Sucker Punch: Not the Movie

It has been a few months since I posted to this blog, mostly because there has been nothing significant to report. My medical condition remains status quo, which is a good thing. I continue the slow, steady crawl back to relative normalcy--as normal as living with a brain tumor and a shunt running through the left side of my body while looking perfectly fine on the outside can be. That sounds whiny, so no more of that.

After surviving the longest, coldest, darkest winter in history along with everyone else in New England, spring has finally arrived. Trees are blooming, flowers are budding, grass is growing, and pollen is covering everything with a thick yellow dust. Like just about everyone else, this is the time of year when my sinuses act up. That little nag in the back of my head worries about each twinge and twitch and throb on the left side of my body from the chest up to the top of my crown. Compared to last year, the spring of 2015 is a walk in the park. But I never want to forget how bad it was last year. I never again want to explain my symptoms away as being caused by pollen. Sounds ridiculous, doesn't it? Confusing a brain tumor with sinus pain? Fool me once, as they say. So now I keep a little health journal on my calendar to note any head related symptoms and when they go away, just to be sure. I would recommend this practice to anyone with an ongoing medical condition.

I continue to be amazed by the transitions a human body can undergo and still remain vital. Whether it's due to my meditation practice, the trauma from last year, or simply growing older, I have become more aware of the emotional component to my condition and to my life in general. Anyone who knows me is has no doubt that I prefer to create drama on the page rather than live it. Emotions are kept contained under a pretty solid poker face, except for the "Mom look" my children know quite well. It doesn't mean I don't feel things, I simply choose not to express them outwardly. It's much simpler that way. 

Here's the part where the title of this post is explained (and no, it's not the 2011 movie, but here's a picture anyway)

I was performing the mundane task of paying the household bills, starting as usual by cleaning out the May folder, sorting through the year-old bills, statements and receipts, when I came upon the order form for Ben's high school graduation portrait. Everything stopped and I was sucker punched back into the trauma of last year. The headaches, the vomiting, the blinding auras, the hospital. Missing my oldest child's graduation. Ruining what should have been a happy occasion. The embarrassment I felt for overlooking what now seem to be obvious symptoms. All of these compounded and swirled around inside the old cocoon of guilt. I sat at my desk, tears streaming from my eyes as it all came rushing back.

Mothers feel guilty all the time for everything it seems, even for things completely out of their control. Later, I related the "sucker punch" experience to Margaret and told her how I was looking forward to her high school graduation next year. The underlying sentiment, though unspoken, was that I felt guilty for being excited when I had ruined Ben's graduation day. I have a strange feeling that Margaret's graduation day will really be Ben's too--for me and the rest of the family--and that doesn't seem fair. But that's how it goes.

I would be lying if I said I wasn't nervous about hearing the first notes of the graduation march next year. That's when it all went down, after all. Graduation march and green caps and gowns. How emotional will I be? Will I be sobbing uncontrollably like I was last year, or was that because of the tumor? At least I have a year to prepare. And now that I know it can happen when I least expect it, I will be on the lookout for possible triggers. I don't want to be caught off guard again.

So here's to the sucker punch! Be it a song, a memory, a word, or a stupid receipt from a year ago. I think I'll clean out the June 2014 file now.

News Flash: I Don't Love My Brain Tumor

It has been many, many years since I've hated something about my body. I remember my teen years; feeling bloated, lumpy, overweight, awkward. We've all been there in one way or another. 

I revisited those feelings during the baby years, although it didn't seem as bad because there were three perfectly adorable reasons for the lumps, bumps, and that one big belly scar. I also knew there were things I could do to improve the situation: Eat well, exercise, and save up for a tummy tuck to get rid of the c-section overhang that those 9+ lb babies gave to me. (No, I am not against elective plastic surgery if it makes a woman feel better)

Since then I've been operating under the notion that I loved my body. Every square inch of my 5'5" frame was just the way it should be on any given day. Some days I felt bloated, sometimes strong, or lean, or just blah. It was all okay. I preached this mantra to my teen daughter and sometimes to my family and friends, actually believing in my 100% body acceptance. . . until today.

