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!

 

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 

​​

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

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! 
💜

#jenistrong here, there, everywhere!

On the road!

Gathered in OKC from ~25 Oklahoma communities. 

Edmond, OK!

Haiti!

A trip down the Pacific Coast Highway! 

Hawaii!

Temecula, CA!

South Texas! 

Colorado!

I love getting these photos- they turn any tough day into a bright one! 

I’ve shared before that Old Testament bible stories have never been on my list of favorite things since my relationship with Jesus exploded in 2012. I still looked at the pages and words of the bible and thought there wasn’t anything in there for me.I love to read but man those wordssssss and pagessssss and old people and regions I can’t pronounce. 

And honestly I still look at the bible and think those thoughts until I show up at church and our pastor introduces a story and message that’s so relevant it’s like the sun stands still until it sinks in and is filed somewhere special to draw on later. 
 
What a gift it’s been to hear light and truth, from both the old testament and new over the past few years. 
Since being diagnosed with advanced cancer I’ve drawn on messages as symptoms/side effects and emotions have  changed and things feel harder. 

This week I struggle with patience as my first follow up scans are this Friday and I get to review results with my family and my doctor team early next week to see progression from treatments over the last two months. Because my outward appearance certainly hasn’t gotten any prettier, my body aches and isn’t my own, and my energy levels are that of a 96 year old granny, I’ve had no real visual reward that what I am going through it worth it. “I said YES God, I’ve accepted this. I’ve adjusted as best I can. When does it get better? Im ready for the easy celebration now. Amen, yours truly. Jeni”

My pastor showed us how the book of Hagaii teaches us to refuse a defeatist attitude when we are called to “do the work.” We’re all called to do something. “Go up the mountain” he says. Once we say YES to that, it’s hard work!! No one promises he climb is anything less than difficult… That’s where I am. Im tired. Climbing, slipping, climbing again. Feeling strong one day, in sync with Him and my community, and the next back to my flesh and in a weakness that causes doubt. 

The truth: He is with me and you in our climb. His word (that big scary bible) is there to remind us about His love for us and plans for us to reap a harvest we can’t even fathom. 

Be strong and do the work. Stone after stone. I know there are so many people on this earth who have struggles each day that don’t even compare to mine. I pray they feel God’s love and strength and find a way to give their all. 

You can watch the message that I’ve referred to here: http://www.life.church/watch/the-time-is-now#2

I’m sharing this video of me taking my first Tarceva pill (chemo treatment) even though my brother said it was the cheesiest thing when we did it. I want to be reminded of how far I’ve come and even though I don’t have tangible results of the final draft of my journey, I know I’m on path with His will and can be encouraged by all that is beautiful around me along the way, even the hard work. 

​

My Cancer:

Non-small cell lung cancer (NSCLC)

Adenocarcinoma, Stage IV

w/ EGFR Mutation https://www.mycancergenome.org/content/disease/lung-cancer/egfr/4/

My Doctor Team at OU Medicine/Stephenson Cancer Center, OKC:

Aljumaily, Raid MD (Lung Specialist- Lead Doctor)

Hatoum, Hassan MD (Liver Specialist)

Herman, Terence S MD (Radiation, Chairman)

Gunter, Tyler C MD (Radiation)

 

I have completed 16 total days of radiation targeting 50 identified “critical spots.”

I started my systemic treatment “chemo” pill on June 14, 2016.

Follow up Scans scheduled for July 15, 2016 to compare to baselines. Original follow up scans were scheduled for 8 weeks post-radiation/beginning of Tarceva but because of new symptoms/side effects the doctors agreed we can do them at 4 week mile marker. 

Updates:

Cancerous Areas	6/14/16 Scans & Report	5/18/16 Scans & Report
Lung Origination of cancer	-Lower lobe mass lesion measured 4.4 x 3.1 cm -There is mild dependent atelectasis in both lower lobes -There is a trace right pleural effusion (collapse of lung tissue) -New onset prominent hepatic steatosis (rare but can be caused after pregnancy)	-Lower lobe mass lesion measured 3.7 x 2.6 cm
Liver Cancer has spread to this organ and is the place they have used for biopsies because of its accessibility	-Right liver mass measured 5.8 x 5.1cm -A 3.1 cm lesion is again demonstrated in the dome of the liver -Sensitivity is decreased by lack of intravenous contrast and degree of hepatic steatosis.	-Right liver mass measured 4.4 x 4.3cm -A 2 cm lesion is again demonstrated in the dome of the liver
Brain	No scans in June	-18 brain mets -Some mets hemorrhaging (bleeding) -Severe swelling
Hip Bones/Ribs/Spinal Cord	No scans in June	-Large mass on right hip, throughout ribs and up spinal cord.
Lymph/Bone Marrow System	No scans in June	-Cancer present throughout lymph and bone marrow system

