clinical trial update.

How valuable is your health to you?

This is the question I keep coming back to while Josh and I are in Florida. How valuable is your health to you?  Is it worth not being home, away from family and friends, away from my sweet Wylie pup? Is it worth all the plane flights, hotel stays, all the costs that come with that? In theory, wouldn’t you say yes, of course my health is worth sacrificing all those things. But when you’re living it, it seems so much harder than the theoretical plan in your mind. Because now your schedule is not your schedule. I’m always living by a hospital schedule and doctor’s appointments, but now it’s different. The appointments aren’t just dictating my days; they are dictating my travel plans, when I can book a flight and board a plane to come back home. Clinical trial land is so much different than regular chemo treatment life. So specific in what the scientists need, the timing, everything.

Are we doing the right thing, putting our faith in this new drug? It involves making arrangements to come back to Florida once a week for a couple months. And I probably shouldn’t travel by myself in my health, so that’s not just one plane ticket but two. Or do you choose to just live there in Florida for a temporary period of time?

I know this is all temporary. The first two months of this trial are the most demanding of my time. I have to come back once a week for the next couple of months for bloodwork. The first day I will be fasting, taking the medicine, and then bloodwork. The following day I’ll be eating a high-protein meal, taking the medicine, and then bloodwork. This is done all to see how taking food with the drug interacts with the medication. In my mind, this seems almost ridiculous to travel back to Florida for: bloodwork, really? I get that done all the time just 15 minutes away from my house, can’t we just do those specifications there at Nationwide Children’s Hospital? But no, this is science, a clinical trail. Specificity and sameness across all patients is needed to conduct these medical experiments. And I am a medical experiment. But I’m human also and can’t be confined to a lab or notes. My body may be examined and scanned, poked and prodded but what about my heart, my personality, my spirit, my soul? They can’t be contained to these experiments and crave experience instead.

I know I should grasp strongly onto gratitude, but I feel like I’m slipping and going to fall any moment. I’ve cried every other day while we have been here, remembering what I am missing from home. Every time I see a dog, I miss my Wylie. (Who knew you could miss a pet so much?) I don’t know what is wrong with me. I should be grateful. Grateful that I can even make plans happen to get down to Florida. Grateful for all the family and friends who financially supported us to get down here and stay here even longer than planned. Grateful for the new drug itself, it’s hopeful promise of health. Grateful for Dr. R and Soha who have moved heaven and earth to get me started so quickly on this clinical trial, asking favors to get scans done in record time for me. Grateful that I’m not alone but have patient Josh with me, who is willing to endure long boring hospital days without complaining. Grateful for some fun at Disney and the beach. Grateful for all the behind-the-scenes prayers that I don’t even know about for this trial, for my health.

Help me to hold onto these things Lord, and not the things that I am missing.
Help me to remember that this is all temporary.
Help me to remember why I am here: this clinical trial, the hopeful promise of health. 

The first day of the clinical trial medication, Josh and I prayed in the waiting room. The first time I took the four pills, I prayed before swallowing each one. Oh God, please help me was all I said before swallowing them whole. Such a simple prayer filled with so much desperation, pleas, helplessness.

Today is day 3 of the clinical trial drug, and I’m feeling it move within my body. After so many years, I can even determine pain that comes from cancer growth. Amazing. And now I’m feeling the reverse; I’m feeling cancer nodules being gripped by the new drug and slowly dying within me. I feel my lungs and their new heaviness instead of cancer pain. I feel my right shoulder and arm feeling as if they are “asleep,” and I’m welcoming this strange feeling over the unbearable and uncontrollable pain I had been experiencing. I’m feeling a slight bit of hope. Help me Lord to welcome it and hold onto it.

Josh and I thankfully have a four day break from hospital visits. Pretty much everyday this past week we were at the Moffitt Cancer Center. So now I can blissfully pretend we are here in Florida for vacation instead of cancer treatment. I want to go to the beach and just read and listen to the waves and fellow vacationers. I want sunscreen and laying on towels and looking at shells. I want good seafood served outside of Red Lobster. I want to relax and escape from the cancer world, even if its just for four days please.

