Pilgrimage to Troldhaugen- 10 yr BMT reflections

 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.

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.

My eyes overflowed the entire house tour too.  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.

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.

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 Wedding Day at Troldhaugen. 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.

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.

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.

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.

And the music hasn’t left my life. Yesterday, I played Blessed Assurance 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.

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! 

Jen's 10 yr fundraiser

Waterproof Mascara ( so crying is ok)

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

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

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

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

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

I'm Going to Denver!

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

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

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

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

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

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

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

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

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

The Best is Yet to Come!

I know it’s been quite a while since I posted; Thank you to the many people who pray and encourage me, and I know I owe you an update. Also, this is like the fourth time I've come to edit this post, so I guess it’s time to just post it. So here it is.

Physical

As far as the cancer goes, I am now approaching 2-years since my BMT (March 18th, 2013)! While I'm so grateful to be cancer free, there are many other issues that I'm currently dealing with. This summer my sugars, which tended to be high when I was on steroids, suddenly skyrocketed. I'm currently on insulin and medication to hopefully bring those numbers down. Also, I've been having some breathing troubles, which are definitely NOT helped by the record setting cold temperatures here in Cleveland as of late. The breathing issues definitely make me much more tired, which just makes school harder.

In February, I was in the hospital for 2 days, due to numbness in my hand; the doctors originally were worried about it being a seizure or stroke, but thankfully it was probably just a pinched nerve. About a week later, I went to the ER with severe abdominal pain. The current thought is that it is liver/gallbladder issues, post-chemo.

Upcoming appointments during my spring break:

• 2-yr post-cancer scans!
• 3rd round of vaccines
• GI doctors, for liver/gallbladder issues
• Endocrine for sugars

Academic

In school I'm currently starting my 5th of 10 semesters, so nearly half-way through! This has been my hardest class load ever, as I'm hitting the hard core engineering classes. Sometimes it gets discouraging to not see my grades as high as I'd like them, but I know this is where I'm supposed to be. This past fall semester was extremely tough, but this spring has been going much better! I'm excited for the friends I've made in classes. Please pray that I'll be able to get good grades this semester.  I'll also be taking classes this summer, and fall, as well as spring 2016, going for a total of 5 semesters back-to-back, so I'd greatly appreciate your prayers.

Other stuff...
Written on a rough day early this semester. Thought I'd just include it.
In other words...
2014 was a really tough year. Sometimes I thought it tougher than fighting cancer. With cancer, there was a definite, attainable goal in sight: beat it. I knew what I had to do, each day, every day. People were there for me. I felt supported and strong, and knew what I had to do.

This past year was really, really different. I had a fantastic spring semester. And then I started my 2nd summer internship with Swagelok; again, another great time. But through the summer different health issues came up. I thought that I was done with cancer. Great! I'm done with all treatments and medications! Not true. My sugars started acting up, my skin was scarily dry, my stomach started being weird. So many different things that were stark reminders that I wasn't the healthy person I thought I was.

The fall semester was incredibly tough. It was a difficult course load, but also done without my awesome friends. It was rough not knowing ANYONE in the class. I didn't really have the confidence I used to have to make friends. All the kids were there in their freshman cliques, and I didn't fit in. One girl even went so far as to ask me "aren't you older than the rest of us?” It hurt to see other kids making friends with random people, exchanging phone numbers, forming study groups, while I was all alone.
Continuing on to finish the story from earlier...I wasn't looking forward to 2015. The last year that I made a concrete set of New Year's resolutions, and was fully committed to fulfilling each one, was in 2012. I was initially diagnosed 10 days later. Again in 2013, I had my 2nd diagnosis to look forward to. In 2014, I was super sick all of Christmas break, so just being able to go to school was accomplishment enough. This year, I was just too discouraged to even think about making resolutions or setting any goals for myself.

In January, on my 3-yr diagnosis anniversary, I attended The U, a monthly gathering for young adults. The message that night was that "this is God's year to act (Luke 4:18)". Pastor Josh Pancher said "you either approach the year with faith or fear. Faith approaches the possibility. Fear approaches the problem." I realized that I was approaching 2015 with fear. Fear of not doing well in classes, fear of getting cancer again, fear of all the side effects, fear of not making friends, fear of so. many. different. things. Pastor Josh went on to say "for every problem, find a promise." I've gone back to the promise God gave me when I ended my first cancer's treatments, from Jeremiah 29:11. 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. I realized that God's promise to prosper me, and to give me "hope and a future" were still true-the best is yet to come. That message ended with 5 things to do.

