One Year Ago…

…in a pumpkin patch far, far away…I was feeling cranky and blue. Distant, perhaps in a fog of mood. It was warm, much like today will be.

Everything changed that day. I had a seizure and got to ride in an ambulance. I was told I had a mass in my brain and that I needed surgery as soon as possible to save my life. I later found out I had stage four brain cancer.

As much as I don’t remember of that day and the next, and the next…I remember very clearly waking up in that ambulance to see the EMT smiling and talking to me with a reassuring voice that stopped the panic before it could even begin. I remember the ER doctor holding my hand and sitting close while she told me about the beast in my brain. I remember the frightened looks on my kids faces as they walked in to see me before they left for home. I remember my husband’s face as he fought to remain calm while he asked all of the questions I would never have thought to ask. I remember the kindness of the nurses and doctors as I arrived at Stanford and settled in for a multitude of scans and tests while I waited for a craniotomy.

It seems a strange anniversary to celebrate, but here I am…alive and functioning. I’ve had some setbacks, but to think where I could be: the risks and potential disabilities as a side effect of brain surgery, the physical damage of chemo and radiation, the financial devastation if we didn’t have insurance, the psychological trauma if we didn’t have such loving friends and family… I could be dead. But I’m not.

As hard as this past year has been, I feel blessed to be here. To have the time to cherish my family, to teach my kids critical life skills and watch them do the things they love – like play guitar and dance, to hold my husband’s hand as we walk down the street, to read yet another great book. All things easy to take for granted when you’re not counting every day as one more chance.

The typical survival rate for someone with a Glioblastoma Multiforme is dismal. As my neurosurgeon told me ‘Now we know HOW you’re going to die, we just don’t know WHEN.’ Well, so far, I’m beating the worst of the odds. The beast is locked away for now and I have a team of doctors and specialists who are the best at what they do. I am lucky to live so close to Stanford and to know that my doctors work together to give me the best care possible. I am lucky to qualify for a clinical trial that just may help make my survival legendary – along with so many other people who will discover they have a GBM.

BUT – the options for brain tumor patients are terrifyingly few. I’ve been lucky so far, but so many have been lost because research into new treatments for brain tumors is dramatically underfunded. Brain tumors are mysterious and complex – just like the brain itself. Unlike so many other cancers, people don’t know about them until they or someone they know and love discovers they have one. Awareness is shockingly low.

There are no known causes and often people have no knowledge they have a tumor until it reaches a large size. I had no significant symptoms until I had a grand mal seizure in a pumpkin patch in front of my children and 300 or so strangers. There are 120 different types of tumors and depending on the location in the brain, even a benign tumor can be devastating to physical, cognitive or psychological abilities. Over 600,000 people in US are living with a primary brain tumor and over 28,000 children.

Help me celebrate this first of what I hope will be many survival anniversaries by donating to the National Brain Tumor Society – an organization committed to raising awareness, advocating for and funding research to help improve treatment options and increase the survival rates of brain tumor patients. My friends and family will be walking on October 26 in the Silicon Valley Brain Tumor Walk – join Team EveryDayLeft Right Left in our march to find a cure. Help us all to become legendary in our survival.

Thank you to everyone who has helped feed, drive, babysit, and care for my family in so many countless other ways this past year. You are loved and appreciated in ways we could never express.

Fear and Loathing in My Brain

After my little adventure a week and a half ago, I’m feeling a greater level of fear than I have in a while. I didn’t skip any of my medicine, I was feeling pretty great, celebrating a good MRI and yet I ended up having a ‘life threatening’ seizure episode.

I know the seizure event itself will knock me on my ass for a few days, but I’ve also increased my medication. It takes a while for my body to adjust to that as well. I find that I’m hyperconscious about every feeling, sensation, pain, or even thought I experience. Before my most recent episode, I was focused on speech, memory, mood as indicators that the tumor has returned. Now that I know that my expressive aphasia is a seizure and not an aura AND I’ve been instructed to use emergency meds to ward off a full blown seizure (or more terrifyingly, a series of life-threatening seizures) at the first sign of an aura, I’m ever aware of every sensation. Dizziness, nausea, sudden emotional changes, rising sense of cold… I may have had some of that before, but what got my attention was not being able to speak, and we’re aiming for whatever happens before that.

