I’ve learned that grief doesn’t end just because things have gotten better. I feel like we were hit with a tsunami. The huge wave knocked us over and held us under for awhile. Once we caught our breath, we sat in the mucky mud figuring out what the hell just happened. And now we’re in this weird rebuilding stage. Taking the pieces of our old life and figuring out how to put them back together.

And I feel like maybe I’m being dramatic. I mean we got knocked down but we survived. We got a cancer diagnosis, but Ryan’s okay for now. Things are fine right? He’s running and working and playing soccer and snowboarding; and in 2 short weeks he will be driving again. So is anything really that different than before?

But it is. “Cancer changes everything and nothing at all.” I heard that on TV recently and it really stuck with me. On the outside nothing has really changed. We have a few more prescriptions in our house and we see the doctor way more than we used to but life keeps going. But on the inside? Oh boy. Yeah. Everything has changed, and I don’t know how to function in this new normal.

My new normal, though it looks the same to most, is full of anxiety and fear. It’s full of constantly worrying. My new normal is feeling like I have to hold it together, like I am everything to everyone and everything will crumble if I stop. And it’s exhausting, and I’m tired.

I remember longing for this when we were in the thick of it. I remember just wanting to be normal, to go back to when everything was okay. To a time before we knew bout the cancer because that life was easy. And this new life? This life is hard. And I feel like such a whiner because we are back to normal and things are good.

I need to give myself grace. I don’t have to be okay and I don’t have to be strong. It’s only been 6 months since our world turned upside down. I’m allowed to be mad and angry and upset and confused and scared. And I’m allowed to fall apart. But I’m also allowed to be happy and hopeful and find joy. But most of the time right now if I’m being honest, I’m scared and angry and sad. And that’s okay. Because I’m still figuring it out. I’m still learning who I became through all of this. I’m still learning the person I want to be now.

We are in transition and we’re rebuilding and it is hard and painful and exciting and full of hope and scary and hard all at the same time. And that’s exciting but also so so scary, and that’s okay.

*quote was from NBC’s New Amsterdam*

I feel like a tree. Like I was a mighty oak growing tall and strong in the summer sun.

And then my husband got cancer and I was shaken to my core. And the bitter winds and rain came, and stripped me of everything. And my leaves blew around me in a chaotic dance and settled at my feet. Who I was and what I knew died.

It is winter now, and even after the fall rains, I still stand tall. I’m more transparent now, but I am still standing. Winter brings a pause. A chance to reflect. A time of peace and calm. I am able to see my fallen leaves and know that I will be okay, that the fall was not the end.

I am so thankful for this pause. I need this time to process everything that is my life. It has only been 4 months. It has already been 4 months. Simultaneously fast and slow. Everything is different, as it slowly tries to creep back to the same.

And I can feel in this time of rest, that there is warmth around the corner. There is hope for tomorrow, that with the spring, comes rebirth and life.

We are breathing deeply as we rest and recover from our intense 6 weeks of daily treatments. Everything has been moving so quickly that it is crazy to think that it was only 3 months ago that this all began. That it has only been 3 months since our world shattered. I feel like it is only now that we have been able to begin piecing our life back together. It is in the stillness and rest that we are healing. Now that things have slowed down we are able to step back and really consider how we want this journey to shape us. What is it that the Lord has in store for us?

I know that I don’t want to come out on the other side of this unchanged. In the beginning I would have given anything to go back to “how it was” but now that life of complacency and ease has no allure. I must be changed through this otherwise, what was the point? What is the point? I have been changed through this. I would be naive to say otherwise. I am not the same person I was when I went to bed on July 13.

I don’t really know what I am trying to say other than I am so thankful to God for walking through this with us. As angry as I have been, I have never doubted His presence with us. I have never felt abandoned or forgotten. I am thankful for grace.

I am thankful that we are being given the chance to shape our new normal. That we get to have family car rides in the morning that are filled with prayer and expectation for our days. That Harlow will grow up knowing her daddy is a superhero who has slayed dragons. I am thankful that we can slow down and process. Even though the slow brings emotions I thought long dealt with bubbling back to the surface. I am thankful for the normal.

And there will be feelings that are hard to shape into phrases and there will be memories that are difficult and weighted, and there will always be grace, rushing through you all the more… reminding you that EVEN HERE there is still much more in store. – Morgan Harper Nichols

Treatment Updates

Since it is been a while since we have updated everyone on my progress, this post is to share some updates on my first round of radiation & chemo as well as share a few pictures.

