A Note to My Mom: August 18, 2021

When my dad asked me if I would be willing to say something today, my immediate reaction was something along the lines of… “Are you kidding me?!  Not me!  Have you heard me speak publicly during an emotional situation?  That is NOT happening…!”  But then he said that I could write something for someone else to read, which I figured would be much easier.  I told myself that this is definitely a task that I am capable of completing, especially with someone to stand in the gap and do for me what I know I cannot. 

But the reality is, it’s not any easier.  None of this is easy.  Nothing about death is easy.  I think it is one of the hardest things our hearts and minds have to endure on earth.  In this moment, I’m at a loss for where to even begin.  How am I supposed to say anything of significance about her in these moments?  My brain is foggy and my body feels like it is on autopilot…simply moving through motions.  I have been staring at a computer screen for hours now, trying to decide how I can best honor her...make her proud of the words I have to say about her. 

Perhaps I will try to share my thoughts in the form of a note to her…

Mom,

I can’t believe we are here in this place today, and you are not.  I can’t believe this is how your life on earth ended.  I am so sorry.  I am so sorry for all of the pain your body has endured for so many years.  I wish I could have taken it all away for you, all the years of health problems.  I wish I could have erased all of the cancer from your body.

I don’t really know how I am supposed to reflect on my entire life with you in such a short window of time.  There are so many memories.  So many stories.  So many amazing experiences we have had.  So many things I have learned from you. 

You were, without a doubt, the most thoughtful person I know.  You were ALWAYS thinking of others, even in the midst of your own health struggles.  You always had a pulse for the needs of others.  You went out of your way to send carefully picked out Hallmark cards to so many people.  You always had a pile of cards stacked on the counter or in a basket on your desk to be sent to someone.  I know it made you smile that I, too, fell in love with Hallmark cards, and that I, too, have a bin full of them, ready to pull out when needed. 

Gift giving came naturally to you.  You loved to buy special gifts for people.  You had a knack for making others feel special because you paid attention to every detail.  I think this is something that comes naturally to me because I watched you do it for so many years.  Thank you for modeling selflessness and kindness to me. 

You always went out of your way to make things special for us, and later, for my kids.  It was the little things…things you may not have remembered, but things I will never forget.  Every day that I took my pink Minnie Mouse lunchbox to school, you carefully and meticulously taped a quarter to the inside of the lid for my milk money.  Something so silly, and honestly, so mundane (milk money, for Pete’s sake), is one of my most treasured memories, because it represents so much more than milk money.  The amount of time and energy it takes to do things like that demonstrate care and love, something I understand now more than ever as a mom myself.      

I love that you wrote my name on all of my school supplies.  I still have several of them (…I may or may not be a hoarder…).  I look at my Caboodle from grade school and love that it has your handwriting on it.  Something I will cherish for the rest of my days.   

You taught me to take care of my things.  Not in a materialistic way, but more of a “be a good steward” way, and I am trying to do the same with my own kids. 

There was a time in elementary school when I was excluded from a group of girls during inside recess because I didn’t have a Troll.  I remember getting into the car after school, and in tears, explaining what had happened.  We drove straight to Osco Drug, where you bought me a Troll doll.  Not in a spoiled kind of way, but in a caring and compassionate way, because you couldn’t stand to see me heartbroken over something.  I hope I can pay attention to my kids in this way, and provide for them in those formative moments the same way you always did for me.   

We had so much fun going on shopping trips together, whether here locally, or making the drive to Springfield or Saint Louis.  I’ll always remember going to your doctors’ appointments in Springfield, and then getting lunch at the mall and shopping for a while before driving home.  It’s funny because now, when I go to my own doctors’ appointments at Mayo, I tend to do the same thing…add something light and trivial to the otherwise heavy and hard appointments. 

I will always remember our short drives to Junior High, listening to Paul Harvey before school, and knowing, based on where he was in his short broadcast, if we were late or not J

I will always cherish our late night wrapping sessions on Christmas Eve.  You were a perfectionist.  We all know that I got that trait from you.  I loved preparing for Christmas Day with you, and picking out the perfect wrapping papers for each gift.  Our whole family always joked about the amount of tape you used, and that we could always tell which gifts were wrapped by you because they were nearly impossible to get the paper off.  Don’t worry.  I will carry on your wrapping traditions…staying up late the night before Christmas or a birthday and getting everything put together.   

Now that I am a mom, I understand just how much you sacrificed so that we could do the things we did.  You were a chauffeur for such a long time, running here and there for piano, dance, music lessons, school events, church events.  Goodness, I know it had to have been exhausting!  But I know you did it because you loved us so much.  You never missed a piano recital, a dance recital, a flute recital, a marching band show, a musical or concert.   

Mom, you always showed up for me when I needed it most.  Before Finley was born, and I was paralyzed with anxiety, you came to Florida almost a month ahead of time and helped me wash all of her clothes and get things ready.  You helped me iron a million quilt squares, and you did it with a smile on your face.  You stayed after she was born and helped take care of us.  The craziest thing is that you did all of this again almost three years later as we prepared for Kenton’s arrival.  You stayed after he was born to take care of us again, and even extended your trip because of an emergency surgery!  In hindsight, I know you did all of these things while experiencing your own pain and health issues.   

Mom, you gave me a nearly perfect childhood, one I cherish so much.  You protected my innocence and helped foster my creativity.  You let me be little, but supported me as a I grew up. 

Mom, I don’t know if anything that I said was eloquent or meaningful, but I hope you know that many of the best things in me came straight from you.  I’ll keep trying to show kindness and love to my friends and to those who are hurting.  I’ll keep trying to be thoughtful and generous.  And I’m going to continue to pay attention to the details in my kids’ lives, because at the end of the day, they matter.  And one day, I hope they’ll look back and know just how much I loved them, just like I know how much you loved me. 

And don’t worry, I have lots of Scotch tape at my house…everyone will think they are getting one of your wrapped gifts because I will go heavy on the tape, just like you J  

I Believe in Miracles

 Let me start out by apologizing, AGAIN, for consistently being inconsistent.  I have sat down to write this update so many times, and it just never felt right.  Not really sure why, but that has been the situation for quite some time around here.  

2020 has been so many things...seemingly impossible to navigate, blessings in disguise, ups, downs, and all of the in-between.  I have never been one of those die-hard, must have a SINGLE word to use for their year, kind of person.  But this year, I kind of penciled in the word MARGIN as my word.  Margin in my schedule, margin in my personal boundaries with time and people, margin to allow for growth.  I genuinely believe that having to quarantine and being in lockdown for nearly 75 days truly helped my body experience margin.  While I was battling new medication side effects of insomnia and anxiety, I was still able to REST, something that I really struggle with.  

I left off sometime back in May.  I know.  Again with the inconsistencies.  Ugh.  I'm sorry.

Friday, May 29, 2020 - My sweet friend, Emily, met me at my house very early that morning to make our drive to Mayo.  I had an early morning MRI that coincided with my trial mate's first injection.  I was finally going to get to meet her, and C0V1D wasn't going to stop that.  We had to do the whole temperature scan/mask thing when we got to Mayo.  At first, Emily's temp was a little elevated because we had been standing in the sunshine, but thankfully with the second scan, they let her in :)  I had the MRI first.  Just like every other time, the IV situation was rough.  My nurse, Rita, was so sweet.  She was nearly in tears on my behalf because, yes, I cried again after so many sticks.  She did everything she could to make the process easier...warm towels, heat packs, the works!  We made several attempts which then led to weeks of a sizeable bruise on my arm.  If only my veins were more bulging!!  The girl running the MRI was named Emily, which was easy to remember for me that day!  For whatever reason, the contrast makes me feel yucky during and afterward.  Thankfully for this day, we were going to meet my new friend and have lunch together!  

Jennifer was ABSOLUTELY AMAZING!  Besides the fact that we are medical soul sisters, we genuinely had things in common beyond the Desmoid Tumor conversation.  The three of us enjoyed a delightful lunch together at Blaze Pizza :)  It was so refreshing to have someone who FULLY UNDERSTANDS this journey.  I have incredible friends and family who work very hard to keep up with the saga of my medical madness, but with Jennifer, it was easy peasy because she just GETS IT.  Please keep her in your prayers while she is on this trial journey.  Her injections are over at this point, but the trial and the measurement scans will continue for a full two years.  

After lunch, we returned to the clinic for my appointment.  As I've mentioned before, this place is a very well-oiled machine.  Scans in the morning with an immediate turnaround of results.  Real-life Grey's Anatomy.  But on this day, the radiologist who typically studies the scans for this trial was not there.  I met with the orthopedic surgeon instead of my oncologist for this visit.  I had raved to Emily that he was so kind and thoughtful and genuinely listened to my concerns.  My oncologist is wonderful, too, but our visits have historically been a bit more disjointed.  I'm not sure if it was because he had a full clinic because it was a Friday, or if the clinic as a whole was just BOGGED DOWN because of C0V1D, but my appointment was rather abrupt and short.  