 

Other Health Concerns	Details
Thrombocytopenia Deficiency of platelets in the blood. This causes bleeding into the tissues, bruising, and slow blood clotting.	Blood work was done 6/29/16 and showed more progress but hasn’t been uploaded into my portal yet. Cause of counts to drop so suddenly is said to be response to the 16 rounds of radiation I went through and we should continue to see these rise.
Deep vein thrombosis (DVT) in bilateral lower limbs	Serious condition of blood clots in veins, which can break loose, travel through bloodstream and lodge in your lungs, blocking blood flow (pulmonary embolism). Normally someone with DVT could take blood thinners but because of my blood conditions and bleeding brain mets, an IVC filter was placed inside of me on 6/10/16 so if any blood clots dislodge from my legs and travel, they will be caught before reaching the heart and lungs.

Current Symptoms & Side Effects	Cause	Resolution
Insomnia	Combo of my treatment induced menopause and emotions	Medicine as needed
Shakes/facial twitches	Cause unknown
Sore throat  (adam’s apple area)/chest/lung Dry coughing	Cause unknown: either side effect from upper rib radiation or spread of cancer in lung	Upcoming scans on 7/15/16 will be able to confirm if cancer on lung has grown, which would explain increasing symptom. If it has shrunk, then the pain and cough is just from radiation side effect and will get better
Hair loss	From full brain radiation	Regrowing already!
Swollen legs and ankles	Blood clots in lower legs	IVC filter put in on 6/10/16 below heart and lungs to prevent pulmonary embolism. IVC filter can come out one day, but not until blood counts are strong over a long period of time and my brain mets are confirmed to not be bleeding.
Headaches	Brain tumors swelling	Steroids help control the swelling which controls the pain, but steroids cause swelling of face and neck
Swollen face, upper back, belly	Radiated spots and steroid meds	Should go down over time
Right leg skin numbness/ internal bone pain	“Deferred pain” from cancer on spinal cord / nerve fluctuations	Will either hve permanent nerve damage or the numbness/pain could go away as cancer shrinks off of nerves being pressed on
Nausea/tiredness	Side effect Tarceva & radiation	Take Zofran as needed/eat something
Rash	Side effect Tarceva -said to be a good sign that targeted therapy is working

 

Current Medications	Dosage	Purpose
Tarceva	(150MG) 1 x Day	Targeted therapy/systemic treatment/“chemo”
Dexamethasone	(4MG) 2x Day	Steroid/anti inflammatory for brain mets
Keppra	(500MG) 2x Day	Anti seizure
Memantine	(10MG) 1 x Day	Protection of cognitive function from whole brain radiation (potential for short term memory loss)
Zolpidem	As needed	Insomnia
Percocet (allergic to morphine)	As needed	Pain
Zofran	As needed	Nausea
Holistic Medicines: Boswellia, Curcumin, CBD Oil	Daily	Daily

It can all be a little overwhelming, especially now while I am not in doctor care everyday and just waiting on the next scans. We will be praying for time to go by slow (to enjoy each day) but fast (to get more answers and see tangible results of healing).

Until then, #jenistrong!

The #JeniStrong community has been so incredibly good to me and my family we can’t find enough time in a day to keep up with all that is going on. 

“Strength” has come somewhat easy since being diagnosed with cancer because I am a daughter of a strong God, wife, mom, daughter, sister, friend, etc. and it’s been very easy to draw on others’ strengths to be strong myself. Although I have maintained emotional and spiritual strength, when I came across this quote below and read the definition of Resilience (the capacity to recover quickly from difficulties; toughness) I realized there are differences and I have really been struggling with “Resilience.”

“You are not born with a fixed amount of resilience. Like a muscle, you can build it up, draw on it when you need it. In that process you will figure out who you really are—and you just might become the very best version of yourself.” -Sheryl Sandberg, Founder of Lean In Together/COO Facebook

Thinking on “strength v. resilience,” I wanted to remember how I am feeling right now about my physical body: TERRIBLE.

