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. 

Saturday, April 19, 2014

April 19

Not a very original post title, but April 19 is where I left off in my story and it is the first of the three consecutive days that completely altered my life ten years ago.  Just to recap - I had been having some rather strange symptoms after a minor-ish head trauma and my new internist recommended having a CT scan.  I scheduled said scan for the morning of April 19, 2004, running in to Austin Radiological Association right before work.  I had never had cause to have a scan of any kind before and so I was a little nervous about it, especially after having to strip off all of my jewelry, including my wedding rings.  I laid on the little gurney and tried to keep as still as possible while my head was scanned in the enormous, donut shaped machine.  The scan was over in minutes, but the tech asked me to remain where I was while they started an IV.  My doctor had not mentioned any kind of IV being necessary for this (especially because we didn't expect the scan to show anything significant), plus I was still breastfeeding my daughter once a day, so I refused the contrast material that they intended to inject into my bloodstream.  They verified that my doctor's orders had not included the CT with contrast and let me get up, get my jewelry and head on into work. 


For the next couple of hours, it was a completely normal workday.  At the time, I worked in the underwriting department of a medical malpractice insurance company.  I was an assistant to an underwriter, which meant that I worked in a small, open cubicle next to my own assistant and in a room of about 30 other people.  I fielded phone calls, completed paperwork - all things that I did every day in a job that I truly enjoyed.  I honestly wasn't alarmed when, after speaking to doctors all morning, my own doctor called me about three hours after I finished my CT scan.  I vaguely remember the very brief pleasantries and my slight confusion as to why she was calling me back so quickly, not understanding that the phone call was more than an enthusiastic new doctor's due diligence.  I remember her saying to me, "the CT showed something.  We are not entirely sure what it is, but we can tell that it is a mass, approximately 9 centimeters by 5 centimeters.  It is large and you need to go have an MRI done immediately.  I can schedule it for you for this afternoon."  I know that I told her that I could not possibly have the MRI done that day - I had a baby to pick up from daycare after all.  I told her that we could schedule it for the following morning and she agreed, citing the urgent yet non-emergent need to identify whatever was hiding in my brain.


After I said a calm and polite goodbye to my doctor, I told my assistant that I needed to make a few personal calls and that I would be in one of our conference rooms for a little while.  I happened to run into my boss on the way, who stopped me to ask if I had heard anything from my doctor.  I told her what I knew at that point and started to get slightly panicky.  She told me to take whatever time I needed to call my family; in fact, she told me to go home if I needed.  I started trying to call my husband, who was not at his desk.  I left a message.  I called my mom at her office, and left a message because she was out to lunch.  I sat and stared at the phone, feeling like I might have a full on freak out if I did not talk to somebody immediately.  I called my husband's office building and told the security guard that I needed them to find him, page him, whatever - just to get him on the phone because it was an emergency.  I called my brother, who worked for the same company at the time, told him that I needed him to find my husband ASAP and probably scared the hell out of him in the process.  Then, I called my mom on her cell phone, catching her in the middle of a lunch date with old friends.  I remember saying to her, "uh, I need to tell you something, but do you want me to call you back?"  I am pretty sure she heard the extreme edge in my voice and said with all of her motherly authority, "no, I do not.  I want you to tell me what is going on right now."  So, I did.   And started crying.  She started crying.  Then, suddenly, my husband was on the other line and I was full out weeping in a conference room in the middle of my office. 


I didn't go home early that day.  I finished the work that I had to do, mostly because I was not sure I could stop crying without the distraction of my job and entirely sure that I could not look into my little daughter's beautiful face without imagining what this "mass" could mean for me, for her father, for her.  We knew we would find out more the next day when I would have my first MRI and when we would start to get a more information on the mysterious mass in my brain. 

Wednesday, April 16, 2014

A Decade in the Making...

Anyone who knows me personally knows that anniversaries and milestone events mean a great deal to me.  I remember dates, times, events...what have you...like a boss (are people still saying that?).  I feel the intrinsic need to acknowledge those milestone dates in some way...sometimes it will just be by mentioning it in casual conversation and sometimes, like today and going forward, it will be by writing *repeatedly* about it.  I will give you my story (complete with actual pictures!) a little bit at a time, but let me start off this series by saying that this week marks the very beginning of a journey that began ten years ago. 

So, a bit of background: ten years ago, I had a brand new baby girl and I had returned to work under duress from my wonderfully feministic husband.  (I love you, babe; he remembers how hard we used to fight about the idea of me staying at home with our daughter.)  I was breastfeeding and minimally pumping; by this time, ten years ago, I had completely depleted my milk supply, so our daughter was primarily on formula.  I was not happy.  I was also having some, in my opinion at the time, relatively minor health problems.  I got dizzy while putting our baby in her crib, I stumbled with increasing frequency and I had problems standing up straight without losing my balance.  Weird stuff.  (I'm sure it was strange for my co-workers, too, who on more than one occasion witnessed me lurching in the halls or elevators....stone cold sober.) 

Anyway...some months prior (just kidding: I do know the exact date - January 18, 2004), my husband, baby and I were at my mom's house to celebrate my upcoming 25th birthday.  I was still pumping then and when we left for the evening, I realized that I left my breast pump in my mom's house.  We turned the car around and I sprinted inside to retrieve it.  I ran back to the car and, in the dark, tripped over a sprinkler head in my mom's front yard.  I fell headfirst into the front of my car, bounced off and landed on the cement, flat on my back.  I blacked out for maybe a second before I came to, painfully, with bruises on my knees, chin.... not to mention my ego. 

Fast forward to April 2004.  I was still in pain, ostensibly from that fall in January.  My knees were still badly bruised and I was doing all of this weird stumbling stuff.  First, I talked to my OB/GYN, who referred me to an orthopedist for my knee and to an internist for....well, the rest.  I went to the internist first - a younger doctor who took the time to really listen to what I had to say.  She recommended a CT scan - just to rule out the possibility that my issues were related to the head-on collision with my car a few months prior.  I don't think she really believed that the scan would show anything at all; it was really just part of the process of checking possible causes off of her list.  I had that scan on April 19, 2004 and, not to be cliche or anything, found my life changed in the course of three hours. 

To be continued....