Confidence is Not Cocky

Do you ever do exactly what you want, when you want to do it? To be free? I just left my dirty house, with my unpacked suitcase for NYC, and hopped on my bike for a jaunt around the neighborhood. I caught the final hour or so of sunshine. It was surprisingly nippy out, a great breeze off the ocean frosted my face. My cruiser and I rode donuts around quiet streets, circle after circle, block after block. I didn't care what people thought, even though technically I was a 30 something acting like a kid. A big old kid, and it felt soft, and comfortable, and safe.

 

I am so nervous about the panel. It's one thing to theoretically be on the Surviving Terminal Cancer premier panel, and a whooooole other thing to literally be on it. I've had all kinds of thoughts, thoughts of how I can represent our family of survivors, thrivers, those in treatment, and the missing. The movie discusses people who have been diagnosed with glioblastoma, and anaplastic astrocytoma. Those are stage 4 and stage 3 respectively. I'm just a lowly infiltrating astrocytoma. Granted, I've been around the block and had my fair share of brain surgeries and treatments, but it's different. I somewhat feel under qualified, then I think, shoot, I'm just their little sister. According to the statistics, I will grow into a stage 3, perhaps even jump to a stage 4. I've always been watching and learning from my older sibling's journeys, seeing how they navigate, how they handle things. I look up to them, the Ben Williams, and Anders Ferry, and Rich Gerber, those who are living far past their diagnoses because they took their health into their own hands. They researched, and combined, and strategically cocktailed their way into longevity. They are rock stars, and inspirations, and in my own way, by going so far outside the box always looking for cutting edge treatments refusing to just lay back and die by the joke that is standard of care for brain cancer, I'm honoring those who have gone their own way.

When I was processing the information of joining the panel, I thought about how I always put myself down. I always belittle the blog. I say things like, "Oh me and my silly blog." But why? Why would I play down my years of heart, and knowledge. It's me. This is who I am. I'm sharing my soul. I started thinking, if I was a man in the same position, doing the same thing, would he/me put down his accomplishments? His blog? I don't think so. I think most likely, an average man would just be matter of fact that he writes a brain tumor blog. He probably wouldn't put himself down. Why do girls and women do that? Why do we downplay who we are, what we've done, or what we do? Once I realized the error of my ways, I started working on no longer belittling myself, or my blog. I'm trying to be authentic, and allow myself to feel good about what I do. To acknowledge that it's okay to be proud of this blog, to be proud of myself, to be proud of what I'm trying to do to help others. In order to do that, I had to recognize that feeling good about what you do is not the same as being cocky. You can be confident, and passionate, and do amazing things while still being humble. They are not mutually exclusive. 

Anyway, I'm kind of rambling, but it was a big moment when I realized that fact. That I can be confident and humble, and I don't have to downplay what I'm doing. Even just writing that out feels strong, and real. I am allowing myself to be proud. Wow. This feels good. And foreign. I don't think that me being on the panel makes me any more important than any other person dealing with a brain tumor, but I hope that with my experiences of traveling for doctors and treatments around the globe, I will inspire others to not settle. That we're worth it. That we can demand excellence. That's what I hope to do, just share what I know, what I've done, and allow others to dream big. This doesn't have to end us.

On a side note, a very wonderful man who has been a family friend (we were driven together through the Oldwyn family business a few decades ago) has donated to cover the expense of filming the panel, and he also connected us with the videographer, so the taping of the panel is a go. (Thank you dad for reaching out!) I will check with him before I out his name, on here, but what a gift!! He may never know the full impact of what he has done, but his donation will live on indefinitely as a recorded piece of information for other cancer people that will come after us. I only hope that the information on the panel will be helpful in other people's journeys. All I want to do is help those who are on the same journey, and those who will come after me, get from A to point Z with less bumps then I've had. Let's band together and combine our knowledge, our connections, our drive, and collectively tell cancer to go kick rocks.

