Wednesday, March 31, 2010
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
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.
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.
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.
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.
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.....
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.
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...
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.
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.
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).
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.
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."
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
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.
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!!!
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."

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.
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.
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!!!
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.
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!!!
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!!!
Thursday, February 25, 2010
Cold Feet?
I am not sure where this feeling came from, but yesterday I got really cold feet about my upcoming surgery. I still want the surgery, but am thinking that it might be better for me if I wait until the fall. I hadn't realized that I wouldn't be back to normal in six weeks. With summer coming I have so many things I need to be able to do, like living at my camp with my two daughters, while DH is two hours away. I don't have any help up there, so maybe the timing just isn't right.
Oh, to have a crystal ball. Wouldn't it be so much easier to make these decisions if we could only foresee the future? Putting my surgery off by 6 months wouldn't change the risk. With LCIS my risk increases 1% each year. The risk is that if I put it off I may never get back to rescheduling it.
I do find it interesting that I am questioning my decision to move forward. When I make big decisions I typically do this type of waffling. I like to know that there is an 'out'. BUT with a decision this big, I was surprised that I am rethinking my decision all over again.
One thing I did do was contact my PS's nurse who is going to connect me with a past patient who had all the same things going on that I do: LCIS, PBM, LCIS and lives a distance for the medical center. I am looking forward to speaking with her. This may be the piece of information I need to feel confident in my decision.
People with LCIS are in a unique situation. We don't have invasive cancer. What we have is a marker for increased risk of breast cancer in either breast with that risk increasing by 1% each year. 20% of in situ cancers are LCIS, so we are not in the majority. I know of lots of people with LCIS (from breastcancer.org), but I don't know anyone else in real life. So a big missing piece for me is talking to a real live person who has had the very same diagnosis as me.
At this point the best matches for me are my BRCA+ friends. They have been so supportive of me and my upcoming surgery. It doesn't matter to them that I am not BRCA+. They know what it is like to be told that you have a 50-85% chance of getting breast cancer by age 80. These women have been inspirational, brave, educational, supportive......the list goes on. They have helped me more than they will ever know.
My online LCIS friends have also been supportive, but still there aren't many of us who have gone down the same road as me.....living hours from the hospital, LCIS, PBM and DIEP. With LCIS, we fall in the middle, we have non-invasive breast cancer which may never spread. We are given our options: 1. vigilant follow-up, 2. vigilant follow-up and tamoxifen and 3. PBM. We are left to choose on our own. There are no advocates for us. We do our research, connect as much as we can and hope for the best.
So, in hoping for the best, I am trying to wiggle away. I want stop thinking about this and get on with my life. I want to focus on my kids, my DH, my business, my life. I have no idea if this is normal, but this is where I am at today. I call it cold feet.
Oh, to have a crystal ball. Wouldn't it be so much easier to make these decisions if we could only foresee the future? Putting my surgery off by 6 months wouldn't change the risk. With LCIS my risk increases 1% each year. The risk is that if I put it off I may never get back to rescheduling it.
I do find it interesting that I am questioning my decision to move forward. When I make big decisions I typically do this type of waffling. I like to know that there is an 'out'. BUT with a decision this big, I was surprised that I am rethinking my decision all over again.
One thing I did do was contact my PS's nurse who is going to connect me with a past patient who had all the same things going on that I do: LCIS, PBM, LCIS and lives a distance for the medical center. I am looking forward to speaking with her. This may be the piece of information I need to feel confident in my decision.
People with LCIS are in a unique situation. We don't have invasive cancer. What we have is a marker for increased risk of breast cancer in either breast with that risk increasing by 1% each year. 20% of in situ cancers are LCIS, so we are not in the majority. I know of lots of people with LCIS (from breastcancer.org), but I don't know anyone else in real life. So a big missing piece for me is talking to a real live person who has had the very same diagnosis as me.
At this point the best matches for me are my BRCA+ friends. They have been so supportive of me and my upcoming surgery. It doesn't matter to them that I am not BRCA+. They know what it is like to be told that you have a 50-85% chance of getting breast cancer by age 80. These women have been inspirational, brave, educational, supportive......the list goes on. They have helped me more than they will ever know.
My online LCIS friends have also been supportive, but still there aren't many of us who have gone down the same road as me.....living hours from the hospital, LCIS, PBM and DIEP. With LCIS, we fall in the middle, we have non-invasive breast cancer which may never spread. We are given our options: 1. vigilant follow-up, 2. vigilant follow-up and tamoxifen and 3. PBM. We are left to choose on our own. There are no advocates for us. We do our research, connect as much as we can and hope for the best.
So, in hoping for the best, I am trying to wiggle away. I want stop thinking about this and get on with my life. I want to focus on my kids, my DH, my business, my life. I have no idea if this is normal, but this is where I am at today. I call it cold feet.
Wednesday, February 24, 2010
A New Day!
Today I woke up to find several very nice comments on my blog. Thank you!! I am understanding what it means to have support from people who have traveled this road before me. You really can understand the emotional rollercoaster I am riding right now. Most of the time I can block out my surgery, but not for long. A friend described it as "all consuming". She was right.
For me "all consuming" is the planning that goes along with being away from my children, my home, my work (I am self-employed); getting my paperwork all in order from insurance approvals, to medical treatments forms signed for my kids, to updating my will and power-of-attorney, to creating lists for my wonderful sister-in-law who will come and stay with my kids; to planning ahead for meals and setting the house up for recovery.
