Childhood Rhabdomyosarcoma, Adult Acoustic Neuroma, Current Meningioma tumor & 3 Dozen Late Effects
"Content removed by CSN Support Team" This explains my nightmare, due to my health from multiple cancers originating first from childhood cancer at the age of 2 my life has been a nightmare. This truly is my last hope or chance, I have lost everything and everyone because of the late effects of my cancer and the treatments and mainly because I am in the first main generation that's faced the true nightmare of late effects of my treatments. I've basically been given the scarlet letter my entire life and seemingly thrown me to the side my entire life and insurance rejects me as a preexisting condition and the supposed government disability has rejected me 8 times in four states plus currently in 9th attempt despite having a ten foot stack of records clearly showing over a dozen qualifying health issues as result of my cancers. I have fought 39 of 41 years of my life to survive no matter what happens and to keep on mainly in hopes of helping bring awareness to pediatric oncology and in hopes everything happens for a reason and my struggle would bring light to these issues so children to come didn't follow in my footsteps. But at this point I don't have the ability to survive like this any further and after years of being rejected and losing everything despite my drive I am not sure how much longer I can push on. I actually was in school finishing up in Radiation Therapy with a 4.0 and national honors with the goal of going into pediatric radiation oncology as a radiation therapist but my severe late effects a year from completion took that from me also. I am willing and wanting to volunteer myself for any and all research if it means something can be learned from me, I don't care at this point what's done to me because I don't believe it's in my cards to survive but my biggest fear is my nightmare life and everything I tried so hard to survive will be for nothing so I will do anything it takes to know even one child can benefit from my hardships. I am even willing
to donate organs and whatever I have that's helpful. I know this is an unorthodox email but this is my last hope so I beg you to please read my story and consider helping me at least provide anything that can help anyone else. It seems my odds of my health improving at this point probably isn't in my reality but I can't stress it enough I can't handle knowing nothing will be learned from this.
I am attaching records and an article about me and posting below my story in full detail explaining my hardships or journey depending how you look at it and I hope you can find it in your hearts to consider but I also will understand if not because till this point I have tried in the US reaching out for 9 plus years sending over 200,000 emails to researchers, foundations, hospitals, doctors, government contacts with almost no contact back. It's cost me
everything and everyone in my life but despite this all I wanted was to find a way to feel better so I could help others fight back or avoid similar paths. I beg you to please consider this and I apologize for writing so much but at this point I am writing this under the guise this is my last chance so I'd rather provide too much than too little…
I battled rhabdomyosarcoma behind my right eye at 2.5 years of age as well as bacterial spinal meningitis. With only 3% chance of survival I beat my 1st cancer battle thanks to a rough trifecta of surgery, chemo, and radiation only to end up facing a dollar bill sized acoustic neuroma brain tumor 25 years later. Which then opened Pandora's box in every horrific way, resulting in approx 22 major medical conditions to battle everyday. Some of the worse current and long established late effects that have crippled following the brain tumor removal in 2010:
Rhabdomyosarcoma Right orbit
Acoustic Neuroma Brain Tumor
newly identified brain tumor: Meningioma Tumor APril 2023
newly identified mass in left lung April 2023
Bacterial Spinal Meningitis
Orbital Neoplasm Left Side
Chronic Orbital Pain (Phantom Limb)
Enucleation Right Eyeball
Total Blindness Right Eye
Severe Chronic Fatigue Syndrome and or Cancer Related Chronic Fatigue Syndrome
Osteo Retrolisthesis of L2 on L3 and L3 on L4
Intervertebral Disc Space Narrowing
Osteoporosis & Osteoarthritis
Low bone density equivalent to adult 70+ years old according to DEXA Scans
Muscle Wasting Disease MWD
Cachexia & Sarcopenia
Hypopituitarism & Adult Growth Hormone Deficiency
Castration Level Testosterone
Vitamin D Deficiency
Vitamin B Deficiency
Partial-thickness Tear Proximal Patellar Tendon
Fractured Right Kneecap
Distal Bicep Tendon Complete Tear
Cutaneous Radiation Syndrome
Pour Wound Healing
Single-sided deafness (SSD) Unilateral Hearing Loss
Unilateral Peripheral Facial Nerve (VII) Palsy Lower Motor Neuron Disease.
