It’s been a long time since I’ve written an update but I’m happy to report the reason is because I’ve been very busy — with (mostly) happy things. 

The end of active treatment
I finished what’s considered “active treatment” (i.e. chemo, surgeries, radiation while the disease is active in your system) this spring and was soon after declared to be in a state of “no evidence of disease.” To be honest, it was strangely anticlimactic. There’s no scan that proves you’re clear (more than likely, nothing would show up even if something was there) and no test to know if you got it all. It’s just assumed that we took the necessary steps to eradicate the threat and now we arm ourselves with everything we can and hope it doesn’t return. It’s a very strange feeling to cross a finish line and not know if you actually completed the race. But I’m still so grateful to have done so… and to have the blessing to keep pacing forward, even despite the fear and unknowns. 

Grand gestures
To be somewhat transparent, I was in a dark place before my diagnosis. I was losing faith in people and the overall goodness in this world and was heavily discouraged by failed attempts to solve personal problems far beyond my control. But now, to think about all those who have demonstrated their unsolicited support and incredible kindness this past year and a half — it’s simply overwhelming to witness that kind of darkness still exist, but be overshadowed by so much love and light. 

I read a verse recently that really struck me:

God’s love IN us heals and transforms us. 
God’s love THROUGH us heals and transforms the world.
Love God. Love others. Be the love of Jesus everywhere you go. 

To everyone who contributed to the GoFundMe campaign or shared donations, thanks to you we were able to stay afloat during what resulted in my needing to be off of work for more than a year (even though expenses such as three kids in daycare, diapers, formula, normal household bills, remained along with medical expenses, travel for treatment, etc.). To everyone who shared cards, texts, or comments via social media, know that your words served as a source of encouragement at times when I sometimes felt like I was hardly hanging on. To those who put together care packages, we appreciate the creative ways you thought to bring sunshine our way and the practical items you shared to help us ease the burden. To those who helped us with meal prep, you have no idea how much this helped. And to those who showed up at our door to help with practical logistics, these things simply wouldn’t have happened without you. It still astounds me that SO many people cared and were willing to share such kind gestures and generosity for “little ‘ol me.”

I believe I mentioned this in my last update, but my dad’s family (several of which have gone through cancer battles of their own) threw me a party when I finished active treatment. Surrounded by their overwhelming encouragement, we celebrated the completion of my harshest treatments and faith for a future ahead. I will be forever grateful for their love and support.

We were also surprised with an unbelievable gift on behalf of the Just Jess Foundation. This local, grassroots non-profit formed only a year or so ago but has worked tirelessly to fulfill their important mission: awarding vacations to families with a parent experiencing a critical cancer diagnosis. We were the first ever beneficiaries of their cause, being awarded a Disney cruise that truly completely revitalized our mental health. After spending most days in a hospital and nearly every day planning the next step in our care processes, I cannot tell you how transformative it was to be planning our first-ever family vacation and having something so overwhelmingly positive to look forward to — especially after so many failed attempts to do so up to that point.

My amazing friend Rachael drove me and Baby Cody down to Florida because I couldn’t fly at the time. I cannot tell you how amazing it felt to drive through Milwaukee… and not be exiting at Froedtert. An added bonus was being able to stop and see a friend in TN and one of our BFFs in Atlanta for a few days, sharing a beautiful reunion after all my friends did to show their support throughout my treatments. It was also therapeutic to have so much one-on-one time with Baby Cody making up for the traumatic separation we had days after he was born. Rachael drove the entire time during each leg of the trip and even stayed up with Baby Cody part of each night. This girl has always loved so fiercely… even if she tries not to show it. ;) 

Dave flew down a few days later with Dean and Will and we all met up in Orlando, along with my Uncle Steve from Wichita, KS who came along as our helper. We spent the day before boarding the cruise at a gator farm, which was a highly-anticipated event for the boys! The cruise was amazing and there’s simply no way I could recount every detail of how incredible it was. Before this point, I’d always most highly regarded organizations that support basic needs, but after this experience, I can honestly say that the Just Jess Foundation saved our family. What they were able to provide was exactly what we needed to forcibly remove ourselves from everything in order to begin regaining our mental health — in a way we never would have been able to on our own. Please help spread the word about this incredible organization!

Just Jess Foundation Facebook Page
Click these links to watch PART ONE and PART TWO of my interview with the JJF
Donate here
Nominate a family here

Here’s a link to a video I made about our drive down to FL. 
(I’ll finish the one for the cruise at some point!)