I know that lack of sleep and anxiety are risk factors for me, based on what we know at this point. But I feel like I’m starting over, trying to figure out my threshold for seizures – do I have other triggers that I’m not aware of? There are so many possibilities. Food additives, food sensitivities, smells, hormonal changes, certain sounds, barometric pressure changes, insulin levels, and so on. Then there are the possible auras: deja vu, numbness, tingling, sudden nausea, anxiety, fear, suddenly getting hot or cold, weakness, lightheadedness, strange smells or tastes, bright lights, blind spots, sensitivity to light or sounds, along with cognitive changes – like aphasia, just to name a few.

As a migraine sufferer – I’m experienced with the concept of triggers or early warning signs – but somehow the urgency to figure this out is greater…something about ‘potentially life-threatening’ I guess. Our trip to the Farmer’s Market was cut short yesterday because I ‘felt weird’ – a sense of cold rising up my body immediately before some panic and shaking set in. We’re a little gun shy, uncertain, and overly cautious, so Ativan was taken and we promptly went home. I’d be more confident about warning signs if I had full energy back and some sinus congestion didn’t make me a little wobbly.  I’m usually pretty in tune with my body, but this is a whole new set of symptoms, meanings, and risks.

We see an epileptologist tomorrow to learn more about what’s happening and what we can do to avoid another seizure. I have a feeling it won’t be a fully satisfying visit – questions unanswerable, mysteries of the brain, etc…  If he tells me I should wear a helmet, I’m going to be very disappointed.

 

In other news: We are already more than half way to our goal of $10k for the National Brain Tumor Society Silicon Valley Walk. I am feeling the love and support of so many friends and family. So, I’ve got that going for me, which is nice. Very, very nice.

Consider joining us or making a donation here:  EveryDayLeft Right Left

 

 

Everydayleft, Right, Left…

As we near the one year anniversary of my Brain Surprise, my family has decided to show their support and love by helping to raise funds for National Brain Tumor Society in our local Silicon Valley Brain Tumor Walk on October 26th. My husband and brother-in-law have started a team: EveryDayLeft, Right, Left…  Get it?

ABOUT NATIONAL BRAIN TUMOR SOCIETY

National Brain Tumor Society is fiercely committed to finding better treatments, and ultimately a cure, for people living with a brain tumor today and anyone who will be diagnosed tomorrow. This means effecting change in the system at all levels.

We have a rigorous and thoughtful agenda, integrating research and public policy to bridge critical gaps. Starting with discovery science, to clinical trial design and the development of new therapies, there are many opportunities to make improvements and speed the momentum of new findings.

National Brain Tumor Society is the largest brain tumor nonprofit organization in the country, hosting events, workshops, and scientific symposiums throughout the United States. Learn more at http://www.braintumor.org.

ABOUT BRAIN TUMORS
  • Each year over 210,000 people in the United States are diagnosed with a primary or metastatic brain tumor – that’s over 575 people every day.
  • Because brain tumors are located at the control center for thought, emotion, and movement, their effects on an individual’s physical and
    cognitive abilities can be devastating.
  • Among children under age 20, brain tumors are the most common form of solid tumor, and the second leading cause of cancer-related death, following leukemia.
  • Brain tumor research is underfunded. National Brain Tumor Society is the only organization that not only funds significant research, but also advocates for increased government funding.
  • No two brain tumors are alike. Prognosis, or expected outcome, is dependent on several factors including the type of tumor, location, response to treatment, an individual’s age, and overall health status.
  • There are more than 120 different types of brain tumors, making effective treatment very complicated.
If you’re local, consider joining us as we walk and raise awareness and desperately needed funding. If you’re not local, consider just spreading the word, helping us raise awareness and funding.   Just click here: EveryDayLeft Right Left 

Thank you for your support!

