Saturday, October 31, 2009


Julianna in her ladybug costume
All dressed up


Cute as a bug!

I was so happy that I got Julianna such a great costume. Then when the day came I could only take her to two houses. It was so disappointing. She looked so cute and she was so excited. I just couldn't do it. Some of my friends took her to a few more places. I am hoping that I am feeling better later in the week and I will take her up to my work and to Grandma and Pop-pop's for some pictures. I am hoping things start looking up soon.

Friday, October 30, 2009

Post op

So far this is the worst surgery of all of them. I am questioning why I decided to reconstruct at all. There is nothing that helps the pain and I have tried them all. If anyone has any iv pain meds please stop by. I think taking Julianna around in her costume tomorrow is not going to happen. Right now I can't even take a halfway deep breath so a walk is out of the question.
please keep your fingers crossed that this turns around soon,

Tuesday, October 27, 2009

Home from Surgery

Mary Ellen called me, sounding pretty good, and asked me to post. She is home from today's surgery, but she is in a lot of pain. Cathy is with her. She will post more tomorrow when she feels up to it. Love, Kathleen

Off to Surgery

Stay on the streets of this town and they'll be carving you up alright.
Cathy is here and we are off to the hospital. If all goes well I will be home tonight. Keep your fingers crossed.

Sunday, October 25, 2009

Today - Pictures

My Mom, Passed away in 1981 at age 44

Julianna trying to put flowers on my Mom's grave

Julianna trying to carry the flowers and her ducks

Julianna not understanding that you are supposed to put the flowers on the grave, not your whole self.


My Mom

Today is the 28th anniversary of my Mother's death. We always thought she died of multiple myeloma. After I was diagnosed with breast cancer almost every doctor I saw said that is highly unlikely. They said women of that age really don't get that. They asked where her primary bone sites were. When I tell them it was her arm and her neck they just shake their heads. They all say that it is much more likely that it was breast cancer that went to her bones. Which is, of course, where breast cancer goes.

I have a strong memory of her having a lump in her breast. I was about 14 or 15. She went to her OB/Gyn and he told her it was a clogged milk duct. She was so happy when she heard that because it eased her mind. She had nothing to worry about. She was dead a few years later. She never had a chance.

Things have changed a lot in 28 years. Treatment has progressed so much. I don't think a doctor would sent anyone with a suspicious lump away with no further checking. When I went I had a needle biopsy, mammogram, sonogram and core biopsy within a week. I don't think there was too much they could do back then to save you anyway, but I wish she would have had a shot.

So, I am not positive she died of breast cancer but I am 90% sure. This is from what all the doctors said plus research I did about both things. Her disease really did progress like untreated breast cancer. It also follows the timeline. It often occurs about two years after a pregnancy. It also takes about 7 or 8 years to kill you if you do nothing. My brother Richard, the baby, was 10 when she died.

This is interesting because up until I was diagnosed it never occurred to me that I had any increased risk. My Grandmother had it but she was over 70 when she was diagnosed. They say that isn't an increased risk for others. My first cousin also had it but she always thought her risk was from her Dad's side. She is BRCA+ and I am not, so maybe that is true.

Julianna and I went to the cemetery today. I was trying to get her to put flowers on my Mom's grave but she really didn't want to cooperate. First she took all the petals off one flower. Then she sat on the grave marker. After that she tried to take all the flowers off the other graves. Finally we got the flowers on there. RIP Mom.

Friday, October 23, 2009

MUGA scan

Today I went for my MUGA scan. (Multi gated acquisition scan) It is a nuclear medicine scan used to evaluate the function of the heart ventricles. I had this test to determine a baseline of my heart function. The reason for this is that the herceptin I will be taking can cause damage to the heart.

When I got there they took me in pretty quickly. The doctor gave me an intravenous injection of tin (stannous ions). I then had to go back to the waiting room and wait half an hour. They then called me back and gave me another intravenous injection of a radioactive substance (technetium-99m-pertechnetate). The technetium labels the red blood cells and the stannous ions keep the technetium from leaking out of the blood cells and dilutes it somewhat. She was actually pretty good at hitting my veins and I would like to bring her along to wherever the next place will be.

