Monday, March 28, 2011

March 28

Poor Jeff either ate something bad or caught some sort of stomach bug and was sick his entire birthday weekend. He’s on the mend now so that’s good.  But we didn’t get to celebrate his birthday; we didn’t go out and he didn’t even open his presents until the next day. We’re going to try for next weekend – hopefully that will work out. If not, then we’ll have to wait until sometime in May.  So fingers crossed for next weekend. We’ve just been lying low this week. Kai seems to be completely over his cold and Jeff is getting over it as well. We mainly just hung around the house, although the weather was gorgeous and Kai and I got in some good walks. I feel like there’s so much I need to get done before I start treatment again, and I don’t feel like I’m making any progress. It’s difficult to be overly productive with a baby at home (and I’d rather play with him anyway). One of the things I have to do is make baby food for Kai. He’s about ready to start solids – exciting! I’m sure he’d be happy to eat as soon as I get around to making it. First up are squash, carrots, and sweet potatoes. If I can get all of them puréed and frozen before I go back in the hospital, I will consider it a success.

We go back to NCI for the scan in exactly one week. It feels like I have so little time left at home before we start all over again. As the time home becomes less and less, my anxiety becomes greater and greater. I am anxious to find out the results of the scan. But even more so, I am anxious about doing treatment again. Neither option (a repeat of the IL-2, or the TIL cell treatment) is easy and now that I’m feeling much better since the first round, knowing that I’ll have to start all over again fills me with dread. But if it is the IL-2 again, then I’ll be extremely thankful that I may only have to do one more round of treatment before I’m cured. And if it’s the TIL cell treatment, then I’ll be extremely thankful that I’m getting the treatment with the current highest cure rate (it has a 15% cure rate, and a 50 – 75% response rate depending on which steps are involved in the treatment). So either way, I’ll be happy about my options (although of course the scan will show that the IL-2 is working, so we’ll just do that again). It’s not that I won’t be thankful, it’s just that it’s so difficult and inside my head I am having a knock-down, full-on temper tantrum about doing it again. But we all do what we have to do. We all power through each of life’s unique challenges. And, in this case, the reward on the other side will be worth a million times the suffering that I will have to endure. In the meantime, while we wait for next Monday to arrive, the stress of the situation is starting to take over. I am filled with fear most of the time; not a tangible fear of the results, just a general fear. I hear noises in the house. I double-check the locks constantly. I check on Kai multiple times each night. The nightmares have started again. And I see dark shadows moving out of the corners of my eyes; like there’s something waiting outside to come in and get me as soon as I let my guard down. I don’t know if these are leftover effects of the IL-2, or if it’s a manifestation of the anxiety that I try so desperately ignore. Hopefully everything will be better after we find out the results of the scan. At least then we’ll know what’s going to happen next; it won’t be a great unknown. And we’ll get started on the next treatment, making us one huge step closer to the cure. I guess the unknown is the scariest part of all. That and also this time I know what the treatment entails. There was something nice about going in blind last time, ready for anything. But this time, if we do the IL-2 again (when we do the IL-2 again), I will know it is working and I will embrace it as my saving grace. I am in a fabulous place. I have every option still available to me. When I go back to the Clinical Center, I will be going back to the loving and dedicated arms of my cure team. And for all of that, I am thankful. And I will continue to fight as if my life depended on it, because, in fact, it does.

As I said, I’ve mainly been hanging out at home, enjoying time with Kai and some visits from friends. Kai continues to be his amazing, sweet self and is laughing more and more now that he’s over his cold. I know I haven’t been updating this as frequently as usual during this month at home, but I will pick up the posts again as the time to begin treatment (i.e. when I will have more to report) draws nearer. For the next week, I plan to continue to enjoy my time at home, and hopefully cross some things of off my to-do list. I’m also hoping for Jeff’s birthday celebration weekend to happen this coming weekend, because one night of fun without responsibility would be just what the doctor ordered for both of us before treatment begins again (and by “the doctor” I mean “me” unless I could get an official prescription from Dr. Schaub).

Today I am thankful for visits from Laura, Lynn and Kate, and Jessica and Addelyn; a much-needed GNO this coming Thursday; the fact that I still have a whole week a home until we find out the next steps (and even longer until treatment actually begins); all of this extra time I’m getting to spend with baby Kai (when he otherwise would have been in daycare while I was back at work); the two promising treatments that represent my next steps; the continued support of our fabulous neighbors and MMG family; all of our amazing friends and family; and, as always, my fabulous husband Jeff (we’ll celebrate double this weekend) and my perfect baby Kai. For now we won’t talk about being apart again, my sweetheart. It’s the one aspect that I cannot let myself think about just yet.


