Saturday, April 25, 2015

Denver Day 3

So 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!
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!
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. 
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  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.
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!
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 :)
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.
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!
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.
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.
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
fun! Danielle and I were both quite tired, as it was already 8pm, so we went to our rooms to rest.
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!
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!
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!

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