I was practicing a new guided chakra meditation when the guide suggested that on inhale, I imagine the breath expanding throughout my body, sending love to every part of my physical self. I pictured little red rubies whizzing through the expansive network of veins, lighting up my organs and tissues with a warm glow. 

But there was one place they could not enter. One place in the deep recess of my brain that was cold, black, and surrounded by an impenetrable wall. I tried to overcome the block, but didn't want to come out of meditation, so I let it morph into a feeling of overpowering acceptance that shocked me. I don't love all of my body. I began to cry.

I hate my brain tumor.

For the first time, I think I finally consider my brain tumor as a part of my body. It sounds strange, since it's been over four years since I learned about its presence. I guess I've always thought of it as separate from me, like a "dark passenger" (a nickname my husband came up with after watching Dexter). 

Keeping the tumor separate meant that I didn't have to really accept it's permanent place inside my head. (Because of its location, it can never be completely removed.) It was annoying, like a guest who overstays their welcome. Today, I realized without the tiniest bit of my usual denial, that my brain tumor was never going away. My brain tumor is just like a lung, or a toe, or a knuckle. 

I love all the other parts of my body. But if I do not love my brain tumor, and my brain tumor is a permanent part of my body, then I can't love my whole body. This bothers me.

Will I ever love my entire body again? I feel foolish for thinking that I ever did, as if the tumor tricked me by hiding undetected until four years ago. And then I tricked myself by denying its permanent place.

How do I learn to love something mutant and abhorrent that resides in my brain like a sleeper cell? Something that shapes my life so drastically? Should I even try to love it? Or simply accept that I can't?

I wish I could revert my thinking back to the tumor being a separate entity, just to make it easier. Then I could continue to send healing, cleansing, and purifying thoughts during meditation, but never love. 

I can't be dishonest with myself. It's like a graphic photo that can't be unseen. I can't un-realize this realization. 

If I were a skater on the surface of life, I would say that ignorance is bliss. I suspect, however, that as a sophomore swimmer in the deep pools of existence, I have a lot of learning to do.

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.

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.

.

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

Eight Months/Final Post (probably)

In May, I had my six month post-op MRI and check up with my neurosurgeon. Everything looks good and I'm all clear for yearly brain MRIs. It will be nice to not think about it except once a year. Because of my Tuberous Sclerosis diagnosis (it rhymes!), I will also have yearly MRIs of my kidneys to monitor the lesions I have growing there. I also need yearly panoramic scans of my upper and lower mandibles (stemming from a tumor I had removed years ago that my doctors now suspect is related to TSC). I am by no means free of this medical circus, but at least the frequency will be less.

My hope in writing this blog was to provide my experience to someone who may be looking for answers. As I said before, prior to my brain surgery, I scoured the internet looking for personal experiences and was thankful for any information I could find that would help me prepare. So with that, I bid adieu.

Four Months and Counting

Four months and four days ago I had my brain tumor surgery. It seems like a lifetime ago, and yet in the grand scheme of things, four months is not a long time. Doctors say it can take up to a year for a person to fully recover from brain surgery. The only residual effects I have now is an itchy scalp where the scar is. The dry, cold weather of New England doesn't help much.

I was so sick of my hair, trying to cover up the shorter strip by fixing my curls forward, that when it finally grew in enough, I had my hairdresser cut it all off. Very happy!

For anyone facing brain surgery where the incision will be from ear to ear, I highly recommend just shaving all your hair off (or at least cut it very short). I would have avoided so many grimaces to my reflection in mirror had I just gone for it. I may keep it short from now on.

