Friday, October 28, 2016

Proceed at your own risk........:)

The day of surgery I arrived at the hospital about 7:50 am.  We were directed to the Surgery Waiting #1.  "Waiting" of course is the key word there!  It was probably after 9 by the time I was taken into the nuclear medicine wing.  There I was placed on my side on this *very* narrow cart that had a sheet folded in such a way that two 3-4" edges of very cold metal were exposed.  Trying to very delicately lie on that sheet took some skill.  This very nice young man, that I took might be a student, was leading me around and said that the doctor would be in shortly.  In the meantime, he brought in the "injection material" in this funny looking dark blue tube that you couldn’t see through.  The doctor arrived and explained that he was going to inject the wound in four different places around the edge of it.  It would be a small amount with a small needle, and have some numbing medicine in it.  It would be like a bee sting momentarily, but would not last long.  THAT STUNG!  Take my word for it!  Then shortly after, they placed me under this giant camera and took several pictures.  From there I was to go across the hall to a big rotating camera that would take some 3D pictures that would help direct the surgeon to the lymph nodes.  When it was time to go, the young man told me that someone else was under the camera at the moment, and it would be about 18 minutes.  He led me down the hall to a quiet little empty waiting room and turned the TV on for me.  It was on OWN network, and Dr. Phil was on.  I really should have told him to just leave it off.  I really didn't need to hear about all the problems this man was causing his wife - with lots of cursing.  I just sat there with my eyes closed and tried to sing different inspirational songs in my mind to keep calm and pass the time.  He finally came to get me and onto another table I went.  But here he placed a big soft thing under my knees and made me quite comfortable.  Then this large plate with a bunch of Xs on it came down toward my face.  He said it had a sensor in it and would know when to stop.  It did when it touched my nose.  For 18 minutes, it moved very slowly around me while I didn’t move a muscle.  Then this big cylinder came over me and for 4 minutes it whirred and moved from the top of my head to near my chest.  And then I was done.  I got dressed and went back to the waiting room.  It was about 10:30 by then, but they were not to call me back to surgery until noon. BUT in the meantime Mark and Jeannine arrived!  Yay!  After a while a nurse liaison came to sit down by us and very thoroughly explained what my family could expect once they took me back.  She suggested that they all go get some lunch before the rush hit the cafeteria. They would get back in plenty of time to see me in the prep cubicle before they took me to OR.  So they left to get something to eat, and I sat with stomach growling.  They got back while I was still sitting there.  But finally they called my name, and led me behind the waiting room door through a maze of many prep rooms.  Everyone that I had encounter up to that point was just extremely nice – wanting to make you very comfortable and at ease.  These two in the prep bay were “OK”.  I just felt kind of like one of a herd of cattle they had treated that day – they were kind of robotic.  (You know….to be right honest, those OR prep bays are just like cattle shoots – run em in, stick em, and run em out!  I guess you have to have grown up on the farm or near a feed lot to appreciate that.)  The one that was going to start my IV blew the vein in my left hand.  (I had requested the IV in my left arm since I was right handed.)  That was very painful, and she didn’t think I was relaxing my hand enough.  Pretty hard to relax when it feels like someone is sticking a hosepipe up the vein on the back of your hand.  No numbing medicine used here like they usually do when they put a large bore needle in for surgery.  So she moved to my wrist.  She got in, but it wouldn’t give her enough blood to type and cross match.  So she taped it since it seemed open enough to run fluid in, but she called someone else to go to the antecubital (bend of the arm) to draw the needed blood.  That lady had a hard time getting enough blood.  I never have trouble with people needing to draw my blood.  I have great veins.  But I suppose I was a bit dehydrated, being NPO since midnight and forgetting to drink a lot the day before.  Plus, it was cold enough to hang meat in those places, so my veins were just hiding to get warm.  I wondered if that one in my wrist would last through surgery, but it did and lasted until I went home.  Although it was leaking by the time she took it out at dismissal.  And that was probably because I had just lifted my overnight bag onto the bed right before I left.  I was looking for some Tums I brought – that I knew I should not take – and I didn’t.  I asked the nurse for some, and she did eventually bring me one.

OK, back to the surgery.  The last surgery I had when I had my knee replaced they gave me Versed as I was being wheeled toward the OR room, and I never even knew when I entered the room.  I had hoped it would be that way this time – just put me out!

Mark had to leave for a conference call when I left for the prep bay, but Jeannine and Guy were able to stay by my side until time to go.  When they came into the bay and took my hands, that was the first time I almost cried.  To have someone on either side that loved me, holding my hands was so much more comforting than the “robots” that treated me like a number.

