what I needed to hear at that point in time. I was contemplating squeezing one or two more clients in before my surgery, but have re-thought that and will refer the clients to a fellow consultant who has agreed to cover for me while I am out. I feel guilt about that, but her advice really hit home and will free me up to enjoy my family and pull some loose ends together.

Thursday, March 11, 2010

Day 2 - Pre Admission Testing

On Tuesday I met with the PS and his nurse. Although my appointment was for 8:45 we didn't leave his office until 11:45. The first hour was just waiting with my 'gown' on....waiting so long that I took a little nap on the table. I practiced laying down with my arms out straight to test my frozen shoulder. It appears that it shouldn't be a problem - even if it is in this position for 12+ hours.

For quite some time his nurse answered all my questions. I must say that my PS's nurse is the best I have ever seen. She was able to put my mind at ease, made it seem doable....she may have noticed from my questions that I am afraid of PAIN. I asked so many questions related to it, that it became quite funny. At some point I will include a FAQ section on my blog to serve as a reminder for me, but also as a helpful tool for others moving down this road.

When I asked how I would feel immediately after waking up in recovery. The response, "like you got hit by a car." or was it train? That freaked me out about as much as the possibility of losing a tooth when my ET tube comes out. In the end, she and the PS were very supportive, but also very clear as to what to expect. I was hoping to be the same size, but that won't happen unless I have more 'flap' to offer. Sooooo, I am working on 'feeding the flap' from now until March 28th.

Oh, Boston is such a lovely city this time of year. The buds were coming out. The sun was shining. We walked and walked and walked. Very nice. We also did a trial run for DH, who will be staying across town all week if he doesn't like sleeping on a cot in my room. He's afraid he might need back surgery if he sleeps too many nights on the cot. I was so surprised and happy that that was even an option. They prefer that their DIEP patients get a single room, so that's how it is possible to have DH in there with me.

At this point I am still pretty scared, mostly about the pain and a little bit about appearance. But tonight I will speak with a woman who had this surgery done last year who understands LCIS and the nature of 'elective' surgery.

Monday, March 8, 2010

Day 1 - Pre-Admission Testing

Aughhhh....one day down. Don't get me wrong, pre-admission testing really isn't a big deal, BUT when things don't go as smoothly as you had hoped then it becomes...augghhhhh. It started as a beautiful day in Boston, fairly warm (30 degrees) and sunny. Felt like spring. DH and I walked around the The Fens - about an hour of brisk walking. So wonderful.

Then headed out for my first appointment - the autologous blood donation. WELL, it just didn't work out. After several attempts at getting the size 16 needle into each arm they gave up. I was willing to have them root around a bit more, but they knew it just wasn't going to work. So, they settled for getting blood from my hand for the lab work - very small needle that I barely felt it.

Next a great lunch at the hospital cafe. The best chicken pot pies and clam chowder around. We headed over to see the breast surgeon, BUT she was still in surgery, so we went to pre-admission testing.

Pre-Admission testing consisted of an EKG, vitals, a meeting with an anesthesiologist and a nurse. The anesthesologist was super. She has attended several BM + DIEP procedures, so was quite helpful with firsthand information. She told me all about ET and LMA tubes - sometimes I get too much information, but I would rather know stuff ahead of time than later.

The nurse was good, took lots of info from me. She crossed all the T's and dotted all the i's. She gave me a bottle of soap that I need to use both the night before surgery and the morning of surgery. And to think I had already gone out to buy Dial soap, which they had recommended in their pamphlets. So much for planning ahead.

After PAT we went back to see the BS. She squeezed us in and was very attentive and focused during our discussion. Still exhausting knowing that you are one step closer to really having this surgery.

Now I am just tired. My arms are a bit sore from all the rooting around, but not a big deal. We are headed out to visit with some friends we haven't seen in over a year. I might just fall asleep before we leave.

Tomorrow we see the PS and his nurse, who I understand is the key contact person. She has already been very helpful by connecting me with another LCIS person who had a BM with DIEP.

