Thursday, September 13, 2012

The Pleasure of Being Alive

I'm on hold with Jet Blue, figuring out flights. I still don't know when I'll be able to fly back home, but I'm paying for refundable tickets so it should all work out. I booked different flights for Dan already too, and that makes me really happy :) Dan's taking some time off for the surgery and recovery. It's a huge relief that Dan will be with me. He makes me laugh, nurtures me, and puts me at ease. I don't know if you guys remember, but after the last brain surgery, Dan would scoop me up and put me into a bubble bath. He would gently shave my legs and armpits. He coordinated over 80 pills daily, all of them falling at different intervals, even through the night. Dan did not sleep unless I slept, and even then he was so worried about me that he would be taking care of things around the house like food, or laundry, or just laying there softly cuddling me. I never thought I would be as lucky as I am. I never thought I could love someone this much. He's the most gentle and kind human I have ever met. He's amazing. This whole thing is crazy, but I'm becoming more and more ready, not only with the planning but also emotionally.

This is an amazing opportunity. It's the treatment that I wanted, with the best results. Originally, I was going to fly to Germany and do the same treatment. The only difference is that they were going to try and use my old tumor tissue, the one from 2.5 years ago. The problem is that the tumor tissue can morph. So, to have the best success rate you need the freshest tumor tissue. This clinical trial fell into my lap. It landed via email from my brain tumor fighting buddy Jessica. I had written off the trial because I thought that I had to do chemotherapy or radiation - or both - in order to participate. And now, here I am, I'm included in the trial, with the possibility of the absolute best results (I've read that the German treatment is 20% less successful). This trial does not come without costs. There's the cost of the brain surgery, hospital stay, all the medications, all of the scans (MRI, fMRI & DopaPET), all of the testing (pre-surgery language tests, cognitive tests, & surgery clearance), in fact I can't even think of all the costs at this point. The only thing that is free is the actual dendritic cell shots, of which there will be three. And, above the financials, there's the physical cost. We will not know the true amount until after the brain surgery has commenced. I won't feel comfortable until at least 48 hours after the surgery. Last time, I was fine when I came out of surgery, but within 24 hours I started to deteriorate. That's when my duramater peeled from my skull and a blood clot formed in the tumor cavity, and that's why I had to have a second emergency brain surgery. I'm keeping my fingers crossed that I won't have the same complications, or any complications for that matter!

I have to run out the door, literally, to a hair appointment. My final trim and tint before the surgery. I'm opting to keep my hair, although they have to shave it in certain areas. I'm hoping to do a Donald Trump comb over :) We'll see how THAT looks. I might get sick of the crusty blood in my hair and the scab could prove difficult in that birds nest, but it's worth a shot. Yes, hair does grow back but unless you've shaved your head you don't understand what it's like to be bald and to deal with the horrible phases of grow-out. It's something I'd rather not experience again. I probably sound silly, but there are things that you can control, and there are things that you cannot. I like to control my hair. I like having the option of wearing it curly, or straightening it, either way at least it's there :)

Could you guys do me a favor? Could you please, after you read this, choose to go for a walk, or a jog, or do a push up, take the stairs, park further away from your destination, and then take a moment to thank your legs, your feet, and your body. After the brain surgery I will not be able to run for quite awhile. I will not be able to get my heart rate going or it will cause headaches and such. It will take time for me to heal, to ride a bike, to hike a hill, to push myself. Over the past 24 hours I've ran 14.5 miles because I'm so grateful to have the option. I've been jogging around the lake, the neighborhoods, like a complete goober smiling at the dog down the street, and his neighbor the calico cat whom I respectfully named the mayor of Green Lake. I'm breathing deeply, enjoying the pain in my muscles, soaking up life. Please join me by doing something that gets your heart going. Please take a moment to thank your body. Please take a moment to truly enjoy being alive.


11 comments:

  1. I went for a walk this morning, so I am going to do something that makes me feel super lucky. Call my dad. After his lung cancer the doctors found a cancerous tumor in his liver, it was too large to operate, but they used a fancy direct chemo and now that's gone too.

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  2. It's a Crossfit night for me, so I'll definitely be moving tonight. As I do so, I'll be sure to think good thoughts for you, Jess! Healing thoughts, quick recovery thoughts, and no complication thoughts! Be well, be happy!

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  3. Saying my prayers for you! Stay positive. :)

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  4. As soon as this darn inversion lifts in the valley I am on it. Much love and healing vibes to you Jess. Xoxo Sara

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  5. Will do..... as soon as the smoke leaves our valley...

    Until... then.... prayers to you..

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  6. Jess, you may think you are a lucky woman, but Dan is also lucky to have met you, the amount of joy you bring to peoples lives is tremendous. Stay strong and hang in there.
    John

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  7. "So Cal" PattiSeptember 14, 2012 at 8:17 PM

    Thanks again Jess for always reminding us how special it is to enjoy life everyday! Due to my feet problems I could not go out and run, but I did some tai chi moves sitting in my chair! HA! Keep your chin up and keep looking forward- all will work out fine!!! Love, "So Cal" Patti

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  8. Trump dooo or Demy Moore shave you will make it work. Thanks for the suggestion to get back on the olyptical machine tomorrow...Today I will do 5 push-ups...first in 15+ years!

    Thanks for bring so inspiring.
    Rich

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  9. We ran to the Hawks game this weekend - GO HAWKS!!!! XOXOX.

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  10. I am SO acing this one. I think of not only you, but every person alive that would give anything to be able to run or even walk. That would be grateful to feel the burn in their lungs and muscles. Every. Single. Time. I workout. It's my motivation. I always send extra love your way when I know you need it. But see how that works? I get something out of it. Oh-so freaking awesome. :) Starting over is something it seems everyone is so scared of. You know what you're up against and you've already got your mind set on your recovery. You've got this!

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