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.