My impression at the end of the day is that nothing is black and white. Why I would expect any more than that I don't know. From the start this whole decision of 'do I or don't I' has been mine to make. So, when I ask about what to expect from any aspect of the surgery I get the very gray answers stating that everyone is different. BUT at the end of the day, my bs did say that she thought I was making the best decision for me. I didn't need her endorsement, but it certainly felt good. You can't get to this point without some doubts, but it does make sense that my doctors and I are on the same page. Oh, I did decide to do skin-sparing vs. nipple-sparing mastectomies. Seemed like extra insurance, but I could change my mind.

Sunday, March 7, 2010

Pre-Admission Testing

Heading to Boston for pre-admission testing, blood donation and consults with both BS and PS. I will update after all of these appts. Just want to send my thanks to everyone who sent me emails about what to expect, what to ask and how to be assertive during the consults with my 'team'. Thank you, thank you , thank you. I have my notes all packed. This will serve as a good trial run for the real thing in 3 weeks. Getting nervous, but determined!!

Friday, March 5, 2010

Preparing for Sugery

Today, I picked up a copy of this book. A new friend told me about it. The idea is to connect mind and body to enhance healing. Since I will be cut from hip to hip as well as having  both breasts removed I think I could use as much enhanced healing as possible. I am actually very excited to read it.

I did make an Amazon book list (see sidebar on left) of all the books that I have read and that have been helpful. I love books. They have gotten me through lots of different events in my life, from career changes, to international adoption to exploring options in breast cancer reconstruction. So, I thought I would share these resources with you. There are hundreds of others, but these are the ones that have helped me so far. If you have any suggestions I would love to read them.

At this point I am looking for all the positive reading materials I can get!!!

Emotional Rollercoaster

Oh, the poor secretary at JieJie's school. When I told her that JieJie's aunt would be dropping her off and picking her up next week, she thought that DH and I would be going somewhere fun. When I told her what we were doing I almost cried. I felt bad for her. She may never make small talk again after that and she is such a delightful lady!!!

So, it looks like the emotional rollercoaster is still there. A part of me had thought that since I am committed to the surgery that I had moved beyond the sadness, but maybe I am moving into it. I don't know.

When I heard myself say that I was having a bilateral mastectomy it really hit home. Me? Why me? I've said this before, but I can honestly say that early detection is a two-edged sword. It's great because I have information and can take the time to make informed choices, but it's awful because I have the time to gather information and make informed choices. My friends who have journeyed through breast cancer, surgery and treatment as well as the majority of doctors I have seen are on the side of never letting breast cancer take hold. My BRCA friends are with me on this and understand the uniqueness of our position. Although I am not BRCA, we travel the same high risk road. Then there is that one lone oncologist who told me to wait until I got 'real' cancer. She certainly planted doubt in me, but in the end it is my life, my body, my choice.

So, this morning for a few moments I was sad.

Wednesday, March 3, 2010

I'M IN

Okay, so I had cold feet for a while. During that time I really thought I would back out for lots of good reasons, but several things have me moving forward:

1. My daughters (and DH) really need to get this behind us. It's like this huge thing in our lives and we can't move on until we get past it.

2. I spoke with 2 old friends who have BM, node biopsies, chemo...... They truly convinced me that being aggressive now is a whole lot better than waiting until I get 'real' cancer as advised by an oncologist at a high risk bc program at a teaching hospital. Of course, it's the flip of a coin whether on not I would ever get invasive cancer, but I don't like the odds.

3. My 'flap' is growing. I have been very focused on 'feeding the flap' and would like to get back to a normal size for me. But, the bigger the flap the bigger the breasts. Don't get me wrong. I will certainly not have huge breasts, maybe a full A cup if I am lucky. BUT, I want the DIEP procedure versus implants, so I have been doing my part to make that happen.

4. I am ready!! I am committed!!

So, I'm in!! I also couldn't have gotten to this point without all my friends, my online friends and my family. I am sending you all my love!!!
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