Wednesday, April 24, 2013

Surgery Update! Woo Hoo!

Have you ever been excited about surgery?

Probably not.  But you know what?  I am!  I'm so ready to have this all over maybe.  Ok well the surgery isn't going to make everything perfect-I'm getting ahead of myself again....

So last we left our intrepid passenger (this would be me) I had a mass on the left adrenal, trying to get referrals for surgeons, additional tests etc.  After a day of serious merry-go-rounding, I finally happened upon the best surgeon for the job.  The downside?  He doesn't take insurance for his surgical fees-umm Houston we have a problem.  But the next best guy couldn't even see me for a consult for 6-8 weeks possibly.  Also a problem.  Apparently while adrenal removal isn't a complicated surgery it also isn't a common surgery.  The guy doing mine has done around 50, the #2 guy in the business had done 2, right 2.  Yikes!

So consultation went great yesterday and I really liked the surgeon ($$) and his staff.  Amazingly they were able to get me in at Northside Main for surgery next Wednesday morning the 1st.  I guess this is what happens when you are a hot shot, non-insurance taking surgeon?  The best thing about this is that Mom and Dad are going to already be in town on a planned trip to visit next week so I will have some help with everything.  Not that Leslie isn't a great helper, he is.  But this way he can focus on work and they can help me with anything I need.

Actual surgery isn't too bad, hopefully just one night in the hospital, some restrictions on activity for awhile but the key is the removal of the adrenal and how my body responds.   The surgeon explained it really well yesterday. He said...You have two adrenal glands, right above your kidneys.  Right now the one with the tumor is working 4x as hard as it should.  Pumping hormones to the pituitary gland in my brain.  My poor pituitary gland is saying "Stop please, don't send any more of this junk to me!" so in the meantime my healthy adrenal says-"Oh ok, I'll stop, sorry about that" while the left adrenal with the tumor (I should name it) keeps pumping away.  So once they remove the unhealthy adrenal it takes awhile for the sleepy one to wake up and do it's normal job.  (Like maybe 6-8 months, or more.)  During this time you need some drug therapy and replacement hormones and steroids to sort of get everything back in balance.

So there you have it!  Much much to get done in the next week to get ready, including pre-op today! (Yippee more needles!)  But really it is all ok and I'm so ready, well except for the actual getting ready to be down for the count for a little bit.  

So in closing, thanks for all the prayers and well wishes.  Also a note...please, please, PLEASE don't come to the hospital.  It's a pain in the neck down there, I really don't want to see anyone and I'd rather wait til I was home and feeling more like myself.  PLEASE, if you have family members who like to visit people in the hospital (you know who you are) please convince them to just wait til I am feeling more like myself at home.  Mom will report on me and I'll report in when I am feeling better and down one body part!     

Tuesday, April 16, 2013

"It's not a tuuuumor"-oh wait, maybe it is!

So I've been composing this post in my mind for a couple of weeks now and still can't figure out how to say exactly what I need to.

You know how in the move Kindergarten Cop when Arnold says he has a headache and the little kid says..."maybe it's a tumor?"  And Arnold (in his best Arnold voice) replies "It's not a tuuumor."

Well guess what-sometimes it IS a tumor.  But sometimes a tumor can be a good thing!  I think I need to back up, or start over or something.

Let's start at the very beginning (a very good place to start)-flat out I've just not been well.  If you see me on a regular basis or more likely if you have seen me recently but haven't seen me in awhile you will notice right away that something is going on.  I've put on a lot of weight, have a ruddish complexion and just overall my whole look and body has changed drastically in about 2-3 years.  I've had a host of other randomly odd symptoms and been to a few doctors sporadically during this time to try to figure out what might be going on.  I was really starting to get depressed because I'm a pretty active person, I'm NOT lazy and I don't eat badly.  I do like to cook but we eat most of our meals at home and I avoid most processed foods.  Simple things were starting to get hard like getting up from a chair, I was losing my hair, crazy baffling stuff.  My OBGYN thought I was going through early Menopause.  The GI doctor thought I may or may not have IBS.  The list goes on.

The GI doctor was astounded at my high blood pressure.  It was averaging 160/120.  My heart rate stayed around 120 most all of the time.  He sent me back to a primary care doctor who after a month of trying to get my BP down with no luck sent me to a cardiologist.  Thank goodness for a wonderful all-knowing cardiologist.  After determining I didn't have any heart related problems or abnormalities he went the extra mile on some blood work to try to determine the cause of the sky high BP.  He found an abnormally high level of something called Cortisol and suggested I might have something called Cushing Syndrome.

After looking up this and reading the signs and symptoms I was astounded at how much they matched exactly every single thing that had slowly been going wrong with my body.  The cardiologist referred me to an endocrinologist who started tests about 2+ weeks ago.  All the tests were starting to come back for very very high levels of cortisol, also leading to a possible Cushing's diagnosis.  But apparently one of the main tests that shows where the cortisol is coming from (usually your pituitary gland) came back negative.  Luckily she went ahead and ordered a CT scan of my abdomen last week to check for an Adrenal Mass (also a primary cause of Cushings).  

After just returning today from the doctor I have confirmation of a 2.5 cm soft tissue mass on my left adrenal gland.  It was an odd moment to rejoice that they found a tumor in my body.  A probably benign tumor that hopefully they can remove as soon as possible and I can start healing.  I'm still waiting on specifics of the surgery but it looks fairly non-invasive and after 3-6 months of drug therapy I should be on my way to feeling MUCH better.

I'm still not even sure what all this means but in the short term I can tell you a couple things. 

-It's an amazing relief to know something is actually wrong with me and it's not just in my head.  

-I think I'm going to take a break from the garden this year.  This actually makes me pretty sad but it's so much work and I just don't have the energy and I'm not sure how I will feel after surgery.  I thinking of subscribing to a local organic produce delivery service for the Spring and Summer instead.

-I appreciate all the thoughts and prayers from everyone for the last couple months as they have been working so hard to try and get the proper diagnosis for me.  I've been praying for almost a week that they please find something conclusive that will make me well and it looks like they finally have!

So when I know more I will update but this was the easiest way to let everyone know what was going on at once.