Thursday, May 15, 2014

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. 

Tuesday, May 13, 2014

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!!

Monday, May 12, 2014

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.....

Monday, May 5, 2014

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. 

Tuesday, April 29, 2014

And the Saga Continues...

At this point in my story, my dates actually get a little fuzzy.  I know that is shocking, especially when I started this series off by stating that dates remain fixed in my mind - really beyond any reasonable person's ability to remember what happened on any given day.  Truth be told, from the time that I received the diagnosis of "brain tumor" to the point of my surgery, I was numb.  Numb is pretty much the only word for it, but don't get me wrong - I cried and I felt and I worried.  I cried A LOT.  I made decisions for myself, for my husband, for my baby daughter.  I just got to a point when tears didn't do it for me anymore; my practicality won out and I just moved forward.

Thankfully for my recollections and for you, as my reader, my husband is an email pack rat.  He actually saved the following email from 10 years ago, and it documents exactly what we were doing during this week:



From:
Ron Balsdon
To:

CC:

Date:
5/3/2004 11:33:46 PM
Subject:
Balsdon Family News



Greetings one and all –

I apologize for this mass-email and I hope that this message is not deleted by your SPAM filter before you read this. I realize that I have not kept in the best of touch with some of you on this distribution, but I have included everyone in my email address book because this is easiest way to tell everyone this message at the same time.

Our story all started about 3 months ago when my wife, Megan, tripped over a sprinkler head in her mother’s front yard and, swinging her arms like mad, tripped and fell face first onto the front hood of our new car before falling backward and knocking the back of her head on the concrete of her mother’s driveway. She had at the time the requisite bruise on her chin and bump on her head, but luckily, there was nothing broken and nothing bleeding. We picked her up, brushed her off, and went about our business. Keeping a sharp eye out for any symptom of the after-affects of blunt head trauma, Megan watched for symptoms of anything that might be unusual in the ensuing couple of weeks. Besides the bruising on her knees and her chin and because she can be a bit on the paranoid side sometimes, Megan noticed that her vision sometimes became blurred, she sometimes saw spots and sometimes she felt a little dizzy or light-headed. All of these things had seemed to previously occur at some point or the other in the past, but since they would go away after a while, we really didn’t pay them too much attention. Well, because she had started to notice the fuzzy vision in the aftermath of her trip into the front end of our car, Megan began to also note when and where these things occurred when it slowly dawned on her that a lot of weird stuff seemed to be happening quite often. Some days she would see spots, other days she would get dizzy, sometimes, her eyesight would blur after staring at the computer all day. But she also started to notice other weird things, like being slightly off balance sometimes, or the fact that she had a dull headache almost every single day, or she would stumble into a wall while not paying attention. Megan started to get a little concerned.

She began methodically (she did get her degree from UT in pre-med, after all), and went to the eye doctor about 6 weeks ago. He could see nothing wrong, other than her severe nearsightedness (that she must have caught from me), and proceeded to sell Megan a new set of glasses and frames and a full year’s worth of contact lenses for several hundred dollars. Still a little concerned, Megan waited until her 6-month post-pregnancy check-up to bring up the subject with a medical doctor. This visit took place in late March and after telling her regular doctor what was going on, she was referred to an Internist with an appointment scheduled for April 19. After listening to Megan’s story, the Internist (who happened to be less than a year out of Med School) referred Megan to have a CT scan performed the next day – just to make sure that there was nothing wrong. Megan went in at 9 in the morning and it only took until around noon, Tuesday, April 20 for the doctor to call and say that there was something a bit odd on the CT scan, a “mass” if you will, and could Megan be so kind so as to maybe go back again the next day for an MRI? Megan was a little freaked out about the great unknown, cried more than a little that afternoon and night, but otherwise held off a full-blown panic attack/freak-out, and we then went back to the radiologist and had the MRI done on the 21st. After reviewing the resulting films with the Internist, the Radiologist made yet another appointment for Megan. Things were now moving a little fast and furious and thus it was Thursday, 4-22-2004 at exactly 4:22 in the afternoon that we sat in the offices of a Neurosurgeon and were told that Megan is currently suffering from a rather large tumor (3 cm x 5 cm x 9 cm) located on the top of her head and embedded in the squishy protective layer surrounding the brain.

Luckily, this diagnosis took place a week and a half ago, so we have all had a chance to relax a little bit after stressing out just a tad, read up on the issues, breathe deep, get the official second opinion (not to mention finish up Ron’s school semester at the same time) and start coming up with a game plan.

