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.