Week 2 - Day 4 (updated)

Last Week: Okay, so I am pre-posting this before I leave for Boston so that I can stick to my schedule of comparing each day last week with each day this week. Last Thursday was April 1st. Patty had called on Wednesday night to see if she could visit on Thursday since she had already planned to take the day off and come to Boston. I still wasn't up for visitors so Mike asked that she call back in the morning. On Thursday morning she called back, made the 3-hour one way trip and wasn't disappointed. Just after Mike left to take a walk to his hotel room for a shower, Patty arrived as did my entire 'plastics' medical team. She met Dr. Tobias, Maria and Dr. Curtis. I think Petrya was my nurse that day, so she also got to interact with her and help me take a walk around the nurses station. Thursday was a good day, a very good day. I wasn't ready to leave, but it was good. Petrya had helped me with my shower that morning and I felt a million times better. Remember I grew my hair long for the hospital stay, thinking I would pull it back or put it under a ballcap. Well, I can't lift my arms up to pull my hair back, but Mike did buy me a pretty BIDMC ballcap that he could help with. I am so proud of my 'team' at BIDMC that I wear my hat with pride!!! I must say that I am very proud of myself for being able to make the toughest decision of my life and have no regrets. Thursday was the day I got unhooked from the VIOPTIX oxygenation machine (hopefully I got that right). So I was no longer hooked up to anything that moved. I still had the drains and still had vitals taked every couple of hours, but was unattached. What a wonderful feeling.

I have posted pictures of me in my bed, where I spent much of my time, when not walking around the nurses' station. Here's another picture of where Mike spent most of his days. He did keep himself occupied with work, Suduko, Nintendo and some reading. I spent my time blowing into my spirometer 10x/hour. It did keep me somewhat occupied. Patty left some magazines which helped, but my eyes felt funky and reading was tough.  The calendar says that it is March 31st on the wall behind me, but it was really April 1st. I love my bouquet of flowers, too. They were nice and bright and cheered me up along with my visit from Patty.

This Week: This morning we are waking up in Boston at the Best Western, once again. Today I will see Dr. Tobias and Maria at 9am at Beth Israel. Since I am pre-posting I am assuming that I will be nervous and excited. Nervous because I have never heard anything short of dreadful when it comes to drain removal and excited because at least one or two of my drains will be removed. They don't really bother me, but this procedure puts me one step closer to full recovery. I will post pictures of today after we take them.

UPDATE:  So we made it to Boston on Wednesday evening just in time to get a quick meal at the cafeteria and then a walk down toward Fenway. I got a bit tired so we stopped to sit on a bench and watched everyone going to the game. I know how much Mike would have loved going the game!! Instead we watched people in 95 degree temps.

So, on Thursday morning we did a bit of a walk down memory lane. I will post pictures of the hotel, the hospital, the plastic surgery team!!  Here is the Best Western at Longwood. For the night before surgery, this is the place to stay (make sure you get a clean room with internet!). The next photo is of Mike with his cup of coffee. A week ago, he whe was trapped in my hospital room and didn't get out much. And, while he waited for me in surgery/recovery it was pouring so hard that he could't spend much time outside. Although I do undertand that he did take a long walk in the rain on one of those long days. The other photos are a bit jumbled and I can't seem to be able to move them to the right spots, so you will have match them up with the descriptions. One of the photos is of me (with four drains in my pockets) in front of the West Clinical Center at Beth Israel. That's where my surgery took place. That's were you go the morning of your surgery, sign in and wait with all the others having surgery that morning. You wait on a circular bench - reminded me of traveling with a tour group. There is also a picture of the hospital from outside my room. I had a great room (#620). From the inside I had great views and great sunshine pouring in.  Next are up-to-date photos of my "Plastics" Team: The first is with Dr. Tobias. It is actually taken in his office, oh, I am sitting in his chair!!! I am pretty sure most patients don't do  this, but then again most patients probably don't travel with a camera with the purpose of blogging either. Anyway, he was very gracious. I told him that the first picture with him the morning of surgery my eyes were closed so we needed an update photo. Next is a picture of my newest angel - Malika!!! Oh my!! She has always gotten me settled during each and every appointment to Dr. Tobias' office, but this was the first time she did something to/for me. I knew I would get my drains pulled today AND I knew it was supposed to hurt - like 20 seconds of torture. WELL, I DIDN'T FEEL A THING. Malika has magical fingers. On the first drain, after she clipped the stitch, I felt a little something, but nothing that would even it a pain scale. She had me take deep breaths, then told me it was out!!! On the next two, I didn't even feel anything. I took my deep breaths and it was over. Mike said that it looked like about 8 inches of tubing came out of me. How cool is that? Then there is a picture of me with Maria, Dr. Tobias' nurse. Again, I can't say this enough - she is a lifesaver!! She is able to diffuse anxiety and clarify, clarify, clarify when I ask endless questions and provide the kind of support only someone who has seen lots of other women go through the same thing can do. 

