Monday, January 3, 2011

hopeful begining

Hello everyone!
this will be the blog where i will share with all of you the tumor-ey side of me. my ups and downs, and ins and outs of my tumor-ey self.
i will update my latest of my tumors.
i will share how i am feeling about it emotionally.
i will share how i raise money to pay for medical bills.
i will give tips on what to expect and what not to expect when going to doctors.
i will share knowledge of medical insurance and how it works.
i will share what i bring to the doctors when i go.
i will tell you what to expect when going under the knife and how i deal with it.
Basically i will share anything and everything you need and want to know.

First of all i should probably tell you about my tumors...

i don't like to call it a disease or disorder. I feel like i am made how God wanted me to be, so i don't want to say those words (disease/disorder) because i truly believe that i am made exactly how He intended.
my "tumaaah's" as i like to call them. (just imagine how Arnold Schwarzenegger would call them in 'kindergarten cop') the docs say i have over a thousand ?? i have them from toe. 'head' as in 'skull'...not 'brain'. the brain is actually the only part of me that doesn't have a tumaah. pretty miraculous huh? skull, face, neck, shoulders, back, spine, all down my arms, hands, fingers, torso, ribs, chest, butt, aaaallll down my legs, ankles feet and toes. yep. my body gets an A+ for being thorough. well "uncountable"... just imagine. or don't. cuz its seriously gross looking.
anyways, lemme tell you what my docs call my tumors and tell you when i was diagnosed.
they call it 'Neurofibromatosis' how i break up that word is into 3 sections.... "Neuro" nerve "fibroma" tumor "tosis" its at the end of every disease right?

"Neurofibromatosis type 1, also known as NF1 is a not so rare disease that effects 1 in every 3,000 births across the world and has a wide variety of effects on each NF1 patient. Nerves are like wires, and just like wires, nerves have a protective coating surrounding them. this coating is made up of cells and it is the excessive growth of these cells that cause neurofibromatosis tumors. Neurofibromatosis tumors have a 15% chance of becoming cancerous."--this is bits of a definition i saw online.

....some NF1 patients have 0 tumors. ive read that 1-5 tumors is average....

i was diagnosed when i was 19. i went into the doc reguarding painful 'bumps' under my these tumors grow in and on my nerves. some are different than others. i am learning there are actually quite a lot of different tumors in this 'disease'. a lot of mine are the plexiform neurofibromas. the best way to describe this type is to call it complex. these tumors are little boogers. they wrap themselves around the nerve like a huge tangled mess. i'm sure i am not using scientifically accurate ways to describe it...but this is how I describe them. there are also some tumaah's that are really easy to remove surgically. these are on peripheral nerves (your peripheral nerves are basically nerves that are close to the surface of your skin) these are usually little balls that are just growing pretty loosely off of the nerve.

my case is pretty interesting is what i am gathering from the look on some peoples face when they see me. you see, my charts vs. my body just don't match up. one time i was at my doc's, and i had made it from the waiting room to the actually room you see your doc. and i was waiting for his nurse, whom i had yet to meet, she walked into my room took a really quick glance at me and said "oh i'm sorry!" and walked back out of my room. about 3-5 minutes later she walked back and said "are you kelly?" and i said "yes" and she said "kelly SULLivan?!" (i feel like she emphasized my last name) and i said "yes?" i was sooo confused that she would doubt that i am who i say i am. and she said "oh! ok..." and she came in and introduced herself. we were preparing for an upcoming surgery so she was asking a lot about my tumors and how i am feeling, and after a while she fessed up. she said "you know, when i first walked in here i thought i had for sure had the wrong patient. i was expecting a wheel chair, and someone who looked FAAAAAR worse off than you!" i smiled big and thanked her for telling me that. i told her of Gods love and mercy on my life and that i know i am a miracle.

my not too bad tumors vs the tumors that made me a tumor hater.

'not so bad tumors'

since i have over a thousand innumerable tumors i have quite a few that i probably have never even felt or realized. some of these are as tiny as a pea and others are big as a large grape. like the peripheral nerve ones i told you about. no big deal. you can see some of them under my skin...but they don't cause too many side effects. however if they get hit or bumped....holy cow! the PAAAIN is like shooting lightening down whatever nerve it is hitting your funny bone, but worse.

the big the bad and the UGLY....

