Lucky 13

 I did it again. 

Exhaustion from my two hours of sleep last night overwhelmed me as I scrolled through the Lufthansa movie selection, marking the ones I wanted for the flight. Zootopia 2 has been at the top of my list, so I happily watched that before a spot of lunch and a nap. I walked around a flight packed with my coworkers before returning and selecting another one from my bookmarked list, Audrey's Children. The name niggled in my brain as something I had heard of before and noted wanting to watch. The description stated it was about a doctor and the children she wanted to help, and the open scene stated it was based on a true story. I settled in to begin. 

And just per my luck, it was about cancer. Two days until my 13th bone marrow transplant birthday, so I decided why the heck not, could be therapeutic, and continued watching the movie. And cried I think almost the entire two hours of the movie. There's the usual heaviness that accompanies me leading up to BMT birthday, and I had the typical triggers of hearing the chemo names. And so, sitting in my airport seat, I sobbed and sobbed, oblivious to my seat mate, or colleague behind me. The tears I don't allow myself to cry in my house were bottled up, and seemed to explode as a never ending fountain. 

But there was something new today.

A sense of gratitude like I haven't had ever before. For doctors like Dr Evans who pushed the status quo to find a better way and increase the survival rates for children like me. The movie glimpses into the weight oncologists carry, and I'm crying with gratitude at my many doctors. Dr Peter's with his funny ties. Dr Ahuja telling me what’s my hurry to go to college. Dr Picone with her contagious smiles and laugh. Dr Hackney following me in survivorship. Dr Letterio with his kindness and push for research and better outcomes for us. And dang it I know I'm forgetting so many- many with shaved heads in solidarity with the children they serve. The Fowler family, for ensuring we didn't have to sit in the drab and menacingly cold hospital walls, but could enjoy a colorful space suited for our age. My beautiful nurse Ceci who was my lifeline every moment of cancer, and afterwards. A beacon of hope and kindness in hell.

I saw the children in the movie and cried for the ones who aren’t with me. The little toddlers taking their first steps in the corridor, the nurses and I cheering them on as they held the IV poles. My little Spanish friend, doing our nails together and rubbing each others bald heads. The little kid in the seat in front of me is poking his head to look at me and play with the windows shade. I hope so hard that when he's my age the survival rates are even higher and that he will never know the devastation of loosing his friends.

I see the staging system in the movie, and follow along with it. Nodular sclerosis, Stage 4b. The most advanced staging of Hodgkin's lymphoma. Two weeks to live. I see the parents in the movie. Lately, I've been thinking a lot more about mine. How do you deal with the news that your oldest daughter has two weeks to live? I will never have a biological kid, and I hope never to know the pain they went through. How to care for their other children, how to afford treatments, how to make decisions. Some decisions have affected the rest of my life, and sometimes its hard to grapple with. I remember my dad bringing his sheaves of PubMed study articles and arguing protocols with the hapless resident who drew the short straw of dealing with the Anands. But I'd like to believe that my dad's challenges made them think, and muse on if they were actually fighting the hardest to be the best damm oncologist they could be. I've seen changes in protocols since I was diagnosed, some that I've been privileged to be part off directly and I'm sure my dad indirectly as well, but all of which will have a positive impact on the next round of cancer patients. A small beacon of worth for what we went through.

The movie follows Dr Evans at CHOP, Children's Hospital of Philadelphia. A scene cut to her looking at 4 Eagles players and my throat caught, as I remembered why I had heard the movie title before. The very first Ronald McDonald House (RMH) began in Philly, with the Eagles support.  The closing credits listed some of the facts of RMH, and my heart is overflowing with the gratitude of every single person who made it possible. It played a huge role in my families life, and I can't imagine how I would have survived without the hot meals my mom or sister would walk from there when I refused to eat. Or the times my oldest brothers could walk over to watch TV together. Or the fact that I knew my dad could have a place to cook and share his love of food and my mom could have someone to talk too and my siblings could paint Easter eggs and play with dogs and practice their piano. I am an oldest child of Asian immigrants, and the weight of what I was putting my family through did and continues to hang heavy on me. RMH eased those burdens.

Last night I walked home with a friend, who I'm going on a weekend adventure with soon. I mentioned how a member of our party didn’t know my medical history, with the intent of not sharing with her as I don’t feel safe with her yet. Few on this plane know my past. My dress does reveal the Mediport scar on my chest, and some of my coworkers have celebrated my BMT birthday with me before. But others know me only for my work in Europe now. I was proudly introduced to others from their offices, or excitedly greeted by nervous ones happy to see a familiar face. My friends in Luxembourg have never seen me bald, or throwing up, or unable to walk. One has seen me lying on the floor in pain, and a few others recently saw me shutting down when my sugar dropped. But they see an active, thriving, living Jen.