This much we know: 1) from the looks of things on the MRI scan, Megan most likely has a type of tumor that is called Meningioma. 2) It is a very, very slow growing type of tumor. In fact, the doctor told us that Megan’s bump on her head in January had nothing to do with this – she has had this thing for years. 3) For some odd reason, the hormones produced during pregnancy cause this type of tumor to grow more rapidly. And because the tumor is/was growing more rapidly, the brain was unable to adjust to the growth as it had in the past – thus, Megan started seeing lots of different symptoms more frequently. 4) Surgery is the only option for treatment. 5) The location of the tumor will make removal easier because it is on the top of the head and, by definition of what is a Meningioma, it is only sitting on top of the brain – not invading into it. 6) 90% of this type of tumor is benign. 7) Because of its slow growth, there is no emergency or reason to jump into surgery tomorrow. We can take our time in making all of the preparations. On the negative side of things, 1) it is unusual to see this in a otherwise healthy 25-year old, 2) the tumor looks to be butting up against (but not enveloping) the large blood vessel running between the two halves of the brain and 3) it is already excessively large.

And, thus, we now find ourselves waiting for the doctor to get back with us with a set of surgery dates. Most likely, this surgery will be toward the end of next week.

Luckily, we have tried to move on and deal with all of this with a grain of salt and a lot of humor (as I hope is evident in this email). Megan and I both know and feel that there is nothing at all that we can do other than schedule a time and place and have this little “procedure” done to take care of everything. Its not like brain surgery is as difficult as rocket science, now is it?!? In 6-8 weeks, Megan will then be back up on her feet and able to drive around (did I mention that because of possible seizures that she can’t drive anymore?). Anything outside of this scenario is just not something that we care to contemplate as there simply is no other alternative or outcome possible. We have also discovered after telling people of her condition that about every third person has a co-worker’s cousin who has an uncle related to someone who has had brain surgery and survived. There definitely seem to be a lot of survivors out there (including people as young as or younger than Megan) and we certainly look forward to Megan someday being that co-worker’s cousin who has an uncle related to someone who has had brain surgery. In fact, we are already planning the party in the Fall at the Salt Lick (www.saltlickbbq.com) to celebrate the success of her surgery (Where else, right?).

On a happier note, our daughter Audrey is doing great as she approaches her 8-month old mark. She is already heavier than what I could bench press in the 7th grade (or today if I am really honest with myself), has started getting teeth, has not YET started crawling, and has started to become the determined, possessive, self-aware firebrand that will get her arrested someday. Plus, she has beautiful big blue eyes. I am still not sure where they came from, but they are beautiful nonetheless. Please see the attached photo taken less than six hours ago.

In all seriousness, and to wrap up this email for those of you who have read down this far, Megan’s tumor is indeed a big deal. We are concerned for her health and are making the best plans that we can at this time. As we start to head into next week and her as-of-yet-tentative surgery date comes closer, we will, however, take all the help that we can get in the form of your best wishes and support. If you are a praying person, then please also pray for her health and well being. I know Megan has been extremely touched by all of the well-wishes and concern that has so far been expressed on her behalf and through the cosmic ether out there, it will all eventually catch up to her.

Thanks,
Ron

I know I just made a MASSIVE wall of words, and I apologize, but I thought it was really interesting to read the story from my husband's perspective.  I had actually forgotten some of it - like the vision changes and the process that I went through with my eye doctor in addition to my OB/GYN, not to mention the assumed hormonal connection in regards to the rather rapid growth of the tumor.   At this point, I can also tell that I had done my due diligence by having the second opinion given by another neurosurgeon and we were basically waiting for the first doctor to schedule the surgery.

During this time, I wrote a will and completed a medical power of attorney, giving my husband permission to remove me from life support if I could only live in a vegetative state.  I wrote letters to my husband and to my daughter, letters that I hoped they never had to open, letters that feebly tried to convey how much I loved them and how sorry I was that I had to leave.  I also went shopping with my mom and we bought nice pajamas and slippers for my (assumed) extended hospital stay.  I called my dad, who I had not spoken to in almost 10 years, and started to lay the foundation for re-establishing our relationship.  Mostly, I just prepared.  And prayed.  And hoped.  And tried to focus on moving forward.  And became certain, with every day that brought me closer to surgery, which we eventually scheduled for May 13, 2004, that I was not done on this earth. 

Tuesday, April 22, 2014

April 21

Dammit.  I'm a day late (I was physically home for about an hour yesterday) and I already know that I am not going to be able to give this part of the story justice in the....let's see.....15 minutes I have to write, so I think I may have to come back to this one again. 

So, I left off with my internist referring me on to a neurosurgeon.  Not a neurosurgeon - THE neurosurgeon - the best one that Austin, Texas had to offer.  His name: Dr. Marvin Cressman and, at the time that I first met him, he was still in practice at the age of 73 years old.  He was old school, to say the very least - stepping into his office was like stepping 30 years back in time.  The 70's were alive and well in this part of the medical district, albeit with a few modern touches thrown in - most notably the light screens behind his desk which illuminated my MRI scans from the day prior.  Even to my medically untrained eyes, I could see, in pretty perfect definition, the tumor sitting on the top of my brain.  It is a really surreal experience to be able to look at your head from a multitude of angles and realize that there is something unidentifiable inside your skull that, just 3 days prior, you had no idea existed.  Even more surreal is to have a 73 year old physician tell you that, at the age of 25, you need brain surgery to remove a tumor that would grow to lethal dimensions within a year. 

