Tuesday, May 8, 2018

I Wish You Could See...

This past weekend I spent at my now 5th annual Cancer Con, a convention for young adults with cancer.  One of the things I do (since watching The Office) is try to stop and take a “snapshot” of where I am. Just a quick memory of a wonderful moment I’d like to remember.  Every year, I wish I could take all my friends and family to CancerCon, so they can see and hear and learn from our collective groups about those of us who live with the harsh reality of cancer on a daily basis. I’ve written previous posts, trying to detail every incredible moment for you all.  But this year, I realized I’ll never be able to capture it for you.  Because not everyone reading this has had cancer.  They can’t relate on the deeper level that we connect at CancerCon.  But I always wish people I know could see some of what goes on over this weekend, and this is what I wish you could see at CancerCon 2018!
I wish you could…
I wish you could…Feel my excitement in the days prior, as my mind and soul begged for a break from “reality” and putting on the brave face for everyday work. At CancerCon it’s ok to be exhausted, or leave early, or sit on the sidelines, or not share your heart. It’s all about what you want to choose to do, which is honestly one of the most refreshing things about it.
I wish you could…See and meet one of the most incredible women in the cancer advocacy and support network, Mrs. Angie Giallourakis, sitting at your gate and being on your flight.  She has made many of my CancerCon trips possible, and I am forever grateful.
I wish you could…Feel the pain in my joints and backs as I travelled through the sky.  Every flight to Denver is fraught with fidgeting as I try to adjust to the pressure in the sky and the hard plastic of the seats.
I wish you could…Feel the exhilaration of stepping into the beautiful Denver Airport, knowing that shortly you’ll be surrounded by your people
I wish you could…Hear the conversation I had with the lady on the train to downtown, as she asked why I was in town, and I got to tell her about stupidcancer and the amazing weekend ahead. One of the reasons I wear my bracelet, or hoodies, or other merch is so people will ask me questions.  This is an important community and demographic, and we need to increase awareness!
I wish you could…Meet Brooke- my roomie for the weekend, and a dear sister in Christ, that I incidentally met last CancerCon! Funny how we have to travel to Denver to meet again….
I wish you could…Catch a tiny bit of the energy on the entire 3rd floor of the Hyatt- the whole place is decked out in stupid cancer, even the hotel staff wear our merch!
I wish you could…Walk into the mixer with Brooke and I, and get waylaid three steps in by the ever-gregarious Kelly, bombastic Bryan, and quieter Claire (all fellow lymphoma buddies!)
I wish you could…Hear Clair and my conversation, as we exchange updates on our lives (her- marriage and home, me- graduation and job). One amazing thing about CancerCon is meeting the people from previous years, friending them on Facebook, and keeping up with the joys and sorrows of their life.
I wish you could…Meet fellow Cle peeps- Samantha, Steve, Tess and Margaux and then grab some good food!!
I wish you could…Play the get-to-know people games we did in our little circles, featuring our superhero moves
I wish you could…Scream in excitement as one of the new friends we meet in the group finds out an offer she made on a home was accepted! As exciting as milestones like this are, there is a whole new level of excitement for us. At one time, we weren’t sure if we would live to see another birthday, so to be able to reach “normal” milestones is over-the-moon amazing for us!
I wish you could…Sit with Brooke and I as we exchanged our cancer stories, and learned more about each other. It’s a completely different experience sharing a cancer story with another cancer buddy, as we understand the pains and struggles of chemo, radiation and other treatments.
I wish you could…Feel exhausted, as we choose to buy water at Walgreen’s (hello altitude!) and retire to our room rather than go out to the Howl at the Moon party. We don’t always have the strength to participate in everything, as much as we would like to.  It’s always a struggle to decide how much energy we have and what we want to do versus what we have the strength to do. Prioritizing our activities, and letting go of stuff we want to do, but don’t have the strength to do is hard.
I wish you could…Hear our late night conversation on the struggles we face in our jobs and lives.  Every year I have a conversation like this (bless you Amelia for the many times it’s been with you!).  We have fears and struggles no non-cancer person will ever know.  How do we deal with our daily lives, our work, our friends? How tiring cancer can be, and the emotional and mental toll of knowing the side effects and cancers can last the rest of our lives.  We’re only in our twenties!!
I wish you could…Wake up super early the next morning, because of the time zone!
I wish you could…Meet an older lady in the lobby, who stopped me to ask what is this “cancer con”? I explained it, and told her our lanyard colors. Red for survivors, blue for caregivers, green for advocates…but the specialist moment was when she leaned in for a hug, and whispered “I’m a red”.
I wish you could…Come with us to the blood cancers group, and hear the struggles of the many lymphoma and leukemia people there.  From fertility, to survivorship, to follow-up treatments, to chronic cancer, to chemo brain…this group is always poignant with emotions running high as survivors share and learn how to manage their lives post-cancer.  A theme at this session has always been creating a survivorship plan, because for the first time ever, we are surviving.  We are living to grow into adults, and middle-aged people, and the elderly.
I wish you could…Meet all the exhibitors, and see the many survivors who have started groups for advocacy, awareness and support. There are many stations to share our stories, complete surveys, and give our feedback to many groups who are trying to make cancer suck less. 
I wish you could…Attend the opening ceremonies, and feel the overwhelming sense of community.  There are 600 people in this room, who I can relate with on a deeper level than any other group of 600 people anywhere.
I wish you could…Hear the undefeatable Alli Ward, and how she turned her terminal diagnosis around and is busy living her best life.
I wish you could…Listen to Mellissa Ethridge play her guitar and sing her song “I run for life”. I’d never heard it before, but it was such a beautiful way to end the session.
