Life More Abundantly

Today is a warm and beautiful day in Akron. It's also the end of a few restful weeks.  On Monday I'll start a co-op with FM Global. I'm excited, and a little bit nervous to be in a new company.
School ended.  I'd like to say it ended well, but that's not quite true.  This semester is known as the hardest for mechanical engineering, and it certainly was.  I took five mechanical engineering classes, and one electrical class.  Funny thing is that most of the mechanical classes were 2 or 3 credits, but you still had the work of a 4 credit class.  I still did pretty well in them, considering.  Also, there's a reason you follow the syllabus schedule-some classes are not meant to be taken together! Basic EE was not fun.  It ended with a not-fun grade, which dragged my GPA way down. But oh well, I passed! This fall will begin my last year of college.  I'm so grateful that God has brought me this far.

The last few weeks between school and co-op have been fun.  I've had a break. I haven't had a break since sophomore year of high school I think! I've always been working when I'm not in school.  And on every spring break or winter break or any other break, I've always been sick.  Finally I've had a few weeks of not-sick, and nothing I have to do! I've been able to Netflix binge (for the first time ever), and sleep in almost every day! I've had a few doctor appointments as well. I've joined a small group from my college group.  It's been awesome to meet a few new faces, and to really get to know these girls better.

The biggest joy these past few weeks have been my friends.  It kinda started with graduation.  All my biology friends graduate this year, as well as a number of engineering friends who were either a year ahead of me, or completed the program in four years.  A friend had an extra ticket, that she was gracious enough to share with me, so I was able to attend the engineering graduation, and see a lot of friends afterward.  It seems unreal that that will be me in less than a year! It was such a nice time taking pictures and celebrating with them.  The freedom of no schedule has allowed me to join impromptu gatherings, like Applebee's with Noelle and Dom, or crashing with Heather after her birthday party, or making pepperoni rolls with Noelle, or West Side Market with Heather and Noelle, accompanied by an Ohio City tour, and glass blowing demo, or just hanging out with friends at the U after service, or Asian market shopping with AJ, or Mary Kay with Brittany, packing and dinner with Sara, Ronald McDonald dinners with Joan and Hanneh, or so many other things! Even just texting friends and snapchatting them has been fun.

Yesterday Noelle and I were talking about when we first met the different people in our mutual friend group.  I realized just how many people God has brought into my life. And there's a whole different group just in my major!  I'm so grateful for the boys who've taken me in, and have supported and helped me, especially through this rough semester.  Having these guys to do homework with, compare homework with, share notes, work on projects, unexpectedly see in the lab on Saturdays, get Penn Station on said Saturday, sprint to Panda Express with, steal stuff out of a friend's backpack, go to the hospital with said friend, reveal test scores together, share Pizza Fire in the basement of ASEC while studying Basic EE, crowd into an over-filled tutoring room to learn said Basic EE, so. many. memories.

The past few years I haven't had this group.  I've been on my own. I struggle through homework on my own, praying that Google would help me. I ate by myself. I didn't even go into the lab, because I didn't have a buddy to "watch my stuff". I felt so alone in my major, as I watched everyone around me chat and laugh with their little groups.  Now I have a group.  Not just one group, either.  Everyone is split into their little groups, but they've all reached out an arm to me.  It's funny, every class I sat with a different group! How many past classes I've sat all alone, listening to everyone else, just absorbing and never participating.  Now I'm included in conversations; I'm included in lunch invitations; I'm included in project groups.

I'm so grateful for this break, and for this last semester.  It was a really difficult semester, but it's over now.   I'll be entering my final year of college this fall.  It seems unreal; I never thought I would make it this far. One verse I've always quoted to my friend and myself is "Faithful is He who calls you, and He also will bring it to pass." from 1 Thessalonians 5:24. God has been so faithful to me this semester, and through college.  My other main verse is Jeremiah 22:11- For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. I've always believed the promises in that verse, but sometimes it seems like I'm not prospering.  Ending this semester has really given me the feeling of hope, and of a future.  I know I should believe in faith, but sometimes it is really nice to have a tangible proof that God is keeping his word! 

And to close, one of my latest favorite songs that's gotten me through a lot of tough days recently-

Diamonds-by Hawk Nelson

Here and now I'm in the fire,
In above my head
Oh, oh, oh oh, oh, oh
Being held under the pressure,
Don't know what'll be left
Oh, oh, oh oh, oh, oh
But it's here in the ashes
I'm finding treasure

He's making diamonds, diamonds
Making diamonds out of dust
He is refining in his timing
He's making diamonds out of us

I'll surrender to the power
Of being crushed by love
Oh, oh, oh oh, oh, oh
Till the beauty that was hidden
Isn't covered up
Oh, oh, oh oh, oh, oh
Oh it's not what I hoped for
It's something much better

Oh the joy of the lord
It will be my strength
When the pressure is on
He's making diamonds

He's making diamonds, diamonds
Making us rise up from the dust
He is refining in his timing
He's making diamonds out of dust
Making diamonds out of us

I won't be afraid to shine
I won't be afraid to shine
I won't be afraid to shine
Cause he's making diamonds out of dust
Making diamonds out of us

Waterproof Mascara ( so crying is ok)

*I wrote this in Denver, when I was at CancerCon at the end of April, and am finally posting it!*

I wanted to type this last night, but was a bit too tired, so here it goes.
Yesterday was the first day of sessions of Cancer Con.  I attended two sessions.
I've had a great time in Colorado.  Just being in the gorgeous outdoors, and reconnecting with so many people from last year has been awesome.

I was invited to the Stupid Side Effects session.  This past year, the side effects have really slammed me.  I've been cancer free, and am three years out from transplant (yay!) but the side effects seem to be increasing, both in number and intensity.  It's been one of the hardest things to deal with this year.  It was a small group in that session.  Probably a dozen of us, huddled around two tables.  There were AMGEN reps there, to listen in on what we said, and see how they can better serve the AYA community.  We each went around, and gave a brief synopsis of where we were before diagnosis, the diagnosis, and what we are dealing with now.  It was a very overwhelming time.  Every person shared at least one thing I was going through.  Every single person understood the fears I struggle with daily.  Most of them had had high aspirations, or were living out their dreams.  More than one said "life was perfect" before diagnosis.  And now we were here.  A tattered and bruised bunch, but still standing.  Still ready to get busy living.
I was also invited to a session called the Path to Remission, and was conducted by Hope Lab.  Everyone there was between the ages of 17-25 so it was a much closer and younger age range than some other sessions.  There were those still in treatment as well.  I met four other girls with Hodgkin's! We were tasked with writing a story, in small groups.  The other two HL girls and I formed a group, because of our diagnosis and stage (post-treatment).  We all face the same challenges-trouble breathing, joint pain, and hand neuropathy to name a few! After we created our story, we made a storyboard, and every group went around and  explained their story board.  One spoke on the hardships of roommates; another was on being disappointed when you can't do stuff with your friends, or other normal things for your age.  The third board was on being mad, and not talking to anyone.  Our board was our story-how hard it is to deal with the side effects.  The other boards had an ending.  Ours didn't because there is no end to our side effects.

