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!
