Abbreviated 18f-DOPA PET Results

It's a long story, and I'm pretty pooped, but here's a basic overview. The "scan was concerning for active disease". It really isn't the biggest deal, it could have quadrupled in size. There's still questions surrounding imaging possibly being effected by treatments - not likely, but I won't rule it out, I'm always hopeful. We're trying to decide what our next step is (stopping treatment, skipping treatment, adding treatment, etc.). I'm surprisingly pleased with the results. It's not the best news. As our neurosurgeon says, "It's trending toward recurrence"(there are two "nodules" they're watching). She wanted surgery, but we asked for a little more time. I'm not ready for the risk. I'm too scared. If the area is worse in October, we will revisit our options which include the usual suspects: surgery, radiation, chemo, or a combination.

Apparently even my happy kitty socks couldn't save the day, but they made me and my TSA pat down lady happy, so there's that. Sorry that I won't be letting people know individually, but as you can imagine, it's overwhelming to reach out to all you lovely friends, I'd be on my phone for hours. I'm hoping to give a better explanation about the situation in the coming days.

Germany Again? Excellent!

I'm home; I am resting after flying out to NYC for treatment (yep, what a week). I was able to get my immunotherapy shot, but was also informed that I am dangerously low on my dendritic cells (the part of the white blood cells that boost the immune system and that they use for my treatment). That means I need to head to Germany to engage in an another leukaphresis where they separate my white and red blood cells for harvest. I emailed the clinic just to verify, hoping I could squeak out a few more months before travel, but was graciously informed that it's best to head to Germany ASAP. So, although Dan took off some time for filming, and a few other random days this month, we are hoping that he can take off more time in the next couple of weeks so that he can accompany me for treatment. I kind of see it like a super sexy medical honeymoon. Because there's nothing sexier than life, am I right!?

I'm still on cloud nine from the surprise wedding, and the whirl of my awkward self, filming to share our story. A couple of people have thought I was crazy for being filmed, but I see it as an honor. Our journey has been loud (if you read the blog anyway). It has been hard, and fun, and beautiful, and unexpected, but most of all, it has been an example of following our hearts, of being strong, and true. When we were approached for filming I was hesitant for a little bit, then I thought of the good we could do by sharing what we've gone through. When you get diagnosed with cancer it's like being thrown into a burning ring of fire, and sometimes you can find a way out of the dangerous maze, and sometimes you can't. And it's terrifying. If I wouldn't have explored more than my original option of the neurosurgeon in Wenatchee ("We will put you to sleep and scoop it out."), it is probable that I'd be dead right now - because of the blood clot and dura mater hardening, not to mention the infiltrating nature of the tumor that grew fingers throughout my healthy brain. So much of my healthy brain would be missing - like the controls for my language, and the controls for my physical body. If we wouldn't have researched, and been strategic, and worked tirelessly, it's probable that I wouldn't be alive, or I would be a fraction of the woman I am now.

Why am I alive right now? Why am I not paralyzed any longer on my right side? Why can I read and write and walk and run and research, when originally I couldn't? Why have I been able to overcome so much? Because I am meant to help. I am meant to be a friend to others, to help people navigate and do their best to survive. It is not easy; it's heart breaking. I just received a text today from a brain tumor friend who just found out he is dealing with his second recurrence in less than two years. I want to fix it, but I can't. What I can do is provide solace, and information, and support, and I'm happy to do it. If only I had more power. But the power that I DO have is a voice, and I will broadcast that voice as much as I can to provide information (research, treatments, hope). This cancer life has been a gift of opening my world to amazing people. To immeasurable love and kindness, and at the same time it rips my heart in half. It's bloody and painful, and heart wrenching.

I share my story with the hope that people realize we have choices. That they listen to their hearts, to their intuitions. I hope that people see that in so many things in life we are placed in boxes, on assembly lines (be it treatments, or work, or relationships) but we also have control. That it may be hard, but we can break molds, and surprise ourselves with our own strength.

One Step Back, Three Steps Forward

*******This blog was written earlier this morning**********

I can't seem to figure out if Jesus cat lives in this house, or if Cali Jesus lives there.

So, I put a little poll on the blog for you to put your two cents in about my next treatment choice. I'm nervous about doing another brain surgery, but it provides the freshest tissue available which allows for the most effective vaccine. The trick with brain tumors, especially mine, is that they tend to morph. They change even within grades, constantly evolving. Brain surgeries have advanced so much, and they are relatively safe. Just typing that seems crazy, but when I went in for my original surgery they told me that there was only a 10% chance of having any complications. Of course, always wanting to be the exception, I fell into that group. You might remember within hours of my tumor resection that my dura mater pulled from my skull and a large blood clot formed in my tumor cavity. Luckily, my father who was with me in the ICU noticed that I was getting progressively incoherent. He started pushing the nurses to get the doctors, and at one point even started yelling at them when they argued. When my neurosurgeon arrived, he kicked everything into high gear, they were running me into surgery, it was very serious. It was life threatening. As my mom reminded me this morning, I almost died.

To be in the position to have to decide on brain surgery is incredibly difficult. Do I avoid it because of the possible risk? Do I opt out of the most effective western treatment because I'm afraid? I'm equally scared of doing the surgery as I am about missing out on the benefits of the treament. In my soul, I feel like I need to do everything in my power to heal my body, and sometimes that means taking one step back (surgery) and three steps forward (shots of the personalized vaccine).

I'm grateful that I'll be getting the Dopa PET scan to verify that the tissue in question is or isn't tumor. That's the first step which allows me time to make my final decision. Who knows, maybe we'll find that I've done enough with my supplements to shrink Hermie.

The trick is that, if Herman has morphed at all, the German dendritic cell therapy will not be effective. We need the most recent pathology to target my exact tumor as it is in this point in time. It is pretty much a guarantee that my tumor has changed over the past two years. Especially with all of the different supplements that I've used. Each time you attack a tumor, it tries to morph to avoid death.

In essence, I could try the German therapy, and add that to my supplements - which is exactly what I had been planning on doing. But, then, I contacted Dr Liau and found out that I could do the dendritic cell therapy here at UCLA. I've never been much of a quitter and in my gut I truly feel like I need to do this brain surgery and get the best vaccine. I can add that to my supplements. I do not want to die, obviously, but sometimes you have to risk your life to have life. I want to get better. I want to have Danny's beautiful little babies. I want to heal myself. I want to show others that we can beat this!

A few different friends have asked if we could do a biopsy instead of a full on surgery, but unfortunately, that's not how it works. The more tumor tissue you have, the more potent the vaccines are. The way this works is that they remove all of the tumor, then they divide the tissue into three equal shots. If you only have a little bit of tissue you might only get one shot (if there isn't enough to divide). You actually want more tumor in this situation - crazy and counterintuitive. It's opposite from everything we've been working toward, but hey, it's how it works.

Although I'm scared, I refuse to let fear dictate my life. I do not want to take a hundred different pills a day, remain shackled to a refrigerator since I need to take milk with most of them, and live tethered to my house. It makes it hard to go for a run, or a walk, or go hang out with friends - it's tricky to even get to the gym. I only have so much time between pills. It's not realistic, and it's not a fun way to live my life. It makes me depressed. I know that the supplements alone are not going to be enough, it will take too long and I won't be able to stay up on them. I need to amp it up or I worry I'll lose the drive to fight.