Burying the lede

I know updates to EveryDayLeft are less than frequent and even less scheduled. This is my fault (husband reporter), and chiefly for two reasons:

1. Life — it won’t stop happening for even a minute; and

2. I really don’t want to speak for Karyn any more than necessary. She has always had a direct relationship with you wonderful folks and I don’t want to get in between you. What can I say? I’m just not the jealous type. Therefore, I’ve always felt a need to write as little as possible.

Still, when we hear from multiple people asking how Karyn is doing, and outright telling me it’s about damn time to write, I listen.

The latest for Karyn is that it’s been rough, to be honest. Headaches are have mercifully been less frequent (great news), but they do cluster around Avastin infusions. That’s ironic, considering Avastin is supposed to help with headaches that might be caused by intracranial pressure. A big issue of late is that energy has been low. Whereas a nasty headache would keep Karyn inside for much of the day, fatigue is now doing that. We walked around the block last weekend, and that was great, but it was the first long walk she’d taken in quite a while.

Dealing with background noise and visual stimuli has become more difficult, to the point where concentration on a conversation or task is easily broken by nearly anything in the environment: music; talking in another room; someone walking by; the dog scratching his ear; etc. It means trying to keep things quiet and still whenever possible. As you can imagine, the natural kinetic energy of two kids, a Jack Russell terrier and me (officially part of the problem) make “whenever possible” largely impossible.

On top of that, Karyn’s ability to communicate has been diminishing. For someone so articulate, witty and with such impressive writing skills, this is heartbreaking. She starts to say something, and the words get caught on their way out. In trying to push them out, the whole thought evaporates. Trying to write it down is no better. It’s like there’s massive construction on the communication pathways, and very few words can get passed the flagman before the sign gets turned to “Stop.”

This was the state of affairs leading into last week’s MRI, and that had us dreading the results. So — and this is me burying the lede — you can imagine our happy surprise when the doctor said the scan looked “really good.” He said it hadn’t changed much since the one in February, which means radiation did what we hoped it would: Tumor growth has, at least for now, stalled. Totes amazeballs, right?

It really is great news, but it left us without an explanation for the increase in symptoms. If the difficulties are caused by her radiation treatments (radiation is, after all, the gift that keeps on giving), they may be here for a while as Karyn’s brain heals. Her steroid dose also increased, and that slightly improved her language for a couple days, but it hasn’t lasted. “Frustrated” only begins to capture the feeling. Other “f” words also come to mind.

We’re staying in touch with her amazing team of doctors and wizards to discuss other options. Ritalin might be something that helps with fatigue and thus language. It’s always harder to communicate when exhausted. We are hopeful this is just another bump in a road that has already been pretty bumpy. Good thing Karyn is equipped with those heavy-duty badassery shocks.

Friend With a Brain Tumor?

Do you have a friend with a brain tumor? Do you have friends who have friends with a brain tumor? Do you have a family member, perhaps a distant cousin with a brain tumor? How about some random acquaintance at work, does he/she have a brain tumor? Does a close family member have a brain tumor? Do you have a brain tumor?

Every body knows someone who has or had cancer of some kind in other parts of their bodies – there are really too many out there. But chances are you know someone who’s experienced living with a brain tumor – primary or secondary. You may have known someone who died from brain cancer. Maybe you just heard about someone who was diagnosed with a brain tumor, but you really don’t understand what that means.

When you start to look around and listen to the rumblings, you and everyone around you has been touched by brain tumors/cancer in some way.

The 120 different types of brain tumors are indiscriminate of age, sex, ethnicity, race. There are no known causes. There is no known cure. There are rarely severe symptoms to prompt CAT scans or MRIs to identify that there’s a brain tumor growing. The first symptoms for most are a seizure, motor control issues or speech difficulties. Not all tumors are cancerous, but they all impact us since they’re in the control center of our bodies. Some tumors start off benign and then grow into a malignant tumor that tries to devour your brain. Regardless, treatment options are very limited.

In the 18 months since my own diagnosis with a brain tumor/cancer, I’ve learned of far too many acquaintances or acquaintances of acquaintances that have also been diagnosed with a brain tumor or cancer. Is it that the numbers are increasing or is it like that car phenomenon – when you ‘never’ see a car until you have a conversation with someone about said car and then you see them EVERYWHERE.

