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 :)
Monday, June 03, 2019
Sunday, March 17, 2019
Final Injection and Other News
Just a little continuation of the Desmoid tumor drama...
We went to Mayo on March 1 for my third and final steroid injection for the Desmoid tumors. It was another smooth, although a bit painful, injection with a new radiologist. He, too, is part of the team who is working on this clinical trial. I had no idea, and in this moment, I can not for the life of me recall his name. Anyway, he was very kind, encouraging, and had an excellent bedside manner. The sonographer was the same one I had had for injection #2, and she was also kind, familiar, and comforting. From this point forward, there will be no more injections. Only waiting, and biannual scans for the next two years.
Let's rewind though. Our first appointment that day was with my oncologist, Dr. Attia. I hadn't seen him since our original consultation back in November. He only has clinic hours on certain days, and our paths just haven't crossed. If you remember, I had a baseline MRI done back in December because the radiologist feared I had three tumors instead of one, which was accurate. That MRI also showed some lesions on my liver, which the orthopedic doctor mentioned, but was not concerned about. Well, Dr. Attia had a completely different vantage point. (These lesions have been present for quite some time, but no one had been concerned about them in Orlando either.)
When he walked into the room, his research nurse and I were discussing the cost of my MRI. He sat down and immediately asked what we were talking about, and then followed it up with, "Well, you're going to need another MRI." My response was, "Yes, of course, in June, right?" But no. He said I needed one soon. He then asked me if I had had a colonoscopy...to which I responded, "ummmm no?!?!" (thinking to myself, why would I elect to have one of those?!?) He proceeded to explain these lesions on my liver. He is concerned because if I have the genetic form of these Desmoid tumors (Familial Eadenomatous Polyposis), I will be at a predisposition for colon cancer. Apparently, the liver is often times one of the first places that other cancers metastasize to. So, basically, he just wants to rule this out. He apologized that all of this is happening, and he said he was so sorry to give us this information, but that he is my doctor and wants to do his best to take care of me. He said that "tissue is the issue" and he would ideally love to have a biopsy done. So, this is the route we have chosen to start down.
I have been scheduled for genetic testing and for a liver biopsy tomorrow morning at Mayo. We will be leaving super early in the morning to get there for the first appointment at 9 am. We covet your prayers. I have been super busy with Kenton's birthday weekend, my parents being here, and then with Kenton's surgery and recovery that I haven't allowed myself to stop and think through this news. Anytime anyone says cancer, I think it is safe to say that the initial response is fear. I am trying not to be overwhelmed with fear and uncertainty, but I am scared. I am nervous. I am anxious. I can feel the emotional dam that is about to break open and send a flood of tears. I have given myself permission to cry and be upset, but I don't want it to consume me...not until we have more answers. I am trying to stay calm though.
Thank you for walking alongside us as the plot keeps shifting. Thank you for your prayers, your words of encouragement, the messages, the snail mail...it does not go unnoticed and we are so thankful for our tribe.
We went to Mayo on March 1 for my third and final steroid injection for the Desmoid tumors. It was another smooth, although a bit painful, injection with a new radiologist. He, too, is part of the team who is working on this clinical trial. I had no idea, and in this moment, I can not for the life of me recall his name. Anyway, he was very kind, encouraging, and had an excellent bedside manner. The sonographer was the same one I had had for injection #2, and she was also kind, familiar, and comforting. From this point forward, there will be no more injections. Only waiting, and biannual scans for the next two years.
Let's rewind though. Our first appointment that day was with my oncologist, Dr. Attia. I hadn't seen him since our original consultation back in November. He only has clinic hours on certain days, and our paths just haven't crossed. If you remember, I had a baseline MRI done back in December because the radiologist feared I had three tumors instead of one, which was accurate. That MRI also showed some lesions on my liver, which the orthopedic doctor mentioned, but was not concerned about. Well, Dr. Attia had a completely different vantage point. (These lesions have been present for quite some time, but no one had been concerned about them in Orlando either.)
When he walked into the room, his research nurse and I were discussing the cost of my MRI. He sat down and immediately asked what we were talking about, and then followed it up with, "Well, you're going to need another MRI." My response was, "Yes, of course, in June, right?" But no. He said I needed one soon. He then asked me if I had had a colonoscopy...to which I responded, "ummmm no?!?!" (thinking to myself, why would I elect to have one of those?!?) He proceeded to explain these lesions on my liver. He is concerned because if I have the genetic form of these Desmoid tumors (Familial Eadenomatous Polyposis), I will be at a predisposition for colon cancer. Apparently, the liver is often times one of the first places that other cancers metastasize to. So, basically, he just wants to rule this out. He apologized that all of this is happening, and he said he was so sorry to give us this information, but that he is my doctor and wants to do his best to take care of me. He said that "tissue is the issue" and he would ideally love to have a biopsy done. So, this is the route we have chosen to start down.
I have been scheduled for genetic testing and for a liver biopsy tomorrow morning at Mayo. We will be leaving super early in the morning to get there for the first appointment at 9 am. We covet your prayers. I have been super busy with Kenton's birthday weekend, my parents being here, and then with Kenton's surgery and recovery that I haven't allowed myself to stop and think through this news. Anytime anyone says cancer, I think it is safe to say that the initial response is fear. I am trying not to be overwhelmed with fear and uncertainty, but I am scared. I am nervous. I am anxious. I can feel the emotional dam that is about to break open and send a flood of tears. I have given myself permission to cry and be upset, but I don't want it to consume me...not until we have more answers. I am trying to stay calm though.
Thank you for walking alongside us as the plot keeps shifting. Thank you for your prayers, your words of encouragement, the messages, the snail mail...it does not go unnoticed and we are so thankful for our tribe.
Tuesday, February 19, 2019
Tipping Points
I'm not sure if that is the technical term I am looking for, but I think you know what I mean...things that tip the scales one direction or the other...or, the idioms...the straw that broke the camel's back, the drop that overflowed the bucket (I'm fairly certain that is an idiom I learned in Spanish in Costa Rica, but the concept applies in English as well). No matter how you say it, the concept remains the same: the seemingly small or insignificant (insert word STUPID here) thing that just tips you over the edge.
Well, who knew that mine would come as the result of a failed morning at Quest Diagnostics.
No, don't worry...this moment didn't come as the result of bad news, but rather the inability to get labs drawn because of two minutes. Time-sensitive labs that needed to be drawn by 9 am, but because of a computer glitch and my name being called at 9:02, those labs could not be completed. Also, the inability to submit lab materials (ahem, a stool sample for one of my children), because I was not told exactly how to store them, nor did I sign her name in for the drop-off. Silly me, I thought I could just drop those off when I did my own lab tests. Obviously, I was wrong. So stupid. In the big scheme of things, NOT A BIG DEAL, like, AT ALL. But, it turned into an hour-long "tipping point" into the abyss of scary and unknown things for me.
Time. Health. House. Home. School. Church. Family. LIFE.
Basically, everything that is burdening me right now.
TIME, because I was now going to be late for the rest of my day...my day that I thought I had planned out "so well," but in reality, got messed up right out of the gate. I spent my entire drive home, AND my entire 25-minute drive to the ranch just sobbing. Ugh.
HEALTH, because, well, I try my hardest to keep my chin up and keep moving forward, but there are days when the giant question mark of the unknowns in my health just knock me down. I try to hold it all together and stay positive, but when I allow myself to stop and think about some of these things, I just fall apart. I tend to keep myself really busy, which isn't necessarily wise. I'm in nearly constant pain, which is another constant reminder of the whole mess.
HOUSE, because we have been looking for a house for over a year and we keep coming up empty.
HOME, because, well, that whole "keeping really busy" thing kind of affects the whole "maintaining our home" thing. I have piles, and I have clutter. Annnnnddddddd I just took down the Christmas tree on the 16th...of February. Possibly a new personal record. In my defense, that Christmas tree has brought me joy every single day since Christmas, so that makes it socially acceptable these days, right?
SCHOOL, because who knew that making decisions about your children's schooling would be so RIDICULOUSLY HARD?!? Do any of you remember the book, Choosing God's Best? Obviously, it was about dating and marriage relationships, but I feel this way when thinking about who will be involved in my children's learning experiences, and where those learning experiences will take place. Will they be challenged? Will they be nurtured? Will they be loved? Will they grow spiritually, emotionally, academically, socially, and mentally? UGH. So.much.pressure.
CHURCH, because I have been wrestling for quite some time with what my role is in the church at this point. Our life has changed so much in the last several years. Trying to really think through where I might be gifted, how I can use those gifts, and how to serve the Church in this crazy, busy, and quite frankly, overwhelming season.
FAMILY, because, I mean, whose family is perfect? Not ours. Everyone has challenges. Everyone has struggles. Our "plate" has been kind of full lately, so there are days where it just feels suffocating.
So, basically, that poor woman at Quest had no idea that when she told me I couldn't do my labs and that my poop samples weren't accurately stored, she would have a front row seat to my unraveling, that tipping point for me. And yes, the tears began inside the open hallway in Quest...right smack dab in the middle of it. Where are my facepalm emojis on this laptop?!?!
It's lame, I know. Reflecting on it now, and in the moments since Friday morning, I'm reminded of how much I am NOT in control...OF ANYTHING. I can do my best to plan wisely and be a good steward of my time, my health, my house, my home, our decisions for our family...but in the end, it is God who knows how things will shake out. It is God and God alone who knows and has a purpose for all of these things. I just have to keep trusting that it will be for His good in the end, you know? What a scary and comforting place to be, right? Scary because I am not in charge, but comforting because I am not in charge. God's got this.
I've been reading this amazing book by Lysa TerKeurst. It's called, It's Not Supposed to Be This Way. I'm not finished with it yet, but oh my, SO MUCH GOODNESS so far. She was talking about these hard things that we go through, and that yes, it kind of SUCKS (sorry...blunt), but that perhaps, we are missing the goodness of God through our struggles. That perhaps God's story THROUGH our heartache and struggles is the story that matters most. Not the end outcome, but how we live in the NOW, and how we anchor ourselves to God during these times. God's got this. He already knows how the story ends.
But still, so hard. Just so very hard sometimes.
One of my favorite shows of all time is Friends. The theme song begins with, "So no one told you life was gonna be this way..." But Jesus did. He said, "In this world you will have trouble. But take heart! I have overcome the world." Trying to take heart and trust right now. God pulled me back from plummetting into my scary abyss. It's all going to be okay. God's got this.
And He hasn't failed me yet.
Well, who knew that mine would come as the result of a failed morning at Quest Diagnostics.
No, don't worry...this moment didn't come as the result of bad news, but rather the inability to get labs drawn because of two minutes. Time-sensitive labs that needed to be drawn by 9 am, but because of a computer glitch and my name being called at 9:02, those labs could not be completed. Also, the inability to submit lab materials (ahem, a stool sample for one of my children), because I was not told exactly how to store them, nor did I sign her name in for the drop-off. Silly me, I thought I could just drop those off when I did my own lab tests. Obviously, I was wrong. So stupid. In the big scheme of things, NOT A BIG DEAL, like, AT ALL. But, it turned into an hour-long "tipping point" into the abyss of scary and unknown things for me.
Time. Health. House. Home. School. Church. Family. LIFE.
Basically, everything that is burdening me right now.
