Lucky 13

 I did it again. 

Exhaustion from my two hours of sleep last night overwhelmed me as I scrolled through the Lufthansa movie selection, marking the ones I wanted for the flight. Zootopia 2 has been at the top of my list, so I happily watched that before a spot of lunch and a nap. I walked around a flight packed with my coworkers before returning and selecting another one from my bookmarked list, Audrey's Children. The name niggled in my brain as something I had heard of before and noted wanting to watch. The description stated it was about a doctor and the children she wanted to help, and the open scene stated it was based on a true story. I settled in to begin. 

And just per my luck, it was about cancer. Two days until my 13th bone marrow transplant birthday, so I decided why the heck not, could be therapeutic, and continued watching the movie. And cried I think almost the entire two hours of the movie. There's the usual heaviness that accompanies me leading up to BMT birthday, and I had the typical triggers of hearing the chemo names. And so, sitting in my airport seat, I sobbed and sobbed, oblivious to my seat mate, or colleague behind me. The tears I don't allow myself to cry in my house were bottled up, and seemed to explode as a never ending fountain. 

But there was something new today.

A sense of gratitude like I haven't had ever before. For doctors like Dr Evans who pushed the status quo to find a better way and increase the survival rates for children like me. The movie glimpses into the weight oncologists carry, and I'm crying with gratitude at my many doctors. Dr Peter's with his funny ties. Dr Ahuja telling me what’s my hurry to go to college. Dr Picone with her contagious smiles and laugh. Dr Hackney following me in survivorship. Dr Letterio with his kindness and push for research and better outcomes for us. And dang it I know I'm forgetting so many- many with shaved heads in solidarity with the children they serve. The Fowler family, for ensuring we didn't have to sit in the drab and menacingly cold hospital walls, but could enjoy a colorful space suited for our age. My beautiful nurse Ceci who was my lifeline every moment of cancer, and afterwards. A beacon of hope and kindness in hell.

I saw the children in the movie and cried for the ones who aren’t with me. The little toddlers taking their first steps in the corridor, the nurses and I cheering them on as they held the IV poles. My little Spanish friend, doing our nails together and rubbing each others bald heads. The little kid in the seat in front of me is poking his head to look at me and play with the windows shade. I hope so hard that when he's my age the survival rates are even higher and that he will never know the devastation of loosing his friends.

I see the staging system in the movie, and follow along with it. Nodular sclerosis, Stage 4b. The most advanced staging of Hodgkin's lymphoma. Two weeks to live. I see the parents in the movie. Lately, I've been thinking a lot more about mine. How do you deal with the news that your oldest daughter has two weeks to live? I will never have a biological kid, and I hope never to know the pain they went through. How to care for their other children, how to afford treatments, how to make decisions. Some decisions have affected the rest of my life, and sometimes its hard to grapple with. I remember my dad bringing his sheaves of PubMed study articles and arguing protocols with the hapless resident who drew the short straw of dealing with the Anands. But I'd like to believe that my dad's challenges made them think, and muse on if they were actually fighting the hardest to be the best damm oncologist they could be. I've seen changes in protocols since I was diagnosed, some that I've been privileged to be part off directly and I'm sure my dad indirectly as well, but all of which will have a positive impact on the next round of cancer patients. A small beacon of worth for what we went through.

The movie follows Dr Evans at CHOP, Children's Hospital of Philadelphia. A scene cut to her looking at 4 Eagles players and my throat caught, as I remembered why I had heard the movie title before. The very first Ronald McDonald House (RMH) began in Philly, with the Eagles support.  The closing credits listed some of the facts of RMH, and my heart is overflowing with the gratitude of every single person who made it possible. It played a huge role in my families life, and I can't imagine how I would have survived without the hot meals my mom or sister would walk from there when I refused to eat. Or the times my oldest brothers could walk over to watch TV together. Or the fact that I knew my dad could have a place to cook and share his love of food and my mom could have someone to talk too and my siblings could paint Easter eggs and play with dogs and practice their piano. I am an oldest child of Asian immigrants, and the weight of what I was putting my family through did and continues to hang heavy on me. RMH eased those burdens.

Last night I walked home with a friend, who I'm going on a weekend adventure with soon. I mentioned how a member of our party didn’t know my medical history, with the intent of not sharing with her as I don’t feel safe with her yet. Few on this plane know my past. My dress does reveal the Mediport scar on my chest, and some of my coworkers have celebrated my BMT birthday with me before. But others know me only for my work in Europe now. I was proudly introduced to others from their offices, or excitedly greeted by nervous ones happy to see a familiar face. My friends in Luxembourg have never seen me bald, or throwing up, or unable to walk. One has seen me lying on the floor in pain, and a few others recently saw me shutting down when my sugar dropped. But they see an active, thriving, living Jen.

I have a life now. Yes, I'm tethered to an insulin pump and will be the rest of my life. Yes, my lungs have been screaming to cooperate in the cold of the recent weeks. The 10 inch mass that once lived there having left its indelible mark on my life. But I'm alive. Due to the work of the researchers who didn't give up despite the obstacles. Due to a medical team and parents who forged a treatment path. Due to my family and friends who surrounded and supported me. Due to the Lord's incredible kindness and sovereignty.