I wish you could…Come with us on our scavenger hunt! Meet new friends, some from Ohio, one from Michigan, and two from Oregon joined our team!
I wish you could…Bond together as you solve the clues and take goofy pictures, while trying not to have to walk outside because it’s cold.
I wish you could…Hear the concerns voiced as we see an ambulance pull-up
I wish you could…Feel the gut-wrenching worry we each experienced as we hope our fellow cancer person is OK.
I wish you could…Eat breakfast with the Steve G AYA scholarships group! And get some awesome pictures taken!
I wish you could…Come get your hair and make-up done! This is my second year doing the makeover, and honestly, I don’t think I ever feel more beautiful than right after they are done.  Beauty students volunteer their time and talents to show some love to cancer peeps.
I wish you could…Walk into the opening session, just in time to hear the one and only Dan Shapiro.
I wish you could experience the tears of sadness and loss, as you hear his story, and relate to that first diagnosis as a thriving young person.
I wish you could experience the tears of despair, as the memories of that moment when you knew you had relapsed come rushing back to you as he shares his relapse story.  A memory you never hope to have to live through again. 
I wish you could experience the tears of sickness, as he speaks of the horrors and trauma of the various chemo and transplants. He only has to mention a drug, and heads nod everywhere, as so many understand the magnitude and long-term effects attributed to those treatments. This isn’t some dynamic speaker sharing a story- this is a fellow survivor, sharing his heart. And every word he speaks transports me right back to the very moments when my life seemed at its darkest hour.
I wish you could experience the tears of immense gratitude, as he speaks of a moment of dropping a pencil, and spilling a urine tray. And the nurse who cleaned him up, changed the sheets, and got him a new pencil.  For each horrible moment I was transported too, the memories of the amazing nurses and doctors who went above and beyond and loved me and cared for me…. there’s a reason this conference is so emotionally overwhelming!
I wish you could see all the survivors stand, as we give a round of deafening applause for the medical health professionals who took care of us.
I wish you could experience the tears of uncertainty, hope, despair, and freedom as Dan shares how he has never seen cancer as a gift, and wouldn’t mind at all if it had never happened.  We don’t get a choice, and that can suck. And it’s interesting to see how each person deals with the cards they are dealt.
I wish you could…Remember Matthew Zachary announce the “weekend of lots of tissues”. Btw, there are tissues on every table in the main hall, and boxes right next to the water jug in every room. Because we need to hydrate, and we will be crying.
I wish you could…Come hear what survivors have to say in the single ladies talk. Dating and relationships (and even the thought of them) can be so daunting. This year was honestly one of the most incredible versions of this session.  Every year, it is so inspiring to hear what others have gone through, and how they are living their lives.  There are also talks for guys and married ladies at this same time.
I wish you could…Hear a one-armed girl share her courageous story of learning to love herself
I wish you could…Eat lunch with a girl who only ate six pieces of plain penne, because she has rectal cancer and literally can’t eat anything else. Dietary restrictions are a huge part of cancer life 
I wish you could…Participate in a solo survivors group discussion, where we share the many issues we face as we deal with cancer or it’s after effects on a daily basis. What to do when your “friends” walk away, how to increase awareness, how to respond to stupid comments…
I wish you could…Meet the many people who are bald, have amputations, have braces, so many visible physical struggles. Yet, this is our safe place. No one is staring, or thinking any less.  Because while our friends have visible scars, we have scars hidden by clothes or wigs or scarves.
I wish you could…Attend a session by Dan Shapiro, where we learn what a badass does. While his 30 some points are humorous, everything he says is grounded in reality. Any outsider sitting in will probably wonder why we laugh and joke about being in the hospital, or losing control of parts of our life, or assigning victory points to every bad thing that happens, or so many other aspects of the cancer life.  If we didn’t make light of it, the pain of it would be too great a burden to bear.
I wish you could…Get all glammed up for CancerCon nights in Hollywood! And walk the red carpet, and get our picture taken by the paparazzi. And feel like a rock star for a night. And participate in the photo booth (multiple times, with all our different friend groups)
I wish you could…Dance to Party in the USA, make some s’mores, dance some more! And then sit down, because your feet hurt, your mouth is dry, you’re too tired, or so many more reasons. And then you talk to the others also sitting off to the side for the same reasons.
I wish you could…Not feel guilty for being the party pooper, because you don’t have the strength to keep going. And also, there are so many others also too tired to dance, sitting at your table. 
I wish you could…Table-dance with us. You sit in your chair, and just move your hands, because that’s all you have energy for.
I wish you could…See when the dance floor split in half, and the DJ had to get everyone off so they could fix it.
I wish you could…Say goodbye to your dancing friends and collapse into bed.  And then wake-up, then fall back asleep because your body is about to run out of fuel, from emotional and physical exhaustion.
I wish you could…Attend the session on relationships, and realize everyone struggles with communicating how they feel.
I wish you could…listen to someone comment on how much your body aches, and get “mine too” from everyone around.
I wish you could…See me shoot a quick video for stupidcancer, on why you should go to CancerCon, and how to get busy living.  Spoiler- everyone with cancer should go at least once.
I wish you could…Attend the session on dating, and commiserate with the struggle of when to tell the other person that you have had this major, life-altering, catastrophic event in your life, but yeah, tell me about yourself?
Rush to grab a packaged lunch and catch the bus and then the train and then the plane.
That’s a wrap.
Until next year. We are stupidcancer.

