Thursday, May 14, 2015

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.

Wednesday, February 4, 2015

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.

Sunday, January 25, 2015

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.

Tuesday, October 21, 2014

Four Months/ Herscot Center for TSC


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

Tuesday, September 2, 2014

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!

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...