Everyone Has a Story

I am writing this blog entry from St. Mary's Hospital which is part of the Mayo Clinic.  I know that I have been really bad about checking in with everyone, and this seems like a real doosey to pick up with! 

I am here with my brother, Todd.  He is in right now having a procededure (they never call it a surgery, but that is sure what it sounds like!)  We got here Monday night, and had consultations yesterday.  We spent a lot of time walking around the Mayo area here in Rochester.  If you haven't been here before, it is like it's own little city.  All of the different buildings and hotels are bustling with people, which I assume are here for some sort of medical reason.  There are also a lot of people in either scrubs, or suits, all with the familiar white Mayo name tag. 

Everyone has a story.  Every where there were people carrying papers that told them where their next appointments were.  Some times I would wonder which one in the group would be the one to get poked and prodded and scanned.  Sometimes it would be easy to tell because someone would have a bandage on their arm where there had been a blood draw. 

Everyone has a story.  Why are they there?  Is this their day to get a diagnosis?  Is this the day before a major procedure?  Is this the day that they were told that there wasn't anything else that could be done for them or a loved one?  My mind really wandered.  Some people were quite elderly, and I wondered why they hadn't brought any kids or grand kids to help them.  Some were kids.  Some had  masks.  Some had no hair. There were people of all shapes, sizes, economic status, colors and religious beliefs.

Everyone has a story.

My brother has a story. For several years now, he has complained about muscle weakness in his legs, fatigue and some balance issues.  He came to Mayo 4 years ago when the doctor's in Des Moines thought that he had the beginning of MS.  After a week here, they decided that wasn't it.  He has had some back surgery in the past and they thought it might be scar tissue.  He was starting to wonder if it was in his head!  He went for a second opinion in Iowa City and between there and Des Moines, 2 years ago they thought he had Lyme's Disease.  (I don't remember which place decided that.) Well, they decided against that.  There was mention of Cushing's Disease. 

In March, his doctor in Des Moines sent him up here to Mayo for a weeks worth of testing.  My cousin, Julie, came with him, and they decided that he did indeed have Cushing's Disease. He has a mild form of it.  He noticed that his weigh never changed but his stomach was getting larger, but his legs were getting skinnier.  (With Cushing's it redistributes his weight.) They have also noticed that he was getting a "moon face".....a round face. 

I am sure that none of you have heard of Cushing's before.  Here is what it is, as far as I'm understanding and I feel like I've heard this information a lot in the last couple of days.  There is a tumor somewhere in the body that is releasing too much of a hormone (Cortisol).  His body is compensating for that hormone and it takes away from some other functions in your body.  Like...his balance and his fatigue. Most of these nodules, or tumors, are in the pituitary gland (his brain) or in his lungs.  MRI's and PET scans show nothing in his lungs, but a 5mm tumor in his pituitary gland. (Let me say it again...his brain!) They are about 99% sure that the extra hormone is coming from that tumor, but there is a higher rate of "hidden tumors" in men.  Some good news yesterday was that they are almost certain that there is no cancer.  (Only 16 cancerous tumors in the last 4,000 cases.  They also don't think it looked cancerous from his MRIs)

So, before they do any surgery, they want to  make sure that the hormone is definitely coming from the pituitary gland.  So, as we speak, he is having a Petrosal Sinus Sampling.  They are going into veins in each leg and going up to his pituitary gland (remember...his BRAIN!) and are taking samples from around the tumor to make sure that the extra hormone is coming from there.

Frankly, we are hoping that it is, because then we can move ahead with surgery in the next few weeks.  If it isn't we are back to square one.  If it is, he will come back here and they will remove that tumor through a surgery that goes through is nose.  It should take care of it. 

They have said that another hard part is getting his body used to the different hormone level since he has had such high levels, and then they will crash.  It is a balancing act to get it under control.

So, I am waiting for them to bring him back to me and then we'll head back to my place tonight and he an go back to Grinnell tomorrow.  After 4 years, I am happy that things seem to be getting under control and we are getting to the bottom of things.  I hope and pray that the hormone is coming from there so he can get on with things. 

That's his story.  I am wondering if his hormones go up and down if he'll be like a menopausal woman?!  This could create a whole new story!

Thanks for all of your thoughts and prayers.  And thanks for putting up with this really long post.

Love,  Heidi