Thursday, July 28, 2016

We All Need A Wizard

Dang it, why are there so many cool people out there? I just finished an interview with Refinery29, about the TV show, My Last Days. Yes, that is the horrible name chosen to document six different people diagnosed with a terminal illness, one of which is my story. It makes my body retch to even type it. I physically hate the title, with a palpable rancor, but I understand they're trying to gain the biggest viewing potential, and that potential could help people. It's all about pulling people in, about shock value. It's the world we live in. I just don't believe I'm in my last days. I don't describe myself as terminal, although that's exactly what I've been told. That I will die of this. But I know so much more than I used to. I know that a cancer diagnosis is a hopscotch of jumps, just to find a new treatment to outlive each phase. There are no guarantees in life, and that means we don't know what our life has in store, for example, when we will die.

So, anyway, the production company set us up with a public relations agency that's helping us understand the marketing/promotion process which includes doing an interview or two. Back to my point, I was partnered with one of the PR peeps, and she is a true wizard - one of those spirits that you instantly connect with. The Refinery29 interview this morning held the typical questions, When were you diagnosed? How has this impacted your life? My wizard had addressed all of us subjects in a recent conference call and one specific point resonated with me. I started thinking about what I want my message to be. If I can sum up my goal in discussing my cancer journey, what is my ultimate point? And in a conversation with my wizard, I finally figured it out.

Some people have to talk things out to solve their problems, others need quiet solitude. I tend to need to write. And prompting really helps. So, in talking to my wizard, I evolved. And that is what's really cool about people. Those folks that encourage, and engage, and spur us to harness our passion. And after free writing the email below, errors and all, I realized, in the most concise form as of yet, my true goal.

Good morning [Wizard]! Sorry for the delay.

I would love your input on this interview. I'm excited for this opportunity, but it definitely has me thinking about what I want to get across. And it's not as simple as I thought it would be. The message on my blog is about people taking control of their health, that we as patients are so much more - we're medical consumers. That we have control over the doctors and medical centers that we choose and that we deserve respect. That doctors are not rated equal, that not all centers can offer the same treatments. That you have to protect yourself, and advocate for your rights. That no one has more of a vested interested in their health then you. To not let anyone dictate when you are out of options, when you're going to die. I have no idea how the show will be edited, what they will focus on after several days of filming, my fear is that it will be more about my husband and my love story, which is glorious and magical, and unique, but I want to help people protect themselves. In 1970 1 in 30 would be diagnosed with cancer in their lifetimes, now in 2012 it is 1 in 3 for women and 1 in 2 for men. And survival rates are still dismal for most cancers. We have to prepare ourselves to be independent thinkers. Sometimes we need to hear that it's okay to ask tough questions, demand the best care, to not be afraid to ask more of our doctors. I'm not as interested in my own story, but maybe that's just because I'm so used to it.

Just writing this has helped me find my own direction, what I'm really passionate about. God, the things I've learned. I wish I could help people more. Just even the fact that when I don't understand test results, and my doctor's explanation isn't enough (as they are not trained in medical readings of scans), I will cyber-stalk the name on the report of a scan and cold contact them to get more answers on my scans. And the medical readers are always incredibly gracious, and I get better explanations of what's going on in my body. Or I'll research a new treatment, and again find the email address of the head researcher and cold contact them with questions about dosing, or side effects. Most of the time I get responses and enter in wonderful conversations. I then gain more resources as the researchers become colleagues, I can ask them further questions about related research. Sometimes I never hear back, and that's okay too - but I figure, what will it hurt? Might as well give it a shot.

I dream of a day when patients are treated with respect, not pitted, not talked down to, that we start to get treated like customers, because we are. We are paying customers with our medical, whether it's out of pocket, or paid for by our insurance. We should have more control.

Okay, that was one hell of a diatribe, and that was me trying to be minimal. Sometimes patients just need to hear that it's okay to question, to demand more, to realize that we're getting shoved into boxes with antiquated treatments. That we deserver personalized care based on our specific pathology. Nothing will change until we demand it.


In talking with others, those souls who provide a safe haven, a pure understanding and curiosity of another's plight, we are able to open further. To share the seed of our truth. And if you're really lucky, they not only nurture what's been planted, they rejoice as you flourish. My hope is that by sharing my experiences, the things that I've learned and continue to learn, it will help others find their truth. To not be afraid of the answers, of going out on a limb to find their best health.

I continue to be blessed by people that pop into my life, making everything I do more fun, more authentic, and I cherish them.

I feel more connected to others every day, and in that, I feel more alive.

Jessica Oldwyn wedding photos
From our episode on My Last Days

Friday, July 15, 2016

In All The B's

*Written somewhere over the midwest, as I flew home from NYC late last night.*

I never anticipated growing up. I mean, who does, or we would choose to wear sunscreen at age 4, and I've never seen a child apply SPF by choice. When you get this crazy diagnosis it's like living in an alternative universe; you're instantly catapulted into the raw threads of life. You're 29 and 99, all at once, wondering where your life went.