First, a new clinical trial coordinator nurse girl came in...Lauren.  Every visit involves a small stack of paperwork that is repeated each time.  Survey questions, questions about pain, questions about limitations, etc.  No sooner had she entered and began this process, a new intern guy I had never met before came in.  He started by recounting my history...somewhat inaccurately, but oh well.  He was trying to get up to speed with where I had been and where we were trying to head (tumor free?!?).  Shortly after he had come in, the doctor was there!  I hadn't even answered the first page of my packet!  Now, normally, for these visits, I take my handy dandy little journal in with me and have ample time to line my pages with my medical-themed washi tape (NERD ALERT) and put a heading on my page before anyone ever joins us.  Today, not so much.  I HAVE to take notes during all of our medical appointments because my brain just can't keep up.  Too many details, too many questions, and then the inevitable blur after an appointment.  This journal helps me keep some semblance of sanity.  

Well, NOT TODAY.  My doctor was very rushed.  He informed me that based on the initial reports of this scan, my tumors hadn't done anything remarkable either way...no growth, but no new shrinkage either.  It wasn't the final read of the scans, but basically, that was it.  He seemed more concerned about a comment I had made about pain in/on/near my tumors.  I had told him that I had woken up several times with shooting pains in recent weeks/months.  He was very interested in this and offered that I could see a pain specialist.  I really didn't find that to be necessary, especially since this pain has basically been there since 2016.  Sure, its intensity has varied over time, but overall, I'm in pain at some point during each day...no need to go see a pain management doctor at this point.  

And that was basically the whole appointment.  At one point, maybe TWO minutes in, I had reached down to grab my notebook to scribble down some notes, and he told me to stop...that I could read his notes later...it was seriously so bizarre and not his typical behavior.  I blame C0V1D.  

Emily and I packed up and headed south for the evening.  We managed to catch an accident on I-95, which had us creeping at 5 mph for nearly two hours, then tried to take a different way home, which then put us at the intersection of some serious storms.  All in all, a two-and-a-half-hour drive turned into over five hours!  

Over the next several days, both of the doctors from the trial were calling me about this pain issue.  They wanted to do nerve studies, pain treatments, and pain assessments.  One of the assessments involved a procedure of some sort that was ultrasound-guided to determine the source of the pain and to find out where my nerves come into play here.  It all happened so quickly.  I felt incredibly pressured to drive back to Mayo so quickly for something that I wasn't really interested in doing.  It was a lot of phone tag back and forth between their nurses and the trial nurse.  It felt very complicated and so random.  Why, all of a sudden, were they so hell-bent on changing this pain?  After two days of intense "run around" on the phone, I finally said that we didn't need to do this...that I could handle the pain, and that if I decided I couldn't do that any longer, I would look into pain management.  It was seriously SO WEIRD. 

Friday, June 12, 2020 - STIM Test with my endocrinologist.  My ENDO had wanted to see if the stimulant I had started taking at the onset of quarantine was doing anything for my system.  My labs had improved slightly, so she was intrigued.  I drove to their office very early that morning for the hour-long "procedure."  This is the procedure where they draw baseline labs, then inject me with ACTH hormone.  After 30 minutes, they do another lab draw, and again after 60 minutes.  The goal here is to see what my body does with the straight dose of the hormone.  Does it produce cortisol?  If yes, how much?  This sounds crazy, but I almost enjoy the solitude of some of these tests!  I sat there quietly listening to music and reading.  It was almost like a mini-vacation!

Thursday, June 18, 2020 - Today was the day I found out the results of the STIM test.  I had a telehealth appointment scheduled with my endocrinologist.  She logged into the app, and dove right in.  She said she wanted to review my cortisol levels at each increment.  She paused for a moment, and then looked at me through the screen and said, "You're not going to believe this...first of all, you actually had a baseline reading of cortisol.  Second of all, the desired reading at 60 minutes is greater than or equal to 18.0 units...your level was 17.9!"  SHE WAS COMPLETELY SHOCKED!!!!  As was I :)  This was SERIOUSLY a miracle.  At this point in the journey, I had been on steroids for an entire year with no change in my body's ability to sustain its own cortisol production.  We had tried weaning once, and it had been a nightmare.  All of the endocrinologists at Mayo were convinced I would simply be on some dosage of hydrocortisone for the rest of my life.  My favorite functional medicine doctor had told me that at this point, it would take a miracle for my body to do something different because it had been so long, and biologically speaking, he felt my body was beyond the point of return.  My first endo had completely given up hope that my body would ever produce cortisol again.  AND HERE WE WERE...CELEBRATING THAT MY BODY WAS ACTUALLY DOING ITS JOB!!!!!  I got emotional.  This was HUGE.  I even texted my doctor because I knew he would rejoice with me (which he absolutely did).  I told him that we still worship a MIRACLE WORKING GOD because he was/is actively working miracles in my body. 

My endo and I mapped out a VERY SLOW titration plan for the steroids. Instead of cutting it out hard and fast, we decided to stretch it over the course of the next three months.  Clearly, it hadn't worked before when we tried to cut it last Christmas.  I had told her we were planning to travel in August, so we adjusted the dosage for the trip, too.  The plan was to check in right before our RV/National Parks trip and see how the weaning was going.  

I won't lie.  While it was SIGNIFICANTLY BETTER than last December, weaning off the steroids was rough.  Lots of dizziness.  Lots of headaches.  Lots of body temperature ups and downs.  But, I kept reminding myself that I did NOT want to live a life dependent upon steroids, and that helped me push through the days when I simply had zero energy and felt like crap.  

Monday, August 3, 2020 - I had my labs repeated one more time before our trip.  The ladies at my Quest know me now :)

Friday, August 7, 2020 - Telehealth visit with my endocrinologist revealed that my baseline cortisol was still low, but it was still existent.  We decided to freeze my titration schedule and hold steady for a few weeks so that I could travel as comfortably as possible.  We also discussed the potential need for stress dosing...adding extra doses if I just can't hack it, or if I feel like I'm getting sick.  

Thursday, August 13, 2020 - Sunday, August 30, 2020 - BUCKET LIST TRIP OF A LIFETIME.  We spent 18 fun-filled and schedule-packed days traveling the Wild West.  Arizona, Utah, California, Nevada, Wyoming, Montana, and Idaho.  Seriously, one of the most amazing trips I've ever been on.  And I was able to be present and participate 95% of the time!  We experienced the Grand Canyon.  We hiked trails in Zion National Park, including the Narrows.  We hiked down into Bryce Canyon.  We hit Yosemite, Grand Teton, and Yellowstone.  And I made it through all of that excitement without truly crashing!  MAJOR MIRACLES AND BLESSINGS!

Sunday, August 30, 2020 - I chipped a tooth upon our arrival into Orlando...on a Tic Tac, nonetheless.  I can't make this up.  

Tuesday, September 1, 2020 - Emergency dentist appointment.  I had a terrible reaction to the epinephrine.  This was a fascinating experience because it was so closely tied to my adrenal system and hormonal sensitivities.  I learned the hard way that I can no longer have that injected into me without fairly severe side effects.

We spent the rest of the month traveling and doing family things.  A trip to Indiana/Illinois, a baby shower for my sister-in-law, and then a Williams family staycation at a large resort home near Disney World.  

Monday, September 28, 2020 - Upon our return from the "Big House" as our kids call it, I didn't feel quite right.  I couldn't really eat, and I was just plain exhausted.  I chalked it up to being too busy and just needing to rest.  

Tuesday, September 29, 2020 - When I woke up and stood up from my bed, I couldn't stand up straight.  My whole midsection felt tight and very sore.  It was bizarre, but I just chalked it up to perhaps female issues (sorry, TMI).  I missed work that day and literally spent the whole day in my bed or in a hot bath.  

Wednesday, September 30, 2020 - Same issue when I woke up.  I literally couldn't stand up straight.  I then started thinking I had C0V1D.  I decided I would just ride it out and it would work itself out.  I still couldn't eat anything, and literally slept all day.  No fever.  Just intense stomach cramping and the inability to stand up straight.  

Thursday, October 1, 2020 - At some point in the middle of the night, I woke up with a smashing headache.  I took some Tylenol for the first time in days and went back to sleep.  I woke up a few hours later completely saturated in sweat.  My whole bed was soaking wet.  Clearly, a fever had broken.  When I got up later that morning, my dad wondered if something else was possibly wrong.  I debated whether or not I should call the doctor.  He was worried that I was convinced it was C0V1D when in reality something very wrong could have been happening under the surface.  That notion kind of scared me, so I called my doctor.  They were able to squeeze me in with the Nurse Practitioner that night at 6 pm.  Heath was able to get home from baseball in time to drive me over there.  I was barely able to sit up for the doctor.  I literally climbed up on the exam table and just lay there.  They did a rapid urinalysis that came back off the charts.  She was convinced I had a complex UTI that had spread to my kidneys.  She suggested we go to the ER for faster access to a CT or MRI.  So, we did just that.  After a very uncomfortable five hours in the ER, and after a crummy IV and easy CT scan, it was determined that I had appendicitis.   I cried at the thought of another surgery. I think it was worse because the thought of my appendix being the culprit had never even crossed my mind.  When a surgical resident came to my triage area, I knew something was up. He explained that they didn't think it had ruptured, but they needed to operate the first thing in the morning.  I tried to get all of these various people up to speed with my complicated medical history.  Unfortunately, none of them was too concerned with my Desmoid Tumor situation or previous surgeries.  I spent the night in the hospital, sleeping with the assistance of some morphine!

