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It’s My 6 Year Anniversary!

I had a whole blog post ready to go for day number 2,192 of my MBC cancer journey and then a song came on this beautiful spring morning that I had never heard called Flowers and I knew it needed to be a part of this post. The words so beautifully captured the last 6 years that a rewrite was in order this afternoon.  Here is the song “Flowers” by Samantha Ebert

Well, blue skies and hillsides feel so far away

And I wrote in my notebook that I’ve seen better days

Than the ones as of late

I can’t bear the weight

The rain won’t stop pouring out my windowpane

And I haven’t left my bedroom in 76 days

I wish something would change

‘Cause I’m losing faith

So I brought it up in a desperate prayer

Lord, why are you keeping me here?

Then He said to me, “Child, I’m planting seeds

I’m a good God and I have a good plan

So trust that I’m holding a watering can

And someday you’ll see that flowers grow in the valley”

So whatever the reason, I’m barely getting by

I’ll trust it’s a season knowing that you’re by my side

Every step of the way

And I’ll be okay

‘Cause I brought it up in a desperate prayer

Lord, why are you keeping me here?

Then He said to me, “Child, I’m planting seeds

I’m a good God and I have a good plan”

So trust that I’m holding a watering can

And someday you’ll see that flowers grow in the valley

Mm, mm

When I’m on the mountain and looking down below

I’ll see a valley of flowers that needed time to grow

And I’ll thank you for the rain

The hurt and days of pain

And I’ll bring it up in a grateful prayer

Thank you, Jesus, for keeping me there

You know just what I need, and you’ve planted seeds

‘Cause you’re a good God with a real good plan

And you hold my world in a watering can

So I can have peace ’cause flowers grow in the valley

The emotions of the first few years, the first few tried and failed treatment plans, all are echoed in that first verse and chorus. Those experiences are all written down in this blog and rereading them is one of my favorite things to do. I can look back and see that they are the stories of God planting seeds. The last verse of the song is exactly how I am feeling on day 2,192. I see the flowers growing in that valley and they are beautiful. 

So what else is growing these days? Besides my faith and trust that I am going to be Ok no matter what happens, not much in the world of cancer cells. The monthly labs and the spring scans done the past few weeks have proven that the treatment plan we started in October when things got a little hairy, was the right one and it has continued to be just what we needed to keep these cancer critters dazed and confused. Because of Jesus, scan reports show that all is quiet and stable. Our little critters are unable to get organized and have not set up shop anywhere new. Even their pop-up places in my liver and stomach have closed up for the season. Whooo Hooo! I have a doctor appt on Friday and am going to see about a dose reduction in hopes of lightening up these side effects. I love these drugs, but maybe we can turn the volume down a bit and still keep dancing.

One of the flowers growing in the valley is a trip planned for Switzerland in September. I am feeling the pull to travel and believe things are going to be ok enough in the next 6 months that we can head to more mountains I want to see in person. I find I have become deeply enamored by mountains, valleys and the high country over the past 6 years. Whether it is a mountain in Alaska, St. John, Idaho, or Portugal, God feels so big and so powerful as I stand in awe of them and Him, so I am beyond excited to see the Alps. 

Thank you for your continued support. I know that I am regularly prayed for by so many. Thank you for sitting at the feet of the “Great Gardener” on my behalf. My relationship with Him has grown exponentially over the past 6 years and your prayers have been a part of that.

To my friends stuck in the rain right now, I get it. It still regularly rains on me too. I hope this song gives you the same encouragement that it gives me. There will be flowers, God promised.

Much Love,

Jodi

It is time for another health update.  As you may recall, I was put on a new treatment plan in the first part of October. I am thrilled to report that there are signs in my lab work that I have the right drug on board at the right time in this journey. The tumor marker number in September was at an all time high. 2,345 for those of you who watch that number with me. Scans this fall indicated that the cancer critter had started taking up space in my stomach and liver which created that big number. We knew it was on the move somewhere this summer, we just needed time for it to be revealed.  Here is the exciting part. 2 weeks after starting the new meds we saw a drop to 1335! The marker had taken a massive downward turn and continued to do so in November. The December 5 labs showed it at 277. Whooo Hooo! 

