Wednesday, November 20, 2019

6 weeks later,  no treatments.  Very into nutrition and now on plant based foods.  It is not easy!! I am fighting, I am in charge, I am researching and most importantly I am basking in love and recommendations from friends and family who are seriously involved in my path.  God is my main stay calm beacon.
Insistent, persistent, texts.  .coms to look up and research, tapes to watch, you tube, podcasts, books to read and recipes to find:
My sisters think I should go to this counseling place, give my blood and have a CBD oil program just made for me.  They say it works, people are being healed!
I don't believe it.
or this one supported by many is that I should contact Sylvester - John Trent - who seems to have success with AS f/s patients who got it from the sun.  Now with all I know about angio, you do not get it from the sun!! mine is not from the sun.  I found out his treatment involves mega doses of antibiotics.  I do not get along with antibiotics.  Strike two.
What do I believe in?  The power of God, my power to trust this path I have chosen.
Also a brand new warrior in my war is my husbands ex.  Yes, Cassie and Shannon and Ben's mom.  She more than supports my path, she has warned me about those who will try to scare me into treatments.  And sure enough, when I went to my primary for pain pills (if I need them) he got into my face and said "You are in denial, have you contacted hospice?, You are going to DIE, you will never cure yourself with diet, It will KILL you, go to Univ. of Miami now."
Done for now.  This is my diary I choose to share so I can continue to grow. I love you, thank you for your prayers.
And I have lost some weight!

Friday, October 25, 2019

I have decided to take control of this situation.  I will starve the nasty cancer tumor and blast it with high nutrients and even lava ash!!  Started on Sunday after the devastating news that AS is back in my neck and jaw.  And they have mis-dx this sucker for 1 1/2 years!  Phoey and shame on them.
Meanwhile I was gifted a book "Cancer free with Food" and I am optimistic about this path.  Dr. Medina advised chemo, surgery, reconstruction and rads.  I said no no and no and thanks for your time.  As of today almost 2 weeks without sugar, gluten or alcohol.  Pray for me.  I told Paul, remember when I first got a computer virus and I was frozen and had to purchase another and start over.  when it happened again, I got out the original discs that come with a desktop and rebuilt the damn thing myself.  As a result, I am not as afraid of the viruses as I used to be.  Now that AS has returned I am calm and determined.

Hi, In January 2018 I went to Dr. Arena (primary) because I feel a lump in my left side neck.  He didn't feel it.  I went to Dr. Deture (a periodontist) who filmed an "amoeba" dancing around on the xray he took.  However, he didn't address the lump in my neck but said "it is not cancer".   So I went to Dr. Lapco (expert ENT), he did a biopsy and said it was yeast!  He prescribed antifungal rinse - twice - but to no avail.  Deture told me to use bleach in my waterpik.  OY!!  I went back to Arena who said lapco and deture were crooks so I found Dr. Kufperman who sent me to DPI for a scan.  I came back - not cancer.  Meanwhile since the lump was moving and changing, they finally referred me to Cleveland Clinic - an expert ENT there, Dr. Medina.  This was July - and I could not get an appointment with him til Sept. 27th!!  WTF!!  As Dr. Medina was examining me and posting my history of AS he started saying well your lump reacts like AS (he has seen it before).   The lump now is in my lower left jaw and in my throat.  Well I zoned out.  I told him I will not fight AS again.  He ordered an MRI and Pet from Cleveland Clinic since he does not trust DPI.  Today is the day.  I am fasting.
Look, I don't think it is cancer, I don't think it is AS.
I use this blog as a diary of these stupid rare problems.  I will try to post the picture of me as the Godfather (big jowl).
Big plus from AS group:  The request for scans cited a malignant mass.  I posted WHY malignant?? and one of our members responded that it had to be that way so both scans would be covered by my insurance.  Well - Thank YOU!!
And since it is Yom Kippur I have asked everyone to please say my name today. I love you all, I thank you for your prayers - more than you know.

Test

Hi to and myself.  I enjoy keeping a diary and I don't mind if you read it.  So here is my latest picture.

I don't think it will ever get any better than this.  I grease up the graft with aquaphor about 3 times a day.  Red, white and blue buff for my head today.  Happy Memorial Day.  