Hopefully, it’s not an increase in cases. It is disconcerting though when all of these other cases start appearing before your eyes once your own life has been touched by brain tumors/cancer. Those people fighting with their brains have always been there, we just haven’t noticed. It’s enough to make you feel a level of guilt for not knowing, for not doing more to support them and their families. Now that you understand what a brain tumor or brain cancer is capable of doing to you and your family, you feel guilt for not supporting people you never knew existed before you became a member of this horrible, elite society.

As is often the case when someone you know is first diagnosed with cancer, you don’t know what to do to help. You may not know how to start a conversation. You’re afraid to ask. You make so, so many assumptions about what’s happening. Or perhaps you ignore it altogether because it terrifies you.  When you see them and they don’t look sick, maybe you’re relieved that they’re ‘cured’ and don’t need to address their experience.

Having gone through the bad days, the REALLY bad days, and have been lucky enough to have many good days, I’d offer a few tips (from my perspective) on how to interact with someone diagnosed with brain cancer:

1. We will designate a family member who understands what’s happening to provide updates to those people who need to know. This person will NOT be the patient, their primary caretaker (in my case, my husband) since they are already over their heads with shock, research, information overload and serious decision-making. They’re dealing with fear, terror, worry, anger and healing. Please do not try to ‘go around’ this designated family member. Respect our privacy as we process how are lives have changed dramatically and figure out what to do next.

2. If you want to help, offer to have the kids over for play dates (not therapy, PLAY), drop off food – this is NOT the time to try that new recipe by the way, help take care of the animals left at home, make sure the garden stays alive, drop off movies or magazines… Notice these are all things that do NOT involve short or long visits. Everyone is overwhelmed and exhausted – having to ‘entertain’ will just make that worse (and don’t say you don’t expect to be entertained – when someone comes into your home, you naturally feel like you need to be a good host.)

3. Try not to start every interaction with ‘How are you?’ Because, really, you know. We’ve just received devastating news and have likely gone through brain surgery and are facing months on chemo and radiation. How would YOU feel? I understand that it’s a natural question and its well-intentioned. But if it’s asked too many times, it begins to feel like you should just make a recording and hit PLAY each time it’s asked.

4. Help take care of my caretaker – he’s scared out of his mind too. He’s trying to be my advocate, make huge decisions, keep it together emotionally, take care of our children, and be my body-guard – trying to keep people away while we process what’s happening as a couple. Once things calm down a little, take him out for a beer, LISTEN to him, go for a hike to look at a beautiful view, remind him to take care of himself, ask him if he needs anything (or better yet, make some suggestions on how you can help), let him cry without judgement or attempts to placate and remind him to shower and brush his teeth.

5. Remember that just because I have cancer, I’m still me. I have not regressed in age – don’t treat me as if I’m all of a sudden a child again. Condescension or offering theories on why I may have gotten cancer or suggesting things I might want to do in terms of treatment doesn’t help. At all. Not one little bit. Respect my decisions about treatment, period and treat me like the adult I am.

6. My cancer is not about you. If I don’t want to talk to you or see you, don’t take it personally. If I ask you to leave after a short visit (which all visits should be), don’t take it personally. Don’t tell me how devastated you are about my cancer. Don’t ask me about my cancer every time you see me – take my cues and ask me about every day things and tell me about your every day things.

7. Read about brain tumors/cancer. Understand the difference between them. Educate yourself and don’t assume that it’s a death sentence. Don’t tell me about all of those who’ve lost their battles, give me hope with the positive stories. However, when I’m doing well, don’t assume I’m ‘cured’. There is no cure for brain cancer. Even if I have no sign of a tumor at the moment, it will likely come back at some point. Help me fight to make sure it’s a long, long time from now. Don’t tell me it’s all going to be ok, because it is NOT ok. It will never be ok. Don’t pity me or others in similar circumstances. No one did this to us. Understand that I’m fighting, we’re fighting every day of our lives. Know that we’re all hoping that one day there WILL be a cure. Know that we’re all fighting the odds to try to live as long as we possibly can. Pray, send positive energy, and hope along with us.

8. Don’t be afraid that I’ll have a seizure at any moment. I’m taking medicine to control/prevent my seizure disorder. But ask what you should do if I happen to have one.

9. Brain tumor/cancer patients need the support of family and friends. But no one can really know what they’re going through better than another brain tumor/cancer patient. Ask that person you know, or the person you know who knows someone if they’d be willing to talk to that newly diagnosed individual. 99.9% of the time, we’ll say yes. We know what its like. We can offer a willing and patient ear, without judgement. We can explain what they might expect. We can refer them to resources that will help them learn more. We can discuss clinical trials and what to ask the doctors/coordinators. We can share what our own experience has been on trials. But most importantly, we can reassure them that they’re not alone.