TIME, because I was now going to be late for the rest of my day...my day that I thought I had planned out "so well," but in reality, got messed up right out of the gate. I spent my entire drive home, AND my entire 25-minute drive to the ranch just sobbing. Ugh.
HEALTH, because, well, I try my hardest to keep my chin up and keep moving forward, but there are days when the giant question mark of the unknowns in my health just knock me down. I try to hold it all together and stay positive, but when I allow myself to stop and think about some of these things, I just fall apart. I tend to keep myself really busy, which isn't necessarily wise. I'm in nearly constant pain, which is another constant reminder of the whole mess.
HOUSE, because we have been looking for a house for over a year and we keep coming up empty.
HOME, because, well, that whole "keeping really busy" thing kind of affects the whole "maintaining our home" thing. I have piles, and I have clutter. Annnnnddddddd I just took down the Christmas tree on the 16th...of February. Possibly a new personal record. In my defense, that Christmas tree has brought me joy every single day since Christmas, so that makes it socially acceptable these days, right?
SCHOOL, because who knew that making decisions about your children's schooling would be so RIDICULOUSLY HARD?!? Do any of you remember the book, Choosing God's Best? Obviously, it was about dating and marriage relationships, but I feel this way when thinking about who will be involved in my children's learning experiences, and where those learning experiences will take place. Will they be challenged? Will they be nurtured? Will they be loved? Will they grow spiritually, emotionally, academically, socially, and mentally? UGH. So.much.pressure.
CHURCH, because I have been wrestling for quite some time with what my role is in the church at this point. Our life has changed so much in the last several years. Trying to really think through where I might be gifted, how I can use those gifts, and how to serve the Church in this crazy, busy, and quite frankly, overwhelming season.
FAMILY, because, I mean, whose family is perfect? Not ours. Everyone has challenges. Everyone has struggles. Our "plate" has been kind of full lately, so there are days where it just feels suffocating.
So, basically, that poor woman at Quest had no idea that when she told me I couldn't do my labs and that my poop samples weren't accurately stored, she would have a front row seat to my unraveling, that tipping point for me. And yes, the tears began inside the open hallway in Quest...right smack dab in the middle of it. Where are my facepalm emojis on this laptop?!?!
It's lame, I know. Reflecting on it now, and in the moments since Friday morning, I'm reminded of how much I am NOT in control...OF ANYTHING. I can do my best to plan wisely and be a good steward of my time, my health, my house, my home, our decisions for our family...but in the end, it is God who knows how things will shake out. It is God and God alone who knows and has a purpose for all of these things. I just have to keep trusting that it will be for His good in the end, you know? What a scary and comforting place to be, right? Scary because I am not in charge, but comforting because I am not in charge. God's got this.
I've been reading this amazing book by Lysa TerKeurst. It's called, It's Not Supposed to Be This Way. I'm not finished with it yet, but oh my, SO MUCH GOODNESS so far. She was talking about these hard things that we go through, and that yes, it kind of SUCKS (sorry...blunt), but that perhaps, we are missing the goodness of God through our struggles. That perhaps God's story THROUGH our heartache and struggles is the story that matters most. Not the end outcome, but how we live in the NOW, and how we anchor ourselves to God during these times. God's got this. He already knows how the story ends.
But still, so hard. Just so very hard sometimes.
One of my favorite shows of all time is Friends. The theme song begins with, "So no one told you life was gonna be this way..." But Jesus did. He said, "In this world you will have trouble. But take heart! I have overcome the world." Trying to take heart and trust right now. God pulled me back from plummetting into my scary abyss. It's all going to be okay. God's got this.
And He hasn't failed me yet.
Tuesday, January 15, 2019
Mayo Clinical Trial Update
I have had so many friends reach out and ask how things are going/how things went in December. I wanted to write a basic update about how things went at the first appointment, or at least continue the conversation since I last wrote.
The MRI was honestly the worst part of the first round of appointments. I was already nervous, not for the MRI itself, but just the whole experience. So, when I was called back to the lab area outside of the suite, I was a bit confused. I wasn't told ahead of time that contrast would be used...and while I have had contrast multiple times, it just caught me off guard. I am typically a "hard stick" when it comes to IVs, and I wasn't thrilled with the nurse who was trying to deal with my veins. Don't get me wrong. She was wonderfully kind but struggled with the IV nonetheless. The final product was a rather uncomfortable hand IV, but hey, anything has to be better than major surgery, right?
The next thing that caught me off guard was the fact that I would have to enter the machine head first. Also, Mayo doesn't use the open MRI because they feel it is not as accurate. I was prepared for the tiny tube, but not the fact that my head was entering first. When I walked in, one of the nurses just stood there...waiting for me as I stared at her, wondering why the pillow was in the wrong place. Reality set in, and I lay down where she pointed. As they quickly bustled around, clipping things to me and putting the cage type deal around my abdomen, I slipped into a panic attack. So ridiculous. I didn't start crying until the second nurse came over and asked the first nurse, "ummm what's the matter with her?" [so many facepalm emojis here] I was then embarrassed, but eventually calmed down.
The MRI was fine, and the nurse was very soothing to listen to, as opposed to the recorded voices telling you to "breathe in, breathe out, breathe in, NOW HOLD IT AND DON'T MOVE A MUSCLE." They played lovely Christmas music for me, and all was well. When I exited the tube, however, I got a little faint feeling and had to sit there and regroup. But, it was finally over.
My friends picked me up from the hospital, and we enjoyed an afternoon of Christmas shopping at IKEA, and then a late lunch at one of my favorite eateries, Newk's.
On Wednesday, December 5, Heath and I returned to Mayo to meet the other doctors and to begin the actual clinical trial. There was a lot of paperwork to complete, including consent forms and a series of questions about all the things...physical symptoms, emotional awareness, psychological questions, etc. The orthopedic surgeon informed us that the radiologist had been correct. There are actually three tumors in a bit of a line along my ribs. They can't completely tell if they are necessarily connected, but they can see that the largest of the three appears to be metabolically inactive. Because of this observation, they have decided to inject the steroids into the smallest, most active tumor. I was still feeling a bit nervous, even after the other research nurse so gently said to me, "Why are you nervous? What is there to be nervous of? Haven't you ever had a steroid injection? You'll be fine..." (insert eye rolling emoji here). Despite her encouragement, based on the MRI experience the day before, we all agreed that I would take a Valium to help ease the nerves. :)
The actual injection took place a few hours later. The radiologist who is helping with this part of the trial was incredible. She was very down to earth and had a teaching demeanor. She was very knowledgeable about the trial and the research behind it. It was nice hearing her "teach" this to the radiology tech who was helping with the ultrasound. It just clarified some questions I didn't even realize I had. She was so funny, in a super nerdy way. She was so excited that within my body, we have a natural, built-in control...two actually. She was just thrilled about this added bonus ;) I am so glad I can provide three tumors for them to study!
The injection itself was fairly straightforward. The radiologist first injected lidocaine to numb the whole area. Then, with the use of the ultrasound, they slowly injected the allotted amount of Kenalog into the chosen tumor. It was slightly painful, but more of a burning sensation than anything else. We waited for a few minutes after it was done, and then I went on my way!
For the first few days after the injection, I had a pretty dull but constant pain at the site. It hurt to twist or turn my body too quickly and basically felt like a deep bruise along my ribs. BUT, on the third day after the steroids, MY BODY WAS SHOCKINGLY PAIN-FREE. No more nerve pain, no more tumor pain, no more back pain...it was kind of glorious. This pain-free sensation lasted for about three weeks, maybe four. Then, the pain gradually returned. I can now feel my tumors constantly...when I breathe, when I cough, when I stand up or lie down, when I twist my core...it's kind of a pain, no pun intended :) It's so crazy. I didn't realize how much pain I had been in until it was gone. I am anxious to discuss this whole experience with the doctors.
Which leads me to my final point...tomorrow marks six weeks post-injection. We are driving up to
Jacksonville in the morning to meet with the doctors again, and then onto the second injection in the afternoon. I believe the oncologist will be in the meeting tomorrow, and I think we might be scheduling an appointment for me to meet with a genetic counselor. Have I mentioned that a small percentage of these tumors are hereditary? Most likely, mine isn't, but we want to rule it out. Just another layer to this complicated saga. :) We will cross that bridge when we get there.
Unfortunately, we won't know if this trial is working for quite some time. I am trying not to react to the constant pain and assume that the tumors are growing. The best part of this trial is that this is my path now. No need to really think about the other treatment options at this moment because I have committed to the trial for two years. Of course, if we see that it is definitely not working, we will jump ship and start something else anew. Who knows...maybe by the time this trial is over, there might be a cure, or at least more knowledge about these tumors!
I am trying desperately to maintain a positive attitude. There are hard days...especially when my body just hurts, but for no external reasons that others might see or understand. I'm grateful for my tribe of people...my husband, our families, our amazing friends, near and far, the phone calls, the texts, the snail mail...I feel so covered in prayers and encouragement. I keep reminding myself that this is just a season...that this, too, shall pass...we have weathered some crazy storms during our life together, and we will continue to weather this one, too. And hopefully, we will emerge at the end to a beautiful rainbow, one full of peace and maybe the understanding of why we have been in this storm in the first place.
Thanks for traveling alongside us.
The MRI was honestly the worst part of the first round of appointments. I was already nervous, not for the MRI itself, but just the whole experience. So, when I was called back to the lab area outside of the suite, I was a bit confused. I wasn't told ahead of time that contrast would be used...and while I have had contrast multiple times, it just caught me off guard. I am typically a "hard stick" when it comes to IVs, and I wasn't thrilled with the nurse who was trying to deal with my veins. Don't get me wrong. She was wonderfully kind but struggled with the IV nonetheless. The final product was a rather uncomfortable hand IV, but hey, anything has to be better than major surgery, right?
The next thing that caught me off guard was the fact that I would have to enter the machine head first. Also, Mayo doesn't use the open MRI because they feel it is not as accurate. I was prepared for the tiny tube, but not the fact that my head was entering first. When I walked in, one of the nurses just stood there...waiting for me as I stared at her, wondering why the pillow was in the wrong place. Reality set in, and I lay down where she pointed. As they quickly bustled around, clipping things to me and putting the cage type deal around my abdomen, I slipped into a panic attack. So ridiculous. I didn't start crying until the second nurse came over and asked the first nurse, "ummm what's the matter with her?" [so many facepalm emojis here] I was then embarrassed, but eventually calmed down.
The MRI was fine, and the nurse was very soothing to listen to, as opposed to the recorded voices telling you to "breathe in, breathe out, breathe in, NOW HOLD IT AND DON'T MOVE A MUSCLE." They played lovely Christmas music for me, and all was well. When I exited the tube, however, I got a little faint feeling and had to sit there and regroup. But, it was finally over.
My friends picked me up from the hospital, and we enjoyed an afternoon of Christmas shopping at IKEA, and then a late lunch at one of my favorite eateries, Newk's.
