Time to report on my feelings.  Through busy times at the club, praying hard for the AS warriors who are fighting for their lives, and trying to keep personal relationships on an even keel, I just have to say Paul is my rock.  He is the strongest person I have ever known and loves me so much that feel safe and free to be myself.  Not everyone likes me, I don't understand it but it's true. 
My health is better than I deserve, thank you God.  I think I have medicare and medigap in place, even a rx plan and a dental plan.  I think I will schedule scans in January or February. 
I keep in touch with the derm doc.  Time to see a dentist. 
I want a new car, I want a new toothbrush (sonicare black), I want a fitbit (I think). But mostly, I want to lose weight and only I can give that to me. 
I have little hairs growing from the incision and back to my hair line, strange,  you can almost count them.  I don't think the graft has hair follicles, whew!
Anyway, rough week. Very emotional, depression not allowed.  Happy Manager, Happy Club.  My goal is to have a happy club.  So onward we go, hopefully learning and becoming better.

I wont see my family at Christmas,  I will be with my bridge family and Paul. Merry Christmas and God Bless You.

 

Well today I went and had my hair cut in a barber shop.  That's where my girl is now so I went.  She cut my hair really short and then shaped the wig.  I am real happy with the way I was treated and that no one stared.  Altho, I don't care if they stare, I dont want to scare anyone.   I am working more,  more people are coming back. Busy busy time.  Love it! We are having drinks and dinner at the club on my birthday - 11/17.  It's my 65 and the SS check is in the bank.  Not only that but I hear Obamacare will be cancelled at the end of the year and they all have to get something else.  My trip through cancer is obviously lined with prayers from all of you. 
Feeling good.  Working.  Power walking. 
Thank you Lord for watching over me. 

A fantastic weekend with family as Kim Church (my niece) became Kim Wood.  Danced all night at her wedding.  It feels amazing to be able to sweat and breathe without losing strength. 
Big pain on my right side.  Comes about 5 AM and lasts til I get moving and visit the bathroom about 4 times.  Kinda bad today so I took a pain killer. 
Bumped my head again on an open kitchen cabinet door.  Right on the edge of the graft (on the good side) so it did not break the skin.  So freaking scary!  But I am ok and still able to wear the wig. 
Tommy and Jennifer and Trixie are here for a week.  Jenn and Tom are in Disney for two days and then they are staying on Hollywood Beach for one night and Friday night we are eating crabs at the house.  Cant wait!
Trixie is 17 years old! She can get up and down, eat and do her business outside.  The dogs even get her to play a bit. 
Love her a lot, here is a pic.

Thanks for keeping me in your prayers. 

Here is the previous post:

I am feeling good.  Paul seems to be better.  Mona Lisa is still not housebroken.  So 2 out of 3 is good! 
Scans or no scans.  Paul says no scans, no check ups, it's gone.  I am not that naive but I do trust my immune system to protect me.  I also take homeopathic pills like Noxy4 that enhances NK cells that kill cancer, they are shitake mushroom based.  When I finish them I have shark cartilage pills to take.  Along with Immunofin (shark oil based) and Bogdana (a liquid multi) and curcumin.  I feel I am protected and back to normal without a doctor visit on my calendar.  Angiosarcoma is silent and I should get scans.  Maybe the difference is my age and the way I feel about cancer.  I fought this for all of you and maybe to see if I could.   But I don't want to do it again.  Love you all.

Wow, my last blog just disappeared!  It started like this.  I am better, Paul is better and Mona is still not house broken, but 2 out of 3 is not bad.
Don't remember what else I said, just rambling, talked about me taking my life back, no doctor visits on my calendar.  Probably stupid on my part, but I have Paul sitting next to me saying, "you don't have cancer anymore, you are done, you don't need scans to tell you that."
My support group at the club is wonderful, but beyond that the FB group advises me and supports me no matter what decisions I make. 
My family is so great, maybe I mean vast, but always checking in to see how I am feeling. 
I am taking Noxy 4 and Immunofin by Lane Labs.  and Bogdana and curcumin.  I would love to talk to Dr. Rick (my surgeon) but I don't have any thing specific, just a talk about future worries and how this graft will look down the road.  Funny when you put your life in someone else's hands how attached you get.  (Some of you know.)
Love you all. 

