I apologize for not updating sooner. To be honest, I just needed a mental break from processing everything I'm trying to process. I've come to the conclusion that yes, this blog is helpful for communicating most of the intricate details of this health mess I have found myself in, and it is helpful to communicate to friends who I don't get to see in person too often, but it is also a place for me to process, ponder, and basically struggle through my thoughts and feelings of this whole deal. After my last day at Mayo, I was just kind of emotional and a little bit "over it."
Let's rewind and refresh again. After seeing my oncologist on March 1, he wanted me to have genetic testing done and to have a liver biopsy of the "lesions" that are on/in my liver. Our appointments were scheduled for March 18.
We arrived at Mayo and went to our first appointment of the day with a genetic counselor. Her name was Jessica, and she appeared to have just graduated from college. No judgment, except that I felt old. She walked us through the process of checking for a mutation on this specific gene. She made a quick family tree where we discussed my children, my brother, my parents, aunts and uncles, and my grandparents. We discussed health issues that run in the family, when my grandparents died and from what. Based on that simple document, she said she didn't see any red flags that suggested I was a highly likely candidate for this colon cancer gene. Of the 3-4 people per million who have Desmoid tumors, 5-15% of them have the genetic condition. So, the probability that I DO NOT have this gene mutation is fairly high. If I were to test positive for the APC gene mutation, there will be ramifications for my children, obviously, and possibly for my parents, although, at this juncture, it is highly unlikely that they have it...if I test positive, I will most likely be the first person in our genetic line-up to have a spontaneous mutation. Cool, huh?! Why can't I insert eye-rolling emojis on this platform?
Anyway, after we met with Dr. Jessica, we went to another part of the hospital to await the liver biopsy. We were super early (shocking, I know), and we had quite a bit of a wait. They finally called me back, and I was admitted into a little holding area of sorts. They prepped me (gave me a rad gown), and called Heath to come back to this holding tank with me. They were running really behind, so much so that both of us fell asleep for what felt like an hour! The nurse finally called my name, and they wheeled me back to a procedure room that I had already been in twice during this journey...so that was nice, or as nice as a familiar procedure room can be.
The sonographer began searching for these lesions. She was comparing her screen to my scans, I believe, and she just kept working that wand. Pretty soon, the tiny room was bustling with people...two radiologists, some lab tech guy (can't remember his title...but he was there to await the biopsy sample to inform them if it was large enough), another nurse, and another sonographer gal. The first radiologist, who was in my line of vision, and also trying to comfort me as best as possible, stood there watching the screen with a befuddled look on his face.
**Keep in mind that I was rolled up on my left side, literally gripping the mattress. I tried to tell them that I had wanted Valium for this part...not because of the pain, but because of the anxiety. And the anxiety I definitely had. I basically sat there crying silently during this whole thing, and the only thing that was keeping me somewhat distracted from completely sobbing was the song, "Holy Spirit" by Jesus Culture. The lyrics to the chorus just kept repeating in my mind:
Holy Spirit you are welcome here,
Come flood this place and fill the atmosphere
Your Glory God is what our hearts long for
To be overcome by your presence Lord
The sonographer (also can't remember her name...maybe Kathy???) kept pushing and probing with her wand. They kept asking me to take deep breaths and to try not to move. Apparently, this was why they couldn't give me Valium. They needed me to participate. (Insert more eye-rolling emojis here...I'm sure they were wishing I had had Valium too...)
After about an hour, the other radiologist, who had been behind me, watching both screens, came over to stand in front of me. He squatted down and basically told me they were going to stop at this point. He said that it was just too risky and violated the whole "do no harm" concept. He said that when they received the scans and the orders for the biopsy, they told my doctor that they would do their best, but that basically, the lesions are in a difficult location to biopsy, and based on their observations during the ultrasound, the lesions did not appear to be as large as they did on the MRI scans. They were worried about the risk of hitting my lungs or ribs to obtain a potentially healthy sample of liver tissue.
So...that was that.
The nurse then wheeled me back to the holding area, and we packed up and left, and then waited to hear from someone.
About 10 days later, on March 29th, I received a very simple message through my Mayo Portal:
"No identifiable pathogenic mutation was found in the APC gene. Therefore, there is no evidence you have familial adenomatous polyposis (FAP) syndrome."
