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.

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

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.

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

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