Monday, January 24, 2011

January 24

I cried at Whole Foods today – right in the middle of the produce section.  Not a full-body sob, just a few uncontrollable tears.  I debated whether or not I should say that since my message is positivity.  But I decided to write it because a) it leads to something else I want to say, and b) it’s important to note that being positive is a conscious choice I’m making, not necessarily a natural inclination. I am choosing to focus my emotions on hope and love and thankfulness and I know I’m going to get through this. But that doesn’t mean that sometimes I won’t be sad  or overwhelmed that it’s happening at all. It’s because of all of the wonderful things I have to live for that I am sometimes sad.  I’m okay with that.  It’s the overall positivity on which I focus. Even in times of weakness, my resolve is still strong.  I was standing in the produce section looking around trying to decide what vegetables to buy and I froze. I just froze. I felt like there was a spotlight on me.  I felt like everyone was staring at me and that everyone knew that I was different from them, that I had cancer. I felt like everyone there was so “normal” and I didn’t belong with them. I went through the motions and did the grocery shopping, but the whole time I felt like I was walking around with a huge letter C on my head and that everyone was pitying me.  Of course there’s no way to tell, I haven’t even started treatment yet, and there’s no way anyone would know, but it feels weird now – all–encompassing – like it should be obvious to everyone.  One of the things that the company I work for, MMG, does is write patient-directed information (brochures, fact sheets, letters, etc.) to help people understand clinical trials and their diseases. When we write this information we very deliberately do not define the readers (i.e. the patients) by their disease.  For example, we would say a “person with diabetes” instead of a “diabetic” or “someone suffering from cancer” rather than a “cancer patient.” I knew that this was important to do, but, to be honest, I never really put much importance on it.  I mean if you have diabetes then you’re a diabetic, or if you have cancer and are undergoing treatment then you are a cancer patient, right?  But today I realized on a personal level that when you label people with a disease, then you define them by that disease.  I am a mother, a wife, a daughter, a sister, a friend, a colleague, a neighbor.  I am a proposal director, a home makeover show junkie, a reader, a carbohydrate fanatic, a wine drinker, a University of Pittsburgh alumni, a library card holder, a firm believer in sunblock. And I have cancer.  I am not a cancer patient. Having cancer doesn’t define who I am. It is just the next step on my life journey.  It is my next lesson.  And it will soon be in my past.  But I’ll still be all of those other things.  I will still be me. And maybe, if I’m lucky and if I learn this lesson well, I’ll be an even better me.
I was on the Melanoma Research Foundation Web site today (www.melanoma.org) and I was reading other people’s stories about their fights against melanoma. One story I read was about a man who also went through the TIL cell trial.  He was first diagnosed with melanoma in 2001 and participated in two trials (a vaccine trial and a trial studying IL-2, which is a cytokine with very harsh side-effects that is also used in the TIL therapy) before joining the TIL trial.  Before he joined, he was given 5 months to live.  That was 5 years ago.  His story was very inspirational. He also said that he lost 35 pounds during the 3-week in-hospital portion of the trial. In a totally demented way that made me really happy.  I mean if I have to have cancer, then I may as well get some help losing the rest of this baby weight, right? Absolutely.
Joining a clinical trial is really the only option for people with stage IV melanoma.  The current treatments that are available to the general public have a success rate of about 15% - only 15% of people who get them respond positively. This isn’t just true for melanoma; it’s true for a lot of cancers, but it’s especially true for melanoma because melanoma is resistant to chemotherapy.  They are still studying how it works and how to stop it. They are finding new breakthroughs each day. Every day, we learn something we didn’t know yesterday. Every day we are closer to finding new options. So any little bit of time you get takes you closer to a new treatment, closer to hope, closer to winning, closer to being a cancer survivor.  Tomorrow we go back to NCI.  I’m anxious to learn more details about the trial and I’m anxious to get started.  I am anxious to kick cancer’s ass.
When we decided to have a baby, I spent a long time deciding on a lullaby for the baby I would soon have.  I wanted something that would motivate him to be true to himself and to not be afraid to experience life. I settled on The River by Garth Brooks. I sang it every day while we were trying to get pregnant, just in case.  I sang it to baby Kai while he was in the womb, and I sing it to him every night while I rock him to sleep. Now the words and the message pertain to me too and I realized tonight while I was singing him to sleep, that if I expected him to live by the song’s message, then I better be sure that I did too.  And after I realized that, I realized how important it is for that to hold true for every single thing I do. So right now, I make a promise to my son, I will live my life the way I want you to live yours.  I will be the kind of person that I want your role model to be.  I will make a conscious effort to show you beauty and love in the world.  I will make sure you smile every day, no matter what fight you are fighting at the time, and I will smile with you every day now.  I will be a better person for you.  I am making a conscious decision to be positive and hopeful and thankful. That is the kind of person I want to be. And if there were ever a time to become the person I would like to be, then that time is now.
Today I am thankful for: being able to go to the grocery store; my mom being back to help with the baby; the continuous stream of love and support being shown to us by our amazing friends; and as always, my insanely wonderful husband and my perfect baby boy.
The River, by Garth Brooks:
You know a dream is like a river
Ever changin' as it flows
And a dreamer's just a vessel
That must follow where it goes
Trying to learn from what's behind you
And never knowing what's in store
Makes each day a constant battle
Just to stay between the shores

