9.22.2009

The Dutch aren't stupid and I don't hate them.

Except the guy who almost ran me over with his car. Him, I still hate.

It has been a week of exhaustion, anger and hopelessness, as month's worth of paying lip-service to patience and optimism came to an end. And it became abundantly clear that I had been keeping my head in the sand, perfectly happy to let others tell me what to do and where to go when. Results like I had at the neurologist appointment last week were inevitable -- sooner or later the ball was going to drop because I wasn't making any effort to ensure it stayed up.

A fruit basket goes to that neurologist though, because he kept his word and followed up on my case, writing all my doctors a fairly scathing letter, and forwarding my case to a top neurosurgeon in the Netherlands. He even called me back to tell me about it. The neurosurgeon's office called me last Friday with an appointment to see an endocrinologist at the hospital they all work in today. I was frustrated because I thought I was starting all over again, but optimistic because I confirmed that all my files had been sent and received BEFORE going. And they all had. This is progress.

Today was the appointment and here is what I know:
- the tumor is attached to the pituitary gland
- the tumor is so small that operating is high-risk because chances are very high that part of the pituitary gland will be taken off in the surgery
- the tumor is benign
- the medication I was on before may have been reducing the amount of prolactin in my system, but the blood tests that I had been given don't measure exact amounts of that hormone. A >47 shows up if the level is greater than 47, so even if my level had gone from 193 to 48, it would have shown up as no change
- the lab in the hospital measures exact amounts of prolactin in the blood, so I will have a real baseline
- I have been given new medication that is stronger than what I was on before and will have blood taken again in five weeks
- If this medication works, I will have to take it forever
- No matter what, I need to lower my prolactin levels
- In seven weeks I meet with the endocrinologists again as well as the neurosurgeon if needed

So I now have a plan and a time line. Tom, upon listening to everything the doctor said, looked at me and said, "OK. Surgery is off the table." I tend to agree, and am hopeful that this medication will work and cut this tumor off.

I received so many messages of love and support from my friends which were just amazing. Special love returned to my Dutch friends who put up with my disparaging their entire culture and to the four who are equally funny, patient and fierce.

3 comments:

LeeAnne said...

Phew! I am so glad they got their FREAKING act together. And that the tumor is small and benign. Good stuff!

Anonymous said...

All very good news. Especially the "benign" and "no surgery" parts. Yay! Skype me when you get a chance.

monique verrier said...

katie,

breathing a sigh of relief for you and glad there is a treatment protocol that you and tom are feelin' okay about. sending healing love your way... xo.
monique