Wednesday, January 26, 2011

January 26

Well, there's been a change in plans. After we got here and were admitted, the surgeons told us that they reviewed the CT scan further and decided that attempting to remove the tumor surgically was too risky.  It is between two major blood vessels and there is a chance that they would have to remove half of my liver to remove the tumor sucessfully. They determined that the risk was not worth the potential benefit. Instead they will remove some of the tumor through needle biopsies (performed by a radiologist, using CT as a guide - I'm guesing it's similar to the biopsy I had previously).  They will then try to grow the new cells from what they collect.  Because they won't be removing as much of the tumor as they would through surgery, there is a lesser chance that the new cells will grow.  While we are waiting for the new cells to grow, they are going to give me one course of IL-2.  Basically IL-2 hyperactivates your immune system, which will hopefully stimulate an immune response to the melanoma.  It's an in-patient therapy and I will be here for a week, then home for a week, then back for another week. IL-2 by itself has about a 15% response rate and a 5% cure rate.  There is a chance that my body will respond to it and the tumors will shrink or disapear without us needing to do anything else.  In the meantime, they will try to grow the new cells from the biopsied tumor. If I respond to the IL-2, then  we won't do the TIL therapy. If I don't respond to the IL-2, and the new cells grow sucessfully, then we will do the TIL therapy as planned.  If I don't respond to the IL-2 and they can't grow the new cells, then we are back to the drawing board.  I will be here until Friday for the biopsy, so my immediate time away from Kai has been shortened to really only one full day (since I saw him this morning and will see him again on Friday). I have to come back on Wednesday for the first round with IL-2.

When they first told me about the change in plans I was really upset. All I heard them saying was that we weren't going to be able to do the procedure that would give us the best chance for growing the new cells. I wasn't worried about the risks of the liver surgery, because I was focused on fighting the cancer at all costs. While Dr. Phan was tellling us about the change in treatment, I had a moment where I lost all hope.  Everything had been going so smoothly for the past week (I can't believe it's only been one week) and this change threw everything off course. But now I realize that it's actually a really good change for a number of reasons. First of all, I won't have the 6 weeks where I can't lift Kai - fabulous. Secondly, I'll be in much less pain (actually no pain) after the procedure compared to what I would have experienced with the full surgery.  And thirdly, instead of just sitting around at home waiting while they try to grow the cells, we will be trying something else in the meantime; something with a 5% cure rate.  The IL-2 treatment won't be easy.  The goal is to make me as sick as possible to cause my immune system to go into overdrive. But I won't lose my hair since it's not a chemotherapy, so that's good news (I will lose it if we end up doing the TIL treatment, because the TIL treatment involves chemotherpay to kill my immune system before transfering the new cells, but it will be worth it of course). So the new plan is that I will be here until Friday.  Then I will come back on Wednesday and be here for just over a week.  Then I will go home for 7-10 days, and then come back for another week. After the second round, I will have more scans to determin if I am responding to the IL-2 (a response would be if my tumors shrink). If so, I'll repeate the IL-2 treatment again and then have more scans to see if the tumors have decreased even further. I'm excited for the change in plans. I am happy to be doing something during the period where we are waiting to see if the cells will grow.  I am anxious to fight dirty and I want to do as much as possible as quickly as possible.

I am extremely impressed with the speed and apparent smoothness with which the doctors were able to change course. When I was admitted at 1:00, we were still on track for the full liver surgery. When they came to talk to me about the change it was around 3:00.  By just after 4:30, Dr. Schaub had scheduled the biopsy for tomorrow and we had a plan for me to come back to start IL-2 on Wednesday. I don't think this would have been able to happen at a private hospital. Because of the fanastic resources at NCI, they were quickly able to help me change course and stay on track with treatment; ensuring I was still acting as quickly and as aggressively as possible. I am very thankful for that. While I would consider myself relatively easy-going, I'm not sure how naturally flexibility comes to me.  I think I'm going to have to learn to be a lot more flexible during the course of this journey.  I am thankful for that lesson.

The Clinical Center is different from a private hospital in other ways as well. For example, I am not confined to my unit.  I am free to walk around the building as I please. As a patient, I really appreciate this freedom. I can sit downstairs in the lobby amongst people, or walk the halls, or go to the cafateria if I'd like. Otherwise, I would be trapped in bed feeling sorry for myself. This freedom makes me feel more like a person who is being treated than like a patient. I don't know if it's because I'm part of research or if it's because the Clinical Center, being a government entity, is not tied by some of the same legal fears and restrictions as is a private hospital. Whatever the reason, I am thankful for it as both a patient and a person.

