This week, our weekend stopover ended up being the fourth floor of Washington Regional Hospital - not on our top 10 list of places to go for the first day of summer but still necessary.
The journey started with some low platelet levels on Wednesday, then escalated with shortness of breath on Thursday, that we thought might be signs of pneumonia, and continued with a whole day of tests on Friday (X-rays, labs and a CT scan) where we learned that Josh had not just one but several blood clots in his lung. Tricky! And even more so with an extra low platelet level of 27 Ã (normal range is 150-400 Ã).
This all resulted in a not-so-free pass admission to the hospital to receive platelets along with Heparin (blood thinner) through IV. In case you are curious, yes, both of these things are side effects of Temodar and the added treatment of Avastin. While helpful, they do cause some troubles.
Friday night, as I watched platelets drip into Josh’s veins, I realized I knew very little about this process. Where do platelets come from? What do they do? A quick chat with my cool sister-in-law, who now is officially a nurse, brought to light that these come from blood donors through a complicated process. This is also when I learned that platelets only have a shelf life of five days after a donation.
My initial thought was, "So, those platelets were inside someone else’s body five to six days ago?" Crazy, but true. Even the Red Cross confirms it, “Since platelets must be used within 5 days of donation, there is a constant need for platelet donors,”(Red Cross).
I obviously have no idea who donated their blood/platelets earlier this week for this occasion. I know nothing about their story, but in this moment our stories intersect and I am filled with gratitude. It’s in moments like this (and even more dire ones) where I realize how important a selfless blood donation can be – and what an amazing process it is. [So quick reminder – be a blood donor! It makes a difference!] #giveblood #savinglives]
As we continue to rest in the hospital for another day, to ensure the meds (now in pill form) are working on the blood clots and that Josh is staying stable, I find myself looking forward and backward. Tomorrow, we begin our last week of radiation therapy with only four more treatments to go. It will be nice to see the daily routine behind us.
Looking back over the past couple days, I can more easily process the stress and even fear I have felt at times. It is hard to not let fear creep in when you hear about blood clots in the lung or levels of things that are way outside the range of normal. A few weeks ago I picked up a humorous journal to record things that might be “freaking me out.” Each day, I can list the date, rate my freak-out level and glance at the gentle quotes and reminders about how to not freak out so much. Yesterday’s quote was the perfect reminder to keep moving forward. “There nothing wrong with fear; the only mistake is to let it stop you in your tracks,” (Twyla Tharp, p 32).
// // // // // // // // // // But stopping often seems easier // // // // // // // // // //
It’s easy to get derailed by the "what ifs" and worries while trying to figure out the best decision. Fear can easily take over and cause you to freeze in your tracks. But God is good. And gentle reminders like this, along with encouragement from many people help me find my tracks again.
There’s comfort in knowing that I’m not the only one who keeps getting off track. I guess that’s why similar reminders appear over and over in God's Word.
From Deuteronomy 31:6 . . .
Be strong and of good courage, do not fear nor be afraid of them; for the Lord your God, He is the One who goes with you. He will not leave you nor forsake you.” (NKJV)
To Joshua 1:9 . . .
Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go.” (NKJV)
To Psalm 56:3-4 . . .
Whenever I am afraid, I will trust in You.
In God (I will praise His word),
In God I have put my trust;
I will not fear.
What can flesh do to me? (NKJV)
This weekend, Josh and I had a mini-adventure to Beaver Lake about 45 minutes from our house. As we headed out, I thought I had picked a place that would make for an easy picnic stop. I even looked at several pictures online to ensure the best spot. Our stop showed a roadside pull off, picnic tables, bathrooms and everything we needed.
Soooo easy . . .
We made our way down the steep and windy Arkansas highways (of US 62 and AR-187) surrounded by the greenest of trees. In the gaps, we caught glimpses of the expansive Ozark mountains. It wasn't long before we arrived at our destination. The GPS said, slight left. I made more of a turn but kept following the directions until we heard, "You've arrived." There was just one concern. This place did not look like the photos I had pulled up. It was more more like a canoe drop off point than a picnic area. We could see the back of Beaver Dam, there was lots of parking and a bathroom but no picnic tables in view.
Not quite what I had planned.
Of course, after our drive, Josh was eager to get out of the car. He quickly decided to get out of the car and begin a treacherous walk down 10 or more steps, then down a slanted road to the water side. Now this sounds like it isn’t that complicated, but right now Josh isn't very steady on his feet – there’s a lot of literal hand-holding. I was slightly panicking as he kept walking ahead of me. Luckily, he's easy to catch. I rushed ahead to find a place for our picnic. The only option was a large rock next to the water that was better than sitting on the ground. We made it work for our brief picnic lunch.
