What it's like to have a brain tumor

Recently a friend of mine suggested that I blog about what it's like to have a brain tumor.  She was suggesting this because I was telling her that the most frequent question I am asked by anyone who discovers my medical history is "how did you know you had  a tumor?  What were your symptoms?"  I completely understand this line of questioning because let's face it, if I say "well I had a weird blue rash on my stomach" we all know that every single person will look at their stomach for a blue rash as soon as they can.  It's human nature.

I try not to dwell on "the tumor" in this blog because I (hopefully) have a lot more dimension to me than just a 5 yr old diagnosis but I certainly don't mind talking about it, so here goes.

Five years ago my left eye began to twitch.  The twitch didn't go away after a week or a month or even 2 months.   Steve and I thought it was stress.  Finally it was bugging me so much that I went to a neurologist who prescribed 5 mg of valium to see if the twitch would decrease or even go away.  I took the valium for 3 days.  During those 3 days the twitch didn't stop.  In fact I was starting to feel an odd "pulling" sensation on the left side of my face, as if the muscles were pulled down just for a second and then released.  The neurologist ordered an MRI for the following week.  By the time the MRI came around I was experiencing a "zapping" sensation in my face.  Have you ever walked across carpet in socks and then gotten a shock when you touched a light switch or another person?  It felt exactly like that.

The MRI revealed a squash-shaped mass that was wrapped all around my brain stem and extending toward my left ear.  They gave me an injection of dye to check for cancer.  The center of the tumor lit up with the dye (which is bad) so my initial diagnosis was of an inoperable cancerous mass surrounded by necrotic (dead) brain tissue.

That was not a good day.

Later testing and evaluation revealed that what was originally thought to be cancer was actually an artery that had been completely surrounded by the tumor.  The tumor was thought to be benign and the diagnosis was an epidermoid brain tumor.  Very rare.  No known cure.  Surgery is best treatment.  Because I was exhibiting symptoms but was in overall excellent health I was considered an excellent candidate for surgery.  I had a brain tumor, but at least it was benign!

That was a good day.

By this time the left side of my face was mostly paralyzed.  It took massive effort on my part to talk, blink, eat, drink, and swallow.  Our family took a trip to Chicago and we ate at the Cheesecake Factory restaurant.  The paralysis was so bad I was unable to chew my food because I couldn't make my mouth work properly and the food kept falling out.  I was embarrassed, scared, sad, and angry.

That was not a good day.

Three months after diagnosis the decision to have surgery was made and the date set.  I was terrified because I knew going in that the surgeon wouldn't be able to remove the tumor, just "deflate" it because of its proximity to and wrapping around of the brain stem and a major artery.  At that time I wasn't worried about living with the tumor long term, I was just worried about surviving the surgery.

That was not a good day either (I threw up a lot from the anesthesia, which is hard to do while not moving your head).

Well survive I did and so here I am today with what you could call a chronic condition.  I believe that I have complete control over whether or not the tumor grows because I believe that diet and exercise play a significant part in abnormal cell division and our bodies' abilities to control cellular overgrowth (which is all a tumor is when you think about it).  I have not yet met a brain surgeon who agrees with me about this, but I know deep in my bones that I am right.  When I discovered the "cure" for everything is a mixture of diet, exercise, and attitude I felt empowered.  Strong.  Able to defeat all obstacles.

That was a good day.

Life is made up of many days, however, so sometimes my diet is pristine and I am a model for healthy eating, exercise, and stress management.  Sometimes my diet is a mess (as you well know), exercise is sporadic, and stress is managed by consuming sugar.  I have to be very careful to limit the bad times because I don't want to promote abnormal cell growth.

