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.

Jess

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

12 comments:

  1. I would never of thought to find a doctor or researcher's email address and boldly contact them. I has never occurred to me. That's pretty far out, but it's true, there's nothing to lose. You never stop amazing me with your tenaciousness. Thank you for sharing.

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    1. Thank you anonymous! It sucks that we have to go to these extreme lengths to find answers, to uncover the "fine print", and I am really glad that my message resonates with you. And thank you for reading! :)

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  2. Oh I HATE the name of your show, but give you major props for doing it. I needed your post today. I have a meeting with my oncologist on Monday. I have hard questions to ask. It will be awkard and uncomfortable and right now I am soooo tired of having to go into offices ready to battle. But now I am ready to do it again. Thank you. Your words are a gift.

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    1. I hear you AJ. It's exhausting! But your comment is best thing I've heard in so long. That I could recharge you to advocate for yourself. Hell yes, that makes me feel wonderful!! It's exactly my goal, so thank you for sharing. You just made my weekend. Good luck at that appointment on Monday, you already have the boss attitude that it takes.

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  3. When you first responded to my email for help, I was sitting in the pediatric waiting room of Weil Cornell - as it was the only place I could get a wifi signal - waiting to see if Alison was going to survive the night. You were kind and generous and I was, and am, still touched that you cared about my wife.

    I hate the name of the show. I hope we'll get to meet someday and I can introduce you to Alison. Let our last days be far from today.

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    1. Hey Logan! You're so sweet. That means so much to me. I hope we get to meet someday too. You are a shining light in the BT world (and probably everywhere). When you go in, you go all in, and it's really beautiful! A hug for Alison and your sweet baby

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  4. Jess you never fail to inspire <3 Your love story is a beautiful one, but to those who are in a similar situation you inspire us to dig deeper and challenge the standard of practice. Thank you for caring enough to share. Can't wait to see the show even though I don't care for the title either. It's odd that before you are given a diagnosis you rarely realize that none of us are guaranteed tomorrow, illness or not. Praying 4u

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    1. Hey Michelle! Thank you. I thought I knew the fragility of life before I got diagnosed, but I had no idea. I'm grateful to have this new perspective, but it also seems to have enhanced my BS meter. Life is precious; opportunities are precious. We are not our circumstances, and we have choices every day on how we choose to perceive situations. I struggle with it at times, but then a higher power wakes me up and reminds me how fortunate I am in every moment. I hope you're doing well, and I really appreciate your prayers! xo

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  5. Your words of wisdom are always an encouragement and so profound. As with the others not fond of the title but none of us know what tomorrow holds. I lost my almost 3 year old son in a car accident. We were driving down the road and in a heartbeat life changed forever. The question I asked my mother was "Why did God give him to me if he was just going to take him away " Her answer was "Would you rather have not had him at all" It's something that has been with me all these years since. Be grateful for today and those we love. Most people think "things" happen to other people until they are faced with a life altering things themselves.
    Bless you sweet Jess, your precious Dan and family
    Is it on Channel 11 in the Seattle area ? I think that is the CW channel

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    1. Hi! Holy cow, what you have gone through. The amount of pain. I am so very sorry! The fact that you're able pull yourself back up, that you haven't lost your mind is amazing. I wish I could give you a hug.

      You are right, it is on The CW channel, and on their website (I believe). Here in Seattle, The CW channel is number 11. I believe the first episode is airing on Wednesday.

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  6. Thinking of you with all my love!
    Maleka

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