Leading Up to My Diagnosis

In November 2005, I was experiencing some abdominal pain.  It wasn't too concerning, but I visited the Student Health Center at Mizzou.  Without running any tests and just listening to my symptoms, the doctor said I probably had IBS (irritable bowel syndrome).   I was confused because I wasn't experiencing diarrhea, as I associated with IBS, but she said it can just cause cramping and pain in the abdomen.  I went on my way and things seemed to improve throughout the month.

I remember at Christmas that year, I wasn't feeling too well.  I wasn't necessarily sick, but my body just didn't feel right.  I was slightly nauseous but not enough that I couldn't keep food down, and I ate Christmas dinner just fine.  I just didn't eat a lot and afterwards, I didn't feel too great.
I had a headache but it wasn't even strong enough that I took Tylenol.
I remember thinking I was showing signs of the flu.  But it never came.
I just wasn't my normal loud and obnoxious self.
None of this seemed too alarming to me.

Throughout December, I was also starting to lose energy.  As the month passed, I grew weak and fatigued.  Very normal activities would cause me to be out of breath.  I often found myself incredibly winded after making my bed.  I'd have to sit down and catch me breath.

On Friday, January 6, 2006, back in Columbia, Missouri at my duplex (where I was attending Mizzou), I was putting clothes from my washing machine into my dryer.  I had to take a break because I felt like I was going to pass out.  My roommate and best friend from high school, Jessie, finally convinced me to go to the Student Health Center.  I, and others who knew my symptoms, were convinced I had mono.  It was running rampant around campus so it was highly possible.  And it made sense.  It was the only thing we could think of that made you feel like crap and made you so weak and fatigued for weeks on end while also giving you the sore throat I was experiencing.

I headed to Mizzou's Student Health Center and because it was winter break, I was seen pretty quickly.  I told the doctor everything that had been going on and she agreed that it sounded exactly like mono.  She informed me it was a simple blood test and they'd call me with the results when they were in.  They drew some blood and sent me on my way home.

Right as I was walking in the door to my duplex, I received a call from my doctor.  She told me that my blood counts, specifically my hemoglobin, was dangerously low.  She commented that she didn't know how I wasn't passing out from all the activity I was doing with my hemoglobin at 5 (the norm is 13).  {For those that do not know, your hemoglobin carries the oxygen.}  She then said that I needed to go straight to University Hospital because I was being admitted.  She informed me that I would probably need a blood transfusion and then we'd need to figure out where or why I was losing blood.

I was shocked.  I began tearing up.  I had never, ever been in the hospital. Not even the ER.  Honestly, the last time I was in a hospital (not a regular doctor or Urgent Care) was when I was born!  I'd never broken a bone or had a severe illness.  The worst thing to ever happen to me was the flu every few winters.  I was a healthy, very active athlete.  How could this be happening??  Until this day, I had been a very, very healthy individual.  What had changed?  I was so scared with so many questions running through my brain.

Thank goodness Jessie was home.  She drove me to the hospital and I called my mother on the way.  She immediately hopped in the car and headed from St. Louis to Columbia.  I don't think anyone has ever driven those two hours any quicker than she had.

We arrived at the hospital, I checked in, and was taken up to a hospital room.  They immediately began running some tests and I honestly don't even remember what all it was.  I just remember how terrified I was.  And confused.  I felt like crap, but definitely not crappy enough to now be in a hospital gown, lying in a hospital bed.  My mother finally arrived and a while later Jessie left (she had called into to work and told them she'd be late.  I cannot thank her enough for how amazing of a best friend she was (and still is), especially because hospitals and all bodily type things and needles really freak her out.)

The nurse then informed me I would be getting a blood transfusion to replenish my body of the blood it lost.  She began attempting to insert an IV into my hand.  At this point in my life, I did not like needles and this was very uncomfortable for me.  She had a difficult time, moving the needle all over under my skin, hoping to get the flashback of blood to let her know it was inserted correctly.  I'm not too sure what happened because I was not looking at my hand, but I suddenly hear the nurse saying "Oh my gosh, it's going to explode!" in a frantic voice.  I look down and see that the back of my hand had ballooned up and (because I'm an idiot), I clearly thought she meant my hand was going to explode.  Thankfully, that was not the case, it was only the vein in which she placed the IV, but it was still painful and not a pretty sight for the next two weeks.

Thankfully, an IV tech came in and placed a new IV into my elbow pit (clearly I'm not knowledgeable on proper terminology.)  Once the IV was in, they began my first blood transfusion.  It took about four hours for the first bag and immediately after the blood transfusion, they took some blood and tested it.  It showed my hemoblogin had risen to somewhere around 8.
A few hours after the blood transfusion, they took my blood again to test my levels and see if it was holding steady.  My hemoglobin had begun to drop again.  So we knew I was losing blood somewhere.  The weird thing was, I was not vomiting up blood, nor did they detect any in my urine or stool samples.