The scene was beautiful as the very cold water (from the bottom of Beaver Lake) flowed by. The birds sang out and a few fishing boats passed by. We snacked on our turkey sandwiches and enjoyed the serenity of it all. The water somehow drifted up and tried to cover Josh's shoes and we had to awkwardly shuffle a couple times to stay dry.
Our "rock picnic" was definitely off the "easy" plan but perfect ever still.
Our adventure ended with a sudden bathroom need. Josh once again took off walking back up the tricky steps to the not so nice bathroom (stinky, non-flushing, very camping-like toilets). The only benefit was there weren't a lot of people waiting to use it before or after us, so we'll count that as win - ha!
As I stood outside the bathroom, I thought, this definitely has turned into a crazy adventure and I wasn't even trying to make it one!!
On our way back home, I decided to "just see" what was around the corner, since I was still confused on where those picnic tables were. We "veered left" and sure enough, less than a half mile from where we stopped was the actual picnic area posted in all those Google Maps photos. Fully equipped with easy in-and-out access, full-sized picnic tables and a complete lack of risky terrain. I laughed. Of course, we had started with the more complicated option.
It often seems on our life adventures, Josh and I end up on the not so expected or easy path. Saturday's trip was another example of this – even when I was trying to keep it simple. Since we had found the right location, we decided to stop and enjoy the lake view (at an actual picnic table). Sitting there, I again laughed at myself and said to Josh, “Guess this would have been a lot easier than trying to sit on that rock and eat, huh?" He grinned at me and I continued. "But we're not so good at taking the easy way are we?" He answered back, "No we're not."
We both just grinned at each other.
I often look at our story and think, "Wow, this is complex." There are many times when I wish things were much easier. Yet at the same time, I love that God has flavored our story with so many different elements and experiences. It is incredible to see just how God has weaved our lives together in unique ways.
I think in life, it is often hard to really pull back and see the beauty and creativity that God is putting into each of our lives. That even when we feel like we are on plan, we might not be, or when feel like we've hit a major detour, it's exactly where God wants us to be.
This weekend was a reminder that God is with us, even in the complicated detours or sidebars. He's with us at the smooth picnic table, on the super awkward rock halfway in the water, and even in the stinky "dam" bathroom.
(Warning slightly depressing, feeling post)
After a casual evening of hanging with friends, enjoying dinner and time on the back porch. I now am sitting here, attempting to write, instead of doing more Google searches of GBM – the worst brain cancer option for someone.
Josh is asleep after a busy day. He went to bed exhausted. But really, he is exhausted most of the time right now. We just finished our fourth week of radiation and chemo pills. His doctor said it is normal to feel like this (really, really tired) 18-20 days in to treatment.
I keep searching and re-searching the internet hoping for a different answer to my question. More specifically, that question right now is, “how long can someone survive with GBM if they don’t have surgery?” According to many sites, it’s not long, typically. In an exceptional case, someone with GBM might see five years but on average, 12-15 months. I know sharing this news is just all-around depressing. But it is what I’ve been seeing over and over.
People say you should never "Google" your symptoms because you’ll have the worst of whatever you think. In this case, we actually have the worst, so that’s tricky.
As I sit here in our quiet house, I can’t help but wonder about the future. It is possible the data I've found online is true and is what's in store. It’s also very possible that God is working a miracle right at this moment to zap Josh's tumor – to give us a story that is beyond comprehension. As I try to hope in the second option, I still have trouble believing that is the story we might tell. Some might say, this is the crack in my hope. If I just believe hard enough, pray more specifically or really trust that God will heal – the story could be different. Others will just read this, and say extra prayer for my peace, strength, etc (thank you).
Truth is, I don’t want to face the reality that Josh could not be here with me in the future – no matter when that is. But yet I wonder if some part of me needs to consider the possibility? (Maybe. Maybe not.)
It's human nature to want to fight for survival – our own or even someone else. This makes it hard at times to truly "let go and let God," even if we can't change anything.
So how do I make the most of this day, even if I hate it and what it might mean for later? I say goodnight, hop in bed with my husband and watch him sleep for a few more midnight moments. I lift up another prayer and cry out to God. In the same way I have many times. I think back through the day (and week) reflecting on the many times I've helped Josh navigate challenging and confusing moments and trust that in the same way God is with me (and us) -- guiding, helping and protecting us in these same moments.
God is our refuge and strength, an ever-present help in trouble. – Psalm 46:1
What do you do when you realize that chemotherapy meds and radiation is now taking your hair? Throw a hair shaving party, of course. Okay, maybe not in every circumstance is a hair shaving party the best way to go, but for us, this weekend, it was how we made the best out of a not so great situation.