Monday, April 16, 2018

Even If the Healing Doesn't Come

A few weeks ago, I watched the Grey's Anatomy episode for the week.  And it really hit home with some stuff I've been dealing with.  April Kepner is a talented surgeon, and grew up a devout Christian.  Through the show, we get a sense of her committed faith, and how she does "all the right things". But life hits her hard.  She fails her board exams, loses a child in stillbirth, gets a divorce, and watches so much death and trauma on the battlefield and at home. Her faith is shaken quite badly, and we see her struggling to find her way. In this episode, Eli, a dying rabbi is brought in.  He had a rare allergic reaction to medication, a very unfair and unexpected situation.  Eli draws out April's feelings, and she express her disappointment and anger at God, who could be so unfair in life, and to her, when she did everything he asked of her.  And the rabbi points out that we don't ask why when God gives us good things, only the bad ones.  And life isn't fair.  The Bible is filled with unfair situations to the people of God. Jesus himself had it pretty rough. "No one in the Bible lived a life free of suffering or injustice, so why should our own lives be any different?" 
This episode hit me pretty hard. I felt a lot like April.  I haven't done anything super bad in my life like kill someone or anything. But sometimes it seems like I've drawn the short straw.  There is so much good in my life, but sometimes it seems like the pain really just outweighs it.  And I often wonder why. I don't think I'll ever stop wondering, but there are some days that are just harder than others.  Days when I can't seem to keep up with life. Whether it be chemobrain acting up and taking me double the time to actually be able to write a report, or allergies knocking me flat on my back struggling to breathe, or even something so stupid as the rain and weather causing my knees to hurt so badly I can barely walk. 
No one tells you cancer will be with you f o r e v e r. Ending chemo or radiation or a transplant or surgery is not the end. Your life does not go back to whatever it was before.  You are forever changed- physically and mentally.  It was/is a hard realization.  Now I'm far enough out that I don't really remember my life trajectory before cancer. But I wonder what my day would be like without the pain and side effects that cancer left. I sometimes wonder if I'll ever get over my knee-jerk reaction of "the cancer is back" when I'm unusually tired or can't breathe. I wonder if I'll ever be able to smell foaming hand sanitizer and not gag. I wonder if I'll ever be able to stop dreading every doctor's appointment, and what they might find.  There's a word in the cancer community- scanxiety.  Anxiety brought on by impending medical imaging.  It's real- ask any cancer fighter. I don't think it goes away. I reached 5 years post transplant last month. Whoop dee do. I feel like I should be more excited.  Five years is a big mark. It signifies a reduced risk of the cancer returning.  But somehow I felt like a deflated balloon.  My insulin pump is not going anywhere.  Neither is the estrogen or hormone therapies. Neither is the stomach issues that are forcing me to be increasingly guarded in what I eat. Neither is the joint pain with the weather changes. I  never dreamed I'd be 23 and feel like I was trapped in an old body. It's hard. It's devastatingly hard to comprehend that this is my reality. That the stash of pill bottles on top of my fridge is never going to decrease, and same with the insulin supply inside the fridge. 
Since cancer, I never planned my life more than till the next scans.  If I was feeling courageous, I'd plan till the end of the semester. Now, my calendar is scheduled to August, and I'm being asked to block out vacation time months in advance. It's a weird and hard thing to deal with. I long to tell the scheduling assistant that I don't know what will happen in August. Maybe I'll need to take a day of for new imaging, or new vaccines.  Maybe these vaccines won't work [again] and I'll have to begin a new round, that will require additional time off.  Maybe...so. many. different. scenarios. Life is hurtling me towards planning ahead. My annual evaluation asked for my goals for the year. I now have clients I am supposed to work with for at least the next three years. Friends have asked me to visit Europe next spring. I'm looking at different life decisions, that will affect me for 5 years at the very least. And now finally I'm looking at my life.  Not 3-6 months of life, but the next 20 years of life.  I have a life now, and I'm so grateful for that. But it's daunting to think that every single day of my life is going to be a struggle. 
And that's where God comes in. We established life wasn't fair, and we can't expect a life free of suffering or injustice.  Eli tells April, "Faith wouldn't be real faith if you only believed when things were good."  I've been thinking a lot more about faith.  Recently, I shared my story at my church cancer support group.  I'm the youngest person there, and the coordinator commended me on my faith for someone so young.  I wanted to tell him it was all a sham.  I didn't feel like I had any faith.  I'm just picking up my feet and putting them down because I have to. I'm not the crying type. But that tv episode had me crying, as I realized I've been trying to get by on the good times.  Faith needs the hard times. Faith needs the struggles, and heartache, and disappointment. Without them, faith is just enjoying good fortune. The day after I watched this episode, I heard two songs on the radio, back to back. 
Sometimes all we have to hold on to // Is what we know is true of who You are
So when the heartache hits like a hurricane // That could never change who You are // And we trust in who You are
Even if the healing doesn’t come // And life falls apart // And dreams are still undone
You are God You are good // Forever faithful One // Even if the healing doesn’t come
Lord we know Your ways are not our ways // So we set our faith in who You are
Even though You reign high above us // You tenderly love us
We know Your heart // And we rest in who You are
You’re still the Great and Mighty One // We trust You always // You’re working all things for our good
We’ll sing your praise // You are God and we will bless You // As the Good and Faithful One

**This.  It doesn't matter the circumstances.  My ever changing worries/wants/desires/needs won't change the fact of all God has already done for me.  He has kept his promises.  He is forever faithful. 
It's easy to sing // When there's nothing to bring me down //But what will I say
When I'm held to the flame // Like I am right now
I know You're able and I know You can // Save through the fire with Your mighty hand
But even if You don't // My hope is You alone
They say it only takes a little faith // To move a mountain // Well good thing
A little faith is all I have, right now // But God, when You choose // To leave mountains unmovable
Oh give me the strength to be able to sing // It is well with my soul
I know You're able and I know You can // Save through the fire with Your mighty hand
But even if You don't // My hope is You alone // I know the sorrow, and I know the hurt
Would all go away if You'd just say the word // But even if You don't // My hope is You alone

