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. 

May 13: Brain Surgery Time

Ten years is a really long time.  Ten years ago today, I had brain surgery.  Ten years ago today, a man cut into my skull and removed a tumor that threatened my life.  Ten years ago today, I lost consciousness with the hope that I would not just wake up the same person, but that I would wake up at all.  Ten years ago today, I got the worst and most expensive haircut of my life.  Ten years ago today, my life changed. 

After the relief of the day prior, in determining that I would not need glue injected into my vessels to cut off the flow of blood to the tumor, I found that I was truly at peace with the brain surgery scheduled for 9 am on May 13, 2004.  Again, this was a day during which I was conscious part-time, so I only have brief flashes of memories which have since been supplemented by the memories of my family and friends.  I remember sitting in another pre-op area, immediately before the surgery, with my husband and my mom.  I remember a nurse coming into our curtained area and giving me a medication that was supposed to relax me; I remember being so relaxed, in fact, that as I was wheeled away from two of the most important people in my life who were probably more scared than they have ever been, I said goodbye with a flip of the hand and a glib, "don't worry.  It will all be OK."  The next thing I knew, I was being asked to shift onto the operating table in a very, very bright room.  Then, I was counting backwards and....nothing. 

I woke up as I was being lifted from the gurney onto my bed in the ICU, apparently a little less than 3 hours later.  I pawed at the oxygen mask on my face, confused and extremely disoriented.  (If you have ever had surgery, you know how disconcerting that feeling is.)  I was hooked up to multiple monitors, I had a central line in my chest, I had an arterial line in my wrist and my entire head was swathed in a thick turban of gauze.  As I started to more fully gain awareness, I was reassured by what seemed like a dozen people that the surgery had gone very well.

That first day, I mostly floated in and out of consciousness, answering questions from the doctors and nurses who came in every hour to check on me and my neurological status.  I vaguely recall my husband, my mom, my brother, my sister and my (then) future sister-in-law coming in and out of the room for what seemed like extremely brief snatches of time.

With the passing hours, I became more lucid and had almost jubilant conversations with my nurses.  This euphoria came over me as the anesthesia faded - I mean, I didn't feel invincible or anything, but I felt blessed.  I felt my faith more strongly in the course of those first nights than I have ever felt it before.  I knew, beyond any certainty in my life, that I was not done on this earth.  The excitement that those feelings brought ebbed and flowed with my exhaustion.  I slept a lot - or tried to, as it was very difficult to find a comfortable position with all of my wires, my new "hat" and the almost constant checks from the medical staff.  For some reason, I did not have my glasses, so even trying to watch TV was kind of a pain, though I absolutely insisted on watching that week's episode of my favorite show, ER, fuzzy or not. 

There was very little pain associated with the surgery - I was dosed from the beginning with narcotics for pain, anti-inflammatory and anti-seizure medications, plus high levels of antibiotics.  The worst part of the whole ordeal quickly became the medications, which were given via the pic line in my chest.  There was one that made me itchy for like five minutes following the administration and another that I could feel as a scent, as weird as that sounds, as it entered my blood stream.  (I can still recall that smell that wasn't really a smell.)  It was, at worst, uncomfortable - medications that enter your circulatory system within seconds of being pushed....it is a very strange sensation.  

So.  That is what I remember from 10 years ago today.  I was told, later, of course, that I had a rather large cheering section in the waiting room, who were a little over-exuberant when my surgeon came out to give them the news that the surgery had gone well.  If I recall correctly, they were shushed by a couple of nuns(?) nurses(?) nuns who were nurses(?).  As the days went on, we all started to get more information about the nature of my tumor, the overall recovery period that I was facing and the idea that the whole experience would soon be, hopefully, just another memory. 

For tomorrow: pictures!  What the tumor actually was!  What happened next!  Stay tuned!!

May 12

Here begins your big ol' wall of words....on this day, 10 years ago, I was admitted into a hospital in central Austin to begin the process of removing a large brain tumor from my cranium, which my doctor estimated, had been slowly growing over the course of the previous decade.  On this particular morning, I was scheduled for an "arterial occlusion" with a neuroradiologist, in the hopes of blocking blood flow to the tumor before those vessels were cut the following day to remove it.

I want to say that I was terrified, or beside myself with nerves, but as I am sitting here typing and trying to remember this day, 10 years ago, I am just getting flashes of memories with very little terror involved.  I know that I must have kissed my baby goodbye that morning, especially considering that it would be the last time I would see her for several days at the very least; I know that my husband and I must have talked about something in the time it took to drive from our home to the hospital; I know we must have checked in super early and filed paperwork with the hospital administration (I do actually remember sitting in the waiting room), but beyond that, the preparations to get me to this moment, 10 years ago, are pretty vague.