Support groups aren’t for everyone. General support groups often don’t provide the support that brain tumor/cancer patients need. Specific brain tumor/cancer support groups will likely be better. Either way, know that some people will find a support group helpful, some will not.

10. Understand how my brain tumor/cancer has changed me, understand that even if my tumor is on hiatus, I still have a brain injury thanks to the neurosurgeon cutting out a piece of my brain. The impacts might be obvious or invisible. For me, I have short-term memory loss, I will stammer, I will forget common words or references – or use the wrong words. Have patience and don’t complete my sentences for me. Don’t make me feel bad if I tell you something for the third time this week. On occasion, I have slight balance issues. I can’t take anti-histamines, so pollen is more evil than usual, requiring me to stay inside some days. Once a month, I will walk around with an ice pack on my leg. I have not lost my mind or received a strange, repetitive injury. I’ve received my vaccine injections and am extremely itchy and ice helps.

11. Donate to the cause to support research. We’ll be walking every year to raise money for National Brain Tumor Society. Help us raise money and awareness. Walk with us to show your support and possibly get a free t-shirt for joining Team Every Day Left.

Brain tumors aren’t as uncommon as you think if you listen to the rumblings.

 

 

 

 

Today’s Beautiful Things

Cuddling with my son in the car while we waited for the first bell to ring (his sister starts 20 minutes before him)

Sunshine on my back and the cool winds of California winter/spring

The smell of flowers in bloom and the beauty of the blossoms filling the trees

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Watching birds gather nest materials for the first nest in our birdhouse (our new tenants) – my dad confirmed that they’re Oak Titmouses

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Seeing the finches eat through 3 bags of seed in less than 2 days

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Witnessing the squirrels risking their lives to come into the yard in search of nuts they buried in the fall (the dog has yet to catch one)

Wearing sandals as we approach a few days of summer-like temperatures

Finding so many signs that life is renewing and vibrant as we approach spring

Reminding myself that I’m still tumor free

Add to list: seeing the first butterflies of spring

Driving Me A Little Mad

There are some days where I really hate the fact that I can’t drive. This week, there are a few such days.

Monday, the dog managed to tear another toenail and needed to get to the vet. All of my usual kind & generous drivers were otherwise engaged. I was prepared to call a taxi – which seems ridiculous to me since I have a perfectly good car in the driveway and the keys to use it. My hero – as usual – became available just in time to drive us. THEN we found out he needed to be sedated and it would take an hour or longer. We went to lunch and did some early Christmas shopping while the dog was having the meanest kind of pedicure. While my designated driver didn’t have anywhere to be urgently, I still felt like a total moocher asking her to schlep me (and the dog) around.

Tuesday, I have a desperately needed appointment with my chiropractor. It’s cold and there’s rain in the forecast. I likely have to ride my bike to get there. This shows how desperate I am to have my pelvis and sacrum realigned. This is pain unrelated to my brain (hey, that rhymed!) Maybe I should just figure out the bus lines.

Wednesday, I go to Stanford for my vaccine shots. This process is hours long and since I can’t ride my bike to Stanford, someone has to take me. My hero/neighbor has volunteered for the task. She’s never taken me to these appointments (usually on kid duty), so she’s in for an experience. I’ll be stuck with needles, blood will be drawn, questionnaires will be completed, and waiting with slightly creepy hand ice packs will occur. She’s been present for 2 of my 3 seizure episodes, so hopefully this will be like seeing the lighter side of brain cancer.

Then we need to take the dog back to the vet to have his bandage removed and his wound checked. My husband can help with that task, however.

Thursday and Friday, there’s stuff I’m doing but I can’t remember what right now.

The ugly weather is beginning, so additional driving needs will begin to pile up. There will be occasions where I’ll have to suck it up and ride in the rain. I have a bright purple rain suit for camping, so if you think you see Barney the Dinosaur riding a bike down the street, it’s just me. Christmas vacation isn’t too far away either, so I’m currently accepting ideas on how to keep 2 kids who like to push each other’s buttons busy and having fun for 2 weeks – while at home.

Now that you all know when I’ll be out of the house this week and I’ve vented about my unwelcome dependency on others and hinted at my cabin fever…

The point is that not being able to drive sucks. BUT in the spirit of full disclosure, if my kids get sick or injured and need to go to the doctor or emergency room, I WILL drive with only minor hesitation about breaking the rules. In the meantime, I’ll continue to feel incredibly grateful for the kindness of my neighbors and friends for taking my kids to school every morning, taking me to do grocery shopping or run errands, driving me the vet for my dog with brittle nails, and for delivering me to my ever-present trips to Stanford. I’ll also continue to temper my feelings of guilt for asking so much of them. Fingers crossed that I’ll have driving privileges back in January. I figure if I make it through the stress of the holidays with no seizures, it’s proof that I’m invincible – or at least that my meds are working.

