More Surgery Tomorrow

I am having more surgery tomorrow. Of course I am pretty stressed out about it because it is causing me to go back to zero again. They are going to replace the tissue expander with an implant. They are also going to take some fat out of my hip and add it to the right breast to give it a more breast like shape. He told me it wouldn't be enough fat removal to make any noticeable difference. I advised Dr. Keller that I was ok with him taking out more and wasting it was fine with me. He laughed about that but I don't think he is going to do it. Bummer.

There is a big dent in the top of the right breast. That is because they used fat from my abdomen. That fat has a breast like feel but it is not shaped like a breast. It is not supposed to be. They have to do revisions to make it more normal. They would have had to do that and it is not due to error.

The left side is an expander because of the errors. The expander has to come out because it is not made to be in there long term. The other problem with it is that the fill has metal components and it is blocking my MUGA (heart) scan. They have to do the heart scans on me every three months because the herceptin I get every three weeks can be cardio toxic. They want to make sure the drug is not having toxic effects. When I had the MUGA scan with the expander in they had a great deal of difficulty because the metal fill is directly above my left ventricle. The left ventricle is the area they need to see because that is what would thicken if the herceptin is causing congestive heart failure. The expander needs to come out because that scan is essential.

As much as I would like reconstructive success I would almost leave it for now because I am so sick of surgery and treatment in general. I can't because of the scans.

I am biting the bullet and putting some pictures on here. I am doing it because I have received a lot of email from other women who have done theses procedures or are about to do it and they want an honest account of what its like. It is not so great but I wish I had some real honesty when I was getting ready to go there.
This is how it looks right now. There is about a four inch difference in height. Its hard to really see it in the picture. I have looked this way since October.

This is how it looked after the second surgery when they had to remove the transplanted tissue.

I would never put these pictures on here if I actually felt like they were breasts. I don't feel like they are. The tissue feels essentially dead. There is really no sensation because they cut the nerves when they do the mastectomies. I can feel pain to the area but the skin itself really has no sensation. They say that may change but they are not sure. It is different for everyone.

I am hoping that I will have more symmetry after surgery tomorrow. I am hoping that I will not have drains. Dr. Keller said I am not likely to need drains but he couldn't guarantee it.

Julianna is going to Grandma and Pop-Pop's house until Friday morning. After that she is going to go to the O'Brien's house and on Sunday my friend Vanna is going to take her. I am really lucky that she can go be with people she loves and is comfortable with. I am truly grateful to have so many awesome people in my life. Thanks for all the good thoughts, prayers and positive vibes!!!!

Misery and Hope

Everyone, I am sorry I had no chance to update you earlier today. I have been at the hospital all day long.
Mary Ellen had a vein blockage in the transplanted flap tissue on the left side. The surgeon was unable to save the flap.
The worst part is that Mary Ellen told the resident on duty overnight again and again that she thought it was encapsulated, engorged, and without vein function. She told him this very clearly and she was in great pain, The details of this is a long story, but basically she was discounted by a man who had less medical knowledge than Mary Ellen herself. When the surgical people arrived in the morning, she was rushed to the OR stat.
Writhing in pain, frightened and angry, Mary Ellen pushed a random button on her phone and got her friend Colleen. Colleen mobilized. She called Cathy, who ran red lights en route to the hospital in her pajamas, and was able to see Mary Ellen before surgery. I rushed to the hospital, but arrived after she was in surgery.
Several hours later, Dr. Keller came out to tell me they had lost the flap. I waited to see her in recovery, but I did not want to be the person to tell her the flap was lost. The recovery room nurse told me that she already knew, but she was in a lot of pain, and while I was there I just kept advocating for more medication, letting the nurse know that Mary Ellen is particularly tough with a strong constitution and a high pain tolerance, and that she did require more pain killers. They finally relented.
Colleen came in, and as a breast surgery recovery room nurse herself, she quickly discovered that Mary Ellen's drain was full and elevated above her incision. As politely as she could muster, Colleen asked the nurse to empty and lower the drain. The nurse did this, but then kicked Colleen out of recovery.
Colleen and I waited four hours in ME's room, being told she would be brought up "any minute." When she finally came up, we were deep in discussion with the nursing manager about what had gone wrong in the night. An investigation is underway, and Mary Ellen has requested a formal copy of that report.
I told the nurse manager to be absolutely sure that neither the night nurse nor the resident would set foot in Mary Ellen's room or she was sure to bludgeon them with her IV pole and strangle them with the tubes. She agreed to have both of them reassigned.
After quite a while, we finally got some big-picture good news: Dr. Kostroff, the first breast surgeon, who did the mastectomy phase, came in to the room, still in evening clothes, having recently heard of the setback. When ME asked her "how are you?" she said she was almost as devastated as Mary Ellen. She said that although she rarely gives preliminary pathology results, she had to bring ME the early good news:
The cancer might be only stage zero, and there may be no need for chemo. Now, before you all get your hopes too high, there will be more tests done to look for any other cancer that has emerged from the ducts, but so far they have not found any except very small bits of cancer, and the sentinal nodes are negative, so there may be an excellent overall prognosis!!!!
That news helped, but Mary Ellen is still devastated at losing her chance of cosmetic success to a resident's negligence.
Vanna and I helped ME get to the bathroom and then resettled comfortably, and Vanna was going to guard her quiet space so she might sleep, and I left the hospital finally.
I will see her first thing tomorrow. I'm sorry I can't update through the day, but I have no computer access until I get home.
Pray for Mary Ellen to see the big picture, be relieved from pain, and to refrain from justifiable homicide.
More tomorrow, Kathleen

