the mask

If only this post were about this mask...

Instead it is about my blue mask.  Today I was fitted for the mask I am going to wear during radiation.  You can't move at all during radiation because many beams are being shot through you and they need to hit very specified areas.  For some cases, in order in insure accuracy, the patient is tattooed at the point where the beam will hit.  My father had cancer when I was a senior in high school and this is what they did for him.  He still has little dot tattoos from when he had radiation.  I never expected to get any tattoos, ever.  Alas, I will not have to.  Instead I get a mask.  Today was just my radiation simulation, not the actual radiation, so I am a little foggy on the exact details of the process... Apparently I will lay on a table and my mask will be placed on my face and shoulders, and they will sort of "screw" it into place in the table... so I really can't move at all.  Then I will get radiation for like 5-10 minutes.  They'll unscrew the mask and I am off on my way.  I will do this everyday Monday-Friday for 6-7 weeks.  Could be worse.
Today they had me change into a gown and they laid me on a table to get a CT scan.  It was unlike any other CT scan I have had before.  They taped wire around my flap on my neck so it was clear in the CT scan.

The flap looks really good... right?

I had to hold on tight to some handles to pull my shoulders down so they had a better shot at my neck.  Then they took this warmed blue plastic to mold the mask out of.  I had to stay very still while they molded it around my face.  It is very tight fitting.  Apparently even facial hair messes it up and men have to shave before they can be fitted for their mask.

After the mask hardened they fixed me down, did a quick CT scan, took it off and gave me a tour of the radiation center.  Should all be very simple next time I am there.

By the way... I named my mask.  It is called 'The Tardis'.

a way to help...

This is a really hard blogpost to write.
It's hard to forgo my pride and address this.

Many want to know how to help me.  It's difficult because other than the couple weeks after my surgeries I haven't been ill.  I wish it were as easy as chicken noodle soup.

Having and beating cancer is really expensive.  I have started working at Dairy Queen again to fund as much as I can... but minimum wage doesn't get you too far.

So, my family is running a fundraiser for me.  My cousin owns an Outback Steakhouse and on June 21 we are doing a luncheon to raise money where all the proceeds will go towards my medical bills.  My cousin is taking a big hit here, but that doesn't matter to him.  The meal will be delicious and it will be so much fun to all be together and what not.  There will be items up for raffle and it will be a good reason to take a long lunch.  Just make sure to RSVP to my mom.  My aunt made a flyer with the details of the event and it is at the bottom of this post.

I also realize that many of the people that love me and want to help don't live in the area.  That's why this blog exists, right?  So, if you'd like to help, you're welcome to donate to help me pay for my medical bills.

You can send any donation to our home:
20125 Silver Spring Dr.
Northville, MI 48167

Or we set up a PayPal account.  If you set up a PayPal account you can click the 'Send Money' tab and enter in my email address, kharri12@yahoo.com .  It is probably easier and more secure.


Thank you all so much for your support and love.  Thank you for reading this and being a part of this odyssey. (I was going to write journey, but I didn't like it.  So I looked up synonyms and odyssey came up.  Kind of fitting, right?)  So come to the luncheon!  If you can't come and you'd still like to help then make a donation.  Thank you thank you.

Also, this is the note attached that my Aunt Kim wrote about the event:

Please come and join us to help celebrate that 'Katie is kicking cancer's keister'!

This very special woman has been a joy to so many of us and we need your help to lighten the financial burden that she has incurred since her fight against cancer.  Katie just had her second surgery and is doing very well.

As most of you know Katie is a student attending a college in Utah.  Funds are very limited.  We are fortunate enough to have Outback Steakhouse host a luncheon on Katie's behalf.  The donation price for a ticket is $20.00 to enjoy a great meal and support our beautiful girl, Katie.  There will be raffle gifts that have been generously donated to help generate more money for Katie.  100% of the proceeds will be donated to Katie.

The date for this event will be June 21, 2013 from 11:00am to 1:00pm.

