Wednesday, July 13, 2011

July 13

Living with cancer is a constant exercise in emotional duality. Ninety percent of the time I feel two conflicting emotions, equally as strong, at the exact same time in regards to the exact same situation. I am simultaneously ecstatic that the treatment is working and terrified that it will stop. I am extremely grateful for everything this journey is teaching me and totally pissed off that it’s happening at all. I am confident that I will be cured and I am nauseous with fear at leaving Jeff and Kai. The same is true about returning to work. While overall I am thrilled to be back with people I love at a job I love, the cancer goggles show two different worlds. On the one hand, returning to work signifies the beginning of living with cancer. While I was home, entirely focused on Kai and cancer-related issues, the cancer felt like an encapsulated event. Like something we had to pause to deal with, but that we would get rid of it and then afterwards go about our normal lives using the lessons we’ve learned. But incorporating the “normalcy” of going back to work makes the cancer part of our real lives. It is something that exists along with us.  And that makes me feel like a cancer patient more than anything else has so far. However, on the other hand, I am extremely proud of us for being able to go about our normal lives, dealing with everything as best we can (and in my opinion, we are doing a pretty good job). I am thrilled that we can manage daycare, and working, and taking care of the house, and eating, and doing chores, and everything else that is involved in everyday living, while knowing that the cancer is riding along with us. And that pride that I feel for me and for Jeff makes me really very happy. I am proud of myself for juggling it all, even though I am equally terrified that a flaming bowling pin (or more accurately, a flaming tumor) may get thrown into the act at any point. But this is our life now. We are going to be simultaneously living with gratitude and waiting in fear until the cancer is gone. And it will be gone. I don’t know when, but someday, it will be gone. And I am extremely lucky to have a job that I love at a company comprised of such loving, supportive, generous souls.

I am back to work three days per week. It is really good to be back. I missed everyone a lot and our patient recruitment work is more interesting to me than ever before now that I know what it’s like from a patient’s perspective. Kai goes to a fabulous, loving, playful babysitter named Betsy those three days. Monday was our first day. Everyone told me that I would be devastated the first day leaving Kai, but I wasn’t. I don’t know if that makes me a bad mom, or if it just means I have total confidence in Betsy (which I do), but either way it was a relief.  I think it’s a really good environment for him. She watches five little girls aged 2, 4, 8, 9, and 12 in addition to Kai. Remembering what I was like at ages 8-12, I am sure that Kai will quickly become a much-loved baby doll, carried around and dotted on all day long. I have no doubt he is going to get lots of attention and lots of love, which are really the only things that matter. Mr. Kai is 9 months old today. He has four teeth and eats three meals a day of regular food. He seems to be in no hurry to get moving but he can sit and play by himself for long periods of time, which is ideal because he stays where I leave him, happy and content. He continues to be the cutest, smartest, funniest, coolest, happiest baby ever born and I love every second of him.
There is a series on Showtime called The Big C. It is about a 42-year old woman (Laura Linney) who just found out she has stage 4 melanoma. I’ve only seen part of the first season, but so far it is about her reaction to finding out her diagnosis. Her overall response is to become fearless and do everything she was unable to do previously – like speak her mind, cut loose and have fun, not care what other people think. I don’t know if the show is based on a book or maybe someone’s real experience with cancer, but I am sure that her reaction is a very common one. She is resigned to dying and doesn’t worry about the future. For example, she cashes in her 401K and buys a sports car. I like her character and I like the show. But it is, so far, very hopeless. Maybe her character will change over future seasons and this first season is just meant to show her initial reaction; I guess we’ll find out. Overall I don’t relate to her initial reaction, although watching her makes me feel less lonely. And watching her also makes me wonder if I am going about my own reaction incorrectly. I wonder if I should be seizing the moment more. In my confidence that I will be cured, am I wasting precious time? Is there a happy medium between giving up and ignoring the possibility of defeat? Is there something more I should be doing with life right now? I don’t talk to many other people with melanoma. I’m not part of any support groups or online communities. I am not ready to relate that way, because right now I am someone who is having a crazy, but quick, fight with melanoma and I will no doubt be cured by the first treatment we try. I am not yet a cancer patient, and right now looking at cancer communities and discussion boards and support groups actually serves to give me less hope. So, I’m not really sure how other people like me reacted when they found out their diagnosis. Laura Linney’s character, Cathy, doesn’t tell anyone she has cancer.  The only person who knows so far in the episodes that I’ve seen is her neighbor, who is a somewhat surely 79-year old woman. When she tells her neighbor, she looks right at Cathy and says, “Well ain’t that a Mother F-er” (although not as edited). And that is it. That is the exactly perfect thing to say when someone tells you they have cancer. You just look them directly in the eye and say, “Well ain’t that a Mother F-er.” Because when you take all of the emotion, all of the anger, worry, fear, and sadness that you experience when you are first diagnosed, it all boils down to “Well ain’t that a Mother F-er.” And yes, yes it is. But then you realize what else it is, which is an eye-opening, heart-warming, soul-freeing new lease on life for which I am thankful every minute of every day. However else having cancer impacts my life, it has made me realize how truly happy and fortunate I am. Even though I hope every day for it to be gone as quickly as possible, it has become a friendly guide who constantly points out all of the amazing things around me. And without it, I may never have even seen how tremendously fantastic life really is. Thankful doesn’t even begin to express how I feel about that. I guess nobody’s reaction is right or wrong. You feel what you feel in all situations in life. It is not how something makes you feel, it is how you act on it; how you let it affect you, with gratitude or with anger.  Both are correct. But for now, I will stick with gratitude.  In the words of Barenaked Ladies, “You gotta kick at the darkness ‘til it bleeds daylight.” Yes sirs, you do. You have to keep on kicking and kicking and kicking until you win the World Cup and rip off your shirt in an overwhelming, whole-hearted display of sweet, sweet success. And that is exactly what we will do. So maybe we’ll be quicker to go to the Grand Canyon, and try new restaurants, and take Kai places we’d like to go with him, but I’m not cashing in my 401K yet. I’m going to need that in 30 years. And for that, I am thankful.