Another unique and incredibly grand gesture came in July when we attended the premiere of a composition my friend Theresa Martin wrote in honor of our journey. Theresa drove down to Milwaukee with me for one of my treatments and was one of my biggest prayer warriors. Her incredible depiction of this experience has allowed me to process emotions in a way I never thought would be possible and just proves the healing power of music and the creative ways we can all help each other when in need. 

Click the link below to watch the video we made about Theresa’s incredible music and our story!
“All That Remains” video

When I start to recount everything that has happened, people tell me I should write a book because it’s so unbelievable. When I talk about it, honestly, sometimes I feel like I’m making it up and can’t believe it myself. But the truth is, it’s not a story of hardship. It’s a story of renewed faith, human spirit and unbelievable gestures of kindness and love. And when I think about all of the ways that so many people rallied support, in gestures great and small, I’m simply speechless. From the bottom of my heart, thank you to each and every one of you. There are so many people on the list, but it is my sincere hope that in time, I will be able to return your kindness. 

Returning to work
Another peek behind the curtain: I get really self-conscious when I mention that I was off of work for an entire year. There have been a few people along the way who seemed judgmental of my time away but the truth is they have NO idea what all was happening behind the scenes. I know there are other people who went through cancer treatments and worked at the same time, and I mean this with no intent to diminish the struggle behind other situations, but it’s also important to note that there is no apples-to-apples scenario when it comes to a “cancer journey.” 

I could go through everything on the list but the reality is it doesn’t matter. We were clinging onto the phrase “one day at a time” like never before and on top of the “big things” it seemed each day produced other surprises that would have been a challenge under normal circumstances. It got to the point where we would look at each other and just shake our heads because nothing surprised us anymore. There’s no need to go into detail, but the reality is no one will ever know all the layers of how bad things truly were behind the scenes. And I’m so grateful for the opportunity not to have had to balance a full-time job on top of it all. There’s simply no way it would have been possible.

When you are abruptly plucked out of normal life, plunging into a life-threatening situation and not convinced whether you will make it out, isolated for more than a year and constantly navigating one crisis after another, there’s a substantial psychological impact. The thought of returning to “normal life” simply doesn’t seem possible. Suddenly you’re being reintroduced to a series of “firsts.” The first time I went to lunch with a friend, the first time I dropped Dean off at school without having to travel to Milwaukee afterward, the first time I had a normal family gathering without the purpose being reliance on their help — every seemingly “normal” situation felt foreign and strange. After going through day after day of literally everything going wrong that possibly could, you start to develop a skeptical “too good to be true” attitude when things actually go right. And when your life comes to a halt but keeps moving forward for everyone else, it’s hard to think about stepping back onto the moving track. And I’ll admit, it took a while to accept the luxury of re-entering these formerly everyday routines. 

There was one person who I knew without question understood this: Andy Dyer.

Andy has been my boss for five years, but truly, I feel like I’ve known him my entire life. He lives in St. Louis and we have a remote working relationship but there are fewer people I feel closer to than this man; he is truly more like family than a colleague. Something happened when he started at Ascension and we quickly developed not only a complementary working rapport, but also a deeply close friendship. He has traveled to Wisconsin to support my work in extra-curricular community endeavors and has made an effort to get to know Dave and the boys as if they were family of his own. He’s one of the most kind, compassionate and thoughtful people on this planet and I thank God for bringing him into my life — especially through this past year. Not a week went by that he didn’t send some form of encouragement and he also stood (metaphorically, of course) by my side while navigating so many complicated and fearful situations. He is truly one of the best. 

So to no surprise, when we all celebrated my ability to go back to work, Andy did what Andy does best: share grand gestures of compassion and support. Knowing the return would be a huge psychological adjustment, not to mention navigating a large-scale, fast-paced work environment after an entire year away, Andy flew to Wisconsin and spent an entire week with me to aid in my transition of “reacclimating” back to “normal” life. He went with me to my oncology appointment, we went to a chapel and prayed together, spent time with Dave and the boys, went to a brat fry with one of the Return to Nam vets (full circle since he flew up to attend the RTN premiere years ago) and spent a great deal of time talking through some heavy topics in addition to gathering with other colleagues for some beautiful reunions, as well. Perhaps my favorite part of his visit was one I wasn’t even a part of. We had a fish fry with my parents one night and Andy stayed late drinking bourbon with my dad. (If you know my dad, you know how out of character something like this is!). I later learned he had secretly planned to stay late all along to allow for a private discussion reassuring him of the support and compassion Daddy’s little girl would be receiving upon returning to a new work/life/health balance. 

