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.

Chemo Experience 101

Just coming out of my latest chemo experience, I thought I’d share a little about what I went through on the last few days (3-7, by my last account). The last time I mentioned it, I was beyond day 7 and I felt super awesome! I’m a liar. It sucks.

I was nauseous the entire time (days 3-7 were worst). Smells were awful, I could barely enter the kitchen. My kids were fantastic, but ended up watching more TV than they do in a ‘normal’ month. I ate because I had to so I didn’t throw up. Vitamin water is REALLY hard to open without the assistance of 2 smaller children taking turns after my initial, unsuccessful attempt. I was exhausted and needed to nap, no debating.

Maybe this time was different from most because I traveled, I stayed up until midnight on day 3-4 (Taylor Swift concert with 3 kids – lots of bright, flashing lights, light rail experience both ways), I had to get up at o’dark thirty to get to an Avistan infusion on day 6, I was finishing my lady time (TMI, I know). But it all worked together to drive my chemo experience into the deep dark underground of hell.

I know there are people who can do this without skipping a beat. One of my daughter’s teachers is fighting breast cancer and stated, ‘I get my infusions on Tuesday, so I might be tired the rest of the week.’ WHAT?! I have 7 days of hell each month and I complain. I’m a wimp. I’m alive, but a wimp. I’m a stay-at-home mom who’s a wimp. She’s a working TEACHER and she’s got balls. I bow to her strength and perseverance in light of what she’s fighting with amazing courage and ballage. And she’ll likely lose her hair.

So, I’ll complain in my wimpiness and then I’ll move on.

Moving on now.

Seizures! The Latest Trend!

I don’t think I’ve ever written specifically about what its like to have a seizure. I figured I’d satisfy your curiosity, since I had yet another seizure on Monday night.

When I first started getting seizures, I had this long period between my first seizure (conscious, but with expressive aphasia) and the big generalized seizure, another way to say Grand Frickin’ Mal or tonic-clonic seizure.

Expressive aphasia is a very strange thing to experience. The first time, I could say some things, but not others. I knew what I wanted to say, but it wouldn’t come out of my mouth. Eventually, my mind was thinking one thing but my fingers were doing something else entirely. I was filling out paperwork at the ER and I wrote my maiden name twice. I knew it was wrong, but I couldn’t get my fingers to write my married name. I don’t remember anything after that. The doctors were concerned I was having a stroke, so they took me right in (remember that little trick). Apparently they asked me if I knew my husband. I nodded. They asked me to write his name. I wrote gibberish. Then I had a generalized seizure. That whole episode – expressive aphasia to generalized seizure probably took 2 hours or so.

A generalized (or Grand Mal or tonic-clonic) seizure is the kind that knocks you unconscious. You shake around for about a minute, clench your teeth – usually biting your tongue or your cheeks, and wake up slowly – ever so slowly – trying to get your thoughts back in order. For me, I’m thinking clearly again and chatting with the EMT normally about the time we’re 5 minutes or so away from the ER at Stanford.

One of my seizure episodes was a status epilepticus – a fancy way to say I had repeated seizures without regaining consciousness between each one. If these aren’t brought under control, it could lead to brain damage or death. Which is a scary wake up call. ‘The brain tumor may not kill you, but this acquired disorder might!’ After this episode my medicine was changed (adding Lamictal) and I got emergency meds (Ativan) to help stop the seizures from continuing past the first one.

Since that status epilepticus experience, my expressive aphasia period (also a seizure, in case you missed that the first time) has gotten shorter and shorter. I now have a little fuzzy moment where I feel like a conversation is on repeat, my vision goes kind of wonky (the official term) and then I’m out cold. Not enough time for me to get Ativan in my own mouth.

I went for nearly a year and a half without a seizure of any kind. That record was broken in February and once more again on Monday. Ativan (placed in my mouth by my husband) did what it was supposed to do. The ER doctors (consulting with the neurologists) increased my medicine again – taking into account when I’m having my seizures (right around dinner time). They’re calling them break through seizures, not progression, so that’s good…I think. No one wants to leave me alone and frankly I can’t blame them. I’m not sure how that’ll work in the long-term, but we’ll figure it out. Our dog is lovely, but I’m pretty sure he can’t get Ativan in my mouth OR call 911. No service dog skills at all.

My mom is here now helping to drive us about and run much-needed errands (especially needed after our youngest got a nasty stomach bug last night). Her help came at just the right time, but eventually she’ll need to go home.

Seizures come in many sizes, shapes, and colors. Some are minor and some are not so minor. I’ve talked to people who have many a day, but they’re not the kind that knock you unconscious. I know there are many who have generalized seizures on a daily basis, which has got to be a living hell. Some of them are related to tumors or brain damage as a result of tumors/surgery and some aren’t related at all. But I do know that seizures are stupid however they’re delivered to your doorstep.

