The donor area on my leg is healing, rapidly, I hope.  I am spraying it with Bogdana mixed with filtered water.  Bogdana is a liquid vitamin invented to cure leprosy. I would use it on my head but I am not able to get my head wet yet.  I will call Dana, Dr. Rick's nurse to find out when I can get the graph wet.  When oh when do I get to wash my face?  The graph on my forehead is starting to get feeling!  (more pain pills).  The leg is sore, itchy, but if I rub near it to try and relieve the itch then it burns and burns.  (more pain pills).  Ugh...Surgery was 2 weeks ago, here is the leg now, you can imagine how it has slowed me down.  I taught two classes today!  Yeah for me.  Bridge with mom tomorrow (yeah) then I work tomorrow night.  Wednesday I'll take an afternoon nap and play at night.  I dont think I can exercise til the head gets better. I dont want to put stress on my new forehead and who know what will happen if I work up a sweat!

 I will wear a skirt for awhile.  Heal!!

From the way Dr. Richardo Gonzalez from the Moffitt Center in Tampa sounded Thursday evening I think he had just found out!  The pathology over there takes over a week to analyze.  After the first surgery huge surgery on the 5th they sent me home for a week to analyze the skin to see if there were clean margins, There were not.  Dr. Rick told me he would take 1/2 cm more all the way around before he attached the graph.  I know when I saw him on Wednesday the 20th to remove the bandages that he did not know the results yet.  However, the 2nd pathology report which took over a week was CLEAN.  Dr. Rick himself called me and he was so happy, as Jennifer, my daughter, said "He is never happy!"  And that is true, he has nightmares about AS, the removals and the failures, so I can understand him being guarded and not to give too much hope, but he was happy and that made me cry instantly and gratefully.  Thanks for your comments and prayers.  I found Dr. Medina at 1st Line Oncology.com for the radiation, it is not too far from my home.  Hopefully Dr. Rick will like him and work with him. I go for my appt to meet him on the 6th of March.  I go back to Dr. Patterson, the onc at Holy Cross on 3/5.  I have joined the AS group on Facebook.  What a wealth of information directly from others around the world who all cry out FUAS and pray for each other.  I am rare, but not alone. 
I am in pain but just the leg as it grows new skin.  Geesh.....I am still taking pain killers and I have a high tolerance.  Waking each morning with swollen eyes too. 
I am back at the club, working just a bit.  There are some great people at the bridge club, so loving and supportive, and not just my bridge club but bridge players that i know and have known are all praying.  Thanks!  you are doing a great job.

Chica Chia.  Now smile some more.

Mark this date, Mark this time 2/21 5:55PM.  I just got a call from the surgeon at Moffitt.  The margins of the last surgery are CLEAN.  OMG.  This is like a miracle.  Still need radiation but the outlook is SO much better.  Thanks for your prayers. God please listen!!

So I had Paul take a picture of my head, emailed it and looked at it and yet this morning when it was time to change the bandage, I said we will wait til after bridge.  So home we come, and mind you I have looked at this picture all day and showed it to people.  But sure enough in front of the mirror when the bandage came down I was devastated and howled like a baby.  Shocking.  I will keep it bandaged for about 3 weeks.

Home safe and sound, Paul is a wonderful and fast driver so we always make good time.  We have lots of strawberries, I'll bring some to the club for snacks on Thursday afternoon.  We met wtih nurse Heather Bridge, I had met her before.  What a sweet nurse.  I love her and am encouraging her to learn the game of bridge.  She removed all the bandages, the head wrappings were stuck and hurt a bit,  I had taken an Oxycodon and a xanax but was still hurting.  She was as gentle as she could be.  Dr. Rick Gonzalez showed up, I was so grateful.  He said the forehead looks perfect and will take 6 months to look like a normal scar.  A few of you have seen the photo.  Pretty grusome.  Think Ill wait to post the pic here or facebook.  I will change my bandages everyday for a week while applying neosporin.  Then another week of bandages with aquaphor.  And then maybe no bandage, maybe a dorag.  I dont think my head will feel good for quite some time.  Doc says about 6 months. Then maybe a wig or a combover.  Meanwhile I want to teach and run the club, I hope I dont scare people away.  Doc says the resection was perfect and the leg is healing normally.  Man is it sore!  Looking for a good place for radiation theraphy here near home.  I am comfident we will find the right place for the treatments.  Really tired.  Night All.  Time for another pain pill and sleep.  Oh I asked Doc, "Are we looking for a cure or an extension of life".  He said  "We are looking for the best we can get."  And my eyes have been swollen because of the surgery.

Moffitt tomorrow to change these awful bandages.  I am still leaking but not as much.  I still get pain but, like yesterday, I only had one pain killer.  Ate tons of kale chips and quinoa and chicken.  I snacked, well I was home alone,  I napped,  good for me, and I worked on flyers and the website information.  I have hired a new director and added a new game at the club.  Very exciting to watch this club grow and fill up.  We need another parking area.  Yes, as you can see, I am very involved with the club and am grateful for the outlet. I am reading 50 shades, Sharks still dont get cancer, and the Kris Carr crazy, sexy, cancer books.  Looks like I have to eat organic and stay away from stress.  Well, Ill try organic.  The only stress at the club are the fights.  But I will learn to handle that stress.  I want to play, I want to teach, I want to manage for as long as I can.  I dont want to move away for the radiation treatments.  I want a facility close to home.  Sure hope I get to vote about this.  I think I should get a vote.  Thanks for your notes, your concern and your continued prayers.  What are we praying for? That I can follow a regiment that will prevent future tumors.  Great...then its my fault if/when they return.  Something I must have done wrong.  What did I do wrong to get this stupid disease?  I am special...great.  
So everytime I eat a piece of cake, sugar!  Not allowed.  At this point? What are we praying for?  Acceptance and Resolve to Fight.  I will fight but I will not have more surgery.  This is awful and depressing.  