Friday, October 2, 2020 - I woke up feeling anxious about the surgery.  No one seemed interested in getting my medical records from any of the previous surgeries.  I had to alert every person who came into my room that I was recovering from steroid dependency and that I was only a week or so steroid-free.  That was critical information for the anesthesiologist and the surgeon as well.  I was told I would have one surgeon, but at the last minute, a new doctor appeared!  It was a crazy experience all and all,  and just the whole hustle and bustle of being prepped for surgery, but I had my appendix removed that morning.  It was a very complicated appendectomy because of my surgical mesh and the abundant scar tissue all over my abdomen.  And, naturally, my appendix had not only ruptured but had grown an abscess, which guaranteed me several days in the hospital to watch for infection and to stay on IV antibiotics.  It was tough, I won't lie.  It was also very lonely.  Thankfully, the hospital's rules had JUST changed, and I was able to have two guests per day.  Heath was there every day at some point; my mother-in-law had come to visit; my friend, Emily, took one for the team and came to help me get cleaned up in the hospital.  My brother-in-law, Spencer, even acted as my personal and private Uber Eats Driver and delivered lunch right to my hospital room. :)

Having another surgery was not IDEAL, but it was necessary.  And while surgery is never desirable, I'm amazed at the timing of the whole ordeal.  All of our big plans had already come and gone, we weren't traveling, and I didn't really miss any big event because of the surgery.  God protected me from so many other possible outcomes.  The fact that I was lying in my bed for several days with a ruptured appendix is a miracle in and of itself, as my doctors told me afterward.  I'm glad it is over!  At this point, I no longer have any organs that should need to come out spontaneously or emergently!  

I spent the next two weeks recovering from the surgery.  My parents came down for a week to help me with the kids!  Wonderful friends brought meals to us.  My kids were well taken care of by Jolene and my parents and other friends.  We are so blessed. 

Tuesday, October 20, 2020 - Nearly three weeks post-op, and a mere 36 hours after an unexpected financial blow, I found out that Finley was awarded an incredible scholarship through the state of Florida.  I had applied for this scholarship way back in March...GOD'S TIMING IS PERFECT!

*You might be wondering why I included that little tidbit, but it is just so helpful for me to document these God moments.  Some may seem small, but others are so GLARINGLY OBVIOUS that His fingerprints are all over them.  I have to keep watching for these God Stops.  They remind me of His faithfulness in my life, and I can't help but share about them!

And here we are...Tuesday, December 1, 2020.  For those who are keeping track, my clinical trial with Mayo is nearly over.  I will be returning this THURSDAY, December 3, 2020, for my final trial MRI.  We will find out what these little tumors are doing.  I'm confident they are still there.  I can feel them.  The appendectomy seemed to have "angered" the Desmoids.  They have been highly sensitive since the surgery and have been flaring if you will.  Lots of pain and irritation around them. 

Please be in prayer for this appointment.  I don't know what's next.  When we signed up for this trial two years ago, some of the other options on the table were chemo, radiation, and cryoablation.  I have no idea what they will say on Thursday.  I'll be seeing the oncologist this time.  If he feels like we need to keep treating them with something other than these steroid injections, we will have to make another treatment plan decision.  I'm not sure I'm ready for that.  I have been able to keep myself SUPER BUSY these last few months, so I haven't had time to allow my mind to even go there :)  

"Therefore, do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own."  ~Matthew 6:34

That's where we are right now.  Just riding along in this holding pattern still.  If you made it this far, kudos to you.  It was a lot!  Thanks for checking in with me, praying for me, and encouraging me.  

Thanks for being here, friends.  We could not do this without you.   

A Really Belated First Update of 2020

Thanks for being here, even when I am so inconsistent.  I kind of left everyone hanging back in DECEMBER, and life just hasn't really let up until now.  I have started and re-started this post multiple times since my last visit to Mayo.  I know I have said this before, but I really struggle to write these updates sometimes, especially when there are much larger/heavier problems going on in the world, and I'm not even talking about this global pandemic we are all experiencing.  Friends are losing loved ones, losing jobs, losing children...this feels really trivial in the grand scheme of things.  However, I have had multiple people reach out and make sure they hadn't missed an update, so I decided to go ahead and get on with it :)  Also, these posts are incredibly precious to me because they are a constant reminder to myself of God's faithfulness.  There are days I lose sight of that, or days when I forget the beautiful details of this journey, and when I come back to these journal entries, I am brought back to what I know...that God is faithful, even when it feels so scary and bleak.  Thanks for your love, support, prayers, and encouragement on this journey.

I'm going to rewind to that last visit to Mayo.

Tuesday, December 3, 2019 - We arrived at the hospital for my MRI before 8 am.  Today was the first time I experienced their brand new Radiology Suite in a different building.  Jolene set up camp in the waiting area, and I got called back almost immediately.  My first nurse, Kelly, was the lucky one to deal with my veins on this lovely day.  And, naturally, it was a struggle.  She had to get out warmers, and in the end, I think we had to try three times to get it to work.  She had to keep flushing the lines to make sure everything was okay, which it wasn't, so we had to start over.  It was definitely painful, and I won't lie, I ended up crying by the end of it, partially out of embarrassment, but also, the pain.  She was so kind.  My goodness, every single person I have encountered there is always so kind, uplifting, and encouraging.  She did everything she could to make the process better.

I finally made it into the MRI suite to get this started.  So, for these tumor scans, there are several parts in the scan when they need me to hold my breath and be even more still than normal because they are trying to get the right pictures.  Some of those breath holds prove to be tricky, especially when you are already nervous in the claustrophobic tube :)  For those of you who haven't experienced an MRI before, they give you a little thing to hold onto just in case there is an emergency of some kind.  I had never had to squeeze that little thing until today.  We were in the middle of one of those "DO NOT MOVE" scans while holding my breath when all of a sudden I felt something warm and wet on my hand near my IV.  I didn't want to move, but it was starting to feel really weird, and my paranoid self pictured my hand covered in blood or something, so I started squeezing it to get their attention.  The girl answered and I told her the situation.  They shut off the machine, pulled me out, and examined the IV.  Thankfully, it wasn't blood, but instead, it was part of the contrast they were injecting.  My IV had come loose somehow, but they fixed it so we could continue.  We had to redo some of those hard scans, much to my dismay, but I kid you not, right in the middle of the longest stretch I had to do, one of my favorite songs (at the moment) came on, Raise a Hallelujah.  Right after that, What a Beautiful Name.  And after that, Reckless Love.  I know I'm not the only person to get excited when one of your favorite songs comes up on the radio, or in this case, Pandora.  But I also know I'm not the only person to recognize those little moments as God-filled moments...grace for the moment if you will.  They calmed me down, and I needed the reminder.  I even shed a few tears of joy under my little eye mask in that MRI.

The scans were finally over, which meant I could eat and take my medicine.  We grabbed a snack and headed over to another building to hear the results of those scans.  Isn't it amazing how quickly they can do that?  It's like real-life Grey's Anatomy at Mayo :)

We were called back quickly and then had to wait a bit to see the doctor.  When he came in, he seemed cautiously happy.  He didn't wait long to tell me that based on the radiologist's initial findings (less than 30 minutes to check the scans) the BIGGEST TUMOR IS SHRINKING!  The other two are stable, meaning no shrinkage but also no growth.  At that moment, all of the misery we had been dealing with felt worthwhile.  However, I was cautiously optimistic.  Not in a Debbie Downer way, but in a realistic, these tumors are PSYCHO kind of way.  It's a step in the right direction, that's for sure.  He commented that perhaps part of the reason that I'm not seeing growth right now is that I am taking the oral steroids daily.  Ugh...those steroids.  The steroids that, at this point in time, I had already started titrating doses and they were wreaking more havoc on my body.  The pain they have caused, and the changes they have brought to my systems, ugh.  But, if they were instrumental in helping my body to fight these tumors, then by golly, I need to be grateful for them!

Speaking of the steroids, we did talk about the adrenal side effects I am having.  I am the first person who started the trial, and at this point, there are eight people in total participating in the trial.  Naturally, I am the only one who is having any of these side effects.  Thankfully he didn't dismiss what I shared with him, but he, too, was baffled by the whole thing.

We then checked out for the day!  Unless something came up, I wouldn't need to go back until the next scan in June 2020.

We grabbed lunch at Blaze Pizza (my first time), and we also stopped at IKEA for a little Christmas shopping.  Dunkin' Donuts tea and coffee to make the trip home, too!

We got home around 7 pm.  I got to see my kids and get them ready for bed and for school the next day.  I was doing dishes around 10, and chatting with my aunt on the phone, when I heard a strange sound coming from Kenton's room.  I ran back there to see him lying flat on his back, choking and trying to gasp for air.  I yelled for Heath, who was already asleep, and by this point, Kenton had been able to take a few shallow breaths and was now crying.  Heath and I jumped in the truck with him, leaving Finley in the house sleeping.  In less than ten minutes, Kenton and I were in the ER, and my amazing friend, Emily, was at my house to sit with Finley.  We spent several hours in the ER that night, with a diagnosis of croup and pneumonia.  It was miserable, I won't lie.  We don't do simple around here!

I spent the rest of the week taking care of Kenton at home.

