tag:blogger.com,1999:blog-63816816081796543582024-03-13T10:51:24.076-04:00Jen's JourneyDiary of a tough girl; follow along on her cancer journey (Jeremiah 29:11)Jenhttp://www.blogger.com/profile/09345744066650316331noreply@blogger.comBlogger107125tag:blogger.com,1999:blog-6381681608179654358.post-67117754461003434602023-02-19T19:40:00.005-05:002023-02-19T22:57:42.699-05:00Pilgrimage to Troldhaugen- 10 yr BMT reflections<p> I cried trudging up the hills alone. For me, and the life
I'll never have. For Kathleen, and her life ended too soon. The walk was
silent, save for the crunch of my boots on the snow and the trickling water
dripping off the giant stone faces, seeming to sob with me. The few heads I saw
turned curiously towards me, as I walked through quiet neighborhoods, a brown
stranger in their tranquil place.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">But I didn’t care about anything else, because this walk was
for me. I could walk 15 min to a bus stop, find the right bus and buy tickets in
a foreign country, with entirely non-English speaking people, and trudge
uphill another 20 min after. My lungs did it. My navigating brain did it. My
heart did it. <o:p></o:p></p>
<p class="MsoNormal">My eyes overflowed the entire house tour too. <span style="mso-spacerun: yes;"> </span>The house empty of children, except for the
painting. The mutual love between Nina and Edvard Grieg. The respect. The
commitment despite his poor health. <o:p></o:p></p>
<p class="MsoNormal">Today was a pilgrimage: visiting a site I'd long dreamed
off, to complete one more step in my grieving process. My pilgrimage took me to
Troldhaugen. <o:p></o:p></p>
<p class="MsoNormal">I wish I could adequately convey what this visit meant to
me. The beautiful fjords, the tranquil water, the bracing air. The best of all
Norway had to offer, complete with the music of the land. I remember the heart
wrenching disappointment of not being able to compete in my music competitions,
and the sadness of not performing well in auditions due to the neuropathy from
chemo. But i was determined music would not leave my life. When I relapsed and knew
I'd be inpatient, i spoke with the Rainbow Babies and Children’s hospital music
therapist and obtained a keyboard for the duration. I spoke to my piano teacher Kathleen and asked her for a new challenge: I wanted to learn a piece of music during
transplant. She returned to me with <i>Wedding Day at Troldhaugen</i>.
Carefully chosen to be interesting enough for a challenge yet simple enough not
to overwhelm me, and cheerful enough to lift my spirits every time I played the
bouncy notes. She shared with me how Grieg had an escape route if he saw
visitors and wasn't up for it, as well how he struggled with poor health as
well. I remember the day she arrived bearing her gift: printed music in a
binder, protected sleeves, and the fingerings already penciled in. <o:p></o:p></p>
<p class="MsoNormal">I've learned a lot of music in my day, but this piece was
different. I learned it at my worst possible physical state, and it was for me.
I've never played it post-cancer. It seems almost sacred to try to. <o:p></o:p></p>
<p class="MsoNormal">Hiking to Troldhaugen, standing looking at the incredible
views that inspired Grieg’s music, and breathing the bracing cold air, I felt
overwhelmed with gratitude. To be here was a dream come true. I only wish I
could share my experiences with Kathleen, but I'm forever grateful that she
introduced me to this amazing music. <o:p></o:p></p>
<p class="MsoNormal">It's been more than a month since, and still, I think of
this walk often. Ten years post-transplant looms in one month. And then?
Another 1 year, 10 year or 50? I don't know. But this is now. This is life,
more abundantly. <o:p></o:p></p>
<p class="MsoNormal">And the music hasn’t left my life. Yesterday, I played <i>Blessed
Assurance</i> unexpectedly accompanied by a pastor with a rich tenor voice. A
reminder that even if my hands don’t work like I remember them to, the music in
my heart can never be dimmed. <o:p></o:p></p><p class="MsoNormal"><i>To celebrate 10 years, I'm trying to raise $10,000 for an organization I'm involved with and believe in. Please consider contributing at this link, thank you! </i></p><p class="MsoNormal"><i><a href="https://www.classy.org/campaign/raising-10k-for-my-10th-transplant-birthday/c466635">Jen's 10 yr fundraiser</a></i></p>Jenhttp://www.blogger.com/profile/09345744066650316331noreply@blogger.com4tag:blogger.com,1999:blog-6381681608179654358.post-79847921081906989812022-04-16T23:27:00.006-04:002022-04-16T23:27:58.520-04:00Happy Easter 2022!<p>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. </p><p class="MsoNormal"><i>My God, my God, why have you forsaken me? <o:p></o:p></i></p>
<p class="MsoNormal">I remember <a href="https://diaryofatoughgirl.blogspot.com/2013/03/happy-easter.html" target="_blank">my most desolate Easter weekend</a>. 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. <o:p></o:p></p>
<p class="MsoNormal">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.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">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.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">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.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">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? <i>It
was our infirmities that he bore, our sufferings that he endured. By his stripes,
we are healed. </i>Jesus took the guilt of us all upon himself. I was struck by how
many times in the reading, it came up “t<i>hat the Scripture might be fulfilled.</i>”
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.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">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. <i>Underneath me, all around me, is the
current of Christ’s love</i>. 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.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">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. </p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">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.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">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.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">He has not forsaken me. He is still here. Because, as Ellie Holcomb said,<i> 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.</i></p><p class="MsoNormal">“And now, my life will sing the praise, of pure atoning grace.
That looked on me and gladly took my place.”</p><p class="MsoNormal"><o:p></o:p></p>Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-71697281570800652022018-05-08T19:36:00.002-04:002018-05-08T19:36:33.570-04:00I Wish You Could See...<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
This past weekend I spent at my now 5<sup>th</sup> 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!<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
I wish you could…<u></u><u></u></div>
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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.<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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.<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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.<u></u><u></u></div>
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I wish you could…Feel the exhilaration of stepping into the beautiful Denver Airport, knowing that shortly you’ll be surrounded by your people<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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!<u></u><u></u></div>
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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….<u></u><u></u></div>
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I wish you could…Catch a tiny bit of the energy on the entire 3<sup>rd</sup> floor of the Hyatt- the whole place is decked out in stupid cancer, even the hotel staff wear our merch!<u></u><u></u></div>
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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!)<u></u><u></u></div>
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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.<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
I wish you could…Meet fellow Cle peeps- Samantha, Steve, Tess and Margaux and then grab some good food!!<u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
I wish you could…Play the get-to-know people games we did in our little circles, featuring our superhero moves<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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!<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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.<u></u><u></u></div>
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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.<u></u><u></u></div>
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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!!<u></u><u></u></div>
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I wish you could…Wake up super early the next morning, because of the time zone!<u></u><u></u></div>
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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”.<u></u><u></u></div>
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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.<u></u><u></u></div>
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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. <u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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.<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
I wish you could…Hear the undefeatable Alli Ward, and how she turned her terminal diagnosis around and is busy living her best life.<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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.<u></u><u></u></div>
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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!<u></u><u></u></div>
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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.<u></u><u></u></div>
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I wish you could…Hear the concerns voiced as we see an ambulance pull-up<u></u><u></u></div>
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I wish you could…Feel the gut-wrenching worry we each experienced as we hope our fellow cancer person is OK.<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
I wish you could…Eat breakfast with the Steve G AYA scholarships group! And get some awesome pictures taken!<u></u><u></u></div>
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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.<u></u><u></u></div>
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I wish you could…Walk into the opening session, just in time to hear the one and only Dan Shapiro.<u></u><u></u></div>
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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.<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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. <u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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.<u></u><u></u></div>
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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!<u></u><u></u></div>
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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.<u></u><u></u></div>
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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.<u></u><u></u></div>
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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.<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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.<u></u><u></u></div>
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I wish you could…Hear a one-armed girl share her courageous story of learning to love herself<u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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 <span style="font-family: "Segoe UI Emoji", sans-serif;">☹</span><u></u><u></u></div>
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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…<u></u><u></u></div>
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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.<u></u><u></u></div>
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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.<u></u><u></u></div>
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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)<u></u><u></u></div>
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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.<u></u><u></u></div>
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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. <u></u><u></u></div>
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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.<u></u><u></u></div>
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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.<u></u><u></u></div>
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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.<u></u><u></u></div>
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I wish you could…Attend the session on relationships, and realize everyone struggles with communicating how they feel.<u></u><u></u></div>
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I wish you could…listen to someone comment on how much your body aches, and get “mine too” from everyone around.<u></u><u></u></div>
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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.<u></u><u></u></div>
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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?<u></u><u></u></div>
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Rush to grab a packaged lunch and catch the bus and then the train and then the plane.<u></u><u></u></div>
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That’s a wrap.<u></u><u></u></div>
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Until next year. We are stupidcancer.<u></u><u></u></div>
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Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-6381681608179654358.post-13478929888955498572018-04-16T23:30:00.000-04:002018-04-16T23:30:05.385-04:00Even If the Healing Doesn't Come<br />
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<span style="color: black;">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?" <o:p></o:p></span></div>
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<span style="color: black;">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. <o:p></o:p></span></div>
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<span style="color: black;">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. <o:p></o:p></span></div>
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<span style="color: black;">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. <o:p></o:p></span></div>
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<span style="color: black;">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. <o:p></o:p></span></div>
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<span style="background: white; color: #222222; font-family: "Arial Unicode MS",sans-serif;">Sometimes all we have to hold on to // Is what we know
is true of who You are<br />
</span><span style="color: black; font-family: "Arial Unicode MS",sans-serif;"><span jsname="YS01Ge">So when the heartache hits like a hurricane // </span><span jsname="YS01Ge">That could never change who You are // </span><span jsname="YS01Ge">And
we trust in who You are<br />
</span><span jsname="YS01Ge">Even if the healing doesn’t come // </span><span jsname="YS01Ge">And life falls apart // </span><span jsname="YS01Ge">And
dreams are still undone<br />
</span><span jsname="YS01Ge">You are God You are good // </span><span jsname="YS01Ge">Forever
faithful One // </span><span jsname="YS01Ge">Even if the healing</span><span jsname="YS01Ge"> doesn’t come<br />
</span><span jsname="YS01Ge">Lord we know Your ways are not our ways // </span><span jsname="YS01Ge">So we set our faith in who You are<br />
