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