Wednesday, June 22, 2011

June 22

Without a doubt, one of the things I am worst at in life is waiting. Waiting, waiting, waiting. There is so much waiting involved in this journey. My next scans are next week (Wednesday and Thursday) and I am so anxious about what they will show. If a tumor hadn’t grown in my neck, I wouldn’t be nervous. And even now, I’m still confident that the IL-2 is working and we will get good news on Thursday. But I’m sure there would be fewer knots in my stomach during these days leading up to the scan if that tumor hadn’t existed. I tend to get stuck while I’m waiting. It doesn’t matter what it is I’m waiting for, I am almost completely unproductive during waiting times. I should be getting Kai’s things ready for him to begin daycare in July. I should be making lists, and grocery shopping, and making food to freeze, and getting myself prepared to go back to work. Instead I am consumed by waiting. I know I need to get used to this, because waiting for results from the next scan is about to become part of our normal. I will get them every month, and every month the fear will rear its wide-eyed-tearful-angry head until we receive that month’s news and I can loll it back into a quiet slumber for a few more weeks. But these upcoming scans are especially important ones (for my own psyche). The previous scans showed that the original tumors are still shrinking and there’s no sign of new disease. But a tumor grew on my neck, so what does that mean? It could mean nothing important or it could mean the IL-2 will stop working, and all we can do about it is wait.

The surgery to remove the tumor went well. I had to stay overnight the night before the surgery because I was the first case in the morning, but I went home the next day, just a few hours after the surgery. I was under general anesthesia, so I didn’t feel a thing, and recovery has been easy.  A very strange side effect (and I’m not positive it’s even related, but the timing is very suspicious…) is that I have become farsighted. I can’t read anything up close. I don’t wear glasses and I’ve had perfect vision all my life, but since the surgery my vision has definitely been altered.  Strange. I am waiting for my doctor to call me back and hopefully she’ll just tell me that it’s normal and will correct itself soon. And if not, well then of course the tradeoff is worth it. It was bound to happen one of these days anyway – even though I am surprised every time I make this realization, I am not in high school, or even college, or even my 20s any longer.  My mom stayed with us last week to take care of baby Kai. She will be back next week to watch him again while I go for scans.  Thank goodness for moms.
My sweet Jeff had his first Father’s Day!  He’s such a fabulous father; he deserves to be recognized every day. My dad (who is also a fabulous father) and step-mom came for the weekend so we could all celebrate together. Jeff made his infamous ribs on Saturday, and Sunday we went out to breakfast and hung around at home with Kai. We have lots of fun things planned for the next few weeks. Friends we haven’t seen in over a year are coming for dinner on Thursday, Jeff’s cousins are coming over on Sunday, and next weekend we are going to the Eastern Shore to stay with friends for 4th of July.  In the middle of all that we have the scans, and I am confident that this cancer does not want to get in the way of our fun so the results will be only good news.  After we get good news next week, I have to start preparing to go back to work – my return date is tentatively set for July 11th. Because my maternity leave flowed right into crazy cancer leave, I will have been out of the office for 9 months. That is a long time. Even though the circumstances could have been better, I am extremely thankful for the extra time I’ve had at home with Kai. If we hadn’t been given this gift of a journey, he would have started daycare 6 months ago and I would have missed all of this precious baby time.

If it were possible to separate the worry out of this journey, leaving just the treatment, then I think undergoing the IL-2 would be worth the extra time with Kai. But the worry and the fear are such an enormous part of all of this. The emotional trauma is so much bigger and longer-lasting than any physical pain from the treatments, and it is impossible to divide this journey up into individual experiences even in my mind. But it is the collective experience that has been the gift. It is the excruciating pain coupled with the soul-warming love and support: the perfectly synchronistic melding of two extremes working together to change our lives forever. And through it all - all of the worry and fear, all of the anger and sadness, all of the pain and sickness - I am eternally grateful for the depth of the raw, love-filled, truth-seeking, experience-sharing, soul-touching humanity that embraced us right from the start and has continued to light our way throughout this journey. And I have learned that the only thing that matters in the whole of life is other people, period. I am thankful every day for the people who are loving me in so many different and meaningful ways, and I hope that one day I can find an appropriate way to express my own love and gratitude to everyone who so sincerely deserves it.  
Today I am thankful for the overwhelming, continued love and support of all of the extremely generous and thoughtful people who have touched our lives; I am thankful for those who have reached across distance and time to offer support as well as those who support us every day;  I am thankful for the IL-2, which I’m sure is still working and will be my cure; I am thankful for the ongoing, awe-inspiring support of our MMG family (and most recently for the fabulous wealth of books for baby Kai – we read them every day and he loves them) and our fabulous neighbors who are still boldly displaying hope signs down the entire street; I am thankful for all of our friends and family who remind us every day how much we are loved; and I am thankful with a debt that can never be repaid for my extraordinary husband Jeff whose dedication and strength I can only hope to live up to, and our perfect baby Kai. You are becoming an incredibly sweet, inquisitive, happy person, my little one. While I treasure every second and often wish I could stop time right here in these perfect moments, I also cannot wait to see who you will become, because I have no doubt that you will be far better than even the best of me.


