Prolactinoma history

I mentioned I would go into talking about my prolactinoma so I would like to do that today.
Every 18 year old has stressors.  Most have to do with boys, the future, college, work, family, and friends moving to new schools.  And don't get me wrong, I also dealt with all of those, but when I was 18 I was hit with a different whammo.  Tumor.

Rewind:
I hated high school.  Abhorred it, actually.  It was a terrible place filled with back stabbing friends, immature boys, and people who really didn't see the value in education.  I just wanted out of there.  I hated it so much I would get migraines, feel extremely nauseous, feel dizzy, feel exhausted all the the time, and I even dealt with some pretty rough depression.  During this time I was also doing ShotoKan Karate 2-3 times a week and considered myself quite active.  So when my periods started to get lighter and lighter around my sophomore year and when they were completely gone my junior year, I attributed it to the extreme amount of stress and activity I was under the influence of.
And then?
And then that glorious day of graduation came.  Early in the spring I had finally achieved the rank of Black Belt in ShotoKan karate.  It was a 10 year battle and I was so proud.  My physical activity dropped off as I took a break after I got my black- when my periods didn't return I didn't worry too much.  I figured after graduation my body would bounce back.  So there it was, graduation day.  I wore my black belt around my neck over my robe at graduation and I literally skipped back down the aisle after it was all over.  That summer was my summer of freedom.  I was finally done with hell.

Physical activity= minimal. Stress= non-existent. Bring on the healthy body.  But that summer didn't go the way I had planned.  Instead of feeling better, I kept feeling worse and worse.  I was nauseous nearly all the time I was awake, I would get extreme bouts of dizziness that made things like driving scary.  The bouts would last 15 seconds at the longest but you only need 3 to crash a car. It got to the point where I was so exhausted that going to the grocery store with my mom was my outing for the day.  After that I would need to go home and take a long nap to recharge.  Finally when August rolled around, I told my mom and dad that before I start college in a few weeks, I wanted to get some blood work done just to rule things out.  I wanted to get my health on track before school.

Blood work:
Did some hormone panels and what came back was confusing.  The doctor thought for sure there was a lab error.  I looked like a girl, I had boobs, long hair, no facial hair- but the results came back with absolutely no estrogen or progesterone. None.  Too low to be detected by the tests.  My amazing (truly amazing) general practitioner ordered a redo of the tests but this time thought to add Prolactin to the test just to see what that is doing.  Results came back.  Once again, absolutely no estrogen, no progesterone, and my prolactin was at 150.  For a non-pregnant female prolactin should be anywhere from 2-25ish.  As soon as the Dr. saw that she told us we needed to go on over to the hospital and get a brain MRI.  She said that she was suspicious something might be up with my pituitary but left it at that.
So there I am, 18.  Now the Monday before I start college getting a brain MRI (school started on a Wed).  The hospital I went is very old and the technology is very outdated in my little hometown.  The machines, while they do their job, are old and slow.  I laid in that tube for an hour and 35 minutes trying to keep completely still with the loud magnets ka-chunking around my head in the tube.  The radiologist was out that day so I wouldn't get my results until Friday.

And then it happened.  Phone call.  "We would like you to come in as soon as you can- today if possible to discuss your results." I knew right then and there it was bad.  And it was, but not as bad as I imagined.

So there I was, first Friday of college being told to my face I have a type of pituitary tumor called a Prolactinoma.  I named him Pituitary Larry (Larry for short) to add comedy to the situation to help myself.  A benign tumor, almost always treatable with medication, They referred me to a specialist in Portland, OR and I would need to go down there to get treatment.  No one in my town had dealt with it before so they wanted to give me the best care possible.  And if a 7 hour drive meant good care, that's what it would take.  I couldn't get into Oregon Health and Sciences University (OHSU) until late September and over that one month my health was the worst it ever got.  I would sleep upwards of 12 or 13 hours a day.  Basically, when I wasn't in class on campus, I was asleep.  No matter how little I ate, I was still gaining weight, and I had the lovely joy of beginning to lactate.  And as a virgin, lactating is super scary.  You know there's NO way you can be pregnant and yet you could still totally nurse a little baby.  My breasts hurt, my body ached- every day dragging myself to class was miserable.  When I finally arrived and was seen by my new doctor 7 hours from home and we did blood draws- my prolactin (in one month!) had shot up to 480.  That is 19 times the amount of prolactin I should have in my body.  We also did another MRI and this picture's resolution was much better so they could actually measure it.  I was diagnosed with a 1.5x1.7 cm macroprolactinoma.  If you look at a ruler, 1.5 or 1.7 cm doesn't seem very big.  But when you think about how little spare room there is in a brain, that's a very big spot.  

I was told there were two treatment methods: surgery and meds.  They nearly always try to treat with meds first as the meds work so darn well for this kind of tumor.  I could pick Bromocriptine- a drug that has been around for a very long time, is highly successful, and you take it very day with pretty noticible side effects.  Or I could pick Cabergoline (Dostinex) which is newer, you take it once to twice a week, and while the side effects are much stronger the day you take the pill, the rest of the non-pill days you don't feel the side effects.  I opted for the Cabergoline.  Why feel somewhat sick every day when I could feel really sick only twice a week?

The meds are hard on a body.  They suggested I take the pill right before I go to sleep so the first 12 hours or so which are some of the hardest, you are asleep for those.  The day after I take my pill I call my pill-days.  Pill days suck.  A lot.  My body really doesn't like the medication.  I just kept reminding myself that my body feels terrible because the meds are attacking the tumor.  That helped me a little, but man oh man did I feel sick.  When I first started out I was on a full pill twice a week.  My body would feel so sick, so weak, so exhausted, and I was irritable, still dizzy, and just overall not very fun to be around.

