Sunday, December 10- LIVING! NOT JUST EXISTING! GBM - Encouraging December Monday Blog!

On November 13 I posted a pretty heavy post.  now I want to counter that with something a bit more positive.  Filled with HOPE AND A FUTURE.  

I can't believe the amount of travel we've been able to do!  

 In September we spent a lovely week in Curacao with Wilbur & Sarah to celebrate their 50th anniversary.  And in November we took the kids and grands  to Grand Cayman and stayed at an Airbnb for our Christmas.  And now I find myself in Florida with 6 coaching friends to watch the NCAA WOMEN'S VOLLEYBALL CHAMPIONSHIP in Tampa.  Go Big 10!

I have also begun wearing the next course of treatment called OPTUNE.  which is a cap of arrays that keep the cancer cells from replicating.  I've got a lot of living to do!

SOMEWHERE BETWEEN A HOPE AND A FUTURE

This is where I’m sitting with my emotions right now. Which I thought was odd and inappropriate until I read my friend Cheryl’s CaringBridge entry, and she wrote about a new word. GOODHARD. Good & Hard can coexist just like I believe my Hope will come & go, but it doesn’t mean God has left me or that He doesn’t have a Future planned for me. I’ve not lost hope, but I often sit and wonder if this is how dying feels. I move slowly between my recliner and the bed and continue to challenge myself to “get moving” to a Future! Thank goodness for morning visits from Abbi and Carson that gives life to each day! 

These are a few random thoughts that I work my tired brain through. Warning: This is gut-wrenching, painful processing, that I’ve already warned my kids about. But it’s also my reality. Here’s my HOPE…that these decisions are many of years down the road! 

• I’ve got new babies to snuggle, pray for, and love. Abbi & Ian are having a baby boy in April. Making Carson a big brother....And Mitch & Lydia are also adding to the clan in the spring. So much to be excited about! SO much FUTURE! Did you catch that? TWO new babies in the spring!!! 
• How much funeral planning should I be doing? Or leave it all up to my family? I don’t want to overwhelm them with decisions. Alli & I already worked our way through a few forms and that’s been very helpful. 
• Pallbearers: who do I burden with carrying my steroid- bloated diseased body? Am I buried in an expensive wig I’ve worn 3 or 4 times? Absolutely! Gotta look good, but don’t expect an open casket, I’ve made it well known that I don’t want people staring at me. - Heck, I’m tired of being stared at now and I’m a living breathing human being. -- -- Reminds me … casket … do I pick it out? 
• Where do I want to die? Where do my kids want me to die? Here in my home where memories will live on for generations to come? Or in a hospice facility where everything can be managed for the good for all of us? 
•  FUTURE - Did I mention there’s more grandbabies in my future? There isn’t much more “future” than a brand-new baby. God is SO good! Except as soon as I hang up our new family picture it’s outdated. No problem! I’ll take it. 
• I want to travel. Not sure where but I’ve got a list of destinations to see. 
• I’ve got a responsibility to be fully present for my kids and grands … especially for Christmas. 

 If you find yourself between a HOPE and a FUTURE, dig into His word and find His promises for your own life. Please pray this FOR me, OVER me, and WITH me… 

“Dear Heavenly Father, Take my hands and gently lead me back to the middle of a HOPE and a FUTURE. A place of perfect peace where I can rest in your embrace. Amen.”

A fun video of Carson for some smiles...

GBM Treatment

 I've been getting a lot of questions about the infusion and other treatments I've been doing/considering.

I had an Avastin Infusion this past week, which is meant to fight inflammation and for me to be able to quit taking steroids which is the end goal.  I may have one or two more of that infusion,we will wait to see how I respond to the first one.  So far I've noticed a marked improvement in my physical abilities however my brain is still half functioning in my opinion.  I'm sitting here right now having to work really hard to figure out what day it is, which I can do, but it is just a lot of mental work..   There are still many doctor appointments, blood draws and telehealth visits that fill the calendar and make it hard to keep track of it all.  This brain confusion remains the symptom that gives me the most frustration and the most tears, feeling like I've lost control of my life, and it's really no way to live, at least not the way I want to live.

Chemotherapy - I've completed radiation and two rounds of chemotherapy. I am cycling what they  call 5/23 which is five days of taking a chemo pill at night when I go to bed and then 23 days off. So far I have had minimal chemotherapy symptoms which is such a blessing.  Every two weeks I have blood work to see how my body is responding to the chemo and then they adjust the dosage based on that. This will go on for five or six months. So we will sneak away to Florida whenever we can in between treatments.

Speaking of which ... Saturday we're heading south with the Stiffney's to give Alli & family a much-deserved Fall Break.  We will be gone 10 days  and I'm so looking forward to no appointments to keep track of.  