If anyone is looking for a part-time job babysitting a grown woman , let me know.

Battle Wounds

There are doctor visits where I come away with wounds. Slightly less dramatic than an arterial line bruise that lasts weeks or a craniotomy scar, but that experience was a while ago. Wounds these days usually occur when my veins don’t cooperate. They might also include some emotional wounds, but those aren’t visible to the naked eye.

So, as I mentioned in my last post, I was going in for an MRI last Friday. I’ve gotten to the point where I can fill out the necessary pre-MRI form without reading the long list of questions about potential ailments and metal implants. I should have a stamp made for my drug allergies. When they ask if I’ve had previous scans, I say ‘too many to count’. When they ask the date of my last scan, I say ‘8 weeks ago’ and ‘8 weeks before that’. I’ve stopped trying to remember dates. Clearly I’m not a fan of having to fill out this form repeatedly. And I get to do it again in a month! Yippee!

My MRIs require contrast, so each one requires an IV. Sometimes the nurse gets lucky, sometimes not. This last one fell into the ‘sometimes not’ category. Two nurses, two failed attempts and one success sticking my tiny, scarred veins with a tube to insert some strange chemical into my veins while they’re scanning my brain. MRI rooms are ALWAYS freezing cold, warm blankets are a must – never turn the offer down. They also help keep you warm if you’re prone to napping during the scan. I am. I ask them to refrain from talking to me as each section of the scan experience is about to begin so that I can have a little snooze.

They tell me my results will be available in one to two business days. I say, ‘I’ll see them at 11:00 today. Thank you, have a great day. See you in a month.’ This isn’t my first time to the rodeo.

First bruise begins.

The waiting begins to see my neuro-oncologist. He’s usually over scheduled, rooms are overbooked, and he actually spends time with his patients if they need his time or he’s got news for them – usually bad news. I typically don’t mind waiting since I’ve been hearing nothing but good news for so long, but this time I was anxious. There have been signs of inflammation OR a tumor making its comeback. My MRIs are more frequent. We’ve discussed our approach of ‘waiting/monitoring’ since whatever it is has been growing slowly (GBMs are reported to double in size every two weeks) bringing the tumor regrowth theory into question. We’ve discussed our options in a distant, ‘don’t need to do anything now’ manner. But when something other than an empty spot and scarring shows up, the anxiety level raises slightly. This MRI showed that  questionable area growing…maybe. We don’t know what it is, BUT all of a sudden our discussions about potential next steps became more serious. More like we needed to consider which of those options we would like to pursue and what it would mean to my participation in the vaccine trial.

The invisible mental wound begins.

I went across the street for my vaccine shots. I have my vitals taken for the second time in the period of an hour. My temperature was the same, in case you were wondering. In these visits they have to draw blood for the study’s purposes. I don’t know, honestly, which test they’re running since I don’t get the results. When I get a nurse who knows my veins and their temperamental ways, it usually only takes one attempt. One and done. But this time, despite the success, my vein showed its displeasure.

Second bruise begins.

My vaccine shots involve a rotation between my right and left legs. This was my right leg’s turn. A circle is drawn with a Sharpie. No bunny ears or flower additions this time. My regular team of nurses and coordinators had the day off. Then four intradermal shots are injected around that boring, unadorned circle. They swell, turn pink and become itchy almost immediately. That lasts for a few days.

The vaccine ‘wound’ begins.

This has become such a regular MRI/vaccine day for me, that I’m largely unfazed by it all. This was slightly different given the wounds of the day. I’m hoping I can go back to unfazed on May 1st. But, I understand that given my survival thus far, I may be on borrowed time. Until I survive through the next steps, whatever they may be. Then I’ll go back to being unfazed.

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Seizure Disorder – My Rules for Daily Life

First – let me be clear that I understand Seizure Disorders are serious business. They change people’s lives, restrict certain levels of independence, require daily medicine that have side effects, and in some cases can be deadly. I have the risk of death myself thanks to the new lesions and screwed up electrical connections in my brain. BUT sometimes you have to laugh and poke some fun at your situation and let’s face it, those of you with seizure disorders will likely relate. If we don’t laugh, we risk falling into a pit of despair (eh, see that Princess Bride reference there? Don’t fret, there will be more.)

Daily medicine – keeping track of when and whether you’ve taken your medicine. This includes using medicine organizers, alarms, back up alarms, texts from loved ones, and perhaps more. We also keep any emergency medicine on our person at all times – educating loved ones about when and how to shove it in our gobs (chocolate coating not necessary.) We remind our friends and teach our children that calling 911 asap is essential if we’re likely to have a status epilepticus experience. This may only be necessary for those of us who have tonic-clonic (or grand mal) seizures.

