You can read Part 1, Part 2, and Part 3, of my adult ependymoma story, too.
After I came home, I started lying. A lot. If you know me, I probably lied to you, too.
I didn't want to seem weak or whiny, so I only said something on Facebook when I had a good day. Recovery was hard. My kids wanted to be all over me and to know "are you better yet today, Mommy?" and that was hard. Stairs were hard. Waking up in the morning was hard. Waiting for pain medicine was hard. When people came to see me, I tried to make sure that I was already downstairs and seated so they wouldn't see how slow I was or how difficult things were for me. When they were there, I tried to be alert and happy, and when they left (or got chased out by my mother and/or husband) I would sleep for HOURS to recover. I didn't tell anyone when I had to go back in to the ER or when I had a really bad day, I just tried to buck up. I had so much to be thankful for that it seemed ungrateful to complain.
I did get caught in my lie once. After the surgery, I had to go in for a lumbar puncture to confirm whether or not there were ependymoma cells in my spinal fluid (if there were, they'd need to watch for drop metastases and it might have changed the follow up treatment). Lumbar punctures aren't all that horrible. This one was planned and scheduled and so I went in, laid on a tilting table, and the doctor used an x-ray machine to guide the needle into my thoroughly numbed back and get out a small amount of fluid. No big deal. A few days after this procedure, however, I was having chills and terrible head pain, and so we went in Thursday night to the ER. After doing a neuro exam and a CT, they sent us home. Austin was supposed to have his first day back at work on Friday, so I felt badly that he wasn't going to get a great night's sleep, but he functions well on little rest, so he was okay. On Friday, however, he got a call from my neurosurgeon that the neuroradiologist looked at my CT scan when he arrived at the hospital in the morning, and was concerned that the amount of swelling and inflammation I had around my drain site indicated an infection and I needed to come in to be sure.
Fun times. Behold, my Georgetown MedStar Folder Collection:
So, my mom and I outsourced my boys to play, Savannah was already at preschool, and we headed to the ER. Because I am such a good patient (read: I don't whine, cry, complain, or even typically say ouch) one of the neurosurgery residents was going to get to do his first lumbar puncture on me in the ER room. This was a very different beast as I had to lean over a chair, but he did a pretty good job, only sending a little "shock" down my left leg. Dr. Ryan, who's our favorite person to see in the ER supervised and had ordered me some morphine to have in advance, so it was all good. Afterwards, I was laying down trying to avoid a headache (which I could not do- having two LPs in less than a week is a VERY BAD IDEA if you're trying to do silly things like "sitting upright" or even "raising your head"), and the nurse (Tina- who was awesome) had just come in to check on me. After she left, I turned slightly in the bed, and all of a sudden I turned as white as a sheet, my chest got tight, and I felt like I couldn't breathe, and I was crying in pain. Tina and the doctors came running, I earned myself some EEG leads, more morphine, and an admission. Dang it.
So, then we had to call and get our dinner delivery canceled and get Savannah picked up from preschool, and confirm the boys had somewhere to be until Austin could get home. Two of the three people we had to call didn't ask many questions, but I could literally hear the third screaming over the phone that people want to take care of me and help me and they can't do that if I won't tell them how I'm really doing.
Le Sigh. She was right. I didn't get much better at it, but I did tell her, from then on, when asked.
Also, on the 20th (which was my birthday) I got my stitches out. Dr. Nayar is a great stitcher-uper, apparently, and I am a fast healer:
My goal when we started was to walk in the DC Race For Hope, which was held May 5th in the middle of my radiation treatment. Spoiler alert: did it. Considering walking three rows of townhouses was exhausting after surgery, a 5k was quite the achievement. (Yes, I realize how sad that is- especially since they gave an award to a woman who went back to Marathon running 3 months after her tumor resection. Thanks Marathon Lady!)