This last item is tough. We built our home seven years ago with an open concept. It's great, but if you aren't feeling well then there isn't any place to go where it is quiet and dark without going to your bedroom. I was sick a few weeks ago and felt awful. I decided to rest in a recliner in our living room. Oh, the noise. There really isn't any way to shut it out. So I did go upstairs to my bedroom to rest, but then I felt like I was locked away and very isolated from everyone. I will have to ask Teri about this. Since she is living the recovery as I type this. I can't tell you just how helpful it is to have someone who is two months ahead of you on this road to significantly reducing our breast cancer risk.
I am one day closer and feel much more connected and even more secure in my decision today. Teri's friends and aunt who commented on my post yesterday really gave me a boost. Thanks again!!
For me "all consuming" is the planning that goes along with being away from my children, my home, my work (I am self-employed); getting my paperwork all in order from insurance approvals, to medical treatments forms signed for my kids, to updating my will and power-of-attorney, to creating lists for my wonderful sister-in-law who will come and stay with my kids; to planning ahead for meals and setting the house up for recovery.
This last item is tough. We built our home seven years ago with an open concept. It's great, but if you aren't feeling well then there isn't any place to go where it is quiet and dark without going to your bedroom. I was sick a few weeks ago and felt awful. I decided to rest in a recliner in our living room. Oh, the noise. There really isn't any way to shut it out. So I did go upstairs to my bedroom to rest, but then I felt like I was locked away and very isolated from everyone. I will have to ask Teri about this. Since she is living the recovery as I type this. I can't tell you just how helpful it is to have someone who is two months ahead of you on this road to significantly reducing our breast cancer risk.
I am one day closer and feel much more connected and even more secure in my decision today. Teri's friends and aunt who commented on my post yesterday really gave me a boost. Thanks again!!
Tuesday, February 23, 2010
Eye-Opening Blog!
Today I had an eye-opening experience. I follow Teri's Blog. I went back through some of Teri's posts from right before her PBM + DIEP, through her surgery and now almost a month later. "Brave" is the word that comes to mind as I read her posts. Brave in moving forward with surgery even though she didn't have invasive breast cancer (BRCA+) and brave for sharing her feelings and thoughts as she moved through her decision making, surgery and now, recovery.
Although I am heading down the same PBM + DIEP road, I feel anything but brave. I am scared. I really don't like pain and really worry about never being pain-free again. I worry that I don't know enough about what to expect. I guess I should make a list of questions for my pre-admission testing date (March 8-9). I worry that I will doubt my decision. I worry about post surgery depression. I worry about my husband being the only one with me in Boston. I worry about my kids back at home, with a very favorite aunt. I worry that I will sacrifice my pain-free life for a breast cancer-free life riddled with pain. I am not BRCA+ (at least I don't think so), but have LCIS, ALH, ADH, family history, and all the risk factors which gives me a greater than 1 in 2 chance of getting breast cancer.
One of the things that struck me on Teri's blog was a video she made right before her surgery. Here is this young mother who appears as healthy as you and me heading into major surgery. It's incredulous. One day healthy and happy (and high risk) and the next day cut open from hip-to-hip with breast tissue removed, drains in and in pain (with a 2% risk). I don't have any friends who have chosen this path. I have lots of friends who have had breast cancer, surgery, chemo, radiation, then reconstruction. They all agree that I am doing the right thing. BUT, I don't have to. I can let life choose my direction instead of being pro-active and choosing this very difficult path. If only I had a crystal ball.
My thanks to Teri for her courage to move forward, her courage to share and her courage to educate. Because of Teri I have a much better idea of what to expect before, during and after surgery. I haven't heard any of this from my doctors, yet, but will on March 8-9. But now I feel much better prepared and will know what to ask and what to expect. I do think keeping a steady dose of pain meds in my system will be at the top of my list!!
Although I am heading down the same PBM + DIEP road, I feel anything but brave. I am scared. I really don't like pain and really worry about never being pain-free again. I worry that I don't know enough about what to expect. I guess I should make a list of questions for my pre-admission testing date (March 8-9). I worry that I will doubt my decision. I worry about post surgery depression. I worry about my husband being the only one with me in Boston. I worry about my kids back at home, with a very favorite aunt. I worry that I will sacrifice my pain-free life for a breast cancer-free life riddled with pain. I am not BRCA+ (at least I don't think so), but have LCIS, ALH, ADH, family history, and all the risk factors which gives me a greater than 1 in 2 chance of getting breast cancer.
One of the things that struck me on Teri's blog was a video she made right before her surgery. Here is this young mother who appears as healthy as you and me heading into major surgery. It's incredulous. One day healthy and happy (and high risk) and the next day cut open from hip-to-hip with breast tissue removed, drains in and in pain (with a 2% risk). I don't have any friends who have chosen this path. I have lots of friends who have had breast cancer, surgery, chemo, radiation, then reconstruction. They all agree that I am doing the right thing. BUT, I don't have to. I can let life choose my direction instead of being pro-active and choosing this very difficult path. If only I had a crystal ball.
My thanks to Teri for her courage to move forward, her courage to share and her courage to educate. Because of Teri I have a much better idea of what to expect before, during and after surgery. I haven't heard any of this from my doctors, yet, but will on March 8-9. But now I feel much better prepared and will know what to ask and what to expect. I do think keeping a steady dose of pain meds in my system will be at the top of my list!!