• Encourage often
• Honor always
• Give generously
• Serve faithfully
• Live boldly

While I could think of things that I were doing in most of the categories, I realized I wasn't living boldly. I was cowering under the weight of what might happen, not living boldly in the promises of all the good that God has allowed to have happened.

Just to list out a few things God has allowed to have happened in this New Year...

• Made an awesome new friend, who is in a lot of my classes- Annie <3
• Made wonderful friends through the U on Campus Bible Study
• Been able to share my testimony at Standpoint, the college group at Parkside Church, which has also led to new friends...
• New friends, and prayer partners through the Cancer Support Group at Parkside Church
• A warm and loving church family
• Been able to again be involved with BEST Medicine Science and Engineering Fair
• My hospital stays have not had anything major come up
• Been able to manage in my classes
• Got a dog :)
• Will celebrate 2-years from my BMT on 3/18/15!
• A scholarship to attend CancerCon, a conference for young adult cancer survivors!

A verse that's been encouraging me, and the one from earlier...

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, ²¹ to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen-Ephesians 3:20-21

And as always, to close with a song; this one has been running through my head almost daily since I heard it at a conference...

You stood before creation
Eternity within Your hand
You spoke the earth into motion
My soul now to stand

You stood before my failure
Carried the Cross for my shame
My sin weighed upon Your shoulders
My soul now to stand

So Ill stand with arms high and heart abandoned,
In awe of the One who gave it all
So Ill stand, my soul Lord to You surrendered
All I am is Yours
~ Hillsong

BMT Birthday-my side!

So I'm sure most of you already saw my BMT Birthday post (as made by my siblings)! But that wasn't all my incredible family did to make the day special...
It really started Monday night, with Rachel helping me pick and coordinate a special outfit to wear.  And she also did a lot of other things, but I didn't know that yet!

8:45AM- Studying physics with my friend, when in the middle of a problem...
Ean: Hey, happy 1yr anniversary of your BMT
Jen:What??! *mind wondering how he knew-did I tell him, my blog, etc*not talking, just thinking
Ean: It is today, right?
So my lovely sister borrowed my phone and texted him to tell me...

2:05PM-In my car, checking my phone after my class
Mom(text): Where r u?
Mom(missed call)
Jen(calling Mom back): Hey (and other niceties)
Mom: Where are you?
Jen: Just finished up at Olin, coming to Honors.  Where are you?
Mom(evading question): Oh, okay.  Have a wonderful day, I love you (other mom niceties).
Jen(to self): I think they're at Honors. 

And so they were! With a HUGE platter of cookies, and a beautiful hand-decorated bunch of balloons! Their fool-proof surprise plan was coordinated with Sharon...who just happened to be in Cincinatti that day.  So I hadn't told her my schedule changes; so she told my fam where I should have been; I was not there; they called Sharon; she didn't answer (or know); they had to call me.  All's well that ends well. 
It was lovely to enjoy a little bit of a beautiful day with my family! I can't wait for Spring Break, when I can be with them 24/7!

2:15PM-Had cookies, met Craig, Dr. Mugler, Heather...walking to my next class
Mom: Did you see your blog?
Rachel: You shouldn't tell her! It's a surprise!

5:15PM-Finally at a computer-agenda:check blog! Surprised!!!!
Jen(showing Craig):Look what my family did!
Craig: You have the greatest family!

I think that sums it all...I do have the most wonderful, fun-loving, crazy, talented, and fantastic family in the world.  And there's no other place I would rather be than with them.  Love you all!!

And...a huge "Thank You" to all my wonderful friends who have wished me a happy 1yr BMT, either through texts or in person! I'm so blessed to have so many wonderful people to support and stand by me through thick and thin!
P.S. More pictures to be added, so check back soon!

With my family on campus!

God's Tapestry

You're an inspiration to me! I, and from what I've garnered, many other cancer fighters/survivors, here it often.  But so often, when someone says that to me, it's when I've been having a really hard time, so I feel anything but inspirational.  The more I thought about it, however, I realized that I do have a much different story than most "normal" people.  I didn't choose to have cancer, not once but twice; I didn't choose to loose my hair, or end up in the PICU, or have a BMT.  But since these different events have entered my life, I've become a changed person.  I'm not the girl I was in 2012 B.C. (before cancer).

I believe in God.  I believe that He is an omniscient, omnipresent, and all-powerful deity that controls the events in my life. I believe that He saw fit to allow me to deal with cancer.  I've heard people try to explain away my cancer many different ways... 

