I ask myself this a few times a day right now. The last ten days are so jumbled. I’m doing my best each day to wake up and sort out what/how things happened. On March 5th, Blake and I headed up here to Denver to get started on a treatment for this crazy little brain bubble of mine. Here I am, thirteen days later, mostly tumor free, and working each day to get back to “me”.
During the appointment with my neurosurgeon on March 7th, he explained to us that he felt my tumor was, if anything, a-typical and growing faster than a normal or benign meningioma. He had been consulting with the neurologist and felt it could be cancerous and that they would like it out ASAP. He also wanted to perform a spinal tap at the same time to gather as much information about this as we could. He was leaning towards diagnosing it as a lymphoma, and assured us that if he was correct, we found it nice and early. Of course he said all of this could only be confirmed by removing the tumor.
If it wasn’t cancerous, however, he still deemed it necessary for removal due to the symptoms I had been developing. He was informative yet kind while delivering a possible cancer diagnosis to a 23 year-old mother of two (That takes skill man!) He also knew we lived so far away and that we were nervous about drawing this process out for our boys, so he sent us to be admitted through the ER that night at Swedish Medical Center.
He scheduled the procedure for the following evening and had us stop by a book store on our way in! The next morning I had these super attractive green “cheerios” placed by the neurosurgeon before heading to MRI (for mapping purposes during the surgery). Thus began the ever-changing haircut that I still haven’t gotten around to figuring out what to do with – we’ll get there!) Right as we were wheeling down for my MRI, my oldest sister showed up (PhEw)! After the MRI we did a whole lot of WAITING! My surgeon came in later that day and informed us that the tumor had grown and started to entangle itself in the sagittal sinus (the portion of your brain that allows for all the blood to drain… kind of a biggie). Their plan was to perform the lumbar puncture, remove a portion of the tumor, and send them both to pathology immediately. If they were cancerous, they would do their very best to remove as much of the tumor as they could with it being in this new tricky spot. If it was not, they would still remove as much of the tumor as they could, but steer clear of the portion that was entangling the blood vessels, and we could deal with the rest down the road. (Mind you, I’m hearing all this like, RIGHT before surgery.) Right as we were being wheeled down to pre-op, some friends and our pastor showed up (most perfect timing) and I was able to keep some-what calm while getting ready. I knew I could wake up to a whole slew of different life-altering changes, and I realized there was absolutely no sense in going over the “what-ifs”. There were simply too many.
I said goodbye to my family, and was wheeled into the cold OR. Everyone was sweet and comforting. The insane amount of lights and instruments I had never seen before was overwhelming. I remember them putting a hair net on me and wondering, “Um, why?” The anesthesiologist was holding my hand and letting me know she wouldn’t leave me for a second, while I felt the thick sleep come on. And then… sick.
I’ve never been good with anesthesia. Waking up for me is a nightmare beyond all nightmares. Besides being so confused, I always wake up violently ill. I am allergic to most anti-nausea medications which doesn’t help things out.
Throwing up just hours after having your skull cut open is not an experience I recommend. I could hardly catch my breath, aside from the thick, heavy blanket of drugs I was fighting out from under, my nausea and vertigo made me tense, and my head felt like it was splitting (which in all fairness, it already had). Aside from that, I realized I could hardly see. The nurse immediately called my surgeon at 2am
to figure out what was going on. I only remember little blips and portions of that night: my amazing nurse who made eye contact with me even though I was only about 8% conscious, just to tell me they would not leave my side until I was ok, my poor pastor handing me my bucket time and time again, realizing I could barely see the surgeons face as he asked me questions.
Sometime by that next day, they had tried me on an anti-nausea medication that sent me into an incoherent paranoia. I started panicking (probably more internally than anything) but I was terrified. The new nurse cut to the chase and gave me Valium, stating that he had the exact same reaction to that medication, and it was horrifying. Then came sweet relief. I was still a little sick, but mainly I slept for a long time. I woke up long enough to learn my new friends name, and decided to dub him the “wizard”. (Disclaimer: I am still entirely unaware of how many people I was sick on, bled on, fell in love with, or passed out on. I actually ran into my ICU nurse today in the cafeteria and was able to properly thank him. I think he likes his new title though.) I remember looking at my monitor at one point and seeing how insanely low the numbers were, and then realized my nurse was trying his hardest to get me alert and awake again. I think it had been a few days by then, when we were only anticipating a maximum of 24 hours in the ICU. Slowly I came off the heavy drugs while being able to hold my stomach and bear the vertigo. The oxygen came off and I was standing up for a few seconds at a time. I always woke up back in bed though which meant I was still passing out on people. I was transferred from ICU to the Neuro floor feeling just a little more alive.
My eyesight was still unwavering at this point, which kind of threw everything off. Once or twice, we got behind on pain meds but were able to catch back up pretty quickly. The staff was working really hard to get me up and walking a few times a day, which felt like running a marathon each go. I usually didn’t make it back to the room, but at least by now I was remaining awake until I got back in bed. It felt so weird having about 5 different people needing to assist me each time I did anything. There was the gait belt monitor, then someone had to turn off the alarm to my bed, then someone else had to roll along the IV pole, then another person had to help me with the walker, and usually a family member would follow with a wheelchair. I usually needed Blake to walk right in front of me so I could concentrate on where I was going, or else my brain got overloaded and I didn’t quite see a hallway anymore. Each time I walked, I felt like I made huge improvements, and before we knew it, our Dr. was suggesting a short stay in rehab before sending us home. Right around that same time though, we were all realizing that my vision was NOT improving. Even now, after moving to rehab and receiving a much longer anticipated stay than we were guessing (almost two weeks total) we still don’t know much about what is going on. Follow up CT and MRI scans show fluid and blood on the brain where the majority of the tumor was removed, which could be an explanation, but we have many more appointments and tests to run before coming to a conclusion. We are taking it one day at a time, each day accompanied by such an array of emotions and a fierce longing for our beautiful boys. These days are very long and pretty darn lonely, as we only have about 3 hours of PT a day, and I’m just now allowed to be wheeled around the hospital by Blake (which has completely saved my sanity). We can’t wait to be home, but I am very grateful that I am getting the highest level of care for whatever is going on in my brain right now.