Thursday, February 11, 2010
Ready, Set, Go....
You will recall that my big date was set for March 15th. Well, now it is March 29th. The breast surgeon has something she has to do that day, so I got rescheduled. Very distressing at first, but actually worked out very well for us. First, I get to keep my breasts for two more weeks. Second, I have more time to get organized. Third, I know this date won't get changed.
You may have been able to read between the lines that I haven't been totally onboard with this whole decision. However when the date is taken away and you get an opportunity to rethink the surgery altogether, you really come to terms with what you want and what your don't want. I never once said to myself that I didn't want the surgery, I was upset and looking at other alternatives to having this done in Boston. So, after sleeping on it, I realized that the quickest way to get this behind me is to stick with Boston. I have picked the best doctors I can find in Boston for this procedure.
So, my mind is made up. I am ready. I am now on the other side of this decision. Now I am ordering things called "marsupials" - a belt with pouches for the drains. I am ordering a hospital bed for the time when I can't sleep flat. I am getting clothes together that open in the front. I have wisps for when I can't brush my teeth. My friends are thinking about how to help. I don't have any doubts. Ready, set, go.....
You may have been able to read between the lines that I haven't been totally onboard with this whole decision. However when the date is taken away and you get an opportunity to rethink the surgery altogether, you really come to terms with what you want and what your don't want. I never once said to myself that I didn't want the surgery, I was upset and looking at other alternatives to having this done in Boston. So, after sleeping on it, I realized that the quickest way to get this behind me is to stick with Boston. I have picked the best doctors I can find in Boston for this procedure.
So, my mind is made up. I am ready. I am now on the other side of this decision. Now I am ordering things called "marsupials" - a belt with pouches for the drains. I am ordering a hospital bed for the time when I can't sleep flat. I am getting clothes together that open in the front. I have wisps for when I can't brush my teeth. My friends are thinking about how to help. I don't have any doubts. Ready, set, go.....
Monday, January 25, 2010
Countdown to March 15th (NOT)
I have had to leave Facebook temporarily since my wonderful niece (she really is wonderful) is doing a countdown to March 15th for a very cool concert she is going to. It happens to be the day I will have my breasts removed and endure 12+ hours of surgery to create new breasts. I want time to stand still. I get a knot in my stomach each time I see her countdown, so I have been avoiding facebook.
Although, I have created a FB account under the name Beth Israel which will be primarily updates as we move closer to the 15th and as we move beyond the big day and the big surgery.
Although, I have created a FB account under the name Beth Israel which will be primarily updates as we move closer to the 15th and as we move beyond the big day and the big surgery.
Tuesday, January 19, 2010
It's all about the FEAR.....
Here is another post from a previvor's blog.....this says it all, for now....
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From this blog: http://goodbyetoboobs.blogspot.com/
3) The worst part of surgery is the fear and anxiety I felt leading up to it.
It's hard for me now, a month removed, to quantify exactly how scared I was before my surgery. But it goes without saying I have never been more anxious or more fearful of anything in my life. And now: nothing. No fear. No anxiety. When I said before mastectomies only remove breasts, I was only half truthful: they also remove the anxiety. Nothing about recovery -- not the soreness, not the painkiller-induced fog, not the emotional vulnerability -- is as difficult as living life under the crushing weight of fear and anxiety. I know it sounds simplistic, and this is a statement that can only be said with the benefit of hindsight, but here it is: surgery isn't so bad. The shit I put myself through before -- now that was torture.
_____________________________________________________________________
From this blog: http://goodbyetoboobs.blogspot.com/
3) The worst part of surgery is the fear and anxiety I felt leading up to it.
It's hard for me now, a month removed, to quantify exactly how scared I was before my surgery. But it goes without saying I have never been more anxious or more fearful of anything in my life. And now: nothing. No fear. No anxiety. When I said before mastectomies only remove breasts, I was only half truthful: they also remove the anxiety. Nothing about recovery -- not the soreness, not the painkiller-induced fog, not the emotional vulnerability -- is as difficult as living life under the crushing weight of fear and anxiety. I know it sounds simplistic, and this is a statement that can only be said with the benefit of hindsight, but here it is: surgery isn't so bad. The shit I put myself through before -- now that was torture.
I could have posted this myself.....
This is from a blog I came across recently.......my feelings are the same....the procedure the same.....
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DIEP
November 1, 2009 by Teri Smieja
I’ve been talking awhile now about my fast approaching PBM – the DIEP that I’m having on January 12, 2010. For some reason saying ‘in January’ still made it seem far away. When I wrote yesterday’s blog entry instead of saying ‘in January’ I said ‘in a little over two’ months. Wording it that way made me realize how close it is – two months! I have no doubt that I’m going to be thinking and therefore blogging about this a lot more frequently in the next two months. I’ve already spent a lot of time explaining WHY I’m doing what I’m doing, so why not explain WHAT it is that I’m doing….
These days there are many different reconstruction options available to women who have mastectomies. When I first started learning about BRCA mutations, preventative surgeries and reconstruction, I was overwhelmed with all of the choices available. After a lot of research and thought I finally decided that the DIEP flap was the best option for me.