With the major finding of my SEGA tumor along with a number of other diagnostic characteristics, I have been officially diagnosed with Tuberous Sclerosis. For more information about Tuberous Sclerosis Complex, follow this link:

http://www.tsalliance.org/pages.aspx?content=2

Moving right along

About three or four days after my last entry, I came down with a pretty bad head cold. All of my previous, post-op symptoms seemed to return, with the addition of sinus and nasal congestion. Unfortunately, I had to return to the medicine cabinet. I suffered for two weeks until finally taking a turn for the better. I'm now back to my pill-free, headache-free self. I can't remember the last time my head throbbed. Very nice.

I have returned to my volunteer position at the elementary school library and find that my concentration is at about 95%. Sometimes I feel a little addle-brained and it takes me longer to remember names or certain words. I don't know if it's due to the surgery or if it's just me putting pressure on myself to remember everything perfectly.

Every day my scalp feels different. Sometimes the scar itself is tender, sometimes it twitches, but it's almost always itchy! I can never totally forget about it, especially since my hair isn't back to normal. I am so close to cutting it even shorter, but my friends tell me to be patient. At least it's hat season.

I had another follow-up MRI this past week and I have an appointment with my surgeon next week. I look forward to seeing the changes in my brain. Hopefully I'll get to see what the titanium joiner plates that they reattached my skull with look like.

No Headache

Today is the first day since my brain surgery, even since last March, that I haven't had a headache and haven't had to use any pain medicine. I'm not sure what I did right, if anything, but I do wish I could duplicate it for tomorrow and every day hereafter.

I had my hair cut short last weekend in an attempt to let my natural curl play a bit of camouflage. If I place my hair just right, it can cover up most of the short strip that runs across my head like a head band. It's nice to go out in public without a scarf or a hat.

I had been suffering from tension headaches that started in my shoulders and ran up the left side of my neck and scalp. There was a particular scalp muscle that would spasm like a charlie horse, causing the muscles behind, in and around my left eye to hurt. I had a chair massage at a local day spa four days ago. The scalp massage felt wonderful. I highly recommend getting one after a craniotomy, once you've been cleared. All those scalp muscles are in an angry disarray and need some TLC.

I've also begun to practice yoga again, slowly and gently. It surprises me how weak I am now. I can't hold a lunge without taking a knee. And although down dog feels great, my arms begin to shake after two breaths. But I know my strength will return. It feels so good to move again.

So maybe it's a combination of all these things that have contributed to my headache free day. Maybe tomorrow I'll revert back to the "norm". But today was pretty awesome.

Three Weeks

It's hard to believe I had brain surgery three weeks ago. The only problems I have right now are my general stamina, my headaches (which are "normal" headaches now), and vision fatigue. I've been walking for 20 minutes several days a week, trying to improve my stamina. I find that I no longer need to sleep during the day, but my eyes get tired, so I have to close them and listen to tv or music so I don't get bored. My headaches are of the tension kind, not the throbbing-blocked-CSF kind, probably from subconsciously keeping my head still, afraid to hurt it. I have a post-op appointment with my surgeon next week, after which I should be cleared for normal activities. I don't plan on getting back to my pre-surgery routine quite yet, though. But I will be glad to have a little more freedom to do what I like.

My dance with the medical community is far from over, however. Now that I'm suspected of having tuberous sclerosis complex, I face a slurry of tests encompassing almost all of my body systems, as well as more brain MRIs. If the genetic test is positive for the mutation, I will have to have my children tested, since each of them will have a 50% chance of having the mutation, requiring them to be monitored throughout their lives. My parents and my siblings will also have to be tested in order to determine if I am the first in the family, or if I inherited it from one of my parents. I have contacted The Herscot Center for TSC at Massachusetts General Hospital, a place that specializes in testing and treating people with tuberous sclerosis.