In December I did another MRI and apparently, I turned out to be a poster child for the drug.  I was even asked if they could use my before and after MRIs to show other patients.  My tumor had shrunk drastically.  I was down to .9x1.0 cm!  So we decided to stay on the meds.

Earlier this year, in February 2014 I did another MRI and guess what!?!??!  NO VISIBLE TUMOR TISSUE!!!!!!!!  Prolactin has been normal since summer of 2013 but YAY! No TISSUE!  So we decided to cut my meds back. I made the official announcement to everyone that I was tumor free.  We even cut me down to a maintenance dose to 1/2 pill once a week.  In 2012 I was put on 1/2 pill twice a week- and let me tell you, the side effects from 1 pill twice a week to 1/2 pill twice a week?!?  SUCH A HUGE DIFFERENCE.  For real.  Seriously.  For all of you who are on a high dose still- have faith. As soon as you can get your dosage down you will feel so much better.  1/2 pill twice a week still sucks compared to nothing.  Pill days are still bad, but not nearly as bad.  I have good ones and bad ones but for the most part, it's tolerable.

As I was saying, he dropped me down to 1/2 pill once a week.  I was feeling great, feeling great, feeling great... and then all of a sudden, feeling not so great.  My breasts started to grow again and get very tender.  I was putting on weight and feeling tired again...  At this point I had had a boyfriend for over a year and so I thought perhaps I was pregnant?  I took probably 10 tests over the course of 2 months and all were negative.  I finally went back to the doc when I realized I was lactating agian.  Larry was back.  So back up to 1/2 pill twice a week.  Which finds me here.  Still on a half pill. I take Cabergoline Saturday nights and Wednesday nights so that at least one of my pill days is on a lounge-around day.  I'm dreading taking my pill tonight... I always do.  But I know it's helping me get better.  And recently the cost of my meds went down! YAY!  so I don't hate taking it as much.

I'm sure I will think of more to mention later, but that's the gist.  So now that we are all caught up with my brain, we can move on to my real journey to health and how my goal is to lose 32 lbs.

Keep truckin away!

The Beginning

I was never a skinny little kid and for the most part that didn't bother me.  I wasn't overweight either, but I definitely was curvy compared to my friends who were thin as sticks.  I was never told by old ladies that they needed to "put some meat on those bones" but rather they needed to "keep those curves in place."  As a little kid, my curves never even crossed my mind.  In Junior High, when girls start to change, my already curvy toosh got curvier, my thighs got bigger, and my waist seemed to get a little smaller giving me a shape I was proud of.  What I wasn't proud of was my little bit of tummy.  I was very physically fit and doing Karate 2-4 times a week, but that little poof made me feel like all my curves were ugly and unattractive- especially when my all of my friends were tall, very, very thin, volleyball and soccer players.  They could all share clothes and I couldn't.  These insecurities got worse in high school as I started to put on a little weight.  I was still fit and well within "average" but I started to get headaches, I was having a harder time keeping weight off, and I was exhausted much of the time.  High school was not easy on me socially and when boys weren't interested in me, I immediately blamed my body, not my social standing within the class.

Things got to their worst in my junior and senior year of high school.  My weight was the highest it had been and due to stress, headaches, and a very high level of physical activity, my periods stopped. Completely.  I figured it was due to everything that was going on in my life.  When I graduated, I literally skipped out of the gymnasium.  That summer, after graduating and getting my black belt in karate, I thought everything would return to normal.  No more stress, no more karate.  But things didn't.  I kept getting heavier and heavier and more and more exhausted.  That August of 2010, I went to the doctor for a hormone panel and they recommended I get a brain MRI.  Worried, I conceded and the first Friday of my college career, I was called and informed I had a benign brain tumor on the pituitary called a Prolactinoma.  The next two months were a blur of me being the sickest I had ever been in my life and setting up a treatment plan.  Going to the grocery store was exhausting, driving to campus and taking my 2 classes took everything I had.  I dropped down to 2 classes from my initial 6 and I still could barely keep up.  I spent most days curled up on my carpet with a pillow and my books.  Eventually I was put on medication and month by month, started to feel a little better.

Time went on and in 2012 I decided to move to Los Angeles to be with the man I love.  That story is for another blog post when I'm feeling super romantic but for now let's just say it was the best decision I ever made to quit school and move down here.  I had started to get more fit up in Idaho as I was getting healthier hormonally and as the tumor was shrinking but all my hard work went away when I moved here.  There is so much food at such cheap prices that is so delicious my weight shot up.  And has continued to shoot up.  When I was at my sickest I weighed 142.  At my 5'5" height I wasn't happy with the way I looked.  When I got down to my pre-tumor size I was back to 132.  I still had my curves but I was healthy.  I moved when I weighed 132 and in the last two years I am officially at my highest weight of my life at 164.  I am embarrassed, my clothes don't fit, I am extremely self conscious, I don't feel sexy and thus my intimacy has plummeted with my boyfriend.  Everything about my life right now is low.  I don't exercise, I eat poorly, I don't sleep enough, and I just feel yucky.  So this week my mom bought me a pedometer and I bought myself an exercise mat and some workout clothes to go sweat in.  I know I don't walk or move enough and I firmly believe the pedometer will motivate me to move more every single day.

So this is the beginning.  The beginning of my new journey.  The last 4 years of my life have been about trying to shrink my tumor (which it slowly is going away).  The rest of my life starts now.  I will no longer neglect the other parts of my health.  It is time to get back in control.