• God only gives hard things to strong people that can handle it- Well I don't feel really strong
• God only chooses the best-Really? Because I think He should punish some evildoers instead
• God only chooses people who are faithful to Him- So follow God, and you'll get cancer

In short, I just attempted to say that there is no good explanation.  But the question still lingers, why does God, whom we associate with love, and peace, and good things, let bad things happen, especially to people who are trying to follow Him? This is an age-old question that has been asked, and why not? I've always known a "technical" answer: humanity has sinned from the beginning of time, (think breaking the 10 Commandments) so that ruined the perfect world that God created. 

Through my times of trouble, I thought a lot more about suffering.  Smokers get lung cancer.  That seems fair-cause and effect.  But what have little kids done to deserve leukemia? What did I do to deserve Hodgkin's, twice?! While I may look  like I have all the perfect answers and strength (then again, I may not look like it), I don't.  I've wondered why God let me have it. I've never gotten angry at God, just felt like He let me down. 

And then I realized He didn't.  God isn't asking me to go through something without providing me help and assistance.  How His heart must have hurt when he saw his son suffering for the world, knowing there was nothing that He, as God, could do to alleviate his son's pain.  I forgot that Jesus came to earth as a human; he experienced pain like I do! God promises to be there to strengthen and help me.  I've seen Him answer my prayers for physical relief.  But more than physical relief, He provides emotional relief.  My friend wrote this on a card for me: "Remember, God is with you...always."  I look at that every morning.  As a Christian, I know God is with me.  But always...that means no matter what or where, He is always with me.  I can rest in His promises to prosper me, and not harm me.  Sometimes its hard to believe that God will "work all things together for good." But I know that He always keeps his promises, and even though I wonder how this time in my life will work out, He already knows how it will!

I read an illustration that Corrie ten Boom shared when she spoke.  She suffered in a Nazi concentration camp, where both her sister, father, and nephew would die, because her family hid and helped Jews in their home.  She spoke about how our lives are like a beautiful tapestry.  If you look at the underside, it is a tangled mess of threads and knots.  Only those who see the top of the tapestry can appreciate the beauty of the weaving.  We only see the knots and tangles in our life, but God sees the top, and the beautiful tapestry that our life is being shaped into.   

My cancer has greatly changed me, I hope for the better.  I've learned to be more thankful for little things, like the fact that I get to finish a semester, or that I get to play the violin, or even that I could stay at home today, and not be in a hospital! I've learned to love a little deeper; for God so loved the world that He gave his only begotten son...If God loved us enough to send His son to share in our sufferings, surely I can seek to emulate that love.  I'm learning to look beyond the outside, and see people for who they are and how they are individually hurting.  I'm not saying that life is a bowl of peaches.  Sometimes I wonder what my life would have been without cancer...would I be at a different college, would I have a different focus in life, would I have a different group of friends, and so many other questions. Whenever I get entangled in the different life I might have lead, I have to remember the tapestry of my life.  Maybe I was on a course to get a plain woven one.  Maybe my cancer is putting zigzag designs in it, maybe its adding different colors.  I don't know. 

Maybe you're experiencing troubles in your life.  All of us do, at various times.  All I can say is that I don't have a concrete reason why God allows suffering into our lives.  But I do know that He will not give us what we cannot use His strength to overcome.  If you don't personally know about His love and strength, please feel free to comment on my blog, and I will get back to you.  Thanks for reading.

P.S. Through this post I just wanted to share with you a few of the spiritual issues I've dealt with.  This is an extremely raw posting of what I've sometimes struggled with.  Thanks for understanding. 

Celebrating Life!!

So today was my T+100 day, and thanks to my awesome family, I've had an absolutely incredible day!!

It started out like any other day, except  I was so excited I got up at 4:30 am and had to force myself to sleep another hour.  But it was during lunchtime that my family turned a special day into an extraordinarily special day!

I'm so blessed to have such a caring and thoughtful family.  I'm so happy to have had such a wonderful opportunity to share what a loving family I have. Thanks so much guys~ you're the best!

The Delivery Crew

Another member...

Thanks Mom and Dad!!! 

Surprise visitors!

with balloons...

and chocolate cake...
and a tiara...
I wore this tiara through my BMT! 

and good friends to share it with!
Aaron, Connor, Brian and Brian, Brad, Tyler, me , and Janna.
~missing are Ari, Rachel and Kenzie, and Katy who took the picture :)
Thank you guys for celebrating with me!!
Thank you for being so supportive  and accommodating and kind to me!!

T + 100 Days!

So today is my T +100 day milestone!! 100 days from the day I got my cells back! This is kinda the first and last of the BMT milestones.  It's amazing to think that I'm there.  It seems just  a few weeks ago that I was so sick and in the hospital.  But it has been a while since I've been out, 69 days to be exact.