PBM = Prophylactic Bilateral Mastectomy – Prophylactic refers to the preventative aspect of the surgery. When a woman has her breasts removed BEFORE they have cancer then it is a PBM. PBM is NOT a specific reconstruction type; it’s the surgical removal of healthy breasts – bilateral means both breasts, also known as a double mastectomy.
DIEP = Deep Inferior Epigastric Perforator Flap. This is one of many reconstruction options available. It’s a highly technical and difficult surgery to perform and not just any doctor can do it. The DIEP can be used as immediate or delayed reconstruction. In my case I’ll be having a PBM with an immediate DIEP reconstruction. I will never have the experience of waking up and looking down to see no breasts on my chest (if you knew how much this image haunted me when I first learned of my BRCA mutated status, you’d know what a relief this is to me). When I wake up from surgery it will be with reconstructed breasts – though they won’t be picture perfect yet and will still need some work and revision surgery about 12 weeks later, which means even more time needed for recovery.
The DIEP uses fatty tissue and skin from the abdomen to reconstruct. The stomach area is cut from one end to the other leaving one hell of a scar – about twice the size of a c-section scar. Fat is scooped out as well as a subcutaneous layer of skin. Subcutaneous means ‘just under the skin.’ Small blood vessels are removed with this skin and then attached to blood vessels in the breast area (this is why the term ‘flap’ is used) after the mastectomy – that’s the part that makes it microsurgery – it’s all so small that the surgeons need to use a microscope to see what they’re doing. Tricky stuff! The end result of my stomach area will be much the same as if I had a tummy tuck. No stomach muscles are cut with the DIEP. That means that the muscle integrity in the stomach isn’t compromised. It’s also less healing to worry about. That’s a good thing.
Nipple reconstruction is optional and I’m still leaning toward not having this done at all. I’ll save that subject for another entry.
The mastectomy requires an incision from the lower portion of the breast (either directly under the nipple or to the outer sides of it) – and as much of the breast and fatty tissue that can be removed, gets removed.
This surgery will require 12-14 hours (if all goes well) of being under anesthesia and involves a lot of slicing, scraping, precise removal of tissue and skin, attaching and stitching – it’s going to be quite a recovery process! Drains are placed in each new breast and in each side of the stomach. These have to stay in for 2-5 days, and from what I’ve heard, they are more of a nuisance than anything.
There are a few advantages of having a flap procedure for reconstruction versus expanders/implants. While the recovery is harder at the beginning (more of the body needs to heal), overall it’s over sooner than those who go the implant route – which takes many months of weekly or bi-weekly fills, stretching the skin out enough for the implants and then a final exchange surgery.
With the DIEP my breasts will grow or shrink with me as I lose or gain weight. Another advantage to having a flap reconstruction over implants is that I won’t have to worry about capsular contracture – my body won’t reject its own fat.
Of the multitude of reconstruction options out there, each one has advantages and disadvantages and who gets what kind should be based on the individual. Different women have different needs/wants.
_____________________________________________________________________________
DIEP
November 1, 2009 by Teri Smieja
I’ve been talking awhile now about my fast approaching PBM – the DIEP that I’m having on January 12, 2010. For some reason saying ‘in January’ still made it seem far away. When I wrote yesterday’s blog entry instead of saying ‘in January’ I said ‘in a little over two’ months. Wording it that way made me realize how close it is – two months! I have no doubt that I’m going to be thinking and therefore blogging about this a lot more frequently in the next two months. I’ve already spent a lot of time explaining WHY I’m doing what I’m doing, so why not explain WHAT it is that I’m doing….
These days there are many different reconstruction options available to women who have mastectomies. When I first started learning about BRCA mutations, preventative surgeries and reconstruction, I was overwhelmed with all of the choices available. After a lot of research and thought I finally decided that the DIEP flap was the best option for me.
PBM = Prophylactic Bilateral Mastectomy – Prophylactic refers to the preventative aspect of the surgery. When a woman has her breasts removed BEFORE they have cancer then it is a PBM. PBM is NOT a specific reconstruction type; it’s the surgical removal of healthy breasts – bilateral means both breasts, also known as a double mastectomy.
DIEP = Deep Inferior Epigastric Perforator Flap. This is one of many reconstruction options available. It’s a highly technical and difficult surgery to perform and not just any doctor can do it. The DIEP can be used as immediate or delayed reconstruction. In my case I’ll be having a PBM with an immediate DIEP reconstruction. I will never have the experience of waking up and looking down to see no breasts on my chest (if you knew how much this image haunted me when I first learned of my BRCA mutated status, you’d know what a relief this is to me). When I wake up from surgery it will be with reconstructed breasts – though they won’t be picture perfect yet and will still need some work and revision surgery about 12 weeks later, which means even more time needed for recovery.
The DIEP uses fatty tissue and skin from the abdomen to reconstruct. The stomach area is cut from one end to the other leaving one hell of a scar – about twice the size of a c-section scar. Fat is scooped out as well as a subcutaneous layer of skin. Subcutaneous means ‘just under the skin.’ Small blood vessels are removed with this skin and then attached to blood vessels in the breast area (this is why the term ‘flap’ is used) after the mastectomy – that’s the part that makes it microsurgery – it’s all so small that the surgeons need to use a microscope to see what they’re doing. Tricky stuff! The end result of my stomach area will be much the same as if I had a tummy tuck. No stomach muscles are cut with the DIEP. That means that the muscle integrity in the stomach isn’t compromised. It’s also less healing to worry about. That’s a good thing.
