My Cancer Story

I was going to save this post for June, when I celebrate my 18 years of being cancer free, but since I posted about being a mentor angel yesterday I figure I might as well enlighten those of you who don’t know me personally.

In 1995, I was a sporty 9 year old girl.  I played softball, enjoyed tennis, bowling, baseball, basketball, swimming and was about to start competing in gymnastics.

mepigroast

Probably the last pre-symptom picture before cancer, my cousin giving me bunny ears

I had frequent headaches in third grade and often wound up in the nurse’s room at school.  I was diagnosed with childhood migraines.  During summer break, I developed the sensation that something was in my right eye. There was nothing visually there but the feeling continued and that eye starting getting a bit lazy and developed a grey haze over it.  It was not long after getting impetigo on my right nostril that my doctor found a tumor in my head through a CT scan.  It was about the size of an egg, located near my brain stem.

MRI

MRI Image of Me

The location of the tumor was never pointed out to me. Sometimes I heard it was near the brain stem, other times I heard it was resting against my optic nerve.  For any radiologists out there, can you spot the tumor?

They diagnosed me with rhabdomyosarcoma and gave me six months to live.  They removed about half of the tumor through surgery.  I underwent radiation therapy for several weeks afterwards, followed by intense chemotherapy treatments.  I basically lived in the hospital for the next six months.

They sewed up my right eye to protect it.  The impetigo eventually ate away a great deal of my right nostril.  I couldn’t keep food down so I was fed through my central line.  I was doped up on pain meds and thankfully only have a few segmented memories of my experience.

I remember waking up in the ICU several times from coding blue or having some complications after a lung biopsy or some other surgery.  Having a catheter is what made those moments memorable.  I hate those things!

I was a fighter.  I not only battled cancer, but apparently my doctors and nurses too.  I honestly have no recollection of yelling at them but apparently I was one tough cookie.  I remember being brutally honest to one nurse in particular.  She always came in while I was sleeping, heavily soaked in perfume, a mouth-breather.  She made me sick, literally.

My oncologist had a knack for showing up whenever I was on the commode next to my bed.  I usually slept during the day because the aliens outside my window kept me up at night.  Sometimes he would run me around the HOT (Hemotology, Oncology, Transplant) unit in the middle of the night, popping wheelies in the wheel chair.

Somehow, I managed to pull through those six months.  My tumor was no longer cancerous.  Recovery would be a long road.

meBIG

Summer at home after my tumor became non-cancerous

I continued being fed through an IV at night and the amount was slowly reduced while I was weaned back on food.   A year later, I was eating food again, my eye was unsewn, my central line removed.

The Long Term Effects of Cancer and Treatments

My hair never fully grew back.  It’s very thin, fine and I have a few bald spots.  The only thing I like about it is that it’s blonde.

The radiation to my head caused damage to my pituitary gland.  I lack estrogen, growth and thyroid hormones.  I tried giving myself daily growth hormone shots in high school but it just wasn’t for me.  I am 4’9″ and haven’t grown since I was 9.  I never reached puberty naturally and was prescribed birth control pills in high school, for the estrogen.  I have been on thyroid medication since then as well.

I have no sensation on the right side of my face, including in my right eye.  I have non-corrective vision loss in my right eye.  Basically everything is blurry and I can’t make out great detail.  The lashes on that side like to grow into my eye, so I have to have them plucked regularly.  My right eye is also susceptible to cataracts.  I had a horrible corneal abrasion several years ago that took about six months heal.  I have no idea what scratched my eye but I now have to use ointment several times a day to protect it.

I have no sensation in the right side of my nose and that side runs almost constantly.  It’s somewhat embarrassing to have your friends or family let you know that snot is about to drip into your mouth.

My hearing is horrible, especially in my right ear.  “What?” is my natural response to anything someone says.  I also have constant ringing in my ears, I hear about 4 different frequencies and it gets louder whenever I’m trying to listen to something that is quiet.  Since September of last year, I also hear my heart beating or my blood pumping in my left ear and occasionally a whirring sound if I sit up too fast.  I have to have my ears cleaned out (with a vacuum/suction) every six months due to excessive wax build up. Sometimes thin scar tissue forms in my right inner ear, growing across my ear canal, closing it.

