Skipping Through the Holidays

I realize my last post was way back in October. There hasn't been much to report since then besides Thanksgiving, Christmas, and the New Year. 

My TSC specialist, Dr. Thiele, is waiting to hear from the neuro-radiologist about my series of MRI's he was to review. They are trying to determine if the actual SEGA tumor grew, or if there was a cyst element that sprouted and grew, a possible scenario, though rare. I have upcoming appointments with both my neurologist and my neurosurgeon, as well as a scheduled brain MRI. 

Tuberous Sclerosis is called a complex because it involves many major organ systems in which benign cysts and tumors grow. Though not cancerous, they can cause structural and functional problems by virtue of location and size. Most people diagnosed with TSC, including myself, are found to have kidney involvement in the form of multiple cyst and/or angiomyolipomas (AML's). The AML's must be closely monitored for growth and removed if they become too large. I started having abdominal MRI's every six months, and now I'm having them once a year because the size of the AML's have remained stable since first diagnosis. My urologist and I agreed to try ultrasound next year so that I can avoid a post-MRI shunt check. So that's good news.

Basically, I go through phases of acceptance and annoyance. This time of year, it seems all my appointments cluster together and I am reminded of my condition. After my first surgery, it was easy to forget that I ever had a brain tumor, but now that I have a shunt, I can't ever forget. When I start to feel sorry for myself, I have to remember that I'm lucky to have a team of professionals taking care of me with amazing technology at their service. I have to remember that it could always be worse.

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. 

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.

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