Thursday, June 2, 2011

June 2nd

The results are in and overall it's great news. The tumors in my pancreas and liver are continuing to shrink and the scans didn't show anything new. So, that's fabulous. I do, however, have a node on my neck that you can feel from the outside. The doctors are suspicious that it is melanoma. They took six needle samples of it today. They looked at four of the samples and only saw fatty tissue (no lymphocytes). The remaining two samples they didn't look at; they took them directly to the lab for testing. We will find out the results in about a week. If the lab determines that the node is melanoma, then we will have to do a new treatment (most likely a cell-based treatment like the TIL treatment). If the test is inconclusive, or even if it determines it is not melanoma, then they will take out the node to see what it is. If they take out the node and determine it is not melanoma, then that's fabulous, we are in the clear, the IL-2 is still working and we go about our lives as planned for as long as the IL-2 keeps working. If they take out the node and determine it is melanoma, then we do the same thing, because I cannot get another treatment once the node is removed. Because the other tumors are shrinking, if I were to get another treatment after removing this node, then they wouldn't have a tumor to measure the treatment's success against. So, if the lab determines that the node is melanoma, then we leave it in and I get another treatment, the success of which will be measured by the decrease in size of the node. If the lab results are inconclusive, but we remove the node and it turns out to be melanoma, then we just wait and see how long the IL-2 keeps working in the other tumors. The best result would be for the node not to be melanoma. I'm not sure what I think would be the second best option. I don't want to do the TIL treatment unnecessarily, but I also don't want to spend every month terrified of my scan results. Fingers and toes crossed that it is simply not melanoma. Considering everything else the IL-2 can do to your body, there's no reason for me to believe it can't cause a fatty node to develop. That's my story and I'm sticking to it until I hear otherwise (which isn't going to happen). So, the news today was overall very good. The tumors are continuing to shrink and that's what we are hoping to happen. Champagne all around.

I didn't mean for there to be so much time between this post and the last. I meant to keep current on what was going on throughout May. But it turned out that May was my escapism month. Once we got the results of yesterday's scan, I knew we would be planning for next steps - whether they be more treatment (which of course they won't be) or returning to work soon. Either way, I would have to do something. But in May, before we knew the results, before I would be able to think about preparing for what's next, I just got to be. I got to hang out with my fabulous baby, see friends, and not think about what might happen next. I found that I didn't want to blog because then I would have to remember that I have cancer. If I didn't blog, and didn't have any doctor's appointments or treatments, then I could just pretend to be my regular self instead of my cancer self. I needed a break from my cancer self. Since my last post, Kai and I have started taking a weekly music class with our friends Renee and Thatcher (who is just a few months older than Kai). It is every Tuesday. Nobody in the class except Renee knows that I have cancer. I'm just a regular mom with a baby and we take a music class. It's great. Also, Jeff and Kai and I took a family vacation to the Eastern Shore of Maryland. We stayed at a Hyatt family resort and it was absolutely wonderful. There were hundreds of kids and babies all around, which made it a perfect place to take a little one. We took Kai in the pool for the first time and he loved it - we went swimming every day. I wanted to live there. It was a fabulous first family vacation and will, I'm sure, lead to many more. Otherwise, we basically just hung around at home, and with friends/neighbors and family. It's fantastic getting to spend time with Kai. He is such an amazing little person and I am so thankful for this extra time at home with him. He continues to develop in leaps and bounds. He doesn't seem in a hurry to get moving any time soon, but he sits up perfectly, plays on his own for long periods of time, expresses his wants and dislikes, and reaches for things and people (which is my absolute favorite). It's just incredible watching him grow. While I don't want to wish his baby time away, I am anxious for him to be able to talk, because I bet there are things going on in that mind that I would never dream possible.

There has also been some time in May that I have been teetering on the emotional edge. There are times when the reality of what is happening crashes over me like a huge wave of despair, and most of the time I feel like I have to keep moving or else my mind will break. So when I say May was my month of escapism from cancer, I mean that in a literal sense, to the point where sometimes I could pretend it wasn't true, and even had to pretend to make it through the day. People have a great capacity for dealing and surviving, and I will not be an exception. But it is hard. It is scary and it is sad and it is angry and it sucks. But that's all part of this magical journey and I am thankful for the depth of emotion I am allowed to feel - across both ends of the spectrum. I'd rather feel a lot of things deeply than nothing at all. So, I embrace the negative with the positive and know that it is all working together to make me stronger. I have no doubt that I will survive this battle; it is just the length of the fight that is in question now.