Hypoglossal Nerve Paralysis Of The Tongue
These medical issues have cost me everything I have......family, friends, schooling, career and basically the chance of any quality of life. I realize how busy people are and hope I am not bothering you guys by saying so much I am just trying to fully paint the picture for you. This truly has never been just about me because I was trying with every ounce of myself before the issues and throughout to help others and it's the only thing I want to still do if I can regain some or any quality of life. All I want is to defy my struggle to create awareness about my health conditions in order to help change aspects of treatments to prevent future pediatric oncology patients from the horror of walking in my footsteps. So now to be more brutal and open and honest than most would like, please stop and imagine this is you, walk in my shoes to try to understand what everyday is like. Below is me painting the picture of what a normal day in my life is. Please listen and think about what I say as if you personally were going through this:
Truly imagine this, tomorrow you wake up....By the time you open your eyes your right eye or where your eye used to be is already in pain. You try getting up and moving and even though you just slept for 8 hours you feel like you have had the flu for months. You're so tired it feels like someone took a vacuum and sucked everybit of life out of you. The alarm on the phone is going off but it fell off the bed and you can hear it but in frustration you can't find it because you can't locate sounds anymore because of the loss of hearing on one side. How about the fact that your body can't and won't adapt to how thrown off you are with the sudden loss of single side hearing, between the loss of sight and hearing on one side, your jumpy from the most basic everyday situations. I know people can't understand this but I had this thought you might be able to imagine, consider the thought of driving a car that only has a windshield on one side only and it's soundproof so you can't properly hear your surroundings. Imagine how disabling getting around would be. Sorry for the bouncing around of thoughts but as I said going into this was what a day may be like and I just explained the struggle of hearing the phone trying to get up. As soon as you stand from bed you have to put on a back brace and knee brace because of how bad your body has broken down and you're forced to wear these all your waking hours.
You finally find it and make it to the bathroom to have to deal with bandaging the painful gaping horror that used to be your eye bc you can't and won't ever truly heal in places on your head because of the radiation effects all over your entire head. People understand the importance of eye contact as humans yet can't imagine how effected and affected people are when dealing with a person with one eye.
Your mind is racing with literally non stop thoughts and oddly having Laser focus but that Lazer focus shoots with each thought and direction creating ADD on steroids. The PTSD from the traumatic brain injury Ironically causes your brain to continuously struggle how to live and think about anything and everything involved in surviving while your own body serves as your worst enemy. Your mind and body aren't working together at all.
Stumbling around lethargically trying to make sure the one and only living creature in your life gets fed and walked. Imagine actually knowing that it's nearly 100% possible that not one single humans walking this earth are thinking about you in any manner at that time. You can go weeks without physically speaking a single word and even when that word comes out it's often towards your dog.
Now take into consideration there's no telling what time it is when this starts actually takes place because your fatigue and sleep are so thrown off and impossible to keep a schedule so it may be midnight when your day starts today then 9am tomorrow or 3pm or 7pm or 3am, no telling or controlling it but guess what the entire world around you has a schedule that exist everyday that every other human is going by.
Most days even bothering trying to eat at set parts of your day regardless of times, you struggle to eat because you can't chew with the majority of your mouth, and you have almost half dozen adult teeth that despite how hard you take care of your teeth, they have completely just fallen or crumbled out and cannot be fixed. Good news is you are extremely self conscious about eating in front of people because of facial nerve palsy but you're never around anyone anymore so it doesn't matter. To try and correct the facial nerve loss they cut directly under your right ear and literally peeled your face open and took the nerve from your tongue and attached it to your severed facial nerves in an attempt to bring back those nerves. But now this means your tongue for the rest of your life will always be pulled to the right so eating and speaking is now a constant challenge, matter of fact I had to teach myself to speak again bc now I truly have to think about everything I am going to say before I say it so I can consciously pull my tongue straight in order to speak clearly. If I get upset or mad people can't understand me because of how bad I slur my speech.
Now wrap your mind around this epic thought and feeling truly, imagine knowing you have no schooling, no career, no home, no family in your life, no friends, no relationship or significant others of any kind, no coworkers or fellow students. You have NOBODY, your service dog has been your everything and is the only love you feel or seemingly share with and her age and health is absolutely coming quickly to an end as well. Soon that one and only other life will pass also and at that point you will stand upon this earth truly alone.