I have a life now. Yes, I'm tethered to an insulin pump and will be the rest of my life. Yes, my lungs have been screaming to cooperate in the cold of the recent weeks. The 10 inch mass that once lived there having left its indelible mark on my life. But I'm alive. Due to the work of the researchers who didn't give up despite the obstacles. Due to a medical team and parents who forged a treatment path. Due to my family and friends who surrounded and supported me. Due to the Lord's incredible kindness and sovereignty.

Lucky 13. This week, I get to see coworkers from around the world, and my past roles. I'll get to see Megs and Ruth and John. I'll get to out my feet in the ocean and I'll eat taco bell and corn dogs. And I will be drinking a Shamrock Shake in support of Ronald McDonald Houses everywhere. 

Happy Easter 2022!

Happy Easter! I know it's been literal years since I wrote on this blog, but I had thoughts to write, and this felt the most appropriate medium to share. Life update coming at a later time, as I'm toying with reengaging this blog again.  But for now...thoughts on Easter this year. 

My God, my God, why have you forsaken me?

I remember my most desolate Easter weekend. 2013. In-patient for transplant. Confined to the four walls of the hospital room. Saturday was, as usual, empty of most of my family. Christina spent Saturday night with me, but left early Sunday morning for church. My family would come after the morning service. I remember feeling so alone. That day, even the nurses seemed to reduce their frequent stop-ins. Easter is the largest Christian holiday, and it was always a huge celebration at my family’s house. For years, we had many extra guests that would sometimes join for a morning service, but always for a large lunch, games, activities, and a fun day together. Growing up, I often accompanied the large and energetic choir on piano or organ, a joyful anthem to open the service. And that day was so quiet and alone.

My second sad Easter was 2020. Under lock-down, and missing out, once again, on the wonderful celebrations and worship. More recently, I often played keyboard/organ to accompany the packed auditorium for all three services at church. Michayla and I solemnly dyed all the eggs we could find in the fridge various colors, to add a burst of cheer to our fridge in the days to come. We discussed our family traditions, and each made some of our favorite Easter foods to share with each other. Tacos and the livestream service were included. I remember sitting curled in a corner of the couch, feeling as alone as I did seven years back in that hospital room.

This year Easter is once again not as I remember or wish. I have been extended several gracious invites to join for lunch, and am grateful for them. I have been preparing with a choir to sing several beautiful anthems as well as the Hallelujah Chorus tomorrow. Sadly, a bad case of allergies combined with my severely restricted lungs have prohibited me from joining, but I will still worship with them.

Even though I’m not in active cancer treatment anymore, every time I feel alone and tired, I immediately feel triggered to back in my hospital room. Just like then, the weekends still gape emptyingly before me, sitting alone in the silence. Just like then, I find myself with no desire to eat. Just like then, I wonder if I will ever be able to move forward from this space.

Last night I attended Good Friday mass with Mandy. Hearing the story leading up to the crucifixion was incredible, beginning all the way in Isaiah. Hearing how Jesus chose to give up his life. Wow. Would I make that choice? To give my life for ungrateful, stupid, unkind people like myself? It was our infirmities that he bore, our sufferings that he endured. By his stripes, we are healed. Jesus took the guilt of us all upon himself. I was struck by how many times in the reading, it came up “that the Scripture might be fulfilled.” God keeps his word. If he cared enough about seemingly tiny details like broken bones and a drink, he surely cares about the details of my life.

Today I had to drastically cut short my visit with dear Jackie, to attend to an unexpected appointment, and it resulted in another long lonely evening. I cooked some food to take tomorrow, and as is my custom in late-night-cooking, I turned on the playlist made for me by a close friend. And the song the Deep Love of Jesus came on. Underneath me, all around me, is the current of Christ’s love. I was reminded of the story of the author of O Love that will Not Let Me  Go. The loneliness he experienced. The pain. The desolation. Probably feeling somewhat like  me right now. And yet. He had the courage to remember that there is a love so much deeper and sustaining than what our hearts crave here on earth.

I began writing this during Maundy Thursday service while sitting next to Linzi, who’s welcomed me into her row at church weekly, as well as her home and heart on many occasions. God forsook Jesus. He was all alone. Weary. In pain. Sad. Overwhelmed. Feeling the feelings a billion times more than what I’ve struggled with this week.  

I remember the 2013 Easter. No one I knew on earth at that moment understood the pain I was in. And suddenly I realized that Jesus did. He became man to feel our physical and emotional pain. To feel the pressure and crushing responsibilities. To share in the sorrow of loosing people we love. To understand the fatigue of everyday life. And when it seems like not a soul on earth understands what I’m going through today, I’m reminded Jesus does.

Walking along the Charles River last night, Mandy and I reflected on how Easter coincides with spring. All things made new. Fresh life. Growth. But the cheer of springtime doesn’t erase the sadness. Mary wept for her child. The disciples and the women with them grieved the loss of a friend. Believing for the perfect ending and the hope of eternal life doesn’t erase the heaviness of death. The hope of eternal community doesn’t erase the weariness of being alone. The hope of new bodies doesn’t diminish the daily physical pain and accompanying burdens.