. And last, but certainly not least is Jean. Jean is Dr. Tobias' office manager. She was the first point of contact for me with his office and remains the voice on the other end of the phone whenever I call. She remembers me each time. I will post these 'staff' shots under "MY TEAM" as well. I can't say enough wonderful things about my team. It took alot of work to find them and I will forever be grateful for all that they have done and continue to do for me.

Week 2 - Day 3

Last Week:  Wednesday last week was a turing point for me. The paranoia had seemed to diminish, probably as the morphine left my body!! I had been moved to my room on CC6 (room 620) at Beth Israel late Tuesday and slept in the chair that night. Not the most comfortable night's sleep, but I remember not having it in me to move to the bed. They actually moved me from PACU to my floor in the chair, where I stayed until well into Wednesday morning. Then finally on Wednesday morning, I got to go on a walk with Jessica, the first of many wonderful nurses I had on that floor. Other things I remember from Tuesday night is my Aunt Kate calling, but not being able to take the call (sorry Aunt Kate!). I wasn't in any shape to talk coherently to anyone until Wednesday, although I do recall Mrs. Tremblay calling and having a nurse pass the phone to me and speaking with her. I am not sure what I said. It had been rough up until about midday Wednesday, which was the turning point. Later on Wednesday night, when Danielle was my nurse, a resident came in and told us that I would be released on Thursday morning. Mike and I looked at each other and asked if he was sure. Oh, he was pretty certain. That increased the stress level a great deal, until wonderful Danielle double-checked and said that I would NOT be released until Friday or Saturday. They would not kick me out!!!! I think they call that a teachable moment for the resident. Anyway, on Wednesday, I walked around the nurses station a few times and felt so much better. I also moved to the hospital bed in the room and was much more comfortable. Oh, plus the phelgm ball in my throat had dissipated and I was finally able to sleep. We all know how much sleep helps us to heal!!!! Let the healing begin!!! Wednesday was my first attempt at blogging. Mike had been blogging and when I go back and look at his posts I cry. I can't believe how tough his job was, not only with the waiting, but the worrying and then all the disturbing paranoia. He truly was my angel and still is. I could never have traveled this road without him by my side.

It seemed like the minute I moved into my room from PACU that I received a bouquet of flowers from Joanne, Jeff and Haley in Tampa. I can't remember if they arrived on Tuesday or Wednesday, but here is a picture. They made the room smell so wonderful.

This Week: We are headed back to Boston today for a follow-up visit tomorrow, so I don't have any hot off the press pictures just yet. I can only say that I am feeling 100% better than I did a week ago!! I will add photos of today after we take them and after we get home from Boston!!!

Week 2 - Day 2

Last Week:  Okay so last Tuesday was rough. I will post a picture from that day last week when I didn' think I would make it through the day - a couple of things were happening. First, I apparently have a sensitivity to morphine (long story) and I had a phlegm ball in my throat that I couldn't get up therefore I couldn't breathe. Not being able to breathe led me to not being able to sleep. Then between the lack of sleep and my sensitivity to morphine I had some pretty major fears. Mike just said that I did sleep on and off, but had such vivid dreams that I didn't think I had slept. Not a pretty picture. Here is a picture from last Tuesday morning in the PACU unit. Wow, as I look more closely at this picture I can remember everything about that day. The good news is that at least now I KNOW I have a sensitivity to morphine and with the best docs in the world we can work with that. I still another procedure coming up, but not for a few months or longer. The next procedure is shorter - maybe 5 hours, not 14 hours.

