July 15th, 2017: Keeping Up With Moving Parts

This week I’ve come to some realizations that make me kinda laugh. I think about half of my followers are glad they don’t have to log online every single hour of every single day to get my updates- I’ve tried to keep it as simple as possible so there’s a landing dock and hopefully the latest information is there for you to catch up on… and then there are the rest of you who are knocking on my doctor’s door’s at this point trying to find out “Helllloooo is she okay? What’s next? Have medicines changed? How’s she doing spiritually and emotionally? Why don’t we know anything yet? Is she ready to talk now? Did she try the supplements I sent her? Oh, you want me to come visit right now, ok??” I feel ya. I feel all of you, trust me and I love you all for the ways you check in on me and I hope I everyone can understand I try my hardest to express my thoughts, feelings, and perceptions in graceful ways (trust me there are times my thoughts are pretty ugly!) and I also want to communicate my health news in an accurate manner (because I know I can sure butcher it!) so I try to find balance in that and on top of it all I want so badly for my writings to be led by the spirit in this journey rather then from any scared, blind moment from the heart, which is usually when it’s easy to write because it’s like our minds are molded to have negative diarrhea of the mouth when things aren’t going our way. 
So to pick up where we left off.. my mom, husband, and I went to two large cancer centers for second options, very much blessed and encouraged by my team here in OKC. We liked the modern/forward-thinking approach we found in Boston’s Dana Farber Cancer Institute but then we felt much more at home when we got to Nashville’s Sarah Cannon Cancer Center and the doctor there who was a female heroine if I’ve ever met one! She was so eloquent when she spoke but careful never to speak over our heads. She had a very specific clinical trial picked out for me, which was the one we were hoping (through our own research) that someone would be able to get me on since it wasn’t offered in OKC or anywhere close by. For those following my cancer closely this trial is called BGB324 and we left Nashville with all the plans to return the next week to start on a heavy-travel-fight-for-my-life plan. This trial included an AXL inhibitor to treat my kind of cancer rather than using TKI inhibitors (which we’ve done since last May. All the science pointed us in this direction and even though our little family was getting pretty used to having my energy back and feeling pretty mighty at home I came home from TN to OKC feeling a new sensation in my arms and back of my neck which all got progressively worse day by day. This area had never hurt in relation to my disease before so I tried everything from IcyHot, massages, heavy ice, to heavy heat all on top of my pain medicines trying to find any kind of reason – I did too much, I held Bentley too long, I slept on bad pillows or carried too much at the airport. Excuse excuse excuse until I woke up and knew that something was wrong. . . One call to our Wonder Woman nurse Robin and she suggested we go into ER. So my mom escorted me, yet again, to the emergency room where they did a 3 hour MRI of my brain and spine to see if they could find what was causing all the pain.

Just in the last few months since my last MRI scans (& remember that is separate from the recent CT scans that had us looking for a new way to manage the new lung and liver mets that were found) new cancer has indeed developed and moved. And boy did it move! 

So, what we are looking at now is an answer to why the increase in pain was so dramatic. The last (2nd) time I had brain radiation it wasn’t because the 18 mets came back it was because of a new type of cancer growth I explained called Lepto Meningeal Disease which is an extension of my kind of cancer that is more creepy crawly then a tumor type met. This lepto disease made its appearance back then but was managed. Unfortunately it is back and has traveled and penetrated the lining of my Central Nervous System and is now presenting up and down my spine and in to new areas of my brain. 

I’ve been in the hospital a few days because they can control my pain better than if I was at home. After meeting with my radiation oncology team they explained what’s happening and what options I have. Because this is a very fast and aggressive cancer, time is of essence for decisions. My doctors were tender and compassionate and through tears of my reality I decided to start radiation on my entire spine immediately (holding off of the brain for now). While I’m in the hospital I will be transported across the road to the cancer center to receive two doses of spine radiation  per day. Once I’m home I will receive one dose per day, receiving a total of 15-20 treatments. This go around I’ll be on my tummy for treatment rather than facing up- sounds like it would be more comfortable but I promise it’s not at all! 


