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.