Wednesday, February 27, 2013

The Big Day is Done

It is now the end of a very long day. Katie is done with surgery and her surgeons are the best. They came in and did their jobs, all day long and still came back and saw her in ICU at 7:30 this evening.  They did do a lot of work on Katie today, Made a very large hole in her neck to get all traces of cancer out. Then filled the hole with muscle and skin from her back. It will take time for everything to heal, but it won't be long until she will be yelling to get out of the hospital  :)  Please keep her in your prayers as she heals.  Thank you, Katie's Mom

Katie's Mom

Good Morning, This is Katie's Mom. I will be writing for Katie, for a while. At this time she is in surgery. The doctors say about 8 hours of surgery. So here I sit with all of the other people waiting for their loved ones in surgery. They gave her some relaxing medication through her IV that she did not know about, than they put the Oxygen on her. She wanted the Oxygen off because she said it was making her dizzy :) Gotta love her!! I will start reading now and update this after surgery. Have a wonderful day!   8:30 am Michigan time

Tuesday, February 26, 2013

the big day

Tomorrow is the big day.  The very long day.  Not so long for me because I'll be under anesthetic most of the day, but long for my family.

Before we headed to Ann Arbor this evening there was one very important thing I wanted to get done.  Brother Sion, a man from my Church, came over to give me a blessing.  I really love Brother Sion.  He has been here for me since before I was a member of the Church.  I trust him and know he is close to the Spirit.  Because he holds the Priesthood, I knew he would act in God's name.
He came over with his son who is preparing to go on a mission.  (He actually has his call to the Marshall Islands, Kiribati speaking.  My mission friends know the crazy girl from Kiribati that I know.  I wonder if they're all as great as Sister B.)  Rafael anointed me and Brother Sion gave me a blessing.  It was so powerful.  In it God challenged me to build my faith in the promises he has already given me.  Wow.  That is exactly what I need to do.  He also blessed me that I would be safe and that the doctors would be guided.  There isn't much more I can ask for.

A big snow storm hit this area so we rented a hotel in Ann Arbor for the night.  So here I am, sitting on a wonderfully comfy bed, in downtown Ann Arbor.  My surgery is tomorrow at 7:30am, the first one of the day, so we need to be there by 5:45am so I can get ready.  It looks as though the surgery itself is going to last about 8 hours.  Last surgery they thought it would last 2-3 hours and it barely lasted 1, so we shall see how long this one actually takes.  I asked Dr. Ward if he got bored doing an 8 hour surgery, he said he didn't, that the time goes by fast.  Good thing he is the surgeon and not me because I think I would need a break mid-surgery to do a sudoku puzzle or something.

Here is a not so technical description of the surgery.  Warning, even though it's not very technical it is still kind of gross.  They're going to make 2-3cm margins around where the tumor had been, meaning they're going to be removing quite a bit of muscle.  The skin on the back of my neck from the middle of my neck over to a couple centimeters left of my scar will be gone.  Then they're going to take a piece of skin and tissue from my back, make an incision up my back, and move it under the skin to graft it in place of the skin they remove from my neck.  Gross, huh?  I'm truly going to look like Frankenstein for a while.  They say I'll be staying in the hospital for around a week, but I don't believe it.  I think I'll be outta here in 3-4 days, tops.  We'll see who is right :)

We'll see if I have the guts to post a picture of my neck after the surgery.  It's bound to be more disgusting looking than last time and last time was pretty bad.  Also, my mom is hopefully going to make a blog update after the surgery letting you all know how it went.

Thank you all so much for the kind thoughts and prayers.  They have really changed how this whole experience has been.  Keep 'em up tomorrow.

Sunday, February 24, 2013

the new news

I'm horrible at updating this blog.  oh well.

I got a call from my doctor on this past Wednesday and they are moving my surgery up to this Wednesday!  Apparently that is when the neurosurgeon that my doctor wants to work with will be in.  It appears to always come down to the neurosurgeon.
On Friday I got my pre-op physical done.  They were expecting it to be a 2 hour appointment, but thank goodness it was more like 40 minutes.  The P.A. listened to my heart and lungs, took my vitals, and then explained my upcoming surgery a bit.  Apparently I'm perfectly healthy... minus the whole cancer bit.

Saturday I went in to get another MRI, they must have known how much I enjoyed my last one.  A technician put in my IV and then told me the MRI machine was still occupied by the previous patient, so to just sit tight.  She left the saline syringe attached to my IV.  So... I just hung out in the hallway and dressing room for 10-15 minutes with a syringe hanging off my arm.




















The MRI wasn't as bad as last time.  It's a good thing I'm getting used to these things if I have to get one every year for the remainder of my life.  The main difference between getting it done at UVRMC and at UofM is the decoration in the MRI room.  In Utah there was a picture of a beach scene to calm patients.  In Ann Arbor they have floral wall paper with a border of birds sitting on bird houses that closely resemble tomb stones.  Not the perfect design for a room where people are being tested for chronic diseases.

