Tuesday, June 5, 2012

June 5, 2012

One, small, harmless, subcutaneous tumor: that’s all that’s left! The most recent scans showed that of the more than 20 tumors with which we started (including those in my liver and pancreas), just one small subcutaneous tumor remains. I am almost completely disease free! While I was expecting good news, this news is so far beyond anything I was expecting that it has caught me totally off guard. I realize over the past weeks that I have officially started thinking of myself as a survivor rather than as a patient. And the difference between those two definitions is astounding. These latest results are the green light to my life. My thoughts are now dominated by planning for my after-cancer future, rather than by wondering if there will be a future. I can now decide how to shape my life without cancer, rather than find ways to fit my life around cancer. Not that I will ever be without cancer. Even if it leaves me physically, it will forever remain with me emotionally. With a lot of luck, I may not always be a cancer patient, but I will always be a cancer survivor. And that is a badge I will forever wear with pride, with strength, with wisdom, and, most importantly, with compassion. Herr Nietzsche, sie sind richtig: that which does not kill us only makes us stronger. Life experiences are a workout for the soul—no pain, no gain. And for that, I am thankful.

We are in the process of defining our new normal. I am back to work, and Jeff continues to work full time, but we are being careful not to lose sight of a bigger life picture. We are doing our best to stay involved and be mindful about participating in events with a greater purpose. In May, we attended the Melanoma International Foundation’s annual Safe From the Sun walk and fundraiser. The event raised almost $150,000 for melanoma awareness and research. Our team (team Melanoma Mom) won an award for raising the second highest amount of money out of all the teams that participated! We raised more than $11,500 and 86 people attended the event in person as part of our team. Thank you so much to everyone who donated and participated. With special thanks to Dana and Sean for organizing and managing the team (and making the awesome T-shirts). Not only did we, as a team, make a huge difference for the MIF, it was also extremely meaningful for Jeff and me personally and we are deeply touched by the enormous amount of support we were (and continue to be) shown. Thank you, thank you, thank you to everyone who cares about us so much that you donated your hard-earned money to further this cause and took time out of your busy lives to support us in person. Two weeks ago, Jeff and I attended an event with the Melanoma Research Foundation through which we lobbied for melanoma-related legislature. Jeff and I met with Senator Barbara Mikulski’s office to ask for continued/increased funding for NIH and NCI, as well as stricter regulations on the use of tanning beds by minors. This weekend, I also met our state senator, Jamie Raskin, and was able to thank him personally for his support of tanning bed restrictions for minors. He told me that the last time the bill was up for vote, it stalled at 3-3. Unfortunately, much like the tobacco industry, the tanning bed industry has a significant amount of money to pour into lobbying efforts and they were convincing enough to stall the bill this time. Also, new research findings regarding melanoma treatments were presented at ASCO’s annual meeting this past weekend. Jeff attended the meeting for work, and tweeted the findings (as melanoma mom). He continually tweets, as melanoma mom, important information about current, new, and clinical trial treatment options for melanoma. He is a great resource and I urge you to follow him if you are looking for this type of information.

In baby Kai news, our perfect baby has magically turned into a phenomenal little boy, full of smiles, wonder, and uncanny life understanding. He’s absolutely amazing. He is almost 20 months old. I cannot believe he was only 3 months old when this journey began. At that time, I didn’t know if I would see him turn one. But now I know that he will be gifted by my nagging (umm I mean loving and shaping) for many years to come. He is running (which he does around and around the dining room table while yelling “FAST” and wearing a blanket as a cape), is talking more and more every day, knows all of his colors, can identify letters and numbers, and is totally obsessed with books, cars, and animals (he even has a book that has wheels and shows pictures of dogs riding in cars, which I think blows his mind). He continues to be the most perfect baby ever made and I am confident that that opinion is completely objective.

While every ounce of my being rejoices at the success of the TIL IL-12 treatment, the space between patient and survivor is a blurred, tumultuous existence. During the same time we have been celebrating our success, a chasm of emptiness and injustice has been created by the loss of our friend, Jake. Jake passed on Friday, in hospice, with his wife, Linda, by his side. Although melanoma ultimately claimed his body, he remained Jake until the end – never allowing cancer to penetrate his heart or his soul. And that is the measure of a true victor. He lived as he fought, with passion and love, and I am sincerely thankful for the important lessons I learned from him. From Jake I learned that a smile always accomplishes more than a scowl; that everyone is your friend even if you haven’t yet met them; that it is up to you to live your dreams; and that the more love and happiness you put out, the more that will be returned to you. Smooth journey my brave warrior friend. I weep for those who love you, but smile for your serenity. Cancer is like a personal terrorist. It starts small and attempts a hostile takeover of your entire body. It consumes your person from the inside out, racing through your system and showing no mercy. It uses force and fear and violence to control you. It tries to claim your body, your life, your time, and your dignity. But reacting to it is a choice.  We may not have a choice about whether it claims our bodies, but it is up to each of us to defend our hearts and minds. Just as Jake remained Jake, it is up to me to remain Jamie. Thank you for leading by example, Jake, I will forever borrow your strength when my own is lacking.