I'm a very stoic person. I'm not usually very emotional.  But this entire conference, I've felt like crying.  When I see how many other people are dealing with the very same thing as me.  When I hear other stories, about not receiving the answers you want, or just getting tired of facing the daily challenges.  It's a lot to take in.  When you meet so many people who've also relapsed, or have been told there are no more options.
I realized I squish my feelings down.  I've had so many thoughts and worries this semester, but I don't ever let myself think about them.  Sometimes I wonder why I do so many things, and am crazy involved with stuff.  Last night, talking to my nurse navigator, I think I started to realize why.  I found out I relapsed with my 3month scans.  112 days after I finished treatements, that were supposed to have an 80% cure rate, I had cancer again.  I don't live in fear of the future, but I do live with a very uncertain future.  I don't know when the cancer will come back.  I am at a very high risk for multiple secondary cancers.  I have so many side effects.  Being diagnosed with the hemolytic anemia last year jolted me to the reality that there is so much that can happen to me that I don't know about.  And I think that's why I do all that I do.  I'm too busy to think about my life.  My free thinking moments I spend making lists of things I could do for events or organizations I'm involved in.  I want to have a reason I'm tired, a justification so that I don't have to wonder if perhaps there is something deeper about when I'm tired.  When I relapsed, I had been really tired.  I'd sleep all day Saturdays, just so I could function.  My talisman is that if I don't sleep on Saturdays, I won't get sick again.  I just feel like if I'm too busy, cancer can't catch me again.  And I feel like I can't stop, because if I do, everything I have will be taken away again.
Amelia and I spoke last night.  Blessings on the dear lady, who was super exhausted, but still spent more than an hour listening to me.  We had spoken earlier about how Cancer Con is at such a bad time in the semester.  I said I came because I gave it my all in the first two rounds of tests.  Once I saw I wasn't getting A's, I figured it didn't matter what I got, as long as I passed.  I hate that mentality.  I want to care more.  But I can't.  Because all my efforts, and trying to really understand the materials, and studying, and tutoring, and so much else isn't paying of.  I just came from a session on chemobrain.  The speaker said it'd only last maybe 2-3 years out of treatment, if that.  I'm over three years now.  A guy spoke up, and said it's been 8 years since he finished treatment, and yet he still had it.  It's hard.  I feel like it's gotten worse for me this semester.  Maybe it's the stress of school, or the amount of information I'm trying to remember, but I will just freeze mid-sentence.  My mind absolutely blank.  I feel like an idiot.  I used to be so quick on the draw.  I had a retort for everything.  Now I can't even remember the simplest thoughts.  I don't get good grades, and it hurts.  I was the girl who was going to make the Dean's List every semester.  Now, I'm lucky if I pass all my classes.  The speaker said chemobrain doesn't mean you loose intelligence, just means that you have concentration and memory problems.  Well I feel like I've lost my intelligence, because I cannot access it. It sucks.
Amelia said that what I'm doing is incredible.  I don't want to sound prideful, but I guess it kinda is.  Of the hundreds of survivors I've met, I've only ever met one in engineering.  He was diagnosed half way through college though.  Most cancer survivors are not in college, because it is so hard for them.  Those that are, are usually in social work, nursing, or business.  People drop out of engineering, and they don't have good excuses. I'm finishing my 4th year, and I've made it, chemobrain and all.  I guess I should be proud of myself.  But for some reason I'm not.

In our side effects group, it was a super talented group of people.  Successful business people, actors, singers, directors...everyone had their dreams plucked from them.  Last weekend, my sister and I stumbled upon a strings studio.  We went in, and I played a violin there.  I played one of the most basic concertos I ever learned- Vivaldi's A Minor.  Rachel put a 10-second video on snapchat.  Monday, my friend said "Jen you shredded on the violin!" He was shocked that I could play, and thought it sounded really good.  I realized my college friends don't know who I was pre-cancer.  They know I play keyboard at church, but they don't know that i was a choir pianist, and few know I even play violin, much less the level I was at.  It was hard. I feel like I keep making excuses for who I am now, because I feel like one day the girl I used to be will come back, with all her studiousness and musicality.  I have to realize that I am who I am now.  I'm a different person.  Sometimes I hate this new person, because of all the limitations or pain I go through.  But this is me.  It's not easy to deal with this new me, but I don't have an option.  I need to learn to accept myself, and my new normal.

Happy Easter-He Is Risen!

Most of you who have known me these last four years have read my blog posts on what a special holiday Easter is too me. This year, I had some unique experiences that showed me a different perspective on this celebration-the aspect of peace.  The second event chronologically, but first since it is easier to explain, was watching the recent movie Risen.  It's the story of a Roman military tribune, and his experiences in Jerusalem around the death of Christ, his involvement in sealing the tomb, and his search for Jesus' body and what he discovers in the end. Seeing this movie really made me realize what knowing Christ can do for a person.  rabbit trail*And it made me realize (once again) that Jesus raising from the dead was true.  I'm in engineering. I know and love science and facts.  But no matter what opposing view is presented, the clearest, most understandable explanation is that Jesus did rise from the dead. *end trail
The first event chronologically but second in my telling happened with a friend.  There was a significant crisis, and I had an active role in helping through it, so was very close to the entire situation.  But shortly after it began, I realized that there was tremendous fear in my friend's heart.  And it kinda shocked me.  I've faced the thought/chance of dying more than once, but never have I been as terrified as he was.  And I realized, that I have a peace in my heart, that the world [in general] doesn't have! I have a peace that no matter what comes my way.  That doesn't mean I don't get anxious, or worried, or even scared at times, but underneath those emotions is a trusting comfort that my God is in control of every situation.
So this Easter Sunday, do you have peace in your heart? No matter what may happen with elections, or shootings, or weather, or sickness, or anything-do you know that you have an overwhelming peace in your heart that will let you face any situation? If you have this peace, do others around you sense and see that in your daily life?
Jesus faced a really hard time in choosing to die, but he had the peace that he was in the midst of his Father's will.  One of the favorite classic hymns is "It Is Well".  My favorite memory of singing it was with my cancer support group at Parkside Church.  Every person there sang it with such conviction and happiness, yet each one there had been directly touched by cancer.  I don't know if you know the back story to that song, but the condensed version is that the author had lost a lot of investments and properties to the Great Chicago Fire.  While trying to salvage his financial affairs, he sent his wife and daughters on ahead to take their planned trip to Europe.  However, while crossing the Atlantic, the ship sank and his wife alone survived.  Later, while visiting near the sight of where his four daughters drowned, he wrote these words:

When peace like a river, attendeth my way,

When sorrows like sea billows roll;

Whatever my lot, Thou hast taught me to say

It is well, it is well, with my soul.

Refrain:

It is well, (it is well),

With my soul, (with my soul)

It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,

Let this blest assurance control,

That Christ has regarded my helpless estate,

And hath shed His own blood for my soul.

My sin, oh, the bliss of this glorious thought!

My sin, not in part but the whole,

Is nailed to the cross, and I bear it no more,

Praise the Lord, praise the Lord, O my soul!

And Lord, haste the day when my faith shall be sight,

The clouds be rolled back as a scroll;

The trump shall resound, and the Lord shall descend,

A song in the night, oh my soul! 