I can’t wait to come back to Ohio and see everyone and have my Wylie boy lay on my lap again. I can’t wait to be back home, in my own bed, lounging on my couch with a good book, sitting on my screened in patio, enjoying Ohio’s humid summers.

Like Dorothy said, there’s no place like home.

Thanks all for your support by reading this blog, praying for us, donating to my GoFundMe and spreading the word about it.

 

husband.

I had the honor of being a part of two weddings this past weekend. As I was getting ready, doing my make up and chatting with the other members of the bridal party, I was collecting memories of my own wedding day. Hearing the vows said by each couple reminded me of my own promises I made to Josh on December 2, 2017. It’s amazing that we have now been married for a year and 4 months! Time has flown by, and we have experienced some new things that all newlyweds go through: we have moved twice, adopted a dog, had some tiffs over the small stuff, endured the process of job searching and being excited over starting a new job. We have also experienced some things that some couples don’t experience until decades of being in marriage: making treatment decisions, hearing not great news over scans, traveling for clinical trials. I realized that though he is my sweet, quiet man, it doesn’t mean I have to be quiet about him on this blog. I mention him often in the background of my life, but he’s my teammate through it all. He deserves a bit of a shout out now and then.

I also think of us as a team because of Josh’s wedding vows. Early on in marriage, Josh had to consistently remind me that he is always on my side, that we are on the same team. I have learned that by having this mindset, I give Josh the benefit of the doubt, that I give him grace, the same grace that God freely gives us. Even though he doesn’t need to “work ” for this grace I give him, he has proven time and time again that he is always there for me, always loyal, will fight for me on my behalf for everything. He is my fierce protector and would do anything to take away the pain and cancer for me.

And Josh shows me grace all of the time. For a quiet, behind-the-scenes kinda guy, he always patiently listens to me no matter the topic of conversation, from our sweet Wylie pup to what errands we need to run. He’s always willing to be in the hospital with me, from scans to waiting on chemotherapy to arrive to spending the night in the most uncomfortable hospital make-shift couch-bed. I knew Josh was loyal, but I didn’t know I could experience such faithfulness from one person. He’s learned how to give me shots at home to flushing out my PICC line at home every night, no matter what hour he gets home from his policing shift. He’s patient with our crazy Wylie boy, luring him back inside with treats and love, and sometimes even chasing him around the backyard.

I’ve seen Josh grow so much as well over this year+. He’s learned how to communicate better his emotions and what he is thinking and stressing over. He’s grown in his confidence in prayer; he requests every day before he heads off to work for us to pray together, knitting us closer together and to our Heavenly Father. Praying with him before work has become something I really value and treasure during our time, and it always changes my own perspective going into the rest of the day. And Josh has grown in his commitment to the Word, reading eagerly every day for his spirit to be fed the words of truth and wisdom to guide through tough times and decisions at work and at home. I really respect and admire his growth and transformation that has come from his consistency in prayer and reading the Word. Not only does Josh’s spiritual growth and maturity benefit from these things, but our relationship as well! Pleading for things from our Dad has really grown us closer and helped us become one as the Word says that we are now “one flesh” (Mark 10:7-9).

So, today I’m here back at the hospital, thinking of the sweet man that dropped me off this morning. We’ve been in this room I’m sure before, waiting together on chemotherapy and drugs. Now we are in a perpetual waiting room called Life, waiting on a new clinical trial that is supposedly coming to Nationwide Children’s soon. And yet, here we are, still waiting. The trial is now currently being investigated in Florida, so now we are looking to go there. Hopefully they are still covering the cost of travel. Please pray that our wait—to either hear back from Children’s or Florida—about getting into this clinical trial. It could be a game changer for my health; I recently went back to a harder trinity of chemotherapy drugs that have worn me out the past couple of weeks. I need a break from these drugs, and undergoing a trial of a drug that my body has never seen before could be huge! Please be praying that we will hear back from them sooner rather than later!

Thank you always for your support, thoughts, prayer and practical service to Josh and I. The Searcy team thanks you immensely!

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Josh and I at his police badge pinning ceremony in January 2019. Our families and I are so proud of all that he has accomplished and how he is serving and protecting
our community!

bright.

hello all.

It’s sunny, bright, cold and crisp today. It is the perfect January winter day in Ohio.

