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.