Physical changes have been extremely hard for me- specifically my hair loss and weight fluctuation (rapid loss and then rapid gain). I went through pregnancy weight gain June 2015-January 2016, and then post baby weigh loss February 2016-May 2016. That is hard on any female, but it was beautiful and I loved every minute of pregnancy and felt so strong until my hip started hurting when Bentley was 7 weeks old. But I was still able to get up in the morning, decide if I wanted to throw my hair up or curl it and leave it down, and spend time the way I thought I needed to.

In the last two months, I lost ten pounds in one week, was forced to stop breastfeeding/pumping within a two day time span, gained weight back, lost all my hair, and have remained incredibly swollen from all my treatments and steroid medicines that control my headaches. It’s alot. And anyone who tells me “you’re being so strong” and “you’re so beautiful” bothers me (so sorry) because I feel like screaming at the top of my lungs while looking in the mirror. I may be strong against the fight against cancer and other things going on, but I am in desperate need of building my resilience muscle to this issue of my physical appearance.

Here we go friends:

(You all know what I looked like before, with hair)

…

Some radiation techs said I might not lose my hair at all, but others warned me full brain radiation would definitely make it fall out so I was not 100% sure what to expect. My hair started thinning but it wan’t sall that bad since I had a lot of hair to begin with so I thought maybe I would et lucky and just lose a little. 

Then my hair just rated falling out by the clumps (about 3 days after my tenth day of radiation.

)

I couldn’t hold Bentley because she was getting wrapped in hair. It was just falling out everywhere you looked whether it was being touched or not. It was awful. 

The process didn’t hurt at all, it literally would just fall out with no feeling. I was grateful for that but it still was not fun experiencing the rapid change.

It thinned and thinned over the two days until I had to get the rat tails cut and accept the hair loss was real. My sister helped me order a wig and we bought lots of hats for the summer. I have been empowered to be comfortable in certain situations with my bald head but it still is painful to look in the mirror and see a completely different physical person.

The hair never 100% fell out, so I am glad I did not shave it compared to just trimming the back up when it needed it (stubbles avoided!). My systemic /targeted/”chemo” treatment doesn’t have the side effect of hair loss so the good news is it’s already growing back and I rock some pretty funny hair styles around the house.

In addition to hair loss in areas they’ve radiated, I’ve been blessed with hormone-related hair growth  as my reproductive system/area was radiated sending me into a very early menopause. Overnight, I sprouted whiskers on my chin (look closely- can’t make this up!). Luckily, the European Wax Center just opened down the street. 😉

June 28th I wrote the following two posts, which still remain true but go to show how strength is easy to talk about but my true resiliency is missing because the whole time I was at this event without my hat on to prove to myself I could do it, I still felt awkward and wished I brought a hat. I hope that in sharing the hard parts of this journey show my authenticity in my desire to keep all this “not about me” and “all about Jesus”… I know that there is a greater plan, even if I don’t like the steps along the way. I remain hopeful that through my muscle flexing in His word, I will continue to grow myself in the way I am meant to right now.

First Post:

I’ve been adjusting/re-adjusting to life so much these past few weeks that I have found myself avoiding “cancer updates” because of some serious emotional “shame” over my body changes, my dependency on others, my physical limitations, my side effects and symptoms that have me feeling down, and so on. I am still feeling ‪#‎jenistrong‬, especially spiritually…but physically and emotionally, this is a tough season and I want to be transparent with that moving forward because after all, we are rallying together and trusting in Our Healer to provide His strength and I am better equipped to do that the more I include you and lean in than try to do it on my own. Tonight I was able to attend Christine Caine and Kari Jobe’s Unashamed Tour at   Crossings Community Church in OKC and this song rocked my world, giving me some much needed freedom/release from the shame I have been feeling. “My walls are broken and Heaven is coming down” in the best way possible. I lift Jesus so very high and hope you enjoy this live song!! (posted recording from worship night).

Second Post:

Not alone! 
@karijobe & @christinecaine reminded us all at OKC’s ‪#‎liveunashamed‬ night that God’s word is the final word and He is with us in our tough seasons just the same as before- and a disruption in “easy life” creates opportunity to look up and fix our eyes on Him, because He is there waiting for us to depend 100% on him. Not ourselves or doctors or the enemies of this world. Only Him.
‪#‎jenistrong‬
“Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.”
Isaiah 41:10

I will keep working on building my Sandberg inspired resilience so I can look in the mirror and feel better about these blonde locks growing back, and getting back to feeling like my normal self. 

