Friday, December 9, 2011

December 9

We got the latest results last Thursday. The tumors in my organs are still shrinking and there aren’t any new tumors anywhere. But the subcutaneous tumors are growing slightly, so there is more work to be done. I am going to have scans again January 11th (results on the 12th). Then, barring any miraculous tumor shrinkage, I’ll have another surgery to remove one or two tumors on my back so they can harvest them to grow cells for TIL. The cells they harvested from the tumor on my ovary did not grow. Drs. Miller and Yang think it is because they were harvested too soon after having chemo. So we are going to wait another month to get further from my last treatment and then try again with different tumors. Assuming they are able to grow new cells from the tumors on my back, after they grow I will do another TIL treatment. The one at the top of the list right now involves almost the same process as the IL-12 protocol – chemo to kill my existing cells, then receiving the replicated cells as replacement – but instead of the cells themselves being engineered to express IL-12, I will receive 10 doses (one per day) of IL-15 after receipt of the new TIL cells. Like IL-12, IL-15 is theoretically specifically targeted to fight tumor (rather than elicit a whole-body immune response like the IL-2).  The standard “tried and true” TIL method involves receiving chemo, then the new cells, and then IL-2 to stimulate the immune system and “rev up” the new cells. The IL-15 protocol is the same as this therapy, except I will receive IL-15 rather than IL-2 at the end. Dr. Yang said they are seeing fewer side effects with the IL-15 and that they believe it may ultimately replace the IL-2 in the “standard” TIL treatment. So that’s the news and the plan. For now we wait and hope beyond hope that my current cells just need a little more time to fight and will show better results at the January scan. However, as my sweet husband pointed out, either way, I am still better today than when we started this craziness, because the tumors in my organs are shrinking and/or virtually gone and those were the most dangerous to my health. The subcutaneous tumors are not harmful to me physically; Dr. Yang said they could grow exponentially and still not pose a threat. But their continued growth indicates that the melanoma is still active in my bloodstream, and there’s no telling where it will land next. I am okay with these results. I am happy to have a little time to relax, continue to recover from the last treatment and more recent surgery, and go about my daily life with Jeff and Kai. It is a relief knowing that I have at least a month until we do it all over again. The most unfavorable part of the IL-15 protocol is that I will be in the hospital for even longer this time. I will receive the IL-15 for 10 days after I receive the new cells, which means 10 more days of being in the hospital away from Kai. And although I am happy with the plan in place, that part of it makes me want to throw myself on the floor and have a good ole temper tantrum scream-cry-and-kick fest. Fingers crossed for a holiday miracle. I’m still holding out hope for a fresh start in 2012.

There is a clinic on the third floor of the Clinical Center where we go to meet with my doctors for outpatient appointments, including when we receive scan results. In the waiting room of the clinic, the TV always plays the Game Show Network. I don’t know who decided this but I have to give them credit because it is the most perfect channel for those of us waiting for important news; news that could indicate life or death. A soap opera is not compelling unless you are a regular watcher, a daytime talk show is too self-helpy for the moment, and the news just adds an extra layer of anxiety to the already tense situation. But a game show is perfect. It’s relatable to personal experience (I am anxiously waiting to find out if I’m winning or losing) and it’s completely frivolous (which is exactly what my mind needs to stop it from thinking deeper, mainly made-up thoughts).  When we were waiting this past Thursday, the show Deal or No Deal was playing. The premise of this show, in a nutshell, is that the contestant randomly picks numbered cases from a group of super models, hoping to win a lot of money based on the numerical cash value listed inside each case. You start with a case and hope that it contains a large amount, and by guessing the other random cases, you get a better picture of your odds of winning with your case. That’s it. There’s no strategy, there’s no challenge. You randomly guess numbers and hope you get lucky.  This is what my treatment options feel like.  My treatment options are hidden in the cases, my doctors are the super models (which is not to belittle them in anyway but purely for use in this metaphor, although Drs. Miller, Hessman, Stewart, Phan, and Rossati are all gorgeous), and my hope and determination comprise my starting case. I feel like I am randomly choosing cases and hoping I am lucky enough for the treatment inside to work.  There’s no way of knowing beforehand what my chances are. Sure there are statistics regarding response rates, but these statistics are difficult to interpret and apply across a wide range of patients (age, severity of disease, previous treatments, etc.). But melanoma, like many cancers, is a very personal disease – what works for one person may not work for another.  Even though I am confident in my treatment plan, and I have educated myself as much as possible about the options, when it comes down to it, I am just guessing and hoping for luck.

