Tuesday, February 1, 2011

February 1

The circle of support continues to expand.  Today we were surprised by a care package from work.  I’m not talking about your run-of-the-mill, get-well care package.  I’m talking about an overflowing abundance of generosity that took three trips from the car to the house to unload.  It had everything from lotion and chapstick, to homemade cookies and barbeque, to talking picture frames, to shirts for us and a onsie for Kai with custom made “team Goldfarb” decals that included pictures of our family, to Nintendo DSes for each of us, to a Play Station 3 for the house.  And that’s not a full list, that list was just meant to show the range of items included. It was a super gigantic care package on steroids.  Our co-worker/friend, Angela, who delivered it to us told us that there is also a whole meal cooking, errand running, general helping organization effort going on companywide.  And while she was talking, I noticed she was wearing a melanoma support bracelet (we understand the whole office is wearing them in a show of solidarity for us).  There are no words that can express how much this level of support has affected us. We have been embraced and held tight by our work family in a way that goes so far above anything that I would have expected or even thought was possible.  The way that they have rallied around us over the past couple of weeks – so quickly and so completely – is simply awe inspiring. To say we are grateful is a severe understatement.  And it’s not the things, it’s the fact that everyone instantly came together to provide the most possible support, professionally and personally, to both of us (although the things are fabulous and we love them too, don’t get me wrong). I have never felt so claimed and protected by a group of people. It’s like all of these wonderful people have said to us, “you are ours, we will take care of you, you don’t have to worry about anything other than winning this fight.” They were our co-workers, they were our friends, and now they are our family, every single one of them.  We also had a wonderful home-cooked dinner from our good friend Renee today, dinner from our wonderful neighbors last night, a visit from friends Ryanne and Bret yesterday who brought us a recordable book so that I could still “read” to Kai when I’m not here, a hand-delivered bouquet of fruit from another group of co-workers, and a never-ending stream of cards and good wishes.  I just cannot believe how loved I feel. I am in awe of the amount of support we are being given. I am grateful beyond words for everything.  And I am sure that I will be changed by this generosity forever.
Dr. Schuchter, from the University of Pennsylvania, called us today. She received the results of the BRAF testing from Dr. Thambi and she called us to tell us how happy she is about the results. She said that she received them earlier today, but had only just finished in clinic and rushed to call us because she was so excited that I had another treatment option available (the BRAF-specific treatment). I believe that she meant that; I believe that she was excited for me.  Dr. Schuchter is a renowned melanoma expert.  She sees a vast amount of patients. Her help was enlisted by a very good family friend and we have only met with her once. But we already feel that she sincerely cares about us and we are grateful, so grateful, to have options. There aren’t a lot of good options for melanoma, but now we have a plan for three clinical trials – the IL-2, the TIL cell therapy, and the BRAF-specific treatment. I am so thankful for these options and for the truly caring doctors who are walking this journey with me.
This is a strange time. I feel like today and tomorrow are the last two days that I will be the person I am now. I feel like once the treatments begin, I am embarking on a journey from which there is no return. Even after I am cured, the experiences that I will have had will have changed me – they already are. After going through the treatments, I imagine that I will always live with at least a small amount of fear and uncertainty about the future. So as ready as I am to end this journey in victory, I am also nervous to begin. It’s not the treatments or their side effects that scare me; it’s the inevitable fear itself that we will have along the way.  But at the same time, I will also be changed for the better.  Because of this journey I am experiencing humanity in a way I never have before – the raw human emotion and unquestioning support I am being shown has opened my eyes to the innate goodness that exists in all of us. And I will gladly live with a little fear in exchange for the vast amount of love with which I am surrounded.
Today I am thankful for my amazing MMG family; my good friends who continue to overwhelm me with support; my wonderful family who keeps showing me the face of positivity even though I know this must be difficult for them; the doctors who will cure me; the clinical trials that are my only options; and, as always, my fabulous husband and perfect baby Kai. May you grow up with the knowledge that we are all good.  We are all love. We are all one.