I am walking, drinking shakeology, trying to be good when it comes to food.  I am not losing a lot of weight, but I feel good!  Every time I get a bruise I panic.  But I try to reason my way through it and so far so good.  Putting coconut oil on my head and thigh to fade the scars.  I washed my "hair" last night, easy as pie, I like it, it's growing on me.  Meanwhile my real hair is growing back in, however, as promised, 2 inches all around the graft there is no hair.   As far as I can tell the graft has not "peeled" and still remains darker than the rest of my forehead. 
The wig store called with a $30 coupon on my next wig.   Not interested.
Paul is really sick with a chest congestion that keeps him up at night, saps his strength, kills his sense of smell and worries me.  He has had it since February, along the way he has had nose polyps.  Ugh...
I am scheduled for scans and doc visit 9/9 in Tampa at Moffitt.  I am not going.  If I have the scans it will be here in Ft. Laud. with Dr. Patterson.  But I think I will postpone for as long as they will let me. 
Kim's wedding in October! 
Love you all,  Have a wonderful holiday.  Happy New Year to those who celebrate.  xoxo

It was Herpes Zoster, shingles.  Here for 2 weeks,  pill and cream from the derm doc and today pronounced healed.  Good news.  Onward.  Our 11th Anny tomorrow.  Close friend, Nancy Paris, a former caterer rest. owner, is preparing a Chinese food feast.  We have champagne, we have punch, we have fortune cookies,  we will get cake and we will have a wonderful day.  You are all so wonderful!  God bless you.  Happy Birthday to my terrific daughter, Jennifer. 

The new hair.  Went to the doctor today. I have shingles, back of my left thigh. Oy!  

Stubble!  Finally,  really far back but some extra hair will be welcomed.  Feeling good. Energy, walking, not losing weight!  Mona is still not housebroken.  Peed on the bed, so she has been banned from sleeping with us.  Woke up to pee on the floor and shit on the windowsill,  grrrrrr.......  Will she learn? 

 

Some weddings coming up.  Time to get the wig.

 

Love and Hugs

 

I am a whimp,  I hate needles, I hate pain from a shot, but I tried.  The minute he put the numbing needle in my chest near the port I started screaming.   He thought he was going to shoot me again, but I screamed before he started, so he asked if I had someone I could call to come and get me.  I said yes and he put the sedation in the port, then they pulled it out.   That was Tuesday, I played bridge that afternoon (I was so calm!) they pain started that night.  2 days with pain killers, hopefully it will subside soon.  I am glad it is out.
Almost done.  God love me and keep me cancer free.  Thanks all.

Tuesday 7/16 8:30 AM,  port is coming out.  I am going to take a Xanax since I hate shots.  They assure me it is a simple procedure after they numb me up.   I have been busy, doing my thing which is planning events and special games at the bridge club.  Paul's birthday party Saturday.  I feel good, I have energy.  I still am fat, I still don't have hair.  I bought some more buffs.  They are fun.  Thanks for keeping up with me.  Its been a year since we started, I still appreciate you and your prayers. 

All is well

I saw Dr. Patterson on Wednesday, he said he will order the scans and see me in September and hopefully I can avoid the trip to Tampa.  He gave me the go ahead to get a shingle shot and have the port removed.  From now on, if I see a spot, I will get a biopsy from the derm doc, then if its cancer I go back and see him.  Well, it aint gonna happen, so there!  Now I need to worry about Paul, he has polyps so bad he cant smell, or breathe when he lays down.  If you think he looks tired, you are correct, but its not because of me.  We think it might be the construction here in the hood.  I am trying not to be upset but I am still BALD!  I hate it.  I have always been a "what you see is what you get" kinda girl.  Getting a wig is like a disguise.  awggggg.... Anyway, the bridge club is keeping me busy.  I love it very much and with 3 dogs its best we don't do any traveling. 
I feel good, I can stay awake, I am looking forward to the parties we have planned for Paul's birthday, 7/20 and our anniversary, 8/24.  Both are on a Saturday, you are invited to both. 
Kisses and Love.  Thank you God. 