So what is it like to have a brain tumor?  Well, it's like life always is: there are good days and bad days.  I feel a strong sense of being on the right path and have tremendous faith in my game plan: research what causes abnormal cell growth (ummm...SUGAR causes abnormal cell growth), limit my exposure to as much junk food, chemicals, toxins as possible, and exercise to keep the lymph circulating and my overall level of health high.  But isn't that life?  Call it a brain tumor or high blood pressure or diabetes or a heart murmur or arthritis or depression or whatever else ails you.  Everybody has something that scares them, challenges them, reminds them that life is precious, sacred, and brief.

So much of what you read in this blog is my continual search for balance, health, laughter, and love and I know how critical the search is because I remember how I felt in those early days after diagnosis when I thought my life would be numbered in months, not years.

I love my life.  I wouldn't change a single thing, not even the brain tumor because I have learned so much from the experience and it continually grounds me, helps me to re-focus on what is really important.  I recently celebrated my 40th birthday, a milestone I didn't think I'd make just a few short years ago.  Along the way I think I'm gaining a little wisdom:

Every day that I am alive, my family and friends are alive, the sun rises and the stars shine is a good day.

My wish for you: Have a great day! 
With Love, Beth

A Room with a View

How well are you feeling right now?  Any lethargy?  Congestion?  Depression?  Do you have a headache?  The fact is it can be hard to feel consistently well during the winter months and it may have little to do with germs.  Depending on where you live, you may go days, or even weeks without adequate sunshine.  Even on sunny days the cold temperatures, snowy conditions, or job requirements may keep you from really getting to benefit from the sun.

That's why surrounding yourself with beauty is so important.  How beautiful is the room you are in right now?  Do you feel uplifted?  Inspired?  Peaceful?  Are you making it a priority to surround yourself with abundant natural light, colors that relax and inspire you, and objects that are useful, beautiful, and comforting?

I didn't realize how critical this was until I moved from a home I loved in Cincinnati: a home that was flooded with sunlight thanks to its southern exposure, plethora of windows, and high ceilings, to a home in Toledo that was deeply shaded by beautiful trees but had dark stained window and wall trim, low ceilings, fewer windows, and a western exposure.  I frequently felt depressed in that home.  I felt restless.  After the discovery of my brain tumor I felt like the low ceilings pressed down on me and the dark woodwork sucked out all the light.  If that house hadn't had a sunroom I wonder if I would have had the mental strength to bounce back after brain surgery.

I began a quest to improve that house.  You can imagine how thrilled Steve was with the endless list of home improvement projects, but even he had to admit that as the days and weeks went by and I painstakingly painted every inch of that dark woodwork a fresh white, removed any heavy window coverings and improved the lighting to lighten and brighten each room that the house began to feel happier.  It wasn't just my perception, though perception is very important, it was a feeling shared by friends and neighbors who visited too.  In fact when we went to sell that house every realtor who came through remarked upon how unusual it was to find such a light, bright house in such a heavily wooded neighborhood.

I love the home I am in now.  Once again I have a southern exposure, many windows, high ceilings, and now the addition of a magnificent view.  I make it a priority to surround myself with things I truly love and I continually feel uplifted when at home.  It has taken me many years and a lot of trial and error to get to this point and I know it's a continual evolution but it's worth it.  My mental, physical, and spiritual wellbeing are worth it.

What inspires you?  Are there any simple changes you can make to your home, office, car, or view that will make it more uplifting for you?

4 dinner parties, 1 cookie exchange, covered in hives, still no sugar

Well, still considerably less sugar, no more than 24 grams each day. The detox process is getting a little weird, might I say. I thought I would have a whopper of a headache and I really haven't had that, but today I am covered with hives that appear on my neck, go away, move to my back, go away, currently on my face and left elbow (?), but I trust they will go away soon. I had absolutely no idea how much sugar I was consuming until I started this little exercise because I didn't know that things like spaghetti sauce, salsa, ketchup, and salad dressing could have so much sugar!

I have based my 24 grams limit upon information I found on several websites, including this news article www.msnbc.msn.com/id/32543288/ns/health-diet_and_nutrition/ that suggests that for 1800 calories consumed only 6 teaspoons (or 24 grams) of sugar should be consumed. There was also a lot of information on websites catering to diabetes but the one I have linked says all the same stuff very concisely: eat less sugar.

