Busy Thursday

Halloween was a very busy day and it had nothing to do with candy or trick-or-treaters.

At 8:30 I spoke with my endocrinologist to discuss the results of my diluted prolactin test.  The results showed that my prolactin levels were only mildly elevated (85) rather than extremely elevated (250) from normal (15).  That means that I have a tumor that is pressing on the pituitary gland and the treatment is surgery.  I got a referral to neurosurgery.

At 12:30 I got a call from the neurosurgery department to schedule an appointment.  They had an opening at 4:30 and asked if I was available.  I took the appointment.  Then I called Amy to see if she could leave work early (she could) and my parents to see if they could make it from Santa Clara to Sacramento in the next 4 hours (they had to reschedule their AT&T internet installation).

At 4:30 the four of us met with my neurosurgeon.  We looked at my MRI and discussed my tumor and treatment options.  Surgery is the only treatment.  It will be the Endoscopic Transsphenoidal surgery that I mentioned a couple weeks ago.  The surgery is an in-patient procedure that will take about 4 hours and will require a 1-2 day ICU stay afterwards to monitor me.  The removal of the tumor can cause some pretty dramatic and immediate hormone fluctuations as the pituitary gland starts to correct all the imbalances; sometimes that can cause some nasty side effects.  There is also a very small risk for CSF (cerebrospinal fluid) leakage.  My neurosurgeon has done literally thousands of these surgeries--he spent an entire year as a surgical intern doing nothing but pituitary surgeries.  So I'm in good hands.  The current backlog for surgical time for my surgeon is 2 months.  And there is nothing about my case to push me to the front of the line.  I don't have a surgery date yet, but it should happen by the end of the year.  I signed up to be on the short-notice list for cancelled surgeries, so it might happen sooner.

All the tests and visits I've had over the last month have made us really thank God that Amy's employer provides awesome medical insurance.  All of my blood tests (15) and MRI's (2) are free.  All of my doctor visits (3) have been $10 each, including the specialists.  And my surgery will be free!  Hospital Inpatient Care is included with no copay.  Ironically, if this was an out-patient surgery I would have to pay $10.

And I'll end with another bit of irony that happened Thursday.  On Tuesday I mailed my dad his birthday present.  It was delivered on Thursday in Santa Clara.  While my dad was with me in Sacramento.

Resolutions Revisited

When I was making my New Year's Resolutions for 2013 I decided not to include anything health or fitness related since resolutions are often broken.  My weight loss journey is more about a lifestyle change than it is about making resolutions.  I did make three New Year's Resolutions for this year and in this post I'll review my success in keeping them.

1. Post more pictures to Facebook.
2. Blog consistently.
3. Write thank you notes.

1. Many of my friends post a lot of pictures to Facebook.  I enjoy seeing their adventures, vacations, children, and pets so I wanted to join in the fun.  I failed.  Whenever Amy and I travel, which we've been fortunate to do quite a bit of this year, we always take a great deal of pictures.  But therein lies the problem--too many pictures taken on multiple devices requires time to sort through them all, delete the bad pictures, and organize the good pictures.  The pictures from our Southwest vacation (Painted Desert, Grand Canyon, Hoover Dam, Las Vegas), hiking Eagle Falls and Vikingsholm (Lake Tahoe), camping and hiking the Rubicon Trail (Lake Tahoe), and attending a San Francisco Giants baseball game with my parents before taking a sunset sailing cruise on San Francisco Bay are all sitting in nice labelled folders on my computer.  The only pictures that wind up on Facebook are ones I take with my iPod when I have access to wi-fi.

2. I want to blog about more than just my health related issues--weight loss and now my brain tumor.  Seeing as it was nearly Halloween when I wrote my first blog post of the year, and it had been more than a year since my last blog, I would say I failed this resolution too.  Hopefully I will finish the year on a strong note in this regard and keep it going into the new year.

