Home finally

I came home from the hospital today.  All went well.  The nursing staff were great, but I guess when you are lucid ICU patient, they are a little thankful for that.  I'll never forget P, C, K, A, D, and K.  I hope you are all continue to be blessed with your good work.  I have so much respect for what you can do and the patience that you show.

Worse event:  getting a wrist IV.
Best event:  waking up :)
Second place:  Having 6 cups of jello, 4 popsicles and 2 juices for dinner on Saturday night.  You can imagine how much fun that was with my blood sugar/diabetes, but it was awesome for my cotton mouth that the steroids had given me.

Just had dinner and I am feeling good.  Blood sugar was awesome before dinner, 107, so it seems that the steroids are out of my system.  My vision has completely be restored.  I feel like I have a cold. I am stopped up and tired, but taking it easy, I think I will be like brand new soon.  It amazes me what I have just experienced and how close to normal I am once again.

The ENT placed stints in my nose to correct my deviated septum that didn't get fixed right the first time.  I have to call tomorrow to get an appointment to have them removed in a week or so.

I feel like I have a new outlook on life.  I read a grown-up book while at the hospital and since I'll need to continue to rest, I've already started another book.  I am sure this roll won't last long, but it is nice taking a little time for myself.

Thank you again for all your love and support.  I remained at peace right up until it was time to say by to Hans and I shed a few tears.  I am so thankful God protected me and allowed me to come back to my family.

It's time

I met with Dr. E to discuss the surgery today.  He showed me how he was going to go in, fold back the nasal membrane, and drill a hole through the bone to get to the pituitary gland.  OH WOW!!!!

All in all, I should be done by 3 pm tomorrow in the recovery room.  Once I am awake, they will transport me to ICU to monitor me for the next 24 hours.  Some of the bad things that could happen are blindness or brain fluid leakage.  Neither of those sound very good.  So, my hope is to wake up from the fun, and spend a quiet night in the hospital reading my book.

I'll post when I can, but tomorrow will be a busy day getting ready for the surgery and taking care of a few things before getting to the hospital.

I love you all and thank you for following my story.  It has been a fun ride and Siddy, it is time for you to get off!  Life is going to be so much more when I have you outta there!

Just a few more days.....

First pre-op with Dr. E (ENT) is Thursday afternoon.  Second pre-op with Dr. S (neurosurgeon) is Friday morning before I go to the hospital.

I have just a few days to get things in order and of course, I have no idea how I will get it all done.  It is interesting how "at peace" I am .  I've kept myself busy with work which has helped.  I've kept busy around the house, that never seems to end.

I know I don't express myself religiously very often, but I know God has given me that peace.  I have wonderful family support, friend support, and even stranger support.  I know this is all going to be ok.  I hope it goes smoothly and without any craziness.  I want to wake up and be looking at Hans.  I want him to smile and tell me it all went well.  I know how much he loves me.  He won't be able to lie to me if it didn't.  It will all show in his face.

Two weeks

I am sitting in my office, working on an exam I will give two days before my surgery.  I'll get it graded, then pass my class over to Dr. D.  I'm getting all my course materials ready so he knows what to cover.  I am not worried about that, but he and I both take an interest in our students' learning so it is hard to let go, even for a day.  I trust him the most with my students.

Two weeks.  So much to put in place in my plan for the worst and hope for the best.  I think I'll have a to do list that is constantly evolving.  Glad my favorite way to do lists is on the computer.  I can mark out, annotate, delete, add as things happen....constantly evolving.

Focus and preparation.  That has to be my mantra these next 14 days.  Do what I can to the best of my ability.  I have hope and faith.

D Day coming

I had a few phone calls this afternoon and got a lot of things in place.  My surgery is scheduled for 18 Nov.  I have an appointment with Dr. E on Thursday afternoon so he knows his plan to get into the middle of my head.  I will spend at least one night in the hospital.  If all goes well, I will go home on 19 Nov.

The MRI produced 328 photos.  It is amazing to look at.  I figured out a way to copy my favorites so I could share them with you.  Below, the object in the center is Siddy.  You can see my nose on the left, and the plan is to go in through the nose, get rid of as much as possible of Siddy, and see how I do with him gone.

Pretty amazing how that big blob doesn't belong there.  This is a picture cutting my skull in half..

