2 Year Anniversary

Well, I did it. I beat the average survival statistic for a patient with a Glioblastoma Multiforme – the deadliest of all the brain tumors. I have brain cancer thanks to the mysterious golf ball size of aggressive malignant cells that grew in my brain. It’s been 2 years since that beast was removed by my brilliant neurosurgeon.

In those 2 years, I’ve gone through chemo and radiation treatments (which ironically has a risk of creating brain tumors) and began a clinical trial intended to train my body to fight the cancer. I’ve had 2 seizures (not counting the first) that have landed me in a hospital bed – the second one being life threatening. I spent months without driving privileges and still managed to get my kids to school and go to the grocery store thanks to my mom and my kind neighbors. My mom’s love and caring have provided my family with a consistent ‘normal’ life and have allowed me to focus on healing and fighting. I have grown even more fond of my neighbors and our spontaneous driveway parties and planned outdoor movie nights. I’ve napped, a lot. I went to New York with my husband. I’ve witnessed his courage, strength and love each and every day. I went to New York, London, and Paris with my family. I’ve read numerous books – most of them good. I met Diana Gabaldon and got her autograph. I lived through a kitchen remodel (not recommended while going through treatment.) I adopted a dog who is both sweet and crazy needy. I’ve watched my children continue to grow and thrive. My son’s guitar skills, love of soccer, creativity, ingenuity and love for some adventure amaze me every day. My daughter’s kindness, persistence at resolving social conflicts, strength in the face of adversity (like soccer ball kicks to her face), her natural skills in caring for young children, and her love of books and learning make my heart swell with pride. I have so many more things to be grateful for as I’ve attempted to live every day left in my life with joy and appreciation for the moments I’ve been blessed to experience in my uncertain future.

But the fight continues on. I’m fighting to still be here to celebrate my 4 year anniversary and my 6 year anniversary and so on…

Thank you all for the love, support, prayers and healing energy you’ve been sending my way over the last 2 years. They’ve gotten me to this point. I’d appreciate the continuing support to get to another anniversary.

As we continue the debate began by Brittany Maynard’s decision to move to a state that supports ‘die with dignity’ laws, let’s not forget the thousands of other people fighting this horrible disease and other types of brain tumors. We should also be discussing what can be done to develop new treatments and search for a cure so we don’t have to think or make decisions about how to relieve our own suffering in our last moments of life. Many of us with GBM’s have survived for extended periods of time, even if we received grim and specific prediction of the time we’ve got left. Fight on and see what miracles arrive and do your part to help others live longer in the future.

If you feel compelled to help focus on the brain tumor element of this story (not saying the national dialogue around ‘die with dignity’ is unworthy or less important), make a donation to the National Brain Tumor Association or any other organization of your choice that helps support research for treatments and cures, support for families and patients, and raise awareness of the other side of Brittany’s story.

 

My Brain Lives To Fight Another Day!

It was MRI day today. The Radiology center I went to was new (to me.) It was like a spa – all shiny and new, with Japanese style sliding doors.

See? Fancy spa-like doors.

See? Fancy spa-like doors.

Other than that it was just like any other radiology center – no facials or mani/pedis. I had to ‘train’ a new (to me) nurse how to locate my teeny, tiny veins and reiterate a few times that it would require a pediatric needle – why do they never listen? It’s not my first time at the rodeo. Luckily she listened AND I successfully dissuaded her from sticking me in my forearm or hand.

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Some nurses believe the more hot packs, the better

Leading up to today’s string of appointments, I was anxious – as all brain cancer patients are when we know an MRI is coming up. I slept a little poorly. I was distracted. I tried to stifle my anxiety because if it was bad news there was nothing we could do about it, we’d have to just deal with it if afterward. My husband and I didn’t need to discuss our mutual anxiety. We knew it was there and talking about it would only make it worse. He occupied himself with an insanely busy work load. I occupied myself with a project to make costumes and props for a school play. I don’t do things half-assed, so it was a great distraction. It exercised my creative juices, which is always a good thing.

As an example of the anxiety, I devised this crazy idea while waiting for my follow up appointment with my NO. But first, I know there are people out there who have to wait for a day or more to hear the results from their doctor – I don’t know how you can stand that wait. I know I’m lucky to only have to wait an hour to hear results, I’m sorry that anyone else would have to wait any longer than that.

On to my crazy idea…I convinced myself that IF my doctor came in the exam room BEFORE the nurse and the clinical coordinator for my vaccine trial, it would be bad news. IF the nurse came in first, it’s all good. While you laugh at me, there is some logic to this idea. I can’t continue in the trial if my tumor comes back, so what’s the point of all the neuro tests and trial questionnaires if its back? So, here’s what happened…the nurse (who is awesome) came in and after our pleasantries said, ‘First thing, I haven’t seen the results.’ Ok, hole number one in my theory. She completed the standard set of neuro tests and then went to tell my doctor I was ready – this happens every time…nothing new at this point. But THEN, the nurse, clinical coordinators AND my doctor all come in at once – this NEVER happens. OH CRAP! Here it comes! It’s back! The other shoe is about to fall…and so on. All thoughts passing through my head in a single second. And the second hole in my theory. Ultimately, it was just a signal that his schedule was light and he wasn’t with another patient delivering devastating news.

My tumor has NOT come back. No changes from my last MRI 12 weeks ago. So much for that crazy idea, which just goes to show that crazy ideas can sometimes just be crazy.

