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.

19 comments:

  1. "SO CAL" PattiJuly 15, 2016 at 2:25 PM

    I LOVE YOU JESS!!! Loved your blog and the "special" way you have of making even the good, bad, or uncertain times seem doable! I still have complete faith that you will conquer this beast and have a long, happy life with Danny!!! Love to You Both,"SO CAL" Patti

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    1. Thank you Patti! I love you very much. Thank you for understanding me. Xoxoxoxo

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  2. Jess, I must say you were such an amazing light amidst a crazy NY moment. It was a pleasure meeting you and although our conversation was brief I was so at ease with our chat. Out of ever airport, every concourse and every little bar I sat behind you. What are the odds? I am half way through your blog journey and I just want you to know I too am "team Jess." All the best-

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    1. Kermit, you were a calm force, even though you were on the tail end of your stressful trip. We all give off a specific energy, and your positive aura was palpable. I am really flattered that you went to the blog, and I am honored that you're enjoying reading about the madness that is this blog, and my life. Thank you! Xo

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  3. Jess, You make my heart ache, swell and melt all at the same time when you share your life's journey with us all. I have so much love for you!!

    Maleka

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    1. Thank you Maleka! I shocked myself by dropping the F bomb on the blog, that's a first. Hopefully it wasn't too offensive. I still think of you all the time. It. Was wonderful seeing your name! I'm sending you a big hug right now! Xo

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    2. Never ever could you offend me!! You should see how I talk to my inept electronics! LOL I am surprised they don't throw themselves out the window when I yell at them! ;) I am just so thankful you are YOU! More of a gift to me than I will ever be able to put into words!
      All My Love and Hugs, Maleka

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    3. The feeling is mutual Maleka! xoxoxox

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  4. Replies
    1. Ditto! (Gotta love those Ghost movie quotes.) xoxox

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  5. Hi Jess, I stumbled across your blog and have been following your journey. You are an incredible woman. You are so strong and so special. Wishing you well as your journey continues.

    Crista

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    1. Crista, you are so sweet! Thank you. And thank you for commenting, it makes me feel incredibly grateful to have your support. There isn't adequate words to express my gratitude, and "thank you" doesn't really cut it, but hopefully you know how much your kindness means to me.

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  6. I absolutely love, love, love this post! I relate to so much of it. I could also, potentially, be facing a 4th brain surgery (i.e. we don't know if the image on your scan is necrosis or a new tumor, so surgery may be down the road...ugh). Yet, I always, always remind myself to live life to the fullest. I don't really worry about myself as much as I worry about my husband, and if the day ever comes that he looses me. Even though I'm ultimately not in control of what happens to me, I convince myself I am. However, my husband just sits there and watches this all happen, feeling helpless. I hurt more for him than I do for myself. Thank you so much for this post. PS I am an FD Trib too! Life definitely is "stunning" and I can't accurately put into words what FD brought to my life. 1, 2, 3, - FD! xoxoxo

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    1. A fourthy - like me? Whoa we have a lot in common! That issue about not knowing if it's necrosis, scar tissue, inflammation, etc. have you ever had a f18-DOPA pet? It can tell the difference! Just saying, in case they push surgery. It's a great scan to verify (I can count on two hands the people I know who have had unnecessary brain surgeries because it wasn't recurrence, but necrosis - they didn't know about the f18-DOPA). I get mine at UCLA, but I think there's one at the Mayo clinic. Also, there's one in Victoria, B.C. I'm sending you SO much love - to both you and your husband. :) If you're in the area, we should trib-out! (Like geek out, but outdoors.) xoxo - When's your next scan?

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  7. So impressed with your strength and attitude in this journey you are on. You continue to be in our prayers as well as Dan and your family. We sobbed as we read your words at the end of your blog regarding your precious Dan having too faced the possibility of losing my husband to a brain tumor. You are indeed an encouragement to many sweet Jessica.

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    1. Thank you for the love, and for the prayers. I think the only way I'm even remotely sane is because we have swirls of prayers surrounding us. I appreciate you!

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  8. This is so brilliantly written Jessica! I am at awe at the beauty of your spirit. I always think of you, and that gives me solace during my family's BT journey. I too wish I came to know you through better circumstances, but I still believe in miracles. Stay gold xx

    Reem

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    1. Thank you Reem! That is incredibly kind of you. I'm grateful to have met you, and I really hope your relative is hanging in there. And I believe in miracles too. :) I pray for a miracle for your family!

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    2. Thank you so much Jessica! Same here <3
      Reem

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