A week out from my chemotherapy transfusion, and I feel refreshed. The winter sun is energizing and at the same time calming, grounding me and fueling me. Its brightness is such an encouragement against the bleakness I usually feel.

I truly believe God has heard everyone’s prayers this past week for me. I honestly can’t believe how good I truly feel, just normal so quickly. I am not complaining, and I hope it lasts! I want to ride this energy as long as I can. Sustain me Lord to do your work! Keep me in this perfect peace, this relaxed and content state.

My pain has lessened. Looking back on the past few weeks, I should have experienced a sore and swollen throat, a side effect from radiation. I had been so worried about it, since the last time I had radiation to my neck, my throat was burned so badly from the inside out. These past few weeks though, I only noticed a tight constriction of pain whenever I yawned. I tried to hydrate with water and green tea to keep the inflammation down. Praise God for such little pain! What a relief!

My neck and shoulders also have been improving. I no longer feel this ache-y stiffness all the time, and my electric heated shoulder pad proves its usefulness daily. To begin to feel some freedom from such an intense pain for over a year now is a miracle! I cannot begin to express how much this impacts my mood, my mindset, my perspective, my quality of life. Thank you Jesus!

I hope this report brings brightness to your day, joy, and a clear reminder that God hears our pleas and listens to us in our time of need.

archeological remembrance.

My 6 month check-up scans are this Monday.

6 months?!

Where has the time gone? And at the same time, it doesn’t even seem like I was finishing up treatments 6 months ago, bald, tired, anxious.

Looking back at the time, it almost seems mythical. Like that period of treatment was other-wordly, that it wasn’t even me undergoing treatment then but someone who looked like me, thought like me.

And at times, it seems like the chemo-brain fogs all of your memories from treatment life still. (Is this fog called Denial?) Fog that seemingly separates now and thenpresent and past, and yet I know the fog is really not there, there is really no true separation of time: this is my continuous life.

I thank God that He called me to write more and blog over this past treatment year. It is a thought-scrapbook of myself, for myself, even more so valuable to me than to any other reader. I re-read at times and am truly amazed that I could even formulate sentences back then; a true gift of grace He gave me unique moments of time, of clarity, of ability to write, reflect, remember.

I’m on an archeological mission: re-reading old blog posts, un-earthing blog-bones, carefully examining and lifting them up from the earth. I always wanted to be an archeologist growing up, and who knew that one day I would be digging up myself from ancient artifact. Because yes, the past does seem ancient and distant and like it was another world at times. And yet, I dust off my blog-bones and see that truly they are the same ones living in me still, still, alongside the living bones who at times host cancerous cells, the radiation damaged bones, and currently my broken bone in my arm from a fall.

I printed off a physically copy of my blog posts for myself at Staples about a month after treatment ended, Staples bounding it with its spiral black plastic. And a shock: about 200 pages I printed off. 200 pages! Paper upon paper bound together, thick as a bone. And to have this blog in hand, so physical in nature, reminds me that yes, this did happen. You have had cancer 3 times in your lifetime, and this documents only the latest. (And if this was only 200 pages, what would the other 2 times bring?) The 200 page bound book is heavy; my life is indeed heavy. It sits on my dresser, even more physical reminder than the blog itself, published electronic words and sentences floating somewhere in mythical cyberspace and only obtainable through my phone, my laptop.

I look at the bound blog-book at a distance to briefly remember;
I read to remember grace and gratitude;
I slowly edit to compare my life then and now, and in hopes for a future for myself, for this blog-book, that maybe it will one day future-time might be a real, physical book (if He wills it.)

I am trying to remember and reflect and overall have more gratitude. I truly believe that returning praise and thanks will guard my heart from its anxieties of upcoming scans, of health-future in general. I am not so anxious for these upcoming scans as I thought I would be, but oh, I know I must still prepare for myself for the next several days because emotions seem to shift at times so quickly.