Traveling can be stressful – making reservations, packing, arranging care for your pets and/or children, and beginning to adjust your medicine timing if you’re changing time zones on your trip. One thing that most of us with seizure disorders do (I assume) is research where the nearest hospital is at our destination, just in case. Booking accommodations near the hospital might be a little excessive, but somehow it doesn’t seem weird to me.

To tell or not to tell, that is the question. It’s always a challenge deciding who you tell and what you tell them. I volunteer at my youngest child’s school – should I tell the office staff, the librarian, and/or my child’s teacher? And if so, how much do I tell them?  Education is always a good thing, but I haven’t had a seizure in a year. I wear a medical bracelet, but let’s face it, there’s only so much information you can put on that little ID Tag. If you tell, you may have to deal with the nervous anticipation, the sideways glances, the pity (in some cases), and the eggshells they’ll be walking on around you. The Fire Swamp is tricky to navigate.

Phones – everyone has a cell phone these days – well there are some hold outs, but generally everyone has a cell phone. I’ve been instructed explicitly by my husband that my cell phone is to be charged, NOT on silent mode, and on my person at all times. Not being able to reach me causes fear and panic and that’s no fun for anyone – especially my husband (I can only say ‘as you wish’.) Portable charging devices are a nice addition to this plan.

Eating, snacking, hydration, and sleep are all critical for me to avoid a seizure incident. Different people have different triggers, so knowing your triggers is important. Yes, I carry a snack and a bottle of water with me everywhere. Yes, I have no problem taking naps, sometimes 2 naps if I feel tired (get some rest. If you haven’t got your health, then you haven’t got anything.) Yes, I eat regular meals. I think these things are generally common for all of us with seizure disorders. Anxiety can also be a trigger and I always wonder if you can worry to the point where you actually trigger a seizure while you’re worrying about having a seizure…

Strobe lights are bad. Very bad. Some people think they’re cool, but these people clearly don’t have seizures. Come to think of it, any flashy lights are bad. Just don’t go there, it’s too risky. Take the time to enjoy the view (outside), have a cup of coffee, read a book or chat with a stranger while your friends go into the flashy light experience.

A simple swim is no longer a solo activity. Swimming now requires the buddy system. Pick someone you like. Think twice about skinny dipping. Just sayin’…don’t try to go into the Fire Swamp alone, that requires teamwork.

Driving is a privilege. Don’t abuse that privilege. IF you feel wonky, don’t drive. If you’ve had a seizure, be prepared to implement plan b, c, d, or e while you wait for the 3 – 6 months without a seizure (fingers crossed) before you can drive again. You may have your license suspended for longer or revoked altogether, so have a plan to get your kids to and from school. Learn your local bus routes, get your bike all tuned up, tag along with your neighbors/friends while they run errands, and get used to walking. Not driving is inconvenient, but its better than being dead or even mostly dead.

Since I discovered I had a seizure disorder (by having seizures) I’ve become WAY more conscious of my underwear decisions. At the risk of over sharing, I follow that advice ‘Wear clean underwear just in case you have an accident.’ I tend to lean more toward the standard chonies rather than the fancy, lacy kind. I know if I land myself in the hospital, I’ll end up without my underpants and those nurses who remove them have seen it ALL before…but somehow I like to know I won’t be embarrassed by the condition of my underpants (‘I just want you to feel you’re doing well. I hate for people to die embarrassed’.) In addition, if aliens come down to add to their collection of underpants, I’d like to offer a nice option (this is not a reference from The Princess Bride, but it’s still funny. Well, I think it’s funny.)

Note: if you’ve not yet seen or read The Princess Bride, do so immediately.

The Benefits Of A Brain Tumor

First, let me assure you that I’ve not gone crazy. But I was talking to a few people about acquaintances who have had their primary cancer spread to other parts of their bodies (including their brains) and I started thinking about the finer qualities of having a primary brain tumor. Here are my top ten benefits of a brain tumor:

1. A primary brain tumor doesn’t spread. It only attacks the brain. It may come back time and time again, but it won’t move  to your lungs, liver, bones, etc… Other cancers may develop outside your brain, but it won’t be because of your brain tumor.

2. The chemotherapy for a primary brain tumor comes in the form of a pill. This means that there are no daily trips for hours of infusion therapy. You still feel like a truck has hit you, but you don’t need to leave the comfort of your own toilet AND you won’t lose your hair! Thank goodness for the blood-brain barrier, right?

3. Radiation treatment however, WILL cause you to lose your hair – giving you multiple opportunities to explain and make up wacky stories about the strange baldness in random places on your head. For instance, ‘My cat has a fondness for hair.’

4. With radiation treatment, you will receive a free mask. You can use it for your latest Super Hero costume!

5. Fear of needles? Hah! Not any more. You’ll now watch with interest as they struggle to find a vein that will cooperate. You’ll barely flinch as the dig around with that needle to find a clear path to your blood. You’ll be given an honorary certificate in phlebotomy.

