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!