Wednesday, February 16, 2011

February 16

Baby Kai took his 4-month shots like a champ.  He screamed for a minute and then went to sleep.  He’s been a little fussy all day, but has been trying to smile as much as possible. Today I learn from him. Yesterday was my day of fussiness, but then I put myself to sleep and today I smile again. So here’s what I learned yesterday through the sadness of thinking about Kai not knowing how much I love him: I learned that I should make absolutely certain that the people I love, the people who mean so much to me, the friends I cherish, all know just how very much I care about them. I think it’s easy to think that other people know what you’re feeling, or to feel foolish expressing affection. But the thing is, people don’t always know, or they may know you care but not always just how much. I realize that I have let friendships that are extremely important to me, friendships that have helped define who I am today, slip by the wayside of everyday life. Now, I am being shown an overwhelming amount of love and support from some of these same friends and I realize that I need to be better about supporting people I love every day. I have always just assumed that past bonds would be enough for people to know that I still care, without the need to reaffirm or take time out of a busy day just to drop a line letting people know I’m thinking of them. I realize that I have taken many relationships for granted.  And while I have learned, through this amazing journey, that love does persevere over years and miles, it is so important to make sure people know how much you love, care about, and appreciate them. So I vow to make sure that people who I love, people who I appreciate, people who I care about and support know how truly grateful I am that they are in my life. Because things left unsaid can be the greatest regret of all.

I’ve gotten off track with the clinical trial information since I’ve been home, so I thought I would try to explain the IL-2 trial tonight. IL-2 (or intereukin-2, aka aldesleukin) is a substance naturally produced in the body during an immune response. When foreign substances (illness, tumor) gain access to the body, they are recognized as foreign by antigen receptors that are expressed on the surface of lymphocytes. Antigen binding to T cell receptors stimulate the secretion of IL-2, which then stimulates the growth, differentiation, and survival of T cells that recognize these foreign substances. So basically, IL-2 causes boosts to your immune system by helping your T cells recognize disease as a foreign substance. Because melanoma can be recognized by the body as a foreign substance, and your immune system can fight it as such, giving high doses of IL-2 as an added immune-boost can help your body recognize and fight melanoma tumors. IL-2 is an FDA-approved treatment for melanoma.  It is not an experimental treatment. It only works to shrink tumors in melanoma 15 percent of the time, so it’s not a great option, but it’s one of the few there are and deserves a try.  The clinical trial aspect of this treatment is that researchers aren’t sure how IL-2 works to shrink tumors. So, I am allowing NCI researchers to take my blood and study it, use it in experiments, and in exchange, they are treating me with IL-2. This was not the trial I first talked about. The bigger trial is the TIL cell treatment. The TIL cell treatment is not FDA-approved; it is experimental treatment. They harvested cells from my liver during the in-hospital biopsy 2 weeks ago, and they are in the process of trying to replicate these cells into a new immune army for me. But in the meantime, instead of sitting around waiting to see if the cells will grow, we are trying the IL-2. Best case scenario would be that the IL-2 works and my new cells grow.  Then they would freeze my new cells and save them in case the cancer progresses years from now. So right now, I am involved in a clinical trial for the IL-2, but it is not an experimental treatment.  I could get this treatment outside of NCI, but getting it from NCI allows researchers to study me to learn about how the treatment works, which will hopefully lead to better treatment in the future for other people with melanoma. Clinical trials are extremely important.  They are the only way researchers learn about disease and new treatments to combat disease. If it weren’t for clinical trials, we would have no new medications or treatments.  Industry statistics show that the vast majority of people with cancer are never even told that they have the option to take part in research and thereby gain access to new and potentially life-saving treatments. While NCI is the most well-known treatment center, there are numerous clinical trials sponsored by pharmaceutical companies that offer options and hope just the same. But you can’t join one if you don’t know it exists. So my request is this, if you know someone who suffers from cancer (or another disease), please tell them about clinical trials, please tell them about NCI, please tell them about hope.

Today I am thankful for the health of baby Kai who now weighs 14.17lbs and is 25 inches long; all of the wonderful, amazing people I am lucky enough to call my friends; the continued love and support of my loving family; and, as always, my incredible sweet Jeff and my perfect baby Kai. Thank you for teaching me a lesson today, sweet baby. I too will remember to smile as much as possible through the fussiness.


  1. I'm glad to see you are more upbeat today. I'm glad for your explanation of your treatment. I'm glad you realize your blessings and note them. I'm glad that you are going to win battle two starting on President's Day. I'm glad you have the opportunity to have this wonderful treatment. I'm glad I know you. God bless you and yours. NKH

  2. Jamie, thank you for the reflection on friendship. It is a reminder that we do not travel parallel to our friendships but entwined with them. It is so easy to become immersed in our own busy-ness...
    We continue to hold you in prayer with love,
    Nancy D

  3. I am proof that a parent can learn from her/his child. You have taught me much about courage and love and independence. With your loving, open heart you are learning much through this experience, through the unconditional love of Jeff, through the love of your family and your friends, and even through your precious little Kai. Life is about just those very things. Love is more powerful than any other force on earth. Believe it. Rest in it. I admire your gratefulness, your spirit, your open heart and your spunk! Know you are loved. So very much!

  4. I want to thank you for sharing the tough stuff as well as the upbeat days--what makes your blog (and your fight) so amazing is your honesty. I go back to the thought that courage isn't the absence of fear, courage is going forward in the face of fear. You are tough enough to fight the fight and to share your journey with us. As you go back to NIH for round 2, know that many people are in your corner, cheering aloud or in their hearts.

  5. I'd like to think that Wilson taught you to write so eloquently but I have two graduates who prove otherwise. Guess it's the Innes/Troil/Goldfarb genes coming through. Wonder if Kai will inherit it. I saw your mom yesterday at movie night at Alright with Central Park friends. So the next hug she gives you also comes from Karen, Angie, Lynne, Mary, Janet, Helen and me.

  6. You have enlarged your family by hundreds. We who know you, and even those who don't are indebted to you during this time for the inspiration you have given. I don't know anyone who has read your words and not been changed for the better in the process. We are here for you day-to-day and for the long haul. We think of you each and every day, and send our love and prayers your way...