Next, I had to lie down on a skinny table and it moved into a cylindrical device which was a gamma camera. It can detect the gamma radiation given off by the technetium. They moved the table up and moved plates down over me at different angles. They came very close. It made me think that it must be how a bug feels just before it is squished by a shoe.

They did three series of pictures, each at a different angle. Each set took about seven minutes and in between she changed the angles of the plates. The hardest part for me was that I had to keep my arms above my head. That was not so bad for a few minutes but it got more painful as time went on.

The test is supposed to give a series of images of the heart, one at each stage of the cardiac cycle. The images show the blood pool in the heart and a computer is used to calculate the ejection fraction of the heart. Ejection fraction is the fraction of blood pumped out of a ventricle with each heartbeat. The normal value is between 50 and 80. If my ejection fraction should decrease during treatment with herceptin it means that it is damaging my heart. The damage sometimes repairs itself when herceptin is discontinued. Of course I did not get any results. They always make you wait. I will need to get these scans a lot of times during the year I get herceptin and at the completion of treatment.

As I was walking out she asked if I got my bone scan yet. I told her I had it and they said it was fine. As I got in my car I started thinking. Why did she ask that? Did she see something on my sternum? Can she even see anything like that on this scan? Is it in my bones now even though it wasn't six weeks ago? I realize I have to chill. I guess when you have this you always worry. I know I will. I don't know when I will stop worrying. I wish I could start the chemo right away. Tonight would work for me. Unfortunately it won't be for a few weeks. I need to know I am doing everything.

So, again I have to flush twice due to radioactivity. Also, my dog Smudge loves toilet water and I have to make sure he can't get near it. He learned that bad habit at my neighbor's house. I don't want him to glow, even if I will soon.

Thursday, October 22, 2009

Stitches Out - Planning For Surgery

I went to see Dr. Keller today. First the PA took out all the stitches. It took a long time and it looked like a big pile of dead bugs by the time she was finished. After she was finished I saw Dr. Keller. He explained that the surgery on Tuesday would be to place a tissue expander. It will go behind my pectoral muscle. He said he would have done it when he removed the failed flap but my risk of infection after two surgeries was entirely too high. He said it is still higher than he would like, but we can't wait anymore. We can't wait because the skin will start to contract if it isn't filled. If you lose your original skin reconstruction is not so great. We also can't wait any longer because they won't start chemo until it is completely healed. If we did, there is too much risk of infection. We don't want to wait on the chemo any longer than absolutely necessary.

He said to expect this surgery to be pretty painful. He said it wouldn't be so bad normally, but it is already pretty inflamed after two surgeries so it will hurt. He said I will get a drain again. That is a bummer since I just got rid of six and also because it leaves a scar. More scars. Uggghhh. It will be slightly filled with saline. It will have a port where saline can be added. I will have to go periodically to have it filled more and it will be painful each time because it stretches the perctoral muscle. When it is at the desired size it can be replaced by a permanent implant. They are called that but they are not really permanent. It will have to be replaced every few years. That requires more surgery.

Dr. Keller brought up the possibility of doing another flap. I told him I was open to that, but not now. He said he would never even consider doing it now since I just had so many hours of surgery. He said my body was not in any shape for a big surgery. He said we could talk about it after the chemo is finished.

The surgery Tuesday will be a one day surgery. I am so glad because I have absolutely no confidence in the floor care at LIJ. The only reason I will do this there at all is that I have no choice. Dr. Keller also assures me that I will be very carefully monitored. I can go home at the end of the day. My friend Cathy is going to stay here on Tuesday night to help me. My babysitter Christine is going to keep Julianna overnight on Tuesday. My Dad and Betty are going to keep Julianna Monday night since I have to be there at 6 am. Thanks everyone!!

