Brain Tumor Help

Well, here we are again. 
This will be a bit long so bare with me as I want to fully lay out this situation in its entirety and in the most unglamourous honest way possible so I can answer any questions and explain things without having to do so repeatedly as in the past.  Don't let that discourage any of you from reaching out or asking me any questions.  I love hearing from people, it keeps me going. 
 
It is the end of the year and I have one last month of insurance to cover.  I won't lie, it has been hard.  I got so much help with it at the start of the year, towards the middle I was off to a running start and was able to get it covered each month through many different means but here we are at the end and not only am I exhausted but I am out of ideas, resources and things to sell. 

Pretty unglamourous really.  I am not even sure how, if etc., I will have insurance next year.  I am working with a wonderful lady who is trying to help me organize all of this however.  I just put an arbitrary goal for this up as of now I need the usual 518$, yes I know it is Christmas and everyone is tight, I am not asking for much because as always anything helps.  I have started a job and it pays only 7.25$ wrapping gifts for the holiday a couple days a week.  It will help so long as I can actually handle the job.  Seems so simple to just sit and wrap but for me there are a lot of challenges that continue to grow.  One thing I am concerned about is that the wrapping station is located on the second floor and I have to go up and down a lot of steps many times a day.  If you have been around me or lived with me in recent years you'd know what a challenge this has become for me.  I have also seemingly become a bit of an agoraphobic ( I may be underplaying this issue a bit) and I have had a very hard time just going to the store on the corner most days without feeling sick.  This is all trauma related to my time in Florida, partially related to the failed brain surgery last year. 

I want to be transparent here so this is hard to admit these things.  I am suffering not just physically but it seems all of this is taking a very deep emotional toll on me as well.  

So in an effort to save myself from drowning I am now back in therapy full time, forcing myself to at least attempt this very simple job and I am working with a health advocate to help me navigate a very complicated situation.  I need to be able to afford this care, it is imperative for me to keep going or even attempt to push through whatever mental illness has be by the throat right now.  I cant seem to get anyone at social security to see that I am suffering a great deal and need help so I can get through this.  They do not see me as disabled and are convinced I also can do a simple job.  So here I am attempting to prove this one way or another.  We will see who is right, my therapists, or Soc. Sec.  My therapist thinks this is a horrible idea that will set me further back and I am making a very stupid decision.  But, what choice do I have?  I have to survive.  We all do.  

My payment to insurance is due november 30th for December.  I will likely need more help with therapy and I have several other procedures that will be needed in the next 6 months before the next dreaded round of brain surgery.  This tumor is growing.  Its that simple.  It is touching my vagus nerve and my facial nerve.  I am having more and more symptoms besides just the anxiety and depression I have been plagued with.  A couple weeks ago it was found that I have some pretty nasty esophagitis and GERD that has been tearing up my throat and stomach.  I have had to keep rescheduling my bladder surgery due to this because I often have been sick and throwing up a lot.  They wont do the procedure I need to help with the pain I am in if I am vomiting or in distress because this procedure will be a bit rough.  I have to now wait likely till next year when insurance starts over to even schedule it due to this holiday job.  I am not fully sure what all I need as of now I am still having some tests ran to see what is going on with my abdominal pain and the dr suspects I may need some other procedures to go and see what he can do with all of the scarring in my intestines.  

These things need to be done before my brain surgery to help eliminate some of the other pain I am in.  My Drs believe it will help with the healing process in the long term if I have less issues going on elsewhere.  It makes some sense I suppose.  If you know me, you would also know how absolutely terrified I am of surgery, and Drs.  It's never been a good experience.  

So this brings us to the long term needs....  I was told by the only Dr I can get to see me down here, that yes, the tumor is very much growing.  It is still growing in at double the expected rate and has shown no signs of slowing down.  No one has any clue as to why it is growing so fast, but it is.  That's what has made my situation unique, serious and urgent. 

Dr. White also told me last week that I should not wait, but given my health I have to weigh out what is best.  I am already and have been steadily pushing my luck.  I have already lost my balance nerve in the left side.  That's why this job is a bit tricky being upstairs because everything makes me dizzy, especially high places. 

He has told me that so far he cant seem to get anyone locally to see me as far as the surgery I need goes.  He has also said that given my situation and my other health disorders (such as Ehlers Danlos) that he wouldn't see anyone here  or trust them to operate and is strongly recommending that I travel to Rochester Minnesota to the Mayo Clinic located there for this operation or somewhere similar.  Wherever it is I end up, I know it won't be in this state and I cannot fly due to the tumor blocking my eardrum from being able to depressurize.  Anywhere I go, will be by car.  I dont do very well in cars either.  I am very unsure of what is going to take place in the next 6-8 months, but I know by the end of it I will need to be insurgery or I will lose my facial functions.  Period.  I cant keep waiting it out.  It is very clear this thing has shown no signs of stopping or slowing down and therefore I cannot stop or slow down either.  

