Waiting With Bated Breath

Most of us with stage IV brain cancer (or any type of cancer, really) talk and think about how far ahead we plan our lives. At first it’s ‘recovering from surgery’, then ‘getting through radiation’, and other short-term, cancer related ‘milestones’.

Then it’s 4 week MRIs…8 week MRIs…12 week MRIs… And with any luck it doesn’t go backward from there. We feel nervous about planning anything beyond those timeframes. We live MRI to MRI.

At some point, when things are going well, we might venture out beyond the 12 weeks and plan a trip/vacation or buy concert tickets for a show 6 months away.

BIG family milestones might be too much – entering high school, first dates, driver’s license, graduations, weddings, babies. Those may be too far out and we can only tentatively hope beyond hope that we are here to witness it all. (My kids are 8 and 11, so we’re a ways off from most of those)

So, you start to find other, safer perhaps, big events that push you forward in your fight. Maybe it’s the World Series, the Superbowl or the World Cup if you’re a big sports fan. Maybe it’s the harvest if you’re a gardening fanatic and have been waiting 3 years for that Avocado tree to produce something…even just one avocado. Maybe if you are glued to political drama, it’s to view actual bipartisan decision-making in Congress or witness politicians representing the people instead of the money. Ok, that last one isn’t very realistic, but you get the idea.

For me (family milestones aside), I aim my survival goals at when the next Diana Gabaldon novel is coming out. I aim for making it through the final part of season one of Outlander on Starz (April can’t come soon enough.) I aim to see if I finally make a decision on joining a yoga studio. Can I get to 10,000 steps a day? Are there enough recipes to use all of my son’s harvest of sweet potatoes? Will the dog EVER learn to get his leash on his own when we’re going for a walk instead of staring at me while I suggest the idea? Will I ever get up the courage to make artisanal vegan cheese? Will we ever learn who was responsible for making that idiotic last call for the Seahawks causing them to lose the championship?

These may not be the most important survival goals in the grander scheme of things, but they all take me past the next MRI. They get me back to living for tomorrow and beyond regardless of what my brain tumor cells decide to do.

My next MRI is Friday, by the way.

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.

 

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?

The Alternative Anniversary

My mother-in-law thinks that we should be celebrating my one year anniversary today since it’s been one year since my tumor was removed (instead of discovered). Who am I to argue with that?! Any excuse for a party.

I said most of what I wanted to say about surviving a year after diagnosis in my last post, so to commemorate this alternative anniversary, I’ll focus on some of the highlights of the week I spent at Stanford after learning about the ‘beast’ and my experience (though perhaps vague) with brain surgery. It’s interesting what I remember when I look back a year later. The people who cared for me stand out the most – probably because they helped me feel strong, safe, and reassured that I was going to be fine. It never occurred to me during that week that I wasn’t going to be fine, that something could have gone terribly wrong, that I could have died. But maybe it was just the drugs they pumped into me during my stay…who knows.

Coincidentally, today is Brain Tumor Thursday (as is every Thursday.) The social media community of brain tumor survivors, caregivers, and loved ones post information about brain tumors (benign or malignant), research, treatment, facts and personal experiences. We’re trying to educate and raise awareness while offering support for each other. It’s an uphill battle, though – we don’t yet have major sponsorship or color campaigns even though brain tumors can often be more deadly and devastating to those who have them than other kinds of tumors/cancer (I’m not belittling the need for awareness and funding for other types of cancer, just observing the disparity in research, funding and awareness.)  #BrainTumorThursday, #btsm

One year ago TODAY, I had a craniotomy. In a million years, I’d never have imagined that someone would drill holes in and take a saw to my skull to be able to remove a clump of unwelcome cells from my brain (~4 cm worth of cells, to be moderately precise.)

While the days between Oct. 7 and Oct. 10 of 2012 are a little foggy – thanks to postictal haze, drugs, and that unwelcome mass pushing from my left frontal lobe into my right frontal lobe, here’s what I remember…

Hospital food – as a vegan, options are limited and are usually Indian oriented. I say ‘oriented’ because they claim this food was Indian, but it barely resembled the delicious food my Indian friends cook. This is where my weight loss began and even if I LOVED being in the hospital otherwise, the food would have motivated me to do what I needed to be released.

Nurse rotation – we had some amazing nurses taking care of us. I must have had my vital signs taken a thousand times during my stay at Stanford that week. Not to mention the blood draws, the MRIs, the CAT scans…and probably a few other things I don’t remember. But the nurses were amazing – all of them, even though they had to wake me up every couple of hours to make sure I was still breathing, didn’t have a fever, and that my blood pressure was still normally low. They also gave me some lovely drugs, so there was that bonus.