</span><span jsname="YS01Ge">Even though You reign high above us // </span><span jsname="YS01Ge">You tenderly love us<br />
</span><span jsname="YS01Ge">We know Your heart // </span><span jsname="YS01Ge">And
we rest in who You are<br />
</span><span jsname="YS01Ge">You’re still the Great and Mighty One // </span><span jsname="YS01Ge">We trust You always // </span><span jsname="YS01Ge">You’re
working all things for our good<br />
</span><span jsname="YS01Ge">We’ll sing your praise // </span>You are God
and we will bless You // As the Good and Faithful One<br />
</span><span style="color: black;"><br /></span></div>
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<span style="color: black;">**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. </span></div>
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<span jsname="YS01Ge" style="font-family: "Arial Unicode MS", sans-serif;">It's easy to sing // </span><span jsname="YS01Ge" style="font-family: "Arial Unicode MS", sans-serif;">When there's
nothing to bring me down //</span><span jsname="YS01Ge" style="font-family: "Arial Unicode MS", sans-serif;">But what will I say</span></div>
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<span style="color: black; font-family: "Arial Unicode MS",sans-serif;"><span jsname="YS01Ge">When I'm held to the flame // </span><span jsname="YS01Ge">Like I am right now<br />
</span><span jsname="YS01Ge">I know You're able and I know You can // </span><span jsname="YS01Ge">Save through the fire with Your mighty hand<br />
</span><span jsname="YS01Ge">But even if You don't // </span><span jsname="YS01Ge">My
hope is You alone<br />
</span><span jsname="YS01Ge">They say it only takes a little faith // </span><span jsname="YS01Ge">To move a mountain // </span><span jsname="YS01Ge">Well good
thing<br />
</span><span jsname="YS01Ge">A little faith is all I have, right now // </span><span jsname="YS01Ge">But God, when You choose // </span><span jsname="YS01Ge">To
leave mountains unmovable<br />
</span><span jsname="YS01Ge">Oh give me the strength to be able to sing // </span><span jsname="YS01Ge">It is well with my soul<br />
</span><span jsname="YS01Ge">I know You're able and I know You can // </span><span jsname="YS01Ge">Save through the fire with Your mighty hand<br />
</span><span jsname="YS01Ge">But even if You don't // </span><span jsname="YS01Ge">My
hope is You alone // </span><span jsname="YS01Ge">I know the sorrow, and I
know the hurt<br />
</span><span jsname="YS01Ge">Would all go away if You'd just say the word // </span><span jsname="YS01Ge">But even if You don't // </span><span jsname="YS01Ge">My hope
is You alone</span></span><span style="color: black;"><o:p></o:p></span></div>
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<span style="color: black;"><br /></span></div>
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<span style="color: black;">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. </span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
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<br />Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-6381681608179654358.post-37162319915982727952017-05-02T22:28:00.005-04:002017-05-02T22:28:34.694-04:00A Thousand Sleepless nightsSo I normally try to have resolution to my posts. Kinda like playing chords on a piano- don't end in discord. But sometimes life doesn't feed you a perfect verse or song to tie it all together, with a "God's still on the throne" thing. Sometimes life sucks and you hate the world and want to bury your sorrows in sleep and Taco Bell, while also venting to a keyboard. Which I do a lot. I looked the other day, and I had 5 draft posts! I read back through them. And I remembered the moments in which I wrote them. The stoic face I kept as my fingers flew to pour my heart onto this screen. Sitting in the labs, with friends, by myself, so many different places, but each time with deep emotion. So here they are. Because life isn't golden apples and roses. It's rotten apples and thorns a lot of the time. And this is kinda for those who think my life's a perfect little package. I'm only human y'all. <br />
<br />
<b>Unfinished Post 1. - On Friendship</b><br />
Tonight I helped my friends move. I say friends, and I've known them less than a year. But somehow, it seems like I've known them forever, and part of me is being torn apart as they move to Chicago. All seven of us huddled together for a final prayer. That was just such a special moment. Our ages ranged from 19-24. This is what I want. I want strong friends, who can move boxes, sure, but can get in touch with God.<br />
<br />
Follow-up<br />
<i>I still miss Adam and Lindsay. For knowing them such a short time, they really welcomed me into their lives. And I'll never forget that feeling of friendship in our prayer circle. And I've been blessed to have that friendship with others on a regular basis now at school!</i><br />
<br />
<b>Unfinished Post 2. - On Goals</b><br />
I've never been one for bucket lists. They always seemed kinda cheezy to me. But now and again, there will be things that I really want to do. When I was first diagnosed, the only thing I wanted to do before I potentially died was to drive down our country road, with a bright blue sky, my hair waving in the breeze, in a nice car. Stupidly corny wish, but hey...I got to do just that that summer; as soon as I finished the drive, however, I wondered if now that I finished everything I wanted to do, I was going to die. Since the end of my BMT, I desperately wanted to do two things that terrified me. I hate pills and needles, but I was forced to learn to deal with it. I wanted to do these things that maybe would not conquer my fear, but at least allow me the peace of knowing I confronted them. I wanted to run a race, and visit Cedar Point. I hate running (as mentioned above), and I hate heights and amusement park rides. With a passion. I've cried and unhappy-screamed on kiddy rides at Home Days. Cedar Point would be my Everest. But I conquered it. ASME (American Society of Mechanical Engineers) Akron Student Chapter arranged a trip for a bunch of us to tour the engineering side of the park, and enjoy the rides. It was an absolutely incredible trip. Seeing the numerous safety precautions taken reassured me that the rides would be fine. It was so much fun to meet several other senior mechanical engineering students, and also spend time with my friends Annie and T.J., and make new friends like AJ. Between the group, they convinced me to go on five different rides- all of which I rode with my eyes completely shut! My body really couldn't handle any more of the intense pressure on the rides, or I would have ridden many more. But overall, it was one of the coolest experiences I've had. Now that the Cedar Point part of my goals had been accomplished, there was the running part, which I had anticipated would be completed tomorrow.<br />
<br />
Follow-up:<br />
<i>Haven't been back yet, but I think I'd be up for another CP trip! Another semi-happy memory :) </i><br />
<br />
<b>Unfinished Post 3. On hurting</b><br />
The heart. No, not the physical, four-chambered, upside-down pear shaped thing within you, though we will get around to talking about that. I'm talking about the emotional heart, somewhere deep within you. I always wondered where this "breaking heart" was in the emotional body. Then, it hurt. And suddenly, I knew where it was. Where that twisting, inwardly pulling, aching mass of emotion lay. I also found out where the pit of your stomach was, but that's for another time.<br />
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I should be happy. I have been happy. I'm caught up with my year. In college. In my senior year. Every hour I have just looked around the room and been so caught up in the blessing of being here. And I still am. But my heart hurts. A little. Actually, a lot.</div>
<div>
All my classes this year need groups. Groups for homework, for projects, for labs. Gone, thank God, are the days of doing the entire group work by myself, for lack of knowing anyone. But today was only slightly better than that. I had a group- or so I thought. I had "my people". I had multiple groups. But I was the last kid left on the team. Minus, of course, the athletes. Because no one wants to team up with the guys who have a crazy amount of practice to attend. But they're my group now. They're great guys, and I'm so grateful to them for having me.</div>
It's hard. I feel unwanted. Very hurt. Screwed over. Feel like damaged goods.<br />
I'm wounded. I'm damaged, broken beyond repair. It hurts, so much.<br />
<br />
Follow-up:<br />
<i>Yeah, it was rough. And people can REALLY be jerks. And hurt you over and over, even though you try to give them a 2nd chance. And the aesthetes were awesome. Beyond amazing. And we've become good friends, and I'm so blessed to have gotten to know them better. But this is a sad reality. Please don't let the cancer kid be the last one picked for a team. </i><br />
<br />
<b>Unfinished Post 4. On death</b><br />
I've been thinking about this for a few weeks now, and finally had to take the time to write it down. I have survivor's guilt. I survived. My friends did not. I have no idea why I'm still here, and they aren't.<br />
<br />
Jason Jablonski. Hockey player. US Naval Academy. Senior. Well liked and loved by all who knew him. Leukeumia, this summer. Treated at Walter Reed. I found out about him from my mom, who found out through her Air Force parent's facebook group. They started praying for him. I heard her sad tones, about how he had a really bad lung infection. He barely lasted a day after that infection.<br />
I never met him. But as I read the posts online, I felt like someone had punched me deep in the gut. My heart rate quickened, and I struggled to breathe. Another fantastic human being, gone.<br />
<br />
I remembered Sam. Probably the most wonderful individual in all of time. Funny, kinda, smart, caring, atheltic, health-conscious, people-person, fun- loving, creative. Engineer with Parker Hannifan. Hard worker. Married 6 weeks. I'll never forget the couch in Guzzetta Hall. His sister Christina, my closest friend, was siting on the end of her long board, sliding back and forth. He had been really sick, and she had missed a number of days of school to be with him. Since she was back in school, I assumed he was getting better. He had gotten better- he had received his perfect healing. I went to m violin lesson, just feeling numb. And it seemed ok. But even now, three years later, there are days when the feeling comes back. The breath-sucking, gut-wrenching, heart-twisting pain. They give you a pain scale at the hospital. We've all seen it- the little faces, that go from smiling to crying. You have to tell them which number your pain is at, from 1-10. I've been in pain. A lot of pain. A physically can't move or breath type-of-pain. But I've never told a nurse my pain is at a 10. No matter how bad my physical pain, it's always a 9 or lower. Because a 10 is the worst pain imaginable. And that pain doesn't come from the body- it comes from the heart. It's when your heart is twisted so tight, and you open your mouth and you want to scream, but the anguish can't come out. When you're eyes fill with tears, but you can't cry. Crying makes you feel better. You release the tears, and 5,10,15 minutes later you feel better. But your body doesn't let you cry, because you can't feel better. Nothing will bring them back. You will never feel better, because you have the rest of your life to think about them.<br />
They got it easy. They're gone. One of my friends always tells me "Live fast, die young," But I'm still here. I had a lung infection too. So bad I got admitted to the PICU. I had a chest line, a central line, and a thousand other lines and buttons hanging off of me. I was fighting for my life. I should have, could have, would have died.<br />
<br />
But. I. Didn't.<br />
<br />
WHY? Why am I still here? Why does a top-notch athlete and student, who was going to serve his country, die? Why does a fantastic, friendly engineer who made friends with everyone he met die? Why did a woman who tried so hard to have a child not live past his 6 week birthday? Why did a beautiful little girl not survive endless radiation? Why did a girl, who seemed to be doing really well, suddenly not survive her transplant?<br />
I'm still here. I still have to get up every morning, and deal with my physical pain, limitations, and medicational roller-coasters. I should feel lucky, or blessed, or whatever they say.<br />
But I don't. Sometime the pain is so hard- I feel ashamed that I'm here. I pick in my head which one I should have been switched out too. Who would have done a better job at life, or for God. And wonder why I'm still stuck in this horrible place.<br />
<br />
Follow-up:<br />
<i>Survivor's guilt is real. And I still deal with this, as do a lot of survivors I know. But I'm still here because God still has work for me to do! </i>Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-6381681608179654358.post-41480537819374713402017-04-23T22:56:00.002-04:002017-04-23T22:56:27.325-04:00As If There Was Ever Any Doubt<div class="MsoNormal">
<div class="MsoNormal">
Several weeks ago, a friend and I were going to a lecture in
the evening. Having some time to spare,
and needing to meet our Fitbit step goals, we decided to enjoy the beautiful weather
and walk around campus. As we passed the
Union, he reminded me I needed to buy my graduation tassel, and we went to the
bookstore. After looking at prices, I decided that I was going to purchase my
cap and gown and tassel, right then and there! I picked out the appropriate
length gown, grabbed my orange engineering tassel, and paid for my
purchases. One celebratory Starbucks
passion tea later, we left the Union to go to the car. I turned to my friend, and said with purpose,
excitement, and wonder “I’m going to graduate!”
I’ll never forget his reply- in a tone of perfect confidence and zero
surprise he said, “As if there was ever any doubt, Jen.”<o:p></o:p></div>
<div class="MsoNormal">
I thought about that- as if there was ever any doubt. Maybe not for him, but the last 5 years have
been filled with doubts for me! Doubts that I would be able strong enough
physically to be able to walk and maintain myself through college. Doubts that I would academically be able to
keep up with the course load.
Engineering isn’t easy! Doubts that I would get sick again. Doubts that anyone would ever hire me, given
my medical history. Doubts that I’d have
friends, or people that would stick with me. <o:p></o:p></div>
<div class="MsoNormal">
But God is greater than those doubts. Last Sunday, the pastor preached on God’s
faithfulness- past, present and future.
And I realized how true that was in my life. It’s hard to see the good in things, when
you’re in the midst of it, but when you reach the other side and look back,
it’s beyond incredible to see what God has done. <o:p></o:p></div>
<div class="MsoNormal">
Faithful you’ve been, and faithful you will be. So here’s my faithfulness list. <o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
</div>
<ul>
<li>I walk to Polsky (our farthest
building), twice a week, without coughing like I’m dying.</li>
<li>I carry an 18+lb pound backpack</li>
<li>I’m in my final 4 classes, and
looking to pass them all.</li>
<li>I am able to be involved in
college, through several different groups, and being able to lead and grow them
has just been incredible</li>
<li>I just had my 4-years
post-transplant, with no evidence of any cancer!</li>
<li>I have the most incredible group
of friends, who support, celebrate, and encourage me</li>
<li>I got a part-time job for the
semester, that I was praying and interviewing like crazy for, and suddenly fell
in my lap!</li>
<li>I get to go to CancerCon again
this year! And sneak in a visit to Jo :)</li>
<li>I received the ASME
Griffith-Collins award, for mechanical engineering seniors</li>
<li>I was named one of the Top 10
seniors in the Honors College</li>
<li>I have an incredible
future-roomie!</li>
</ul>
<o:p></o:p><br />
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal">
I. Got. A. Job. I’ll be starting at F.M. Global this
June, as a Field Consulting Engineer!
Side story: this had me kinda worried. I
worked at FM this summer, and loved it.
They're a property insurance company, who use engineers to help prevent
risk, rather than other companies who use actuaries to predict risk. So the field engineers tour the clients'
plants/buildings/equipment and look at the fire protection systems,
earthquake/tornado/flood hazards and other safety factors and provide
recommendations to keep the place safe.
