my brain tumor – the accessory that started it all

stop me if you’ve heard this one…

(recently i’ve ended up being asked to tell the story of my medical drama a few times. i realized that i’ve never written it down. so here goes.)

in the spring of 2009, i noticed that the gradual hearing loss that i’d suspected was much more serious than i realized. i was watching tv with my right ear on a pillow, and when i flipped to the other side i was shocked at how loud the volume was. i made an appointment with my doc. a physician’s assistant – she was the only member of my doc flock back then.

she looked in my ear and didn’t see anything unusual, so she referred me to an ENT. dr. benton did hearing tests (by then it was early summer 2009) and told me that it was likely that i’d had a virus and was gradually going deaf in my left ear, but he wanted to send me for an MRI just to rule out a rare brain tumor. said not to expect to hear from him for a week or so after the MRI.

now, if you’ve been paying attention you know what’s about to happen. he called me a few hours after my scans and told me that yep, i had that rare brain tumor (an acoustic neuroma) and that i should see a neurosurgeon.

what do you do when you get a call like this? well i figured that i was on a roll in the odds department, so i walked from my house to 7-11 and bought some lottery tickets and a slurpee.

now fortunately my only uncle just happens to be a neurosurgeon, so i had copies of the scans sent his way. i made an appointment with a neurosurgeon here and my mom went with me to see him. that’s when we saw my tumor for the first time.

yep, that's me.

that neurosurgeon talked about the possibility of treating the tumor using gamma knife, which is a non-invasive focused beam of radiation. my uncle and his colleagues looked at my scans and were pretty sure that i’d need surgery because the radiation can make a tumor swell and mine was already pressing on my brain stem.

my uncle got my file in front of dr. spetzler in phoenix. dr. spetzler is the man when it comes to the kind of surgery i would need to deal with my tumor. dr. spetzler reviewed my case and decided that he would do the surgery. so before i knew it, i was on the phone with his office scheduling the surgery for about a week out – august 7, 2009.

(here i’m skipping describing the frenzy of activity to get ready for this trip. daughter, house, job, pets…)

my mom and i flew down two days before because i had pre-op testing to do for the surgery. the day of, my last memory is laying in the hospital bed with the IV in and my mom and cousin mark (he lives in phoenix) sitting with me.

the next thing i knew the left side of my body wasn’t following directions. i rip-van-winkled about a month. so my apologies if i still don’t have all of the details straight. i have a good excuse – i was pretty busy trying not to die.

so i had the surgery (brain surgery #1, if you’re counting along at home) and it went well. dr. spetzler de-massed the tumor – he couldn’t remove it entirely because it was too connected to other structures in my brain. they brought me out from under anesthesia and i talked to my mom. i think that the story goes that i said “we did it, mom” and maybe said i love you in sign language.

that night the tumor collapsed and caused a bleed. they did an emergency surgery (brain surgery #2) and there was pretty serious concern that i wouldn’t live. that bleed was the stroke – a intracerebral hemorrhagic stroke. there are 3 main kinds of strokes  – the most common type is the one where a clot blocks an artery. the kind that i had is when blood is released into the brain by a ruptured artery.

so after that, i had a seizure. they did another emergency surgery (#3) and i think that part of the tissue in my cerebellum was necrotic, so they removed it. this is part of the reason that my balance is shot. those first 3 surgeries were all within a period of a few days.

things were pretty stable after that. i know that i spent a lot of time in ICU, and i was in the neuro-ward of st. joseph’s hospital in phoenix, which is where dr. spetzer practices. i was on an external shunt to help regulate my brain pressure. when it never stabilized, they “installed” an internal shunt (brain surgery #4). i think that this surgery was about 3 weeks after my first. i still have the shunt. it’s all internal and is adjusted with a magnet.

getting my shunt adjusted

the adjustment doesn’t hurt at all. in fact it’s pretty fun – it plays a little tune when it’s finished. i was disappointed when i found out that i wouldn’t get to carry one of those little cards that gets you around metal detectors – my shunt doesn’t set them off. they won’t take it out unless i need another brain surgery sometime – they basically just turn it off and leave it in there.