On Wednesday, December 5, Heath and I returned to Mayo to meet the other doctors and to begin the actual clinical trial. There was a lot of paperwork to complete, including consent forms and a series of questions about all the things...physical symptoms, emotional awareness, psychological questions, etc. The orthopedic surgeon informed us that the radiologist had been correct. There are actually three tumors in a bit of a line along my ribs. They can't completely tell if they are necessarily connected, but they can see that the largest of the three appears to be metabolically inactive. Because of this observation, they have decided to inject the steroids into the smallest, most active tumor. I was still feeling a bit nervous, even after the other research nurse so gently said to me, "Why are you nervous? What is there to be nervous of? Haven't you ever had a steroid injection? You'll be fine..." (insert eye rolling emoji here). Despite her encouragement, based on the MRI experience the day before, we all agreed that I would take a Valium to help ease the nerves. :)
The actual injection took place a few hours later. The radiologist who is helping with this part of the trial was incredible. She was very down to earth and had a teaching demeanor. She was very knowledgeable about the trial and the research behind it. It was nice hearing her "teach" this to the radiology tech who was helping with the ultrasound. It just clarified some questions I didn't even realize I had. She was so funny, in a super nerdy way. She was so excited that within my body, we have a natural, built-in control...two actually. She was just thrilled about this added bonus ;) I am so glad I can provide three tumors for them to study!
The injection itself was fairly straightforward. The radiologist first injected lidocaine to numb the whole area. Then, with the use of the ultrasound, they slowly injected the allotted amount of Kenalog into the chosen tumor. It was slightly painful, but more of a burning sensation than anything else. We waited for a few minutes after it was done, and then I went on my way!
For the first few days after the injection, I had a pretty dull but constant pain at the site. It hurt to twist or turn my body too quickly and basically felt like a deep bruise along my ribs. BUT, on the third day after the steroids, MY BODY WAS SHOCKINGLY PAIN-FREE. No more nerve pain, no more tumor pain, no more back pain...it was kind of glorious. This pain-free sensation lasted for about three weeks, maybe four. Then, the pain gradually returned. I can now feel my tumors constantly...when I breathe, when I cough, when I stand up or lie down, when I twist my core...it's kind of a pain, no pun intended :) It's so crazy. I didn't realize how much pain I had been in until it was gone. I am anxious to discuss this whole experience with the doctors.
Which leads me to my final point...tomorrow marks six weeks post-injection. We are driving up to
Jacksonville in the morning to meet with the doctors again, and then onto the second injection in the afternoon. I believe the oncologist will be in the meeting tomorrow, and I think we might be scheduling an appointment for me to meet with a genetic counselor. Have I mentioned that a small percentage of these tumors are hereditary? Most likely, mine isn't, but we want to rule it out. Just another layer to this complicated saga. :) We will cross that bridge when we get there.
Unfortunately, we won't know if this trial is working for quite some time. I am trying not to react to the constant pain and assume that the tumors are growing. The best part of this trial is that this is my path now. No need to really think about the other treatment options at this moment because I have committed to the trial for two years. Of course, if we see that it is definitely not working, we will jump ship and start something else anew. Who knows...maybe by the time this trial is over, there might be a cure, or at least more knowledge about these tumors!
I am trying desperately to maintain a positive attitude. There are hard days...especially when my body just hurts, but for no external reasons that others might see or understand. I'm grateful for my tribe of people...my husband, our families, our amazing friends, near and far, the phone calls, the texts, the snail mail...I feel so covered in prayers and encouragement. I keep reminding myself that this is just a season...that this, too, shall pass...we have weathered some crazy storms during our life together, and we will continue to weather this one, too. And hopefully, we will emerge at the end to a beautiful rainbow, one full of peace and maybe the understanding of why we have been in this storm in the first place.
Thanks for traveling alongside us.
Wednesday, December 05, 2018
A Health Update
For those of you who are late to this party, I “suffer" from a diagnosis of Desmoid tumors. I have had two of these tumors removed from my abdomen. You can read about that journey here and here. Now, I would like to update you on the continuation of that journey up to this point.
October 30, 2017 - 6-month follow-up scans - After a rather awkward and uncomfortable MRI experience with a man named Iqbal (and not a single other person in the entire radiology suite...???), I found out that while I hadn't experienced a tumor regrowth, my liver had herniated through the surgical mesh in my right abdominal wall. In the grand scheme of things, this wasn't a big deal. My surgeon said that although my tumor hadn't recurred, he was fairly confident that I would end up back in his office within three years with another tumor. He did not recommend any type of treatment for the hernia. He asked me to come back in a year for another scan, and sent me on my way.
December 11, 2017 - After a switch to a new primary care physician and extensive lab work, I was diagnosed with Hashimoto's Thyroiditis. Insert annoyed and exhausted emojis here. I started my first of what would become many thyroid medications, as well as a basket full of supplements and vitamins to help level some things out.
June 2018 - I started having heart palpitations...often enough to freak me out. I called a cardiologist and went in for some more tests. I had an EKG done, as well as a stress test. My EKG was irregular, but once the doctor started looking into my file more thoroughly, the consensus was that I needed to stop taking the current thyroid meds and switch to something different, so that's what we did.
July 2018 - After traveling all summer, I noticed that the right side of my abdomen (incision side) was hurting more frequently. Heath made a comment that he noticed how often I would put pressure there or that I was constantly touching it. I kind of just chalked it up to scar tissue and the fact that I have no muscles there and it just hurts sometimes. Just deal with it, right?
September 2018 - Something just didn't seem right, so I told Heath, my parents, and my MIL that I was going to petition to have my annual MRI moved up. I knew I had a break coming at the end of the month, so I would get it scheduled then.
September 26, 2018 - Within the network of hospitals that I use here in Orlando, there are only a few locations that offer the larger, open MRI that I prefer. I had an appointment scheduled for one such location that is over an hour from my house. I thought it was odd that I hadn't received a confirmation phone call or a reminder text regarding my appointment. Nonetheless, I made arrangements for the kids and started in that direction. I decided to call and just verify as I was driving, only to find out that the scheduler had made a mistake and scheduled me for a random day in October, not this day that we had discussed weeks prior. I was slightly annoyed, and made enough phone calls to get myself into another facility that same day. This MRI was MUCH more pleasant and totally less creepy than the one last year...phew!
October 9, 2018 - Follow-up appointment with my surgeon - I went by myself, mostly because I had this nagging voice in the back of my head telling me that my tumor was back and that I wanted to hear that information alone. I got all checked in and sat waiting for the doctor to review my scans. A med student came in first, and started asking me how I was doing, and how I was feeling (while giving me one of those cock-your-head-to-the-side-with-sympathy kinds of looks). I told him I was okay, but that there was still substantial pain, and a concern that something was off. He asked me if I understood exactly what type of tumor I was dealing with, and if I understood the likelihood of the recurrence. I just nodded my head, knowing where this conversation was going. He reminded me again of the statistics for Desmoid tumors, and I finally just said, "So my tumor is back, right?" And with his lovely Australian accent, he replied, "Yes. Two of them actually. But the doctor will be in shortly to talk to you about your options." And with that, he left the room.
I immediately texted Heath, my parents, and Jolene (my MIL), and simply sent a thumbs down emoji, and that my tumor had returned.
My surgeon came in and was very pleasant, but reminded me that we kind of knew this was a highly likely outcome. Somehow I managed to hold back my tears, but I tried to ask some hard questions. He walked me down the hallway to show me my MRI images and to point out the tumor growth. The tumors have returned along my rib line. They are located near the center of my abdomen, as opposed to my right side. Apparently, the larger of the two is wrapped around my lower ribs.
We talked through possible treatments, but he really couldn't endorse any of them (hormone therapy to reduce the tumor growth, chemotherapy or radiation, or surgery). He suggested that we wait six months and scan again to see what the tumors did. I really didn't like that idea. He mentioned that if we did move forward surgically, that he would have to send me to a thoracic surgeon because the next surgery would involve cutting through my ribs.
I left his office somewhat swirling with information. I called Heath and cried all the way from downtown Orlando to downtown Disney where I was able to have lunch with one of my best friends who was in town that week. I told him that I wanted to go ahead and meet the thoracic surgeon just to hear what my options were.
I returned home that afternoon, and life had to go back to normal. Pick up kids from school, after-school activities, entertaining house guests. No time to stop and really think about this more.
**REWIND. A few days prior to this appointment, a sweet friend of mine from high school texted to randomly ask how things were going and how my recovery was going. We hadn't spoken in a while, but I told her that I would know soon enough, and thank you for checking in on me. She messaged me again on October 24, just to find out the results of my MRI. When I shared the news with her, we started dialoguing about hospitals and doctors and second and third opinions when it comes to these big issues. She offered to do some research for me, because the Google situation can become pretty dangerous for me VERY QUICKLY. Out of the goodness of her heart, she started pulling information about Desmoid tumors, and even contacted the Desmoid Tumor Research Foundation on my behalf, asking about doctors in Florida who would be experienced with treating Desmoids. She even received a response with the name of a doctor at Mayo Clinic in Jacksonville who is a member of this foundation.
October 30, 2018 - Appointment with Cardio-Thoracic Surgeon in Orlando - This was a very heavy day. We met with the surgeon, who was perfectly nice...well, kind of mechanical and business-like at the beginning, but a very compassionate man at the end. He boasted about my referring surgeon, saying that he was a "surgeon's surgeon," and that he was at the top of his game. This gave me even more confidence in both doctors, because I trust my original surgeon so much. The thoracic surgeon then outlined the details for a very radical surgery, even more radical than the last. He spoke with great confidence about his plan to resect the entire tumor and to get great margins. He would replace whatever portion of my rib that was necessary to remove with titanium rods. We talked about what this surgery would look like, and more importantly...what the recovery would look like. He said it would take at least 12 weeks of very low activity for the titanium to strengthen and properly attach to my ribs. How on earth could I be sidelined for 12 weeks?!?!! Let's just say there were lots of tears and lots of tissues. He wanted to move fairly quickly and possibly schedule the surgery before the end of the calendar year. He also mentioned that any surgeon worth his or her salt is not afraid of second opinions, and he encouraged us to seek other doctors if we wanted to.
It was a very sobering walk to the car, where ultimately we just stood there and I cried. The thought of another ridiculously invasive surgery was just too overwhelming. I told Heath about the doctor at Mayo who my friend Hannah suggested. He told me I should try calling, or find out if I needed a referral. I Googled him, and made several phone calls that afternoon to Mayo. Turns out I didn't need a referral, and I left messages with his office.
October 31, 2018 - PHONE CALL FROM MAYO - I received a surprising call from Mayo Clinic (SO FAST)! They said that the doctor could see me the following MONDAY! WOW!! Talk about a whirlwind. I spent the next two days contacting the previous hospitals and doctors to obtain all of my records for the past few years. While I am grateful for the protection of our medical information, boy was it difficult to get all of this done in such a short time! I had to physically drive back up to the hospital area to collect discs and scans to have in hand for Mayo, in addition to overnighted materials and faxed records.
November 5, 2018 - Consultation at Mayo Clinic - Talk about a well-oiled machine, full of super friendly and kind people! Everything about our day included positive interactions with the hospital staff. We saw Dr. Attia, an oncologist-hematologist. He spoke with us for a solid hour. We spent time going over my record and my surgical history (turns out I’m not the only person who thinks my surgical history is a bit over the top). Anyway, after I caught him up to speed and told him the latest prognosis of the major surgery, he totally scoffed at it! He said that surgery is the absolute last option he would recommend at this time. He did, however, toss out some other ideas, including a form of chemo and a clinical trial I could be put into/on. It was still so much to process, but what a contrast to the appointment just five days prior! There were no tears during this appointment! While the new options were still intense and full of uncertainty, they didn't seem nearly as depressing/morbid/scary as the rib-removing surgery in Orlando.