I'm eating a lot of natural peanut butter and tuna fish, that's for sure. I still have a smoothie for breakfast and that takes up a total of 12 grams (6 grams of sugar for 1/2 c. blueberries and 6 grams for 1/2 a banana) so the rest of the day is pretty restricted. Counting the sugar has given me a lot more freedom than I would have thought because I feel like I can make choices: skip the smoothie and save 12 grams that I can then use for something else, OR have a smoothie for breakfast and another for lunch and that's all the sugar for the day but I only have dinner to get through and that's actually the easiest meal for me, OR drink two 1/2 smoothies for snack time and still have 12 grams for left...you get the idea.

When I lived in Toledo I actually had this list posted to my pantry door: www.mercola.com/article/sugar/dangers_of_sugar.htm the article lists 76 ways sugar can ruin your health. I liked the list because it has scientific research backing it up, it is easy to read, and it listed a lot of things I hadn't realized could be affected by sugar such as sugar can cause a loss cellular elasticity (turkey waddle neck, anyone?), and sugar can cause nearsightedness, reduce collagen in skin, and contributes to accelerated aging! I just see myself with coke-bottle-thick-glasses, saggy skin, and looking about 65 when I'm only 40 all because of sugar! Not a pretty picture. Anyway, when we moved the list probably got thrown into a recycle bin because I hadn't seen it for awhile until I embarked on this new venture. Rereading the list was an excellent jolt for me and I will print it out again and re-post it once I buy ink for my printer...(As a note to all of you waiting for Christmas cards, the ink-buying-delay also applies).

(Also just to keep you informed, the hives have moved to my right calf and right pinkie finger...)

I became particularly interested in sugar's effect on the body when I was looking for ways to reduce my brain tumor. My neurologist and neurosurgeon, both extremely educated and fantastic men, basically said that there wasn't anything I could do but have surgery. I couldn't accept that. They also didn't recognize a link between nerve irritation and hormones but I knew for a fact that my symptoms were worse during my period than other times of the month. Armed with this limited info and a life-or-death-desire to not have brain surgery again, I began to research online "hormones" and "tumors." What I found is basically summed up in 2 facts: 1.tumors (cancer) feed on sugar; 2.sugar can throw your hormones out of whack.

Could there be a greater impetus to reduce sugar than that?

Turkeys, mental illness, hypochondria, and decorating

What do turkeys, mental illness, hypochondria, and decorating all have in common? They have all been on the forefront of my mind for the past week.

I roasted my first turkey EVER this Thanksgiving. I was quite proud of the result because it looked good, it tasted good, there was enough of it, and all of the trimmings were done by the time the turkey was done. I can't believe how nervous I was about cooking this bird, but from the relief I felt when it was all done I guess I was angsting quite a bit. Luckily for me the guest list was very short this Thanksgiving: my immediate family and my brother Rob. Short and sweet you might say, though the sweet part was bitter. I haven't lived in the same house or town with my brother since 1987. I haven't spent more than a day with him in 22 years. He came to stay from Wednesday to Saturday. I was a little nervous about him coming - mostly the what am I going to do with a houseguest that will be easy enough for me but entertaining enough for them? kind of nervousness that I always feel when having extended-stay company. Ignorance truly was bliss because had I known what I was in for, I would have been terrified. I think my brother may have a mental illness. I don't use the term lightly, or in jest, I think the man may have a diagnosable-and-hopefully-treatable-mental illness. From the time I picked him up at the airport until the time I dropped him back off 3 and 1/2 days later he spoke almost constantly about his higher self that is really from another planet that chose this incarnation to fight the forces of good and evil and how this fight isn't going very well right now because the forces of darkness are trying to suppress his higher self and once he learns to levitate he will fly around the world at the speed of sound and do I think he'll need any special equipment to do that? 'cause he's thinking he may have to work out the physics of this and he's trying to lose some weight but the person inside him is trying to stay fat and...it was quite scary. Sometime early Wednesday morning my eye began twitching and by Saturday it was twitching so much that the muscle felt heavy and it was hard for me to keep my eye fully open. I kept telling myself this was stress, just stress, relax Beth relax, but the eye just kept on twitching. The twitching eye was the first and earliest symptom of the Epidermoid brain tumor I had 5 years ago and so as the eye kept twitching I began to worry: what if the tumor has grown back? What if my eye doesn't stop twitching and I have to have brain surgery again? What if the tumor grows back more quickly and I lose the ability to swallow this time? The what-if scenarios my brain was creating were as scary as the words my brother was speaking.

