As Promised....

I did promise the after-story and some pictures, didn't I?  Alright...here you go.  (I would like to point out that many of these photos have never been publicly shared.  I choose to do so now.)  First, to answer the question: what was the tumor, after all?  It was a benign mass made completely from cartilage and was the only tumor of that type my doctor had ever seen in 40+ years of neurosurgery.  It was rare enough to see a massive brain tumor in a 25 year old woman, but was made all that much more so by the composition of the thing.  This was so anomalous, in fact, that the folks at MD Anderson, who confirmed the benign nature of the tumor, were unable to determine, first, where the growth started (either from inside the dura mater or from outside) and, second, whether the growth will return. (I have periodic scans; my MRI from last fall showed zero regrowth at the original site.)

When we first started discussing the plans for recovery following the surgery, my doctor anticipated that I would spend up to a week in the ICU and, potentially, another week on the neuro floor of the hospital.  In total, I spent less than 2 days in the ICU (the first night after surgery, the full 24 hours afterwards and the few hours that second day that it took to determine I no longer required intensive care).  I was released less than a week following my admission to the hospital.  My husband shuttled back and forth between our house, spending time with our baby daughter who was being cared for by his parents, to the hospital to spend time with me.  My mother slept on the couch in my hospital room every night I was there.  She read to me when I was too tired to look at a book and she drove me home when they let me go.

My daughter, 8 months old, visiting me in the hospital.

My doctor had originally planned to shave the front strip of my hair, just back from my natural hairline, but when they began, he made the decision to approach the tumor from a different angle, so he shaved almost a 1/3 of my entire head. 

Top View

 The right side, from the hairline to the mid line of my head, back down to just above my ear was completely buzzed; once I had the bandages removed a week after the surgery, I also had a bad ass, Frankenstein-like scar that ran the length and breadth of that side of my skull. 

Front View

I wasn't allowed to drive for 3 months following the surgery (because of the threat of seizures), so my younger sister, who had just graduated from college, moved in with us to help care for my daughter (and for me) during the week while my husband worked.  She drove us everywhere - including taking me to work, as I returned to my job briefly, following my medical leave of absence.  My husband and I had finally agreed that it was time for me to make the most of the time when our daughter was little.  As soon as I safely could, we decided that I would stay at home with our daughter and any future children we might have.  (We now have 2 others.)

My pseudo-mullet style, once it had grown out a bit. 

I invested in hats and scarves to cover my crazy hair style and, once it was grown out enough, I cut it super short, dyed it a fun strawberry blond and started living my new life. 

I followed up with my neurosurgeon several times over the course of the first year following surgery.  After 6 six weeks, we were able to determine that the tumor, despite how long it had put pressure on my brain, had done minimal lasting damage.  I was given a neurologically clean bill of health and told to have MRI scans every 2 to 5 years.  Right after our second daughter was born, I started experiencing some of the same symptoms that led us to first discover the tumor and so, I revisited my doctor, getting in to see him about a month before his retirement.  Again, from a CT scan that he ordered, we were able to tell that the tumor was not regrowing and, at that time, he extended my follow up time to 7 to 10 years.  (I next had a scan at 9 years...I like to live on the edge now.) 

Lasting effects of the surgery include....well, not much.  I have clips in my skull, underneath my scalp, which, if I hit them for some reason (and I have done it, trust me) hurt like a b***h.  I do have a scar which was rather artfully hidden in my hairline by my surgeon.  That scar is also a demarcation for how my hair grows differently.  I have always had stick straight hair, but now, just in front of that scar and just on the front of my head, my hair grows in curly.  You can see it best when my hair is wet or, as is the case most days now with my new "career", sweaty.  Whenever I see those curls, that old nursery rhyme pops up in my head - "there was a little girl with a little curl upon her forehead; when she was good, she was very, very good, but when she was bad, she was horrid."   (I am not typically horrid, but still....) 

I started staying at home with our oldest daughter and continued to do so with our second daughter and our son, now three years old.  I went back to school to fulfill a lifelong dream of becoming a chef, started my own cake making business, I lost weight, got into the best shape of my life and am now getting paid to help people get into the best shape of theirs.  I have been so very blessed and, every day since that surgery, I have tried to live with the idea that this life of mine is a gift which should not be squandered.  Whatever fears I have faced since then have been met more head on than I was ever able to do before - I typically approach anything that makes me scared or nervous with the thought of, "at least its not brain surgery".  Gallows humor to be sure, but humor and a good attitude is what got me through this in the first place.  This is, of course, not to forget my amazing support system of family and friends across the world, plus a higher presence that was definitely watching over me.  I can't say that I want to do it again....ever....but, I gained so much from an experience that could have been so much worse. 

Thanks for reading.