Day to Day

Today was my 13th day(of 30) of Radiation treatments, and most days I feel great! Treatments are all done Spectrum, about 10 minutes from our house. In addition to radiology, I am also taking chemotherapy medicine each morning. Radiology appointments are Mon. – Fri, while the Chemo and nausea pills I take are required 7 days a week.

A typical morning for us right now involves me waking up at 6:00 to take anti-seizure medications, then making breakfast, taking nausea medications (to battle the chemo pill side effects), followed by the chemo pill, and finally Bri driving me down to Spectrum for my 15-30 minute appointment. We usually try to bring Harlow to daycare in the morning as well, however she currently has hand-foot-mouth disease, which has been going around- so we are waiting for that to clear up.  

Once we get to Spectrum, our Radiation appointments are fairly quick. Typically I am on the table for around 10-15 minutes, but today I think it was closer to 7 or 8 minutes, my shortest “brain beaming” by far! The radiologists look at a CAT scan of my brain while I am on/under the machine and can point the radiation beams and levels to specific locations.

Once per week we also meet with our Radiologist Doctor who checks in on my progress, asks how I am feeling, and is an all around great doc. I also get my blood drawn and meet with my Oncologist nurse as well. The blood tests are done weekly to ensure that my red and white blood cells and platelets(?) are up and that I am healthy. Basically, if any of my counts or “levels” get low, then I can be at higher risk to get sick, and would need to take extra precautions, especially around public places such as daycare or grocery stores. So far after my first 2 blood tests, I received positive results back which means I am healthy enough to continue treatments!

Side effects

The side effects of radiation and chemotherapy pills can vary greatly from patient to patient. I do feel tired in the afternoons mostly, so take naps when I am able. To date, my headaches have been minimal and I haven’t had any nausea which is a huge blessing. My radiologists did say that this week will be when my hair will get patchy and most likely start falling out at a rapid rate- at least on the front right side of my head, but possibly all over my head. I do not believe that the Temodar (chemo pill) causes hair loss but I could be wrong on that. Honestly, hair loss will be the least of my worries, as it’s finally starting to feel like fall here in MI so I will probably be wearing more beanies so I don’t scare the kids with my frankenstein-like scar!

Physical Activity

Another thing I’m excited about is I am finally feeling stronger and like I may be able to start working out or playing tennis. I am going to ask my oncologist soon if I can start doing some short runs if I’m feeling up to it. Since my last seizure was on August 5th, I am now comfortable to be left alone and start doing more without assistance or Bri having to worry about me.

Radiology Treatment Specifics

The week before my treatments started on Aug. 23rd, they also inked/tattooed a small dot on my sternum which helps the radiologists line me up straight on the table so that the radiation beams are aimed as accurately as possible I am told that the old tumor location is where radiation is primarily beamed towards, with a 3 millimeter spillover allowance so that meandering cancer/Glioma cells can also be treated/killed to slow future growth. Each appointment is quick, and I don’t feel anything in regards to my brain hurting, feeling weird or anything like that. By the time the 10 or so minutes is up I think I could asleep already if I weren’t so intrigued with the bed moving, and the machine doing it’s thing. Praise God I am not claustrophobic also, because they do strap the mask down very tightly around your face, and I have heard it isn’t so pleasant for everyone and causes a lot of anxiety for some.

Pictures

Below are some pictures showing the white mask that was custom moulded to the shape of my face a week prior to treatment starting. There are also pictures showing red lasers pointing at me from different points and angles in the room. Those are there to line me up with the facemask and crosshairs drawn onto it, as well as my chest dot, ensuring I am straight on the table and radiation can be as accurate as possible.

We are so grateful for everyone who keeps up with our story, continues praying for my treatment and those who have helped us around the house, brought meals,the list goes on..We excited to get through this first round of treatment which will be finished by October 5th Lord willing.

Best,

Ryan

“We either feed our fear or we feed our faith.”

Christine Caine

We’ve managed to stay out of the hospital for 2+ weeks now, which is the longest we’ve gone since this whole thing began.We are starting to get into a routine with our days. Get up, take Harlow to daycare, go to radiation, and after that the world is our oyster. By the grace of God, Ryan has been tolerating his treatments very well with minimal side effects. He sometimes experiences headaches, or fatigue in the afternoons/evenings but that has been the extent of it to date. Our radiologists say that in the next few days is when more side effects from radiation typically kick in, as we are close to 2 weeks into treatment now.

We were able to get away last weekend and spend some time with family up north which was so good for the soul. After overdoing it right after surgery, we have been playing it extra safe so it was really nice to see Ryan being active and in his element.

It is weird to say that we are getting back to normal… I mean is that even a thing anymore? But we are definitely getting into a routine and coming to terms with our new “normal”. It is still a daily roller coaster of emotions. Some days are good, and then there are still days where I don’t believe this is real life. Seriously?! Is this real life???