Hello, It's Me...for the first time this year

I write this from a warm home;  cheery lights brighten the kitchen that I'm sitting in.  My family is in the next room, with their small group Bible study- I just finished one homework, and needed to write my thoughts before I begin more homework.
Today has been a long day.  It's not quite over yet.  This week has been long, and it's only Wednesday! This month has been long...I'm really tired.
I haven't posted in a while.  Life has been very busy.  I'm all caught up in college-so excited about that!! But it is not easy.  I'm taking a whopping seventeen credit hours-my most to date.  Classes are very hard, and quite time consuming.  I don't seem to have a free moment to myself, and by Thursday my energy for the week is spent.  But I couldn't be happier.  I'm back with my year-and my wonderful friends (Sara, Jeff, Josh, Kyle and Ean).  I've made a new set of friends, that I think I'm going to keep :) (this means you - Joan, AJ, Ben, Matt, Ryan and Paul) among others.  The amount of homework is incredible, but when I'm sitting in the Mechanical Engineering lab, flanked by the guys I'm proud to call my friends, I couldn't wish for anything more.  So many times in the last few weeks I've stopped, mid-seemingly-impossible-problem, and thanked God for allowing me another chance at life, and for giving me the strength and ability to catch up to them, and to plod through  this semester together.
But sometimes life seems too good to be true.  I strongly believe the saying "If it's too good to be true, it probably isn't true."  Sometimes I worry that all this will be taken away.  That I won't be able to complete senior year with these guys.  I remember my first semester of college, and the amazing time I had.  This semester seems even more incredible than that.  And I remember the heart-wrenching pain of having to drop out second semester.  I'm really scared that it might happen again.  Sometimes I just want to freeze time as is-freeze the happy memories as we snapchat across the classroom, or try to take each other's things, or go to a range, or get Insomnia cookies, or learn about the difference between an '85 and '86 Toyota, or really just do life together.
Last Thursday was rough.  I came of three back-to-back tests.  I do. not.do.well. in back-to-back tests.  Ever.  This time was no exception.  My body ached with the changing weather (#bonemarrowprobs), my shoulder hurt (#heavybackpack), my brain seemed to be on fire (#engineering).  And then I was scrolling on Facebook before class.  And saw a tribute to a woman I met at Cancer Con.  She had a table right next to Rainbow's, and sewed "Survival Organs." Adorable little stuffed things shaped in different tumor and cell shapes.  She had her first baby at Christmas time.  She was the very picture of vitality and happiness, and youth- and suddenly she was gone.  It stung.  The wonderful thing about Cancer Con was meeting so many incredible people.  The horrible thing is that I hurt whenever one of them is gone.
To add to it, a friend I made at the Gathering Place young adult retreat, called saying her cancer had reoccurred for a third time, taking her out of a clinical trial. I know life isn't fair, but sometimes it's really hard to accept how things can go so well for some people, and not for others.  
The minute I was finished with my first round of tests, I had today to deal with.  My first day at Survivor Clinic.  As awesome as it sounds, I was terrified.  I was supposed to be in survivor clinic last year, but instead they found the hemolytic anemia, which triggered an awful steroid regiment.  I dreaded today, and what they may find.  It's really hard for me to differentiate when I'm tired from all the schoolwork, and when there may be something else going on.
Monday night at my campus Bible study, my verse for the night was from John 13:7 "Jesus [said], "What I am doing you do not understand now, but afterward you will understand." It was the best reminder, because right now there is SO much I don't understand.  I have so many questions about all the stuff that has happened/continues to happen to me.  This verse reminded me that Jesus said I won't understand right now.  I don't know when I will understand, but I can be strong in the promise that I will understand.  One of my favorite songs right now is "You Remain" by Saints.  The chorus goes "You are Undeniable.  You are God, and God you are able.  The storm will rise-So let it rise!- because we believe, that you'll remain faithful." This song has been running through my head, and in church, and on Ean's phone, for the last few days.  It has been such a comforting reminder to let the storm rise, because it gives God an opportunity to show himself faithful to me, and the others in my life.
This morning was so hard.  I had two classes, which was a good distraction, but after that I had about 30 minutes to kill before I had to go to Cleveland; blessings on the friend who allowed me to hang on their sleeve the whole time. I didn't want to go.  It took everything I had just to walk down the long hall in ASEC to leave my friends and go to my car.  I literally dragged my feet, as I didn't want to face the unknown.  And God reminded me to let the storm, if any, rise, because He is faithful.  And with that confidence, I was able to go to Cleveland.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Well, I wrote this eleven days ago.  I wanted to find out test results before I posted it, and haven't had a chance yet to do so.  I found out all my tests came back almost normal and I'm thanking God for that.

A Christmas Memory

Three years ago today I was officially diagnosed with relapsed Hodgkin's lymphoma.  Oncology clinic was only open a half day, and I remember going with my dad that Monday morning.  Even though it was Christmas Eve, life went on as usual at oncology.  I remember them presenting the various chemo options, scheduling a date for surgery for my port, and reviewing my blood work.  I remember hugging my nurse a Merry Christmas, and feeling so overwhelmed as she held me.
           That Christmas Eve, I had just finished my first, absolutely fantastic, semester of college. I had played in a string quartet at a Christmas service.  Presents were wrapped, guests were coming in to spend the holiday, and it seemed a quintessential Christmas celebration.
          But it wasn't.  Through the whole weekend I, and my family, savored every moment. Petty disputes were dismissed, and trivial mishaps ignored.  We were together. For how long, we didn't know.  I don't remember what gift I got, or what gift I gave,  but I remember being there all together.  Through Christmas day, neighbors and friends dropped by, to celebrate Christmas with us.
           Here I am, three years later.  I've just finished my seventh semester of college, and really well for me, all things considered.  I just played a string quartet service with my siblings. The presents are wrapped, and the house is ready for the impending arrival of the guests.  It's easy to get caught up in the hustle and bustle of the holidays.  Dinner guests and engagements, staff meetings and Christmas parties- life is busy. But I don't want to forget what is truly important.  What Christmas is really about.  It's about the birth of a deity, come down to man, to save us from ourselves. God gave his "only begotten son", so that we may have eternal life.
          I think the key word is gave.  God gave, and so should we. Christmas is about giving- maybe giving presents to family, but so much more than just that.  It's about giving love to the unloved. It's about giving cheer to the unhappy. It's about giving kindness to the forgotten.
This Christmas, give outside your normal giving zone.  Maybe you always give to the Salvation Army bell ringer- that's great, but perhaps it's time to go a little beyond that.  Maybe give a gift to a hurting or needy family. Buy some items of a non-profit's Amazon Wish List.  If you're short on the cash, give of your time.  Volunteer at the City Mission or Haven of Rest; cook dinner at the Ronald McDonald House. Walk the dogs at One of a Kind Pet Rescue.  Clean the home of an elderly friend.  Invite a lonely person to share your Christmas dinner.

         The weekend before that Christmas Eve, I had spent in the hospital, following a spleen biopsy.  That was one of my most memorable hospital stays.  I was there technically just for observation, so I was free to roam around.  Rachel stayed with me, and with our reindeer antlers we owned the halls. We made K-cups of Starbucks coffee, ordered all sorts of food, and happily watched Hallmark movies.  It was a special sister weekend, even if it was spent in a hospital.  At that point, I knew the cancer had returned, but didn't know the specifics.  We both knew it was a last hurrah before I would be back in the throws of treatment. And I saw Santa Claus.  I know he isn't real, and I've never believed in him.  But that Christmas, I needed something childish and fantastical to believe in.  Reality was overwhelming, so I entered the magical fairy tale of Santa Claus, and became obsessed with him. My child-life helped me Skype with Santa, a very special memory!
          But I was blessed to be able to be home for Christmas.  There are many who aren't so blessed.  They'll be spending Christmas in a hospital room.  Their four bleak walls bear no Christmas cheer.  They long for the company of their family and friends. Maybe go sing some carols, or take some small Christmas present in a fun wrapping paper. I think this Christmas carol is a fitting end:

Thou didst leave Thy throne and Thy kingly crown,

When Thou camest to earth for me;

But in Bethlehem’s home was there found no room

For Thy holy nativity.