It made for a rough Thanksgiving.

And just like the smell of turkey, the effects of Rob's visit are lingering: what, if anything, should I be doing for my brother? If someone thinks they are an alien incarnated to a human form does that make them crazy? And even if they are crazy, so what? Does going around thinking you're going to learn to levitate and then fly around the world make you a danger to yourself or anyone else? And if there is something I should be doing, how should I do it? He's a functioning adult. He seems happy. He is law abiding and tax paying and productive. Who am I to say he's not an alien?

The turkey is gone, the pies are eaten, the cranberry sauce discarded. My eye is still twitching. It is twitching less. The tightness in my face is gone. I know it was stress and I know that my lifelong challenge will be to find healthy and appropriate ways to deal with the stress that mostly seems to come (for me) from family. I made huge strides on Sunday and Monday by throwing my agitated, nervous energy into holiday decorating. The house looks festive and beautiful. Last night Steve made our first fire in the wood burning fireplace. The stockings are hung by the mantel with care. The tree is decorated. Everything sparkles. I felt at peace. I felt supported by my husband, my friends, and God. I felt like I could handle anything: odd brothers, tumors, life -- as long as I had a center to return to. The paradox is that I create the center, just as much as I create the stress by how I react to odd brothers, tumors, and life.

I am challenging myself this holiday season to break my old patterns and create new, healthier ways to deal with life's everyday stresses. I don't know if it will be exercise, meditation, music, or blogging (or maybe even a combination of all of the above) that will help me to create that "centered" feeling, but I know that I am thankful that this Thanksgiving showed me where I still need to do a lot of work on myself.

Learning to handle stress appropriately: what better gift could I give myself this holiday season?

Eat This...AND That..and that...and that..

After a four year hiatus I am returning to a vegan lifestyle. I have never felt so good in my life as I did during the 5 years I was a total vegan: my energy was up, I slept great, I was always healthy, people said I looked younger, and keeping my figure was effortless. You may wonder what could occur in someone's life to make them change a lifestyle that is obviously working so well for them, well, it was during the height of all this health that I was diagnosed with a brain tumor. While I know logically that it's not possible that being vegan caused the tumor somewhere in my head the lifestyle leading up to the diagnosis and the actual diagnosis itself got all twisted up and I found myself reluctant to continue being a vegan. At first it was for practical purposes that I began eating animal products: I needed to keep my weight up. After the tumor was discovered I was panicked, unable to eat, continuously nauseous (due to fear), and losing weight rapidly. Because I was already very slender when I was diagnosed, the 5 pounds that I dropped within the first 2 weeks were really noticeable. Steve said "you've got to eat and not that weird seaweed crap you usually eat, I want you to eat meat!" and so I did. I felt like somehow the tumor was punishment for the ultra-healthy lifestyle. I know it doesn't make sense, but that's what I was thinking.

Then, after the surgery I returned to veganism but found myself feeling afraid, shaky, and nervous most of the time. I didn't realize at the time that I was dealing with what a lot of people who have had a surgery deal with - a kind of post-traumatic-stress-syndrome where you know the immediate danger is over but now begin to ask the big questions about long-term survival. I found that I seemed to feel less shaky when I ate bigger, fuller meals and that quickly led to meat and then finally even to some dairy as well. I gained weight. I felt okay. I began to get the regular assortment of colds that most people consider normal - though I had not had a cold the entire time I was vegan. My allergies kicked in to high gear.

