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.

Waterproof Mascara ( so crying is ok)

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

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

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

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

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

I'm Going to Denver!

I think the title says it all.  Thank you so much to everyone who has prayed and inquired about my trip.  Friday my counts were 9.8 (I needed a 10 to be able to go), so my doctor said I could go to Denver and CancerCon! This morning my counts were 10.4, so slowly climbing up!

I leave tomorrow evening, and will return on Sunday. I intend to post pictures on here and on social media from my trip!
A few things I would greatly appreciate prayers for...

• That I'd stay healthy in Denver
• My cough would completely go away
• The steroids side-effects would diminish (I've especially been in a lot of pain)
• My sugars would be OK with the travel and changes
• I'd be OK with the higher altitude

One quick thing...on Wednesday night I had intended to attend the U college service.  I was also spending time with my friend on spring break, and it got really late, and I almost didn't go, because I was really tired. I had written my previous post that afternoon, so it was a rough day.  However, I decided to attend the service, as I would still get to hear the preaching.  I walked in to hear Pastor Josh say that God only gives good in our lives. I'd never heard it put so bluntly, and it took me several minutes to fully comprehend the impact of that. The last few weeks as so many medical and acadmeic things have come crashing down all around me it seemed like God could stop allowing so much bad in my life, and hearing that topic just so encouraged my heart. He went on to say how God isn't bothered with my asking for things, and it isn't selfish to pray that I get stuff.  His closing challenge was to ask God for three things, a big, medium, and small for that week.  I was challenged to ask for three things, but all big (to me!).   

1. That I could go to Denver.
2. That my counts would be high enough.
3. That a really bad cough I had, which also could have prevented my trip, would clear up.

By Friday, all three prayers and "big things" were answered!

And to close, a very special verse to me.  I've always read vs 11, and claimed it for myself, but today vs 12 also jumped out at me.  That I can call on God, and pray to Him, and He will listen to me.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. Jeremiah 29:11-12

Now the only thing that separates me from my trip...a huge thermodynamics exam tonight!