Heath and I discussed these options for several days, and after about a week of trying to wrap my brain around them, the one that kept coming back to the top of the list was the clinical trial. This clinical trial would involve several rounds of steroid injections directly into my tumor. Then, we wait and watch for two years, with the end goal of either major shrinkage, or total eradication. I felt like the trial was the lesser of all of the evils. I decided that I would go forward and sign consent papers to get started as soon as possible.
The rest of the month of November was spent trying to pin down some lab results regarding that pesky thyroid as well as my adrenal system. One of the possible side effects of the trial is adrenal suppression, which I have already struggled with for the past year. The research nurse on the trial raised concern that I may not be the best candidate because there seem to be some "unstable" factors in my body. However, after lots of conversations and another round of lab work, all systems seem to be a "go."
YESTERDAY, December 4, 2018 - Baseline MRI at Mayo - Not only was this necessary for the trial data but the radiologist who will perform the first procedure suspects I may actually have three distinct tumors, so she wanted to have a fresh scan before the injection.
I have some of the best friends and family around. Two of my sweet friends offered to drive up to Jacksonville with me for this first appointment. That way, Heath would be able to work today and drive up tonight. After a rough morning in the MRI suite, we spent the afternoon at IKEA, laughing and having so much fun. My kids were taken care of today by one of my best friends and Heath's mom, who stayed behind to hold down the fort. My parents helped us get hotel reservations in Jacksonville. Everything fell into place!
TODAY, December 5, 2018 - Clinical Trial consent and first steroid injection - This morning I will have some baseline labs done, and then I will meet the principal investigator of the trial and his research nurse, Shari. We have been in phone communication for weeks, but we will finally meet in person. After the morning appointments, I am scheduled for the first injection. I have no idea what to expect, but I guess we will find out soon! I will return for the next round of steroids in six weeks, and then again in twelve weeks.
If you have made it this far, pat yourself on the back! That was a lot, and I am no stranger to details. It has definitely been a WHIRLWIND. I have been super overwhelmed, and at times, I think I have just gone into numb protection mode. The emotions catch up to me when I pause and let them. My primary doctor has been incredibly encouraging and supportive and has promised to help me get things stabilized again once the injections are over. This is a relief!
I haven’t found myself asking the question “why me?" But rather “what is God trying to teach me through this experience? “I already learned that I don’t like asking for help typically. I feel like I am doing a good job of being bolder and having more confidence in communicating my thoughts with others. I feel like I have excelled at pushing doctors to do another test or to take the next step because something isn’t right. Six years ago when I had some issues after Finley’s delivery, I was too chicken to push my doctor or nurse to look into the problem further. Now, I question everything. I am truly learning that I have to advocate for my own health and my own body because nobody else will.
October 30, 2017 - 6-month follow-up scans - After a rather awkward and uncomfortable MRI experience with a man named Iqbal (and not a single other person in the entire radiology suite...???), I found out that while I hadn't experienced a tumor regrowth, my liver had herniated through the surgical mesh in my right abdominal wall. In the grand scheme of things, this wasn't a big deal. My surgeon said that although my tumor hadn't recurred, he was fairly confident that I would end up back in his office within three years with another tumor. He did not recommend any type of treatment for the hernia. He asked me to come back in a year for another scan, and sent me on my way.
December 11, 2017 - After a switch to a new primary care physician and extensive lab work, I was diagnosed with Hashimoto's Thyroiditis. Insert annoyed and exhausted emojis here. I started my first of what would become many thyroid medications, as well as a basket full of supplements and vitamins to help level some things out.
June 2018 - I started having heart palpitations...often enough to freak me out. I called a cardiologist and went in for some more tests. I had an EKG done, as well as a stress test. My EKG was irregular, but once the doctor started looking into my file more thoroughly, the consensus was that I needed to stop taking the current thyroid meds and switch to something different, so that's what we did.
July 2018 - After traveling all summer, I noticed that the right side of my abdomen (incision side) was hurting more frequently. Heath made a comment that he noticed how often I would put pressure there or that I was constantly touching it. I kind of just chalked it up to scar tissue and the fact that I have no muscles there and it just hurts sometimes. Just deal with it, right?
September 2018 - Something just didn't seem right, so I told Heath, my parents, and my MIL that I was going to petition to have my annual MRI moved up. I knew I had a break coming at the end of the month, so I would get it scheduled then.
September 26, 2018 - Within the network of hospitals that I use here in Orlando, there are only a few locations that offer the larger, open MRI that I prefer. I had an appointment scheduled for one such location that is over an hour from my house. I thought it was odd that I hadn't received a confirmation phone call or a reminder text regarding my appointment. Nonetheless, I made arrangements for the kids and started in that direction. I decided to call and just verify as I was driving, only to find out that the scheduler had made a mistake and scheduled me for a random day in October, not this day that we had discussed weeks prior. I was slightly annoyed, and made enough phone calls to get myself into another facility that same day. This MRI was MUCH more pleasant and totally less creepy than the one last year...phew!
October 9, 2018 - Follow-up appointment with my surgeon - I went by myself, mostly because I had this nagging voice in the back of my head telling me that my tumor was back and that I wanted to hear that information alone. I got all checked in and sat waiting for the doctor to review my scans. A med student came in first, and started asking me how I was doing, and how I was feeling (while giving me one of those cock-your-head-to-the-side-with-sympathy kinds of looks). I told him I was okay, but that there was still substantial pain, and a concern that something was off. He asked me if I understood exactly what type of tumor I was dealing with, and if I understood the likelihood of the recurrence. I just nodded my head, knowing where this conversation was going. He reminded me again of the statistics for Desmoid tumors, and I finally just said, "So my tumor is back, right?" And with his lovely Australian accent, he replied, "Yes. Two of them actually. But the doctor will be in shortly to talk to you about your options." And with that, he left the room.
I immediately texted Heath, my parents, and Jolene (my MIL), and simply sent a thumbs down emoji, and that my tumor had returned.
My surgeon came in and was very pleasant, but reminded me that we kind of knew this was a highly likely outcome. Somehow I managed to hold back my tears, but I tried to ask some hard questions. He walked me down the hallway to show me my MRI images and to point out the tumor growth. The tumors have returned along my rib line. They are located near the center of my abdomen, as opposed to my right side. Apparently, the larger of the two is wrapped around my lower ribs.
We talked through possible treatments, but he really couldn't endorse any of them (hormone therapy to reduce the tumor growth, chemotherapy or radiation, or surgery). He suggested that we wait six months and scan again to see what the tumors did. I really didn't like that idea. He mentioned that if we did move forward surgically, that he would have to send me to a thoracic surgeon because the next surgery would involve cutting through my ribs.
I left his office somewhat swirling with information. I called Heath and cried all the way from downtown Orlando to downtown Disney where I was able to have lunch with one of my best friends who was in town that week. I told him that I wanted to go ahead and meet the thoracic surgeon just to hear what my options were.
I returned home that afternoon, and life had to go back to normal. Pick up kids from school, after-school activities, entertaining house guests. No time to stop and really think about this more.
**REWIND. A few days prior to this appointment, a sweet friend of mine from high school texted to randomly ask how things were going and how my recovery was going. We hadn't spoken in a while, but I told her that I would know soon enough, and thank you for checking in on me. She messaged me again on October 24, just to find out the results of my MRI. When I shared the news with her, we started dialoguing about hospitals and doctors and second and third opinions when it comes to these big issues. She offered to do some research for me, because the Google situation can become pretty dangerous for me VERY QUICKLY. Out of the goodness of her heart, she started pulling information about Desmoid tumors, and even contacted the Desmoid Tumor Research Foundation on my behalf, asking about doctors in Florida who would be experienced with treating Desmoids. She even received a response with the name of a doctor at Mayo Clinic in Jacksonville who is a member of this foundation.
October 30, 2018 - Appointment with Cardio-Thoracic Surgeon in Orlando - This was a very heavy day. We met with the surgeon, who was perfectly nice...well, kind of mechanical and business-like at the beginning, but a very compassionate man at the end. He boasted about my referring surgeon, saying that he was a "surgeon's surgeon," and that he was at the top of his game. This gave me even more confidence in both doctors, because I trust my original surgeon so much. The thoracic surgeon then outlined the details for a very radical surgery, even more radical than the last. He spoke with great confidence about his plan to resect the entire tumor and to get great margins. He would replace whatever portion of my rib that was necessary to remove with titanium rods. We talked about what this surgery would look like, and more importantly...what the recovery would look like. He said it would take at least 12 weeks of very low activity for the titanium to strengthen and properly attach to my ribs. How on earth could I be sidelined for 12 weeks?!?!! Let's just say there were lots of tears and lots of tissues. He wanted to move fairly quickly and possibly schedule the surgery before the end of the calendar year. He also mentioned that any surgeon worth his or her salt is not afraid of second opinions, and he encouraged us to seek other doctors if we wanted to.
It was a very sobering walk to the car, where ultimately we just stood there and I cried. The thought of another ridiculously invasive surgery was just too overwhelming. I told Heath about the doctor at Mayo who my friend Hannah suggested. He told me I should try calling, or find out if I needed a referral. I Googled him, and made several phone calls that afternoon to Mayo. Turns out I didn't need a referral, and I left messages with his office.
October 31, 2018 - PHONE CALL FROM MAYO - I received a surprising call from Mayo Clinic (SO FAST)! They said that the doctor could see me the following MONDAY! WOW!! Talk about a whirlwind. I spent the next two days contacting the previous hospitals and doctors to obtain all of my records for the past few years. While I am grateful for the protection of our medical information, boy was it difficult to get all of this done in such a short time! I had to physically drive back up to the hospital area to collect discs and scans to have in hand for Mayo, in addition to overnighted materials and faxed records.
November 5, 2018 - Consultation at Mayo Clinic - Talk about a well-oiled machine, full of super friendly and kind people! Everything about our day included positive interactions with the hospital staff. We saw Dr. Attia, an oncologist-hematologist. He spoke with us for a solid hour. We spent time going over my record and my surgical history (turns out I’m not the only person who thinks my surgical history is a bit over the top). Anyway, after I caught him up to speed and told him the latest prognosis of the major surgery, he totally scoffed at it! He said that surgery is the absolute last option he would recommend at this time. He did, however, toss out some other ideas, including a form of chemo and a clinical trial I could be put into/on. It was still so much to process, but what a contrast to the appointment just five days prior! There were no tears during this appointment! While the new options were still intense and full of uncertainty, they didn't seem nearly as depressing/morbid/scary as the rib-removing surgery in Orlando.
Heath and I discussed these options for several days, and after about a week of trying to wrap my brain around them, the one that kept coming back to the top of the list was the clinical trial. This clinical trial would involve several rounds of steroid injections directly into my tumor. Then, we wait and watch for two years, with the end goal of either major shrinkage, or total eradication. I felt like the trial was the lesser of all of the evils. I decided that I would go forward and sign consent papers to get started as soon as possible.
The rest of the month of November was spent trying to pin down some lab results regarding that pesky thyroid as well as my adrenal system. One of the possible side effects of the trial is adrenal suppression, which I have already struggled with for the past year. The research nurse on the trial raised concern that I may not be the best candidate because there seem to be some "unstable" factors in my body. However, after lots of conversations and another round of lab work, all systems seem to be a "go."
YESTERDAY, December 4, 2018 - Baseline MRI at Mayo - Not only was this necessary for the trial data but the radiologist who will perform the first procedure suspects I may actually have three distinct tumors, so she wanted to have a fresh scan before the injection.