The author is so right. I know the sorrow and I know the hurt, would all go away if God would just say a word. I don't know why he does or doesn't.  April later tells the doctor who prescribed the medication that ultimately killed Eli "Some things happen, and we don't get to know why." She's so right. We don't always get the answers we so desperately search for, but that doesn't mean we sink to the depths of despair.  I was wondering where this lead. What do you do when your life seems less than perfect, and the daily struggles seemingly will never end? Eli had a final parting word for April. "The world is full of brokenness.  It's our job to put it back together again." I've seen the little sayings "everyone is fighting a battle you know nothing about". It's very true. But I think we may take it as a cliche feel-good statement. Do we actually treat people like they have their daily battles? Do we show them grace when they are short-tempered or rude or annoying to us? Everyone is hurting to some extent.  We who have the light of life must be a beacon of hope to those in this broken world.  

Tuesday, May 2, 2017

A Thousand Sleepless nights

So I normally try to have resolution to my posts.  Kinda like playing chords on a piano- don't end in discord.  But sometimes life doesn't feed you a perfect verse or song to tie it all together, with a "God's still on the throne" thing.  Sometimes life sucks and you hate the world and want to bury your sorrows in sleep and Taco Bell, while also venting to a keyboard.  Which I do a lot.  I looked the other day, and I had 5 draft posts! I read back through them.  And I remembered the moments in which I wrote them.  The stoic face I kept as my fingers flew to pour my heart onto this screen.  Sitting in the labs, with friends, by myself, so many different places, but each time with deep emotion.  So here they are.  Because life isn't golden apples and roses.  It's rotten apples and thorns a lot of the time.  And this is kinda for those who think my life's a perfect little package.  I'm only human y'all.

Unfinished Post 1. - On Friendship
Tonight I helped my friends move.  I say friends, and I've known them less than a year.  But somehow, it seems like I've known them forever, and part of me is being torn apart as they move to Chicago.  All seven of us huddled together for a final prayer.  That was just such a special moment.  Our ages ranged from 19-24. This is what I want.  I want strong friends, who can move boxes, sure, but can get in touch with God.

I still miss Adam and Lindsay.  For knowing them such a short time, they really welcomed me into their lives.  And I'll never forget that feeling of friendship in our prayer circle.  And I've been blessed to have that friendship with others on a regular basis now at school!

Unfinished Post 2. - On Goals
I've never been one for bucket lists.  They always seemed kinda cheezy to me.  But now and again, there will be things that I really want to do.  When I was first diagnosed, the only thing I wanted to do before I potentially died was to drive down our country road, with a bright blue sky, my hair waving in the breeze, in a nice car.  Stupidly corny wish, but hey...I got to do just that that summer;  as soon as I finished the drive, however, I wondered if now that I finished everything I wanted to do, I was going to die.  Since the end of my BMT, I desperately wanted to do two things that terrified me.  I hate pills and needles, but I was forced to learn to deal with it.  I wanted to do these things that maybe would not conquer my fear, but at least allow me the peace of knowing I confronted them.  I wanted to run a race, and visit Cedar Point.  I hate running (as mentioned above), and I hate heights and amusement park rides.  With a passion.  I've cried and unhappy-screamed on kiddy rides at Home Days.  Cedar Point would be my Everest.  But I conquered it.  ASME (American Society of Mechanical Engineers) Akron Student Chapter arranged a trip for a bunch of us to tour the engineering side of the park, and enjoy the rides.  It was an absolutely incredible trip.  Seeing the numerous safety precautions taken reassured me that the rides would be fine.  It was so much fun to meet several other senior mechanical engineering students, and also spend time with my friends Annie and T.J., and make new friends like AJ.  Between the group, they convinced me to go on five different rides- all of which I rode with my eyes completely shut! My body really couldn't handle any more of the intense pressure on the rides, or I would have ridden many more.  But overall, it was one of the coolest experiences I've had.  Now that the Cedar Point part of my goals had been accomplished, there was the running part, which I had anticipated would be completed tomorrow.

Haven't been back yet, but I think I'd be up for another CP trip!  Another semi-happy memory :) 

Unfinished Post 3. On hurting
The heart.  No, not the physical, four-chambered, upside-down pear shaped thing within you, though we will get around to talking about that.  I'm talking about the emotional heart, somewhere deep within you.  I always wondered where this "breaking heart" was in the emotional body.  Then, it hurt.  And suddenly, I knew where it was.  Where that twisting, inwardly pulling, aching mass of emotion lay.  I also found out where the pit of your stomach was, but that's for another time.
I should be happy.  I have been happy.  I'm caught up with my year. In college. In my senior year.  Every hour I have just looked around the room and been so caught up in the blessing of being here.  And I still am.  But my heart hurts. A little.  Actually, a lot.
All my classes this year need groups.  Groups for homework, for projects, for labs. Gone, thank God, are the days of doing the entire group work by myself, for lack of knowing anyone. But today was only slightly better than that.  I had a group- or so I thought.  I had "my people". I had multiple groups. But I was the last kid left on the team.  Minus, of course, the athletes.  Because no one wants to team up with the guys who have a crazy amount of practice to attend.  But they're my group now.  They're great guys, and I'm so grateful to them for having me.
It's hard.  I feel unwanted. Very hurt. Screwed over. Feel like damaged goods.
I'm wounded. I'm damaged, broken beyond repair.  It hurts, so much.

