Monday, May 27, 2013

I Am Back

Hello, there.  I’m back.  How are you?

Things have been busy here in the land of Sweet Tea.  As I said in my last post, there were some things going on that were simply taking every bit of my energy and focus.  Things have settled down some now.  Actually, they’ve been somewhat settled for a while now. 

I’ve just been struggling with how to come back to blogging; what to tell you, how much to share, etc.  You see, to tell you the whole story will involve getting really personal for me, more than I have before.  I wasn’t sure about doing that.  I really thought about posting something along the lines of “had a health scare, it’s mostly okay now, so glad to be back”.  And that is the truth, of sorts.  It’s just not the complete truth.

You see, the complete truth has been building for over a decade.  I just didn’t know it.  So, after a very long internal struggle, I have decided to tell you the whole, complete story.  I wish someone else had some time over the past twelve years or so, because I might not be writing this if I knew then what I know now.

I apologize in advance if some of what I’m sharing crosses the line for any of you.  Like I said, I really struggled with this post (I’ve been drafting it in my head for weeks now), but I feel that the need to know outweighs the need to keep it clean and pretty. 

I was diagnosed with hepatic adenomas last month.  For those of you who are as blissfully ignorant as I was two months ago, they are benign liver tumors.  I have nine of them.  You can read more about them here or here if you’re so inclined.  A Google search will also yield some interesting reading.   I’m sure at this point, you’re saying, “Oh, they’re benign, what’s the big deal?” 

There are a lot of things that make them a big deal, so here goes:

First and foremost (and the part that makes me really angry, and feel like I need to share my experience) is the fact that they were almost certainly caused by years of taking oral contraceptives (birth control pills) and I was NEVER informed that this was a risk. 

I began taking birth control pills right around my 18th birthday.  I wasn’t using them for birth control at that time.  During the ten plus years I took them, they were for birth control for roughly two and a half years.  I initially went on them to control very heavy menstrual bleeding, and they worked reasonably well.  I would be given a prescription that would work for a while, and then the bleeding would get really bad again and they’d change my prescription, usually to a higher dose of estrogen. 

I saw four different gynecologists during this time, and they all took a similar approach.  None of them looked into the cause of the bleeding much, or suggested any alternative remedies.  I read all of the inserts that came with the pills and mentioned the risks: increased risk of breast cancer, blood clots, stroke, etc, and talked about these risks being increased for women who smoked, had high blood pressure, or were over 35.  I didn’t have any of those risk factors:  I’m a non-smoker, I don’t have a family history of breast cancer, and my blood pressure tends to run a little low.  Even an imminent needle stick doesn’t get me more than a point or two over what they tell me is ideal.  I thought things were good.  I kept up with my yearly appointments, I read all of the inserts that came with the medications, and the doctors kept prescribing them. 

Then things changed; the bleeding became worse than it had ever been earlier this year, to the point that I had to leave work a few times because of it.  I got an appointment with the gynecologist who finally decided to do an ultrasound.  At that time it was determined that the high estrogen content in the pills (they had continually upped the dosage over the years) was actually contributing to the problem, and I was put on a totally different group of hormones.  Once again, I thought everything was good.

I had been to my regular doctor in the midst of all of this for a lingering cough, and I mentioned to him about the bleeding, and that I had an appointment set up with the gynecologist.  He said that if the gynecologist didn’t do blood work he wanted me to come back to his office to have some done to check for anemia, thyroid issues, etc. 

The gynecologist never mentioned blood work, just sent me on my way with a new prescription, so I went back to the family doctor for a blood draw.  I didn’t think much about it after they drew the blood.  My numbers have always been good.  I once had mildly elevated liver enzymes, but the doctor I was seeing at the time attributed that to my being heavy and having had my gallbladder removed. 

So I was a little surprised when my doctor’s office called and said that I had elevated enzymes, and that they wanted to send me for an abdominal ultrasound. 

I went for the ultrasound and was told there was something there that they needed a clearer picture of, so was then sent for a CT Scan.  The CT Scan revealed that there was definitely something there, but they still couldn’t tell what.  The next step was an MRI.  The MRI revealed nine masses of some sort, but they still couldn’t tell what.

I was then scheduled for a liver biopsy.  I had to wait a little over a week for the biopsy, and then another week for the results, and I can tell you that was not a fun time at all.  There are so many possibilities and what-ifs that start to swirl around in your head. 

I have been seeing an acupuncturist for two years now for allergy problems.  It has helped a lot.  I used to have about five or six sinus infections a year and now am down to maybe one or two per year.  I told her about everything that was going on during all of the testing.  She was actually the first medical professional to make the connection between the liver issues and the hormonal issues.

After talking with her I stopped taking the hormones three days after the biopsy.  Five days later the doctor’s office called with the results and told me to stop taking the hormones. 

My husband and I met with the doctor and we’re currently taking a wait and see approach.  Hepatic adenomas are relatively rare, and from what the doctor says and from what I’ve read there isn’t a specific, agreed upon course of treatment.  They typically recommend surgical removal if they’re causing pain or if they’re bigger than 5 centimeters.  The biggest risk is that they rupture and cause internal bleeding. 

Mine aren’t causing me pain, but the largest one is 5.6 centimeters, the second one is 5 centimeters.  And I really, really don’t want to have surgery.  The surgery is major, the recovery is long, and at this point I have very little faith and confidence in the medical profession.  I can’t help wondering what issues the surgery may create ten years down the road. 

There are mixed results as to what discontinuing the hormones does for them, but there’s at least a chance they will shrink.  So that is what we’re hoping for.  I will go back for another MRI in October to see what is going on with them. 

In the meantime I have stopped taking the hormones, have stopped eating tofu, and am trying to cut out all soy products.  (I had no idea how many food products have soy!  But that’s another post for another time.)  I am also trying to lose weight.  I need to lose weight anyway, and if I do end up having abdominal surgery I am sure I will be better off not carrying a lot of excess weight in that area. 

My doctor has told me to mostly use common sense: no contact sports or anything like that, which is a non-issue for me.  I also have to go get checked out if there’s any trauma to my right side (car accident, etc).  I can’t take any blood thinners, and need to eliminate, or limit as much as possible anything that puts a strain on my liver.  I finally kicked my soda habit (which took off twenty pounds), and no longer have the occasional drink. 

I hate having this hanging over me, but it’s a lot better than what was going through my head while waiting for the biopsy and results.  It has also made me a lot more concerned with getting myself as healthy as possible and making better choices, which has to be a good thing regardless of what happens with the adenomas.  So in the meantime, I will continue to educate myself as much as possible and hope for some shrinkage in October.

So how are all of you?  I hope things have been well.  I’m really looking forward to catching back up on everyone’s blogs.