I saw Dr. Medina today.  He said my head looks great.  When I asked about my hair he said he told me that the hair would die,  well he meant the hair follicles!  The radiated part of my head has dead hair follicles.  I seem to be forced to get a wig.  Boo Hoo!  So my visions of a comb over with a bandanna is not realistic anymore.  I am going to wait but I will eventually go shopping and try some on. 
Next step is to see. Dr. Patterson and get this port taken out.  Also want him to contact Moffitt and see if I can do the follow ups here.  I say YES!

I feel good, Jennifer is here,  that is soooo nice.  Been busy. I have sent an email to a nutritionist.  I am serious on no animal, fish or fowl. 
Love you all.  Thanks for caring!

NED

No cancer,  NED.  Clean scans.  Now Moffitt Center,  CT scans and a visit with the doctor every three months for 2 years.  Yippee.

I had a busy week,  besides working everyday, I had a triple on Friday and a double on Saturday.  Last night I fell asleep about 7 PM and slept for 12 hours.  I got to the derm doc yesterday and got a new cream for my leg.  It seems to be working!  YEAH!  Finally (maybe) this will be over and I can start wearing pants again.  Monday we go to the Moffitt Center in Tampa.  After the CT and visit with Dr. Rick we will go see mom in the Villages.  Home on Tuesday and back to work with 3 directors on vacation.   
I want to post some pics.  You see this is my journal and I refer to the time line and the pictures as I progress.  I still dont have hair.  I have not had animal protein in one week!  Fruits and vegis,  hard to figure it all out but I am just sick of being round.  Wish there was a green market closer to our house.  My niece is getting married in October, my nephew in March.  Gotta look decent for the family photos.
My head is good, still not the right color, but I knew it would take some time.  Thanks for keeping up with me.  Loved seeing my friends in the Boca area.  Paul has been wonderful.  Cassie and Tony will take care of the dogs while we are gone.  Thank goodness for them and they live right next door.  Love it.  Waiting for a visit from my daughter.  I love my family. 

 

You can see how burned I got.  Both my brows had blisters! and I lost my hair on my right side temple area too!  Love my survivors buffs.   I hope everyone stays well and happy. 
I assume the cancer is still gone the docs will confirm this coming week.  Praying. 

I am totally emotionally involved in my AS FB group.  As they face their trials and fears, as they go through or watch family suffer with angiosarcoma I suffer right along with them, praying and cursing and realizing how lucky I am.  So far, knock wood, phew,phew.   I have a busy time scheduled before my trip to Tampa (6/10) for CT scans and a visit with Dr. Gonzalez the surgeon.  The group calls it scanxiety.  We will drive over to the Villages after Moffitt to see mom and then home. I am still burned up, sores on my brow, blisters on my leg again.  Skirts.  People handing me catalogues on wigs and fake bangs.   I am working everyday.  I go to bed early every night.  Thanks to my crew at the club and my wonderful husband and all of you.  Kisses. 

Well, here we are after 7 months of chemo, a month of 2 surgeries and time to recover, 6 weeks of radiation and I am done!  10 months later my skin is burnt, my hair is gone, the weight is still on me, but I am finished with treatments so it feels good.  I plan on remaining NED and I want them to remove the port.  I doubt I will do this again.  There will be no more.  I thank God for His plan to keep me alive.  I thank you for praying for a good outcome.  I think we have done it!!  Love you.  FUAS!

3 more days of radiation.  Very happy about that.  Looking forward to having hair again.  I really must make an effort to stay out of the sun.  My leg is acting up again with another blister.  I have added coconut oil to my daily regiment.  Supposed to be really good for the skin.
Tourney time at the club so I am extremely busy right now.  Directors taking days off and events coming up.  It wont slow down til mid June.  People will then leave for graduations and weddings and vacations. 
I want to concentrate on healing.  Thanks for keeping up with me and caring about me.  It makes a difference. 
 