This Week:  Today is Tuesday, April 6th. I got up at 6am and got myself out of my own bed!!! Helped a little bit getting JieJie and MeiMei ready for school, then went to school to help out in the library. My regular day to volunteer is Tuesday and I wanted to see the Librarian, who has been so tremendously supportive throughout this journey. Her mouth dropped open when she saw me!!!! I do my best to tuck my drains out of sight, but that's pretty tough to do. Although I could help check books in, I still don't feel comfortable having lots of kids around me. One pull of the drain and who knows what might happen!!! Better not to test it. I was so happy to see everyone!! Here is a picture of me walking JieJie into school this morning. When we came home, Mike cleaned and drained my drains. Here is a picture of the drains from my perspective. The other picture is the fluid in the cups coming from each drain. I will get one or more drains out on Thursday!!!   

You remember the Feed the Flap party? Well, we are certainly benefitting from all the wonderful meals that we were able to 'seal and save' after the party. Last night it was Marcia's Beef Stew. Very Yummy. It's amazing how good it feels to eat food prepared by someone else when you are recovering or taking care of someone recovering. Thank you Marcia.

Week 2 - Day 1

This was me one week ago preparing for surgery. I had given the girls some prayer/wishing/meditation stones to hold and rub while we were gone. I also gave one to Mike and I had one too. Here I have put it in my eye just before they wheeled me a way. A bit of joking around lightened things up for Mike, I hope. And here is a picture of me yesterday at our Easter Egg Hunt!!! I was/am a bit hunched over, but not as much as I had been last week on my first 'walk' around the nurses station. This week I plan to post pictures from last week and a picture taken a week later. Today is Monday, April 5th. Last week this time I had been in surgery for hours and still faced hours ahead of me as well as night I never want to revisit. Today, I was told by my aunt that my grandmother had had serious reactions to morphine, hmmmm something to think about. Anyway Mike is home with the girls and I am going to go play!!!! Oh, I created a new page called "My Team!". You can find it at the top of the page, just under the photo of me with JieJie and MeiMei. There I have posted pictures of my fabulous medical team!!!

Day 7 - Happy Easter

Happy Easter!! This is almost a live post!!! I am writing it at 8:45pm the night before Easter. I feel great. Still needing pain meds, but it remains at a level 1. I am standing up much straighter. Mike is a whiz at draining my tubes. Showering is far easier than I expected. The marsupial pouches help alot with that.

The girls, Mike and Aunt Dot will head to church in the morning in their pretty new pink dresses. I plan to take some photos if my new camera isn't too heavy. I have weight limit of 5 lbs.  No driving for a while. I have been so lucky to have Mike's sister Dot, her husband Don and his sister Sally here all day. They have helped with the kids, food prep, ..... Mike says it's time for drains and pills so I can't make him wait. Happy Easter!!!!

Day 6 - Coming Home

If today is Saturday, I should either be going home or might even be home already. I think I can honestly say that this has been the longest week of my life. The toughest week for me, but also for two little girls who have been waiting for us to get home. If I am home, then I shouldn't have to go back to Boston until Thursday. The ride is a bear, but to get top notch medical care you do what you have to do (IT REALLY WASN'T A BEAR - THAT WAS WRITTEN EARLIER). This picture was taken with my new camera - a Nikon D5000 with a really cool lens. The camera does so much more than simple point and shoot and my game plan is to learn what all the little gadgets on the camera can do. Tomorrow is Easter and I hope to be up enough to get some nice photos of the girls - as long as the camera isn't too heavy!!

UPDATE:

First night at home was very successful! Slept well on the hospital bed. Mike again slept on the 'cot' in the playroom. Girls have been very very good. Jaelin was up to seeing my drains - she is so much like Mike and his sisters - nothing grosses her out. Dot has them out bike riding right now and Mike is getting me some more medicine at the pharmacy. My visiting nurse is coming by this morning to check me out, but I think things look good!!! Aunt Red is here....gotta run!!!!