My summer co-op gave me the opportunity to tour a lot of different
industry in the area, and also gave me a chance to meet a lot of new people! I
loved how each day looked different than the one before, and I really loved FM
and the people I worked with. My two big
concerns with it were this: one, being able to last all day. It's tough walking on a concrete floor,
climbing narrow ladders to the roof, and wearing steel-toe boots all day! But I
made it through a summer, and I'm trusting God will enable me to last the days
of work as well. The other major concern
was my health. There's a lot to consider
if you're going to deal with me! Co-op is one thing- hourly salary, for 12
weeks is manageable. A regular salary,
plus benefits, for an indefinite amount of time is another thing. But God once again proved that my concerns
were no match for him, when I received my offer. It brought to mind God's promise to bless me
with "hope and a future", once again.
<o:p></o:p></div>
<div class="MsoNormal">
So yeah...that's my story.
Life's still tough. There's a lot
going on right now, that is crazy, and worrisome and horrible and taxing and
really stretching me. But then I have to look back on this brief list, and many
other things not on this list, and remember that He is faithful! <o:p></o:p></div>
<div class="MsoNormal">
Closing thought from Standpoint this morning: Nehemiah 12:43- And on that day they offered great
sacrifices, rejoicing because God had given them great joy. The women and
children also rejoiced. The sound of rejoicing in Jerusalem could be heard far
away.<o:p></o:p></div>
<br />
<div class="MsoNormal">
God's given me great joy, which will be heard far and near!<o:p></o:p></div>
</div>
Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-59791412146633111662017-01-13T14:58:00.003-05:002017-01-13T14:59:23.731-05:00Surviving College with Cancer- The Friends EditionI 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. <br />
<b><i>So this post is for you, friends of the person in college with cancer. </i></b>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.<br />
<div>
<span style="color: magenta;"><br /></span></div>
<b><span style="color: magenta;">Helen Keller said, "Walking with a friend in the dark is better than walking alone in the light."</span></b><br />
<br />
<b><span style="color: purple;">Celebrate us. </span></b>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.<br />
<br />
<b><span style="color: purple;">Encourage us.</span></b> 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. <br />
<br />
<b><span style="color: purple;">Protect us.</span></b> 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. <br />
<br />
<b><span style="color: purple;">Tease us. </span></b><i>If any of my friends read this, please don't take this as an invitation to tease me more! </i>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.<br />
<br />
<span style="color: purple;"><b>Miss us. </b></span> 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.<br />
<br />
<b><span style="color: purple;">Choose us.</span></b> 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!<br />
<br />
<b><span style="color: purple;">Hear us. </span></b> 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.<br />
<br />
<b><span style="color: purple;">Love us. </span></b>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. Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-45877319770526974292017-01-12T16:12:00.000-05:002017-01-13T14:46:00.383-05:00Surviving College after You've Survived CancerOne hundred and twenty days. And I will be a college graduate .<br />
<br />
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!<br />
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!<br />
Here are the five people most important to your success in college (in no particular order)<br />
<br />
1. Office of Accessibility (OA)<br />
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. <br />
But, back on track. I had no idea what an OA could do. So in case you have no idea, let me tell you!<br />
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!<br />
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!<br />
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. <br />
<br />
2. Dean's Office<br />
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!<br />
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. <br />
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.<br />
<br />
3. Professors<br />
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. <br />
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!<br />
<br />
4. Doctors and your medical staff<br />
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!<br />
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!<br />
<br />
5. You<br />
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. <br />
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.<br />
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!<br />
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!<br />
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.<br />
Because you absolutely cannot do college on your own.<br />
<br />
**The following is what my freshman year chemistry professor wrote me, after reading this post. Thanks for sharing a professor's perspective Dr. Tessier!<br />
<br />
<div class="MsoNormal" style="background-color: white; color: #222222; font-family: "Times New Roman", serif; font-size: 12pt; margin-left: 0in; margin-right: 0in;">
<span style="font-family: Arial, sans-serif; font-size: 11pt;">I read your update and I wanted to add two things to your advice, from the perspective of a professor.<u></u><u></u></span></div>
<div class="MsoNormal" style="background-color: white; margin-left: 0in; margin-right: 0in;">
<span style="color: #222222; font-family: Arial, sans-serif;"><span style="font-size: 11pt;">- A small number of students resent OA and the services it provides. So, if possible, discuss OA </span><span style="font-size: 14.6667px;">concerns</span><span style="font-size: 11pt;"> in private with your professor and don’t broadcast that you have received </span><span style="font-size: 14.6667px;">accommodations</span><span style="font-size: 11pt;">. 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. <u></u><u></u></span></span></div>
<div class="MsoNormal" style="background-color: white; margin-left: 0in; margin-right: 0in;">
<span style="color: #222222; font-family: Arial, sans-serif;"><span style="font-size: 11pt;">- If your situation is improving, you may want to ask the professor to help wean you off any </span><span style="font-size: 14.6667px;">accommodations</span><span style="font-size: 11pt;">. Even open-minded people (professors </span><span style="font-size: 14.6667px;">writing</span><span style="font-size: 11pt;"> letters of recommendation, potential employers, admission committees) may have a bit lower opinion of your abilities if your receive </span><span style="font-size: 14.6667px;">accommodations</span><span style="font-size: 11pt;">. I once worked with a young man to wean him off </span><span style="font-size: 14.6667px;">accommodations</span><span style="font-size: 11pt;">. 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 </span><span style="font-size: 14.6667px;">accommodations</span><span style="font-size: 11pt;">. 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. </span></span></div>
Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-36740104898770168832016-11-20T17:42:00.002-05:002016-11-20T17:42:46.194-05:00Nothing is Wasted<div style="margin-bottom: .0001pt; margin: 0in;">
A few
summers ago, when I was working in Solon, I started attend a college-age group
called Standpoint, based out of Parkside Church. It was close to work, so
I'd grab a light dinner, and head over to Dan and Olivia's house after work.
They always welcomed me with open arms, and eventually their kindness and
love drew my entire family to Parkside. <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
Late one night, after our Bible
study, Olivia, a friend, and I were talking in the basement. My friend
and I were both busy with life, and struggling with various things- I don't
remember the details. But Olivia shared a promise of God with me- that he
will restore everything that the locust has eaten/taken away. And he
won't just match it, he'll restore it overflowing, shaken-down, so much bigger
and better than ever I could imagine. She also shared that sometimes the
restoration isn't immediate, but God always keeps his word. <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
So many times through the last few
years I've remembered that. It's really hard to constantly deal with the
new normal. I want to compare myself to who I was, or try to do what I
used to do, or enjoy what I could once do. And it gets discouraging.
Really fast. But I've just tried to remember those pesky little
locusts- they may take everything you once held dear, but God is so much bigger
and better then the locusts, and he always keeps his word! <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
Through this semester, I've begun
to see some of the restoration. The biggest blessing has been catching up
to my class. I didn't think that dream would ever become reality, especially
as it meant extra classes, extra semester, and a ton of extra work! But God has
been faithful, and I'm all caught up! <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
That being said...<span style="background: white; color: #222222;">I've been battling a cold the last few
weeks. Whenever I get a cold, my body has a lot of difficulty just functioning.
Plus I get a really bad cough with the cold weather. Between feeling
horrible, and being super crazy busy with school right now, I've been feeling
really discouraged. On the way home from church this afternoon, I heard
the song "Nothing is Wasted". I've included the words below.
I'm at school working on a huge presentation for tomorrow right now, with the
song on repeat. It's such a calming reminder that God won't waste the
seemingly wasted time with cancer. </span><o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white; color: #222222;">Whatever the
locusts are eating in your life right now, nothing is wasted. </span><o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white; font-family: "adobe myungjo std m" , serif;">You know my every need<br style="box-sizing: border-box;" />
You see my poverty<br style="box-sizing: border-box;" />
You are enough for me, Jesus<br style="box-sizing: border-box;" />
You gave the blind man sight<br style="box-sizing: border-box;" />
You raised the dead to life<br style="box-sizing: border-box;" />
You've done the same for me, Jesus<br style="box-sizing: border-box;" />
<br style="box-sizing: border-box;" />
You are loving, You are wise<br style="box-sizing: border-box;" />
There is nothing in my life You cannot revive<br style="box-sizing: border-box;" />
You are loving, You are wise<br style="box-sizing: border-box;" />
There is nothing too hard for our God<br style="box-sizing: border-box;" />
<br style="box-sizing: border-box;" />
Your word inside of me<br style="box-sizing: border-box;" />
My strength, my everything<br style="box-sizing: border-box;" />
My hope will always be Jesus<br style="box-sizing: border-box;" />
Your breath inside my lungs<br style="box-sizing: border-box;" />
You're worthy of my trust<br style="box-sizing: border-box;" />
You will forever be Jesus<br style="box-sizing: border-box;" />
<br style="box-sizing: border-box;" />
You are loving, You are wise<br style="box-sizing: border-box;" />
There is nothing in my life You cannot revive<br style="box-sizing: border-box;" />
You are loving, You are wise<br style="box-sizing: border-box;" />
There is nothing too hard for our God<br style="box-sizing: border-box;" />
<br style="box-sizing: border-box;" />
Nothing is wasted<br style="box-sizing: border-box;" />
You work all things for good<br style="box-sizing: border-box;" />
Nothing is wasted<br style="box-sizing: border-box;" />
Your promise remains<br style="box-sizing: border-box;" />
Forever You reign</span><span style="font-family: "adobe myungjo std m" , serif;"><o:p></o:p></span></div>
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<span style="background: white; font-family: "adobe myungjo std m" , serif;"><br style="box-sizing: border-box;" />
Your promise remains<br style="box-sizing: border-box;" />
Forever You reign<br style="box-sizing: border-box;" />
Your promise remains<br style="box-sizing: border-box;" />
Forever You reign</span><span style="font-family: "adobe myungjo std m" , serif;"><o:p></o:p></span></div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-41225316932881829152016-06-04T11:31:00.002-04:002016-06-04T11:31:40.034-04:00Life More AbundantlyToday is a warm and beautiful day in Akron. It's also the end of a few restful weeks. On Monday I'll start a co-op with FM Global. I'm excited, and a little bit nervous to be in a new company. <br />
School ended. I'd like to say it ended well, but that's not quite true. This semester is known as the hardest for mechanical engineering, and it certainly was. I took five mechanical engineering classes, and one electrical class. Funny thing is that most of the mechanical classes were 2 or 3 credits, but you still had the work of a 4 credit class. I still did pretty well in them, considering. Also, there's a reason you follow the syllabus schedule-some classes are not meant to be taken together! Basic EE was not fun. It ended with a not-fun grade, which dragged my GPA way down. But oh well, I passed! This fall will begin my last year of college. I'm so grateful that God has brought me this far.<br />
<br />
The last few weeks between school and co-op have been fun. I've had a break. I haven't had a break since sophomore year of high school I think! I've always been working when I'm not in school. And on every spring break or winter break or any other break, I've always been sick. Finally I've had a few weeks of not-sick, and nothing I have to do! I've been able to Netflix binge (for the first time ever), and sleep in almost every day! I've had a few doctor appointments as well. I've joined a small group from my college group. It's been awesome to meet a few new faces, and to really get to know these girls better. <br />
<br />
The biggest joy these past few weeks have been my friends. It kinda started with graduation. All my biology friends graduate this year, as well as a number of engineering friends who were either a year ahead of me, or completed the program in four years. A friend had an extra ticket, that she was gracious enough to share with me, so I was able to attend the engineering graduation, and see a lot of friends afterward. It seems unreal that that will be me in less than a year! It was such a nice time taking pictures and celebrating with them. The freedom of no schedule has allowed me to join impromptu gatherings, like Applebee's with Noelle and Dom, or crashing with Heather after her birthday party, or making pepperoni rolls with Noelle, or West Side Market with Heather and Noelle, accompanied by an Ohio City tour, and glass blowing demo, or just hanging out with friends at the U after service, or Asian market shopping with AJ, or Mary Kay with Brittany, packing and dinner with Sara, Ronald McDonald dinners with Joan and Hanneh, or so many other things! Even just texting friends and snapchatting them has been fun. <br />
<br />