6. You can use your craniotomy scar to freak the hell out of people. For instance, apply some fake blood before you head to the grocery store and act like you don’t notice. When someone asks if you’re ok, you can look straight into their eyes and say, ‘Yes, of course. Why do you ask?’

7. You can leverage people’s general lack of knowledge about brain tumors and shock them with the facts, watching them trying to process the immensity of the problem and desperately search for the ‘right’ thing to say. Tell them that THEY can do something to help by spreading the word and donate to National Brain Tumor Society.

8. You can live in constant suspense, like Clarice in Silence of the Lambs. Will she survive? Will someone come to save her, just in time? Will she put lotion on her skin? A monster is lurking and can strike at any moment. Fun!

9. Multiple experiences in an MRI machine will act like immersion therapy and cure you of any claustrophobia you may have had prior to getting a brain tumor. You’ll also develop incredible self-discipline, learning to keep your eyes closed for extended periods, fighting the urge to open them, just for a peek. You’ll also learn to make itches disappear right before your closed eyes!

10. You can point out to people the irony that radiation treatment for your brain tumor MAY cause brain tumors. Then laugh hysterically.

See? Having a brain tumor isn’t ALL that bad. However, I’d still dissuade you from getting one.

There really aren’t any benefits, but sometimes you need to laugh and appreciate the ridiculousness of the experience.

 

Improvisation

Improvisation is one of those words that make less sense the more you say it. Go ahead and give it a try.

I had my ‘vaccine’ shots yesterday and I’ve got a super itchy leg. When that itchy is below the pocket line, it forces me to improvise. Otherwise I’d have to walk around holding an ice pack on my leg or sit on the couch all day watching movies. As inviting as that second option sounds, I actually have things to do.

So, I made up this solution. It’s not very clever or fancy and it doesn’t even make me feel like I might’ve been in an ’80’s rock band and am reliving the old days. But it works.

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Feel free to try it for yourself in your time of itch relief need.

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.

 

I Want To Ride My Bicycle…

…I want to ride my bike. – Queen

To be honest, I’d rather drive. But alas, I am forbidden. So I must ride my bike, walk, or rely on the generosity of others and their vehicles. The weather has been excellent and my neighbors are very, very kind, so it hasn’t been an issue yet.

I bought a new helmet since my old one was about 15 years old and I was told it wouldn’t protect my melon. I figured my melon’s been through enough already and with the seizure risk looming overhead, it was worth the money (and it’s WAY cooler than my old one.) I got baskets (folding, no less) for the back of my bike, so that I can carry groceries, kids’ backpacks, scooters, things like that. My neighbor kindly drives them to school with her daughter, so morning’s are covered. Getting them back home, I’d like to manage on my own as much as possible, though. My kids have bikes, but they don’t fit in my super awesome baskets, unfortunately. Folded scooters and helmets do fit, but if you’ve ever ridden a scooter on a sidewalk for more than a mile, you’ll understand that it’s not their first choice of transportation home from school. So we walk, which makes the dog happy since I take him along. The kids happiness when they find out we’re walking depends on the day. I’ve determined the ratio of whining is directly related to the temperature – hot or cold. Maybe next week we’ll try riding bikes to school in the morning so they’ll have bikes there to ride home…but that would require all of us to get up earlier and 2 out of 3 of us are NOT morning people.

If we were in the southern hemisphere, the timing would be great – we’d be going into spring. However, we, up here in the northern hemisphere, are going into fall and winter during my ‘no driving’ period. So, when the weather turns bad, which it will, I’ll be even less independent or we’ll be cold and wet on a regular basis.

I understand why I can’t drive and I have no qualms with it, other than it limiting my independence. Also, it ultimately increases the impact of my ‘situation’ on my husband, family, and friends, because they have to help do more. I hate, hate, hate being so dependent on others for every day things. I like being able to run to the store for ‘that thing’ I need to finish a project/meal or to get laundry soap when I run out in the middle of laundry day or take my kids to their dentist appointments. My kids have after school activities and while we’ve managed to work out rides and schedules pretty well, there’s no way we could do more. When soccer season and on-campus activities end in the next few weeks, we’ll have to re-evaluate what we can coordinate.

I know that there are thousands of people who manage to get around without a car – shuttling themselves and their kids to and from places on a bus, train, taxi, bikes or feet. But when you’re used to that independence having a car offers and it’s taken away, it’s tough. I know…’poor me.’ I will hopefully get my driving privileges back in a few months, but until then I’ll suck it up and ask for help when I can’t get it done on 2 wheels or 2 feet. If brain cancer and seizures have taught me anything, it’s that sometimes you just need to be grateful you’re around to ride your bike or walk your kids home from school.