Wednesday, April 15, 2015

An Update and Thoughts 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 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


1 comment:

  1. Jen, I am so broken by reading your blog post. I am convicted, that, though you have had much difficult news in your young life, yet, you remain steadfast and faithful and radiate God's goodness, mercy, and joy. Our God is faithful. There is much trouble and difficulty, and yet, God is faithful!. I am grateful and encouraged by you and your sweet smile!