Three Months/Empty House

A lot of life has happened since my last post; all of it good. 

First and most important was the Nine Inch Nails concert. It was loud. It was brilliant. It was close-up. It was most definitely not my last NIN show. I did not wear ear plugs and it was fine. I think I worried so much that I would have a weird reaction that it caused me a little anxiety, but once the show started--What Brain Surgery?  I could go on forever, but I can imagine the eye rolls, so I'll move on.

Once I passed that test, life at home became almost normal. My husband went back to traveling for work and the kids resumed a summer vacation filled with video games, marching band practices, staying up late and sleeping late. My oldest son worked as a pizza delivery guy and my daughter got her first job as a library page. 

I kept myself busy with crossword puzzles, housework, and gardening. I've reestablished the habit of wearing a hat outside when I work because I've bumped my head twice (little ones) and it causes unnecessary worry. Not only does it help protect my skin against the sun, but the brim warns me when my head gets close to any objects. The abdominal pains are few and far between. The muscles on the shunt side are still tense, but I'm working on it. 

My hair is starting to curl.

I still question my mental ability, constantly asking my husband if I act normal and speak normal, just to make sure. (He says I'm fine)

I continue to walk and practice yoga regularly, which reminds me to mention something I noticed today while doing a balancing pose. My balance had slowly decayed in the months leading up to my emergency surgery. Poses I had previously executed fairly well had become a challenge. I rationalized it as fatigue or distraction, when in reality it was brain pressure. But today I had no trouble. In fact, today I was able to hold a balancing pose I was unable to do in class. If I didn't practice yoga, I would have never known my balance had been affected. It was so subtle, I didn't notice until after.

The last couple of weeks have been busy. School started before Labor Day for my two youngest, one in high school, the other in junior high. On Saturday, we dropped our oldest son off at college. We asked him to send us a quick email to let us know he was all right (hey, it's our first). Saturday night, while were were camping, we received an email with the subject line: "I'm not dead".  

Yes, I went camping. Granted, it was at a local state park ten minutes from home, but it counts. We had planned to camp a lot more this summer, but alas...

So today was my first day at home completely alone (except for a dog and cat). It was wonderful! I wrote a little, did some research for my novel, did some laundry, some yoga, watched some TV, and right before I had to pick up my kids from marching band practice, I squeezed in this post.

My appointment with the TSC specialist at the Herscot Center got pushed to October, so I may not post again until then. I expect to discuss medication possibilities to control the tumor growth so I don't have to do this again in four years. Until then, no news is good news!

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. 

Brain Tumor Part Deux: The Backstory Story

Today marks three weeks since my second brain surgery. I didn't think I'd have to revisit this blog for such a reason, but here I am. I'm a little less bald than when I came home from the hospital, and a lot less brain tumor-y than before the surgery. Everyone around me has been amazing, especially my husband, throughout this whole experience. I would especially like to thank him, my Mom, my Mother-in-Law, my Sister, and my three great teen-age kids for their help and patience so far. 

Brain tumors are scary things, especially when they cause unexpected seizures at the most inappropriate times--like your oldest son's high school graduation. Looking back, I should have paid attention to the signs that presented themselves quite clearly. However, I wasn't the only one in denial about my tumor. 

The following is a retelling of the events that led up to my most recent surgery. It is meant as a cautionary tale for those who may have the same type of tumor as me. It is also meant as a sort of PSA for everyone to pay attention to symptoms and don't dismiss or deny chronic headaches.

I'd been having increasingly bad headaches since last summer. The first indication that the tumor had regrown was that I could no longer lay on my belly in bed to read (my favorite reading position) without my head throbbing. All the literature I had read said that the type of tumor I have, called SEGA, was super slow growing. My team of caregivers, including my surgeon and the specialists at the Herscot Center for TSC, all assumed that since I was born with the tumor, and it took 40 years to cause a problem, that I would die of old age before it was large enough to cause problems again. Wrong.

I underwent yearly MRI's and my neurosurgeon compared each image to the one previous. The tumor showed no remarkable growth. I asked about the headaches I'd been having and was reassured that the tumor was not the cause. Again, no change in size according to the radiologist and the surgeon. 