It's been a while since I have posted.  Since that time we have lost a few more of our AS warriors to this horrible cancer.  Personally, I am feeling very good.  My forehead is mostly as good as it's going to get.  I have about 30 buffs to use with my wardrobe which had to change since my bridge shirts had the pompano logo. 
I am walking and working at Deans and teaching and preparing for January classes and doing jigsaw puzzles.  Eating healthy meals,  drinking and eating dark chocolate pieces.  The weight stays on.  Aches and pains are being explained away with arthritis and being overweight.  Bumps and bruises are watched closely.  Lately I have grown a couple small skin tags and one mole-like bump under my chin on the right side that I am watching. 
The only doctors I see are the derm doc and the dentist.  Paul on the other hand is suffering, AGAIN and STILL, with the sinus/congestion problem that saps his strength and makes it very hard to sleep. 
I have used this site to thank all of you who care and helped me through a very dark time.  I fought for those who told me to fight.  I was led in the proper direction probably by the grace of God.  I came out on the other side. I am grateful, hopeful and blessed.   I use this site as a diary, a record of this amazing, unstoppable, incurable, fucking cancer.

Big time changes,  I resigned from the Pompano bridge club on Thursday 7/17 due to personality conflicts and disrespect from the people now in charge.  The reason is health issues and sure enough I got this terrible rash and now swelling around my left eye.  Doctors in my life again.  A summer free and freedom from the God awful responsibility of running a full time bridge club.  No longer am I in charge of trying to keep Paul out of trouble from the people who just dont understand him. I will run seasonal games and teach classes at the Royal Palm Y&CC and The Hillsboro Club.  For this work I am extremely grateful!  Also looks like I will working with Dean at his club in Boca. 

Here is a picture of my nasty angry head. 

This reaction was probably caused by switching to J & J no more tears head to toe baby wash.  I was told this product has an extremely toxic formula and is banned in Europe!!  Luckily I have a soft cap with a brim, given to me by a friend, that I can wear.  

Time for the next chapter of my life.  After 5 years at the club I can say I accomplished my goals.  I more than doubled the membership,  I built the bank account, I filled the seats and I made lots and lots of new friends.  Time to "Let it go!!"

Love and Kisses and Thanks.

Hi, long time since I have posted since nothing remarkable has happened my life.  June is here and I am still living my life in good health for a 65+ year old who survived cancer (and its treatments!).  I have been poweer walking, about 2 miles with the dogs to curves music (140bpm) its a fun pace and I pretend I am dancing.  Funny thing, my face sweats from the eyebrows down, no sweat on my forehead - either side.  Weird!  Instead my graft is peeling, very very slowly.  Flaking no matter how much I keep it oiled, it is flaky.   A year ago Henry in radiation told me the graft would peel.  Geesh....
Paul is still fighting his awful congestion and polyps up his nose and no sense of smell.  Ugh....2 1/2 years later. 
I saw my nurse/friend, Lil.  She asked about my follow up.  I told her I was not sick so there is no follow up.  She was appalled.  I am capable of being stupid, but I choose not to do this again. 
My mom is in constant pain, at 85 with no relief in site for her sacroiliac area.  Getting old is still no fun.   
Love my friends, family and bridge players.  God Bless.

My shin is finally getting better, my upper left arm still has a little red mark, but looks better and oh....SCANS ARE CLEAR!!  Still NED and plan to stay that way.  2/7/14 was a wonderful day.  Thank you God, Thank you friends for your prayers.

I have not written because I am very busy,  the minute I slow down my eyes close and I have to sleep.  It is 7:30 Saturday night,  Paul is shrimping with the kids.  He has been congested and weak again.  Its pretty awful, today they did a CT on him!
3 weeks ago I was chasing Mona in the back yard, tripped over a pipe and ripped the skin back on my lower shin, right leg where the old lady red mark is.  Ugh... I threw myself in the shower til it stopped bleeding.  I also acquired a red mark on my left upper arm which must have been a spider bite.  After 3 weeks it seems better but it sure is hard to grow skin - I think I have said that before many times.  I still have the small red mark on my arm.  I used drawing salve on it. Go away!!
I called to request a CT,  the onc wants chest, abdomen and pelvis with contrast.  I have to be injected and drink the liquid for this scan.  I said "no head" they said no, the superficial tumors do not light up (my AS never showed on any scans!)
February already.  January was a blur.  Working at Royal Palm Yacht and CC, also at Hillsboro Club (next to the lighthouse) during the season.  What a treat, lovely people and lovely locations.  Still love the Pompano Club and work there everyday.  God has blessed me with a busy schedule and people who appreciate me.  That and the love of my family is heaven.

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.