And I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try
So I will sail my vessel
'Til the river runs dry

Too many times we stand aside
And let the waters slip away
'Til what we put off 'til tomorrow
It has now become today
So don't you sit upon the shoreline
And say you're satisfied
Choose to chance the rapids
And dare to dance that tide

And I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try
So I will sail my vessel
'Til the river runs dry

There's bound to be rough waters
And I know I'll take some falls
With the good Lord as my captain
I can make it through them all

And I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try
So I will sail my vessel
'Til the river runs dry

7 comments:

  1. Not sure I should post, because you just hit upon what I was going to say yesterday. Just like courage, positivity has to be in the face of something. The guy who knows no fear is not brave--it is the guy who is afraid but goes ahead anyway. Of course you will have sadness and fear. Those emotions are inevitable. But you are embracing every moment and moving through the sad and scary feelings to joy, peace, optimism. Even more impressively, you are sharing your life with all of us. Do not be afraid to say that doubt and worry assail you! Your positive outlook just becomes more real. Blessings, Jamie--we are all pulling for you and praying for you.

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  2. As you have encouraged, I shared your link with my facebook network. I know you'll hear from Nikki Fink, and another friend shared this link: gerson.org.

    Thanks for your inspiring blog, Jamie. You're a shining light!

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  3. you are an amazing light in this world. I am so proud of you as a daughter, as a friend, and as a beautiful, courageous, loving, light-filled human. You WILL beat this and I will be with you every step of the way, as will so many others. Thank you for sharing your heart words. They are a gift to all of us who follow you.

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  4. Tricia Collins HigginsJanuary 25, 2011 at 5:01 PM

    Jamie, I've been reading your entries every day and am so inspired. I'm thinking of you especially this week as your treatments begin. As powerful as your own positive thinking is, imagine that power multiplied by the hundreds of people (family, friends, and even complete strangers) who are following your story and wishing you strength and healing. You are surrounded by love and support. Thank you for sharing your journey with all of us.

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  5. Jamie this is a wonderful post, I hope you continue to update this blog. It is raw, it is real, and I appreciate you sharing. I think about you several times throughout the day. Cancer is scary - but you are right, it does NOT define you. My cousin was "someone who suffered from cancer", colon cancer, at age 26, just two years ago. It was a very scary time, but she is doing fabulous now! I have faith we will same the same about you in two years.

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  6. Oh Jamie, how I wish it weren't true. I do not doubt in the power of positive thinking as it bears on a person's health. You're certainly headed in the right direction with that. I'll keep you in my prayers.

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  7. Jamie - A Melanoma "friend" sent me your blog. This week is 22 months of my husband's metastatic melanoma in brain, liver, lungs, adrenals, hip...March 28, 2009. He was given 2 week - 2 months "GET YOU PAPERS TOGETHER" I have been keeping a blog at Carepages.com boblawrencesjourney. He has been on IL-2, NIH TIL (cells failed to grow) Iplimumab, tested for BRAF (he is postive) and on and on and on. This is a journey and as far as I can tell you are on top of this. I will continue to keep abreast of your journey and please feel free to email me LJBlack612@aol.com if you need to bounce ideas off. It has helped to reach out to other melanoma patients because this kind of cancer is different than others. It is "tricky" and hard to manage. But with the right attitude and clearly the right resources you will be ok.
    Best, Laurie Black from San DIego

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