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.
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