So, here we go again. I would have gone back to work next week if it weren't for these extra surgeries. It is a big bummer because I am now returning to start after all the post op gains I have made. Hopefully it won't take so long to get better.

Driving around today was great. Since I know I won't be able to do it soon it was even better. I like to LOL. It was warm out. Windows down, sunroof open and great tunes. It doesn't get better. Keep your fingers crossed that surgery goes as planned.

Tomorrow I am having a MUGA scan. I will post about it after.

Wednesday, October 21, 2009

On the road again!!!!!!!!!!!!

I can drive!!!!!!!!!!!!!!!!!!!!!! WOOOOOOOOO Hoooooooo!!!!!!!!!!!!!!!!!!!!!!!!!!

Tuesday, October 20, 2009

Dr.Marc Citron

I went to the oncologist today, Dr. Marc Citron. It was good and bad. The good part is that I liked him and the office staff. The bad part is that the facts are tough to swallow. He said my chance of recurrence with no further treatment is 30%. With chemotherapy, taxotere and carboplatin in conjunction with herceptin the chance of recurrence goes down to 10-20%. That seems so, so high to me. This is tons of treatment. Monstrous disfiguring surgery that I have been told left me looking like an aerial view of the Jamaica rail road station (pretty funny actually), tons of chemo and a year of herceptin. I would think the risk would be lower with all that.

I have not been lucky when it comes to medical risks. The risk of HELLP syndrome in pregnancy is .5%. Got it. The risk of the flap failing in a DIEP surgery is about 1%. Mine failed. So when I hear 10-20% it is very scary. The good part about this aggressive cancer is this, if you can get through three years the risk goes down a lot. It goes down a lot more by five years and is almost completely gone by eight years. ER/PR+ cancers retain risk for many, many years. It is not uncommon to hear of a recurrence 20 years later, but there recurrence rate is much lower from the start. So turning 50 will be very happy for me. It freaks a lot of people out, but I will be thrilled to get there.

Of course, I will do whatever they suggest. I will do the chemo. It will be six times, every three weeks. The herceptin will be every week at first and then every three weeks for a year. He said there is an experimental pill for Her2+ cancers. It wouldn't be until after I finish the year of treatment but I told him to sign me up for that too. Experimental or not, count me in.

He said he thinks I can work through treatment. I will need at least one day off every three weeks for the infusion and possibly other time, but he says I can try to do it. This is important to me, to try to stay regular. I have a disabilty policy so I would make more money to stay home, but that is like giving up. I have really never been one to give up easily. Never give in.

I worry about Julianna and how this will all be for her. I also worry about her being the fourth generation to get this. I sure hope they make some progress before that is possible. I hope there is some type of vaccination or other preventative measure. One in seven women on Long Island will get breast cancer. One in eight nationwide. The risk is very high. Way too high.

Monday, October 19, 2009

Drains out!

I went to Dr. Kostroff today. She removed all six of my drains. It hurt a little. My friend Cathy went with me and she said she almost passed out. That would be a bummer especially since she is a paramedic. Dr. Kostroff cut the stitches that held the drain in, opened the drain ball so there is no suction present and just pulled it out. The first one was in my left armpit and that hurt the most. The four abdominal drains weren't bad at all. The right armpit also hurt, but not as bad as the left. The part that was inside my body seemed to be about six inches long on each drain. It was somewhat gross, really.

Now that the drains are gone I can get into some different positions and that helps. All my sutures are in. I am hoping they come out when I see Dr. Keller on Thursday.

Dr. Kostroff also gave me a copy of my final pathology report. It details the tumors and grades everything. My tumor is a grade 3. Bummer as that is the highest (worst ) grade. This means that it is a very aggressive cancer. They grade it using the Bloom-Richardson scale. On that scale my tumor characteristics got an 8 out of a possible 9. There were also three tumors. The main one was 1.7cm. The other two were 6mm and 4mm. The tumor cells of all the nodules show the same morphological characteristics and grade. There were also multiple foci of ductal carcinoma in situ (DCIS) in numerous other areas of the breast. DCIS is considered a stage zero cancer. It is cancer that remains in the breast duct and has not yet invaded other tissue. All the tumors had very wide margins. That essentially means they got it all.