Scans on December 23 will confirm what we hope or show us another part of this ride. Either way I hear Jesus whisper “ Jodi, I’ve got you, you can let go”.

 Many of you have asked about side effects. I now call them my “ light and momentary afflictions” after a deep dive into 2 Corinthians 4:17-18. They certainly are ever present in my life mostly Monday-Thursday (see the girl in the front row) but they are very doable especially knowing that this treatment is working right now. 

We are reminded almost daily about God’s timing and His faithfulness. Not only are we seeing it with this current med plan but we continue to feel it through our family and friends. In the last blog, I asked for you to reach out when prompted and I am so humbled to report that many of you took the nudge and did exactly that. Your texts, prayers, cards, calls and hugs either in person or in spirit have continued to lift me up and give me the reassurance that He is sitting right next to me on this roller coaster ride.  

Thanks for including us in your prayers. We are asking The Lord for the scans in a few weeks to confirm that we are coming into a “flat part of the track” for a little while.

Much Love,

Jodi

Good afternoon! What a day I have had. I couldn’t wait to sit down to tell you about it. First, you need to know that if you were a part of Team Turtle either by joining us at the Bee Brave 5K this morning AND/OR you were a donor team member, amazing things happened. We welcomed 75 family and friends all who are a part of this special team to the annual 5K race that supports a breast cancer research lab in our area. Every dollar goes directly to our favorite researchers as they work tirelessly to “slow this thing down”. Team Turtle raised $12,500 as of high noon. That is twice the amount we raised for last year’s race. The total for Bee Brave was coming in at $155,000 the last time I checked. That is $50,00 more than last year! No administration fees and or race costs are taken out of the final check that goes to the work. That makes this event extra unique and special.

As you may know, October is breast cancer awareness month. Before you donate or purchase anything to support research, do some homework and see just how much of your money is making it where you want it to go. It may surprise you how much is used up in other ways. If you didn’t get a chance to join us, here is the link that will be open until the end of the month. Team Turtle Donation Link. Again, I am so grateful for a community of friends, friends of friends, and of course my family for helping me captain this amazing group of caring generous people called Team Turtle. 

Ok, while we were warming up for the weekend, more info came in about the next treatment plan. I am going to start another oral medication that is partnered with a monthly shot. This combo is designed to target a second mutation that is propelling my cancer to travel in search of new territory. From my time on Facebook support groups, I have figured out that some people get along fine with this recently approved treatment plan and have little side effects, while others are experiencing side effects that I simply don’t want, including diabetes! So join us in prayer as we ask that the side effects will be non-existent and the effectiveness of these meds will be quick and long lasting.

So many have told us to “Let us know what you need or what we can do”. Here is my response. Right now (really always) we need to feel the presence of our Heavenly Father in the day to day. We need to be constantly reminded that He is for us, with us, and is going to continue to take good good care of us. He is going to do that through our family, friends and even complete strangers. So when you get a prompting or a gut feeling that you should call, stop by, send a note, or whatever the nudge is, please just do it. Don’t over think it. We will feel the love of our people and more importantly, the love of Jesus. Thank you in advance for being His hands and feet.

I believe we need 4-6 weeks to give these new drugs a chance to show their stuff. I will be sure to update the blog as we learn new things or need to hit the refresh button on the prayer requests. 

In His Grip,

Jodi and Steve

September 25, 2024

We are officially into the fall season here in Michigan and it brings so many of my favorite things. I love hot cups of yumminess, donuts, leaves turning colors, donuts, sweatshirts, blankets, socks, long pants, donuts, football, cool nights and temperate afternoon temps. What I am finding in the last few years is what I don’t love about fall… the changing of treatment plans. After a summer covered in God’s fingerprints, we are looking at an uneasy, uninvited season of unknowns. Around the middle of August, I started feeling “yucky”. The energy dropped, the pain in random places increased and I started to get that sinking feeling that something was on the move. After several tests and scans over the past week, we have found our little cancer critter taking up residence in my upper abdomen and a few more bones have been added to the growing list of habitats. Ugh! Treatment changes are simply no fun. What side effects will we be dealing with? What schedule changes will be on the calendar? How complicated will it get with insurance? And the big one.. Will it work? The crazy thing about these questions, we have to “wait well” for the answers. Thankfully we know God has them and we deeply trust His nature and His plans for us. It still feels freaking scary in the middle of the night though!