Yes I lost my hair before, but I had a soft white fuzz that remained and even grew, on my head and under my arms.  3 weeks into radiation, my hair fell out and left nothing!  My scalp is mostly w/o hair and soft baby skin 3cm around the graft.  Then beyond that I have hair that is growing and shows when I wear the headbands/buffs.  They are very wide, thank goodness. Its a wide area now and I am just the ugliest I have been so far.  Ugh...
Meanwhile the grafted skin seems to be losing the "football" leather look, near the temple.  It is so soft and smooth.  The rad guy Henry says it will shed. 
Party last night, party today.  Bridge and bridge friends are fun things, its nice when its social.
Leg is still coming along, slowly!  Mercer gave me a bottle of Gold Bond for the itch.
Thanks for caring!  God Bless.

Observations, the hair is not being burned off.  It is falling out in clumps like it did the first time.  But just 3 cm around the graft.  So the extreme pain when I touched my scalp was just like before.  Feels like it is being pulled out by the roots.  Anyway, I had a good cry.  Expected, but still shocking.  Lost my sideburn for now.  I have aloe on the skin now and everyday twice a day.  Hump day, 3 weeks and 2 days left. 
Another observation, do you realize how much your skin moves, how supple and sometimes the harder you rub it the better it feels, well my forehead is something else, literally.  It hurts to yawn, its hurts to sneeze,  both actions make movement in your forehead and this does not move.  (I dont think I want it to move!)  I think I mentioned the muscle over my left eye was cut or damaged so I cannot raise that brow at all. 
Another thing, my appetite for bad food has remained and so has the 25 pounds I gained while on chemo with steriods.  I have no excuse now. Time for some serious change in the way I eat.  Need to get all organic, more raw vegis and fruits and then the weight will drop off and I will be healthier. 
Oh this dog is filled with mischief!  She pees and shits in the house at night when I work 2 sessions.  It usually looks like a hurricane hit the inside of the house.  I need to find a way to hook up a camera, perferably from my computer, and record what happens when we are away. 

I have finished 2 weeks of radiation.  Weekdays 9:15 AM.  4 more weeks.  They are radiating 3 cm around the graft.  My hair is being burned off I assume.  My skin is sore and red where there is no hair.  I just put some more aloe on it.  I have been busy, I have had energy.  I wish the healing process would be quicker.  My leg looks like it did 2 weeks ago.  Groan....what a process.  Pray for a speedy healing for me and my mom.  She is still struggling.  Still growing skin on her upper and lower right arm and now she suffers even more with arthritis.  Luckily my daughter is perfect and works her buns off (literally :)).  Love you all.  Thanks for checking in on me. 

Mona

I am feeling tired,  guess I will need to slow down, take a nap, and I have to hydrate.  My leg is blistered still and painful, nurse says it should be better by now.  Sure wish it was.  Note to self:  NO SUN.
I had an opportunity to direct the bridge game for the Go Pink, Breast Cancer Fund raiser with 23 vendors featured for shopping.  I enjoyed the speaker who of course was talking about diagnosing breast cancer and the new protocols being used and more details that I lost track of,  the point is I am moved by all this money and the generousity of so many to help with cancer research. 
Today I found a tweet from a follower from December 2012 about angiosarcoma and research papers I should read.  I wonder why I found it today.....
Yes, I use twitter as well as facebook.  I just love being socialable.  Love and Kisses.

3rd Day of Radiation (RT).  The concert was the Eagles. We left there and got a new dog.  I am thrilled with her, Mona Lisa is 1 year old, 9 # shitshu/terrier mix.  Very cute and gets along with the boys.  Tired,  no bridge today so I will take a nap.  Here are some pics:  The area that gets radiated is the cushy part around the graft.  I apply aloe vera to the area twice a day.

She is very cuddly too. 

Hi there,  2nd Overall in the Bridge Tourney with Doug Nelson!  12 Gold points.  Sweet.  We are playing again tomorrow.  I got a call from RT (radiation treatment).  We will start Monday once a day, 9:15 AM.  Good news.   

My leg is still driving me crazy with itch as this new skin is still finishing.  Well Henri from radiation called 1:30 today and I had to cancel my 2 PM class to get fitted for my mask.  I went like a good girl intending to start tuesday morning.  Then I get a call, delayed til Thursday!  I said no, delayed til Monday morning.  I am going to the tournament.  What could they say.....I need to keep working, the bills are coming in.  The trust is depleted. I have $6000 out of pocket per year with my insurance.  I should be ok if there are no surprizes.   Love to all.