O come to my heart, Lord Jesus,

There is room in my heart for Thee.

This Christmas, may there be room in all our hearts for the reason for Christmas, Jesus.  

Christmas 2012

Disappointment

The feeling of sadness or displeasure caused by the nonfulfillment of one's hopes or expectations.

So goes the dictionary definition of disappointment. My hopes came crashing down today.  
I've wanted to run the Akron Marathon relay team since I started at the University of Akron.  The first year, I was fresh out of chemo and radiation, but still wanted to give it a shot.  However, a mere 3 weeks weren't hardly enough to attempt a couple mile run! The next year, I was supposed to be at home for the first 2 weeks of school, after a 2 week PICU stint, but I played hooky from home and went to school. Seeing as I could barely walk when classes started, the marathon was kinda out of the question.  Last fall, came after a rough summer, as I was dealing with several stomach and endocrine issues.  So  this spring, I determined that nothing was going to stop me from preparing and participating in this college-long dream.  Looks like I'll have one more year to make that dream come true.  I started training in early summer.  I hate running or exercising in general, but envisioning the marathon and fulfilling this four-year long dream, spurred me on.  I started at walking just a mile, but gradually built it up to 4 miles, and then to running chunks of it.  I was in better shape than I've probably ever been in my life!
*insert screeching halt*
I got a cold Wednesday, and this morning was having trouble with coughing and breathing, which prompted oncology to want to see me.  Well, one chest x-ray and two breathing treatments later, they forbid me to run.  My lung situation, combined with a recently concerning cardiology situation, didn't present a good mix.  I understand their concern, and combined with other circumstances, it was the right decision.  But that didn't make the aftermath any easier.  It hurts.  I was doing a "good" thing; and it had to end like this.  The day before the race.  Not only did it get my hopes up quite high, and set me back nearly $50, it also left my team scrambling for a replacement.  Sometimes I wish that I didn't have to consider medical stuff whenever I make a decision- I just want to make a decision based on what I want to do, and not have to consider if I can physically make it.  Well, there ends that.  I've got one last year to shoot for running it while in college.  I heard this song on the radio this morning, before anything noted in this post happened. At first, it seemed weird to end with this, but the more I reflected, I realized just how much God has brought me through, and I think this really fits. Impossible, by Building 429 

You got a vision, you got a dream

But it feels a million miles away

You got your passion, you got to believe

That this is why you were made

It takes a little time to see

I said it takes a little time

Takes a little time

It takes a little time to believe

We can rise above the typical

And be anything but usual

We know, we know, we know

That there's no such thing as impossible

And nothing is unreachable

When we trust the God of miracles

We know, we know, we know

That there's no such thing as impossible

We're never given the spirit of fear

Only the power of love

We'll keep on running and not grow weak

His strength is more than enough

A dream that you hold in your hand

It's 1:30 am. Two and a half hours after I said I was going to sleep. I read a book. Actually, two books. Granted, they weren't Shakespeare or anything close, just some well written summer reading my siblings got from the library. But these are the first books I've read, in nearly four years. Since I started chemotherapy in 2012, I haven't had the concentration, mental stamina, or strong enough eyes to finish a book. 
I loved books. Many nights were spent reading: non-fiction, biographies, memoirs, novels, and mysteries were just a few of the many things I enjoyed. But cancer took that away from me. I remember trying to read a Sherlock Holmes mystery- one of my favorites to read. My eyes hurt by the end of the page, and my head throbbed with simply trying to remember the characters I once knew. It hurt me almost as much as the chemo. To lose my one true love. To be denied access to that magical land. To not be able to read. 
I'm 60% done with college. I've managed to work my way up to be able to concentrate for the 50 minute classes. Still working on anything longer. I've managed to be able to read my textbooks, and lecture notes. But this. Reading for me.  Simply for enjoyment.  It's unreal. It's incredible. It's fantastic. I feel like I've been let out of captivity. I read a book. 
I'd better get to sleep now. Time stands still for no one, and work beckons me in the morning. But I'll be floating with the exuberance of freedom- I can read once more.

A book is a dream that you hold in your hand.
–Neil Gaiman

Back to the Basics

It's been a very busy summer, but I'm glad I get a chance to write this.  It's been on my heart since last week, so I've finally gotten the time to put it down.  Last week I volunteered at the Parkside Church Green Campus VBS (Vacation Bible School).  VBS is like a summer camp for kids that usually last about a week.  I had wanted to volunteer at a VBS, but since Parkside's VBS was held during the day, I couldn't, but I was thrilled that Green's VBS was held in the evenings! At first it was a little unnerving, since I didn't know anyone at the church, but they accepted me as part of the family of God, and I was able to make and work alongside some awesome friends of all ages! I remember attending a VBS when I was five, but I have not gone since.  Now 15 years later, I got to help out with five year olds for a week! It was kinda neat, as I haven't been around little kids since I was diagnosed.  

The theme for the week was "Everest: Conquering Challenges with God's Mighty Power." Sitting in with the kids, it was encouraging to be reminded of the simple truths of God's word.  Sometimes in my Bible readings I'm looking for the "big" things God wants to tell me.  Every night that week, a different, very basic topic was introduced, in a simplistic manner.  It reminded me that how important the fundamentals of God are.  I'd like to share them with you, along with a brief bit about what each statement means for me.  

1.  God has the power to provide:  

“And God will generously provide all you need.”  2Cor. 9:8

This summer, there was a tuition increase, and my biggest scholarship was cancelled.  Thankfully, the tuition increase was repealed, and I got the scholarship back on probationary status.  However, I need to raise my GPA by .6 points this fall, which to me seems a near impossibility. This topic was a stinging reminder to me.  God is in control of everything, He will provide for school.  I don't have to worry about the money, or if my grades will be high enough.  He will GENEROUSLY provide all that I need.  

2.  God has the power to comfort

“He comforts us in all our troubles so that we can comfort others.” 2Cor 1:4

Not gonna lie, life is hard.  It's hard to get up every morning, and face the battles of trying to control my sugars, feel alright, deal with how the weather change will affect me, or so many other things.  But God is always there to comfort me, even when others don't know what is going on.  He is there to help me in all my troubles.  And like the verse says, so that we can comfort others.  Make it a point to encourage someone daily.  Maybe something as small as texting them "Have a great day", just to remind them that you and God love them. 

3.  God has the power to heal

“He heals the brokenhearted and bandages their wounds.”  Psalm 147:3

This was a big one for me.  I’ve lost the child-like faith that believes that God has the power to heal.  But I’m trying to get it back.  I’ve been so encouraged by hearing others pray with such belief that God will heal, and claiming his promises to heal.  

4.  God has the power to forgive

“But you are a God of forgiveness, gracious and merciful, slow to become angry, and rich in unfailing love.”  Nehemiah 9:17

No matter what I do, God still loves me, and will forgive me.  I've done more than my share of bad things, but I can rest in God's forgiveness.  

5.  God will love us forever.  

“So that everyone who believes in him will have eternal life.” John 3:15

This is a long term promise.  Forever.  No end.  Ever.  It's a mind-blowing thought.  But every time I feel discouraged or down, I can remember that God always has and always will love me.  

Here is a song that I've used in a prior blog post, but just seems like a fitting end to this post. 

