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.
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