I'm so grateful to be with my family and having a wonderful summer. I've thoroughly enjoyed our family vacation, going to a friend's wedding, making many new friends, and so much more!

So here's what is going on medically at 100 days.  I had several scans that needed to be done, and I'm in the process of getting to those:

• Echocardiogram -ECG: tests the heart function, especially since some of my chemo meds are known to greatly affect heart function. Thankfully I haven't yet seen any heart damage!
• Pulmonary Function Test -PFT: tests lung function.  My earlier PFT showed slight damage that the doctors attributed to radiation.  But my last PFT showed more damage, so I will be seeing the pulmonologist soon.  
• Infectious Disease -ID: I'm seeing them today to determine the plan of action! 
• CT and PET- I will have these scans on July 5th; please pray for good results.  
• Restrictions: I'll be able to eat fresh stuff again! I can go out a bit more, but with my lungs I still have to be careful of catching colds.  

Ruth, Rachel and I dressed up for the wedding!

Sharing bubble tea with new friends Kenzie and Rachel!
I'm really blessed to have made a  lot of new friends this summer!!

McDonald's with Ruth, Stacey, Rachel, Audrey and Abbey!
In hindsight, if only I had switched spots with Abbey we would have looked like a triple stack oreo! 

Rachel and I with Dr. Doug Osheroff, who we met on vacation.  

Daniel and I on vacation

With my wonderful parents

I"m so grateful that God has given me more time on this earth.  I want to make sure I use this second extension on life to honor and serve Him.
This song beautifully captures what I want God to always be to me...
You Are My All in All
You are my strength when I am weak
You are the treasure that I seek
You are my all in all
I'm seeking You like a precious jewel
Lord, to give up I'd be a fool
You are my all in all

Taking my cross my sin my shame
Rising again I praise Your name
You are my all in all
When I fall down You pick me up
When I run dry You fill my cup
You are my all in all

You are my strength when I am weak
You are the treasure that I seek
You are my all in all
When I fall down You pick me up
When I run dry You fill my cup
You are my all in all

Jesus, Lamb of God
Holy is Your name
Jesus, Lamb of God
Holy is Your name

A Day in the Life of a BMT Patient

I always enjoy a Day in the Life stories.  It's so much fun, and so informative, to follow what different people/occupations/countries do for 24 hours.  I've been trying to do 24 hours in my life, to give people a glimpse of what my life is like, and finally (when I woke up at midnight) I had the chance. To top it off, it was one action packed day! This day happened on March 27th, in the midst of the "Dog Days of BMT".

A few things before we begin: while I chronicled everything that happened in one 24 hr period, some entries are daily occurrences   These entries are noted with a double asterisk.  Also, I broke it up into three separate posts, so it's a bit shorter!  Just start reading with this post, and move on to the next two!

Things you'll need to know:
Vitals-Blood pressure, temperature, and pulse-ox measurements.  Scheduled to be taken every 3 hours;  when you are receiving transfusions, taken every 15 minutes.

Pole- there are three different units on Pole, which works out to nine different infusion pumps.  They beep for many reasons...
a) Syringe empty
b) Infusion complete
c) Pain medication nearly empty (2 hours left)
d) Air-in-line (extremely temperamental, can go off in 2 minute intervals)
e) Occluded line
f) Low battery on one of the 3 units
Except for the last one, a nurse has to come and fix it.  The beeps are loud and sharp, and sometimes can be a real nuisance to both patient and nurse. Nurses should get an award for dealing with beeping IV pumps.  Go Nurses!!

Emesis-I haven't recorded every single bout of diarrhea or vomitting, just the major ones.  Something comes out one way or the other usually every 45 minutes.  I know it's kinda gross, and I  didn't want to include it, but my sister said that then I wouldn't be presenting an accurate picture.  She's right, I guess.

A Day in the Life of an Autologous Bone Marrow Transplant Patient

**1AM-Wake up to find I had a bout of diarrhea.  Wash/clean up.  Nurse comes and gets vitals and blood sugar reading.  Exhausted collapse back into bed.
The high doses of steroids I received on chemo have made me temporarily diabetic.  I'm on a constant insulin drip, so I test my blood sugar every 4 hours.  

Half-asleep with a temperature probe under my tongue

**4AM-Wake up to find I had a bout of diarrhea.  Wash/clean up.  Nurse comes and gets vitals and blood sugar reading, which is kinda low.  Forced to drink some juice, which tastes disgusting. Exhausted collapse back into bed.
The chemo has coated my mouth, so that my taste is greatly altered.  For instance, apple juice and yogurt taste spoiled to me, and fish crackers tasted like cardboard.  It's really difficult to eat when everything tastes so weird.  

