Friday, September 9, 2011

September 9

Once more into the breach, dear friends, once more. Here we are, at the Clinical Center again, just a few hours to go until treatment begins. I arrived yesterday.  I had to stay overnight last night to be hydrated. Now we are all clear and the pharmacy will soon be notified to mix the chemotherapy. In just a few hours I will willingly, purposefully, and hopefully inject poison directly into my blood stream with the sole purpose of killing part of myself. My chemo regimen comprises two drugs, cyclophosphamide and fludarabine. Cyclophosphamide is given today and tomorrow. Fludarabine will be given for 5 days starting today. The doctors and nurses tell us that the cyclophosphamide is extremely toxic and can be difficult to handle (which is magnified by the enormous doses they will give me to make me neutrapenic so quickly), but that the fludarabine is much easier on the system. My understanding is that the cyclophosphamide kills my blood cells and fludarabine kills my bone marrow. I have a one-day break between the last dose of fludarabine and receiving my new, improved cells, and then 10 to 20 days until my cell counts return to an acceptable level. It feels like we are about to embark on an epic journey.  I have no idea what to expect other than I won’t feel well and then I’ll be cured. I am scared of the pain. I am hopeful that this will be my cure. I am thankful for this incredible treatment. And regardless of which emotion rules at any given time, I cannot go back, so therefore I go ever forward toward my cure. Smiles and tears mix together to create a serum of hope.  And the knowledge that I am about to receive such an amazing treatment at such an amazing place soothes my worries and quells the worst of my fears.
Because if its toxicity, I have to stay in the Clinical Center while receiving the cyclophosphamide and for 24 hours after the last dose.  I also have to pee every 2 hours around the clock while I’m here because it is possible for “waste” chemo to accumulate in my bladder and cause it to shut down forever (possible, but extremely unlikely). Doesn’t sound like fun – being sick and having to get up every 2 hours, but I have a baby and I am used to sleep deprivation so I’m sure I’ll get through it just fine (and either way, I have no choice so I will sleep soundly after I am victorious).  So, whatever, it’s only 3 days and I have endured more than that through the IL-2 treatment. Because the fludarabine is well-tolerated, I will most likely be able to go home to stay during the remaining 3 days before I get my new cells, which is fabulous because I’ll be with Kai. I’ll have to come back every day to receive the fludarabine and be monitored, but I can sleep at home with my husband and my baby. I have no idea how long I’ll be here after I receive the cells, but hopefully I’ll be able to go back and forth from here and home at some point during recovery. Dr. Miller said I will lose my hair around the same time I receive my new cells and she will shave my head then. I’m okay with losing my hair. It’s become thin and gross anyway, so now I get a re-do and hopefully it will come back better than ever. My mother-in-law and her friend made me a cache of beautiful head scarves, and a good friend from work lent me some from her recent victory over breast cancer. I also bought a wig for special occasions, which is straight (rather than my normally curly hair) and I’m somewhat excited to have “hair” I can brush (my curly-haired sisters know what I mean by that I am sure). So that’s what I know and that’s all that I know. I feel like I’m about to jump off of a cliff into a void that is swarming with possibilities. I will try my best to let the pain whoosh past quickly as I fall directly into the rest of my long, glorious life.
The doctors just came to see me and tell me that we will soon get started. Dr. Rosenberg said, “We have terrific cells for you.” And they all admired the 13 pictures of baby Kai that are hung across my wall where I can see them from my bed.  I know they are doing everything they can to cure me. I know they have a personal stake in my cure. I know that I am in the best possible hands.  So I embrace the pain with one look at Kai’s smiling face, and I look forward to being made of superhero cells.
We recently had the privilege of meeting a fellow Melanoma Warrior (in fact that is what the T-shirt he was wearing said) and his fabulous family a couple of weeks ago. He, Jake, was coming to NCI to screen for a study and has since been accept into the TIL study, which he will probably be starting just as I am finishing (you can read his story at Jake and his family (his wife, son, and daughter) came to our house for dinner while they were here and we had a great time getting to know them and their journey. Like me, I have no doubt that Jake will be cured and that this is just a mind-opening bump in the road for him too. While we were eating, Jake asked me if I speak with many others with melanoma, and I told him that I don’t really, especially in the beginning, but that I’m starting to do more now. Later that night, I was thinking about my response and why it was true and I realized something extremely important. At that moment I realized that somewhere along the road, I have stopped feeling sorry for my cancer brothers and sisters. I have stopped pitying them (us) and feeling sad when I see them. Instead I have an incredible respect for their bravery, their strength, and their will. I will never again feel sorry for fighters of cancer. They, and their loved ones, are the strongest people I know. They have looked their own mortality in the face and have told it to go F itself.  They have endured more emotional and physical pain than most people can imagine. They have been poisoned, and mutilated, and burned by choice. They fight, and scream, and claw their way to the light. And they come out grateful and full of life. I am honored to count myself among their ranks and they would be my first pick for any team.
I will try my very best to blog each day of this treatment. I have no real idea of what to expect, so I’ll write it as it comes. I will use all of the love we are given as my shield and I will spear my tumors one by one until they are gone forever. No matter what happens during this treatment, I can take it and I will come out better for it. And for that I am thankful.
Today I am thankful for the treatment I am about to begin, which will be my cure; I am thankful for my loving nurses and expert doctors; I am thankful for my fabulous in-laws who are taking care of Kai while we are at the hospital; I am thankful for our amazing MMG family who has begun again their incredible circle of support; I am thankful for our extraordinary friends and family who reach out to us daily to offer love and hope; and I am thankful most of all for my wonderful Jeff who sits by me and feels my (and his own) pain every second, and for our perfect baby Kai. I miss you with a pain that brings tears to my eyes. I love you more than I could have ever imagined. I promise I will win for you, my baby, my love, my soul, my life.


