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!