Yeah, it was rough.  And people can REALLY be jerks.  And hurt you over and over, even though you try to give them a 2nd chance.  And the aesthetes were awesome.  Beyond amazing.  And we've become good friends, and I'm so blessed to have gotten to know them better.  But this is a sad reality. Please don't let the cancer kid be the last one picked for a team. 

Unfinished Post 4.  On death
I've been thinking about this for a few weeks now, and finally had to take the time to write it down.  I have survivor's guilt. I survived. My friends did not. I have no idea why I'm still here, and they aren't.

Jason Jablonski.  Hockey player. US Naval Academy. Senior. Well liked and loved by all who knew him. Leukeumia, this summer. Treated at Walter Reed. I found out about him from my mom, who found out through her Air Force parent's facebook group.  They started praying for him. I heard her sad tones, about how he had a really bad lung infection. He barely lasted a day after that infection.
I never met him. But as I read the posts online, I felt like someone had punched me deep in the gut. My heart rate quickened, and I struggled to breathe. Another fantastic human being, gone.

I remembered Sam. Probably the most wonderful individual in all of time.  Funny, kinda, smart, caring, atheltic, health-conscious, people-person, fun- loving, creative. Engineer with Parker Hannifan. Hard worker. Married 6 weeks. I'll never forget the couch in Guzzetta Hall.  His sister Christina, my closest friend, was siting on the end of her long board, sliding back and forth.  He had been really sick, and she had missed a number of days of school to be with him.  Since she was back in school, I assumed he was getting better.  He had gotten better- he had received his perfect healing. I went to m violin lesson, just feeling numb.  And it seemed ok. But even now, three years later, there are days when the feeling comes back.  The breath-sucking, gut-wrenching, heart-twisting pain. They give you a pain scale at the hospital.  We've all seen it- the little faces, that go from smiling to crying.  You have to tell them which number your pain is at, from 1-10.  I've been in pain.  A lot of pain. A physically can't move or breath type-of-pain.  But I've never told a nurse my pain is at a 10.  No matter how bad my physical pain, it's always a 9 or lower.  Because a 10 is the worst pain imaginable.  And that pain doesn't come from the body- it comes from the heart. It's when your heart is twisted so tight, and you open your mouth and you want to scream, but the anguish can't come out. When you're eyes fill with tears, but you can't cry. Crying makes you feel better.  You release the tears, and 5,10,15 minutes later you feel better.  But your body doesn't let you cry, because you can't feel better.  Nothing will bring them back. You will never feel better, because you have the rest of your life to think about them.
They got it easy.  They're gone.  One of my friends always tells me "Live fast, die young," But I'm still here.  I had a lung infection too.  So bad I got admitted to the PICU.  I had a chest line, a central line, and a thousand other lines and buttons hanging off of me. I was fighting for my life. I should have, could have, would have died.

But. I. Didn't.

WHY? Why am I still here? Why does a top-notch athlete and student, who was going to serve his country, die? Why does a fantastic, friendly engineer who made friends with everyone he met die? Why did a woman who tried so hard to have a child not live past his 6 week birthday? Why did a beautiful little girl not survive endless radiation? Why did a girl, who seemed to be doing really well, suddenly not survive her transplant?
I'm still here.  I still have to get up every morning, and deal with my physical pain, limitations, and medicational roller-coasters.  I should feel lucky, or blessed, or whatever they say.
But I don't. Sometime the pain is so hard- I feel ashamed that I'm here.  I pick in my head which one I should have been switched out too.  Who would have done a better job at life, or for God. And wonder why I'm still stuck in this horrible place.

Survivor's guilt is real.  And I still deal with this, as do a lot of survivors I know.  But I'm still here because God still has work for me to do! 

Sunday, April 23, 2017

As If There Was Ever Any Doubt

Several weeks ago, a friend and I were going to a lecture in the evening.  Having some time to spare, and needing to meet our Fitbit step goals, we decided to enjoy the beautiful weather and walk around campus.  As we passed the Union, he reminded me I needed to buy my graduation tassel, and we went to the bookstore. After looking at prices, I decided that I was going to purchase my cap and gown and tassel, right then and there! I picked out the appropriate length gown, grabbed my orange engineering tassel, and paid for my purchases.  One celebratory Starbucks passion tea later, we left the Union to go to the car.  I turned to my friend, and said with purpose, excitement, and wonder “I’m going to graduate!”  I’ll never forget his reply- in a tone of perfect confidence and zero surprise he said, “As if there was ever any doubt, Jen.”
I thought about that- as if there was ever any doubt.  Maybe not for him, but the last 5 years have been filled with doubts for me! Doubts that I would be able strong enough physically to be able to walk and maintain myself through college.  Doubts that I would academically be able to keep up with the course load.  Engineering isn’t easy! Doubts that I would get sick again.  Doubts that anyone would ever hire me, given my medical history.  Doubts that I’d have friends, or people that would stick with me.
But God is greater than those doubts.  Last Sunday, the pastor preached on God’s faithfulness- past, present and future.  And I realized how true that was in my life.  It’s hard to see the good in things, when you’re in the midst of it, but when you reach the other side and look back, it’s beyond incredible to see what God has done.
Faithful you’ve been, and faithful you will be.  So here’s my faithfulness list.
  • I walk to Polsky (our farthest building), twice a week, without coughing like I’m dying.
  • I carry an 18+lb pound backpack
  • I’m in my final 4 classes, and looking to pass them all.
  • I am able to be involved in college, through several different groups, and being able to lead and grow them has just been incredible
  • I just had my 4-years post-transplant, with no evidence of any cancer!
  • I have the most incredible group of friends, who support, celebrate, and encourage me
  • I got a part-time job for the semester, that I was praying and interviewing like crazy for, and suddenly fell in my lap!
  • I get to go to CancerCon again this year! And sneak in a visit to Jo :)
  • I received the ASME Griffith-Collins award, for mechanical engineering seniors
  • I was named one of the Top 10 seniors in the Honors College
  • I have an incredible future-roomie!

