Easter Weekend 2017

Another holiday has come and gone and I am lying in the comfort of my home surrounded by the sound of [my] sleeping beauties. I know Bentley is in a heavenly sleep when I hear her purrs over the baby monitor. I can’t think of much more to fill a mama’s heart than listening to a baby sleep soundly. My husband and I have been extremely blessed with a child who sleeps through the night. I know I can become guilty of comparing our family to others and I think “gosh I wish we could go there or do that” feeling sorry for myself that my reality keeps me living a life revolving around a clock of medications and being cautious in all activities. But it never takes long after those thoughts to recognize what a beautiful life I have and how full my heart is with most of my loved ones so close. I close my eyes to try and save this feeling forever.  

I know most of you reading this know me personally but then there’s  some of you who only know me through someone else. If you’ve read any of my other blogs you’d know I often write about what “we’re” going through lumping others in this thing (stage 4 cancer journey) with me. I suppose it makes me feel like I am not alone and emphasizes my desire and need for community and companionship in general. But most of the time “we” references me and my husband, Adam. And he is who I wanted to write about this weekend as I count my blessings over this holiday. 

Without Adam, I wouldn’t know my savior, Jesus Christ. Without Adam, I wouldn’t have such a strong disposition when we sit through doctor’s appointments that render disappointing news. Without Adam, my parents wouldn’t be allowed to comfort me and love on me in the same ways they are able to. He’s stoic, strong, and poised and even when he doesn’t say much I know I can count on him for anything.  

This weekend in church we were reminded about God’s perfect plan in the Risen Christ and in that plan was Jesus who had every reason to give up and change the circumstances but the fact is that he chose to finish the race for ME. I am so so thankful for the grace I have. That thought alone has gotten me through a lot of pain this year. 

I shutter to think where I would be if Adam gave up on me when there were (and are) a million reasons to choose a different/easier route. Because he’s never given up, I found a relationship with Jesus and in this past year I’ve known who to look for for my reasons to fight, to look ahead, to maintain that I may be healed at any given moment. I have had a million of my own reasons to give up but Adam is there in the most humble and graceful of ways to stand in the cracks so my journey is less burdensome and reminds me where to fix my eyes to get through whatever I am in.  

Who are you a reason for?

A Million Reasons
“I bow down to pray

I try to make the worst seem better

Lord, show me the way

To cut through all his worn out leather

I’ve got a hundred million reasons to walk away

But baby, I just need one good one to stay”

I love you, Adam. 

March 12,2017: February Bliss and Cancer Heartaches

I apologize to those of you who wish I updated you more frequently. It has nothing to do with wanting to withhold information and has everything to do with me feeling like when I write about myself and my cancer I get anxious in the specifics of medicine and the things I don’t understand.  I am also guilty of feeling as though writing or typing out what the doctors tell me is me confirming those facts that I don’t want to be factual. A few weeks ago I received an email from a new friend who said “the fact is you have cancer, but we serve a Fact Changing God!” And let me tell you what that was a game changer for me and I remind myself of that every day, and that really does help me. 

But then there’s tougher days like last Wednesday when I lose sight of the big picture… But I don’t want to bore you with that yet- first I want to highlight the month of February!  

I got through two a days radiation just fine, and I got to spend a lot of time with friends and family who drove me and spent time with me at the center. We still have not done follow up MRI scans to confirm how successful radiation on my brain and lower back was; that will most likely be done in early April allowing time for it to fully run its course. 

The radiation did not help the pain in my lower back and each day that passed had me doubting I’d ever see a day where I could walk or bend and not wince in pain. But! Then I met a new doctor who was able to help with a simple caudal epidural and I’ve been pain free ever since! And a near perfect month has it been…

Bentley girl turned ONE on February 2nd, and we had a lovely time celebrating with friends and family. A little bit of makeup and no pain went a long way for this mommy that day and I will forever remember Beni’s first birthday as a perfect day shared with ones we love most!


Last May I didn’t know if I’d see the end of the year let alone throw my baby’s first birthday and be well enough to bounce around the room hugging our friends and enjoying a Royal Tea party. One happy mommy.

I have also been one happy wife!! Adam and I were able to celebrate Valentine’s with a country music concert and see a favorite, the Josh Abbott Band, who performed our first dance wedding song. A night out together in our boots  was just what we needed. 

 

I know. I’m spoiled. And how can this month get better? Well! I was able to travel to Kansas City where I was again spoiled beyond belief staying at the Raphael Hotel right on the Plaza and the weather was insanely beautiful allowing me the opportunity to WALK around for hours, all pain free, which I hadn’t really done in I don’t know how long. Our main reason for the trip was to see Phantom of the Opera which was just a dream come true for me because I had never seen it. And of course we were spoiled there as well and we’re given a backstage tour and spent some time with the lead actor who plays Raul, who is a friend of a friend and he was so kind. He and his team are like US Olympians in the world of the arts and we’re all so humble. It was really a trip of a lifetime for me AND I got to spend quality time with my mom and dad. 


See? February was treating me so well. 

And then like at the end of every February I turned 27! Another milestone I wasn’t sure about when I was first diagnosed. But here I am and my friends, like always, spoiled me with a detailed birthday dinner with all of my favorite things!