Nipple reconstruction is optional and I’m still leaning toward not having this done at all. I’ll save that subject for another entry.
The mastectomy requires an incision from the lower portion of the breast (either directly under the nipple or to the outer sides of it) – and as much of the breast and fatty tissue that can be removed, gets removed.
This surgery will require 12-14 hours (if all goes well) of being under anesthesia and involves a lot of slicing, scraping, precise removal of tissue and skin, attaching and stitching – it’s going to be quite a recovery process! Drains are placed in each new breast and in each side of the stomach. These have to stay in for 2-5 days, and from what I’ve heard, they are more of a nuisance than anything.
There are a few advantages of having a flap procedure for reconstruction versus expanders/implants. While the recovery is harder at the beginning (more of the body needs to heal), overall it’s over sooner than those who go the implant route – which takes many months of weekly or bi-weekly fills, stretching the skin out enough for the implants and then a final exchange surgery.
With the DIEP my breasts will grow or shrink with me as I lose or gain weight. Another advantage to having a flap reconstruction over implants is that I won’t have to worry about capsular contracture – my body won’t reject its own fat.
Of the multitude of reconstruction options out there, each one has advantages and disadvantages and who gets what kind should be based on the individual. Different women have different needs/wants.
More Fodder for the Doubting Mind.....
Abstract
Bilateral prophylactic mastectomy without reconstruction is not accepted by the majority of patients. Successful reconstruction is therefore a mandatory condition for prophylactic mastectomy. Of the many options for autologous breast reconstruction, the deep inferior epigastric perforator (DIEP) flap best meets requirements for bilateral reconstruction in selected patients. The goal of this study is to verify the feasibility of the procedure in our conditions and to find out how it is accepted by patients.
We present 55 consecutive patients who were scheduled for bilateral DIEP flap reconstruction during a 4-year period. We reviewed medical charts, performed clinical assessments and processed anonymous questionnaires. There were 77 immediate and 33 delayed breast reconstructions.
There was 100% flap survival and no microanastomoses revisions. In 11 patients (10%) the surgeon preferred to convert the DIEP into a mini transverse rectus abdominis muscle (miniTRAM) flap in order to provide adequate blood supply. Complications: revision for haematoma under the flap in four patients (7.2%), excessive blood loss in four patients (7.2%) and partial mastectomy skin flap necrosis in 10 immediate breast reconstructions (12.9%). Patients' evaluation of the aesthetic result was good or excellent in 96.2% of cases. In 33.9% of patients the postoperative quality of life was considered unchanged and 50.9% of them it even improved.
The DIEP flap is recommended for bilateral breast reconstruction. Occasional conversion into a miniTRAM flap can increase the total flap survival rate. Bilateral prophylactic mastectomy and DIEP flap reconstruction are very well accepted by patients.
Bilateral prophylactic mastectomy without reconstruction is not accepted by the majority of patients. Successful reconstruction is therefore a mandatory condition for prophylactic mastectomy. Of the many options for autologous breast reconstruction, the deep inferior epigastric perforator (DIEP) flap best meets requirements for bilateral reconstruction in selected patients. The goal of this study is to verify the feasibility of the procedure in our conditions and to find out how it is accepted by patients.
We present 55 consecutive patients who were scheduled for bilateral DIEP flap reconstruction during a 4-year period. We reviewed medical charts, performed clinical assessments and processed anonymous questionnaires. There were 77 immediate and 33 delayed breast reconstructions.
There was 100% flap survival and no microanastomoses revisions. In 11 patients (10%) the surgeon preferred to convert the DIEP into a mini transverse rectus abdominis muscle (miniTRAM) flap in order to provide adequate blood supply. Complications: revision for haematoma under the flap in four patients (7.2%), excessive blood loss in four patients (7.2%) and partial mastectomy skin flap necrosis in 10 immediate breast reconstructions (12.9%). Patients' evaluation of the aesthetic result was good or excellent in 96.2% of cases. In 33.9% of patients the postoperative quality of life was considered unchanged and 50.9% of them it even improved.
The DIEP flap is recommended for bilateral breast reconstruction. Occasional conversion into a miniTRAM flap can increase the total flap survival rate. Bilateral prophylactic mastectomy and DIEP flap reconstruction are very well accepted by patients.
I need to hear that I am not alone (and not crazy)...
Oh, the date for my surgery is coming fast and furiously closer. I am scared. I admit this only to my DH, who is very supportive. BUT I need to hear about or from people who have had non-invasive bc AND who took the courageous step toward bilateral mastectomies. I was googling Rene Syler and found this. I first learned of Rene Syler, who had a PBM two years ago, when I was in a plastic surgeon's office in Boston. There was a magazine with an article of her. I hadn't thought of her or that article until now. Now is when I need the reinforcement and support to keep me focused on moving ahead. It really isn't about my breasts, it's about staying alive and healthy for my kids. So, anyway, this is an excerpt from an online article on Rene Syler.
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More From This ArticleProphylactic Mastectomy the Facts
While no national statistics exist, in the last five years more women at high risk for breast cancer—those with a strong family history, a genetic predisposition or with biopsies that indicate certain abnormal cell growth—are opting for prophylactic mastectomies, reducing their likelihood of developing breast cancer by up to 98 percent. "Women are choosing to be proactive in risk reduction," says Dr. Cheryl Perkins, clinical adviser for Susan G Komen for the Cure. "[The procedure] has become more readily available, more sophisticated and refined."