which brings me to surgery #5. my docs in phoenix looked at some scans once i got back to oregon, and they decided that i needed another surgery. so my mom and i flew down there again in january 2010. i went for the pre-op testing, then went to meet with the surgeon. i remember listening to him talk, and thinking “is he about to say what i think he’s going to say?” and he did. he said that he didn’t think i needed the surgery. the risks made it not worth it. he said that i needed to stick around phoenix for some more tests. i was just starting to make the transition from using the wheelchair to get around to using a walker. that week we found out that museums are great places to practice using walkers. usually by the time i caught up with mom as she was checking out some relic or cool piece of art, she was ready to move on to the next one. i even got to go back to visit my nursing home. it was great to be back.

my triumphant return to capri, my nursing home

which reminds me that i digress. i was in the hospital, st. joseph’s, for 5 weeks. they released me and i was transported by ambulance (my first ambulance ride) to capri, a “sub-acute rehab facility” – it was a nursing home, and was just beginning to take younger patients for rehab. while i was there, i was working on things like sitting up and standing at a bar (not that kind) with someone (dennis, my wonderful PT) holding me up by a gait belt, my occupational therapist jan helped me work on getting my left hand a little more with the program, and my speech therapist helped me start talking less like a robot. i lived at capri, with an assortment of 80+ year-old roommates, for 3 weeks. i truly had the time of my life there. people were kind to me and encouraging. i started to see that with hard work i was improving. and i started to feel more and more like myself. i will always have a soft spot in my heart for nursing homes and the people who work there. everyone, from the cleaning and construction staff through the dietary staff and nurses and therapists, treated me so kindly and made me feel like there was hope for me. i remember them all, and always will.

my therapists tina, jan and dennis when i came by my nursing home to say hello.

when i was ready to leave the nursing home, my mom, our old family friend madalaine and i set out on a 4-day road trip to get me and my mom’s car (my dad had driven it down to phoenix to be there for one of my surgeries, i think) back to oregon.

me and madalaine rocking our denny's manners

i lived with my parents for a few months after i got back – it wasn’t safe for me to live on my own. i had home health for a while, then i started outpatient physical therapy. learned how to walk again and all that. but that’s a story for another time.

so essentially the brain tumor is still in there. i have MRIs once a year, and the idea is that if it starts to grow again they can do the gamma knife thing to treat it instead of another brain surgery.

when i started to put together what had happened, i told myself that 10 years in the future i wanted to look back and be glad that the stroke and everything happened. and i’ve made all my decisions with that in mind. almost 2 years out, i certainly feel that way. so much good has come into my life because of this. and i’m a better person for having been through what i’ve been through. i look back on the last 2 years and i see kindness and i feel gratitude.

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10 responses to “my brain tumor – the accessory that started it all

  1. Amazing journey Kristie. Just keep the recovery coming. Your strength inspires us all. BTW, excellent writing skills. 🙂

  2. Old news for me. Whatever. The sign language? That was after surgery #2 – that’s how we knew your brain’s higher functions were still there.

  3. At the end of this, there is an advertisement to download Transformers! Needless to verb, this is all the transformer I need.

  4. thanks for this recap, kriste. glad you’ve found a very good (pedestrian friendly) path on the other side of all this. reminded of the movie “jesus’ son” for some reason. happy weekend!

  5. Kristie, This blog about your journey with a brain turmor is awesome… It’s great to see that you did not allow your feelings to stop you in writing this blog. I learnt alot from reading this..Many Thank you’s..Deb

  6. thank you for reading my blog, deb. and for taking the time to pass along your reaction.

  7. Julie Barnes Lenden

    Hi Kriste. I found your blog on Marcy’s Brain Potential site and am inspired by your strength and outlook. What a journey! You are an excellent writer to boot.

    Take care,
    Julie Barnes Lenden

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