I am hoping that it doesn't take a whole week to find out the lab results. I am sure that Dr. Schaub will call as soon as he knows anything. He and Drs. Hong and Rosati will be rotating out of the surgical branch in July, so if I have any treatments after this month, I will have new doctors. I'm sure the new doctors will be wonderful and I fully understand the necessity of the fellowship program, but I wish it weren't the case. I wish I could continue to be treated by the same doctors who began my treatment. But I'm also certain that the node will not turn out to be melanoma and the IL-2 will cure me, in which case I will have been treated and cured by only one set of doctors. If there is no more treatment to be done now, I am planning to return to work July 5th. I'm only going to the office three days a week for now. We found a fabulous woman who will watch Kai in her home three days a week. She watched the two kids next door - who are now in Middle School and about to go off to college (Cornell), both of whom are super fabulous people - so I'm excited for her to be part of Kai's life too. It's somewhat difficult not knowing the lab results right now, because I can't begin mentally preparing for what's next. But I guess that's not such a bad thing and now I have one more week of escapism. And for that I'll be thankful.

Today I am thankful for the fabulous news that the tumors continue to shrink; for the continued support of our amazing neighbors and MMG family; for our fabulous friends and family; for my mom who is staying with me and Kai while Jeff goes away for work this weekend; for the absolutely gorgeous weather; for all of the continued comments, emails, texts, phone calls, and letters of support; for all of the treatment options still available just in case; and as always, for my fantastically wonderful husband who planned such a perfect vacation - I love you, I love you, I love you, and our perfect baby Kai. Your normal won't always be cancer normal, little one. Soon you will just have a regular normal like everyone else; I promise you that.

7 comments:

  1. Young lady, you take all the time you need for yourself. You have a realization of how important time is. Your news is encouraging. Keep that positive attitude. You will do this, Jamie. You are a fighter to the nth degree. Enjoy each God given moment. God bless you and yours. Don't overdo the partying. Take great care of the family.

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  2. Jamie-
    The news is good, if not great. We all know you are beating this so, the new node is NOT melanoma. Can't be. Be happy sister, what an amazing month and vacation, lots and lots of time with that beautiful baby. Hug him for me. And you will be back at work on July 5. That's the plan, no diversions. Your results will be good and we can celebrate at lunch.
    Love, love, love you sister,
    Chin up, so many thoughts and prayers supporting you,
    -Donna

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  3. Just like life--mostly good, but not perfect. The way I see it, you are still in that top 5%, just as we thought. I think the hardest thing for you, even as a cured person, will be the realization that nothing will be really the same. Just as you will always be filled with the sunshine of the blessings that have been given to you, so also will you experience the shadow of cancer. Each check-up will produce some anxiety, no matter how far from 2011 you get. But you will handle it every time, with grace and courage and the support from those closest to you as well as those of us out here in cyberspace. And come on, Kai's normal will never be like everyone else's normal--he has amazing parents and grandparents, he is loved enormously, and everyone in his life wants the best for him. Don't even begin to tell me that his situation is even close to normal. I think he must be top 5%, too!

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  4. Wonderful news Jamie. It's awesome that all you went through during your IL2 treatments is showing to be beneficial and is continuing to shrink your tumors. I'm going to remain confident that your node is just fatty tissue and nothing more!

    I'm happy that you had a few weeks in which you were able to escape, both literally and figuratively. There's nothing wrong with living as if this diagnosis is not real -- it's been working for my husband for 27 months and from what I hear it's a great way to think.

    I wanted to share with you a link to my friend's carepage site whose husband also has melanoma. I believe I may have shared this before but if not, here it is:
    http://www.carepages.com/carepages/boblawrencesjourney

    Laurie just posted today that Bristol-Myers Squibb and Roche Holding AG said
    on Thursday they would evaluate their respective cancer drugs as a
    potential combination therapy for metastatic melanoma. This is the most awesome news and I'm sharing it with you so you know that treatment is continually evolving -- in the unlikely event that you need it! (:

    Best wishes for great test results and a happy summer for you and your family.

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  5. Love you, sister. You still got this.

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  6. Jamie,

    Can I suggest that you read Cancer: Step Outside the Box by Ty Bollinger? He has some pretty amazing things to say about alternative treatments for curing cancer, especially some interesting things about apricot seeds. I thought it was a very well reseached book and it got 5 stars on Amazon. I think it would be something worth reading and you might find some things to help you. God Bless and I will be praying for you.

    Sharon

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  7. Jamie,
    I am so happy for your and your good news, and i will be praying for more good news to come in the next week.
    One day at a time:)
    Prayers and love to you my melanoma friend!
    Samantha Nye

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