Yesterday Noelle and I were talking about when we first met the different people in our mutual friend group. I realized just how many people God has brought into my life. And there's a whole different group just in my major! I'm so grateful for the boys who've taken me in, and have supported and helped me, especially through this rough semester. Having these guys to do homework with, compare homework with, share notes, work on projects, unexpectedly see in the lab on Saturdays, get Penn Station on said Saturday, sprint to Panda Express with, steal stuff out of a friend's backpack, go to the hospital with said friend, reveal test scores together, share Pizza Fire in the basement of ASEC while studying Basic EE, crowd into an over-filled tutoring room to learn said Basic EE, so. many. memories.<br />
<br />
The past few years I haven't had this group. I've been on my own. I struggle through homework on my own, praying that Google would help me. I ate by myself. I didn't even go into the lab, because I didn't have a buddy to "watch my stuff". I felt so alone in my major, as I watched everyone around me chat and laugh with their little groups. Now I have a group. Not just one group, either. Everyone is split into their little groups, but they've all reached out an arm to me. It's funny, every class I sat with a different group! How many past classes I've sat all alone, listening to everyone else, just absorbing and never participating. Now I'm included in conversations; I'm included in lunch invitations; I'm included in project groups.<br />
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I'm so grateful for this break, and for this last semester. It was a really difficult semester, but it's over now. I'll be entering my final year of college this fall. It seems unreal; I never thought I would make it this far. One verse I've always quoted to my friend and myself is "<span style="background-color: #fdfeff; color: #001320; font-family: "arimo" , "arial" , "helvetica" , sans-serif; font-size: 15px; line-height: 20px; text-align: justify;">Faithful is He who calls you, and He also will bring it to pass." </span>from 1 Thessalonians 5:24. God has been so faithful to me this semester, and through college. My other main verse is Jeremiah 22:11- <span style="background-color: #fdfeff; color: #001320; font-family: "arimo" , "arial" , "helvetica" , sans-serif; font-size: 15px; line-height: 20px;">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. </span>I've always believed the promises in that verse, but sometimes it seems like I'm not prospering. Ending this semester has really given me the feeling of hope, and of a future. I know I should believe in faith, but sometimes it is really nice to have a tangible proof that God is keeping his word! </div>
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And to close, one of my latest favorite songs that's gotten me through a lot of tough days recently-</div>
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Diamonds-by Hawk Nelson</div>
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Here and now I'm in the fire,<br />
In above my head<br />
Oh, oh, oh oh, oh, oh<br />
Being held under the pressure,<br />
Don't know what'll be left<br />
Oh, oh, oh oh, oh, oh<br />
But it's here in the ashes<br />
I'm finding treasure<br />
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He's making diamonds, diamonds<br />
Making diamonds out of dust<br />
He is refining in his timing<br />
He's making diamonds out of us<br />
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I'll surrender to the power<br />
Of being crushed by love<br />
Oh, oh, oh oh, oh, oh<br />
Till the beauty that was hidden<br />
Isn't covered up<br />
Oh, oh, oh oh, oh, oh<br />
Oh it's not what I hoped for<br />
It's something much better<br />
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Oh the joy of the lord<br />
It will be my strength<br />
When the pressure is on<br />
He's making diamonds<br />
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He's making diamonds, diamonds<br />
Making us rise up from the dust<br />
He is refining in his timing<br />
He's making diamonds out of dust<br />
Making diamonds out of us<br />
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I won't be afraid to shine<br />
I won't be afraid to shine<br />
I won't be afraid to shine<br />
Cause he's making diamonds out of dust<br />
Making diamonds out of us</div>
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Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-32938307642511359022016-06-04T11:31:00.001-04:002016-06-04T11:31:27.289-04:00Waterproof Mascara ( so crying is ok)<i>*I wrote this in Denver, when I was at CancerCon at the end of April, and am finally posting it!*</i><br />
<br />
I wanted to type this last night, but was a bit too tired, so here it goes.<br />
Yesterday was the first day of sessions of Cancer Con. I attended two sessions.<br />
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. <br />
<br />
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. <br />
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.<br />
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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. <br />
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. <br />
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. <br />
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.<br />
<br />
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.Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-38748174657125216682016-03-27T17:34:00.001-04:002016-03-27T17:34:45.910-04:00Happy Easter-He Is Risen!Most of you who have known me these last four years have read my blog posts on what a special holiday Easter is too me. This year, I had some unique experiences that showed me a different perspective on this celebration-the aspect of peace. The second event chronologically, but first since it is easier to explain, was watching the recent movie Risen. It's the story of a Roman military tribune, and his experiences in Jerusalem around the death of Christ, his involvement in sealing the tomb, and his search for Jesus' body and what he discovers in the end. Seeing this movie really made me realize what knowing Christ can do for a person. rabbit trail*And it made me realize (once again) that Jesus raising from the dead was true. I'm in engineering. I know and love science and facts. But no matter what opposing view is presented, the clearest, most understandable explanation is that Jesus did rise from the dead. *end trail<br />
The first event chronologically but second in my telling happened with a friend. There was a significant crisis, and I had an active role in helping through it, so was very close to the entire situation. But shortly after it began, I realized that there was tremendous fear in my friend's heart. And it kinda shocked me. I've faced the thought/chance of dying more than once, but never have I been as terrified as he was. And I realized, that I have a peace in my heart, that the world [in general] doesn't have! I have a peace that no matter what comes my way. That doesn't mean I don't get anxious, or worried, or even scared at times, but underneath those emotions is a trusting comfort that my God is in control of every situation.<br />
So this Easter Sunday, do you have peace in your heart? No matter what may happen with elections, or shootings, or weather, or sickness, or anything-do you know that you have an overwhelming peace in your heart that will let you face any situation? If you have this peace, do others around you sense and see that in your daily life?<br />
Jesus faced a really hard time in choosing to die, but he had the peace that he was in the midst of his Father's will. One of the favorite classic hymns is "It Is Well". My favorite memory of singing it was with my cancer support group at Parkside Church. Every person there sang it with such conviction and happiness, yet each one there had been directly touched by cancer. I don't know if you know the back story to that song, but the condensed version is that the author had lost a lot of investments and properties to the Great Chicago Fire. While trying to salvage his financial affairs, he sent his wife and daughters on ahead to take their planned trip to Europe. However, while crossing the Atlantic, the ship sank and his wife alone survived. Later, while visiting near the sight of where his four daughters drowned, he wrote these words:<br />
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<i style="line-height: 22.4px;">When peace like a river, attendeth my way,</i></div>
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<i style="line-height: 22.4px;">When sorrows like sea billows roll;</i></div>
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<i style="line-height: 22.4px;">Whatever my lot, Thou hast taught me to say</i></div>
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<i style="line-height: 22.4px;">It is well, it is well, with my soul.</i></div>
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<i style="line-height: 22.4px;">Refrain:</i></div>
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<i style="line-height: 22.4px;">It is well, (it is well),</i></div>
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<i style="line-height: 22.4px;">With my soul, (with my soul)</i></div>
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<i style="line-height: 22.4px;">It is well, it is well, with my soul.</i></div>
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<i style="line-height: 22.4px;">Though Satan should buffet, though trials should come,</i></div>
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<i style="line-height: 22.4px;">Let this blest assurance control,</i></div>
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<i style="line-height: 22.4px;">That Christ has regarded my helpless estate,</i></div>
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<i style="line-height: 22.4px;">And hath shed His own blood for my soul.</i></div>
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<i style="line-height: 22.4px;">My sin, oh, the bliss of this glorious thought!</i></div>
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<i style="line-height: 22.4px;">My sin, not in part but the whole,</i></div>
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<i style="line-height: 22.4px;">Is nailed to the cross, and I bear it no more,</i></div>
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<i style="line-height: 22.4px;">Praise the Lord, praise the Lord, O my soul!</i></div>
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<i style="line-height: 22.4px;">And Lord, haste the day when my faith shall be sight,</i></div>
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<i style="line-height: 22.4px;">The clouds be rolled back as a scroll;</i></div>
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<i style="line-height: 22.4px;">The trump shall resound, and the Lord shall descend,</i></div>
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<i style="line-height: 22.4px;">A song in the night, oh my soul! </i></div>
</i>Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-86674689697859357032016-03-13T15:38:00.000-04:002016-03-13T15:38:24.306-04:00Hello, It's Me...for the first time this yearI 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. <br />
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. <br />
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.<br />
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. <br />
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. <br />
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. <br />
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. <br />
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-<i>So let it rise!-</i> because we <b>believe, </b>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. <br />
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 <i>He is faithful. </i>And with that confidence, I was able to go to Cleveland. <br />
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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. <br />
<br />
<br />
<br />Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-89250842674956912462015-12-24T14:57:00.001-05:002015-12-24T14:57:23.763-05:00A Christmas MemoryThree years ago today I was officially diagnosed with relapsed Hodgkin's lymphoma. Oncology clinic was only open a half day, and I remember going with my dad that Monday morning. Even though it was Christmas Eve, life went on as usual at oncology. I remember them presenting the various chemo options, scheduling a date for surgery for my port, and reviewing my blood work. I remember hugging my nurse a Merry Christmas, and feeling so overwhelmed as she held me.<br />
That Christmas Eve, I had just finished my first, absolutely fantastic, semester of college. I had played in a string quartet at a Christmas service. Presents were wrapped, guests were coming in to spend the holiday, and it seemed a quintessential Christmas celebration. <br />
But it wasn't. Through the whole weekend I, and my family, savored every moment. Petty disputes were dismissed, and trivial mishaps ignored. We were together. For how long, we didn't know. I don't remember what gift I got, or what gift I gave, but I remember being there all together. Through Christmas day, neighbors and friends dropped by, to celebrate Christmas with us. <br />
Here I am, three years later. I've just finished my seventh semester of college, and really well for me, all things considered. I just played a string quartet service with my siblings. The presents are wrapped, and the house is ready for the impending arrival of the guests. It's easy to get caught up in the hustle and bustle of the holidays. Dinner guests and engagements, staff meetings and Christmas parties- life is busy. But I don't want to forget what is truly important. What Christmas is really about. It's about the birth of a deity, come down to man, to save us from ourselves. God gave his "only begotten son", so that we may have eternal life.<br />
I think the key word is <i>gave. </i>God gave, and so should we. Christmas is about giving- maybe giving presents to family, but so much more than just that. It's about giving love to the unloved. It's about giving cheer to the unhappy. It's about giving kindness to the forgotten. <br />
This Christmas, give outside your normal giving zone. Maybe you always give to the Salvation Army bell ringer- that's great, but perhaps it's time to go a little beyond that. Maybe give a gift to a hurting or needy family. Buy some items of a non-profit's Amazon Wish List. If you're short on the cash, give of your time. Volunteer at the City Mission or Haven of Rest; cook dinner at the Ronald McDonald House. Walk the dogs at One of a Kind Pet Rescue. Clean the home of an elderly friend. Invite a lonely person to share your Christmas dinner. <br />
<br />
<span style="font-family: Georgia, Times New Roman, serif;"><i> The weekend before that Christmas Eve, I had spent in the hospital, following a spleen biopsy. That was one of my most memorable hospital stays. I was there technically just for observation, so I was free to roam around. Rachel stayed with me, and with our reindeer antlers we owned the halls. We made K-cups of Starbucks coffee, ordered all sorts of food, and happily watched Hallmark movies. It was a special sister weekend, even if it was spent in a hospital. At that point, I knew the cancer had returned, but didn't know the specifics. We both knew it was a last hurrah before I would be back in the throws of treatment. And I saw Santa Claus. I know he isn't real, and I've never believed in him. But that Christmas, I needed something childish and fantastical to believe in. Reality was overwhelming, so I entered the magical fairy tale of Santa Claus, and became obsessed with him. My child-life helped me Skype with Santa, a very special memory! </i></span><br />