Today I am thankful for Betsy and the love she is giving to Kai on the days I am at work; I am thankful to return to my fabulous MMG family and for the new perspective I have on the work we do; I am thankful for the perfect balance between being back at work and getting to spend time with Kai; I am thankful for the continued support of our neighbors; I am thankful for our consistently amazing friends and family; and, as always, for my extraordinary husband Jeff whose complete love and devotion overflow my heart on a daily basis, and our perfect baby Kai. Kick, my sweet baby, kick as hard as you can and never ever stop.

9 comments:

  1. So happy to continue to see good news come through via the internet from your heart. I can hear your voice as I read your words..especially the, "Well ain't that a Mother F-er." LOL. O Jamie, continue to be well and spread all your love throughout the world. Thinking of you:)

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  2. Hey Jamie----we are still rooting and praying for you and your family...KNOW your attitude will be one of the most pivotal aspects of your triumph over the beast.

    Like you, I've found that message boards etc. while great sources of quick needed info and support can occasionally (not by their fault) be less-than-hope-instilling.

    FIGHT FIGHT FIGHT. Eye on the glorious cancer-free prize and a LONG life of love with your family.

    Stay well....we plan to!
    Cheryl
    Wife of Scott, Stage 3c, patient at UVA, clinical trial participant at NCI/NIH, nearly 17 months now NED. :)

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  3. Hi Jamie,
    I have heard of, but not seen, The Big C show. Based on your description, I can honestly say I would much rather see a show based on your journey and your way of living each day along the way. There is no doubt in my mind that the choices you make are the best ones for you. Following your head, your heart and your gut instincts works for you. :-)
    About Kai... seems that little cutie pie has a really good thing going on here! 1 boy + 5 older girls to dote on his every need = envy of little boys everywhere (haha) and more importantly, peace of mind for his parents. Sounds like you have an excellent day care solution. That's wonderful!
    Lots of hugs and love,
    ~Judy

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  4. Jamie, remember you are special. You are special in so many ways. I see doubt creeping in and I understand where it comes from. DON"T cash in your 401k. That's a TV stunt. Do for Jamie, what Jamie feels she needs to do. You are a very intelligent young lady and you make right choices. Get that confidence flowing, young lady. As you say, you'll need that 401K in 30 years. Enjoy work, enjoy Jeff,enjoy Kai. Get high on life. Ask your mother about that. Take care and God bless.
    NKH

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  5. i was diagnosed with stage III melanoma last year and will end a year of interferon treatments at the end of august if all goes according to plan. i have a daughter who will be three in november. i identify with so much of what you write. i included a link today to your blog on my blog that i just started (http://allisequilibrium.blogspot.com). thank you for sharing your story, it is so nice to know that i am not the only one with the thoughts that swim around in my head. take good care, sending you good thoughts.

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  6. I'm glad I'm found your blog. I am also going through Stage 4 Melanoma and relate to you in a lot of ways-not only being a mother-but your positive attitude and determination to not give up and surrender to this disease. Are you doing TIL therapy at NCI?

    My blog/journey is: http://strongenough-christina.blogspot.com/

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  7. Dear Jamie,

    Thank you so much for sharing your story. You are such an amazing writer to be able to convey the roller coaster of emotions in dealing with cancer and being a new mom. I was diagnosed with Melanoma in 1999 when I was a new mom to a 2 month old baby girl. After a year of interferon and one scare of reaccurance I am now the lucky mom of an 11, 8 and 5 year old.

    Melanoma continues to enter my life as I hear about what you and others are going through. I also know several people from friends, teachers and neighbors who have also battled this disease. I am glad to hear about the medical trials that are available and your ability focus on the positive.

    I will keep you and your family in my prayers.

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  8. Don't cash in on your 401K, you WILL need that in 30 years! Instead - keep your dates with Jillian and be the MILF in Kai's circle of friends, later! Ha! Love you, sister - SO GLAD TO HAVE YOU BACK AT WORK! XO

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  9. HAPPY BIRTHDAY, Jamie Aug. 10

    NKH and WDH

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