Sometime later that week, my Mayo patient portal was updated to reflect the new radiology notes regarding my MRI.  I read through the report and was immediately conflicted.  I know I'm not a doctor, but this report clearly stated that there was no significant change in any of the existing tumors/lesions, but also stated there was a new tumor.  I was totally panicked.  I think, in retrospect, that's why I didn't blurt out that my tumors were shrinking.  I got this information either Wednesday or Thursday, and kind of felt the air come out of me.  I wrote to both of my doctors on the portal and heard back from both of them by phone.  They assured me things were moving in the right direction still, and that most likely, this was merely a finger-like tentacle or tail off one of the smaller tumors, and not an entirely new tumor.  It was helpful-ish, but also a bit discouraging.  More uncertainty and more muddy waters to wade through. 

Friday, December 6, 2019 - Kenton was feeling well enough to spend the day with Jolene while I went to the ranch to work.  On the way home, I was completely drained and also dreading what I was going to make for dinner.  I had called my aunt on the car ride home and asked her for simple suggestions of what I could throw together because I just couldn't think straight anymore.  I kid you not...I pulled up to my house to find a box from Spoonful of Comfort, a MEAL DELIVERY SERVICE!  My sweet and thoughtful friend, Eileen, from my days of teaching in Chicago many years ago, had made arrangements for a full meal of soup, bread, and dessert to be delivered to my house.  DO YOU SEE IT?!?!  Just in case you don't, I will continue to share all of these little God stops along the way.  He continues to provide for our exact needs EXACTLY when we need them.  I cried.  My God is so much bigger than all of these things, and yet He is so very present in these intricate details of my daily life.

Monday, December 9, 2019 - Today was another trip to Mayo.  This was the 6-week follow-up from the meeting with the endocrinologists there in October.  I had another appointment that morning at home and then met with yet another sweet friend, Ashleigh, who volunteered to drive me to Mayo.  We got there in plenty of time to get settled at the clinic.  Today's appointment ended up being with a different endo, a nurse practitioner, who was also intrigued by my mess.  This entire season has been hard, but even harder when you go to the professionals, especially the top professionals at a place like Mayo Clinic, and not one of them can explain what is happening in my body, or why it is reacting in this way to the steroid injections.  They are perfectly nice about it, don't get me wrong, but it does get frustrating when they can't give you answers.  This lady was a bit "cold" at first, but once Ashleigh and I started talking about the functional medicine doctor and essential oils, she softened immediately :)  She was also the first person to mention to me the need for a medic alert bracelet or some other type of jewelry for me to wear.  We talked about my dependency on the steroids, as well as other potential immunodeficiencies.  She also had to call in an attending doctor to review the situation.  They weren't certain about the results from the MRI of my brain back in September, and they also wanted to run new and different labs.  They asked if we could stay to get these things done, and while we were willing and somewhat able to do so, we decided to just schedule for another trip back to Mayo before Christmas.

We left the appointment and went to try to schedule the MRI for a later date.  The lady who was checking the schedule could not find anything available, so I told her I would call back later to schedule the MRI.  We headed to the car and I tried to call from outside.  I got in touch with a guy at that same scheduling desk, and he was able to get us in THAT NIGHT!  Like, two and a half hours from the time I was calling.  WOW!  Talk about God making a way for things to open up just to be done!

We left the Mayo campus and enjoyed a delightful steak dinner at Texas Roadhouse :)  We went back to the Radiology Department for my 6:30 pm scan.  Same procedure.  IV was a struggle, but we finally got it taken care of.  My tech for this scan was an older guy, Bob, and he was so kind.  I didn't even have to ask for an eye mask...he already had one ready for me!  He couldn't get the Pandora station to work on his computer, so he graciously logged into his own personal iTunes or Spotify account to play music during my scan.  Seriously, so kind.  He totally did NOT have to do that.  It took a little bit of time, but since it was evening, we weren't really rushing.  The scan was fairly uneventful aside from the musical technical difficulties.  At the end, as he was pulling me out of the scanner and removing my IV, he told me that he loved the music genre I had selected (worship), and then began to tell me that his brother and his wife minister at a church somewhere (I can't remember the location), and it was such a reminder to me that God can use ANYONE to minister to others in whatever situation.  He was so calming for me.  God knew I needed that during an MRI!

It was a very late night for me and Ashleigh, but with some snacks and caffeine from Wawa, we made it home safely, and had a lovely time together, just catching up on life without interruptions from our precious children :)

The rest of December was a bit of a blur.  The two weeks leading up to Christmas were really hard for me.  I was sick for quite a bit of it, something I picked up somewhere.  I ended up at a few more doctor appointments for myself, plus several for Finley and Kenton.  Add on top of that the daily/nightly dizziness from the steroid withdrawal, preparations for travel at Christmas, plus the normal end of semester activities, and I was just kind of in a funk.  Thank goodness we had put up our Christmas tree before Thanksgiving when my parents were here, otherwise it probably never would have made it up!  For the first time, I took myself to get a pity manicure and pedicure.  And to be honest, it felt so great!  I sat next to this older woman, who, during the two hours there, talked on and off about her own cancer journey.  She was almost five years chemo free, and I was grateful for her story.  Grateful for the reminder of a bigger picture.  Sure, I didn't get to do all of the things I had hoped or dreamed of accomplishing, INCLUDING MAILING OUT OUR CHRISTMAS CARDS, and that's hard for me, but in the grand scheme of things, it was okay.  She was a blessing to me in that season.

We spent Christmas traveling to Illinois and Virginia, and by God's grace, I wasn't sick while we were there.  I traveled home alone with the kids while Heath attended a coaching conference in Nashville, and made all of my travel plans to be short driving days so I wouldn't find myself in a dizzy situation on the interstate with two kids by myself.  We were able to stop and see so many great friends along the way...North Carolina, South Carolina, Jacksonville...it was so refreshing.

HAPPY 2020!

Friday, January 10, 2020 - We were back home, back into the routine of school, work, dance, Disney, the whole nine yards.  I had an appointment with my primary doctor to review labs.  It was on this day that my beloved doctor basically said that at this point, medically speaking, he didn't see my situation with my adrenal system changing much, if at all.  He said it has almost been a year, and things just aren't rebounding.  He also said that he believes in miracles and that he knows I do too.  He said that it will be by God's grace alone that this mess undoes itself, that God is the Great Physician.  And, honestly, I have peace with that.  I trust it to be true as well. Of course, I will continue to do my due diligence to help things along the way, but ultimately, this is in God's hands.

At the end of this appointment, he asked me to talk with my endocrinologist about being referred to an immunologist.  He believes there has to be something else we are missing here.  He also told me to give her his personal phone number.  I mean, how many doctors do that?!?!  I know I have a great one :)

Monday, January 27, 2020 - Appointment with the endocrinologist.  This was a short appointment because not much had changed.  She, too, was disappointed in the fact that we had weaned from some of the steroids, and nothing had changed.  I didn't feel well, and could barely make it to the end of the day without the steroids, so we couldn't lower the dosage any more at this point.  New marching orders included more labs and a follow-up in one month.

Thursday, January 30, 2020 - Kenton tested positive for Influenza A.  We got lots of medicine and were instructed to repeat the breathing treatments we had done in December for his pneumonia.

Tuesday, February 4, 2020 - Finley is now sick and tested positive for strep.  Mommy and Daddy are also sick at this point. I need emojis on this blog. 

Friday, February 7, 2020 - Today's appointment was for Kenton.  After the night in the ER, it was determined that he may have some heart issues.  We saw our pediatrician in December and January, and she referred us to a pediatric cardiologist because two separate scans showed that his heart was enlarged.  She wanted to rule out any other possibilities.  The cardiologist, Dr. B., was the sweetest man ever.  He was from Poland, and moved to the U.S. years ago, and lived in Cicero, right next to the neighborhood where I lived in Chicago.  We chatted about the area and how I ended up there.  And how I eventually ended up in Florida.  He was incredibly gentle and calm for both of us :)  We had to do a very long and thorough heart echo for Kenton.  The sonographer was also amazing.  She had been doing this for 30 years.  We waited in the office for the results, and after about an hour, we got the good news...Kenton has an INNOCENT MURMUR, but he should outgrow it.  Nothing to worry about.  At some point during our long appointment, the doctor and I somehow got onto the topic of my health.  He assured me that Kenton would be fine, and told me that I needed to continue to take care of myself so that I can enjoy this little boy.  He was so empathetic and encouraging, and at one point, became a bit emotional as he talked to me about my health issues.  Just another reminder of God's steadfast hand in the midst of all of these things.  Here we were at a stress-inducing cardiology appointment for my almost-five-year-old, and God provided a Godly doctor to encourage ME.  I am learning to be grateful in all circumstances.

The rest of February was fairly uneventful, medically speaking.  I was sick again toward the end of the month and ended up back at the doctor for another sick visit.  I tested negative for flu and strep but was pretty miserable for about two weeks.

Heath's baseball season officially began in February as well.

Monday, March 2, 2020 - I returned to the endocrinologist for more lab results.  This should come as no surprise, but there were no changes to my cortisol levels.  Still baffled, my doctor suggested we try a new medication.  A stimulant, to be more specific.  As I have mentioned before, the adrenal system controls SO MANY THINGS.  And unfortunately, I have several systems that are just off right now.  Without going into too many details, I was referred to the OBGYN for some ultrasounds and other scans.  Every single doctor so far, ranging from the indifferent endocrinologist in Kissimmee all the way to the vast team at Mayo, believes my body is entering or has perhaps already gone through menopause.  This news has been hard to swallow, mostly because I am too young for this to be happening.  My bloodwork just isn't changing, so they want to do more investigation.  I needed to get my referrals all lined up and schedule these appointments so we can move forward down whichever path this points us down.

