Does Altruism Exist?

I'm sitting at the JFK waiting to fly back home and wondering to myself how I got so fortunate in life. I just spent the night (as I usually do) with my friends Nate and Miraim, and baby Sol of course, and just being around them is calming, and fun, we talk about everything. It's engaging and energizing, and refreshing, and fills me with joy. Flash to today where Sol, Miriam and I met up with our friend John (Steph was stuck at work) for lunch and again it's the most invigorating, expressive, comprehensive friendship. How did I get so lucky to live this life and be surrounded by such amazing humans? These beautiful souls who think deeply, whose hearts are profoundly touched by human suffering or the human cause. I think they all see themselves as just normal people, but I see them as the glue that keeps humanity real, and kind. I hear their words, as they talk on any subject, and they care. They have such huge hearts, it's the most lovely thing.

The shot went well, fabulously well, Dr Germany said something along the lines of, "We're on a winning team" in reference to my protocol. Man that's a fantastic thing to hear. I don't know why I get to live this - I don't even have a good word for it - blessed life, but I am grateful for every second. And along with living a life that is true to me, and my evolving views, I will also continue my mission to help other tumor patients achieve health, and longevity.

The bandaid peaking out reminds me of today's life giving treatment

The thought has crossed my mind that now I'm stable, I could say screw it and just go live my life (while obviously continuing my treatments). I could stop blogging. I could unconnect from social media and just garden, or find a career that could withstand my seizures, and time off to travel for treatments. I could turn my back on the brain tumor world and focus on anything, or everything, else. I could just spend my time in an unrelated field, or focus on other endeavors, but the truth is that I feel the need to pay it forward. I am driven, compelled, to help others who are just starting their journey, or perhaps are dealing with a relapse/recurrence. I could not turn my back on family, and that's who you all are. You are my brain tumor family, and I will not abandon you. It would be easier, probably, and less emotional, less stressful, but who would I be if I didn't help those in need? It's not the kind of person I want to be. We all have choices every moment of every day about who we are and how we're going to live our lives. I have somehow navigated my way through this crazy diagnosis, and although I'm not guaranteed tumor stability for life, with this path that I'm on, it's working for now and I know I can help others. I've done it and will happily continue. It's actually even selfish sometimes because it makes me feel good when I talk to another brain tumor diagnosees and help them figure out their own plan, because everyone is different. Each brain tumor patient can blaze their own path; they can take little bits here, and little bits there, from other patients who have been successful. When I see, or hear in their voice, the determination to live, it fuels me. When I share what I know, or connect them with others who can also give valuable information, I feel intrinsically good. Is there such a thing as altruism? I really don't know.

So, even though I worry about you guys, all my tumor friends, crying for you at times, I wouldn't change a thing about the responsibility to help. I know this is a choice. I see pieces of myself in you, I know your struggles, I know your fears. Know that I'm here, and I will help you in any way I can.

Moving Up The MRI

Oh man, my face has broken out into blisters. Good grief, I am a ball of stress. This always seems to happen in the days/weeks before an MRI. Seriously, sometimes I feel like I'm a woman trapped in a neurotic miniature chihuahua's anxiety problems. Between the seizure and my skin, I am getting some major warning signs that I need to get this MRI over with. I'm scared, like usual, and no matter what I do (nap, meditate, walk, garden, clean, work) things do not seem to be getting better. Last night I was texting back and forth with my bro, and I sent him this quick pic to make him laugh (and illustrate the blisters).

What is it with skin; when you have skin problems it cuts you to the core. And hell, it isn't even necessarily the vanity, these suckers hurt. To try and abate the issue, I just called University of Washington to push up the scan schedule. I should be getting a call back within 24-48 hours to see if I can just get it over with on Saturday (it was supposed to be April 4th). That would give preliminary results on Monday. As you guys know, I get my brain scans here in Seattle, then I mail the disk to UCLA and they usually submit to the tumor board. I tend to get their results in a few weeks, but since the scan takes place at UW, I can head to the UW medical records department and get a copy of the radiology report. That would give me the results I need. Good or bad. Scary or not. I could have answers by Monday. Monday. Wow. That just made me lightheaded.