Checking my sugar- by now I can do while mostly asleep

Even the tastiest of treats can taste bad with chemo

**5AM-Wake up to find I had a bout of diarrhea.  Wash/clean up.  Nurse comes and gets vitals, along with weight.  Exhausted collapse back into bed.  Two minutes later, say hello to the juice from 4AM.
The past few days I've only been puking about 4-5 times a day!  Which is an improvement from earlier this week, when I was puking every other hour.  My throat is really raw, which makes throwing up really painful.  Also, because I don't eat anything, there is practically nothing to bring up, which triggers painful stomach cramps.  

6AM- Wake up to find nurse accessing my Mediport, because I have a fever. Start two new antibiotics for the fever.
So far, they've only been using my tri-fusion catheter.  Protocol demands that the Mediport be accessed  when you have a fever.  Blood cultures are drawn, to make sure the fever is not the result of an infection, but broad-spectrum antibiotics are started as a precaution.  You are confined to your room until you have been fever free for 24 hours.  

**7AM-Wake up to find Doc Brown making his daily visit.  Answer his questions and show him my mouth, all while still half-asleep.
Dr. James Brown is the pediatric resident assigned to me, and he is a very caring doctor.  He finds out about what went on in the night, and if there are any new issues or complaints that I have. On rounds, he will present my case to the oncologist.  

Doc Brown, Mr. Smiley, and me

9:15 -Make it to the bathroom this time!! Wash up, wipe down, and get fresh clothes for the day!
I brought a suitcase full of my own clothes, including shirts, skirts, hoodies and cardigans, scarves and socks, and night clothes.   I didn't bring any t-shirts, only button-down tops, because it makes accessing my tri-fusion catheter and Mediport so much easier.  I find that being in 'normal' clothes (versus hospital gowns) makes me feel much better, not to mention hospital gowns are usually too small for me :) It's important to me to change each day, to feel fresh and ready to face the day.  There are laundry facilities in the ward, and my family washes my clothes periodically.  I also brought some of my own blankets and pillows, to make it feel like my own.  

**9:45- Join my medical team for rounds.
"Rounds" happen every day, including weekends, and each patient is visited.  The attending oncologist and fellow, nurse practitioner, resident, social worker, and various other medical professionals are all present.  The assigned resident presents the patient's current physical condition.  Any issues, complaints, or concerns are addressed;  blood work and medications are reviewed. It is a chance to present everything to everyone at once, and generally make sure everything is in order.    

On Rounds...notice how packed the hallway is! 

Dr. Brown presenting my case to Dr. Petrosiute

10AM- Come back from the bathroom, and collapse on the bed with a racing heart while feeling dizzy.  Within minutes, I'm surrounded by 2 nurses, 3 doctors, a physician assistant, nurse practitioner and my mother, all extremely worried.  My blood pressure is dangerously low, my limbs are swollen, and my hands are tingling. After several minutes, my heart rate begins to slow, and I fall into a deep sleep, surrounded by my amazing medical team.

10:45- Because of what happened earlier, the doctor has ordered an EKG.  The tech arrives and I get one done, while still in my bed.

**11:30- The cleaning lady arrives.  She comes every day, and cleans the whole room.  I love a clean room!

A Day in the Life...Noon to 5PM

12:30- My blood pressure, which they're now taking every hour, is still extremely low, and everyone is worried.

1:15- Doctors order a blood transfusion, because my hemoglobin is only 8.4
Normal hemoglobin (or the level of oxygen in the blood) is around 13-15.  Oncology patients typically have a hgb of 10-12 (which can quickly drop), and 8-9 automatically means you will receive a blood transfusion.  Low hemoglobin results in dizziness or fainting, feeling really cold, looking pale, and extreme fatigue, among other things.  Teenagers are the most sensitive to changes in their hemoglobin, and don't do well with a drop in their levels.  

A bag of blood I'll receive

**1:30- Facetime with my awesome fam!!
One of the awesomest things about technology is being able to Facetime or Skype my family, sometimes multiple times a day!  It helps me get to see them daily, and share in their lives for a few minutes.

**2:30- First bag of blood arrives, and I start transfusion;  I drain the juice from a fruit cup.
My blood type is B+, so whenever I get transfused I always remember to be B+! Also, most days I receive platelet transfusions, because of extremely low platelet counts, which is an elevated risk of bleeding.  