But let's go back to this stimulant.  She was hesitant to prescribe it, but also intrigued to see if it might wake things up.  She warned me that there would be side effects, particularly heart palpitations and anxiety.  OH GOOD!!  I can hardly wait :)  She sent me on my way and wanted to see me back in a month.

Thursday, March 5, 2020 - My parents arrived for a long weekend of celebrating Kenton's 5th birthday, dinosaur style, with a little bit of Disney thrown in as well :)

Thursday, March 12, 2020 - I received a message through Facebook from a woman inquiring about the clinical trial at Mayo.  She had found my name on the larger Desmoid Tumor Support Page and knew that I was also part of this trial.  She told me that she was selected to be the 10th and final participant in the trial.  We began chatting back and forth about our separate but parallel experiences with our Desmoid tumors.  Can I tell you how refreshing these conversations have been?  Not that I am happy that someone else has to deal with this mess, but the fact that she gets it and doesn't question my experience.  She has been a breath of fresh air for me, and I hope that my experiences will be able to help her in the long run, too.

Friday, March 13, 2020 - The whole world shut down and we entered into the COVID-19 pandemic.

Sunday, March 15, 2020 - I decided to start taking this stimulant.  Ever since then, I have experienced a FULL RANGE of side effects.  The first three days were met with headaches and hot flashes.  The next few days brought some dizziness.  Then the anxiety and INSOMNIA set in.  In some ways, this time of quarantine was the PERFECT time for me to experiment with a new medication because I was able to be home while I was running on 2-3 hours of sleep each night.  In the same breath, it has been the WORST time to start taking a medication with a built-in side effect of anxiety when this has been such an anxiety-ridden time for everyone.  But, alas, we press on.

In addition to nightly insomnia and anxiety, I have been waking up here and there because of stabbing pains in my tumors.  I know this is hard to understand, and I really have no comparison to give to you, but it has been a burning or shooting pain that radiates from my rib line and tumor area and literally wakes me up.  I am grateful for a new product my friend discovered while doing some shopping for me at Walmart...melatonin-infused Epsom salts and sleep soak.  I am trying to take advantage of the quarantine schedule and give my body as much rest as possible.

Tuesday, April 28, 2020 - I was able to get my upcoming MRI appointment (already scheduled for June 2nd) changed so that I'll be able to meet my new Desmoid tumor friend on the Mayo campus while she is there for her second injection.  WOOHOO!!!  Again, God continues to work in the seemingly minute details.

And here we are, Sunday, May 3, 2020, and I am just hanging out in this time of waiting.  That was another reason I was hesitant to share anything because I feel like we are in a holding pattern.  Things aren't changing much, but we keep waiting and hoping for something to be different.  But I know that God is here in this waiting.  Just looking back through my pages and pages of doctors' notes, and my own planner filled with details of our day to day life, I see Him.  I see the glimpses of hope and reminders that I am not alone on this journey.

Thank you for reading this far.  I am beyond grateful for you.  I pray that through this wild and crazy journey we are on, you will see that God is FOR US and that He hasn't left us for a moment.  Perhaps you might see God's presence in your own life, no matter how small it may seem. 

P.S.  I will return to Mayo Clinic for my next tumor scan on Friday, May 29, 2020.  Also, I will finally meet my fellow trial mate that day!

Desmoids and Hashimoto's and Adrenal Insufficiency, OH MY!

You know, I have to take advantage of the humor when I can :)

Friends, it has been a LONG six weeks, with six different doctors appointments, since I last updated. 

But, I can't wait to explain (in detail, of course) how faithful God continues to be at every single twist and turn.

Let's pick up where I left off. 

Monday, October 21, 2019 - My sweet friend, Lindsay, volunteered to go with me to the endocrinology appointment at Mayo.  You know you have a great friend when she asks to hear more details about the whole situation so that she can keep up with the conversations with the doctors.  We spent our drive to Jacksonville chatting about lots of things.

Late that night, I couldn't sleep, so I started preparing myself mentally for the morning appointment.  I had typed up a medical resume of sorts, just hitting the highlights of my medical and surgical journey.  I had also created this very basic Excel chart that tracks the changes in all of my labs over time.  I also printed out my entire blog, just in case they REALLY wanted all of the juicy details. 

I was exploring the Internet and trying to read as much as I could about Addison's Disease, the disorder where one's body doesn't produce enough cortisol, as well as Cushing's Syndrome, the opposite disorder where one's body has an excess amount of cortisol.  I found this really fascinating drawing that showed one body that was divided down the center, the left side reflecting a Cushing's patient, and the right side reflecting an Addison's patient.  What I found most interesting was that my bloodwork tells me I have Addison's Disease, my body physically presents itself as a Cushing's patient.  I was really confused, and wondered how could I possibly have both things at one time...

I finally fell asleep around 3:30 a.m., giving me less than four hours of sleep before our 8 a.m. appointment. 

Tuesday, October 22, 2019 - For those of you who prayed for this appointment to be a breath of fresh air...GOD DELIVERED.  The young "boy" from Saint Cloud came in, sat down, and asked me to start talking.  He was super calm, very kind, and seemed so genuine right off the bat.  He had a pile of papers in front of him, with all of the labs I had sent to them, but also older information from doctors in Illinois.  I presented him with the documents I had created, and instead of telling me that he wouldn't look at them, he was grateful and started reading through them with me.  He actively took notes about the things I shared with him and asked thoughtful questions.  He even asked if he got to keep the THIRTY PAGES of my blog that I printed out for him :)  We talked quite a bit about the clinical trial, and we discussed the details of that.  At one point, he commented about the fact that my address is in Saint Cloud, and that he, too, was from Saint Cloud, to which I responded, "Yes, yes I know.  I did some googling."  We talked about how it was such a small world :) 

He did a physical exam, which is more than I can say about my previous endocrinologist, and then said he would need to step out and look over everything for a bit.

Lindsay and I sat in the room for no more than twenty minutes, chatting and comparing notes, when he returned with the attending endocrinologist. 

She was very kind...not quite as warm as he was, but still, very thorough and professional.  The first thing they shared with us was the conversion of the doses of steroids I received for the clinical trial.  You see, at this point, I was taking 25 mg of hydrocortisone tablets daily.  I had bumped that up to 30 mg and even 35 mg a day, but was told that was too high.  When they converted the dose of Kenalog steroids I was given for each injection, they guessed it to be the equivalent of approximately 600 mg of hydrocortisone.  That's a LOT of steroids in one dose.  No wonder my body has gone haywire!  They basically attributed all of my adrenal insufficiency problems to the clinical trial...the pituitary tumor, the adrenal failure, and the other hormonal imbalances I had been experiencing. 

They explained that when these steroid injections are administered in joints and extremities, the drug stays fairly localized.  However, in my abdomen, such a high blood flow area, it obviously had saturated more of my system than the trial anticipated.     

They were both shocked that my last injection was in March, and yet my body hadn't rebounded yet.  She (the attending) said that at the most, it should have lasted maybe 60 days.  Here we were, nearly eight months post-injection, and my body just hadn't corrected itself.

They both studied my labs and said they were confident my adrenal system would wake up again.  THAT WAS THE HOPEFUL RESPONSE I HAD NEEDED. (My previous endo had basically said I would live on steroids for the rest of my life, no other information given.)  These doctors were incredibly positive and encouraging...until she said I would have to follow-up with my doctor at home...

Talk about a buzz kill.

I felt my jaw drop, and was impressed with the speed at which the following words came out of my mouth..."Oh, no no no. I can't go back to him.  I just can't." 

I then found out that this endocrinology department rarely takes on clinical patients, unless they are super rare or serious.  I was so sad.  Finally, a doctor who listened and had so much to offer, but I couldn't keep him/them.  I asked them for a recommendation in the Orlando area.  She immediately provided me with the name of a woman who helps lead a regional endocrinology "thing" at Mayo and has a practice in Orlando, but not an actual referral.  I googled her name and address right there in the exam room, with plans of calling as soon as we left the building. 

Both doctors left the room at this point, and it was maybe 9:30 or so.  We had spent nearly an hour with the resident alone.  He returned shortly thereafter, sat down, and had more things to say.  He said he wanted to be honest with me.  He knew that sometimes doctors don't describe the entire picture, but he wanted to be transparent.  He said that the next year or so of my life would be really rough.  He then said, "Actually, it's going to suck."  He was talking about the whole withdrawal from the steroids I am currently taking.  The end goal here was to become completely independent from the hydrocortisone.  I appreciated his honesty, and was also a bit scared. 

He had also been looking at the list of medications I had provided for him and advised me to stop taking certain supplements.  He encouraged me to strip everything down to the bare minimum as far as pills and such.  They reduced one of my thyroid medications as well.  They had some labs they wanted to repeat and gave me permission to do them at home instead of staying in Jacksonville for another night.  I was instructed to stop taking my steroids for the rest of the day. 

They also agreed to stay in touch, and that even though I couldn't see them regularly, they would "oversee" my case and check in with me each time I come back to Mayo to see my oncologist.  I was very grateful for that offer and agreed to schedule my follow-up for the beginning of December, around the time of my 6-month scan for the Desmoids. 