It is going to take some time to get things sorted out before the next treatment starts. In the meantime will you pray with us that there isn’t some wild growth spurt while there isn’t any treatment on board? Pray for my family. This is just as hard on them as me and pray that while I may not feel good right now, there are still many good days ahead. 

Thank you for your love and support!

Jodi

I thought I should send out a quick update on current treatment plans. I am reminded almost weekly that so many people (some who I don’t even know personally) are reading these updates looking for ways to pray, support, and encourage me. So here goes! My medical team has decided to try a little different approach to disrupting the growth of the cancer cells. Scans early this spring did in fact show some progression. It continues to be in my bones, primarily in my back, hips, ribs, and sternum. There are a few satellite places but these are the biggest ones. My organs and brain have not opened up for business and we pray that they continue to stay closed to cancer. Rather than jump to another oral medication or even go to IV chemo, we are going to try some radiation. When I started this journey, the doctors assured me that we had lots of things to try. That was 5 years ago and I have indeed been working my way down that list. So the idea is to save a few treatment drugs in case things do in fact spread to my liver or lungs or wherever looks inviting. So on June 5, 6, 7, 10, and 11, I will be going to Grand Rapids for 5 total zappings. We are going to start with 2 places that seem particularly hot these days. I should know in 2-4 weeks if it “worked” and cooled those spots off.

So the prayer requests include that the radiation is effective and perhaps can be used for other spots that need attention. Pray that the summer is full of fun memory-making with my family and friends and that I continue to trust Jesus more and more every day. I so appreciate you all for taking the time to check on me. It means more than you will ever know or I can fully express.

Love,
Jodi

April 3, 2024 marks day number 1,827 since I sat down to a Mychart report that told me I was going to get to do this cancer journey some more. As I watched this day approach on my calendar I started thinking about this blog post. Certainly I needed to remind myself, my family, friends, and readers of this blog that we have hit a very significant day. April 3, 2024, marks 5 years of not only surviving but thriving with an incurable disease. There are so many things I could write about that have happened and have not happened over the past 5 years. It really is hard to wrap my mind around. This one blog post could turn into a 500-page novel real quick and we all know that reading that much text on our phones especially is not fun. So what do I share? What DO I document on this momentous occasion?  Then this writing appeared a few days ago from a dear friend and I knew this was it. It wasn’t written for me or even for long haul cancer patients specifically, but it sure does do the job of explaining how I am honestly feeling today. So here goes…

Blessed are we, the anxious,
with eyes wide open to the lovely and the awful.
blessed are we, the aware,
knowing that the only sane thing to do in such a world 
is to admit the fear that sits in our peripheral vision.
blessed are we, the hopeful
eyes searching for the horizon,
ready to meet the next miracle, the next surprise.
yes, blessed are we, the grateful.
awake on this beautiful, terrible day.

Good stuff right? I thought so too. Can you do me a favor? If at any time in the last 5 years, you have whispered about, pleaded for, or even casually mentioned me to Jesus, will you take a minute now to acknowledge Him and thank him for what He has done for me. It is more than I could have ever imagined back on April 3, 2019, and here is where this writing could turn into the novel. So let me put out this invitation. If you want to meet up and hear the stories of God’s faithfulness on this journey, I would love to tell you about them. Let’s get a drink (hot or cold) and have a good ole’ fashion sit and share very soon.

When I was looking for the words for today, not only did I get the beautiful/terrible writing, I also stumbled (not by accident I am sure) on this song by Maverick City Music. It sums up the past 5 years beautifully too. I hope you have time to take a listen and add it to your own playlist.

For My Good – Song

Pictures are just as fun as clever writings so enjoy some photos from the past 5 years. You will quickly get a taste for just how good it has been. Highlight photos 2019-2024

Last but not least, stay tuned for some more talking points with Jesus. Tumor markers are not stable and we are waiting on some scan reports due in soon. We may be at another crossroads for treatment which sounds both beautiful and terrible to me.