Seriously… there are no words. And yes, I know how fortunate I am. ;)

Shortly after, I started reconnecting with other colleagues and joining team meetings again. My first time back with my beloved brand team had me instantly in tears. All 20+ members were dressed in pink, flooding my computer screen with support before we even had the chance to begin. I’ve always felt that who you work with means just as much as the work you are doing — and I’m so lucky to have a “work family” that feels just like that: a family.

So with that background, you can imagine my heartbrokenness when an announcement came a few months ago that our entire 200+ person marketing team would need to reapply under a new org structure. In addition to the fear of losing such great people to work with, of course, other practical concerns obviously included losing my income and benefits, knowing my insurance allows me to see the best doctors including those in Milwaukee, flexibility to leave for appointments, the comfort/balance allowed by a remote work environment, losing life insurance under a previous approval (through work), etc.. I’m optimistic about the ability to remain on board but am anxious to make things official and get this behind me. I’m just so thankful this didn’t happen LAST year.

How are the boys?

Dave — 
I’m so happy to see Dave in better spirits these days. He’s extremely busy at work and excited for some new opportunities ahead, and I’m grateful that I’m in a much better place to allow him the ability not to be stretched so thin. February will be the one year mark of learning about his brain aneurysm so we have a follow-up at Froedtert soon to make sure that’s still stable. We’ve also started an intensive nutrition program through Nutritional Healing and even though he’s going a little crazy with having to cut certain foods due to newfound allergies, we’re already seeing significant improvements. We started the program to ensure we were doing everything we can to maintain and improve my health, stabilize Dave’s Chron’s Disease and better educate ourselves to best take care of the health and nutrition of our family. We are extremely pleased with our experience so far and can’t say enough about the in-depth testing, knowledge and training we are receiving. We are truly learning an entirely new lifestyle, how to better understand and avoid artificial ingredients and the damage they cause, how to reduce and eliminate toxins, and more — all of which have been top of mind given my diagnosis was deemed environmental.

Dean —
It’s amazing to see how different Dean is today vs. this time last year. He has become so confident and mature in his actions and a fierce protector of his little brothers. I’m so proud of him for so many reasons and thank God he’s my firstborn! He understands I’ve had to go to the doctor a number of times but somehow I think we managed to pull everything off without him really understanding something was wrong. Going through something like this with three small children has been a challenge beyond words but I suppose the advantage is they were too young to understand or be overcome by fear.

Will —
This kid, OMG. His highs are high and his lows are low. Of all of our kids, Will has always been the biggest challenge. He has always had a harder time dealing with his emotions and navigating certain situations and no matter how hard we tried to provide as much stability as we could, he felt the effects of last year… HARD. He was up almost every night screaming for hours to the point where Dave and I were losing our minds and that’s just one example of how he was processing the disruption around him. When I look at him today, I just beam with happiness seeing what a better state he’s in, thriving in every way his big, charismatic personality demands. Of all my kids, I was worried about him most and seeing him in such a better place brings me relief and joy greater than I can possibly describe. And yes, we’re still up at night with this little guy… but at least now it’s manageable.

Cody —
It’s always with mixed emotions to think about Cody’s age because it, of course, marks my diagnosis and the abrupt traumatic change in our lives. But every day he grows older, I remind myself that I am, too. And that’s something we didn’t think was going to happen in the delivery room a year and a half ago. He will always be my little miracle. My big miracle, rather. And it’s just a surreal feeling being where we are today. Nothing about his first year was easy between everything going on at home and his own health problems. But I’m happy to report his breathing is stable and he’s a happy, busy, babbling little toddler. Perfect in every way.

Care plan & next steps
I’ve been taking oral chemo twice a day since May, along with hormone suppressants to block estrogen from binding to any cancer cells leftover in my body. No, I will not lose my hair again from this type of chemo and thankfully the symptoms are far more manageable than the 20 weeks of IV chemo I received last year. I’ll continue with oral chemo likely for two years and the hormone therapy for 10+.