TV and Movies – during the down time while we waited for surgery, we watched a lot of TV and movies. As an example of my mental fog, I remember starting to watch Rango, but I don’t remember actually watching it (though my husband tells me I was awake and alert). This is in no way a review of the movie, I promise.

IV lines – I had at least a dozen over that week for various reasons and they left bruises. The worst, however, was the arterial line placed just before my surgery by a resident anesthesiologist.  It took a few attempts, hurt like a bitch, and left a bruise that lasted for weeks. They said my face would bruise badly, surprisingly it didn’t…but that arterial line bruise more than made up for it.

Blood – If you aren’t aware, your scalp will bleed profusely when cut. I had a 6 inch incision – from above my left ear to the top of my head – and my face was pulled back from my skull during surgery. Gross, but true. Well, turns out that bleeds a LOT. I came out of surgery with ~35 stitches and hair crusty with blood. I looked like a macabre medusa. I don’t think anyone took a picture…sorry. I don’t think anyone wanted to remember. One of those awesome nurses I mentioned helped to wash that blood out of my hair BEFORE my kids came to see me after I left the ICU. I am forever grateful to her for helping to spare my children from that image of their mom. Aside from my blood covered head, to give you an idea of the quantity of blood ‘donated’ during surgery, I was swabbing it out of my left ear for weeks after surgery.

Doctors, specialists, residents, medical students – Stanford is a teaching hospital, which means I was a learning opportunity. Rounds – morning, noon and evening – included a gaggle of people. You get used to repeating yourself and losing all sense of privacy – lying in a hospital bed in front of 5-10 people asking questions, looking at me as though I weren’t really there. One of the residents who DID notice I was there and was incredibly kind was responsible for shaving little spots on my head to attach lifesaver like stickers that would help in the MRI guided surgery. He did way more, I’m sure, but that’s what I remember him doing…coming in with a razor and ushering in my year of weird hair.

Lifesaver face

The Operating Room – Again – amazing nurses. The OR was FREEZING. Even with a sedative, the panic started to set in once I was wheeled into the OR. The nurse got me 2-3 more warm blankets (one benefit of hospitals is they keep blankets in a warmer) and sat close, holding my hand and talking in a calm, reassuring voice until I was sleeping, oblivious to the drills, saws and scalpels. Unlike so many neurosurgery patients, I didn’t need to be awake for surgery (thank goodness.) 4ish hours later it was over and I was taken to the ICU to recover.

ICU – Coming to out of anesthesia can be an unpleasant experience if you’ve never done it. This time, however, wasn’t so bad – probably because I was happily drugged up for the pain. I remember opening my eyes, and seeing a nurse at another patient’s bed – she smiled at me and gave me a little wave. That was it. That smile and wave will forever be etched in my brain – I was alive and well. If I wasn’t, she would have been in my face and certainly not smiling. She also bent the rules a little to allow my husband to stay with me and let me sleep for longer periods of time.

The next morning I was moved back to a regular room – I lucked out with private rooms my whole staycation at Stanford, which meant I had some level of privacy and quiet, allowing me to sleep better and recover faster. There were more tests, more doctors, residents, students and nurses. There was more bad hospital food, flowers from loved ones, short visits from family and close friends, and slow walks around the ward in my desperate attempt to prove I was well enough to get the hell out of there – which I did on Oct. 12.

But before we left, we were told that I had a stage 4 Glioblastoma Multiforme of the giant cell variety. The neurosurgeon said he felt confident he got it all, but there were no guarantees because it was not encapsulated. I would require radiation and chemotherapy and we met my Neuro-oncologist for the first time. We officially entered the world of brain cancer – but didn’t fully get just how serious it was until our post-surgery appointment with the neurosurgeon when he told me this tumor would likely come back and would kill me – it was just a matter of when. Well, I’m not dead yet and I’m still fighting like mad.

Given all that could have gone wrong that week and after, I really was very lucky. I had no post-operative complications or infections. I didn’t have any reactions to medication (until later). I didn’t have any major physical disabilities occur because of the tumor or surgery. Most importantly, I had a strong advocate by my side at all times and an incredible team of nurses and doctors taking care of me.

That tumor has yet to return and with any luck, I won’t have to repeat this experience ever again.

I think my mother-in-law is right – this alternative anniversary is also a day worth celebrating.

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.