 

Happy MRI Day!

It was MRI day today.

A bright and early, first of the day MRI.

So early that my coffee hadn’t kicked in to give me time to really panic or get overly anxious.

While there’s always some anxiety before you get an MRI when you have a brain tumor, especially a GBM, for some reason I wasn’t particularly anxious before this one. I may have been too busy to worry. I may have felt too healthy to worry. I may have had fewer made-up symptoms to make me worry. Last night, as I was putting a load of laundry in, I thought I saw a spider out of the corner of my eye. I looked at the spot where I thought I saw it and there was nothing there. I had a moment of panic – one of the vague things I remember pre-discovery was ‘seeing’ things that weren’t there – mere glimpses out of the corner of my eye. Turns out this particular spider existed…well he did exist, until I squished him (while others in the family are believers in ‘catch & release’ method, I believe in squishing when it comes to spiders.) I sighed in relief, which may be the one and only time I was relieved to see a spider. This spider being real and not just a figment of my imagination provided me with indisputable proof that the tumor had not returned.

So I was not surprised that my MRI showed no changes this morning. The tumor has, in fact, not returned. I passed all of my neurological tests…again. I have at least 3 ideas on how to mess with them the next time I do these tests. Doctors and nurses LOVE it when patients mess with them while testing for signs of trouble in their neurological functions.

Timing of my appointments for the day allowed me to have a free chair massage, eat lunch, and shut my eyes while we waited. A good wireless connection allowed my husband to work with minor interruptions.

There’s nothing I like more than good news.

Your challenge of the day: Why did Peyton Manning get suggested as a Tag on this post?

But You Don’t LOOK Sick?!

When you don’t have visible scars, noticeable physical impairment, or speech impediments (and can still use $20 words like impediment), it’s hard for people to understand that you’re fighting an illness or trying to manage a health condition. Sometimes those of us fighting that illness can even forget. We call those ‘good days’.

Once our hair grows back and looks relatively normal, once the effects of our last seizure wear off and we can stop wearing sunglasses under fluorescent lights, once we acclimate to our new drugs or new doses (and our stammers and memory lapses ease up) we seem like everyone else walking around in the world.

But, as much as we wish we were, we aren’t just like everyone else. We have psychological scars and anxiety every day about having another seizure, tumors growing or coming back, having a brain bleed, or running out of treatment options. This is a kind of anxiety that ‘everyone else’ doesn’t experience. We have invisible effects of our tumors or our treatments – surgery, radiation, chemotherapy, anti-seizure medications. We can’t concentrate for longer than 5 minutes.  We struggle to read or write even simple things. Our impaired balance prevents us from riding a bike. We get exhausted when we try to do too much or are surrounded by too much stimulation – those definitions of ‘too much’ dramatically lower than pre-tumor definitions. We can no longer multi-task. We forget names we used to know, shopping lists of 3 items, to move laundry from the washer to the dryer, what we ate for breakfast (did I remember to eat breakfast?) We are less independent that we used to be. We can’t drive. We can’t swim alone. Our friends and family are always on alert for emergency situations or they hover because of their own, understandable worry. Everything can change in a heartbeat.

Most people will make assumptions about us, if they know we have brain tumors, brain cancer, or seizure disorders. They are surprised when we tell them our chemotherapy won’t make our hair fall out and we take it via pills rather than infusions. They assume that we’re going to die, and quickly. They assume brain tumors are a death sentence because that’s how they’re portrayed in the media. They are shocked to find out that there are 120 different types of tumors and many of them are benign. They are shocked that brain tumors are indiscriminate – they can strike children, teens, adults – male and female. That there is no known cause for ANY of those tumors. That our treatment options have changed very little in the last 20 years – largely because brain tumor research is dramatically underfunded.

Even if there are no outward signs – we are fighting a battle every day. We are hoping for better treatment options and a cure. We are hoping that more people will become aware of brain tumors and help us fight. That during Brain Tumor Awareness month (May, by the way), we’ll see sports teams, products, Celebrity PSAs, fundraising campaigns showing their support with the color grey – helping to spread information and increase awareness. For us, grey (though perhaps not as sexy or eye-catching) matters just as much as pink.

