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.