  1. Now you have another "special" weekend to look forward to. Just consider the first one a rain out. Also, appreciate the extra time you had with Kai.Sounds as though you did appreciate!!! Your apprehensions are to be expected. Your confidence is a gift.Take care, God bless, keep the faith!!!


  2. CELEBRATE!!!! And wishing you continued tenacity and focus on the prize....getting melanoma OUTTA HERE!

    We head to UVA for scans for my man in May; back to NCI in August. NCI has been GREAT about passing records (including imagery) to us for sharing with our regular follow-up/primary oncology team. Don't hesitate to get copies for yourself of all that's been done. :)

    Peace and prayers and persistance!

  3. Do-it-yourself baby food is the greatest. However, as the ultimate lazy mom, I went straight for sweet potatoes when it was time to start Eleanor on solids. Bake them, mash them up a little, and you are all set. She loved them. The downside? I fed her so many sweet potatoes that she turned orange. Sigh. The pediatrician thought I was an idiot--probably not the first time! But she has grown up and these days she is not one bit orange.
    As you go back for treatment, envision yourself wrapped in a fluffy warm cloud of love and support from your family, your friends, and your care team. We are all sending prayers, thoughts, good vibes!

  4. Jamie, I have a fabulous rosle food mill at your disposal for baby-food making. And a cuisinart, and a kitchen aid. Do you want to come across the street for a baby-food making project? Linda will entertain Kai. Or you can hold him and direct us in what to do.

    I expect of course that you want to do it meditatively and thoughtfully and lovingly in your own familiar space.

    Ooh, Susan has a kitchen aid grinder attachment too. See we have all the toys and would be delighted to share. Even if it's only to lend you the tools...

    Beth (7016)

  5. I too have a kitchen aid, with never-used grinder attachmnet, and am happy to lend it or use it with you to get more than one veggie going at a time. OR to play with Kai while you work!!

  6. Two things bring me comfort in times of fear and stress: one is calming music, the other is the Psalm 23. "Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me." May the peace and the presence of the Lord be with you.

  7. Just keep winning that fight in your head. Just keep doing what you are doing. This is the definition of marathon. Your docs are going to be taking amazing care of you, just like last time. I wish that we could somehow lift what must be an Everest of stress right now. I'm really happy to hear that you are in a fabulous place and hopefully the IL-2 won't be quite as uncomfortable this time around. Give the giggly boy a hug for me.

  8. Jamie, it sounds like all of your feelings are so very normal. As the wife of someone fighting cancer, I also have those feelings of something lurking. I think a lot of it is just the unknown and fear but hopefully as you KNOW your treatment IS working some of that will stop.

    I'm rooting for you and know things will work in your favor. Not sure if you saw or not but the BMS drug IPI, name Yervoy was approved last Friday. This drug has worked incredibly well for my friend in CA who is a 2 year metastatic melanoma survivor! Telling you this so you know there's other treatment options available to you if need be.

    Hope you get your weekend to celebrate with your hubby!


  9. My daily calendar yesterday had this quote which Olivia has inspired me to share with you. : ) "To dare to put out your own pain, your own honest anger -- whatever the emotion is -- releases you into a new maturity. And everyone around you who is strong enough to take it is released into a new maturity." ( M. Woodman, author) You have accomplished this on your journey and helped the rest of us so much! Stay true and strong. I love you.

  10. Ah the days of frozen baby food cubes:) I miss them! While preparing meals I would the separate the cooking pre-spice, salt,etc. mash them up and put them into an ice cube tray. The tiny ice food pops were the perfect size for Jack at the time:)

    (Btw, your mother's M.Woodman quote is going into my quote stash:) This one I found resonances with me like you would not believe! I thought it would fit you perfectly today:

    "Many of our fears are tissue-paper-thin, and a single courageous step would carry us clear through them." ~Brendan Francis

  11. Hope you have a great weekend with Jeff. You two deserve it. Try concentrating on the fun you will have together and leave the future to the future. Live in the present. Too often we look to the future or back to the past and then lose the present. Monday will come soon enough.