Still Waiting

Met with Dr. Shapiro yesterday for follow up.  He took out my staples.  Told me it wouldn't hurt - and he lied.  Has he ever had a bunch of stitches or staples taken out of his head?!  Yesterday's stitches removal hurt almost as bad as the staples!!  My head is so sensitive!

He took another CT scan yesterday to see what was going on.  Thought I would hear back from his office today, but I haven't yet.  Of course, we got the CT on CD (like that one?!) and we looked at it yesterday.  From our non-professional view, everything looks pretty good.  My brain looks like it has totally expanded back into place.  Amazing!  Now, if I can just figure out why the heartbeat and windstorm in my ear is still raging....

He's thinking that I might have to delay the start of proton treatment and was going to consult with Dr. Johnstone down at MPRI.  I will be bummed if I have to wait even longer.  Ugh.

Good news is that my appetite seems to be returning and the numbness on my left side seems to be subsiding.  But like the weather in Indiana, just wait and it will change...(can you tell these last 3 months have made me a little cynical?)

I took an awesome 2 1/2 hour nap today.  But I did manage to get out in my garden for about a half hour to pull some weeds!  Making progress.

Let's hope I hear back from Dr. Shapiro's office tomorrow!

Quick update

Finally starting to feel better after the second surgery.  I managed to clean out my work email inbox and do a little work for a couple of hours today.  It was nice, but it did wipe me out!  

I continue to be extremely tired, and my appetite is awful.  I feel like I've eaten a 5 course meal all the time.  Which makes it difficult to even shove anything down my throat.  Luckily, yesterday I could actually eat quite a lot in comparison to the past week.  Maybe that was my mom's great Easter cooking!  

I'm also feeling numbness and pain in my left arm and left heel.  It's strange, but probably just part of the healing.  It's something I'll ask Dr. Shaprio when I see him on Wednesday.  I'm getting my stitches out then!

Public Service Announcement

The hole in the middle of my skull is the Burr Hole they made to drain the hematoma.  The string coming from it is part of the drain that they kept in for about 24 hours to make sure they got out all the fluid.

My hematoma was the exact same kind as the one Natasha Richardson had: an epidural hematoma.  Only mine just had fluid and presumably hers had blood.  It develops in between the dura (the protective layer surrounding the brain) and the skull.  They think mine developed just because my brain had so much space to fill and didn't fill the space as quickly as it needed to, and so fluid ended up building up.   And I'm glad that it wasn't a subdural hematoma, which develops between the brain and the dura.  That would have meant that they would have had to go through the dura, which would have presumably just made the surgery that much more traumatic.  I'll take whatever luck I can get at this point in time.

But....had I not gone to the ER last Monday night and gotten a CT Scan, Dr. Shapiro wouldn't have known by the MRI I had on Wednesday (about 36 hours later) that the fluid build-up had almost doubled within that short period of time.  That's why he wanted to operate within 24 to 48 hours.  Time really was of the essence.

So, please, always go to the ER if you are barfing like crazy and have a headache, especially if you've bumped your head recently!  I felt stupid at first, but boy, am I glad I went!

Frustration

I am sick of laying on my left side.  I can't go outside because it's so windy and cold and that makes my sutures hurt.  And I'm still trying to get everything sorted out at MPRI with this latest delay.  At this rate, I'll be lucky to have the proton therapy done by the end of summer.

This latest setback really has me bummed out.  I just wish it was over.  I'm beyond frustrated and I just want my normal life back.  

When I was in the hospital, I did get to reconnect with one of my old nurses, Jason, when I was in the hospital.  He was my first nurse and helped me through that seizure I had in the room late in the day of my first surgery.  This time, when I kept crying to the neuro residents and to Dr. Shapiro about how much pain I was in after the surgery (and I really WAS crying), he was very comforting and patient with me.  He reminded me that having two surgeries so close together is very tough.  Even Dr. Shapiro was trying to comfort me.  

Kevin was his usual awesome self through this latest ordeal.  And Kevin's dad, Eddie, was also awesome.  He came up to help take care of the kitties (and Kevin).  And he was the perfect visitor right after surgery!  

When I was transferred out of the neuro ICU and into the regular ward, I had 3 roomates in a 24 hour period.  One older lady had just been diagnosed with pancreatic cancer, and was going to have surgery on April 27th.  Another just had half her pancreas taken out and was in a lot of pain - and in for a long recovery.  I guess compared to these two, I shouldn't complain...

The Neuro Visit

Hi everyone!

It's me, Jenny!  {Waves}  I'm finally feeling up to writing (more on why that is later), so I thought I'd pick up the story where Kevin left off.

So, the visit with Dr. Shapiro was pretty standard.  I was a little nervous, and of course Kevin was a lot nervous.  Kevin didn't come right out and say that he thought I would need surgery, but he did say that he thought the Doc would put me on anti seizure medicine.  I didn't really know why, but I've been kinda in the dark throughout this whole ordeal, so I let his comments slide.  I was seriously thinking that there's no way I was going to need to have surgery.

I was wrong.

After about 5 minutes with Dr. Shapiro, and conducting some simple neuro tests (walking with feet in front of the other and all that jazz), he came out with:

"It's a pretty big one (meningioma) and it needs to come out."