  1. Jamie, so good to hear from you. I'm sure that the mixed emotions are hard for you. BUT you keep that faith flowing strong in that wonderful thing we refer to as the mind. Don't know if you ever had to read Paradise Lost or not but there was a quote in that writing by John Milton. It goes something like this The mind is a place in itself and in it we can make a hell out of heaven or a heaven out of hell. Think that's close to the original. It's only been 42 years ago and my mind isn't what it used to be. Thanks again for the blog. God bless and keep the faith.

  2. Jamie, I believe that you will survive this dis-ease and flourish to continue raising pbk and growing old with Jeff by your side. I believe that in the depth of my being. The mystic Hildegard writes: "Love(ie.God) hugs you. You are encircled by the arms of the mystery of Love." I believe that there is NO energy on earth that is more powerful than love energy. And you are hugged by love energy and you are radiating love energy. You are already a winner! Sue Monk Kidd writes: "...Never give up on what you love. Going against the odds and bestowing care and affirming words on a life is the stuff of miracles." I will never give up. You are encircled by people who will never give up. Rest in that knowing. Miracles happen, against all odds. I love you unconditionally (and that IS possible, Mr. M !! :D ) Mom

  3. Tricia Collins HigginsJune 24, 2011 at 12:13 PM

    Reading your posts gives me goosebumps every time. Your positive energy radiates from your words and I am always so inspired and uplifted by your writing. Enjoy these lovely summer days and I'll be continuing to check in. You are amazing!

  4. Jamie, You write so powerfully about the worry each of us would feel if we were on the same journey. I hope that your wonderful gift of being able to write about it is helping you cope with it even just a little. When John, Andy and I spent that wonderful evening with you guys a few weeks ago, I had such a core feeling that all would be well at some point and that you, Jeff and. Kai would have many years to enjoy your lovely home. Fear and worry usually do paralyze us. ... nothing abnormal about your reaction. I pray that when you get your good news this week some of the worry will be lifted and once again you will be taking baby steps getting back to your "new" normal. In the meantime trust that we are all surrounding you with love and positive energy .... your support team is still with you and continue to be totally amazed by your strength and love.
    With love and many hugs,
    Joy, John and Andy

  5. Jamie -My husband and I found your blog recently and have both read it. My husband is fighting his own battle with Stage 4 Melanoma. He has his own blog: williamfightingcancer@blogspot. He has completed 2 rounds of Biochemotherapy at MD Anderson in Houston. We go back next week for his first scans and to determine what comes next. I am encouraged by your strength and the success of your treatment. I am a mom too. We have 2 little girls ages 5 and 4. I hate it so much that my kids have to go through this. I am so happy for you and your family. Thank you for sharing your story. Ann Libby

  6. I'm sending you all my positive thoughts and energy this day and everyday. Waiting is a hard game to play. I think you have a great perspective to keep your focus on the journey and the savor every moment with Kai and Jeff, friends and family. It's a perspective I have to constantly remind myself of...slow down, savor, treasure every moment in this life and don't sweat the small stuff.

    I love this quote: “The road of life twists and turns and no two directions are ever the same. Yet our lessons come from the journey, not the destination.” ~ Don Williams Jr.

  7. This entry goes to Jeff!
    I smiled from ear to ear hearing about your first Father's day. Congratulations! Jamie is right, you should be celebrated everyday :-)
    How wonderful to have so many exciting adventures planned with friends and family. By now I think you have enjoyed most of them. I'm sure they were priceless! I am happy for all of you!
    As always, many hugs and much love, Judy