Treatment plan

Brack and I have spent the last two days at appointments at the hospital. On Wednesday, we met with a neuro-oncologist to get more information about the biopsy results and my treatment plan. He was very patient, thorough and explanative. We appreciated his honesty and are ready to move forward with his recommendation. 

I have been diagnosed with a high-grade malignant glioblastoma. The tumor is not operable and treatment will happen to shrink it as much as possible to minimize symptoms. The plan is for me to begin treatment 4 weeks post-surgery, which will be about two weeks from now. I will go to The Dalles (45 min from Parkdale) 5 days each week for 6 weeks for radiation. I will also take chemotherapy in pill form (called Temodar) at home each day for those 6 weeks. We also discussed side effects, which will be manageable, and weekly blood draws to check my levels. After the 6 weeks of treatment, I will have a break, another scan and check the progress.

Today, I had a thyroid biopsy and a CT scan of my abdomen to check two other spots found on the spinal MRI. I have been told the tumor in my brain is a primary brain tumor and likely began there and will not travel elsewhere in my body. If pathology on my thyroid shows something, it will be a separate issue. I should know more about today's tests early next week. 

The next step is a consultation in The Dalles next Tuesday to discuss radiation treatment. I hope to get a starting date while I'm there. Brack should be able to get me to and from appointments for about two weeks before he has to go back to work. Thankfully, it should be much easier for me to get a ride to The Dalles instead of Portland each day. We are celebrating small victories!

Another worthy celebration will be my mom bringing my kids home next Wednesday. We are so ready to squeeze them. They have a new room and playroom to explore. I'm so ready for those sweet faces to be in our home again. 

Thanks again for all the well wishes, prayers, and encouragement. Our family is grateful. 

-Jordan

Our favorite local spot, Solera, at sunset

Wheelchair riding through Target

Making myself comfortable at the hospital today. These socks and blanket are now part of the uniform!

Brack has worked hard to finish our DIY bedroom. Headboard! Dresser! Table!

Finally got my rings resized and am starting to feel normal again

How We Wait

Obligatory warning that this is a post by Brack.

While we were getting ready to leave the hospital after Jordan's procedures, we had some friends visiting with us. One of those friends shared something that has really stuck with us the last ten days or so. His prayer for us is that we would have a deep appreciation for the life we have around us. Also that this would be a time where our family could see the beauty of life.

Little did he know this has been an undercurrent in our family that has slowly been changing us over the last several years. We feel that sense of deep appreciation when we are fully present in the moment. Something especially hard for me because my mind is always thinking ahead. Constantly trying to feel out the future. The last several years have been spent in rebellion to that though. A little community in LaGrange, GA taught us so much about being present and valuing what is right in front of us.

This was a great reminder from our friend because in crisis we have found it is much easier to slip back into autopilot mode. So easy to forget about the present and worry so much about the future. That little reminder though has helped us to acknowledge those very real feelings we have about the future without letting them rob us of the gift of the present.

So here is how we have been drinking deep from the cup of life since leaving the hospital:

Eating fresh cherry pie that a coworker and student made for us.

Smelling beautiful flowers brought by friends.

Eating our weight in cherries (my fingers are stained). Jordan went blueberry picking with a friend and brought back pounds of some of the best blueberries we have ever had.

Gaining a little bit of weight from eating so well. The meal train is keeping us full and happy.

Quiche, pizza, enchiladas, lasagna and fresh baked goods, oh my!

An impromptu archery lesson at a friend's house.

Lots of back porch time reading and soaking in the sounds of nature.

Boardgames (pretty sure Jordan won).

Wetting our whistle in Portland with friends.

Another IKEA trip. Try the breakfast and buy stock now!

Sneaking up to Inspiration Point for a breathtaking sunset.

Jordan's first haircut in a year!

"Life is Uncertain, Don't Sip!"

This sums up our own hopes pretty well right now. 

My hope for anyone reading this is for you to take a deep drink from the cup of life you have in front of you today.

Cheers!

Brack

Gratitude

Nearly a week after surgery, I am grateful for dozens of seemingly normal things. Each person who has knocked on our door, each card I have received in the mail, each silly GIF or group text, each FaceTime call and each warm meal. It is obvious that we have a mountain of support around us and we're so thankful to see all the GOOD. Thank you, from the bottom of our hearts, for showing up.

I am waiting for a post-op appointment on Thursday (the 27th) and will hopefully learn the results of the biopsy then. While the surgeon did confirm the mass in my brain is, in fact, a tumor, we will know more soon about exactly what we're dealing with and how best to treat it.

In addition, a spinal MRI at the hospital showed a spot on my thyroid and liver. On Thursday I'll also have a CT scan of my liver and a needle aspiration biopsy of my thyroid. Sounds fun, huh? These are minor outpatient procedures to help see if anything else is going on.

In the meantime, Brack and I are truly trying to enjoy our new normal. He's working hard to get our house unpacked and I'm working hard not to fall down. Our world is full of eye patches, sanders, fresh fruit, vitamins, friends, errands and projects. We miss our kids every day, but are so thankful for the extra time they've had with their grandparents. These are the good gifts we think upon often.