1) Big Bertha: so i have this plexiform in my chest. it is coming out of my T spine (thorax/chest). it goes into my right side of my chest and is taking up 40% of my lung capacity. its like the size of a soft ball. big bertha is causing me great pain. my shoulder constantly aches and my right arm is numb and tingly from the arm pit down to my middle finger-pinky. i constantly am dropping things. p.s. all the other white stuff you see is tumor as well. the big one kinda comes out of my spine looking like a hose. and then waBAM bertha was born.
2) Little Creeper: i also have one in my spinal canal...which is different than 'in the spine'. the canal actually is the protective cavity that your spinal cord flows through. eeeek. it is in my upper c-spine level (neck) causing mild stenosis. this one scares spinal cord....if this tumor starts to take over i would be paralyzed from the neck down.

(don't have a pic of him on my computer....he is about as big as a garbanzo bean.)

3) Scranton Strangler: when i talk, sometimes people (strangers) ask if i'm sick. i don't blame them. at times it sounds like i have bronchitis... and i PROMISE i used to be able to sing on key. i may have even gave Jewel a singing lesson or two, but not anymore. i've got these tuuumah's on my vocal cords too...i said i was thorough didn't i? well, my left vocal cord went paralyzed around may of 2009. this is actually what led me to initiate going back to the doctors. which led to seeing specialists and the specialist then finding big bertha in my T spine. (which is a very important discovery)
my right vocal cord has a much bigger tumor on it but is surprisingly still working for me! oh yes, and these tumors on my vocal cords just totally mess up my swallowing and breathing. i will randomly choke and start coughing not being able to stop. at times it feels like someone is choking me. 4) Climbing Monkeys: to me, my spine looks like a ladder. and these tumors are the monkeys that never stop playing on the ladder. these little suckers are small but they are brats! they are in clusters and are plexiform tuuuuumah's. the radiologists say they are "virtually innumerable on every level of the spine" these ones are the ones that cause me a LOT of back pain. this is my lumbar and my whole spine looks like this...
5) Acrobats: these would be the tumors that flow down my sciatic nerves in my legs, as acrobats swing around and do tricks on sciatic nerve is 1-1.5+ inches wide in some places. these bad boys are makin my darn legs and ankles get weaker and weaker, i trip very frequently and recently i even fell over because one of my legs just simply gave out. these first 2 pictures are of my thighs, the last 3 are of my calves to ankles...

well, there you have it. that's what most of my insides looks like...

i hope that as i share with you my journey, there will be comfort and hope put in your heart. i hope to inspire you and motivate you. don't run from your disease. if you feel alone, i will do my best to support you emotionally, if finances are hard then i can help you think of ideas to gain funds, i will just tell you now though. i have a team of friends that have been the biggest help for me with raising money. i know i cant rely on them forever, so i have come up with my own plan, something that i have high hopes for. i will get back to you very soon with the details on that.


  1. This is a great blog. I too 'suffer' from NF1, and have many similar complications. You seem like you have a fantastic outlook on life and handle things really well!
    I wish you the best of luck throughout your journey with NF. Know that you aren't alone in your battle.
    Your NF sister

  2. You are an amazing person Kelly!

  3. Kelly Girl
    Attitude is everything! You have an awesome attitude.
    God is our ever present helper
    you new fan

  4. Thank you so much Kelly!!! I am a mother of a wonderful 8 year old little girl named Grace who has NF1. This is so insightful and I can't wait to go along with you in this journey!!

  5. Thank you for this blog! You are amazing!!

  6. wow you guys! thank you so much for being so encouraging to me! i am excited to be of help and insight. i appologize for not posting a new trying to get it all together. hopefully by friday i will have it up. AND i have an appointment feb 3rd, so i will write about that too....take care everybody!

  7. Kelly,

    My wife deborah has NF2, and we live in Ashland...she would like to contact you but has great difficulty in typing. Is it possible that she could call you? Not sure how to go about giving your our phone number, but you can contact me at and we can go from there? I hope you send me an email, as it could be beneficial to both of you.



  8. hello! i have much to say and ask! i belong to studies as do my sons - where they pay for everything - im the wife mentioned above. typing is frustrating for me. there is a Kelly Sullivan phone listed in Medford, wrong guy-poor soul said he's got a dozen calls already! please write or call. will give my no. under "private". Want to know why you go to Seattle not Mayo Clinic in Arizona? Do you go to pain clinic in Medford? My local Docs say they have around 6 patients with NF, wonder if you're 1 of them. Have 2 sons, both inherited NF2 from me. I am so anxious to talk to you!

  9. Love your blog! Found it through a friend of a friend of a friend. I had a benign ganglioneuroma on my T-spine almost 3 years ago. It was the size of a softball too! I named her Pearl.

    I like your names :)

  10. Great Blog! Thanks Kelly for sending it my way.