1 year, 4 months, and 6 days.   February 19, 2022, to today 6/26/23.
FOUR HUNDRED AND NINETY-ONED DAYS of treatment.

This entire post is dedicated to my incredible oncology care team at Froedtert, my friends, and my family who stood beside me literally and virtually.

There are many quotes on caring, but this is one of my favorites:

“As human beings, we each have a responsibility to care for humanity. Expressing concern for others brings inner strength and deep satisfaction. As social animals, human beings need friendship, but friendship doesn’t come from wealth and power, but from showing compassion and concern for others”
-Dalai Lama.

I also love this one:

“Never believe that a few caring people can’t change the world. For, indeed, that’s all who ever have.”
-Margaret Mead

FROEDTERT MEDICAL STAFF:

Mary Beth Shaw: Case Manager Extraordinaire.  Mary Beth Fast-tracked all of my appointments even before I arrived home to Wisconsin from Florida. She made sure that the scans that were done in Florida, were ready for my first appointment with Dr. Mueller.  She emailed me the night before my surgery to tell me she was praying for me and was confident I’d be fine. She worked tirelessly to get me into all of my pre-surgery appointments and when my surgery was complete, she visited me in the ICU. On my follow-up appointment 2 weeks post-surgery, she allowed me to collapse into her arms sobbing and reassured me that this was normal and that the steroids I was taking were wreaking havoc on my mind and body.  She recently sent me a bracelet engraved Tracht Gut Vet Zein Gut (Think good and it will be good). She has the most beautiful, robin egg blue eyes that sparkle. Thank you, Mary Beth. I love you dearly and could not have gotten through this without you!

Dr. Wade Mueller: Dr. Mueller was my primary brain surgeon. From the very first appointment, he made me feel comfortable and patiently explained that no two tumors are alike. He said he planned to keep the information he provided simple and assured me I’d get through the process. He is extremely funny and when I said we were so grateful to have him as our surgeon because he’s so well thought of and is so highly praised by everyone we spoke to, he simply shrugged and said “Well, you don’t have a lot of options.”  I needed someone like this as my surgeon.  I needed laughter and someone who didn’t make the entire ordeal feel endlessly grave. He’s also the one who told me at my follow up “You cannot will yourself to heal any faster than your body is able”.  I have replayed those words over and over during this past year and imagine I’ll be saying them well into the future.

Dr. Max Krucoff: Dr. Krucoff, or as I like to refer to him Miracle Max  (the miracle worker and medicine man in The Princess Bride) is, in my opinion, Dr. Mueller’s heir apparent. When Dr. Mueller met John after surgery, he excitedly told John “We did well.  Really well!” He said his colleague Dr. Krucoff brought some newer techniques to the table.  I later found out when reading my medical records that there was near GTR of the tumor. GTR stands for gross total resection and to have that you have to remove over 90% of the tumor. Dr. Krucoff is incredibly kind as well.  I vividly remember him visiting me in the ICU and always bolstering my spirits, telling me I was doing well.  These two surgeons were the first step in my treatment and I’m eternally grateful for their skill.

Dr. Christopher Schultz: Dr. Schultz is my radiation oncologist. He put together my radiation program to “kill” the rest of the residual tumor. He was very straightforward with me about the hair loss I would experience and handed me Kleenex on our follow-up visits when I’d cry because my hair was falling out.  But he never treated me with kid gloves and I’m grateful for that because it forced me to suck it up and move forward. I’m sad that he’s moving away from clinical practice, but grateful that I’m his patient because I’m “grandfathered” into his care.