2:50- Start IV Kytril, my main nausea med.  Turn on the Food Network, and pull out a little hair while I watch TV.
I've been on so many different nausea meds, it's ridiculous. But what my nurses find hilarious is that basically the only TV I ever watch is the Food Network, even though I can't eat anything!! I enjoy imagining the tastes and smells of the beautiful food I can see;  I also love to cook and bake, so with shows like Chopped I imagine what dishes I would make!  

3:00- Jen, with Smiles with Style arrives with her cart.  I get a lovely tiara, to cement my princess status, and cutesy little flower nail stickers.  I feel beautiful!
Like I blogged earlier, the love shown me is amazing.  Jen brought a cart full of "beauty supplies", and went to each room to spread a little joy, whether it be dress up supplies, lip gloss, or nail arts.  Thank you wonderful volunteers!! 

One Jen holding a mirror for the other Jen!  

What a wonderful idea! Thank you for making me feel special! 

 3:20- Dr. Petrosiute and Kristen, the BMT nurse practioner arrive, because my blood pressure readings are really worrying them.

**3:40- The second bag of blood begins transfusing.
Normally I receive multiple units of blood or platelets. 

4:00- Dr. Matloub and Linda Wakefield, arrive;  They notify us of an airborne water bacteria outbreak.
There was an unexpected outbreak of Legionella bacteria.  However, the bacteria was quickly caught, and drastic measures were implemented to help ensure the everyone's safety.  

4:10- Dr. Bhaskaran, the oncology fellow manually takes my blood pressure.  Still low :(
Because my blood pressures have been so low, I get my pressure taken manually, since that gives a more accurate reading.  

Dr. Bhaskaran with the flashlight, and Dr. Petrosiute smiling in the back!  

4:40- All the blood transfusions finished!

A Day in the Life... 5PM to Midnight

5:00- The doctors are working on a game plan regarding my low blood pressures.  The fellow and residents each come in and talk to us.  If my pressure readings don't go up soon, I will be transferred to the PICU.
It is not uncommon for BMT patients to spend a few days in the Pediatric Intensive Care Unit (PICU);  the PICU has the advantage of a nurse in your room at all times, and much closer watch over vitals, or other special needs.  The oncology ward will even save your oncology room for you, so you don't have to transfer all your things.  Thankfully, I haven't had to go there so far.    

6:15- Anand and Catherine visit.
It is always a blessing to see Anand and Catherine, who lead Lighted Candles World Impact Ministries.  Anand brought an encouraging message from the Bible- by Christ's stripes, I am healed.  After the tumultuous day, it was a comfort to be reminded that God has promised to heal me, and is going to fully restore me.  Also, it was a blessing to be reminded of all the people praying for me!  

**6:25- New bags of lipids and TPN are hung- my steak and potatoes!
New bags are hung every evening.  The problem is, the new bags will set the Pole alarm of every 3-4 minutes, which means a nurse has to come, clear the line, and hope the beeping will stop!  

6:35 - Dr. Petrosiute confirms the plan to potentially move me to the PICU;  the PICU has been notified I might be coming.
It's always good to have a game plan, so that if there is an emergency, everyone knows exactly what to do!  

6:55- Dr. Matloub and Linda come back, and lay out the protocol regarding the bacteria- there is to be absolutely no water usage.  No one can open any tap, flush the toilet, or shower.  We get bottled water to drink, and Purell to clean our hands.
Wow!! You never know the worth of water until the well is dry.  

7:30- I receive my daily dose of Lasix
I"m on a 24 hr. saline fluid drip, to help my organs flush out the chemo.  However, my body retains too much of the fluid, which increases my weight, and causes fluid-retention in my hands and feet.  As a result, I'm weighed twice a day, and my weight is closely monitored.  If my weight is up, I receive Lasix, which helps flush out the excess fluid in my body.  The problem is...I potty-trot every 10 minutes, for 3 hours, after receiving Lasix.  

**8:00- Sheilka arrives, bearing idlis.
Sheilka is an Indian lady who befriended Mom and Dad when they first came to the USA; she and her husband are our adopted Indian grandparents.  They live minutes from the hospital, and visits several times a week.  Both times I've had cancer, Sheilka made different amazing Indian dishes that I requested, so that the spices masked the chemo taste in my mouth.  This time she brought idlis, steamed rice and lentil cakes.  They are plain, soft, and very gentle on the stomach.  I ate one, the first solid food in over 3 days!  She also brought a delicious red velvet cake, for me to share with the nurses!     

Sheilka and I

**8:45- Dad and Rachel arrive, and Mom leaves
Someone from my family tries to always be with me.  Either Dad, Mother, or Rachel (or a combination) spends the night with me.  They switch out every day, and there have been only one 24 hour period when one of my family was not with me.  It's a huge blessing to have someone with me 24/7.  They basically act like my slaves, running to fulfill my every whim and fancy, fetch food to satisfy my cravings, bring me encouraging notes, or help me when I'm puking or sick, among other things!  Thanks guys!!