RSVP no later than 6/1/2013.  You must call Trish Harris at 248-347-1778 to reserve your seat (seating in the restaurant is limited).

We do realize that this is a work day for most of us but, lets all BLOW it OFF and do something wonderful for a very special person.
(Let's face it, we all take sick days for less of a reason!)
If you cannot attend the luncheon please consider a monetary donation to Katie.  Make checks payable to Katie Harris.

Outback Steakhouse
6203 Orchard Lake Road
West Bloomfield, MI 48322

it's getting better all the time

Nothing significant has happened recently... things are just getting better.

My aunt is in the hospital after getting surgery yesterday.  My dad and I went and visited her today.  It's nice not being the one in the hospital for once.  It was good to be the one sitting in the chair rather than laying in the bed.  It was good to finally be able to serve someone else by visiting them.

I've been frustrated lately trying to figure out how to get better.  Do I exercise?  Do I lay in bed or sit on the couch?  How tired is too tired for someone a couple weeks post surgery?  What kind of exercises can I possibly do with my neck and back so disheveled?  Today I couldn't take it any longer.  Mom and I went to the gym so I could walk.  I need exercise!  I need movement!  I walked on the treadmill for like 45 minutes watching Dr. Who on my phone.  I wasn't power walking or anything, but I wasn't sitting on the couch.  Little victory of the day.

I feel like I should end this post with something super inspirational.  Hm... Don't take life for granted!  Or more applicably... Don't take your sturdy neck and back and ability to move freely for granted!  Not so catchy though... Probably won't be seeing that saying on bumper stickers anytime soon.

Picture of the day:

Tori and I playing piano before church

P.S. Can you name the song the title of this post comes from?

3 hours later

Oh... do you feel like you are looking into the past?  Looking into an entrance way of a Victorian house from the 1800s?  Katie... how on earth did you find this picture clearly from the 1800s in such pristine condition?  I colored it.  Wow!  Can you believe that?  The Bachelor was 3 hours long tonight... and let's be honest, the show isn't that good.  I need to do something else while watching it.  I know I should stop watching this nonsense.... but Chris Harrison just keeps me hooked.

Today I had my follow up appointment at UofM.  Both Dr. Ward and Dr. Kang were there, and they are two of my favorite people, so I was really pleased to see them.  I have had a drain in my neck since my surgery that I have been hiding every time I am out in public.  Tucking away the tube and pinning it to my shirt and what not.  It's been a pain.  Not that I have been going out in public a lot.  Once to get about 8 inches of my hair chopped off... once to go to Church.  Regardless, no one wants to see a bag filled with my blood and fluids.  Not even me.  I'm lucky to have the mother I do who has been so willing to empty out my drain.  But today, finally, Dr. Kang took out my tube.  Now this thing has been in my skin for nearly two weeks so it was not wanting to come out.  I was sitting in the chair bent over, complementing Dr. Kang on his Nikes, when he yanked it out.  "Hey, Dr. Kang.  Are your shoes new?  They're really.. ahhhhhhhhhh."  Dang.  It hurt.  Then he had to take a giant syringe to another part of my back, which also was very unpleasant.  Dr. Ward said he made Dr. Kang, his fellow, do these less enjoyable things so I would still like him.  I continue to love Dr. Ward proving he took the right course.  But I can't hate Dr. Kang because he kept bribing me with candy while I was in the office.  Those Hasbro frog gummies.  Really yummy.  And persuasive of love.

So, not much will be happening between now and the 25th of this month when I will meet again with my radiation oncologist and we will start the plans for radiation.  They will make a mask/face cage thing that I will wear during my radiation sessions and we will just prepare everything else.  I don't exactly know what "everything else" entails, but I'm not too worried about it.  So until then I just need to heal.  Keep doing my neck exercises, going to physical therapy, I need to just get better.  I don't like sitting around, but it's hard for me to gauge what is too much.  I'm sure I'll find a good balance over the upcoming months....