Dr. Jennifer Connelly: Dr. Connelly took me on sort of last minute, as my oncologist when I felt a disconnect with my original oncologist. I will always be so grateful to her for this.  She is an incredible listener and quickly identified some mental health issues I was having on my first visit with her. She’s the one who referred me to the QOL (Quality of Life) team at Froedtert.  I’ve seen Dr. Connelly every single month for over a year and will continue to see her during follow-ups for years ahead.  She’s really helped me understand how important my labs are for chemo and has been a source of real encouragement when I wasn’t feeling well.  And has helped me process and understand the residuals I’m dealing with from treatment. For example, I still experience a left-side hand tremor if I’m stressed either physically, emotionally, or mentally.  Initially, I was afraid there was something else wrong with me, but she patiently explained that it takes the brain a lot of energy to compensate for what I’ve lost and there’s only so much to go around. So when I’m stressed, it pulls the brain away from keeping my left side stable.  She’s worked with me on dealing with all the bumps along the way and worked with me to resolve any issues be it physical pain or mental anguish.

Trish: I’ve come to think of Trish as my personal phlebotomist! I have tricky veins and am not an easy stick at all.  Trish has done my weekly labs for over a year and has worked around scar tissue and at times has had to find new veins to stick for my blood draw. In truth, I wish I could take her with me to do the IV’s I need for MRIs.  It’s never easy and inevitably I find myself consoling the poor techs who can’t get the IV in.  No one wants a cancer patient to suffer any more than they already are, so I feel bad when my body doesn’t cooperate with what they need to get done so the MRI will be successful.

Dr. Jessica Molinaro: Dr. Molinaro is my psychiatrist and works in the QOL center at the Froedtert cancer center.  I’ve spoken to my fair share of counselors over the years and I’ve never met someone who so effortlessly exudes compassion like Dr. Molinaro.  When you speak to her you can tell she really LISTENS to what you say.  She’s the one who had me get cognitive functioning testing done and put me on the lowest dose of Adderall so I could get my focus back.  She also provided me with energy saving techniques which I still use to this day.  She’s monitored my anxiety and depression and my Lexapro prescription.  She also hooked me up with Carrie my counselor.

Carrie Danhieux-Poole, LPC:  Poor Carrie…..she got the short end of the stick when she was assigned to be my counselor! She had a blubbering fool on her hands early on! Carrie had the task of helping me work through some serious childhood and young adult issues, including my death phobia. She had loads of practical advice for me and was instrumental in getting my emotions back on track. She’s super laid back and I love her style of counseling. I also love that I could do all of my sessions virtually!

Adam C:  batting clean up is my physical therapist Adam.  I first met Adam in 2021 when I was diagnosed with a left labral hip tear and left-side tendinosis.  Adam helped me regain muscle which helped decrease the pain I was in. Fast forward to this year and due to a combo of the pre-existing issues, as well as my prior left-side neglect and lack of mobility for the better part of the year, my hip is a mess! Once again, Adam has stepped in to help me.  He’s absolutely hilarious and makes PT bearable. This is really saying something because I LOATHE physical therapy.  LOATHE IT!!!! He makes it fun for me and gives me a hard time and makes fun of me, which I enjoy.  I just wish he wasn’t so popular because it’s hard to get in to see him.

I think I got everyone covered.  I cannot say enough about the care I received at Froedtert Cancer Center!

Next up, Family

FAMILY

I would be dead without my family.  Every single one of my kids stepped up to help at the worst crisis of my life starting with ….

Jack and Kayla: John called all of the kids while I was in the Cape Canaveral ER on Saturday morning 2/19.  Kayla and Jack were in Florida the next day.  Those two kids packed up our car with three months of belongings and our dog and drove everything back to Wisconsin for us. Then unpacked it all and got the house ready for our return home. Then Kayla spent the entire summer at our home in Wisconsin helping nurse me back to health. She planted all of my flowers, weeded the gardens, helped clean, and on one occasion picked me up off the floor after an episode of near syncope, called John, and said “Don’t panic, everything is ok BUT mom just passed out!” She and Jack made last summer so much better for me, just by being in the house.

Zakary:  When Zak got the news of my tumor, he left his job at the DEA and flew to Wisconsin to take care of the dog and our house during the week of my surgery.  He had a number of things going on in his own life at that time, none of which was easy. But he put that aside and flew down to help us out.  We will always be eternally grateful for that!

