BAD News...

I went in for surgery today for the numerous masses in my neck, face, and head. Upon additional examinations my condition is considered to severe and dangerous to conduct an operation at this point in time. While I may eventually have this surgery my condition continues to worsen and make any operations impossible due to the other issues with my health. If surgery was going to proceed today I would have been left completely paralyzed in my face and possibly entire left side of my body since my tumors are so deep and run along my jugular veins and main nerves and muscles to the head, neck and face. There was also the risk of hearing loss and body paralysis.

At this point I need to visit an additional batch of specialists in immunology, rheumatologist, hematologist, infectious disease, and an additional oncologist as well as head and neck illnesses since it is likely I have numerous conditions making my diagnosis very hard to make and to treat.

Obviously this is not good news and while I am feeling some despair today I am trying to keep a positive attitude as I continue the fight to resume a full and healthy life. I appreciate all the prayers, positive wishes and finger crossing everyone has provided me through this long and arduous battle. I hope you will continue your support as it helps me maintain a positive attitude and strength.

Over the next couple of days I will be regrouping emotionally and mentally as I prepare for a number of doctors visits and a search for doctors in the above categories who will take me on as a patient, I have been declined as a patient recently due to my complicated illness. If anyone has any connections or knowledge of a physician in the country who will take a patient with such difficulties and limited insurance and funds please email me their names and contact information privately at sweetfightgirl@optonline.net.

The funny part is I have kept my youthful looks as while at dinner tonight I ordered a glass of wine to alleviate some stress -- The waitress thought that I was too young to have a glass of wine and next week I will be celebrating my 34^th birthday, my fifth since my illness began.

Anyway, my best to you all as I will be taking a couple of days off from my blog. Again, thanks for any help you can provide.

A few hours to go...

Keep the good thoughts and wishes and prayers coming...I will post once I am well enough and have news...or at least let you know I made it through surgery ok...it starts at 10 am for prep and 12:30 for surgery....Hopefully ic an come home in a day or two!

Till then my friends...

Two Days Till Surgery...

It's been over a month now since I knew I was going to have surgery and three weeks since it got moved which has left me with too much time to think about the consequences. Honestly I never usually get this nervous but right now I am sick with fear. I keep thinking what will happen if my face turns out paralyzed or I have cancer or if my brain tumor grows even more and surgery has to happen soon for that one...

I have tried to prepare for the worst but now they have given me too long to sit and think about it. I like to know the worst so when I wake up I won't be stunned if it happens but then it also makes me think too much since I was given too much notice of when this would happen and then it was moved. Moving a surgery is so not fair to a patient and it just makes the preparation mentally and emotionally hard for the next date you are scheduled for later.

At night I have nightmares about the possibilities of paralysis, losing my teeth or an eye and having to live with a big drain sticking out my neck forever and obviously some worse ones that I don't want to think about now. Then I worry about losing people around me because the surgery makes me more dependent on them or they are grossed out by my appearance. I can't afford to lose much more. And yes I am staying positive but the length of this has made me lose it more frequently than normal...I just can't get it out of my head - literally. :-) I try to stay upbeat but sometimes I feel like I can't breathe thinking about it all.

I woke up this morning and felt a bit sick. I have a fever and a sore throat as well as some vomiting and if it does not leave by tomorrow I will not be having surgery. I am not sure if it is a real sickness or one of stress. But for now I will just rest the first half of the day and drink fluids. Hopefully I feel better later and can do the errands I need to before I go into the hospital. With my parents coming tomorrow I am not sure if I will have time or the energy. I would also like to have a nice meal that I don't have to cook for my dinner since I will not know when I can have solid food again. Most likely not until a week or more has passed.

Well, I am going back to rest and do some breathing exercises and meditation for a positive outcome...talk to you all in a bit. I am sure I will be back before surgery and I will try to post as soon as I can after, not sure when but it may be a couple of days.

Fingers crossed...

Surgery Moved...

Hello all,

My surgery has been moved to the 30th of this month and I am not very happy about it other than after speaking with another doc from Memorial Sloan Kettering I am on the right track and he will be happy to review my pathology reports post-op and take me on as a patient. He too is worried about the rapid growth of lymph nodes and he agreed that one side should be done at a time so as not to scar a person of my age. The cut is quite large and will be noticeable but both sides would be very visible and I would suffer more complications due to my previous history. I now have several connections with docs all over the country so I hope one of them finds a solution.

I am also trying to get Long-term Disability from my old job. Apparently laws have changed and I may now be eligible for all the past due amounts which my company, that fired me because of the length of illness, owes me. if I recall this means at least 1 year and 3 months of some amount of pay. Please hope this happens since I am down to the last pennies every time I get a Social Security Disability check and now Medicare payments. It sucks to be this young and have lost you life savings and not know when you will be able to return to work and regain some value. Not to mention it is hard enough to battle the disease alone but to also take on doctors who are over billing and the collection agencies who I have to set up payment plans with. If only some sort of fund raiser could be had to help me pay the bills and I can at least have a few months of peace with regards to money. It is tiring to battle the bills and live only on Medicare and SSDI. I'm not old enough to be doing any of this. Anyway, here is part of a letter I started to a friend today and then decided to post here instead since more of you would read it.