Hi There, today was one of those days where nothing went right.  24 hands, most of which were painful.  We failed to anything that was right.  The best we were was average.  I was not a happy partner and probably made my partner very unhappy.  I am sorry and my stomach hurts.  When it comes to fight or flight, I am the flight person.  So when I am tied to my chair by the rules and cannot run, get away and start anew a new day, I become really frustrated.  I should have taken a xanax.  The harder I tried the worse it got. Anyway, how do I change,  can I learn from having cancer?  I do what they say and accept the protocol.  Why cant I relax and accept our zeros without preaching.  Yuck, really hate my personality flaw.  I comes from my training in bridge.  I was yelled at and ridiculed as I learned advanced concepts in bridge.  You pass that on, and its really bad.  I whined alot today.  No more whining. 
So I have these really strange twinges on the graph, I feel an itch, I reach up to scratch and it is the graph that has no feeling!  And I cannot find the source of the itch.  Is that weird? 
I wish you all a Happy Easter and Happy Passover.  God bless you and your familys.  Thanks for putting up with me, I am not perfect. 
I think I am healing as fast as possible.  The scabs are almost all gone.  Radiation will start Tuesday 9:15 and 4, six weeks. 

I look drunk, I am.  Cheers. 

Appointment this morning at radiation was a fitting for the mask and they are still not done with the apparatus so radiation is delayed til Tuesday when my appointments will be 9:15 AM and 4 PM 5 days a week for 6 weeks.   No tourney for me til Sunday.  Boo.  I am feeling fine.  Seems like the head is healing just like it should.  The big bills are rolling in.  I will not pay them til I understand them.  Thanks for following me along in the journey.  Its a long process!  Love from me to you. 

Paul and I were invited to seder tonight at John Knox Village by Peggy Golden with her husband, brother and sister in law.  It was lovely, well attended and with lots of participants.  I learned alot, but really felt like I was being talked about.  Delivered from evil is ME.  I am very very grateful.  Radiation starts Thursday.

Working a double today and then Dog Night at the club.  Should be a blast.  We are bringing Sandy.  We are leaving Puffy home,  he cant seem to control his bladder and he has that small dog cough when he cant catch his breath.  Poor thing.  Anyway, I am feeling great. I am seeing the radiologist tomorrow and radiation will probably start the following week.  I will post more info as I get it.  Fun yesterday with family and friends and great food.  The brunch at Galuppis was wonderful and then Linda put together an Irish meal everyone loved!  Thanks for the great times, dinners, desserts, scarfs, hats, money and your prayers.  xoxo

We went to Disney,  way too crowded for my tastes.  We walked Animal Kingdon and Epcot.  Ate in France and stayed in a nice hotel and came home.  Meanwhile the stitches are popping and the scabs are falling off.  I sent this pic to Dr. Rick Gonzalez in Tampa and he asked me if radiation has begun yet.  Apparently he wants me to start right away.  I wanted to wait til 2nd week in April.  Oh well.  I will talk to Dr. Medina and get this going.  Nope, the pics are still too gross.  Maybe in a few weeks.
 

Feeling very weak,  just walked around the block and my feet and my back were hurting.  How in the world are we going to make it around Epcot? I know, I should have these problems all the time!  We leave Wednesday, back on Thursday.  I feel ok in my scarfs but cant wait to take them off end of day.  I am trying to avoid the percocet, but sometimes....
Going to see mom tonight, she is still at the hospital with antibiotic IV.  Poor thing, she is bored to death and eager to get home. 

First day w/o the bandage,  what an experience.  Feel naked, kinda ugly.  But with the scarf it was covered and I was fine.  Today I get it wet, today I wash my hair and my face, not the new stuff, but I am going to get it wet. Scary.  I went to see Dr. Medina, the radiologist, got the dates and they are holding off til after the bridge tourney first week of April so I can go play.  Radiation will begin second week of April for about 8 weeks at high doses.  They will build me a mask that will protect areas that are not to be radiated.
I got some wide brimmed hats from Susan, I will still have to wear a scarf, they will be great for Disney. We go next Wed and Thurs.
My sister Gloria will be in town for St. Pat's day, should be a fun get together.  I will post some pics of me in my scarfs.  Time to get creative. 
I feel fine, still nipping the percocets. 
Have a wonderful day!

