Progress Report: 11-1-15

A little late, I know.

I had a follow up MRI on the 14th. As expected, the good news was too good. I guess that’s ‘as expected’ from me, really. There is some follow up growth. Not terrible growth, but some growth.

The doctor decided to take me off the Temodar – ‘to save my bone marrow’ – but continue the Avistan with a follow up MRI in 5 weeks. That takes me from every 3 months to every 5 weeks.

We did have another National Brain Tumor Society walk again this year. We were the number one fundraiser for the third year in a row. Woo Hoo! Thank you to all of you who donated to our cause. It means a lot to help this organization reach their goals.

I did make some new friends this year. Josh, who I met through our sons playing soccer together, is writing his own blog at oligojourney.blogspot.com. You should go check it out to see what someone else fighting a brain tumor is going through.

I had a few setbacks – explained, I’m sure – with my progress. I’ve had a couple of fainting spells when I was fighting a nasty, aweful migraine. I’m sure it was due to the fact that I hadn’t eaten like normal and it was due to head rushes – bad head rushes. I also had a fall on my way into the Testarossa winery. I’m sure that was a slip and fall due to stepping off the edge of the sidewalk – where there was a lip – and just not being able to catch myself. I’ve also had a few talking misdemeanors (like that…misdemeanors) where I’m thinking one thing and saying something completely different. I’ve become more sensitive to sound. I’m sure I’m looking for everything to tell me what’s happening in my brain isn’t more tumor growth. I’m not sure that’s working very well.

So, to continue with the Avistan, minus the Temodar, with another MRI in 5 (well, now 3) weeks. There have been some minor changes, but I’m hoping they’re minimum.

 

 

 

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.

One Year Ago…

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

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

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

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

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

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

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

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

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

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

Fear and Loathing in My Brain

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

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

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

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

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

 

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

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

 

 

Everydayleft, Right, Left…

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

ABOUT NATIONAL BRAIN TUMOR SOCIETY

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

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

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

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

Thank you for your support!

Karyn