Fast forwarding just a little - when I did get checked in, gowned up and placed into the pre-op room, a nurse came in to start an IV, through which they would, as she explained, administer fluids while I was under anesthesia.  I told her that I was not supposed to be under general anesthesia, only twilight sleep so that I could be awake during the procedure.  She calmly told me that the arteriogram that I was about to undergo was typically performed under general anesthesia and I calmly told her that I had discussed all of this with both my neurosurgeon and the neuroradiologist.  She politely told me I was mistaken, but that she would check with the doctor, who happened to come into the room at that point in the conversation.  He backed me up, told her to switch the IV's and suddenly, we were ready to go.

I mentioned in the last post that the side effects (stroke, embolism, death) of this occlusion procedure scared me more than the idea of the brain surgery for some reason, though the risks were about the same.  None of the doctors was really sure what they would find once they started this whole process, so they prepared me and my family for the worst.  I remember lying on the table in the radiology suite, feeling lucid but loopy, trying not to flinch as a male nurse located my femoral artery near my hip and began to snake a catheter up my body and ultimately into my brain.  (That part didn't hurt.)  I watched as the radiologist injected a dye into the catheter, once they found the correct placement, and I watched the dye spread through the blood vessels in my brain, curving around, but not connecting to the tumor.  I remember the relief that I felt when the doctor said, "I don't think we really have anything to take care of in here.  There doesn't look to be much blood flow to the tumor itself.  I think we can skip the occlusion."  He wished me luck on my surgery the following day, said goodbye and left me with the nurse, who removed the catheter carefully and then held extreme pressure on my hip so that I would not bleed out from this major artery.  (This part hurt - I think I was bruised for weeks afterwards.)

So, instead of going to the ICU immediately following the arterial occlusion, as was the original plan, I was admitted to the neuro ward, where I had the pleasure of lying flat on my back for 6 hours before I was even allowed to sit up, let alone get up and walk.  My husband spoon fed me dinner - I am pretty sure it was the hospital's version of enchiladas - and I tried to watch TV at a weird angle.  I'm sure I napped and I know I repeatedly thanked God that the doctor had not been forced to inject glue into my brain.  I knew the next day would bring a different set of challenges, but I do remember feeling very much at peace, especially now that the whole process had begun.  I knew that I didn't have a choice about having the tumor removed and I knew that I was in excellent hands.  I still had my wits about me - hence my ability to advocate for myself as a mistake, however small, was in the process of being made - and I had a very strong feeling of faith, love and support about me.  I wasn't sure how, but I knew everything was going to be OK. 

Tomorrow: Ever been curious about what it feels like to have brain surgery?  It's weird, but not as bad as you think.....stay tuned.....

Waiting Until May 13

When last I posted, and ten years ago at this time, my little family was waiting for my surgery date.  At this point in my story, we had definitively scheduled the surgery for May 13, though I was to be admitted to the hospital a day earlier on May 12.  The type of tumor that the neurosurgeon assumed that I had was, as my husband stated in his decade old email, a meningioma.  Typically, those tumors are benign and my MRI certainly supported that supposition because the tumor was not, in fact, invading my brain tissue....just the space my brain was supposed to occupy.  Despite the appearance of the benign nature of my tumor, my doctor was fairly concerned about the size and the potential for massive blood loss once he began the process of removing this thing that had been taking up a large amount of real estate in my skull.  He sent me to a neuroradiologist - a radiologist who specializes in the brain, obviously.  The plan was to admit me into the hospital a day early so that the neuroradiologist could snake a catheter up my femoral artery, through my carotid and into my brain to occlude any major blood vessels essentially "feeding" the tumor.  It was explained to me as a very similar process to angioplasty - except in this case, they were blocking blood flow with a glue-like substance rather than cleaning out blood vessels.  It was a scary prospect, particularly when the twin risks of stroke and embolism were explained to me.  I think I was more afraid of this procedure than the process that my neurosurgeon would perform the next day - actually drilling into my skull and removing foreign matter from my brain.  I was to be awake, under twilight sedation, the entire time...you know, so they could make sure I didn't stroke out or OD on anesthesia the following day.  Fun stuff. 

So, these last few days were about getting my affairs fully in order.  There was a lot of "hurry up and wait".  We would have little flurries of activity: first, it was as people donated blood on my behalf so that I could be assured of having plenty should I need a transfusion.  (That, by the way, was one of the most amazing things that was done for me.  I kept the certificates from the blood bank.)  Then, it became pre-admission paperwork at the hospital, more blood draws for me, writing down schedules for my daughter, making sure everything was in place for me to (potentially) spend more than a week in the ICU and then on the neuro ward of the hospital.  I prepared meals, I washed clothes, I cleaned house.  I mentally prepared myself to be gone for at least two weeks. 

***May 12 is the next big date for me and May 13 is the actual anniversary date of my surgery.  Several people have approached me to let me know how they have enjoyed reading my account of this really incredible experience.  I want to thank everyone who has read one or all of my posts and I especially want to thank those of you who have spoken to me directly about it.  I am finding that writing about this has brought back memories and feelings that I had forgotten, so I have enjoyed it (if enjoyed is the correct word for writing about a life threatening and ultimately life altering experience).  I am truly humbled by your support and your friendships; I am so pleased to be writing this account a decade later, happier and healthier than I have ever been.