I saw Dr. Patterson, oncologist, at Holy Cross this morning,  he declared me "NED" No Evidence of Disease.  The radiation will kill anything that might be lingering beyond the clear edges and then I am good to go.  Sweet words, bright future.  Anxiety about not wearing a bandage, but they insist that i have to let it dry.  Must be a way to cover this raw mess on my forehead.  Only bad thing is that the bills are pouring in.  YUCK.  I see the radiologist tomorrow, Dr. Medina, the best!! I will get a plan and feel like I am finishing.  Thanks for every prayer, for every thought for my future.  xoxo

I am sitting here working at the computer with my bandage off.  I have been spraying with diluted Bogdana and I will rinse with saline water and gauze.  Then bandage with aquaphor and cover for my shower.  My leg is still going through the horrible itchy thing!  I got up, put aloe all over it and took a percocet.  In about 10 minutes the pain and itch went away, the aloe dried and i went back to bed.  I hope that stops soon, I had put aquaphor on my leg earlier. 
I see 2 doctors on Tuesday and Dr. Medina, radiation, early Wednesday morning.  Its a 2 hour visit.  Should Paul come with me?  I will tell him I dont want to start treatment til 2nd week in April.  After the Regional tourney.  Paul and I are going to Disney World, just one night in a hotel and free entries into the parks thanks to Linda and Ken.  So the reservation guy asked if we were celebrating anything on this visit, my response was I am between chemo and radiation after surgery, we are celebrating life. 
His mother went through it too, was cancer free for 20 years, but dead now.  People do understand.  One guy asked "Gee, how does the other guy look?"  I replied "Like a surgeon."  Paul said I should have said, "he wore a mask". 
I am enjoying my new facebook friends posting in the angiosarcoma group.  Lots of prayers there and sharing.  Love to all.

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.

First surgery is scheduled for Tuesday 2/5 11 AM, we have to be in Tampa by 9 AM.  Second surgery Tuesday 2/12 8:45 AM, we have to be there by 6:45 AM.  As Paul says one to take it off, next one to put on the graph.  The resection, the left side of my forehead.  If they take that much I hope they at least get it all.   As the surgeon said, I have to make time for this and it's going to be a rough couple of months.  Thanks for your concern and prayers.  Its show time.

The doctor from Moffitt just called.  The spot is Angio Sarcoma and he will schedule the resection asap.  It will be 2 sessions one week apart.  They will take skin back into my hair so I will no longer have hair or any hope to grow more.  The week inbetween is to see if there is more that needs to go before he put the skin patch on my forehead.  I will be a freak, but maybe he can keep me alive.  SHIT! I was too hopeful.

So I cried through the whole appointment.  Dr. Gonzalez is so wonderful but did not schedule surgery.  He told me when the tumor starts to grow back we will do surgery.  If he operated today he would take the large area down to my brow and into my scalp, so I cried.  Then he said "I'll map it out with 8 biopsies" and drew spots on my forehead, then we decided he would just take one biopsy where there was a red mark - to see if it is sarcoma.  We will get the results in about 4 days.  He said something about 3 months and then asked me to make an appointment and come back to see him in a month.  He was patient with me and with Paul trying to explain the disease.  He told me to watch and call him if it starts to grow back or if I get a lump in my face or neck.  He has seen this travel to the lymph nodes.  And so I cried some more.  But that got in the way of my hearing the tumor is not there, not now.  Paul asked if I could take vitamins and stuff and he said YES.  So now I begin what I have been planning.  I will take a regiment of NoxyLane4 and Immunifin.  The first one has a shitake mushroom base and kills free radicals, the second one contains shark oil.  So the plan is to keep the tumor from growing back.  Possible?  I was given no hope of that happening today, but delay it? Maybe yes.  I feel weird.  Thanks for prayers,  I need to ask for more please.

Good Blood work,  and the pet scan is clean.  Here are the words, No obvious FDG avid malignancy in a field extending from head to foot.  So this is good!  Moffit on Monday.  Thanks for your prayers.