But I was blessed to be able to be home for Christmas. There are many who aren't so blessed. They'll be spending Christmas in a hospital room. Their four bleak walls bear no Christmas cheer. They long for the company of their family and friends. Maybe go sing some carols, or take some small Christmas present in a fun wrapping paper. I think this Christmas carol is a fitting end:<br />
<br />
<div style="background-color: white; font-family: serif; font-weight: bold;">
</div>
<div style="text-align: center;">
Thou didst leave Thy throne and Thy kingly crown,</div>
<div style="text-align: center;">
When Thou camest to earth for me;</div>
<div style="text-align: center;">
But in Bethlehem’s home was there found no room</div>
<div style="text-align: center;">
For Thy holy nativity.</div>
<br />
<div class="chorus" style="background-color: white; font-family: serif; font-style: italic; font-weight: bold; text-align: center;">
O come to my heart, Lord Jesus,</div>
<div class="chorus" style="background-color: white; font-family: serif; font-style: italic; font-weight: bold; text-align: center;">
There is room in my heart for Thee.</div>
<div class="chorus" style="background-color: white; font-family: serif; font-style: italic; font-weight: bold; text-align: center;">
<br /></div>
<div class="chorus" style="background-color: white; font-family: serif;">
This Christmas, may there be room in all our hearts for the reason for Christmas, Jesus. </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-9ST4jB_KGrw/VnxN5gDGF0I/AAAAAAAABRU/_DgOmny-v0s/s1600/IMG_3164.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://3.bp.blogspot.com/-9ST4jB_KGrw/VnxN5gDGF0I/AAAAAAAABRU/_DgOmny-v0s/s320/IMG_3164.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas 2012</td></tr>
</tbody></table>
<div class="chorus" style="background-color: white; font-family: serif;">
<br /></div>
<div style="background-color: white; font-family: serif; font-weight: bold;">
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<br />Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-6381681608179654358.post-63695817562988240142015-09-25T23:59:00.001-04:002015-09-25T23:59:09.971-04:00Disappointment<span style="background-color: white; color: #222222; line-height: 15.6px;"><span style="font-family: inherit;"><i>The feeling of sadness or displeasure caused by the nonfulfillment of one's hopes or expectations.</i></span></span><br />
<span style="background-color: white; color: #222222; line-height: 15.6px;"><span style="font-family: inherit;"><br /></span></span>
<span style="background-color: white; color: #222222; line-height: 15.6px;"><span style="font-family: inherit;">So goes the dictionary definition of disappointment. My hopes came crashing down today. </span></span><br />
<span style="font-family: inherit;">I've wanted to run the Akron Marathon relay team since I started at the University of Akron. The first year, I was fresh out of chemo and radiation, but still wanted to give it a shot. However, a mere 3 weeks weren't hardly enough to attempt a couple mile run! The next year, I was supposed to be at home for the first 2 weeks of school, after a 2 week PICU stint, but I played hooky from home and went to school. Seeing as I could barely walk when classes started, the marathon was kinda out of the question. Last fall, came after a rough summer, as I was dealing with several stomach and endocrine issues. So this spring, I determined that nothing was going to stop me from preparing and participating in this college-long dream. Looks like I'll have one more year to make that dream come true. I started training in early summer. I hate running or exercising in general, but envisioning the marathon and fulfilling this four-year long dream, spurred me on. I started at walking just a mile, but gradually built it up to 4 miles, and then to running chunks of it. I was in better shape than I've probably ever been in my life!</span><br />
<span style="font-family: inherit;">*insert screeching halt*</span><br />
<span style="font-family: inherit;">I got a cold Wednesday, and this morning was having trouble with coughing and breathing, which prompted oncology to want to see me. Well, one chest x-ray and two breathing treatments later, they forbid me to run. My lung situation, combined with a recently concerning cardiology situation, didn't present a good mix. I understand their concern, and combined with other circumstances, it was the right decision. But that didn't make the aftermath any easier. It hurts. I was doing a "good" thing; and it had to end like this. The day before the race. Not only did it get my hopes up quite high, and set me back nearly $50, it also left my team scrambling for a replacement. Sometimes I wish that I didn't have to consider medical stuff whenever I make a decision- I just want to make a decision based on what I want to do, and not have to consider if I can physically make it. Well, there ends that. I've got one last year to shoot for running it while in college. I heard this song on the radio this morning, before anything noted in this post happened. At first, it seemed weird to end with this, but the more I reflected, I realized just how much God has brought me through, and I think this really fits. Impossible, by Building 429 </span><br />
<span style="font-family: inherit;"><br /></span>
<div style="text-align: center;">
You got a vision, you got a dream</div>
<div style="text-align: center;">
But it feels a million miles away</div>
<div style="text-align: center;">
You got your passion, you got to believe</div>
<div style="text-align: center;">
That this is why you were made</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
It takes a little time to see</div>
<div style="text-align: center;">
I said it takes a little time</div>
<div style="text-align: center;">
Takes a little time</div>
<div style="text-align: center;">
It takes a little time to believe</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
We can rise above the typical</div>
<div style="text-align: center;">
And be anything but usual</div>
<div style="text-align: center;">
We know, we know, we know</div>
<div style="text-align: center;">
<b>That there's no such thing as impossible</b></div>
<div style="text-align: center;">
And nothing is unreachable</div>
<div style="text-align: center;">
When we trust the God of miracles</div>
<div style="text-align: center;">
We know, we know, we know</div>
<div style="text-align: center;">
That there's no such thing as impossible</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
We're never given the spirit of fear</div>
<div style="text-align: center;">
Only the power of love</div>
<div style="text-align: center;">
<b>We'll keep on running and not grow weak</b></div>
<div style="text-align: center;">
<b>His strength is more than enough</b></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-6954917787624341832015-08-17T01:44:00.000-04:002015-08-17T01:44:56.432-04:00A dream that you hold in your hand<span style="line-height: normal;">It's 1:30 am. Two and a half hours after I said I was going to sleep. I read a book. Actually, two books. Granted, they weren't Shakespeare or anything close, just some well written summer reading my siblings got from the library. But these are the first books I've read, in nearly four years. Since I started chemotherapy in 2012, I haven't had the concentration, mental stamina, or strong enough eyes to finish a book. </span><br />
<span style="line-height: normal;">I loved books. Many nights were spent reading: non-fiction, biographies, memoirs, novels, and mysteries were just a few of the many things I enjoyed. But cancer took that away from me. I remember trying to read a Sherlock Holmes mystery- one of my favorites to read. My eyes hurt by the end of the page, and my head throbbed with simply trying to remember the characters I once knew. It hurt me almost as much as the chemo. To lose my one true love. To be denied access to that magical land. To not be able to read. </span><br />
<span style="line-height: normal;">I'm 60% done with college. I've managed to work my way up to be able to concentrate for the 50 minute classes. Still working on anything longer. I've managed to be able to read my textbooks, and lecture notes. But this. Reading for me. Simply for enjoyment. It's unreal. It's incredible. It's fantastic. I feel like I've been let out of captivity. I read a book. </span><br />
<span style="line-height: normal;">I'd better get to sleep now. Time stands still for no one, and work beckons me in the morning. But I'll be floating with the exuberance of freedom- I can read once more.</span><br />
<span style="line-height: normal;"><br /></span>
A book is a dream that you hold in your hand.<br />
–Neil Gaiman<br />
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<br />Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-55081654162290578012015-07-30T23:31:00.000-04:002015-07-30T23:31:13.673-04:00Back to the Basics<div style="margin-bottom: .0001pt; margin: 0in;">
It's been
a very busy summer, but I'm glad I get a chance to write this. It's been
on my heart since last week, so I've finally gotten the time to put it down.
Last week I volunteered at the Parkside Church Green Campus VBS (Vacation
Bible School). VBS is like a summer camp for kids that usually last about
a week. I had wanted to volunteer at a VBS, but since Parkside's VBS was
held during the day, I couldn't, but I was thrilled that Green's VBS was held
in the evenings! At first it was a little unnerving, since I didn't know anyone
at the church, but they accepted me as part of the family of God, and I was
able to make and work alongside some awesome friends of all ages! I
remember attending a VBS when I was five, but I have not gone since. Now
15 years later, I got to help out with five year olds for a week! It was kinda
neat, as I haven't been around little kids since I was diagnosed. <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
The theme for the week was "Everest: Conquering Challenges with God's Mighty Power." Sitting in with the kids, it was encouraging to be reminded
of the simple truths of God's word. Sometimes in my Bible readings I'm
looking for the "big" things God wants to tell me. Every night
that week, a different, very basic topic was introduced, in a simplistic
manner. It reminded me that how important the fundamentals of God are.
I'd like to share them with you, along with a brief bit about what each
statement means for me. <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<b>1. God has the power to provide: <span class="versenum"><span style="background: white; mso-bidi-font-weight: bold;"><span style="box-sizing: border-box;"> </span></span></span><o:p></o:p></b></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white;">“And God will generously provide all you
need.” </span> 2Cor. 9:8<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
This summer, there was a tuition increase, and my biggest
scholarship was cancelled. Thankfully, the tuition increase was repealed,
and I got the scholarship back on probationary status. However, I need to
raise my GPA by .6 points this fall, which to me seems a near
impossibility. This topic was a stinging reminder to me. God is in
control of everything, He will provide for school. I don't have to worry
about the money, or if my grades will be high enough. He will GENEROUSLY
provide all that I need. <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<b>2. God has the power to comfort<o:p></o:p></b></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white;">“He comforts us in all our troubles so
that we can comfort others.” </span>2Cor 1:4<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
Not gonna lie, life is hard. It's hard to get up
every morning, and face the battles of trying to control my sugars, feel
alright, deal with how the weather change will affect me, or so many other
things. But God is always there to comfort me, even when others don't
know what is going on. He is there to help me in all my troubles.
And like the verse says, so that we can comfort others. Make it a
point to encourage someone daily. Maybe something as small as texting
them "Have a great day", just to remind them that you and God love
them. <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<b>3. God has the power to heal<o:p></o:p></b></div>
<div style="margin: 0in 0in 0.0001pt;">
<span id="en-NLT-16331" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="text"><span style="background: white;">“He
heals the brokenhearted</span></span></span><span style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="indent-1-breaks"><span style="background: white;"> </span></span><span style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"></span><span class="text"><span style="background: white;">and bandages their
wounds.” </span></span> Psalm </span>147:3<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
This was a big one for me. I’ve lost the child-like
faith that believes that God has the power to heal. But I’m trying to get
it back. I’ve been so encouraged by hearing others pray with such belief
that God will heal, and claiming his promises to heal. <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<b>4. God has the power to forgive<o:p></o:p></b></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white;">“But you are a God of forgiveness,
gracious and merciful, slow to become angry, and rich in unfailing love.”
</span>Nehemiah 9:17<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
No matter what I do, God still loves me, and will forgive
me. I've done more than my share of bad things, but I can rest in God's
forgiveness. <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<b>5. God will love us forever. <o:p></o:p></b></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="background: white;">“So that everyone who believes in him will
have eternal life.” </span>John 3:15<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
This is a long term promise. Forever. No end.
Ever. It's a mind-blowing thought. But every time I feel discouraged
or down, I can remember that God always has and always will love me. <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
Here is a song that I've used in a prior blog post, but
just seems like a fitting end to this post. <o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
</div>
<div style="text-align: center;">
<span style="background-color: #ccccdd; font-family: Verdana, sans-serif; font-size: 10pt;">Water you turned into wine, opened the eyes of the blind
there's no one like you, none like You!</span></div>
<div style="font-family: Verdana, sans-serif; font-size: 10pt; text-align: center;">
<span style="background-color: #ccccdd; font-size: 10pt;">Into the darkness you shine out of the ashes
we rise there's no one like you none like You!</span></div>
<span style="background-attachment: initial; background-clip: initial; background-color: #ccccdd; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; font-family: Verdana, sans-serif; font-size: 10pt;"><div style="text-align: center;">
<span style="font-size: 10pt;">Our God is greater, our God is stronger, God
you are higher than any other.</span></div>
</span>
<span style="background-attachment: initial; background-clip: initial; background-color: #ccccdd; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; font-family: Verdana, sans-serif; font-size: 10pt;"><div style="text-align: center;">
<span style="font-size: 10pt;">Our God is Healer, Awesome in Power, Our God!
