Sunday, February 20, 2011

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 15th 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.


  1. Hey Jamie and Jeff,
    What a wonderfully family centered week you all had! I can't think of any better way to build up physical strength and mental frame of mind to take on round 2. Kai's little blessings to help Mommy are the best though... especially sleeping through the night all week! What a son!!

  2. Jamie - boo - you know your body best - if you don't feel the pain, it's on its way out. Kick that tumor gone!
    best to you this week. you are a strong woman - and will be even stronger each day.
    love you, amber jamber

  3. Hi Jaimie,

    I just want you to know that I will be praying for you, for God to continue to give you the strength and the courage!


  4. Jamie,
    You sound so good ...and so ready! Your team is with you. Go for it!
    Sending love.
    Joy G

  5. Hi Jamie

    I am an old friend of Heather Innes. We've been in touch on FB for a while now. She asked me to read your blog and offer prayers. I want you to know my prayers are with you and I think that your story and your strength are truly inspirational.

    I have not had to deal with cancer myself, but my life changed when a friend was not able to win his battle with cancer last year. I was a runner from way back in the 1980's and I planned to run my first marathon last year anyway. When my friend passed away, I decided to run for one cancer-related charity last year and this year I am running for two. My focus on making sure I enjoy the here and now, giving to others, not taking anyone for granted, and trying to use my strength in my day to day life changed entirely.

    After blogging a lot about what I thought my running for myself and running for someone else meant, I wrote a short novel that I am now using to help raise money for the two charities.

    My prayers will be with you day by day, and I look forward to continuing to read about the journey that you can win!

  6. Hi, I ran across your blog while setting up my blog. My husband is a stage III Melanoma patient and I wanted to say hello and off my prayers to you and your family. :)

  7. Yeah, baby! That's what I'm talkin' about! Both baby Kai for sleeping and you for being so incredibly brave and so inspirationally wise. Love you, Jamie - YOU GOT THIS ONE, too. xoxoxo

  8. Jamie,
    You are amazingly brave!
    I can't wait to see you beat this stuff! Please keep writing, it is such a blessing.
    GOD loves YOU!
    Praying for healing...

  9. Hi Jamie,

    I look forward to reading all of your posts because your strength continues to inspire me beyond measure! My children are grateful for you too :). Over the past few weeks, I have tried to lighten up a little and just enjoy all of the moments with them. What's the big deal if they are 15 minutes past bedtime if they get an extra story and have a super big smile on their face as they fade off to sleep??? I am praying for you daily!!

    Carrie Smith

  10. Jamie
    Your story of strength to beat this cancer and love for your husband and son is inspiring. You are an amazing writer. This blog should be a movie someday. I love reading about your relationship with your baby boy. My son Colin is almost 8 months. You express so beautifully the love a mother has for her baby. Just to give you some wonderful things to think about while you are going through your next treatment. This was my experience with Colin today. Just visualize you being home feeling well and going into Kai's room. There he is standing up in his crib for the first time waiting with a huge smile on his face anticipating his mommy picking him up to start the day. These amazing moments in life can give you the strength to win this battle and rid your body and your life of cancer. You have so many more exciting things to look forward to in the next few months with Kai. It is so hard to believe that you can but you will love him more and more everyday to the point it makes you cry tears of joy. We will continue to pray for you, your husband and your baby boy.

    Margaret (Wilson 96)

  11. I am thinking of you tonight and round two tomorrow. Peace and love.

    "Hope is faith holding out its hand in the dark." ~George Iles