There’s no better way to start your morning than to connect with a kindred soul who uplifts you and tells you just the right things you need to hear…that’s what I got this morning when I spoke to my boss who I also have the pleasure of being friends with…a rare work relationship and truly a blessing to have someone who not only encourages me but wants to genuinely see me grow and thrive. During our phone call, she mentioned that she had watched the movie The Shack this weekend, and I decided to watch it with Tim this morning while we waited for any news…
If you have never watched this movie, and plan to then I suggest you also be prepared to have multiple boxes of tissue and be ready to look all puffy eyed with snot pouring out of your nose like Tim and I did while we were watching this…
Mac’s wife, Nan, lovingly refers to God as “Papa” – such an intimate and pure term of endearment that encompasses how close her relationship with Him is. I’m not going to give any spoiler-alerts but YOU NEEED TO SEE THIS MOVIE. My favorite quote:
“Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies. Don’t ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.” -Papa, The Shack
We were hoping to get the final biopsy results today but the closer that we got to 5 p.m., the more we realized that we weren’t going to get the answers today we were hoping for. Super bummed, but all the waiting did give us a chance to go outside and walk around the building for some fresh air today. Tim and I also decided to treat ourselves to Olive Garden…not exactly romantic – but we really aren’t the candle-light dinner kind of couple anyway…we put on our “stetchy pants” and carb-loaded on breadsticks, cheese sticks and pasta while we watched Aliens on my laptop…that’s us being “fancy”…
Not Keto-friendly…don’t care!
I’m guessing God’s giving us an extra day…the calm before the upcoming tornado that is going to be tomorrow because the final diagnosis will be in….meaning I’ll get transferred to the Chemo floor and possibly have to start radiation therapy on Friday…and it’s going to be go time…
We received a visit from Ted, Joyce and Nathan who prayed over us. Joyce gifted me with literally a ball of hope =) (Thank you Joyce!) and some delicious cookies that we decided to share with my awesome nurses who have been spoiling me!
My little ball of hope from Joyce…”Be strong and take heart all you who hope in the Lord.” – Psalms 31:24
We also had the pleasure of being FaceTime’ed in by my sweet Charise to join Impact’s Soak night…Kaiser has excellent wi-fi and we are so thankful for technology! We were able to connect live to receive prayer. Thank you Jesse and Sheila for stepping in for us (and thank you Sheila for doing our stinky dishes!) The Spirit was moving tonight and though we are miles apart, Tim and I felt the warmth of the Spirit wash over us as members of our church family extended their hands of prayer and asked for a complete healing, miracle and full restoration of my health. I’ve never had the experience of being the focus of prayer like that and it was truly amazing…
“Praise the Lord, my soul; all my inmost being, praise his holy name. Praise the Lord, my soul, and forget not all his benefits— who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle’s.”
-Psalm 103: 1-5
I’ve received so many words of encouragement and verses and I never expected to get so much response to my blog posts…thank you so much for taking the time to walk this journey with me. I know many of you that I love dearly are saddened by what’s happening to us…some of you even angry…
“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
Don’t be angry or sad about this, friends! God’s working through this situation. I’m a fighter…a take no-crap, suck-it-up-buttercup attitude spit-fire in case you haven’t met me in person…I’m the daughter of the King who is not of this world, which technically makes me a freaking warrior princess…so don’t be angry or depressed…be excited with me that I’m going to fight this with everything that I’ve got because God is going to use this time for His good…and if that means that some days I’m going to feel crappy and my body is going to be weak for a little while but I come out at the end with a renewed mindset and a stronger relationship with Him…well then…
Finally a full night’s sleep…except for poor Tim who chose to stay the night and had to sleep on the couch and might as well have slept straight on the floor…but he was a trooper and misses sleeping next to me so he “sucked it up buttercup” for me…He slept maybe three hours total last night so I sent him to my mother-in-laws at 7 a.m. to get freshened up and rest on a real bed before he sits with me for the rest of the day.
Sometime in the early morning my assigned RN had written that my goal for today:
RELAX…
I got a phone call from Dr. Shah at 8:30 a.m. and he explained that they were going to push back the scheduled PET scan pending the final results that should be in tomorrow since they had enough evidence based on all the different CT scans to not worry that the cancer has spread to other others yet. One more night and hopefully tomorrow I will have a final diagnosis. Patience has never been a strong suit for me…so not knowing…not being able to google and research is driving me up the wall! So I spent the better part of my morning trying to self-diagnosis myself through MayoClinic and American Cancer Society…and going down the rabbit-hole of chemo and radiation side effects…
RELAX….