I contacted my PC and we looked for other causes--tension, stress, allergies, sinuses--and settled on sinusitis. I have had trouble with my sinuses my entire life, so this was a believable diagnosis. My PC prescribed a steroidal nasal spray to shrink the tissues and it seemed to help a little. Two months later (May), I was back in her office because my symptoms had worsened: neck and shoulder tension, throbbing head, visual auras, and nausea. I've had migraines before too, so again, I attributed these problems to tension and migraines. She prescribed a muscle relaxant for the tension. I took the medication as needed, but the problem didn't completely disappear. 

I should say that back around Thanksgiving, I had decided to quit my job as Library Assistant at the local elementary school. I had just begun my third year and I was exhausted all the time. I attributed it to the demands of balancing a full time job with three teenagers, a husband who traveled a lot for his job, my frustration with not having time (or energy) to do the things I enjoyed. I wanted to write, garden, keep my house clean, and most importantly, be a better wife and mother. 

In order to be fair to my supervisor and my coworkers, I knew I had to finish out the year. I was determined to fulfill my commitment to the school, but my heart wasn't in it. For six months, I struggled with the anxiety and stress of wishing I could just be done with my job and the guilt for feeling that way. Stress, anxiety, tension--of course I blamed these for my headaches too. If I could just make it to the end of the school year, then I could relax and all my problems would go away, right?

I almost made it. On June 1, the day of my son's high school graduation, I had a headache with auras, and nausea. I tried to power through. My parents and in-laws had come down for the event and I was determined to make it a good day for everyone. On the way into the high school, I vomited in the grass. I should have known then. 

Once we got inside, we sat toward the back in case I needed to go to the bathroom. I remember zoning out a bit as we waited for the ceremony to begin. Then I began to sob uncontrollably. I never cry. The last thing I remember is seeing the graduates lined up, ready to march in.

Apparently, I vomited again and they ushered me out to the hallway. I had a seizure. I never have had a seizure before. Someone called 911 and I was brought to Harrington ER, where I had another seizure. I was transferred to UMass Medical, and then to St. Vincent's (where I had my first surgery). I remember bits and pieces of these events, like the trees passing by during my ambulance ride. My family has filled in some of the gaps for me, but I know I'll never remember it all.

 I really wish I could have seen my son graduate. That may be the saddest part of it all for me. I'm grateful to my parents and in-laws for taking care of my children during this time. They knew just what to do, how to handle the situation, and what to say to the kids. Luckily, none of my kids saw me have a seizure and I hope they never do. My husband has been traumatized forever by witnessing his wife seizing.

So now, three weeks later, I can say I'm half way on the road to the 6 week recovery period. It really takes longer than that, but 6 weeks is a benchmark used by most surgeons. In the coming weeks, I plan to increase my endurance so that I can rock this totally badass hair the Nine Inch Nails concert on July 29. Fourth row tickets will not be given away! 

Herscot Center for TSC

At home

Once back at home, I went straight to bed. I wasn't allowed to shower until the next day, so my hair was caked with blood and betadine, but I didn't care. The house was quiet. No more buzzing, beeping, or nasty smells of the ICU. I sank down into my own mattress and slept.

The next morning, the first thing I did was shower! I felt like a new person, despite the pain medication I was on that kept me feeling a bit loopy, and the corticosteroids that kept my brain from swelling, but also made me hungry all the time. 

Over the next few days, I noticed some changes. The biggest one being that I no longer had a throbbing headache all the time from the CSF buildup. I also noticed some clicking noises in my head, which I had been prepared for by reading another craniotomy blog. Things were settling in deep inside my brain. Glad I knew about that beforehand.

It's been ten days since my surgery and I had my post-op appointment with the surgeon today. He took out the staples and I feel a whole lot lighter. We discussed the future plan of action, basically a wait and see treatment plan. The tumor is benign and slow growing. The biopsy came back as a Subependymal Giant Cell Astrocytoma (SEGA). It is usually only found in people with a certain genetic mutation called Tuberous Sclerosis Complex. I will have to be genetically tested for this, because the syndrome comes with a whole host of other benign, but sometimes problematic tumor growths throughout several systems of the body. My whole family has to be tested as well, so we can discover if my mutation was spontaneous or passed on genetically.

Right now, I'm mostly trying to concentrate on recovering from this surgery, and worry about the rest later.