The hair loss began happening quickly. On Monday a few hairs, Tuesday lots more. By the end of the day Tuesday, I asked Josh if he was losing a lot of hair, his answer, “Yes, tons.” As we headed to bed that night, he said he was going to shave his head. I asked if he wanted to go to the barber or have some friends come over and take turns shaving it. He opted for that option. So that’s what we did.
We gathered some dear friends and family, and particularly guys because I really don’t know what I am doing when it comes to shaving heads, and made the most of it. Of course, along the way we laughed a bit offering up options of mullets, hipster-haircuts, Mohawks, etc., before settling with the classic complete shave.
While the night was enjoyable and made better with a company of family and friends, that we’ve known for many years and hairstyles, there was still a bit of sadness in it too. You see, I really love (and have loved) Josh’s crazy hair especially when it’s long and unruly and he looks a bit like a hockey player. It’s just part of Josh being Josh. He would try to brush it in the morning but it would be a mess soon after.
Of course, a haircut doesn’t change who Josh is, but it is does in many ways amplify that understanding that “Yep, we’re in a cancer battle.” We are not only in it; we’re right in the middle of it, continuing the daily routine of pills and radiation for a least two more weeks.
Being in the middle can be tough, as it seems like you can see everything spinning around you so quickly, but time itself moves slowly from this viewpoint. The song “Hurricane” from the musical “Hamilton” comes to mind. Often it feels like we are right in the eye of the hurricane emotionally and physically. While we are making the most of the days, we aren’t taking fun trips to the beach or other locations this summer. We’re just trying to stay still. Honestly, we don’t go too far from home. When we do, the trips or adventures are short and require one or two days of rest and recovery.
So, what do you do when you feel like you are stuck in the middle? For me, I strive to see the beauty. The moments that wouldn’t happen otherwise. I take a mental (and sometimes actual) snapshot of friends helping shave Josh’s head, hang out and celebrate with friends who joined in from a distance in a head shave too. I kiss my husband’s newly bald head because today I can. We shop for hats because we might need more hats in a color other than Royal blue (#goroyals). I take a few more deep breaths.
And when I can’t think of any more positive things, I simply lift my eyes up and remember God is with us.
1 I lift up my eyes to the mountains— where does my help come from?
2 My help comes from the Lord, the Maker of heaven and earth.
3 He will not let your foot slip — he who watches over you will not slumber;
4 indeed, he who watches over Israel will neither slumber nor sleep.
5 The Lord watches over you— the Lord is your shade at your right hand;
6 the sun will not harm you by day, nor the moon by night.
7 The Lord will keep you from all harm— he will watch over your life;
8 the Lord will watch over your coming and going both now and forevermore.
Have you ever tried to hold a wriggling fish? Straight out of the water? Maybe it’s a bit slimy making it all the more slippery. That’s how life feels right now as I try with all my might to hang on to this thing called HOPE.
Holding on to hope is necessary but often is so very hard – and even more so when you've been disappointed in the past. Often, I feel like the very word is slipping right through my fingers.
At the two-week mark of treatments, I had hoped to see more of a difference. To more clearly see signs that the chemo pills, radiation treatments and meds are working, but unfortunately it’s not that simple or obvious. Of course, Josh does not seem any worse, and is about the same. He is tired, he still doesn’t talk much and is weak on his right side – which is especially noticeable when he walks or holds something. His memory is still cloudy and he isn't good at responding to calls or texts.
As I sit here today striving to hold onto a hope that is bigger than me, I reflect on Romans 5:5 which states, “and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.” Even in following the verse back (to vs 3), it is even harder to “exult” in this particular challenge. It’s hard for me, for Josh and for so many of you. Nevertheless, I still wrote verse 5 on our blackboard wall as a reminder.
Focusing on HOPE means taking things day by day and remembering to enjoy each moment. As I start the day, I try to remember that if all we do is watch old episodes of our favorite shows and nap, that's great. If we have a chance to enjoy a dinner out or a picnic at a local state park, amazing. Whatever the today brings, we embrace it. It's a good day.
In the middle of these good and hard moments, I trust that God is shaping us in new ways. Not every moment is great and I might be disappointed at times but what I’m beginning to understand more and more is that having hope and being disappointed can still happen at the same time.
This is possible because Christ-centered hope is about much more than my daily circumstances. I can be disappointed and still have hope. This hope is about more than fighting cancer and brain tumors or figuring out what's next. It is a hope that outlast each season and circumstance.
This HOPE is the net that makes it possible to hold that slimy, gross fish at all.