February was great for all the exciting reasons highlighted above but also in ways pictures can’t capture. A very important friendship in my life was mended and restored. Notes from strangers about their faith being renewed through my story  continue to pour in  and a local business owner decided I was the missing link in their organization and they were so bold enough to name a product after me and adopt a program to give back to other cancer patients. I have also been able to get back in the pool at my fitness center where I’ve been healing as I imagine a dolphin would 😉 kidding. But the water feels like home and I’ve made many friends in the group water exercise classes.  I hope you can all see the common thread here, that there is so much in my life that I have to be thankful for and there is no way that I could appreciate and be a part of these things if I had any other life lined out for me. Through my trials God has shown up. He’s answered prayers, He’s using people, He’s  protected promises and extended grace upon me in a way that makes a stranger in a hot tub say to me “your light is just infectious and I felt like I needed to tell you that.” Friends, it’s not my light, it is God’s finest work. 

In the midst of all of the above Feel Good days I had routine scans (last scans showing the leptomeningeal cancer spread to my brain and spine) showing even more cancer progression below my lung and in my liver. These small tumors flagged my team because this meant my systemic treatment wasn’t controlling this new growth so they decided to do a biopsy to test for a new mutation. That right there is enough to rock my faith a little. I don’t like admitting it but each time the bad news comes I ask “WHY? What did I miss the last time?” I had a biopsy done and within hours of going home I found myself back in the closest ER and then transferred to my hospital for a direct admission so my own doctors could access my files and be involved. I had some minor bleeding from the biopsied site which isn’t uncommon in that type of procedure so once found and medication was given to control my pain and anxiety about bleeding out (a major fear) I was A OK. 


The sadness and anxiety grew inside over the week and eventually led me to a quiet place where I could get on my phone, knowing where I could find and read scripture to pick me up. The words that first grabbed me in a social media post led me to a favorite song of mine and for the first time in my life I was urged to get on my knees, all in the midst of some real ugly, mourning tears and snot everywhere crying. A few seconds later I was interrupted by a phone call which happened to be my nurse Robin (who I believe to be one of my angels here with me) and the first thing she asks is why I am crying and after our exchange she told me the results of my liver biopsy came in early and the doctor wanted to see me in the morning. I was supposed to hear the news 3/22 which was another two weeks and I knew that the breakdown I was having was partially rooted in my fears of dwelling over the next couple of weeks so the call was a huge relief and answered prayer for me. When we hung up I felt like angels were all around me and I was metaphorically held/hugged/comforted like a baby  and spoken so clearly to “don’t worry child, I am with you and there is no need to worry.” I was covered, held, calmed. A day I will never forget. >>>The only other day I’ve ever felt that way was the day Adam told me about Boston when we first started dating. We were sitting in my living room and the words poured out of his mouth like a scared, shamed young man and I was overcome by a supernatural peace and comfort greater than I alone could have ever provided and from that moment forward we started down a journey that forever changed all of our lives. I wasn’t aware of Jesus Christ at that point in my life. But that was my first personal encounter with His presence and it wasn’t until I was invited to life.church.tv that any of it started to make sense. 

So here is where we are at after meeting with my team this week:

The Initial diagnosis of the protein EGFR exon 19 still presents in the bio marker tests we got back. This means that the new cancer cells have not mutated to the expected T790m protein as anticipated. The other test for PDL1 expression (RE the possibility of me being put on immunotherapy rather than chemo) did not come back from the specialty lab. The test is either not complete or they weren’t able to get enough tissue for complete sampling. The latter is probably true after the passing of this much time and the doctor’s initial concern that my cancer spots were hard to get to in biopsy without putting me at risk. Since my initial tumors are still showing to be responsive to the Tarceva and continue to abate them, my oncology team has decided the best course of action is to keep me on Tarceva. For the new cancer “clone”, they have decided to augment my treatment with chemotherapy. The combination of Carboplatin and Avastin have demonstrated super power fighting agents in studies for my kind of cancer so we are hopeful to arrest the progression and continue with my wellness plan of controlling nerve pain and gentle swim therapy. 

As you can imagine, I was disappointed that I could feel so good on the outside and be so betrayed if you will on the inside. We have been prepped that my kind of cancer can be progressive but with my mustard seed faith you all know how that I’m hoping for scans to be clear, not show what they’re showing!! I can see now why people give up. Honestly I can empathize with the deepest darkest misery someone who feels alone and abandoned must feel. But for me, no matter how dark the devil tempts my heart and head to get, I’m brought back in an instant when I think of God’s unique and unfailing love for me. Remember what my friend told me: we serve a fact changing God. So while all the earthly facts swirl around me I’ll be taking one step at a time listening to the spirit inside and hopefully live out the legacy I am supposed to, reminding myself of the day I was brought to my knees and found a spiritual encounter strong enough for me to share with others. 

This next week, I’m traveling with family back to some roots in Arizona where I will be rich in love, baseball, and sunshine before I return to start my first round of chemo. Just what the doctor ordered. 🌵☀️😎

I thank you for your loyal following and continuous prayers. 

Xo

#jenistrong

#considerjesus

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