A year went by. Then two. Three. Four years later here I am feeling awful. I have joint aches, I have had several colds/sinus infections, I feel heavy, lethargic, and old. I kept wondering what should I be doing that I am not already doing? I exercise. I eat a very balanced diet of fruits and veggies. I am active with friends and happy in my marriage and family life. Why don't I feel well? While walking yesterday it hit me: it's what I eat. I think that some people's bodies just aren't really made to digest animal products. Specifically I think my body doesn't digest them well.

The first time I went vegan it was like throwing a switch: one day I was eating pepperoni pizza, the next day I wouldn't eat anything made with animal products. That approach works, but maybe there is a more balanced approach that I can take this time around. I simply won't prepare any foods containing animal products for myself when I am at home. I always ate whatever I was served at people's homes and I will continue to do that but this time I won't be such a pain when we go out to restaurants. This time I will allow for gray areas such as butter or eggs. I'm going to try it. I think a month's worth of time is a reasonable test period and I'm going to see how I feel. My theory is that the joint aches, stomach aches, and heaviness will be gone. I'll let you know.

Either way it's going to be good for me to dissociate veganism from a brain tumor. It's good to process all those feelings and put them in perspective. It's good to look forward to eating again because what I am eating feels right to me.

Glass of soy milk, anyone?

Shouldn't we "Race To Prevent?"

The SPAM filter in my email is working overtime: must be getting close to registration time for the Race for the Cure, Light the Night, MS Walk-A-Thon, etc., etc.

I have done them all. I believed in them. Walking, wearing the T-shirt, organizing the Brownie troops to get out and support the event I felt virtuous, I really did. What changed?

I know what changed: I began to notice that everyone was focusing on a cure, new drug therapies, new surgical techniques, and improved hospital stays. Why were we accepting that you had to get the disease at all? Why is it okay to go through the pain and terror of the diagnosis as long as there is reasonable hope the "cure" will work? I can define prevention with no problem, but how is "cure" being defined? Is radical, invasive surgery a "cure"? Is taking toxic medications that cause your hair to fall out and your stomach to heave a "cure"? I know, I know, it's my Pink Ribbon Rant all over again.

I am stepping up onto my soap box now, so hold on to your hats:

I have been there. I have been told "you have a tumor. It appears inoperable. The MRI dye is lighting up showing what could be cancer but we won't know for sure until we run more tests. This is very serious." I know the sheer terror that accompanies the diagnosis. I know the agony of gauging how soon the tumor will kill you versus how dangerous the surgical procedure. I can attest firsthand to the misery of lying in an intensive care unit while mysterious and scary-sounding drugs are fed intraveneously into your body. The fear of post-surgical infection, fever, or swelling. I had to sign a paper that said that I understood that the surgery I was about to have carried a high risk of stroke, coma, or death, and that I still gave the hospital permission to proceed. I have kissed my only child goodnight knowing that it may be the last time I ever see her, yet not knowing any other option. I have climbed up onto an operating table while a team of nurses prepared the bone saw and head clamp that would be needed to access my brain. I have been there and I wouldn't wish those experiences on anyone else -- ever. Yet many would clap me on the back and say "Yes, but you're cured!" Aside from the $28,000 my insurance company paid for the surgery, what was the cost?

So now I find myself angry. I am angry that hundreds of thousands of dollars are raised by extremely hard-working, well-meaning, altruistic people so that a cure may be found for xxxx (insert your disease of choice here) while companies who know better put forth no money for prevention. I am angry that companies can sponsor various walk-a-thons and fundraisers while knowingly putting carcinogens in their products. I am angry that our society does not force these companies to help us keep our bodies and planet healthy. I am angry that pesticides, food additives and preservatives, air pollutants, insecticides, and dangerous drugs are accepted as part of life in the United States yet billions of dollars is spent trying to "cure" the diseases these things cause.