Thank you, again, for being a gift to us.
  

Only #12days until I see these sweet faces! 

Much needed treats from friends who know me well!

Lunch at Lake Taco today. Serious gratitude right here!

We are busting out!

Another quick update from Brack.

A nurse woke us up this morning at shift change with the news that we get to go home today. He seemed a little shocked when I started putting Jordan's shoes on and pushing the bed towards the door. Apparently, it doesn't work like that...

I want to take a moment to recognize OHSU as a world class hospital. We are floored at how hard they have worked to make our stay as comfortable and stress-free as possible. All of the nurses we have interacted with have been so professional. They also take the time to just talk about life and not just about the logistics of why we are there. They have had such a gentle touch when working with us. The facilities here are beautiful and state of the art. People literally come hang out at the hospital for the views. The surgeons have been great. They were professional and honest with us. Jordan's surgeon came by early yesterday morning in the ICU just to check in. He did this even though he had shared with me the day before that we wouldn't need to see him again unless Jordan was undergoing another surgery. This experience could have been so much different without the world class staff here.

We are excited to get back to our home. We know the last month has just been one really long and delayed introduction to what is slowly becoming our new reality. There have been some frustrating times waiting and not knowing what is coming. There is still another waiting period that we are being faced with right now. Jordan and I both know that there was a purpose for this last month though.

We believe firmly and have seen it over and over again that the community we have been given in Oregon loves us, cares for us and is 100% exactly what we need for today. Just in the last couple of weeks as we have shared our story with more and more people that tangled web of community has grown tremendously. It includes people of all colors, creeds, shapes and sizes. We have had people from way back when reaching out to us. People literally from the other side of the globe. People that have helped shape us into the couple that we are today and people that we got into all sorts of trouble with growing up (me more so than Jordan on this one).

Interacting with these people has had us laughing and crying so much from all of the incredible memories we share. True friendship and community is not lost with a little distance and time. We are being reminded of that each day and are so thankful!

With all that being said daily life isn't going to be changing for us while we wait for the next step. We are both itching to get back to the gorge. Our home is literally one of the most beautiful places we have ever been right now. The weather is perfect (we have about 16 hours of sunlight a day), everything is green and the most delicious fruit you have ever eaten is literally falling from the sky. We are going to get out for lots of walks, do our normal exploring, spend lots of time in the backyard as the sun goes down and sleep with the windows open! There is no better place to relax and prepare for whatever is next.

One quick funny picture. Our friends brought Jordan a pirate ship pinata and a card with parrots on it to go with her eye patch.

Thanks again for all your support!

Brack

This is a guest post from Brack!

Please forgive any grammatical errors and misspellings. I blame it on sleeping on the ICU floor last night.

Jordan's procedures went well yesterday. Waiting in the hospital and keeping busy was tough. The staff at OHSU did an incredible job of keeping me in the loop though. The surgeon was able to obtain an appropriate amount of tissue for biopsy. He also performed another procedure that will allow her spinal fluid to drain properly.

So now we wait. The biopsy results could take a week. So we hold out with patience and peace.

Fun fact about surgery! Long before they start a doctor comes in, verifies your identity and marks the correct part/side of your body that is being operated on. Right and left can get a little confusing for those guys sometimes. Here is Jordan's special mark.



After the surgery, they moved her to ICU (as was planned). When they let me go back Jordan was squinting towards the door. Her first words were "Where have you been?".

She has passed all the silly little questions and tasks they have given her to check on the status of her brain. One nurse asked her the date. She quickly told him and then he had to check his iPhone because he didn't even know. I didn't even know what day of the week it was. So I would say she is doing pretty well.

She is witty as ever and we have been continuing some of the conversations we were having before surgery. They have taken her off of all the monitoring equipment she was on last night and are pretty confident we will move back to a normal room today for more recovery.

She had her first meal this morning since Thursday evening. I continue to eyeball the food as it comes in and clean up all leftovers. Even the hospitals in Portland can cook!



Jordan is a tough woman. I'm proud of her for taking this in stride. Thank you to everyone that has reached out, spent time with us and just shared what Jordan means to them. KEEP IT COMING! These things mean the world to us.

Brack

Biopsy day

The neurosurgeon came to see us tonight. We got some more information on what to expect tomorrow. The surgery will be at 11:30 AM Friday, Pacific time (that's 2:30 PM Eastern time for those of you who don't want to do the math). He told us that the biopsy (called a stereotactic procedure) will be done as expected with a needle from the back of my head.
We also learned that he will be doing a second procedure as well. Last night's MRI scans show a build-up of fluid on the brain that is not able to properly drain as it is blocked by the mass. The second procedure will be going from the top of my head endoscopically (with a tiny camera) to drill a new hole for the fluid to drain down. I found out I'll stay in ICU tomorrow night while I recover from the surgery.
Thanks for the prayers for tomorrow and thanks for the encouraging messages, comments, and voicemails. Brack and I are so thankful for the many people who are standing by us through this. Your support is a huge comfort to us.