I aced the trial questionnaire and resisted my urge to mess with the new clinical coordinator by asking the questions and answering them before she could begin. Next time…next time…

I always forget about how exhausting MRI day is – even when its good news. The anxiety you’ve carried around all week is HEAVY. You’re powering through and then it’s done and you realize just how heavy it is and that you need a long, long nap immediately.

There is some bad news, however, but I don’t want you to panic. Its pretty serious and I may need some time to get through this transition. It seems to be then end of clementine/mandarin season. I know…I know…it’s ok to cry. They’ll be back next year. Until then, we’ll have to move on to cherries, plums and peaches.  We’ll miss you tiny oranges.

 

 

 

 

 

My Absence Explained

Some people have been asking why I’ve not written any posts recently, so I thought I’d give you a quick picture into my recent activities. It’s not particularly exciting I’m afraid. I was being a mom, with just a smattering of Brain Cancer.

I went on a field trip with my son’s class to a very cool place at the University of California Santa Cruz. It’s called the Life Lab and they learned about leaves, held chickens and warm eggs, and explored to find different kind of roots. It was pretty awesome and they had a great time. Because it was a pre-defined agenda for first graders, it was a little frustrating for me because I was finding things off of that agenda and I couldn’t use my discoveries as teachable moments. I found bugs, cool remains of some plant – you know, like when it’s just a skeleton left behind, an incredible view of the ocean, a bird’s nest and a few other things. I couldn’t interrupt the UCSC student’s planned schedule of discovery. So many missed moments – but maybe that’s just the previous educator in me.  I’ll have to take my kids back some day and explore more freely.

Other than that we’ve gone swimming, cleaned rooms, sorted Lego collections, walked the dog, supervised and supported a science project, hung out with friends and our awesome neighbors, volunteered in the school library, planned part of a summer trip, and other lovely, daily life activities. I’ve had a great time playing with the younger siblings of the girls in our school’s Girls on the Run team during practice. I attempted to fix a broken dryer – unsuccessfully – making us Wilders without clean underpants. I fixed a broken car – though to be honest, it wasn’t very hard – I pushed the connector to the negative thingie on the battery back down after it popped up. I went to a fundraising event for the Valley Medical Center Foundation where my brother-in-law is the Executive Director. He knows EVERYONE – it’s amazing to see him work a room and explain the value of the VMC to our community. My husband was a ‘celebrity bartender’ at the event. It was a great success and if you like wine, you should go to Facebook and like his page Wilder on Wine. He’s funny, knowledgable, likes affordable wines, and is incredibly handsome. And yes, this is a shameless promotion.

On the Brain Cancer front, I’ve had another round of vaccine shots. I was invited to be a part of 2 panels for Clinical Trial Awareness Week at Stanford. It’s interesting to see how different each trial is in terms of what’s being targeted, how is the drug supposed to work, how it’s administered, etc. For example, one panelist talked about spending 12 hours receiving infusions (with some breaks). Some people have to drive great distances to get their treatments. It takes me 20 minutes to get to Stanford and I spend about an hour and a half at the Center for Translational Medicine and then I’m on my way home to dig an ice pack out of the freezer. Again, I’ve been pretty lucky.

So now you know. I’m healthy, busy, and enjoying my between days. Now I’m off to start digging in the garden.

What If?

It was MRI day for me today. The typical anxiety and ‘what ifs’ set in this week.

What if it’s back. What if we have to explain the possibility of more surgery and associated risks to our kids. What if we have to explain that I may die. What if I do die.

Every mother out there is familiar with the ‘what ifs’. Once you have children, a whole new set of fears enter your brain. You know what they are. This is really no different, except that to address these ‘what ifs’ I can’t double check the window locks. I can’t tighten the straps of a helmet. I can’t teach them about stranger danger. I can’t teach them how to defend themselves against the bad guys.

I’m fighting as hard as I can against the bad guy lurking in my brain and so far, I’m winning. The ‘what ifs’ have lost.

MRI was clear. 17 months clear.

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.

MRI #2, This One Was For Science

Some of you knew that I was having an MRI yesterday. My last was 4 weeks ago. This one was required for the vaccine trial…that’s all.

I had switched back to an 8 week cycle for my anxiety. Between the visits for MRIs and vaccines, I’ve seen my neuro-oncologist more often than I’ve seen some of my closest friends. I’ve also had appointments with cutaneous oncology and a rheumatologist. Those last two for my psoriasis – which flared after I stopped my chemotherapy. So, for those of you who wonder if chemo helps reduce symptoms of psoriasis, my answer would be yes.

I almost think that since there’s nothing interesting going on with my brain at the moment, they feel the need to find other things to focus on. While I do have other health issues, they are very minor in comparison to brain cancer. Everything else can be solved with a little topical creams and a good chiropractor. Now that they know that, I’m hoping they give up the search.

But anyhoo, I had another MRI and nothing has changed since my last MRI 4 weeks ago. BUT it was at 7am. This is way too early for me and most people I know. Luckily I found a ride (thank you!) and started my day with a nap in a tube that made Atari ‘video game’ noises.

My next appointment was at 1pm. So, I spent my day trying to stay warm at the Stanford mall – an outdoor mall configured in such a way that the freezing winds blow powerfully at you from all angles. I thought maybe I’d get some Christmas shopping done. I sat in Starbucks to stay warm while waiting for stores to open and the reality of having carry any presents around for the rest of the day occurred to me. Ultimately, I did VERY little buying and a lot of browsing – mostly just to get out of the icy cold wind and avoid sitting in the Cancer Center for hours.

It all made for a very unexciting and long, cold day. Needless to say I’m going to go back to a 12 week MRI schedule. My neuro-oncologist has better things to do with his time and so do I.

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?

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.

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