"How do you pick up the threads of an old life? How do you go on, when in your heart, you begin to understand, there is no going back?"
I know a bit dramatic, right? For those who don’t already know, this is a quote from Frodo at the end of the Lord of the Rings series “Return of the King.” We love this trilogy and watch the extended cut versions of each movie every Christmas. We’ve been doing this since the first movie came out in December 2001.
The line above has been wafting through my mind this week when trying to "return to normal" which is not really possible. So instead we enter a new season of normal. Some things are comfortable and familiar like our home and own bed, instead of a hotel or hospital room. For me (Jenn), it means returning to work and music classes – but still wondering how Josh is feeling when I am away from him. For Josh, this means resting a lot more and continuing a daily schedule of daily radiation therapy, chemotherapy pills along with other meds and doctor appointments as needed. It's relying on a lot of friends and family to help us out in new ways. And all of us trying to trust the process and God when we don't always feel like it.
To be honest, it all feels a bit fragile and subject to change at a moment’s notice. The treatments are not too hard on Josh and he feels okay most days but still very tired. What you don’t see behind the smiling photos is how hard Josh is working to do the basics. I could write a whole other post introducing “Josh, my husband with a brain tumor” and what this looks like to the outside world – I probably actually will (soon).
We’re hoping and praying that a lot what was “normal” for Josh will return. My biggest hope and prayer is that Josh can both think and communicate more clearly and that he will find hope and peace in the midst of treatment.
As we navigate all of this, we ask for your continued prayers, grace and patience as we walk day by day in this "new normal" that we find ourselves in.
I am still so thankful today and the wisdom and strength that God provides. It is in HIS strength that we continue day by day.
If you are curious, Josh is doing basically a minute of radiation therapy every day, Mon. - Fri., along with a good dose of Temador (chemo pill), steroids and a new medicine called Avastin to help with swelling.
We had a good week as I celebrated my graduation, we spent time with friends and family and even celebrated my cousin Adam's graduation and soon send off to Army boot camp. There were tiny moments when things felt pretty normal and even even joyful. We love our friends and family!
How I wish you all could have spent several hours with us driving the backcountry roads of Iowa. I know it doesn’t sound that glamorous but in so many ways it was. As we drove mostly backroads listening to music and counting red-winged blackbirds, we soaked in the “what’s next.” (View our travel map.)
The “what’s next” is happening quickly, actually today.
The prescribed treatment for this type of brain cancer is six weeks of radiation concurrent with taking a chemo pill. The hope is that the radiation will work to control or shrink the tumor. This is definitely the hope and our biggest prayer. This treatment plan is the same one we had in mind when we headed to Mayo. Of course, we wanted to see about additional options and wanted a second opinion on surgery.
We met with the clinics’ top neurosurgeon who kindly advised against surgery as it could cause more significant problems for Josh all around. The location of the tumor really presents a big challenge because of its depth. Even though I knew this, it still was hard to hear and quite disappointing. Yet at the same time, we don’t want to take that kind of risk. Instead, we move forward with what we can.
We did find great hope and wisdom during our appointment with the brain oncologist. He offered additional advice for radiation treatment. There are many complicated factors with Josh’s tumor, including finding a way to not make things worse physically and mentally in the process of treatment. Radiation can help but can also cause additional swelling which makes things worse. This is where our Mayo doctor provided the most wisdom and guidance as we move forward with a few more resources.
Even though a visit to Mayo did not mean provide a lot of quick solutions, they did confirm we are on the right path. Our doctors there also are continuing to study the DNA of the tumor to better understand it and guide us forward. Our doctor described our “what’s next” much like a destination stop on a cruise ship. Stop 1 is radiation. We’ll hop off here and explore it completely and see what happens. Once we know what happens, we’ll move on to the next stop.
Believe me, I’d much rather be on a real cruise -- Mediterranean cruise, anyone?
I’ve said it before, but I will again. This is tough stuff. And it’s layered with questions, frustration, sorrow, doubt and more. It's also mixed with prayer, friendship, family, community and of course, hope.
There is hope because God is writing a story of hope in each of us. It can be found even in the middle of the stupid stuff like cancer tumors. It can be found in the moments I hear Josh singing laughing at me and when we look at non-so great waterfalls in Iowa.
At times the hope might be hard to see, but it’s there. We believe and trust in a God who is good and with us in the hills and valleys.
Thank you again for joining us on this journey and for your continued prayers and support in many ways.
Reporting live from Des Moines Iowa . . . Jenn Brown. Okay, so maybe not live by the time you read this but that's what popped in my mind as I began to share today's update.
