Get LA to CA (but first chemo)

In 2015 I was diagnosed with a very tiny little brain tumor, and was advised that it was no big deal. Well.....I wish I wouldn't have listened then.  Turns out, it was a pretty big deal, and an ordeal that followed, at that.  

after a lot of searching, questions, and research, I was able to finally find a surgeon in 2017 in Tampa to hopefully remove the tumor, as we found out not only was it growing, but it was growing so fast they were all blown away.  Neuromas dont usually grow very fast, and often times they'll stop growing and start again, or stop all together.  Well, as it turns out, I am as usual, never in the normal category when I get sick.  Its like my body has this whole "oh yeah, watch this" thing going on, and I am just here in the background for the ride.  My tumor has almost reached 3cm (that doesn't sound big, but it's in my brain, there's no room!)recently growing almost a whole cm in 6 months between my last scans, that means it has increased growth rate even more.  We have no idea why.  It is now in my cerebellum compressing my brain stem, facial, hearing and balance nerves.  I am going deaf, in constant pain, can't taste, smell, and my eye won't tear most times, and I am always dizzy and falling over.  This is just the beginning.  I will be left permanently deaf in the left side following treatment.  Hearing aids are a whole other expense I dont even want to think about right now, I wish I had them now, trust me.  

Surgery in Tampa almost killed me.  There were a lot of problematic things about the operation and how it was handled, but also as usual my body has to be the outlier.  I suffered a subdural brain bleed following a seizure/TIA and they had to stop the operation.  It took them days to stabilize me in the ICU.  I wasn't happy when I was lucid enough to find out I still had this thing in my head and they never even got close to removing it.  I would later discover the fun that is trigeminal neuralgia.  I spent most of the rest of the year in and out of the hospital with a csf leak and a whole slew of other really exciting issues.  My mental health taking the biggest hit.

If it wasn't apparent already, you can probably tell I am pretty over this whole ordeal.  It has taken over 5 years of my life, I am starting to forget who I was before the day I found out I had this thing in my head.  I moved to louisiana in the beginning of 2018, and since then I have not been able to find anyone in multiple states willing to go back in and do something, and as you may have guessed, it has continued to grow and a pretty exceptional rate.  I later caved to the idea of radiation and found myself in the same situation that everyone was too scared thanks to Ehlers Danlos, and my other surgical histories and the risks that are associated (aneurysms especially).  Radiation could do nothing, make matters worse, or cause future issues such as cancers and make the tumor sticky and harder to remove if it came down to that option.  I have been repeatedly advised this was probably the worst option in my case, especially at my age regardless of the outcome during the last surgery.

I am aware of the risks, I would be lying if I said I wasn't scared.  I am so f***ing scared.  I dont even have words for the fear I have right now.  I COULD DIE.  I know this.  I have bleeding issues and even now, I have blood clots in my arm, and open wounds(yes still) from a hysterectomy in November.  But what is worse I have to ask myself......dying slowly from a tumor growing in my brain and slowly suffocating to death as my organs fail one by one and I become a vegetable leaving my family with a very difficult choice......  No.  F*** that.  I'd rather die on the OR table knowing I tried to fix this mess.  You all think I am strong, I can promise you, I am barely pushing through this.  Most days it takes every part of me to not just lay down on the floor and cry, and just give up.

This last dr I saw here in Lafayette then informed me that I was terminal, due to the nature of my growth rate, and medical history and what he referred to as "the greater good".  Obviously I am oversimplifying this situation, but it was the last thing I wanted to actually hear.  He told me as well, I am pretty much out of options and time and if I am going to do something, I need to do it now.  He recommended that I reach out to some of the larger more niche specialty places and I only know of a couple myself that I would even have a shot at accepting my case.  