So keep posted as to what is coming up.  Oh, and this is what I look like post haircut... Dr. Kang said it looks really good and I look like a "new woman".  Dr. Ward said, "Oh.. well that doesn't look bad." :)

home

Yesterday the doctors gave me the go ahead and released me home.  Driving on the freeway kind of messed with my senses.  I guess because I haven't walked very fast in the past week... and you wouldn't believe how messed up my senses are.  I mean, they cut out a ton of my neck.  I think it may be the pain drugs I'm on.  But seriously, moving my head too fast and turning the wheelchair too fast makes me dizzy let alone a car on the freeway.
So.  I'm home.  I got to sleep through the night last night!  No being awoken every 2 hours to get my vitals taken.  There have only been a couple problems since I've been home.  Last night I was taking my medicine before bed and kind of choked taking my first pill.  I think it broke and I inhaled some of the powder.  I just started coughing like crazy and during every breath I took the rest of the night I was wheezing like mad.  It really freaked me out.  I was convinced I had it down in my lungs.  I called the doctor that was on call and he said he was "pretty sure" I would be okay.  How perfect would that be?  I survive this major surgery, survive cancer, and die my first night home from a pill.  Of course that didn't happen... I am writing this blog... but it would have been kind of nuts, right?
Second problem... Today was largely spent with my sister in law, Lauren.  I spent a week in bed with the same bun on my head, and when I took it out the majority of my hair was in a knot.  Literally, a knot.  The core of it was hard as a rock.  Lauren spent 5 hours trying to get it out.  She used conditioner, other hair products, olive oil, knitting needles.... and she couldn't get the majority of the knot out.  She ended up cutting it out.  I didn't realize she cut it out until it was in front of my face, unattached to my head.  I had a minor freakout...  But she spent so much time and saved a ton of my hair still.  I'm so grateful for the time she spent.  I'm gonna get my haircut on Saturday. Hopefully they'll say they can turn the short part into layers and not have to cut all my hair up to my chin.  Let's be honest, nobody wants to see the flap on the back of my neck.

Okay.  My dad keeps huffing next to me because he is quite impatient.  It is time to do my neck exercises.  They're actually pretty hard right now...

don't look at the bottom of this unless you have a strong stomach

I kind of feel like the title of this post is like a title of a Sufjan Stevens song on the Illinoise album.  Ya know, like "Riffs and Variations on a Single Note for Jelly Roll, Earl Hines, Louis Armstrong, Baby Dodds, and the King of Swing, to Name a Few".  Regardless... don't look at the bottom of this post unless you have a strong stomach.  It even grosses me out and it is my own body.  

The past couple of days have included many great progressions on my part.  That feels kind of weird to state, but really, I have felt so much better the past couple of days.  I haven't been eating much because I have felt so sick, all the time.  But yesterday my brother brought me Olga's snackers, which may be one of the most delicious things ever.  I was able to eat them and not feel sick!  I ate some more today and felt good as well.  I'm so grateful because really, I've been eating only ice and grapes and some rice.  My doctors have been upset with me and say I need to eat to leave.  And frankly, I wanna get out of here.  So, I'm glad I've found something so delicious to eat and impress my doctors with.

Yesterday Dr. Ward came to speak to my parents and I.  He said some of the sweetest things.  Really, he was meant to be my doctor, and he knew it.  He felt so guided during the surgery and everything turned out exactly as he wanted it to.  This helped me look at the big picture.  Having cancer sucks.  Having this rare cancer at age 23 sucks a lot.  But God is there every step of the way.  He guided us to find Dr. Ward.  He guided Dr. Ward.  We got one of the best neurosurgeons as well, Dr. Yang, because of his connections.  God's hand is in all of this nonsensical cancer business.  During Dr. Ward's visit he brought the final pathology report from all the tissue they removed during my surgery.  It is clean.  100% clean.  Even the scar tissue from my first surgery.  As far as they can tell the cancer is gone.  Can you believe that?  I am shocked.  And so happy.  It's gone!  Tumor board meets tomorrow and they'll say I still need radiation, which is fine.  We need to be absolutely sure that we get it all, even the tiniest of cells.  I don't want to have the cancer recur later in life.  But wow.  The cancer is all gone!