My oncology team is putting me back on Tarceva and we’ll need to come up with a different plan to treat the growth in my lungs and liver since the lepto disease precludes me from the clinical trial in Nashville. There is just not enough study and knowledge in successfully eradicating my kind of cancer….YET! 

I told one of my doctor’s yesterday that my faith is stronger than ever and I believe in the miracles that he doesn’t. (His reality: He gave me 12 months max to live. My reality: I serve a fact changing God!) After all, I’ve defied the odds thus far with all your warring prayers and steadfast support! I’m reminded there’s nothing too big for me because God is WITH me His Power is IN me. “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John‬ ‭16:33‬ ‭
To 100% update you I’ve been struggling with some blurry eyesight which makes typing on my phone somewhat aggravating. But anyways I saw an ophthalmologist and he confirmed I have Radiation Neuropathy that is not a super common but a not unheard of side effect from brain radiation, let alone twice. Next known steps to attack this problem is to meet and consult with a new Retina Specialist who is promised to be able to do a procedure on my eyes. This procedure cannot reverse the damage already done but it is known to be able to prevent it from getting any worse. I had an appointment set up for this last week but like everything else we go with the flow and since we got the second opinion doctor appointments set up so quickly we had to postpone the Retina doctor. And now that we are back and have landed myself into more radiation we will move that back even more until we are for sure done with that. 

So many people, in fact all of you, are fighting some kind of battle and if it’s not now~ enjoy every minute! ~ because the promise is real and this life is not meant to be meaningless and your trailing time may look very similar to mine or very different than mine but regardless of how it looks it is meant to be met with Truth and Light to bring meaning to each and every circumstance! 

I’ll be somewhat lethargic the next few weeks and you all know where and what to pray for at this point! If you feel so inclined to send physical mail this is our first official notice that we have closed on our house yesterday in the hospital and a bunch of friends and family have helped Adam move us! Please contact my parents, me or Adam direct for our new address. God is good, all the time. 


#jenistrong

#considerjesus

July 4th, 2017: Boston

Well, Boston is a lovely, clean, and patriotic city and I am very thankful for the opportunity to come out here! I had my 2nd opinion with Dr. Oxnard out of Dana Farber Cancer Institute yesterday. He reviewed my scans and medical records and talked a lot about his specialty in studying cancer beyond the cancer…in others words – the biology of HOW and WHY cancer mutates, specifically in young patients like me. He validated that my standard of care thus far has been stellar at OU and that made me feel so good. He also noted how I “look good” for being stage 4… I can only imagine the state of most patients who seek help in their last efforts to hang onto life. 😦

Anyway, Dr. Oxnard spent an hour and a half with us after his long day, taking a lot of detailed time to discuss how there are not very many different treatment options that could be done RIGHT NOW for me (God feel free to sprinkle some extra patience on me now!!) until he spent more time looking at my tumors that have grown, which led to his professional advice for another biopsy. In the meantime of scheduling that biopsy, having it done, waiting for lab results, etc…,he mentioned that we could add back a TKI (like going back on Tarceva or trying Tagrisso) and combine it with an immunotherapy for 4-6 weeks. If you remember, February was when I had my last tissue biopsy, but that was an aspiration biopsy and they did not get a good sampling to see clearly what exactly the tumor was doing as far as mutating. Dr. Oxnard felt that since the tumors have grown in size in my lung and liver, he could get a good core sample now through a biopsy procedure. So we left that conversation at he and my OKC oncologist would talk after today’s holiday and decide (if I agree to this biopsy) which hospital/city would be better for that to take place in. So we will know more about that later in the week. 

Honestly, I was under the impression that we were going to be reviewing a fitting clinical trial right off the bat and I’d have that situated by weeks’ end but without him knowing more pieces of my puzzle, he only had one on hand that involved a listeria vaccine, which was one of the far reaching, not ideal but possible options. His awareness of my lepto-meningeal disease in my central nervous system led to the discussion of needing more study time to research other “appropriate” trials as my case is tricky.