This pathology report makes me so glad I made the decision to do a mastectomy instead of trying to treat it with a lumpectomy. I think knowing it was the right decision helps a lot.

So, the question I keep getting is "Why chemotherapy if they got it all?" The problem with breast cancer is that it can show up many years later in other parts of the body. There can be stray cancer cell that get into the blood or lymphatic system and then grow in other areas of the body. The goal of the chemotherapy is to kill any of these cells. I am not sure what my course of chemotherapy will be. I have an appointment with an oncologist, Dr. Citron, tomorrow. I will find out a lot more then.

Thanks to everyone for all your support. I love and appreciate you all. I am hoping this cancer will soon be a distant memory.

Saturday, October 17, 2009

More Pictures

Smudge welcoming his Mom home.
My arms on Sunday 10-17-09.

Post op, second time.


Pop-pop, Julianna, Grandma Betty and me. Taken 10-5-2009.
Julianna and her Momma, 10-5-2009

At Bruce Springsteen 10-8-2009

Waiting for surgery. 10-9-2009. Nice jiffy pop hat.

Kathleen waiting for surgery

Home - Slow Recovery

I am home. That is great but this is going pretty slowly. My underarms and hands are especially painful. My hands are really bad because they missed so many times trying to get the arterial blood gases and the arterial line. They are black, brown and green from my hands to just above the elbows. It is hard to eat or turn pages of a book, or type. I think the underarm pain is from the removal of the lymph node on each side. Everything else hurts but is getting a bit better. It is upsetting that I really can't do anything for Julianna. I am thrilled and very thankful that I have so many great people to help. My friend Jessica has Julianna right now. My friend Cathy took my dog Smudge on a hike today and slept here last night to listen for Julianna and me.

Thanks to everyone for the food, visits, calls, cards, babysitting and good thoughts. It makes me know that despite everything I am very blessed.

Thursday, October 15, 2009

Final Pathology

I realized I never posted about the final pathology report. The tumor was 17mm. The sentinel nodes were negative. The cancer is stage 1. It is ER/PR negative and Her2 positive. It will require chemotherapy. It might not be as intense a therapy as they originally thought, but that will be up to the oncologist.

Dr. Kostroff gave me the information. She is certainly one of the nicest people I have encountered throughout this ordeal. I meet a lot of surgeons through work. I have to say that a great deal of them have huge egos and the inability to relate to the patient. This is not the case with Dr. Kostroff. She is super kind and compassionate. It is nice to see that, with all her success, she didn't lose the point of the profession. Truly an excellent physician. I go back to her Monday. I am not sure when I will see Dr. Keller. Long road, short steps.

Home - Nice!!

It is nice to be home. I got to see Julianna today. She hopped up on the recliner with me. She just kept saying Momma, Momma over and over. She snuggled in with hrer blanket. I wonder what she was thinking when I never came for her. Its hard to know how their minds work. It makes me sad that even though she was with people who love her, she can't understand what is happening.

This healing process is going a lot slower than I would like. Day to day it gets better but knowing that I am going to be back to zero soon is making it a lot harder. The idea of another surgery is overwhelming to me. I hated the hospital. It was super loud, pain management was terrible. If I go back I am bringing my own tylenol and benadryl. There was a mean nurse at night with a Russian accent. Somehow a Russian accent makes people seem meaner. I think I watched too much Rocky and Bullwinkle when I was a kid.

My sister Kathleen is flying back to Oregon right now. I am sorry this trip was such a downer. We did get to go see Bruce Springsteen, and of course that was great.

Thanks to everyone for everything. You have all have been great and I am really lucky to have such great people in my life.

Wednesday, October 14, 2009

Home from the Hospital!!!!