I started physical therapy after my surgeries last December to help regain range-of-motion in my arms and manage lymphedema. Since I have had ALL of my lymph nodes removed on both the left and right sides, my body struggles to push fluid through my upper chest, arms and hands properly. When it becomes a problem, I wear compression garments and have special massage techniques that help get things back under control. My left arm is typically always a little larger than the right side, as a result of having to go into that side for a second surgery which affected the healing process on that side. I’m still working on range-of-motion but it’s drastically improved. Months ago, it was a struggle to do basic things such as adjust the rear view mirror. Now, I have pretty much full motion back on the right side and am about 75% of the way there on the left.

I had surgery again on November 14th and I keep joking that it’s incredible how much smoother things go when it’s not so major of a surgery and things actually go as planned. I had the chemotherapy port removed (MUCH smoother coming out than going in… ) and a hysterectomy (to remove estrogen-producing organs since this is an estrogen-based cancer). Pros: lessening the amount of estrogen in my body increases my chance of long-term survival. Cons: Less estrogen means high risk for osteoporosis, which already runs in my family. But let’s be honest… I’m just thankful to even be having that conversation. Before this surgery, I was having monthly injections to shut down my ovaries. Now I am in permanent menopause and am happy that the side effects have been minimal and my recovery has been smooth and speedy. (For once!).

A few weeks ago, I had a series of appointments that really hit me. As I parted ways with Dr. Kelly at Froedtert, she simply said, “Everything looks good. We will see you in a year.” I burst into tears as I met my dad in the waiting room as those words really sunk in. Thinking back to my original diagnosis and the so many obstacles that seemed to interrupt any chance of hope — to now even thinking of the concept of anything happening a year from now, let alone a hiatus from seeing a doctor… it just seemed unfathomable.

I spent the next day in Green Bay with my general oncologist. We recognized this appointment as the turning point from all that’s happened so far to now transitioning to monitoring/preventative care. So many happy tears with his team, too, recognizing the unconventional road we’ve been down and how different of a prognosis I have today vs. where we began. 

At this point, I’m going in monthly for blood work and a physical exam. It feels strange not to be doing scans to really see what’s going on, but I’ve learned through experience that not everything shows up to definitively prove anything and I also need to be very careful moving forward about how much radiation I receive. Even though it’s very targeted, I received the highest dose of radiation we could safely administer during my treatments at Froedtert and it was across a large surface area vs. other cases that just target one spot. I had 18 chest x-rays during my inpatient stay with the lung, alone. This combined with other CT, bone and PET scans accumulates to a lot. My oncologist says that he’s only concerned about the larger CT and PET scans, but it’s hard for me not to think cumulatively, there’s a consequence, too. The risk of heart disease down the road increases along with scarring on my lungs, but as my radiation oncologist clearly stated… the goal is to get there.

I’ve had a few people ask me if I’m “cancer free” now, so I guess I’ll address that here as well. The reality is, anyone who goes through this, especially a case that got as far as mine, will never know if they are truly “cancer free.” You’ve done what you can, you hope it worked, but in many cases, it’s just a matter of time before it comes back. You just hope it’s a long time. So the more accepted terminology is “no evidence of disease” and celebrating reaching remission — and praying every day that you stay there. I feel the same way about the term “survivor.” To me, that word means someone who has overcome something, who is on the other side of the obstacle that put them in jeopardy. But how do you ever know if you are truly in the clear? You don’t. I share this only to provide an understanding to others that I certainly didn’t have pre-diagnosis in hopes that it helps provide insight as to how others experiencing a similar circumstance may also be feeling. Perhaps my perspective will change over time (God-willing). For now, the reality is these are simply facts that you can’t ignore, but can choose to compartmentalize in an attempt to remain as optimistic as possible.

On that note, I want to be transparent about my mental health. It’s my sincere hope that most people know me as an optimistic, positive, cheerful, encouraging person who has dedicated her life to lifting up those who have fallen to a dark mental space through mental disparities or having experienced trauma. That’s who I’ve always tried to be and at my core, who I feel that I am. But behind the scenes, there are so many challenges I’ve silently faced throughout my life that I do not plan to talk about, however I need to acknowledge to make this point: everyone has bad shit going on in their lives — even the cheerful people. 

My whole life, I’ve been surrounded by people and circumstances that have created situations completely out of my control to fix and whether I wanted to admit it or not, affected me, too. So when I was diagnosed and the dominoes of my health crisis started to fall into every other part of my life, it simply became too much. Without knowing this background, several friends who had gone through breast cancer encouraged me to go on medication to help manage stress and fear, but of course, I was secretly used to taking on other deeply heavy burdens, so even though this was different, why would the approach to how I handle it need to be? But the truth is, it was. And I wish I would have come to that conclusion much sooner. But earlier this year, I went on antidepressants which has helped me to take the edge off and find my new balance. So, I share this openly because I hope others will recognize that it doesn’t matter how tough you are, how major or minor your problems may be, how big or how small your support network is, or how positive or cheerful of a person you are. Everyone has to find their balance and has a different capability of doing so. It’s ok to need help. It’s ok to ask. And it’s not ok to not be ok.