It was clear to us that the resources and specialists here in Boston are quite advanced but because I don’t 100% feel like a path is set in stone we are continuing our quest to see another oncologist, Dr. Johnson out of Sarah Cannon in Nashville, TN. We have a meeting with her tomorrow morning so will be saying goodbye to Boston quite early in the morning. We are serious about leaving no stone unturned. I realize more and more each day that this is a process, not an event. This is a journey, not a destination. And this journey needs to be carefully mapped out and adjusted over time.  

For now, I am incredibly grateful for my husband’s willingness to be by my side, faithful and strong; for my mom who could make this trip with us and for my dad to care for Bentley (who I miss sooooo much) while we are out of town. Family is the biggest blessing. 

More to come warriors! Prayers for safe travels over to Nashville and continued discernment for next steps. Xo

July 2nd, 2017: Jet Setter

Somehow in all this week’s angst of finding out about my tumor progression and learning our cancer center here in OKC is pretty limited on relative clinical trials to treat me – the right doctors, scientists, and advocates for my kind of cancer have presented themselves in divine ways, and I again can barely find words to express how incredible and unreal it is that so many people care for me and put me first on their lists to make things happen. **Special shout out to my mommy, Nurse Nana, Jeannie Jay Wilson Kern who has kicked some serious cancer research ass to find the perfect clinical trial for ME to get into so I can begin treatment ASAP as well as contribute to lung cancer research.** We’ve been blessed MAJOR this week because we were told it would take months to make this happen but no way Jose we have the Lord on our side and in the morning my mom, husband, and I are catching a plane to the Dana-Farber Cancer Institute in Boston, MA to see Dr. Geoffrey Oxnard!!! (who is the author of the best suited clinical trial for my kind of cancer with all it’s special characteristics: EGFR positive, Exon 19 deletion, NF1 positive, T790m negative, low PDL1 expression). I am praying that Dr. O moving his calendar around to meet me Monday on such short notice is a clear indication that we are on the right path to a cure!! Ya ya there’s no known cure but with more research and studies like these, there is nothing written anywhere that I know of that says a California-gone-Oklahoma girl can’t become the first one to be cured of NSCLC!! 

Anyways, I will be meeting Dr. Oxnard’s genomic analysis team, doing lab work at 2pm and then meeting with the doctor himself at 5pm Monday. I should have more of an update on what’s next for me then, and hopefully have more to celebrate during Fourth of July celebrations in one of our nation’s most Patriotic cities! 

In an uplifting message sent to me earlier this evening, a dear friend hit the nail right on the head about all of this; I will live EVERY day He has ordained for me and that is regardless of any cancer diagnosis. Isn’t that just so true for us all? Go out and live your life! Your days here are not guaranteed and trust me, what you have planned is mostttttt likely not going to be the way it turns out. Anyways, I thought I’d make my kind friend’s prayer known here so everyone can join in on this intentional cal!

***Prayers for safe travels and that I, Jeni, may have rest, peace, and comfort through this unknown (finding a new treatment) time. And that we come out of this with answers we need!*** AMEN!

#jenistrong

#bostonbound

#wehaveasonnamedbostonHA!andimgoingtowanttobuyhimeverythingiseewithhisnameonitHA!

^literally. Haha! Jokes on me this time 👏🏼🐬

June 27th, 2017: Hello, Opdivo

“Long time no blogging Jeni…” Yes I know, sometimes I just feel repetitive and redundant; I hate cancer, this is why, I love all of you reading this, this inspired me and I wanted to share, oh and I love Jesus! <– Have you all heard those things from me a time or two? Well recently I have just been absolutely exhausted. It is actually a good sign when I don’t write too often because that means I am falling asleep better and staying asleep through the night, something I struggled with for months and months and those sleepless nights are when I would do most writings because I was in my head so much, worried about all the details of my life that I am not in control of. 