I. Got. A. Job. I’ll be starting at F.M. Global this June,  as a Field Consulting Engineer! Side story: this had me kinda worried.  I worked at FM this summer, and loved it.  They're a property insurance company, who use engineers to help prevent risk, rather than other companies who use actuaries to predict risk.  So the field engineers tour the clients' plants/buildings/equipment and look at the fire protection systems, earthquake/tornado/flood hazards and other safety factors and provide recommendations to keep the place safe.  My summer co-op gave me the opportunity to tour a lot of different industry in the area, and also gave me a chance to meet a lot of new people! I loved how each day looked different than the one before, and I really loved FM and the people I worked with.  My two big concerns with it were this: one, being able to last all day.  It's tough walking on a concrete floor, climbing narrow ladders to the roof, and wearing steel-toe boots all day! But I made it through a summer, and I'm trusting God will enable me to last the days of work as well.  The other major concern was my health.  There's a lot to consider if you're going to deal with me! Co-op is one thing- hourly salary, for 12 weeks is manageable.  A regular salary, plus benefits, for an indefinite amount of time is another thing.  But God once again proved that my concerns were no match for him, when I received my offer.  It brought to mind God's promise to bless me with "hope and a future", once again. 
So yeah...that's my story.  Life's still tough.  There's a lot going on right now, that is crazy, and worrisome and horrible and taxing and really stretching me. But then I have to look back on this brief list, and many other things not on this list, and remember that He is faithful!
Closing thought from Standpoint this morning:  Nehemiah 12:43-  And on that day they offered great sacrifices, rejoicing because God had given them great joy. The women and children also rejoiced. The sound of rejoicing in Jerusalem could be heard far away.

God's given me great joy, which will be heard far and near!

Friday, January 13, 2017

Surviving College with Cancer- The Friends Edition

I remember my 2nd class ever of college- English Comp 1.  It took me a long time to walk from Calculus 1 to Comp 1, so I was late, and had the seat nearest the door and the front.  The teacher opened with one of the "everyone introduce yourself and say something interesting" things.  I gave my name, high school, and some random stuff and stopped.  And she kept looking at me, like she knew there was something more I had to say.  Then bald little me blurted out "And I just beat cancer". And someone on the other end of the classroom started clapping, and soon everyone was clapping.  And in that moment, I felt accepted into that class.  I'm still friends with two people from that class, and close friends with a third.
So this post is for you, friends of the person in college with cancer.  Maybe you knew your cancer friend before they had cancer, or maybe you met them bald in college. Either way, we are a unique group of students, and I hope you'll take the time to read how you can help us survive the college journey together with you.

Helen Keller said, "Walking with a friend in the dark is better than walking alone in the light."

Celebrate us. We've been through hell.  We deserve to be treated well.  One friend surprised me at Bible study with cupcakes and balloons for my 2 year BMT birthday. Another included me for a special snow globe photo event. One friend wrote a card that simply said she noticed how hard I worked and how cheerful I tried to be, and included a candy bar.  Simple, random acts of kindness.

Encourage us. College is hard for everyone.  Imagine yourself in your normal level of stress and work, and then think about how you would feel if you also had trouble breathing, were tired all the time, your bones hurt, the weather gave you a bad cough, you had to take 3 hours out of your busy schedule to go to the doctor every week, you had trouble remembering things or processing classes, and you were trying desperately not to get the cold literally the entire college has.  That's a little bit of what we go through. We want to keep up with you, academically and socially, but we can't.  We need to take less classes every semester.  We can't go to all the social events that you go to.  Our bodies don't have the strength or energy to last as long as you can.  We can't pull all-nighters, so let's all do our homework together earlier.  Encourage us by letting us know you saw how hard we worked for that decent grade, or by letting us know that you appreciate the effort we made on the group project.

Protect us.  Our bodies have taken a beating.  Help us out.  I know you may be a super-fit individual, who has no trouble making it up two flights of stairs.  But I'm not. My lungs only work at 40%, and my heart is also borderline abnormal function.  I'll never forget the day when I entered the building with my friends, and one of them immediately pushed the elevator button.  I had expected all of them to go up the stairs, but that small act of riding the elevator with me is forever seared in my memory. If it's cold, offer to bring us food so we don't have to go out in the weather.  Offer to get books from our cars or lockers. Offer to carry them.  We have pride, and may not let you carry them everytime, but please still ask.  I promise you, we appreciate it more than you'll ever know.

Tease us. If any of my friends read this, please don't take this as an invitation to tease me more! But don't treat us like glass.  We want to be included.  I do get miffed when the guys won't stop teasing me. But then I remember that's because they've included me.  They're accepting that I'm their equal, and I'm grateful for that.

Miss us.  I remember the semester that I missed half the classes because of the hemolytic anemia.  The first time I wasn't at class (without prior notice), I had slept in because the steroids had hit in full force.  Two minutes after the scheduled class time, my phone was blowing up with texts from my concerned classmates, on why I wasn't in my usual spot.  I was blown away by the care these lovely girls showed me.  In so many classes since, just a simple text to make sure I was ok when I wasn't in class has shown how much my classmates truly care.  Texting takes just a few moments- use those moments to show that you missed your friend, and noticed their absence.