Now if I look from the top, and again, cut, You can see my eyeballs, the optic nerves going back, and Siddy.  He's glowing for you so my guess is that the dye they inject you with for contrast must be absorbed by the tumor.  So darn cool!!!

So, by Thanksgiving, I hope to be functioning reasonably well.  As Hans as joked, we may be having pudding and pain killers since half the family will be recovering from surgery.

I'm thankful for your prayers and thoughts as our family goes through my surgery and Zane's (tonsil's removed) and give Hans the patience of a saint.  His parents will be coming to stay with us and help us through this time.  I am thankful for them too.

Unless something changes, I probably won't be posting gain until 17 Nov after the ENT visit.  The 18th will be a blur I am sure.  I have a pre-op appointment in the morning, then the surgery that afternoon.  Waking up to see Hans will be the best thing that could happen, even better if I see him more clearly.

More apointments

On a very snowy, windy, icy morning, I met with Dr. S to discuss Siddy's status.  After making sure I was a healthy candidate for this procedure, he told me will be going through my left nostril and removing as much of the tumor as possible.  Because of its size, he may not be able to get it all.

He uses an ENT, Dr. E, to "open the door" and he follows and gets his prize.  The whole procedure will take about an hour and a half.  I will have an overnight in the hospital to ensure everything is good and then I will go home the next day.  After another day of rest, I can return to work if I feel like it.  Not bad.  Of course, things can happen and the plan could change, but right now, that is the plan of attack.

I have to meet Dr. E and let him view the MRI so he can plan his attack on the door (we're going through bone here).  That appointment is scheduled for 17 Nov.  Surgery will be sometime after that, so I'll let everyone know when I know.


After life has gone back to close to normal, I'll get another MRI to see how things look inside.  He will then be able to determine if any additional treatments will need to be done.  Treatments would include a special laser that zaps the tumor (I don't know much on this, I'll learn more if needed).  I will get to have an MRI every year to see how Siddy is doing.  So, my hope was that Siddy would be all gone, but probably some part of him will always be with me.

This has definitely been a fun and interesting month.  I've gone from blurry vision to knowing that I will have a tumor removed from my head.  But, the way the tumor is located, so many other minor issues could be fixed as well.  The hypothalamus sits at the top of the stem that feeds into the pituitary gland.  If the hypothalamus is having trouble working, or getting its chemicals to the pituitary, then the pituitary doesn't work right.  If he is able to get that all cleared out, things might be very different for me.  Siddy, you are a blessing and a curse, but I am looking forward to finding out what the future holds when most of you are gone.

Anatomy 101 (warning: brain pictures included)

My big day with the Neurosurgeon is tomorrow!!!  Of course, Colorado is going to dish out a snow storm for me to endure as well.  I am considering spending the night at work because it is lower elevation and makes the drive to the Dr. S a little easier.  Forecasting 4" to 8" of snow at my house with winds 60+ mph.  Ok, so it is going to be a fun white-out situation.  If I don't go home, then Hans is stuck with the boys and their potential school cancellation, etc.  At least Day Camp will be open so if Hans can slide down there and back home, he can work from home in peace.  :)

Onto the anatomy lesson.  This is a picture from Netter's Anatomy book of the pituitary gland.

It is that onion looking thing in the middle of the picture, with a long stalk thing headed up.  It is the size of a pea, but being the master gland, a pretty important little thing.  According to the Dr. H who read my MRI, the tumor is in a posterior position on the pituitary gland, encasing the stem/stalk thing, and then filling the area up, which is where the optic chiasm is.  The optic chiasm is pretty darn cool.  Your optic nerves from your eyeballs come together near the pituitary gland and Siddy is pressing against it, mainly on the right side.  This is why I am having trouble with my vision in my right eye the most.

In this picture, you can see the optic chiasm sitting on top of the pituitary gland.  The optic chiasm is going into the frontal lobes (top of the picture.  So, tomorrow, I find out how Dr. S is going to get into the middle of my head and remove Siddy.  I am guessing through the nasal cavities.

If you can read the labels in this picture, you will be able to see where the pituitary gland is in comparison to the eye sockets and the GIANT nasal cavities.  My best guess right now is they will go up through those cavities and them go at the thing.  Yes, it is tucked neatly in a nice bone bowl to keep it nice and safe.  Good design.  That little yellow circle near the pituitary is the optic nerve, so a lot is happening in a really small space.