Water you turned into wine, opened the eyes of the blind there's no one like you, none like You!

Into the darkness you shine out of the ashes we rise there's no one like you none like You!

Our God is greater, our God is stronger, God you are higher than any other.

Our God is Healer, Awesome in Power, Our God! Our God!

And if our God is for us, then who could ever stop us.

And if our God is with us, then what could stand against.

And if our God is for us, then who could ever stop us.

And if our God is with us, then what could stand against.

What could stand against.

Our God is greater, our God is stronger, God you are higher than any other.

Our God is Healer, Awesome in Power, Our God! Our God!

Dream Night

Hi Friends.  I know I haven't blogged in a while, but tonight was really special and even though I have so many other things I could be doing, I had to share a small bit of it with you.
Life's been crazy.  I'm doing ok...hopefully post more about that later.  I'm in summer classes, so life's been pretty hectic.  Today ended week 3 for me.  I only have two weeks left for my differential equations (diff eq) class, and five weeks left for my other two classes.  Today was really, really long.  The last few weeks, the time has been just right for me to study for my weekly diff eq test, and do a few assignments in my other classes.  However, next week I have two other tests and two other huge homeworks, along with my diff eq test.  I was really starting to stress about how I was going to have time for everything.  Would I be able to complete the work in time; would I be able to comprehend and remember all the material; would I have the strength to make it through another tiring week.  So. many. worrying. questions.
And then tonight happened.  I was at my oncologist Tuesday, and my Child Life Lisa handed me a flier for Dream Night, and suggested I go with the family.  Only Rachel, David, and John were available so I RSVPed for us four, and we went tonight.  it. was. magical.  Just looking at the magnanimity of the event, and all that had been thought of and provided for us, filled my heart to overflowing. I'd like to share a little bit of that magic with you, if I can.
Dream Night was held from 6-8:30, after hours at the Cleveland Metroparks Zoo.  It focus on children with serious medical illnesses or disabilities, and their families.  In the Welcome Plaza were several costumed characters, including a Minion, Tiger, Elsa & Anna, Optimus Prime & Bumblebee, Tinker Bell, Snow White, the Fairy Godmother, and many, many more, along with bubble machines.  Each character was so friendly and welcoming, and posed for pictures.  It was a special treat to see Mr. and Mrs. Webster volunteering there tonight, and their son T.J. as Stripes the Tiger! They have been a huge blessing in my life, and seeing them was a welcome surprise!
















Throughout the zoo, there was ample refreshments.  There were hot dogs for dinner, and concession stands with cotton candy, slushees, popsicles, pretzels, and water bottles! David and John had a blast eating all that sugar! Ben & Jerry's had also opened for the evening, so that was a special treat!













Near the entrance, there was a fire truck, and other large construction trucks that you could explore! Rachel and I were able to climb on the cement mixer.












We were able to go on the Outback Adventure Train, which we have never done! We were also able to go on the carousel. It was so fun to see the joy of kids in wheelchairs as they were able to ride tonight! One girl kept clapping her hands, and her face looked like it would burst with joy! The tram was also running all night.  The tram drivers were so friendly and helpful, making sure everyone was able to get where they wanted to go.





















One of the highlights of our night was getting to see Georgia and Christina Nixon, who we met at the Ronald McDonald House (RMH).  It was really fun to get to hang out with them, and meet several other RMH  residents and end our night together.



Usually I don't enjoy going to the zoo. Walking everywhere, usually in the heat, is quite tiring, and the more tired I am the grumpier I get.  Tonight was special because everything had been planned with the intention of accomodating everyone. Also, God provided a beatufiul temperature, and held of the rain!
Although I am tired, I was able to enjoy the zoo.  For two reasons.  First, the volunteers helped me to enjoy the night.  So many people helped out.  They gave up their Friday night, to dress up in a costume, or serve slushees, or drive a tram.  Each and every one of them had a big smile on, and was eager to assist in any way they could.  If you have the time, volunteer somewhere.  Find a cause you care about, and just give 2 hours out of your week to further that cause.  There is always a need for volunteers, and places are usually willing to train you to best assist them.  If you don't have the time right now, donate money. Dream night was provided at no charge thanks to the generous sponsorship of many organizations.  Whether you give time or money, remember it is more blessed to give, than to receive.
Secondly, everyone seemed to be moving at a more leisurely pace; usually I feel like people at the zoo are trying to take pictures of as many animals as possible, as fast as possible.  Today, it was about enjoying life.  Taking the time to watch the bear get up from behind the tree trunk. Enjoying the tussle of two young kangaroos. STicking out slushee colored tongues. Dancing in the plaza. RUnning after the bubbles.  I think each family there realized that life was a gift. Tonight was a night to enjoy nature, and each other. Life is a gift to us all.  No matter where you are in your life, as long as you have breath, you can find a reason to be grateful.  Take a moment and count your blessings.  Do a random act of kindness, to bless someone else's day.  No matter how hectic life may seem, be grateful you are able to do your work or school or housework.  Somewhere in a hospital is a person wishing that they could worry about work deadlines, school tests, or household messes. But they can't.  They have to worry if they'll have the strength to get out of bed; the energy to cook dinner; or if they will live. So count your blessings, and you will be encouraged.
Well it's pretty late, and I'm pretty tired, so sweet dreams :)

Hello Steroids, my old friend

Dear Steroids,

How can words even begin to express how much I hate you.  It starts with just eating you...uggh, the bitter taste that literally nothing can mask.  No amount of the horrible applesauce I try to hide you in takes away the taste.  I try to let the sharp bubbles of the diet pop, or some spicy bite of food alleviate some of the initial sting. And then so many...why can't they just make the you in the exact dosage amounts, instead of just 5,10, and 50?!? At least I only have to eat antacids with you this time, instead of all the chemo and antibiotics from treatments.

And I can't just pop you in like a normal pill. You'll upset the stomach you've already unsettled if I don't eat you with a large meal. Which brings me to my next point: the hunger. Man, try as I might, there is little else I can think of. Food, food, and more food! I could literally eat a 3-course meal, any time of night or day, I'm so hungry! I have so many cravings, and usually not for lettuce. And of course you push my sugar numbers up, so I can't even just eat what I want, when I want, without having to shoot insulin.  And all the shots have made my legs so sore and tender, not to mention a bruised mess. I hate thinking about food so much.  I feel like an animal-all I care about is what I'm going to eat for the next meal or snack. I've always loved food, but you make me obsess about it.  So much so that sometimes I just want to hate the food, but I can't cuz it's like I'm possessed by it.

And all that food doesn't come without a price.  Ten pounds literally overnight. Sure, there's a lot of water retention weight, but it still hurts.  Remember last Sunday, when the accumulated effect suddenly sprung? Woke up, and "Hello, Moonface!". On the plus side, my even chubbier cheeks look bright red and rosy!  And my skin is glowing! At least on my face.  Forget my arms, and legs, and stomach, with all their stupid stretch marks from last time.  My skin looks worse than my mom's ,who is double my age and had seven kids!  You stupid stuff, my legs are all swollen.  And my stomach. And my arms. And that sudden weight gain? Killing my joints. My ankles and elbows and knees-so. much. pain. I can barely walk they hurt so bad; let's forget about any other physical exertion. For all your strength, you've sapped mine.  You know how much I hate taking pain killers, yet I jacked up on ibuprofen just to attend a friend's wedding! You don't let me sleep from the pain. You don't let anything give me relief. I hate you so much. I'm so tired of this. Of facing the pain and side effects every. single. day.