Tomorrow I am going to go over my MRI with Dr. Kang.  In the evening is my first day back at the DQ.  Then surgery on Wednesday.  There is a big snow storm that is going to hit here Tuesday night and my dad plows snow, so it is stressing him out a bit.  He may miss the surgery.  I'm okay with it because I'll be passed out for a couple of hours and won't even realize he's not sitting in the waiting room.  Hopefully he gets his work done before then!

I have plenty of Gossip Girl and The Bachelor to fill the rest of my time until the surgery.  And after as well.  Maybe I'll study for the GRE, we'll see what time allows.

Thursday, February 14, 2013

good news thursday

Last night was tumor board!  (Let's be honest... tumor board... it doesn't sound like a real thing.  It sounds like a made up term.  But real it is.)

Dr. Kang called me last night and Dr. Chugh called me today to update me on the board's decisions.  If I don't get more surgery and just get radiation, my cancer has a high chance of coming back... and they probably wouldn't be able to gain control of it.  Simple decision, I'll get surgery.  It'll be on March 5th.  I'm not 100% sure about what they are going to be looking for during the surgery, but they want to take out a lot of tissue to try and get as much of the cancerous cells as they can.  They say until they get clean margins.  The last surgery wasn't so bad because they took out a tumor the size of an apple that wasn't supposed to be there.  This time they are going to take out a lot that is supposed to be there.  Hopefully there won't be any lasting damage.  But obviously, when choosing between your life and a temporarily weird neck, you're going to choose your life.  Even my scar may have residual cancerous cells in it, so that's gotta go.  New scar, more head shaving.  I wonder if my next scar will also be in the shape of a snake...

No chemotherapy!  They don't think it will do much good, so they made the decision that I won't be getting any chemo.  I'm really relieved.  The nausea and hair loss is something I don't want.

2-6 weeks after the surgery I'll start radiation therapy.  5 days a week for 6 weeks.

And then I'll need to be checked every 3-4 months for a long while for any new growths.  This is good, this is all very good.  There is a light at the end of the tunnel.  And in all honesty, the tunnel doesn't feel that long.

Oh!  The CT scan on my chest came back and it is clean!  So it hasn't spread yet.

And I got a job today.  The same job I had in high school.  The one that I have had any time I am home for an extended period of time for the past 5 years.  Dairy Queen.  Thank goodness, what a blessing.  These hospital bills aren't cheap...

Overall a good Valentine's Day.  My mother and I even made brownies and put frosting and pink sprinkles on them.  So festive.

By the way... has anyone seen the show 'Impractical Jokers'?  I'm dying.  This show is so funny.  Please watch it and tell me how funny you think it is.  Come on, I have cancer and this will make me so happy.  (I use this line on my parents daily... it doesn't really work anymore.)

Tuesday, February 12, 2013

ct scan

I had my ct scan this morning on my lungs.  It was quick.  There was no IV so it was painless.  Very easy. "Breathe, hold your breath."  Maybe 2 minutes long.  And I even got some cranberry juice.  Big day in the Harris household, big day.

My friend Brooke Schultz took some pictures of me the day before I left Utah for Michigan.  She also took some from the "goodbye tumor" dinner we had the night before my surgery a couple weeks back. She's pretty amazing and the post is fun.  You should check it out: http://brookeschultzphotography.com/blog/katie-kicks-cancers-keister/

Monday, February 11, 2013

first day at university of michigan

Things went so well today.
My parents and I drove to Ann Arbor for my first couple appointments at the University of Michigan.  Their hospital is amazing and I knew I needed to go to a cancer research hospital, so this was the place.

My first appointment was with a maxillofacial surgeon, Dr. Ward.  He is a member of my church and so we were connected that way.  It's fantastic because he is an amazing doctor and really hard to get in with otherwise.  We spoke with his fellow, Dr. Kang, for a while before Dr. Ward got there.  They both have their MD and their DDS.  How nuts is that?  So much schooling... and a masters is a daunting thought to me.

After a long walk through the hospital to the cancer center I then saw my oncologist, Dr. Chugh.  She is amazing as well.  She is so helpful and she didn't seem rushed at all, even though she probably was.  This was the appointment I have been anticipating since the beginning of this whole experience.  
See the guy walkin' in the middle, oblivious to a picture being taken?  Gotta love #tomharris.

Apparently I don't have a malignant peripheral nerve sheath tumor, like I had been diagnosed in Utah.  The pathologist at UofM looked at all my slides and made a new diagnosis.  I have a 'high grade myxofibrosarcoma'.  Ahhhhh.  The roller coaster continues.  There is a really good thing about this sarcoma.  It is not as aggressive as an MPNST.  A couple not as good things about it though.  It has a really high recurrence rate so I will have to be checked often the rest of my life.  It also is apt to spread to the lungs.  So tomorrow I have an appointment in Livonia for another CT scan to check my lungs for any tumors.  Keep me in your prayers tomorrow and the next couple days.