Two Weeks

It's been two weeks since my surgery and I almost feel like I'm back to normal. I can control any headaches with regular Tylenol and my only challenge is continuing to lay low when I feel so good. The doctor says no housework for a month and I'm committed to respecting that restriction. I still have trouble focusing on long term projects, but I'm not sure if it's from the surgery itself or from a lack of motivation. I've read it's not unusual to feel a little blue as the recovery seems to stall, so I try to keep that in mind.  I can look forward to the holiday season and do some on line shopping early. I can complete crossword puzzles. I can read, although the novels I used to choose can't seem to hold my attention like before, but I try anyway. My head doesn't feel totally normal yet, sort of like things are working up there. When I get tired, it's as if I took some Nyquil, slightly detached and loopy. My husband let me take a ten minute walk by myself today. Not too far and I took my cell phone. I'm beginning to understand why the elderly hate to give up their freedom. I'm basically optimistic about my recovery.

Accurate (and funny) Craniotomy Blog

This one helped me quite a bit:

http://head-nurse.blogspot.com/2008/11/what-to-expect-when-youre-expecting.html

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.

Preop and Post-op

The week before my surgery, I was scheduled for pre-op bloodwork and a physical. The nurses ushered me in rather quickly, weighed me and took my vitals. (I was happy to discover that I had met my months long goal of losing 15 lbs, something of a bright side.) Then I was hooked up to an EKG for a few minutes, all checked out normal. They drew my blood, tested me for MRSA by swabbing the inside of my nose and cheeks (something surprising, but for which I was grateful they were taking such precautions), and told me if I tested positive for MRSA, my PCP would prescribe an antibiotic before surgery. Lastly, the RN came in and began to describe the entire procedure, leaving nothing to the imagination. I wanted all the details I could get. The surgery had yet to be given a time of day, but the hospital would call the night before to tell me when to report in. She told me the surgeon had given the procedure a 4-6hr time frame, but that he was meticulous and took all the time he needed. I would have an intraventricular drain, and a turban-like head dressing, and I would spend at least one night in the ICU before moving on to the Step-Down rooms. She detailed where I was to report before surgery, and all of the interviews and repetitive questions I would be asked, what to expect right before I went into the operating room. Then she introduced me to an anesthesiologist who went over my medical history, commenting how healthy I was, besides the brain tumor. After leaving the hospital, I felt very well informed, grateful to the thorough explainations of the nurses. Much of what they said turned out to be quite accurate.

The next day, I had a brief and less comprehensive visit with the surgeon. He went over some of the same details the nurses had the day before. He then showed me where the scalp incision would be--just behind the hairline from ear to ear--which surprised me. I didn't think it would be that big! This led into a discussion about haircuts, which seemed so absurd, given the gravity of the situation. Then I asked stitches or staples, as if it mattered. My fate was sealed for sometime on Tuesday, November 2.

On Friday, October 29, I received a confirmation phone call about an MRI that I was scheduled for before the surgery. No one had told me about this, so I was a bit confused. When I called the hospital, they explained that the MRI was scheduled for 8am on Tuesday and it's purpose was for brain mapping. This was news to me. But at least I knew I had to be at the hospital on surgery day sometime before 8am.

The surgery was scheduled for 10:20am. We arrived at the admissions desk at 6am sharp, with plenty of time to wait. They brought me into a waiting room, where we spent the next couple of hours waiting nervously between periods of inane activity. I changed into a hospital gown, placed my belongings in a clear plastic bag, and waited. A hospital representative wheeled in a mobile computer station and asked a bunch of questions, then left. We waited. A nurse came in and started an IV line in my hand, then asked me some of the same questions. Finally, the surgeon came in with hair clippers and a jar of sticky-dot markers to place on my head before the brain mapping MRI. He explained that once in the operating room, he could use the brain mapping and markers as sort of a "brain gps". Sounded pretty cool. He shaved my head himself, something I wasn't expecting, and then placed the markers along my hairline and over the incision area (picture below). Then they wheeled me down to the MRI where I had a quick (comparatively speaking) scan that took about 6-7 minutes. Back to the waiting room for a few minutes, where my family gathered to see me and help the time pass quicker.