Choose us. Maybe we aren't the sharpest anymore. And we're going to miss group meetings because we're sick or doctor appointments.  And maybe you don't think we're going to pull our weight.  Guess what? We know this too.  And we feel terrible about it.  But please pick us.  Don't wait till everyone else is on a team.  Choose us first. We already feel like we aren't going to be able to contribute 100% to your team.  Don't make us feel even worse by being the last one picked.  And you know what- we just might surprise you.  Yes we may be a little slow, but we're not stupid.  We still know things that can help you.  We'll do our research before the team meeting.  We've learned what it is to face insurmountable odds- a tough homework isn't going to faze us!

Hear us.  We're a tough lot.  We're not gonna go around begging for favors or complaining.  We won't let you know when we've had enough.  Remember, we get tired much sooner than you.  Watch if we go sit by ourselves in a corner after a little while.  Perhaps we're not eating as much as everyone.  We're getting tired.  We need to work on telling you, but we're trying to hold on to what little pride and dignity we have left.  We don't want to cut short on your fun.  So please suggest we go home. Or go somewhere quiet.

Love us. We need a little extra TLC. But we are still humans. We are still your classmates. And we are fighting like crazy to finish college with you.  Please try to understand that, and take a few minutes out of your day to remember and encourage us.  Thanks for being part of our lives.

Thursday, January 12, 2017

Surviving College after You've Survived Cancer

One hundred and twenty days.  And I will be a college graduate .

Two years ago I attended a session called "Cancer and College" at CancerCon.  I was looking for tips that could help me in my college journey, but was shocked to find that I was already doing everything the speaker recommended!
I never would have thought that I was remotely qualified to ever write on this topic, but as I near the end of my academic career, I feel like I might finally have permission to speak on it, and try to help some of my fellow AYA survivors get busy living in college!
Here are the five people most important to your success in college (in no particular order)

1. Office of Accessibility (OA)
First, let me take a moment and brag on what an absolutely incredible OA the University of Akron has!! Granted, my dad dragged me in the first time I ever went there, but from then on they are like my ever-ready back-up troops, just waiting for me to use!  The people there are always extremely kind, and go out of their way to help me.
But, back on track. I had no idea what an OA could do. So in case you have no idea, let me tell you!
First, there is a disability specialist.  He or she is your go-to point person. I send my specialist all my latest doctor letters and information, which she keeps on file.  When I'm sick, I just let her know I'm in the hospital, or whatever the situation, then she informs all my professors.  This really saves a lot of time and hassle for me when I'm not well. Any questions/problems/issues are all worked through with her!
Accommodations: So my disability specialist helped me sort out my accommodations.  It was deemed that I needed 50% extra time on tests, because of my neuropathy and chemo brain.  Because of my neuorpathy, I've also been able to type instead of hand write tests with heavy writing portions.  I've also utilized the switching classrooms accommodation, so I didn't have to walk as far between classes.  Another useful one for me was the alternative textbook format.  Textbooks can be quite heavy! The OA has most of the college textbooks on file in PDFs, that they can send you to use, so you don't have to lug a textbook around.  If they don't have it on file, they'll scan your book for you! There are so many different accommodations offered- these are just the main ones I've used!
Don't be ashamed or embarrassed to utilize these.  It was really hard for me to accept that I needed the extra test time and the help, but it has really helped me through school.

2. Dean's Office
Make yourself known to your dean! For me, this was the Dean of the Honors College, and eventually the Dean of Engineering.  As big and scary as some deans can seem, they are all there trying to promote the welfare and success of their students.  Just stop by, explain your situation, and let hem know that you are trying your best in college!
My relationship with Dean Mugler of Honors really helped me when I relapsed.  He put all my scholarship on hold while I was out of school, and send the various student groups to visit me! His office also sent me a beautiful card every week.  The engineering Dean's office was also a huge help in getting me into classes I needed, because I was off schedule with the rest of my class.
One of the biggest helps from all the Dean's Offices has been the emotional support they've provided. I received numerous cards from them when I was in school, and they helped me obtain many scholarships as well.  Just this last semester, I had to have a CT for some things, and received so many encouraging emails and words of support as I waited for the scan results.  Being surrounded by people who care about you, and are looking out for you- I can't begin to explain how much that helps me.

3. Professors
Let your professor know your situation.  I've heard both sides of this argument, but my advice is to tell them right at the beginning.  This doesn't mean you're going to get special treatment- believe me, I haven't! What it does do is help them understand when you need to miss a class, or reschedule a test.  I always wait till the 2nd class (to make sure I'm still going to take the class, and also everyone wants to talk to the professor the 1st class :[ ) then I give them a letter from my doctor (to be spoken about later) and explain my 50% time accommodation.  I'll then touch base with them before a test, as some like me to take the test in their office, others with the class and then finish the test in their office, and some in the OA.
One of my professors stopped me after class and asked me in depth about my cancer.  I was on high-dose steroids in her class, and it helped her understand why I was fidgety, had trouble concentrating, and sometimes didn't make it to class.  Another professor suggested I take an incomplete in the class- this just meant I could take the final later than the rest of the class, which allowed me more time to study, and also resulted in me being less stressed!

4. Doctors and your medical staff
You already know they're your best friends.  Use them.  My social worker wrote me a doctor letter that I give to all my professors.  It has a really brief medical history, and also outlines that they (the doctors) recommend that I stay hydrated and eat during the day, and also may need to rest through the day.  It lets the professors know that I'm not making this up!
Also, if you are ever admitted, or have appointments, try to get a doctors letter and give to your professors.  It builds your credibility, while also showing that you're still dealing with stuff medically!

