No kidding =/
Benign with Benefits
Words Have Meanings
Words have meanings. Many times people will use a word incorrectly - sometimes so incorrectly the idea they express is the literal opposite of the actual meaning of the word. Other times, though, people use a word correctly, but the common usage and even the definition are insufficient to actually describe the subject. From Wiktionary:
benign (comparative benigner or more benign, superlative benignest or most benign):
- Kind; gentle; mild.
- (medicine) Not posing any serious threat to health; not particularly aggressive or recurrent.
We’re interested in the second definition of ‘benign’. I’ll give them the second part of it - benign tumors aren’t particularly aggressive in growth or in recurrence. On the other hand I have to call bullshit on “not posing any serious threat to health”. I think what they meant there, and what so many people mean is, “unlikely to kill you in the near term”.
Asking the Right Questions
After years of going to various doctors, having weight loss surgery, talking to therapists and trying various medications to help me focus, to give me more energy, to make me happy, I was at my wits end. I was at the point where I was just going to say yes to all the medicine they wanted to give me for problems I didn’t I had. My ‘hail mary’ pass was to get as many things as could be easily tested for that kind of fit my symptoms together, find a primary care doctor in my area, write them a 2 page essay introducing myself and describing what was wrong with me, and hope they would run the tests I asked for. Thankfully, the doctor was either convinced or amused enough by the fact I took the time to write an essay about what I felt was wrong with me that he ordered 10 of the 11 blood tests I asked for. He would end up running the 11th the next time he saw me.
Humor (often inappropriate) is the only way I know how to deal with things, which I think is why I’m able to talk about this as comfortably as I am. This is good, because a lot of people aren’t able to and someone should speak up for them. If more people knew about these things, fewer people would end up like I did. That image is a scan of one section of my blood work results. Free Testosterone for someone my age (30) should be in the neighborhood of 400–600 nanograms per deciliter. Mine was 54.96 - so a bit low, yeah. In addition to explaining why I had lost any physical interest in others, it turns out low testosterone also explains a lot of the ‘physical’ issues I’d been having - low testosterone reduces drive and ambition, it can cause anxiety issues, and having a healthy testosterone level is good for your health in many ways - but because it is related to our naughty bits (sadly NSFW probably), nobody wants to talk about it, and so people are that much more likely to ask their doctor about it.
So, once I found that out - and I had suspected it going in so I had already become a Wikipedia M.D. on the subject - I asked what the course of action was, expecting my doctor to come back at me with a prescription for some kind of supplement or replacement therapy, but instead he ordered an MRI. I was furious - I finally had an answer, and I wanted to fix it now, dammit. Thankfully the education my doctor received was significantly better than the one I got from Wikipedia, because he knew one underlying cause of Low Testosterone could be a pituitary tumor. When the place they scheduled me for said it’d be two weeks before I could get the MRI, I found a different place that could get me in that Friday and was still covered under my insurance.
I went for the MRI that Friday. I found it oddly comfortable actually, and somewhat relaxing since the MRI had a nice rhythm to it and I couldn’t be on my phone or tablet. I think I might have nodded off once or twice for just a moment. After they were done, they had me wait in the reception area while they burned my results to a CD. They wouldn’t tell me what their interpretation of the results was, they said I had to wait until Monday when I saw the endocrinologist. Being the impatient nerd that I am, and having the disc in my hand, I went about extracting all of the images, removing any PII, and posting them on reddit. Thankfully they are better radiologists than they are detectives, and they were able to interpret what I saw.
That huge, off-color thing with the smiley face is what they call a ‘pituitary macroadenoma with right cavernous invasion’. That means it grew from my pituitary gland (the “master gland”) and instead of pushing against my optic chiasm and potentially blinding me or causing a bleed, it grew down into one of my sinuses.
Hopkins Is Not a Rabbit
After talking to a local endocrinologist and my doctor, I decided to take the reigns and send all of my case information to Johns Hopkins, an hour by car that I felt was worth traveling to be evaluated by one of the best neurology programs in the world. I emailed them all my case information that Tuesday morning and by Tuesday afternoon I had a appointment with a neurologist, neuroophthalmologist and neuroendocrinologist. Here a neuro, there a neuro, everywhere a neuro neuro. When I got there Thursday they drew blood, and then I went about my appointments talking about potential courses of action if it required surgery, as well as possible medical treatments if it was the right kind of tumor.