Day 5

Today is Friday. Either I will be out today or tomorrow. Since we live four hours away they will probably keep me one more day. Plus the better shape I am in the better the ride will be for DH. At our pre-admission consult with the PS, he wished DH luck on the way home. I had just exhausted him and his nurse with four pages of questions from pain to breast size to pain back to breast size. He never changed his answers. It was only my questions that changed. I like that about him - never over promising. The deal is that he would rebuild my breasts with my 'fat flap' and the unstated, would do a remarkable job. Hopefully it all took.

UPDATE:  We are home!!! Mike just finished emptying my drains. Aunt Dot did a remarkable job of watching our 7 year old who seemed to grow up in just a week and our 4 year old who seemed to totally fall apart in just one week. We are all getting readjusted to the new mom. They've played on my hospital bed. They want to see the scars, but we are holding off on that for a while. I have to still get used to them.

The ride home was so much easier than expected. We stopped at Mike's sister's house in Freeport for a break then got home about 3:30. The girls and Aunt Dot had made a special cake for me with strawberries and we have been sitting in the sun on the patio.

We plan to continue to blog to recount some of the highs and lows of the whole experience. I am happy. I picked the perfect team at Beth Israel and other than a rough ride with anesthesia it was uneventful. Getting up for my first walk was the highlight along with the first shower and the first good night's sleep.

For now I am going to head out to catch the last few rays of sun before we all sit down for a lobster dinner!!! Thanks to all the doctors, nurses and staff at BIDMC.

A very good day!!!

My friend from 2nd grade visited today. Last night I was not sure I was up for visitors, but it was just the right person at just the right time. She may have seen more of me than she expected, but if you can't share johnny moments at times like this what can you share. She also got to meet my 'team'. They are wonderful and really boosted by spirits with their visit. Everything seems to look very good. Still getting lots of laps in. They even unhooked the machine (sorry Maria I can't remember the name of it). Other than four drains that are sucking fluid from my body, I am cord-free. Progress.

Mike went out and bought me a BIDMC hat. I am so lucky to have found such a great medical team, I will wear my hat with pride.

When I get home I will start putting pictures in the blog. Mike has taken photos every step of the way, even when things didn't fell very good. It is bright and sunny in Boston. Life is good again!! And my risk for breast cancer is 2%. Pretty good I'd say.


Again, even though I haven't been able to read your posts, I will when I get home. I am on a  little netbook that is very tough to type on - especially with swollen fingers (which are not swollen any more).

Day 4

Good morning!! The pain should be less from here on out. It won't go away, but if I know it is going to decrease each day and someday (maybe 5 weeks from now) will disappear or at least dissipate then I can deal with that. Hopefully I will be able to blog live today.

I miss my girls more than anything in the world. I am so proud of them. They have never been away from us for more than one night before our trips to Boston. Thankfully, Aunt D is with them and taking very good care of them. One of the toughest things when I get home will be not picking them up and probably being very protective of my incisions. We have practiced what Mom will be like and they know that they can cuddle, but not give big 'front' hugs just yet. I can't even imagine what is going through their minds. They are so wonderful - these little girls who joined our family from half a world away. I can't imagine my life without them.

I feel good

Okay so this is a pretty rough ride. But I just took a shower and feel like a person again. Have been doing laps around the nurses station. Put on lipstick. Awaiting a visit from Patty. Things are looking up. Maybe tomorrow we can come home. Mike has been unimaginably helpful every step of the way. When the nurses didn't come when I had to pee in the night he unhooked all the machines and got me in all before any help arrived. He is amazing. I'll post later. Thanks for your prayers there were times when that was the only thing getting me through this. Keep em coming.

Thursday morning

Joan's really determined. It's just 5:30 am and we've already been up for a walk. She's started her breathing exercises as well. She seemed to get a good nights sleep. I'm still adjusting to the cot. Today's schedule includes a shower for Joan. I know that she's excited about that. Oh, one more highlight of the morning, freshsocks! Joan thought that 3 days with the same pair was enough.

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.

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.

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.

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.

'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.

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.

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.

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."

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 .

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

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.

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!!!

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.

"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.

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.

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.

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!!

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.

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!!!