January 19, 2017: Here We Go Again!

Friends, it is time I share what has been going on this past week and if you can, please pause for a second and picture me on my knees begging you and everyone you know to pray through this with me and my family because these posts and my time spent sharing intimate details of my journey with cancer are not for social media entertainment or a gossip column about “have you heard about Jeni?!”… I share these details because I have faith in Jesus’ promise (Matthew 17:20 #mustardseedfaith) and the power of prayer. Not the kind of empty “aw, so sad…I’ll pray for you” prayer but EARNEST (James 5:16-18), AUDACIOUS (#joshua), INTENTIONAL prayer. I believe God is good and I believe Jesus died for me so I can live for Him, even if that means I suffer in these small worldly ways. My life was transformed by His Grace and this embarrassing and emotional can-barely-hold-my-baby//lose-my-hair-twice//firstname-basis-with-all-the-doctors//cancer-sucks story will somehow, someway be used for His glory. 
The MRI scan of my brain last week show an unfortunate growth of new cancer around my brain. 
There are a handful of friends and family members that I wasn’t able to call this week starting to cry already, please don’t be sad. 
The good news is that my medical team is very aggressive and put together a treatment plan that has already started. In addition to the continuation of my “chemo pill” Tarceva, I have to visit my friends in the radiation department for whole brain radiation twice a day for two weeks. 
There are so many intentional prayers needed here…I will trust that the spirit leads each of you reading this to know what something specific you can pray with us. (Speak over the cancer cells to leave my body, prayers for the radiation team treating me, prayers over everyone helping me get to the cancer center twice each day, pray for the next scans to be clear, ETC!)
The type of growth in my brain is the same I described at my last hospitalization when Leptomeningeal Disease was found at the base of my spine. This is just a different kind of cancer growth, unlike a typical “tumor mass,” it occurs when tumor cells infiltrate the layers of protective tissue surrounding the brain and spinal cord and begin to grow. So you can better envision, my past brain tumors (2 of which remain in the back of my right and left cerebellum/ 16 of which disappeared after my first round of radiation last summer) were masses in my brain, whereas this new progression of cancer is around the lining of my brain. Even though it’s a different type of cancerous growth, the radiation to my whole brain will cause my hair to fall out once again. 
The good news I have has me praising God for answered prayers! I’ve prayed and prayed and cried and cried over my pain. One of my doctors was able to finally able to put a reason to the rhyme; Cauda Equina Syndrome. My severe lower back pain is due to the leptomeningeal disease at the base of my spine (that we already knew about) damaging all the nerve roots that are down there, causing radiculopathy (a rare condition where nerves don’t work properly), making all of my complaints and tears over severe pain, weakness, and a numb right leg believable! My doctor is confident that three weeks of radiation to this area will reduce the agitation at that site and provide pain relief. Hallelujah! 
I want everyone to know that I am OKAY. I am under the best care where I am and have the best support team (all of you). Please don’t feel obligated to write me unless you feel called to share your prayers and well wishes… I am confident that He hears all of these prayers and that is enough. This week has been painful, but has drawn me and my husband closer, me and my family closer, and given me much much much deeper gratitude for this life I’ve been blessed with. 

Xo #jenistrong 

#herewegoagain 

#considerjesus

Here are a few photos Adam was able to take when the radiation team was fitting me for my radiation mask that holds me in place during treatments. It’s not fun but kind of fascinating. 

Lastly, Please join us in saying goodbye to my hair, again. You all know it’s my favorite part of this! (Isn’t my husband handsome?!)

January 15, 2017: Praising You

Don’t you just love when a song perfectly describes how you are feeling? Today I learned that “Praise” is talked about in one form or another more than 300 times in the Bible so before I enter this scary, stormy week of scan reading and treatment planning, I choose to say No to the fear and Yes to the discipline to fuel my heart with songs that draw me nearer to my Healer.

“For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” -2 Timothy‬ ‭1:7‬ ‭NLT‬‬

Sing with me, friends. Surely I’m not the only one in a storm. 

   

“Praise You In This Storm”

-Casting Crowns

I was sure by now

God You would have reached down

And wiped our tears away

Stepped in and saved the day

But once again, I say “Amen”, and it’s still raining
As the thunder rolls

I barely hear Your whisper through the rain

“I’m with you”

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away
And I’ll praise You in this storm

And I will lift my hands

For You are who You are

No matter where I am

And every tear I’ve cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm
I remember when

I stumbled in the wind

You heard my cry to you

And you raised me up again

My strength is almost gone

How can I carry on

If I can’t find You
But as the thunder rolls

I barely hear You whisper through the rain

“I’m with you”

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away
I lift my eyes unto the hills

Where does my help come from?