I haven't had any major insights today. It's been exhausting emotionally with the change in course. I will say that being on the oncology in-patient unit makes me very happy for how heathly I am. There are some very sick people here. People who are here because it's their last chance for hope. I am thankful I am not one of those people. If this treatment doesn't work for me I am confident that something else will.  I have a fabulous team of doctors in NCI and outside NCI who are working very hard to help me. Dr. Schaub and I are the same age. He is 8 days older than I am. We live in the same area and we both work in clinical trials. In another life we could have been friends. I feel like he cares about us as people. I feel like he understands how anxious we are about both the baby and going at this as aggressively as possible. I feel like everyone here cares about us as people. My nurse has a 16-week old baby girl. She is around my age and lives in DC. We too could have been friends. At this point I feel like I have more in common with my caregivers than I do with the other patients. And with the speed with which we are attacking this disease, I am very hopeful that I will always feel that way.

Each time I read the heart-felt, thoughtful words written by someone who has taken the time to read my post or who is reaching out to me another way, I feel an extra boost of confidence and an assurance that everything will turn out perfectly in the end. I continue to be overwhelmed by the level of support and the vast amount of love we are being given. This experience is teaching me to never take a friendship for granted. When you are at a point in life where you are forced to focus on only the most important aspects, they turn out to be family and friends, period. I am literally fighting for my life. Knowing that so many wonderful people have my back gives me the strength not only to continue, but to do so with hope, with laughter, and with love. I am very thankful for that.

Today I am thankful for the very thoughtful and generous care package from the Trembles, Christians, and Reids; our neighbors shoveling our driveway this morning; my doctors continuing to keep my best interests at heart and changing course when needed instead of giving up on me; the continued support of our amazing family and friends; my mom for taking care of Kai while we are at the hospital; and, as always, my husband - the most wonderful man in the whole world - and our precious baby Kai. I miss you both terribly. But tomorrow I will be one step closer to victory.

22 comments:

  1. I admire you in so many ways. You have touched so many people. All of your family, friends and medical staff will be in my daily prayers. Keep fighting the good fight. I think you are walking like a woman of class and integrity, you are a strong and very loved lady!

    Your Indy Fan,
    Erin E. Adcock

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  3. Hey Jamie,
    Oh my goodness, you have had a very long day. My prayers right now are simply for you to have a restful night. Sleep well. ~Judy

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  4. It seems to me that you *did* have a major insight today. You questioned your flexibility, but found you have a lot of it. You took a tough hit initially with the change in plans, but came back swinging hard and quickly seeing all the benefits of the new approach.

    Another example of your fantastic strength and positivity! I'm thinking of you every moment.

    All my love, Aunt Jan

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  5. Just wanted to drop you another note to let you know that I'm thinking about you everyday! Keep the positivity flowing! You are inspiring so many people! Keep fighting hard!
    All my love and prayers to your and your family!!!
    Dennis!

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  6. Jamie-
    Glad to hear that the change in plans puts you home with Kai sooner. There's nothing better than baby cuddles. Stay strong and keep doing what you're doing- it's working! You are an amazing, amazing woman and we are all here to cheer you on.
    Love you,
    -Donna

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  7. Today is Thursday and I'm thinking of you. Hope all goes well today.
    Love
    Sharron

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  8. Dear Jamie,
    We know that we have not known you for very long but we are glad that our paths crossed. You are a true inspiration to many people and such a wonderful person. Every night we pray for you and your family…. Hoping that the IL-2 treatment works. The doctors have to find the best cure for you and in doing so they might have to review their decisions but remember that their ultimate goal is to get you well. Do not be discouraged! You have so much to live for – your son, husband, family and friends. Every time you wake up in the morning, look in the mirror and tell yourself, “I am not alone, I will not give up hope, I can and I will fight this disease.”
    Let the courage give you the strength.
    Let the love embrace you and comfort you.
    Let the positive words banish all your fears.
    God bless you and your family,
    Sheree & Roger

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  9. JAMIE BOO!
    I heard a great story, which sounds similar to this day's post. It's about outrunning an alligator - which is sure to eat you. You NEVER run in a straight line to your destination - although it seems to make most sense, you will lose in speed and will get eaten.

    To beat an alligator, you zig zag. It's initially contradictory, but, the alligator can't turn fast enough to catch you on a zigzag. Whta looks like a waste of time is the the fastest, smartest way!

    All my friends are rallying for you. Here's what came in today from my boss: http://www.cleaningforareason.org/. Call them, have your hubbie call them. Give someone the gift of giving you this gift so that you can focus on your health and your baby.

    What's going to work? Teamwork. When Kai's ready, he'll learn all about the wonderpets. It's a great show.