Well, very interesting day today and lots and lots of help from my medical teams.  I spoke with the insurance company today.  The woman told me there was no evidence I still had cancer so they would not approve any procedures!  I wanted to call Barack but he was a bit busy today, so I called my angel nurse and told her I must be cured!  She said no, they would call the insurance company and explain that I am in the "middle" of treatment and by no means is the cancer gone.  The doc talked to a doctor that represents the insurance company and finally approved the petscan.  Bloodwork Tuesday 9 AM, petscan Wednesday 9 AM, Doctor visit Wednesday 10:45 AM.   Surgeon at Moffit - Monday 1/28.  All systems on "go".  Headaches everyday now. Praying for continued containment but I know its still there.  Praying for the perfect time for surgery before it grows back and praying for a small area of removal, but it is what it is. God will help.  Thanks to all.  xoxo

Ok, ready for the latest?  We have a prescription from the surgeon at Moffitt for a pet scan.  My insurance company will not authorize payment.  Cash payment is not an option?  Now I have to make calls and find out why and what happens now.  Need to get the petscan scheduled and finished before 1/28.  My initial reaction. "I dont give a shit!"  If I have to get a petscan, you guys make it happen.  Not up to me! I will be at Moffitt on the 28th regardless.  
Please God dont let this thing grow back.  Keep the devil at bay.  I will try to do what I can, be healthy and work hard.  So many need my prayers.  Be assured as I pray for myself I have you on my list.

Blood work on Monday came back great.  I have a pain where my bra goes under my right breast.  Dr. Patterson ordered a chest xray.  I dont know if I have ever had a chest xray before but I will get one Thursday same day as chemo.  The pain feels like a baby kicking you in the ribs, maybe heartburn? I have the pain more on than off, but not constant.  I gave the pain a level 4, meaning I can live with it without drugs, but its painful and want it gone.   Next week I have off.  My mother has been in an accident, she was hit and thrown out of her golf cart.  It was just a matter of time, in the villiages, old people in big cars and lots of golf carts,  what a horrible thing, I feel so bad.  Broken right leg, cuts, bruises and all the skin off her right arm.  Ugh....poor mom.  I need a trip to the Villages to see her. 
Meanwhile this is my onc at HCH, Dr. Stephen Patterson.

I have been busy.  I am teaching twice a day, the hours make it so I can be at the club for lunch and help start the afternoon game.  So today is a triple.  I feel fine,  Some headaches, sore muscles (I dont know from what!) but all in all feeling stronger and waiting to see the surgeon.  Next week busy again and will have to get a full body pet scan along with pre-op blood work.  Apparently Rick Gonzalez is very busy at Moffitt, like til the 2nd week of Feb.  However, I have to get on the surgery schedule and if the tumor grows back I will be put on the table in front of others.  So do I have a date, no, will I have surgery, yes.  I will write more when I know more.
Mom is at Lindas in Weston.  God Bless my sister Gloria that got her here, God Bless my sister Linda that is housing her, and God Bless Ken, Linda's husband who has the knowledge and stomach to care for and dress my mom's deep wounds.  God Bless mom,  help her heal and get strong again.

Since I had chemo on Friday we delayed taking blood til today.  That gives me time to heal and make really good blood, I hope.  So bloodwork at 9 AM, then Doc at 11:30.  Guess I'll go to the club and work on end of year reports in between visits.  There are more than one, they are calculating jobs, W-2, 1099, 941.  I love working with money, on books, balancing things and reporting to the masses.  Anyway, playing with my good friend Cass Paley today,  he comes from Pembroke Pines area so I dont get to see him often.  A fine man and a good catch for some lady.  Working tonight and then Chemo back on Thursday.  Good!  I am going to keep busy til 1/28.  I am fearful, but there is nothing I can do about it at all.  God, I am in your loving hands.  Let my surgeon schedule surgery, cut it all out and be done with this cancer.  You see, mine is not remission, mine is removal and begone.  But angio sarcoma is tumor of the blood vessels and I imagine it could reoccur.  I guess I have weak blood vesssels?  Random, rare, agressive.  This process is taking way too much time, there might be more treatments after surgery, like radiation or more chemo. boo.......
Anyway, you see it just proves that prayer is the only answer,  good attitude, they tell me is important.  Thanks for your prayers.