Radiation (and probably excessive vomiting) did quite a number on my mouth.  I had most of the teeth on the right side of my mouth removed due to decay (near the radiation site).  My jaw muscles also turned to scar tissue and I have a very limited opening (TMJ).  I had jaw surgery in high school to attempt to correct it. It helped by only a few millimeters but also inset my lower jaw so much so that only a few of my teeth on the left side align.  With a 10mm opening, eating and chewing are difficult.  Biting into something is nearly impossible.  What a normal person can consume in five seconds, takes me five minutes because I have to break everything down into tiny pieces and chew between a 10mm opening.  My jaw also locks up on me, sometimes clenching my mouth closed, sometimes locking my lower jaw off to the right and open.

The TPN (total parental nutrition) and lipids I was fed intravenously caused me to have lots of gallstones by my sophomore year of high school.  It took over 10 years for me  to realize the cause of my gallstones was due to TPN and not one doctor mentioned that as a side effect or possible cause!  After 10 years of stomach problems, I finally had my gall bladder removed last year.  You can read more about that story here.

Though undiagnosed, I also believe I suffer from raynaud’s phenomenon.  My hands and feet are always cold but sometimes even just the slightest breeze can cause them to become ice cold, turning my hands purple, but the tips are white.  Sometimes it’s a reverse occurrence where my hands get hot and red and swell.

I’m also susceptible to other forms of cancer in the future, and there’s always that possibility that my tumor can become cancerous again.

Yes, all this crap sucks but you learn to adapt and keep on going.  Just like I beat cancer, I’m going to beat this debt!

survivor3

I am a certified brain tumor survivor of almost 18 years, booyah!

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25 thoughts on “My Cancer Story

  1. All I can say is holy crap. You are an inspiration. Sometimes we think that we have it rough, but damn. I think you are an amazing person and your will power is phenomenal. Keep up the good fight with everything you do.

    • Thanks! Sure, I might have had it rough, but even I have to say there’s always someone who has it worse! I am so grateful to be alive and able to tell my story! My Finnish relatives call that will power sisu, it runs strong in my family 🙂 Thanks again!

  2. Wow, amazing story. I can’t believe you went through all that. You must be one tough fighter. I am glad you got better. I don’t know if I could go through all that. You are awesome!

  3. You were in ICU twice. Once with respritory(bad spelling) arrest, and once with cardiac arrest. Had my family all there the first time you went into ICU. You recovered, then they all flew back a few days later for the 2nd ICU. Your a KICK-ASS peanut. I am proud to be your father.

  4. You are awesome! This debt is nothing….you got a second chance at life and you’ve lived it. Yeah, debt sucks, but at least you are relatively healthy, alive, you have a partner and can tell the tale. If you can survive this, the debt is nothing but a damn nuisance.

  5. You are a very strong woman. I remember your cancer well. You scared me when I went to see you. And it wasn’t the machines or tubes or scars or any other physical alignment you had. I was scared of you yelling at me for dragging my feet or sniffing or swallowing or chewing or talking anything above a whisper that basically meant your lips moved and that’s it and make sure there was no gum near your room. Oh and the signs you made to make sure everyone knew the rules. Hope you kick your debts ass too!

    • Wow, I have no memory of any of that! That sounds horrible! I don’t even remember any of your family coming to visit! I really only remember a few instances of having visitors. I have to wonder how many people I was so rude to!

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  7. Thank you for sharing your story. I hope you never doubt your own strength, after all that you have persevered and conquered! At the end of this past October (2012), I also started experiencing my heartbeat in one ear (left side). It was very strange and unsettling. I did a lot of research and discovered that it is called “pulsatile tinnitus”, and is apparently not very well-known, even among most doctors. I found the Whooshers community (http://whooshers.com/, https://www.facebook.com/pages/Whoosherscom/116096591745641 and https://www.facebook.com/groups/121285117907242/) and they have tons of great info and helpful people, if you’re interested in exploring your issue further. All the best to you!

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  10. Have you looked into a total and permanent disability discharge on your student loans? Email me if you have questions. They don’t tell you this is an option, I found out by someone mentioning it.

    • I have heard of it before, I even know someone who is attempting the process and it seems very tedious. I also don’t consider myself permanently disabled. I may have some minor non-corrective disabilities but I can still work. That’s why I’m having a hard time even applying for SSI.

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