While taking a trip to a cancer specialist on Mother's Day weekend is quite a heavy thing to process, having time on the road to think and just breath has been good. Not easy, but still good. Here are some of the bright spots:
• Starting the day with coffee with Josh's mom on Mother's Day. (Love you Kim!)
• Finding 48 cents by our upgraded rental car
• Hearing Josh sing along with some of our favorite tunes on the road (He's not talking much so hearing him sing is really encouraging).
• Eating KC BBQ with Josh, then finding $5 in the parking lot! (We're up $5.48 for the day!)
• Smooth travels and good weather all around with only 3 hours to go tomorrow.
While this might seem a bit too optimistic, it's still nice to find the bits of hope and joy in the midst of such chaos. Even in this joy, anticipation builds with each mile we drive. It's tough to see how the tumor is impacting Josh's communication skills and just how hard he's working to do the basics. It's hard not to think about what could happen in the future.
As we (and mostly me) prepare for our time at Mayo, we ask that you continue to pray for wisdom for us to know the best questions to ask while we are there.
Pray also for Josh's physical strength and for the clarity of his mind.
Pray for courage and strength as I navigate many different pieces and parts of this journey.
We continue to trust in our God who is able to do immeasurably more than we think or imagine.
The past week has been a whirlwind of activity as we continue processing literally everything. We are fortunate to have received a quick referral to the Mayo Clinic in Rochester, Minnesota. We check in and begin conversations on Monday, May 13 at 4 p.m. and have a couple days of meetings with experts including a brain oncologist. When I was asking the schedule and they casually threw out, "in the morning you'll meet with a brain oncologist," I thought. "Wow, that sounds super important" -- which of course it is for a slew of reasons.
There is comfort and hope in seeking a second opinion from a place that is known for dealing with tough issues. Of course, I'm nervous about it because it is a new venture and there is a whole lot to learn and discover on this particular trip.
As we go, we know so many of you are praying for us. Thank you. We ask for your continued prayers as we travel. Pray that we will know what questions to ask these amazing doctors and specialists and what steps to pursue.
As many of you know, Josh and I have had lots of road trips. We love the adventure of getting in a car and driving. There is so much joy and peacefulness we find in loading up a good audiobook (currently the Harry Potter series) or singing out our finest rendition of the Hamilton Soundtrack on highways across America. Being on the road again is a nice feeling.
This trip will be just a Josh and Jenn road trip but to a destination that we have not yet had to encounter. We take off Sunday driving. Don't worry, we have lots of family and friends on stand by to rescue us if it gets dicey, but we are looking forward to the time together, even if the end destination means continuing to talk about the not-so fun reality of brain cancer.
Stay tuned for road trip and Mayo Clinic updates and again thanks for your amazing, beautiful, humbling support.
When your world is spinning all around, you tend to seek out normal things to do. Things that you (or I) may have mindlessly done many times over just because. Things like scrolling social media, finding cute new things to wear, buying toilet paper, more unnecessary candles, another cup of coffee from a local favorite shop or some Chick-fil-A.
As I do these things, I often stop for a moment and think, “Why am I doing this?”
The answer: Because, for one moment, maybe even 10 seconds, I want everything to return to normal. To pretend my husband doesn’t have a significant tumor in his brain and that our world has not just flipped upside down.
Of course, in the flip there is beauty found in so many amazing conversations, along with acts of kindness and encouragement in every way possible. While I don’t for any reason want to appear ungrateful, I still wish this good could appear in a different way. I suspect several of you might feel the same way.
Can we just go back to a month ago when we were planning a summer trip; six months ago, as we figured out when to have the Christmas get together? Or a year ago, as we went to a fun concert, maybe even __ years ago when we went on that epic trip, etc., — the list goes on.
Within this paradigm, I think it’s pretty normal to wish and hope for something different. Even in the midst of this “crazy,” I am reminded to stay in the moment and to keep trusting God with what is next - believing that whatever is to come is still filled with goodness.
Is it hard to really do this? Do I have my doubts? Yes, of course. But I am trying. And holding tight.
We’ve got this friends! Because we have each other and God by our side. As we sit here, let’s keep celebrating the good we have seen.
Friends & Family
We have been so encouraged by friends and family. Thank you for the practical ways you are caring for us! We love you all! This is just few photo highlights of some meaningful moments.
Some people have ask how they can contribute to these medical cost. This link is below.
Currently Josh is a pastor at Fellowship Bible in Rogers serving the Springdale community. He has actually had cancer already three times with the first to being non-Hodgkins lymphoma at ages 15 and 25 and the third thyroid cancer last year. Cancer has been a long part of his story and is always seeming to cause trouble and more trust.