Then it was time to go.  Hugs and kisses, and off I went.  They didn’t give me the Versed until I was in the room and had moved over onto the table.  I guess they figure that is easier on them.  Then I heard, “Here comes the Versed,” and off to dreamland I went.  The next thing I knew was I was gagging on that plastic airway they have in until you’re awake.  It was soon gone, and I was feeling a fat lip on the inside of my lower left lip.  I’m sure they caught it between my tooth and something.  I was in and out for a bit, and she asked if I was hurting.  I was.  “I’m going to give you 100 of Fentanyl.”  Bring it on!!  That took the pain, but I also felt like I had to tell myself to breath.  I began to feel my heart beating in my chest.  Boy, I didn’t like that feeling at all!  And didn’t want any more.   I think the first thing I asked was if I had any hair left.  She said I had lots of it, and it was beautiful.  Well, she lied, but that’s OK.

Once awake well, I could see Jeannine and Guy at my side.  Jeannine said that the doctor came in to see me, but knew that I had no clue he had been there.  So Jeannine proceeded to tell me what the doctor had told them about the surgery.  They had taken both of the growths in one big removal to make sure there was nothing left between the two.  There was no skin graft because the surgery was more invasive than they had anticipated, and a skin graft would not take.  He had to go to the periosteum – down to the bone – on the large one to get all of it.  Instead of the wound being large around, it was deep.  The wound was a very large teardrop shape.  There was a drain hooked to suction coming from the wound. This big black teardrop dressing was held in place by a larger clear piece of plastic-like tape.  Thus more of my hair had to be shaved so that the tape would stick well. (Because of course we do NOT want that drain to be dislodged!)

I was told that the hospital was so full that I might have to spend the night in recovery, but if that happened, I would be moved down the hall to one of the prep bays that had a door on the front rather than just a curtain.  But thankfully, it really wasn’t too long before they said they had a room for me. Whew!  I didn’t really relish spending the night in the OR suite.  It would have been difficult for my family to come and go since you couldn’t get through the door without someone letting you in.

I was put in a double room next to the window and enjoyed visiting with my family until they had to go home.  The night was long and noisy.  Bells and alarms of all kind kept going off on the other side of the curtain.  My bed was actually quite comfortable.  I could hear it softly adjusting to me every time I moved, so even though I had to pretty much stay on my right side to avoid any pressure on the left side of my head, if I got the pillow just right, I could doze for a short time – in between the alarms and PCAs taking my vital signs.

I was asleep when 5 members of my surgeon’s staff came in at 6:30. There seemed to be a main man in that group, and he told me I would be going home that day – the day after surgery.  Somewhere along the line, the day of surgery, they told me I might be staying another day.  I think that was in recovery.  Anyway, he said that they were going to order a portable drain vac for me to take home, and after it arrived, I could go.  They left, and shortly after, my surgeon came in.  He basically told me what he did during the surgery, and that a plastic surgeon would be in to see me.  He basically laid out the options of the plan: if the margins of what was removed were clear, the plastic surgeon would close the wound.  If not, he would be going back in to take more tissue.  If the lymph nodes were clear, fine.  If not, he would be going back to do a neck resection to remove all the nodes on that side of my neck.  If that was the case, then chemotherapy was most likely the next step.  Soooo, that pretty much laid it out there.  At least there was a plan, and all hope was not lost.

About midmorning the plastic surgeon came in and told me that he was putting me on the Monday or Tuesday surgery schedule just to hold a place for me.  He would be getting in touch with me, and I needed to just wait for someone to call me.  Apparently this doctor and my surgeon work together sometimes, because during my surgery, my surgeon called him in to look at my situation, so he knew exactly what he would be  working with.  That was a very good thing.  Interestingly, they had done one almost identical to me the day before.

After lunch a discharge planner came to my room, and laid out the plans for home health to follow me at home, and asked a lot of questions about my home situation – which is fine and completely acceptable.  All I needed to do was wait for the company man who supplied the pumps to come.  He told me that they usually came at night, but it might be the next morning.  Oh, phooey!!  I had my mouth all set to go home!

Mark and Jeannine had come a little before lunch, and they went home about midafternoon.  Jeannine had 3 papers to write for school, and Mark had work in his home office he had to get done in preparation for his next trip.  So Guy and I waited it out.  But, SURPRISE, late afternoon, the man arrived with this enormous box.  I said, “I thought they told me the pump would be about a fourth of the size of the one on the end of my bed.”  Most of the box was taken up with the disposable containers that fit on the end of the pump.  Wow!  I hoped to not have THAT much drainage.  There had only been minimal drainage from through the tube the whole time.  Mostly all I heard were the constant squeaking noises coming from the back of my head.  He showed me how to set it all up.  It went in this little black bag which I could put over my shoulder to carry – EVERYWHERE I WENT. 

