Thursday, March 15, 2012

March 15, 2012

I’m sorry it has been so long since my last post. But cutting right to the chase, the IL-12 is still working! My scans last month and scans today both show that there’s nothing new, everything is still shrinking, and some tumors are gone completely. Such wonderful news! I knew it would be good news again. I’m lucky enough to be able to feel some of the subcutaneous tumors, so I could tell they were getting smaller. Of course there was the always nerve-wracking possibility that it had spread somewhere only the scans could see, but thankfully that is not the case this time (and I’m sure will continue to be not the case). Both today and last month, I had my scans the same day as my clinic visits so I only had to wait about an hour for my results, which was great. We did not have the usual grueling night of worry between scans and results and for that I am thankful. When it was time for our clinic appointments, both times Dr. Miller came to us right away with the good news. 
As we were about to leave last month, Drs. Rosenberg and Yang entered the clinic and saw us standing at the desk. They had big smiles on their faces and told us not to leave, they wanted to talk to us. So back to the room we went. When we got back to the room, Dr. Rosenberg told us how happy he is that the treatment is working. I know he’s happy for us because he wants the best for us, but of course he’s also happy that his treatment is showing good results. He told us he wanted to take one of the tumors on my back that was easily accessible, and use the lymphocytes in it to grow more TIL just in case we ever need it. He said that he thought it would be a great idea to take cells we already know are working and replicate them “just in case” for the future. They also wanted the chance to look at the tumor to study the activity going on inside. It would be their first chance to see their cells killing a tumor and, therefore, very interesting to them.  So we agreed, of course, and they did the surgery the next day. It was an easy surgery; just a local anesthetic and I was in and out the same day. It was melanoma-related surgery number seven and if my luck continues I am hopeful it may be the last.
We have since found out that new cells are growing strong and rapidly. Today, Dr. Yang said that the cells are no longer expressing IL-12, which is interesting scientifically since they are continuing to fight (and kill) the tumors. So where that all leaves us is that the treatment continues to work, I am on my way to NED, and I have a whole slew of back-up cells that will be waiting in a freezer in case I ever need them. Life is good,  so very very good. I don’t have to go back for scans for two months (May 17th). While it’s exciting that they are confident enough in the continued success of the treatment that we can extend our time between scans, it does make me nervous to wait that long. I only have one subcutaneous tumor left that I can feel, which is fabulous, but also means that I am going to be very nervous about things going on that I can’t feel/see. But I believe whole-heartedly in my doctors and if they are confident enough to wait, then so I am.
On the show Breaking Bad (which is a very good drama about a high school chemistry teacher turned meth cooker), the main character, who has stage 4 lung cancer, says that when he found out he had cancer he thought, “why me?” And when he found out his treatment was working and he was getting better, he thought, “why me?” This is significant to me on two levels. First, along this journey I have been extremely lucky to meet some of the strongest, bravest, most determined people I have ever met. I have met people who have been through much greater battles than mine and whose smiles outshine all others in the room. And the fact is treatment success is few and far between. Melanoma is a crazy beast who attacks when and where she wants, oblivious to whom she is hurting, blind to the physical and emotional suffering of her captives. She doesn’t care what you want. She is not worried about your nightmares, the constant pit of dread contained in the belly of your family, or if your child will celebrate his high school graduation with both of his parents.  It seems that the difference between who she defeats and who is able to defeat her is almost entirely random.  And in all of the miraculous excitement surrounding how successful my treatment has been, there is a trickle of awe and an ocean of gratitude that I so far seem to be one of the lucky few. Why me? Why is melanoma moving aside to let me cross the bridge from cancer patient to cancer survivor when so many others are fighting just as hard as I and they can hardly see the other side through all of their pain.
I understand the science. Melanoma is a uniquely personal physical experience. Everyone’s body responds differently to it and to each treatment. The physical “why me” I can accept. So it is the metaphysical “why me” that I have to spend the rest of my life answering. I have a responsibility to all of my fellow warriors to take every mind-blowing lesson I am learning on this journey and use it to lead a better life; to be a better person. It has taken me 14 months of existing within arms’ reach of death to finally understand what it means to live. There is no doubt in my mind that I need to, that I have to, find a way to use all of these experiences to help others. I have an overflowing need to make other people’s lives better – to show others just how beautiful life is and just how important it is to be happy. Now that I am getting better, people keep telling me how great it is that I can get back to normal. I appreciate the sentiment, but the thing is there is no longer a normal and I can never go back. Just like you can never go home again and you can’t step in the same river twice, you cannot look death in the face and then pretend you didn’t see it. You can go forward, but you cannot go back. So my new challenge is to figure out who this survivor is and how she is going to live up to all of the amazing gifts she’s been given. If I could do anything I wanted and I never had to worry about paying the mortgage or Kai’s education or regular daily expenses, I would find children without parents and I would love them. Not babies, babies are in high demand. I would love and care for kids who would otherwise be lost in the system. I would create a home for them that is safe, where they could live without worry and fear, where they could grow, where they could soar. I would take these innocent beings who life was already starting to beat down and I would teach them every lesson that cancer has taught me. I would fill their days with happiness, with love, and with hope.  I would show them how amazing they are and I would try my hardest to install in them a self confidence that allowed them to create brilliant futures for themselves. That is how I would like to help the world. That is my dream. What is yours? Think about it, because the first step in making your dreams come true is knowing what they are. I know what mine is; now I have to figure out how to make it happen. One step at a time – all of life one step at a time.
Today I am thankful for the continued success of the IL-12 treatment; I am thankful for my brilliant doctors who I will sincerely miss seeing over the next two months;  I am thankful for the opportunity to meet  some amazing warriors whose battles I have no doubt will end in victory; I am thankful for MMG and all of my amazing co-workers/friends who I will be seeing again starting April 2nd; I am thankful for the upcoming (May 12th) Melanoma International Foundation’s Safe From the Sun walk and all of the extremely generous people who have donated and who will be joining us at the event  (there is still plenty of time visit - www.safefromthesun.org, Villanova walk, visit a team, team Melanoma Mom - to donate or join the team and participate in the walk); I am thankful for the unceasing love and support of all of our amazing family and friends; I am thankful for the ability to share good news; and with all my heart, I am thankful for my sweet Jeff who is the absolute personification of steadfast support and who has taught me what it means to be a true partner, and our perfect baby Kai. I will give to you every gift that has been given to me, my sweet darling. I will always hold you as tight as you’ll let me, but I will devote my life to teaching you to fly.