Oh boy, I put on all the stuff, pads, tape, gauze, brown wrap and netting, I was perfect and did not drip at all during the game. I was so proud of myself, then I felt the wet at the top of my skirt and bottom of my shirt!  It came out the top! No fair!  I dont think I should be at the bridge club yet.  However, I will probably try again on Sunday.  I hate to stay home.  I will take another week off from teaching and directing.  I need to research radiation.  I might not be interested.  I started shark cartilage today.   Online bridge for me for now.  It was nice to see everyone today.  Everyone was really great.
I love playing bridge with my mother.  That was the best!! 

I am a mess but I am going to bridge.  Playing with mom, the walking wounded, both of us.  Cant wait to see all my friends at the club.  I started Metamucil, thanks to Gloria, and extra stool softeners and finally was "rewarded" this morning with a healthy movement.   I woke up with lots of seepage from the leg and swollen eyes.  Swollen eyes? What from?  All I ate yesterday was Linda's soup, no salt, no grated cheese.  I ate Jenn's yogurt, coolwhip and fresh strawberries and still have some left.  BTW the strawberries have been wonderful, guess we will bring the cooler next Wednesday and buy at least one flat of fresh picked wonderful strawberries. My appointment is not til 3 in the afternoon, of couse we will go and return the same day.  Wonder if I should work Monday, I think Ill be up to it, but I look so awful.  Jesse is capable of teaching the classes, I think Ill take one more week off.  Til the bandages are changed.  God, I think the bandages are hiding lots of ugly stuff.  So the plan right now is to play bridge, heal and run the club.  I will take it one day at a time and plan for the clubs future without me.  I need to make a will too.  My sister Linda is hopeful I can control AS with diet.  I dont know, mom wants me to take shark cartiledge and I will.  Jenn purchased "50 Shades of Grey" and "Life of PI"  guess which one I am reading first.  :) 
I feel fine, hope this bandage on my leg works today.  I have told people, no bodily fluids should be released during the bridge games at the tables.  Now I might be doing just that.  :)
Jenn was here for 10 days,  Was Great to have her here. 
Paul has been my rock.  Thank God for Paul. 

Not good news, no clean edges, very tiny but still there.  He cut a tiny bit more all the way around and then took the skin from my thigh to make the patch.  Pain killers and stool softeners for this week.  He said I have to go back next week, no one can unwrap me over here?! Anyway another trip to Tampa next Wednesday.  I asked him about watching for more red spots and he said yes.  Radiation probably in about 6 weeks. Probably last chance, he was not hopeful.  I will write more when I get this figured out. I am home.  I will probably play bridge with mom at the end of the week.

Hanging out at home,  Jennifer is still here, she put in over 10,000 steps yesterday and Sandy went with her. Plus she has a "push up plank" callenge group in FB. I am not in pain, but I do have stomach jitters.  Probably caffeine with no action.  Kinda bored, I should be playing bridge online.  I should be working on my taxes.  Instead I am reading stories about AS.  I should be at the bridge club but I dont think I could go for 3 hours.  Not yet.
I'll write when I know more.

We woke at 2 AM, left at 3AM and had the roads to ourselves.  Got to Moffitt 7 AM.  Paul and Jennifer, my daughter, are with me.  Dr. Gonzalez came in,  I said "No one could shave my head, I tried and just got off this area, so that is as far as you can go." He smiled and then he had to finish the shaving in the operating room but he left me with the rest, such as it is.  I dont think this hair is the new growth, I am patiently waiting, but there is radiation in my future if he thinks its necessary that will affect my hair again.  Well the hair is the least of my worries, the prayers now are for complete removal of AS from my body and skin and no future tumors.  That would be a miracle.  They used the port to take blood and put in the meds, yeah. I was out of surgery by 10 AM, Jenn helped me get dressed and they they wheeled me into the back seat and my pillow and we had an excellent fast ride back home.  Woke up once and asked for the pain killer (we picked them up before we  left, Publix has a pharmacy inside the cancer center) ate some crackers and went back to sleep. Before I left Doc asked me if I could lift my brow...I could not.  And now if I try it hurts like hell, like really sharp pain, so I dont do that. He took a large area, he took the new sore spot on my left temple, he put cadavor skin in the empty space and wrapped and taped.  He will remove the dressing next Tuesday when I go for the 2nd surgery, replace the cadavor skin with skin from my thigh.  He gave himself a week to analyize the edges of the removed patch and see if they are clean of disease. If so they will do the resection.  If not, they will cut some more and then do the resection.  When Dr. Gonzalez came out of surgery to talk to Paul and Jenn he commented on how AS keeps him up at night and is frustrating since there is no cure and no guarantees.  fuas
I plan on staying home to recouperate,  I plan on continuing the Noxy4 and Immunofin to fight this shit disease from the inside.  I will take vitamin C to help with the healing.
There were so many of you in clurch while i was there.  Thanks to all for your prayers. I have been reading your messages and re reading your get well cards from months ago.  Love all around and your help with the desire to fight.

Big Boo Boo #1.