Tuesday, July 22, 2014

7 Weeks and Ready for Nine Inch Nails

The title of this post says it all. While I'm not in perfect condition, I'm ready for the NIN concert next week. Fourth row!

How did I get in shape? I have walked the neighborhood often enough to work up a tiny sweat. I have practiced gentle yoga to loosen and strengthen my muscles. I have danced around the house with the NIN playlist blasting. Most importantly, I have not needed a real nap in about a week. My stamina has improved, and I will rely on the adrenaline rush to pull me through. I do plan on bringing earplugs just in case the music is too loud. You never know.

My appointments from last week went well. The neurologist decided to back me off one of my meds, which has made my head and vision much clearer. It's nice to be out of the fog. The neurosurgeon said the MRI looks great and I can ease back into normal activities. 

A few normal things I've experienced that other people who have had brain surgery may worry about:

  • It took 6 weeks for me to feel comfortable sleeping on my shunt side. I'm using a softer, faux down pillow that helps.
  • Sometimes, the area on my scalp around the shunt still itches because the skin is stretching and healing. No redness though.
  • There are muscles in my neck, shoulder, and scalp on the shunt side that are sore almost every day. Yoga helps. So does acetaminophen, or a hot pack.
  • Because the shunt feeds into my abdomen, I've had random stabbing pains that feel like a runner's stitch, but lower and not always in the same place. For a little while, I thought it was the start of a UTI, but it went away from the pelvic area and moved elsewhere. I rarely get them now, but for the first 5 weeks, it was miserable.
  • I still question my memory and cognitive ability. I have lost confidence in my brain to be correct. Whenever I misplace something, or lose my sense of direction, or forget a name, I worry. This is all normal.
I've always seen myself as a straight forward, practical, rational person. This experience has certainly allowed me a peek into the world of those with mental illness, especially dementia and Alzheimer's. Not remembering things you should is frightening.Not trusting what you perceive is scary as hell. 

There will be more doctor visits, ongoing treatment and therapy decisions to come. My posts will begin to space out a bit, but I will post news when I have it. 

Wednesday, July 9, 2014

Snark and Paranoia in the ICU

It's been five weeks and a day since my brain surgery. I have a post-op checkup with my neurologist tomorrow and on Friday an MRI immediately followed up by a visit to my neurosurgeon. Hopefully, they will give me the all clear so I can keep my skydiving appointment (kidding Mom!). 

Every post should have a point, a theme, a main idea. Besides the health update, I will share my experience in the St. Vincent's ICU:

This was my second stay in this particular ICU, but it seemed much nicer this time. It was quieter, brighter, more organized than what I remember from my first visit. The nurses were extremely nice, attentive, and competent--a smidge more than during my last stay four years ago. If I could remember names, which I am horrible at, even under normal circumstances, I would thank them individually. However, I will just have to say Thank You ICU Nurses! 
Before surgery
Before my surgery, my neurosurgeon visited my room to inform me of the situation and what he would do to fix it. I must have been under the influence of some medications because I remember saying something snarky like "Can't you just zap it with your fancy cyber-knife thingy?" (I am often snarky with family and close friends, but never with acquaintances--especially not someone who is about to cut into my brain.) I remember the smirk on his face. 

Once I resigned myself to the surgery, I told him to shave off all my hair, unlike last time when (at my request) he tried to give me bangs. Another smirk.

I remember a little bit of pre-op, when a Burgess parent who works there recognized me and said hello. Then it's all a blank. I don't recall the post-op MRI, the first time Joe saw me, waking up, nothing. I can't tell you my first memory, because I don't remember the order of things. Here are 5 things I do remember:
  1. Joe stayed with me every night in a very uncomfortable recliner and barely ate or slept. And he still looked gorgeous (see above)
  2. At one point, I had an arterial line and three IVs...and my veins suck. Joe says 4 attempts were made to place an IV at one point. I'm glad I wasn't awake.
  3. I had a major case of paranoia that seemed very real. I thought the nurses were conspiring against me. I heard conversations about me, saw them walk past my room to spy on me. I thought they were blocking the door so Joe couldn't come in. None of which occurred. I was in a panic, texting Joe, begging him to hurry up and save me. I was suspicious of my nurses and cold toward them for a long time, even after Joe told me I was hallucinating. I blame the meds, but it was so real. I mention this because it seems funny now, and a little embarrassing, but if it happens to anyone else, they won't think it's abnormal.
  4. I think at one point, the room next to mine was occupied by   someone who defecated all over the place and then spread the love. I heard the nurses chastise the patient (in a nice way--like a parent to a child) as they cleaned up. Sometimes I question the reality of this event, but I do recall my nurse entering my room with different clothes on. Some nurses are superheroes.
  5. Unlike the first time, I had no gurgling/swirling sensation in my head the first time I sat up. I didn't feel claustrophobic and have a mental breakdown due to the wrap on my head. There was no tube from my brain to a pressure bag on an IV rack to worry about. The food was slightly better.

"Real" food
I remember a few more things, but this post is long enough and readers like short, numbered lists. And I need a snack.
The Big Reveal
Fingers crossed for my appointments in the next few days. I will post an update after it all goes down. Until next week...

Tuesday, July 1, 2014

Almost Carol from The Walking Dead

It is now four weeks since my surgery and I'm coming right along. It won't be long before my hair will look like Carol Peletier's, a character on one of my favorite TV shows The Walking Dead

I wasn't a fan of Carol (played by Melissa McBride) for the first few seasons. I tend to fall for stronger characters--at least characters who show their strength in obvious ways. Carol seemed to be wimpy, a helpless victim. Now I know better. In the last two seasons, Carol has evolved into a real bad ass. This is one reason why I hope my hair follows the evolution of Carol's. Granted, her hair is the result of complete neglect and lack of available salons during the zombie apocalypse. But I bet my hair stylist will be able to coerce my 'do in a similar fashion. Heads up Merideth.

But enough about my hair. I realize there are more important things going on with my status, like my lack of headaches. Anyone who suffers chronic headaches knows how great a headache free day can be. Well I've had four weeks with no headaches! After almost a year of daily pain, this is a dream.

My major complaints right now are general weakness, slightly blurred vision (which could be a result of my meds or my age), and the knowledge that I have an internal plastic tube running from my head to my abdomen. The shunt prevents me from laying on my left side because it's uncomfortable. I've researched this on several medical forums, and it seems to be hit or miss if I'll ever get used to it. Here's an image of the shunt and how it's placed. It's function is to drain excess CSF (hydrocephalus), which is blocked by my tumor, out of my head and divert it to my abdomen where my body will take care of it naturally.

I keep reminding myself that it could be much worse. There is always someone sicker than me, weaker, more tired or frustrated than me. Or we could be in the middle of a zombie apocalypse. While it's difficult for those around me to watch my recovery, I think I have it the easiest because I know what I'm capable of and what my limitations are. I'm not stronger than the woman who undergoes rounds of chemotherapy for breast cancer or the child who spends weeks in the hospital battling brain cancer. They have it worse.

I am not the victim Carol Peletier. I am the bad ass Carol Peletier.