I picked up my MRI disc today to deliver to Dr. S tomorrow.  Oh yes, I tore into that sealed envelope and looked at the pictures.  Freaking cool.  Yep, there was a brain in there.  But I also saw this HUGE mass that I think is Siddy.  Reality is starting to sink in.  Seeing it makes it more real.

I am happy to have my appointment 28 days after my diagnosis.  Seems like forever.  In those 28 days, it has been confirmed and now we move forward to removing it.  I find out all of that tomorrow.  Right now, Zane is scheduled for a tonsillectomy on 21 Nov.  I don't know how that will be affected.  I want to improve his sleep apnea problem so he can do better but I need to get better too.

I don't know if I will sleep much tonight.  A lot to think about and of course worry about.  I'm still trying to put the best face/foot forward until I have a reason not to.  Our little family is doing the best we can with our variety of life issues.  I know God does not give me more than I can handle.  Some days I wonder, but I also know that to be true.

More tomorrow once I've got the next steps figured out.  Siddy, your days are numbered.

Tired

Today I had no energy. I slept until 10 am. I felt like I was always in a fog. I felt like I had trouble seeing. The fog was in both eyes. Nate was being a stinker so he lost his privilege to go swimming so he was stuck hanging with me. I went and poked around Target and stayed clutched to the shopping cart. When we returned to Silverthorne to watch Hans and Zane swim, I was thankful to just sit and watch. I think if I would have let myself, I would have fallen asleep.

Amazing how the days do vary. I want to stay up and watch the Spartans game against the Badgers and the Rangers against the Cardinals, but I think I'm just going to go to bed and find out the results in the morning. Just so tired today....

Appointment with the neurosurgeon

This week I got my appointment set up for my consultation with the neurosurgeon. It isn't until 2 Nov. This gives me time to get all the things I need together for him. I have to pick up a CD of my MRI. I have to wonder if I can read/view any of it.

It has been an interesting week physically. I had two days where I would swear my eyesight was great. I also had three days where I tolerated low grade headaches. I've had moments when I couldn't sleep at night several evenings.

I'm doing my best at staying as calm and relaxed as possible in hopes that I can stay as strong as possible. I will try my best to relax this weekend as well. :)

Macroprolactinoma

Well, I learned what type of tumor I have.  Dr. B did some blood tests and they showed that the tumor is causing a release of prolactin by the pituitary gland.  This should technically cause my breasts to leak, but that has never happened.  All I can say, I don't want that to start happening.

I've been trying to learn all the new medical terms.  The ophthalmologist told me I had bitemporal hemianopsia because I was losing my peripheral vision.  He told me it most likely was caused by a pituitary tumor pressing on the optic nerves.  After doing some reading, I know this is a common tumor, but in most patients, it never manifests itself where it needs to be removed.  I"m just special.

There are so many questions still that need to be answered.  I am hopeful that a phone call will occur on Monday so I can get the next appointment set up.  My gut says this is going to move fast, but we'll see.

We are spending the weekend in the mountains and have had a great, relaxing time.  I mentioned to Hans on the drive up that my right eye was bothering me more than normal (really my new normal).  Zane heard this and asked what I was talking about.  I told both boys about Siddy, that I'd be in the hospital a few days, then I'd get to come home.  Pretty much didn't phase either of them.  I don't think they realize what is really going to happen, but we'll talk about it again soon, I'm sure.

Siddy, your days are numbered.

A little news....

I know that my surgery will be in Colorado Springs.  I know that one of the doctors associated with Colorado Springs Neurological will be doing the procedure.  It will probably happen within the next four weeks because I am having the vision issue.  Since Siddy is causing a loss in quality of life, they want to get it fixed as soon as possible.

I told Dr. B that I had named it.  When I told him what it was, he laughed and thought it was very clever.  Thank you again CS.

I wish I knew more about how long I might be out but I don't.  Yes I know, personal and family first, then job.  I can't help it, I love my job.  I still wake up every morning excited to go to it.  Crazy!  I think the best time is during EI, when that kid comes in and can't quite get a topic figured out but after struggling a few times on the board, it finally clicks (and you hear the sound!), it makes me smile.  Goofy I know.

The Beginning

So much has happened in such a short period of time.

On or around Wednesday, 21 September 2011, I noticed a film in my right eye.  At least that is what I thought it was.  I'd rub my eye (yeah, I know) but whatever was in there wouldn't clear.  I had a doctor's appointment scheduled for Friday, 30 September 2011, so I figured I'd talk to Dr. B about it.