Before I knew it, the time had arrived and they moved me to the pre-op area. People started bustling around me, introducing themselves as members of the team that would be working around my head. The surgeon came and took the brain mapping MRI disk for a preview and came back with the unfortunate news that it would have to be repeated. The scan had not included all of the markers, therefore it was incomplete and useless. Down to the MRI again. Then back to the pre-op area. The anesthesiologist came by and taped the back of my left hand to a half moon shaped blue wedge, intended to angle my wrist for an easy approach to my radial artery. I had been told all of this would be done while I was under anesthesia, and I was glad when the nurse said I would be given something to help me relax. I have no idea what time it was. I vaguely remember being wheeled into the OR and being amazed at how white everything looked. Someone asked me what I could see. I think I said "white ceiling".

I woke up in post-op, apparently around 10:30pm. The surgery started late and lasted about 6 hours.( I'm lucky that I was the one sleeping and not worrying.) I was surrounded by family who all seemed to look like they were in an old, sepia-toned photograph. The light was so yellow compared to the OR. I tried to make eye contact with everyone, so they would know I was ok. Then I was wheeled into the ICU.

The first night in the ICU was almost blissful. So medicated, no worries, so tired. It was all over. Sure, my head was wrapped in a turban and I had drains coming out of my brain, but my nurse was excellent, like clockwork with those meds. I didn't even have to ask. I slept.

On Wednesday morning, when my first visitors arrived, I was still pretty upbeat, I think. Expecting to be moved to a different room, where I could have more peace and quiet.(The ICU is a very noisy place, especially at night.) Everything I had read about craniotomies mentioned that the dressings were removed after 24 hrs. I looked forward to that milestone, as well as getting the drain out of my head. It made me cringe to know that there was a tube connecting the innermost part of my brain to the outside world. I panicked when they had to bring me down to the MRI for a post-op scan. Images of a forgotten IV stand being tugged behind the gurney, or getting stuck in the elevator doors raced through my brain. I could imagine the wormy feeling of the tubes sliding out from my head. I began to cry--uncontrollably. I hadn't expected this kind of panic. But it got the best of me. When the first 24 hours passed, and my turban remained in place, it added another element of restriction and confinement. I hadn't been able to sleep at all the second night in the ICU, with all the alarms and noises. I was seriously sleep deprived, not good for someone who's supposed to be healing. I began to have more crying fits and panic attacks about my head being wrapped. I complained to the nurses that I was going stir crazy and I couldn't sleep. I was exhausted, physically and mentally. The thought of spending another night in the ICU was torture, but the surgeon insisted that I remain bandaged until the pressures in my brain were stabilized. Now I understand the reasoning, but at the time I felt like I was being tortured with sleep deprivation. On top of everything, I couldn't pee. I just wanted to go home.

On the Friday after my surgery, my surgeon's hospital colleague finally came into the room and began to unwrap my head. I have never been so happy in my life. He told me I'd go home that very day. I was still squeamish about getting the drain pulled out, but it had been clamped overnight and there had been no troubles with increased pressure. He showed a medical student what to do, and she proceeded to pull out the drain. Thankfully, I felt nothing. All my worries turned to mush. It was a little gross that some of the warm CSF dribbled onto my head and down my neck. Ick. But that was the worst of it. A few hours later, I was discharged directly from the ICU, something that never happens, according to the nurses.

Of all the reading I did beforehand, trying to prepare myself for the craniotomy, I never once came across any account of the hopeless, suffocating feeling of having my head wrapped for days. Maybe I'm the only one that will ever be bothered by it. But maybe someone might read this and be prepared for the possibility that the wrappings may not come off in 24 hours.

A week and a day

It's been a week and a day since my craniotomy and I feel like there is some information I'd like to share for anyone who may be going through the same experience. I've read a few blogs from others who've had craniotomies, and they helped prepare me for things I never would have expected. My thanks to them.

In the following days, I hope to recap my experiences from my early symptoms, through to the discovery of the tumor and the diagnosis, as well as the steps in recovery process.