This journey is not a measured hike through the woods, where, if we just keep walking no matter how tired or hungry we become, we will eventually break through the trees and end up at our destination. This journey is a rollercoaster; a constant, violent propulsion between joy and sorrow, between hope and despair; between existing and living; between gratitude and anger; between power and fear. There is no middle ground; you are constantly hurled from one extreme to the other. It is continuously emotionally exhausting. There is not enough time and that is coupled with knowing that there actually might be not enough time. It is a race to live.  Even after the treatment is over and I know that it is working, it is a race to live. How should I live? What should I do? How do I fit my priorities into my responsibilities? Am I doing enough? How can I help more? How can I quiet the screams in my head that are constantly, unrelentingly demanding that I define my new self? Melanoma has woven an intricate web around me and every day is a struggle to break free. She is my capture. She is my keeper. I try every minute of every hour of every day to annihilate her. But she is my silent partner. She shapes my thinking, she expands my compassion, she forces me to try harder. She shows me that I am stronger and more powerful than I ever knew. She, who is trying to kill me, is showing me what it means to really live. And, in true Stockholm syndrome fashion, I love her. In spite of the horror of being propelled from one unknown to the next, I ride this rollercoaster with my arms in the air, yelling WHEEEE in exhilaration, confident in the fact that it will one day slow to a more manageable speed. And in the meantime, I consciously decide to enjoy this ride, take full advantage of the intensity it provides, and remain thankful for each climb to the top, each race to the bottom, and each life-altering loop-de-loop along the way. I hold onto a confidence that it will continue to lead me to tomorrow and that, eventually, the chaos will give way to a quiet that will offer the foundation for the next phase of my life. And for that I am thankful.

So here’s to NED. After our recent fabulous news, it is entirely possible that the next scans may show no evidence of disease. Come on little tumor, fade away with your friends, we don’t need you anymore. When you leave my body, I will carry you in my heart with the others, as a constant reminder to never ever take anything for granted and to choose every day to be thankful for the beautiful, love-filled life I have been given. I will carry Jake there too, to remind me that no matter what happens to my body, I am responsible for the upkeep of my soul.

Today I am thankful for our awesome scan results; I am thankful for the ever-expanding embrace that NCI and the greater melanoma community wraps around us; I am thankful for the extremely generous gift of UV-protectant clothing that UV Skinz sent to Kai (www.uvskinz.com UV Skinz was started by a woman who lost her husband to melanoma at the age of 32, she is now dedicating her career to creating clothing for children and adults that provides extremely important, highly effective protection from the sun): thank you for the essential gift of keeping my baby safe this summer; I am thankful for everyone who participated through donations or in person as part of the MIF’s Safe from the Sun event with special appreciation  to Brad from EI Home (www.eihomeonline.com) who held a candle-selling fundraiser that raised $1,600 for our team; I am thankful for clinical trials and the extraordinary successes they are creating; I am thankful for our amazing family and friends; and, as always, I am thankful for my best friend, my partner, my soulmate, my sweet sweet Jeff, and our perfect baby Kai. There is no doubt that you will soon be able to outrun me physically, little one, but I promise you that my love will keep pace with you, every step of your way, propelling you toward your goals and pointing out all of life’s splendor along the way. Throw your arms in the air, my wondrous baby Kai, and yell WHEEEE as loudly as you can.

16 comments:

  1. This comment has been removed by the author.

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  2. Jamie, I am so happy to hear the wonderful news!!! I'm confident that your positive attitude has led the way to your recovery. What a wonderful post, thank you for sharing.
    Dale

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  3. Congratulations, Jamie! Your expression of how this disease affects the patient's psyche is spot on. To NED!

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  4. Jamie, I'm not sure if you remember me (Erin Strine) but I used to work with you at MMG. I have been keeping up with your blog and have been thinking about you & your family. I was so happy to see this latest update and it served as a reminder to me that I needed to schedule my annual skin check at my dermatologist – so thank you for that! Wishing you all the best as you move into your new life as a survivor!

