“My Voice” by Danielle Nealis

Danielle Nealis - 'Survivor'

I never realized that I would have a story.  It kind of came out of nowhere.  About a year after my second daughter was born, I had gotten a hernia that needed repairing.  During that repair, the surgeon found a tumor, which was biopsied and sent to Atlanta for diagnosis, since no one at my hospital had seen it before.  The surgeon said not to worry, and I put it out of my head.

And so the story begins….when I went to have my stitches removed, I was told that the biopsy came back and was indeed cancer, Desmoid Tumor, or aggressive fibrosarcoma, to be exact.  My jaw hit the floor, my world was spinning.  I had never heard of this, nor had anyone else.  I was immediately scheduled to remove the rest of the tumor, which was located in my abdominal wall.

I came to find out that intra-abdominal Desmoid’s are extremely rare.  Of course, I have to be one in a million!

I ended up having to have 2 more surgeries to remove part of my abdominal wall and replace it with mesh.  The mesh did not work out well, and it was all downhill from there.  I went from doctor to doctor trying to find a way to not be in constant pain, all the while wondering when, not if, this tumor would return.  At that point, there was a 70% recurrence rate.  Not too promising.

I found a doctor in NYC, I live right outside, who said he could fix me.  I was thrilled.  He wanted to wait until there was a reason to go back in though, so I had a CT scan, which showed a possible recurrence in my pelvic wall.  I found this out not because the doctor called me, but because I got a copy of the report from the hospital for my own records.  I am vigilant about being armed with information.  I take the word of no one.  When I confronted the doctor, he said not to worry about it.  Yeah, right.

I then, by kismet, happened to meet the doctor who would come to change my world.  He, unfortunately, was located in Houston, Texas, but you gotta do what you gotta do!  I made the appointment for April 2009 (with much trepidation).  I had to leave my 7 and 4 year old home with my family while my husband and I saw the doctor.  It was confirmed that it was indeed a Desmoid, and I was scheduled for surgery 2 days after my school year ended.  I could not desert the students like that.

My mom was my rock during this time.  I did not want anyone to come to Houston with me.  I wanted my girls to have as much of a normal life as they could with all the family around them, but my mom insisted on coming with me.  My husband came for the surgery, but I wanted him to get right back home to care for our girls.

I had an 8 ½ hour surgery on July 6, 2009.  They removed the tumor (my third in 3 years), and then they had an internationally renowned plastic surgeon reconstruct my abdominal wall.  I was cut from hip to hip, and it was not an easy surgery.  I look back now and don’t even know how I got through it.  Between the meds and depression, I just wanted to go home to my kids.  That is all I wanted.  I had to stay in Houston for 31 nights, and each day was torture to me (no offense , mom).  I had my aunts come visit me for a week, and that helped lighten everyone’s mood, but the recovery was not easy.  There was a lot of tears and yelling.  31 nights seemed like an eternity.

Then I realized that there had to be a reason for this happening.  My body needed the rest.  It occurred to me that I was one of the “survivors” that people talk about.  People say, “Oh, you are so strong to have gone through this.”  I don’t believe that to be true.  I did what I had to do.  Was I happy about it or feeling strong, no way, but I had to do it.  A survivor comes to realize that they are mortal and everything they have can be gone in an instant.  I had things to lose, precious things, and I was not going to let that happen.  I had to fight and fight some more, till I thought I was done.  Then I had to put more fight into it, because I was not done yet.  There is no stopping a survivor.  A survivor leaves no stone unturned.  A survivor has to have an inner desire to want to be here more than anything else.  A survivor has to have a voice that will last long after they are gone.  I hope that I am leaving a voice.

I am four months post operative, and due for a CT scan.   I have to make arrangements to get back to Houston and have that done.  I am in constant pain still, but my window of healing has not yet closed, so I am really trying to be positive and stick it out.  Some days, I just don’t want to get out of bed.  My body aches from head to toe, and I am just so tired.  But, alas, I have much to do, and a survivor does not sit around waiting for things to get done, a survivor does it.

I would like to thank all the friends I have made through the Desmoid Tumor Research Foundation (DTRF.org).  They sent cards, called me, and made sure I was up and around.  It is really nice to know that you are not alone, and that there are people going through the same thing you are.  It is an unbelievable gesture of kindness.

Thank you for listening to my story.

This entry was posted on Tuesday, November 24th, 2009 at 10:02 pm and is filed under written word and tagged with Danielle Nealis, desmoid tumor, fibrosarcoma.