Monday, June 6, 2011

June 6

Dr. Schaub called today with the results of the lab tests. The tumor on my neck is melanoma.  They had their weekly meeting this morning (where all the doctors in the branch meet to discuss each case) and decided they would like to remove the tumor instead of moving on to a new treatment. If we do a cell-based treatment, like the TIL treatment, they will have to wipe out my current immune system to make way for the new cells. If they wipe out my current immune system, then the progress of the IL-2 on my other tumors will be stopped. They feel that the success of the IL-2 in shrinking the tumors in my liver and pancreas is too important to stop now. Also, if they remove the tumor in my neck, they believe it will contain better cells from which to grow new cells for a cell-based treatment. They still have the cells they grew from my liver cells, but because they got those cells from needle biopsies rather than from the full tumor, they aren’t positive about the quality of the new cells. Plus, since they harvested and grew the liver cells, some of the criteria to have the cell-based treatments have changed to require that a higher number of original cells be obtained from a tumor. So, for these two reasons (don’t want to stop the progress of the IL-2, and believe the tumor will provide better cells to replicate for TIL or something like it), they will remove the tumor. Then we will continue to have monthly scans to determine the ongoing progress of the IL-2. It could be that nothing new ever grows. Or it could be that the tumor on my neck is an indication the IL-2 may stop working. Either way, we will wait to see what happens before moving on to another treatment. If the scans show new tumors, or that the current tumors stop shrinking, then we’ll try something else. I am happy with this decision. Going through the IL-2 was very difficult and it’s having a good result so far. I am happy giving it more time to see how far it can go. I still believe it can be my cure. And I am extremely thankful for the effect it is having on my liver and pancreas. They aren’t sure when the tumor on my neck started growing. They didn’t see it in any previous scans, although they were not really looking for it. They only knew about it because I felt it (from the outside- I would guess it’s about the size of a marble, although this always seem to feel bigger than they are). It could just be a crazy thing that grew, they’ll remove it, and the other tumors will continue to shrink until I am cured. I’m sure that’s what will happen. 

It’s difficult to live normally between scans. It’s like my life (our lives) is now going to be measured month-to-month. My next scan will be at the very end of June and now that I know there is a new tumor, I feel like I’m again trapped in the void of wait-and-see. I have to keep moving forward, keep making plans. But any plans past June are plans in which I am not fully vested emotionally.  How can I be, when the plans could easily change from whatever fun or normal activity it is, to deciding on and undergoing another treatment? I feel stuck. I am tired. I am so very very emotionally tired. I cannot wait for the day when I wake up and my first thought is about something like what I might wear that day or what Kai is going to have for lunch, rather than opening my eyes to remember that the bad dream is reality. I am sure it will get easier with time. I have no doubt that as we get more and more good news after scans over the next few months, the cancer will start to fade to the background and my “real” life will take over. I am thankful for that day.
Today I am thankful for the wonderful progress that the IL-2 is making; the quick decisions of my doctors and my utmost confidence that they have only my best interests in mind when making decisions; an awesome spur-of-the-moment visit from Judy; my mom who thankfully is still staying with us; all of our amazing friends and family; my wonderful husband, Jeff-I am so sorry for this setback but please know that it will not deter my victory-and our perfect baby Kai. I love you, baby Kai. While I can’t always predict what might happen next, I can always promise you my love.


  1. Each day that goes by there is more research advancement. The longer your treatments keep your condition at bay, the better your chances are of being cured, if you are not on to the way toward a cure already. 2 new drugs are available now in addition to the 2 you have in your quiver, showing promise for survival. So hang in there ... we are pulling for you.

  2. First link did not post so here is a synopsis: The drug, vemurafenib, targets a gene mutation found in about half of all melanomas. The drug is being developed by Genentech, part of Swiss-based Roche, and Plexxikon Inc., part of the Daiichi Sankyo Group of Japan.

    The second study tested Bristol-Myers Squibb Co.'s Yervoy, a just-approved medicine for newly diagnosed melanoma patients, and found it nearly doubled the number who survived at least three years.

    "Melanoma has just seen a renaissance of new agents," and more are being tested, said Dr. Allen Lichter, chief executive of the American Society of Clinical Oncology.

  3. Continue to remember that this is truly only a setback, not defeat - not even close! You have fought too hard, you are too strong and you will kick cancer in the butt!

    Sending so much love and support your way. Continue staying strong and fighting hard!