It was getting towards the end of the day and I was meeting with the ophthalmology resident when I got a call from the endocrinologist I had seen earlier in the day. My prolactin level was 4000, and that meant it was a prolactinoma and was “probably” medically treatable (in other words, I take a pill for a while, it kills the tumor!). They would call in a prescription for cabergoline and I would take a 0.5 milligram pill every three days, and it would eventually relieve most of my symptoms, reduce my prolactin level, and someday even kill the tumor off entirely. I was so excited that I might not need surgery I didn’t mind having no idea what prolactin was. Once I got home and the excitement wore off a bit, I started brushing up that Wikipedia M.D. and learning about prolactin.
Prolactin is a hormone that occurs in both males and females. While it apparently has dozens if not hundreds of functions, the one it is best known for is stimulating the mammary glands to produce milk. During pregnancy a woman’s prolactin level may rise to as much as 400. Mine, you’ll recall, was 4000. Fortunately, unlike some unfortunate men with similar conditions, I did not get leaky, or any symptoms along those lines. In fact, I had virtually no symptoms that couldn’t be explained away by one more common condition or another. Perhaps if I had, someone would have found this years ago. Current estimates have this thing as having been in my head for a 8–10 years, if not longer. Crazy.
One of the other effects of prolactin is that it suppresses sex hormones - both estrogen and testosterone. So the hope is that, once my prolactin level reaches normal 3–6 months from the start of treatment, my testosterone may begin to recover. That in combination with the reduced prolactin level will make it easier to lose weight, to build muscle. It will cause changes in mood and demeanor - my ambition may come back, my concentration might improve, etc. I will also in some respects experience a kind of second puberty - because hey the first one was so awesome! - and things I had written off as things I would never have might again seem possible.
Time Flies When You’re Killing Tumor Cells
I actually first received the news about the tumor at the end of May 2013. I meant to write this article a few days after but I just never made the time. Hopefully the fact I am making the time now is a positive sign for the future. This past Monday was 30 days since I started the cabergoline, and I had blood work done to check my prolactin and testosterone levels again. My prolactin level, which was 3700 at my Doctors, and 4000 when I went to Hopkins, was down to 370 in just 30 days. This is a hugely positive sign. My testosterone level is unchanged, but it is important to remember that 370 is still between 26 and 74 times the normal amount, which means it is still heavily suppressing normal hormone function. I’m eager, though, to see what the next 90% reduction will bring - and I am hopeful that in a month, we might find out.
If there are lessons to be learned in this story, I’d like to think that they are:
- Trust your instincts when you know something is wrong. Be relentless, even if it takes years.
- Be honest with your doctor. Ask uncomfortable questions. If you have to, write it down and hand it to them on a piece of paper. Don’t let timidity get in the way of living your life. Besides, your doctor has seen weirder things than whatever you have going on.
- Just because something is benign, doesn’t mean it won’t leave it’s mark.
This started as, and still will be in many ways, a weight loss blog. I hope that my next adventure in weight loss will be much more successful since I will have dealt with much of the underlying hormonal issues that could have been preventing the weight loss I worked so hard for. I’ve developed the good habits, and I know what I need to do - I just need my body to catch up with my mind.
The past few weeks have been really tough for me, due to some really stressful times at work. I saw my weight loss slow down, stop, and then creep up a couple pounds just because I was eating the wrong things at the wrong time and when I got home at 9 or 10PM, I didn’t want to make anything so I’d order out. I got away from Calorie Counting. It was only a matter of a couple weeks, and a few pounds, but at then something happened that made me step back and noticed what was going on and had to stop it.
Moms are good people. You don’t always get along with them, but they almost always have your best interest at heart. My mom sent me this image that I hadn’t ever seen before via email on one of my stressful days, and it almost made me break down. She must have taken it when I wasn’t looking, because I never used to let people take pictures of me. I was always so afraid someone would see them who didn’t know just how overweight I was, and would hate me or something. Anyway, here is the picture:
That was January 2010, somewhere between 560 and 600 pounds. I had just bought my bike, and was hoping I would ride it but wasn’t sure I would or could. It was probably the best decision I made for my health other than talking to Dr. Neff. The first time I rode that bike, it took me like 15 minutes to go 2 blocks. The last time I rode a bike (winter sucks) I did 5 miles in an hour. I can’t wait until I can bring my bike to Alexandria and try out the trails this spring.