I will need help to make this happen.  I cannot nor do I foresee a situation that I will be able to afford travel to Minnesota or anywhere else for that matter.  I am becoming desperate just thinking about it.  I feel sick, scared, alone, and just absolutely terrified to my very core that things will go just as bad if not worse than the last operation and to be so far away from my home and comfort just makes me feel sick and overwhelmed already.  I will need some recovery time before making a day long drive back here as well.  There will be so many unforeseen needs I dont even know where to start.  Thankfully I have some people in my corner that are now helping me to navigate all of this and hopefully figure it all out before I end up paralyzed on top of deaf or worse.  

I have been asked what will happen if I dont do anything.  I will die.  It is that simple.  I know that could be a few years from now.  But its reality. Over time this thing will continue to displace brain tissue putting pressure not only on my nerves that control my heart, and breathing as well as many other functions, but I will probably finally go deaf, be unable to walk... The list goes on.  What will kill me however is the pressure on my head will become so great that I will no longer have adequate CSF flow to my brain, the blood flow will diminish and my body will slowly start to shut down.  It will start to put pressure on my brainstem, know as NPH or normal pressure hydrocephalus which would require surgery to put in a shunt.  This would only offer temporary relief of symptoms as the tumor continues to grow.  Eventually I will not be able to walk or swallow or remember anything, it will be akin to having dementia.  Seizures will become more frequent and Eventually I will basically suffocate to death.    

In the more immediate future and currently, I am going deaf.  Oddly enough I am actually going deaf in both ears.  And more surprisingly I actually am going deaf faster in my good side than the tumor side!  Why?  Well, Ehlers danlos, deafness can be a product of that due to the failure of the tissues in the small parts of the ear.  Yay!  I am also often dizzy and have zero coordination.  I would like to take some ASL classes but they seem to be kinda expensive.  I will likely need them.  Hopefully later rather than sooner.  

So, I obviously do not want this to become an eventuality.  I will be doing every single thing I can do not allow this to be how I go out.  I dont want to die.  I know we all do eventually, but I dont want to yet.  

I am looking in to other treatment centers and options.  I have been asked why I dont just do radiation.  The risks with radiation at my young age are very high and in a lot of cases unknown.  The likelihood I will need surgery would still exist especially if the radiation doesn't work.  WHen you radiate a tumor, it necrotizes. When it does this it become very sticky like hardened glue.  When surgery would be needed it would significantly complicate the process, Surgeons would have a very very difficult time scraping this thing out of my IAC, off my nerve tissues, and out of my skull.  The likelihood of other brain cancers forming after radiation also increases the younger you are.  I wasn't too fond of the rate of occurance post radiation of secondary brain tumors and brain cancers, it's terrifying.  

So I hope this answers a lot of questions and things I have found myself answering from the start.  I wanted to be very open and thorough as well as transparent with this situation.  It is out of the norm and I dont really fall in a good place because of the complications from the last surgery.  Some of you may recall all the time I spent in the hospital this last time and how horrible my recovery was and I didnt even have a full surgery!  I suffered a seizure 4 hours in to my operation and they have only been able to guess its cause.  People dont have seizures during the surgery i was having.  In fact my surgeon had never had one seizure in his 17+ years doing these operations!  Leave it to me to be the outlier.  I suffered from a subdural brain bleed as a result and multiple haematomas as well as trigeminal neuralgia that plagued me for months following the surgery.  I cant say I dont blame every doctor in the area turning me down to even talk to me about this thing.  I am so grateful for finding Dr. White to help me monitor my hearing loss and manage my symptoms as well as help me keep an eye on its growth and advocate for me with other Drs.  

So this is my story, in a nutshell.  It's not pretty and I dont expect it to get prettier.  I am scared.  I am scared of so many "what ifs" and I am scared to keep hearing no.  I haven't quit yet, and I dont plan to!  

I will be updating as needs arise.  I dont know what better way to do this than to do it this way.  I appreciate all of you that have encouraged me to reach out for help.  I also really appreciate all of you that have and continue to help me through this.  I dont feel like I say thanks enough and know even if I forget which sometimes I do, that it wasn't on purpose and that every single bit of support, especially the emotional type means the world to me <3

I love you guys.