  1. Jamie, Your strength and commitment come through so strongly. You WILL get through this. This journey is an incredible roller coaster and you are riding it with your hands held high in victory. " Can't beat me, roller coaster!" So cry, shout, scream, and fight your way to the light while holding those arms high. Your journey is extreme and you are handling it extremely well! I'm so proud of you! My love is with you just as it was the first time you rode the roller coaster at Hershey Park yelling, "Let me off!" and, then as soon as it stopped, your eyes shining with excitement, you said, "Let's do it again!" You are a survivor and a person who can triumph over obstacles. You are a winner, this I know. Sleep well, my beautiful daughter, even if it's only 2 hours at a time! :) xoxo, Mom

  2. Jamie, You were born tough. It's always been a big part of you along with your joyous hunger for life.

    Your Mom sent a bunch of pictures from the shore, and they are a joy to behold. You, Jeff and Kai are a beautiful family, and Kai just bubbles over with curiosity and happiness. What a testament to you and Jeff, your parents, extended families and friends that he looks so absolutely happy and secure.

    And how fabulous beyond words that he'll be waiting for you at home. We're all with you on this journey. Good luck and God bless.

    Love, Aunt Jan

  3. Jamie,

    You're my hero, and an inspiration! Looking forward to seeing you at some point during my visit to NCI for my prep next week!

    Give our best to Jeff and Kai, and we hope to see them soon too!

    With love and hugs,


  4. You are awesome! You will do it.

  5. Jamie,
    A don't know each other but I have been following you, Jake, William, and Alli via your blogs. I include you and your family in my daily prayers. Be successful.

  6. I've never seen someone so brave and positive like you. You will win!!!! We are with you in your fight!

  7. Jamie,
    I am "meeting" you through Jake....and I am just as in awe of you as I am of him! You are BOTH warriors....and you will both be victorious!!!

    All my best....wishes and hugs and prayers!


  8. You just amaze me. You are so strong and so determined. You will win this battle. Keep the faith and enjoy the support that comes to you in so many different ways. Keep Jeff and Kai in your focus. Keep yourself in the positive mode. God bless you and yours.


  9. Jamie - stay strong and keep up the blog. I'm in the TIL clinical trial at MD Anderson, in the hospital now for my second dose of IL2 and feeling fine. I met with the docs today who told me creative writing is linked to successfully kicking cancer's ass. Yours is not a blog, but a second front. Keep up the fight, sister TIL-ee.

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