I have some of the best friends and family around. Two of my sweet friends offered to drive up to Jacksonville with me for this first appointment. That way, Heath would be able to work today and drive up tonight. After a rough morning in the MRI suite, we spent the afternoon at IKEA, laughing and having so much fun. My kids were taken care of today by one of my best friends and Heath's mom, who stayed behind to hold down the fort. My parents helped us get hotel reservations in Jacksonville. Everything fell into place!
TODAY, December 5, 2018 - Clinical Trial consent and first steroid injection - This morning I will have some baseline labs done, and then I will meet the principal investigator of the trial and his research nurse, Shari. We have been in phone communication for weeks, but we will finally meet in person. After the morning appointments, I am scheduled for the first injection. I have no idea what to expect, but I guess we will find out soon! I will return for the next round of steroids in six weeks, and then again in twelve weeks.
If you have made it this far, pat yourself on the back! That was a lot, and I am no stranger to details. It has definitely been a WHIRLWIND. I have been super overwhelmed, and at times, I think I have just gone into numb protection mode. The emotions catch up to me when I pause and let them. My primary doctor has been incredibly encouraging and supportive and has promised to help me get things stabilized again once the injections are over. This is a relief!
I haven’t found myself asking the question “why me?" But rather “what is God trying to teach me through this experience? “I already learned that I don’t like asking for help typically. I feel like I am doing a good job of being bolder and having more confidence in communicating my thoughts with others. I feel like I have excelled at pushing doctors to do another test or to take the next step because something isn’t right. Six years ago when I had some issues after Finley’s delivery, I was too chicken to push my doctor or nurse to look into the problem further. Now, I question everything. I am truly learning that I have to advocate for my own health and my own body because nobody else will.
I am incredibly grateful for God‘s timing to send the right people to ask me the right questions at just the right moment. Had it not been for my sweet friend Hannah, I don’t know that I would have found or been bold enough to ask to see this doctor at Mayo, and here we are, just a little over a month later, participating in a clinical trial that might just solve my tumor issue.
Thank you for reading about our journey, and we appreciate your prayers and encouragement as we journey on!
Thank you for reading about our journey, and we appreciate your prayers and encouragement as we journey on!
Sunday, June 04, 2017
Post Surgery Update
I am so grateful for all of the support, encouragement, prayers, text messages, phone calls, visits, meals...everything. God has richly blessed me and my family with a beautiful tribe of people near and far that we are so lucky to call our friends and family. This experience has been frustrating and stressful, but also humbling and encouraging at the same time.
Wednesday afternoon, April 19th, after paying a small fortune to the hospital and also taking care of my pre-op blood work, I had a near panic attack regarding the surgery itself and what it entailed (the surgical mesh, the recovery, this void in my abdomen, to name a few). I called the doctor's office, in hopes of speaking to a nurse, but got to speak with my surgeon himself! He patiently re-explained to me what his plan was, how the surgical mesh would work, and also assured me that this was the best and only option for what we were dealing with. He is so fabulous, and I am so thankful we were referred to his office.
Wednesday afternoon, April 19th, after paying a small fortune to the hospital and also taking care of my pre-op blood work, I had a near panic attack regarding the surgery itself and what it entailed (the surgical mesh, the recovery, this void in my abdomen, to name a few). I called the doctor's office, in hopes of speaking to a nurse, but got to speak with my surgeon himself! He patiently re-explained to me what his plan was, how the surgical mesh would work, and also assured me that this was the best and only option for what we were dealing with. He is so fabulous, and I am so thankful we were referred to his office.
My surgery was Friday morning, April 21st. Our arrival time got pushed back by an hour, so we didn't have to leave our house as early as we had originally planned. We arrived and waited to be taken into the triage area. My surgeon came out, dressed in a suit and tie, and greeted us in the waiting area. He's just so friendly and calming (and a few might say he is pretty "hunky"...ahem...my grandma). Anyway, a nurse came and took us back to start getting prepped. She took vitals, and then was successful in putting in the IV on the first try, which is apparently rare for me now. She was so pleasant and kind, so that was a nice start to the day.
Our doctor came into the triage area with a med student and told us he would see me in the OR. He told Heath where he could wait and that he would come and find him as soon as the surgery was over. Heath asked if he would pray with us, and much to my surprise, he did :)
Soon, my little curtained-off area became very "busy." The surgical fellow from my initial consultation appointment stopped by, said hello, and then left. Then the anesthesiologist and his nurse stopped by and talked to me about the drugs. I remember from the previous two surgeries that the anesthesiologist had offered me a "happy cocktail" to help me calm down before heading into the surgeries. I gracefully declined them on both occasions because even in my stressed out state, I wanted to be able to remember walking (being pushed on a gurney) into the OR mostly due to sheer fascination. This time, however, as I felt the waves of panic and fear coming over me, I asked him for something to help calm me down. There was a super nice woman there (I can't remember if she was the nurse anesthetist or a nurse who would be in the surgery) who kept telling me it was going to be an easy surgery and that if I hadn't been nervous and anxious, she would have thought something was wrong with me. She said it was totally normal to be having the heart palpitations I had been having and that everything was going to be fine. Thank heavens for encouraging people just at the moment you need them.
I don't remember much after that. They must have slipped me the happy juice shortly thereafter because I don't even remember being wheeled into an OR. Nor do I remember waking up in post-op/recovery. Honestly, my next memory was at the shift change that night...sometime around 7 pm. I have no idea who my nurse was during that afternoon, but I remember meeting Rashni, my nighttime nurse Friday night. She was very sweet, and had a fairly heavy accent, because I do remember not always understanding her. Perhaps that was due to the heavy amount of pain killers?!
I spent the next six days in the hospital. Overall, I had wonderful nurses who were kind and attentive. I had one super awkward and not-so-great male nurse; we just didn't really gel personality-wise, and he spent more time hitting on my friend (offering her ginger ale on the rocks and asking if she would be returning the next day to visit) than paying attention to my case and my pain meds :) We kindly asked the charge nurse for him to be placed on someone else's case the next day.
My surgery left me with an eight inch incision across my upper right abdomen, two JP drains (oh so fun), and an abdominal binder to help hold things together. My surgeon removed a large portion of my abdominal wall...5.5 inches by 3.5 inches and about 2.5 inches in thickness. The tumor itself was the full thickness of the abdominal wall, but thankfully had not adhered to my intestines. His goal was to cut out the tumor and the surrounding tissue so that the likelihood of it returning was low.
As I was waiting to be discharged, my doctor and two of his med students came to my room to discuss a few things, including the pathology report. The good news is that the tumor was benign, a fibromatosis/Desmoid tumor as he had suspected from the beginning. The bad news, however, is that he was unable to get clean margins after all, stating that the tumor was touching my lower ribs. He mentioned that he didn't think it would be advantageous to remove portions of my ribs (thank you), but that there were microscopic fibers of the tumor left behind on not only my ribs, but also at the bottom of the sample he removed. What exactly does this mean? Well, it means that the tumor can still come back. But, to be honest, even if he had obtained clean margins, the nature of these tumors is so sporadic and unpredictable that it could have returned on its own anyway.
That was kind of a "Debbie Downer" moment for me as I was leaving to go home. All of this stress and worry and PHYSICAL PAIN for what seemed like nothing. Enter the bombardment of crazy thoughts about what happens next when it returns, and how will he remove it again if he has already removed so much? Will we have to explore chemotherapy or radiation? What will that be like?! I immediately asked him what we are going to do if it grows back. His response was so laid back. He said that for now, I needed to worry about learning to walk again, and just concentrate on healing and recovering, and that basically we will cross that bridge when we get there. Have I already mentioned how great he is?
So, that is what I have been doing, or trying to do at least. It has been incredibly challenging for me to recover. I am not a sidelines type of person (unless we are dealing with sports, in which case I should ALWAYS be a sidelines type of person). I don't love sitting around waiting for things to be done for me. We have been so blessed by friends and family who have brought meals, come over to help with the kids and also to help with things like vacuuming or hanging things on my walls. Did I mention that I hadn't finished unpacking before the surgery? We have unopened boxes still lying around and things of that nature just staring at me and I can't do anything about it. It iskind of driving me crazy. My mom has been here since my surgery, basically taking care of the kids and their every need during the day until Heath gets home at night. I have fairly strict lifting restrictions, so holding or carrying Kenton is kind of out of the question. I had a home health nurse visit a few times to check my vitals and the drains, and also a physical therapist, but we decided that until the lifting restrictions are lifted, it is kind of waste of time and resources for now.
I have seen my doctor twice since the surgery, the first time being about ten days post op, and the second visit about three and a half weeks post op. Other than nearly passing out during the removal of the first drain, he said everything else seemed to be healing and moving in the right direction, and that he didn't need to see me for six months unless I needed something or was worried about something. At that time, which falls right before Thanksgiving, he wants an MRI to check my abdomen for any regrowth. Hopefully I won't suspect any more tumor formation between now and then, and we will have a clean MRI in November. My greatest risk right now is a hernia. I have to be so careful not to lift things, which let's be honest, is almost IMPOSSIBLE, especially when there are little ones. Also, sneezing, coughing and laughing too much are THE WORST as far as pain-inducing scenarios :)
I have included a few photos below. Nothing graphic by any means, but I did have my doctor help me understand exactly what was removed by having him draw on a Google image I found of the abdomen. #visuallearner #nerd
Thank you so much for all of the care and concern. I'm so grateful for our tribe. Bless you for making it through yet another lengthy blog post. Hopefully the pictures helped :)
I don't remember much after that. They must have slipped me the happy juice shortly thereafter because I don't even remember being wheeled into an OR. Nor do I remember waking up in post-op/recovery. Honestly, my next memory was at the shift change that night...sometime around 7 pm. I have no idea who my nurse was during that afternoon, but I remember meeting Rashni, my nighttime nurse Friday night. She was very sweet, and had a fairly heavy accent, because I do remember not always understanding her. Perhaps that was due to the heavy amount of pain killers?!
I spent the next six days in the hospital. Overall, I had wonderful nurses who were kind and attentive. I had one super awkward and not-so-great male nurse; we just didn't really gel personality-wise, and he spent more time hitting on my friend (offering her ginger ale on the rocks and asking if she would be returning the next day to visit) than paying attention to my case and my pain meds :) We kindly asked the charge nurse for him to be placed on someone else's case the next day.
My surgery left me with an eight inch incision across my upper right abdomen, two JP drains (oh so fun), and an abdominal binder to help hold things together. My surgeon removed a large portion of my abdominal wall...5.5 inches by 3.5 inches and about 2.5 inches in thickness. The tumor itself was the full thickness of the abdominal wall, but thankfully had not adhered to my intestines. His goal was to cut out the tumor and the surrounding tissue so that the likelihood of it returning was low.
As I was waiting to be discharged, my doctor and two of his med students came to my room to discuss a few things, including the pathology report. The good news is that the tumor was benign, a fibromatosis/Desmoid tumor as he had suspected from the beginning. The bad news, however, is that he was unable to get clean margins after all, stating that the tumor was touching my lower ribs. He mentioned that he didn't think it would be advantageous to remove portions of my ribs (thank you), but that there were microscopic fibers of the tumor left behind on not only my ribs, but also at the bottom of the sample he removed. What exactly does this mean? Well, it means that the tumor can still come back. But, to be honest, even if he had obtained clean margins, the nature of these tumors is so sporadic and unpredictable that it could have returned on its own anyway.