Shout out to my therapists, Jamie and Jill who give me exactly what I need each time they come.  Last week I walked on the treadmill at .5 mph,yes, that says .5 for 3 whole minutes and was exhausted.😂  Today Jill massaged my lymph system to get rid of built up fluid.  The two of them are working hard to keep me functioning at a level that works for me.

I am currently waiting on insurance approval for a  treatment option that I have coming up. It's called Optune and it's a bandage cap that I will wear with electrodes 18 hours a day. Power supply is a battery pack that I will need to drag around .  Feels very cumbersome but I will do what is needed to prolong  my life until a cure is found!  I will look a little odd for several months but in exchange I get to love on my grandkids another day, and have them put stickers on my beautiful baldness.   OPTUNE WORKS

And of 

And 

GBM - Blessings Upon Blessings! October 2023

 This Holy Sunday morning began with me throwing a tiny temper tantrum, all because of a stupid wig-wearing attempt. Silly I know, but sometimes a woman with GBM just wants to feel independent and somewhat pretty (not bald!)

Blessing #1.  I dried my tears and made it to Sunday School - 1 full hour of sitting and soaking in all my dear friends, friendly and loving voices whirling around me.  You absolutely don't know how much you miss your church community until you haven't been there for 4 or 5 weeks!

Blessing #2 Everyone else that I saw before church.  Hugs, chitty chat, promises of never-ending prayers!

Blessing #3 A big hug from my favorite drummer (after Tyler Clark)  :)    

Blessing #4 Hugs from high school boys who found the right encouraging words to say to me.  I've said it before but it's worth repeating, our high school and middle school kids are THE BEST!

Blessing #5 Coming home to a comfy bed for a much-deserved nap!

Blessing #6  My college bestie came from Iowa to stay for the weekend and help out.  Great break for Dave and for me.  And bonus:  Fig Pizza at Venturi's 

Blessing #7 The biggie - After I went to bed an acquaintance  (and I mean that because I don't know her well) had been noticing that I didn't have my usual pumpkins on my front porch steps.  So she thought she could surprise us while we were at church.  How cool is that!?!  My porch is decked out just because someone wanted to bless me!  I'm just sitting here feeling all the feels of love from so many of you!

No more tantrums!  Life is too good for that nonsense!  After all, it's just hair a wig!

Looking ahead to Tuesday for the scheduled infusion.  My expectations are HIGH for that little needle to transport my brain into the functioning/ living organ that it's supposed to be.  And if that doesn't happen there may or may not be a ginormous tantrum and then look for smoke on Amish Highway 35, because my emotions are tender and I've likely imploded. But  through it all I will continue to cling to His promise in Jeremiah 29:11 - HOPE and a FUTURE!

GBM - SEPTEMBER 2023

June 5 diagnosis in Anchorage June 12 tumor removal at Northwestern I had to put those dates down so I could see where the summer has gone. 3 months! Sometimes it seems like a blink of an eye, and other times like an entire lifetime. 

Speaking of … my medical professionals have never talked about my prognosis, but none of us know when Jesus will welcome us home. JUST BE READY! I am choosing to live like my neurosurgeon told me, “patients that make the most of each day, have the greatest long term success with treatment.” 

 On Tuesday, October 3 will be my first return visit to NWM for an MRI and doctor appointments. They’ve warned us that this scan is more of a baseline for moving forward with treatment and it likely won’t show true results. I’m ok with all of this. I’d rather not have the gray cloud of “number of days, weeks, months, YEARS!” hanging over me as I pour my time & energy into my kids and grandkids. Jeremiah 29:11 Hope & a future. 

In happier news: I was able to reach my nose with my left hand today! For the last 4 weeks I was barely able to lift my hand off my leg. My nose is cleaner than it’s been in a while. Other things many of you don’t think about: holding a jar in one hand so you can take off the lid with the other, wringing out a washcloth, pulling up your pants, putting on socks. Simple tasks but very difficult one-handed. Also, the last few days my brain has seemed to settle a bit. Keep praying for my poor radiated brain – I keep telling Dave I have brain damage, and I’m convinced it’s true, then he sweetly reminds me of everything I’m succeeding in, and we have another good cry together. Maybe we are figuring out the correct steroid dose to reduce the radiation inflammation, while still keeping my physical mobility where it needs to be. 

 I’m very pleased with the knowledge and prescription expertise that Dave provides! He truly is amazing in his care for me. We’ve got a Prescription Charcuterie on our kitchen counter and he manages it well, giving me various drugs about 4 times a day. 

How could I forget our September highlight of a trip to Curacao with my brother and his lovely wife of 50 years! I’m so honored they wanted us to celebrate with them on a perfect little island. We were super lazy, laid by the pool, got lost in a roundabout, ate dinners on the beach, watching the sun sets. I managed to get into the ocean … getting out however was another adventure all together … lets just say we provided free entertainment to everyone on the beach watching. Wilbur & Sarah took such good care of us, just like they always have. 