    I love you!
    Amber

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  10. Today is Thursday and I just wanted to write again to say keep fighting the good fight! Continue your strength and healing thoughts. Your mind is a powerful tool in this journey!

    "Nothing is difficult to those who have the will"~Dutch Poet Society

    My thoughts and prayers are with you and your family. All my love.♥

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  11. Hi Jamie,
    We have never met, but my dad and Bill are very good friends and go a long way back. Your mom shared your story with my dad who shared it with me and I just wanted to let you know that you, Jeff, Kai, your family, and all your doctors are in my prayers daily. I work in clinical research and I am so glad you already know the ins and outs of clinical trials. You have a tremendous outlook on this whole situation and process and I wanted you to know nothing but positive thoughts are coming back your way. I will continue to keep you all in my prayers and will get updates from your blog and your mom as often as possible. God bless you and the two men in your life!!
    -Desiree Headley

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  12. Jamie, you amaze me everyday. You find light everywhere you look and I love you for it. Always thinking of you and always smiling when I do! Love you! Michelle-elle :)

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  13. Hey Jamie,
    So sorry to here of your condition/circumstances. Your fighting attitude and will to persevere will certainly pull you through such daunting times as these. Wishing you all the best with your treatment and recovery. Stay strong and keep your head up! You will overcome this. Trust that.

    Reid

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  14. You're positivity is so inspiring, Jamie. You've ALWAYS been a bright spot in everyone's day and now it's our turn as people who love you to keep reminding you how incredibly strong you are and how fierce you can be. You are indeed fighting for your life. And I hope you know and truly believe that you are not fighting alone. We DO have your back and we WILL step up if/when/how you need any of us. Got it, sister? xo.

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  15. Jamie,
    I could not bring myself to read your blog until today. I am so glad I have. Thank you for sharing your thoughts, fears, love and strength. I have no words to share my feelings, hey seem to be burried under my mounds of fat and fear. Yet, I can share that like so many others I want to help you and Jeff anyway I can. Please know that I think of you every day and have been thinking of when I used to call you Rachel(Hunter). Please keep strong and keep writing.

    I am grateful that I know you.

    Thank you.
    Love,
    GP

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  16. Hey Jamie - Wiggles I says hi and wants to know when she can babysit Kai for you. Wiggles II says HURUMPH! And Wiggles III doesn't say much yet, but she's drooling up a storm!

    You are amazing. Always know that.

    Linda

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  17. Jamie-I've been thinking about you all day. I hope they are able to get a lot of the tumor with the biopsy and that they can grow a large number of cells with it. Doctors change course as they reevaluate and get more data. That is a good thing.

    You are being so strong and brave. You are constantly in my prayers.

    Carol

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  18. Hi Jamie, flexibility is key. Sometimes we wonder why certain things are happening and later the reason becomescrystal clear. I'm certain that later yesterday's change in direction will make itself known.

    I hope that the biopsy went well today and that the IL-2 works well even if that means that it makes you ill. Sorry ):

    Tomorrow is the day when you are reunited with your baby boy! You must be so very excited. That's what it's all about, isn't it?? Enjoy him and your wonderful husband, family and friends.

    Jennifer

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  19. Jamie and Jeff,
    Maybe if you leave an item of clothing with your scent on it with whomever holds Kai, Kai will feel like you are close when you have to be in the hospital.

    I think of you continually and am impressed with your focus and positivity.

    I believe in the health benefits of a positive outlook.

    Faye from California

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  20. Jamie,

    Thinking of you today, matter of fact, I have been thinking about you everyday. Funny how so many years can go by without communication between two people,life took us down different paths, no fault of anyone's, but when the going gets hard, the tough get harder and we all stick together.

    Everyday I ready your blogs, tears fall down my cheeks...you are so amazing, brave and positive, and I admire so you much for that. You are a very incredible women! I shared your story with co-workers, friends and family, spreading the word of having a childhood friend in need of support and prayer...it is so amazing how many people have asked about you since. The power of prayer is incredible, you have so many people thinking of you, praying for you, talking about your situation to others, it is so wonderful to see how people come together during difficult times.

    I have no doubt that you will fight this to the very end, you will defeat anything that comes your way, you have hundreds of people fighting with you, you will get through this!

    ♥Sara

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  21. Jamie,

    You are truly an inspiration. Any chance I can swing by today for a hug? Would love to...

    Love,

    Missy

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  22. Jamie,

    I read your posts with tears; then, get a grip and remind myself how strong and courageous you are. Jamie, you will beat this, of that I am sure. Praying for you and thinking of you everyday.

    Love you,
    Robin

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