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.

The Irony

There are lots of things in this crazy world that are ironic. Just ask Alanis Marmoset (I know it’s Morissette, Marmoset is just more fun to say.) Rain on your wedding day and all that.

The irony in some of the treatments for a myriad of conditions are ridiculous. I guess that’s likely true for most medical treatments of one kind or another. Just listen to the legal warnings at the end of each commercial for the latest drug. Antidepressants that may cause thoughts of suicide. Erectile dysfunction drugs that may cause erections that won’t go away (yes, I said erection.) Blood pressure medicine that may increase your blood pressure or cause a heart attack. Any number of biologics carry multiple risks, but risks that so many are willing to take to manage an illness or relieve their pain.

With cancer, most of us willingly accept and take those risks and more – chemotherapy, radiation, experimental drugs.

Chemotherapy kills cells, attacking the cancer, but also attacks healthy cells. It makes you feel like hell. Perhaps because of this effect, it carries the risk of serious infection and potential development of unrelated cancers. Irony.

Radiation treatment specifically for brain tumors – targeted or more broadly focused – carries the risk of brain swelling, brain damage, OR brain tumors. Irony.

Anti-seizure medication or combinations of medicines carry the risk of triggering seizures. Irony

Some drugs – like antibiotics, meant to rid your body of potentially deadly bacteria, can reduce seizure thresholds and trigger a seizure. With a history of status epilepticus, it might kill you. Irony.

Experimental drugs carry a series of risks and depending on the phase of the trial, some of those risks are unknown – hence, why they’re in trial. These drugs can trigger new illnesses, potential fatal reaction or extend the impact of the disease you’re trying to fight. Irony.

Most of us are willing to take the risk, but the irony is not lost on us. While we battle a disease that is trying to kill us, we risk possible death and do so willingly. Ironic indeed.

The trick is knowing what to ask your doctors about the risks when you’re prescribed medicines or begin a new treatment, take the time to consult with your pharmacist any time you start a new medication, and read those long lists of potential side effects for the medications you’re taking to understand any risks and contraindications. Essentially, be informed and don’t assume that what you’re prescribed is safe – especially if you have multiple doctors – as we all seem to in the world of cancer. Carry around a list of your medications – with doses – so you can make sure you don’t forget any of them when you are discussing new treatments. Don’t become a cautionary tale and get added to the next Alanis Marmoset song about the many ironies in life.

 

As an aside – there are thousands of plants in the Amazon jungles alone that can be used to treat a wide range of illness and disease – including cancers – but in the name of ‘progress’, those forests and all they offer the world are being destroyed at incredible rates. Not only are we destroying the homes of the indigenous people, we’re destroying potential sources of a cure. Irony or ignorance?

 

 

I’m Fighting a Battle – No Really I Am

I’ve heard a lot lately about concerns in using words like ‘fight’, ‘battle’, ‘win’, ‘lose’ because they are battle references and some take offense to them being used to describe their experience living with and [unknown term] cancer. They feel that ‘survivor’ is a better term. I’m not sure how that works actually while you’re going through treatment and doing all you can to rid yourself of this disease.

This is a quote from Kate Granger in a recent Guardian article that sums up the argument fairly well:

As a cancer patient who will die in the relatively near future, I believe rather that instead of reaching for the traditional battle language, [life] is about living as well as possible, coping, acceptance, gentle positivity, setting short-term, achievable goals, and drawing on support from those closest to you.

Kate Granger

It implies that if I use the words ‘fight’ or ‘battle’ that I’m not living as well as possible, coping, accepting, being positive, or drawing on the support from those closest to me. I call bull shit. My short-term, achievable goals are to get through my next MRI with flying colors and teach my kids to be kind to each other and everyone around them.

I can do all of those things to help me become a ‘survivor’, but let’s be honest – I’m battling cancer. I’m fighting against the malignant cells that mysteriously popped up in my brain. They are attacking my body and I don’t accept them as a symbiotic partner in my life. I want them gone, never to return again. I do not welcome them – I consider them trespassers and they should be prosecuted to the full extent of all treatment options available. I will fight them to my last breath. It IS a battle. Perhaps it’s a battle of wits, a staring contest, or a thumb war, but it’s definitely a battle. Saying that ‘battle language’ is negative and does us a disservice as cancer patients is ridiculous (IMHO.) I don’t deserve to have cancer, nor does any one else who has it. We have a right to be angry. It doesn’t mean we’re not hopeful, positive, living life as well as we can, or drawing on the love, prayers, and support of our friends and family.

I’m angry. I’m hopeful. I’m positive. It doesn’t mean I’m not fighting a battle. It doesn’t mean I can’t beat this cancer. A little anger is healthy (letting it fester and prevent you from being positive is not so healthy.) I may not beat this, but I’m sure going to fight like hell as it tries to take me down. Yet, I’m living every day with love, joy and gratefulness for the moments I’ve got left with my family and friends.