Lindsay and I left the clinic and walked to my car.  While we were deciding where to eat, I went ahead and tried to call this endocrinologist in Orlando.  I got through to them fairly quickly but found out that I couldn't see this doctor until February.  I knew that I needed to follow-up with someone within two weeks.  They offered me an appointment with someone else in the practice, but I knew I wanted this other doctor because she was "the best." I decided to hold off and think about this before we actually decided. 

Lindsay and I debriefed the appointment together while we drove to our lunch location (Newk's Eatery).  One of the questions I remember her asking me was if I had any regrets regarding the trial.  Honestly, I didn't.  I knew going into this that there would be consequences.  I never predicted these specific ones, but, I mean, the doctors didn't even see this one coming, so, how was I supposed to know?  Had I chosen chemo or radiation, there would have been immediate consequences.  So, no.  No regrets for me. 

We did some shopping at Target and Michael's, and it was in the sticker aisles of Michael's where I was already feeling the effects of my lack of steroid medications.  We loaded up in the rain, and began driving home. 

About an hour into our drive, Heath sent me a copy of a text message he had received from some girl he had gone to high school with.  I didn't know who she was, but she had randomly seen my blog that morning because I had tagged Heath in my facebook post.  She told him that she worked with a team of six endocrinologists in Maitland, and that they knew the leading pituitary endocrinologist in Florida, and they could help me get in to see her. 

HELLO, GOD!  I see you :)

Heath gave her (his friend) my number and told her to just call me directly.  She texted me, and as soon as she mentioned this endocrinology practice she worked at, I immediately remembered that the woman they referred me to was actually in Maitland, not Orlando proper.  I asked her if she worked with this woman, and she said yes!  When I told her I had tried to get in but couldn't, she said, "Let me see what I can do!"

Ten minutes later, she replied.  She couldn't get me into the doctor Mayo had recommended, but she had agreed to consult on my case if I would agree to see someone else in the practice.  HOW COOL IS THAT?!?!?!?!  She started working with the scheduler, and within the hour, I was scheduled to see this new endo on Halloween.  Less than ten days later. 

GOD IS SO GOOD!

Wednesday, October 23, 2019 - As I was pulling into Finley's school, I received a call from Mayo.  It was my oncologist.  Graciously, he allowed me to put him on hold while I moved through the car rider line.  He wanted to hear about my appointment with the endocrinologists.  He had seen their notes from the appointment and was kind of frustrated at their accusation toward the trial for these problems I'm having.  We talked for about ten minutes about the whole situation.  He really felt that there was no way for the injections to be causing these problems.  I assured him I wasn't blaming anyone, and like I had told Lindsay, I had zero regrets.  I told him I still desperately needed him and his expertise on my team.  He promised me that he was still on my team as well, and we had our Hallmark moment right there on the phone that morning.  He said he wanted to connect with the endo team and talk with them directly about the whole thing. 

Thursday, October 24, 2019 - While Finley and I were in the middle of the parent time of her piano class, I got another call from Mayo.  This time, it was the attending endocrinologist.  She had questions for me.  We basically went through my entire medical history in roughly twenty minutes.  She was incredibly thorough in her questions and was genuinely a bit baffled at points.  She made me feel so good though when she told me that she was so impressed with my historian skills.  Swoon.  I was so grateful for that appreciation!  She was concerned that she hadn't heard any results from the labs I had just completed.  She also seemed genuinely interested in my mess, and said she would be willing to see me again. 

Friday, October 25, 2019 - After a HORRIBLE morning of school drop-off experiences, in the middle of serious tears while driving, I got a text message from a sweet friend of mine from home.  We went through all of our elementary, junior, and senior high school careers together.  She sent a simple message: "Check your Gmail account."  That was it :)  I went home, again, in tears, pulled up my email, and found a collection of letters from several childhood friends, all of which brought me to more tears, but these were tears of JOY and GRATITUDE.  Again, God, I see you. 

Thursday, October 31, 2019 - HALLOWEEN - I met the new endocrinologist in Orlando.  Again, such a refreshing encounter with a doctor who actually listened.  She was thorough, thoughtful, and so kind.  She was empathetic to the whole situation and very decisive with a plan moving forward.  She ordered more lab work, and also ordered an adrenal STIM test.  This is the test that my PCP had wanted the first endo to order, way back in MAY!  She also ordered an updated ultrasound of my thyroid.  She was intrigued as well by the presentation of both Addison's and Cushing's.  She described it as artificial Cushing's, and was also surprised that it had taken nearly six months for these very definitive symptoms to show up (hair loss, purple streaks on my abdomen/arms/legs, dry skin, rashes on my face, SO MUCH FUN).  She was very efficient and spent about 45 minutes talking to me that day.  Again, I was just so grateful for the whole chain of events that had led me to her.  I left feeling confident and calm, knowing that we had a plan. 

Wednesday, November 6, 2019 - My MIL, Jolene, drove me to Maitland for the STIM test and ultrasound.  I had to fast from my steroids again for this test because she wanted to get the clearest picture possible of what was going on in my body.  The ultrasound was super simple and quick, and then we went straight to the exam room for the STIM test.  While we were waiting, I texted Heath's former classmate and asked if she happened to be working that day.  SHE WAS!  YAY!!!  I got to meet her and hug her and attempt to express my gratitude for her help.  Jolene knew who she was, so they enjoyed a nice catch-up as well!  She explained how she had been mindlessly scrolling facebook that Monday night in October when I posted my update.  She said she got up on Tuesday and had to go back and read the details, and that's when she reached out to Heath.  HELLO, GOD!  I still see you!

Jolene and our friend chatted while the other nurse began this STIM test.  The whole point of this test was to test the function of my adrenal glands by injecting my body with ACTH hormone and then checking my blood at timed increments to see if/how the adrenals respond.  I was warned that I may get sick during the test, but thankfully that didn't happen.  The nurse was so sweet though...she knew I didn't want to look at the IV just hanging in my arm, so she gently covered it up for me. 

All in all, no big deal.  Plus, we ended our time with the Cheesecake Factory :) 

Friday, November 8, 2019 - Appointment with my PCP/holistic doctor - I had an entire page of things to share with my primary doctor.  We talked about how I fired his friend.  I updated him on the whole endo journey to Mayo and back to Orlando.  He had an epiphany in this appointment.  He shared with me some details of a trial that was done with testosterone pellets and patients with testosterone problems.  I will spare you the comparison and skip straight to his theory about my body and cortisol.  He said that sometimes when you receive injections like the ones I received, they create a depot of sorts in your body, and continue to leech out the substance for a long time...that perhaps, the massive steroid injections were still just loitering around in my body, and therefore in my tissues, but not necessarily in my bloodstream.  He was so excited while he shared these ideas!  He said that a messed up body like mine is like brain candy for a brain like his.  I was just overjoyed for him in that moment (insert sarcastic tones here).  He ordered a saliva test to be done to measure my cortisol levels. He was confident that the tests would show that my body is still full of steroids and that that is the cause of my Cushinoid symptoms.  He ordered more labs as well.  I think I deserve a fast pass to Quest at this point. 

Monday, November 18, 2019 - Follow-up appointment with the endocrinologist in Orlando.  My new doctor is truly very great.  She is smart, calm, thorough, and doesn't create more stress for me.  That's a winning trait for me at this point!  We discussed the ultrasound first.  I have nodules on my thyroid, which isn't a shock, and my thyroid is consistent with Hashimoto's, which is a good thing.  She wants to move forward on that front with a thyroid biopsy, but not until we request more records from Tallahassee where I have already had some biopsies done. 

We then discussed the STIM test results.  They were not what she had been hoping for.  My baseline cortisol levels were still at 1.0.  After the timelapse, my levels increased to 4.7.  She had wanted to see somewhere between 18-20.  She decided to see what would happen if we cut back on my daily hydrocortisone doses.  I was instructed to reduce my dose from 25 mg to 20 mg, and to adjust the times I took the pills.  She warned me that there would be side effects to this change...

We then discussed my amazing weight, the frustration I'm experiencing from the blasted scale refusing to budge, and the depression that follows all of that.  She offered to schedule me an appointment with the dietician in their practice.  We also talked about some diabetic medications.  While I don't have diabetes, I'm learning every day how incredibly intricate our body systems are.  Not that I doubted, but my goodness, it's so crazy.  Anyway, I had no idea that blood sugar and insulin and all of that were directly related to your adrenal system.  I guess I blocked that part of human anatomy and physiology from my brain.  This whole adrenal shut down is literally wreaking havoc on multiple systems right now.

Thanksgiving Week - A WEEK WITHOUT DOCTORS!!!!!!

Monday, December 2, 2019 - It has been a rough two weeks since I cut back the steroids dose.  I have a newfound respect for people who are able to become sober from harder, more addictive substances because if what I've been experiencing these last two weeks is even a FRACTION of what they are dealing with, I can't even begin to imagine.  I have had excruciating headaches every day, dizziness, nausea, this horrible sensation that my body is either in a moving vehicle or a fast roller coaster that just won't stop, exhaustion, sweating...it's been TERRIBLE.  My body has become completely reliant upon these steroids since June.  I guess this is what the guy at Mayo was warning me about?