We discussed a variety of options - family and friends had been offering their stories of brain surgery that either they or someone they had known at some point had experienced.  I asked intelligent questions like, "I was told that some types of tumors can be removed through the nasal cavity.  Is that possible here?"  He made it clear that the only choice, both because of the size and because he felt that the tumor had been in my brain for ten years (TEN years....that's ALOT of headaches that were suddenly explained), the only option was a full craniotomy.  I think I did all of the talking in our meeting - I mean, I was the one with the damn brain tumor after all - but, I remember that my husband and my mother, both of whom accompanied me to the appointment - let me take the lead almost exclusively.  At the end, I thanked him for his time and let him know that I needed to seek a second opinion.  He agreed and offered me the name of another physician who partnered with him for his on-call times.  I walked out of his office and back into 2004, MRI scans in hand and the knowledge that I would need to have brain surgery.  At 25.  With a husband and a baby girl and about a million plans ahead of me. 

Sunday, April 20, 2014

April 20

On this day, 10 years ago, my husband and I dropped our then 7 month old daughter off at day care and went to meet my mother at Austin Radiological Association for my first MRI.  I was scared - not of what the MRI would reveal about the mass in my skull - but of the MRI itself.  That seems silly to say at this point (after having repeated MRI's over the past decade), but I was not sure what to expect from the scan or from myself for that matter.  I was asked if I had claustrophobia and I could not answer honestly.  I had never had a reason to have a problem with enclosed spaces, but I had also never been asked to lie completely still, strapped to a narrow gurney in a tube that was disconcertingly coffin shaped.   My boss had plenty of experience with MRI's, having been diagnosed with a tumor on her optic nerve several years prior, and gave me a good idea of what to expect from the machine itself; she told me it would be loud, that the noises would change tone as the machine scanned infinitely tiny slices of my brain and that it would be a very long 45 minutes of moving as little as possible.  What I wasn't sure about was whether or not this would cause me to have some kind of panic attack in the middle of this urgent test. 

When we got to the ARA location, I filled out paperwork again - this time with a little more emphasis on what metals I may or may not have in my body.  I was asked to disclose whether or not I had any tattoos (I did - still do, as a matter of fact) and fillings in my teeth (yes, but just the one).  I hugged my mom, left her sitting in the waiting to make calls to family and walked with my husband to the back, where I changed into a hospital gown.  I, again, stripped off all of my jewelry and my glasses, but this time, I handed it all off to my husband for safekeeping.  I was asked to lie down on the narrow strip of padded plastic while the tech started an IV (because this time, I did not have any choice about the contrast material being injected) and worked on strapping me into position for the MRI.  My head was encased in a plastic cage - I would have found it hard to move, even if I had wanted to.  They warned me to lie as still as possible, asked if I was ready and then pressed the button to move me and my little plastic bed into the MRI machine. 

Now, I won't say that having an MRI is necessarily unpleasant, but for me, it was a little difficult to keep breathing calmly as I was mechanically moved into a metal tube where I could barely see the light of the outside room somewhere in the vicinity of my feet.  Being nearly blind as it is, I found that being divested of my glasses made the world outside my little tube seem overly bright and incredibly fuzzy and disturbingly far away.  I felt isolated and trapped, trying to catch a glimpse of what was going on in the room around me, so I decided to keep my eyes closed and tried to pretend I was taking a nap....strapped down and struggling to keep my breathing under control.  I did as my boss suggested - I listened for the changing tones of the MRI machine which was much louder than I expected.  Those tones were all I could hear and they reverberated through my ears, my head, my entire body.  I changed tactic and decided I would try to assign each tone a different musical genre - there was classical, heavy metal (ha ha), pop.  I managed to distract myself with that and pretending that the vibrations of the machine were a little more like a massage rather than the movements of a giant magnet revolving around me.  It all made me feel just a little bit better, just a little bit more calm.  Just a little bit, but it was enough to get me through that 45 minutes. 

Once I was done, we left and I went on to my office to further distract myself with work.  My doctor called me later in the afternoon (I was seriously expecting a call within hours, but I assumed that MRI's might take longer for the radiologist to review).  I was walking to my car in the parking garage and very calmly listened to her say, "you have a massive tumor pressing on the top of your brain.  It is 9 centimeters by 5 centimeters by 3 centimeters.  Now, we don't know exactly what type of tumor it is, but I am scheduling an appointment with a neurosurgeon for you tomorrow afternoon.  He's the best in Austin.  You need to meet with him to determine the next step in your treatment."  I thanked her and told her that I would wait to hear from her office as to when the appointment would be the following day. 

So, I now knew that I had a brain tumor.  I was starting to feel a little numb - definitely starting to detach from the situation.  At the beginning, that preternatural calm would last for only a short period of time before I would break down and cry.  I knew that the next day would bring more answers and that I could not do anything until I met with the best neurosurgeon that Austin had to offer.  So, I worried a little, I cried a little, I slept a little, I thought a lot.  Mostly I waited to see what the next day would bring.