Our God!</span></div>
</span>
<div style="text-align: center;">
<span style="font-family: Verdana, sans-serif; font-size: 13.3333330154419px;"><br /></span></div>
<span style="background-attachment: initial; background-clip: initial; background-color: #ccccdd; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; font-family: Verdana, sans-serif; font-size: 10pt;"><div style="text-align: center;">
<span style="font-size: 10pt;">And if our God is for us, then who could ever
stop us.</span></div>
</span>
<span style="background-attachment: initial; background-clip: initial; background-color: #ccccdd; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; font-family: Verdana, sans-serif; font-size: 10pt;"><div style="text-align: center;">
<span style="font-size: 10pt;">And if our God is with us, then what could
stand against.</span></div>
</span>
<span style="background-attachment: initial; background-clip: initial; background-color: #ccccdd; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; font-family: Verdana, sans-serif; font-size: 10pt;"><div style="text-align: center;">
<span style="font-size: 10pt;">And if our God is for us, then who could ever
stop us.</span></div>
</span>
<span style="background-attachment: initial; background-clip: initial; background-color: #ccccdd; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; font-family: Verdana, sans-serif; font-size: 10pt;"><div style="text-align: center;">
<span style="font-size: 10pt;">And if our God is with us, then what could
stand against.</span></div>
</span>
<span style="background-attachment: initial; background-clip: initial; background-color: #ccccdd; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; font-family: Verdana, sans-serif; font-size: 10pt;"><div style="text-align: center;">
<span style="font-size: 10pt;">What could stand against.</span></div>
</span><br />
<div style="margin: 0in 0in 0.0001pt; text-align: center;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
</div>
<div style="text-align: center;">
<span style="background-color: #ccccdd; font-family: Verdana, sans-serif; font-size: 10pt;">Our God is greater, our God is stronger, God you are higher
than any other.</span></div>
<span style="font-family: Verdana, sans-serif; font-size: 10pt;"><div style="text-align: center;">
<span style="background-color: #ccccdd; font-size: 10pt;">Our God is Healer, Awesome in Power, Our God!
Our God!</span></div>
</span><br />
<br />
<div class="MsoNormal">
<br /></div>
Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-51184768337556144192015-06-26T23:39:00.004-04:002015-06-26T23:45:21.648-04:00Dream NightHi Friends. I know I haven't blogged in a while, but tonight was really special and even though I have so many other things I could be doing, I had to share a small bit of it with you. <br />
Life's been crazy. I'm doing ok...hopefully post more about that later. I'm in summer classes, so life's been pretty hectic. Today ended week 3 for me. I only have two weeks left for my differential equations (diff eq) class, and five weeks left for my other two classes. Today was really, really long. The last few weeks, the time has been just right for me to study for my weekly diff eq test, and do a few assignments in my other classes. However, next week I have two other tests and two other huge homeworks, along with my diff eq test. I was really starting to stress about how I was going to have time for everything. Would I be able to complete the work in time; would I be able to comprehend and remember all the material; would I have the strength to make it through another tiring week. So. many. worrying. questions.<br />
And then tonight happened. I was at my oncologist Tuesday, and my Child Life Lisa handed me a flier for Dream Night, and suggested I go with the family. Only Rachel, David, and John were available so I RSVPed for us four, and we went tonight. it. was. magical. Just looking at the magnanimity of the event, and all that had been thought of and provided for us, filled my heart to overflowing. I'd like to share a little bit of that magic with you, if I can.<br />
Dream Night was held from 6-8:30, after hours at the Cleveland Metroparks Zoo. It focus on children with serious medical illnesses or disabilities, and their families. In the Welcome Plaza were several costumed characters, including a Minion, Tiger, Elsa & Anna, Optimus Prime & Bumblebee, Tinker Bell, Snow White, the Fairy Godmother, and many, many more, along with bubble machines. Each character was so friendly and welcoming, and posed for pictures. It was a special treat to see Mr. and Mrs. Webster volunteering there tonight, and their son T.J. as Stripes the Tiger! They have been a huge blessing in my life, and seeing them was a welcome surprise!<br />
<a href="http://1.bp.blogspot.com/-8bbWVxBgT5E/VY4XzUHcNZI/AAAAAAAABI8/P17o4NOiUvM/s1600/Attach0%2B%252810%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="200" src="http://1.bp.blogspot.com/-8bbWVxBgT5E/VY4XzUHcNZI/AAAAAAAABI8/P17o4NOiUvM/s200/Attach0%2B%252810%2529.jpg" width="150" /></a><a href="http://1.bp.blogspot.com/-YOUNjDHK8bM/VY4X5M8SfyI/AAAAAAAABKI/0H6u0kogs24/s1600/Attach0%2B%25289%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="240" src="http://1.bp.blogspot.com/-YOUNjDHK8bM/VY4X5M8SfyI/AAAAAAAABKI/0H6u0kogs24/s320/Attach0%2B%25289%2529.jpg" width="320" /></a><br />
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Throughout the zoo, there was ample refreshments. There were hot dogs for dinner, and concession stands with cotton candy, slushees, popsicles, pretzels, and water bottles! David and John had a blast eating all that sugar! Ben & Jerry's had also opened for the evening, so that was a special treat!<br />
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<a href="http://4.bp.blogspot.com/-EcrZtPPdE84/VY4X3R6ODuI/AAAAAAAABJ8/ScP1Sp9Wbsk/s1600/Attach0%2B%25286%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="180" src="http://4.bp.blogspot.com/-EcrZtPPdE84/VY4X3R6ODuI/AAAAAAAABJ8/ScP1Sp9Wbsk/s320/Attach0%2B%25286%2529.jpg" width="320" /></a><a href="http://1.bp.blogspot.com/-VReqQc9G2fc/VY4X4XfD0oI/AAAAAAAABJ0/uB4uzYa8dxE/s1600/Attach0%2B%25288%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="200" src="http://1.bp.blogspot.com/-VReqQc9G2fc/VY4X4XfD0oI/AAAAAAAABJ0/uB4uzYa8dxE/s200/Attach0%2B%25288%2529.jpg" width="150" /></a><br />
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Near the entrance, there was a fire truck, and other large construction trucks that you could explore! Rachel and I were able to climb on the cement mixer.<br />
<a href="http://4.bp.blogspot.com/-UpYoF2MdT5E/VY4X0io8-tI/AAAAAAAABJQ/5qYh-r32qUs/s1600/Attach0%2B%25282%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="180" src="http://4.bp.blogspot.com/-UpYoF2MdT5E/VY4X0io8-tI/AAAAAAAABJQ/5qYh-r32qUs/s320/Attach0%2B%25282%2529.jpg" width="320" /></a><a href="http://1.bp.blogspot.com/-oGrktWzC93Q/VY4Xzz6qgiI/AAAAAAAABJI/aMzzhGDP24o/s1600/Attach0%2B%25281%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="200" src="http://1.bp.blogspot.com/-oGrktWzC93Q/VY4Xzz6qgiI/AAAAAAAABJI/aMzzhGDP24o/s200/Attach0%2B%25281%2529.jpg" width="112" /></a><br />
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We were able to go on the Outback Adventure Train, which we have never done! We were also able to go on the carousel. It was so fun to see the joy of kids in wheelchairs as they were able to ride tonight! One girl kept clapping her hands, and her face looked like it would burst with joy! The tram was also running all night. The tram drivers were so friendly and helpful, making sure everyone was able to get where they wanted to go.<br />
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<a href="http://2.bp.blogspot.com/-3eLjnfApSyg/VY4XzfEtUWI/AAAAAAAABJA/qGNg8M6hoVU/s1600/Attach0%2B%252811%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="http://2.bp.blogspot.com/-3eLjnfApSyg/VY4XzfEtUWI/AAAAAAAABJA/qGNg8M6hoVU/s320/Attach0%2B%252811%2529.jpg" width="213" /></a><a href="http://1.bp.blogspot.com/-MIyNiGPrhNk/VY4X1cEOqjI/AAAAAAAABJY/lWApApkKZBs/s1600/Attach0%2B%25283%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="320" src="http://1.bp.blogspot.com/-MIyNiGPrhNk/VY4X1cEOqjI/AAAAAAAABJY/lWApApkKZBs/s320/Attach0%2B%25283%2529.jpg" width="180" /></a><br />
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One of the highlights of our night was getting to see Georgia and Christina Nixon, who we met at the Ronald McDonald House (RMH). It was really fun to get to hang out with them, and meet several other RMH residents and end our night together.<br />
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<a href="https://scontent-ord1-1.xx.fbcdn.net/hphotos-xpa1/v/t1.0-9/11227964_10204787475186791_6575758807010700078_n.jpg?oh=0a673377e582de39e739159102e9e271&oe=5634E47C" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="300" src="https://scontent-ord1-1.xx.fbcdn.net/hphotos-xpa1/v/t1.0-9/11227964_10204787475186791_6575758807010700078_n.jpg?oh=0a673377e582de39e739159102e9e271&oe=5634E47C" width="400" /></a><br />
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Usually I don't enjoy going to the zoo. Walking everywhere, usually in the heat, is quite tiring, and the more tired I am the grumpier I get. Tonight was special because everything had been planned with the intention of accomodating everyone. Also, God provided a beatufiul temperature, and held of the rain!<br />
Although I am tired, I was able to enjoy the zoo. For two reasons. First, the volunteers helped me to enjoy the night. So many people helped out. They gave up their Friday night, to dress up in a costume, or serve slushees, or drive a tram. Each and every one of them had a big smile on, and was eager to assist in any way they could. If you have the time, volunteer somewhere. Find a cause you care about, and just give 2 hours out of your week to further that cause. There is always a need for volunteers, and places are usually willing to train you to best assist them. If you don't have the time right now, donate money. Dream night was provided at no charge thanks to the generous sponsorship of many organizations. Whether you give time or money, remember it is more blessed to give, than to receive.<br />
Secondly, everyone seemed to be moving at a more leisurely pace; usually I feel like people at the zoo are trying to take pictures of as many animals as possible, as fast as possible. Today, it was about enjoying life. Taking the time to watch the bear get up from behind the tree trunk. Enjoying the tussle of two young kangaroos. STicking out slushee colored tongues. Dancing in the plaza. RUnning after the bubbles. I think each family there realized that life was a gift. Tonight was a night to enjoy nature, and each other. Life is a gift to us all. No matter where you are in your life, as long as you have breath, you can find a reason to be grateful. Take a moment and count your blessings. Do a random act of kindness, to bless someone else's day. No matter how hectic life may seem, be grateful you are able to do your work or school or housework. Somewhere in a hospital is a person wishing that they could worry about work deadlines, school tests, or household messes. But they can't. They have to worry if they'll have the strength to get out of bed; the energy to cook dinner; or if they will live. So count your blessings, and you will be encouraged.<br />
<span style="text-align: center;">Well it's pretty late, and I'm pretty tired, so sweet dreams :)</span><br />
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Anonymousnoreply@blogger.com0Cleveland Metroparks Zoo, 3900 Wildlife Way, Cleveland, OH 44109, USA41.4458638 -81.70834941.4339618 -81.728518999999991 41.4577658 -81.688179tag:blogger.com,1999:blog-6381681608179654358.post-51646379559891732252015-05-11T17:00:00.000-04:002015-05-11T17:05:56.467-04:00Hello Steroids, my old friendDear Steroids,<br />
<br />
How can words even begin to express how much I hate you. It starts with just eating you...uggh, the bitter taste that literally nothing can mask. No amount of the horrible applesauce I try to hide you in takes away the taste. I try to let the sharp bubbles of the diet pop, or some spicy bite of food alleviate some of the initial sting. And then so many...why can't they just make the you in the exact dosage amounts, instead of just 5,10, and 50?!? At least I only have to eat antacids with you this time, instead of all the chemo and antibiotics from treatments. <br />
<br />
And I can't just pop you in like a normal pill. You'll upset the stomach you've already unsettled if I don't eat you with a large meal. Which brings me to my next point: the hunger. Man, try as I might, there is little else I can think of. Food, food, and more food! I could literally eat a 3-course meal, any time of night or day, I'm so hungry! I have so many cravings, and usually not for lettuce. And of course you push my sugar numbers up, so I can't even just eat what I want, when I want, without having to shoot insulin. And all the shots have made my legs so sore and tender, not to mention a bruised mess. I hate thinking about food so much. I feel like an animal-all I care about is what I'm going to eat for the next meal or snack. I've always loved food, but you make me obsess about it. So much so that sometimes I just want to hate the food, but I can't cuz it's like I'm possessed by it. <br />
<br />
And all that food doesn't come without a price. Ten pounds literally overnight. Sure, there's a lot of water retention weight, but it still hurts. Remember last Sunday, when the accumulated effect suddenly sprung? Woke up, and "Hello, Moonface!". On the plus side, my even chubbier cheeks look bright red and rosy! And my skin is glowing! At least on my face. Forget my arms, and legs, and stomach, with all their stupid stretch marks from last time. My skin looks worse than my mom's ,who is double my age and had seven kids! You stupid stuff, my legs are all swollen. And my stomach. And my arms. And that sudden weight gain? Killing my joints. My ankles and elbows and knees-so. much. pain. I can barely walk they hurt so bad; let's forget about any other physical exertion. For all your strength, you've sapped mine. You know how much I hate taking pain killers, yet I jacked up on ibuprofen just to attend a friend's wedding! You don't let me sleep from the pain. You don't let anything give me relief. I hate you so much. I'm so tired of this. Of facing the pain and side effects every. single. day. <br />
<br />
I'm tired of feeling tired. Of no concentration and a shortened attention span. I couldn't even watch a 23-minute TV show without zoning out! I wasn't going to let you not let me finish this semester. With God's help and the prayers of His people I did. almost. Let me finish up this calculus this week and it'll be a wrap. Just please, please let me start and finish the summer session. My one request. <br />