Anyway, I am typing this from the bathroom of our hotel room in Jacksonville.  We got here really late tonight after a few changes to our plans.  Jolene came with me this time, and tomorrow morning, December 3, 2019, I will have my second measurement scan for my Desmoid tumors.  I will see the orthopedic surgeon (who is the principal investigator of the trial) about an hour after my scan.  Much like before, I haven't really allowed myself to stop and think about the possible outcomes from tomorrow's scans until NOW.  Actually, my oncologist called me around 6 pm tonight (Monday) to check-in and see how I was doing.  I won't see him tomorrow, but we talked about how I've been feeling, and what's next for me.  I thought that was incredibly kind and thoughtful of him to do. 

If you've made it this far, will you pray for the scan tomorrow?  Will you pray that I will be calm in the MRI, and that these blasted tumors will have shrunk, or at least not grown? 

I have an odd sense of peace right now.  Perhaps it is delirium, as it is nearly 4 a.m., but I know better.  God has held my hand throughout this entire saga, and He will show up tomorrow morning and hold my hand again. 

Thank you for sharing this burden with us.  God is good, and he is faithful to provide everything we need...and for me, that is all of you. 

Tumors and Trials

Hi friends.  Thanks, again, for being "here" with us.  As lonely as this feels sometimes, I know that's just Satan trying to drag me down.  I (we) have an ARMY of prayer warriors, encouragers, and helpers.  God is still here...he hasn't left us hanging to dry :)

Let's just dive right in.

Friday, September 27, 2019 - I had an appointment scheduled with my primary doctor.  16 days is a long time to wait to hear results regarding a potential tumor in your brain.  I had requested that my radiology reports be sent to him as well as the ordering endocrinologist.  So, he sat down with me and confirmed what I already suspected.  The MRI showed a very small mass on my pituitary gland.  My PCP read the report out loud to me, and then gave me a copy.  It provided the measurements of the mass, but obviously they meant nothing to me.  I know that the pituitary gland is about the size of a pea, but that's it.  I also know that my PCP isn't an endocrinologist, and that this was beyond his scope.

Monday, September 30, 2019 - Appointment with my endocrinologist.  Now, if you recall, my PCP referred me to this guy with the disclaimer that he basically has a terrible bedside manner, which, honestly, I learned pretty quickly.  Yes, he was impressed with my Spanish skills during a later appointment, but other than that, we have not really gelled.    I went to this appointment alone, mostly because the blow of the tumor was already given to me.  Nothing new here.  The appointment was not my best.  He was somewhat aloof about the whole complicated mess.  He first looked over lab results, which have not changed.  He then took my blood pressure.  I wish I had taken a video of that whole episode.  The velcro on the cuff wasn't sticking.  I even suggested a larger cuff, in case he was trying to be kind.  Instead, he sat there trying to hold the cuff shut while simultaneously pumping and holding his stethoscope with his other hand, and also trying to watch the dial on the wall.  Seriously, it was ridiculous.  He then announced my BP as something completely abnormal for me, like super high.  I tried to suggest that it was inaccurate, and he shot me down.  Then, we discussed the steroids I have been taking to counteract the lack of cortisol in my body.  He was not happy that my other doctor, who I see basically every two weeks, had told me to take a different dose.  He was clearly agitated by this information, almost miffed.  At this point, I felt completely confused and also defeated.  Two incredibly intelligent individuals, one whom I trust much more than the other, with completely differing viewpoints.  [Insert agonizing emoji here.]  He finally acknowledged the radiology results.  He wasn't bothered by the tumor whatsoever.  He said, "Let's run a full pituitary panel, and I'll see you back in two months."  UGHHHHHHH.  Two more months of feeling this way?  I blurted out to him that I have daily symptoms, including a massive amount of hair loss.  He immediately told me that my hair loss is completely unrelated to my thyroid and adrenal issues.  I think my jaw dropped at this point.  He stepped outside the room to figure out why he couldn't find a number on the digital chart, and I just sat there, dumbfounded.  He returned with a nurse, who fixed the computer, and then he put his arm on my shoulder and said, "Don't worry.  I can fix your hair later, but it has nothing to do with these other things.  We will talk soon." 

AND THAT WAS IT. 

So, I drove home from that appointment in tears.  Why does this have to be so complicated?!?!  Later that afternoon, I had a long chat with my beloved and incredible counselor.  We talked about being assertive, something I CLEARLY struggle with.  We talked about the next steps here...that I needed to do what I had been saying I would do, and that was to contact my doctors at Mayo.  It was beyond time for a second opinion.  It was definitely helpful that at this point, I had had enough. 

Tuesday, October 1, 2019 - I sent a very pointed message to my oncologist around 9:15 am.  By pointed, I simply mean that I told him I needed to see him sooner than December, especially with how our last encounter had been in June.  I asked him to let me know how to accomplish that.  At 2:15 pm, I received a call from HIM!  Not his nurse, but him.  As I have mentioned before, this man is completely brilliant, but also a bit awkward to talk to on the phone.  He immediately asked how I was doing, and wanted to know what was wrong.  He said he couldn't recall our last appointment, or what went wrong during it, so I gently reminded him of the chaos of that day.  He finally remembered being on call, and apologized entirely.  He said that he asks the schedulers not to fill his clinic on those days, but that he still gets patients.  I was very grateful for his reaction, thanked him, and told him that I still needed him on my team.  I updated him on the adrenal system mess, to which he still responded with shock.  I also told him about the pituitary tumor.  He responded more empathetically to that one.  I told him that I am a mess, and that I have to fight for myself here, because no one else can own my medical mess besides me.  I told him that I had been planning to beg him to refer me to an endocrinologist at Mayo, because with all of these complications, I needed to be with a team of doctors who HAVE to communicate with one another.  He responded by telling me that I didn't have to beg, and that he would absolutely help me with that.  I could hear him typing in the background, and he submitted a referral right then and there.  I thanked him for his help, and he said I should be hearing back soon.

Wednesday, October 2, 2019 - Mayo called before noon.  They are so efficient :)  The girl was really nice, and helped me navigate the scheduling world.  The first option she gave me was while we were scheduled to be at the beach with my parents...opposite coasts of Florida.  The second option wasn't until November 8th, but I figured what's a few more weeks?!  I took the November appointment, and started making calls to obtain records and copies of scans.  Around 5 pm, my scheduling friend called me back to let me know she decided to check the schedule one more time, and happened to find a cancellation on October 22nd...17 days prior to the other appointment!  YAY!  Less wait time :) 

I have been rounding up current records from both doctors here, as well as the imaging center I used for the MRI.  I have one more phone call to make tomorrow, and then hopefully everything will be there at Mayo waiting for me on Tuesday.  I have created a medical resume for this new doctor to be able to take a glance at one sheet to get an overall summary, or at least the high points.  I will also be typing out my questions because I don't do well on the spot with anything.     

STOP.  I almost forgot one of the craziest parts of this whole thing.  One night last week, after my appointment was scheduled and confirmed, I couldn't sleep.  I opened my Mayo Portal app to just check to see that the appointment was, in fact, still there (P.S.  I know that I am crazy).  I noticed that there was a doctor's name listed with my consultation.  I decided, like any sane person would, to Google him :)   His last name is very unique.  The first listing was from the Florida State University College of Medicine.  Oh, how nice!  Small world.  We lived in Tallahassee.  Oh, wait.  Under his profile...

Hometown: Saint Cloud, Florida (our current home) 
High school:  Harmony High School (the school where Heath now coaches)

WOW!!!!  That's insane, I thought.  Then, I figured we might even have mutual friends on Facebook.  Switched apps.  Typed in his long name.  Sure enough, we have three mutual friends...including my future sister-in-law!  Say what?!?  So crazy!!  My future SIL went to school with him and knew him.

Like I said at the beginning, God is still very much here, working in the midst of this chaos.  I just have to keep trusting Him.  Good golly, that is so hard.  I'm trying.  Every.single.day.  Sometimes hour by hour. 

Will you pray for this appointment on Tuesday?  I need help.  Many things have gone awry in my body.  I am doing the best I can to research, listen, study, take a multitude of medications each day that at this point, don't seem to be helping much, and to rest...on top of trying to take care of our kids, do my job, and basically carry on like none of the rest of this is happening.  I'm incredibly worn out, discouraged, and in desperate need of doctors who can help me.  I am praying that this sweet boy from Saint Cloud will be a breath of fresh air and that he will be able to come up with a plan for us. 

Thank you for reading.  Thank you for praying.  Thank you for encouraging and blessing our family.  I know things could be monumentally worse, and I try to practice gratitude every day.  But some days threaten to swallow me whole.  Thanks for shouldering the burden with us. 