Much Love and Gratitude to you all,

Jodi

February 2, 2024

We were given a peek into how things are going with this new treatment plan yesterday and here is what we know… not much… yet. If you remember I started a recently approved, new oral drug, at the end of October. I just had the first set of scans to see what we could see. The CT scans of my neck, abdomen and thorax showed us, there is still no disease in my organs or lymph system. That is always the best news!  The bone scan was a little less definitive since it picked up the disease that we know about in my skeleton. The disease is there but with a question this time. “What is that little shadow? Is it healing that the scan is showing or is that progression?” It’s a little tough to tell with the way my tumors look to a radiologist. These elusive shadows are not totally uncommon but do add a bit of mystery. My tumor marker went down in December and January which is always a good sign and then jumped up a bit today. We all would like to believe the markers are a pretty good indication of what is going on, but this is science and certainly not exact. See what I mean?  We don’t know much. 

We DO know that this drug is getting a reputation among users for being slow. Team Turtle usually appreciates that speed and so we are trying to embrace slow in this scenario as well. The plan is to check the marker again in March and see what the trend is… still going up? or has it started to head in the direction we want again. As of this morning, nothing too crazy is going on so we aren’t going to do anything too crazy and I am going to try to not go crazy in my head. I will continue to take this med for the next month and we will continue to trust the plan we have, but more importantly, the one God has. 

In less puzzling news, the third annual Bee Brave Puzzle Competition is next month on March 23 at 10:00 a.m. at South Christian High School. We are busy planning for 30 teams to meet up and compete to see who can finish a copy of the 500-piece puzzle I picked for this year. It is a good one and I can’t wait to see many of you at this friendly fundraising event for Van Andel Institute. If you are curious to know how fast you and your 3 friends can do a puzzle, join us by following this link to register your team. Team Registration Link. If you are unable to attend but would like to support Team Turtle’s 2024 fundraising efforts. Here is a link to make a straight donation. Donation Link

Thank you so much for checking in today. We feel your love, support and prayers. This journey would be so different and soooo difficult without you.

Love,

Jodi

November 6, 2023

Happy November! I wanted to be sure to circle back around after our last post regarding this next treatment plan, then I want to tell you about one of the best weeks I just experienced. But first, do you remember this song?

A Spoonful of sugar helps the medicine go down

The medicine go down-down

The medicine go down

Just a spoonful of sugar helps the medicine go down

In a most delightful way

Maybe you don’t want to spend too much time recalling this tune from Mary Poppins, it can get stuck in your head. Trust me I know. It is however an appropriate melody to hum as I embark on a new drug called Oserdu. I was approved to get this ridiculously expensive, new this year drug, for the rest of 2023. If it works and I can stay on it, we are trusting God will provide it for 2024. Fun fact about this 3-inch horse pill,  it requires a heavy dose of fat to go down and stay down without too much nausea (in the most delightful way). I met a woman on the Facebook support group who literally eats a slice of cheesecake each night with her pill. I’m not sure that is exactly what the dieticians recommend however, I do love the idea. I have opted for avocado,  peanut butter, or my favorite chunk of cheese and so far it is staying down! Not opposed to trying the cheesecake thing or any other high-fat dessert as we get closer to the holidays. Weight loss can be a side effect. Pretty sure I am not going to experience that one. The rest are waiting in the wings and I am not making eye contact with any of them.

So what do you do to start a new treatment plan? Well in God’s perfect timing, He surrounded us with a group of amazing people by attending a retreat for cancer patients through an organization called 

Little Pink Houses of Hope. The following is the Facebook post from one of my new dearest friends, Jessica. She explained this past week better than I could ever have…

Before our diagnosis, we’d never heard of Little Pink, but with something like cancer you learn about a lot of new things, joining a world- for better or worse- of things, feelings, and information that we had no idea existed. Little Pink hosts retreats for couples and families touched by breast cancer. We were lucky enough to be chosen as one of six couples for a weeklong stay at a beautiful beach house in the Northern Outer Banks.

When we were first contacted I was very excited, but as time passed I questioned whether I/we “deserved” it or needed it. We were nearing the end of treatment, my energy levels were moving in the right direction, the physical signs of cancer were fading and I was looking forward to putting cancer behind me. I questioned whether it made sense to stir up emotions or take the place of someone else who might need it more.

I could not have known how wrong I was. You never put cancer behind you. It’s part of our story and this retreat was exactly what I didn’t know I needed. I cannot fully describe it other than to say it was awesome.

