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!
