Tuesday, April 28, 2015


Hello Friends,

Just a brief update of life.  I'm home from Denver, where I had a fantastic time! A few prayer requests, if you will...

My last calculus test is this Thursday, 4/30.
Finals-May 4,6, &7.
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.
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.

As of today, my blood counts are at a 10.9!
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!
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.
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.
Insulin pump-the shots before every meal have gotten really old...please pray that I would speedily be able to get an insulin pump!

In conclusion, a verse I heard on the radio last night.

The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29He gives strength to the weary
and increases the power of the weak.
30Even youths grow tired and weary,
and young men stumble and fall;
31but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
Isaiah 40:28-31 (emphasis mine)

Last 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. 
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. 
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. 
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. 
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.
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. 
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. 
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. 
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.
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.
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.
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!

Monday, April 27, 2015

Denver Day 4

So 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.
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.
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.
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.
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!
Back to my room to pack up and get ready to finish out CancerCon!

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 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.
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!

Friday, April 24, 2015

Denver day 2

Hey everyone! It's been a long day and CancerCon hasn't even officially started!!
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!
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.
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.
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!
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.
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.
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!
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.
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!!
I'll post pics on fb now, since it is much easier for me   Good night!

Thursday, April 23, 2015


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.
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.
Tomorrow I'll register, explore some, meet people from Cleveland, study a bit and relax.
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.
There is a huge bear looking into the convention center. I'll take a picture of it tomorrow.
Well it's late either time zone, so Ciao!

Thoughts from the Air

 *A weird collection of thoughts on various subjects*
I'm some thousands of feet in the air. My game lives have run out, there is no free  Wi-Fi, and I don't feel like watching TV. My body, which has been in pain due to the steroids, is now crushing me with pain. No position seems comfortable. I try to will myself to sleep, but the pain doesn't allow me. So I turned to my thoughts. And my phone note pad. To write to you all. With my thumbs. Warning, I'm feeling very philosophical. My mood is brought on by two things. One, my AYA coordinator is on the same flight. Last week, at the monthly meet up I was unable to attend, they spoke about religion. We spoke briefly about God before the flight. The other thing is how many people, when told about this conference, asked if it was a Christian conference. No judgements passed, just fact, but I was really surprised how many people asked if it was a Christian conference. Answer: no it's not.
But I've been thinking. What is the church doing about this. This is the biggest conference of its kind, and quickly sold out. Cancer is an ever growing epidemic,  with no sign of diminishing. We are young. 15-40 is the official age range. Everyone goes through a time of questioning what they believe. Why do they believe  it. Is it their faith, or their parents faith. Reflect on your own life, no matter what your religion.  Did you accept or reject what you were taught to believe. Are you still searching for satisfaction?
Now superimpose all those feelings on pain. Physical pain, like I'm in now. Psychological pain, of never growing up or achieving your goals. Emotional pain, of the daily battle against cancer. That is us. The young adults of this cancer world. So many questions...  non-cancer kids have questions.  Imagine our questions. We didn't cause our cancers. We didn't have a choice. What random force of the universe destined Us to this exclusive club?
I believe in God. Not a god, the God. You may think that this is surprising, given my cancers. I've thought it surprising before. I have questions for Him. Lots. Of. Questions. Why did I get cancer? Why did I live? Why am I here still? Why did I get all these new diagnosis? Why do little kids, teenagers, adults have to suffer so much through cancer? And on. And on. I don't know the answers. I can't even guess at most of them.
God is sovereign. It's like math... Everything can be proved. It's like gravity. Stuff falls when you drop it. Normally  I don't stand there wondering why the egg fell to the ground. I know the egg fell because there is a mess on the floor. I don't wonder if there is a God. I see the evidence. Nothing can calm my heart, and no one can feel my pain like he does. I'm not trying to be spooky or anything. I have hope. We all crave hope. How else do we keep living? Each of us goes to bed with the hope that we will awake in the morning. We drive our cars in the hope that we will reach our destinations. Same thing. Everyday I drive the car of my life in the hope that I will reach my final destination: heaven.
I'm trying to explain this but I can't. If you don't have hope, God is there. Life is never hopelessness enough not to live.
To those of you Christians, share the hope you have. Cancer is a long and wearying  journey. Sometimes even I don't seem to have the hope to continue. Encourage others. Reach out. The hardest thing through my cancers was seeing Christians, who have the hope and love of Jesus, keep it to themselves. We are a hurting group. We can use a little extra love. Don't abandon us. Maybe you don't know what to tell us when you hear we Are diagnosed with cancer. Maybe you are scared to become friends with us because you think we will die soon. Maybe you are frightened of saying the wrong thing. I don't know what it is, but they are all excuses. We know you don't know what to say, or are uncomfortable  but we want you to give us a chance. A chance to help you out. Don't make trite statements  about God, or why he allowed it, or how he is going to help. You have no idea what we are going through or if we are even speaking to God right then but don't judge us. Say hi. You can text us good morning. You can say have a great day. You can ask how are we doing. You can send us are snap of flowers. Or a picture from a party. You are on social media, just include us! You can Skype us from the hospital (thanks Leah)  You can bring the latest movie to our house to watch (thanks MHS). You can just come and hang out ( thanks Christina, Craig,  Sharon). Maybe we'll  fall Asleep. Sorry. But the fact that you cared enough to come will never be forgotten. Drop of some fresh flowers. Or a silly balloon. Or a card ( thanks Heather)  Or a piece of chocolate in the mail ( thanks Isabella). Or a silly cartoon you think will make us laugh.   Ask us what you can tell us about your life. We are still teenagers. Ask us how you can help us. We can give you plenty of suggestions. Don't forget our families. Our siblings hurt with us. Our parents do too. Bring some treats for the sibs. They'll enjoy the movie too. Take them out somewhere special. They can use some extra loving. Bring dinner (thanks Simkanins,  Denise). Food is always welcome as it sustains life. Bake some cookies with the family. Bring the dog around. Send a fun scarf or headband (thanks April). Our heads do get cold. Send a pretty bracelet (thanks Jenni). Just because we are bald doesn't mean we don't want to dress up and feel pretty. So much more but I don't have time or space to list them all.
Whatever you do, do. Not. Be. Silent. Your silence hurts so, so bad. It still Hurts for me sometimes. I wonder what I did to cause it. You loose so much through cancer, the last thing you want to do is loose your friends.
For me, God gave me a totally new, unexpected, and amazing group of friends. Who did the things listed above. Who are still by my side, daily. Who I wouldn't trade for the world. I'm thinking of everyone of them who prayed I'd be able to go on this trip, and shared in my excitement. Who are praying even now that I'll have a good trip. Thank you is inadequate. Thank you for hurting with me through cancer and these new diagnosis. Thank you for staying with me, and encouraging me. Thank you for loving me and accepting me as I am. Thank you for texting me.
We are beginning a descent. Writing this has brought back so many memories of the love that has been shown me.  The bodily pain is still there, but my heart has found great joy in the remembrance of love.