To which I responded with a laugh, "You've got to be kidding me!"

No joke.  He proceeded to give us an overview of the procedure and answer the many questions we threw out at him.  I'm wondering how I'm going to tell my parents.  UGH, yet another health-related thing to deal with. My poor husband.

(Side note: I do have ankylosing spondilitis and Crohn's Disease and have had some really, really bad times since 2000.  BUT, what's so ironic is that both of these conditions are under control right now and I'm probably the healthiest and fittest of my life.  So, I must have really bad genes or really, really bad karma, or maybe both!)

So, we waited about 10 minutes while Dr. Shapiro and his nurse set things in motion.  First, we had to pick the date of the surgery.  I could have done it at the end of January, but we were also given the option of Feb. 12th.  We took the 12th for many reasons, especially logistics of getting my parents up here, and frankly just to give me time to prepare myself mentally and physically for the operation.

Dr. Shapiro indicated that I would probably be in the hospital for 2-3 days post-surgery and then a recovery of 6-8 weeks.  6-8 weeks!  This whole thing is getting ridiculous!  Can I not just ever get a simple sinus infection?!

So, I left with instructions for getting a Steath MRI and blood work in preparation for surgery. I also left with a script for Keppra, an anti seizure medicine....

The confirmation...

January 16th, 2009.  Finally our appointment with the ENT.  Jenny thought I was nuts going with her but I knew I needed to be there.  We go back into the exam room and we were waiting for the doctor.  I heard some noise outside of the door and the Doctor was discussing our case with her intern.  I heard her say "meningioma" finally a professional confirmation and relief.  She came in and said, "Well it looks like you have a benign meningioma".  We need to get you referred to a neuro-surgeon to see what needs to be done.  After the initial shock had worn off the doctor said, "Jenny do you know a neuro-surgeon that you would like to see"?  I immediately responded, "Dr. Scott Shapiro".  My wife's jaw hit the floor with shock and amazement.  Jenny said, "What.. huh... how do you know this dude's name" and I responded, "I had a week to due my homework" at which she responded, "Unbelievable, of all things a freaking brain tumor". 

While the week leading up to this appointment was stressful it was also really nice to be prepared.  So many folks walk into a doctors office and get completely blind-sided by a diagnosis of this magnitude.  Instead of thinking about what doctor you need to be referred to, you are thinking about how long am I going to be alive!  Thinking about yet another doctor appointment is the LAST thing on your mind.  You could just as easily shake the magic 8-ball to get a doctors name! 

So we finally left the doctors office and we both went to work.  The ENT called later that afternoon and confirmed an appointment with Dr. Shapiro on January the 14th.

Researching fool or better yet a fool researching....

After the initial shock had worn off, I decided that I needed to be as informed about brain tumors, symptoms, prognosis, treatment, and recovery.  I had one week between the MRI and a followup appointment with the ENT to find out what was going on.  Of course, I already knew! But I had no idea what this tumor was.  

I can honestly say, the first thing that comes to mind after seeing such an image, is just a overwhelming sense of fear.  I was absolutely powerless to help my wife.  I had no idea what she was about to go through.  So I made it my mission to educate myself as much as humanly possible.  I had one week to figure things out.  

The automatic reaction to seeing and realizing that something is growing inside a skull is not a fun reaction.  However, I needed to dig in and start figuring out how I could help.  I started with wikipedia and looked up brain tumor.  There were some general descriptions about the different types of tumors and being the optimist I followed the link to Meningioma (follow link to read description). I was immediately struck at how similar the image from my wife's head looked like the image of a meningioma... finally a little bit of relief.  

I began searching google images for Meningioma tumors and I became more convinced that this is what was growing inside Jenny's head!  The majority of these tumors are benign and usually can be removed completely depending on the location.  There are a few options for treatment- Gamma Knife, Radiation therapy, and surgery.  The course of treatment depends on the size and location.  Fortunately, in Jenny's case this tumor is located in the best possible location.  It's called a convexity tumor and is located on the upper right hemisphere of the brain (the images look like it's on the left, but it's actually on the right side).  It not wrapped around optic nerves and all that really important stuff deep inside your head! 

The tumor is not growing within the brain tissue but rather growing into the brain.  If you can imagine pushing a baseball into a large sponge then you have a good idea of what is happening inside Jenny's head.  These tumors originate and grow from the dura that wraps around the brain and spinal cord.  They are more common in women (almost a 2:1 ratio of women to men) and a lot of research indicates that these type of tumors have receptors for progesterone and estrogen.  Some pathology reports indicate that these types of tumors look very similar to fiberoid tumors that can grow inside a uterus.  While I was not 100% sure what we dealing with, I was fairly confident and much more relieved at this point in time.  

So the next question, if you have a tumor than who should treat it? I did some simple searches on google for "top neuro-surgeons in Indianapolis" etc. etc.  I immediately came across the name Scott Shapiro.  He is the chief of neurosurgery at Wishard Medical center and a professor of Neurological Surgery and Indiana University Medical School.  He also happened to be the surgeon that operated on Lance Armstrong's brain when his cancer metastasized into his brain. I also spoke with another Doctor that is in my furniture/woodworking class and he spoke very highly of Dr. Shapiro.  So I had the name of surgeon that seemed to fit the bill.