The MRI I was supposed to have yesterday was accidentally scheduled at the Ontario Campus so they had to change the order for me to get it done here in Riverside. So when Tim came back he shut my laptop down and we spent most of the time napping and watching TV- bliss in lieu of the tornado that has been the last four days waiting for my MRI…we learned that we really love watching Flip or Flop and Chip & Joanna Gaines…that Tim memorizes e v e r y single line of e v e r y single Star Wars movie since today they decided to show a Star Wars marathon…and we learned that we really enjoyed being quiet…no words needed…just being close to each other being bums and recharging our low marriage batteries. A beautiful bouquet of flowers was delivered to my room (Thank you Padget, Eldred and Lazo family!)…and the smell was so overpowering that I literally HAD to stop to smell the flowers…At 1:00 p.m., we got a surprise visit from church family…who gifted me a snuggly blanket that is sitting on my lap now (Thank you Kelly & Van!)
At 3:00 p.m. I was wheeled to the MRI building. If you’ve never had an MRI – it’s pretty gnarly. You feel like you are walking into Cerebro (if you don’t understand nerd speak then we can’t be friends….).
“Avie, did you remember to remove your bra and any bobby pins in your hair? We don’t want the bobby pins flying and piercing your head…” Awesome! Have you ever really seen that happen?!?
They give you two cheesy, yellow stale marshmallows for earplugs to hopefully drown out the sound (it doesn’t) and then they strap you down by the head and tell you not to move. Then you lay on a flat bed that wheels you into a tiny, tight tube where the wallsarethisclosetoyourface…and for forty five minutes you feel like you are stuck on the inside of the dryer with a loose wrench…I spend the first 10 minutes pretending I was in the movie Contact with Jodie Foster…the next 10 minutes pretending I was at a horrible dubsmash concert and I was trying to make up tunes to match with the clang-clang-whomp-whomp-ehhhhh beat…and rest of the time practicing “mindfulness” meditation exercises that I learned in my MFT program before I started having full on back and forth conversations with the voices in my head I hadn’t visited with in awhile…finally I feel the bed moving out….
“You did great my dear! Now I’m going to shoot you with the contrast through your IV and stick you in there for another 10 minutes, ok?” Well, considering you have my head and arms strapped down, I don’t really have a choice do I? “You’re going to feel a nice warm feeling wash over your whole body, Avie..hold tight!” OMG OMG OMG I just pee’ed my pants!!! “Nope, that’s the contrast dear…you’re fine…”
After 10 more minutes, it’s finally over and I feel like my head is going to explode. Definitely my least favorite test so far…
Back at my room, Tim and I get to spend time with one of our favorite families, the Laws and take up the entire time just enjoying each others company…and trying to figure out if there is enough space in my room so that we can practice some jiu jitsu moves…
The kids are feeling sick and my mother-in-law sounds exhausted on the phone so I sent Tim home despite his protesting…I think being away from home has something to do with them feeling crummy too on top of getting spoiled and getting lots of sun with grammy and papa this weekend…
“Truly, my soul finds rest in God my salvation comes from him.” -Psalm 62:1
It’s quiet now, in my room all by myself and my heart is full. Before this weekend, I found myself longing for some downtime…I never had time to do things that I wanted to do because I was caught up with getting things done errands, chores, grocery shopping, work….but today reminded me that in the simplest of things, napping with my husband, watching TV, getting a new blanket, smelling the flowers, truly being present in the company of friends who feed your soul was one of the most relaxing and restful days I have had in a long time and it wasn’t anything extraordinary or extravagant…I’ve been caught up too long in the MRI noise of the world…but what I need to do is relax….
Got it God…I’m hearing the message loud and clear now that you are forcing me to sit in the quiet….RELAX…
“Then Jesus said to his disciples: “Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear.For life is more than food, and the body more than clothes.Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds!Who of you by worrying can add a single hour to your life?Since you cannot do this very little thing, why do you worry about the rest?”
-Luke 12:22-26
DAY 1, Friday, May 26, 2017
What the heck happened?
It was supposed to be an easy morning: optometrist appointment at 8 a.m. and then a quick trip to Kaiser Urgent Care in Wildomar and then back home to relax for the long weekend. Eye appointment went fine, just a new pair of glasses and an order of contacts to switch off. I thought about skipping the Urgent Care trip since it was 10:00 a.m. by the time I got done with my eye appointment and I was just tired – plus it was probably just taking my body longer to recover from the nasty flu that hit our family in March. I decided to get it out of the way, we had jiu jitsu events coming up on Sunday and I wanted to ask for an inhaler to help me breathe so I wouldn’t turn purple again while rolling.
