February 20

It has been a wonderful week of healing, resting, and reconnecting. I am feeling great – strong and ready to face round two.  We go back to the Clinical Center tomorrow.  I will get the first dose of round two on Tuesday morning at 7:00am. I am interested to see what happens this time.  Dr. Schaub said to expect the same symptoms as last time, since it’s the same treatment, my body should react basically the same way. I hope that’s true. As horrible as the side effects were, my lab values, blood work, and organ functions remained perfect through the entire treatment last time and that’s what I hope for again this time. When I swell up from water weight again, I will be thankful that my body is carrying the fluid outside of my organs.  It may be uncomfortable and ridiculous looking, but it’s not harmful. And on my 15^th trip to the bathroom each day, I will be thankful that my kidneys are functioning properly and that the dosing can continue. The doctors said that it will probably take fewer doses this time to elicit the same response, so I am hopeful that my hospital stay will be shorter this time.  But if it’s not, then I will be thankful I received as many doses as possible. Since staring the first round of the IL-2, I have not had any pain from the tumor in my pancreas. I had been having that pain for months, so not having it is significant to me. I think it means the tumor is gone. I have no science to back that up, and when I suggested it (only partially joking) to Dr. Schaub, he laughed slightly at my naiveness. But this is cancer we’re talking about.  Nobody knows exactly how it will respond and I believe that my scan in 5 weeks will show no tumors and we will be done with this. While I’m not looking forward to facing round two, I know now how quickly I can bounce back and I think that will be a great solace during the worst of the side effects. I am not afraid to do it again. I am fascinated but the obscurity of this treatment and I am extremely interested to see how I will react this time. Also, I trust my doctors and I know how closely they will be monitoring my care. I have only one real concern this time and that is around having a roommate during the worst of the IL-2. Last time I was extremely lucky and only had roommates in the beginning and at the end when I was recovering. I was lucky to have the room to myself during the worst days. I am hoping with all my might to be this lucky again – for my sake and honestly for the potential roommate’s sake too. If that wasn’t luck, and it was by design, then I am extremely thankful to the Clinical Center staff for that. Also, I am thankful that this is the worst physical pain I have had to endure in my life so far. Humans have an amazing ability to overcome and survive. Millions and millions of people have suffered physical torture on levels so far above anything I have ever come close to even in my worst nightmares. It is this suffering I will remember anytime I want to complain about my own. There are literally millions of people who would trade places with me in a heartbeat if this is the worst of my pain. I am thankful this is all I have to endure; I consider myself extremely lucky in life. This is nothing compared to the burdens of others and I will remember that every second of round two.

Baby Kai has slept through the night every night this week. And I’m not talking about 5-6 straight hours.  I’m talking about nights of sleeping 9:00pm – 5:00am, and 10:00pm – 6:00am.  The past two mornings he has awoken around 5:00am to eat and then has quickly gone back down until 8:00am. Also, he is napping in his crib as I write this. I had nothing to do with this. He did this all on his own. He heard me say the words “sleeping training” and he did it himself – he said, “No worries mommy, I got this.” He amazes me every day. I cannot even imagine a better baby.  There is absolutely nothing about him I would change. The same goes for my husband. Every day I realize how in love with Jeff I am. He is the most wonderful, supportive, caring man and I cannot believe how lucky I am to be married to him. I think so far in this journey, the lesson I am most thankful for is to not take anything (especially people) for granted; to cherish every act of love and kindness; to forget the little things and always remain focused on the greater love that surrounds me. I think it’s too easy to take our partners for granted. They are there with us every day and we just expect it to be that way. We forget to nurture and to surprise and to take a few minutes just to be in love. I vow to you Jeff that I will never take you for granted. I will always remember how incredibly wonderful you are. And I will spend the rest of my life trying to mirror the love and support you are showing me now. I will remain thankful for you always and I will remember each day how lucky I am to have you as my partner in life.

My mother- and father-in-law left today to go back home to New Mexico. We will all miss them greatly, especially baby Kai who had a wonderful 2 weeks bonding with his grandparents. They were a great help and we appreciate every day they spent with us. My mom is on her way back down now. It’s a changing of the guard because we can’t do this alone. She will be here approximately 2 weeks, or however long it takes me to recover from round two. We absolutely could not do this without the support of our family. Knowing that baby Kai is being perfectly cared for during the days we are at the Clinical Center is such a relief. And it’s fantastic for him too – no daycare and extra time with grandparents – exciting!

We haven’t done much this week. The weather was beautiful so we took some walks around town. On Friday we went to the Clinical Center to get the dressing on my PICC line changed. Otherwise, we just hung out at home, enjoying our week together as a family. I’m looking forward to the month between round two and the scan that shows the tumors are gone (after which we will do the IL-2 for rounds three and four). Just a few shorts days of treatment and then a month home with the baby. I will try to post tomorrow from the Clinical Center.  If I can’t, it is only because I can’t get online. I got a new laptop, so we’re hoping it’s easier to get the NIH wireless. My next few posts will be from the hospital, during treatment. I will post as much as possible like last time, but I have no idea how many doses I will get this time or how long I will be there. Maybe one dose will do it, or maybe another ten. We shall see…

Today I am thankful for the circle of hope and love that the neighbors have created around our house. Our neighbors on either side of us, plus the four in a row directly across the street all have melanoma support signs in their yards. It makes me feel like our house is nestled safely in a big hug of hope and for that I am thankful. I am also thankful for our wonderful family – Don and Diane who have cared for us the past 2 weeks, my mom who will care for us the next 2 weeks, and my dad who calls me almost every day and even text messages me in the hospital. I am thankful for all of the well wishes of support for round two from my amazing friends and MMG family; a great visit from Donna; Dr. Thambi, my medical oncologist, who called me on Friday just to see how I was doing; the gift of knowledge about what to expect this time; the dedication and care of my NCI doctors; and, as always, my fabulous husband Jeff and most perfect baby Kai. I can’t wait to see what you’ll learn this week, my sweet. While I will miss you terribly, I know this time that you will not forget me and we will pick up where we left off in just a few days.