Karyn

My Name Is Karyn, I Have Brain Cancer

Ironically enough, given the public display of my inner most thoughts on this blog, I don’t wear my disease on my sleeve. I don’t walk up to people and say, “Hi, my name is Karyn and I have brain cancer.” I don’t have t-shirts that say “Ask me about my cancer!” or “My cancer is rarer than your cancer!” I don’t have a grey ribbon tattooed on my body. If people know and ask questions, I’ll happily answer them…clearly I have no issues talking about my experience. I’ll often point them to this blog, but I’m not exactly handing out cards to everyone I meet with the address and a snappy catch phrase like, “Everydayleft.com: My Cancer Adventures and My Hope for Semblance of Normalcy for As Long As Possible.”  Ok, that’s not very snappy, but you get my point.

Since I went into ‘hermit mode’ for many months, I can honestly say I don’t know EVERYONE who was told about my Brain Surprise. I wasn’t in charge of telling them and there was a lot of time and memory lapses between my first seizure and when I was back in the routine of day-to-day life. There are people who I used to see almost daily that are in the dark. All they know is that last year in October, I disappeared for a while and my mom showed up to drop off and pick up my kids and help in the classroom on occasion. Then I showed up again – wearing a hat, moving a little slower, 25 pounds lighter. Then I’d disappear again from time to time. Some people stopped talking to me, or if they talked to me it was brief and usually about the weather. In my mind, they’re thinking I’m some crazy bitch who’s clearly got a drug problem or had a nervous breakdown. And honestly, they’re not far off – I take a handful of drugs daily and one of them keeps me from having a nervous breakdown. But in reality, most of those people are more likely trying to mind their own business or are fellow introverts.

There are those occasional awkward moments where I’ve assumed someone was told directly or through the grapevine and I get an odd look when I mention visits to Stanford, chemo, seizures, memory or something else related to my brain. I realize I have to give a brief summary of my situation and then I try to move on to topics that aren’t about my cancer. I could talk for days about the nuances of drug side effects or waking up confused in an ambulance or what it feels like to have your skull opened up with a drill and saw, but it can ruin the mood of a perfectly good conversation.

The tricky thing is meeting new people – do you come right out and say ‘So you know, I had a brain tumor removed in October. I just finished my last round of chemo unless it comes back. Essentially, I have brain cancer and am fighting a daily battle to keep it locked away. Would you like a glass of wine?’ Or do you pretend your life is pretty normal and you haven’t got all this other stuff going on in the background?

One of my fellow brain tumor survivors has just started college and is blogging about her experience. It’s probably therapeutic for her, but it will also be a good resource for other teens who start college after brain surgery or learning to live with a tumor. For those of us lucky to have no truly visible signs of brain injury (because that’s essentially what a large mass in your head, surgery, and treatment create – brain injury), it can be a challenge to explain why you start struggling to find words after a long night, why you record lectures instead of writing all of your notes down in class, why you’re napping while everyone else is getting ready for a party. Catherine’s blog (and her advocacy for brain tumor awareness) is eloquent and informative. She highlights the challenge of having an invisible illness and deciding who to tell which information, all while striving to have a ‘normal’ college experience.

Some people who find out you have brain cancer, have/had a tumor, and may have a seizure at some point really don’t know what to do with that information. It scares them (and if it scares them, imagine how we felt when WE found out). It can change the way they see you. It can change the conversations you have. It can change the relationship they may have had with you if they hadn’t found out. It can leave them in awe (according to them) of how you handle it all. We all handle it the best way we can – and honestly, even with all we’ve been through and continue to deal with daily, we’re just happy to be here, to have the chance to be a mom, a friend, a college student and so much more. To have the opportunity to make new friends, fall in love, have new experiences or do the things we loved doing before we entered the surreal world of brain tumors. Honestly, we’re just happy to be alive.

Navigating awareness: Balancing the need to be ‘normal’ and keeping people you meet informed. Just another day in the adventures of brain cancer.

Brains: Fascinating Things

Even before I had brain cancer, I was intrigued by the brain’s endless wonders. Foreshadowing or Irony?

I’ve loved reading Oliver Sacks’ books because it’s fascinating what the brain is capable of – healing, compensating – and yet how delicate and complex it is when injured. The idea that you could look at your wife and think she’s a hat was an amazing concept. Having experienced Expressive Aphasia (even temporarily), the complexity, fragility and mysteries of the brain are even more enthralling.