Anyways, I have been doing well, able to do most things and enjoy my friends and family in between my chemo treatments. Never would I have guessed that my check up CT scans of chest,abdomen, & pelvic region last Monday 6/19/17 would come back with bad news. But sure enough, the chemotherapy combination (liquid infusions I sat through once every 3 weeks) of Carboplatin and Alimta wasn’t honest to me at the start of my 18 week course when it promised to do it’s chemo business, ridding away cancer cells inside my body. I was sick-to-my-stomach-shocked to read that there are multiple cancerous spots on my liver and lung that have progressed. (Side note: I have a Patient Portal where all of my scan and lab reports are posted and my scan reports are generally posted AFTER I meet with the doctor so he’s generally who breaks the news to me in person but this time the reports were posted BEFORE my follow up appointment allowing me to read the report myself.) Because I was at my mom and dad’s house during this time I crawled in my mom’s bed and let the tears slowly well up. From under the covers I text my mom saying the results were posted and she didn’t believe me because it was only a few hours after we got home from the scans and she knows like I do that we generally don’t get to see them until we meet with the doctor in person. But sure enough she signed in to my portal and read what I read. Her and my dad came in the bedroom and laid on either side of me. Tenderheartedly, they soothed me as any good parent would do when their child is crying, scared and confused. I’m not ashamed one bit that I lean in to my mom and dad when my husband Adam is at work. They’re just as IN THIS as I am and I thank God daily for the availability He has created amongst my family so I am never alone in these moments. 
Last checkpoint with these scans in March showed the contained cancer and no new growths anywhere. So the tears came fast accompanied by Satan’s lies that I am approaching the end of this battle, that Bentley would grow up without her mother, that Adam would not grow old with me like we had planned. Then an encouraging worship song entered my mind and within minutes Truths demolish the previous thoughts one by one and I found a fast resolve in my mind and heart~

Click here for a listen: Kari Jobe- Let Your Glory Fall

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” -2 Corinthians‬ ‭4:16-18‬ ‭

For the prayer warriors who like specifics, here’s what we are praying over… these cancer spots have NO room in this body, we cry out to our one and only Healer and declare complete Healing regardless of treatments for it is You we look to God!!

Monday’s CT scans:

Right hylum lymph node: slightly increased to .5 cm

Left hilar lymph node: previous measurement of 1.4 x 1.8 cm progressed to 2.3 x 2.7 cm 

Left lower lobe of lung: previous measurement of 1.0 x 1.2 cm to 1.85 x 1.8 cm 

Liver right lobe: previous measurement .3 x .4 cm to .8 x 1.1 cm

Are you wondering where we go from here? Me too. And we are *kind of* in a limbo because what my team of doctors decided on is to begin Immunotherapy as the next choice of treatment. There are a couple different kinds of Immunotherapy suited for my kind of cancer and the one I am being put on is called OPDIVO, which is a fairly new drug designed to recognize the anti agents of cancer cells and kill them. 

About OPDIVO: The results presented at the American Association for Cancer Research this year in Chicago were based on five years of follow-up with non-small cell lung cancer (NSCLC). Overall survival at one year was 42 percent; at 2 years was 24 percent, at 3 years was 18 percent, and at five years was 16 percent. Having stated these statistics, my oncologist has assured me there are other treatments available if OPDIVO fails at some point. 

While I begin this line of treatment, my oncology team and my highly devoted mother are researching clinical trials in other cancer centers that I might qualify for. This may mean we travel to other states. We’ve also reached out to other experts in the field for second opinions (which my oncologist certainly encouraged). This process could take weeks or even months, but I’m hopeful a clinical trial will find me and I will enjoy many more years with my family and friends and fulfill the calling God has designed for me here on earth. 

In April, I had a Foundation ACT blood panel test to assess any known oncogenic genes. The results still demonstrated the EGFR mutation, exon 19 deletion but included a new mutation called NF1. This is information we needed to assist us in finding a new clinical trial. I’ll hold the details about the search for clinical trials and share later when we have a plan in place. For now, we move forward with my single agent Immunotherapy (beginning tomorrow).

Am I feeling worn out, exhausted, and confused? Of course I am but I am reminded of the biblical story of Joshua and his army marching around the city of Jericho step after step to complete a mission that felt impossible. That’s how I feel. I’m marching because I know God wants me to fight and march my way through this evil cancer. This mission feels impossible when I hear we are going backwards with new cancer spots and I cry tears of intimidation. But I am not in this alone. I know that I am living in the New Testament and the cross has won and I walk in the strength of Jesus and “impossible situations” are not intimidating to my God! 