<br />
And I'm tired of this new me. I hate lashing out at my siblings. I try not to scream every time they slam a door or yell across the room, but it doesn't always work. The noises are magnified in my head, and I can't take it. I feel like a horrible person. I hate spontaneously crying for everything. You know what a stoic person I used to be. Why do you have to do this to me? I feel like I'm being ripped apart in every direction, all the time. <br />
<br />
I've turned into the abominable snowman. New favorite orange dress I had to tie really tight during spring break? Just barely can zip it up. Lovely black and gold dress, that makes me look and feel really fancy? Barely bend over in it. Fun summer dress, with a BELT?! Wow, I loved that belt. Looks like I'm six months pregnant in it. You not only broke my body, you broke my spirit when I realized I couldn't wear these clothes any more. Don't worry, I still have the shapeless, baggy things I used to wear when I took you on treatment. The clothes that won't let the creepy crawly sensations you bring affect me too much. The loose waistbands so that my hurting stomach is somewhat comfortable. The lightweight clothes that don't look too nice, that I can afford to have drenched in sweat from the hot flashes you bring on. <br />
<br />
I was thinking of giving that half of my closet away. Literally was going to give it away this week! Good thing I didn't, I guess. I've been slowly working on what I like, and want to wear. Pretty dresses in colors I like. Different fun fabrics. Cute prints and cuts. Accessories. I know it's what's on the inside that matters, and all that, but it still feels good to look good. I'd been working at loosing all the weight you horrible thing has made me gain over the last three years. I'd accomplished it too! I felt good about myself. I'd rewarded myself once I met my goal, with those nice dresses. I was so excited about wearing them this summer. And all my t-shirts. I have quite a collection, and finally didn't look like I was a stuffed barrel in them. They actually fit! It was fun to wear them! But Good-bye. I'll leave you right where you are. Good-bye beautiful dresses. I've worn some of you twice, I think. Probably won't get to wear you again for another year, at least if I'm lucky. <br />
<br />
Hope you're happy steroids. Mission accomplished. <br />
To end on a happy note, which I really don't feel like doing right now, but I probably should. June 23rd. The last day of you horrible and bitter pills. Forty four more days. Then I'll be done with you for a season. Forever, I wish. For now, I hope. Anonymousnoreply@blogger.com5tag:blogger.com,1999:blog-6381681608179654358.post-3391342299648788442015-04-28T15:42:00.000-04:002015-04-28T15:42:01.346-04:00Update-4/28/15Hello Friends,<br />
<br />
Just a brief update of life. I'm home from Denver, where I had a fantastic time! A few prayer requests, if you will...<br />
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Academically: <br />
My last calculus test is this Thursday, 4/30. <br />
Finals-May 4,6, &7. <br />
I'm taking an incomplete in calculus, which just means I'll finish it up a bit later. I'll be taking the calculus final probably the week of May 13th. <br />
I'd really like to do well on these finals. My finals are worth 30%, 40%, and 45% in my classes other than calculus; they are also cumulative; given my reduced concentration with the steroids, I would greatly appreciate prayers that I do well on these. <br />
<br />
Physically: <br />
As of today, my blood counts are at a 10.9! <br />
I will begin an 8-week steroid taper tomorrow. The taper, and resulting withdrawal symptoms have their own horrible side-effects, that I'm not looking forward too! <br />
Leg/foot muscle cramps/spasm-they have gotten significantly worse, as you may have read in my Denver posts. They do not allow me much rest at night, as I wake up often with them, and the pain associated with them leaves me quite tired. They are extremely painful, and there isn't anthing that relives them. Also, for the remainder of the day afterward, my legs are very achy and weak. Please pray these would resolve, and I'd be able to get proper rest. <br />
General achiness-steroids are known for causing body aches, but some specific areas have been my right elbow and knee, and lower back, that have been especially intense for me. <br />
Insulin pump-the shots before every meal have gotten really old...please pray that I would speedily be able to get an insulin pump! <br />
<br />
In conclusion, a verse I heard on the radio last night. <br />
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The<span class="Apple-converted-space"> </span><span class="name" style="font-variant: small-caps;">Lord</span><span class="Apple-converted-space"> </span>is the everlasting God,</div>
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the Creator of the ends of the earth.</div>
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<strong>He will not grow tired or weary,</strong></div>
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and his understanding no one can fathom.</div>
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<span class="reftext" style="color: #001320; font-family: Arial, Helvetica, sans-serif; font-size: 11px; line-height: 14px; margin-left: 1px; margin-right: 2px; vertical-align: text-top;"><a href="http://biblehub.com/isaiah/40-29.htm" style="color: #0092f2; text-decoration: none;"><b>29</b></a></span>He gives <strong>strength to the weary</strong></div>
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and<strong> increases the power of the weak.</strong></div>
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<span class="reftext" style="color: #001320; font-family: Arial, Helvetica, sans-serif; font-size: 11px; line-height: 14px; margin-left: 1px; margin-right: 2px; vertical-align: text-top;"><a href="http://biblehub.com/isaiah/40-30.htm" style="color: #0092f2; text-decoration: none;"><b>30</b></a></span>Even youths grow tired and weary,</div>
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and young men stumble and fall;</div>
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<span class="reftext" style="color: #001320; font-family: Arial, Helvetica, sans-serif; font-size: 11px; line-height: 14px; margin-left: 1px; margin-right: 2px; vertical-align: text-top;"><a href="http://biblehub.com/isaiah/40-31.htm" style="color: #0092f2; text-decoration: none;"><b>31</b></a></span>but those who hope in the<span class="Apple-converted-space"> </span><span class="name" style="font-variant: small-caps;">Lord</span></div>
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will renew their strength.</div>
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<strong>They will soar on wings like eagles;</strong></div>
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<strong>they will run and not grow weary,</strong></div>
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<strong>they will walk and not be faint.</strong></div>
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Isaiah 40:28-31 (emphasis mine)</div>
Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-61995690739119543502015-04-28T15:29:00.002-04:002015-05-11T17:00:52.421-04:00Last Day in Denver!So picking up from Saturday night...it was another long night of muscle cramps and no sleep. My well laid plans of waking up, getting ready, having all my things packed were abruptly canceled when I woke up to banging on my door. Nateisha nad Danielle, not seeing me at breakfast and since I wasn't responding to their numerous texts and calls, took it upon themselves to come to my room and make sure I was ok! Thankfully I awoke, and was just able to make it to my first session. <br />
The first session was "When Did Cancer Turn Me Into a Control Freak". I've always been a bit of a control freak, and all cancer did was show me how little I had control over. It was a very helpful session, and I hope to write more on it later. <br />
The second session I attended was "Navigating College and Cancer." It was another excellent session. The presenter, Michele Rosenthal, drew from experience in academica, working with a college junior diagosed with Ewing's Sarcoma, and now currently volunteering at Dana-Faber to present how we should advocate for ourselves in college. While I'm currently doing everything she said, having this information when I first started college would have been really nice. She concluded her presentation with short paragraphs written by other academians, so it was really neat to "hear" their perspectives as well on how they perceive and deal with kids with cancer. The session also brought together a lot of us around the same age range. About half the group was starting their masters; a quarter of the group was on medical leave, or just going to begin college, and the last quarter of us were currently in college. <br />
After the session ended, we grabbed the sandwhiches they had for lunch and then went to finish our packing. Danielle and I had a check-out of noon, but Amelia had her checkout at 1PM. She graciously allowed us to bring out things to her room, till we were ready to leave. <br />
After that, Danielle and Nateisha were eager to go shopping, so we girls headed out. It was raining, so we were able to hop on the shuttle that runs down 16th Mile Mall. I got out at a souveniour store, while they went to Forever 21. I was able to get all my siblings t-shirts, and then we girls headed back to the hotel. Danielle and Steve were leaving on the 12:30 shuttle, while Amelia, Nateisha and I were leaving on the 1:30 shuttle. I got my bags and headed to the Concluding Ceremonies for a little while. I walked in a few minutes after it had started, to Matthew Zachary playing on the piano. He graduated college with a piano degree, and had been accepted to a masters program, when he found out he had brain cancer. Doctors said he would never play again, and wouldn't even live past 5 years max. It was a beautiful piece, and wonderfully executed. Toward the end, suddenly he stopped playing and said "Never let anyone tell you you can't do something." and ended on a dramatic chord. It was awesome. Here he was, going on 20 years survivor, and just played the piano for over 600 attendees. One of the most inspiring performance I've ever heard. <br />
They played a slideshow of the weekend, and then introduced Italia Ricci, who was one of the key note speakers. Unfortunately I had to leave shortly after a Q&A time with her began, but it is really cool to see all she is doing to advocate for us. <br />
As I went to meet Amelia and Nateisha, I overheard a lady and two gentlemen having a conversation about stupid cancer. They were trying to figure out what it was about, and when they saw my name tag they asked me about it. I was happy to explain the movement to them, and what we are about. Their question was what was the majority of the group, survivors or "other" people. They were very surprised that the group was majority survivors, and that the organization and leadership are almost all survivors. I was kinda surprised that they were surprised, but it made me realize how special this group is. <br />
Next we headed to the airport. Most of the shuttle were CancerCon attendees, so it was nice to meet a few more people as we left. At the airport, we all enjoyed some Haagen-Daaz, as a final celebration of our time at CancerCon. <br />
A little note about the flight back home...many of you probably read my post on the flight into Denver. I was in a ton of pain on that flight. Given the cramps and muscle spasms I'd had the last few nights, I was VERY nervous about the flight back home. I had asked some of my friends and my family to pray that I would be OK on the flight. God really answererd prayers! We had all switched seats, so we could be close to each other, and I had switched to an aisle seat, so I could get out easily if necessary. Nateisha was by the window, and then we were to have a random person in the middle. I wasn't sure how it would be, having a random person, but we were blessed to meet Maria. Her husband passed away from liver cancer, so she was most understanding about our own circumstanes. Also, she is an electrical engineer, and we had several fantastic conversations on engineering, pharmaceuticals, the politics of cancer, and women in engineering. It was a very good flight, as I didn't feel too bad, and had great conversations with Maria to distract me from the pain. <br />
We landed in Cleveland ahead of schedule. On the way out, Steve noticed David Blatt, and called out a "Hi Coach" along with congratulations on the great game. For those of you like me, who had no idea who David Blatt is, he is the coach of the Cleveland Cavaliers, and they had just defeated the Boston Celtics. <br />
My entire family (plus Tessa!) had come to pick me up. It was fun to talk with them on the way back home, and then divy up the loot at home. It is always so good to be back with them. <br />
Well, that basically sums up CancerCon! I hope to do a few more detailed posts on the sessions in the near future, as time allows. Thanks for joining me on the ride! Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-82764586679954188522015-04-27T18:09:00.001-04:002015-04-27T18:09:52.267-04:00Denver Day 4So for a quick study break I decided to write about Saturday. It started with breakfast with a group of survivors 15-25, where we were to discuss friendships. This group was hosted by people trying to create resources that patients can give to their friends to educate them on how best to support the patients. It was really cool to meet more people in a closer age range, and also to discuss this topic. I was really shocked how every single one of us had a story of "close" friends who had abaondoned us, but also had the story of people we barely knew coming out of the woodwork, to support and encourage us! It was cool to share our hurts together, and celebrate the friends who stuck by us. Hopefully I'll be able to write more on this later. <br />
After breakfast we had a keynote session by Dan Shapiro, an author, professor, TV consultant, and survivor. He was a fantastic speaker, as he outlined the different cancer/ill sterotypes in TV, and how that has morphed through the ages. There was such a sense of comraderie as he showed clips, and we were all able to either laugh or cry through them together. <br />
After that, Steve, Danielle, and Nateisha who had just come in from Cleveland went for a short walk ending in lunch. It was nice to get to know each other better, and talk about our experiences. <br />
