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. 

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.