I'm tired of feeling tired.  Of no concentration and a shortened attention span.   I couldn't even watch a 23-minute TV show without zoning out! I wasn't going to let you not let me finish this semester. With God's help and the prayers of His people I did. almost. Let me finish up this calculus this week and it'll be a wrap. Just please, please let me start and finish the summer session.  My one request.

And I'm tired of this new me. I hate lashing out at my siblings. I try not to scream every time they slam a door or yell across the room, but it doesn't always work. The noises are magnified in my head, and I can't take it. I feel like a horrible person. I hate spontaneously crying for everything.  You know what a stoic person I used to be. Why do you have to do this to me? I feel like I'm being ripped apart in every direction, all the time.

I've turned into the abominable snowman. New favorite orange dress I had to tie really tight during spring break? Just barely can zip it up. Lovely black and gold dress, that makes me look and feel really fancy? Barely bend over in it. Fun summer dress, with a BELT?! Wow, I loved that belt.  Looks like I'm six months pregnant in it. You not only broke my body, you broke my spirit when I realized I couldn't wear these clothes any more.  Don't worry, I still have the shapeless, baggy things I used to wear when I took you on treatment. The clothes that won't let the creepy crawly sensations you bring affect me too much. The loose waistbands so that my hurting stomach is somewhat comfortable. The lightweight clothes that don't look too nice, that I can afford to have drenched in sweat from the hot flashes you bring on.

I was thinking of giving that half of my closet away.  Literally was going to give it away this week! Good thing I didn't, I guess. I've been slowly working on what I like, and want to wear.  Pretty dresses in colors I like.  Different fun fabrics. Cute prints and cuts. Accessories. I know it's what's on the inside that matters, and all that, but it still feels good to look good.  I'd been working at loosing all the weight you horrible thing has made me gain over the last three years.  I'd accomplished it too! I felt good about myself.  I'd rewarded myself once I met my goal, with those nice dresses.  I was so excited about wearing them this summer. And all my t-shirts. I have quite a collection, and finally didn't look like I was a stuffed barrel in them. They actually fit! It was fun to wear them! But Good-bye. I'll leave you right where you are. Good-bye beautiful dresses.  I've worn some of you twice, I think. Probably won't get to wear you again for another year, at least if I'm lucky.

Hope you're happy steroids. Mission accomplished. 
To end on a happy note, which I really don't feel like doing right now, but I probably should.  June 23rd.  The last day of you horrible and bitter pills. Forty four more days. Then I'll be done with you for a season.  Forever, I wish. For now, I hope. 

Update-4/28/15

Hello Friends,

Just a brief update of life.  I'm home from Denver, where I had a fantastic time! A few prayer requests, if you will...

Academically:
My last calculus test is this Thursday, 4/30.
Finals-May 4,6, &7.
I'm taking an incomplete in calculus, which just means I'll finish it up a bit later.  I'll be taking the calculus final probably the week of May 13th.
I'd really like to do well on these finals.  My finals are worth 30%, 40%, and 45% in my classes other than calculus; they are also cumulative; given my reduced concentration with the steroids, I would greatly appreciate prayers that I do well on these.

Physically:
As of today, my blood counts are at a 10.9!
I will begin an 8-week steroid taper tomorrow.  The taper, and resulting withdrawal symptoms have their own horrible side-effects, that I'm not looking forward too!
Leg/foot muscle cramps/spasm-they have gotten significantly worse, as you may have read in my Denver posts.  They do not allow me much rest at night, as I wake up often with them, and the pain associated with them leaves me quite tired.  They are extremely painful, and there isn't anthing that relives them. Also, for the remainder of the day afterward, my legs are very achy and weak. Please pray these would resolve, and I'd be able to get proper rest.
General achiness-steroids are known for causing body aches, but some specific areas have been my right elbow and knee, and lower back, that have been especially intense for me.
Insulin pump-the shots before every meal have gotten really old...please pray that I would speedily be able to get an insulin pump!

In conclusion, a verse I heard on the radio last night.

The Lord is the everlasting God,

the Creator of the ends of the earth.

He will not grow tired or weary,

and his understanding no one can fathom.

29He gives strength to the weary

and increases the power of the weak.

30Even youths grow tired and weary,

and young men stumble and fall;

31but those who hope in the Lord

will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.

Isaiah 40:28-31 (emphasis mine)

Last Day in Denver!

So picking up from Saturday night...it was another long night of muscle cramps and no sleep.  My well laid plans of waking up, getting ready, having all my things packed were abruptly canceled when I woke up to banging on my door.  Nateisha nad Danielle, not seeing me at breakfast and since I wasn't responding to their numerous texts and calls, took it upon themselves to come to my room and make sure I was ok! Thankfully I awoke, and was just able to make it to my first session. 
The first session was "When Did Cancer Turn Me Into a Control Freak".  I've always been a bit of a control freak, and all cancer did was show me how little I had control over.  It was a very helpful session, and I hope to write more on it later. 
The second session I attended was "Navigating College and Cancer." It was another excellent session.  The presenter, Michele Rosenthal, drew from experience in academica, working with a college junior diagosed with Ewing's Sarcoma, and now currently volunteering at Dana-Faber to present how we should advocate for ourselves in college.  While I'm currently doing everything she said, having this information when I first started college would have been really nice. She concluded her presentation with short paragraphs written by other academians, so it was really neat to "hear" their perspectives as well on how they perceive and deal with kids with cancer.  The session also brought together a lot of us around the same age range.  About half the group was starting their masters; a quarter of the group was on medical leave, or just going to begin college, and the last quarter of us were currently in college. 
After the session ended, we grabbed the sandwhiches they had for lunch and then went to finish our packing.  Danielle and I had a check-out of noon, but Amelia had her checkout at 1PM.  She graciously allowed us to bring out things to her room, till we were ready to leave. 
After that, Danielle and Nateisha were eager to go shopping, so we girls headed out.  It was raining, so we were able to hop on the shuttle that runs down 16th Mile Mall.  I got out at a souveniour store, while they went to Forever 21.  I was able to get all my siblings t-shirts, and then we girls headed back to the hotel.  Danielle and Steve were leaving on the 12:30 shuttle, while Amelia, Nateisha and I were leaving on the 1:30 shuttle.  I got my bags and headed to the Concluding Ceremonies for a little while.  I walked in a few minutes after it had started, to Matthew Zachary playing on the piano.  He graduated college with a piano degree, and had been accepted to a masters program, when he found out he had brain cancer.  Doctors said he would never play again, and wouldn't even live past 5 years max.  It was a beautiful piece, and wonderfully executed.  Toward the end, suddenly he stopped playing and said "Never let anyone tell you you can't do something." and ended on a dramatic chord.  It was awesome.  Here he was, going on 20 years survivor, and just played the piano for over 600 attendees. One of the most inspiring performance I've ever heard.
They played a slideshow of the weekend, and then introduced Italia Ricci, who was one of the key note speakers. Unfortunately I had to leave shortly after a Q&A time with her began, but it is really cool to see all she is doing to advocate for us. 
As I went to meet Amelia and Nateisha, I overheard a lady and two gentlemen having a conversation about stupid cancer.  They were trying to figure out what it was about, and when they saw my name tag they asked me about it. I was happy to explain the movement to them, and what we are about.  Their question was what was the majority of the group, survivors or "other" people.  They were very surprised that the group was majority survivors, and that the organization and leadership are almost all survivors.  I was kinda surprised that they were surprised, but it made me realize how special this group is. 
Next we headed to the airport.  Most of the shuttle were CancerCon attendees, so it was nice to meet a few more people as we left.  At the airport, we all enjoyed some Haagen-Daaz, as a final celebration of our time at CancerCon. 
A little note about the flight back home...many of you probably read my post on the flight into Denver.  I was in a ton of pain on that flight.  Given the cramps and muscle spasms I'd had the last few nights, I was VERY nervous about the flight back home.  I had asked some of my friends and my family to pray that I would be OK on the flight. God really answererd prayers! We had all switched seats, so we could be close to each other, and I had switched to an aisle seat, so I could get out easily if necessary.  Nateisha was by the window, and then we were to have a random person in the middle.  I wasn't sure how it would be, having a random person, but we were blessed to meet Maria.  Her husband passed away from liver cancer, so she was most understanding about our own circumstanes. Also, she is an electrical engineer, and we had several fantastic conversations on engineering, pharmaceuticals, the politics of cancer, and women in engineering.  It was a very good flight, as I didn't feel too bad, and had great conversations with Maria to distract me from the pain.
We landed in Cleveland ahead of schedule. On the way out, Steve noticed David Blatt, and called out a "Hi Coach" along with congratulations on the great game. For those of you like me, who had no idea who David Blatt is, he is the coach of the Cleveland Cavaliers, and they had just defeated the Boston Celtics.
My entire family (plus Tessa!) had come to pick me up.  It was fun to talk with them on the way back home, and then divy up the loot at home.  It is always so good to be back with them.
Well, that basically sums up CancerCon! I hope to do a few more detailed posts on the sessions in the near future, as time allows. Thanks for joining me on the ride!