Mary Ellen is out of the hospital and resting in reasonable comfort with her beloved dog Smudge by her side. Wonderful friends from work have sent a selection of delicious foods. I'm guarding her rest. I go home tomorrow. -Kathleen

Tuesday, October 13, 2009

Another Long Day of Discomfort

I was at the hospital all day. At first Mary Ellen was in a lot of pain and we couldn't get more pain medication. Then the nurse, Susan, who has been very gentle and helpful, called the pain management team. They came and assessed her and changed the pain medication and added back the IV Benadryl. I was glad that they were willing to listen to me that so much complaining was wildly out of charachter for her and that I saw a marked personality change which told me the pain was severe.
Mary Ellen's room is across from the office of the nursing manager and she was clearly having a very busy day investigating the series of mistakes that led up to Mary Ellen's loss of the grafted tissue. For a long time I sat in a chair outside ME's room door stopping extranneous entrances to the room, shushing people and guarding her sleep, which was so precious to her. During that time in the hallway it was evident that the staff knows a major incident occurred, and one meeting after another took place across the hall.
We had visits from quality control and other departments which came to get ME's story. I made them come back when she woke up. Dr. Kostroff came to visit. She remains distressed.
I hope to get Mary Ellen home tomorrow and settled in where she can actually sleep.
I will have to fly back to Oregon on Thursday. -Kathleen

From the Hosital - MaryEllen

So, after 20 hours of surgery I only have one breast. The whole point of doing the immediate reconstruction was to have it all over with and now its worse than ever. The first surgery was 15 hours. There was a lot of pain after. The second night I was in excruciating pain. The left breast was so hard and swollen. It was extremely discolored and the stitches were pulled almost to the point of breaking. I made numerous complaints to the nurses and the resident. I called Dr. Keller from my cell phone. No one did anything.

I told the nurse I needed some help and he said he wasn't going to wake the resident again. When the resident came in he said he thought the capillary refill looked fine. It didn't look anywhere near fine. It was obviously filling up with blood that had no where to go. It was strangulating. He just did nothing. The nurses didn't know what they were looking at.

In the morning two surgical residents were doing rounds. They looked at it, freaked out and said we had to go back to the OR. Dr. Keller came in and looked at it and said he was going to try to save it. They took me back to the OR. When I woke up it was 5 hours later. They couldn't save it. The ironic part is that it is not the breast with the cancer.

I spoke to Dr. Keller this morning. He said there were numerous errors made. He feels it could have been saved if he were notified in time. I will need at least two more surgeries.

Monday, October 12, 2009

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

Sunday, October 11, 2009

Up and Walking!

Today I got to the hospital a little after noon, with an iced tea and a Carvel chocolate shake (a Nancy treat) and Mary Ellen was getting ready to get up for a walk. The kind nurse, named Priya, and I, took ME for a stroll down the hall and back. Her hematocrit was quite low and the doctor had ordered a unit of whole blood. As a paramedic, ME has donated hundereds of pints of blood. Now, because she has cancer, she will not be able to donate again, but it's about time she received some of that blood back, so a unit was ordered for her.
She has low blood pressure, so they were having a hard time finding a vein for the new IV. Specialists were called. As a paramedic, ME has put IV's into all kinds of traumatized people while hurtling through traffic, so to watch several people not get a vein on her was hard. Vanna and I were there as a special IV team person got it on her third try.
The catheter was removed, and the pain medication is now only Tylenol. I find this incredible, as I would think they would need elephant tranquilizers to keep her from screaming after such an intense proceure, but somehow the Tylenol is enough, and she is in good spirits.
I left while Dad, Betty and Vanna were there, at about 5 PM.
So far, so good. She will be sent home tomorrow or the next day. Thanks, Kathleen

From Recovery to Room

Kathleen here again.
I went to the hospital this morning to be there as ME was moved into a room. As I turned the corner expecting to see the now-familiar lush growth of impatiens in bloom with their fun little bursting seed pods, I was taken aback to see that all the lovely plants had been pulled out and dumped into a truck bed, and a crew was planting chrysanthemums. I felt uprooted myself.