My help comes from the Lord

The Maker of Heaven and Earth

January 5, 2017: Update

I spent half of the day at the cancer center for my monthly dose of Xgeva, which is an injection that is used to stop my bones from further breaking down. Because I have so much pain, it feels like I have bone cancer. But unfortunately, cancer to the bone (different than bone cancer itself) is somewhat common with my kind of advanced lung cancer. Before modern science who could have dreamed up that tiny cells in a healthy young body could mutate on their own and spread from a place of origin through the bloodstream to attack other places? Anyway, my brain and spine scans are next Friday. I am scared that worsening pain down my back and into my seat bones and hips means the bone metastasis have grown more but as always I’m grasping at the straws of faith and in that faith lies the hope for healing and good news. I think the Center’s therapy fish are rooting for me 😉

 

My direct team at the cancer center have truly become like family to me. We’ve cried together along this journey through many talks as you can imagine and of course as the professionals that they are do their best to answer every single question we have along the way. Today was a special day as I can report that our team has officially laughed together. My lead oncologist concluded our meeting (I didn’t have an appointment scheduled with him but since I was there he wanted to talk to me himself) with comments on my elongated eyelashes. He tried not to, but he laughed and repeated it is sometimes a “side effect” of my [chemo] treatment taking us back to early summer when he originally “warned” me and concluded with permission to cut mine when they get in the way. Haha! Note, the top lashes. 


When it arrives at my doorstep like the prized specialty pharmacy package it is, my friend ‘100mg of Tarceva’ and I will be reunited  because there’s too much toxicity between me and my former friend ‘150mg of Tarceva.’ My body has proved that the 50mg difference is worthy of this change and we now ride it out for as long as possible.  But anyone reading this knows, I don’t ride on alone because I have my family, and all my prayer warriors. #jenistrong

Last photo of the day: my mom who we refer to now as Nana waiting with me in our zen conference room where we casually talk about how much cancer sucks, but also how there are angels with us.   

December 16, 2016: A Bittersweet Day

Yesterday I was due for CT Scans on my chest, abdomen, and pelvic area. My oncologist got a really fast read on the scans and was able to call me before the day’s end with good news; no new cancer growth. This means that my current treatment plan is doing what it is supposed to; managing the spread of cancerous cells in my body. This is really great news going into the holidays. My whole family will be together for multiple days! I will have my next round of brain and spinal cord MRIs next month.

The afternoon seemed to be so worthy of praises and celebrations but the pain that I normally have in my hips, back, and down my legs was slowly worsening even through the pain medicine that I had taken; both long lasting that I take morning and night as well as the “breakthrough” dosages I am allowed in between if needed. The pain I was experiencing turned into the worst kind of pain I have felt by late afternoon. What I was feeling could be compared to surges of electricity spiking my inner right leg above the knee- pain so bad that my body winced in an uncontrollable jerk with each surge accompanied by ugly wailing and whimper. After laying for hours with no relief I found myself feeling truly striped of everything I am made of as I laid in my bed helpless, crying out to my husband, parents, and God.

I will just tell you very simply what happened after I told Adam I couldn’t take it any longer:

He held me and laid his hands on me and asked our Healer to give me relief and rest. In the name of Jesus he pleaded and pleaded…he left no room for the pain to hold me hostage. Honestly I do not know what he was saying as my mind was so fogged with the pain I could not shake on my own. He turned on worship music to play lightly in the room and he just comforted me hand in hand.

In time, I was able to fall asleep with relief.

I read once that instead of telling God about our mountains, we should be telling our mountains about God. I think the takeaway of my experience last night is that ^. God knew what I was going through and He was there. He didn’t need me laying there questioning why he was allowing this (not just the current situation but this whole year of chaotic medical confusion) to happen to me. And just as a marriage ought to, Adam stepped in where I could not and had audacious faith and said what needed to be said. Both of my parents stepped in where I could not, and thought of other remedies to calm my body down and make me comfortable.  He was there. He was loving on me through those who were home with me. This is my journey and I am not going through it alone.

Watch out mountains, my God is bigger than I can describe and when you think your slopes are too steep for me and my own strength, I have others with me!

 

November 7, 2016: Beni Strong 

This week Bentley has found her balance and desire to crawl. Like my mom always told me; “where there’s a will, there’s a way!”… and just like Bentley, I am determined to continue the will to defeat cancer to make the way. Bald (for now) and bold. Because every child deserves a mother who follows her faith and never gives up. 

I didn’t have any symptoms or warnings of having cancer until ~6 weeks after Bentley was born on 2/2/16. I was officially diagnosed when she was 14 weeks old on 5/12/16). I think that’s why a lot of people make it seem like our story is more sad than others… No one likes a sad story that involves a young child[ren]. I understand that. 

Other than the obvious fears that I may not have as much earthly time with this sweet girl as I may have hoped for, there have been other not so obvious moments this year that have been painfully hard for me related to being a young mother diagnosed with an ugly disease.  