Lucky 13. This week, I get to see coworkers from around the world, and my past roles. I'll get to see Megs and Ruth and John. I'll get to out my feet in the ocean and I'll eat taco bell and corn dogs. And I will be drinking a Shamrock Shake in support of Ronald McDonald Houses everywhere. 

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

 

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!

Blessings

Hello All!! It's been a while since we updated, and a lot has happened since!!

So here's a quick update beginning from my admissions to the PICU.  I was coughing and couldn't breathe, which led to chest x-ray and eventually admitted to the PICU. While there were many theories as to why I was having trouble breathing, the final consensus led to chemo induced pneumonitis.  Certain chemo meds, which I was on for my BMT, can lead to pneumonia like symptoms.
I am on a treatment regime which consists of taking Bactrim (a pneumonia preventing antibiotic) every 6 hours for three weeks.  I'm also on steroids, and just finished a broad spectrum antibiotic.
Moving forward healthwise...I am seeing a pulmonologist this Tuesday.  I will also be following up with my oncology team on the 9th.  I still have greatly reduced lung function and support, and get tired rather quickly.

Thank you all so much for your prayers, notes, and acts of kindness.  It was nothing short of a miracle from God that I was able to leave the ICU when I did, and return home that quickly.

I ask for your continued prayers as I started college this past week.  It is a bit of a challenge to juggle the work with my health and doctor appointments across town, but I know that this is where God wants me. I have been incredibly blessed with understand professors who are being helpful to accomodate my needs. These verses from Isaiah 40 reflect what I've felt these past two weeks:

Hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary?  He giveth power to the faint; and to them that have no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Here is a song that was an incredible blessing to me in the ICU, as it accurately summed up what I often felt.

"Blessings" 

We pray for blessings, we pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

And all the while, You hear each spoken need

Yet love us way too much to give us lesser things

We pray for wisdom, Your voice to hear

We cry in anger when we cannot feel You near

We doubt your goodness, we doubt your love

As if every promise from Your word is not enough

And all the while, You hear each desperate plea

And long that we'd have faith to believe

When friends betray us

When darkness seems to win

We know that pain reminds this heart

That this is not,

This is not our home

It's not our home

What if my greatest disappointments or the aching of this life

Is the revealing of a greater thirst this world can't satisfy

What if trials of this life

The rain, the storms, the hardest nights

Are your mercies in disguise

'Cause what if your blessings come through rain drops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're near

What if trials of this life are Your mercies in disguise

Here are some pictures from the past few weeks!

ICU rooms aren't designed for mobile patients...hence the closeted toilet which swivels out! 

Attached to an IV pole...again

When did they take that?!

What can I say?

So the band around my chest was connected to a machine which vigorously shook me for 20 minutes every four hours.  The idea behind it was to loosen any particles in my lungs.  Everyone thought it was hilarious.

The mask shown in the previous picture is what I was constantly on.  It's called a CPAP.  It forces air into your lungs, which can be really uncomfortable and pushes down on your face.  The padding shown in this picture was to relive some of the pressure of the mask.  

Finally well enough to walk again! Going around the unit with Child Life Lisa! 

This is in the oncology ward, the day I was released.  It is customary to sign your handprint when you are done with your treatments and leave oncology.  However, when I ended my treatments, I was released from Seidman Cancer Center, due to the water trouble issues.  As a result, I never got to sign my handprint then, but I did now.  Hopefully I will never again have to be admitted to that ward.  Mine is the purple hand on the right! 

Test Results

So I had my 100 days/3 months from transplant PET and CT scan on July 5th.  I know many of you have asked about the results, and assured me of your prayers and support.  Thank you so much.  At my only other post-treatment scans, the day after Thanksgiving 2012, my cancer recurrence was found. So you can understand the trepidation with which I had these scans.   The days leading up to these scans were wrought with nervous energy in my family, as we awaited the outcome of these scans.

This afternoon I had an appointment with my oncologist regarding the result of those scans and...they showed no cancer! The CT scan did show a new spot in my lungs, but because it didn't light up in the PET (which would have meant a fast-growing cell group) the doctors are reasonably certain that it is not malignant.  I will have a follow up CT in 2 months to compare with today's results.  Also, this means that we are starting to look at taking out my Mediport! My Mediport will come out after the follow-up CT, so possibly sometime in early September.
Thank you all so much for your prayers and kind words of encouragement.  I know God is the only one to give healing, and I appreciate all your petitions on my behalf.
whom shall i fear
I'd like to include this song that I heard on the way to the hospital today.  It was a comforting reminder to me that whatever the test results, "The God of angel armies is always by my side."

Whom Shall I Fear

You hear me when I call
You are my morning song
Though darkness fills the night
It cannot hide the light
You crush the enemy
Underneath my feet
You are my sword and shield
Though troubles linger still
My strength is in Your name
For You alone can save
You will deliver me
Yours is the victory

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side
The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

Matching yet converse bald heads with Anne! 

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!!