Monday, April 11, 2011

April 11

Home again, home again; sweet, sweet home again. This time in the hospital seemed to go a lot more quickly than the previous times and it was by far my easiest time physically. I still had all of the symptoms that I did with the first round, but, except for the nausea (which was much worse this time), they were all to a lesser degree. The doctors decided to stop on the seventh dose due to hallucinations, which this time were math equations all over Jeff’s face and a hallway full of pink butterflies, but I felt like I could have kept going if needed. The two previous rounds, I was definitely thankful when the doctors decided to stop the dosing and felt like I couldn’t have taken any more. I have a large rash on my face that interested the surgical team and the dermatology team, but they decided it was just a fluke of the IL-2 and nothing to worry about. So I have the rash, I’m extremely fatigued, and for some reason I cannot remember words very well (for example, it took a good minute and Jeff’s help to think of the word “ginger ale” yesterday), but otherwise I am feeling good and glad to be home. I didn’t have a private room this time, but I had the sweetest roommate, probably in her 60s, who was very sick and mainly stayed in her bed all day. I’m sure I was much more of a bother to her than she was to me. Overall, this round was basically the same as the first round. I had wonderful care from the doctors and nurses as usual. I saw a lot more of Dr. Rosenberg this round. He is head of the surgical team at NCI and has pioneered the majority of the existing melanoma treatments; including treatment with IL-2 and the TIL cell treatment. It was very reassuring to know that I was being treated by him personally; that he was personally vested in my cure. To see him every morning during their rounds (even on the weekends) gave me an extra boost of hope each day.  And for that I am thankful. Also, my blood work showed the same spike in my lymphocytes that it did during the previous rounds, so even though they don’t have data to prove there’s a correlation between the spike and a response to the treatment, everyone seems to agree it’s a good sign.

We came home today to a huge sign in our front yard with the words “Welcome Home” and a melanoma ribbon painted on it. Our fabulous neighbors across the street made it and put it up without anyone knowing. Also, our yard was all cleared and there were flowers planted (pansies). We have such wonderful neighbors. We knew when we came to look at this house for the first time that the neighborhood had a special feel to it, but we had no idea what a loving family we would be entering when we moved in. I look forward to being outside later in the week and getting to see everyone. We went out for a few minutes earlier today, but a few minutes were all I could take right now. Another fabulous thing that happened was that the elementary school I attended (Whitfield Elementary) had “Jeans for Jamie” day the day that this round of treatment started (April 6). The teachers paid a “fee” to wear jeans and they donated all of the money to the fundraising efforts of the team doing the walk for the Melanoma International Foundation. Every day I find out a new, incredible way that people are banding together to show their support. I know I say this a lot, but the constant and meaningful showings of support are truly overwhelming. After my next round of treatment, after the next scan, after I find out that the tumors are continuing to shrink and I am well on my way to being cured, I will spend the rest of my life being thankful for the gift of this journey. All of the fear, the worry, the emotional and physical pain, all of it put together does not come close to the awe, the joy, the love, the gratitude, the appreciation I now have for life. The treatments are not just erasing my cancer. The treatments are erasing all of the doubt, all of the resentment, all of the regret I have carried with me through my lifetime. They are smoothing over the residual bumps and rough edges left by the natural course of living. They are sweeping away the dusty “can’ts” and “don’t have times” that are always coving the “I wish I coulds.”  And they are leaving me free. This cancer has made me free. Because of how widely my eyes have been opened by the sheer magnitude of other’s love, I am now free to forget all things past I’d like to forget. I can unlearn misconceptions I thought I held. I can reshape my opinions, my mind, myself. I can see each and every day for the enormous possibility it holds. I can look at each and every person as an individual light of grace encapsulating experiences and wisdom that can enhance my own existence. I can choose to be a better person. And that is not a gift that I will accept lightly. It is a gift that I will spend the rest of my life attempting to deserve. It is the most powerful, amazing, wonderful gift possible. And for that, I am down-on-my-knees-with-tears-in-my-eyes thankful.

This week will just be a week of recovery at home. My mom and step-dad will be here through the weekend. My dad and step-mom are coming on Saturday, and Jeff’s parents are coming on Sunday to stay for a couple of weeks. I go back in the hospital next Tuesday for the final round. Then I’ll have new scans in 3-4 weeks after the final treatment is over. At which point I am sure the tumors will be gone and our new life will begin (or I guess I should say continue, since our new life began with the start of this amazing journey). We continue to be extremely thankful for our supportive family and all the help they are providing, taking care of Kai and of us. Now my eyes are closing and my fingers are typing more and more slowly. The excitement of my mind is not matched by that of my body, which has just fought a small war and is demanding rest.

Today I am thankful for our fabulous neighbors, their welcome home sign and all of the yard work they did for us; my mom and step-dad who lovingly cared for Kai and did many much-needed jobs around the house over the past week; Dr. Rosenberg for making my cure possible; the extraordinary doctors and nurses at NCI who let me spend another week in their curing embrace; all of the phone calls, cards, texts, emails, and comments of support I continue to receive; the ongoing support of our MMG family; the beautiful weather and fresh scent of Spring; and, as always, my absolutely fabulous husband Jeff who sat with me every day, all day in the hospital, and our perfect baby Kai. You will never know how happy I am to be home with you. For all of the things I am thankful, the most precious by far is you.

9 comments:

  1. I am so glad to read that your treatments are working! I've been a constant reader and I am sending you good luck vibes from Florida:) You have love and support coming at you from all over the world!

    Danielle VanCoeur

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  2. Happy to hear you escaped round three relatively unscathed. The scare at dose 7 made me nervous! But good show all around! Everyday you say "Yes I can" and followup it up with a "Yes I will", you are winning. You've got weeks and weeks of victory under your belt.

    Love,

    AJG

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  3. It's so good to read this blog. Things seem to have improved in all phases of your treatment and your life. You are a remarkable young woman and have grown so much through this experience. Your care in the hospital and at home seems to be top notch. Your mental attitude is at the top of the charts. Continue to stay positive in your approaches to everything in life. God bless you and yours.

    NKH

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  4. Jamie, so glad you are home. I'm so relieved that this round wasn't as bad...I prayed for that for you, so I am so thankful for this! Keep up the positive attitude! You are truly amazing in so many ways but your strength by far is what impresses me the most! This is almost over with...keep fighting the good fight ♥

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  5. Dear Jamie,
    I know Jeff is the love of your life and you could probably gaze into his eyes forever, but math equations all over his face? Yikes, that does sound a bit scary. However, pink butterflies filling a hallway actually sounds very pretty!

    As for the rest of your post?
    Your eloquent words have left me pleasantly teary eyed and speechless...

    As always, many hugs and much love to all of you! ~Judy

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  6. Hello,....Troil.

    "Your words serve only to spin a cocoon around your own irrelevance."

    (You know I don't mean that, btw.)

    Troil you old bag. It's been too long. I don't know what to say, other than that I'm glad you're kicking cancer's ass.

    You know who this is, right?

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  7. Jamie, so happy you are home and this treatment was a bit easier for you. Pink butterflies sound awesome but I'm not so sure about the math equations (:

    Hoping that you enjoy your week at home with your baby and husband!

    Jennifer

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  8. Jamie--I've said it before; I say it again: You are just the most marvelous and special person...not to mention my favorite. I love you; see you Saturday. Love, love, love Uncle Q.

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  9. Jamie, I'm so glad I cam across your blog. As a newly diagnosed stage IV, I'm just beginning the journey. Your courage is evident in your writing and encourages me to take on this fight and win it! I wish you all the best. Robert

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