I’ve been reflecting on how much the people of Old reflecting back on their own pasts. In fact, at times God commanded them to take a moment to reflect, create a makeshift altar in that moment to think about what He had just done for them. And then there are the beautiful, historical psalm-songs, melodies of rememberance, each line sung to reflect and thank on how God came through in Egypt, in Joseph, throughout Israelite history (Psalm 105). Remembering the past, how He has come through time and time again.

psalm 105

Oh give thanks to the Lord; call upon his name;
    make known his deeds among the peoples!
Sing to him, sing praises to him;
    tell of all his wondrous works!
Glory in his holy name;
    let the hearts of those who seek the Lord rejoice!
Seek the Lord and his strength;
    seek his presence continually!
Remember the wondrous works that he has done,
    his miracles, and the judgments he uttered

Remembering the past not only unearths gratitude along with the artifacts, but another treasure: confidence. He is always continuously adding to His resume of faithfulness to me, and in looking backward can inspire confidence in moving forward to future-hope.

I long to be confident as He calls me forward, so I read on and write on and reflect on.

Help make my moves and thoughts be confident in You and Your provisions for me!

2016.

It’s truly incredible to think and reflect that another year has passed. I am still not used to thinking and saying that it is now 2016. 2016! And yet, since finishing chemotherapy treatments this past summer, I’ve been thinking more and more about time, time passing, and comparing where I was a year ago with where I am at now, and it amazes me. To think that one year ago, I was about to start radiation in the midst of chemotherapy again, and now here I am, cancer-free, chemo-free, radiation-free. Oh, there is so much the body can do in just one year!  

And yes, I am re-reading old blog posts once again like a time-capsule, breaking open the box of my past thoughts, holding them like distant treasures. I am still in awe of what I was hoping for, praying for, predicting for and how at times I was so close and at other times so far away from knowing the wonderful surprises of the new year of the Soveriegn Planner. (His timing is always so good!)

From time-capsule blogpost “dear 2014”

2014, you somehow knew what I needed:

DEPENDENCE.

On God.
On prayer.
On the Word.
On family.
On friends.

Oh, I’m learning now how much I actually already knew independence, pride, selfishness, and that what I thought was adult, independent life in beginning of 2014 was really a mythical mirage.

[…]

I only ask some things of you now, dear friend 2014.

2014, can you whisper to 2015 and ask of the same things, to continue to grow me in humility and grace and dependence and gratitude?

2014, please show up again in my thought life and mind during 2015, reminding me of what happened between us to instill confidence in the Author and Creator of you?

2014, thank you.
2015, thank you in advance.

oh 2015, how you did continue to grow me in humility and grace and dependence and gratitude, and how I am learning deeper still that I have so much more to learn and understand about them. Because sometimes, more often than I like to think, my mind relapses on lessons learned, and my heart must be stubbornly taught once again. And yet, He is a faithful and patient Teacher (phil 1:6).

For instance, I see my heart learning more and more about the discipline of gratitude, that our hearts need it even more in times of goodness as well as suffering. Gratitude planted and sprouted within the soils of my sufferings, and now once the daily sufferings subside, the gratitude subsides with it, along with its by-product joy. Oh, how these little seedlings of gratitude and joy seem to wilt with neglect as my heart thinks that the growing “stability” of normalcy, of life seems to stem from self-centered me. Oh, how the seeds of gratitude must push through even harder soil of everyday-life clay in my heart!

oh, and there is so much to be thankful for for 2015!

  • Finishing chemotherapy treatments for the 3rd time in my life
  • My hair growing back
  • Being a Patient Champion for Nationwide Children’s Hospital Columbus Marathon
  • Josh and I dating
  • Meeting my favorite band Punch Brothers with one of my best friends Katie
  • Getting to move back into my house with wonderful and silly and stay-up-all-hours-of-the-night and supportive roommate-sisters
  • Tutoring at OSU once again
  • Meeting and making many more friends

There are the day to day things too of 2015 I could thank Him for, from sleeping in to early morning CABS bus rides with friends to drinking coffee without upsetting my stomache to recovering my memory more and more…These are truly the daily seeds of gratitude that I must plant in my heart and watch its field harvest grow bountiful.

dear 2016,
I ask the same of you as I did of 2015. I know He is sovereignly planning all good things in this 2016 year from events to my life, to people, to growing of my heart and relationship with Him. Help me to see them and experience them and thank Him again for them.

2015, thank you.
2016, thank you in advance.