Tuesday, April 21, 2015

I'm Going to Denver!

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

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

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

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

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

By Friday, all three prayers and "big things" were answered!
And to close, a very special verse to me.  I've always read vs 11, and claimed it for myself, but today vs 12 also jumped out at me.  That I can call on God, and pray to Him, and He will listen to me.

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

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

Wednesday, April 15, 2015

An Update and Thoughts

Ahhh....so much has happened in these last few weeks, and I feel like I could write forever and ever! To start with, I know many of you have reached out with kind comments regarding some of my Instagram pics (thank you!), but I know I need to get a proper explanation out to everyone! So to start this story...

*Disclaimer! I wrote this over two days. Some of it right after I got back from the hospital Tuesday, the rest on Wednesday. So please pardon the discontinuities. I feel like once I write something, I can’t go back and make changes (other than grammatical/spelling), so this is the raw stuff, out there for you to read!*

During my spring break, I had my 2-year cancer scans. They all came back clean with no cancer! Thank you Jesus! This was a huge relief to hear. Some other things about the scans though...

·         There was a spot on my liver that had increased in size since the last scans. I had an MRI done last Friday, and as of right now, it is believed to be nothing serious, just growth due to hormone therapy I was on for a lot of last year. I will be following up with GI for this in a few weeks.

·         In addition, I have had a lot of coughing/gagging reflex since this fall, which at first we thought was related to the weather. It does not appear to be related to the weather, however, but possibly an allergy of some sort that coats itself to the esophagus, and so causes that reflex. I will be getting an endoscopy for that, probably after school is over.

The biggest new thing, however, is diagnosis of an autoimmune hemolytic anemia. This is an anemia where the red cells die much faster than they are supposed to. Thankfully, my bone marrow is working overtime to make new cells, but this isn't a sustainable model. I had been feeling very tired and somewhat breathless, as well as had some other enzyme numbers kinda wacky, so everything kinda wraps up into a neat little bundle with this diagnosis. This is a more long-term condition, and I started treatment for it last Friday. The good news is that today's blood test showed that the treatment is working. The bad news is, however, that the treatment is high dose steroids, just a little bit less than what I was taking during active cancer treatments. With the steroids comes the many side effects...some of which are creepy-crawly sensation, hot flashes, loss of concentration, mood swings, headaches, extreme and constant hunger which have all manifested themselves so far. Long-term I am expecting numerous skin troubles, stretch marks, bloating, "snowman" look, and weight gain among other things.