I wrestle daily with the Lord. My head still cannot reconcile that this is happening and that God has a plan. But at the same time, I cannot (and do not) accept that there isn’t. This cannot be for nothing. Ryan and I have had so many conversations about why this has happened to us; what God is doing with this. We’ve concluded that even if the only thing that changes through this experience is our relationship with each other and our relationship with the Lord, that will be enough.

We are experiencing a refining fire, and we will come out better for it. We are trusting in our God who does Big BIG things, and taking notice of the innumerable ways he has shown up for us, both in the tiniest seemingly insignificant ways, as well as the big ways that seem too coincidental to happen otherwise. 

Thank you for continuing to walk with us, to pray for us, and to lift us up. We love you all.

Waves

Why did this happen to me, and why now? I am only 27, play sports, stay active and **try** to eat healthy. Sometimes I feel so overwhelmed by my current state that I’m not sure whether it’s more helpful to pray, cry or hold my wife’s hand and trust that tomorrow will be better. One day, life feels somewhat normal or “easier” and I am feeling well emotionally, then the next day I’ll be sad.

I think it goes in cycles- similar to waves crashing on the beach. On Lake Michigan there are calm days where you can Stand Up Paddle board, take a leisurely swim or wakeboard on glass-like water (a rare experience unless you enjoy jumping in very cold water). Then a storm can come out of nowhere, the wind whips up and the waves crash and churn violently. Some people even jump into these whitecap waves in thick wetsuits to catch a choppy, yet still surf-able Michigan wave. Just last week, t waves were measuring eight feet- certainly something I wouldn’t jump into- wetsuit or not.

I think about the brain, how complex it is and how much activity there is going on all the time. In my case, I was hooked up to an EEG machine so that techs, doctors and epileptologists could monitor my frontal lobe (and entire brain likely) to see the “spikes” in activity. Some I had were focal seizures, meaning I would twitch, glaze over and was paranoid about certain things; some were subclinical seizures (not noticeable to me or others), and others were labeled as abnormal brain activity.

While tethered to the machine, I imagine the doctors looking at the monitors/screens, and wondering if I was going to seize again or if I needed different medication dosages. I also wonder whether the spikes on their screens were common, concerning, or if there was improvement (basically I just wanted to go home, outside, or get out of bed at this point).

If there is one thing I have learned this summer it is that God’s grace is unending. It is deeper than I can fathom. I must also experience my own weakness in full before I’ll understand the depth of God’s grace for me. It is for these truths that I am so thankful. I know that no matter what I do, how much I fail or how weak I become, Jesus will always be standing at the shore, His arms open wide, welcoming me back into His grasp. All I need to do is swim to shore.

Love you all, appreciate your prayers, and thank you for reading.

Ryan

Psalm 89:9

You rule over the surging sea: when its waves mount up, you still them.

I am constantly conflicted. How can you be thankful for an experience like this? I KNOW this is for the greater Glory, and that we are Kingdom Building through our testimony but I’m still struggling to accept that this is actually our story. I want it and I don’t all at the same time. Does this make any sense at all?

Apparently it takes being brought to my knees to learn that these aren’t my legs to stand on anyways. God is pulling me towards Himself, towards who I was created to be. But I am so angry about it. I didn’t ask for this lesson. I know that in the long run I will be better because of this but I still find myself asking why. In my heart I know that this is good, but my brain is still catching up.

I can fully recognize that God is bringing me to the end of myself so I can collapse into His arms, but still I fight it. I still don’t want it. Why isn’t it enough for me to know that God is changing me? Why is “easy” what I want? Life before this was easy. It was routine and predictable and safe. And sometimes all I want is to feel safe again. But it was also selfish, lazy and complacent; just going through the motions.

I feel like one of the blessings of this experience is getting a glimpse at specific attributes of who God is. Specifically, I am learning about His humility. I think I am learning what it is to be truly humbled (am I being the opposite by saying that though?)  I didn’t realize my struggle with pride until people started offering to help us. Why is it our first instinct to refuse help? Why do I think I need to show everyone how much I can handle on my own? That’s the beauty of this though. I could likely do this on my own but I don’t have to. And this was the tipping point for me. I don’t have to do this alone.