Help us make a change. A donation to The National Brain Tumor Society (or your country’s brain tumor association) would be a good start.

What Would You Want?

I often think about leaving my children behind, not at school…in life. I think about it and I’m terrified about it happening, of missing out on their lives, of them living those lives without a mother, feeling that loss at such a young age. That fear causes me to avoid doing anything to give them something to remember, to hold on to, to give them comfort when they need a mom – or a whole family – if I’m not there. If I write for them, record stories, put together photo albums or any of the other things I’ve heard suggested, what if it means I’m done? What if finishing that list of things triggers something?

When I was pregnant with my daughter, I was 4 days past her due date. It was 105 degrees outside and we had no air conditioning. I was desperate to get that baby out of me. I ate every spicy food we could get our hands on, I moved rocks in the back yard (we were going to start a landscaping project – it wasn’t just a random act), I walked a lot…pretty much anything that you hear can help spur on labor. I had a gardening project I was saving for after she was born and finally, I had run out of things to keep me busy so I just said ‘srew it’ and got started on it. It involved attaching galvanized containers to the fence and planting herbs in them. I had literally just finished planting the LAST herb (basil) and my water broke. Clearly, this is indisputable proof that if I’ve got planned projects and I just go ahead and finish them, big things will happen. Right?!

While I’m optimistic that I’ll be around for a while yet, I’m afraid that if I don’t write to them or do some of those things that will help them remember me and support them through their grief I may miss the chance and be too late. So, I have this conflict of finishing that list and triggering the worst OR finishing the list and feeling relief because it’s done if the worst should happen unexpectedly. While it may be a clear choice when written down like that, for some reason it’s one of my biggest struggles. It’s where my strength falters.

I don’t mean to be pessimistic, I think it’s more realistic. I will die – we all will at some point. I want my children to know they were everything to me, that I wouldn’t ever leave them if I had the choice. I want them to have memories as they grow, to have something that will wrap them in the warmth of a hug and make them feel safe, to have something that will remind them I’m there in those big moments in their lives – telling them all the things I would have said if I were standing in front of them as they graduate, marry, have children, save the world.

For those who have lost a parent, I don’t want to bring up feelings of loss that have already been worked through, but I want to get this right. In my connections in the cancer community (stupid cancer – there’s enough of it that we have a community), I’ve met young people who’ve lost their moms or dads to cancer. I would love to hear from some of them what helped with their grief, what did their parent leave behind to let them know they were loved beyond words, what helps them when they’re in need of a parent (advice, hugs… whatever) who is no longer around. What don’t you have that you wish you had? What would comfort you? What would help you move on from the grief with strength and confidence, knowing that parent is in your heart and with you always. What advice would you have for those of us at risk of leaving our children behind?

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.

Pity Party With More Drugs!

I’ve got some old drugs and now I’ve got some new drugs.

I’ve got brain cancer and now I’ve got potentially life threatening epilepsy. But as my epileptologist says, maybe it will go away in a few years. He’s an expert and has lots of experience (hence, ‘expert’) with these things, so I’ve no reason to doubt his prophecy. I’m willing to wait it out to see if he’s right.

As an extra buffer to stave off another status epilepticus episode, I’m now stepping into another anti-seizure medicine in addition to the maximum dosage of Keppra. I also have Ativan within reach at all times. Oh, and because he’s worried about the unborn child I’m NEVER going to create or have, he’s put me on Folic Acid…just in case – in spite of my assurances that it’s NEVER going to happen.

This new development in my neurological story has been a bit of a shock to the system. Not only do I have a high grade, aggressive tumor potentially lurking in the folds of my grey matter, but now I’ve got an escalation of my seizure status to ‘potentially life threatening.’ Oddly enough, I feel more infirmed now than I did when I was going through chemo and radiation. I mean, physically I feel better, but psychologically I feel more infirmed. I’ve got two neurological conditions that could kill me within a heartbeat. The number of drugs I take now, WITHOUT chemo, is daunting. I’m counting pills and making tick marks on a chart just to keep track of what I’ve taken.

Don’t get me wrong, if it keeps me alive, I’ll do it. But I’ve always been a bit of a hippy when it comes to putting toxins into my system. I’d LOVE to find an alternative, but I know I may not have the time to test out any alternatives. Having said that, has anyone tried neuro-acupuncture?

I’m slowly coming out of my pity party, so don’t fret. In spite of my lingering fear and adjusting to the new developments in my brain, it was a good day. I’ll be strong, courageous, and optimistic tomorrow. Tomorrow will be another good day.

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.

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