One tired guy, in the middle of one tiring night

9PM- I force down two Tylenol pills, since I'm running a fever.
My throat is raw, so it's extremely difficult to swallow.  

I alternate drinking the sickeningly sweet medicine with water

Taking the pills; I think my face says it all

**9:30- Sheilka leaves;  I receive my Actigall
The original 12+ pills I was on daily were slowly switched to IV, as I was unable to swallow.  However, there is one pill I still have to eat every day- Actigall; it helps and supports the liver, and is very important.  It's a struggle, but I'm proud to say that I eat one everyday!! 

**10PM- Turn Food Network back on, while I wait for the Lasix to finish working.
Lasix works for a minimum of 3 hours, so even though I'm tired, I can't go to sleep!  I turn on the TV, because at this late hour there isn't really any noise- I miss the noise of the family; the TV is a poor substitute.  

**10:15- Prepare for bed.  Text Mrs. Libassi and Christina.
Their son/brother Sam just had an auto BMT 2 weeks before me! It was so nice to be able to know what to expect from him.  Check out his blog at 

**11 PM -Go to sleep

My sister took this picture of me and my can't-sleep-without-it -dish 

**11:15- Wake up and puke.

I didn't know if I should include this picture...but hey, it's reality! 

**11:20- Back to sleep.  Until I a) have diarrhea b) puke c) Pole beeps d) the nurse needs vitals
Good night.

A Bad Hair Day

Everyone has had a "bad-hair" day.  Since yesterday, however, I'm having a no-hair day!    While people have been shocked that most of my hair has stayed in tact so far, little bits of hair have been falling out over the last several weeks.  Last night, however, my hair decided it was through with me!  Just running my fingers through my hair produced thick black strands, which I dropped into piles on the floor and on my bed.  Now, I'm down to a "baby ostrich" phase/look.

I think one of the biggest physical signs we associate with cancer is baldness.  Chemo attacks the fast growing cells in our bodies, which includes our hair and nail cells.  Last time I had cancer, my hair hung on for quite a while, and I never went completely smooth, just all the way down to a few wisps, tactically redistributed!  Since the majority of my hair stayed this far into transplant, I had settled into a pleasant anticipation of keeping my hair (a few BMT patients have kept all their hair!)

As a girl, I always enjoyed trying new hairstyles, finding new accessories, or even simply washing my hair.  So it is incredibly tough to go bald.  While I can't say that I experience any raw emotions, I know that there is a very subtle, yet intense inner emotional component that gnaws at me.  For instance, the inner pain compounded into a major meltdown at 2AM  last night!  Every time I see a pile of hair, my hair, I feel a sharp twinge of emotion.  Sometimes I just feel really sad that I'm going bald; other times I feel stabs of loneliness of being in the 'exclusive' bald club.  But one of the hardest elements overall is watching my parents watch me. Their faces convolute with incredible emotions, including sadness and helplessness.  I have a therapeutic habit of pulling  gently taking my hair out (which my parents beg me not to do).  There is something weirdly comforting to feel the coarse strands of dead hair;  it's kinda like I'm saying goodbye to my hair.

A bit of the hand-picked deluge...more pictures in the next few days!

When I entered college last fall, my head was completely shaved. It was extremely difficult at first, as I saw hair color, style, and lengths of all sorts.  One of my biggest coping methods was wearing loud or big earrings that made a statement. I figured that since I didn't have the privilege of choosing different hairstyles, earrings were as close as I could get; they also filled the feminine gap I felt. Sometimes I hid under a colorful scarf.  As the semester progressed,  my hair started to grow.  Understanding and supportive friends complemented me on the baby hair bows, glittery headbands, and teeny barrettes I started putting in my hair;  thank you college friends, for supporting me and helping me regain some of the self-esteem and confidence my hair stole from me.

 Half-way gone...

A little help to hasten the departure...Joseph and Daniel pulling my hair when no one else was around to stop them :)

Last time I faced the bald challenge with the help of handmade crocheted hats from a dear friend, a bear hat from my dad's coworker, and other whimsical hats.  All in all, I think I'm ready to face this new "bald battle" again!  I know I'll get through this with the help of my dear family, wonderful friends, and "ever present comfort in time of trouble" the Lord.
For the hairs of your head are numbered [by God]...Matthew 10:30 He cares enough to count them, and so He will take care of me!!

 Starting to see my scalp...

I've gone 'smooth' in the back! 