Katelyn and Tommy:  Just like when John had cancer in 2020, Katelyn and Tommy kept the wheels of the company turning.  They not only managed the New Berlin Store, but the many projects we had going on nationwide.  This is the second time they’ve had to do this in under 3 years.  All while Katelyn was pregnant with Vivienne.  We’d be broke now if it weren’t for them and their help

I have many other family members who texted, called, sent cards and letters, and visited frequently but I don’t have enough time or space to mention everyone.  Please just know that if you did help out, even by a text or phone call of encouragement, it’s noted and greatly appreciated.

My Mom:  I think the only thing worse than having a spouse who’s sick is a child.  It doesn’t matter how old your child is, when they’re sick, YOU feel like and there’s no other worry worse than that of a sick child.  But my mom never flinched.  If she was scared, she didn’t show it.  Once again, she showed me how to navigate pain and suffering and keep my head up during the hardest times.  She also happens to be an incredible seamstress.  Thanks to her talents, I had the coziest white 100 percent Terry cloth cotton robe to curl up in, all year long.  There were plenty of days this past year that I never got out of that robe.  It made a huge difference to me to be wrapped up in something so comforting when I was feeling my worst.  Thanks, mom!

FRIENDS

First of all, There is simply no way I can mention every single friend by name in this post.  So here is a general HUGE thank you to those who did the following:

Our Holy Apostle and Catholic Memorial Families set up a meal train for when I was in the ICU. Everyone who sent cards and prayed for me and put me on prayer chains. Friends who called/facetimed, and texted frequently.

There are some friends I need to mention who went above and beyond.

Frankie Flandreau:  Frankie is our friend who was with us when I had the seizure at the breakfast counter.  I actually remember when the seizure started but don’t like to think about it.  I remember looking at my left hand which had seized up and thinking “Why can’t I open my fingers?” and also realizing I couldn’t speak.  I remember trying to grab the counter with my right hand so I wouldn’t fall because I was tipping over to the left.  The last thing I truly remember is Frank looking at me and saying “Are you ok??” And then, like I was in a tunnel, I heard John yell “FRANK! GRAB HER!!”

Poor Frank! I think that horrible episode will always be seared into his mind.  I can’t imagine what it’s like to watch someone go into a full-blown full-body tonic-clonic seizure. To his credit, Frank did catch me. Had he not, I’d probably be dead as I would have cracked my head on the tile floor. However, my friend was so panicked he couldn’t dial 911 !!  While it wasn’t funny at the time, we laugh about it now.  He had to run next door to his wife Donna and have Donna call 911.  I love you, Frankie and Donna!

Laura Anderson: Shortly just before and after my surgery, Laura called and asked if we wanted her to bring us communion.  Given I was recovering from surgery and considered immunocompromised from all the steroids I was on, we were watching the weekly mass virtually.  But Laura provided what I TRULY needed at the time. The Body of Christ.  It was beyond comforting to me to have that at that specific time.

Amanda Analla:  Unfortunately, I’m writing this portion of my post on the one-year anniversary of Amanda’s death from a rare and aggressive form of lymphoma. However, before she died, I was fortunate enough to rekindle our relationship which consisted exclusively of FaceTime conversations.  I was just out of the ICU and she was back in the hospital for complications she was having and we started sharing our crappy journeys on an almost daily basis.  Amanda got me through the making of the radiation face mask ordeal, which I was absolutely terrified about.  She was the one who told me to ask the techs to cut holes out for my eyes and mouth and nose if needed so that I’d feel less claustrophobic.  The radiation for head and neck cancers is brutal. You have this custom mask made so it fits super tightly on your face and it’s literally snapped into the table you’re laying on.  You cannot move during radiation because it’s so specific. This is why the mask is made. It prevents the patient from moving at all. For someone like me, it’s a nightmare! You cannot get up, even if you choke on your own spit.  Of course, that’s all I could think about, but sweet Amanda assured me that wouldn’t happen and she was right. We also cried quite a bit over FaceTime.  I still miss her laugh and rascalesque personality!