So with that… I promise I’m honestly doing really well. Truly, really well. I’m starting to feel more like myself and in many ways starting to understand who the new version of me really is. Physically, I still get very tired but that is improving over time as well. The lymphedema and other side effects are manageable and it’s incredible to me that for how harsh these treatments were, the significant complications that I endured and the simple fact that there was a deadly disease ravaging my body… that it’s possible to return to such a high quality of life. The body’s ability to heal, the talented doctors and their amazing skill and the grace of God are astonishing wonders.

Paying it forward
Odds are many of the people reading this know me from my extensive involvement in the community. So it’s likely no surprise to you to have seen me in a number of public engagements lately. Between Rock Cancer, Breast Cancer Awareness Month, Giving Tuesday and more, I’ve been asked to do a lot of public speaking. I’m happy to do it and I understand the importance of testimonials to support the mission of non-profit organizations, but it was certainly a different experience being on the other side of the camera. It was therapeutic in many ways, but it gets waring talking through the same hard topics over and over again so I think I need to take a break from further speaking engagements for a while.

Here are links to the recent speaking engagements I’ve been asked to do, if interested.

Spierings’s Cancer Foundation — Rock Cancer Prayer Service
Spierings Cancer Foundation — Testimonial
Breast Cancer Awareness Month — Focus Fox Valley with Haley Tenpas
Breast Cancer Awareness Month — Y100 
St. John Neupomucene Catholic Church — Fall Coffee
Just Jess Foundation — Giving Tuesday testimonial (part one)
Just Jess Foundation — Giving Tuesday testimonial (part two)

As long as my health remains stable, I have big plans for the next year or so to produce some major projects that will help these non-profits and engage the community in meaningful ways. (But you aren’t surprised about that one bit, are you?). :)

Perspective
With the new year upon us, I’ve been provided with pause to really reflect on all the new milestones I never would have imagined in my life. The one-year mark of my diagnosis, chemo, the breast surgeries, radiation, and more. 

I spent the one-year milestone of my lung surgery with Dr. Trocciola enjoying a beautiful picnic in a park and wrote a tribute about my deep gratitude for her here. I’ve come so far since that experience that I was even able to start playing in Vento winds again this fall. To my comments above about re-entering “normal” life and the strange feelings behind “first” experiences after everything that happened… I sorely underestimated how emotional my reunion to the wind ensemble would be. Walking into a rehearsal space for the first time since the pandemic hit, being surrounded by my section-mates and receiving their encouragement and support, recognizing how far I’d come to be here at all — not just because of the lung — and appreciating the gift of music more than ever before… let’s just say there were so, so many happy tears.

I’m happy to say I’ve been very intentional about making the happy milestones overshadow the darker ones. Dean’s first day of school was so different than last year and I’m now volunteering in his classroom instead of being afraid to enter it. Will and I had our first haircuts together at the same salon where Dave’s cousin helped me pick out a wig and manage things when my hair was falling out. And perhaps the most important milestone of all, celebrating Baby Cody’s first birthday meant everything and more. 

Perspective is an interesting thing. And I’m grateful I’ve been taught and have always fought hard to keep mine in the positive direction. 

This past year and a half, I’ve endured pain, suffering and fear beyond anything I’d ever imagined. But I also deepened relationships with so many people and witnessed unbelievable acts of kindness from friends and strangers alike. People who likely never would have crossed my path if it weren’t given these circumstances have now become some of the most meaningful people in my life. I’ve spent more time with my dad than ever before and dare I say we’ve become Milwaukee “foodies,” which never would have happened otherwise. We’ve proven that strong marriages can make it through anything if you refuse to give up. I’ve seen the depth of the innocence of my children and how truly important their love and dependence is to protect. I’ve experienced the unity of human spirit through all who banded together to help us through impossible times. And I’ve experienced a journey through faith that is impossible to explain, but also impossible not to have felt.

I’ve seen firsthand the value in the intentionality of actions and what it truly means to live a purpose-driven life. So even though I will have forever been changed, it’s important to recognize, it’s not all for the worst.