You can read quick bullets listed below, or you can scroll down for a larger context overview. (This is an ongoing draft, thank you for being patient!)
How did my blog start?
- I was headed to Europe in a few days 4/16/10, so I started a blog for my mom/family to follow the adventure
- The first post just happened to be about my headache, and about the subsequent scan I requested
What are the milestones of your cancer journey?
- I had a massive, blackout headache while snowshoeing 4/9/10
- I googled my symptoms
- I asked for a brain scan 4/12/10
- The scan showed a massive brain tumor 4/13/10
- The first doctor wanted a brain surgery within 48 hours to remove the tumor (Wenatchee Medical Center)
- We asked for a referral to a larger hospital
- Awake craniotomy was performed at University of Washington 4/27/10
- Complications required an emergency brain surgery 4/29/10
- Recurrence was expressed 10/11, although doctors had been watching the tumor grow for a year and said nothing
- Radiation was recommended 10/11 with no expectation it would extend my life – I declined
- Was told by UW Hospital that another brain surgery was not an option 10/11
- Found UCLA’s clinical trial, met, and was scheduled for surgery 7/12
- Was physically assaulted and the brain surgery was pushed back to 10/18/12
- Full tumor resection by UCLA’s Dr Linda Liau 10/18/12
- Started DC Immunotherapy 1/13
- Started Chlorotoxin/Venom 8/13
- Recurrence diagnosed at 10/15 with the recommendation of radiation – no extension of life expectancy – I declined
- Brain surgery recommended 5/16 – I declined, hoping to use treatment to halt tumor growth
- MRI showed tumor growth had slowed, allowing for 3 more months of treatment before surgery 10/16
- Next MRI 1/17
Who am I today?
- I am an outspoken patient advocate
- An independent thinker
- A stubborn soul who’s easy to find a laugh in every situation, even in the face of a recurrence
- A person who is still trying to finding the magic combination of patient and person
What are my main hopes/goals regarding my blog and situation?
- That patients know their rights and value (either via insurance or out of pocket, we pay the doctors)
- That patients know that not all doctors have equal knowledge/capabilities/technology
- Attitude is half the battle. You don’t have to be happy all the time, but determination and humor will carry through even the hardest of times
- I hope that people become more involved in their healthcare
- I hope that people share their experiences, so that we can learn from each other
I was diagnosed with a diffuse astrocytoma in April of 2010, in Wenatchee Washington where I was living at the time. The first surgeon told me that I needed to do brain surgery within 48 hours of diagnosis or I might die. Fortunately for me, my boyfriend Danny was uneasy doing a brain surgery at a local small hospital in a rural city. A center that is not known for brain surgeries. When I asked for a referral to a major brain tumor center in Seattle, to deter me, the Wenatchee surgeon said some pretty crazy things like if I flew, I could die of brain swelling. That I shouldn’t drive over the mountain pass to Seattle or the pressure in my head could kill me. He also told me that I shouldn’t eat garlic because it would thin my blood, again causing more swelling of the brain and death.
We later learned, while we were at the major brain tumor center in Seattle, that all of that was false. If I would have trusted the first surgeon that I met, I would have died. He did not have the capabilities to do an awake craniotomy, which was necessary for the diffuse nature of my tumor. I also, during the brain surgery, had a blood clot in my brain and a hardening of my dura mater, requiring half of my dura mater to be replaced by pig dura mater. Wenatchee did not have the replacement tissue to undergo that emergent situation. It’s scary to think that I almost trusted the first surgeon I met, that I could be dead right now because I trusted a doctor to have my interest at heart. While in that first meeting in Wenatchee the surgeon, was drooling over the massive tumor in my head. It was sobering, and gross. He never saw me as a human, just as an experiment. Although he is a neurosurgeon by trade, that also includes any type of brain or spine surgery – he is not a brain tumor surgeon.
It’s hard, because when you get diagnosed, to say it’s traumatic is an understatement. And it’s not traumatic for just you, it reverberates all throughout the family. It’s hard to know what to do, or know who to trust. The fact that we have to be on our toes, and analytical about every treatment choice, every single doctor we encounter, is exhausting, but it’s necessary.