Maybe that is what gave me the boost.  Yesterday I walked without holding onto someone for the first time.  I did two laps around our part of the floor.  Today I climbed 3 stairs.  That was a bit rough.  But I did it!  I worked with PT and OT today.  They feel like I am doing really well.  I've been sitting up in a chair on my own.  I showered for the first time.  We washed my hair and found that perma-bun on my head resulted in a knot in the back of my hair that is taking hours to get out.  If we have to cut it out I am going to be really sad... I love long hair.  Plus no one wants to see the back of my neck and I would have some short hair.

Overall the past two days have been really, really good.  And we think I can go home tomorrow.  A week in the hospital was long enough for me.  And finally... some pictures from this hospital experience.

Right after surgery in the ICU

Hooked up to too many machines

Writing this blog... right now. My mom is quite the picture taker.

The picture no one wants to see.  The flap is on my neck.  They took that from the left part of my back, which is why I have an incision there.  Going up the center of my back is a drain to my flap.  Gross, I know.  At least I never have to look at it.  Oh, can't forget the cute hospital underwear.

news from the inside

So... I haven't washed my hair in nearly a week. I'm not sure if it will come out of the bun on my head or if that will be permanent. Regardless, no pictures of me will appear on this blog. I am far too vain. There is no controlling what my mother puts on Facebook. Actually no controlling my mother in general.

I wake up several times every night. This is mostly because nurses are poking and prodding me for my blood pressure and what not. In fact, two nights ago I scared the nurse pretty bad because my bp was at 77/45. Or something like that. They just wouldn't let me sleep even though I insisted its normal for me. Eventually I convinced them to leave. This morning I was awoken by a group of like 10 doctors. Here to chat and see how I am doing. We play the same games. Connect my finger to my nose, then their finger. Repeat. Switch hands. I haven't been walking too well on my own and they were nervous I have nerve damage. (You know, more nerve damage than them removing a couple of my nerves causing half my head to be numb). But I passed the MRI and their tests. I even walked back from the bathroom on my own today. It may only be about 5 steps away but we all have our own little victories to claim.
My doctors are upset with me because I haven't been eating well. They must not understand how sick I feel whenever I try to eat. How it makes me so nauseas. Or maybe they do understand and they also comprehend a bit more. If I don't eat, I won't heal. If I don't walk, I won't heal.
Conclusion: I need to stop being such a sick baby. I need to eat more and walk more. It's amazing that walking is so difficult to me when a couple months ago I ran two half marathons. And now I need help to walk 15 steps.
I feel like I am progressing at an acceptable rate. Heck, a couple days ago I couldn't walk two steps. Now I can walk five. On my own. I will take that victory and walk with it (at least a couple steps).

from the iPhone

I guess I can write a post. Mind you, it's not going to be long.
As my mom wrote, my surgery went well. It was only 6 hours long and Dr. Ward got the margins he wanted. So he removed about 2cm of muscle and even some bone circling where the tumor had been. He put in a 'flap' from my back onto my neck so there is some tissue there. But... It's all still really hard. It's extremely difficult to hold up my neck. I can't for more than a couple seconds without getting super dizzy and nauseas. I've sat up only twice and wanted to die. I can't feel the left side of my face or ear... And that is permanent. It's all so new and strange.
I guess I'm just feeling whiney because all this is new and strange. Because I'm sick of laying in this dang hospital bed... Always on my right side. Because I'm frustrated that I can't hold up my head on my own. That's a frustrating thing!
But I have a great doctor who checks on me periodically, who prayed for me last night with the Ann Arbor high council. I have nurses that are patient with me, who turn me and adjust pillows around me as long as I am uncomfortable.
I have people praying for me all around the world. Thank you. I'm sure it is making all the difference.