My hospital stay

My hospital stay was okay. Nurses over all were pretty cool, Doctors however were hit and miss. Since OHSU is a teaching hospital seemed like there were people popping in and out all the time and because of the fluid leak, my blood had to be drawn every four hours. I'm bruised from hands to elbows.

Sunday morning interns didn't arrive to remove the drain and nasal packing until the afternoon nurse demanded action. It took less then ten minutes to remove both and immediately my headache lessened. However since it was too late by that time to be released. Grrr.

Then one of the endocrine doctors popping in to say that I might have to go on medication. Confused because I'd been told medication wouldn't work for my type of tumor I questioned that. The guy stalked over to the computer where they'd been entering my vital signs and brought my record. There was a old report from 2007 that said last time my tumor tissue tested positive for prolactin.

What?

I started to explain what Dr. Delashaw had told us. The man interrupted, "if you’ll let me speak". Startled by his rudeness I fell silent. He made a few remarks on how medication works on prolactinomas then left. A good thing because though I was still on a lot of pain medication and weak from surgery my sweet, even tempered husband was only seconds from tossing him out.

An hour later my endocrinologist came in, said about the same thing and we just stared at her wondering if somehow we'd misunderstood in January. I decided then to ask about one of my hormones that was low 'normal' and she gave me a lecture on how giving medication when someone was ‘normal’ would lead to other problems. This was a complete 180 from her attitude during my pre surgery appointment when she assured us everyone’s normal was different, her focus wouldn't be on numbers but making me feel well. To my utter embarrassment, I started to cry and luckily she left.

Chris comforted me and after a couple moments I regained composure. We set aside our confusion, deliberately focusing on my recovery. We'll demand clarification on my follow up visit when I'm stronger.

home from hospital and doing well

Dr. Delashaw believes he got most of my tumor. Won’t know how much remains until the follow up MRI in May.

I had a cerebral spinal fluid leak, a complication that kept me in hospital a couple days longer. A drain was placed at bottom of my spine to drain off spinal fluid to keep pressure off the leak until it repaired itself. Three days of sitting up in bed only allowed to move if nurse assisted sucked. Horrific headaches that increased dramatically after any movement, so for three days I remained mostly still. Sunday afternoon they finally removed the drain and nasal packing. It felt amazing to move, lay down and breath through my nose.

Last Monday afternoon I came home. I'm doing okay. As expected I'm sleepy, tired and have throbbing headaches that haunt me but every day is better than the one before.

Have appointment Friday, the start of several endocrinology appointments to see how my pituitary is functioning.

hormone levels

My hormone test results came back within normal range, some on the low side of the scale but nothing is bad enough to medicate. They'll be checked again right after surgery then again in 3 months, another 3 months and so on.

This confirms it's a non-functioning tumor. At its current size, if it was any other kind of tumor at least one of my hormone levels would be elevated.

With these specialist I feel confident that this time I'll be able to properly manage this. I'll be healthy again. I’ll be monitored by professionals that will know when the tumor grows again.

I'm hoping by the time I have to have surgery yet again one of my brilliant sons who are interested in engineering (bio tech) will develop a better solution like tiny robots injected into the blood stream, swim to the tumor and kill it. Sounds like science fiction doesn't it but it’s currently being worked on. As long as they don’t travel in a yellow submarine. :)

Surgery’s Thursday. Don’t know time yet; have to call the day before to get that. Chris'll be at hospital with me. Mom'll be there part of the time. Last time she waited with the boys at my home and rearranged my entire house including the garage trying to keep busy. This time Jason will be with his brothers at our home, easier on the boys to continue normal routine than wait for hours at the hospital with not much to distract them – last time my surgery was over five hours long :(