He has not forsaken me. He is still here. Because, as Ellie Holcomb said, I’m loved, not because of what I’ve done. Jesus chose me. He sees me. He knows me. Nothing’s gonna change His love. Don’t forget to remember you’re never alone.

“And now, my life will sing the praise, of pure atoning grace. That looked on me and gladly took my place.”

I Wish You Could See...

This past weekend I spent at my now 5^th 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 3^rd 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.

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.

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. 

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.
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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.

2nd BMT Birthday!

So today is my 2-year BMT birthday! I'll share some exciting things that my dear friends have done for me the last few days, but first I'd like to share this picture I took yesterday afternoon. 

 

I was sitting outside the Goodyear Polymer building, waiting for my friends to pick me up. There was a brisk wind blowing, which was almost cold. It lifted my hair, and blew it into my face. I was just so immensely thankful at that instant. This was my own hair. It's been forever since I've had to wipe hair out of my face. I felt the wind, and all around me I was reminded that spring is nearly here. A new season for living things is about to begin.  The greenery is visible once again.  The sky was so. very. beautifully. blue. 

I remembered back to two-years ago; I could only see this teeny little patch of sky, by craning my neck out of the window.  My world had been reduced to four drab walls.  Eventually, when I moved to Seidman I had a gorgeous view of the sky, and could see the sun setting over Cleveland every night.  But I still didn't feel the wind.  The air was always still, always tainted with the nauseating smells of food, or the metallic odors of the medications.  The only movement was the air forced into the room, from a vent atop my bed.  I remember the day I was discharged; even though it was early May, that day was close to 90°F, which to my struggling body was the perfect temperature.  I remember sitting out on the labyrinth in front of Seidman, and just feeling the gentle warm breeze cover my bald head. 

Yesterday was a perfect day.  I have two huge tests this Friday, so by perfect I do not mean easy.  I still had all my classes, got back a quiz, turned in five different homeworks, and studied for my tests.  I think I just felt so thankful for where I was.  Thankful that I had tests to study for.  Thankful that I was able to complete all that homework.  Thankful I had been able to be in class when the pop quiz was given. 

My friends Annie and Jake invited me to grab some food at our friend Cody's house, before our thermo class.  I'm so glad I went with them, and with our friend Craig.  I had my first green eggs, and delicious green waffles.  After class, Annie, Jake and I paused up on the 5th floor, by the window and looked out on the campus.  In that moment I was so thankful that I was flanked by two amazing friends; I had been so scared for thermo, as it is known to be hard, but even more scared to face it without knowing anyone.  Having Annie and Jake with me in that class has just been the most incredible thing, as we study and work together.   

After thermo I headed to my normal Tuesday evening Bible study. I was surprised to see my friend Ean there early, as he normally doesn't arrive till later. But we were just chatting, till Sharon called. As we spoke, I suddenly saw a big bunch of balloons coming down the long hallway, and I knew it was her. She had driven all the way from med school, bearing cupcakes, balloons, and Reese's, to surprise me for my 2-yr! She had been in communication with Ean, who had also notified the Bible study group. In that moment, I was so surprised and overwhelmed by my friends. Two years ago I was friends with Sharon but not very close. I knew Ean, but we weren't really friends. I would never have dreamed that Sharon would be like a sister to me, or that Ean would become such a good friend, or that I would be blessed to have a whole new group of friends through a Bible study!

 Two years ago I remember being in a hospital room. Probably puking my guts out as usual. The chemo for the week prior to my BMT was incredibly hard. Every day they were trying to wipe my entire system clean, and I felt it. I remember thinking about what would happen if the BMT didn't work. There was only a 50% chance that it would. I've met people for whom it hasn't. It was a Sunday then, and I remember wondering if I would ever again be involved in church; would I ever play an offertory again, or accompany a congregation. I remember the team who came to give me my BMT. My PA Linda, and nurse practioner Kristen, plus my oncology floor nurse, and an extra nurse. While Linda and Kristen concerned themselves with the actual administration of the cells, the nurses assisted me, as I was retching like never before, or since. They had wet washcloths, and tried to make me comfortable. My child life Angela was there, and read to my siblings from a book about BMT, and then took them to get snacks, games, and generally kept them occupied.

Two years later I'm sitting in the computer lab as I write this. I just finished three classes this morning. Next to me is Neil, my best friend Sharon's youngest brother. I was so sad to lose her to med school last fall, but Neil has become a close friend and confidante, as we travel the waters of college together, through both the ups and down, joys and sadness in our lives. I'm halfway thorough my halfway semester of college. I'm overwhelmed by how far God has brought me, and his amazing mercy and grace in preserving my life for Him!

 Pictures Milestones

 

BMT



100 Days!



1-yr BMT

 



January 2015