Most women are pleased with the results. "We find that almost always, quality of life improves," says Syler's own doctor Virgilio Sacchini, attending surgeon at Memorial Sloan-Kettering Cancer Center in New York City.
________________________________________________________________________________
More From This ArticleProphylactic Mastectomy the Facts
While no national statistics exist, in the last five years more women at high risk for breast cancer—those with a strong family history, a genetic predisposition or with biopsies that indicate certain abnormal cell growth—are opting for prophylactic mastectomies, reducing their likelihood of developing breast cancer by up to 98 percent. "Women are choosing to be proactive in risk reduction," says Dr. Cheryl Perkins, clinical adviser for Susan G Komen for the Cure. "[The procedure] has become more readily available, more sophisticated and refined."
Most women are pleased with the results. "We find that almost always, quality of life improves," says Syler's own doctor Virgilio Sacchini, attending surgeon at Memorial Sloan-Kettering Cancer Center in New York City.
Sunday, January 17, 2010
Less than 2 months away....
My surgery in now less than two months away. As a way of blocking this fact out of my mind, I have been cleaning and organizing!! The attic is done, the basement is done (well almost done), the garage has been cleaned, the girls' bedrooms have been rearranged and one room turned into a playroom, Jie Jie's paperwork has been put in plastic sheets and saved in a pretty pink binder, DV tapes have been transferred to DVDs and that's just the beginning.
Next up is FINALLY, Mei Mei's lifebook and video. In the meantime I have been working on revamping my website - for maybe the 10th time. Each year I learn a bit more about website design and want to put all that knowledge to work.
I know that all these projects are diversions from the fact that in less than two months I will CHOOSE to have both of my breasts removed and replaced with the belly fat that I am trying very hard to grow. It's probably silly, but I don't want to get down to Boston and have the plastic surgeon tell me that there just isn't enough 'material' to harvest. Sidetrack: the first time I heard the word "harvest" in relation to my body was the very first plastic surgeon I met with. He talked about a 22-hour surgery and carving my back up to make new breasts, only to have to use implants after all that. I ran from his office just about as fast as my legs would carry me.
So now, I am looking at a 12-hour surgery, but using my belly. They say the bonus is that I get a tummy tuck in the deal. I guess that is good, it's just that I am a believer that I could create a flatter tummy if I tried - all by myself and without the help of a scapel. Anyway, I will get a tummy tuck and a new bellybutton. I like the old one, but I get a new one. I don't want to ask why or how. Everytime I see a medical show on tv and they start to cut someone open, I cringe. I know that will be me.
Another sidetrack: during my first biopys my breast surgeon was talking me through it. She offered to show me the razor-like device she was using to poke my skin. I did glance at it, but then told her very clearly that I really didn't need to see anything more. My eyes stayed glued to a poster on the ceiling. It was a poster of a head, maybe Einstein, maybe Freud, maybe it was a generic head with comments of when things were invented and how long it took and something about doubters. I am surprised that I remember that much, but then again 45 minutes is a long time to be staring at something in an attempt to avoid something very unappealing - like my body being cut open.
For the end of a long day, long weekend, I seem to have come to life. Well, 24 is about to start so I will join the millions of others and watch the season premier. Although I much prefer the drama of Desperate Housewives.
Next up is FINALLY, Mei Mei's lifebook and video. In the meantime I have been working on revamping my website - for maybe the 10th time. Each year I learn a bit more about website design and want to put all that knowledge to work.
I know that all these projects are diversions from the fact that in less than two months I will CHOOSE to have both of my breasts removed and replaced with the belly fat that I am trying very hard to grow. It's probably silly, but I don't want to get down to Boston and have the plastic surgeon tell me that there just isn't enough 'material' to harvest. Sidetrack: the first time I heard the word "harvest" in relation to my body was the very first plastic surgeon I met with. He talked about a 22-hour surgery and carving my back up to make new breasts, only to have to use implants after all that. I ran from his office just about as fast as my legs would carry me.
So now, I am looking at a 12-hour surgery, but using my belly. They say the bonus is that I get a tummy tuck in the deal. I guess that is good, it's just that I am a believer that I could create a flatter tummy if I tried - all by myself and without the help of a scapel. Anyway, I will get a tummy tuck and a new bellybutton. I like the old one, but I get a new one. I don't want to ask why or how. Everytime I see a medical show on tv and they start to cut someone open, I cringe. I know that will be me.
Another sidetrack: during my first biopys my breast surgeon was talking me through it. She offered to show me the razor-like device she was using to poke my skin. I did glance at it, but then told her very clearly that I really didn't need to see anything more. My eyes stayed glued to a poster on the ceiling. It was a poster of a head, maybe Einstein, maybe Freud, maybe it was a generic head with comments of when things were invented and how long it took and something about doubters. I am surprised that I remember that much, but then again 45 minutes is a long time to be staring at something in an attempt to avoid something very unappealing - like my body being cut open.
For the end of a long day, long weekend, I seem to have come to life. Well, 24 is about to start so I will join the millions of others and watch the season premier. Although I much prefer the drama of Desperate Housewives.