Isn't it weird how scary it is to get an MRI when the truth of the matter is that it's just a snapshot. It's a peek into whatever is already happening in my brain. The MRI won't change anything. It's only a fancy internal camera.

Do I feel any worse? Do I have special symptoms? No, not really. I'm always tired, but I think that's pretty standard since the first brain surgery. What will I do if I have a second recurrence? Jeez. I don't really know. I have a file in my email account that's labeled "possible treatments" and I'll need to review that information this coming week. Worse yet, what if all of these off labels drugs, and different treatments have encouraged a more aggressive tumor? What a nauseating thought. Well, if I do have tumor growing back, and it's uptaking contrast dye, that usually means that it would be a higher grade. And if that's the case, then eff bomb. I guess we'll scramble for a new path, or stay on the same path but pack on additional treatments.

What a weird life I live. I'm constantly in troubleshoot mode, always scheming for backup plans, always preparing for surprises so that I can be ready. I never want to walk this earth, with this diagnosis, unprepared. It's interesting, I read an article earlier today about a woman who was diagnosed with GMB (glioblastoma multiforme - stage 4 brain cancer) who went to Duke for an immunotherapy over 9 years ago. She was quoted saying that her father (or maybe it was her grandfather) beat cancer twice in his life and lived to almost a century. His trick was to go back to living life, and so that's what she did. Man that sounds nice. I wish I could do that. I wish I could get out of my head, but I can't. What a beautiful choice to make. Of course, if we all just went back to living our lives after cancer treatment, and just did what we wanted, we might not have as much research. We might not see as many advancements. If we don't drive demand and share information, and keep this momentum, then what? I guess it would work if cancer care was more effective. But the truth is that most brain cancer patients die, and if we all just went back home and enjoyed ourselves, most of us wouldn't be here.

That woman was a part of an amazing clinical trial. Lucky for her she was in the treating group, the placebo group patients are all long dead. And the majority of the others in the treating group are also dead. So maybe she just got lucky? There's always a small sample that responds to treatment, at least for a portion of time. And for the record, I don't mean "lucky" in a snarky way. I am relieved that her treatment worked. Does everyone have to become an advocate? No. That would be crazy for me to say. People have complicated lives, different stories and responsibilities. As my mom would say, "Do what speaks to you." We all have different causes that we believe in, and just because you get diagnosed with brain cancer doesn't mean that it has to become your cause. But, man we can move mountains together. What if she started spreading the word about how well her treatment worked? What if she mobilized funding to run a second clinical trial to create more survivors? Of course this is all easy for me to say, I mean, what have I really done? But the truth is that I've been using morphing cocktail approaches which means I can't pinpoint just one thing on my protocol that has produced my stability. If I could specifically credit one treatment for my success, you'd better believe I would be trying to figure out a way to get it to the masses. Instead, all I can give people is critical thinking, hope, friendship, and resources.

There is no wrong way to handle your life, your cancer. I hope I'm not coming off judge-y. I guess the perfect fix for me would be a little less cancer cancer cancer, and more just live my life. It's a balance,  a very important balance (says the girl with blisters on her face), but my mantra, or more appropriately mission statement, is, "An advancement for one patient is a benefit to all patients." It's actually a statement that I made to a caregiver in an email recently. And it's exactly how I feel. Even though I'm not great about correspondence (if I was to respond to all emails, calls, texts, comments, I would be stuck on the computer or my phone all the time), I work very hard to help connect patients with the information and resources that they need. If I end up having a clean/stable MRI next week it will be just shy of five years from diagnosis. It would also be 2.5 years of being stable. Oh man as I write this I can taste the desire for a good result. I can viscerally feel it. Anyway, I have worked very hard to help people, and I will continue to do so. You all have helped me so much, and continue to help, and my gift is to give back. One of my favorite wonders is the humanity that we share. That we can do so much more together as pairs, as teams, as groups. We're better together.