When I took an art class at a local community college (16+ years ago), we had to make a piece using pointillism and parallel lines. I made this:

pointellism and parallel lines

When I started experimenting with needle felting to make pins for a friend’s charity fundraiser, I made this:

IMG_4094

An amazing local band (Corpus Callosum) was receiving a grant and I thought it would be cool to have brain pins in their honor. Then I found out the greatest needle felt artist EVER (Stephanie Metz) would be there and I wimped out. She was my inspiration for exploring the medium, but c’mon…my work looks like a Needle Felting FAIL compared to her work. Needle Felting takes INCREDIBLE patience and focus – which I don’t have. I’ll stick with the knit and felt method. 

I’ve always wanted a phrenology bust, like this:

phrenology_bust_L.N._Fowler_c._1870

Phrenology – while now obsolete and a little wack-a-doodle – was the precursor to neuroanatamy and psychology. Read about it – you’ll be amazed.  

I got my BA in Behavioral Sciences and my favorite class was Abnormal Psychology – where we learned about behavioral disorders and mental illness. What was so interesting to me is that mental illness can be inherited – I had never realized that before. The question is what inheritable brain function or chemical imbalance triggers the mental illness. Some mental illness can be a result of a subconscious means of coping with a traumatic experience – some believe that’s what triggers multiple personality disorders. People with mental illnesses can lead normal lives until WHAM! something triggers a switch in their brains and they’re schizophrenic. There are so many possible variations on ‘abnormal’ brain/behavior function – it just further illustrates that delicate, yet resilient complexity of the brain.  

It’s just that complexity that makes Brain Tumors so challenging. There is no known ’cause’ of brain tumors, there are so many types of brain tumors, it can strike anyone – young, old, man, woman – they are indiscriminate. The blood-brain barrier limits treatment options. The criticality of our brains (we can’t live without it) make surgery, radiation and drug therapy more risky – the location, depth, size; is it primary or metastatic; is it encapsulated or infiltrating. That variability require treatment options that cater to the individual in a way that perhaps other forms of cancer don’t. Brain Cancer Research is desperately underfunded in comparison with other forms of cancer. We’re running out of colors for awareness campaigns.  But what we really need is a cure.  

The Same, But Different – United We Stand With Our Tumors

When I was first diagnosed with brain cancer, lots of people suggested support groups. I cringed at the idea (based on my own avoidance of ‘joining’, rather than personal negative experience). But as I cringed, I simultaneously wondered what other people with brain cancer experienced. Entering the world of social media and starting this blog I’ve connected with people who are survivors, caregivers, advocates, and researchers. Through those connections I’ve met some amazing people and have learned a lot. But I feel like I still remain on the fringe. I’ve spent a lot of time thinking about why I’ve been so reluctant to join a support group – traditional or virtual – or become a more active advocate for brain tumor research funding.

I heard someone once describe attending a traditional brain cancer support group and realizing that they had NOTHING other than a tumor in common with anyone else in attendance. They got very little value out of the experience. Everyone was older, more debilitated, more pessimistic, more ‘terminal.’ Just…more.

As I read more about gliomas (mine was, and could be again, a Glioblastoma Multiforme – Giant Cell Variety. Super Size me!) and other types of brain tumors, I realized that every one of our experiences is unique to each of us. It depends on what kind of tumor we have/had. The number of different types of tumors is astonishing as is the wide range of people afflicted with them – brain tumors are broad and indiscriminate. Where our tumor is/was located in our brain determines what symptoms we had prior to diagnosis and which symptoms we still have or develop after surgery and/or treatment. Some of us suffer from seizures, some don’t. Some have minor to severe motor control challenges, with or without pain. Some have short-term memory loss. Some have complex and frustrating speech difficulties – unable to get the words from our minds to our mouths or our fingertips.

Our experience also depends on whether the surgeon was able to remove a percentage, all, or none of the tumor. What treatment program we’re on and how our bodies react to radiation, chemotherapy, and other medications plays a significant role in our experience. Two people can have EXACTLY the same treatment – doses and all – and have completely different side effects. A big factor is also what our general state of health was before diagnosis – in all manners of the word ‘health’, mental and physical, including our age at diagnosis or recurrence.