I got myself on the phone that day when I got home.  I was still in shock and freaked out, but I started calling and inquiring where I should go.  The constant consensus was that Dr. Friedman over at UCSD was the cowboy I would need to get me out of this rodeo nightmare of a situation.  So, I called.....and waited.  Finally, HE called ME.  Awesome.  I gave him the rundown and he kinda laughed and just said "lets do this, I can do this, I know I can do this, you just need to get here ASAP".  So here we are.  I have talked with his coordinator and she informed me he is available March 31st of this year to get this done.  I will have to spend about 2 weeks minimum in San Diego.  We cannot fly, so I have to coordinate the effort to fix, buy, or rent a vehicle to get us there(the train is crazy expensive, I already looked).  Our car was involved in a small accident over summer and has since just developed multiple issues, and made it very inconvenient for us to get me to all of my appointments and therapies, and I will need even more following surgery.  

So here we are.  We need help.  I dont ask this lightly, and I am sure that number at the top of this seems really crazy, it is.  I have an insurance deductible of 8100$(that's only if its in network, we dont know yet, if not its actually 10k) left to meet out of pocket that I will owe for this surgery.   No, medicaid won't cover this, they honestly frankly suck quite a bit and wouldn't even cover an MRI as they didnt see it medically necessary(what??). I dont know if or when I would be able to return to work as I have been out since the end of last year.  I cant seem to get approved by disability for some reason, despite the fact my health as a whole has been diminishing since surgery in 2017.  I am not giving up on them though.  But, in the meantime, I have to ask for as much help as possible.  We have to cover food, lodging, transportation, and lord knows what else to make this happen asap.  This isn't even taking in consideration for insurance payments monthly, hearing aids, etc., but anything raised at this point is a blessing.  I have a month to come up  with this money, and let me tell you, that will go by fast.  I cant even describe the level of stress I am under at this moment.  I am already treading a fine line mentally after the last traumatic experience I had with surgery, and the idea of walking in to another OR scared to death, unable to breathe or calm down.....Scared I wont wake up again and never get to say goodbye.  But it is a greater fear to suffer.  This is my last bit I have left in me to keep pushing through all of this.  I feel like I made the wrong choice once, and maybe I am again.  But I cant do nothing.  Nothing is far worse.  

With all that said....Come march 31st, 2020, I will hopefully be rolling in the the OR at UCSD under the care of Dr. Friedman and his staff.  I hope for the best possible outcome.  If I have learned one thing this last 5 years, its ok to be scared, it is NOT ok to give up.  I may not be so good at saying things, but just know, all the help, and effort and time that all of you have given me through the years has meant so much to me.  I am often so depressed and feel so lost and hopeless I cant always express that in words.  But please know, It means more than any word I could ever find.  

If you dont want to just donate, I totally understand, I have been working so tirelessly with what energy I have left to set up an online store with all of my things.  I am still working at it, and will continue to do so.  So if you would like to buy something instead, it brings me so much happiness right now to send packages out to people.  Please check my shop, and keep checking periodically as I will be adding stuff till we leave in march so I can maintain income and pay my insurance and bills during my recovery.  I have a long recovery ahead if this surgery doesn't kill me.  I hope you all will stick with me through this whole nightmare, and I can come out the other side of this and move forward again.  

Thank you all for at the very least reading this long, long, very very long crazy, but surprisingly abridged version of this mess I have been living in for the last 5 years.  I know I have become a crazy person, or maybe I always was, but just know I am just scared every day I wake up for what the day will bring me.  Wondering you you're going to make it to your next birthday, or christmas isn't a place any of us what to be especially at 34 years old.  I love you all <3

Please visit my site if you'd like to make a purchase instead!
www.slaughteredpumpkin.com


Updates:

*UCSD called to change my appointment by a week to April 7th, due to the Mardi-Gras holiday here in Louisiana.  here it is a work holiday and I cannot make the necessary appointments to get pre screening done for the operation.  

*I have added a discount code for any of you going to my page at www.slaughteredpumpkin.com if you put in the code ANAWARENESS at the checkout, it will give you a 15% off your order as a thanks for sharing!  Its one way I could think of to give back to you all for giving me so much <3