Tuesday, March 29, 2011

Let's Try That Again.

I worked on a post for almost two hours and then accidentally deleted it so here's the short version (sigh): 

I went to the oncologist on March 15th to hear about the chemo/radiation plan and instead the nurse found an infection near my healing incision. The same surgeon who performed my Feb. 24th surgery opened the wound up on March 16th, washed it out, checked out my bone, and inserted an irrigation system in my scalp that flushed the infected area for the next five days in the hospital while I was being pumped full of anitibiotics. I loved the nurses, the dietitian, and especially the meal delievery lady who discovered my love for grilled cheese. I hate staying in the hospital but I was grateful for my awesome nurses and the spectacular view out the window. 
the drains containing my "head juice"or my particular favorite "head punch"
Me (full of fluid and anitibiotics) and my favorite nurse, Daniel

The beautiful view from my bed

Flowers from my aunt and uncle :)

I got to go home March 22nd but I am still getting antibiotic infusions three times a day through a PICC line in my right arm. The cultures showed that it was a staph infection so we are all  happy my bone was not infected or this could have been much more serious. We go back to UCSF tomorrow to finally hear what the plan for radiation/chemo will be. I am praying that God will continue to heal my body and protect it from both therapies' possible side effects. Not knowing exactly what the next few months will hold is very scary for me but Psalm 23:4 says:  
Even though I walk 
   through the darkest valley,[a] 
I will fear no evil, 
   for you are with me; 
your rod and your staff, 
   they comfort me.

Matt Redman sings about God's unconditional love and presence in his song "You Never Let Go." I have been encouraged and comforted by the chorus this week, maybe you will be too. Check it out:  http://www.youtube.com/watch?v=y83-vMeWc9E

Tuesday, March 8, 2011

UCSF Factory

I honestly can't remember much about my UCSF surgery/hospital experience. I can remember details about  the operating room from my first surgery and recall the names of almost every ICU nurse I had in December but my memories from my most recent surgery are very sporadic and hazy... The morning of the surgery we woke up to pouring rain. We jumped over the puddles in the crosswalk from the parking garage into the hospital lobby and walked to the waiting area where the pre-op packet instructed us to go. The nice lady behind the desk smiled as she handed me some paper work and directed me down the hall to admitting. After a few quick signatures, my mom and I remembered we had left an important document in the car. My dad ran back to the parking garage to try and find the it while I finished signing and dating papers about my impending brain surgery. As it turns out, my dad didn't need help finding the paper IN the car, he needed help finding the CAR. (Anyone who knows my dad will find this really hard to believe. My dad takes pride in finding the "perfect" parking spot. The car might be 28 miles away from where we're going but it also has a four and half foot buffer zone between it and any dangerous objects (i.e. other vehicles, light poles, sap-producing trees, or--God forbid--a grocery cart). In other words, our car is usually hard to miss, so it's a little strange that he had trouble finding it. But the UCSF parking garage has 8 floors and spans across both sides of the street and...oh yeah, his daughter was about to have brain surgery!!! Anyway, with my dad and the car both lost, my mom went to the parking garage and sent me upstairs to pre-op with my fiancée and his parents.

Pre-op at 6am at UCSF is...well, it's a little like an assembly line at a factory. They have twenty-eight operating rooms, and they were all going to be in use that morning which meant every single bed in pre-op was full.  I went behind the blue curtain around my bed, took my clothes off, slipped them into the plastic bag with my name written in sharpie on the side, slipped into my super flattering hospital gown, covered my backside as best I could and sat down on the edge of the bed. That's when it hit me. My parents weren't there yet. My fiancée was on the other side of the curtain, his mom and dad were waiting right outside the pre-op door to wave down my mom and dad, there were a million nurses, doctors and patients milling around  the room, but I suddenly felt very alone...Right about that time, my fiancée stuck his head around the curtain to check on me Whew! and a few minutes later my parents arrived.

I didn't see the surgeon at all before surgery this time, which made me incredibly nervous. I like to look a man in the eye before he takes a saw to my noggin...or at least shake his hand...but he did visit me after surgery in the ICU. The surgery took seven hours. It's weird to think that someone was literally in my head for seven hours...He called my parents in the waiting room to give them an update after an hour and a half, and all he said was, "She's doing great." The man is brain surgeon and all he can up with is "She's doing great"?? What does great even mean in regards to brain surgery? Or in relationship to awesome (another super vague adjective)? Half her brain is on the floor...but you know...she's really takin' it like a champ!"

All joking aside, the surgeon and my oncologist were very happy with the results. He had hoped to get 70% of what was left after the first surgery but the post-op MRI showed that he was able to get 95%. Praise the Lord!!

I spent two nights in the ICU, one more in the hospital, and was discharged on Thursday evening. My left leg and foot lost a considerable amount of feeling and sensitivity and I have a little bit of a depth perception issue in my left field of vision. Basically I'm a little wobbly, I run into things on my left side and my left leg and foot feel a little heavy and tingly. They sent me home with blood thinning medication in the (you guessed it) injection form, so my mom had to learn how to do that lovely job. The first time she almost pee'd her pants! Haha! I was on steroids again this time but for a much shorter amount of time. I'm now off of everything except my anti-seizure meds. I forgot to take them (along with ibuprofen) before I went to bed Saturday night and I woke up at 3am with a terrible head ache. I noticed a dark spot in my left eye as I lay in bed looking at the ceiling, and about fifteen minutes later I had a short focal seizure which, as usual, was followed by complete exhaustion.

For those of you wondering what I'm up to while I'm living at my parents' house, here is what I did today: I woke up and ate breakfast just in time for the nurse to get here. She comes once a week to check my vitals, look at my incision, see how I'm walking, and just generally see how I'm doing. When she left I took a walk around the neighborhood with my dad to build up the strength in my leg and then came back, did my physical therapy exercises and took a nap. After my nap I got my biology book out and got ready for my tutoring session which was from 3-5pm. Tomorrow morning I start volunteering in a kindergarten classroom...should be interesting! I don't want to teach kindergarten, I know that already, but I need the hours for one of my classes. 96 to be exact! :(

I'm still waiting to hear what the treatment plan will be. Radiation and chemotherapy are both options but I will find out for sure when I see my oncologist next Tuesday. In the meantime, I'm trying to study and get my assignments done as close to on time as possible. I have a hard time concentrating on anything for a long period of time (I get really tired) so I am very thankful for my biology tutor! :) I have an occupational therapist that comes to the house as well who is helping me work on my depth perception with some vision exercises.

I am still planning our wedding and while my fiancee was here this weekend we went wedding band shopping! I found exactly what I want and now we just have to shop around for a good price. It is so nice to have something to look forward to...sandy Hawaiian beaches for our honeymoon are sounding better everyday!

Thanks again to all of you who are keeping me in your prayers. :)