  4. Jamie-
    You’ve got this sister- don't let it get you down. I know that this has been a tough road to take. But, this is just a speed bump. You’ve been through so much worse. SO much worse. You have so many people supporting you in this battle. We won’t let you down. Let us do the worrying, okay? You just enjoy that baby and time with your family. Focus on the future. Kai will be walking before you know it, talking too. Wait until you can hold a conversation with him. It will blow you away. And, I’m sure he’s got a lot to tell you. Most of all- thanks Mommy, thanks for never giving up. I need you and love you.
    Love you sister,
    Please hang in there,

  5. Max,

    A friend told me what’s going on with you and about your blog. I debated whether to reach out to you, worrying about whether you’d want me to or not. And perhaps even more so that you would be indifferent. But you’re right that life is too brief and uncertain to let some things go unsaid, no matter what. So I just wanted you to know that I’m thinking about you and that I’m so proud of you. (Of course, knowing you as well as I do, your courage doesn’t come as any surprise. Neither does your amazing tolerance for pain.) I’m happy for you for your marriage, and your wonderful baby, and for all the love that you’re getting now that you so richly deserve. And for all the prior knowledge you had about clinical trials and for being so near NIH. Maybe things turned out the way they did so you could have all of these things together when you needed them the most. I really feel like you’ve finally found your voice as a writer too. I’m sorry it had to be under these circumstances, but your blog is such a perfect blend of your spirituality and your history and philosophy of science background. You know I’m not a religious person, but I’m praying for you and I’m going to keep praying for you. It’s unfathomable to me that you won’t beat this thing. I always knew you’d make a great mother and I want you to have a long and happy life to be just that.

    Not fire, not ice.


  6. Hey Jamie,
    Thank you so much for a wonderful day Sunday. It was absolutely perfect. Chatting over lunch, walking into town for the festival, and playing with Kai and all of his toys! Where IS that turtle?

    When you say, "Our perfect baby Kai..." well, you got that right! He is quite the little charmer. He certainly had the three of us smiling and laughing all afternoon! Oh yeah, how in the world did he get all of us busting a yoga move? I swear I heard him snicker and mutter "amateurs" since our core form was no where near as good as his!

    Lastly, I can't reveal our entire conversation, but when Kai and I were whispering back and forth while standing out on the porch before I left, he assured me that when you have sad or scary days, he won't let you stay there very long. Just wait till you see all the ways he has in store for making you smile and laugh at just the right moment! You haven't seen nothin' yet!

    Hang in there Jamie.
    As always, lots of hugs and love ~Judy

  7. Ah Jamie Jamie Jamie... as everyone else has said, this is just a minor set back, another thing to just keep you on your game. Surgery is scary, but probably the best chance of taking the whole stupid marble sized tumor out. I know how you feel about the time between scans. My mom had bladder cancer several years ago, had two surgeries and immunotherapy to make sure they got it all and every time she goes for a recheck I feel like I'm holding my breath all day...even though every scan has been good. But in between, life does go on and so will it for you. Kai certainly isn't going to stop growing up, so enjoy every second of it! Although nothing compared to what you are going through, I'm struggling through my third trimester of pregnancy with all this heat, a crazy work schedule and a soon to be 4-year old. One night the stress (and the hormones!) got to me and I just cried and my son held my hand and told me "I'll always hold your hand when you cry." So even though Kai can't express it in words yet, know that he's got your back - he too can always promise you his love.
    Lots of love, hope and prayers!

  8. Jamie,
    As much as I hate to admit it, having seen friends pass, more and more at my age, I think we all go day to day at His will. However, we don't all have the wisdom you have gained by facing your large nemesis. You, young lady, will make the best of this battle and will win. I have noticed the heart you live with in your writings. You can do this month to month in a breeze. Your days of leisurely thoughts will come in His time. It's always tough when it is not on your terms, but He is a gracious God. Your acceptance of His love for you will just make things better on His schedule. It's always on His schedule. God bless you young lady. You are a winner!!!!!

  9. Nobody needs to tell you to hang in--like you aren't doing that all the time! Guess all I really want to say is that we are all out here in cyberspace sending love and light your way, and that all of us are explaining to God why the world needs to have you with us for a good long time. I suppose God knows the reasons, but I think it's a good thing to remind Him. I can surely understand your longing for "normalcy"--whatever that might be. However normal or abnormal you feel, I know you will keep the gift of seeing your blessings every, every minute. And you are a blessing to all of us, and most especially to Jeff and baby Kai (the Perfect One)!

  10. Good morning Jamie,
    God speed everyday, but especially today.
    Sending light, love and as always many hugs