Tuesday, September 13, 2011

September 13

The past few days have been a whirlwind of going back and forth between the Clinical Center and home.  Because of the toxicity of the cytoxin, I had to be on prophylactic IV bladder medication for 48 hours (and had to continue to pee every 2 hours until the medication finished). That finished at 7:00pm on Sunday and then I could go home to sleep, which was fabulous. I got to snuggle baby Kai and sleep in my own bed. I then came back to the Clinical Center on Monday late morning to receive the fludarabine and a few hours after that I could go home again for a few hours. I then came back last night to sleep because my last dose of fludarabine was at 5:00am this morning (with labs and premeds starting around 4:00am). The plan was that I would be able to go home afterwards and stay there until tomorrow evening. But plans have changed because my cell counts have started to go down (which is what they want them to do – my white blood cells need to be at zero before I get my new cells) and baby Kai has a cold. It was too risky to be home with him while he is sick and I have a decreased (on its way to zero) immune system. So here I am, back at the Clinical Center for the duration of treatment.  The good news is that the chemo is finished. It wasn’t something I would choose to do for fun, but it wasn’t as terrible as I expected. I am tired and nauseous, but otherwise doing well.  I haven’t lost my hair yet. Dr. Miller told me it will happen all at once, in one fell swoop, rather than gradually, so I’ll probably get it shaved tomorrow or Thursday so it’s less dramatic when it does happen. Tomorrow we are going to the TIL lab to visit my new cells and give them a pep talk. It will be really exciting to see the amazing facility and people who created them and to get to see them before they comprise me. I’m not sure what I’m going to say to my cells yet; I think I have to meet them first. That’s about all the news from here. I will get my new cells on Thursday around noon. In the meantime, I will just hang out here, not catching any colds. With fabulous nurses to talk to, Jeff to watch movies with, and an unending amount of side-effect medications at my disposal, it’s comfortable here and we make the best of it.
I brought some things from home to decorate my room. Mainly pictures of Kai to tape to the walls, but also pictures of Jeff and Kai in frames; a sign made and signed by everyone at MMG from last time I was getting treatment; a beautiful picture my friend/co-worker, Angelica, made me for my birthday, which reads “Girl meets boy. They fall in love. Get married. Have a perfect baby boy. Watch him get big. Grow old together. Very very old;” and pictures drawn by my cousins, Max and Grace. One of the pictures drawn by Max has my name on it across the top and the word “love” down the side. However, my name is written backwards. I’m not sure if Max is infinitely wiser than any 7-year old should be or if the backwards writing was not entirely on purpose, but either way, it’s correct. That’s what I am right now. I am Jamie backwards. And my doctors are going to turn me right-side-up and inside-out to cure me. So maybe even by Christmas, dear Max, I will be Jamie the right-way-across again. But it is taking me a lot of lessons in flexibility to get from backwards to forwards. And when I am not feeling well and I look at this picture, I remember, oh that’s right, I’m just backwards right now, but still there is love. And for that I am thankful.
Today I am thankful for the wisdom of my doctors making me stay here rather than risk catching Kai’s cold (as much as I would rather be snuggling him tight instead); I am thankful for the wonderful care he is getting from his grandparents; I am thankful for a wonderful dinner from Karen; I am thankful for the continued support of our incredible MMG family; I am thankful for our amazing family and friends; and, as always, I am thankful for my sweet sweet Jeff who carries so much of this stress and deserves so much more than I can give him right now, and our perfect baby Kai. Happy 11-month birthday little one. Next month we will be celebrating your first year, which has been the happiest year of my life.


  1. Next year Kai will be walking and you can feed him real birthday cake! XOXO Love you, Jamie.

  2. Speaking as a fellow spouse of a determined melanoma masher---I am sure your Jeff when he reads this, "deserves so much more than I can give him right now" feels as I do with my man....YOU ARE FIGHTING WITH ALL YOU'VE GOT!!!! THAT is the very BEST thing you can give to the one who loves you so ardently...that way, you'll have that "very, very old!"

    We're counting on it, and I know you two can, too! :)

    Always remembering you all in thoughts and prayers.

  3. Only a mom and wife of exceptional heart could say with all sincerity that this year is the best of her life--baby Kai and husband Jeff trump cancer every day of the week. They, along with all in the rune of St. Patrick, stand between you and the power of darkness.

  4. Keep at it Jamie. You too Jeff.

  5. God bless you - you sound courageous and brave and I am praying that the Lord will take hold of this illness and turn in on its ear! Hang in there - Love, Marilyn

  6. Jamie, I was reading the 13th when the electric went off. That was kind of eerie. Now power is back and the thunder is rumbling. You will beat this disease and you will be there for Jeff and Kai for many years to come. You get the rest you need. Zero is going to be your starting point? I sure hope those cells do the best they can possibly do. You deserve so much more time with your family. God bless you and yours. Going to Myrtle Beach for a week. I'll have a lot of catching up to do when I get back. I look forward to your words. Take care.