For the afternoon session, I went to one called "Just for Girls". There was also a session Just for Guys, and Just for Caregivers. It was an open forum, moderated by a therapist. We chose a few topics to speak about, but only had time for a little more than one. It was neat, because some people would ask questions, or share how they were struggling, and then others would answer with their own experiences. <br />
That night, UH wanted to take all of us Cle people out for dinner. They took us to Maggiano's, and we had a very nice evening, with a fantastic dinner. It was a very relaxing evening to end a busy few days! <br />
Back to my room to pack up and get ready to finish out CancerCon! Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-11755779808072817362015-04-25T09:19:00.000-04:002015-04-25T09:19:15.368-04:00Denver Day 3So yesterday was so incredibly ful and exciting and so much more! I'm trying to write everything before today starts, because there is so much I want to remember and I will forget! <br />
The day actually started pretty early for me, around 4AM, when I woke up with really severe vascular cramps/muscle spasms, which cause incredible pain, and usually make me unable to move. While I normally get them at home occasionally, these were super bad, and I think the different environment made them worse and I couldn't use my usual tricks to get relief. I was finally able to call my dad, who prayed with me, and then we kept talking and they went away. I also texted a few friends for prayer, because usually the day following the cramps I can't walk much. Praise God it didn't hinder my day! <br />
At 7:30 I had a focus group with Seatle Genetics phramaceuticals. I had applied for one of their CancerCon scholarships, and although I received the scholarship from the Steve G Fondation, they asked me to still participate. The main idea of the group was to get our input on what we liked about 4 different medicine websites we were asked to review. They took/are taking our input on layout, content, and information to make the websites and eventally apps to our maximum liking. It was so awesome to meet their incredible team, and see how much they cared about our input. <br />
The biggest thing about this group, however, is that it was a Hodgkin's group. Every single person there had had Hoddgkin's. I think everyone of us was overwhelmed at meeting so many others with HL! I think the longest out was a guy 5 years, while there were a few still on active treatment. We went around the room and shared our name,city, and a bit about our cancer. So many people who had relapsed, had a BMT, same meds...wow. Talk about an instant connection! I think at that moment I truly understood how CancerCon is bringing us together. Seattle Genetics also had a opening "game" where we had a scenario where we had just been told we relapsed and needed a BMT. We all had to pick a picture from a pile of postcards, and explain why we picked that picture and how it made us feel. It was incredible to meet so many others who also understood the fears and uncertainty of that decision, but also to see their resolve and determined spirit as so many vowed to not give up, hard as it may be. Also, it was super cool to make new friends, that I was able to go to lunch, sessions, or exhibitors together. <br />
After the focus group, I attended Living with a Blood Cancer Diagnosis, sponsored by the Lymphoma and Leukmia Society, and Lymphoma Research Foundation. They spoke about their respective programs, and then had two doctors speak. Dr. Jennifer Levine, from Columbia was incredible. She spoke some about clinical trials as well as post-cancer issues. Her presentation was rather high level, but super understandable, with clear explanations and little jargon. Dr. Andrea Ng also spoke, about the long-term effects of treatments. What a blessing to know my trust is in God for my hope and future, and not in her numbers because they don't look very good! The session ended with 4 different blood cancer survivors sharing their stories. So awesome to hear how they are doing well in life now, and what they've learned from their cancers! <br />
Then it was off to lunch. Amelia, Dan, Danielle (all from Cleveland) and I went to lunch with Stacey, a new friend I made in the focus group. It was another beautiful day, and we enjoyed it. When we got back, we needed to set up as Amelia is an exhibtor for RBC and Dan was conducting a research study on guys with cancer, and wanted to spread the word! After set-up, Amelia and Danielle went to the first-timer orientation, and Dan and I manned the table. In the blood cancer session, they had mentioned a magazine that wanted to publish survivor stories. Their table was right across from ours, so I went just to say hey I'd love to share my story. Gwendolyn was free, and asked if she could interview me right away! It was super awesome to share my story with her, and I'll let you all know when it gets published :)<br />
After that I went to my first-timer orientation. It started with a mega rock-paper-scisccors competition, to meet people! It was super cool to meet the welcome and steering committee. They all shared their tip for enjoying CancerCon. One theme was that people "get" you. It's ok if you take your time down the stairs, or take the elevator up for just a flight. Or have to sit down. Or so many other little things that I do because my body has taken a beating. <br />
After orientation, the opening ceremonies began. WOW. So much energy. They showed a lot of video clips of how far these convetions have come (13 conventions, in Vegas and NYC since 2008). From a small group with a band to this incredible convention. It was also time to welcome Kenny and John, who drove the stupid cancer car on a road trip around the USA, ending in Denver. You'll see some pics of the car on IG. They segued onto the platform, in a fitting end to their 4th road trip! <br />
Two other people spoke. First, Alli Ward, who organized CancerCon. Her bio slide called her a cancer thriver. She lives with cancer, and takes chemo for as long as she can, then takes a break, then continues. You would never guess from her vitality. What she has done is absolutely incredible. <br />
The other person was Matt Zachary, the founder of I2Y (I'm Too Young for This) which has morphed into stupidcancer. Given just months to live after a brain tumor, he'll celebrate 20 years in December. Hearing his incredible story, and how he took what he didn't have (other young adults, resources) and had the vision of stupid cancer...beyond incredible. I hope to share his story here at a later time. <br />
After the opening ceremonies, we went to the exhibitor area. There are abotu 60 exhibitors. They had an exhibitor passport-get it stamped by all the exhibotrs, and you're entered into a drawing. Danielle and I went around and completed ours, interspersed with some breaks to eat and man the RBC table. It was awesome to get to see and meet all the exhibotrs. Therer were the usual hospital and pharmaceuticals, but there were so many other cool organizations. There were several on cancer retretat/trips like hiking, kayaking, etc. There were a number of cancer specific group (brain, colon, breast). There were also bone marrow tranpslant groups, Immerman Angels, college scholarship group, and many others! We ended up with tons of cool free stuff, and many new friends! UH had a photo booth, so Danielle and I were taking pictures when Matt Zachary arrived. We were thrilled when he agreed to join us for a picture! The props included word cut outs that had different sayings. He held one that said "Who in the world is Matthew Zachary?"! We got some nice pics, and it was <br />
fun! Danielle and I were both quite tired, as it was already 8pm, so we went to our rooms to rest. <br />
We reconvened at 9PM, for a scavenger hunt! We had met Abi from Washington state that mornign at the RBC table. She is just a month older than myself, and in college for nursing. It was really fun to connect with her, and we agreed to make a scavenger hunt team. We found two other girls, to bring us to the team minimum of 5. May is from NYC, and works for a breast cancer non-profit. Courtney is another survivor, from California. We were given a list of places/things we had to get pictures of. Some required the entire team to be in the pic, so someone else had to take it. Others had fun requirements, like only 1 person from our team, and such. We had to take pictures, and email back to HQ with our team name, which was Spice Girls. The hunt took us around downtown Denver a little bit, allowing us a chance to see some of the city. There were small groups of committee members, all dressed up, on the move and we had to find some of them to take pics. I"ll post more about it later, with pics hopefully. The funnest part, I think, was meeting Aflac, THE REAL DUCK of AFLAC!! I knew there would be a duck, but was shocked that it was real! He was so cute, and loved looking at himself. Made it easy to take a selfie with him, cuz he kept looking at the camera! He loved my necklace, earrings, and other sparkly stuff! For posting with the hasthag #cancerisforthebirds, Aflac donates $2/post to cancer research! <br />
I think the most incredible thing was being with survivors. Four out of the 5 of us had cancer. We were a fiercely competitive group, determined to win (we'll find out later in the morning). But we had a common thread. We were tired. We couldn't walk very well. Stairs were very difficult for us. We weren't going to make it dashing across the street (though we tried). But we understood. I knew what the others were going through, and they knew what I was going through. I can't even explain how incredible it felt. I didn't have to hesitatnly ask, "hey mind if we find an elevator?". They were already searching for it. To go up 1 floor. It was aweseome! <br />
We were one very tired bunch, and I slept really well last night! Now I'm off to start a brand new day! First off, 15-25 years olds breakfast on friendship! Have a good day peeps! Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-19615013132033182832015-04-24T01:50:00.001-04:002015-04-24T01:50:24.250-04:00Denver day 2Hey everyone! It's been a long day and CancerCon hasn't even officially started!!<br />
For starters, the time change had me up early. Combined with adrenaline and a huge late dinner, didn't have a great sleep last night. But it was a productive morning!<br />
First Amelia and I registered. I got a cool Cancer Con t-shirt, a lanyard with my name and city, along with an orange tag that says first-time. Our schedules are printed on the back of our tags. I also got a registration bag filled with loot! They had thoughtfully included snacks, water bottles, notebooks, and some toys. After registering, Amelia and I grabbed Starbucks for breakfast. All the Cancer Con people wear stupid cancer clothing, and combined with the lanyards, it's really easy to know who is here for Cancer Con and strike up conversation.<br />
After breakfast Amelia went on a Rocky Mountain tour for the day. My first order of business was to complete home work for a Seattle Genetics pharmaceutical focus group I'll be attending tomorrow morning. They had asked us to review 4 drug websites, and provide our thoughts, comments and suggestions on improvements to these websites.<br />
Afterwards, I went out to buy toothpaste (which I forgot) and look around a bit. Our hotel is at the start of 16th Street, which is apparently the place to be in Denver. They have a shuttle that just runs up and down the street, but it was a really pleasant morning so I walked. There are all sorts of restaurants, shopping, kiosks, benches, flower pots, and panhandlers along the way. Generally it was quite nice, and a very enjoyable walk. I caught my first glimpse of a mountain!<br />
Back at the hotel I did some studying, painted my nails and then rested. Today I'm feeling the altitude much more, and have been a bit breathless.<br />
Around 3pm Steve G and Danielle arrived. Steve is a 3-time survivor, and his family foundation was one of the sponsors of the scholarship that let me come to Denver. Danielle and I had the same diagnosis of HL 4b, and she is just 6-months out of treatment. We've spoken via social media, but it was super awesome to finally meet her in person. We were hungry so walked down 16th Street and found a farm fresh restaurant Modmarket. I got a chipotle steak sandwich which had an incredible aioli and free greens in it. We made a quick stop at Rite Aid because we all needed stuff. I got Epsom salts, which I forgot to buy in the morning. My nurse has been strongly recommending it for my pain, so hopefully I'll try it tomorrow.<br />
Once we got back to the hotel, we all split up and rested. Later, Danielle came and did make up for me. She is really into it and I loved the smokey eye that she did! It was a fun girl-time thing to do!<br />
In the evening, there was a meet and greet across the street. It was fun to talk to meet other people who'd had cancer when they were like 20s, and see them married, with careers, and doing well in life.<br />
But my favorite part was the networking. I met Mark from Australia, who is working for AYA there , and Toby from UK. I also got to meet Matt Zachary, co-founder of stupid cancer! It was incredible to see so many people, from across the globe, coming together to fight AYA cancer. So many people who are using their cancer experiences to fight for future cancer patients. It was just really incredible to meet them and see how they have gotten busy living!!<br />
I'll post pics on fb now, since it is much easier for me Good night!Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-6381681608179654358.post-74349913305595414022015-04-23T01:50:00.001-04:002015-04-23T01:50:34.372-04:00Denver!!I landed around 7pm (Denver time). My AYA coordinator Amelia was on the same flight. We got our luggage and then went for the shuttle. Downtown Denver reminds me a lot of Cleveland. It isn't as big as I was thinking, and the layout reminds me a lot of Cleveland.<br />
I can't wait to see the mountains. There was a storm when we flew in, and then it was dark so I haven't seen them yet. On our shuttle we met another CancerCon attendee, who started the first collegiate stupid cancer group! Amelia went straight to her room, as it was midnight Cle time by then, but I was hungry! There is like a little mall right around the corner, so I was able to get a burger from a place there. Definitely the biggest burger I have ever eaten! I hadn't eaten for 10 hours between flying and hydrating instead so I polished it all off.<br />
Tomorrow I'll register, explore some, meet people from Cleveland, study a bit and relax.<br />
The hotel has a huge stupid cancer logo on all the walls. It's pretty sweet. It's also really weird being in a big hotel room all by myself.<br />
There is a huge bear looking into the convention center. I'll take a picture of it tomorrow.<br />
Well it's late either time zone, so Ciao!<br />
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