I’m so thankful that we, along with five other couples, ignored all the signs that pointed to this as a classic “true crime story” (e.g. meet strangers in a parking lot, leave your car behind, get into car with strangers, be driven to a remote location accessible only by 4×4, and be possibly trapped by high tides for a free vacation) to come together for a once in a lifetime experience. We were loved on, provided space to talk freely with each other never wondering if it was too much cancer talk, too much information, or not enough- we asked questions, shared experiences, laughed, cried, and had great conversations (till the wee hours of the morning).

This retreat was only possible through the efforts of Little Pink and many many donors. Someone donated their beach home, multiple restaurants donated their space and food, local businesses donated their services for activities and relaxation, churches donated handmade quilts and others donated products to build us each a beautiful welcome bag. We had volunteers donating their time to coordinate activities, solicit sponsorships, another shut down her business for a week to come cook for us. Each one donating and giving with no expectation for anything in return.

If you know someone affected by breast cancer I encourage you to check out littlepink.org. Beyond the retreats, there are numerous ways to get involved and support an amazing organization. I will forever be thankful for my time in the OBX and the amazing people we connected with during our stay.

Wow! Am I right? It wasn’t a week’s vacation where you ran from this cancer thing and your life as you knew and know it now. We got to that in Portugal last month. It was 7 days of looking cancer right in the face and saying “ We see you, and we see how God is using you for good”.  One of the best 7 consecutive days I have ever had. My soul is full. My body is rested and I am enjoying all the spoonfuls of  “sweet” this life has to offer. 

Thanks for checking in. Thank you for your continued prayers for this drug to munch its way through all the little cancer cells and thank you for being a part of the story.

Much Love,

Jodi

October 23, 2023Wow! What a response. The response of my family and friends was absolutely precious when I asked for prayers through this blog last week. Over the past few days, we all joined in and asked Jesus to clear the way for the next treatment drug. Wow! What a response. He gave us exactly what we hoped would be His plan. I am getting this new drug (for free) and I start it this Thursday. Wow! What a response is exactly what we are praying for next. We are simply asking the Lord to let the cancer have the most remarkable response to this new drug. And everyone said “Amen”!

Finally the long-awaited update! Goodness, this has been quite the month. Great in so many ways that I have had a break from treatment, but it is time to get back on the course here. The last of the tests and test results finally were all done yesterday (Thursday, 10/19). Which was a total God thing since my appointment was this afternoon (10/20). This meant that my Doc had all the needed info to set the next treatment plan in place. Thank you, Jesus.

Here is what we know – in the simplest terms I can understand and relay here. Tests showed that my cancer cells have picked up 3 mutations. Not surprising that it would pick up at least 1, as 40% of metastatic breast cancers do over time. It is how they work around treatments and keep going. One of the mutations has a new drug just approved by the FDA in March of this year to target it. Another mutation has a clinical trial going, and the last one has no treatment options. So plan A is to get me on the drug for mutation 1. It is in pill form and taken daily. I would be on this until I or my body can’t take the side effects OR the cancer works around it and shows up as new tumors somewhere. So far it has been reported by people on it, that it is fairly easy to tolerate. As I was leaving the doctor’s office, they were putting in my application to receive this drug for free from the manufacturer. IF I don’t get accepted, we are looking at a $4,000 per month copay and that would take this drug off the table and we would move on to getting into the clinical trial for mutation #2.

Wednesday’s CAT scan showed that the disease is still just in my bones. This is exactly the news we hope for each time that we check. Those scans will now come more frequently. Every 3 months we will check to see when/if it jumps over to my liver, lungs, brain, or any other spot that looks inviting.

I’m guessing you can see the specific prayer requests over the next few days. I need acceptance into the free drug program. It is that simple. I then need this drug to give me a really long, outlier response. The Doc said if we could get 2 years that would be amazing. Most people so far are getting 4-6 months before looking for the next treatment plan. My logic brain is telling me that Jesus has this already set. He knows exactly how today’s plans are going to play out and I simply have to trust. My feelings brain is trying really hard to let logic lead. I just keep telling Him that there are some great circumstances here that He can use to really show up and shine. 

As soon as I know something, I will be sure to post an update here. Thank you for joining us and praying fervently this weekend.

Love,

Jodi