I’m not sure there are better terms to use under the circumstances. ‘Survivor’ is what we all strive to be and yes, if it hasn’t killed us yet, we ARE survivors. But until someone comes up with a better option, I will battle on. I will gather my forces and protect the castle (‘I fart in your general direction’.) I will raise my symbolic weapons in the form of chemotherapy, radiation and clinical trials. I will not raise the white flag, I will continue to strive for a ‘conscious uncoupling’ from my cancer in any way possible.

The battle rages on.

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?

Mission: Almost Normal Childhood

Having young children, we’re always very conscious of what we say around them. We offer opportunities for them to talk and they have total freedom to ask any questions they want. We try to keep their day-to-day lives as normal as possible – homework, chores, lessons, etc. We don’t want them to worry or spend their days being anxious, we want them to live life and experience their childhood without fear of what might happen, what if… WE don’t even know, so how would you explain that uncertainty to a child?

They are pretty typical kids and siblings. They resist doing homework. They have messy rooms and leave their stuff all over the house.  They pester us to watch TV. They use their imaginations and create music, art, and cool dance moves. They fight and bicker about pretty much anything. They look out for each other and sneak in acts of love and kindness. They get silly and loud. They like to cuddle and read together. They throw fits when they can’t find the ‘right’ pants to wear on a cold morning. Pretty normal kid stuff.

But they’ve still seen their mom have seizures and be taken away in an ambulance. They’ve still seen their mom in the hospital with ~35 stitches in her scalp. They’ve seen their mom suffer through chemo and radiation, unable (or unwilling) to get out of bed some days. They know I have brain cancer and that it’s serious, though we’ve avoided discussing the ultimate risk of death. They’ve seen me going to Stanford for frequent appointments and taking a handful of medicine twice each day. They have gotten a little too comfortable with my memory loss and have learned to play it in their favor – well, at least the tween has tried.

While they lead pretty ‘normal’ lives, we can see the trauma and anxiety come through from time to time. If I pause in the middle of a sentence, I get a rapid, ‘Mom, are you ok?’ If I cough while I’m reading a story, I get a ‘Mom, are you ok?’ If I get lost in a thought, I get a close look-over and a ‘Mom, are you ok?’ My daughter often double checks that I’ve taken my medicine (after 2 alarms and text reminder have already occurred.) Occasionally, my son will tell me ‘that I’m going to live a very long time’ in our bedtime cuddling. I catch the hidden glances in my direction any time they sense something is out of the ordinary.

Unfortunately, a few people have made comments like ‘everyone with cancer dies’, which WE know is not true. Those who make these comments don’t think of the impact those four words can have since I’m not THEIR mom and they’ve not experienced what our kids have lived through in the last year. But to our 6 and 10-year-old it’s a scary thing to hear. It makes the fearful ‘what if’ come to their minds and we have to spend a few days talking them down from the fear and anxiety – to get them back to spending more of their time just being kids.

The brain cancer is perhaps a little harder for them to grasp, because it’s less visible. But the seizures are VERY real and VERY visible and VERY scary. Being able to talk about it helps, but sometimes it’s easier if you can write it down. This blog has been great therapy for me, and since my daughter also loves to write, I asked her if she’d like to write something about what it’s like to have a mom with brain cancer. She immediately said ‘yes.’ This is what she wrote:

It is sort of scary to have a mom who can have a seizure, but knowing what to do and that we have neighbors that will help makes it a lot less scary. It is annoying that we have to walk a lot of places, like soccer practice and home from school. I am still a little scared when I hear a siren. Now she has a special medicine or as I like to call it ‘miracle medicine’.

That ‘miracle medicine’ is Ativan. I got a prescription after my last seizure, which was a status epilepticus. I’m supposed to take it if I seize in an attempt to avoid another life threatening episode. We can only hope that the secondary seizure medicine I now take will work, and that potential emergency doesn’t happen.

A fire truck and ambulance came into the neighborhood last night after bed time. She called out for me and I had to reassure her that I was fine and they weren’t coming for me.

I feel like we’re doing a pretty good job of keeping our kids’ lives on track and ‘normal.’ We don’t coddle them or excuse any bad behavior, but it’s important to remember that they feel anxious and have experienced trauma too. Sometimes a little more patience and an extra hug are needed. Then they need to go finish their homework and clean their rooms, just like any other kid.

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.

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

Mesothelioma Awareness Day!

Cancer is an indiscriminate bitch. It can strike the young, the old, the in-between. It can disable, it can kill, it can strengthen in the long run. It can attack any part of your body – spreading like a weed or concentrate all of it’s focus in one little area. Some cancers can strike without warning, some have only subtle hints as they slowly build. We don’t know what causes some cancers, but we know exactly what causes others.  Mesothelioma is one of those we know. Today is Mesothelioma Awareness Day. I don’t personally have Mesothelioma (that I know of), but I and everyone I know have lived with the risk of exposure thanks to asbestos in our homes and workplaces.

While we don’t know the causes of brain cancer, we do know what causes this cancer and in the spirit of Awareness, I want to share this. Read it. Learn. Share.

Maybe some day we’ll know as much about Brain Cancer.