Denver Day 4

So for a quick study break I decided to write about Saturday.  It started with breakfast with a group of survivors 15-25, where we were to discuss friendships. This group was hosted by people trying to create resources that patients can give to their friends to educate them on how best to support the patients.  It was really cool to meet more people in a closer age range, and also to discuss this topic.  I was really shocked how every single one of us had a story of "close" friends who had abaondoned us, but also had the story of people we barely knew coming out of the woodwork, to  support and encourage us! It was cool to share our hurts together, and celebrate the friends who stuck by us.  Hopefully I'll be able to write more on  this later.
After breakfast we had a keynote session by Dan Shapiro, an author, professor, TV consultant, and survivor.  He was a fantastic speaker, as he outlined the different cancer/ill sterotypes in TV, and how that has morphed through the ages.  There was such a sense of comraderie as he showed clips, and we were all able to either laugh or cry through them together.
After that, Steve, Danielle, and Nateisha who had just come in from Cleveland went for a short walk ending in lunch. It was nice to get to know each other better, and talk about our experiences.
For the afternoon session, I went to one called "Just for Girls".  There was also a session Just for Guys, and Just for Caregivers.  It was an open forum, moderated by a therapist.  We chose a few topics to speak about, but only had time for a little more than one.  It was neat, because some people would ask questions, or share how they were struggling, and then others would answer with their own experiences.
That night, UH wanted to take all of us Cle people out for dinner.  They took us to Maggiano's, and we had a very nice evening, with a fantastic dinner.  It was a very relaxing evening to end a busy few days!
Back to my room to pack up and get ready to finish out CancerCon!

Denver Day 3

So yesterday was so incredibly ful and exciting and so much more! I'm trying to write everything before today starts, because there is so much I want to remember and I will forget!
The day actually started pretty early for me, around 4AM, when I woke up with really severe vascular cramps/muscle spasms, which cause incredible pain, and usually make me unable to move.  While I normally get them at home occasionally, these were super bad, and I  think the different environment made them worse and I couldn't use my usual tricks to get relief.  I was finally able to call my dad, who prayed with me, and then we kept talking and they went away.  I also texted  a few friends for prayer, because usually the day following the cramps I can't walk much.  Praise God it didn't hinder my day!
At 7:30 I had a focus group with Seatle Genetics phramaceuticals.  I had applied for one of their CancerCon scholarships, and although I received the scholarship from the Steve G Fondation, they asked me to still participate.  The main idea of the group was to get our input on what we liked about 4 different medicine websites we were asked to review.  They took/are taking our input on layout, content, and information to make the websites and eventally apps to our maximum liking.  It was so awesome to meet their incredible team, and see how much they cared about our input. 
The biggest thing about this group, however, is that it was a Hodgkin's group.  Every single person there had had Hoddgkin's. I think everyone of us was overwhelmed at meeting so many others with HL! I think the longest out was a guy 5 years, while there were a few still on active treatment.  We went around the room and shared our name,city, and a bit about our cancer.  So many people who had relapsed, had a BMT, same meds...wow.  Talk about an instant connection! I think at that moment I truly understood how CancerCon is bringing us together.  Seattle Genetics also had a opening "game" where we had a scenario where we had just been told we relapsed and needed a BMT.  We all had to pick a picture from a pile of postcards, and explain why we picked that picture and how it made us feel.  It was incredible to meet so many others who also understood the fears and uncertainty of that decision, but also to see their resolve and determined spirit as so many vowed to not give up, hard as it may be. Also, it was super cool to make new friends, that I was able to go to lunch, sessions, or exhibitors together.
After the focus group, I attended Living with a Blood Cancer Diagnosis, sponsored by the Lymphoma and Leukmia Society, and Lymphoma Research Foundation.  They spoke about their respective programs, and then had two doctors speak.  Dr. Jennifer Levine, from Columbia was incredible.  She spoke some about clinical trials as well as post-cancer issues.  Her presentation was rather high level, but super understandable, with clear explanations and little jargon.  Dr. Andrea Ng also spoke, about the long-term effects of treatments.  What a blessing to know my trust is in God for my hope and future, and not in her numbers because they don't look very good! The session ended with 4 different blood cancer survivors sharing their stories.  So awesome to hear how they are doing well in life now, and what they've learned from their cancers!
Then it was off to lunch.  Amelia, Dan, Danielle (all from Cleveland) and I went to lunch with Stacey, a new friend I made in the focus group.  It was another beautiful day, and we enjoyed it. When we got back, we needed to set up as Amelia is an exhibtor for RBC and Dan was conducting a research study on guys with cancer, and wanted to spread the word! After set-up, Amelia and Danielle went to the first-timer orientation, and Dan and I manned the table.  In the blood cancer session, they had mentioned a magazine that wanted to publish survivor stories.  Their table was right across from ours, so I went just to say hey I'd love to share my story.  Gwendolyn was free, and asked if she could interview me right away! It was super awesome to share my story with her, and I'll let you all know when it gets published :)
After that I went to my first-timer orientation. It started with a mega rock-paper-scisccors competition, to meet people! It was super cool to meet the welcome and steering committee.  They all shared their tip for enjoying CancerCon.  One theme was that people "get" you.  It's ok if you take your time down the stairs, or take the elevator up for just a flight.  Or have to sit down. Or so many other little things that I do because my body has taken a beating.
After orientation, the opening ceremonies began.  WOW.  So much energy. They showed a lot of video clips of how far these convetions have come (13 conventions, in Vegas and NYC since 2008). From a small group with a band to this incredible convention.  It was also time to welcome Kenny and John, who drove the stupid cancer car on a road trip around the USA, ending in Denver.  You'll see some pics of the car on IG. They segued onto the platform, in a fitting end to their 4th road trip!
Two other people spoke.  First, Alli Ward, who organized CancerCon. Her bio slide called her a cancer thriver.  She lives with cancer, and takes chemo for as long as she can, then takes a break, then continues.  You would never guess from her vitality.  What she has done is absolutely incredible.
The other person was Matt Zachary, the founder of I2Y (I'm Too Young for This) which has morphed into stupidcancer. Given just months to live after a brain tumor, he'll celebrate 20 years in December.  Hearing his incredible story, and how he took what he didn't have (other young adults, resources) and had the vision of stupid cancer...beyond incredible. I hope to share his story here at a later time.
After the opening ceremonies, we went to the exhibitor area. There are abotu 60 exhibitors. They had an exhibitor passport-get it stamped by all the exhibotrs, and you're entered into a drawing.  Danielle and I went around and completed ours, interspersed with some breaks to eat and man the RBC table. It was awesome to get to see and meet all the exhibotrs.  Therer were the usual hospital and pharmaceuticals, but there were so many other cool organizations.  There were several on cancer retretat/trips like hiking, kayaking, etc. There were a number of cancer specific group (brain, colon, breast). There were also bone marrow tranpslant groups, Immerman Angels, college scholarship group, and many others! We ended up with tons of cool free stuff, and many new friends! UH had a photo booth, so Danielle and I were taking pictures when Matt Zachary arrived.  We were thrilled when he agreed to join us for a picture! The props included word cut outs that had different sayings.  He held one that said "Who in the world is Matthew Zachary?"! We got some nice pics, and it was
fun! Danielle and I were both quite tired, as it was already 8pm, so we went to our rooms to rest.
We reconvened at 9PM, for a scavenger hunt! We had met Abi from Washington state that mornign at the RBC table.  She is just a month older than myself, and in college for nursing.  It was really fun to connect with her, and we agreed to make a scavenger hunt team.  We found two other girls, to bring us to the team minimum of 5.  May is from NYC, and works for a breast cancer non-profit. Courtney is another survivor, from California.  We were given a list of places/things we had to get pictures of. Some required the entire team to be in the pic, so someone else had to take it.  Others had fun requirements, like only 1 person from our team, and such. We had to take pictures, and email back to HQ with our team name, which was Spice Girls. The hunt took us around downtown Denver a little bit, allowing us a chance to see some of the city.  There were small groups of committee members, all dressed up, on the move and we had to find some of them to take pics. I"ll post more about it later, with pics hopefully.  The funnest part, I think, was meeting Aflac, THE REAL DUCK of AFLAC!! I knew there would be a duck, but was shocked that it was real! He was so cute, and loved looking at himself.  Made it easy to take a selfie with him, cuz he kept looking at the camera! He loved my necklace, earrings, and other sparkly stuff! For posting with the hasthag #cancerisforthebirds, Aflac donates $2/post to cancer research!
I think the most incredible thing was being with survivors.  Four out of the 5 of us had cancer.  We were a fiercely competitive group, determined to win (we'll find out later in the morning). But we had a common thread.  We were tired. We couldn't walk very well.  Stairs were very difficult for us.  We weren't going to make it dashing across the street (though we tried). But we understood.  I knew what the others were going through, and they knew what I was going through.  I can't even explain how incredible it felt.  I didn't have to hesitatnly ask, "hey mind if we find an elevator?". They were already searching for it. To go up 1 floor.  It was aweseome!
We were one very tired bunch, and I slept really well last night! Now I'm off to start a brand new day! First off, 15-25 years olds breakfast on friendship! Have a good day peeps!