Pregnancy and Glioma Don't Mix

I want to share why this panel, this invitation to join the premier of Surviving Terminal Cancer, is coming at the perfect time. For the prior month I had been processing the loss of a perceived future. Let me explain. From the beginning of my treatments, Dan and I have always planned on having babies as soon as the treatments concluded. It was a goal, a reward, a carrot dangling to work toward. I have always wanted to be a mother. It has been a dream to fall in love, to create a life, to carry a baby, to birth a baby, to have a family. And I treated it like it was a given. I thought my only issue was to eradicate the cancer cells from my body, to have several years of clean scans, then I was good. But it turns out, after some research, that it isn't that simple. That cancer will never go away, even if my body seems clean and clear and strong and capable.

When I started looking into it I found out that pregnancy absolutely correlates with recurrence. Obviously it isn't a given, that it would cause me a third tumor, so we could risk it, but it's so scary! It's gambling with my life, I feel like our dream is crushed. So over the past two months - since we researched - we've been absorbing the information, and essentially I've been in a state of grieving. Like I said above, I'm grieving our perceived future, the life I thought we would be able to live. Because I have had this dream my whole life, since I was a very, very little girl, it will take a long time to process the reality that my life will not be what I want it to be - even if I'm healthy. Even if my brain tumors never come back. It's painful, and incredibly sad. I go back and forth between reluctant acceptance, and reminding myself that I am just lucky to be alive. But it's hard, because if I live a long life, and it's without children, what will it look like?

One of the main reasons why I hesitated, and saved this information, is because I didn't think I could handle the obvious statements that I was sure would come. Like the, "You could always adopt." Or "There's a lot of children than need happy homes." Or, "At least you have your life." Of course, those are all the thoughts that I tell myself people could think and say, and that's because I think them and I tell them to myself. And it doesn't change things, or make me feel any better. It actually makes me feel worse.

This panel is the perfect distraction for me. I need other things to think about, a bigger cause. I need to help others, and get out of my own story. Cancer is such a nasty, nasty thief. And just when you think it can take no more, it does.

Here are a couple of studies linking pregnancy with low grade glioma:

"Furthermore, on the basis of these four case reports and other reports from the literature, women with low grade tumors need to be counseled on the risks associated with pregnancy and, more specifically, the potentially increased risk of tumor progression and transformation."
Tumor progression and transformation of low-grade glial tumors associated with pregnancy 

"The present case highlights, for the first time, the unfavorable evolution of DG during pregnancy in six of the eight reported cases. It thus suggests a possible negative interation between pregnancy and supratentenorial hemispheric DG." - Influence of pregnancy in the behavior of diffuse glioma: clinical cases of a French glioma study group (see below)



It was hard for me to write this post, but I felt that it was important for me to share the dangers of pregnancy regarding glioma. I only researched for my type of brain tumor, however in the studies that I read (I only posted two, but there are more if you chose to research further) it referred to other types of brain tumors and it seems as if there's a correlation across the board. Obviously, I'm not saying that brain tumor patients shouldn't get pregnant, however you deserve to know all of the information so that you can make an educated decision. This is, after all, our lives at stake - I mean, good grief, many of these women who became pregnant had evolved grade tumors. Some died within months of childbirth. Risky stuff. Now, I realize that these are all case studies, which make it difficult to assess, since it isn't a clinical trial with a control group. However, it's clear that a clinical trail would be unethical due to the high probability of recurrence and subsequent health risk.

Oh cancer, why do you take so much? You just take, and take, and take, and take. And all the while people look at me and think I'm doing so well, that things are back to normal. They don't see all of the complications, the things that we continue to go through. That it never ends. As if the fear of recurrence, of death, wasn't enough. Man, this life can be a real test in patience, in sanity, of loss, of strength. It's as if we're being asked, how bad do we want to live? Can we overcome all of the trials? Can we stay human, and happy, and functioning, and thriving even when cancer continues to bomb our village? I think I can, but sometimes it's okay to just mourn this life, too.