I awoke from my back-to-back brain surgeries in Seattle, paralyzed on my right side, with severe aphasia (the inability to communicate verbally or using written words). I didn’t know the alphabet, couldn’t use more than a single syllable word, people had to dumb down for me, to talk slowly, and I still didn’t understand most of what was said. The saddest part is that I lost my humor. I didn’t understand jokes or sarcasm. What saved me was my hunger to communicate, and my hunger to do things myself. Needing someone else to wipe your bum is an incredible motivator. Although I couldn’t recognize, understand, or process speech, I was able to type my thoughts and feelings on a computer. It wasn’t always clear, and it was rarely grammatically correct – still often isn’t – but I have persevered because of the joy I get from connecting with others. I could chicken peck with my left finger, and express myself, but I couldn’t even read back what I had typed.
Sometimes I still can’t believe how far I’ve come. It’s hard to express since the majority of my progress has been silent, off record. I’ve typed and shared from behind the screen, but people rarely witnessed my progression face-to-face (learning to read, and write, and speak – to walk, jog, then run). That part was endured within my family and friends, with my love Dan, and through the eyes of my speech and physical therapists. It’s hard to explain, but I can quantify it. It has been pure joy. It has been real life. It has been hard work, and magic, and miracles. I am an anomaly, an outlier, and I am thankful every waking moment.
I have had doctors and nurses and psychologists tell me that I would not heal. That I would not run. That I would not read. That I would not get better. I have also been told by different doctors and nurses that I could get better, if not just a little bit. If I would have listened to the wrong folks, I might have given up. If I chose the dark over the light, my life would be different.
The first time my brain tumor started growing back, my team of doctors/specialists at University of Washington, told me that radiation was the only option. They said chemo would not help me. Then they said that radiation would not extend my life. I asked for another brain surgery and they said no. It was not an option. I called UCLA to try to get into a clinical trial (one where they use your brain tumor tissue to create a personalized tumor vaccine) and they were willing to give me a second opinion. They disagreed with UW and scheduled me for another brain surgery as part of the trial. When I awoke from that third brain surgery, the neurosurgeon told me that my tumor tissue was too far mixed with healthy brain cells. I was not a viable candidate for the trial. Again another dead end on my journey.
Knowing my diagnosis comes with a death rate of 99%, and having watched the tumor come back so quickly, I knew I had to do something more to save my life. I have since researched, and risked everything to travel to Germany for treatments. I have been injected with engineered viruses, I have snorted treatments, I have sublingually ingested treatments. I have swallowed hundreds of thousands of supplements and off-label drugs. I have combined things. I have worked to boost my immune system, to heal myself. I do all of this, spending almost every dollar we earn on my health as 99% of my treatments are not covered by insurance.
In May of 2016 I received the news that my tumor is growing again and my neurosurgeon at UCLA wants me to do another brain surgery. It will be my 4th. Because of the complications I’ve endured from other brain surgeries, you can understand why I hesitate. I’m currently on several off-label drugs, and about to start a chlorotoxin treatment which I was on for a few years not that long ago. I was able to bide some time, pushing an MRI back to October with the understanding that if symptoms get worse, I will be forced to move up the scan, and endure another craniotomy. In the meantime, I’m hoping to stop the tumor growth, or even hoping for a miracle of tumor shrinkage. I’m disappointed that the tumor is so pervasive, so steadfast, but oh well. What are you going to do? Give up? That’s boring.
I want to live. I want to live like most people want a new car, or a baby, or a vacation, or a new house, or a boyfriend, or wife. I want to breathe this sweet air. To feel the cool breeze. To hug. To laugh. To smile. To ride my bike with the sun on my face.
This is my blog, my place to express myself, to share my knowledge, to work on my aphasia, to live. If I can do anything to help you, please comment below with your email address and I will get back to you. I will delete your comment after I get your email, in order to keep your information private and safe.
This journey has not been easy. I am scared every single day. As my spirit soaks up every minute of this beautiful life, I am just as terrified with each second. I don’t sleep well because I never want to miss anything, but when the lights get low, and the world calms, there are few distractions. That’s when my heart hurts from the pain I’ve endured. It’s when the uncertainty of survival is loudest.
There are things about this blog that are confusing. I have been told many contradictory things by doctors, nurses, specialists, therapists, books, documentaries, and I have shared as I have evolved. So please do both of us a favor, do your own research. Be true to yourself. Follow your instincts. Don’t rely on what I say as fact. It’s hard to navigate a brain tumor diagnosis, or any diagnosis for that matter, but I have tried to provide resources that should help. Please check out the tabs at the top for more information.