That was kind of a "Debbie Downer" moment for me as I was leaving to go home. All of this stress and worry and PHYSICAL PAIN for what seemed like nothing. Enter the bombardment of crazy thoughts about what happens next when it returns, and how will he remove it again if he has already removed so much? Will we have to explore chemotherapy or radiation? What will that be like?! I immediately asked him what we are going to do if it grows back. His response was so laid back. He said that for now, I needed to worry about learning to walk again, and just concentrate on healing and recovering, and that basically we will cross that bridge when we get there. Have I already mentioned how great he is?
So, that is what I have been doing, or trying to do at least. It has been incredibly challenging for me to recover. I am not a sidelines type of person (unless we are dealing with sports, in which case I should ALWAYS be a sidelines type of person). I don't love sitting around waiting for things to be done for me. We have been so blessed by friends and family who have brought meals, come over to help with the kids and also to help with things like vacuuming or hanging things on my walls. Did I mention that I hadn't finished unpacking before the surgery? We have unopened boxes still lying around and things of that nature just staring at me and I can't do anything about it. It is
I have seen my doctor twice since the surgery, the first time being about ten days post op, and the second visit about three and a half weeks post op. Other than nearly passing out during the removal of the first drain, he said everything else seemed to be healing and moving in the right direction, and that he didn't need to see me for six months unless I needed something or was worried about something. At that time, which falls right before Thanksgiving, he wants an MRI to check my abdomen for any regrowth. Hopefully I won't suspect any more tumor formation between now and then, and we will have a clean MRI in November. My greatest risk right now is a hernia. I have to be so careful not to lift things, which let's be honest, is almost IMPOSSIBLE, especially when there are little ones. Also, sneezing, coughing and laughing too much are THE WORST as far as pain-inducing scenarios :)
I have included a few photos below. Nothing graphic by any means, but I did have my doctor help me understand exactly what was removed by having him draw on a Google image I found of the abdomen. #visuallearner #nerd
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| The blood typing bracelet they put on me before my surgery, threatening me hefty charges or surgery cancellation if I tampered with it or removed it! Crazy. |
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| A lovely gif we received the morning of the surgery. Nothing like a little comedic relief in the midst of a stressful moment. |
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| Lots of encouraging text messages and phone calls the morning of my surgery. Did I already mention that I have the best friends? There are so many more saved on my phone, but for whatever reason, they got a bit messed up when I tried to transfer them here. |
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| My favorite visitors in the hospital (no offense to the others) 😍😍 |
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| IV specialist was called in to fix my IV on day four, after I convinced my nurse that the IV was burning every time I received my meds. This lady was so great, and also told me that from here on out, I should request the IV A-team every time because I'm such a hard stick. :) I was sold on that suggestion. |
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| At home, snuggling my babies on the "good side" as Finley calls it. Kenton knows that I have a boo-boo, and that's about the extent of his understanding of the situation. |
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| Because I'm weird, this was one of the things I insisted on accomplishing the night before the surgery. Boy am I glad, too, because I have been staring at it for five weeks now :) At least I have something fun to look at (besides unpacked boxes and things I can't put away because of their weight). |
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| These were a couple of the images I took to my doctor. The first one kind of illustrates a cross section of the layers in the abdominal wall. He outlined where the tumor was, and then kind of added what would be my bowels/intestines, showing that the tumor thankfully had not adhered to any major organs, and was contained to the abdominal wall. The second picture shows where the tumor was (the inside circle with the lines in it), and then the portion of my abdomen that he removed (the larger circle). At the top of the outer circle, you see my ribs, where microscopic fibers of the tumor remain. There are also microscopic fibers of the tumor remaining at the bottom of the outer circle. |
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| Perhaps the biggest thing I have done since coming home from the hospital...I BOUGHT A CAR ONLINE, from the comfort of my trusty recovery recliner :) |
Wednesday, April 19, 2017
My Brief Medical Journey
The title of this post is a lie. This is rather lengthy. I tried to keep it as concise as possible.
A timeline of sorts...
November 2014 (Black Friday, to be specific) - I was about 25 weeks pregnant with Kenton, and we had just celebrated Thanksgiving with Heath's family. We had also spent that Friday out on the ranch with friends. I came home that night and shortly after eating dinner, I suddenly started to feel like I couldn't breathe. I couldn't take deep breaths, and it felt like someone had put a vice grip around my rib cage. My entire belly seemed to seize up, making all movement very uncomfortable. I was sweating, and panicking, and at one point I remember lying on my mother-in-law's tile floor to cool off while simultaneously vomiting. I tried lying down, going to the bathroom, walking around, and eventually crawling around. This whole episode lasted for over two hours. Heath was ready to take me to the hospital if it hadn't settled. Finally, it seemed to subside, my belly relaxed, and I was able to breathe again. I was determined to call the midwife when I returned to Tallahassee.
The following Monday, I called. They told me over the phone that it simply sounded like Braxton Hicks contractions, to which I thought, "are you kidding me?!?!" They didn't seem concerned, and basically told me to wait until my next scheduled appointment, which wasn't for another ten or twelve days. In the meantime, I talked to a few of my mommy friends, and one of them adamantly proclaimed that it was my gallbladder, and that I needed to demand that they look into it. So, at my appointment the next week, I mentioned it. The midwife seemed skeptical, but agreed to refer me for an ultrasound of my abdomen to rule out the gallbladder. It was early December at this point.
A few days after the ultrasound, I received a call confirming that I did in fact have a few gallstones, and that I would be referred to a surgeon after Christmas.
January 2015 - I met with the general surgeon, whose office was conveniently located right next to my OBGYN :) He was super nice, and basically told me that I could try all of the home remedies I wanted, and that I could stop eating everything that was thought to be a trigger food, but that in the end, gallstones never go away, and I was a ticking time bomb no matter how you looked at the situation: either I was going to have another gallstone attack, or I was going to have a baby. At this point, I was 32 weeks pregnant. He said it would be optimal to deliver the baby first, and then schedule a non-emergent, planned laproscopic surgery to remove the gallbladder. So, that was the plan.
February 2015 (the night of the Super Bowl) - Gallstone attack #2. It was rough, and scary, but at least I knew what it was, and since I knew it wasn't a heart attack, I waited for it to pass, and went on with life.
March 2015 - Kenton was born, safe and sound, via c-section. I was convinced that my gallstones were pregnancy related, and that they would just disappear...
April 2015 - I was wrong. I had gallstone attack #3 on a Tuesday night. Heath was in Orlando, I was in Tallahassee by myself with the two babies and my mom, and I was scared to death. I called and woke Heath up, and he ended up driving to Tallahassee the next morning, just for moral support. I called the surgeon's office that next morning, and scheduled my surgery to remove the gallbladder for May 13th.
Five days later, a Saturday, gallstone attack #4 hit, and it was by far the worst. It got so bad that Heath took me to the ER, with our six-week-old baby in tow. By the time I was put in a triage room, it was nearly midnight. Around 2 am, my surgeon stopped by and said that he happened to be on call, and that he would go ahead and take out the gallbladder the next day and put an end to this :) YAY!
At around noon on April 26, my gallbladder was no longer an issue, and we were ready to move on :)
August 2015 - Just shy of six months post op (why is that such a magical number for surgical recovery?), something didn't feel right. I called my doctor, told him that something seemed off, and asked for an appointment. He assured me things were fine, and that it takes six months to completely heal. To pacify me, they scheduled a CT to double check. Everything came back clean, and he said it was just things shifting from having the baby and having the gallbladder removed. It would be okay.
May 2016 - While doing some abdominal exercises on the floor, I felt a jolt of pain on my right side. When I put my hand there, I felt something. A mass. It was small, but it was definitely there. I called my doctor and asked for another follow-up. He examined me, said he could feel something, but thought it was most likely scar tissue, or a mass of fatty tissue and scar tissue combined. They ordered another CT to be done, just to double check.
June 2016 - CT scan results came back clean again, but because my surgeon had felt what I was talking about, he suggested an exploratory surgery, to be done whenever, because they weren't really concerned about it being anything other than scar tissue. We scheduled the surgery for when I returned from our summer in Illinois, August 19th.
August 2016 - I spent too much time on Google prior to my surgery, and had also taken up the habit of watching Grey's Anatomy (which I know is completely dramatized and crazy), and basically gave myself a few panic attacks leading up to this surgery. Do yourself a favor and don't Google abdominal masses...you'll find all kinds of scary things out there. I was convinced it was a tumor, possibly a rare pancreatic tumor, and that things were going to be very bad. I also worried that maybe it was a surgical hernia, and that he would just have to fix that. Or possibly just scrape out a bunch of scar tissue.
My surgery was scheduled for 2 pm that Friday, but I ended up getting bumped behind a few emergent cases that had come in. I remember going down into the pre-op area around 6 pm and meeting with the anesthesiologist (who was the same guy from the previous April). The nurse in pre-op attended the church we sporadically attended in Tallahassee after we left FCC. I remember my surgeon coming in and chatting with me, and I remember asking him what his plans were if the scary lump happened to be either a) scar tissue, b) a hernia, or c) a scary tumor. He responded by telling me that a tumor was so far from his scope of possibility, and I remember crying tears of relief. He held my hand and said it would be fine.
The next thing I remember was slowly waking up in post-op and hearing someone in the distance saying something about a spindle cell tumor. She kept saying that the surgery was only supposed to be an hour, and that it ended up being almost three. I remember asking her what time it was, and then in my groggy state, deducing that she was talking about me. I remember panicking and asking her if he found a tumor and what was happening, and then going back to sleep.
Later that night, I was back in a room, and Heath was there. He had taken my phone from me, and was being evasive. I told him I had heard something about a tumor and I wanted to google what it was (see, it's an addiction). My surgeon came by (I feel like it was close to midnight) and explained what he had found. He referred to it as a spindle cell tumor, about the size of an egg, and that he rarely saw this type of tumor. He guessed that by the pattern or shape or behavior of the tissue, that we were dealing with a benign tumor, but that they would obviously send it off to pathology for further investigation. He assured us that he was confident that he had gotten clean margins, and that it was gone. I stayed in the hospital through the weekend, and began the super slow journey of recovery.
***In the meantime, our house had flooded over the summer while we were gone, and we had to drive back to Orlando to stay with his parents. You can read about that whole mess here.
We called the surgeon's office five or six days later to find out about the results of the biopsy, only to find out that my specimen had been sent elsewhere for further testing...ugh. Okay.
Another week went by with no word from anyone. I called again, and the results lady (not sure of her title) started digging around to find out why my pathology report still hadn't been returned. She found out that my sample had been sent to Shands @ UF to a special soft tissue masses pathologist. She also informed me that he was notorious for being slow :)
THREE WEEKS went by, and I was in Illinois visiting at a friend's house, and I actually missed the call from the hospital. My nurse left a message for me explaining that the results indicated a BENIGN mass. I cried, and was finally able to stop panicking.
October 2016 - It was about six weeks post-op, and the kids and I spent a week with my parents and my grandma at her condo in Siesta Key. While we were there, Finley and I were playing in the pool, and after she jumped off my shoulders, she kicked my abdomen, right at my incision site, while swimming away. I remember doubling over in pain, and immediately started panicking about internal sutures being affected. A few days later, I felt a lump there. So, of course I called my doctor. The nurse told me it had barely been six weeks, and to give it ten days to two weeks and see how I felt after that.