Therese Balistrieri:  Therese is a fellow prayer warrior and made sure to let me know when she was headed to Holy Hill and brought me back Holy Water and St. Peregrine prayer cards.  By March of this year, I was well enough to go with her to Holy Hill and pray myself.  This unending prayer support was such a comfort to me and has made me realize how important it is to continuously pray for the ones we love and to let them know we’re praying for them.

Donna Rivard:  Donna was my first physical visitor after surgery besides Laura.  Donna’s sister, Chris, had the same brain tumor I have/had over 20+ years ago! Sharing her sister’s story with me, buoyed my spirits and helped me realize that no one could possibly tell me how long I had left to live! Donna is also a person of extreme faith.  She gave me a little book with inspirational paragraphs and scripture verses for a variety of circumstances (ie; anxiety, troubled mind, peace, etc). She also kept in very close contact with me via text and constantly reminded me of God Pings. Donna is a true servant of God and mothers everyone in her life. I’m blessed to consider her to be one of my true Soul Sisters.

Terry “Ter Bear” McGill, Don “The Chairman of the Board” Evans, and Tracy “Why don’t I have a knick name for you” Wunrow:  If I’m not mistaken, these three read every. Single. Caring bridge. Post.  EVERY ONE! And they also commented on almost all of them.  While I never posted for any sort of acknowledgment, it meant so much to me to see that people were reading my words and following my journey.  Thanks, guys. You mean the world to me! Trace….let’s work on that knick name for you….

Beth and Bob Dummer: Beth and Bob are our neighbors. I”m ashamed to admit that for many years none of us got along.  When I think back on it, everything we complained about was so petty and stupid!  Last summer, I made the mistake of walking out to our Southside garden in my bathrobe because Kayla wanted to show me all the work she did on the raised (though crumbling ) bed.  I say mistake because at this point, I had lost all the hair on the top of my head and what was left was just this scraggy, graying, dried out mess mullet type thing.  Bob happened to be tending to his own garden and saw me.  I found out later from Kayla, that when we walked back into the house, he approached her and asked if I was ok.  Kayla explained what we had been going through.  From that point on, Bob took over our gardens.  Late summer, he trimmed all of our trees.  He did backbreaking work to re-do the bricks in the raised bed, and before  winter, he planted at least a dozen HUGE bright pink tulips.  This spring he’s continued to place the brick edging and more recently hacked out this stinky, awful overgrown bush by hand.  He refuses to be paid for his labor.  In short, he and Beth truly live out the gospel of “Love your Neighbor as yourself”.  He’s definitely stored up some serious treasure for himself in heaven,

Carla “Bebe” Scholz: We’ve been friends for 38 years! Carla has texted me and/or called me every single day since I’ve been out of the hospital.  Memes have been sent that have been so funny, I could not help but laugh until I peed my pants and snorted. We’ve basically bitmojied each other to death (which I love) and can communicate with meme’s and emoji’s alone.  When we were in college together, we used to try and have conversations using only idioms.  Now, instead of idioms, we use memes!!!!!  Not only that but Carla, who is the CEO and Owner of her own nationally recognized Website and Graphic Design Company (Accent Graphix Design Studio) is the one who created my blog site THE PATH.

I could go on and on about Carla but this is already a very long post and I still have to address my husband,