Man I really need to up my cardio…
The day before, Tim and I were training and I fell out of the warm up…the freakin’ warm up…one lap and I couldn’t even make it without seeing stars and wanting to pass out…
So into Urgent Care I went, coffee and new book in hand, prepared for the longer waiting time because it was Memorial Day weekend. When I finally got in, the PA asked how long I had been having a hard time breathing.
A few months now? I started wheezing a few weeks ago when my coach pointed it out…but yesterday was the first time I really felt like I couldn’t catch my breath and wanted to topple over.
The PA put in orders for a chest x-ray and more waiting. When she called me back, she pulled up the image and said there was an “opacity” that was coming up…the left side of my lung was clear but the right side was really cloudy and since they were a small urgent care, I would have to drive to Kaiser Riverside for a CT Scan.
“It’s more than likely just walking pneumonia like you said, but I want to make sure that it’s not something else, Mrs. Barron.” Great. 45 minutes in holiday traffic going towards Riverside? So much for my “easy morning”.
I checked into Kaiser and get sent straight to Imaging for my CT scan. 45 minutes later I’m waiting in an Urgent Care room. A new PA comes in and asks me the standard questions, what are your symptoms, when did they start, etc. The PA pulled up the CT scan and stood there staring at the screen.
“I’ll be right back.” OK great.
The PA shuts the door behinds him and makes a call in the next room.
“Get me oncology or IR right now in Urgent Care”. Well that’s not good…
15 minutes later a nurse comes in and leads me to a quiet area in the back.
“Mrs. Barron one of our specialists is on their way to talk to you. Just relax back here for a while and he’ll be in here shortly.” Oncology – private room – crap.
Dr. Shah comes in and introduces himself as the attending Internal Medicine Physician.
“Mrs. Barron I wish I could have met you in better circumstances…” Double crap.
“There’s no good way to say this but we found a mass on your right upper lung.” Blink. Blink.
“It’s pretty significant in size and we are going to need to check you in to monitor you over the weekend and hopefully get a biopsy.” Mass…biopsy…cancer? “Well we can’t definitively say its cancer without a biospy, Mrs. Barron.” It’s Avie. Stop freaking calling me Mrs. Barron. So you’re saying I have cancer… “Is there someone you can call? To gather some things for you?” I need to call my husband right away and get someone to take care of my kids…
So I Can’t Just Take a Claritin?!?
I call Tim and try to figure out how to say what I’m about to say to him on the phone. How do you tell your cancer-surviving husband who’s been in remission for 14 years that his wife now has possible cancer? Well, I verbal diarrhea’ed it as soon as I heard “Hey.” Tim was by my side in less than an hour. My rock, my stronghold, turning the corner to see me with a “this better not be one of your stupid pranks/what the heck is happening right now” looks…
Dr. Shah comes back to meet with both of us and again has to explain to Tim what he tried to explain to me, but I only retained 20% of what Dr. Shah said and I translated it to Tim as “They found a small mass and I have to stay here for a few days.” Dr. Shah once again pulls up the CT scan image and measures the big white blob on my right lung – 10.8 centimeters. “We are very concerned because you have a lot of fluid build-up and the mass is pushing on your superior vena cava which is why you can’t breathe.”
“Babe…you said it was a small mass…” Yeah, it’s tiny on the screen!
“Babe…it takes up your entire freaking lung…” So, I can’t just take a Claritin?
Dr. Shah tells us that I need more testing and that his first guess would be that this mass is a lymphoma but without a biopsy everything is just a guess. More waiting since there’s no room ready for me. We reach out to our Monday Night Impact Group for prayers.
We get settled in for the night but Tim can’t stay the night since I’m in a double-room, so he heads to my mother-in-laws to sleep. Nothing to eat after midnight, since I’ll be needing a needlepoint biopsy in the morning. How can the hospital possibly expect me to sleep? All I wanted was some antibiotics and maybe an inhaler and now I might have cancer?
DAY 2, Saturday, May 27 There’s a First for Everything….
I’m wide awake at 6 a.m. Couldn’t sleep, tossed and turned, plus my roommate wasn’t exactly quiet, sleeping beauty. I learned way too many intimate details about roommate 5101A and had about enough of her colorful way of criticizing the nursing staff all night.
Dr. Shah comes to see me at 8 a.m. with a I’m-so-sorry look.
“No biopsy today, Mrs. Barron. It’s a long weekend so you’ll probably need wait until Tuesday, but we don’t want to discharge you because we want to start you on steroids and see if the tumor responds. We know that it’s either lung cancer, a lymphoma or a gene cell tumor…all three of those are cancers…based on the CT scans.” Awesome.