Those two weeks went by, and I was still in substantial pain. Obviously I could still move, but any bend in my core (which happens WAY MORE than I ever thought) hurt like crazy. I called them back, and I was called in for an exam.
I told them I was scared and worried and concerned, and they assured me things were fine. But again, they would order a CT scan for good measure.
Surprise, surprise, the CT came back clean :) At this point, it was mid-November. We decided to wait until after Christmas and re-assess.
January 2017 - I went back for my millionth follow-up, and he asked if it was the same, better, or worse. I told him it was the same, and that there was definitely a palpable lump underneath the previous incision. He could feel the lump, and he was also surprised when I winced in pain each time he touched the area. He sat there at the exam table just pouring over my file. He seemed stumped. So, he ordered an MRI.
February 2, 2017 - MRI in Tallahassee. At this point, we had made the fast and hard decision to move back to Saint Cloud. So, this MRI took place two days before our first of several moving trips took place.
February 13, 2017 - My new nurse BFF called and asked if I could talk. I immediately knew that something was going on, because she wanted to make sure I could talk for a few minutes. She told me that the MRI confirmed a mass in my abdomen (duh, I had been saying this for months now), and that my surgeon wanted to do a CT guided needle biopsy. Okay. Perfect. Sign me up, let's do this! We scheduled it for a weekend that we were going back to Tallahassee to continue packing up the house there. She and I were officially on a first name basis at this point :)
February 24, 2017 - I traveled to Tallahassee the night before the biopsy by myself. Heath and the kids were going to join me after the procedure and take me home. I got to the hospital impressively early, got myself checked in, and waited to be admitted. I was taken to a room where a not-so-fabulous nurse had to get my IV started and what not. She flipped out on me because I hadn't removed any of my rings (no one told me to do that) and also because I was a hard stick. She bruised both my hands and my left wrist, I cried, and then she got all weird on me because I was crying. NOT A GOOD START TO THE DAY.
I was taken down to the CT area around 9 am, and sat there alone waiting for this to get started. The radiologist came in, sat down, and started asking me about my surgical history and how I ended up where I was. He was very honest, and informed me that he had only just found out that I had already had a tumor resected from my abdomen less than six months prior. He said that for whatever reason, my entire chart and history didn't make it into his hands until that very morning. He expressed concern for the biopsy procedure, and told me that he felt that it would be doing more harm than good to do the biopsy. He told me that he recommended I move to a tertiary location to be looked at by a specialist. He felt that what we were/are dealing with is a Desmoid tumor. He was so incredibly patient. He went back to the pathologist and double checked my scans and the surgical reports from August, and again confirmed that they both thought we were dealing with this type of tumor.
*A Desmoid tumor is typically a benign but locally aggressive tumor. I've done lots of research on these bad boys, and you can too. Just google it :)
Anyway, this radiologist was so humble and just so great. He suggested that I asked to be referred elsewhere, to a hospital like Shands, MAYO, Moffitt, UAB, or Emory. The sound of Mayo Clinic obviously gave me heart palpitations, but, I felt like this was the right direction to go. He left the room one more time and returned with a business card and gave me his PERSONAL cell phone number. He said to call him if I had any problems, or if I hadn't heard from my surgeon's office by a certain day. We cancelled the biopsy, I returned to my hospital room, packed up, got in my car, and cried a whole lot.
March 1, 2017 - My nurse BFF called me just before the deadline I had set before I reached out to the radiologist. She told me that my surgeon was confused and a bit frustrated that I hadn't had the biopsy. I shared with her everything that had happened that morning, and she said I would be hearing from my surgeon.
*Please know that I love this nurse, I'm grateful for all of her help, and that I thought/think my surgeon is a great guy and a very personable doctor. No harm, no foul. But apparently my crazy abdominal mess requires someone with a more detailed specialization.
March 2, 2017 - Nurse BFF called back and told me that my surgeon spoke to a reconstructive plastic surgeon in Tallahassee who recommended that I be referred to a doctor in Orlando. PERFECT! We live here now!
March 14, 2017 - Heath and I met my new surgeon. He was INCREDIBLE. He spent what felt like an hour talking to us and outlining a plan. He specializes in soft tissue sarcomas, and also believes this is a Desmoid tumor we are dealing with. These tumors are rare, but when they do occur, they tend to be found in women in their thirties who have experienced pregnancy. They are hormonally fed, and can occur entirely sporadically or be a genetic glitch. He explained that he believed the mass that had been removed in August was the same type of tumor, and that because my surgeon was caught off guard by its appearance, that he most likely did not remove every single tentacle of the mass. Like I mentioned before, these tumors are locally aggressive. If his guess is correct, this tumor took less than six weeks to regenerate and more than double in size. According to the MRI, it is roughly four inches in length and about two inches in diameter, in an oval shape. He said that based on the scans, he doesn't think this tumor has adhered to any organs at this point, and that it is only within the abdominal wall and connective tissues/muscles.
He recommended surgery to remove the tumor and all of its surrounding tissue, and that he will replace it with surgical mesh. I asked if we could wait until after my brother's wedding and after Easter, and he said that should be fine. We asked lots of questions, and he was very knowledgeable regarding this type of tumor. He gave me his card and told him to call with any questions I might have.
March 21, 2017 - I called his office, and HE ACTUALLY CALLED ME BACK. We "chatted" for almost twenty minutes about the whole surgery, the recovery, the outcomes, everything. I was floored.
April 19, 2017 - Pre-op admissions and lab work
April 21, 2017 - The big surgery at 7:30 am in Orlando.
If you have made it this far, you deserve a reward. I can offer to mail you a book mark, because you obviously like reading :) Thank you for your prayers and concern.
A timeline of sorts...
November 2014 (Black Friday, to be specific) - I was about 25 weeks pregnant with Kenton, and we had just celebrated Thanksgiving with Heath's family. We had also spent that Friday out on the ranch with friends. I came home that night and shortly after eating dinner, I suddenly started to feel like I couldn't breathe. I couldn't take deep breaths, and it felt like someone had put a vice grip around my rib cage. My entire belly seemed to seize up, making all movement very uncomfortable. I was sweating, and panicking, and at one point I remember lying on my mother-in-law's tile floor to cool off while simultaneously vomiting. I tried lying down, going to the bathroom, walking around, and eventually crawling around. This whole episode lasted for over two hours. Heath was ready to take me to the hospital if it hadn't settled. Finally, it seemed to subside, my belly relaxed, and I was able to breathe again. I was determined to call the midwife when I returned to Tallahassee.
The following Monday, I called. They told me over the phone that it simply sounded like Braxton Hicks contractions, to which I thought, "are you kidding me?!?!" They didn't seem concerned, and basically told me to wait until my next scheduled appointment, which wasn't for another ten or twelve days. In the meantime, I talked to a few of my mommy friends, and one of them adamantly proclaimed that it was my gallbladder, and that I needed to demand that they look into it. So, at my appointment the next week, I mentioned it. The midwife seemed skeptical, but agreed to refer me for an ultrasound of my abdomen to rule out the gallbladder. It was early December at this point.
A few days after the ultrasound, I received a call confirming that I did in fact have a few gallstones, and that I would be referred to a surgeon after Christmas.
January 2015 - I met with the general surgeon, whose office was conveniently located right next to my OBGYN :) He was super nice, and basically told me that I could try all of the home remedies I wanted, and that I could stop eating everything that was thought to be a trigger food, but that in the end, gallstones never go away, and I was a ticking time bomb no matter how you looked at the situation: either I was going to have another gallstone attack, or I was going to have a baby. At this point, I was 32 weeks pregnant. He said it would be optimal to deliver the baby first, and then schedule a non-emergent, planned laproscopic surgery to remove the gallbladder. So, that was the plan.
February 2015 (the night of the Super Bowl) - Gallstone attack #2. It was rough, and scary, but at least I knew what it was, and since I knew it wasn't a heart attack, I waited for it to pass, and went on with life.
March 2015 - Kenton was born, safe and sound, via c-section. I was convinced that my gallstones were pregnancy related, and that they would just disappear...
April 2015 - I was wrong. I had gallstone attack #3 on a Tuesday night. Heath was in Orlando, I was in Tallahassee by myself with the two babies and my mom, and I was scared to death. I called and woke Heath up, and he ended up driving to Tallahassee the next morning, just for moral support. I called the surgeon's office that next morning, and scheduled my surgery to remove the gallbladder for May 13th.
Five days later, a Saturday, gallstone attack #4 hit, and it was by far the worst. It got so bad that Heath took me to the ER, with our six-week-old baby in tow. By the time I was put in a triage room, it was nearly midnight. Around 2 am, my surgeon stopped by and said that he happened to be on call, and that he would go ahead and take out the gallbladder the next day and put an end to this :) YAY!
At around noon on April 26, my gallbladder was no longer an issue, and we were ready to move on :)
August 2015 - Just shy of six months post op (why is that such a magical number for surgical recovery?), something didn't feel right. I called my doctor, told him that something seemed off, and asked for an appointment. He assured me things were fine, and that it takes six months to completely heal. To pacify me, they scheduled a CT to double check. Everything came back clean, and he said it was just things shifting from having the baby and having the gallbladder removed. It would be okay.
May 2016 - While doing some abdominal exercises on the floor, I felt a jolt of pain on my right side. When I put my hand there, I felt something. A mass. It was small, but it was definitely there. I called my doctor and asked for another follow-up. He examined me, said he could feel something, but thought it was most likely scar tissue, or a mass of fatty tissue and scar tissue combined. They ordered another CT to be done, just to double check.
June 2016 - CT scan results came back clean again, but because my surgeon had felt what I was talking about, he suggested an exploratory surgery, to be done whenever, because they weren't really concerned about it being anything other than scar tissue. We scheduled the surgery for when I returned from our summer in Illinois, August 19th.
August 2016 - I spent too much time on Google prior to my surgery, and had also taken up the habit of watching Grey's Anatomy (which I know is completely dramatized and crazy), and basically gave myself a few panic attacks leading up to this surgery. Do yourself a favor and don't Google abdominal masses...you'll find all kinds of scary things out there. I was convinced it was a tumor, possibly a rare pancreatic tumor, and that things were going to be very bad. I also worried that maybe it was a surgical hernia, and that he would just have to fix that. Or possibly just scrape out a bunch of scar tissue.
My surgery was scheduled for 2 pm that Friday, but I ended up getting bumped behind a few emergent cases that had come in. I remember going down into the pre-op area around 6 pm and meeting with the anesthesiologist (who was the same guy from the previous April). The nurse in pre-op attended the church we sporadically attended in Tallahassee after we left FCC. I remember my surgeon coming in and chatting with me, and I remember asking him what his plans were if the scary lump happened to be either a) scar tissue, b) a hernia, or c) a scary tumor. He responded by telling me that a tumor was so far from his scope of possibility, and I remember crying tears of relief. He held my hand and said it would be fine.
The next thing I remember was slowly waking up in post-op and hearing someone in the distance saying something about a spindle cell tumor. She kept saying that the surgery was only supposed to be an hour, and that it ended up being almost three. I remember asking her what time it was, and then in my groggy state, deducing that she was talking about me. I remember panicking and asking her if he found a tumor and what was happening, and then going back to sleep.