11 comments:

  1. Jamie, I am so excited for your continued good news! We think of you guys and pray for your success every day!

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  2. Awesome news, beautifully delivered. Thanks for the update.

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  3. Jamie, I am moved beyond words...at your successful results and your subsequent self-discovery. We all have so much to learn from you. My heart is happy!
    Love you guys.
    Sharron

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  4. Beautifully written as always! I am so happy all is well for you and your family! I saw a sign spray painting to a building while I was out on a shoot in Providence. It read," You are Loved." So simple. To pass this along to a child, or anyone who feels unwanted in this world is extremely powerful. May you continue to pass along your gifts and inspire others!

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  5. How insightful for you to realize that "Why me?" is an equally daunting question whichever way you ask it. "Why should I survive?" might be even tougher. I think you are lucky and blessed, but not exactly chosen. You have seen enough heartbreak to know that many many people who die are beautiful and well-loved. I'm not positive about any of this, but I do believe God listens and prayer helps. I also think that your journey is some kind of miracle. And you remind all of us that life is a gift, best experienced by giving. Let me know when you're ready to learn to knit!

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  6. Jamie-
    I am so happy to hear more good news! This has been such a long journey for you- it's about time you start crossing that bridge to healing sister! No more normal for you- you are an inspiration, role model, miracle to all of us. YOu will make your dreams happen- how could you not? Plus, I'm sure you'll have a little help from your friends and family.
    Love you!
    -Donna

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  7. Great news, Jamie! Keep up the fight!
    Hope to see you at Villanova.

    Gary Leauby - Captain, TEAM MARE

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  8. I hope this doesn't come off too strange, but I have been following your blog for a while. I don't believe I have reached out prior just because I wasn't sure how to. I blog for a company called UV Skinz and the owner, Rhonda Sparks, lost her husband to melanoma. When she read your blog she was very touched. Is it possible for us to send you some UV Skinz uv-protective swim shirts for your young son? If you don't mind emailing me at kalisha@uvskinz.com Thank you and keep up the strong fight!

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  9. I am so glad for you this is working. I too came to dr. Rosenburg at nci for a til. I however was not that lucky and it traveled to my brain and they took me off the study. The nurses are so wonderful there and the hospital is the greatest. My hopes for you is ned!! Best of luck to you. Jolaina from michigan

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  10. Hi, Jamie. We've not met -- I'm a physician & mother of three boys under 6, living up in Canada. I was just diagnosed with stage IIIC melanoma. I'm trying to keep my fear under wraps enough to be with my kids, in the moment, more moments than not! I've just read every word of your blog, and it's given me some comfort & company in a time of great pain. Thanks. -- Ursula

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  11. Hi there,

    I work with Dana and I am just so delighted to continue to hear good news about you. God bless you on your journey to perfect health!

    RJ

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