I told Guy not to get his hopes up right away – these dismissal events take forever!  I went ahead and dressed except for my top because the IV was till hooked up. I put my call light on to let the nurse know the equipment had arrived, and she said she would put in the dismissal papers.  After what seemed like an eternity, she came back for me to sign everything and did the dismissal teaching.  Finally she took the IV out.  She had told me earlier that she couldn’t take it out, but she could disconnect it.  She said they aren’t supposed to take them out until the last minute.  Even though mine was leaking all over the place by that time.  Ugh!  Then she called transport.  I know how long it takes transport to arrive, so we still didn’t get too excited.  Guy kept saying all afternoon, “We’re going to be driving home in rush hour.”  He was right.  By the time transport took me by pharmacy to get my pain pills prescription filled, and I got into the car, and we drove off, it was 4:54 pm.  Bumper-to-bumper traffic most of the way.  Still, it is not like Birmingham rush hour traffic.  We moved along, slowly.

My, it was nice to get home.  Mark and Jeannine had laid in some groceries with lots of fresh veggies and fruit.  One of Jeannine’s best friends is a wound care nurse in Colorado.  She had been texting her and showing her pictures all along the way.  The big word now was PROTEIN – lots and lots of protein for wound healing, so they had bought me some protein drinks.  It was just so nice to sit now and snack on all this fresh food!

I worked on getting this long piece of tubing looped up and attached to my pocket in such a way that it did not hang down where the dogs might trip on it or catch a wagging tail in it.  I found that very necessary for myself, because more than once I got up out of the chair to get something and forgot to pick the pump it up.  That pulled on the extra loop rather than my head!

If you don’t want to see the pictures, you can stop right here.

This first one shows my major comb-over!  There was this little strip of hair on the left side that went up over the top of my head. 

First of all, this hair was colored pink and stuck flat to my head.  And it was wet.  It felt just like broom straw.  I wondered what in the world I was going to do with it!  But you'll see about that a little later.

In this next picture, the shaved portion starts about even with the front of my ear and goes to the top of my head.  That is a drain tube coming out of the middle of the wound about 2/3 of the way down.

You can see that the shaving goes to about midline in the back.  All that bald area is covered with a clear piece of tape.  This was after Jeannine worked so very carefully to comb out the hair on the right side of my head.  You can see the pink in this picture.  A male nurse did come in with a shower cap that was towel-lined and wet.  He rubbed some of that side to get some of the blood out.  This was after that had dried somewhat.

Here is a closeup of the black dressing over the wound.  I said that it looked like a giant black SLUG crawling up the back of my head!  :)  You can't see them, but there are 4 staples place around it. That is what my home health nurse told me the next day when she took this closeup picture.

This just gives you a little better perspective of the size of the wound and the drain which was hooked to continuous suction that was electric and attached to the end of my bed.

Looks pretty normal (although shaggy) from this side.

About the first thing I did after I got home and ate was to have Jeannine shampoo my hair holding over the sink.  She gently dried it and just the straightening iron to smooth it.  Like I said, from the front I look pretty normal, but the back is hiding a whole other world!

This is just a close up the home health nurse took of the two incision on the left side of my neck where they took the lymph nodes.  I have some feeling in between those incisions, but none for a ways below the bottom one, and no feeling from the top one all the way to the top of my ear.  What's interesting is that I can stick my finger in my ear, and I have feeling, but I can't feel my ear at all.  There's no feeling in front of my ear, either.  The first time I reached up to feel that side of my jaw (without a mirror), I touched this flabby thing, and couldn't figure out what in the world that growth was on the side of my head - it was my ear lobe!!  :)

I included this picture to show what the lower one looked like about Sept. 1, about a month after I discovered it.  It was dark in the center with kind of a yellowish ring around it. It was smaller than a dime.  It was at this time, I was frantically trying to get a dermatologist to see me!

Below was about the middle of Sept.

This picture was taken on Oct. 6th, the day of the biopsy in Hutchinson at the dermatology office. Size was between a nickel and a quarter.

This picture was a day or so before surgery.  At this time it was bleeding/draining to the point that I had to carry a tissue with me at all times, and sometimes it would run clear down my neck before I could catch it.

At the time of this posting, it is Friday, the 28th, about 3:30 pm, and I have not heard yet about the pathology report from surgery.

Still in His hands....


  1. It has been a while since I've been to your blog (or any blogs except mine, as I have not been feeling up to snuff recently) so I did not know of your illness. So sorry to hear of all you have been through, but I'm hoping and praying the worst is over and things will be all smooth sailing from here. Be assured, Sheryl, that you will be in my thoughts and prayers. You have such strong faith and love of God, and I know from troubling times I've been through how much that helps. Love and God's blessing to you.
    Susan Cleveland

  2. Thank you so much, Susan. Your encouraging words and prayers mean so much to me. I do hope you getting to feel better soon yourself. Nice to hear from you. Miss all in the guild.