Four Months/ Herscot Center for TSC

Doppleganger?

Last Friday I met with Dr. Elizabeth Thiele at the Herscot Center for TSC. I have been her patient since my first diagnosis with a mild form of tuberous sclerosis in 2010. 

My last visit with her was a year and a half ago, though I'm supposed to see her once a year. My previous appointment was scheduled for April 19, 2013, the Friday after the Boston Marathon bombing. Dr. Thiele herself called me from her home and said the city was shut down and all appointments were canceled. I never rescheduled. 

Fast forward to this past Friday, when I walk into her office and she looks at me and knows immediately that this isn't the usual appointment. Normally, I stride in alone with a smile and say everything is great, kids are good, no problems. This time, with Joe by my side, I tell her about my emergency surgery in June. She stares at me, wide-eyed as her jaw drops. I immediately feel better.

One of the monkeys on my back this summer has been guilt. Guilt over whether I had done enough to try and prevent the trauma of emergency brain surgery. Surely I could have been more diligent, pestered my doctors, questioned the MRI reports about the tumor size...something. 

Dr. Thiele's reaction reassured me that I wasn't the only one dumbfounded that my tumor had grown again. She kept looking at me and shaking her head, amazed that it grew so fast between my last MRI in January and June. It took almost 40 years for it to even become a problem. But MRI's aren't perfect (which we know), since it's a 2D machine trying to capture a 3D image, the new growth may have not been captured. My kind of tumor (SEGA) isn't supposed to even grow in adults, let alone grow so fast. Dr. Thiele got a gleam in her eye at the promise of a medical mystery to be solved. I actually got excited for her!

Not my brain, by the way

Looking at it from the outside, my case is complex and interesting. TSC is usually diagnosed early in children who suffer from seizures, multi-system benign tumors, skin lesions, mental disabilities, and much more. SEGA tumors are thought to be present at birth as small nodules in the brain, only growing until the age of 18 (although the age has recently been raised to 25). I was diagnosed at age 39 only because the SEGA had grown large enough to cause problems. If I hadn't had continuous headaches, I would never know I had TSC.

So now the plan is to wait for Dr. Thiele to consult with her neurologist colleague who specializes in TSC too. They plan to go through the whole series of MRIs from day one and map the growth to find a clue as to what happened. Based on the findings, and if the SEGA grows again, I may start a new medication to control it and prevent another surgery. Every other aspect of my condition seems stable for now, so we will continue monitoring.

TSC is rare. My kind of TSC is rare. Now, I have a strange little complication that doesn't fit the profile. That makes me even more rarer? Rrraaarrrerrrr.

Hey--I have to keep a sense of humor about it. Since TSC is a specific gene mutation (although they can't find mine of course), I guess I reserve the right to occasionally call myself a mutant, especially around Halloween. 

I choose mutant Rogue

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. 

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!). 

Progress

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:

#wonderfulhusband

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...

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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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