My favorite part of cancer is that there's people whom I've fallen in love with. They're kind, they're gracious, they're real, and explosively smart. They're honest, we quip, tease, and I can't believe that somehow my life collided with theirs. I know that I would have crossed paths with other people in my sliding doors life, and they would have been deep, and knowing, encompassing, challenging, hilarious, so I know you don't have to be a cancer patient, or caregiver, to be "enlightened" - yuck, I don't even like that word in the context. I'm swirled with people of all backgrounds, different histories, and the longer I live, the happier I am - if that's possible. Who would pick cancer? Not me. And I'm not convinced that I needed to get cancer to meet these souls. We could have met when we were in a shared taxi, at a resort, on a hiking trail, in a public bathroom. I mean, come on, you guys know me - a person is just a friend I haven't met yet.

I'm expected to do another brain surgery in Oct, and that was put off from May. I kinda want to point out what a bad girl I am, but it's not that simple. I needed proof to make sure that when they saw into my skull again, for the 4th time, it's necessary. I now know 7 different patients who had brain surgeries for recurrence, and it was in fact necrosis, inflammation, or slowly growing scar tissue. Crazy!! No spank you. (Granted, over the past several years, I've probably talked to hundreds of patients and caregivers - so it's not exactly common.)

I should have already gone under the knife, and I know from experience that I should be panicked; I could have already lost my crap. But you know what, we will die when we die. Ya, sure, duh, if you love those around you, you don't want to let go, and I don't know what has changed, why I'm chill, but who cares, all I know is that I will live my life not in fear. And more than ever, I'm not focusing on what I do not have. We are out of treatment money, yet I have never been more at peace. How weird! I'm not going to look a gift horse in the mouth. Maybe I won't even look at any horses.

I'm literally flying home from NYC as I type, no treatment rendered. A risk from international treatment issues. My point is that I was listening to a couple (just a few) survivors complaining about the fact that we did not get our most recent treatment on time. Not all, but several, were pissed because they had vacations scheduled. Weeks off. Do they not see the projects we drive by on our way to the clinic? Every time I blow through South Jamaica, Queens, on my way to and from treatment, I think about all those apartments, those high rises. Statistically, there are people in the projects that I pass and I doubt they're getting any cancer care, in fact any medical care, and when I hear those complaints I'm floored. It's not my role to teach people, to change others, but man is it eye opening. Fuck you guys, seriously, what does it take for people to realize how gifted we are? I'm not saying we can't complain about circumstances in life, but know your audience. Put things in perspective.

We are the privileged. Yes, my treatment was delayed by several days. No I wasn't able to stay or come back. Everything is a give and take. 

Am I scared? Bheh. No. Yes. Sure, but not really. My fear is to leave Danny. I'm convinced that if I die before him, I'll haunt him in the bees, the butterflies, the bats, the butterscotch candy he sucks on. In the burkenstocks the person next to him is wearing. He will see me in the laminate countertop on the ferries as he heads back to our home island. In the whip of the wind against his face as he gets into his truck for work in the morning. He'll see a red summer dress and think about my silliness. Is silliness even enough to accurately describe? He'll see a goober dancing so ridiculously in the grocery store that I hope he'll dance with them to not leave them hanging. 

But worse would be if he left me. That would be unbearable.

See, I have it easy. :)

A photo from my First Descents kayaking & camping trip earlier this week.
No need for a filter, life is stunning as is.

Friday, July 8, 2016

Half-Assed Update

Hi Friends,

Sorry for the long hiatus. To say it's been a crazy month would be an understatement. 

I've been on a few treatment wild goose chases, and some strong leads. I have about an 85-90% lock on my new protocol, pending any changes. (And there's always changes.) I can't get my fingers on everything immediately, but I'm headed back to NYC next week for a previously unscheduled treatment and meeting to address a few ideas. 

It's been a highly stressful time, but I'm still having a lot of fun. It IS summertime, after all. 

I've wanted to do an update, but things were up in the air. And, I don't really have the time to emote, or the energy to write just to write. It's been taxing, and when I wasn't scrambling, contacting doctors, radiologists, researchers, patients, I needed to decompress so that I could wake up and do it all over again.

I have no clue if this new protocol will be enough to stop the tumor growth - oh wait, I think I haven't even told you that the tumor is, by all consensus from every single one of my doctors, clearly growing again. Crap in the pants is about how I feel about it. 

I keep wanting this tumor life to be over, to not live in limbo, but oh well. It is what it is. I hadn't said anything on the blog - at least I don't think I did - but Dan and I had started the process (very premature stages) of getting approved to adopt foster children. Because I had been stable for over a year, it was a legitimate possibility. But I keep learning that my life is not really my own, and I don't have the luxury of planning. I realize typing this out that I may sound sad, but I'm not. It's just a fact. 

Each recurrence I am reminded that I need to just be grateful to be alive, to be here in this moment. That fact has to be enough for this life. Good thing I've been doing a damn good job of it. I'm still just as social, still walking with my group as much as I can, jogging, gardening, doing weekend trips with friends. It's not that bad to live in the moment, to tell you the truth. Maybe it's like those crazy fools that are adrenaline junkies. I'm not to that level, but I can appreciate their hunger.

Our lucky Independence Day jelly in FH. Those whispy little stingers. Just like life, beauty always comes with a price.

Also, I want you guys to know that when I run into people at the grocery store, or the coffee shop, and people introduce themselves, or say hello after years of not seeing each other, and they tell me they follow the blog, and that they care about me, about us, it's about the most gracious and heartwarming thing. In those moments I just want to reach out and hug people. And sometimes I do, and other times I don't want to freak them out. So thank you, for caring, and for telling me. It makes me feel incredible!
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