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.” -‭‭Joshua‬ ‭1:9‬ ‭NIV‬‬

So, swords up prayer warriors! We have some work to do. 

#jenistrong

#considerjesus

May 27th, 2017: A Simple Gift That Went A Long Way

I love that I have been able to share such great news the past couple of months. We were down in the cancer dumps for way too long, right!? SO thankful for my doctors and the team who have my best interest in mind. I am half way through the chemo regimen that I’m currently on (about a four hour session every three weeks) and so far I’ve felt pretty good (just sleepy and the usual pain in my bones) and count my blessings because I know some chemos aren’t taken as well for individuals and I just think I am so so lucky and I pray that one day there’s going to be a cure to all cancers and chemo will be a thing of the past and there will be writeups in medical journals and displays in medical museums about it!! 

So my daily life is pretty much centered around sweet little Bentley, Boston when he’s here, time with my family that lives here in Oklahoma, and occasionally some fun trips and adventures. This last week we went to the Pioneer Woman’s (Ree Drummond) Mercantile and had lunch and shopped around, finishing up the day there driving through the tall grass prairie which was so incredibly beautiful. The memories I’m able to make are so meaningful and had this cancer not come into my life at the time that it did (which was a year ago now- woah! Time flies when you’re having fun! Ha!) I would be missing out on so much. God knew exactly what he was doing when he slowed me down to recognize His beauty in the world… from seeing the lands He created to the beautiful human interactions and relationships that I have and am building. Despite the facts of cancer, I live a beautiful life. Thank you Lord for all of my blessings. 

On another note my mom and I have been talking about my Nana and Papa (her parents) quite a bit and we think certain birds that visit us in the backyard are their spirits and that makes us feel so happy and full of love! Does anyone else get visits from deceased loved ones?? My dad is good at reminding me how beautiful our afterlife will be, so I read scripture and try my best to use my most creative imagination of what my Nana and Papa are doing in heaven and how they’re with Jesus and my heart starts singing with JOY when I go there. 

When my Papa passed last year, my sister went with my mom to say goodbye and to start packing up some of his things. My Nana passed away years ago when I was fairly young but one of the things I remember most was my childhood visits to their home in San Diego and next to her rocker was this beautiful crystal-like candy dish with a removable lid. So when my sister was at my grandpa’s house she asked me if there was anything she could bring back for me, something that I wanted. The candy dish was my one and only request because I could close my eyes and picture being there looking st the beautiful dish, sitting on her lap, just rocking and enjoying time together. 

Unfortunately the candy dish broke on its way from CA to OK. I was extremely sad to say the least. 

Over a year later, a friend from back home sends me a home made candle. (It wasn’t a complete surprise since she asked if I had preference of what it was in; coffee mug, mason jar, etc. Ias well as which scent I wanted and I told her to surprise me but I wanted the Gardenia scent.) When it arrived, you guessed it, it was in a beautiful crystal-like dish with a lid. Just like my Nana’s dish only a little smaller in size. This sweet gift has been one of the most meaningful gifts anyone has sent on this #jenistrong journey. I get to look at this beautiful, hand crafted candle each day and just relish in the happy memories is brings me, which comfort me tremendously. 

Cailey, I’m so thankful that you would take the time that you did to give me something so beautiful. I truly am stronger today because of people like you who have lifted my spirits and supported me this year. Thank you x a million.  


Check out some more of her beautiful creations here!
http://Aestheticaromas.com

Psalm 23:4 reads “Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” 

God hears our hearts. He pursues us constantly. If we slow down, we will see how much, even in the smallest ways, He loves us and cares for us and wants us to count all things joyous. Giving immense gratitude for a simple candle might sound silly to someone but to me, it was a reminder that in the dark valley I am in, it is of no concern to me with the Light of Jesus in my life. He makes all things happen and I pray that someone who reads this post slow their life down and listen to the spirit lead them to see the signs God is sending. Comfort. Love. Grace. 

Until next time my beautiful, spirited #jenistrong family, xo

#considerjesus

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