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.

 

Life With a Chronic Illness

I saw this video and felt I needed to share it. Morgan articulates what its like to live with a chronic illness in a way that illustrates the struggle, the loss, the prejudice, the heartbreak, the fear, and the hope of it all.

Morgan Grindstaff’s “What is Cystic Fibrosis?”

While Morgan is living with Cystic Fibrosis and not a brain tumor, his words resonate. We’re all hoping to survive.

Warning: there is some language that the more sensitive of you may find offensive.

Today’s Beautiful Things

Cuddling with my son in the car while we waited for the first bell to ring (his sister starts 20 minutes before him)

Sunshine on my back and the cool winds of California winter/spring

The smell of flowers in bloom and the beauty of the blossoms filling the trees

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Watching birds gather nest materials for the first nest in our birdhouse (our new tenants) – my dad confirmed that they’re Oak Titmouses

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Seeing the finches eat through 3 bags of seed in less than 2 days

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Witnessing the squirrels risking their lives to come into the yard in search of nuts they buried in the fall (the dog has yet to catch one)

Wearing sandals as we approach a few days of summer-like temperatures

Finding so many signs that life is renewing and vibrant as we approach spring

Reminding myself that I’m still tumor free

Add to list: seeing the first butterflies of spring

MRI Day – 6/14/13

If I’m counting correctly, this will be my 7th MRI since October 7th, 2012. I think there were 3 while I was in the hospital – maybe more. Apparently the shaved spots and lifesaver stickers were for guided MRI something or other. I had one about a month after my 6 weeks of non-spa treatment (Jan 2, 2013) which showed us what the radiation did to my brain and gave a vague confirmation that there was no tumor. Another in February – on my son’s birthday (he’s always wanted an MRI for Mommy for his birthday). This one confirmed that my post-radiation brain was progressing well – whatever that means – and there was no obvious indications of tumor growth. Another in April – this one being my favorite so far. No new tumor growth!

There have been many CAT scans too, but I couldn’t count those since I don’t remember some of them. I don’t remember the first one in the ER, but I remember in great detail when the doctor came in, sat down, held my hand, and told me that I had a brain tumor. I also remember the one I did before I started my radiation treatment. The CAT scan was very familiar by then – the very strange sensation of feeling like you’re peeing (warmth in your nether regions) when they inject the contrast dye. It was all of the other things happening around that particular scan that make it memorable – particularly the fitting of my radiation mask and the big brained physicists taking VERY precise measurements to ensure they were going to point the lasers in the correct places. I am a HUGE fan of those physicists since they apparently did the math right and hit the right spots.

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This is me being fitted for my radiation mask last year, which involved a CAT scan.

Based on what I hear and read from my fellow brain cancer/brain tumor humans, we all have very mixed emotions about MRI day. Everyone feels anxious and hopeful at the same time. Everyone struggles with whether to risk planning activities or make commitments beyond the next MRI – which means we live in 8 (or 12, or 16) week intervals. If we have kids, there may be an extra level of anxiety…and of hope. At least that’s true for me.

Today is filled with emotions, as all MRI days are, but I know we’ll hear good news. Because failure is not an option.