P.S. This post feels really awkward and disconnected to me, and I'm sorry.  I just wanted to write something down now, before the sharp pain dims to a dull ache.  I feel this is just a diary of a few of the thoughts that have been swimming in my head today.  

The Dog Days of BMT

So since my last post was on dogs, this post is on the dog days!  Credit for this term goes to this week's attending oncologist- Dr. Agne Petrosiute.  It certainly describes these last few days perfectly,as they have been really rough !

All my blood counts have bottomed out, so there is only one direction to go now- up!! Now I'm waiting for engraftment day-when my  blood counts double for three days in a row;  when that happens is different for each person.  On average, it takes about 2-3 weeks for engraftment.  Today is my one-week mark!!
So far I've been experiencing a lot of  pain, puking and diarrhea- all of which makes me extremely tired!  The chemo destroyed the mucus lining of my GI tract, causing what is called mucositis.  Because there is no lining, my throat/esophagus is extremely raw.  As a result, I pretty much can't swallow.  Since the lining in my stomach is gone, almost everything I do manage to get down comes right back up.  It's amazing how much I can bring up, cuz there are times I'm sure there is nothing left in my stomach, but somehow stuff does come up....
I'm getting my daily calories from TPN, or IV food.  The nurses always tease me about my "steak and potato" bags!  The taste in my mouth is also altered.  So pretty much everything has a weird, flat, chalky taste.  
I have some pain in my throat, but also a sensation like heartburn in my esophagus.  For the pain, I am now on a PCA pump-Personally Controlled Anesthesia.  The pump gives a constant dose of pain medicine (in my case Dilaudid).  However, I also have a button I can press up to every 10 minutes, to receive a bolus of pain medicine.  This has really helped me with my pain.

Praises
My counts have reached 0, so now they can only go up!
The nausea is becoming somewhat manageable!
No fevers so far!!

Prayers
Counts to quickly engraft
Vomiting and diarrhea to stop completely
Pain to diminish
No fevers or other infections

Here is Pole 2.0- bigger 'n' better.  I had no idea what a hit it was!

The black line is my PCA.  The yellow is my 'steak' and the white my 'potatoes'.  There are three different modules, running a maximum of 9 different bags (nausea and pain medication, antibiotics, TPN, fluids, and more!)  .    

 Today I was strong enough to go to the craft room and make some jewelery.  Notice the ever prominent puke bowl :)

Some people will do anything for a laugh...(they both are usually dignified nurses)

How they walked the entire floor is still a mystery to me. I wish I could have followed them with a camera...Thank you ladies for making my day!  (I was laughing so hard I started choking- but as they say -Laughter is the Best Medicine! )

My Birthday: T-0!

Birthdays, what fun!  We celebrate with our loved ones, the gift of life we have been given.  I'm one of the privileged people to have three different birthdays to celebrate.  My first birthday, my natural birth, is one each human has in common.  I was born on August 12, 1994, a special birthday I celebrate annually.  However, I also have a born-again birthday- March 3rd, 1999.  That was the day I accepted Christ as my Savior  and received the gift of eternal life.
Today, April 18th, 2012, I celebrated what will hopefully be my last birthday- a second chance at life- my bone marrow transplant birthday.  This morning, around 11a.m., I received my own stem cells, that had been harvested about two weeks ago.  Surrounded by my family, nurses, physician's assistant and five syringes of stem cells, more than half a dozen pukes, Morphine, Ativan, and Tylenol and Benadryl later, I'm doing OK!  The whole experience was VERY unique.  The cells are frozen in something that smells like creamed corn (or some say garlic).  However, even the tasty smells of summer couldn't settle my stomach.   As the kids got kinda antsy, Angela took them for a walk, to let them burn of a little energy.  However, Rachel stuck it out, and got the whole thing on video,!  Now we're expecting my blood counts to completely bottom out within the next few days, before they engraft themselves back into my bone marrow.

With Linda, the Physician's Assistant, and Krista, the Bone Marrow Nurse Practitioner

P.S. Notice prominent puke dishes, and sweet lotions :) 

Getting my cells back, one syringe at a time...

With my parents, following my new birthday!  

Krista, Linda, and Margie, my nurse 
Thanks guys- All done with transplant!!!!

Angela entertaining the masked bandits, or vise versa :)

A few prayers and praises...
Praise God that I have received my cells, with minimal complications
Praise God for the wonderful friends who visit, pray, email/text/write me.  I appreciate your thoughts and gestures!
Pray that my sugars numbers would come to normal levels
Pray that my severe nausea and sickness would abate quickly!
Pray that the stem cells would quickly engraft