A rather trivial matter, that for me is kinda big, is the weight-gain side effects from steroid. I finally was starting to feel like I was in an OK spot looks/weight wise, and had just started feeling good about myself. I know that the inside appearance is so much more important than the outside, but it still is so hard; the other factor is that this is a long-term treatment, so the end picture is looking bigger…

The biggest overall thing for me about the steroids is that they elevate blood sugars. This would be ok if I was starting at a normal range, but this time I am starting with some pretty high sugars. Currently my sugars are running about 4-5 times what a normal level will be. I am on a long-acting insulin that I shoot every night, and have started shooting insulin before every meal. Hopefully, I will be able to get an insulin pump in the next few weeks.

School has gotten increasingly difficult as well. The anemia symptoms (which I wasn't aware off) definitely affected my second round of tests. Now the steroid treatments looks like it will affect my third round of tests and finals. The steroid concentration issues have really affected me. I can manage to stay engaged 30/50 minutes of most class periods, and then I'm unable to focus! Thankfully, I have some really great professors who are helping me out with these issues!

Some things that I'd really appreciate your prayers...

·         The treatments would continue to work

·         Reduced side-effects from the steroids

·         Ability to finish this semester strong

·         Persistent cough to resolve

·         Sugar numbers to come down

·         Speedy delivery of a pump. A pump will make life so much easier, but it can take on average of 4-6 weeks to get one!

·         Mental strength through get through the treatments and keep checking sugars.

·         A strong finish to a really tough semester.

·         Ability to do well and concentrate on the last round of tests, and final exams the first week of May.

Also on these lines, I had received a scholarship to attend CancerCon, a young adult cancer conference in Denver, which is next weekend. The price of the trip was more than I could afford, but there were a few scholarships offered for it. Also, it is the weekend before the last week of classes-not exactly the ideal traveling time! I applied for some of the scholarships, and asked God if he wanted me to go, that he would bless me with one. I received the scholarship, which covers all expenses, and was beyond thrilled to be going to Denver. However, when speaking with my oncologist and nurse regarding the trip, they were very doubtful if I could go. Given the higher-altitude in Denver, my blood-oxygen levels are not high enough to be there. In addition, I have had a pretty bad persistent cough that is another concerning factor. I would greatly appreciate your prayers that I could go on this trip, if God wills. If my levels continue the current rate at which they are rising, it will reach the necessary threshold of a 10.0 next Wednesday, the day I'm scheduled to leave for Denver.

Well that wraps up the concrete, medical, and practical aspects. Now for the touchy-feely bit…

This unexpected maybe-turn-of-events kinda shook me up. I thought God definitely wanted me to go to Denver since he provided me the money; and then now it looks so uncertain...I was like God, I'd have been fine if you hadn't given me the scholarship because it would have been a definite “No” then. I felt so confused and hurt that God would let me have this incredible and amazing dream trip, and then seemingly/maybe take it away in an instant. As always, God brought a song on the radio to encourage my heart. It was a song that I first heard my first semester of college. I remember the night I heard it. I had gone to see my best friend at ultimate Frisbee practice. Almost everybody I knew or was friends with was on the ultimate Frisbee teams. I wanted to join them so badly. Some evenings we would just casually toss around the Frisbee on the grass behind Honors, and I had pretty decent throwing and catching skills. But I couldn't run. or dive. or jump. I had enough trouble walking, much less playing Frisbee! I wanted to play so badly. To find a club where I could belong. To join people I knew. And then that night I heard "Hold on to the Promises," by Sanctus Real So many encouraging words. When what I wanted so badly I knew wouldn't happen, I knew I was blessed to be alive. I listened to that song so many times through relapse. My sister made a poster that I had in my hospital room, which said "Hold on to the Promises. Jesus is Alive!"