17 comments:

  1. Your awareness of the nature of the journey that you are beginning is deep. So many people misinterpret Frost's "The Road not Taken" to say that it is about making choices carefully in life; actually, it is much more about the idea you express: every path we go down eliminates the ones we do not take. Your new path is one you did not exactly choose, but at the same time you have chosen to respond to your situation with courage, openness, and strength. Your sense that life is a fragile and precious gift is one we all need.
    As for the response of your friends, colleagues, strangers on the net, do not be amazed. In this case, you are simply receiving what you have always given. Of course, continue to be thrilled and grateful, but please also realize that some of this generosity is about the sort of person you are. You have always given freely of yourself--do not be surprised that others want to give to you. Prayers, blessings, love

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  2. This may sound crazy given the circumstances, but you are incredibly lucky and blessed! To have such wonderful family and friends. To already know the wonders of clinical trials. To be able to take part in three of those clinical trials. To touch so many people with your story!

    I follow your blog every day and continue to pray for you and your family, continue to be amazed by your strength and continue to be greatful for the new outlook on life you are giving me and so many others. God bless you Jamie!

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  3. You are right--you will be forever changed by this experience. You will be STRONGER!

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  4. Hey I just wanted you to know that I am thinking of you. You and your whole family is great and I am so grateful that you are sharing with us. Thank you for being so open and honest.

    Much Love and Wishes

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  5. "The love you get is equal to the love you give"~Paul McCartney/John Lennon

    What an amazing force field of love you have around you! It makes my heart happy to read about the hundreds of people willing to reach out and show their love. What a great gift!

    You and your family are always in my thoughts.

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  6. Not a day goes by that we don't think of you. We are the ones that are taking our strength from you!
    Ruthie and Ken

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  7. Hi Jamie: We are friends of Bill and your mom. We've been following your blog daily and want you to know that you are in our prayers through out the day. God is watching over and caring for you and your family in many ways. We know you are well cared for. Stay strong and God Bless!! Terry and Carolyn

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  8. Hi Jamie! just wanted you to know I was thinking of you guys! I miss seeing you in the office and can't wait for you to dance with us and have martini's and appetizers at the MMG holiday party I am planning!!! Hugs and Hugs and more Hugs!!!

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  9. Hi Jamie, just wanted you to know that I am thinking of you, Jeff and Kai. Thank you for sharing so much of your journey with us. Sending you lots of hugs and support and you continue your journey.
    Love, Kim

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  10. No blog today? You didn't see your shadow and go back into hiding,did you?

    Noel Hertzog

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  11. Thinking of you...continue to read your blogs, and continue to be so amazed on how strong you are. Hope today is going as good as it can be...we are all pulling for ya! You got this girl, you're one tough cookie :)

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  12. Here in Wisconsin, I am thinking of you...and how I am now happy to shovel all the snow and carry on with life's usual issues. Praying for you!

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  13. Hi Jamie, follow your blog every day, thank you...sincerely. Think of you, Jeff, and Kai every day as well:) Positive thoughts and energy from me to you!

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  14. Hi Jamie,

    Carrying you in my heart, thoughts and prayers. Love You, Love You, Love You!!!!!

    Robin

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  15. Jamie-
    Hope everything is okay, miss your blog posts. They help me feel connected to you and are so inspirational. You, Jeff, and Kai are in my thoughts and prayers. Stay strong, we are all cheering you on.
    Love you!
    -Donna

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  16. Jamie and Jeff~
    Been thinking about you all day. Hoping this day in your journey went well.
    ~Judy

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  17. Happy to hear that your options continue to expand and SUPER happy to hear that this renowned melanoma expert is in your corner with a smiling face. Just continue to heed the reminders that you are not doing this alone and that we would gladly carry you across the finish line than see you within 100 miles of faltering or losing hope.

    Enjoy all the goodies,

    Andy

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