I cannot be complacent. It is not okay for only the rich to have access to organic foods, clothing, and bedding. It is not okay for our food to be irradiated so that later our tumors can be radiated. It is not okay for our children to be given mercury in their vaccines and filled in their teeth. It is not okay for our foods to be laden with antibiotics and hormones while our children suffer from antibiotic-resistant strep, our boys are sterile, and our girls menstruate at age 7.

Do not fool yourselves folks, you are involved in a race: as long as the assumption is that we must be reactive and not proactive we are all racing toward one disease or another. Am I being gloomy? A doom-sayer? Melodramatic? I probably am. I am passionate about this subject and passion usually invites hyperbole.

Then again, I'm the one who saw the bone saw...

Hypochondriacs 'R' Us

About 10 years ago I finally admitted to a sad diagnosis: I am a hypochondriac. This condition afflicts untold numbers of men and women, can strike at anytime, is rarely fatal, has no known cure, but may significantly affect quality of life.

I am not a severe hypochondriac. In fact, I rarely go to the doctor aside from annual routine checkups. I am the worry-in-the-middle-of-the-night and search-the-internet-for-answers-to-my-worries kind of hypochondriac. I have self-diagnosed-and-then-discarded diabetes, blindness, rabies (yes, rabies), cancer, a stroke, a heart attack, skin cancer, arthritis, strep throat, bladder infections, colitis, and food poisoning. I did not actually go to the doctor for any of these because they all occurred between 11p.m. and 6a.m., were cured by the light of day or my husband’s calming rationalization, and didn’t crop up again, at least not until I had another sleepless night.

Okay, maybe I am a severe hypochondriac, I just don’t seek treatment for my disease. If I sleep through the night I am miraculously healthy. One middle of the night waking can yield some terrible conditions, most life-threatening, all seriously uncomfortable. Why do I do this to myself? What makes me climb into that middle-of-the-night torture chamber again and again? I know if I sought medical help I would probably be given some prescription to keep me from having “obsessive thoughts” but doesn’t taking medication to prevent hypochondria seem a little ironic? Besides, I don’t have obsessive thoughts during the day, this is my own personal version of being afraid of the dark.

Admittedly I have had some weird medical conditions which certainly contribute to my sense of “if it’s weird and life threatening, it will happen to me.” When I was 5 I had scarlet fever, something I thought only happened to people in the 1800s. When I was 7 I had a life-threatening reaction to penicillin and lost consciousness. When I was 34 I had an extremely rare brain tumor. I have had various moles cut off that “looked funny” and some even turned out to be a little “funny” though none were cancerous. Except for the brain tumor, it’s probably a pretty typical medical file but for me it’s been enough to create a pattern of worry and expectancy. I mean, really, rabies??

I propose a new era of medical doctors be trained. These doctors would only tell you the good news about your health and would downplay any negative health issues as “normal, but we’ll go ahead and remove it, treat it, give you a prescription, whatever is appropriate.” Part of the problem for me is constantly hearing “wow, scarlet fever! I hope that didn’t damage your heart of your eyes!” or “Oh, you’ve had some moles removed before and your dad has a history of melanoma, well, you’re pretty likely to have some form of skin cancer so let’s cut this off…” even “hey, that brain tumor is extremely rare, does that mean you should play the lottery or avoid thunderstorms, ha ha ha…” These sentiments, expressed by trained medical professionals, do not engender faith in one’s long term health.

I want a doctor who says “Beth, you’re fine. You eat healthfully, you exercise, you meditate, you have a family history of longevity, you’ll be here long after me.” Perhaps that goes against the grain of most doctors who are trained to diagnose, treat, and then wait for the next disease, but that’s what I want to hear.

After sitting so long typing this my lower back is a little sore: gee, I hope nothing is wrong with my kidneys…