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.