Here are the lyrics:

Sometimes it's hard to keep believing in what you can't see
That everything happens for a reason even the worst life brings
If you're reaching for an answer and you don't know what to pray
Just open up the pages, let His Word be your strength

And hold on to the promises (hold tight)
Hold on to the promises (all right)
Jesus is alive, so hold tight
Hold on to the promises

And all things work for the good of those who love God
He holds back nothing that will heal you, not even His own son
His love is everlasting, His faithfulness unending
Oh, if God is for us who can be against us
So, if you feel weak

Neither life nor death could separate us
From the eternal love of our God who saves us

And then the same song came on the radio as I drove from Cleveland yesterday. And the words again comforted my heart. It is hard to believe that everything that is happening to me is happening for God's reason. I couldn't find the words to speak to God, but like this song says, His Word was my strength. Jesus is Alive! How many religions can say that their founder, teacher, leader and God is ALIVE!

A new line jumped out of this song for me-"He holds back nothing that will heal you, not even his own Son. His love is everlasting, His faithfulness unending. Oh, if God is for us who can be against us!" God will heal me! I don't know if it will be an earthly healing, but I do know that I can remain confident in an eternal healing! Everything will work for good. Sometimes it seems like everything is spinning into an ever-increasing frenzy of "bad things". I just want to be, like God, I've had more than my share of stuff. Sometimes I feel almost abandoned by God. What did I do to deserve all this pain? Why can't even the simple joy of a short trip be dangling ever farther from me?

And then this song. His love is everlasting. His faithfulness unending. The years that the locust of cancer and sickness has eaten away from my life ALL will be restored to me, as only God can. Neither life nor death can separate me from God's vast and immeasurable love. I don't have the words to pray to Him. But I know the words He has for me. Words of hope and a future. I feel so weak, physically, mentally, academically, emotionally. But all I have to do is hold on to the promises.

Last night at The U, Pastor Josh spoke about how we are a message of God's love. A brief paraphrase from 1 Thessoalonians 1-"It is clear to us, friends, that God not only loves you very much but also has put his hand on you for something special...you were able to take great joy from the Holy Spirit! - taking the trouble with the joy, the joy with the trouble...The news of your faith in God is out.". That is my prayer. That the news of my faith will go out. God has put his hand on me for something special. I don't know what. I struggle, just like you do. But I have a Holy Spirit which can and is providing me joy. Joy through sibling-like-friends. Joy through mother-like nurses. Joy through caring and compassionate doctors. Joy through the fellowship of other Christians. Joy unspeakable, such as only God can bring or give. I'm holding on to the promise that the Joy of the Lord is my stregnth.

Holding on to the promises doesn't require strength, and God knows I don't have much stregnth to spare. Words from another Sanctus Real song "Pray" seemed to fit my situation exactly.

I bow my head to pray, I don't know what to say
I'm not sure how to fix the things I'm dealing with
I'm in a desperate place, I need to share the weight
But I just don't know how, to let it all pour out
Though I'm silent, my heart is crying
Cause I was made to come to You

So I pray
God I need You more than words can say
Right here in this moment
You know my heart, You know my need
You know every part of me
So even if it's just to speak Your name
I'm gonna pray

What a comfort. So often I've heard that just ask God for anything you want, as He is a father, and loves me his daughter. But these past few days, I have no words. I have nothing. My heart just feels so full and tired and weary and discouraged and hurt. But I know God is here. And was there yesterday. And will be there for me tomorrow. And is there for you, no matter you’re hurt, or heartache, or body ache, or life situation. Hold on to the promises of God.

And to end, I use the closing words of Madeline. "That's all there is, there isn't any more."

At the new Rainbow Onocology Ward, the day I was diagnosed with Autoimmune Hemolytic Anemia


Sunday, April 5, 2015

Happy Easter!

Happy Easter! It is so incredible to think that this is the 4th Easter since I've been diagnosed! The first was spent alone at home, the second was spent in the hospital, the third was spent at one church, and this one at another!
It has been a long weekend, but a good one.  I was able to attend my first Good Friday service! Easter is a celebration, but it wouldn't be possible without Christ's death on the cross, which we commemorate on Good Friday.  Again, this year, I was reminded that Christ endured so much pain for me, and all mankind, so he knows exactly what I'm going through, even when I feel like other people don't!

One special song to me at the Good Friday service was "Jesus, Thank You."

The mystery of the cross I cannot comprehend
The agonies of Calvary
You the perfect Holy One, crushed Your Son
Who drank the bitter cup reserved for me

By Your perfect sacrifice I’ve been brought near
Your enemy You’ve made Your friend
Pouring out the riches of Your glorious grace
Your mercy and Your kindness know no end

Your blood has washed away my sin
Jesus, thank You
The Father’s wrath completely satisfied
Jesus, thank You
Once Your enemy, now seated at Your table
Jesus, thank You

And a few pictures of Easter through the last few years!

Happy Easter!