Tim comes in a 9 a.m. and I tell him the latest update. We’re pretty bummed at this point. Hadn’t we seen enough cancer in the family? First Tim, then his mom, and now me…what are the chances? I can’t keep it together anymore. Hot tears run down my face as Tim pulls me close like only he can to comfort me – his arms have always been my home. He reminds me that he’s here, will always be here and we need to pray.
At 9:30 a.m. Dr Shah comes back.
“I have better news! I’ve been on the phone with my supervisors and senior staff and we are going to do the biopsy today. In ten years, I have never had both the pathologist and the radiologist come in on a long weekend, so you are a very lucky young woman!” God’s here. It’s not luck.
The pulmonary specialist comes in before 11 a.m. and explains to us that there is a disagreement on how the biopsy should be done. He wants to do a “simple” thoracentesis – stick a needle in my back, between my ribs, through the lung wall and drain the fluid inside to test it for cancer cells. The radiology oncologist, wants to put a stint in my superior vena cava (SVC) to relieve the pressure from the mass. The internal medicine doctor wants to do the needlepoint biopsy but they are worried about puncturing the blood vessels in my chest wall. Surgery is not an option because the mass is too close to the SVC and if they make an error I could bleed out. So we wait until they can agree how to proceed.
The love via text messages, phones calls, Facebook messages, PM’s begin to come in. So many people asking how we are, how we are doing, if there’s anything they can do for us. It’s amazing…
You are loved. You are not alone. I’ve got this.
The afternoon zooms by, more chest x-rays, more blood work – I’ve been poked, prodded, scanned – all without being fed. I’m hangry and Tim is quiet as he watches me go through everything while holding my hand. It’s 4:30 p.m. and I haven’t been able to eat.
Someone is going to get their head ripped off soon if I don’t get some food….
Finally, it’s decided – CT guided needlepoint biopsy it is. My transporter comes to take my to CT for the biopsy. Tim has to wait outside while I get wheeled in the CT room. The radiologist and ER nurse welcome me and explain what they are about to do. Contrast goes into my IV followed by a happy juice cocktail to help with my anxiety. I am going to be awake for the procedure while they stick a few large needles in the front of my chest where I can see so they can get samples.
Relax, daughter. I’ve got this.
No accidental punctures, no damage to my blood vessels and no lung collapse – the biopsy runs smoothly and off goes the pathologist with four samples to test out right away. I finally get back to my room and Tim and I play Monopoly Deal until my food comes in. (It should be noted that Tim only kicked my butt the first five times because I was weak from not eating…) A hot tray of hospital food gets brought in and its divine – anything tastes good when you haven’t eaten for 18+ hours and are stressed out. Tim leaves for the night to get some rest and shortly after, our sweet friends from our home study group come in to pray over me before I turn in for the night.
Thank you, Lord for sending these two beautiful people to remind me that I am going to have a great support system.
“In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ;” -1 Peter 1:6-7
DAY 3, Sunday, May 28, 2017 You Are Not Alone.
Another long night with Roommate 5101A, but the nurses snuck me earplugs, crackers, lumpia, ice cream and sodas to quietly tell me how sorry they are that ended up in a “crappy” situation…After breakfast, Dr. Jinh, the onsite oncologist comes in to tell me preliminary biopsy results came in – its a malignant tumor – definitely cancer. More testing needs to get done to determine the type, staging and if it has spread to anywhere else in my body. They order a thoracentesis for late afternoon with the pulmonary specialist hoping that they can get more clues and closer to a formal diagnosis by testing the built-up fluid in my lungs: cancer cells in the fluid means its spreading…The charge nurse decides to switch me to a different room after noticing that I haven’t been sleeping well.
The day goes by quickly. I’m visited frequently by some of my favorite people in the world, my sweet Katherine, my mother-in-law and sister-in-law, our jitsu coach and his wife, my jiu jitsu teammates. Each new group bringing tons of encouragement, prayer, love and laughter. It’s overwhelming in a fantastic way to know that people are there to support you…like really support you when you need it. Not just, “I’m here for you” and keep scrolling to the next FB post…but a genuine what do you need, we’ve got the kids, we can clean, fold laundry, drive you, cook for your family, feed your dogs, lift you in prayer, lay hands on you and love on you kind of support. Tim and I decide that it’s best from this point forward to ask for space because the next fews days are going to get harder…much much harder…
You are not alone. Let them love on you and help you.
Love love love my CG Menifee family! Fighting with me and for me on and off the mats!
After everyone leaves, Dr. Ninan comes in. He performs the thoracentesis and pulls out 1000 ccs of fluid (1 liter or half a soda bottle for those who can’t math…). My chest burns and I can’t stop coughing. Dr. Ninan says its completely normal now that my lungs have room to expand.
