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.

Even If the Healing Doesn't Come

A few weeks ago, I watched the Grey's Anatomy episode for the week.  And it really hit home with some stuff I've been dealing with.  April Kepner is a talented surgeon, and grew up a devout Christian.  Through the show, we get a sense of her committed faith, and how she does "all the right things". But life hits her hard.  She fails her board exams, loses a child in stillbirth, gets a divorce, and watches so much death and trauma on the battlefield and at home. Her faith is shaken quite badly, and we see her struggling to find her way. In this episode, Eli, a dying rabbi is brought in.  He had a rare allergic reaction to medication, a very unfair and unexpected situation.  Eli draws out April's feelings, and she express her disappointment and anger at God, who could be so unfair in life, and to her, when she did everything he asked of her.  And the rabbi points out that we don't ask why when God gives us good things, only the bad ones.  And life isn't fair.  The Bible is filled with unfair situations to the people of God. Jesus himself had it pretty rough. "No one in the Bible lived a life free of suffering or injustice, so why should our own lives be any different?" 

This episode hit me pretty hard. I felt a lot like April.  I haven't done anything super bad in my life like kill someone or anything. But sometimes it seems like I've drawn the short straw.  There is so much good in my life, but sometimes it seems like the pain really just outweighs it.  And I often wonder why. I don't think I'll ever stop wondering, but there are some days that are just harder than others.  Days when I can't seem to keep up with life. Whether it be chemobrain acting up and taking me double the time to actually be able to write a report, or allergies knocking me flat on my back struggling to breathe, or even something so stupid as the rain and weather causing my knees to hurt so badly I can barely walk. 

No one tells you cancer will be with you f o r e v e r. Ending chemo or radiation or a transplant or surgery is not the end. Your life does not go back to whatever it was before.  You are forever changed- physically and mentally.  It was/is a hard realization.  Now I'm far enough out that I don't really remember my life trajectory before cancer. But I wonder what my day would be like without the pain and side effects that cancer left. I sometimes wonder if I'll ever get over my knee-jerk reaction of "the cancer is back" when I'm unusually tired or can't breathe. I wonder if I'll ever be able to smell foaming hand sanitizer and not gag. I wonder if I'll ever be able to stop dreading every doctor's appointment, and what they might find.  There's a word in the cancer community- scanxiety.  Anxiety brought on by impending medical imaging.  It's real- ask any cancer fighter. I don't think it goes away. I reached 5 years post transplant last month. Whoop dee do. I feel like I should be more excited.  Five years is a big mark. It signifies a reduced risk of the cancer returning.  But somehow I felt like a deflated balloon.  My insulin pump is not going anywhere.  Neither is the estrogen or hormone therapies. Neither is the stomach issues that are forcing me to be increasingly guarded in what I eat. Neither is the joint pain with the weather changes. I  never dreamed I'd be 23 and feel like I was trapped in an old body. It's hard. It's devastatingly hard to comprehend that this is my reality. That the stash of pill bottles on top of my fridge is never going to decrease, and same with the insulin supply inside the fridge. 

Since cancer, I never planned my life more than till the next scans.  If I was feeling courageous, I'd plan till the end of the semester. Now, my calendar is scheduled to August, and I'm being asked to block out vacation time months in advance. It's a weird and hard thing to deal with. I long to tell the scheduling assistant that I don't know what will happen in August. Maybe I'll need to take a day of for new imaging, or new vaccines.  Maybe these vaccines won't work [again] and I'll have to begin a new round, that will require additional time off.  Maybe...so. many. different. scenarios. Life is hurtling me towards planning ahead. My annual evaluation asked for my goals for the year. I now have clients I am supposed to work with for at least the next three years. Friends have asked me to visit Europe next spring. I'm looking at different life decisions, that will affect me for 5 years at the very least. And now finally I'm looking at my life.  Not 3-6 months of life, but the next 20 years of life.  I have a life now, and I'm so grateful for that. But it's daunting to think that every single day of my life is going to be a struggle. 

And that's where God comes in. We established life wasn't fair, and we can't expect a life free of suffering or injustice.  Eli tells April, "Faith wouldn't be real faith if you only believed when things were good."  I've been thinking a lot more about faith.  Recently, I shared my story at my church cancer support group.  I'm the youngest person there, and the coordinator commended me on my faith for someone so young.  I wanted to tell him it was all a sham.  I didn't feel like I had any faith.  I'm just picking up my feet and putting them down because I have to. I'm not the crying type. But that tv episode had me crying, as I realized I've been trying to get by on the good times.  Faith needs the hard times. Faith needs the struggles, and heartache, and disappointment. Without them, faith is just enjoying good fortune. The day after I watched this episode, I heard two songs on the radio, back to back. 

Sometimes all we have to hold on to // Is what we know is true of who You are
So when the heartache hits like a hurricane // That could never change who You are // And we trust in who You are
Even if the healing doesn’t come // And life falls apart // And dreams are still undone
You are God You are good // Forever faithful One // Even if the healing doesn’t come
Lord we know Your ways are not our ways // So we set our faith in who You are
Even though You reign high above us // You tenderly love us
We know Your heart // And we rest in who You are
You’re still the Great and Mighty One // We trust You always // You’re working all things for our good
We’ll sing your praise // You are God and we will bless You // As the Good and Faithful One

**This.  It doesn't matter the circumstances.  My ever changing worries/wants/desires/needs won't change the fact of all God has already done for me.  He has kept his promises.  He is forever faithful. 

It's easy to sing // When there's nothing to bring me down //But what will I say

When I'm held to the flame // Like I am right now
I know You're able and I know You can // Save through the fire with Your mighty hand
But even if You don't // My hope is You alone
They say it only takes a little faith // To move a mountain // Well good thing
A little faith is all I have, right now // But God, when You choose // To leave mountains unmovable
Oh give me the strength to be able to sing // It is well with my soul
I know You're able and I know You can // Save through the fire with Your mighty hand
But even if You don't // My hope is You alone // I know the sorrow, and I know the hurt
Would all go away if You'd just say the word // But even if You don't // My hope is You alone

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