**I forgot something else.  My endocrinologist called me.  Not his nurse, but actually him, on Tuesday, October 15, 2019.   He had received the pituitary panel of lab work.  More things are problematic. I have abnormally low levels of one hormone that I struggled to understand the name of on the phone, and then abnormally high levels of LH and FSH.  He asked me several questions about things that I have already tried to tell him in previous appointments.  He said we would meet again in two months.  And then he noticed my chart said something about sending records to Mayo.  He immediately got cranky, asking why I was doing that.  I told him I wanted to run these things by my oncologist, and that I needed a team of doctors who were willing to speak to one another.  He simply said, "okay, fine."  And that was the end of that...and at that, I was even more grateful for our already-scheduled consultation at Mayo :)

Trusting God When It Just Doesn't Make Sense

Friends, this journey just keeps twisting and turning.  Let me give you a quick "last in Erin's medical MESS...":

My oncologist was concerned about the lesions on my liver, so he ordered a particular MRI with a specific contrast (no idea which one).  We were also scheduled for my first measurement scan to see how those three precious tumors are doing :)  We were told, multiple times, that these MRI scans could not be combined, therefore we were scheduled for one on Thursday, June 6, for the liver, and the second on Friday, June 7, for the tumors/clinical trial. Let's just pick up from there.

The kiddos were all squared away with Heath's mom, Jolene.  We took off and headed to Jacksonville for my first MRI, scheduled for 5:30 pm.  We arrived early, and Heath dropped me off to get signed in and such.  Because the radiology department was fairly empty, I was basically walked right back.

The medical assistant handed me all of the super cool hospital garb, and started looking through my chart.  She walked me across the hall and started asking me why I was scheduled for a second MRI the next morning.  I asked her if that would be a problem because of the contrasts used.  She said no, that they ask for twelve hours between the various contrasts.  I told her that I was told to have two separate scans...????  She apologized and said it was fine, and then got my IV all ready to go.

I quickly made it into the MRI suite, where I met one of the best MRI gals I have ever had.  In all of my experiences, she was the first to offer me a small towel to cover my eyes so that I wouldn't be able to see the tube of anxiety wrapped around me :)  She was beyond brilliant.

The scans were tough this time because of the release of the contrast.  The girl (naturally I can't remember her name...maybe Megan?) was very encouraging and patient with me as a struggled through some of the harder "you must hold your breath and not move for a long time" scans.  Thankfully, I didn't have a panic attack this time, and because it was later in the evening, I didn't feel the pressure to move quickly and get out of there.

The scans took about an hour, and then we were on our way...to TEXAS ROADHOUSE!  Yes!

The next MRI was scheduled for 7:30 am on Friday, so we arrived a little before 7.  I was admitted fairly quickly and got all of my cool clothes again.  I was called back to the nurses' area to get ready for my IV.  I asked him if I could run to the bathroom first.  When I got back, he had vanished.  I sat in the chair and waited for what felt like forever, when finally he returned with another staff member.  She introduced herself to me, and asked me why I was back this morning after I had had a scan the night before.  I explained the situation to her, and she just didn't seem to understand.  She said she would go speak to the radiologist and verify what was happening.  I told her that I was simply told that I needed two separate scans because of the differing contrasts.  Off she trotted...

When she came back, she told me that the radiologist could see everything that she needed to see in the previous scan, and that this one was completely unnecessary.  On one hand, I was elated!  No need for a second trip in the tiny claustrophobia-inducing tube, and also, some MAJOR money savings.  On the other hand, I was worried that I would have a repeat of what happened in Tallahassee when my surgeon ordered a biopsy to be done, and the radiologist canceled it for good reason.  I asked this girl to verify with my oncologist that I didn't need the second scan.  They tried to reach him, but we never got an exact answer.

So...we canceled!  Then we had nearly three hours to kill while we waited for my appointment with the oncologist.

Now comes the fun part.  And by fun, I mean COMPLETELY CRAZY.

My appointment with my oncologist was scheduled for 9:45.  We were called back to the room in a timely manner, and then proceeded to wait for about 45 minutes.  My doctor breezed in, sat down abruptly, and we jumped right in.  I stopped him to let him know that I didn't have the MRI done for the liver.  He paused and asked why not.  I told him that the radiologist said only one was needed for both orders.  His response was, "Well, of course.  You only needed one scan.  Why would you have two done?"

I totally responded (silently, of course) in the same way that a child responds to a complete injustice in his or her world.  My eyes bugged out of my head, my jaw dropped, and I turned to face Heath with a look on my face that could only express the thought, "Are you KIDDING ME?!?!?!"  I was slightly annoyed.  Not only had my doctor told me verbally and in written communication at least THREE TIMES that I could not combine these scans for any reason, but now he was telling me that of course, why WOULD you have two separate scans...I just sat there staring at him.  He logged into his computer, and then said, as he scooped up his stack of books and papers, "Oh, I'm supposed to be somewhere else right now..."  And with that, he stood up and walked out.  So many emojis to insert right here.

So, we sat and waited for about 30 minutes for him to return.  We were slightly confused by his abrupt exit, but oh well.  He returned in the same abrupt manner he had left.  He sat back down, caught his breath, and then told us that he was sorry, and that he had been away at a conference, his clinic was now full, he was overseeing the chemo room that day, and that he was the "doc on call."  I would be overwhelmed too, pal.  We had just started to talk again about my scans when his pager started going off.  He apologized and interrupted our appointment again to answer the page.  Apparently, he was needed down in the chemo room.  Honestly, if I had been the patient receiving chemo and was having a problem, and my doctor was in the same building as me, I would have wanted him too.  So, he took off again, and returned about 15-20 minutes later.

He sat down, took a few deep breaths, and we continued, or basically started over.  I shared with him about the tumor pain, and also shared with him concerns regarding my adrenal system.  He immediately shot those down, and told me if were experiencing adrenal failure, I would be sitting in the hospital, not talking to him in his clinic.  I shared with him that I had been referred to an endocrinologist and that I was awaiting more lab results from him.  He still seemed uninterested.

He pulled up the radiology report, and informed me that the lesions on my liver WERE, IN FACT, BENIGN, and consistent with FNH (Focal Nodular Hyperplasia), and that we would continue to monitor them in the following MRIs.  He followed that wonderful news with the update that one of my three tumors has grown.  The other two are "stable," but the largest of the three has progressed some.  He asked me, "Why did you guys choose to inject the smaller tumor and not this larger one?"  I kind of mumbled something like, "um, excuse me?!  I didn't decide anything here..." but we didn't really go down that conversation path.  His comment/question made me very concerned though...didn't he communicate with the other doctor on the trial about these decisions?  Why would he even say that?!  It was all very strange...

He then asked if he could do a physical exam.  I got onto the table/bed, ready for him to induce pain on my tumors.  He washed his hands, and proceeded to palpate my lower abdomen, nowhere NEAR the tumors on my rib line.  Then he washed his hands again, and sat back down.  This time I did speak up and ask if he was actually going to touch the tumors.  It was all just so strange and out of character.

 And with that, he said we would follow-up in six months.  As he walked out, he turned back and said, "And please send me a copy of those labs from the endocrinologist..."

.............

That was our super strange experience at Mayo in June.  Good news, mixed in with some not so encouraging news, and an incredibly disjointed clinic experience.

I'm sorry this is so long, but the story isn't over yet.

Fast forward to June 18th, the day before we traveled to Illinois.  I had a follow-up appointment with my new endocrinologist.  (We had met with him on May 30th, the day my primary doctor "broke up" with me.  At that first appointment, he had scoffed at our suggestion that my body was in adrenal failure, and was just kind of grumpy the whole time.  He ordered several labs to be completed.)

When I met with him in June, I think I softened his rough edges by beginning the appointment trying to describe my health situation in Spanish :)  We chatted briefly about where, when, how, and why I learned Spanish, and he almost immediately shifted his demeanor.  He then turned to his computer, reviewed the lab results, looked at me and said, "Well, you are definitely in adrenal failure."

Duh, kind sir.  :) 

My labs showed that I have zero cortisol in my body, which implies adrenal failure.  However, my labs also indicated that I have zero ACTH (Adrenocorticotropic hormone), the hormone that is created and released in the pituitary gland.  My endocrinologist is concerned that I may have secondary adrenal failure (which suggests either damage or interruption at the pituitary level) or possibly even tertiary adrenal failure (which suggests damage or interruption at the hypothalamus level).  In order to determine these things, he ordered an MRI of my brain.  CUE THE PANIC ATTACK.

I won't lie.  I deliberated on that for almost a month.  I finally called the imaging center on Monday, July 15th, after my sweet friend, Jenny, recommended that I listen to a podcast from Rachel Hollis (she spoke heavily about tractional movement forward, small steps, and celebrating every small success).  That day, my small success was actually dealing with the fear and finally scheduling the scan.  Well, that turned into a hot mess with insurance/referrals/vague orders.  My appointment for August 1st was canceled and then denied several times, but is now approved and officially happening TODAY, September 11th, in Orlando.

So this is where we are now.  And I hate even sharing these details because there are FAR WORSE THINGS happening to other friends and family members, even, and this seems trivial most days.  But then there are the sobering days at doctors offices when I come unglued and feel so defeated and overwhelmed by the current state of affairs.  I am incredibly nervous about the MRI tomorrow.  BUT, I know we have to move forward with this to get more answers.

Will you pray for my nerves during the scan?  Will you pray that the answers will be abundantly clear, one direction or another?  Will you also pray that my oncologist at Mayo will be able to listen and communicate more clearly during our next visit, which will now be happening much sooner than December?  Will you pray specifically that he will acknowledge the side effects I am experiencing and help us move forward toward a solution?

Thank you for being our tribe.  Thanks for standing in the gap with us, especially on the days that I don't feel like I can keep standing anymore.

"And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.  To him be the power for ever and ever.  Amen."  ~ 1 Peter 5:10-11