Our spiritual beliefs and social support systems and how they bolster our strength, or deplete it, significantly impacts our resilience and optimism. What information we were told, or found, about survival statistics and how effective we were at pushing those statistics into the dark recesses of our traumatized minds if our tumors were malignant and ‘advanced’. So many variables impact our individual experience that very few of us have multiple elements in common through those experiences.

Even with all of those differences, we all have one big thing in common – brain tumors. But we also have fear, anxiety, treatment plans, MRIs, and with any luck, hope.

If I spend too much time on the various social media outlets for brain tumor fighters – just browsing resources for information – I hear more stories of loss than of survival. Even knowing that I’m doing well and have a good chance of becoming legendary, I still know in the back of my mind that the tumor could come back and render me mute, make me incapable of making short-term memories, or kill me at any point. Each time I read a story of someone else who was surviving and leading a vibrant life suddenly losing their battle with the beast, I have to fight not to curl into a ball and cry for all the hope that was just sucked out of me. I need to hear stories of survival so that I continue to believe that long-term survival is possible and I WILL be legendary in my survival, that I WILL be around to see my children grow up.

When I think about support groups or being an active advocate for brain tumor research, I realize that we can all find something that helps to keep us moving forward, fighting the fight and finding camaraderie in our unique and common experiences. Yet, I’m still reluctant to fully join in. I’ve learned that I want to live as much of my life as possible with cancer being a sidebar rather than a headline – while I still can. I don’t want my brain tumor or the experiences of others or the fight for this drastically underfunded area of tumor/cancer research to take over my life. I want to put as much of my energy as I can into my children, my husband, my extended family, my friends and my pets. I’ll continue to write and speak to my experiences – my own version of therapy – and participate in the brain tumor community (the fact that there IS a community is still somewhat hard to absorb) on my own terms… for now. Everyone has to find what works for them and I know I’m not alone in my conflict to balance my desire to connect and my fear of being consumed by support groups, advocacy and social media. #btsm.

You Are What You Eat

<Soapbox Alert>

I eat. Every day. Sometimes I eat more, sometimes I eat less. Sometimes I eat only because I know I have to. I usually enjoy eating. I usually enjoy cooking. I’m a pretty good cook, in fact – or so I’m told.

I’m vegan. That means I don’t eat anything that comes from an animal. I’ve been vegan for a long time – since I was 22. My family is vegan – my husband and my children. My mom is an occasional vegan. My brother-in-law is vegan. I have many vegan and vegetarian friends. The truth is that sometimes there’s some animal product in our food (which sounds really gross when I put it that way.) Occasionally, we get some egg in a baked good. Caseine can be tricky to avoid. They hide ingredients derived from animals by calling them something unrecognizable. We eat honey – we don’t believe in bee oppression. But we only eat one kind of honey unless we can’t avoid it. Heitkam’s Honey makes all other honey seem like high fructose corn syrup. Craig didn’t pay me to say that, it’s just the truth. You can find Craig and his honey at the San Jose Flea Market every weekend.

Cancer can be a very effective diet (as in weight loss) plan. I don’t have the kind of cancer that eats away at my body. I didn’t spend my 6 week non-spa treatment vomiting. I did start eating way less (except when I was on steroids). I stopped drinking alcohol (except for an occasional glass of wine). I have small snacks between my small meals. I do a better job of drinking water throughout the day. I read labels and I eat lots of fresh fruits and veggies. I’ve lost weight – enough to need new clothes. While I wasn’t overweight, it was weight I probably needed to lose, so now I’m where I really should have been before. I’m trying hard not to lose more. Even so, I would not recommend cancer as a way to lose weight. Ever. It’s extreme and unnecessary.