Okay, there was a tiny bit more to that message, but really, not much.
PRAISE THE LORD (but honestly, it was a very cautious celebration).
The negative genetic test was definitely good news because it eliminated one big potential problem, but at the moment, it didn't answer the new and other looming question regarding my liver.
On Monday, April 15th, while hurriedly shopping at Target the day before flying to Illinois for Easter, I received a phone call from my oncologist. If I haven't mentioned before that this man is definitely brilliant, well, he is. However, he is also kind of hard to track, hard to follow. He called me, and in less than 90 seconds, he explained that he had had a meeting with the radiologists, and that based on my age and gender, they believe I may have FNH (Focal Nodular Hyperplasia), and that I could have another MRI to confirm or rule this possibility out. I stood there by the Target Dollar Spot just spinning. I was already scheduled for my first tumor measurement MRI for the trial, but apparently, they cannot be combined. I am now scheduled for two MRI scans, one for this liver dilemma, and the other for the clinical trial. I will have both of these done this week, on Thursday the 6th and Friday the 7th.
In addition to these little hiccups, I am also dealing with some other side effects to the steroids. The last three months have been really hard. I started having these dizzy spells of sorts. They started slowly, with maybe some spinning moments during a meal, or several hours after a meal that led me to believe they were blood sugar related. A few began while I was driving, which was definitely nerve-racking. A few of the episodes were so bad though, that I literally had to stop what I was doing and go to bed before I either fell over or threw up. I have been seeing a functional medicine doctor for almost two years. He has been watching my adrenal system and thyroid mess closely, especially since one of the potential side effects to the trial was adrenal suppression. Last week, he basically "broke up" with me because alternative medicine doesn't seem to be helping me right now. He can be a bit extreme, but the labs don't lie. My adrenal system appears to be shutting down, and it hasn't rebounded since the final steroid injection. Last week, he referred me to a traditional endocrinologist. I am waiting for more test results and a follow-up with this new guy later this month.
So, there you have it.
If you are still reading, I want you to understand the reality right now. Several people have messaged me and approached me about this saga, and have commended me on the way I am handling it. But please know, I have many a "Mayo moment," (a phrase coined by my sweet friend, Lauren). I fall apart into tears often, but mostly during and after any doctor's appointment. My body physically hurts. My tumors hurt (I know...I read that too, and it sounds so stupid and so weird, but it's annoyingly true). My lack of musculature in my abdomen makes my back hurt. I am struggling with depression right now, and add all of that on top of a body that is really struggling to find energy, it has been really hard. My house is a disaster, like all the time. I have been trying to put sleep and rest first, but some days I just can't. I have the sweetest and most supportive friends in the world, and yet I still feel lonely. This journey isn't over, and some days, I just feel so depleted, defeated and numb.
BUT, I keep trying to remind myself of my unwritten word for the year, and that was GRACE. Grace for myself, grace for my friends and family, and grace for those who are also hurting and maybe struggling in secret.
It's just so hard.
Life can be so heavy. Like, knock you down, drag you through the mud, and then kick you again just when you are trying to stand back up.
We carry so many burdens.
We experience so much pain.
Let-downs. Betrayal. Broken promises. Shattered dreams. Grief. Heartache. Unexpected loss.
We live in a deeply darkened, sin-infiltrated world. We, collectively, are a mess. We are the products of a broken world. We are hurting. We are desperate to make sense of things, desperate for change.
BUT, lucky us, we have the answer right in front of us.
For me, Jesus is the only answer.
For me, Jesus is the One who makes sense out of confusing situations.
For me, Jesus is the One who grounds me at the end of the day.
Listen, Jesus is the only One who can make this mess unmessy. He's the only One who can make things new again. He's the only One who can bring healing to my body. He's the only one who can supply the grace I need to get through my days. I am desperately trying to trust Jesus in this and have faith that He will bring me through it, even on the days when it is just so hard.
PS. The doctor who "broke up" with me last Thursday called me on Saturday to check on me and to see how the new endocrinologist was, how my appointment went, and to remind me that he is still on my team, just hanging in the background right now. See? Grace. Just when I needed it :)