Denver day 2

Hey everyone! It's been a long day and CancerCon hasn't even officially started!!
For starters, the time change had me up early. Combined with adrenaline and a huge late dinner, didn't have a great sleep last night. But it was a productive morning!
First Amelia and I registered. I got a cool Cancer Con t-shirt, a lanyard with my name and city, along with an orange tag that says first-time. Our schedules are printed on the back of our tags. I also got a registration bag filled with loot! They had thoughtfully included snacks, water bottles, notebooks, and some toys. After registering,  Amelia and I grabbed Starbucks for breakfast. All the Cancer Con people wear stupid cancer clothing, and combined with the lanyards, it's really easy to know who is here for Cancer Con and strike up conversation.
After breakfast Amelia went on a Rocky Mountain tour for the day. My first order of business was to complete home work for a Seattle Genetics pharmaceutical focus group I'll be attending tomorrow morning. They had asked us to review 4 drug websites, and provide our thoughts, comments and suggestions on improvements to these websites.
Afterwards, I went out to buy toothpaste (which I forgot) and look around a bit. Our hotel is at the start of 16th Street, which is apparently the place to be in Denver. They have a shuttle that just runs up and down the street, but it was a really pleasant morning so I walked. There are all sorts of restaurants, shopping, kiosks, benches, flower pots, and panhandlers along the way. Generally it was quite nice, and a very enjoyable walk. I caught my first glimpse of a mountain!
Back at the hotel I did some studying, painted my nails  and then rested. Today I'm feeling the altitude much more, and have been a bit breathless.
Around 3pm Steve G and Danielle arrived. Steve is a 3-time survivor, and his family foundation was one of the sponsors of the scholarship that let me come to Denver. Danielle and I had the same diagnosis  of HL 4b, and she is just 6-months out of treatment. We've spoken via social media,  but it was super awesome to finally meet her in person.  We were hungry so walked down 16th Street and found a farm fresh restaurant Modmarket. I got a chipotle steak sandwich which had an incredible aioli and free greens in it. We made a quick stop at Rite Aid because we all needed stuff. I got Epsom salts, which I forgot to buy in the morning. My nurse has been strongly recommending it for my pain, so hopefully I'll try it tomorrow.
Once we got back to the hotel, we all split up and rested. Later, Danielle came and did make up for me. She is really into it and I loved the smokey eye that she did! It was a fun girl-time thing to do!
In the evening, there was a meet and greet across the street. It was fun to talk to meet other people who'd had cancer when they were like 20s, and see them married, with careers, and doing well in life.
But my favorite part was the networking. I met Mark from Australia, who is working for AYA there , and Toby from UK. I also got to meet Matt Zachary, co-founder of stupid cancer!  It was incredible to see so many people, from across the globe, coming together to fight AYA cancer. So many people who are using their cancer experiences to fight for future cancer patients. It was just really incredible to meet them and see how they have gotten busy living!!
I'll post pics on fb now, since it is much easier for me   Good night!

Denver!!

I landed around 7pm (Denver time).  My AYA coordinator Amelia was on the same flight. We got our luggage and then went for the shuttle. Downtown Denver reminds me a lot of Cleveland. It isn't as big as I was thinking, and the layout reminds me a lot of Cleveland.
I can't wait to see the mountains. There was a storm when we flew in, and then it was dark so I haven't seen them yet. On our shuttle we met another CancerCon attendee, who started the first collegiate stupid cancer group! Amelia went straight to her room, as it was midnight Cle time by then, but I was hungry! There is like a little mall right around the corner, so I was able to get a burger from a place there. Definitely the biggest burger I have ever eaten! I hadn't eaten for 10 hours between flying and hydrating instead so I polished it all off.
Tomorrow I'll register, explore some, meet people from Cleveland, study a bit and relax.
The hotel has a huge stupid cancer logo on all the walls. It's pretty sweet. It's also really weird being in a big hotel room all by myself.
There is a huge bear looking into the convention center. I'll take a picture of it tomorrow.
Well it's late either time zone, so Ciao!