On all game shows, there is a manufactured heightened expression of anxiety. They create intense drama over meaningless situations to keep the viewers interested in the game. If you take the anxiety you feel when Ryan Seacrest cuts to commercial before reveling who is safe on American Idol, and you magnify that by one million percent, that is the anxiety that lives between getting the scans and finding out the results. During this time, the results exist; someone knows them and that someone is not I, and that is an incredibly maddening feeling. There are a lot of important, potentially life-altering results for which we have to wait - getting into a certain school, doing well on a test, landing a fabulous new job, buying a home, finding out if you are pregnant. Waiting is difficult for everyone.  It’s difficult to eat and sleep, your heart races, your mind wanders, your stomach is all tied in knots.  But if you are disappointed when you finally find out the results, you feel badly but you accept it and do something else instead. Regardless of how much you may want something and how seriously you think your world will fall apart if you don’t get the results you want, you still get to live. For 24 hours, approximately every 4 weeks, we are waiting to find out if my life is going to be longer or shorter.  During the waiting time, the answer exists and we don’t know what it is; somebody knows if I am going to live or die and we just have to wait for them to tell us. That time is, hands down, the most mind-numbingly stressful time I have ever experienced. If I combine everything I’ve ever wanted in my entire 34 years of life-including all of the hope, joy, stress, and anxiety that goes with it-it would comprise a single rose in the thousand acre garden of desire I have for my doctors to tell me that a treatment is working and I have my life. There is nothing else in this void, there is only the waiting. There are no ideas, no creativity, no making of plans, no decisions of any kind – just a constant, whole-body plead for good news. I could have never imagined the intensity of this waiting before going through it myself. From this lesson, I will forever feel and express my utmost empathy for people I know who are stuck in their own life-altering waiting times. And if you happen to be there now, stay strong, I am sending blankets of love to provide comfort during each decade-long minute until you find out that you too will live indeed.

But now we are past all of that for this round and I’m happy in this time of being free at home with Jeff and Kai. It’s fabulous to have this time alone with Kai, knowing we can do things like attend playgroups and story times and our plans won’t be interrupted by treatments for at least a month and hopefully more. Kai update: he is adorable, hilarious, brilliant, and all around perfect. He is almost 14 months old now and is about to take off walking on his own any day now. He’s a super chatterbox and his vocabulary grows every day, as does his ability to communicate accurately through body language. It’s so exciting to hear/see what he has to say. Of course I love everything about him, but I think the most intriguing part of his personality so far is his sense of humor. He is hilarious on purpose. He understands why things are funny and can translate that across funny actions. He loves to perform, loves attention, and loves to be acknowledged with laughter. It is really exciting to watch his personality grow; watch him discover and learn and then react. Regardless of what he chooses to do in life, I firmly believe that he will make those around him genuinely happy. And for that I am thankful.

The most difficult thing to see in the Clinical Center is children, who are there for treatment, and their parents. As a patient, it breaks my heart to know part of the fear and pain their little bodies will undergo during their treatments. As a parent, my heart breaks for the mothers and fathers of these little ones, who have to sit back and watch their children be in pain and have a constant worry, fear, and dread about each outcome. When I pass other adult patients, we smile at each other in an acknowledgement of sister- and brother-hood. But when I pass a family, the pain comes in a heavy, dark ball right from my stomach, to my heart, to a cascade of tears. There is a place on the NIH campus called the Children’s Inn at NIH. It is a non-profit institution that lives on the NIH campus. The Children’s Inn provides long-term lodging to families whose children are undergoing treatment at the Clinical Center. Parents and siblings can stay in the Inn (which is right across the street from the Clinical Center), and the child-patients can also stay there at the discretion of their doctors. It is a beautiful, cozy, warm, happy, family-friendly Inn that does everything it can to alleviate stress and provide a homey environment to families who are experiencing intense amounts of worry and pain. I know this is a time of year when people often consider making charitable donations and are looking for deserving institutions. If you are, you can learn more about the Children’s Inn at www.childrensinn.org.  I do not usually use this space to ask for help or promote causes. But there is nothing more worthy of support than the health and happiness of children. Being thankful for the health of our own children and families is something most of us reflect on during the holidays. This year, please say a prayer (whatever that means to you) for the children and the families whose hearts are begging for mercy and who genuinely need a holiday miracle; children whose Christmas lists are addressed to their doctors rather than to Santa Clause this year. May you get everything you wish for, my tiny warriors, next year will be better for us all.

