Friday, May 13, 2011

May 13

The team that raised money for and walked in the Melanoma International Foundation’s melanoma walk at Villanova raised over $6,000. They received an award for being the second highest fundraising team out of more than 40 teams. That is just fabulous. Thank you so much to everyone who contributed and who walked or ran at the event. This amazing showing of support is just overwhelming to me. I wish there was something awesome and magical I could say to express my appreciation, but words fail me and an inexpressible sense of love, gratitude, awe, and inspiration fill me from head to toe. The continual coming together of people to support us personally and to support melanoma research is way above anything I would have ever imagined. It is the shining star on this journey and it will shine in my heart for the rest of my life.

Baby Kai turns 7 months old today. Every day he grows more and more into a person with his own desires, opinions, and expressions.  He’s eating all kinds of foods now, is sitting up on his own, points and reaches for what he wants, and is sleeping through the night like a champ. He still just has the two bottom teeth, but more are coming soon.  He’s an absolute delight and every second with him is the best second of my life. It’s so exciting to watch him grow. When we look at pictures of him over the past 7 months, and see how tiny he was in the early months, I can hardly even remember those days (and they weren’t that long ago). I understand now why nobody tells you exactly how difficult the first 6 weeks are – it really does get erased from your memory and all you know is the wonderful age your baby is now.  It’s strange to think he was only 3 months old when our cancer journey began. He’s now been alive longer on this journey than before it started. And we are hopefully coming to the end of the cancer and he will know only “normalcy” and peace from now on.
I’m in somewhat of a mental limbo right now. I am stuck between the treatment behind me and resuming “normal” life in the days ahead. I can’t go back and I don’t feel yet like I can go forward. I don’t know what “normal” will mean now. It can’t possibly be the same as before; I can’t possibly resume life as if this never happened no matter how quickly I am cured. Being a cancer survivor will always define me. It is a battle like no other and I am sure the scars are permanent.  The thought of leaving this limbo is terrifying. I can’t rectify in my mind the extreme difference between lying in the Clinical Center, hooked to tubes and machines, in a painful semi-conscious state, to getting up, getting dressed, packing lunch, and going to work as usual. And it’s not just work, it’s everything. The cancer bubble is isolating and all consuming. There is a safety inside this shell. Once I break free, I have to find a way to mesh both worlds together and right now, I don’t know how to do that.  I guess the answer is just to do it a little bit at a time until the two worlds naturally become one and a new “normal” is created. I just have to start taking short trips outside of the bubble – going to the grocery store, taking Kai to story hour, attending social events – and doing everyday things like cooking, cleaning the house, and working in the yard until one day I am just a person again; a person who had cancer yes, but not someone consumed by it. That is not to say that I will be the same person I was. I will not ever be that person again. The awesomeness of this journey has changed me permanently. This is my chance to become a better person, to appreciate each day, and to enjoy life as much as possible. These feelings are here now and I know that they will become stronger and stronger as the cancer part of this experience is left behind.  Right now the scariest part for me is thinking about if the IL-2 stops working. The doctors fully expect that the scan on June 1st will show it is still working (the tumors are still shrinking) because of the strong response shown after the first round of treatment. But it will be starting with the August scan where we begin to get nervous each month. And what if I finally break free of the bubble, assume a new “normalcy” and settle in to that mindset, and then BAM, we have to start all over again. That is the thought that is keeping me from moving forward now.  It may seem strange to call this limbo a comfort zone, but that is what it has become. I exist inside here, in my mind, wrapped in a layer of protection from the outside world. Of course I can’t live like this long term, but what if I do all of the hard work of breaking free and then I have to do it all over again. And if I do have to do it again, it will be with one entire treatment (the IL-2) crossed off of the list of possible cures and I have to begin a new treatment knowing that one has already failed.  What will my hope look like then? But I shouldn’t be harping on negative what-ifs. It is an indulgence and a cop out on moving forward and embracing my wonderful new life.  The IL-2 will cure me.  Nothing new has grown and my existing tumors have already shrunk about 45 percent. There is no doubt that the next scan will show them to be even smaller,  and that each following scan will do the same until the fabulous day we get the news that they are gone completely. I will live my life fully, with these lessons, and as an unstoppable warrior who can face any challenge head on with love and determination.  My wonderful friend, Kristen, who, understanding that IL-2 cures 5 percent of people who try it, said recently “Jamie, I have known you for 30 years, and you have never not been in the top 5 percent of anything.”  Sister, those words are my life boat. Bring it world, I got this.

Today I am thankful for the IL-2 that will cure me; the money raised and community created for the Melanoma International Foundation; my mother- and father-in-law who are still caring for us each day; my parents who show me only hope and support; the continued support of our neighbors and MMG family; all of our amazing friends and family; the amazing personal stories that people have shared as comments to this blog, thank you for reaching out to me and allowing me into your lives and hearts; and, as always, my fabulous husband Jeff (I am so excited to spend each new day with you, my love, my partner, and my best friend), and our perfect baby Kai. No matter what else I am or will become in life, I am first your Mommy, and for that I am the most thankful of all.