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  5. I am so happy for you - very, very happy. You probably knew before all this that each day is a gift, but you've proven that now. Enjoy every moment and give yourself a break now and then, new normal can be harder than it seems - just keep focusing on the gift. So happy for you.

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  6. Jamie,
    Congratulations on your wonderful news. You don't know me but I have been following your blog since last October when my husbands melanoma returned. Unfortunately last month he passed away at the age of 33. I cannot put into words how you and your blog have inspired me.

    I would like to thank you for sharing the information about the Safe From The Sun walk. As we are local, our friends and family were present walking in my husband's honor. Ryan and I were unable to attend, because he was hospitalized at the time, but I'll definitely be in attendance next year walking in his memory.

    Your amazing strength and determination are an inspiration for all and seem like a wonderful person. Keep fighting and writing!

    Megan

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  7. Sun protection is important, especially when you have fair skin like i do. I found this color changing bracelet by SolarActive that changes color in the sun when the UV rays hit it. This is one of the ways i stay sun aware and sun safe. The bracelet seems to change colors faster or slower depending on how much UV the sun is emitting that day.
    They have color change tshirts and color changing beads as well. I got it at the SolarActive website here: http://www.solaractiveintl.com I always recommend my friends to get products like these since they really help to be sun aware. Thanks for the blog and keep up the good work I love reading! You are so inspirational! :)

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  8. This:
    "So here’s to NED. After our recent fabulous news, it is entirely possible that the next scans may show no evidence of disease. Come on little tumor, fade away with your friends, we don’t need you anymore. When you leave my body, I will carry you in my heart with the others, as a constant reminder to never ever take anything for granted and to choose every day to be thankful for the beautiful, love-filled life I have been given. I will carry Jake there too, to remind me that no matter what happens to my body, I am responsible for the upkeep of my soul."
    ...is the consummate, pluperfect defeat of cancer.

    SOOOO much love to you and yours, Jamie....and thank you for your trailblazing path to NED via the IL-2 treatment...our first cycle down, and with scan-verified shrinking lung tumors for my man, I can scarcely wait to raise an e-glass of thanksgiving with you to NED....for a LONG LONG life of love ahead!

    Continued health to you, and continued clarity....cancer's greatest gift.
    <3

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  9. Hi Jamie,
    I've just found your blog and have added it to my "They Dare To Care" list of fellow melanoma bloggers (stage 3b). Prayers for you and your family that you continue to celebrate being NED!
    http://letsgivethanks.blogspot.com/2012/01/they-dare-to-care.html

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  10. Thank you for telling your story. SO encouraging to know that there are treatments out there that do work for some. I am stage 3c and currently in a clinical vaccine trial. You are a blessed woman. Life is a true gift from God.I am thankful to read your story today.
    May God continue to bless you!
    Jessica

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  11. So amazing reading your journey! The process, the journey, the gift of life is so sweet and I am grateful you are walking back to the place of health. Continue in this place and to enjoy every moment life has to offer you! Peace and love my dear!!

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  12. Jamie,
    I hope you are well. Tired, I am sure, chasing after a now 2 year old! those are special days.

    I found your video story on timesequalslives and was moved. I am a friend of a 8 year stage 4 survivor who one was of the first to do til at NCI years ago. She is now on to other clinical trials.

    I thought you might be very interested in her organization of which I am on the board. It is Skin of Steel. Our primary objective is to start a national primary tumor bank so that the great research and advances that were made with breast cancer after such a bank was established, can happen for melanoma. Check out the website: skinofsteel.org.

    You two fighters should meet or talk! You are cut of the same fighter cloth.

    Take care,
    Karen Hirsch

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  13. Hi Jamie,

    I have a quick question about your blog, would you mind emailing me when you get a chance?

    Thanks,

    Cameron

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    1. Hi Cameron, I can't email you back through the blog, but please email me at melanomamomjg@yahoo.com. Thanks!

      Jamie

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    2. Congratulations, Jamie! So happy for you and your family. Praise God! I first heard about your story through my dear friend Jake. When I read your blog for the first time I was in tears for you. As a mom, I couldn't imagine going thru what you went thru just after being blessed with a new little bundle of joy. It broke my heart! But now I rejoice with you as you are one tough melanoma warrior, survivor and now a mom & wife who can get on with living and enjoying your family. So happy for you!

      I was by Jake's side for a few days at the end, up until May 30th when I had to get back home to Dallas. He passed in the very early morning hours of June 1st. It breaks my heart to have lost him. I hurt deeply for his wife and children. He means so much to so many of us. <3

      May God continue to bless you and your family!

      Hugs,
      Greta

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    3. Oops, my comment wasn't supposed to go under Cameron's post. I'm so sorry about that.

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