Hey,

I never know how everyone from town still knows everyone’s business. LOL. I don’t usually see or talk to anyone anymore from up there beside a couple of close friends. Then when I have been home the past couple of years I have been too tired or too sick to go out and socialize. Having been so sick for the past couple of years has calmed me a bit – imagine that but I can still talk faster than anyone I know when my face isn’t blown up like a balloon. Most days I am super strong Dulcie…see the TLC picture, from when I did a show on my disease. I hate being in front of the camera but I wanted my man to have a nice pic of his girl. He met me a month before my first surgery and became my DNR (do not resuscitate) person since I knew he would NOT keep me plugged in forever. But now I have a few foundations asking me to be the spokesperson because I am so damn tough. I am but I kinda get sick of having that title, doesn’t let me break down much. I have a lot of angry days because I know more than my docs and then I have usually one or two days a month where I allow myself to be sick and cry if I want too. I really did punch the glass in the picture though and it was an amazing moment and I broke into tears as soon as it was over – they all thought I was hurt or something since I had yelled at the crew to wrap it up since I was really sick then. Always the boss, at least since I left town and got amazing jobs and traveled all over the world, I realized I didn’t have to be a puppet for people to like me.

Today is a sad day, no clue why, probably my upcoming surgery that will leave me with a big scar on my face. I am too damn young to do all of this, multiple tumors in my head, likely a blood cancer of sort or something equally as bad and lymph nodes all way bigger than they should be, oh and of course the tumor that was in my lung and spine area. At this point it isn’t a vanity thing. It’s I don’t want another reminder, another scar that people will see and say you poor lady (yes, a lady) what happened to you? PUKE! People here are rude and I hate the state I live in as most of my friends have moved away and those left here ignore me unless I send out a mass email announcing another surgery, no one wants to offer any help - dinner, a movie, or just a visit. But, I don’t know where to go once I get better and even though the odds seem very much stacked against me. I am way too stubborn to let some disease win. I have a lot of things left to do, like finish my book which I actually have publishers interested in, and have a wonderful life with a man who really loves me no matter what…he even lets me scream when this gets to be too much and doesn’t try to tell me how to feel. Probably why it’s so easy, no one to tell me how to be anymore and no need to rebel against what other think I should be like and some weird image that was created of me both in and out of school and at my work in NYC and around the world. No one understands that I am sick now when they call since I try to hide it again. I really hate trying to hide it but I also hate pity yet I need and want some help from someone! .

..not finished but I thought I would share it with whoever is reading this...one more day where no help came or a friendly call...why do people think I want to be thrown away like a used tissue? Don't people realize we may all come to this point and need friends and family? Oh well I feel like I have talked about this till I am blue in the face...and still no one changes or tries to do the right thing...I don't have leprosy!

Another Surgery Another Day...

I went to the pain management doc on Friday and he was his usual friendly-self, telling me I was his favorite patient despite my constant a pain and obstacles. I have to call him this morning and tell him about surgery next Monday so he can alter my pain meds appropriately.

So, then I went upstairs to the ENT/surgeon/partial oncologist to discuss the enlarging balloon or pumpkin face, whichever you like more. He was kinda dismissive and concerned but unsure what to do and said because of the welling he could not find anything but the major masses. He said to then come back when it goes down and I was kind enough to let him know that it is no longer shrinking it is only growing with each day. He is concerned to open me up because of all my pre-existing conditions and at my age he does not want to leave me with a full facial cut on the side. I just want answers and to get rid of this.

Finally he agreed to speak with a specialist at Mt. Sinai hospital in NYC who specializes in facial diseases and is a leader in developing new techniques. He created a new so my cut the scar will be an inch or two shorter but deeper - about 4 cm deep or more. Is my cheek area that big? I will have one side done and a the other at another time. Great a lop-sided face for a month or so! Once I get home it will be liquids for the first few days to couple of weeks and then soft foods and at the fourth week it will be regular food, hopefully. But hey, I need to lose a few pounds!

Hopefully postings will be up and maybe a pic of the nice cut. Not that I am vain or anything but I just don't want it, I am too young to be going through all of this!

Oh, and I woke up this morning to find two masses coming through the back of my throat, no wonder I am having a hard time speaking. Nice red lumps right next to each other and I guess I should tell him about those as well so he can pop them out while he is at it. Wait, did I mention the drain that will come out the back of my ear that need to be emptied twice a day until it reaches a certain number. This all pending I can come home and won't need a suction tube attached. The incision will be cleaned several times a day to prevent infection as well as antibiotics. This will be my seventh month in a row. Delightful!

So Monday, November 19th is my next date with the scalpel! Looking forward to it - NOT! Okay, I am having a hard time writing anything about this since fear seems to be overcoming me. One would think after this many surgeries and tests that this would be easy. But honestly I don't want a big scar on my face. not for vanity reasons but I don't need another reason to remember all I have and am going through. That and I hate the judgments and comments people already make about the weight and the limping or pain issues. I really wish people would learn some manners about how to treat a person who is sick - I mean really sick. I don't want pity and I don't want to be the only topic of conversation, just treated as normally as possible and not to have to beg for help when I need it. Oh wait, that would have required having friends that were true and stuck around for the hard parts. I forgive them, but it doesn't make it hurt any less.

Oh well, enough fro this morning, I am tired and sore and have a few calls to make before my surgery.

Toodles!