Most hospitals have a thing called a "tumor board" where a group of doctors meet together to discuss cases.  Wednesday evening the sarcoma tumor board is meeting to discuss my case among others.  How amazing is that?  A group of 10 great doctors discussing my case and what my treatment should be.  It's comforting.  So, Thursday I should have a game plan.  Maybe chemo then surgery then radiation.  Or surgery then radiation... or just radiation.  Who knows? (hopefully the tumor board..)

Overall:  I really trust my team of doctors that I have met thus far.  I am excited to work with them and see a lot of them.  Although I have an inclination I'll be singing a different tune in the next few weeks when I just want to be at home and not at the University Hospital.  Best thing I can do, just stay positive...


And now I've gotta go and melt my brain with The Bachelor.  I'm strangely obsessed.  Anyone else?

Saturday, February 9, 2013

good things here

Do I really want to be home in Michigan?  Well, no...  I want to be at school and with my friends in Utah.  But there are some really wonderful things about being home.

Tori's first birthday party was today. 
She really is a spoiled princess.
She has an Elmo obsession.
She even got her own cake.
Which she gradually...
destroyed.



Oh boy, I am so grateful for my family here.



Friday, February 8, 2013

how we got here...

It's February 8, 2013.  I am at home in Michigan for cancer treatment.  I have what is called a "Malignant Peripheral Nerve Sheath Tumor".
I think pieces of my journal will suffice for "how we got here".

12/21/2012
According to the Mayan calendar today was supposed to be the last day ever.  It wasn't.  Although I kind of wish it was.
I woke up so sick!  And then it got worse as the day progressed.  All my muscles and joints hurt so bad I couldn't even sleep through it.  My mom took me to the instacare doctor... While we were at instacare the doctor commented on this giant lump on the side of my neck.  I've never noticed it before.  It doesn't hurt at all.  It's just this weird growth.  I need to go get it checked out when I get back to school.

1/3/2013
Today I had a doctors appointment for the lump on my head.  The doctor thinks it is either a cyst or a lymph node.  I have watched far too much 'House' lately and am convinced its cancer (not really, but dramatically so).
1/4/2013
This morning I had an ultrasound appointment for the bump on my head.  It feels way smaller, even Kaylie agrees.
1/8/2013
Today was quite a day... I got a call from my doctor, Dr. Bloink.  He said the ultrasound indicates that it isn't a cyst but some sort of mass.  Talked to the nurse and set up an appointment for a CT scan during my only class today.  The word "mass" kept going through my mind and freaked me out a bit...
1/9/2013
Today was another hard day.  Dr. Bloink called me and said the radiologist sent him a report and it's not a lymph node but rather it is a tumor.  In my mind tumor=cancer.  But that isn't necessarily true.  It is very possible it is benign.  Very probable.  But I was just really scared and I started crying.  I was in my lab and Dr. Grose let me go in her office.  I'm so grateful for her.  So, so grateful.  I am really scared.
1/14/2013
I had my MRI this morning.  It was incredibly uncomfortable.  Definitely not my favorite thing I've ever done.  But I got a disk of the pictures and they are way cool.  Kind of crazy looking.  Really crazy looking actually.
1/16/2013
I had my biopsy today!  It wasn't that bad.  My doctor thinks it is a "neuroblastoma" which isn't that bad!  All it will take is a simple surgery.  Wow.  So many prayers have been said on my behalf.  I am so grateful.  My surgery is scheduled for February 12th.
1/22/2013
My results came in today.  The tumor is malignant.  They are unsure as to what kind of cancer it is... I am feeling so calm.  Like 100%.  I just know that it is going to be alright... Ultimately I trust my Father in Heaven.  I'm not going to lay down and not take any action, but I also know He has a plan.  I've never felt this much trust in Him before... I have cancer!  It is kind of freeing to write it.
1/23/2013
I received a blessing of healing from my bishop tonight.  It was really powerful... I am so grateful to him and how close he is to the Spirit.  More so I am so grateful to my Savior Jesus Christ.  For His plans for me.  For His Atonement and all it enables me to do.
1/25/2013
Here I am... post surgery Katie.  Tumor-less... When I went to operation room Dr. Riddle was just chilling playing on his iPhone.  I think he was bored.  Dr. Riddle thinks the pathologist got it wrong and it is actually benign.  He is way confident about it.  We'll see...

2/1/2013
My pathology report came back today.  I have a malignant peripheral nerve sheath tumor.  I'm ticked!  Why is my body doing this?  But I am also trusting.  Heavenly Father loves me.  He has plans for me.  Great plans.  I trust that.  I trust Him.  So here I am.  Katie Harris.  23.5 years old.  Just diagnosed with cancer.  What to do next?


Now I'm on a journey.  This will document it for those that I love that aren't here in Michigan with me. Don't worry, not all of this will be about the cancer, but rather the whole experience.