On Our Way to the Hospital

We are just about to leave for the hospital. I am lucky I woke up in time. My alarm clock never went off. It is about 20 years old. I never usually use it because I almost always just wake up when I want, like today. It would have been nice if it worked, just for a sense of security.

Anyway, off I go. Super nervous. My sister Kathleen (Kate) is going to write on here to keep everyone updated.

Thanks for all the support. I love you all!!!!!!!!!!!

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!!!!!!!!!!!!!!!!

Getting Everything Done, Running Out of Time

The surgical date is getting closer and I have not finished everything I wanted to. There is never enough time. I did get a lot done, lots of medical appointments, made a will, figured out childcare for Julianna, set up consents so the people taking care of her could take her to the emergency room if they had to, visited people, checked on my life insurance, etc, etc. I would like to thank everyone for all the calls, emails, cards, letters, and gifts. You are all great. If I haven't gotten back to you yet I am sorry. I will be in touch with everyone as soon as I can. It has been really hectic and I will never get to everything.


I had the CT angiogram Monday. This test is to map all the vessels the plastic surgeon will need in order to perform the reconstructive surgery. It will also tell if I have any vessel damage from previous abdominal surgeries, appendectomy and c-section.



I got there at 12 noon. They brought me back at 1:15. I am noticing that this is common. No one seems to be running on time.



First they wrapped me in multiple blankets taken directly from the warmer. Pretty cozy. Then they started an IV that they would use to administer the contrast. They had me change into two gowns. One gown open to the front, one to the back. I had to lie on the table and they covered me with more blankets from the warmer. They Had me lie down on a table. Then it slides into a cylindrical thing that spins at a high rate of speed. Occasionally a loud voice will say "hold you breath" and then "breathe". At some point during the test they infuse the contrast. It is done by a machine and the tech doesn't have to come back in. I have had a number of CT scans with contrast. In makes your entire body get warm. I was ready for it but this time it was different. It was not a slow warm feeling. It was super hot immediately and it was hard for me to catch my breath. When the tech came in I asked her why it was like that and she said they infuse it extremely fast so they can get the arterial phase of the vessels. That would have been nice to know so I knew what to expect.

The test wasn't too bad. I won't know anything about results until I go to the plastic surgeon later today.

On my way home from work Monday I had to get a chest xray. It was fast and easy. I am pretty sure I will glow soon if I don't already.

Later today I have to go to the plastic surgeon. This time tomorrow I will be in surgery.

I would like to thank everyone for the tremendous support. It has been really great and I really appreciate it. I love you all!

Pre-surgical Testing

I had some pre-surgical testing today. I got to go to my own doctor, Jorge Gardyn. I had an EKG, bloods and urine. I still have to have the chest x-ray. It will probably be on Friday due to work and childcare.

As the surgery date gets closer I realize I have tons of things to do before I am ready. I have the CT angiogram on Monday. It is at noon, but I think it may be an all day thing. I am going to go to work Tuesday but I think that will be it for work for awhile. I have to try to get things done around here that I won't be able to do for awhile.

I am worried about what the final pathology report will show. I am also worried about the nodes. I am having some discomfort in my right armpit. I know that may be a bad sign. They said it could be from the biopsy trauma or possibly due to issues from my shoulder because I had surgery on it a number of years ago. However, there is a realistic possibility that it could be nodal involvement. I think the waiting and imagining is worse than actually knowing about a bad reality. So far its been helping to stay busy, busy, busy.

Thanks to everyone for your prayers, support and encouragement.

Surgery Confirmed for 10/9

I spoke to the doctor's office staff today. The surgery is confirmed for October 9th. I am glad it is finally really scheduled. They haven't given me the time or anything yet but i am sure that info will come soon.

Thanks everyone for your support.

Dr. Kostroff

I had my appointment with Dr. Kostroff. She was very nice and answered all my questions. Since she is the 4th breast surgeon I have seen I am getting pretty good at knowing what to ask. She can do the surgery on October 9th. She works with Dr. Keller all the time and it sounds like they have a pretty good system down. She looked at all my films and she said she will send my biopsy slides to LIJ.

She agrees with my decision to do a double mastectomy. She feels that the family history is so strong that it makes the risk high enough to justify it. She will do the sentinal biopsy on both sides. When I said I was concerned about my arms being hyper extended during the surgery she said that they are doing special things to reduce the risk of injury during the surgery. They will check for position of comfort and move my arms and legs during the surgery to reduce any injury from lack of movement or weird positioning. All good.

She said she can set me up with an oncologist who does strictly breast oncology and is on my insurance plan. That is great and I did not know there were even oncologists who worked with only breast cancer patients.

Now we get to the money. Always an issue. She doesn't take any insurance. I spoke to her financial person. She said my part of it would be $10, 500. I said I didn't think I could use Dr. Kostroff and would have to keep looking for someone on my plan. I am a little on the edge and PMSing on top of it so I just started crying. Dr. Kostfroff was nearby and said to come in her office.

When I went into Dr. Kostroff's office I explained the whole Julianna birth story to her. I said I had great insurance and was using an OB on my plan. Then, I got preeclampsia and HELLP syndrome. It led to kidney, liver and heart failure. I had severe cerebral edema and was going into DIC. They did an emergency c-section. The surgeon wasn't on my plan. The anesthesiologist, not on the plan. The sent in a hematologist, GI doctor, kidney specialist, neurologist, opthamologist, cardiologist, pulmonologist, family practice and on and on. As far as Julianna, the neonatologist, not on the plan and $1500 a shift, times 16 days. All in all, I am very happy we are both alive, but it was almost $60,000 by the time it was over, and that was just my 20%. Everything I had saved over 20 years was gone in 16 days. It is still not paid. So, here we are with catastrophic medical event number two in less than two years. I explained to her that I can't do it. She said she understood and agreed to take whatever the insurance paid her. I thought that was really nice and a HUGE relief to me.

Its funny, with the huge debate about healthcare these days I hear so many people saying how great their personal insurance plan is. I say get back to me on that after you have a catostrophic medical event. Just because you think everything is covered doesn't mean it is. The doctors who see you in the hospital bill separately from the hospital. I was covered for the hospital. If you need specialists, and you never know, you are probablly not covered for them all. Even with good insurance you are probablly responsible for 20% of the bill for those not on your plan. Let me tell you it will not take long to add up big. I do not really know anything about the current plan being proposed, but I can tell you that something really needs to change.

So I am happy about her working with me on the financial end. I really liked her and it sounds good. They said they would call me back tomorrow to confirm the date for 10/9.

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.