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.

 

FL here we come!

Dear Jesus, you are so good to me.

Re-reading some of my recent blog-posts, I noticed how much I mentioned pain. I’m typically not like that, but looking back now on the past couple of months, I can see just how much pain—not just physically, but emotionally and spiritually—I was in. Physical pain blooming from within my heart, my lungs, reaching more and more for pain medications than I like to even admit. Emotional pain: hearing terrible scan news, being encouraged to have power of attorney and end-of-life conversations. A new tent of sorrow hung between Josh and I, seemingly invisible but always there, connecting us in new ways that can’t even be spoken about (or maybe, we thought if we spoke, the tent between us would just collapse, with what little shelter we had to protect our hurts and hearts we desperately wanted to keep it there.) Thank God for His mercies and comforts He gives on this earth. Great friends from my church who come over with a single, last minute evening text to listen, laugh and cry with you. Doctors who are truthful and compassionate, taking time to listen and explain the best ways they can. Medicines that heal and massages that take away aches and acupuncture needles that create constellations of alleviated pressure points.

We had some good news come to us during the midst of chemo week last week. I got accepted into a clinical trial in Florida! I am very excited about this since I have been waiting for the trial for months to come to Columbus, but it keeps getting pushed back because of legal reasons. How ridiculous! People are waiting eagerly for this drug, myself included! So I told Nick a couple weeks ago to put me on the wait list for the Florida study, and about 10 days later I hear that I’ve been accepted. So much for all the months of waiting! The clinical trial  is specifically for relapsed Ewing’s Sarcoma patients. This is very exciting news! I have never had the opportunity to be part of trial that is specifically for relapsed Ewing’s Sarcoma patients, so this could be huge.

So many of you have donated or shared my GoFundMe for travel expenses. Thank you so much for your generous support of Josh and I! We will be heading to Florida early May and hope to stay for bit to vacation some. We definitely need it!

Please be praying for us for safe travels there and back, and for connecting with the doctors and care team there in Florida. It is so important and vital to have a good connection with the doctor, to literally trust your life and health to their opinions and decisions. If there is no respect mutually or no warmth and concern, that’s a bad sign! I’ve definitely learned that over the years just how valuable the patient-doctor relationship can be. I’m so grateful for all of the amazing and loyal ones I have had who God has used to keep me here over the years. Definitely wouldn’t be here without their wisdom and actions!

I’m currently at the hospital now as I type this. I returned here on Wednesday because of a fever. Anytime I get a fever, I have to come in (typically to the ER because of the timing) in order to make sure I don’t have an infection. Now, over the years I’ve had many, many fevers but I have never actually had an infection. Of course, this one time that I just dreaded checking to see if I have a fever, dreaded making the call to my doctor, I actually have an infection, technically 2 different types of bacteria trying to grow in me. That Wednesday morning I just woke up dizzy, and thought it was potentially a migraine coming on. And then I started sweating, and now here we are, on hooked up to an IV poll with fluids constantly running, various antibiotics flowing and steroids streaming within me. I’m supposed to be here until Monday at least :/ Pray that I don’t go crazy here! Or that something happens that makes me stay even longer. I feel pretty good actually, so hopefully I can get some writing in and use this time productively instead of watching the Food Network haha.

Please pray for a quick recovery and for a healthy body to start off this clinical trial right. Pray for peace and wisdom as I go through all the legal paperwork/will things. It can be a bit overwhelming to just take time to think about and process. It’s been a slow one, but I have great help and even Greater Hope to turn to.

Thanks always for reading!

poetry experiment.

I’ve been thinking of writing poetry again.
Oh, how I have missed it!
And I forgot how much
I missed it.
How do you forget your first writing love?
I think going back to age 13,
before cancer,
will jump-start my creativity.
Not like it’s not there—
I feel the words,
see them like snowflakes
in the snowglobe of my mind
and I am trying to catch them.
Chemo snowglobe mind—
I must shake myself everyday
just to make sure I am still alive and functioning.

I am a dog mom,
mother to a white fur baby toddler,
and a police officer wife.
The Officer longs to fight the crimes
that go on inside of me more than anything.
And maybe that is why
he became a cop—
to try to protect me from the outside world
since he can’t protect me from within
against my very self/cells.
Cancer has crime scenes
marked all over my body—
from bones to lungs to hips—
the evidence is everywhere
and the verdict is guilty.
And although it tries to murder me
with every new relapse, scene, and place
I am escaping by grace.

And maybe this poetry thing
is just what I needed.
A reminder that I’m not just an essayist
but a poet.
My heart sings psalms
as the chemo drugs calm
the overactive cells within me
saying: breathe
and live
and give life to words and others.
Your end has not come.
Do not daydream of funerals or tears
All of those fears are misplaced
because this writing space
creates vision for the future:
hope.

happy new year!

happy new year!

I hope the new year so far as treated you kindly with fresh perspectives, warm surprises, and warm blessings. In my household, the new year has already been eventful: Josh graduated his police academy training and ceremony after ceremony has been celebrated, appreciated and endured. Josh gave me the honor of pinning on his badge, and I held its weight in gold and silver, in awe of all that Josh has persevered to get to this moment. My family and I couldn’t be more proud of him!

In the midst of all the celebrating, I was undergoing and finishing up my last few rounds of radiation. I was recommended to have 10 sessions of radiation to my C5 cervical spine (the area around the back of your neck.) I at first panicked because it was radiation to my C7 cervical spine a couple of years ago resulted in intense shoulder and neck pain for months. It has improved for sure, but still when any medical professional touches my neck, their hands immediately fly into the air as if my shoulders were a hot kettle that burned them. They are always just in shock of how hard my neck and shoulders are; you honestly don’t have to be a medical professional to tell this fact. Today, I still combat this pain with a pain management trio of massage, acupuncture, and medication.

So I write to you now with the 10th radiation treatment completed. It’s tradition to ring the bell after completion of treatment, but this was like my 4th time completing a radiation regiment. Isn’t that bell supposed to signify that I am completely done with radiation, that I will never have to return back here again? In my case, I’ve returned several times. It would almost feel like I’m lying if I rang that bell. It’s not that I’m not hopeful about my health, but when you look back and remember the other 3 bell ringings its hard not to feel conflicted about this bell for me. I don’t want to stain the bell’s brass for other hopeful cancer patients with my unfortunate multiple trips back here.

Now, I thankfully have a little over a week break from all treatment. My body definitely needs a break from radiation and chemotherapy and multiple-day trips to the hospital. Since I’ve had radiation to my neck before, I’m anxiously trying to prepare against the side effects that come afterwards. I follow a yoga YouTube instructor for neck stretches, hoping to prevent pain and the moments providing stress relief as well. I almost always put a neck/shoulder heating pad while I watch tv or read. I massage a salve onto my neck every night before sleeping, praying that I don’t wake up in the middle of the night to have to take any pain medication. I’m trying to be more hydrated in hopes that I can keep my throat and esophagus moist, to relieve any burns that might have occurred on the inside of my throat, drenching the radiation fire with water, Propel, tea, coffee, anything.

I will update again sooner rather than later my friends. Thank you always for reading my updates and faithfully praying for me and asking how I am doing. He is good!