Back from Seattle with updates!!

Phew! Short trip, but very informative. I'll do a recap day by day...

Sunday: Left for the airport at 9:30am. Kids came with hubby and I. Thankfully no one really got upset. We all knew this would be a short trip, so it was ok. I was nervous tho. I hate flying. Just wanting to make sure I get there and back safely. Thankfully I did. The ride out was very nice. No turbulence or other disturbances. I ate lunch on the plane (and after not eating breakfast, I was hungry!). I get nervous beforehand, so I didn't want to puke.

Got in right at 3pm PST and my friend was there to pick me up! It was so nice to have someone there to spend time with and not have to go back to the hotel alone. So we went to the hotel to drop off my stuff and then headed back out to dinner. After dinner we went downtown Seattle by the Puget Sound and it was really nice. It was such a beautiful day!! I got to see the Space Needle up close and everything. I felt like I'd come full circle too because where we were downtown was where I went when I first went to Seattle for a work conference 12 yrs ago!! Ironic eh?!?!

I wasn't able to stay out too late, cuz I was tired. That 3 hr difference is huge! So around 7pm we went back to the hotel and I went up to bed. I tossed and turned a lot tho. I think I was nervous and overwhelmed. It was also weird to be there alone - w/o my mom or any other cushie friends. I was also freaking out about how I couldn't take any hydro until after the test the following morning. I got my stomach all upset and everything. I finally fell asleep at 10pm PST.

Monday: I did get up early, well early PST. It was about 6:30-7am and my appt wasn't til 9am! I took a shower, dressed, got my stuff all organized and went downstairs. I wasn't sure if I was allowed to eat anything and forgot to ask. It didn't say to fast, so I didn't. I drank a pint of milk and I bought some G2 Gatorade to have too. I drank all the milk and was still thirsty, so I drank a few sips of the Gatorade. Went to admin to register at 8:30am and then to the infusion center by 8:45am. There was another woman there that was getting tested as well. It was sooo nice to have someone else to talk to. We were warned about conversing about our cases and all as Dr. L doesn't like that. But we kept it simple.

I had a slight headache and was very chilly. The ladies at the infusion center got me a warm blanket and then started the labs. I only got chillier as the time went on. Not sure if that was part of the test or not. But I chatted to help keep my mind off it. I couldn't wait to take my meds tho. When the nurses finally took my last blood draw, I took my meds immediately after. I told them how I get sleepy once I take my meds, so they let me stay and moved me to another chair in the room to be out of the way and put more warm blankets on me. I stayed and chatted and rested right up til I had to leave for my appt with Dr. M (the neurosurgeon).

At my appt, I got a lot of information. It was one of the reasons I loved having my mom there. I had my list, but got flustered and couldn't think of anymore as he was telling me stuff. He got me very nervous tho. He told me I had two separate things going on in my head. As it turns out, the tumor they saw on the last MRI was actually something called a prolactinoma. It's the hormone thats secreted when breastfeeding. (except I haven't breastfed in FIVE years!) That was the tumor they took out on the first surgery. Turns out my fluctuating cortisol leves after that surgery was just due to the stress of surgery. He didn't even touch the cushings tumor. Or if there was any there, it was sucked up.

It was the second surgery that he didn't see a tumor, but fibrous gland. He told me it was "pre hyperplasia" which means the cells are all over the gland. But in this case it was only in one spot. He cut the fibrous gland out and watching my cortisol drop to 0.9 was significant to know that he thought he got it all. He did say that he couldn't tell me for sure that this won't grow back since it was hyperplasia and they still don't know what causes it to grow, but he thought my odds were good. He was very serious about it though. I was worried.

I went back to my room and wanted to cry. I hadn't gotten my labs back yet and didn't know how I did. I figured if they did go up, that's it, it was back. I cried. Talked to my mom, my husband anyone to distract me. I went down to lunch, but wasn't hungry and still felt sick to my stomach. I got some cereal and milk and brought it upstairs to eat. Watched tv and cat napped, then went to my appt with Dr. L at 2pm.

He had the labs! YAY! Here were the results.
Baseline cortisol: 1.0 (pit is still sleeping!)
Baseline ACTH: unknown at this point
Cortisol after stim test: 2.4 (I needed to hit 18 before I could wean again. I failed. But it's all good.)
Dr. L smoothed out the wording of what Dr. M said and was more positive looking at my recent cortisol results. He said my odds were really good at this point. I hate to jinx in tho. I'm just thinking positively and will take what God has given me at this point in time.

Other numbers:
TSH: 1.38 (range .35-5.50) seems normal
Thyroxine Free T4: .67 (range .61-1.76) Low end of normal, Dr. L says I may need thyroid hormone supplement?? No T3 test tho.
Prolactin: 1.3 (numerous ranges but the closest one is 1.8-20.3 for post menopausal *sigh*)
LH: 0.8 (again numerous ranges due to cycle, but this one fits in Luteal phase, or post menopausal)
FSH: 2.2 (varies again, fits in Luteal or post menopausal again...)

I have yet to start my period post op. I've been having hot flashes sporadically. Thinking this is why tho... My cycle was totally normal to the day pre-op.

Electrolytes were on the high end of normal, but believe that was due to not having my morning meds yet. Tho glucose was high at 103 when the high end of normal was 99. Not sure if something I should be concerned about. I'm wondering if the milk and a few sips of G2 gatorade I took may have done that tho...

I also got weighed and am down 13 lbs out of the 20 I originally lost. Sitting around doing nothing and drinking sugar drinks doesn't help. But I'm working on it now. I left his office feeling good and I called everyone. I went down to dinner, ate a hamburger and some onion rings. I got myself all packed up and was ready to come home. I went to bed and actually slept pretty good. Much better than the night before.

Tuesday: I was to be waiting for the car at 8:30am. I got down early to eat a little breakfast and went to medical records to get a copy of all my labs. Was waiting just before 8:30 and it turns out the driver was early too. So we drove back to the airport, I got my boarding pass and got through security.

But then dinner and breakfast hit me. Oh man why now! Thankfully I wasn't on the plane yet. I hate plane bathrooms. So I let it all out. Thankfully I was better after that. But I bought a banana and a bottle of water just to have on the plane. I didn't eat lunch/dinner on the plane since I still wasn't feeling so hot. The flight was crazy too. Lots of turbulence. And I sat in the far back and OMG the # of people that had to go to the bathroom. Almost made me glad I didn't eat whatever they served! Thankfully I got home safely.

Hubby picked me up last night at 7pm. It was our 8th anniversary. We got each other cards and the kids got us flowers and a card with MIL's help. It was very sweet. They were up a bit late, but it was ok. I missed 'em. But after they went to bed, I turned to hubby and told him "Honey, I love you, happy anniversary, but I need to go to bed." LOL He understood and being the wonderful man he is, came to bed with me to cuddle.

Wednesday: I was worried that I would be late getting up this morning and getting the kids ready. But thankfully I did ok. I had a chiro appt after I dropped the kids off to school to adjust my back after all the plane riding. I'm resting and not doing a thing today. I slept much better than I have in the last 3 nights and I feel better today than I have in a week or so too. That stress catches up with me and I'm just glad it's over. So nice to be home. . .