Later that night, I was back in a room, and Heath was there. He had taken my phone from me, and was being evasive. I told him I had heard something about a tumor and I wanted to google what it was (see, it's an addiction). My surgeon came by (I feel like it was close to midnight) and explained what he had found. He referred to it as a spindle cell tumor, about the size of an egg, and that he rarely saw this type of tumor. He guessed that by the pattern or shape or behavior of the tissue, that we were dealing with a benign tumor, but that they would obviously send it off to pathology for further investigation. He assured us that he was confident that he had gotten clean margins, and that it was gone. I stayed in the hospital through the weekend, and began the super slow journey of recovery.
***In the meantime, our house had flooded over the summer while we were gone, and we had to drive back to Orlando to stay with his parents. You can read about that whole mess here.
We called the surgeon's office five or six days later to find out about the results of the biopsy, only to find out that my specimen had been sent elsewhere for further testing...ugh. Okay.
Another week went by with no word from anyone. I called again, and the results lady (not sure of her title) started digging around to find out why my pathology report still hadn't been returned. She found out that my sample had been sent to Shands @ UF to a special soft tissue masses pathologist. She also informed me that he was notorious for being slow :)
THREE WEEKS went by, and I was in Illinois visiting at a friend's house, and I actually missed the call from the hospital. My nurse left a message for me explaining that the results indicated a BENIGN mass. I cried, and was finally able to stop panicking.
October 2016 - It was about six weeks post-op, and the kids and I spent a week with my parents and my grandma at her condo in Siesta Key. While we were there, Finley and I were playing in the pool, and after she jumped off my shoulders, she kicked my abdomen, right at my incision site, while swimming away. I remember doubling over in pain, and immediately started panicking about internal sutures being affected. A few days later, I felt a lump there. So, of course I called my doctor. The nurse told me it had barely been six weeks, and to give it ten days to two weeks and see how I felt after that.
Those two weeks went by, and I was still in substantial pain. Obviously I could still move, but any bend in my core (which happens WAY MORE than I ever thought) hurt like crazy. I called them back, and I was called in for an exam.
I told them I was scared and worried and concerned, and they assured me things were fine. But again, they would order a CT scan for good measure.
Surprise, surprise, the CT came back clean :) At this point, it was mid-November. We decided to wait until after Christmas and re-assess.
January 2017 - I went back for my millionth follow-up, and he asked if it was the same, better, or worse. I told him it was the same, and that there was definitely a palpable lump underneath the previous incision. He could feel the lump, and he was also surprised when I winced in pain each time he touched the area. He sat there at the exam table just pouring over my file. He seemed stumped. So, he ordered an MRI.
February 2, 2017 - MRI in Tallahassee. At this point, we had made the fast and hard decision to move back to Saint Cloud. So, this MRI took place two days before our first of several moving trips took place.
February 13, 2017 - My new nurse BFF called and asked if I could talk. I immediately knew that something was going on, because she wanted to make sure I could talk for a few minutes. She told me that the MRI confirmed a mass in my abdomen (duh, I had been saying this for months now), and that my surgeon wanted to do a CT guided needle biopsy. Okay. Perfect. Sign me up, let's do this! We scheduled it for a weekend that we were going back to Tallahassee to continue packing up the house there. She and I were officially on a first name basis at this point :)
February 24, 2017 - I traveled to Tallahassee the night before the biopsy by myself. Heath and the kids were going to join me after the procedure and take me home. I got to the hospital impressively early, got myself checked in, and waited to be admitted. I was taken to a room where a not-so-fabulous nurse had to get my IV started and what not. She flipped out on me because I hadn't removed any of my rings (no one told me to do that) and also because I was a hard stick. She bruised both my hands and my left wrist, I cried, and then she got all weird on me because I was crying. NOT A GOOD START TO THE DAY.
I was taken down to the CT area around 9 am, and sat there alone waiting for this to get started. The radiologist came in, sat down, and started asking me about my surgical history and how I ended up where I was. He was very honest, and informed me that he had only just found out that I had already had a tumor resected from my abdomen less than six months prior. He said that for whatever reason, my entire chart and history didn't make it into his hands until that very morning. He expressed concern for the biopsy procedure, and told me that he felt that it would be doing more harm than good to do the biopsy. He told me that he recommended I move to a tertiary location to be looked at by a specialist. He felt that what we were/are dealing with is a Desmoid tumor. He was so incredibly patient. He went back to the pathologist and double checked my scans and the surgical reports from August, and again confirmed that they both thought we were dealing with this type of tumor.
*A Desmoid tumor is typically a benign but locally aggressive tumor. I've done lots of research on these bad boys, and you can too. Just google it :)
Anyway, this radiologist was so humble and just so great. He suggested that I asked to be referred elsewhere, to a hospital like Shands, MAYO, Moffitt, UAB, or Emory. The sound of Mayo Clinic obviously gave me heart palpitations, but, I felt like this was the right direction to go. He left the room one more time and returned with a business card and gave me his PERSONAL cell phone number. He said to call him if I had any problems, or if I hadn't heard from my surgeon's office by a certain day. We cancelled the biopsy, I returned to my hospital room, packed up, got in my car, and cried a whole lot.
March 1, 2017 - My nurse BFF called me just before the deadline I had set before I reached out to the radiologist. She told me that my surgeon was confused and a bit frustrated that I hadn't had the biopsy. I shared with her everything that had happened that morning, and she said I would be hearing from my surgeon.
*Please know that I love this nurse, I'm grateful for all of her help, and that I thought/think my surgeon is a great guy and a very personable doctor. No harm, no foul. But apparently my crazy abdominal mess requires someone with a more detailed specialization.
March 2, 2017 - Nurse BFF called back and told me that my surgeon spoke to a reconstructive plastic surgeon in Tallahassee who recommended that I be referred to a doctor in Orlando. PERFECT! We live here now!
March 14, 2017 - Heath and I met my new surgeon. He was INCREDIBLE. He spent what felt like an hour talking to us and outlining a plan. He specializes in soft tissue sarcomas, and also believes this is a Desmoid tumor we are dealing with. These tumors are rare, but when they do occur, they tend to be found in women in their thirties who have experienced pregnancy. They are hormonally fed, and can occur entirely sporadically or be a genetic glitch. He explained that he believed the mass that had been removed in August was the same type of tumor, and that because my surgeon was caught off guard by its appearance, that he most likely did not remove every single tentacle of the mass. Like I mentioned before, these tumors are locally aggressive. If his guess is correct, this tumor took less than six weeks to regenerate and more than double in size. According to the MRI, it is roughly four inches in length and about two inches in diameter, in an oval shape. He said that based on the scans, he doesn't think this tumor has adhered to any organs at this point, and that it is only within the abdominal wall and connective tissues/muscles.
He recommended surgery to remove the tumor and all of its surrounding tissue, and that he will replace it with surgical mesh. I asked if we could wait until after my brother's wedding and after Easter, and he said that should be fine. We asked lots of questions, and he was very knowledgeable regarding this type of tumor. He gave me his card and told him to call with any questions I might have.
March 21, 2017 - I called his office, and HE ACTUALLY CALLED ME BACK. We "chatted" for almost twenty minutes about the whole surgery, the recovery, the outcomes, everything. I was floored.
April 19, 2017 - Pre-op admissions and lab work
April 21, 2017 - The big surgery at 7:30 am in Orlando.
If you have made it this far, you deserve a reward. I can offer to mail you a book mark, because you obviously like reading :) Thank you for your prayers and concern.
Monday, October 03, 2016
Mother Knows Best (and dad too)
My parents are very smart people. I mean, not just intellectually smart, but common sense smart. I turn to them for advice almost on the daily.
That being said, the lesson I'm learning now (the hard way, might I add), could have been avoided had I just modeled what my parents taught us while we were growing up.
Every time we left the house for more than a day or two, we had to make sure everything was "cleaned up, picked up, put away" before we left. Like totally spotless. Now, at the time, their rationale for doing these things was a bit morbid, but it worked. They said we needed to leave the house spic and span clean in case something catastoprohic happened while we were away. That way, whoever had to deal with the aftermath of said catastrophe, wouldn't think we were slovenly human beings. And it was just plain courtesy.
Well, in June, we set out to leave our house in Tallahassee to head to Orlando for a few days, and then on to spend seven weeks in Illinois. Due to doctor appointments and a few other obligations, I stayed behind with the kids, planning to join Heath a few days later.
Because I'm a stressed out packer, and because I have two tiny humans who rather enjoy tearing into things, I may or may not have left our house in somewhat of a disarray. (Read - complete and utter chaos...toys everywhere, clean laundry folded on the couches, mail on the kitchen counter, last minute things I decided needed to stay behind kind of everywhere, Finley's most recent art projects, you get the picture.)
Now, normally this wouldn't be that big of a problem. I knew I would come home in August and have suitcases to unpack, PLUS a house to tidy up. But, as my parents always said, in case of a catastrophe...
Our catastrophe started as something that was annoying, but not a major issue. Inconvenient, sure, but catastrophic? Not at all. Our neighbor texted on July 19th (Finley's birthday) to ask if she could park their RV in our driveway while they had some work done at their house. Of course, no problem! By all means...
Well, thank heavens she asked! Our other fabulous neighbor went over to the house with her so they could access an electrical outlet in the garage, and when they opened it up, they found that there was standing water covering the majority of it. Awesome. Turns out our water heater had sprung a leak, and it took down several boxes of books and a counter with it.
Okay. Simple fix. Remove water heater, clean up water, and replace. Heath and our neighbor got it all worked out, and a new water heater was to be scheduled the following week, the 26th.
Fast forward to the afternoon of the 26th. I had taken the kids on a mini tour of the Midwest, making stops in Louisville, southern Indiana, Indy, Champaign, and Springfield. While I was pulling into our next stop in Indy, my neighbor called and asked me to have the plumbing guys come back to the house because he thought there was something wrong after they had installed the new water heater. Oh, there was definitely something wrong. Turns out the common wall between the garage (where the water heater was) and our family room had gotten wet...very very wet, and now we had buckled flooring, wet drywall, and best of all...mold. Rock on.
*Thank heavens for our neighbors. Seriously. The best people on the planet.
Keep in mind that all of this was taking place while neither one of us was in town...I was running around the Midwest, and Heath was in Orlando. Our neighbor became the physical contact for several insurance people, as well as our new mold specialist friend, Chad. We began the slow and grueling process of insurance claims and adjustments and mold mitigation. So many hurdles to jump through. And because of the nature of mold, we couldn't be in the house while all of this mitigation was taking place.
September 1 brought hurricane Hermine which also delayed the progress of our mold mitigation.
Tonight, October 3, is our first official night back in the house. We have no flooring. There is drywall dust everywhere. The walls are not finished being repaired. The contents of the two "containment areas" are now dispersed among the already messy house. Our furniture isn't ruined, but is sealed up in the garage to be treated for mold at a later time (by us) because we maxed out the allotted insurance monies for mold damage. We have suitcases and bags piled up everywhere because we have now been away from our house for 16 weeks. And we have no food in the house because both the refrigerator and upright freezer had to be purged because of the storm outages in September.
But tonight, instead of running around like a complete crazy person, attempting to clean and rearrange, Finley and I made a Halloween paper chain, because that was more important.
So, the moral of this long story is three-fold:
1. Mother knows best;
2. Enjoy the moment, for this too shall pass all too quickly;
3. And for goodness sakes, clean your house before leaving for any period of time beyond 24 hours.
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