3. Neither Amy nor I are very good about writing thank you notes.  And this is something we both want to change.  This was the most important resolution to me, and the one I want to work on the most.  Amy's extended family is always very generous about sending Christmas gifts every year and I can't remember the last time we sent out thank you notes to them.  Part of the excitement of Christmas presents with Amy's family is opening the Illinois boxes and the Michigan box that have come in the mail.  We've gotten some wonderful gifts from her aunts and uncles over the years:  gift cards, calendars, scarves, books, kitchen supplies, and food to name a few.  Every year we make a list of the gifts we got and who sent them and we remind each other to write thank you notes.  And every year around March or April we realize we forgot to write thank you notes and by then it seems an awkwardly long time away from Christmas to write a thank you note.  So we resolve to write them next year.  And the next.  One of these years we need to actually write the thank you notes since we really like the gifts and appreciate the thought that goes into choosing them.  This is the most important of these resolutions and hopefully one that will be fulfilled next year.

New Year's is only 2 months away.  What are your resolutions going to be?

Brain Tumor

First things first:  this is a benign tumor on my pituitary; it is not cancerous at all.  Now for the details.

Last week I was having routine bloodwork done and for various reasons I asked my doctor to include a basic hormone panel.  Luckily he agreed, because my hormones are all out of whack.

• Prolactin is 500% of normal
• Testosterone is 20% of normal
• Luteinizing Hormone (LH) is 0% of normal
• Thyroid, Cortisol, Thyroid Stimulating Hormone (TSH), and Follicle Stimulating Hormone (FSH) are all on the very low end of the normal range

My doctor's preliminary diagnosis was a prolactinoma:  an adenoma (glandular tumor) on my pituitary gland causing an increase in prolactin production.

The next step was an MRI of my brain (yes, they found one!)  and a referral to an endocrinologist.  My parents, Amy, and I met with her on Wednesday.

My official diagnosis is Hypogonadotropic Hypogonadism resulting from a Benign Neoplastic Pituitary Adenoma.  In other words, there is a small non-cancerous mass on my pituitary that is affecting my body's ability to make the proper amounts of hormones. The tumor is about one centimeter in diameter, or roughly the same size as the pituitary gland itself.  My MRI showed evidence of hemorrhage in the tumor.  This likely means that the tumor bled into itself and basically killed itself off.  Even though that sounds scary, it means the tumor won't grow in size. So I guess that's a good thing.

There are two types of pituitary tumors and the difference is important--one is treated with medication and the other is treated with surgery.

1. Functioning tumor.  Functioning pituitary tumors produced their own hormones; in my case that would be prolactin.  This kind of tumor is typically treated with medication.  I would have to take a pill twice a week that would shrink the tumor and halt the excessive prolactin production.  Once that happens all the other hormones should normalize on their own.  This is the better type to have.
2. Non-functioning tumor.  This type of tumor does not produce its own hormones, but instead squishes the pituitary gland and causes that to over or under produce hormones (eight hormones are controlled by the pituitary gland).  Medication typically does not affect this type of tumor and therefore surgery is required to remove the tumor.

The surgical option is an Endoscopic Transsphenoidal Surgery.  The surgeon would go in through my nose with endoscopes since the pituitary (and my tumor) are located just behind the nasal sinus cavity.

Based on my prolactin levels (500% of normal rather than 5000%), the endocrinologist is leaning towards this being a non-functioning tumor.  That means surgery is the most likely treatment.  On Thursday I had more blood taken (I'm feeling like a pincushion with three blood draws and an MRI contrast injection in a nine day period) to help determine which type it is.  Sometimes prolactin levels can be so high they cause a "hook effect" and show up as only slightly elevated.  This test dilutes the prolactin out over several samples to test for this.  It takes about a week to run.

It's odd wishing for this to be a functioning tumor producing a massive amount of prolactin, but I'd much rather take a pill twice a week for a couple years than have brain surgery.  Although as far as brain surgery is concerned, this is probably the best kind to have to have.

So that's where I'm at right now.  Waiting on this latest blood test to determine whether I get sent to neurosurgery or the pharmacy.  Hopefully I'll know by the end of next week.