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

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

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

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