Another CT scan before I’m allowed to settle in for the night…this time to scan my abdomen and pelvis area for enlarged lymph nodes. Tim tucks me in and heads home to pick up the kids to bring to my in-laws house for the night. We’ve decided to keep them close until I can go home so they can see me when they want to. Up to this point, the kids were with my parents enjoying some time on the beach with family. We didn’t tell them anything before they got dropped off on Friday other than Mommy is feeling sick and has to see the doctors to find out what’s wrong.
That night, Tim explains to the kids that Mommy has a growth on her lungs that’s been making Mommy tired and that’s why she coughs and can’t breathe all the time. He tells them that the doctors and God are healing Mommy and that everything is going to be OK. God healed Daddy and Grammy and God is going to heal mommy but it might take a little time. Mommy needs you to love on her and hug her and kiss her and help her out a little more so that she heals faster. And that’s how we explained to our kids that Mommy has cancer….
Our family of five
“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”
-Jeremiah 29:11
Day 4, Monday, May 29, 2017 Your Faith Has Made You Well…
Roommate 5102B hates me. I turned on the overhead night over my bed last night to read my devotional and spend time in the Word and she yelled at me to turn it off. I got up to use the restroom and she told me to quit making a racket…I sat quietly with my headphones in trying to give her grace because she seems to be in a lot of pain, but I got labeled as a disrespectful little wench…My charge nurse wasn’t having it…I got moved again, but to a solo room with no roommates because the nurse said “You don’t need that negativity in your life. You let her be miserable and you keep that joy little lady!” I’m now in 5105…
Tim comes by at 9 a.m. Starbucks in hand and Dr. Shah follows him. Still no final results yet from the biopsy and no results from the lung fluid but CT scans are looking a lot better with the fluid gone. The mass hasn’t responded to the steroids they have been giving me but it might still be too early for us to see results.
Dr. Jinh comes in after. We ask him what the next steps are but are told we just have to wait. More than likely I will need to have a localized radiation treatment to try to shrink the tumor since we can’t operate on it. For the time being, his tentative plan is to send me to PET scan in Ontario tomorrow with an order for a brain MRI as well…more clues to figure out all the pieces to finding out what this thing is on my lung…He would like for me to start chemotherapy while I’m here at the hospital followed by six weeks of chemo out-patient treatments, 5 days a week. That’s the penciled in plan for now unless the final biopsy tells us we need to go a different route…he is hoping for results on Wednesday.
Tim and I finally have time alone just us. We’ve hardly had time to really check-in with each other. My partner in crime who’s been trying so hard to keep a strong front finally starts to let it out…”This sucks. It’s not fair. I wish I could take the pain for you. I don’t want you to go through this…”
“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 4:16-19
Tim went through his cancer battle 14 years ago. He had surgery and rounds of chemo. He was in the trenches of the battlefield that I am going to step onto soon. My husband always tries to place the weight of the world on his shoulders so that my burden is light and easy. God’s calling for me is to be his helpmate – not to stand by and watch him carry the load on his own. I believe that God’s placed the perfect “nurse” to help me through this – through Tim. He is going to know exactly what I’m going through mentally, physically, emotionally because he has BEEN there before.
Don’t tell me that is just a coincidence and don’t tell me its not a God thing.
Pastor Ryan and Tracy come to visit with us. They pour out their love, their encouragement, their hearts and their prayers for us. They are with us to say the exact words that God wants both Tim and I to hear to know how we need to go forward with what’s coming. They speak to us at the same time, yet God plants a unique message in each of our hearts. This road that is ahead of me is not just about me. Its about us as couple, us as parents, us as family, us as part of church family…
“Rise and go your way; your faith has made you well.”
Luke 17: 19
God is asking us to surrender to Him completely before we get ready to fight…to follow His lead without knowing where He is sending us…to wait on His timing without knowing when it will come…to expect a miracle without knowing how God will provide…to trust in His promise without understanding the circumstance.
Let go so I can get to work. You don’t always have to be in charge…I’ve got this…-God
Today has been emotional. Lots of tears and truths and Tim and I feel completely empty. But not empty in a depressed, sad way – empty in the sense that we realize that we need to release our fears and worries to be able to receive what God is getting ready to place in our hands.
Tracy suggested I blog…that it might be therapeutic to put it out there…so here it is..the start of my blog…I want to be able to look back and remind myself of how He is moving in our lives once the chemo brain sets in and I might forget the details…so I’m going to try to catch them and update as I go along…
Breathing Again... 