I did, and he thought it might be allergies since my blood results had indicated that my white blood cells were working overtime fighting allergies.  He gave me something to help fight the allergies with orders to let him know in a couple of weeks if things didn't change.  I casually asked him if it would be OK to go to an eye doc and he said yes.

I called my eye doc later that morning and got an appointment for Tuesday, 4 October 2011.  The time was before I was scheduled to give the Science Final but the receptionist said it would only last 30 minutes.

I arrived at the appointment early so I could out the obligatory paperwork (I hadn't been to see him since 2004).  I go through all the normal "eye" tests:  color blindness, peripheral vision, distance, depth perception, etc.  After Dr. D reviewed my results, he thought I'd not done the peripheral test seriously or something was done incorrectly.  I went to complete it again and gave him the same results.  He then had me do a fancier peripheral vision test and this one came with a print out showing what I saw.  Clearly it showed that I was not seeing well and it wasn't in one eye but both.  At this point, it is waaaay past the 30 minute mark so I am getting a little concerned.  Dr. D comes back in and tells me I have something wrong.  I can't remember the fancy medical name, but basically I am losing my peripheral vision.  He told me that in 95% of all cases, this is due to a tumor growing on the pituitary gland and it is pressing on my optic nerve, thus the lost of vision.  This made sense to me.  He called my doc, Dr. B, to get an MRI of my head scheduled.  He asked me if I was OK.  I told him I was because I didn't know anything about what was going on so I couldn't worry about anything yet.

Dr. B called me that evening to see if I had gotten my MRI scheduled.  I had.  He told me this is not common and he only sees this diagnosis about once every 2 or 3 years.  I still wasn't worried, I didn't know much, but I decided to start with some Internet research.

One of the best sites I have found with good information is the Pituitary Network Association (www.pituitary.org).  This site said that it is estimated that 1 in 5 people have a growth on their pituitary but most never manifest major symptoms that require removal (like vision loss).

My MRI was Friday, 7 Oct 2011.  I slid into the closed tube and simply relaxed, listening to the sounds of the machine.  All was good but I didn't enjoy the injection of dye.  No metallic taste for me, but the injection was uncomfortable.  The nurse said my doc would have the results after 48 hours.  I thought about it in my head and said, hopefully by Wednesday.

Monday, 10 Oct 2011, I had the day off from work while the rest of my family went to school or work.  I did some things around the house, a little cleaning, and some work on the course I am teaching.  I didn't fell too bad, other than my normal tired, and that had started about 4 or so months ago.

Tuesday, 11 Oct 2011, I woke with an incredibly sore throat and I knew I had Strep.  It made sense because of all going on.  I emailed in sick and called Dr. B's office to get an appointment and meds.  In a way, this was a good thing.  Yep, I felt horrible, needed that antibiotic prescription, but it allowed Dr. B to let me read the MRI results instead of listening on the phone.  I kept reading large sellar mass .... measuring 2.8 x 2.2 x 2.0 cm.  I knew I had to learn some big fancy medical terms to better understand what was going on.  I understood volume.  That growth/tumor/doodah was big, in my head, and didn't need to be there.  Hence, to keep it in perspective and make it understandable, I decided it was about the size of a key lime.  Now, for those of you who  don't know, the pituitary gland is about the size of a pea. Pretty darn small for the most important of glands in your body (he's known as the master gland).  I just pictured a key lime glued to a pea.  Holy crap, this thing is huge!  OK, still not really panicking, I don't know what the future holds other than, this thing has got to go!  Dr. B put the request in for his favorite neurologist (he warned me they tend to be a bit arrogant but I can see that, since they get to go poking around in your skull with sharp tools).

This is all I know.  I have something in my head that can change my life forever.  It also explains so much that never had explanations.  This possibly affected my ability to get pregnant.  If so, I wouldn't have my two squirrels I love so dearly.  I am not mad, but I can't say I am excited to have a tumor in my head.  At least I know its there, and it needs a name.  My old college friend CS suggested Siddhartha.  I had to look that up (yeah, I need to read more!) and I think it is perfect.  (Siddhartha means pathway to enlightment).  It fits well, so Siddy, welcome to my head and I can't wait to see you go!

To be continued.....