 

We had so much soul-warming and inspiring conversations about our Dad (Lloyd), his love of travel and people (hmmmm… maybe I got wings on my feet from him?), family business the good, the bad, it truly is the BEST!- proud of each person in our family that are bravely forging their own path – you know who you are! It’s hard work, but so worth it! Parenting adult children – it ain’t easy! And of course reliving so many fun memories of Dave & I babysitting their kids and Jason giving us permission to sleep together when we stayed overnight. It simply was the best break from cancer treatments and appointments! Thank you for blessing us with the week away!

And finally...Photo of the grands that bring us so much joy! 

Jeremiah 29:11 - Hope and a future

GBM - Happy Birthday?

  Allow me a little whining here ... It's my party and I'll cry if I want to".😢 Another birthday, another year of life, even though the last 3 months I've not been living.  In all honesty, I wouldn't wish this horrible cancer on anyone!  The unknowns, the treatments, the way it turns everyone's lives upside down.

BUT  ... with God there's always a but, because He is faithful!  
I'm able to breathe in His goodness one more day, in my favorite vacation spot - Florida!

I'm able to love my family one more day, hopefully many many months or years!

My caregiver is topnotch!  I literally wouldn't be alive without his pill-dispensing skills.  He also helps me keep focused on what's important in the moment, and supplies me with endless tissues.  I'm hoping he buys me a steak dinner tonight for my birthday.  Dave, you're my rock!

Best bday present today would be to get the dang left hand working again. 

I'm going to celebrate this life I have been given, it's a gift from God!

  

GBM - "Don't Give Up" - Saturday, 9/2/23

It's the end of a second week of sleeping and recovery from radiation.  Along with a great feeling of hopelessness.  Yesterday I cried AGAIN to my radiation doctor asking if theres anything I can take/do to get some energy back, and of course he said "listen to your body and sleep when you need to." Problem is I have too much to do and too much life to live and friends to see,  I don't have time for this sleeping nonsense!  My left arm/hand is also useless.  We (Dave) is still trying to figure out steroid dosing and tapering to help get beyond this.  

Here's the cool thing ... when we were leaving the cancer center I saw my super sweet cousin Joyce.  We shared a hug and more tears and she said "don't give up!"  She has NO idea how much I needed to hear that right at that moment.  God was present!

Abbi made arrangements for family pics, the other photo shoot was for family pics too but someone was still driving home from Alaska, and it wouldn't have been a family picture without Kevin.  So Abbi lined up Faith Miller Photography to come for family pics.  I'll throw a few in here & there when I can figure out how.  They're pretty amazing considering the numbers and ages of our group.  I'm sharing one here that say's "Don't give up!  This is what I live for!"

Jeremiah 29:11 Hope and a Future

Love to all my prayer warriors!

Cindy

GBM - Life on Amish Highway 35 - REVIVED

Life On Amish Highway 35 Blog has been revived!! I wanted to get this blog going again so I had a place to journal, track and reflect on this journey. I've printed the old blog posts (2007-2011) in it's entirety into a book form, and I enjoy sitting down occasionally to read a few posts. I want to do the same with these new posts eventually, so I decided to re-start my blogging engine :) 

If you need some entertainment, a few of my favorites:  June 13, 2010, December 15, 2009, and November 22, 2008  Enjoy!

Also, scroll through carefully ... 9 month pregnant and super cool hairstyle, cutie patootie Allison in our kitchen, before the 2 remodels that followed.   However, I noticed that the post is on Mother's Day, which I find appropriate in this particular time.  I don't know how I would manage without my kids!  I'll celebrate them in future posts.

I hope to be able to print this "journal" some day, and reflect back on this journey we are on. Occasionally, I will be moving/copying many of the old GBM Facebook posts/updates here so I have the whole story in one place and so I never forget God's goodness in this unexpected journey I'm on.  GBM will be a part of each title, so I can keep it sorted .  GBM is glioblastoma and what I'm learning is it's the worst cancer anyone could ever have. But I'm not living that mindset ... more on that later.

And a disclaimer before I begin my heavy, thought-provoking musings.  :)  The title of my blog isn't intended to make fun, but to celebrate this amazing neighborhood we live in!  I moved to this farmhouse with my parents when I was ONE in 1965.  My parents started Jayco in the barn in 1968.  We moved here with Alli and Mitch in 1997with Kevin and Abbi soon to join us. We sit pretty close to road and watch the traffic on this super highway that is a popular road connecting Goshen to Middlebury.  We see a lot of RV's, Yoder Toters (what I call vans hauling Amish), buggys, pony carts, bicycles, and recently semis hauling eggs have filled in the gaps going to the new egg processing plant that was built last year.  It's a busy road.  We are one of a few "English" (non-Amish) families that live in our mile.   That's where the name is from, and we love it here!

More to come soon...Welcome back to Life on Amish Highway 35!

Jeremiah 29:11  Hope and a future