 

The color lavender has become our Jeni Strong color of strength this last month. Not sure “why” other than the fact that February is a special month to me, with Bentley’s birthday along with mine, my mom’s, and my niece and nephew’s! Our birth stone is Amethyst, which is found in a variety of beautiful purples. And our friends who designed our logos chose purple by divine guidance. 

Not-so ironically, I came to find out the Cancer Color for “all cancers” is lavender. Today, let’s pray with all those effected by any kind of cancer. Children, adults, families, and friends all around our world going through your journey; I pray you feel this color of strength wrap around you and smell the beauty of fresh flowers to calm any fears. I pray you experience a moment consumed in the presence of our Healer and Heavenly Father who knows you and your calling. 

💜

Also as a happy Saturday post before a long health update later, my Lead Doctor sat us down to list the side effects of my new “chemo pill” and he mentioned “elongated eyelashes” in the same sentence as the not so fun things (like not responding to the treatment leading to death, among others). My mom and I thought he was kidding and making a joke trying to make me feel better… but he wasn’t. He said it was a “real side effect”.. Okay Tarceva, I love you! (Tarceva research shows 70% positive responsiveness for my kind of cancer/mutation combo!) 

While enjoying some fuller lashes this weekend, I am also wearing my Be Brave necklace from @rylieshore! I am encouraged to be brave each day and surround myself with shades of purple and all things beautiful, like all of you. 

XO

I haven’t updated many since my terrible turn of events late last week so I apologize for that. I needed the weekend to grieve a little bit. I went into last Wednesday feeling so strong in the plan: biopsy, clinical trial, calendar is nice and organized, radiation almost done, feeling nice and organized, oh yeah. 

So last Wednesday (6/8/16) night all of those emotions were squashed sending me into a confused state of questioning and discouragement. A cancelled routine biopsy, off the clinical trial, low platelet counts, blood clots like I’m 90, pain everywhere, 

My platelet counts (radiation on hold under 50k because it’s not safe/Normal is 150k-500k):

Wednesday (6/8): 48k 

Thursday (6/9): 48k still, running fevers. Not sure if I contracted pneumonia (had deep cough). 

Friday (6/10): 46k. No fevers (prayers answered). IVC filter procedure went well compared to first liver biopsy experience at Mercy where I felt everything and then was left in a room alone in pain with nor nurse in sight for 40 minutes.

OU Doctor was great (kinda McDreamy which Adam agreed so I can say!) until he told me he was going into my vein through my JUGULAR and not my hip like the nurse told me (less risk for infection). Prayer and the loopy you’re out fast and won’t remember meds helped. Neck pain wasn’t too bad and I was able to unwrap it on Sunday. Was discharged from hospital Friday evening so was able to rest at home but struggled with headaches. 

Monday (6/13): 43k and white blood cell count dropped for the first time. Bad day. Headaches were terrible all weekend from brain masses because I was told to stop the steroid (anti inflammatory) medicine but was given permission to get back on and taper off again later when full effects from brain radiation set in.

Tuesday (6/14)! 56k and headaches gone. 

Woooooo. They let me do radiation (3 more sessions left) and seeing my tech team lifted my spirits. They rallied together more donations for our medical bill fund- who does that?! So much kindness. 

The biggest news other than my platelets is that my Tarceva targeted therapy “chemo pill” came in! It gets shipped once a month to me and since I was dropped from the clinical trial who was going to cover the cost of these $100/piece pills I was nervous to ask how much was covered under our insurance since it’s not like there are off brands of this cancer fighting therapy! All 30 pills cost us less than $20 a month, praise Jesus and great insurance! I take this beautiful life saver (lol) once a day on an empty tummy and let it do its thing! It even breaks through the blood brain barrier that regular chemo can’t penetrate!

(On the trial I wasn’t able to start this until 17th so praise Jesus I was meant to be off of that and start sooner, even just a few days!)

Lastly for this great day, I met a really sweet 3 year old, Haylie, at the Stephenson Cancer Center who was visiting just for one day of testing and new bone marrow/treatment set up from Tulsa where she goes to St. Francis Hospital for her care. She has Leukemia, diagnosed at a year and a half old. Her parents are actually from a town where my best friend’s husband and family are from so of course they knew eachother and small town Oklahoma stories always make me smile. 

Haylie has been through a lot but was so brave and we were able to spend time together talking about our matching pink nails and similar hair cuts. I hope to see you again sweet girl and I’ll be praying over you daily. 

Going back in at 8am for blood work check and radiation of above 50k! 

XO