A few examples: 

-Having to stop breastfeeding immediately the first day I’m hospitalized after initial radiation from tests 

-Being told I won’t be able to conceive and carry another child again 

-Feeling as though I’m embarrassing (physically) to her or just an overall worthless mother because I am not even able to hold my baby while I walk down the hallway or set her gently into her warm bed at night because I am too weak

I know that the enemy wants to use something and someone I love so deep to get to me and convince me of lies. Not in this house! This house continues to be filled with love and laughs. With memories and family time. How beautiful is God to create such joy in my heart through this child… 

Mommy loves you Bentley. I’m so proud of you and how strong you’ve been since day one. Look at you go! 

Xo 

August 17, 2016: Control

The middle of the night tries to rob my peace! Can’t sleep again, worrying again, uncomfortable again. I am thankful for technology and the fact that I can listen to a Christ-centered message at 2am that can re frame my perspective and in the midst of long quiet nights of learning, prayer and reflection time, I can feel wrapped in peace. 
I know that my anxious nights creep in when I allow my tendencies to want full “life” control, when I believe my ways are better than God’ ways, and when I fix my eyes/mind on fear over faith. As Pastor Craig Groeshel outlined in the video message below, we all want (and take) control in some capacity whether it be something small or something as big as life’s timeline. 

My graduate school professor, advisor, and mentor, Dr. C.D. Rudebock, has been teaching and reminding me to pause and be still since the day I met her. Even though I have prayerfully worked on this as I’ve grown into myself as a daughter, wife, student, professional, sibling, and mother I realized how often I’ve pushed others away as I’ve acted blindly in the buzz of wanting to control something. At the very least, I am so thankful that since May’s diagnosis it is somewhat easier for me to pause when it matters most so I can make quicker adjustments. I [try to] draw on that daily and it seems to allow the desire for control to drift away. 

In terms of my cancer and fear of not being in control of those nasty little cells being annoyingly creepy in my body; I know I am being given opportunity to really pause, find the stillness even when the fears creep in, and stand in faith that what Paul said about Christ is just as true today as ever… 

I don’t want to give up control, but I am open to the idea that there is one safe place to put it and that is with our God. 

“But we are citizens of heaven, where the Lord Jesus Christ lives. And we are eagerly waiting for him to return as our Savior. He will take our weak mortal bodies and change them into glorious bodies like his own, using the same power with which he will bring everything under his control.” ‭‭Philippians‬ ‭3:20-21‬ ‭NLT‬‬

http://www.life.church/watch/i-choose#2

August 8, 2016: Processing Storms 

I have sugar coated stage 4 cancer for almost three months now. I’m tired and some crazy, powerful questioning has caught up. 

Most days, I am nauseous 75+% of the day regardless of what I eat, drink, or mix up (medicine combos). My tummy even wakes me up at night, it will be so bad. I also have extreme pain still in my right leg that comes and goes when nerves feel like firing. Because of where radiation was conducted in my lower pelvis, my digestive system is also struggling in a multitude of ways I never knew existed. It’s not fun, or easy. I sweat a lot, get chills a lot, shake a lot. I trip easily because my leg is numb and sometimes I randomly feel so tired I could sleep until Christmas. I scare myself in the mirror because I hardly recognize my reflection and I take out my frustrations on my husband who has been nothing but hard working to pick up where I can’t be with our family day to day functions. 

Sometimes I feel like I am in a giant nasty ugly storm. 

I definitely feel guilty every time someone says I am inspiring and strong because I feel like I hide behind positive words and photos more often than not. On the flip side, I’ve been brought up to believe in the power of attraction and I’ve grown into my faith in God and my relationship with Christ so much that I am confident in our declarations and prayers and believe that this storm will pass when and how it is meant to. All in all, finding balance is easier said then done. I want to do what I’m being called to do and I want to do it well. But it’s hard. 

I admit that I question why my family and I are in this storm.  I remember my radiation therapist telling me side effects usually last about two months post treatment and I question why? My red blood counts switched with the white and are now low along with ther weird little pieces of medical blood hoopla- why? Then there’s the fun fact that my doctor said the average patient stops responding positively to my pill Tarceva after about one year meaning cancer starts to come back aggressively after successes in management the first year. You bet I’ve questioned WHY. 

I am constantly humbled by other cancer patients’ stories that keep them from much more than I am kept from and like I’ve said before I cannot fathom experiencing this type of journey if my sweet children had any health trial, but sometimes I just want to sit and cry and ask (or beg) the storm to pass. If not for me, for my baby girl who needs her mommy until the year 2090. 

I want her to always remember the strong me. So- as my mom would tell me, swords up! The strength to fight will come from within, where Christ within me takes over 100% because on my own I have very little. Storms always pass anyway, right! 
💜