JOHN:  My best friend. My husband. My protector. My biggest Advocate. I still tear up thinking about the terror on your face in the ER, when the thoughtless doctor tossed the CT results on my lap which said “suspected malignant brain tumor”.  I know (because I myself went through this when you were sick) you’ve spent countless hours behind closed doors worried about me.  I could not have gotten through this without you!  From the moment we got home until today, you’ve taken exquisite care of me.  I sometimes forget that I wasn’t even able to get out of bed alone for a while because I was so weak.  But you sacrificed your own comfort and sleep to make sure I was ok.  You made every single meal I was hungry for and mastered so many dishes along the way. While many would think that’s what a spouse is supposed to do, let me tell you that NO ONE wants to be sitting in the radiation oncology clinic every single day for 6 weeks.  It’s depressing as hell! And for someone like John, who had to go through radiation himself, it’s triggering for PTSD.  But he NEVER complained. NOT ONCE!  Every single day he’d pack me up and take me to radiation and then come home and make me an early dinner because I had to time my food so I could take my nausea meds before the chemo.  SIX weeks of this!!  So NO, most spouses never have to even think about this,  much less do it and never complain.  It’s definitely gotten easier over the year as I’ve recovered but there are still limitations to what I can do, and I still have moments where I wonder, how much will I get back? But John has always been both beside me holding my hand, or behind me pushing me forward (while grabbing my ass LOL).   He recently said something to me that struck a chord. He said, like the precious metal gold, our marriage has been refined and purified by the fires of the cancers we’ve had to endure.  Something about that really made me happy and increased the gratitude I have for God and his knowledge of what the two of us needed in our relationship.  Like all marriages that make it to 20+ years, we’ve had our ups and downs. While we’ve obviously worked through our issues, I once said to John that I wasn’t so sure he’d be able to care for me as I cared for him when he had cancer.  I was right.  He’s done a MUCH better job than I did as a caregiver! There aren’t enough words or ways for me to express the Love and gratitude that I have for this man.  He took his marriage vows very seriously and lived up to the “for better or worse, in sickness and in health” part.  I do feel like our love has been ridden of all it’s impurities and we are entering our golden years together.

Finally and always my number one is God the Father, Jesus His Son, The Holy Spirit, and Mother Mary – While watching a video on voice work for singing and piano playing, a voice coach on YouTube stressed the importance of Middle C.  For those not familiar with music or the piano, middle C is considered the foundation note for those learning music. While technically it’s not in the exact middle of the keyboard, it’s close enough and it’s what most people go back to when trying to figure out another note in the music. I realized that God is the Middle C in my life.  He is my foundation.  He is where I turn to when things are good or bad. He is where I return to if I’m lost and cannot find my way. My faith is what has carried me through this taxing year. God granted me peace of mind beyond explanation shortly after I was diagnosed.  To this day, I still can’t explain it.  It was like nothing else I’d ever experienced.  I just knew in my heart I’d be ok.  And it turns out, I am! It’s been a year of opportunities to grow in both my faith and gratitude for my life and those who are part of it;  I’ve learned that trusting God with my cares and concerns is the best way to handle life. I’m so grateful to my mom for raising me in the Catholic Faith.  I realize many people have an ax to grind with the Catholic Church and it’s not without warrant.  However, the sins of the people who’ve committed horrible acts under the guise of the church aren’t what the true Catholic faith is about. My prayer is that those who’ve fallen from their faith or find themselves in the “none” category will turn back to God, whether via the Catholic Church or any other way.  Having my faith community saved my life along with everyone else listed above. NEVER underestimate the power of prayer.

I’m happier now than I’ve ever been and am so incredibly grateful for my life.  NONE of this would be possible if I hadn’t gone through this trial.  Life will always be filled with uncertainty and often heartache and pain.  But the key is to not give in during those trials. If I can impress anything on any of you after this year it’s this:  DEVELOP your faith life and really REALLY work on your relationship with God. HE WILL NEVER FAIL YOU! YOU are never “too far gone” to have a relationship with Jesus. NEVER! In fact, if you find yourself on the wrong side of the moral tracks, that’s exactly when you need Jesus the most.  He came for sinners, not saints.  I was completely unworthy of all that He’s given me in my life, yet I’m still here. Happier and stronger than ever!

As I mentioned before, this is not the end of my writing.  It will be the last post on my CaringBridge.  So if you’d like to continue following me and my escapades through life and banter every now and then, please follow me on my blog The Path.  All of my caring bridge posts have been transferred over to the blog. But from here on forward, that’s the only place I’ll be publishing new material. The link is attached.

LOVE  AND BLESSINGS TO ALL OF YOU AND THANK YOU!!!

Julie