Today I am thankful for the vast amount of time our families have given out of their own lives this year to stay with us and support our every need; I am thankful for the continued overwhelming love and support of our beautiful friends, both old and new; I am thankful for the thoughtfulness and generosity of old friends who are going out of their way to come back into my life and offer support; I am thankful for visits, texts, e-mails, and calls reminding us how much we are loved; I am thankful for our latest results and that nothing new has grown; I am thankful for the marriage of June and Peter, an amazing woman and a man who deserves her; I am thankful for the marriage of two other friends who will remain nameless but who know who they are; I am thankful for holiday miracles, wishes, and dreams everywhere; and, as always, I am thankful for my amazing husband Jeff who could not possibly be a better husband and father even if he tried – Kai gets his perfection from you my love, and for our perfect baby Kai. Our greatest gift to you this holiday is the love that flows in waves from every pore in our bodies to cover you and hold you every second of every day. And your greatest gift to us is your smile and the knowing twinkle in your eyes. You are loved, my sweet baby, you are love.

Ode to Laura, a co-worker, friend, and sister warrior who graced every life event with a limerick and a voice from the angels:

Your life is a beautiful song
A tune both graceful and strong
Now we sing for your solace
As you have for all of us
Through love your light will shine on

9 comments:

  1. Jamie,
    Thanks for the update. I think of you and your family daily. You all are in my prayers. Your post is so incredibly on point on several areas. First, that waiting time. It is the definition of anxiety. It is so difficult to explain this, yet you nailed it. Secondly, your empathy for the children and their families at NIH. So many of us go through life oblivious of the things some people have to deal with daily. If only people took time to look around and see these things, the world would be a better place.
    Best wishes to you and your family for the upcoming holidays. May you find success in 2012 in your quest for NED.

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  2. Beautifully written, Jamie... thanks for sharing, and we can't wait to see you all soon!

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  3. I have always said that Shakespeare's "Julius Caesar" has a quote to cover any possible life situation--actually, it was a ploy to get my 10th graders to be a little more enthusiastic about reading the play. But I partly believe it--and for your situation comes the quote from Brutus after he has resolved to take part in the assassination plot but before the wheels are set in motion:

    Between the acting of a dreadful thing
    And the first motion, all the interim is
    Like a phantasma or a hideous dream;
    The genius and the mortal instruments
    Are then in council, and the state of man,
    Like to a little kingdom, suffers then
    The nature of an insurrection.

    Ok, so it's not spot-on, but that sense that the time in between is lousy does come through. This time is the time that I think takes the most courage--this cancer nonsense is getting old so it should just go away already, and yet it doesn't. You still have to deal with it. That stinks. And somehow it is really difficult to be as grateful as you are for all that you do have. We are grateful to you, too, for pointing all of us to the beautiful, the important, and the true in life. Writing during the long waits surely comes with great difficulty. Thanks for giving it a shot. Hope I get the chance to see you over Christmas--depends on kids' flight times, etc. In the meantime, let your "daily life" be one Christmas miracle. Sense the light and love that we are sending your way.

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  4. Jaime,
    I am so amazed at how inspirational you are with everything you post. You are in my thoughts and prayers; for some reason even more so at this time of losing our dear friend and coworker.
    I appplaud you for continuing to live so righteuosly, for continuing to hope endlessly and for continuing to bless others the way you do.
    You are wonderful. I wish that somehow our paths were more more entwined. Keep going with that joy!
    My prayers for you are for some peace-full time!!
    Jacquie

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  5. Wow, loved your comparison to Deal or No Deal with your situation. What # box did you choose? Enjoy each day and enjoy your family during this special season of Christmas. You will be the Deal champ. God bless you and yours, Merry Christmas.
    NKH

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  6. SO happy to hear your tumors are shrinking!! Jack and I were watching Finding Nemo the other day and I thought of you:

    "What do we do? We swim, swim" When life gets you down and you feel like you can't pull through, just keep trying, just keep hoping, just keep moving, just keep going, Just Keep Swimming.

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  7. Hi Jamie,
    I think your Mom said that you would be coming back to PA for Christmas. I hope you had a wonderful trip and lovely visit with family. I can imagine Kai's excitement and joy on Christmas morning!
    I wish for you, with all my heart, increasing health and peacefulness in 2012!
    Much love and many hugs, Judy

    ps Thank you for sharing the link for The Children's Inn. I can't imagine...

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  8. Wishing you a wonderful 2012. Go into this week with all the positive strength and thoughts you can muster. Jeff, you are a truly admirable man. You have done so well with your support in all the ways you professed to God when you were married. I hope the two of you will be celebrating Kai's second birthday and Jamie's remission next year. God bless your family richly.

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