I have never been a very strong writer… so bear with me here. I will start with some emotions/words that have come to mind over the past month which I have felt sink into my heart. God’s provision, blessing, watchfulness, love, care, grace, steadfastness, mercy, and the body of Christ surrounding my family so closely are some that come to my mind and heart. We are so so thankful for such a great tribe of family, friends, work community(Kent ISD and Chaco/WWW), and neighbors pulling for us with physical, emotional, and prayerful support through this time. We have meals coming regularly, daycare for our daughter, even family mowing our lawn!
As for updates on where I am at physically and emotionally, there are many details below -maybe too many- but if you are interested then please read along.
On July 14th, soon after going to sleep I had a generalized (full body) seizure. My wife Bri noticed something wasn’t right and if she hadn’t had a minor obsession with Grey’s Anatomy she may not have had the knowledge of how to save my life that night. Because of God’s grace, Bri was able to contact 911, which had emergency services to our house in less than 10 minutes.
I woke up confused in the ambulance sometime around 2 a.m. and remember most everything past that. I was asked repeatedly my name, birth date and the current president, to which I answered “George Washington” 3 times. Eventually they told me it was someone you’d never expect, to which I said Donald Trump in less than a second I think!
The first thing I remember after getting to the E.R. was being rolled in and wired up to check if I had a stroke or a heart attack. Once I passed those tests, they brought me into a room for a CAT scan, which is where they noticed I had a brain tumor in my right frontal lobe.
I was then admitted to a room where my Neuro-P.A. showed Bri and I the imaging showing a golf-ball sized brain tumor in my head. This was a lot to process, but there was also good news to go along with it.
Our P.A. was very personable and optimistic for me, and introduced us to my neurosurgeon named Paul Mazaris. He looked like he didn’t just graduate med school, but also like he wasn’t going to retire in a year or two and was very kind. He was also humble in saying that he wasn’t sure what caused this tumor, if it originated somewhere else in my body, or what the outcome of surgery might be. I think it takes humility to not make your best guess to try and sound impressive or “sell yourself” as the best surgeon in the area. After all, I did still have the option to research another neuro-surgeon in the area or country should I feel inclined.
From this point I had 4 MRI scans done to give the doctors/surgeon the most accurate information on my tumor and its location in my head. They realized it was very close to the motor skills area which physically controls the left side of my body. Because of this, my surgeon had to be very diligent and cautious, but did well keeping my family updated in the waiting room. I literally cannot say enough good things about every level of care Bri and I have received here at Spectrum Butterworth.
The next steps were very difficult for Bri and I to hear. We were told I have Cancer, will need to be aggressive with radiation and Chemotherapy, and i will be on high dosages of medication for some time. Research shows that this gives me the longest amount of time before the cancer grows back. I also have epilepsy brought on from surgery which means i will be taking medication for 6 months up to the rest of my life, depending on how my brain responds to each drug.
Since surgery I have felt GREAT physically, pretty good emotionally(every day is different) and very thankful that my strength/feeling/etc.are equal on both my left and right side of my body. I don’t deserve any of these favors from the Lord but I know that He had this plan for my life since I was created in the womb. I know He has chosen me as a vessel or platform to shout God’s glory through this storm. One of the most difficult parts is watching my wife Bri have to take care of me like a nurse (which she is happy to do), but I thought maybe this would happen 50 years from now, not this soon.
I guess it is a good thing, because it is softening my heart and teaching me so much about God, friendship, my marriage, the complexities of the brain and a new appreciation for modern medicine. I keep telling Bri that tomorrow was never a given and I could have died in a car crash last night or next week. The best thing to do is keep hope, spread joy, enjoy life and love well.
Love you all,

Ryan

They say it comes in waves. It crashes into you, and you come up sputtering and gasping for air as the next wave bowls you over again. It is relentless and it is hard to breathe. I find myself calling out to the Lord. Why is this happening? Why us? Lord save me from this storm. This is the hardest journey I have ever had to walk, and frankly it sucks.

But it’s been beautiful too. Feeling the body come around us is incredibly humbling. Learning to accept help and set aside my pride. Seeing the way that God is already using this to grow our capacity to know Him and each other, seeing that He is already furthering His kingdom.

And then it’s hard again. I am crying, screaming, and begging God to choose someone else. And I feel my husbands arms encircle me, and his gentle voice telling me that it’s going to be okay. That I am going to be okay. He tells me that we are “sitting in the mud” of our grief and sorrow. And it’s exactly where we need to be because Jesus meets us here.

He sits with us as we mourn the loss of our ignorance. As we come to terms with our mortality. He is sitting with us as we envision our future now filled with appointments and treatments; so different from the dreams we were making on our anniversary just days before this all began. Jesus is mourning with us, because this is not what He wanted for us; this is not what he intended for His children.

So we sit in the mud, tear-stained and broken but in the arms of our Savior.

Just a little something my family made for me today for encouragement!

#GMGRSTRONG #ryansgreymatters