Tuesday, April 5, 2011

April 5

Well, here we are again. But this time with the fabulous knowledge that the treatment is working. Knowing the horribleness is going to start again tomorrow morning is causing me much less anxiety since I know for sure that it’s working.  This time the IL-2 is my friend and I welcome her back with open arms (and liver and pancreas). We arrived at the Clinical Center around noon today and first had blood drawn. We then had a meeting in the clinic with Drs. Schaub and Yang (Dr. Yang is my new attending physician – not new to the surgical team, just new to me). They reiterated what Dr. Schaub told us on the phone yesterday, but even though we already knew the information, it was great to hear it again in person. After the meeting, we went to the in-patient unit (same unit as before), completed paperwork and saw my room. Unfortunately it’s not a private room this time, but the unit is completely full. I know there are people who are immune-compromised and need the privacy much more than I do.  But I’m still hoping something opens up for the worst of the treatment – and not just for my sake, but for my roommate’s sake as well. Either way, I will be fine. We then went to the procedures unit and had my PICC inserted by a hilarious nurse named Mash. The procedure takes about an hour and a half and during that time, Mash told me about his son’s involvement in clinical trials for ulcerative colitis. Ultimately, he had to have his colon removed and his rectum reconstructed (and is doing very well now, a year after the surgery). I am going to remember this when I want to complain about the IL-2 diarrhea, because really, a few days of that is nothing compared to having your colon removed.  After the PICC was inserted, we left for about an hour to eat dinner and then came back to unpack. Now I am in my room, settled for the night, and Jeff is on his way home. They will begin the pre-medications and hydration (through my PICC) around 10:00pm and the first dose of IL-2 will be at 7:00am tomorrow morning. Dr. Schaub said to expect to receive fewer doses overall. We shall see what happens tomorrow. All of my focus is going towards not ending up in the ICU confined to bed again. Mind over matter – no ICU it will be.
Even though it was a bit of a mad rush to get everything ready to be admitted today (when we were not expecting treatment to begin again until the end of this week or the beginning of next), I am so glad we are starting now. The sooner we start, the sooner we will be finished.  And this time we might really be finished; finished for good! What a fabulous thought.  IL-2 only helps 15 percent of the people who receive it. It only cures 5 percent. I am already one of the 15 percent.  I will be one of the 5 percent as well. And I will forever be so extremely thankful for this wonderful journey that has already given me so much love, so much friendship, so much understanding of myself and my life priorities. My priorities in life are my family and friends. Period. There have been moments when I have been terrified that I won’t see Kai grow up, that I will abandon him when he needs me the most. I have been devastated thinking about all the time with Jeff I might miss. I have been overwhelmed with guilt about the pain I might cause my parents. And I have wallowed in self-pity about the good times with friends that I might never have.  But never once have I worried that I may never have a house full of expensive things. Not one time did I grieve for the luxury cars I might not drive or the designer clothes I might never wear.  I haven’t spent any time worrying that my house wouldn’t be clean enough, that the chores wouldn’t all get done at the exact right time, or that I might not get a big enough bonus at work. None of that matters. It just doesn’t matter. The only things that matter are the love I share with my family and friends, the fabulous connections possible between others on similar journeys, and the overwhelming support that explodes from others when you share your journey (whatever that journey is) with them. So from this experience, I make these promises to my sweet baby Kai: I promise that I will never say to you “we’ll get to that tomorrow” unless I’m talking about cleaning your room or doing something similarly un-fun. I promise that I will always remember how important it is to seize the day and make the most of every minute, and that the most important aspect of each day is the amount of sheer joy you experience. I promise I will always have time for you no matter what else needs to be done; to listen to your stories, to help you, or just to play.  I promise you that you will always know just how much I love you and how important you are to me. And most importantly, I promise you that I will do my absolute best to ensure that you grow up experiencing life, appreciating life, and loving life.  I will pass on to you these fabulous gifts of love that others have given me.  And I will love you fully every day of my life.  Because of this journey, I think I will be a better mom than I may have been. And for that, I am thankful.
Like the previous times, I will try to post as often as possible over the next few days. Since the second round was so vastly different than the first, I have no idea what to expect this time. Fingers, toes, and eyes crossed for staying out of the ICU. Otherwise, bring it IL-2, I am ready for you my friend.
Today I am thankful for the comfort and familiarity of the Clinical Center; the treatment I will receive tomorrow, including the pain that will lead to my cure; the continued support of our amazing family and friends; and as always, my absolutely fabulous husband, Jeff (I promise to also love you fully every day of my life) and my precious baby Kai. I miss you with a tangible pain, my perfect little one. Please know that I will be back soon to feed you sweet potatoes.


  1. Jamie-
    I am so happy for you, Jeff, and Kai- you knew it was working- we all hoped but, you knew! I believe that you are beating this cancer through sheer determination and the desire to live and love, especially for Jeff and Kai. Please know that all of our thoughts and prayers are with you as you enter this battle again. We hope for as many doses as your body can withstand and a swift, speedy recovery.
    You'll be back before you know it- back to the normalcy you got to enjoy during your "time off" from treatment. Back to the loving arms of your husband (who must just be over the moon with excitement for you) and to the sweet embrace and cuddles of your adorable little one.
    I can't wait to start having play dates and to collect on Mommy and Kai baked cookies!
    I'm so happy for you, so happy for all of us that you are getting better, because, let's face it- the world is just a better place with you in it. <3
    I love you and will see you when you are home and ready for some company.
    Stay strong sister.

  2. Jamie, you sound so upbeat again. What an amazing young lady. Jeff, Kai, and many others are supporting you. As your support grows, your tumors shrink. Keep that vision in your mind. The prayer is the foundation for all that is becoming reality. God bless you and yours. Hang tough. You CAN do it again!

  3. Jamie, the words of an Indian proverb remind us of the wonder of joy that you are finding: how the power of Light facing all the statistics of the darkness can come to this victorious step on your journey--
    A candle is a protest at midnight,
    It is a non-conformist.
    It says to the darkness,
    'I beg to differ.'
    Melanoma, we beg to differ!

  4. PLEASE READ THIS!!!! type in PLX 4032, follow to UCLA Dr. Rivas, Onocology..I am a stage 4 metastatic melanoma patient. Dr. said I lit up like a xmas tree. After 60 weeks of clinical trial medication, my tumors are almost all gone. I am going on two years since given 6 months to live. They are doing DNA research on me to find why it worked. PLEASE TRY THIS