Wednesday, January 6, 2010
Reflections
Now for some reflections. I want to talk about my beautiful and loving daughters. Jie Jie and Mei Mei are truly the light of my life. When you are facing a very difficult decision and a very long (12 hour) surgery you start to think about all the things that are important to you. My DH is my best friend and the one person in this world that I undeniably rely on to hold me up. He has been supportive throughout this past year in a way I never would have expected. Accompanying me to each and every key appointment. Never complaining. Always deferring to 'my' decision. But in his eyes I could see that he doesn't want to see me battle breast cancer with chemo and radiation - if I can avoid it. He has always insisted on being there for me before, during and after my surgery. I could never have asked for a better partner in life.
Saturday, January 2, 2010
Happy New Year!
Two and a half months and counting. I used to be able to say that my upcoming surgery was 'next' year, but that time has come. Now I am still counting in months, next it will be weeks, then days, then hours, then minutes. I am scared. On New Year's Eve I created my will. What if something goes wrong? I know I can't or shouldn't think that way. But for those of you who know me know that I plan for the worst. Maybe that's bad karma, but I would rather be prepared.
When working on a will there are lots of choices to make. It's not all about money! There were alot of questions about health directives. So, on New Year's Eve I kept asking my DH if he would be willing to make all sorts of gut-wrenching decisions for me. He's a good sport and agreed.
One New Year's Day I started cleansing the house, starting in the attic. By March 15th I want to have my house all organized and orderly. I know in my heart, it's a 'just in case' scenario. I also know that women everyday have this surgery and not only survive it, but (later) say they wouldn't do it any other way.
I am still keeping my decision and my plans close to the chest, so to speak. So far, two of my sisters-in-law know. One sister-in-law is planning to come to my house and stay with the girls. There is no way to thank her for her kindness and generosity if I lived to be 100. I have also told a few of my closest friends. Not many since I don't want that to affect our relationship. I am telling only the people whom I believe will be genuinely helpful to me, DH or my daughters. I am not interested in telling people so that they will be 'in the know'.
When working on a will there are lots of choices to make. It's not all about money! There were alot of questions about health directives. So, on New Year's Eve I kept asking my DH if he would be willing to make all sorts of gut-wrenching decisions for me. He's a good sport and agreed.
One New Year's Day I started cleansing the house, starting in the attic. By March 15th I want to have my house all organized and orderly. I know in my heart, it's a 'just in case' scenario. I also know that women everyday have this surgery and not only survive it, but (later) say they wouldn't do it any other way.
I am still keeping my decision and my plans close to the chest, so to speak. So far, two of my sisters-in-law know. One sister-in-law is planning to come to my house and stay with the girls. There is no way to thank her for her kindness and generosity if I lived to be 100. I have also told a few of my closest friends. Not many since I don't want that to affect our relationship. I am telling only the people whom I believe will be genuinely helpful to me, DH or my daughters. I am not interested in telling people so that they will be 'in the know'.
Tuesday, December 8, 2009
March 15, 2010
March 15, 2010! It's overwhelming. The emotions connected to hearing this date are across the board. Relief. Fear. More Relief. More Fear. And believe it or not - pride. I am so damn proud of myself for making a decision. It would have been so much easier to wait and wait and worry and wait.
I will keep this to myself all day. I need to mull it over. I need to see what my 'gut' reaction is. I need to cry a little bit. I need to accept who I am and why I am making this decison.
One thing that does come to mind is that there is absolutely no advocacy from any professional connected to this decision. It's as if each person does his or her own thing. There is no breast center advocate who could help with discussing arrangements for family while I am in the hospital, or helping me to decide if I should come home after the procedure only to drive back to Boston a few days later or someone to just listen as I wrap my mind around my decision. I am not surprised, as this has been my experience from Day One.
I will keep this to myself all day. I need to mull it over. I need to see what my 'gut' reaction is. I need to cry a little bit. I need to accept who I am and why I am making this decison.
One thing that does come to mind is that there is absolutely no advocacy from any professional connected to this decision. It's as if each person does his or her own thing. There is no breast center advocate who could help with discussing arrangements for family while I am in the hospital, or helping me to decide if I should come home after the procedure only to drive back to Boston a few days later or someone to just listen as I wrap my mind around my decision. I am not surprised, as this has been my experience from Day One.
Monday, December 7, 2009
Decision MADE!
Today I made the decision to move forward with a prophylactic bilateral mastectomy. It was a year in the making and by far the toughest decision I have ever had to make. Although the final decision was mine to make, I want to thank my friends and family for being there every step of the way. You all rode the same rollercoaster with me and I will be eternally grateful to you all.
If you have followed my blog (sporadic as it is), you will know just how I have struggled with this decision. In the end, it is just the right thing to do. I appreciate that I am one of the lucky ones who has a chance to significantly reduce her risk of breast cancer before it becomes invasive breast cancer. Or at least I hope it hasn't reached that point.
I will now call the DIEP surgeon and make this decision official.
If you have followed my blog (sporadic as it is), you will know just how I have struggled with this decision. In the end, it is just the right thing to do. I appreciate that I am one of the lucky ones who has a chance to significantly reduce her risk of breast cancer before it becomes invasive breast cancer. Or at least I hope it hasn't reached that point.
I will now call the DIEP surgeon and make this decision official.
Friday, November 20, 2009
Still Deciding....