Anyway, this is me now, down about 200lbs:
I still have a ways to go, but its really important to step back once in a while and remember how far I’ve come. I’ll try to update this more often than I have been, its been a whirlwind three months of moving to the DC area and taking a new job and then taking on more responsibilities at that job.
Its been a while since I posted here, but I’ll be back up to posting regularly soon because I’ll be posting about cooking my own meals. Since I started this blog, everything you’ve seen cooked has been cooked by my parents, because I’ve lived at home in their basement the whole time I’ve blogged here (and since I moved back in Fall 2003 from my failed first attempt at getting a degree).
I wasn’t really ashamed of living in the basement - I know its a nerd stereotype, but it was a pretty nice basement. The two floods were pretty frustrating, but overall it wasn’t a bad experience. But you can’t actually have a life living in your parents basement. Eventually you have to get out on your own again, and so I am.
I recently accepted a position as an IT Manager at a defense contractor in Arlington, VA just outside of DC. I’ll be living on the 14th floor of an apartment building in Alexandria, with a big window facing north towards DC. I’ll be living alone for the first time in my life, and it wouldn’t have happened if not for #publichumiliationdiet, #tweetyourweight and the people who have read this blog.
I wouldn’t even have considered this sort of change 143 pounds ago in May when I started to try to lose weight. I probably wouldn’t even have considered it 70 pounds ago when I had my vertical sleeve surgery. I’m not usually a big fan of change but taking this chance just feels right. So I’m going to live on my own, and learn to cook my own meals (I hope!) and learn what its like to live without the huge safety net that is my wonderful, amazing family.
I’m terrified, but I’m also incredibly excited.
The past few birthdays have been unhappy ones for me. They just felt like another reminder of how fast my life was ticking away. Fat, lonely and with no ambition, time was my enemy. I was so afraid of moving towards the end of my life, which in retrospect made no sense since I didn’t have much of a life to miss in the first place. My life was a series of things I did between fast food meals, and I didn’t like being reminded of how much time had passed.
This birthday was different though. My birthday was about two weeks ago - and even though I didn’t really do much to celebrate it, other than dinner with my family, it was the first birthday in a long time that I enjoyed. It felt good knowing that this is the first birthday in a long time that I knew I would weigh less the next one. That I knew my life would be in a better place next birthday than it is this one. The first time that I felt like I was actually making some progress, and not just desperately trying to maintain my miserable status quo.
Birthdays mean a lot more when your life is not a series of things you do to fill the time between runs to Taco Bell and Wendy’s. I try to think about where I’ll be at next birthday - how much I’ll weigh, where I’ll be living, what I’ll be doing. And for the first time in a long time, I don’t really know. I know what I’d like to be doing, but even if those things haven’t yet come to pass next birthday, I know at the very least, it won’t be exactly the same as the five or six birthdays before it, and that makes me happy.
People want updates, and so update I shall.
It is now a little over 3 weeks since my surgery. I’m down 37 pounds since the surgery, and 110 pounds overall sine May 26th, 2010. Things are going great. I’ll be back to work full time next week, or at least that is my plan. My energy levels aren’t too bad anymore. I’ve had to add a notch to my belt to keep my pants from falling down. Twice. Everything is getting better. I’ve been riding my bike again, and I hope to return to the gym October 1st. I have no doubt that this is the best decision I’ve ever made.
I want to thank everyone who helped - all the doctors I had to see, Val my nutritionist, Dr. Neff my surgeon, and everyone at his office and at the hospital who helped me. I also want to thank my family for being so supportive during all of this.
I have a lot left to go through though, from actually losing this weight and making sure I stay on the right course and making sure I meet my nutritional needs to eventually getting cosmetic surgery to fix things. But I think I’m past the hardest part now, and everything will finally get a little easier, if not easy.
I’ll be posting an update video sometime in the next couple weeks. It should be cool if it works out like I want.
Haven’t been posting my meals lately if only because they are mostly protein shakes. Last night I tried pureed chicken/broccoli and I’m not sure it was meant to be. I love the shakes though. 2 scoops extreme chocolate milk protein powder (48g protein total), 8 ounces of water, 4 ounces 1% milk, 1 banana, 1 tablespoon peanut butter all blended. Its delicious.