MaryEllen was still in recovery and they were waiting for her surgeon to arrive an clear her for a room assignment. Obviously he had a very tiring long day yesterday himself, so no one felt he should hurry. When he came in he said Mary Ellen looked very good, and he told her that the blood vessels he had to work with had turned out to be much smaller and shorter than he had expected, making for a trickier and longer surgery. The oxygen saturation on the transplanted tissue looked good, and he told me to keep reminding ME to breathe deeply to keep the tissue full of oxygen.

She was then moved to a room, unfortunately by a pair of bumbling idiots paying more attention to their cell phones than to the many dangling lines hanging off the bed that were attached to ME. They were so bad that the floor nurse promised to report them.

It took a while for our new nurse, Susan, to get ME all settled. She needed Benadryl for the itching associated with the anesthesia meds, and then her flaps had to be checked for capillary refill and all SIX drains had to be emptied and the fluids measured.

Overall things were promising, but MaryEllen was very uncomfortable and itchy and nauseated and not thrilled that the doctor's orders included getting her up and into a chair.

I left after she was all settled and went to meet a friend and have some time to regroup.
I had asked people to refrain from visiting because when ME would finally get to sleep, she would need to be left to rest. She did ask to have her next-door neighbor Lori come and bring her favorite soup and a Wendy's chocolate shake.
I will see her tomorrow, and I'm sure there will be more visitors then. Goodnight, Kathleen

Saturday, October 10, 2009

Surgery Success!

I just got back from visiting ME in recovery. I went with Colleen, ME's friend who is a breast surgery recovery nurse at a different hospital.
She is slightly awake. Colleen assessed many aspects and says she looks great. Vitals are terrific, incisions look good, and there is a nurse devoted specifically to ME. She will remain in recovery all night and then we'll se her tomorrow. Sleep well, Mare! Love, Kathleen

Friday, October 9, 2009

Still In Surgery

It's 9:45 PM and Mary Ellen is still in surgery. This is not unusual, and we were told it could be even a few more hours. I will go see her briefly later tonight.
She will be moved into a room tomorrow around noon. She will be VERY out of it for a while, and it may be best to hold off on visits until Monday to let her rest. I will give her her cell phone, turned off. You can leave her a message to listen to when she feels up to it.
I know a lot of people are anxious to visit, but please consider giving her a day to recover first. The visits of her very closest friends will probably be enough tiring out for the day.
I know everyone's support means a lot to Mary Ellen. She will need it in the weeks to come, especially. Those of you who have my cell #, call for an update between 12:30 and 1:30 Sunday. After that I will post a message on my phone and turn it off for a while. Thanks, Kathleen

No Nodes Is Good Nodes!

This is Kathleen here, guest blogger.
Very early this morning I went with Mary Ellen to the hospital. She was in good spirits and strong as always. We went to the surgery area where she changed into hospital garb and waited a while for her surgical team to come and talk to her. Several different advocates and surgical staff came and let her know what to expect and answered questions. Every one was kind and helpful. After they took her in for the surgery I went to wait in the designated waiting area, but I couldn't stay there because there were competing TV's and I am highly allergic to television, so I went to wait in the chapel where I read the Koran and looked at the Torah in squiggly Hebrew.

After a while I returned to a smaller waiting area and was able to mute the TV while I was the only one there.

Finally the first surgeon came out and told me the good news: no cancerous nodes! There will be further node tests, but so far so good. She said Mary Ellen is doing fine in surgery, responding perfectly to all the meds and holding strong. They sent me home to update all of you and get a nap. I'll be going back there briefly later tonight while she's in recovery, and tomorrow I can visit, as she'll be in a room.

I'll update you as more info becomes available. Thanks for all your support, Kathleen

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!!!!!!!!!!!

Thursday, October 8, 2009

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

Monday, October 5, 2009

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!