A Setback: More Surgery

Colleen called me early this morning to say Mary Ellen called her sounding awful and was being taken back to surgery. I called her immediately. Yup, she sounded awful.
She said she had a lot of pain and was being taken for more surgery, but she was unable to talk right then.
I could not get any info. No one was going to be willing to tell me anything by phone, But then I remembered the nurse Pam, who gave me updates during surgery. She had SEEN me with the heathcare proxy form in my hand, and she'd remember me. I dug out her card and called her. Thankfully, she is on duty. She said she had just received the call from Dr. Keller that Mary Ellen was coming back to surgery but so far she did not have any solid information. She took my number and promised to call me in a few minutes.
Meanwhile, Dear Ones, please pray for Mary Ellen. She is frightened and in pain at this moment. I have faith that all will be well, but she is in an extremely hard place right now.

The nurse just called! She is a kind, friendly, upbeat angel, that one.
She said Mary Ellen's left flap is a bit discolored and it hurts. There may be a blood vessel that is bleeding. Dr. Keller wants to go in there with his microscope and check. She said she can't guess how long the surgery will be but will call me the moment she knows any thing else, and I believe her. I'm on my way to the hospital now to wait outside surgery.
Love, Kathleen

Hey, What Else Can We Do Now Except Roll Down The Window and Let the Wind Blow Back Your Hair

I am out of time. Whatever did not get done is not going to get done. That's life.

I went to the plastic surgeon and he marked me for surgery. He used purple surgical marker and then went over it with a green sharpie. I have tons of lines all over my abdomen and breasts. He used the CT angiogram results in conjunction with a doppler to find all the vessels he will need and then marked them on my abdomen. It took about an hour and a half.

He answered all my questions. Will you give me something for anxiety in the morning? Answer, no. It interferes with the anesthesia. Can I take something tonight? Answer, have a glass of wine. Cool. I am going to the Springsteen concert tonight and now I can have a beer. Score.

The PA came in afterwards and discussed a lot of things with me. There will be 3 surgeons. Dr. Keller, Dr Kostroff and Dr Schwartz. There will be an anesthesiologist and an anesthesia nurse. There will be a number of PAs and a number of nurses. She said the surgery should start at 7:30 am. The earliest it will be finished is 8pm, but it is more likely that it will be 10 or 11 pm. No family or friends should wait there. They will call when Dr. Kostroff is finished and she will have the status of the sentinal node biopsy. Dr. Keller will call when he is finished. He will not come out to meet anyone even if they are there. After the surgery I will go to the recovery room and will stay there all night. Family can visit there but it will be a waste because I will be out of it. The next day I will go to a regular room and people can visit. I will have a pain pump that I will control of. I will have no food restrictions. I will have a Foley. I will have the pneumatic stockings on my legs. I will have six drains, two in each breast and two in the abdomen. It is expected that I will go home Monday.

I finished a few more errands. Went to the gym to suspend my membership, went to BJs to buy big heavy stuff I will not be able to carry for awhile (diapers, wipes, dog food). I think I am as ready to go as I will ever be.