5. You
You know who you used to be pre-cancer. Don't let yourself get in your way.  It was/is so easy to get discouraged in college.  It's really tough for kids who haven't had cancer! You will be busy and stressed and tired.  You'll also be trying so hard not to get the cold that's going around the dorms. And trying to get enough sleep. While still being as involved in normal college living.  It's a really tough balance. You may have to readjust your grade expectations.  You may have to learn where all the elevators on campus are.  You may have to ask your friends to carry your books. Or take notes for you when you don't make it to class.
Learn about the new you.  And don't hate that new person. That was my biggest mistake.  I tried to be the pre-cancer me, with all the grades, and activities and the put-together life.  And I got so discouraged when I failed miserably.  But that's not who I am.  I am the post-cancer Jennifer. Chemobrain is real.  Classes are extremely hard.  The cold weather means I'm going to have an exhausting cough till April.
Find what works for you.  I found my brain couldn't process a 3 hour long final.  I finally learned to ask professors if I could split the final, and they all agreed.  And my grades went up a bit.  I found that I need to be involved with people, to help me balance my academics.  And I needed to have a highly organized schedule because I didn't have the strength to pull all-nighters or the memory to do my assignments on time!
Give yourself some credit. Honestly, that's been my biggest struggle.  I was always afraid giving myself credit meant being a proud peacock.  It doesn't.  It means you have overcome impossible odds, and are still pushing through.  I've finally learnt to be proud in what I've accomplished.  I'm going to graduate in 4 months.  It's been 9 very hard and long semesters so far, and now I only have 1 left!
Lastly, find your people.  This summer I watched Grey's Anatomy, and my favorite phrase from that is "You're my person".  Find your person.  Find the one that you can call and cry with, or call and celebrate with.  That will pray for you, and support you, and encourage you.  The ones that will tease you and make fun of the way you talk. And will include you in their lunches.  And will ask if you're doing OK.
Because you absolutely cannot do college on your own.

**The following is what my freshman year chemistry professor wrote me, after reading this post.  Thanks for sharing a professor's perspective Dr. Tessier!

I read your update and I wanted to add two things to your advice, from the perspective of a professor.
- A small number of students resent OA and the services it provides. So, if possible, discuss OA concerns in private with your professor and don’t broadcast that you have received accommodations. I think this is particularly important in a large classroom setting. From my experience, the large classroom is most manageable when all students feel that I am treating everyone the same.   
- If your situation is improving, you may want to ask the professor to help wean you off any accommodations. Even open-minded people (professors writing letters of recommendation, potential employers, admission committees) may have a bit lower opinion of your abilities if your receive accommodations. I once worked with a young man to wean him off accommodations. With each exam I treated him more normally. He took the final exam with the rest of the class. When he turned in the exam, he was actually beaming. He did well and with no accommodations. I was able to write a very strong letter for him because he had made it to “normal”.  I think graduate/professional schools and employers like to hear such success stories. 

Sunday, November 20, 2016

Nothing is Wasted

A few summers ago, when I was working in Solon, I started attend a college-age group called Standpoint, based out of Parkside Church.  It was close to work, so I'd grab a light dinner, and head over to Dan and Olivia's house after work.  They always welcomed me with open arms, and eventually their kindness and love drew my entire family to Parkside.  

Late one night, after our Bible study, Olivia, a friend, and I were talking in the basement.  My friend and I were both busy with life, and struggling with various things- I don't remember the details.  But Olivia shared a promise of God with me- that he will restore everything that the locust has eaten/taken away.  And he won't just match it, he'll restore it overflowing, shaken-down, so much bigger and better than ever I could imagine.  She also shared that sometimes the restoration isn't immediate, but God always keeps his word.  

So many times through the last few years I've remembered that.  It's really hard to constantly deal with the new normal.  I want to compare myself to who I was, or try to do what I used to do, or enjoy what I could once do.  And it gets discouraging.  Really fast.  But I've just tried to remember those pesky little locusts- they may take everything you once held dear, but God is so much bigger and better then the locusts, and he always keeps his word! 

Through this semester, I've begun to see some of the restoration.  The biggest blessing has been catching up to my class.  I didn't think that dream would ever become reality, especially as it meant extra classes, extra semester, and a ton of extra work! But God has been faithful, and I'm all caught up! 

That being said...I've been battling a cold the last few weeks.  Whenever I get a cold, my body has a lot of difficulty just functioning.  Plus I get a really bad cough with the cold weather.  Between feeling horrible, and being super crazy busy with school right now, I've been feeling really discouraged.  On the way home from church this afternoon, I heard the song "Nothing is Wasted". I've included the words below.  I'm at school working on a huge presentation for tomorrow right now, with the song on repeat.  It's such a calming reminder that God won't waste the seemingly wasted time with cancer.  

Whatever the locusts are eating in your life right now, nothing is wasted. 

You know my every need
You see my poverty
You are enough for me, Jesus
You gave the blind man sight
You raised the dead to life
You've done the same for me, Jesus

You are loving, You are wise
There is nothing in my life You cannot revive
You are loving, You are wise
There is nothing too hard for our God

Your word inside of me
My strength, my everything
My hope will always be Jesus
Your breath inside my lungs
You're worthy of my trust
You will forever be Jesus

You are loving, You are wise
There is nothing in my life You cannot revive
You are loving, You are wise
There is nothing too hard for our God

Nothing is wasted
You work all things for good
Nothing is wasted
Your promise remains
Forever You reign

Your promise remains
Forever You reign
Your promise remains
Forever You reign

Saturday, June 4, 2016

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.

Sunday, March 27, 2016

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.

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! 

Sunday, March 13, 2016

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.