Week One: Status

So I’m officially one week out of my second pituitary surgery.  I knew going into this one that it would be a much harder recovery, but I’m only just now starting to realize how hard it is to recover.   I am so weak, and exhaust so easily.  Normally I’m a ‘go, go, go’ person, but I can’t do that anymore, at least right now while my body is getting used to depending on synthetic steroid and not the real stuff.

I got released from the hospital on Wednesday, and on Thursday I went on a short field trip with my mom and dad to a UPS store to ship some things home.   We took the shuttle from the Swedish Cherry Hill campus to the First Hill campus, and then we walked for a bit.  I had to rest with my dad on a wall while mom went and completed her errand, but it was nice to get outside of the hospital and smell fresh air.   It completely tuckered me out, though.

Dad left to come back to Tennessee on Friday, so mom and I had intended to enjoy one last day in Seattle, but the field trip on Thursday really did me in.  We ended up lounging around all day and ordering in Chinese food for dinner. Kept it very low key.  I really wanted to go whale watching on this trip, but there was no way I could have handled that.  Maybe on one of my follow-up visits I’ll get to do that.

Traveling was brutal, and that’s being nice.   We hired a shuttle to pick us up and take us to the airport, and being in a van with really bad shocks didn’t help my nausea.  I’m on 90 mg of hydrocortisone right now (my fake steroid) and before we left the hospital, I had to take  what they call a “stress dose.”  You don’t realize how stressful traveling is until you’re in the thick of it, so they gave me extra steroid so I could make it through the long day.   We had wheelchair assistance to the gate in Seattle, but since we got to the gate so early, they took the wheelchair away.   I sat in a chair, but by our scheduled departure time, they decided to switch the gates.  So we had to walk – and man alive was that tough.  I was shaking like a leaf, needing extra cortisol to walk even that short of a distance.  Someone gave me a seat, and then when we got on the plane, we tried to sit up front since I was so sick.   The flight attendant was not very nice at all – the total antithesis of the Southwest policy – and yelled at me when I asked if I could hold my medications in my hand during takeoff.   I had very explicit instructions on what to do in order to travel home, and it required taking pills during flight.

My mom ended up kind of getting in her face, and giving her the mom look, which shut her up.   I moved three rows back so I could hold on to my pill bottles and not have an adrenal crisis mid-flight.  I took my next stress dose to get me through that leg of the journey.  The rest of the flight, though, that same attendant was really nice.  Mom either scared her with the “mom look,” or she spit in my Sprite.

By the time we got to Denver, I was horribly exhausted.  Our flight in Denver was delayed, but I did get wheelchair assistance the entire time there.   We also sat next to two nurses, who kept a watchful eye on me en route the entire way to Nashville.  By the time we got to Nashville, it was well past 11:00, and by the time we got to Springfield, where I’m staying for a few days, it was after midnight.

I slept almost all day yesterday, and gathered up enough energy to go to my family’s Labor Day cookout to see everyone.  My aunt made me my favorite strawberry cake for my birthday (it’s tomorrow) and I got to see everyone.  It totally wiped me out, though.  I’m still not over this diabetes insipidus complication.   If I take two pills to stop the constant peeing, I blow up like a balloon from fluid retention.  If I only take one pill, I pee every 30 minutes and I’m so thirsty my throat burns.  My tongue literally sticks to the roof of my mouth.  I down water and cokes and juice and whatever I can get my hands on, only to pee it out a few minutes later.  It’s very annoying.

I already know for sure that I could never be a junkie.  That’s kind of what I feel like with this steroid thing.  They took the tumor out, which was giving me TOO MUCH steroid and causing all kinds of health problems.  But since you need steroid to survive, they start pumping you with it, and then slowly wean you off to a manageable level.   My body literally starts shaking uncontrollably when it’s almost time for another dose of steroid.  My hands shake, my body trembles, my energy quickly depletes.  It’s like you can see my entire body shutting down without it.   And then when my mother gives me my steroid, in twenty minutes I’ve stopped shaking and trembling, and I can walk again, and the light comes back on behind my eyes.  It’s so strange.   It’s like my body needs a hit of steroid to survive.

I also had a small CSF leak happen during surgery, which is a common complication, but it’s still not fun.  They didn’t seem too concerned since it’s not flowing like a faucet out of my nose, but all day long I taste CSF fluid running down my throat, and it upsets my stomach.  I’ve tried laying at a 30-degree angle to help it heal on its own, but no luck so far.  Plus, the spinal headaches associated with CSF leaks are absolutely terrible.  It feels like there’s a jackhammer going off in the middle of my brain.   If it’s not better by next week, I’m going to take myself to Vanderbilt and have them look at it.  They took a fat graft from my abdomen to patch it, and it should heal on its own.   But I’m watching it carefully, and I’m very annoyed with it.  It tastes disgusting, and excuse my French, but it’s like I’ve eaten a bowl full of ass.  It’s awesome.  Not.

It’s nice to be home.  I go back to Seattle for a follow-up sometime in October, and hopefully go back to work around then, too.  I’m already bored to tears, but I know I have to be patient and heal.   I have a very structured regimen of drugs I have to take at different times of the day, so my cell phone alarm is constantly going off.   Right now I have 9 different prescriptions I have to take every day at varying times.  After my checkup in October, we’ll know what the remainder of my pituitary gland will do as far as function, so they will add more daily prescriptions to my regimen then.  I’m a walking, talking drug store.

Thanks for all of the love, encouragement and support.  Please come visit me when I get settled back into my place.  It’s going to be a long seven weeks having conversations with my cat!