While I’d highly recommend the vegan diet, it takes work and practice and diligence. It’s the one my doctors were happy to hear I already practiced. It’s the one my kids’ pediatrician puts her overweight patients on to get them back on a healthy track. You can read story after story about people who have lost a lot of weight when they went vegan. But it’s not really about the meat or the cheese or the eggs. It’s about eating healthier. It’s about moderation. It’s about being informed. It’s about knowing about the food you put in your body and your family’s bodies each day. There is proof of a link between diet and health – if not cancer. It doesn’t seem like rocket science when you really think about it. What you eat determines whether you have the nutrients your body needs to grow and thrive and function as intended.

There seems to be cancer everywhere around me. Maybe it’s like when you learn about a new car and then all of a sudden you see that car EVERYWHERE…you probably saw it before, you’re just looking for them now. BUT, ask yourself – what effect does genetically modified produce, factory farmed meat (full of hormones and antibiotics), produce full of pesticides or highly processed ‘food’ have on your body.

My diet couldn’t have prevented my kind of cancer, but it could prevent other kinds. So, climbing on to my soapbox, I’d suggest:  Eat more whole foods, less processed. Eat more green, less beige. Eat more fruit, less sugar. Cut out the soda, buy a re-usable water bottle and keep it filled and at your side. Don’t feel like you have to clean your plates when you eat out – some American portions could feed an entire family. Learn about where your food comes from. Understand what Organic and GMO really mean. Learn about food additives like artificial food coloring. Read labels and ask yourself if you want to eat that thing you can’t pronounce. Ask yourself why some chemicals, additives, and GMO are banned in other countries and not in the US.

I’m not saying you should be vegan, it’s not for everyone. But maybe read, learn, and make even small changes. I know it’s not easy to change the way you eat, but it can be done and it just may save your life or the life of someone you love.

Some resources I’d recommend:

100 Days of Real Food

Food, Inc.

The Non-GMO Project

The Vegetarian Resource Group

Dr. Weil

Dr. Sears

(Climbing down off of my soapbox. Happy eating!)

Love Is Love

I’m going to conjure up an alternative meaning to everydayleft today. I probably won’t do it often, but I think it’s an important day in our country. Some of you won’t agree with my position. I understand that we aren’t always going to agree on these things because of a number of reasons. We don’t always have to agree, but I hope that you continue to read and perhaps give this issue some thought.

As I was in the hospital preparing for and recovering from neurosurgery and learning that I had brain cancer, my husband was there by my side. Every possible minute. He asked the questions I couldn’t. He talked to the nurses and doctors about how I was feeling and whether I might need more pain medication. He regulated visitors when he knew I didn’t want or need the stress or confusion of company. He found a nurse who could wash the blood out of my hair before my children arrived for a visit after surgery. He held my hand and kept me reasonably calm when I needed reassurance in a scary situation – all while he was just as terrified and far more lucid and capable of processing what was going on.

All this and more, he was able to do because he was my husband – we’re legally married and heterosexual. I believe that because he was there, I stayed strong and was able to leave the hospital 2 days after brain surgery. He was my advocate, my strength, my anti-anxiety drug, my constant partner in an unexpected and unwanted adventure.

If my partner were a woman – if I were gay – she would not have had the same rights to be there holding my hand, advocating for my care, keeping me strong. She may have been less informed about what was going on and would have been more anxious as a result. I would have been more anxious as a result. My kids would have likely seen me with a terrifying amount of blood in my hair – scaring them even more than they already were as their mom lay in a hospital bed – seeming somewhat less than herself. The nurses may not have learned that Vicodin makes me hallucinate and, if they gave it to me for pain (they tried), could have presented ‘new symptoms’. They may have fed me food that made me ill – say cheese or milk. Maybe she could have been there, but it’s not a guaranteed right.

Legal marital status defines whether she could take Family Medical Leave to help care for me as any spouse would. It determines her rights to help make decisions about my medical care. My rights to medical insurance coverage are impacted. And that’s just in the hospital or during treatment. What about her rights if I die? Her rights as a parent of our children are currently defined on whether she is the biological parent. Her rights to survivor benefits are defined by our legal marital status – taxation, 401k rollover, social security, and more. Some say that domestic partner status is enough. It’s nowhere near enough.

It’s time for us to accept that Gay and Lesbian couples exist in our world. It’s time for us to give these couples the same rights as heterosexual spouses. It’s time for full equality.