My sister Kathleen (Kate) is going to update the blog. She will write on it as soon as she hears things.

Now, we are off to see Bruce Springsteen at Giants Stadium. It should be awesome.

Thanks everyone!!!!!!!!!!!!!!!!

Dr. Alex Keller - Reconstruction

I had my appointment with Dr. Alex Keller. His office is in Great Neck. I didn't have to wait at all which was great since I was on my lunch. He told me all about the DIEP procedure. He has done over 1000 of them. He explained how the vessels are reattached with micro surgical techniques. He measured me all over and then took photos. Topless photos again. Back when I was 20 they would have been pretty good. Not so much now. After that he said I could get dressed. I started getting dressed and he said I could go in the dressing room. I thought that was pretty funny considering he had just done the exam and took pictures.

The surgery takes at least 12 hours. I told him that the other plastic surgeon said may appendectomy scar, which is vertical, may cause a problem with the vessels that are needed. He said that he does a test called a CT angiogram to all his patients prior to the surgery. It produces detailed pictures of the blood vessels needed to perform the DIEP procedure. He said this makes it so he can operate with a "map" of sorts rather than going around blindly. He thought he would be pretty sure what to expect from this test, but there is always the possibility that he could find something he didn't expect once he gets in there. He also advised me that it was very likely I would need a blood transfusion after the surgery. There isn't time for me to give my own. I could get friends or family to donate or I could use the blood bank.

He talked about recovery. I can't lift Julianna for 6 weeks. :( That is a biggie but it is pretty similar with double mastectomy despite the type of reconstruction. I asked how long it would be until I could drive. He said 10 days to two weeks. Not too bad. I asked about showering. He said I could shower as soon as I got home. Very good. I asked how long in the hospital. He said three days. I thought that was great since Sloan said they keep you a week for this procedure. He said it was all comfort care and pain management after the first three days and he thought I could do that at home. He said I would need a visiting nurse to come to my house for a few days.

We discussed the DIEP procedure vs. implants. For implants the surgical time is very brief. However, you need multiple surgeries. They initially put tissue expanders in. Those have to have saline injected into them every few weeks until your tissue is large enough to take the breast implant. After that, there is an exchange surgery. In that surgery they take the tissue expanders out and put the permanent implant in. The problem with the implants is that it doesn't end there. You have to get an MRI every few years to make sure the implant hasn't ruptured. Also, they are not made to last forever and have to be replaced at least every ten years. The other problem is that it is a foreign object in your body. You can get saline or silicone. There are a lot of people who feel that leaking silicone implants are responsible for a lot of medical problems. The surgeons say that hasn't actually been proven, but why take the chance? So, they both have risks. With the DIEP procedure all the risk is up front because it is a long surgery, but after that you are finished. No long term follow up. It is your own tissue and actually the breasts will gain and lose weight as you do. It looks and feels like real tissue because it is. With the implants you have less risk at the time of the surgery but more lifetime risk and more surgeries long term. I prefer to get it all over with at the beginning and get it behind me.

Now we get to the subject of money. I asked him how much it costs. He said $60,000. He said he doesn't take insurance. I almost started crying right there. I don't have $60,000 and all my friends put together don't either. He said not to get upset and that I needed to speak to the woman in his office who handles the financial end of things. He said he has never turned a patient away for financial reasons. I spoke to her and she said she negotiated with my insurance company. They will pay for the whole thing!!!! All I have to pay is $100. I can handle that.

Dr. Keller works with two breast surgeons. One is Dr. Karen Kostroff. She is the Chief of Breast Surgery for the North Shore - Long island Jewish Health System. Impressive. The other is Marie Chen, also located in the same area. When I asked the office staff who they liked better they said they are both good. They said Dr. Chen takes insurance but Dr. Kostroff doesn't. They suggested I go to both and then make a decision. I thought that sounded like a good idea. I have an appointment with Dr. Kostroff today and I am hoping to see Dr. Chen later this week. I have to bring all my films and tests to each of these doctors. It was a little strange to call Dr. Sclafani's office to ask for my films. I told them I was going for a second opinion. I am still not cancelling the surgery date with them until I am locked in somewhere else.

I will post after my appointment with Dr. Kostroff.