Thank you,
Jordan

Answers

I'm typing this post from a hospital bed at OHSU in Portland. On Tuesday, someone from the neurosurgeon's office called to let me know they wanted to move my appointment from Thursday to Wednesday. She also mentioned the doctor would likely admit me after my appointment. I don't think anyone's excited about a hospital stay, but we knew this would be progress toward a more specific diagnosis and eventually treatment.

At the consultation yesterday, the surgeon explained what tests he wanted to run and also that he wanted to do a biopsy on Friday. The results from the tests will help inform the decision about the surgery. Last night, I had another brain MRI and a spinal MRI. It took nearly four hours. We are waiting for the neurosurgeon to fill us in on the results of the scans.

Today I have also seen PT, OT and had an EKG for Pre-op. Everyone here is very friendly and professional. I have gotten lots of compliments from everyone about the awesome socks my friend Michelle brought me.

The hospital is clean and beautiful. Check out the view from our room.

We feel like we are in good hands. The food is even good here. Food is ordered from a menu and it is like room service. There is no green JELLO and all of the fruits and veggies are fresh.

The surgery tomorrow should be a routine procedure for the surgeon. He is experienced in this procedure and is being very thorough before he moves forward. After the procedure, we will have to wait five to seven days to get full results. The results will allow everyone involved to agree on a full treatment plan.

We are in good spirits here and have appreciated everyone visiting and reaching out to us. Will post more as we know more. Thank you for your continued support and prayers.

Waiting

Already we are learning that our frame of reference for "accelerated" and "speedy" is very different from that of the medical world. After receiving a call today to schedule me for another consultation with a neurosurgeon, I had so many questions. I made several calls and left some messages for doctors to help me understand and finally got a call from a PA for the neurosurgeon I saw last week. She filled me in on the notes from the tumor board that met today to review my case.

They do not think it is best to begin treatment without a better picture of what we're actually dealing with. This means they are recommending further tests and imaging to try and determine what type of tumor I have and how they can best treat it.

I have an appointment scheduled with a different neurosurgeon on Thursday who will let me know what tests they want to do and hopefully get those scheduled. They also have a referral in to a neuro-oncologist who I expect to hear from next week.  

We know they want to do another MRI (this time of my brain and my spine) and a lumbar puncture. My prayer is that these tests and whatever others they have planned will give them enough answers so they don't have to do a biopsy, which I've already been told would be risky.

Obviously waiting for the next step is not easy. Brack and I are feeling a little frustrated by the waiting, but we are looking for the good in it. We've enjoyed having my mom here this week and are already counting down the days until our kids are home! (It's 26.)

New journey

I haven't written a blog post in over 3 years but thankfully this little site is still here. It occurred to me that keeping my health updates in one spot would be a simpler way to share the information with family and friends.

If you want to start at the beginning, here it is. About 3 months ago I started noticing I was having vision issues. I was seeing double at times and couldn't figure out why. In early April, I visited an eye doctor hoping it could be corrected with a prescription change. No such luck. The eye doctor could see the problem and wanted to find out the cause. I went to a series of doctors and some things were ruled out (like diabetes and thyroid issues).

In the meantime, the double vision was getting worse. It was happening (and still is!) constantly. I had an appointment with a neurologist on June 7 to check for possible neurological causes. An MRI on June 20 showed a tumor on my brain stem.

At this point, we are waiting on doctors at OHSU in Portland to review my case and recommend a treatment plan. What we know is the tumor is in a high-activity center of my brain and the neurosurgeon said a biopsy is too risky and he considers it a non-surgical case.

We are expecting more information on Friday afternoon and have been told treatment will likely be a combination of radiation and chemo. As of now, I have a few symptoms but no pain. My eyes only work individually and not together so I spend most of my day with one eye patched. My coordination and balance are off so Brack helps guide me around. I am recently noticing my tongue is feeling numb and my speech is starting to slur. Also, my handwriting is getting worse so be glad you're reading a typed message.

Brack and I have been blown away by the responses of people near and far already. From Fayetteville, GA to Parkdale, OR we've received calls, texts, emails and cards from friends old and new. Our co-workers have already gone above and beyond during their summer break to make it clear they are here for us. It's such a comfort to know so many are thinking of us and are willing to support us in this season. Thank you.

Brack and I are praying people. We are hopeful that God is already working toward healing and we are thankful for the peace and grace we've been receiving each day. We're also thankful for humor--if you know us at all, you know we're making jokes. Laughter fills our home each day and I wouldn't have it any other way.

Our kids went back east to spend July with grandparents. While we filled them in on what we know, it's not something that's too easy to understand. I'm thankful they are having a fun summer with family while Brack and I try to figure out this new rhythm.

My mom flew out to come see us this week. She's been a huge help around our new place in Parkdale and of course a great encouragement to me. Those of you who know her understand why I'm so glad she's here.

I'll keep posting when there's more news to share. Thanks for being part of our story.

-Jordan

Me and Brack at Crater Lake

View of Mt. Adams from our friend's house in Parkdale, OR (our new town!)

On Mount Hood (in June!)

Mom and me enjoying the summer in Hood River