Tags
IPI, melanoma, metastatic melanoma, MRF, vemurafenib, Yervoy, Zelboraf
As Alan dropped me off for my appointment this morning his parting words were “try not to let them admit you”. Some days coming into the clinic are better than others. Today was a good day. Liver is a lot better and thyroid function is normal which means I feel a lot better. I’m all jacked up on steroids but it’s keeping me up and moving so I’ll take it. I feel like the train is back on the tracks. Best of all, I don’t have to go back in until Jan 15th with lots of scanning in between. This will be right at a year since my melanoma tumor was found in my heart. Which pretty much makes my oncologist not just a doctor, but a magician as well.
It’s been a different kind of holiday. I made it to the children’s Christmas concert at school as well as mass on Christmas Eve and I was very thankful. We have been awash with kindness from friends and strangers alike. More people than I can thank. People are so good to us, I even had a lady from Texas send me a beautiful rainbow prayer shawl knitted by someone in her parish. Thank you Eileen!
I’ve tried not to focus on the things that haven’t gone my way. Cards didn’t all go out. No big Christmas dinner. I may be too far behind on thank you notes to ever catch up. We lost my 93 year old grandma. She had a good life and lived it exactly how she wanted to including begging/bribing gullible friends and staff at her assisted living center to bring her Old Milwaukees and a pack of Kool’s. In fact, my brother Tony and I thought that Jane and Bob invented the term “happy hour”. We used to stay with them for a week in the summer, wearing them out completely. When four o’clock came, Grandma would make us root beer floats and they would each have a cocktail and they’d teach us to play cards.
The kids and I took Grandma’s Christmas gift to a nursing home and asked the nurses to pass it along to someone who was lonely and didn’t get many visitors. It broke my heart when the nurses just weren’t sure who to give it to, they had several people fitting this description. I felt so frustrated that I couldn’t do more, couldn’t do anything really. I wanted to say “Give me their names, we’ll be back later.” But I couldn’t. All I could do was say a prayer for those who are lonely and hope that one day I can do more. Just that morning I’d gotten up and realized with my first step that my knees weren’t going to be cooperating today. Gotta love side effects.
We had a wonderful Christmas. Alan “Clark Griswold”‘s outdoor lights stayed lit all through Christmas for the first time ever. I got everything I wanted for Christmas this year before I ever opened a gift. Our oldest was asked to be an altar server at midnight mass at the Dominican Motherhouse of the Sisters of St Cecilia. An enormous honor he is still wearing with pride. Santa came just as expected and for the first time ever I awoke to find our older two sitting in the living room chatting in front of the tree. Lovely. Our six year old made this beautiful card that says Mom and Dad, I love you more than I know. Awesome.
Do you still make New Years Resolutions? I’ll help you, write this down – go to the dermatologist. One of the things I wanted to do this year was find a way to reach out to more people and spread the word about melanoma. Also to share these God things He keeps putting in my path. So I moved the blog to WordPress in May and I want to share this with you:
Almost 8,000 thoughts about us and people reading about melanoma since May. Thank you!
When I started Zelboraf I went pretty regularly onto the MRF user forum for advice about my many side effects. Before long I found I was giving advice more than getting it. I feel so lucky to have such a knowledgable team of doctors and nurses at Vanderbilt that keeps me going. But not everyone has this. So about a week ago I added a link on the blog with a list of some over the counter remedies I’ve tried. This makes me happy too. Look at this:
So some good has come out of the bad, and maybe I helped some people this year. We raised almost $5000 for MRF plus Verizon’s generous sponsorship and I have made a group of amazing new friends just when I didn’t know I needed them. My family is healthy and I am stilll here. I am blessed.
NashVegasMom 
Lori Harris said:
Amy, it is wonderful that you have reached and are reaching so many. I am sorry to hear of your sweet grandmother’s passing. She sounds like someone I would have liked very much. I got your Christmas card yesterday….who is that man with Caroline and Parker?! Here’s to a better 2013. Love you, Amy!
Betsy said:
It’s wonderful to see how far-reaching an effect you have had, Amy. I have forwarded your blog on to three people, just in the last month. You have your own pyramid scheme going, and you didn’t even know it!!
So glad you had a wonderful Christmas. You deserve it.
Betsy, Tom, and crew
Susan Plantz said:
Amy, am so happy to read this post and hear what a blessed Christmas you had. Thanks for the reminder about getting to the dermatologist, an appointment I will make as soon as we return home from Chicago. I do have a few actinic keratosis spots that need attention and an area of possible basal cell that needs to be confirmed and dealt with. You are a living reminder to take care of our needs as mothers. If it concerns our husband or kids we’re “all over it” but less so with our own health needs. Thank you. I love you and wish you and your family a peace-filled and healthy New Year.
Edie Whitley said:
Merry Christmas and Happy New Year Alan, Amy, and kids! Amy, I think about you all the time and your positive spirit:). I’m keeping y’all all in my thoughts and prayers and sending you good vibes!
Karen Johnston said:
You are the coolest, Amy Willett!!! So sorry to hear about your Grandma. Sending thoughts and prayers to your family. Loved seeing you at Christmas Eve Mass. You looked beautiful 🙂 Love the twinkle in your eye. Wishing you a Happy (and healthy!!!!!) New Year. Love you!!!!! xoxo
Florence Chassaignac said:
I’m so happy things are going well, Amy. So sorry to hear about your grandma but it does sound like she lived well! Your courage, determination and wonderful sense of humor continue to inspire me. Many prayers for a happy and healthy new year! Much love to you.