#jenistrong here, there, everywhere!
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.
Non-small cell lung cancer (NSCLC)
Adenocarcinoma, Stage IV
w/ EGFR Mutation https://www.mycancergenome.org/content/disease/lung-cancer/egfr/4/
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.
|Cancerous Areas||6/14/16 Scans & Report||5/18/16 Scans & Report|
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|
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)
|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|
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
|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
|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)|
|Percocet (allergic to morphine)||As needed||Pain|
Boswellia, Curcumin, CBD Oil
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.
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).
@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.
“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.”
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.