It has been a month or so since I last posted. Nothing new has happened. Still waiting for appt. with breast surgeon in Boston on Monday the 30th. I know that I will make the decision on Monday as I am meeting with the breast surgeon. She has requested all of my information/tissue samples ahead of time and will have a very good handle on all of my risk factors. I am feeling a bit scared, but at the same time I am just so ready to have this all behind me.
In the last week I have been studying my 2010 calendar very closely trying to target the 'right' time for surgery and recovery. THERE IS NO GOOD TIME! If I pick a winter date will I run into a higher risk of catching something like the flu while in the hospital and will we have to deal with icy roads (we live 4+ hours from Boston)? If I pick a later date will it run into summer, the season we live for all year long?
I just posted on breastcancer.org, so am hoping for some words of wisdom from my online friends.
In the last week I have been studying my 2010 calendar very closely trying to target the 'right' time for surgery and recovery. THERE IS NO GOOD TIME! If I pick a winter date will I run into a higher risk of catching something like the flu while in the hospital and will we have to deal with icy roads (we live 4+ hours from Boston)? If I pick a later date will it run into summer, the season we live for all year long?
I just posted on breastcancer.org, so am hoping for some words of wisdom from my online friends.
Thursday, October 15, 2009
DIEP - Moving Forward
Last week I met with another plastic surgeon in Boston. I liked him. So the problem was that I like both plastic surgeons I've met in Boston. That's a good problem to have. It boiled down to being in a recovery room with an oxygenation (sp?) machine and one nurse versus ICU for the 12-24 hours following surgery.
Now I need to have a consult with the breast surgeon they recommended. The process for that is that I have to call my PCP and request a referral, then I will make that appointment. Early on I got burned when I didn't know about out-of-network referrals and waiting for approval before the consult. Anthem did reimburse me, but it wasn't until much time/effort/apology on my part to educate them as to my explanations.
As this is becoming more real for me, I recognize the fact that I don't need to do anything. Cold Feet. Just when I think I can postpone the procedure indefinitely, I get reminders.
Just this morning I got an email from a lady who made me realize that I am LUCKY to have the option of doing something about my non-invasive breast cancer before it becomes invasive. I am truly appreciative of people who are willing to take the time to reach out. I can't tell you just how much this means to me and how much this influences me.
Now I need to have a consult with the breast surgeon they recommended. The process for that is that I have to call my PCP and request a referral, then I will make that appointment. Early on I got burned when I didn't know about out-of-network referrals and waiting for approval before the consult. Anthem did reimburse me, but it wasn't until much time/effort/apology on my part to educate them as to my explanations.
As this is becoming more real for me, I recognize the fact that I don't need to do anything. Cold Feet. Just when I think I can postpone the procedure indefinitely, I get reminders.
Just this morning I got an email from a lady who made me realize that I am LUCKY to have the option of doing something about my non-invasive breast cancer before it becomes invasive. I am truly appreciative of people who are willing to take the time to reach out. I can't tell you just how much this means to me and how much this influences me.
Monday, October 5, 2009
Fear, Worry, Bargaining......
I am actually getting a bit scared. My search for a plastic surgeon is nearing the end, which means that my impending surgery will be scheduled and I will lose my breasts. All this is by choice - sort of. The two-edged sword of LCIS leads me down two roads:
1. Do nothing drastic
2. Do something drastic
If I do nothing drastic then I it may be a matter of time that I get invasive breast cancer and my path will lead to mastectomy, radiation and/or chemo along with the lingering effects of that.
If I do something then I will be heading to surgery sooner rather than later, but I will eliminate the need for radiation and chemo. This makes sense. BUT I am scared. All my life I have been healthy. Other than a couple or car accidents in college and a kidney stone that landed me in the ER, I have been in pretty good shape until I started on the biopsy rollercoaster last September.
There is nothing quite like waiting for the results of a biopsy and having those results take weeks to receive. You get to do alot of thinking during that time. Your options become pretty clear as you wait. You wait. You wonder. You worry. You bargain with God. You pray. You hold your children closer. You connect with those closest to you. You pray. You worry.
As soon as the results come back, life goes back to the new normal. I don't have invasive cancer. You begin to almost forget about it. You move forward. You slip back into denial.
But the ongoing search for the right procedure and the right surgical team continues to keep my feet to the fire and moving toward my goal of reducing my breast cancer risk.
1. Do nothing drastic
2. Do something drastic
If I do nothing drastic then I it may be a matter of time that I get invasive breast cancer and my path will lead to mastectomy, radiation and/or chemo along with the lingering effects of that.
If I do something then I will be heading to surgery sooner rather than later, but I will eliminate the need for radiation and chemo. This makes sense. BUT I am scared. All my life I have been healthy. Other than a couple or car accidents in college and a kidney stone that landed me in the ER, I have been in pretty good shape until I started on the biopsy rollercoaster last September.
There is nothing quite like waiting for the results of a biopsy and having those results take weeks to receive. You get to do alot of thinking during that time. Your options become pretty clear as you wait. You wait. You wonder. You worry. You bargain with God. You pray. You hold your children closer. You connect with those closest to you. You pray. You worry.
As soon as the results come back, life goes back to the new normal. I don't have invasive cancer. You begin to almost forget about it. You move forward. You slip back into denial.
But the ongoing search for the right procedure and the right surgical team continues to keep my feet to the fire and moving toward my goal of reducing my breast cancer risk.