A while later, a nurse came in and talked to us (us now being my mother, brother (who also lives in Columbia), and I).  She began talking about the probable causes for blood loss:  tear in my esophagus, a bleeding ulcer, or blood cells splitting.  I didn't think twice about this because I didn't know what it meant.  That is, until I heard my mom talking quietly to my aunt mentioning this, and crying.  I could sense something was wrong.  Eventually my brother convinced my mother to tell me.  Apparently "blood cells splitting" is a strong indication of Leukemia.  I asked the nurse and she confirmed that's what she meant and said that Leukemia is actually common in women in their early 20's.  I was terrified.  Cancer?  There was no way.  That couldn't be me they were talking about.  I've always been so healthy!  She informed me that they were going to be running a test to check for this and I should know within a few hours what the next steps were.  I was terrified.  I laid there for the next few hours fearing I had cancer; a thought that, up until this point, had never, ever crossed my mind.

Because I was still losing blood, I had to get another blood transfusion.  So they hooked me up and began running another bag through me.

Somewhere in this time, another blood test was run and it confirmed my blood cells were not splitting, and therefore I did not have Leukemia.  I was so happy.  We were all so relieved to know I didn't have cancer.  Huge sighs of relief and tears of joy were shared.   Little did we know, Leukemia probably would have been the much better option.  Who would have thought that I should have hoped it would be Leukemia?; That the end outcome was going to be much worse than Leukemia.

I was then (wrongly) discharged from the hospital.  After my first blood transfusion, I was told I could not go home if my levels were not holding steady and they were not at least at 10.  I was at 8.9 and they wouldn't send me home.  Then after my second blood transfusion, they checked my levels.  And then again in a few hours.  They had dropped and I was at 8.7  And they discharged me.  They discharged me when my levels were still dropping.  They discharged me at a lower hemoglobin rate, 8.7, than half a day before when they wouldn't discharge me with the 8.9.   We know it's simply because they were packed.  They had people on beds in the hallway waiting for rooms.  They simply got rid of me to make more space.  We were mad, but at the same time, I was happy to be back home in my own bed, in real clothes, with no machines beeping 24 hours a day, and IVs stuck in my arm.

I was sent home after 48 hours in the hospital with orders to go to the Student Health Center on Monday (it was now Saturday evening) and get my blood drawn to see how my blood levels were.  I was also scheduled for an endoscopy there in Columbia to check for a bleeding ulcer or tear in my esophagus about two weeks later.
I was also told that I was anemic so I needed to consume things with a lot of iron (recommended more red meat) and I was also prescribed iron supplements.


My mother stayed with me through the weekend and that following Monday, I returned to the Student Health Center to get my blood checked.  Good news!  My blood levels had risen from my hospital stay.  It meant that I wasn't losing blood and that my body was now producing more to replenish my lost supply.
Mom took me shopping and made sure I was stocked on healthy red meats.  Then she headed back home to St. Louis and would return for my upper endoscopy.


Fast forward two weeks and my Mom arrives and we head to University Hospital for my endoscopy.  I had never had one done before so I was a little nervous.  I didn't need to do anything on my part.  Just don't eat after midnight the night before, show up, remove my belly button ring, and answer a lot of questions.
Next thing I knew, I was being told to count backwards from 10.  I made it to 9 and that's all I remember.
I then woke up in recovery and my mother was there.  I asked her about the endoscopy and she said they did figure out where I was losing blood.  She told me that I had "bleeding mass" in my stomach, about the size of a golfball.  It was a large mass (they weren't yet calling it a tumor) located up near the opening of my esophagus and the bottom of it was ulcerated and bleeding.
Unfortunately, they were not able to biopsy the mass.  They were afraid if they cut into it, it might bleed too much.  They said it would be best to schedule a surgery and just get it removed.

Because of an amazing nurse, we did not get the surgery scheduled in Columbia.  After the doctor told my mother what he had found and that I would need surgery, a nurse approached her.  She told my mother that she hadn't seen anything like this, nor had that doctor, and she needed to take me home.  She told my mom I needed experts and that since we're from St. Louis, she should take me home to be seen by a doctor at Barnes-Jewish Hospital/Washington University, one of the top hospitals in the nation (ranked within top 10 for gastroenterology and cancer.)

By this time, classes had started again.  I took time off at the end of January to head home to St. Louis and have another endoscopy done by the doctor who did my father's surgery when he had ulcers.  Unfortunately, he was also not able to biopsy the mass.  After the endoscopy, he was 100% honest with my family and told them that this was far beyond his area of expertise, but he highly recommended Dr. Battafarano at Barnes Jewish Hospital.
He made a referral for us and we scheduled another endoscopy with him.  At this point, my tumor was no longer bleeding so they were able to biopsy it and they told us it was benign.  Thank goodness, right?  Not cancerous!
Dr. Battafarano then set us up with an amazing doctor, Dr. Linehan, to schedule surgery and get the mass removed.  My original surgery was not scheduled until April but thankfully, he called at the beginning of February to say he had an opening on February 14, 2006.  We jumped at the opportunity.  The sooner we could get it out, the better.