Because your career and schooling crumbled to your health issues your Financials have completely destroyed you can't get a bank account or even basic cell phone plan. You had perfect credit now you have stacks of debt and inability to pay anything. Your health that crippled your career and schooling and took friends and family away hasn't been fixed, not only has treatment fixed the original problems but as time has gone on new issues have spawned and untreated. Next the severe chronic pain and severe add that it took time to get diagnosed, suddenly not only no new treatments, now you're off your pain meds and ADD meds. So you're in pain all day and night with zero relief. Add in the fact you face multiple severe migraines every week that don't stop from any medicine and last 12 hours plus.
Everything you have ever done or tried is being taken away because of either the effects of cancer or the treatment. You chose none of this, matter of fact this started at 2 years old! These aren't caused by choices or mistakes you made in life, you have NO CHOICE OR CONTROL. Doctors push you away because of your complex, people can't fathom the idea of being sick and not just going to the doctor and getting treated and healed. That doesn't happen in your life, you're like the red headed step child and nobody wants to deal with conditions they can't fix. On top of that insurance has given you the scarlet letter literally your entire life and made your pre-existing conditions cloud you from coverage. Then somehow despite all the major medical issues 4 states have turned you down for disability or any assistance somehow. The American Cancer Society won't help in any manner because they only do things for patients during the actual treatment of the tumor, they are fully aware of what's happening as a result of treatments but they don't care somehow and aren't willing to help you at all. You reach out to the government, churchs, nonprofits, news,radio, anyone and anything to try and find someone willing to help to only realize your story isn't worth the current world's time because it doesn't Sell.
You truly know and see that there is zero sign of anything existing in your future. You have nothing and nobody in your life anymore. And to the few people you know in life anymore you're just a burden because of everything I explained. And everyone fairly has their own struggles and especially now more than ever where people are so self centered that they post every little thing they do or say, nobody has time to or desire to understand or worry about your time on this Earth.
Life we all know isn't fair, but despite everything you have survived, you have beat one of the harshest childhood cancers, you have had one of the rarest brain cancers and survived multiple brain surgeries, you have had major traumatic brain injury, you have beat bacterial spinal meningitis, you lost an eye, you lost control of half your face, you lost half your hearing, you have chronic eye pain, chronic migraines, chronic fatigue, chronic nerve damage, issues eating speaking and major dental problems, your hormones are all low or depleting, you have short term memory gaps, severe ADD...You have pushed and pushed through all of that with the previous belief everything happens for a reason, you believed your nightmare would help others not to follow in your footsteps and that you would be able to help others. Instead your survival or even reason to survive is running out or gone and your chances to help anyone is gone.
This is your reality....
The last thing I want to say on this and why I tried to fully detail this is what I've learned throughout my entire life and my medical struggles. Human empathy truly only comes from personally experiencing a situation so no matter what nobody is listening to me right now or honestly possibly nobody will ever truly understand my particular struggles which I actually am happy about bc I don't wish this life on anyone not even the most evil, nobody should have to Know.
The info explaining all of this was written years ago at this point and as of this year I turned 40 in Feb and in the last 6 months have added so many horrific medical issues on top of the previous ones. It's just been my service dog and I for a very long time and without anyone or really anything I have been from AL, GA, FL, CA, MD, NY in the attempt to possibly get medical help to survive and it's been surviving out of sheer luck at this point. Until late in 2021, finally after 10 years and 10 cases for SSI/ Disability in an attempt to obtain Medicaid/Medicare I was finally granted it. But in all honesty for the most part I still exist in a gray area because of my childhood treatment when it comes to getting help medically today. The latest issues more or less cement previously learned life expectancies for me with and without things improving. Below are two old news stories about my experience many years ago and if I send this in email form I am attaching the article with it because a lot I try to explain is probably said better by the professional that wrote it."
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.4K Cancer specific
- 2.8K Anal Cancer
- 442 Bladder Cancer
- 307 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 394 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.1K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 668 Leukemia
- 788 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 234 Multiple Myeloma
- 7.1K Ovarian Cancer
- 55 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 533 Sarcoma
- 715 Skin Cancer
- 646 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards