Friday, February 11, 2011

February 11

I am home. Sweet, wonderful, glorious home. My baby is huge. He looks like he ate the baby I left and became super baby.  I can't believe how much bigger and older he seems after not seeing him for a week. I am so happy to be back with him and my sweet Jeff again. I can't even think about leaving again in 10 days. I have to just take each of these days as the gift that it is and cherish all the time I have. I walked in to a sparkling clean house thanks to my Uncle Bruce and my mother-in-law.  It's was so fabulous to come home to such a clean space after feeling dirty and germy in the hospital for the past week. I am so thankful they took the time to make everything so perfect for my return. I also came home to more care presents from work; numerous packages from friends for us and for baby Kai; a plethora of motivating, uplifting cards; and a melanoma support sign in our neighbor's yard. I continue to be blown away by the amount of care and love that I am receiving from everyone. I just can't express how appreciative I am for all the time people are taking out of their precious lives to support me.  It really means the world to me and gives me the strength I need to continue to fight each day. 

Three wonderful things happened yesterday. First, and most importantly, baby Kai rolled over! I didn't see it of course, by his grandparents did and we're all very proud of our little man. Secondly, Drs. Schaub and Phan both told us that they saw elevated white blood cell activity in my blood. This is a good thing, because the whole point of the IL-2 treatment is to stimulate my immune system to rage a war against every foreign substance in my body. They said that, while there is no data to prove correlation, anecdotaly the majority of people who respond to IL-2 show the same activity in white blood cells that my blood is showing now and they are hopeful that I will show a response to the treatment. FABULOUS! Thirdly, Dr. Schaub said that it's too early to tell officially, but it looks like my new cells are growing for the TIL treatment! So right now, I have three good options - maybe I will respond to the IL-2 and won't need anything else, but if I don't, the new cells are looking promising for the TIL, and we still have the BRAF-dependant treatment to consider as well.  I am filled with so much hope right now. I am so thankful that we seem to have a number of good options ahead of us. We are so very lucky to be where we are. So many people who suffer from melanoma don't have this many possibilities. Everything just keeps coming up in our favor and I feel so filled with joy and fortune to be in this position. I will go through a never-ending number of treatments to live to see my son grow up.

Recovering from this past round of IL-2 is going to take some time. I'm not sure I will feel better before I go back for the second stage. Mainly I am extremely fatigued and the skin on my face, chest, and back is peeling, sore, and itchy. My body feels like it's been through battle. It hurts to keep my eyes open. Now that I'm home, I want to just go about life as usual - caring for baby Kai, doing everyday chores, etc. But I can't. I am going to have to accept this healing time. Learning to be still is one of the lessons this journey will teach me.  Last night, my nurse lifted up the back of my shirt to help me put on lotion and she said, and I quote, "Girlfriend, if I had this situation going on, I would be such a bitch." While that was hilarious, it also made me think about the choices I make regarding emotions in my daily life. Of course many emotional responses are instantaneous and happen without putting much thought into them, like sorrow, and disappointment, and joy. But it's also true that I actively choose to have negative emotions each day. Every time someone cuts me off on the beltway, or takes too long checking me out at CVS, or gives me too many automated phone options before I can speak to a person, I am annoyed, frustrated, and even angry. So now I am dealing with the thing that is making me angry, plus the anger on top of it. And this is a choice I am making. There is no reason I have to have an immediate negative reaction.  There are many days when I'm in a particularly good mood where an instance doesn't bother me as much as it does another time, because that day I am choosing not to be upset. And I am realizing, during this journey, that the more I am able to focus on the big picture, remembering what is really important in my life (family, friends, and love), the less I care about mundane annoyances and the happier I am in general. So I will carry this lesson with me. I will remember always that my overall happiness is so much bigger than what might be happening at any given moment. From now on, if I'm angry driving I will be thankful to be driving home from work  because that means my treatment was successful; if I am waiting in line I will be thankful I am well enough to run errands; and if I am on hold too long I will be thankful that I am lucky enough to be the recipient of whatever luxury service I am calling about. I will roll with the punches and give thanks I am here to experience them at all. Because when it comes down to it, that's what I am fighting for. I am fighting for the chance to experience each new day and the unique opportunities each day represents, and if I forget that, well than I haven't learned anything at all.

Today I am extremely thankful for the fantastic care I received at the Clinical Center. I have come to think of the doctors and nurses as my friends. I love learning about their lives outside of the hospital and they show genuine interest in mine. While I can't say I'm looking forward to the pain of round two of the IL-2 treatment, because of Dr. Schaub, Dr. Phan, and Dr. Hong and all of the other wonderful doctors who are trying so hard to cure me; and because of Christine, Jesse, Candis, Erin, and Ann, and all of the other fabulous nurses who do everything within their power to ease the pain and remind me I am a person, I am not afraid to do it again. I know that I have so many strong, dedicated, caring people who are fighting this fight with me and who will, without a doubt, cure me. And for that I am thankful. I am also thankful for every single response posted to this blog; each card and gift of support I receive; the continual overwhelming support of my MMG family; the fabulous night's sleep I am about to have with nobody coming in to take my vital signs; my mother- and father-in-law for taking care of the baby and so much more while I was in the hospital; my wonderful family and friends; and, as always, my absolutely perfect husband and my most precious baby Kai. Words cannot express how happy I am to have you in my arms again. For such a little one, you are the whole world to me.

11 comments:

  1. You have learned lessons that are wise beyond your years. I am so proud of you. Your commitment to living each day with joy and thankfulness reminds all of us to look at life through those eyes. Your courage and tenacity push us to measure up and walk our own life journeys with a new surge of positive energy. You are a light that radiates healing. Sleep well, dear one, in your own bed with your family close by cushioned snugly by all the love and prayers that are surrounding all three of you from so many people near and far.

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  2. Welcome home Jamie! I am so glad that you are home with your boys, that you are showing a positive response to the first round of IL-2 and that you have so many possible cures ahead of you. Enjoy the comforts of your own house and take the time to sit back, relax and heal. All you need to do over the next 10 days is love on baby Kai and Jeff, refresh and eat cookies!
    Hugs - Ryanne

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  3. Sweet dreams Jamie, Jeff and Kai. ~Judy

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  4. Welcome home! May the next 240 hours bring you the comfort and relaxation you deserve. Sending you a million hugs, Michelle

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  5. As you said today, don't worry about the small stuff like traffic, waiting in line, and assorted other minor things. You are gaining patience, young lady. The kind that leads you gently through places others go angrily. You are becoming the person that everyone wants in their presence. We'll all be glad to share the coming years with you, Jeff, and Kai. It may just be a small part for some of us, while family will be so glad for the extra time you are fighting to give them. Your baby Kai is growing physically while you are growing in so many other ways. Your emotional strength and spiritual growth are so much to admire. You enjoy this wonderful time at home. You use it for healing time and to kick start those white cells that are taking notice of changes in your body as you experience those changes in so many ways. Keep the faith. NKH

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  6. WOOT, WOOT! WELCOME HOME, SISTER! Soak up all that live love! Again, your post continues to teach life lessons - thank you. I've always looked up to you, just for being yourself - and now is no different. You continue to amaze me, all of us. This thing has got nothing on you. It OBVIOUSLY underestimated the power of love and support from loved ones, not to mention your sheer determination grow old with your husband and raising your son. Love you, Jam. Time for some R&R. xo

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  7. I am so glad you are home with Kai and your family. Enjoy the next several days and let your body heal as you are surrounded by the love of family and friends. You have taught all of us so much thru your posts. I am certainly a better person and look at ordinary things in a much different light. The positive news from the doctors is very encouraging. Keep strong and always remember you have an army cheering and praying for you. You will win this battle. Andy

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  8. Hey Jamie, Hope this finds you just simply relaxing and soaking in all the surroundings and comforts of home.
    The news from the doctors is heartening. Yeah!
    Kai is rolling over! Another, yeah! Memorize all of those little milestones and let him entertain you with his accomplishments over and over again. When Reid started motoring, the funniest one that I can still picture to this day is when he got on all fours but didn't quite know how to move forward or backward... all he did was rock back and forth like he was stuck in neutral. And the whole time he had a look of total surprise and elation on his face that was saying "Well this is new, woohoo!" Too funny!
    That'll be happening to Kai before you know it! Can't wait to hear when he gets on all fours :-) As always, lots of hugs and love ~Judy

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  9. Continue to think of you each and every day Jamie. Many prayers and positive thoughts...

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  10. Kids always seem to change when you aren't around them. My 3 year old son was just at Grandma's for the weekend so we could redecorate his "big boy" room. When he came back on sunday I swear he was speaking more clearly than he was on Friday! I know you will be sad to be away from Kai for these treatments, but you are doing it for such a wonderful reason - keep up the fighting attitude!

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  11. Welcome home Jamie! Your strength, courage and positive outlook are truly inspirational. I can only hope that others take your journey and learn from it as much as I have.

    All I have left to say is FRUIT SAAAALAAAAD! :)

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